Posts with the tag autism

Join the fight against blatant disregard in Texas

Victor from Spring, TX — Thu, 23 Jul 2009 14:53:09 EDT

...for disabled and abused children, specifically my son.

State and federal officers are all behind protecting those who have been, and still are, abusing and retaliating against my son (Black Latino) and I (Latino) since I found out in Dec 16, 2007 they've been causing him brain damages to get Federal funding for special ed services which are denied him.
I've spent the last 1.5 years in the Courts, avoiding attempts on my life and freedom, trying to get our case heard. I've been rejected twice by Tx Supreme Court, six times by US Supreme Court. However, state entities and federal officers are all waiting for me to be made scapegoat according to a classified plan referred to as 'the protocol' - one straight out of Project Paperclip.

Primary Defendants include a Family Judge, Executive Director of Special Services for Spring ISD, and my ex-wife. Below is just 1/64th of a list of reference material.

   Harris County Sherrif's Drowning Case # 0007192537 in 07/2000
   Tx Attorney General's CVS Report # VC02461605 in 07/2002
   B.O.E. OCR Complaint #06071260 in 04/2007
   Biased Final Decision Due Process Case No. 206-SE-0407 in 08/2007
   1st medical neglect finding by CPS, # 26492443 in 01/2008
   2nd medical neglect finding by CPS, # 26550760 in 01/2008
   3rd CPS filing ignored, 401346 in 12/2008
   Unheard, disregarded filings, Case No. 2008-03143 in 01/2008
   Tx Supreme Court Denies Habeas Corpus Case No. 08-0896 in 10/2008
   Unfinalized 'Final' Orders Case No. 2000-27121 in 11/2008 ('bill of attainder')

Good Mother from Bad Mother, My Personal Change

hopeless in martinez — Wed, 25 Mar 2009 03:04:48 EDT

What I am is the Bad Mother, who only begins her journey transforming into the Good Mother , through it's dark existence. I will expose my life to show the world how change has started. It is my hope others will join in the purpose with their own stories. The world needs to see the whole picture through the individuals "all seeing eye". It is about protecting who we all are, universal beings of life..full of shadows, full of new light emerging.

To be continued...time to rest now.

Foggy Rock blogs: Fed's Autism Research Plan; What do you think?

EMK — Thu, 05 Mar 2009 22:29:12 EST

Here's the link: http://www.foggyrock.com/Blogs/ViewBlog/635/Feds_release_strategic_plan_for_autism_research

Questions, Comments, Suggestions?

EMK

Health Effects of Toxic metals/mercury on children

BernieW — Sun, 01 Mar 2009 11:04:56 EST

Toxic metals such as mercury, lead, arsenic are the most common cause of childrens neurological conditions such as learning disabilities, ADHD, autism, Asperger's. www.flcv.com/tmlbn.html Children with these conditions are usually found to have high levels of mercury, lead, arsenic, antimony, etc. in tests by treatment clinics/medical labs. One of the reasons is that many children are more susceptable to metals toxicity due to type of blood allele (APOE type 4) causing inability to excrete mercury and such . Many are also more susceptible due to immune reactivity to mercury, etc. www.flcv.com/suscept.html

Vaccines have been a factor in this: www.flcv.com/kidshg.html

Although mercury is the most toxic substance that kids are commonly subjected to in high levels, from all vaccines in the past and some such as flu vaccines now, www.flcv.com/kidshg.html , children also get high levels of mercury from their Mom's dental amalgam fillings (or their own) www.flcv.com/fetaln.html & www.flcv.com/damspr1.html

and from Florida fish, which commonly has high levels of mercury www.flcv.com/fishhg.html

Medical test surveys have found over 30% of Floridians have dangerous levels of mercury www.flcv.com/fishhg.html

Dental amalgam is the largest source of mercury in most people including Mom's who have several amalgam fillings www.flcv.com/damspr1.html

and dental amalgam is also the largest source of mercury in all Florida (and U.S.) sewers, thus a major source of mercury in water bodies and fish www.flcv.com/damspr2f.html

Dental amalgam is also a major source of mecury air emissions, from outgassing sewer sludge and crematoriums www.flcv.com/damspr2f.html

Most with over 30 chronic health conditions who replace their amalgam fillings and do detox recover or significantly improve. www.flcv.com/hgeovp.html This includes metals detoxification for autism, Asperger's, ADHD,

Metals detox is documented to be the most effective treatment overall for such children's neurological conditions by autism treatment clinics and surverys of thousands of parents of children with Autism, Asperger's, etc. www.autism.com

Mercury/toxic metals also block enzymatic processes required to digest wheat gluten and milk casein, causing eating these to be a major factor in the neurological conditions of such children, and gluten/casein free diet to cause major improvements in most.

www.flcv.com/autismgc.html &

Parent Ratings of Behavioral Effects of Biomedical Interventions for large group of parents of children who had autismhttp://www.autism.com/treatable/form34qr.htm Parent Ratings of Behavioral Effects of Biomedical Interventions for Asperger Syndrome http://www.autism.com/treatable/form34qraspergersyndrome.htm

Autism Sunday 2009

Unknown user — Thu, 08 Jan 2009 15:20:29 EST

Autism Sunday falls on the second Sunday in February every year. In 2009 Autism Sunday falls on 8th February 2009. Autism Sunday is also the International Day of Prayer for Autism and Asperger's Syndrome. People have been asked to pray for over 60 million people with autism around the world. Many in places like Africa and Asia are struggling without public services. Cathedrals, Churches and religious organisations have been asked to observer Autism Sunday. Faith communities have a role to play in reaching out to the vulnerable.

Please see the wikipedia entry for Autism Sunday or google 'Autism Sunday' for further information.

Autism if not for the weak of heart

Christine Dagnelli — Mon, 10 Nov 2008 13:34:25 EST

Autism is not for the weak of heart or mind. I imagine it would be very heavy on ones heart with all the many areas it encompasses that greatly require your absolute attention. I personally look at it as any other challenge, you have to start somewhere, you take it day by day, and you never give up hope. Sometimes having a challenge in your life just adds to what makes life interesting. It is atleast never boring, for if you love someone on the spectrum, you know with each day you do not know what to expect.

Autism keeps you guessing and on your toes, some would call it a constant state of stress, and that is true, since stress can be both good and bad. Planning a wedding or moving are both immensely stressful but both normally are postive things. So my day is no different then someone who is a wedding planner or professional mover, as long as you love your job and take care of yourself you are better off then someone who does not do one or both of those things. The benefit of both those occupations are providing ease and happiness to probably one of the most important days of the clients life. Noah is my client in away, and my job is just that everyday. The pay is lousy and time off never seems to come enough, but the rewards are much better than any other job I can think of.

I really can't say too much about what Autism is like for anyone else, only us and our situation. And that of those I also know whom we are close to. This is how I choose to look at it, I choose to be grateful for the oppurtunity each day to learn something new and see Noah learn new things. I feel fortunate to be given such a special person that mainly requires me to think outside the box. This gives me the oppurtunity to bond with him more. I choose to practice tolerance, patience, and strive to leave each day a little better than I found it. I am most grateful that I can choose.

My goal is like any other parent to make my son a whole well rounded person. My standards might be different, my way of achieving it definatly so. But the one thing I definatly do know, is we will get there as long as we believe we can.

Palin Special Needs Double Talk doesn't help people with Mild Develomental Disablities

Jason — Sat, 25 Oct 2008 02:02:08 EDT

How can anyone encourage funding for children with special needs when they oppose research projects that help identify mental disablities?

Palin says she wants more money for kids with special needs, but then wants congress to pull the plug on an effective research program that is helping to identify and research autism spectrum disorders.

As a person with Aspergers' Syndrome (a form of high functioning autism), I am appauled that Sarah Palin would want to kill a research project that helps identify developmental disablities but would ask for money to support a program that, from my own experience, fails to meet the needs of individuals with mental disabilities because people are either too cheap to pay for them (i.e. insurance companies, school districts) or pidgeon hole induviduals by grouping people who have very different diagnosises (i.e. putting people with Aspergers' Syndrome or Autism in programs with people who have Down Syndrome or severe mental retardation).

Because of such programs that group thouse with mild problems with those with severe problems, I haven't been too keen to participate in any organizations that handle mental disabilites. Those who don't have the severe problems really don't do anything because the program is not geared toward them. I have a degree in Computer Science, but the program I tried working with kept trying to lure me into retraining programs to get into sales or the service sector. I did not spend six years of college just to go back to a school to become a cashier at Walmart.

But the economy is dry. And jobs that require CS degrees have absurd demands in our area.

I've been vying to become an SQL adminstrator for the local natural gas company for about the past couple of years. The job requires five years of experience and has been a vancant position for about four years. Yet my education at the university I was taught at, nor my interest in SQL databases, are not adequate qualifications for a job in a position that I am interested in. I certainly can not wait five years to get this job, and I definitely can not move to another job market where I can work at a job that requires less requirements because I can not afford to move elsewhere.

So why am I being asked to take a job in a career industry that I have no interest in? It is because the people in the organization do not know anything about computer science. I can't blame them for not understanding, but they should atleast know some difference between computer scientist and Walmart cashier.

Because the organizations are focused on sending people who have no education and have severe mental disabilties to work, they don't know what to do with people who have mild developmental disablities who are educated.

And that is where IDEA fails. It helps with children with special needs, but what if that child has a mild developmental disablity rather than a severe mental disability? They're stuck with either participating in the group that helps those with severe mental disability or waiting for the economy to rebound so that companies with reasonable job offers come around.

Five years is too long to wait for a job or for help with developmental disabilties.

McCain dismisses meeting with Jenny McCarthy RE: Autism

Russ from State College, PA — Fri, 17 Oct 2008 16:52:08 EDT

Apparently McCain only does what is best for his campaign and not Americans...

"On her unsuccessful outreach to John McCain to discuss autism: "We tried. McCain had come out and said he thinks there's enough evidence between vaccines and autism, so I got on a helicopter [to meet him for] an on-camera interview. By the time I got there, the campaign manager said, 'He's ahead in the polls, and this is too controversial, and he doesn't want to go one way or the next.'"

source: http://www.popeater.com/television/article/jenny-mccarthy-finds-autism-cure/215869?icid=100214839x1211641835x1200714035

My Story

MimiTVA — Fri, 03 Oct 2008 17:24:33 EDT

I am a divorced mother of two wonderful teenagers. My son, Louis is an aspiring musician in 8th grade at a Catholic School because the public schools in my area are not worthy of my dog much less my child. And my daughter, Desideria is a 14-year-old, 9th grader living with autism. She attends Kenedy Kreiger High School , an hour and half bus ride each way in Baltimore because the school district in my area is abysmal for a girl with Desi’s obvious potential yet slightly inobvious disability.

I am in a committed relationship with a Cuban man who is in the process of becoming an American citizen. I also have my 18 year old niece and my older brother living in my house. I live and work in the Washington DC area. My older brother is recently divorced and could not afford to buy a place of his own, so until the economy bounces back he's bunking with me. My niece just graduated from High School and wanted to come to the big city to see what it's like to live, learn & work in a big city. She grew up in the heart of the mid est, a tiny town of Summit County, Colorado. My family and I are are originally from Venezuela, my parents were from Trinidad. Every issue from education, the war, the economy and healthcare in this election affects me and my family DIRECTLY. The only candidates that I identify with, that has seen my struggles, lived my pain and understands and respects my worth are Barack Obama and Joe Biden. I have no choice for the country of my choice, I chose to become a US Citizen and I take my voting priveledges very seriously. Since becoming a citizen in 1981 I have voted in each election and have not been fulfilled untill I voted for Bill Clinton twice. I saw my life change and prosper. I am an Emmy Award winning television producer and have worked and lived my dream to the best of my abilities to this point. Right now it's on the verge of crumbling because of the Republican mismanagement of my contributions to this society. Change has to come and I beleive Barack Obama will do that. It's important as a a person of African descent, it's important as a person of Latin ethnicity, it's important as the mother of minority children, it's important as a member of the media, it's important as an American citizen that I vote and get as many people to see the obvious choice of Barack Obama and Joe Biden to lead this great country out of this mess. That’s my story and I approve this message.

We borrowed against the house

Allison — Tue, 23 Sep 2008 02:39:41 EDT

We are yet another family risking everything to save a child with autism. I am that child; my mother's child, who at 29 is homebound due to the extreme auditory challenges that I've faced all my life and have heightened with adolescence and adulthood. I am unable to work, get out and connect with people and I've had to face medical experiences that I wouldn't wish on a dog. I have an appointment to meet with an audiologist in Highland Park to be assessed to see if I am eligible for Tinnitus Retraining Therapy. TRT consists of retraining the way your brain, not your ears, process sound. I will, if my tests show I am eligible for the treatment, be required to wear hearing-aid like devices that deliver what is called pink noise. Pink noise has a less broader frequency than white noise. Wearing these over 6 months perhaps more may retrain my brain. There will be phobias to work with as I have had scary encounters with the police from melting down violently when I've overreacted to a barking dog or screaming child. The TRT isn't covered by ANY insurance carrier. It costs $3000 to $4000. Only a specialized audiologist trained by Dr. Pawell Jasterboff will perform the treatment. I couldn't even get Medicare to cover a light box. Light boxes are used for depression and more specifically, SAD or seasonal affectiveness disorder. Light box therapy has been around 20 years, but in IL at least where I live, it isn't covered. Pres. Bush did me a favor. The stimulus checks came out and I used the whole of mine to pay for the light box. I'm grateful for the one thing the Bush Administration did for me. But it is not enough. Why can't government meet us halfway? My mom shouldn't have had to take out a loan. She's retired and the family home she's lived in for 40 years was mortgage-free by the 1980's. We are lucky we can even do that. Families have lost cars and homes not to mention marriages due to the sheer stress and financial burden of raising a child with autism. They'd do anything for their child. I know. But they shouldn't be alone in all this. There shouldn't be all this red tape. Homelessness and hopelessness shouldn't be the answers-but sometimes they are-in America where all are created equal and entitled to persue happiness.

http://hyperacusis.net

Northshore Audiovestibular Lab-Long Grove, IL

~Allison

My recent letter to Minnesota's newspapers

Jill Michelle — Thu, 18 Sep 2008 22:42:12 EDT

Dear Minnesota: I'm writing because I have roots in Minnesota. Why do I support Barack Obama? I believe in his intelligence and goodness. I believe he's willing to listen to all sides of all issues. He had the courage to not vote for the War. I believe he understands the issues of families with disabilities better than McCain and even Governor Palin. I have a ten year old son with autism who can not talk. Palin does not understand the beauty and pain of our everyday life even though she claims to. "Senator Biden always has been a strong supporter of the Americans with Disabilities Act (ADA). He has long championed efforts to allow Medicaid to provide home- and community-based support services needed by disabled individuals to remain out of institutions. He also fought to allow low-income families with disabled children to buy into the Medicaid program." Also, I believe fundamental and of concern for every American, Obama believes that companies should not get billions of dollars in tax deductions for moving overseas. Obama will fight to ensure that public contracts are awarded to companies committed to American workers. Thank you, Jill, A Proud Autism Mom

Autism.

Jesse Radin — Fri, 12 Sep 2008 21:38:40 EDT

I have, or had, Asperger's Syndrome. My mom knew I was not quite right around 4, and I was diagnosed as being "almost borderline" at 8. At 4 she already did behavior modification therapy, so if I had been tested at 4 I would have probably been considered Asperger's.

At 8 my mom and I talked about how I wanted to change, and I did. The first year after changing was painful. I was aware people hated me, but the next year my life turned around. Autism IS a disease, whether you like it or not, however it has some positive benefits. If someone can be treated (not cured) very well they can be an almost-normal person with a few quirks, and a few amazing talents. That is where I am. I admit my obsession with politics and demographics is related to Asperger's.

My friend was diagnosed at 12. His mom yelled at him and told him to "get cured." He is doing well, but not as well as I was at his age. He was afraid to get a job at 19 and spent his summer playing World of Warcraft.

My other friend is 22 and may not have been diagnosed until recently, although the signs were there when he and I were friends at 11. His parents didn't want to admit to the problem, and they usually left him home alone. He's never driven and never had a job.

Earlier diagnosis and treatment means a better life for Autism/aspies. If I had been screened and discovered at 3 or 4 as being on the spectrum, my life would be even better than it is now, and I think it's pretty amazing.

Even though with severe autism can be trained to fit in. Just because they do not communicate verbally does not mean they are dumb. Obama knows this as do I.

I fully support him screening for Autism Spectrum disorders, and now that I have read his plan for them I will donate even more money to his campaign.

Special Needs

Karen in St. Joseph, Missouri — Thu, 04 Sep 2008 19:11:51 EDT

Today, my son Rexie and I reviewed his notes for KiDS for Obama - Missouri. After his school day, he began typing on his community blog; when his fingers tired, I began typing until we finished.

I am truly proud of him and the work he has done in this campaign. Please click the link and read the blog... it's a good read... informative.

http://my.barackobama.com/page/community/post/rexieplanalp/gG5vNW

OBAMA FOR PRESIDENT '08

ALL CHILDREN HAVE SPECIAL NEEDS

KiDS for OBAMA - Missouri — Thu, 04 Sep 2008 17:19:57 EDT

Barack Obama with Rexie Planalp, American Airlines Overhaul Base, Kansas City, MO Aug., 2008.

I was a 22-26 week premie. My parents tell me I had 15 diagnosis on my discharge summary from the hospital. I was a "Special Needs" child. Thanks to hospital rehab programs for premies, Missouri First Steps, United Cerebral Palsy, and advocates for children like Barack Obama, I am here today to shout, "WE THE PEOPLE... YES WE CAN! BARACK OBAMA FOR PRESIDENT!"

Link: www.stjoenews.net/news/2008/jan/03/boy-born-early-leads-busy-life-now/

BARACK OBAMA'S health plan will mandate coverage for children. He introduced the Healthy Places Act to assist local and state governments assess the health impact of new policies or projects. Upon determination, the bill grants funding and technical assistance to address potential health concerns.

BARACK OBAMA introduced the Lead-Free Toys Act, to require consumer Produt Safety Commission to ban any childrens product containing lead. He also introduced legislation that would help protect children from lead poisoning by requiring all non-home-based child care facilities, to include Head Start programs and kindergartens, to be lead-safe within five years. The legislation establishes a $42.6 million grant program to help local communities pay to make these facilities safe.

BARACK OBAMA has been a strong supporter of over $1 billion in federal funding for Autism Research and Treatment.

BARACK OBAMA is a strong supporter to increase funding for the Individuals with Disabilities Education Act.

BARACK OBAMA supports increasing funding for Head Start and Early Head Start programs to provide preschool children with critically important learning skills; supporting the necessary role of parental involvement in the sucess of local Head Start programs.

BARACK OBAMA's Step Up plan addresses the learning and achievement gaps among grade school children, and supports summer learning and enrichment opportunties for disadvantaged children via partnerships between local schools and community organizations.

BARACK OBAMA (along with Senator Olympia Snowe (R-ME) worked to introduce legislation lowering the income limit so that 600,000 more families can benefit from The Child Tax Credit.

BARACK OBAMA assisted in creating a National Sex Offender Database through his co-sponsorship of Dru's Law. The law was incorporated into the larger Adam Walsh Child Protection Act, an Obama supported measure; co-sponsoring the Sex Offender Registration and Notification Act.

BARACK OBAMA supports The KIDS Act, which requires sex offenders to provide their Internet identifiers (email address, instant messaging tags, etc.) for use in the National Sex Offender Public Registry.

BARACK OBAMA co-sponsored legislation providing assistance to the children of methamphetamine abusers.

BARACK OBAMA DID THIS, AND MORE! He knows that all children have special needs... to have healthcare, an education, parents who participate in their lives, and knows children need to be protected from preditors.

BARACK Obama knows that children with serious medical conditions like Autism and Down's Syndrome require healthcare coverage. That is why his healthcare plan mandates coverage for children.

Autistic children are not, "those kids"... Down Syndrome children are not, "those kids"... Developmentally delayed children are not, "those kids"... poor children are not, "those kids." THEY ARE THE CHILDREN OF THE UNITED STATES -- THEY ARE OUR KIDS... ALL KIDS ARE SPECIAL AND REQUIRE SPECIAL NEEDS... EDUCATON, HEALTHCARE, AND A SAFE ENVIRONMENT!

BARACK OBAMA IS A CHAMPION ADVOCATE FOR CHILDREN!

"In 2007, before Palin assumed her office of governor, the State of Alaska FY2007 Governor’s Operating Budget for the Department of Education and Early Development Special Schools Component Budget Summary (this department provides services---not just school but services---for children with severe disabling conditions) includes approved and necessary budget increases to help special needs children. This budget was released in December, on the 15th to be precise, 2006.

In that budget, the budget actuals are (FY = Fiscal Year):

FY 2005 6945.30
FY 2007 Management Plan 7949.30
FY 2007 Governors 8265.30

Palin was elected governor in November of 2006, and assumed her position in January 2007.

When budget time rolled around in 2007, Sarah Palin---self professed advocate for special needs children, mother to a special needs child, aunt to a special needs child, and who promised in her acceptance speech last night that she was there for special needs children---slashed the budget. When she said she would be a "friend and advocate in the White House," I guess she just meant in words, not with actual money for needed services.

Here's what the State of Alaska FY2008 Governor’s Operating Budget for the Department of Education and Early Development Special Schools Component Budget Summary shows:

FY 2006 7949.30
FY 2007 Management Plan 3173.70
FY 2008 Governor 3156.00

You see right. Under Governor Palin, funds decreased from a planned budget of 8265.30 to 3156.0. That's a 62% decrease. Actual consumed amount went from 7949.3 to 3156.00, where it lingers to this day. That's a 60% decrease." (http://momocrats.typepad.com/momocrats/2008/09/sarah-palin-sla.html)

P.S. My Mom helped me type this.

Thanks for reading all this,

REXIE PLANALP, Chairperson KiDS for OBAMA-Missouri

Pimping out Trig Palin

Andrew Dzeguze — Thu, 04 Sep 2008 01:45:23 EDT

I don't want people to read this without understanding my persepctive. I am not a die-hard liberal - I have leaned conservative, especially on national security, most of my life. At the same time, I have a son with autism. That is a reality I have talked about before in this space and have lived with for more than eight years. He's 11, was diagnosed at 2 and a half, and utterly changed my family's world. I also have a wonderfully typical daughter, aged 3, in case anyone cares. In any event, I'm not a one issue voter - it just happens that I have a vested interest in the developmentally disabled population.

In any event, my son's diagnosis and my own struggle should make me a pushover for Sarah Palin. After all, she's proudly gave birth to Trig Paxson Palin, a baby with Down Syndrome (the national association likes Down, not Down's, for reasons of advocacy I'd rather not get into) and told me point blank tonight she'd be an advocate for parents of special needs children. But it is that very act that disgusts me more than anything else I have heard about the woman.

I know first hand the pain of realizing that your child is different. I am faced with it every day. I didn't talk about it openly for years after my son's diagnosis. Not because I was embarrassed by it, or loved him less, but because I just couldn't stand the pity I received any time my son's condition came up among family or friends. I wanted my colleagues, especially, to respect me, not take pity on me. I could easily have used my son's condition to make my life easier, taking off from work or rejecting responsibility on the grounds that I had to spend time with my son. I chose not to do that, to rather take the time necessary without explanation, for fear that others would resent the privilege I was granted. After all, I wasn't disabled, my son was. Although as it would later prove out I was actually on the Autism Spectrum, too (I just didn't know it growing up) I clung to the idea - a very Republican concept of self reliance, to be sure - that I couldn't use my son as an excuse, a crutch, a basis for scoring easy points. That would have been beneath contempt - to use the plight of the less fortunate as an excuse for my own deviation from expectations.

Sarah Palin is taking just the opposite track. First, the right seeks to heap praise on her for "choosing" to give birth to a child with Down Syndrome. Of course, the irony of a pro-life person talking about the bravery of such a choice is never mentioned. If all children are the blessings the right asserts, and choice is irrelevant to the greater duty of birthing life, then she deserves exactly no credit for birthing Trig Palin. If anything, she gets a demerit in the book of righteous behavior for even having prenatal testing about his condition, seeing as how amniocentisis(sp?) is known to increase the risk of birth defects. I love my son, would never have thought of aborting him even if I had known the challenges my wife and I would face, but I know our choice to care for him is not brave. It's basic human instinct. My wife's choice, to make the care of the developmentally disabled her life's work after first giving up her dream job for my son - that's brave. Sarah Palin, though, not only wants credit for birthing Trig, she wants credit for ignoring him. She wants everyone to be proud of how she plowed right on through to working as governor of Alaska. Sorry, no one gave me extra credit at my firm for fathering a special needs child, and I refuse to give it to you - especially as you haven't even entered the really hard stages of parenting such a child.

Claiming the mere fact you have a kid with DS makes you an advocate for special needs, as Gov. Palin said tonight on behalf of poor, oblivious Trig Palin, is also specious, especially as John McCain's proposed VP. John McCain opposes requiring states to transition people with developmental disabilities from state institutions (basically prisons without barbed wire) to community settings. He opposes making the ADA more than an unfunded federal mandate. He refuses to acknowledge that No Child Left Behind, as enacted, encourages schools to isolate and ignore children with special needs. Case in point - my son has been "encouraged" to sit out NCLB testing twice (even though he met or exceeded state and federal standards), and minorities, kids with special needs or a combination of the two seem to get blamed every time a school falls below Federal guidelines. McCain's pro-voucher stance doesn't do anything to address the abilty of private schools to discriminate against kids with developmental disabilities. Currently, they are allowed to exclude anyone, and will exclude anyone with behavioral difficulties even if the child is academically proficient (been there, done that). Vouchers, if adopted widely, would also cripple the ability of public schools to provide critical assistance to children who can access the curriculum but need help in the form of instructional aides. So, Sarah would have to fight John to the death (or at least get a public reversal of numerous policy positions) to convince me she really meant anything she said about parents of special needs kids tonight.

I try hard never to call my son "special" or "special needs" unless I'm fighting for his rights with school admin types. I want him to have a full life, including higher education, and maybe even marry and have kids some day, and I am dead set against limiting that for him in advance by imposing labels on his potential. As a result, he is beautifully, blissfully unaware of any distinction between himself and his peers. I actually tried to have a "you have autism" speech with him recently, after he blissfully gave away over $100 worth of Yu-Gi-Oh cards to "be nice" to a casual acquiantance. I asked if he knew what made him "different." He said, God bless him, that it was his love of magic and Yu-Gi-Oh that set him apart - not the stemming, the squealing, the inability to understand cause and effect, the lack of communication or anything else. I was at once humbled, terrified and oh so proud of my boy at that moment. I long for a world that won't cripple or kill his generous spirit without thinking, but I fear for his future in the world as it is.

Palin, on the other hand, seems quite comfortable with sacrificing Trig on the altar of ambition before he ever has a chance to realize his own potential. That she couples it to false encouragement and faint praise for parents like me only deepens my resentment and my resolve to see a new day in America. One where we acknowledge not just the raw glory of life but its diversity. One where we truly embrace the Golden Rule and love our neighbors as ourselves. One where my son, though incapable of being "normal" is nonetheless accepted and allowed to be the majestic person that he has the capacity to be. An America that will not tolerate abuse of the least deserving of such treatment. Sadly, an America the Republican Party has no interest in creating. Tha's why, unlike Governor Palin, I really mean it when I say "Thanks but no thanks" to her offer to be my advocate in Washington.

Autism Speaks Announces Multi-State Insurance Legislation Campaign Florida, California, Michigan and Pennsylvania are Key Battlegrounds in Effort to Change Insurance Laws

Emily from Grand Rapids, MI — Tue, 02 Sep 2008 23:02:28 EDT

Autism Speaks Announces Multi-State Insurance Legislation Campaign
Florida, California, Michigan and Pennsylvania are Key Battlegrounds in Effort to Change Insurance Laws

Full Story:

http://www.autismspeaks.org/press/insurance_legislation_campaign.php

Michigan has yet to pass.

Autism families need more than a helping hand from the community...

Emily from Grand Rapids, MI — Tue, 02 Sep 2008 22:52:05 EDT

I found this text on the web regarding Obama's inclusion of helping children with Autism.

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

I am a strong supporter of Obama, but as a mother of a 4 year old daughter with autism we need more than a "helping hand from the community." These children can retain anything they learn before the age of three. When my daughter was 20 months old I quit my job to learn to do the therapy that I could not afford and spent five hours a day teaching her everything I could knowing it was a race against time. Today, professionals all agree that without the intense intervention she would never be where she is today. But because health insurance does not cover therapy I had to quit my job and learn myself. Many others are taking out 2nd and 3rd mortgages or have lost their home all toghether to pay for anything that will help their child. There is hope but you need to react quickly with these children. Research is good, but there are very EFFECTIVE therapies that we need RIGHT NOW.

Obama, please speak to the parents of children with autism.

This is not just a health care issue but an education issue as well. I dare say as well that this is not just health care and education, but the research may clearly show us some day that it is an ENVIRONMENTAL and FOOD issue as well. These increased cases are just beginning to hit the elementary schools and the public schools are not ready for educating the increasing number of students with this disability.

I sincerely believe that you have the ear and potential vote of families dealing with autism (1 out of every 150 children and their relatives) to give hope to. Please take the opportunity to address us, tell us how you can help our children before the election. It is more than helping us "live with autism", it is about helping us not go bankrupt because of the discrimination by the health insurance companies. It is about the race against time in doing interventions before three, not just evaluations (evaluations are not covered either). There is help out there but we can't get too it because we cannot afford it.

Arguments In Support of Private Insurance Coverage of Autism Related Services

Emily from Grand Rapids, MI — Tue, 02 Sep 2008 22:39:04 EDT

Arguments In Support of Private Insurance Coverage
of Autism-Related Services

Austism Speaks releases their arguments for coverage.
http://www.autismspeaks.org/docs/arguments_for_private_insurance_coverage.pdf

Autism Speaks Applauds Louisiana Governor Bobby Jindal for Signing Autism Insurance Reform Legislation into Law

Emily from Grand Rapids, MI — Tue, 02 Sep 2008 22:34:02 EDT

Autism Speaks Applauds Louisiana Governor Bobby Jindal for Signing Autism Insurance Reform Legislation into Law

See full story: http://www.autismspeaks.org/press/governor_signs_louisiana_insurance_law.php

Autism Speaks Applauds Pennsylvania House Speaker Dennis O'Brien and State Lawmakers for Passing Strongest Autism Insurance Mandate in the Nation

Emily from Grand Rapids, MI — Tue, 02 Sep 2008 22:31:42 EDT

Autism Speaks Applauds Pennsylvania House Speaker Dennis O'Brien and State Lawmakers for Passing Strongest Autism Insurance Mandate in the Nation

See full story:

http://www.autismspeaks.org/press/pennsylvania_autism_insurance_bill_passed.php

I would like to see Obama take this on as part of his national health care plan. There are a lot of families that need this help. Michigan has not yet passed this and we need help for our children!

Adult with Asperger Syndrome Video on You Tube

Allison — Mon, 01 Sep 2008 04:19:35 EDT

Here is the URL:http://www.youtube.com/watch?v=gb9S-Nu462A&feature=PlayList&p=31F1B7EB8D7F669A&index=3

I made this video of myself explaining what it's like for me personally to live with Asperger Syndrome back in May. I would like to include it here and hope I can help inject autism/AS further into the Obama Campaign.

This video basically talks about my overriding sensory issues which is the biggest reason I am homebound and can't work. There are no other services available other than seeing a therapist. There is a therapy available described in the video that isn't covered by any insurance that could help me with the sensory integration of my oversensitive hearing. It costs $3-4,000. My therapist is trying to tap into county resources, but in Kane Co. that is bleak. I already have to go to another county for that reason.

We need to invest in our autistic teens and adults as they are the tomorrow, today. Job skills training, job-friendly enviornments for those on the spectrum, college funding, assistants to travel w/ASD people to school or work to help them diffuse a situation (creates more jobs!). How about independent living? There are already assisted living facilities for seniors and in Chicago, a facility just opened for adults with disabilities age 22-64. They have their own small apartment and someone checks in on them. There are also services on site. How about something like that for people w/ASD's? On-site jobs would be great, choices in enviornments so that if I, say needed to live in a dog-free place, someone else w/ASD who can be around dogs can live in a different facility. Kind of like a college campus except you get a private apartment instead of sharing a dorm room. I I am an independent advocate for adults with Asperger Syndrome and you can find any of my videos on You Tube.

I encourage you if you are an ASD individual to either make or post your video's URL on your blog. You never know who might see it. Let's hope the politicians watch You Tube...from the presidential nominees to the town mayors!

Would like to hear your comments if you can keep them respectful.

~~Allison~~

My response to Jim Durkin's editorial in Daily Herald

Allison — Fri, 29 Aug 2008 19:19:36 EDT

As many of you may know, Jim Durkin (R) IL, is the Illinois Co-Chair for Sen. John McCain. He wrote an editorial for the Daily Herald newspaper which you can read @ http://www.dailyherald.com/story/?id=231169&#storycomments this is my response:

From www.barackobama.com/issues/healthcare :

There are 47 million Americans without health care insurance. These include people who are working 1 or 2 jobs and those who cannot work due to disability and cannot work because there are no programs to help them or jobs who can accommodate them. Sen. Obama wants and will work to make sure every American is covered and that there is parity. Too bad if the rich and the corporations who will barely feel the pinch will be taxed. Obama admits "We're not going to transform the system overnight". This is also his stance on Big Oil. This is why he doesn't support a gas tax holiday, because he wants to work on a long term solution that will save us on energy. Solar and wind sounds a lot better to me than nuclear energy. There is strong evidence that points to along with the genetic factor that pollution in our environment plays a role in autism. Wrong about being in the wrong place at the wrong time? Talk about more of the same. What is that old proverb about a fool returning to his folly as a dog returns to his vomit? There were a lot of Republican party voters @ the convention last night who weren't ashamed of their Republican past nor...

Report Abuse

posted by autisticA on Fri Aug 29, 2008 6:01 PM

...their willingness to admit that Barack Obama is the change we need right now. The facts are out there-on CNN on BarackObama.com. Perhaps Barack Obama needs to be more verbose about the specifics himself as the debates approach. I am writing this for the undecided. Elephants, with a few exceptions, never forget.

This is a typical Republican response. Obama is wrong about everything, McCain is right-about everytning. I would suggest this as matter for the "Hit 'em where it hurts" category at the action center, but as I ponder it further it really sounds like "more of the same". However, I just thought I'd put this out there in any case.

-Allison

a.k.a "autisticA"

"autisticaplanet"

An autistic adult's perspective of Barack Obama

Allison — Wed, 27 Aug 2008 00:08:15 EDT

Last night I listened to Michelle Obama speak in Denver, CO. For the first time my ears have heard in this campaign or any in my memory, someone brought up the word "mental health care". She said everyone should have affordable healthcare including mental health care. Though autism is not a mental illness (it is a neurological disorder imparing sensory and social interaction), the symptoms often lead us (myself included) to needing mental health care. My state is badly lacking in support in that area. I have watched many of Sen. Obama's videos on You Tube and BarackObama.com, but the one that resonated with me best was the one about how he would help people with disabilities like autism. He wouldn't just offer a hand-out, he'd create job training skills and living facilities for people like me. He said he would even hire people with ASD's to his staff. This not viewing the disabled as a charity case (or forgetting us) is so important. I cannot work due to the severe auditory challenges I face. I cannot be around small children or dogs. I have a very hard time navagating the social waters and find myself in hot water easy. I am 29 and stay in my home pretty much all the time. All I want in life is to have a purpose. I don't want to be rich and famous, I wish to work, which is only good for the economy and possibly live independantly. However I need the skills and proper enviornment to do this in. Too often in political speeches it is talk of the nation's children or elderly I hear of or a minority. As these are all important, I would like to include people with disabilities. We are too often invisible in politics but I think with Sen. Obama that will change.

What Really Matters

Buckholtz — Fri, 22 Aug 2008 00:16:23 EDT

I was watching Senator Obama on my broadband CNN direct feed today when he was in Chester, Virginia with Govener Tim Kain (hope I spelled that right.) Anyway, I loved the feeling in the Senator's voice. I entered oratorical contests in high school and remembered something really important that I learned about being able to reach people with a speach. Make it conversational. Not just in cadence alone. I was encouraged to use words like "we". Phrases like "you and me" is reassuring to people. I liked when Sen. Obama said, 'If you own one house, like ME...' I immediately felt a connection. That phrase, 'like me', was just perfect because yeah,...I'm 'like you, too 'cause I have only ONE house. I hope he sticks to that kind of conversational feel. It will crush any kitchen sink the opponent may throw because all Obama will need to do is stay on message. How, you ask? Well, by connecting McCain's lack of savvy concerning his OWN economic circumstance to his inaction for 25 plus years with the USA's economy. This is quite effective, I believe. Stay real, Obama. I love the tone you took today. This was text book perfect. Lot's of emotion and fire. Not mean or disrespectful in any way. Just right. Ramp this method up and stay on message. I think the average person (like me) will come around because we are quite tired of bluster.

I also am developing a concept, based on a 'grassroots' approach, to help families coping with autism financially. This assistance will be directly for what the family needs. I have a copy of a study that I posted on my Website at www.aacfinc.org under the "news" tab. It talks about how, on average, a family coping with autism loses about $6,200.00 dollars annually. The reasons for this loss in income varies because of the many variables involved in caring for an autistic or Asperger child. I plan on setting up the only national fund that helps these families directly according to their special circumstances. I have gotten some advice from Senator's Issackson and Marshal as well as former Pres. Bill Clinton. I'm pretty serious about this and have a pretty good following on MySpace to prove it. You can check all this stuff out at www.MySpace.com/aacfdonation.

I think Sen. Obama really will listen to what the people want and work towards allowing us an opportunity to pick ourselves up. I think he will be the guy to help take away some of the road blocks that are currently in the path of some of us who simply want the opportunity to make things better for ourselves and in my case, the people around me. I will have more to say later. What do you think?

Accessibility on Election Day - Can you devote time to help ensure it?

Amber from Attica, NY — Thu, 14 Aug 2008 19:43:38 EDT

If you're reading this, then I have a favor to ask you.

Will you devote some time to ensure that people with disabilities are able to cast their vote this Election Day - alongside you and me (not in a separate location for people with disabilities only!).

You can do this in so many ways, but here are a few quick and simple ones:

Check with your local BOE and see if they can use your help

Connect with your local Self-Advocacy Association

Call your local, public and medical transportation services and ask them to make Election Day possible for those they transport, by offering pick-up and drop-off every 45 minutes.

For more ideas, you can contact me, or your local Advocacy Center. Thanks for your help!

Why Obama is so popular in Europe

Nicky — Tue, 05 Aug 2008 11:33:57 EDT

I'm starting to get really steamed about all this.

Not to say that I haven't been in the recent past. A flash of George Bush can put me right over the edge, watching the documentary Who Killed the Electric Car is infuriating and hearing comments from irresponsible radio personalities like Michael Savage who said that 90% of children with autism are just brats is almost unbearable.

The response to Obama's obvious popularity in Europe is mind boggling. Do you want to know why Obama is so popular in Europe? It's because he represents hope and sanity. Do you think America is liked by Europe right now? Do you think the people in Europe respect Bush? His policies? Do you think people in Europe appreciate the war this administration dragged them into? Do you really think Europe appreciates the economic ripple effect that it is experiencing because of Bush administration policies? Do you as an american realise that the rest of the world has lost respect for this country.

At one time America was seen as the moral and ethical father to the world. A benevolent, just and fair leader. Not to sound coy but America was seen as the shining example of democracy, freedom and the persuit of happiness. People from all over the world wanted to move here. People wanted their country to be "just like america". Do you think that's happening now?

200 000 people showed up for Obama. Not just because they wanted to see his face, not just because the man can give an inspiring speech but because what happens in america has an effect on the lives of everyone in this world.

Our world, the people of this planet are crying for good leadership in america. The people of Berlin didn't show up for a photo-op, they showed up to show their faith in his message, they showed up to show solidarity for what he represents. The people of Berlin showed up to show us that they support us too in our effort to change what has been going on. The people of Berlin showed up to say, "Yes, you can!"

Don't be misled by the McCain campaign's attempt to steal that hope and solidarity. They wouldn't have attcked it if they didn't think it was powerful. And don't become complacent. Find a way that you can make a difference. BE THE CHANGE! Volunteer, donate, talk to people and most of all become informed. You are responsible for your happiness. You create your future.

War Crimes - Two Different Versions

Sandy — Tue, 22 Jul 2008 21:50:11 EDT

Recently, the Serbian police found and arrested a man responsible for the deaths of many Muslim men and boys, in the early 1990's. While his name is hard to pronounce or remember, the fact that he orchestrated such heinous acts upon others is unfortunately easily remembered. I read one woman's story today - how she was raped and beaten daily by her captors. Obviously, her existence from those days onward has been profoundly altered by her abuse. Fortunately, our world's leaders have developed a legal system to address such atrocities, and this despicable leader will be brought to justice in a civilized manner - quite foreign to the manner in which he desecrated the people within his own geographic area. While a trial cannot bring back (for all those who suffered) a sense of liveability, it will serve as a solemn reminder that a civilized society uses laws .... justice ... to right the wrongs in this world.

Today, (Published: July 22, 2008) Bob Herbert, of the New York Times wrote about more war crimes - of the American variety.

Another example of the physically disabled being prejudiced against the developmentally disabled

Jerod Poore — Wed, 18 Jun 2008 16:48:47 EDT

In more Olympic news it seems that the US Paralympic swim team doesn't want an autistic athlete competing in Beijing this year. Even if he did set a new record. Worse yet they initially told him and his mother that he made the team. It was only later that they filed a protest with the International Paralympic Committee to disqualify him because, you know, he's autistic and all. He'll drown or something.

It is the first time in Paralympic history, perhaps even in all of modern Olympic history, that a country petitioned to disqualify one of its own athletes.

There's no point in my commenting on excerpts from the story. Just read the heartbreaking thing for yourself at the New York Times' site:

A Disabled Swimmer’s Dream, a Mother’s Fight

Don’t Even Think About Going to the Olympics!

Jerod Poore — Tue, 17 Jun 2008 15:17:02 EDT

China really, really doesn’t want to have anything to do with the mentally interesting during the Olympics. And when they hosted the Special Olympics in Shanghai back in October 2007 they made sure that everything looked good. Go anywhere else though, and when it comes to actually providing services for the developmentally disabled the government talks a good game but when it comes to actually providing services it’s worse than some places in the US.

A look at the shape of things to come under a McCain administration, or just another good reason to avoid buying goods made in China whenever possible and disliking President Bush even more for going to the opening ceremonies?

Read on…

A Mother's Heartbreak

Penny — Mon, 16 Jun 2008 22:41:24 EDT

Today, I stayed home from work nursing an ear infection. However, it was nothing compared to what I would learn later in the afternoon.

I have three children, a daughter and two sons, whom I adore. They are the joys of my life and I am proud of each of them. I would do just about anything for them. My daughter has Aspberger's Disorder and Mood Disorder - Not Otherwise Specified. My oldest son has Aspberger's Disorder while my youngest son has ADHD. At first, I wondered "Why me?" After many years, and my eventual acceptance of my life as it is now, my attitude is, "I am glad it was me. My kids are blessings from God." In fact, my oldest son's name, Timothy, means "light of God."

My daughter's conditions were diagnosed only three and a half years ago (too late for early intervention) so my ex-husband and I are going to be dealing with these issues with her for the rest of our lives. And, it is my daughter that is causing me pain at this writing. I cannot count how many diagnoses she has had, the number of medications she has been on, the number of doctors she has seen, the number of times she has been hospitalized and institutionalized, the number of times she has been destructive enough so the police have been called, the number of times she has been suspended from school...and the list goes on. Today, there was another incident to add to the list.

My daughter cannot attend a regular school with a special education program - too overstimulating for her - so she is now in a therapeutic school setting. She is in smaller groups, but they are in smaller rooms so her claustrophobic tendencies are fought each day. Accomodations have been made for her, which is what she needs. However, she is also a teenager. As you can imagine, her hormones are going crazy and, combined with the medications she has to take, life is wonderful at best, a nightmare at worst. It is often a four steps forward, three steps back process for her. Today, however, it was a four steps forward, four steps back - she is back at the beginning. It was all because of yet, another meltdown at school and, yet, another suspension. I am thankful she was in a place where this type of thing is seen occasionally as there was an intervention plan in place. However, the progress she has made has been erased. There are privileges granted for a four tier system for good behaviors; those tiers are major milestones and are not easy to get. Now, she has lost all of her privileges and must start again once she is able to return to school. It hurts me, as her mother, to see her go through this, but I agree with the punishment that she has to endure. Every single time I think that, hopefully, she'll learn from it. She does - to a point. That is what is both frustrating and heartbreaking.

This evening, I have been trying to find some outside support through my local autism society chapter. However, another thought came to mind: Barack Obama. I am a precinct delegate for the Democratic Party and was, admittedly, uncommitted - until tonight. I read Barack's stance on disabilities and on educational issues: full funding of the Individuals with Education Act (IDEA), the re-institution of the full effect of the ADA and I was amazed. Here was someone who knew what I was experiencing and what I was feeling. I raised an amendment for my state party's platform during our state's caucuses to demand full funding of IDEA from the Federal Government, and to give homebound students, such as those with autism and other types of mental, emotional, physical challenges who cannot attend a special education classroom setting, more support from their home school districts as part of IDEA. I had several teachers support me that night and, believe it or not, my amendment was incorporated into the State Party Platform. Right now, my daughter's home school district only allows for 5 hours A WEEK for homebound instruction. You read that right: 5 hours A WEEK! That is, to me, appalling. My daughter spent time online for some instruction but then would play video games as she had nothing else to do after her chores were done. I could not believe that a state as progressive in special education such as Minnesota would allow this - but it has.

A few years ago, my oldest son was receiving state services for his autism. They were amazing: a monthly visit from a social worker, money for items that I needed such as sensory devices and help around the house so that I could focus on my kids - and that was just to start. However, just as I was getting services to assist me in working with the coordination of three special needs toddlers (at that time), I received a call from my social worker. My son's benefits were being terminated effective immediately as he had already spent his year's allowance, after it was adjusted. I was stunned. I also found out why - Tim Pawlenty, the governor of Minnesota and John McCain's Minnesota Co-chair (and possibly a contender for his VP spot). It was the line item veto that did a disservice to my son and thousands of other families by cutting off funding for special education home support services.

I was angry then, but didn't feel I could do anything about it. I am angrier now with the current political climate not only at the state level, but at the Federal level as well. My kids have not been served by my adopted home state nor have they been served by their Federal Government. I am heartbroken at my daughter's latest incident, but I am angry with what supports there are in place - few, if any. And, it varies by state. Here in Minnesota, it also varies by county. I live in a county where home-based care is emphasized as much as possible. That's great except what about those children who need hospitalization for their behaviors? The system makes it difficult for a parent to make the choices necessary that are in the best interests of their child - in fact, it takes away our ability as parents to decide and puts the decision in the hands of a bureaucrat. I want that to change. I believe that we have the very real chance to make that a reality, not only here in Minnesota, but across the country. No one should have to move to simply get basic services for their child. Those services should exist where one lives now. That is why I am supporting Barack Obama for President. He understands and has worked with parents like us. However, this issue isn't purely political for me - it is personal, as it is for millions of parents like me. The main goal for us is to get through the day without a meltdown, a suspension from school, a call from the police for my child being violent...in essence, I want the chance for not only me, but others to have a day that most would consider "normal." But for me, there is no such thing as "normal." There never will be.

As the line goes in "Gone With the Wind," tomorrow is another day. Yes, it is. Tomorrow is a day of promise of what opportunities there can be and what we can do to make it happen. However, in order to get to tomorrow, one has to live through the "here and now" - today. And, today, I am blessed in so many ways. And, today, I also am in pain. However, today I also made a change: today will be the beginning of my action plan: I will be doing something about it.

Why Healthcare Matters - The Looming Autism Care Crisis

Andrew Dzeguze — Wed, 04 Jun 2008 02:42:14 EDT

My son, Brendan, is 10 years old. He loves TV, videogames, computers, his sister, and magic tricks. He's charming, manipulative, loving, frustrating, demanding and one of the best things that has ever happened to me. He also happens to have autism, albeit not as severely as many children.

I can't remember when I finally accepted that Brendan had autism. I know it was sometime after his second birthday and before his third, because before two he didn't speak at all and by three he was in intensive speech and physical therapy. I remember all the details of when my wife first suspected something, when she made a half joking, half fearful comment to his first speech therapist (back when we thought he just hadn't developed speech because of chronic ear infections) and had her worst suspicions made all too real. I remember the details of the day the diagnosis was confirmed to my wife by Dr. Naomi Sweezy at Riley Children's Hospital in Indianapolis, because of how angry I got at my wife afterwards. I vividly remember the phrase "you just know with some kids" being used, and a terrifying brochure that insisted that this diagnosis meant my son was almost certainly retarded (in the clinical sense of a below average IQ), had no imagination, could not hope to make close emotional connections, would likely never live independently, and was in many ways condemned to what seemed like a horrible, unfair life.

I am happy to report that the worst aspects of that brochure turned out to be unfounded (and have since been revised in light of the greater understanding of Autism Spectrum Disorders). My son is quite bright, and can read at grade level. His IQ is hard to measure but appears to be in the normal range. He can carry on quite a conversation so long as its on something he really cares about. Although he struggles to make emotional connections, I have no doubt that he truly loves his mother, sister and me (and the grandparents and uncles and aunt that shower him with presents and love). He will face a lifelong struggle, though, unless this country's healthcare policies change. And it would have been much more of a struggle if his mother and I had been forced to rely on the public healthcare system as it exists today.

Autistic Kid Voted out of Class; Teacher is Worst Person in the World!

Jerod Poore — Tue, 27 May 2008 16:23:11 EDT

Does this ever bring back memories of my getting kicked out of one day care out after another until I was a 7-year-old latchkey kid.

Wendy Portillo, a kindergarten teacher in St. Lucie, Florida thought the best way to handle an autistic child’s problems fitting in was to have him stand in front of the class, have all of the other kids tell him what they don’t like about him, then take a vote if they want him to stay in class or not.

Reality TV / Lord of the Flies based education. One more sign that America is going the way of the Roman Empire.

Wendy Portillo – Worst Person in the World!

Details in the extended section of the post.

Time for Change for our children

Lisa — Sat, 24 May 2008 09:07:41 EDT

As I began to write this, I never thought is would be so long, yet, you really need to know how important it is and how much it can help you get into the white House. I have attached a copy of a letter I sent to CNN on your behalf, but it never was aired. Also, my husband just had a heart attack because he gets so angry as to what is going on around the world, I really can not make a donation at this time, but as soon as he goes back to work I will do so. Good Luck on today’s primary.

I would like to bring to your attention a few issues, I have become an advocate for and one issue that desperately needs to be addressed, and no one has addressed this yet. This is the amount of the children who are currently being labeled with ADD, ADHD, ODD and even Autism, in hopes that you will begin to speak about this issue. I have waited and waited for some one to bring this up, no such luck.

Should you do so, I can say that you will touch the hearts of millions of parents, grandparents and young people across the world, as well as organizations that are trying to help the adults and children of today.

Currently, there are 5 million children being labeled with one or more of the above diagnosis, as well as depression and anxiety, it begins in the class room, if child who is sensitive to others emotions or energy (just to mention a couple), the parent will be called in and asked to bring the child to the doctor, then the doctor will label and classify the child with one or more of these labels, the child will then be prescribed meditation such as Adderal, Criteria or Ritalin, there’s money for the pharmaceutical companies, from there, the school system will classify the child and receive additional funds from the government. And the Parent needs to return to the doctors office every 30 days for a prescription, 7 years ago, my own son was classified with adhd, I tried to fight the system, but the system makes the parent feel as if they have no choice and are made to feel inferior and really given not choice in the matter. Now, I lecture about it and I am bringing this to the public with success.

Others and I are in the Middle Class and Every Class is beginning to call this a cartel. This cartel is targeting the American children. Meanwhile our child are becoming angry and depressed, they are being labeled and not heard or not being understood.

They become so angry, this is one of the reasons why some of the kids have become violent.

So at the end of the day, who is making the money?

The school system gets approximately 15,000 per child who is labeled for additional and special classes.

The Physician is making money ever month for an office visit just to get a new prescription.

The Pharmaceutical Companies are making millions of dollars on our children. Not to mention the fact that of these drugs are classified as a class 2 narcotic, I thought the government was fighting a war against drugs.

Current static’s show that 5 million American children are labeled and prescribed with medication. One out of 62 boys this year will be classified with autism.

This has created the highest drop out rate in our high schools, the highest suicide rate ever among our children and adults, an anger that has become so high that 3rd graders had become angry enough and made an attempt to kill their teacher. My heart goes out to these children, I grew up like them, I know how they think, how they feel, the sensitivity towards energy and words and I am trying to reach out as much as I can. I need help from the government, they do not need to be drugged, and they need to feel that they are understood, we need to go outside of the box, and these children are so intelligent and creative, I would bet if a group of them put their minds together, they would come up with new cars that takes less gas or no gas et al.

Too many people, across the nation, this has become a cartel. Who are the people you would touch?

The Poor

The Middle Class

The Middle Working Class – that Clinton feels she would get

Many of the Actors with young children

Whites, blacks, Hispanics, and all of races

Every Mother, Father, Grandparent, Sister, Brother and child who is currently labeled: including my own 18 yr old child.

The Spiritual Communities

The Humanitarians

And each child from 1950, and prior who have been labeled and who identifies with these children

I am one person; I am part of 4 humanization organizations that are currently fighting against this very cause. I have lectured from the east cost to the west cost, I have even gone to Ireland and Victoria Canada for this very cause, this is not only in the USA, but it has become a global issue. With this knowledge and if you begin to speak about this cause, which is currently being called the “Indigo Children and Crystal Children”, you would attract millions of voters.

For additional information, you can go to my web site, www.crystalhealingfoundation.com or you can bring up Indigo or Crystal children. Mr. Obama, I beg you to do so, our children need your help. These drugs are addictive and with 5 million currently labeled along with one out of 62 boys being labeled with autism, we are asking for your help.

I like you follow my intuition, as soon as I saw Bush in 1999 on the TV, I stopped and looked at him, I told my husband, if he gets into office, we are in big trouble. We need a person who follows their intuition.

One of the Events I have created is called Peace Day / Kids Way, my first was in 2007, I am currently planning another and would love for you to attend. If I do this in September, here in NJ, would you come? It would be our 2nd Annual Peace Day / Kids Way 2008, it current web site is www.peacedaykidsway.org It focus is to encourage kids to create music, dances, events and to have a panel of people of holistic background and spiritual approach, rather then drugging our children. We were planning to do this in June of 2009, but if you would come to this, I would have our organizations begin planning. Any help your organization could provide would also be appreciated. Please advise asap, so we can begin planning...

Love and Light

Lisa Bellini

Here is the copy of the letter I sent to CNN

First I’d like to say, I am 45 and white, not that race matters, and I am also in the so-called middle class. I like so many people believe that it’s time for change… I feel that all the older politicians with the so-called “experience” should be fired and this includes Hilary Clinton and John McCain.

The fact that one of the super pledged delegates wants 20 million dollars for his vote shows just how much Greed and Corruption is going on within the current politicians.

It’s time for a younger group to come in, a younger group with no ties to the oil companies, no ties to the big corporations, no ties to the pharmaceutical companies, no ties to wall street.

Its time for CHANGE, a new group with compassion and empathy for the middle class, compassion for the poor rather then the current Greedy, egotistic, self-serving and close-minded politicians that are currently in office, we need to deal with the problems in the USA, our dollar has never been so low, gas has never been so high, the price of food to put on our table is beginning to become out of reach for some people, the drop out rate in our high schools have never been so high. Instead, we are over in Iran fighting an unjust war. Rather then speaking with some of these countries to bring about global peace, the current leaders choose not too. I’m sure the people of these countries would rather have peace then war. Take a look at what is going on around the world, Global warning has begun, we all need to address this issue.

Again, I believe its time for change, I believe all should be Fired and I believe this will start with Obama

I have already begun my part by lecturing and informing the public about the children who are classified with ADD / ADHD. Our children are being put on Anti-depressants, what is going to happen when they grow up, what is the conciseness?

All of the prophecies including are coming to one date and they state we are at that time, December 21, 2012, as been prophesied as being the end of one era, and the beginning of a new. The Spiritual Community is well aware of this date, along with the indigenous people, Native American, and so on, there currently schools in China, Argentina, England, Mexico.

In 1972, China noticed these children and gathered 21 from the ages of 11 to 21. The noticed that if a child is taught early enough, they can enhance their abilities. These children are called Indigo Children and Crystal Children. Today in the USA, the Indigo Children are labeled with ADD / ADHD and the Crystal children are being labeled wit Autism.

The Crystal children who are being labeled as Autistic are being put through all kinds of therapy, why, because they don’t fit the normal what is the current Education system’s normal child.

So many parents don’t know what to do, so many kids are being pulled out of the public schools, because the schools insist that the child go to the doctor, where the doctor will classify the child and put the child on a calming drug, once classified, another cartel has begun.

The parents must go to the doctor every 30 days for a prescription, The school now gets extra money from the government, (when my son was classified it was 12,000, this was 7 years ago), and the pharmaceutical companies are making millions on the drugs. Meanwhile, there are 5 million children that are currently classified.

These Adults and kids are different, they are born with a sixth sense, with wisdom and knowledge, they have come to assist the planet and bring about change within the government, the educational system, and so on, from there, the crystal children who are currently being diagnosed with Autism will keep the peace within humanity and finally, we may have Global Peace, Unity, Harmony.

We are currently in a cusp between Pieces and Aquarius, We are going thru an awakening period, I believe the first of many changes may be electing Obama to bring about this change. It has to begin with some one. Those of us within the spiritual community, and many more are being called in every day, they can feel a calling, but they are not sure what it is.

We need help getting the word out, we need help to change the educational system, we need the first wavers to awaken and come to the front line as I have done. If you are a light worker, you must come from the heart and not from ego, if you don’t, these kids can tell if you are lying or not. Yes, they are Human Lie Detectors. When Obama speaks, I can see it comes from the heart. As I stated on the Bonnie Colleen radio station, Obama is an Indigo Adult, he has heard his calling within, and he is using his intuitive abilities by voting NO for the war in Iran.

We are being given a choice here, a choice for change, and one that may end the cataclysmic events that have been foretold for many generations, by many profits, the Mayan calendar ends on this date ends, the I-Ching ends on this date, Nasa has even verified an line up of planets that only happens every 26,500 years, are we going make it? Or are we going to let it pass by and pay for it on December 21, 2012.

These children and adults can learn, but we need to go outside of the box and become more creative

They need to go outside of the box. I am currently filming a documentary, I am doing this on very little funds, my own funds,

Parents, if you agree with me, I ask for your help

Earth Angel

Updates Regarding Some Offsite Articles

Jerod Poore — Fri, 09 May 2008 15:01:18 EDT

A lot of what I post here I also post elsewhere. Plus I didn't know about the groups when I first posted these, so this is also to let the groups know about the posts. See the extended text for the full post.

We're Scum, Not Heroes

Jerod Poore — Sat, 03 May 2008 19:39:32 EDT

Barack Obama supports civil rights for those of us with brain cooties.

John McCain literally believes that mental illnesses like schizophrenia don't exist.

As for Hillary Clinton, well, she doesn't support civil rights for us. Plus she's closely involved with a group that is all about selective abortions to make sure more autistic children aren't born and whose founder has openly talked about killing her autistic daughter. Right in front of said child. It's all on tape as the pundits like to say.

The extended post text is the full text of an article I submitted 3 May to Op Ed News, before any unfortunate mention of assassinations that were caught on video, with links to position papers, articles on the candidates histories and the like.

4/21 Articles, with some comments.

EMK — Mon, 21 Apr 2008 14:59:56 EDT

Well, here are some articles you might like to look at.

Autism

Virtual reality used with people with autism

China

Don't ask for heparin if it's "Made in China."

Debates

Obama: Let's campaign, not have more debates: I agree! There's no substance to them, anyway.

Humor & Insults

WWE invites candidates with smackdown.

McCain, don't insult us about Obama by insinuating a Hamas endorsement.

And, by the way, about Hamas...

A truce? Maybe it was a good idea after all!

Bush: Canada & Mexico

Even with "anti-trade" sentiment, Bush is still working on "expanding commerce" with Canada and Mexico, and they are meeting at New Orleans using Katrina as a backdrop. And my opinion about that are available here, here, here, and here. (Note: even though some of my blogs I referenced here are less to do with NAFTA and more to do with China and taxes, the issues that are presentedby them are relevant to Canada and Mexico as well, even though we still need work with them.) We should be paying attention Bush's meeting right now as we need to "watch our rights!"

One last thing: even though I cite mainly from MSM, that doesn't mean I don't like seeing info or even debating with info from non-MSM sources, as I actually use them to support my points, so please bring it!

"The society's deprevations relies/ not on our differences/ but the separation within."
--Linkin Park, "Frgt/10."

EMK

Autism in my life

Cheryl — Wed, 02 Apr 2008 16:57:58 EDT

My son will be fourteen on April 4th. He was diagnosed as severly Autistic when he was two years old. We have been on an adventurous path ever since. He is a gift, a joy and a challenge all rolled into one. On this day of "World Autism Awareness" I want to present an idea to the world that I have already begun to send out to my local and state government representatives. It is a dream that I hope see come true before it's too late. I plan to send this idea to our man of the decade (maybe the century), Barack Obama in the hope that he will take notice. Here is my idea, let me know what you think:

April 2, 2008

World Autism Awareness Day

To Whom It May Concern:

My name is Cheryl Hunter and I live in southern California. I have a teenaged son with Autism who is currently in a special education classroom on a public high school campus. My son is going to need assistance for the remainder of his life. This is the reason for my letter and proposed solution to the problem that plagues millions of people all over the world. What will we do when our child needs care and we can no longer give it?

Please review the following brief overview and help kick start the discussion about what to do with the individuals who will not benefit from the “cure” and “cause” theories or funding, but who desperately need our assistance.

Funding for early intervention, education, prevention and therapy are important, but we need to also prepare for the inevitable future we face as a society when the current population of children with Autism turn into the population of adults and elderly with Autism.

Thank you for your consideration.

Sincerely,

Cheryl A. Hunter

Residential Community For Families and Individuals Living With Autism

“A Dream I Have For The Future”

INTRODUCTION

As the mother of a young man with Autism I have concerns about his future and how he will survive without me. Plain and simple. I am one of millions of parents around the globe with this same concern. I would like to keep my son home for the remainder of my life and know that when I am gone he will be able to remain in the same home with the care he needs for the remainder of his life.

This desire presents many obstacles, the most glaring being financial concerns. I, like most parents, will not be able to generate enough money in my lifetime to begin to cover my son’s future needs. Even life insurance will not cover the costs of his needs and the money he receives from insurance or a trust fund would undermine the public funds and medical coverage he is entitled to. I understand the general public’s stand on taxation and welfare as more taxes are not a popular option. However, the reality is that we will have an explosion of adults and elderly with Autism in the coming years and the next few generations will be dealing with the issue of where to house these individuals and how to help them lead productive lives. Extended families can only do so much, and society cannot assume that siblings and relatives will be able to continue with the expense and care of these individuals on their own.

When I consider the amount of money we are willing to allow in tax dollars for defense and other government expenses, or the tax breaks that we are willing to give to corporate giants and the rich I am baffled at why a small percentage of that same amount makes people bristle. The small percentage needed to supplement a school district’s budget for successful programs or a community’s budget for assisted living, or a state’s budget for quality residential care is infinitesimal compared to the funds which will be spent in law enforcement, court time, emergency services, hospital services, medical services, etc. if these individuals do not have proper care. It will be reminiscent of the thousands of mentally ill who were released in the last century from institutions because of budget cuts.

SOLUTION OVERVIEW

Growing up near San Bernardino, California I remember how intrigued I was with Norton Air Force Base. I thought that it was the perfect self-contained community, interestingly similar to commune living. Over the past few years that thought has continued to play in my head when agonizing over the future of my son’s living arrangements.

My dream of the perfect setting for a secure environment for people with disabilities and their families has blossomed into the vision of a fully planned community where every need is met and funding is shared between families, community, state, federal, private and charitable organizations.

Taking the military base concept and customizing it to fit the needs of families living with disabilities should not be a difficult task. There would be job opportunities for the residents both typically abled and differently abled. Private industry could certainly set up shop as the need for local business would be necessary. The community would include recreational facilities with pool, indoor sports and games, meeting areas, parks, etc. Housing would offer varied options including small single family, apartment, townhouse, etc. as well as dormitory style for single adults both assisted and independent.

The housing would be leased and funding would be available through a combination of individual family, private, government and charitable. For example, a retired couple would be able to lease a two bedroom home to share with their adult child with Autism until they are unable to continue care, at which time the adult child would be referred to one of the apartment or dormitory settings. This would allow the individual to remain in the community but adjust to a supported living situation while continuing with other normal routine.

FUNDING

Families would pay for their Autism community home just as they would for an outside home. The monthly lease would be used for maintenance of the home itself, community maintenance, and other associated costs as well as a small percentage which would be designated for a fund which helps pay for assisted living when a family can no longer care for the resident adult. In the case of a single adult with no family assistance, the disability or social security for that individual would go toward the living expenses.

The beauty of the commune setting is that jobs would be available for individuals within the community in many areas. Landscape, janitorial, office, car wash, recreational facilities, etc. would create need for regular employees. These jobs would offset the cost of community maintenance as well.

Private funding through charitable organizations would be utilized for general or specific needs and public funding would be shifted from more costly individual support to a community support program.

LIFESTYLE

As an individual with Autism reaches adulthood, they have the same social needs as typical individuals do. Social gatherings, interaction with peers and family, expression through music, dance, etc. should be part of their everyday life. The opportunities provided through the proposed community would enable individuals to live a full, rich life with all of the things that we sometimes take for granted. Jobs, clubs, activities, shopping, gardening, etc. would be available in a self-contained safe neighborhood, and available to the neighborhoods outside the community as well. Another plus would be the industry that might be attracted to the community. Any industry that addresses the needs of the differently abled person would benefit from a location in close proximity. This of course is a win-win for all concerned. Tax revenue for the city that the community is located in, clients or customers for the business, and services necessary for the everyday life of a person with special needs.

STAFFING

Behind the scenes would be the administrative staff, operational staff, etc. all paid through a variety of sources. An example of such a private organization might be the YMCA which is supported through a variety of sources including self supportive client based income. The supported living care team would be professionals dedicated to the health and welfare of each resident. This care team would include professionals in the medical, dental, therapy, recreational, transportation, occupational and associated fields. Again, creating new jobs within a city that is willing to open its arms to a community for adults with Autism and their families.

FACILITY PLANNING

Think green and plan the community to reflect the future while saving money on operating expenses. Parking should be on the outer perimeter of the community with walking, biking and small electric vehicle paths in the inner areas. Think vertical for living spaces and services and horizontal for open space and recreation. Use alternative energy sources from the ground up in building and operational planning. Vegetable and fruit gardens with all plant life non-toxic should be edible, purposeful and useful in herbal applications. Because of the unique sensitive diets that many of these individuals would be on, careful planning would be considered for the type of food businesses that lease space. Lots of fountains and water play as most individuals with Autism love water. The water process for the community should be interactive and recycled as much as possible with obvious sanitary considerations but with a mind toward conservation as well.

CONCLUSION

While I realize that this proposed community sounds like a commune or socialist society and that public funds would not normally be allowed to support such a venture, isn’t time we look outside the box? Are we so caught up in what is or is not the responsibility of society that we forget about our humanity? The reality is that these individuals are here and will be here for quite a while. They will grow older, they will need care and they do deserve to live their lives in the most comfort we would afford ourselves. Much like a retirement community, this type of community must be considered a unique exception in equal housing laws, with a balance of public and private funding and a labor force made up of communal shared responsibility it is a winning proposition for everyone concerned.

Cheryl Ann Hunter

Autism Insurance: Mom wins!

EMK — Tue, 01 Apr 2008 23:48:39 EDT

From CNN:

----BEGIN ARTICLE----

Mom wins fight for autism insurance

By Justine Redman
CNN

LEXINGTON, South Carolina (CNN) -- Ryan Unumb just turned 7 years old. He has about 100 words in his vocabulary, even if they are difficult to understand. He's potty trained. He loves playing with water. He follows instructions, he asks for food when he's hungry, and he gives lots of kisses.

The law named for Lorri Unumb's son, Ryan, doesn't apply to him. Their family is self-insured.

He's not where a 7-year-old should be developmentally, but for a child with severe autism, his parents are thrilled with his progress.

Lorri and Dan Unumb attribute these achievements to the 40 hours of intensive therapy Ryan gets every week. Tears streaming down her face, Lorri says they know they're lucky they can afford the team of private therapists who spend all day at their house outside Columbia, South Carolina.

"I've met so many other moms who were doing the best they could, and I just wanted to say to them, 'You know, an hour a week of speech therapy for your child is never going to make him better,' " the mother of three says.

"But I didn't want to tell them what they needed is 40 hours a week of therapy, because there's nothing they can do to buy that."

Nothing they can do because most medical insurance policies generally don't cover autism treatment, and it's too expensive for many parents to afford out of pocket. Ryan's therapy costs between $70,000 and $80,000 a year. That's Lorri Unumb's entire salary.

She and her husband are both lawyers; after Ryan's autism was diagnosed five years ago they sold their house, downsized and sacrificed to cover costs.

"It's not like you read your insurance policy and you can see a specific exclusion," Lorri Unumb says of the early days after Ryan's diagnosis. "We submitted bills, and we'd get denials back that said 'experimental... denied,' or 'provided by a non-licensed provider... denied.' Or sometimes the insurance companies would say 'this therapy is educational in nature, not medical... denied.'"

As a lawyer and a law professor, Unumb decided to do something about it, to force insurance companies in South Carolina to cover autism.

She wrote a bill, recruited other parents to help her lobby state legislators, and two years later, got the bill passed. Known as Ryan's Bill, it will go into effect as Ryan's Law in July.

Ryan's Law mandates that insurance companies provide up to $50,000 a year for behavioral therapy up to the age of 16. It also prohibits insurers from refusing other medical care to children because of their autism. It doesn't, however, apply to people or companies who are self-insured, such as the Unumbs.

Similar laws have already been passed in Texas and Indiana, and campaigns to do the same in other states have the support of the advocacy group Autism Speaks.

The health insurance industry argues that so-called "mandates" like this ultimately do more harm than good.

"It's not that we oppose a particular mandate," says Susan Pisano of America's Health Insurance Plans, a Washington-based association that represents health insurers. "We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed."

But as for why autism isn't covered in the first place, the industry insists that behavioral therapy is an educational measure, not a medical one, and therefore not its bailiwick.

"I think that it's perfectly understandable that if you are diagnosed with a condition, or a family member is diagnosed with a condition, you want to get services," Pisano says. "Traditionally those services have been provided through early intervention programs for children in the 0-3 age group, and by schools for children who are older."

Pisano says the real issue is one of public policy. "We're seeing around the country, as the number of children along the autism spectrum is increasing and as budgets are being cut back, we see a move to transfer responsibility for some of the services [from the government] to the health care system."

For the Unumbs and many other parents though, the bottom line is that their child's autism was diagnosed by a doctor, not a teacher, and they want the coverage they feel entitled to after years of paying insurance premiums.

Lorri Unumb was so inundated by phone calls from parents of children with autism around the country wanting advice on how they, too, could go up against one of the most powerful industries in the nation and win, that she and her collaborators started holding open workshops to explain how they'd done it.

While admitting that she might not have done it if she'd known how hard it would be, Unumb regularly gives impassioned talks on how to garner grass-roots support, how to lobby state legislators and get signatures on bills.

"If you have a child with autism, you're exhausted all the time. And the last thing in the world that you have time to do is to take on the insurance industry. That's why it's just persisted this way for so long, it's that the very people who have the motivation to get the coverage just can't do it," says Unumb.

But even with Ryan's Bill passed, she cautions, it's not over yet. "I've been contacted by a number of people from around the country who have told me that they're planning to move to South Carolina because of Ryan's Law. That's both gratifying and scary. ... It's gratifying because I love to see as many children as possible take advantage of the new law. It's scary because it hasn't been implemented yet, and it's an insurance policy so there are going to be all kinds of issues with implementation."

Justine Redman is a CNN producer in Washington.

----END ARTICLE----

There may be hope for the rest of us...

EMK

Autism Facts

Joy — Thu, 27 Mar 2008 22:23:46 EDT

I found this in a journal at cafemom.com

Did you know…

1 in 150 children is diagnosed with autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism

Incidence vs. Private Funding

Leukemia: Affects 1 in 25,000 / Funding: $310 million
Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
Autism: Affects 1 in 150 / Funding: $15 million

National Institutes of Health Funds Allocation

Total 2005 NIH budget: $29 billion
Of this, only $100 million goes towards autism research. This represents 0.3% of total NIH funding.

This information can be found at http://www.autismspeaks.org/whatisit/facts.php

ASA Statement on Vaccine Injury Court Case

Jeff Sell — Sun, 09 Mar 2008 13:41:23 EDT

ASA Statement on Vaccine Injury Court Case

On March 6, 2008, the major news networks reported on a National Vaccine Injury Compensation Program case in which liability was conceded based on circumstances surrounding Dr. and Mrs. Poling's 9-year-old daughter's autism. Medical personnel at the Division of Vaccine Injury Compensation, Department of Health and Human Services concluded that the facts of this case met the statutory criteria for demonstrating that the vaccinations Hannah Poling received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

Individuals living with autism need help today, and this case illustrates the need for the medical community to probe further into environmental causes of autism. The Polings, like all families affected by autism, deserve to be heard and supported in their journey raising their daughter. While we don't know the cause for autism, or its interaction with other conditions or environmental aggregators, we need to focus today on what works to maximize the potential of people with autism to help them live meaningful, productive lives. This has always been ASA's mission and we will continue to advocate for research, family and individual support, and lifespan services for people across the autism spectrum.

ASA believes that the science of autism causes and treatments need to be more vigorously researched. We hope that primary decisions will be reached through thoughtful dialogue by parents and professionals on medical research and comprehensive treatment and services, not court rulings.

Sincerely,

Lee Grossman
President and CEO
ASA Member since 1991
Parent of a son with autism

Vaccines and Autism, Is there a Link?

Jeffrey Dach MD — Fri, 07 Mar 2008 14:20:08 EST

Republican Nominee John McCain has recently questioned a link between vaccines and autism.

Anyone have Barack Obama's thoughts or position statement on this matter?

Autism & Early Intervention - Our Miracle Story

Paula in St Paul — Mon, 03 Mar 2008 16:32:33 EST

One of the most important issues to me is autism - not just finding a cure but also early detection, education and adult protection. My daughter Fiona is the absolute example of how early intervention can change the world - and how much more education & funding is going to be crucial to all people with autism.

1 in 150 children has autism. I do not have a position on vaccines, simply because I do not believe that was a factor in Fiona's development. Maybe someday I'll have the time & energy to find out "why" my daughter has autism. Right now, I'm too busy making sure that autism doesn't have my daughter.

****************************************************************

One year ago this month, Fiona said "Bye bye" to her brother as he left for his second deployment to Iraq. My son the Marine burst into tears.

Not because he was leaving his family or facing an uncertain future, but because that was the first time Fiona had ever spoken to him. Or said "Bye bye" to anyone. It was the first time my 27 month old daughter had ever expressed herself without being prompted.

Fiona is my third child. Both my son & my other daughter Alexa were highly verbal and bright. I've grown up literally raising 5 younger siblings, as well as having two children of my own and babysitting countless others. When Fiona didn't smile, or reach out her arms to be picked up or respond to her name by about 8 months old, I instinctively knew that there was a problem. By 10 months old, I was convinced.

Our family doctor dismissed me immediately. "She can't have the "A word" (yes, he called it the "A word") - she's looking to you for comfort." While it was true that Fiona was cowering in my lap, that didn't change the fact that she also was frantically flapping her fingers ("stimming") and did not answer to her name. Or look at people. Without my doctor's referral, there would be no screening for "the A word" unless we were willing to pay thousands of dollars to various clinics - after waiting for months on a waiting list. And so we waited and I went online.

At about 14 months old, I went back and started in on the doctor again. He smiled benignly and told me I was over reacting. "Lots of kids suddenly begin talking at 2 years old" was his wisdom. But Fiona was not only non-verbal - she was also refusing to eat solid food, make eye contact or respond to her name. She had been nicknamed "Zen Baby" or "Buddha Baby" because she was so calm and peaceful and quiet in public. Flight attendants complimented me on what a "good baby" she was. Fiona's autism was not a problem because Fiona was not a problem.

But I was.

I made monthly trips to the family doctor until finally, to shut me up, he wrote the Golden Ticket.

By the time I walked into the clinic with Fiona, she was 20 months old. I had given her the CARS test,which is used by professionals to measure where a child falls on the autism scale. My score was 43, which is Severely Autistic. I had been working with her day and night from the first day I suspected autism, using whatever therapies or tools or tricks I could find online and she was a 43. I shudder to think where she would have fallen had I not recognized the signs.

I was wrong.

The specialists measured her as a 45. Even worse than I thought.

I took no joy in being right. I also wasted no time. I got on the phone & learned that services were available through the school district. Appointment set. Then I called the Children's Hospital to be placed on waiting lists for Speech, OT & feeding clinics.

Imagine my fury when I learned that my husband's medical insurance covered all of those therapies - as long as the diagnosis wasn't autism. Another issue for another blog.

The St Paul School District was amazing. Unbelievable. As long as I live, I will never forget how supportive everyone was. We had Fiona's educational assessment within a month of my call and another week after that, we began having 2 therapists visit. One hour each, once a week. Not the 40 hours most experts recommend but it was all the school could do. I made it my business to fill the other 38 hours.

Now, Fiona is 3 years, 3 months old. She has been in a classroom with other autistic children since September. We had her assessment last week, using the CARS test and taking all of the observations of her educational team and family into consideration.

30.5

Fiona's score is 30.5. Had it been 30, she would no longer qualify for special education. She went from Severe to Mild in less than 2 years. We were warned that she was developmentally disabled and that she would most likely be non-verbal her entire life in August 2006. Today, her skillset ranges from 36 months to 54 months.

And her vocabulary? We have lost count of the number of words.

As I type this, Fiona is reciting her ABCs to her Elmo doll. She and I spent time this morning working on spelling and word recognition. She can sing several songs, can count to 40, identify colors, spell the names of everyone she knows as well as several common items and she tells us what she needs. Fiona says "please" and "kank you" appropriately. She hugs, kisses and climbs up on us. Fiona not only adores her sister but can also point to her brother's picture and say "Jay" or "Colby" (my husband's son, who lives in Omaha). When my cell phone rings, Fiona hears the ringtone and says "Obama Mama!" Fiona loves animals and can identify any animal, from a cat to a yak. She talks to other children she encounters. Fiona laughs at silly jokes and cries when other children are sad. We are hearing 6 word sentences from a child who was non-verbal one year ago. Her father has been the ultimate "good cop", coming home every night from work & getting down on the floor with her to wrestle or build towers while I have been the "bad cop" who drills her on language skills and makes her pick up crayons when she'd rather throw them. Together, we have all unlocked the doors into Fiona's mind and every single day, we connect a little more.

Without a doubt, Fiona would not be functioning without early detection and intervention. Had I not been educated enough to recognize the signs, she very easily could have just drifted along until 4 or 5 years old, because she was "so good". Her doctor, who is otherwise a good physician, was completely wrong in his assessments of her. To this day, he still insists that she wasn't "as severe" as we all thought. Without early detection, Fiona could very easily have retreated to a place where we would never be able to reach her, destined to be trapped in her own world for the rest of her life. Instead, Fiona has flourished. She has found her voice and continues to explore our world.

The defining moment came when her teacher told me that she was recommending that Fiona not be in her class again in the Fall.

"Fiona has moved to a place where she shouldn't be in an ASD classroom any more," she explained. Fiona will be ready to go into a class with "normal" children who have speech or language disorders, where she will work on her social skills. By age 6, Fiona will be able to be fully mainstreamed into a regular kindergarten class, most likely without any special education label at all. She will not be cured because there is no cure for autism. But she will be recovered and she will be educated and she will be able to communicate her thoughts and feelings and opinions with all of us.

She will be our miracle.

Autism Awareness

Christerbell from Manassas, VA — Thu, 28 Feb 2008 07:23:11 EST

Senator Obama:

Autism is a real problem for a lot of families and available resources to help families are very expensive. Also, locations for speech classes, counseling, and medical assistance are not as abundant as the number of kids diagnosed every day.

In a one parent home (I.E. my brother), decisions to find work from home to care for love ones suffering with Autism are the types of decisions parents are faced with everyday. A decision of this nature can easily turn into a hardship, and the decision not to stay home and be available for speach appointments, counseling and medical appointments causes the child to remain behind in everyway possible.

Would you speak out more about your plans for Autism...

Thank you Senator Obama for all that you have done to inspire change and hope and the feeling that we can overcome all the things (Employment, paying a lot for medical care, but cant use it because of preexisting conditions, student loan, Car taxes - Income taxes - housing tax, high gas rates, poverty, diminishing landmarks etc..) that threatens the idea of "quality of life".

Chris Clincy

A Message to the Superdelegates

Paula in St Paul — Fri, 15 Feb 2008 16:02:42 EST

Right now, my son is in Iraq on his second deployment. I live in terror of opening my front door to face a Marine chaplain. His fiancee is counting the days until he arrives home to marry her - and then leave again. Right now, my son is coping with the suicide of one of his Marine brothers - a suicide he witnessed as they patrolled Ramadi together last month.

Right now, my 3 year old autistic daughter is struggling to make sense of our world. She was diagnosed at 18 months old, ten months after I began badgering the doctor to refer her for screening.

Right now, my 12 year old daughter is in class, surrounded by 32 other gifted students in a room that was built to seat 22. She packs extra snacks every day in her lunch box, not for herself but for the kids in her class whose parents cannot afford to send any. She is a Christian, her best friends are a Muslim girl & an African-American girl - and her first boyfriend is Jewish. She doesn't understand why people have told her this is wrong.

Right now, my credit rating is destroyed because I cannot work due to the needs of my 3 year old. Her therapies are not covered under my husband's health insurance and so, I am her therapist, using whatever knowledge I can find online. My student loan debt is equal to a mortgage. We rent an apartment rather than own a home of our own.

Right now, my cousins who were first responders at the World Trade Center on 9/11 wait nervously for the first signs of cancer from all of the asbestos they inhaled as they searched for their fallen brothers and sisters.

Right now, the Republican Party of Minnesota believes that I am there for them, as I have been for the past 20 years of my life. And they are sadly mistaken.

Right now, I have hope. I needed hope and one candidate stepped up and offered it to me. One candidate is offering hope that my son will be brought home alive and well, that my 12 year old can stop crying herself to sleep out of fear for her siblings futures, that I won't have to outlive my 3 year old to insure that she has a productive life.

Right now, I am standing up to make the changes that I've waited for. I'm demanding accountability. I'm taking back the position of employer of the President of the United States and abdicating my former position of silent partner. Right now, I am urging everyone I know to listen to Barack Obama's message and believe again in America.

Right now.

To the People of Washington State:

EMK — Thu, 07 Feb 2008 01:31:00 EST

Although I live in GA, I was originally from WA. If it were not for your programs in ABA so many years ago, I would not have been able to communicate in these posts now. I ask that you continue supporting autistic youths by voting for Barack Obama this Friday!

ABA programs for autism have been a wildshot depending on the state you are residing. I hope Obama is considering ABA because he does have a PDF for autism. I would like to see ABA spread more uniformly accross the nation. For example, my brother was given ABA in WA, but in NC, ABA wasn't used and he regressed, then it's been a battle here in GA. So please, vote Obama and encourage him to support ABA.

New to the neighborhood

Rachel — Sun, 20 Jan 2008 19:49:53 EST

My stepbrother put me up to this. I am voting in the Virginia primary in a few weeks, though I am still unsure of who I will be casting my ballot for. I am excited about all three Democratic front runners, all three of whom have addressed my issue to some degree. I am a one issue voter - that issue is autism. As the mother of an autistic child, I find that my son's condition informs everything now. His disability is not covered by medical insurance in my state, little assistance is available for his needs, and most special education mandates are unfunded. (No Child Left Behind leaves many in the dust.) Senator Obama's message of change appeals to me, simply because my son's future depends on radical change from what exists now. If you want to learn more about us, go to our blog at www.realityblah.com. Of the campaign, I ask this - please continue to talk about autism. To someone living with it, autism is as important an issue as the economy, healthcare, or the war

Looking to Renew Faith in Government--Jim and Angie’s Story

Michael Negron — Thu, 13 Dec 2007 17:54:23 EST

Jim and Angie Elberfeld of Nashua first joined the Obama campaign online at My.BarackObama.com. Years ago, they also met each other online, both newly single after recent divorces. This web-savvy pair of former Republicans, born and raised in Ohio, are experiencing a rekindling of excitement about politics that they haven’t felt since the early days of Ronald Reagan.

The couple remained solidly Republican until the current president took office. The “scandal and dishonesty” of the Bush Administration, exemplified by the president’s commutation of Scooter Libby’s sentence, convinced the Elberfelds that the nation needed a major course correction.

As the parents of two children with autism, the Elberfelds are particularly frustrated with President Bush’s unwillingness to consider the use of embryonic stem cells for research.

“We are passing up on potential life-changing treatments,” Angie shared with frustration, “for the sake of some black-and-white view of the world.”

The irrationality of the Bush Administration’s position on the issue is even more galling to Jim and Angie because they both work in the health care industry. For Jim, a medical researcher, the refusal to engage in embryonic stem cell research impedes scientific progress. Angie, a nurse, says that she has already experienced harmful delays in the treatment of her oldest daughter, whose autism wasn’t properly diagnosed until age 12. An Administration that stifles research into a cure for autism because of ideological reasons only increases Angie’s frustration.

The Elberfelds have lost faith in the Republican Party and believe that Barack will refocus government to protect the interests of middle-class families like theirs who feel squeezed by the costs of raising healthy, well-educated children while also saving for their own retirement. Jim and Angie are worried about the lack of available support services in New Hampshire for adults with autism. They look at the projected future of Social Security and Medicare and see a rocky path ahead for them if they can’t save as much as they’d like now.

The idea of a President Obama calms their anxieties.

“He can make this country move again and restore our optimism about the future,” said Jim.

Seeing the World Through Different Eyes—Gaby Grossman’s Story

Michael Negron — Fri, 23 Nov 2007 16:34:15 EST

As a high school student, Gaby Grossman of Exeter spent part of her summers studying French at the Concordia Language Village. This total immersion language experience included a day of cultural awareness, and Gaby spent a simulated day in the life of a French-speaking African. This experience, coupled with the years she spent living overseas as one of three daughters to a career Marine Corps officer, helped ignite an interest in the lives of people in other countries.

“I am fascinated by the different ways in which people lead their lives across the world,” she said, “and the ways in which we are still essentially similar, despite our cultural differences.”

Gaby became a World Geography teacher, dedicating herself to helping her students look beyond the boundaries of their upbringing and see the world with a fresh perspective. At her first teaching job in Plymouth, MA, she worked with a diverse mix of students from all economic and ethnic backgrounds. As a result, she relied upon creative teaching methods to reach her kids.

“I think a cultural focus helps broaden their familiarity with the world and their own place in it,” she said.

After five years in Plymouth, Gaby and her husband Dan moved to Exeter, and she gave birth to her son Eli. Through the New Hampshire Early Intervention program, they discovered that Eli was born with autism. Seeking out services and treatments for Eli made Gaby more familiar with the state’s public health system, and her experiences prompted her to get involved with the presidential primary.

“Everything changed when we had Eli,” she recalls. “I want him to have the same opportunities I had, and I know that the outcome of this election will have a major impact.”

Gaby supports Barack Obama because she is inspired by his ability to see the world through the eyes of others.

“Barack’s ability to empathize is at the heart of his leadership skills,” she said. “He can better negotiate with others, inspire greater political participation, and listen to people in the formation of his policies.”

She feels empowered by her work with the campaign, and had the opportunity to have dinner with Barack himself several months ago in Nashua. As an educator, she is comforted by Barack’s emphasis on expanded early education, a major plank of his recent speech on education.

“I have seen how children born in disadvantaged situations often have a limited sense of their own possibilities,” she said, “and after listening to Barack, I know that he sees that as well. He knows that we need to reach these children early.”

Changing Face of Autism: Numbers Rise as More Behaviors Included

Jeff Sell — Thu, 01 Nov 2007 00:18:25 EDT

Changing Face of Autism: Numbers Rise as More Behaviors IncludedDebate Flares Over Rising Diagnoses of Autism, Need for InterventionBy SUSAN DONALDSON JAMES

Oct. 31, 2007 —

At the age of 2, Arik Dahlen would first greet a new playmate with an intense stare. Then he would push the child over.

His mother, Kari Dahlen of Lafayette, Calif., noticed other odd behaviors, including language delay, so she spoke to her pediatrician.

"The doctor initially dismissed it," said Dahlen, but a year later Arik unexplainably got on all fours on the examining room floor and began meowing loudly like a cat.

"Suddenly the doctor was overexcited and said, 'Why didn't you talk to me about this earlier?'" said Dahlen. "Clearly this was not normal for a child."

Arik was later diagnosed with PDD-NOS (pervasive development delay, not otherwise specified), a milder form of autism that is grouped among a wide swath of autistic behaviors.

For decades, the incidence of autism in the United States was considered to be about 1 in 2,000 children, according to the Centers for Disease Control and Prevention. Now, using improved methodology, the incidence is believed to be about 1 in 150, a statistic that is even higher for boys 1 in 94.

Early Diagnosis Key

"This is a major public health problem, but we are not using the term epidemic," said Marshalyn Yeargin-Allsopp, a CDC pediatrician.

Now a debate is raging over whether the apparent spike in autism is a result of more cases or the inclusion of less severe behaviors like Arik's.

Some doctors say autism advocates have over-reacted, creating new medical pathologies for milder cases of social awkwardness that were once considered a variation of normal.

Nevertheless, medical experts agree that more and early diagnoses are leading to better care for those affected.

This week, the American Academy of Pediatrics released two new reports to help pediatricians recognize autism. Intervention before the age of 3 can dramatically change outcomes, they say.

"Autism definitely makes the list of many parents' top anxieties," said Rebecca Odes, author of "From the Hips" and parent advice columnist for baffle.com.

"Parents are left watching and waiting to find out if their child develops any of the symptoms," said Odes. "Many of the warning signs of autism are also common in babies who don't have autism."

Autism is defined by significant impairments in social interaction and communication. Many children have unusual ways of learning, paying attention or reacting to different sensations. Children can range from gifted to severely challenged, according to the Florida State University Center for Autism and Related Disabilities.

The statistics on autism can be misleading when comparing earlier studies in the late 1980s and 1990s, a time when different diagnostic criteria was used, Yeargin-Allsoppa noted.

Now, the CDC uses "active surveillance," rather than just receiving reports, and consistent rubrics to count children.

To put autism in perspective, about half the number of children diagnosed with autism three in 1,000 have cerebral palsy. One in 800 has Down syndrome; only 1 in 1,000 has hearing or vision loss. But 9.7 in 1,000 are diagnosed with mental retardation.

Overall, a staggering 17 percent of all children are affected by a large group of learning disabilities, including autistic behaviors. "The impact of this is huge," said Yeargin-Allsoppa.

The "triggers" that the CDC includes in its statistics are so broad that children like Arik with symptoms some call "autism lite" are now included. At 6, he is in an inclusive first-grade classroom with extra help for speech therapy and social skills training.

'Follow Your Instincts'

Today, Arik has made friends and is doing well academically, but his mother said the road to help was rocky.

"For two years, we jumped through crazy hoops and they didn't know where to send us," said Dahlen, whose son did not exhibit the classic symptoms of autism.

Before his diagnosis, doctors told Dahlen, "he would never go to college, was a menace to society and would end up on drugs," according to his mother. "Every step of the way, I listened to my instincts, rather than the doctors."

Yeargin-Allsopp of the CDC hopes that new screening will provide doctors with the tools to do a better job. But, she said, "there has to be a balance."

"We don't want to miss children who have the potential for serious problems," she said. "One the other hand, we don't want to unduly alarm parents when there is no cause for concern."

Autism advocates while well-intentioned cull more research dollars. "I won't say it takes away from other disorders, but [they] somehow influence Congress and have a better opportunity to see that their interests are funded," she said.

Michael Noetzel, neurologist-in-chief at St. Louis Children's Hospital in Missouri, said even though incidences of childhood seizures and epilepsy are higher, attention to autism is long overdue.

This new focus on autism could have a positive impact on public policy and research dollars in other neurological disorders and normal brain development.

Public awareness has taken away the stigma, said Noetzel. "In my practice, autism has gone from a diagnosis families wanted to avoid and didn't want to talk about to somewhat of a relief."

New screening and proper diagnosis if it is useful in helping the child is a good thing, he said. But overdiagnosis can "make things not better, but worse" for children, he said.

Can Statistics Lie?

"Society has a role to lessen impact of disability," said Noetzel. "The kid who didn't fit in and was a little odd now we are saying he has a disability."

"The million-dollar question is, are we making their lives better?" he said. "I don't think we have that information."

Dr. Jerold F. Lucey, editor of Pediatrics magazine, and on the faculty at University of Vermont College of Medicine, said he believes the CDC numbers are high.

"It used to be with a lot of children you didn't know what was wrong with them," said Lucey. "Some were good at school and others were slow," he said. "Society doesn't want to accept such children, and they turn it into a disease."

Still, the Autism Society of America estimates that CDC statistics are low. They say the condition affects 1.5 million Americans at a cost of $35 billion annually.

"The public awareness awareness campaign is warranted and should be heightened," said Marguerite Colston, the society's communications director. "There are more kids with it, even when you account for better diagnostics."

Colston, of Bethesda, Md., has firsthand experience. Her 7-year-old son Camden was diagnosed at the age of 4, but she noticed symptoms at just 6 months.

Camden would not look at his mother or babble or play patty-cake. He didn't walk until he was 3 years old and is still nonverbal.

Colston believes early screening would have made the difference in her own child's outcome.

"There is no cure, but we have a better shot at managing the symptoms and dramatically improving lives," said Colston.

"The hardest thing is the fatigue factor," she said. "Getting them to communicate takes so much energy. Every day there is a new challenge. There's a lot of hope, but it's hard finding that light of hope."

ASA San Diego Offers Resources and Information to Families with Autism in Wake of Fires

Jeff Sell — Fri, 26 Oct 2007 11:45:19 EDT

Local chapter of largest membership organization dedicated to autism
          spectrum disorders rallies to assist special population

    SAN DIEGO, Oct. 26 /PRNewswire-USNewswire/ -- The San Diego County
Chapter of the Autism Society of America (SDASA), together with TACA and
the Autism Society of America, are offering information and assistance
resources to anyone affected by an autism spectrum disorder and who has
been impacted by the San Diego County wildfires.
    "Offers of support for fire victims from both the local and national
autism community have been remarkable," said SDASA president-elect Cherri
Cary. "We have resources available for displaced families."
    Evacuees are urged to contact the SDASA at (858) 715-0678 or e-mail
them at info@sd-autism.org. The chapter will identify specific needs and
provide assistance as they are able, working with the generous members
throughout the county, state and nation.
    Phone calls and e-mail contacts will be returned as quickly as
possible. Volunteers will respond within 24-36 hours. Concerns of an urgent
or emergency nature should be directed to the county 211 or 911 call
centers.
    "ASA joins with its members all over the nation to offer its support of
all citizens in the California counties affected by the wildfires," said
Lee Grossman, President and CEO of the Autism Society of America. "As with
other national disasters, we continue to be so proud of our chapters and
their rapid, caring response to families living with autism."
    ASA is the largest, oldest member organization dedicated to autism in
the world. Together with 190,000 members and supporters across 206 chapters
in the U.S., ASA's mission is to improve the lives of all affected by
autism-- individuals with autism, their families and the professionals with
whom they interact. For more information on autism or ASA, visit
http://www.autism-society.org or call 1.800.3AUTISM (1.800.328.8476).

A life dedicated to being an autism advocate

Jeff Sell — Tue, 16 Oct 2007 10:05:36 EDT

A life dedicated to being an autism advocate

LAKE CHARLES, La. -- Having a child diagnosed with autism spurred former Dr. Ruth Christ Sullivan, a former Lake Charles resident, to four decades of service in helping to make sure people with the disorder and their families received the support and services they needed.

Sullivan is retiring at the end of this month from a career that has taken her across the country and around the world.

"It has been an interesting, engaging and challenging career," she said. "When I first began, people did not know what autism was. I would tell someone I had an autistic child, and they would get it confused with 'artistic.' Now just about everyone knows what the term means."

Sullivan's son, Joseph, was diagnosed with autism in Lake Charles just before he turned three.

"We were lucky to get a proper diagnosis then," she said. "There was a young child psychologist that came to Lake Charles once a month from Beaumont. I had noticed a little odd behavior in Joseph and knew that something was different with him, so we had someone see him. I had heard the term autism in grad school, but did not know what it meant."

The family moved to Albany, N.Y., where Sullivan's career as an advocate and lobbyist began.

Two others physicians in Albany made the same diagnosis.

"Back then, physicians were not that familiar with autism, but both the physician and child psychologist who saw Joseph in New York had worked with Leo Kanner, the man who had coined the term autism," Sullivan said.

Her next step was to find out what to do. How was Joseph going to be able to go to school?

She said she organized a group of parents and "because of us, New York became the first state to legislate that children of school age in mental institutions must be educated. That was the first legislative work we did, then we began working to get the kids in school, and began making progress."

The Sullivans soon moved to Huntington, W.Va., where she started a local and state society and worked for laws mandating education for the mentally disabled.

In 1974, West Virginia became the first state to specifically include autism in its mandatory education laws with the encouragement of the West Virginia Society for Autistic Children. The West Virginia law preceded the federal Individuals with Disabilities Education Act in 1975. That act guaranteed a free and appropriate education for all children with disabilities.

"I became a lobbyist, organized parents and was able to help get money for two studies," Sullivan said. "The first was an analysis of what was being done in education for children with autism. I applied for another grant on a study of services for all ages, so that something could be done once kids with autism finished school.

"As a result of the study, we made 28 recommendations to the state government. I was looking at that list of recommendations not too long ago, and we have accomplished every one of them here in the Huntington area."

The recommendations were not acted on immediately.

"When I saw that no one was going to do what was in the recommendations, I created the Autism Services Center (in 1979), which set out to do what needed to be done," she said.

Her son was 15 by the time he had a legal right to an education.

"Luckily, by the time we got to Huntington, there was already an autism classroom set up. It was one of the first in the country," she said.

Joseph attended middle school and high schools in Huntington.

"We had to fight to get him in, but he had a wonderful teacher and learned so much there," Sullivan said. "Each step along the way, the agency would work to provide services that were not provided by the state government then."

The advances advocated by the agency also offered a respite for the parents of autistic children.

"Just being able to have someone take the person with autism out of the house for a while is a big benefit to the parents," Sullivan said. "Another thing we did was train the parents about what their rights were, what services were out there."

Her advocacy work in West Virginia consisted from consulting and doing some writing from her home. Then, the state asked her to assist with an 11-year-old autistic girl from Huntington.

"I drew out a plan and found some staff to help with her and asked (the state) to give me the money, and they did," she said. "They called with a few more, and we found help. It grew from there."

The Autism Services Center now has 13 homes with one-one-one staff around the clock, serving 280 people of all ages. About a third of them have autism.

"We provide services from diagnosis to death," Sullivan said. "Our clients live three to a house in nice homes in nice neighborhoods. They all have jobs and a job coach goes with them. The ones who are school age attend school. It is remarkable to see the progress they make."

Fun with cause at Autism Move-A-thon

Jeff Sell — Tue, 09 Oct 2007 13:45:20 EDT

Fun with cause at Autism Move-A-thon
By Alexa JamesOctober 08, 2007
Times Herald-Record

Montgomery — The scene at the county park yesterday looked sort of like a tailgate, with vehicles lining the grassy hills and hot dogs and hamburgers on the grill.

And sort of like a rock concert, with live music and crowds in souvenir T-shirts.

And a lot like a recess gone wild, as hundreds of kids with painted cheeks and sticky mouths raced around Thomas Bull Memorial Park for the annual Autism Move-A-Thon.

Organized by the Mental Health Association in Orange County and a cadre of parent volunteers, the Move-A-Thon urged folks of all ages to walk, run or dance a mile to raise awareness about autism, the nation's fastest-growing developmental disorder. Roughly 1,200 people attended this year.

Studies show the number of children diagnosed with autism has been increasing 10 percent to 17 percent annually. In 1990, about 1 in 10,000 kids developed autism. Odds are now 1 in 150.

"It's an epidemic," said Nadia Allen, executive director of the Mental Health Association. Events like the Move-A-Thon, she said, give families living with autism a chance to network with others. The idea is to share information and help society better understand the disorder.

Mild to severe autism generally appears between 15 and 20 months of age. In most cases, a child who seems to be progressing normally will start to regress, losing physical abilities, speech and social skills. About 40 percent of autistic people never speak, and many respond unusually to sounds and touch.

For parents, the behavior of their autistic children can turn simple activities, like going to a playground or to church, into uncomfortable situations.

"Sometimes other people who don't have special kids are indifferent toward Sammy," said Adelaida Escamilla of Newburgh, whose 6-year-old son is autistic. One day, when she was in the grocery store and Sammy was making loud noises, someone told her to make him "shut up."

"Sammy is sensitive," she said. He can tell when someone is angry with him or poking fun.

"Sometimes families with this kind of child can't go outside with their kids," she said.

That was not the case yesterday. Kids ricocheted inside inflatable castles, banged on drum sets, rode a miniature choo-choo train and helped a fairy with purple hair do magic tricks.

The Escamilla family wore blue tie-dyed T-shirts that said, "Someone I love has autism. Ask me how you can help."

The Move-A-Thon is a major fundraiser for the Mental Health Association's autism outreach programs. Last year's event raised about $28,000.

A portion of the proceeds are donated to national autism research groups, but much of it stays local, providing hundreds of mini-grants — stipends of as much as $250 — for families to receive better autism care. Parents use the funds to attend conferences or therapies not covered by insurance plans. Some buy books, special toys, nutritional supplements and safety gates.

To learn more about autism and ways to get involved, visit www.mhaorangeny.com or call 294-7411.

Hudson benefit raises awareness about autism

Jeff Sell — Tue, 09 Oct 2007 13:30:06 EDT

Hudson benefit raises awareness about autism By Betty O'Neill-Roderick Special to the Beacon Journal
Published on Monday, Oct 08, 2007
The second annual ''Pull the Cork on Autism Benefit'' drew more than 100 people Thursday evening to the Vue Restaurant in Hudson. Kelly Shaw chaired the event, which featured wine tasting, gourmet foods, a wine basket raffle and a silent auction.
Lisa Weaver, president of the Greater Akron Chapter of Autism Society of America, said all funds raised would be used to provide a first responder training program. On Dec. 4, Dennis Debbaudt, a world-renowned speaker, will present two workshops for first responder and a workshop for parents.
Joy Spencer greeted guests, Rich Gleason and Art Jenson provided music, and Matt Patrick of WKDD was master of ceremonies. Jim Orenga, Mike House and Bob Treend tasted wine from around the world provided by Paul Tolchinsky and his daughter, Heidi, of Wineworks. Roger Thomas of Piatto Novo seared sea scallops in an orange reduction sauce for guests, while across the way Rich Carson, executive chef at the Vue, offered fresh goat cheese ravioli.
In the center of the restaurant Sue Dallman, Nancy Charlins, Rob and Christi Bowser and Matt Force enjoyed hors d'oeuvres, while Tray McClowry and Pat Shaw watched the Tribe game.
Traci Ezzo offered vintage wine and Liz Rhoades sold tickets for a raffle. Nevada Reed, Sue Corp, Sherri Bevan Walsh, Bethany Forgione, Lindsey Trump, Marilyn Richardson and Laurie Cramer looked at auction items. Gus and Janet Gallucci of the Cleveland Chapter of ASA enjoyed the event with Carey Bartlett, Stacey Bartlett Radwany and her husband, Tim, and Tempe Zucker.

Autism: The New Black?

Jeff Sell — Sat, 06 Oct 2007 23:06:32 EDT

Autism: The New Black?Categories: for a good cause

We're not poking fun (or making light of the fact that 1 in 166 kids are diagnosed with autism). We just couldn't help but notice that it's become the cause célèbre lately.

Jenny McCarthy has been spreading a message of hope via the talk-show circuit with her new book, Louder Than Words, which recounts her son's recovery from autism.

America's Next Top Model features a 21-year-old stunner, college student Heather, with Asperger's syndrome. As host Tyra Banks chirped in one episode, "She's making a whole lot of autistic kids go, 'Wow.' " Well, not necessarily the kids, but definitely some of their families and friends.

Meanwhile, Jason Alexander, Minnie Driver, James Franco, Dermot Mulroney and other bold-faced names will perform at the 5th Annual Acts of Love Fundraiser at LA.'s Geffen Playhouse on Oct 15.

And if that's not enough, Brad Pitt's been rumored to donate to Cure Autism Now—need we say more?

Okay, just one more thing: This is one "trend" we'd love to see cured. And we're done.

Our view: Challenge of autism

Jeff Sell — Sat, 06 Oct 2007 23:04:18 EDT

Our view: Challenge of autism

Florida Tech center puts Brevard on the map in treatment of puzzling disorder

Early diagnosis and treatment of autism sometimes make the difference between an individual needing a lifetime of supervision and care or more independence.

Soon, that will be possible for more Brevard County residents with the disorder, thanks to an Autism Center to be built on the Florida Tech campus in Melbourne.

Autism, a spectrum of disorders that cause impairment in social interactions and communication, affects about 1 in 150 children, according to the Centers for Disease Control and Prevention.

More than 3,000 Brevard residents could have the disorder, the CDC says.

And the numbers of diagnoses is going up each year, in what has been called a growing epidemic.

That increase appears to be born out in Brevard, where the school district this year is serving 325 children with autism. That's up from 220 in 2002-03.

The causes of autism haven't been determined. But research shows young children who receive the therapy the center will offer -- which uses rewards to improve language and social skills -- are more likely to eventually attend regular school.

Often parents can't find or afford the therapy, however.

The new center, to open in 2009, will help fill the treatment gap, serving as many as 40 individuals a week -- mostly from Brevard -- and train parents and teachers in the therapy.

What's more, some financial help may be available. And, since there's no comparable site in Florida, it will spotlight the Space Coast as a hub for autism screening, research and training, possibly bringing in related businesses.

Autism research doesn't come without controversy.

Many parents of children with the disorder seek unproven alternative treatments. Some also hesitate to vaccinate infants and toddlers, fearing a link between autism and thimerosal, a mercury-based preservative once routinely used in children's vaccines.

Scientific studies haven't established any connection. But mercury, a neurotoxin, is proven to cause damage to the human central nervous system and was removed from most children's vaccines in the 1990s, except for children's flu shots.

That's why Rep. Dave Weldon, R-Indialantic -- who is working to get $2 million in federal funding for Florida Tech's autism center -- is pushing legislation to ban mercury in kids' flu shots by 2008-09.

Another Weldon bill would boost vaccine safety by creating a research oversight body independent from the CDC, which many believe is too beholden to drug manufacturers.

Those are issues deserving of Congress' serious consideration. Parents' distrust of childhood vaccinations and refusal to get them -- whether scientifically valid or not -- puts the larger population at risk for the spread of deadly disease.

If you don't believe it's happening, go to FLORIDA TODAY's social networking site for mothers, brevardcountymoms.com, and read comments in the Long-term Illnesses discussion under the "shots for children" thread.

That said, Florida Tech's new autism center will rightly focus not on unproven treatments and controversies, but on what's known to be most effective in treating the disorder:

Early diagnosis and intense early therapy.

Many Brevard families will benefit from the new resource, as will the larger community.

State looking for input in autism plan

Jeff Sell — Fri, 05 Oct 2007 10:13:52 EDT

State looking for input in autism plan

Jamie Pemrick of Rutland moved to Vermont almost a decade ago with her son, who was diagnosed with autism, in search of quality of life.

At least 80 therapists, counselors, advocates and parents crowded into a conference room in the Asa Bloomer building and listened to Pemrick's story, gathered there Tuesday for a public forum on autism spectrum disorders, hosted by the Department of Education in Rutland.

In the past 14 years the number of children with ASD receiving special education in Vermont has increased from 13 to 582, according to Act 35. The act was signed into law in May.

Pemrick moved from North Carolina, where her son, now 13, was tested and diagnosed through the University of North Carolina's Treatment and Education of Autistic and Related Communication-handicapped Children or TEACCH program. She gave credit to the college program, which helped her with accuracy and early intervention.

"One of the major concerns I have is diagnosing properly," Pemrick, at times choking back tears, told the crowd about Vermont's approach. "These kids are losing out because they are not being properly diagnosed."

The Vermont Agency of Human Services and the Department of Education have been asked to come up with a state plan to provide services to those with ASD from birth to death. The plan is expected to be based on the information gathered at forums scheduled in different regions of the state and through a number of committees already working.

"I'm not able to do it on my own," said Pemrick. "All of us parents are not able to do it on our own."

Her story was similar to the sentiments of a number of parents in the room. Mothers, fathers and practitioners shared their experiences. They highlighted where the state is lacking in care, needed improvements and personal successes.

Two women directed the forum, gathering information at the same time: Claire Bruno, the autism consultant for the Department of Education and Clare McFadden, autism specialist for Division of Disability and Aging Services. After hearing testimonials and suggestions, McFadden listed a number of ideas she had recorded after hearing them more than once.

Concerns and comments from the sizeable crowd emphasized the need for early intervention, coordination of services, continuation of services for adults, looking to local colleges for help in training and testing, more training needed in schools and the medical industry, funding and a regional resource center.

"I think there's a lot of gaps in our system," said Keith Grier, the family services and development coordinator for Counseling Services of Addison County.

Grier talked about the lack of coordination across environments — from home to school, and the lack of in-home services for families.

"I think a regional center would be incredibly helpful," he added.

Parents spoke of frustration with the lack of information about the immunization shots children receive and dietary allergies. Mothers with high-functioning autistic children spoke of fighting for an individual education program at their child's school.

In Vermont children must show adverse effects in order to qualify for an IEP, which can include evaluation of academic success. A number of ASD children thrive academically but display social, sensory and emotional issues.

"Simply, I just wanted Bradley to get an education, but that didn't happen from the moment we got here," said Phelippa Marriner, of Rutland, who moved to Vermont seven years ago.

Her son, now 17, wasn't diagnosed he was until 12 years old.

"High functioning — it's so often misunderstood … My voice has gone unheard and his needs have gone unmet," said Marriner.

Autism is one of the fastest-growing disabilities in the United States and now affects one out of every 150 children born, according to the Autism Society of America.

"We have to continue to raise our voices," Marriner said to the gathering. "It's obvious with the show of people here that this is a serious problem."

San Diego Declares Autism Awareness Day

Jeff Sell — Fri, 05 Oct 2007 10:11:52 EDT

San Diego Declares Autism Awareness DaySAN DIEGO, CALIFORNIA October 04, 2007 Non Profit News

(PRLEAP.COM) Mayor Jerry Sanders of San Diego has issued a proclamation declaring that November 3, 2007 will be Autism Awareness Day in San Diego. Mayor Sanders also recognized the efforts of Autism Speaks in raising awareness about autism and raising funds for research into the causes and treatment for autism.

Autism Toolkit

Jeff Sell — Sat, 22 Sep 2007 18:34:09 EDT

The American Academy of Pediatrics has developing a Toolkit for
Clinicians called Autism: Caring for Children with ASD. It looks very
thorough and has supporting documentation. Anyway, if you are
interested in looking at it, the website is www.aap.org/bookstore. Or
you can call tool free at 1-888-227-1770.

Insurer ordered to pay for autism care -- New Jersey

Jeff Sell — Sat, 22 Sep 2007 18:30:22 EDT

Insurer ordered to pay for autism care
Friday, September 14, 2007

By LINDY WASHBURN
STAFF WRITER

The state Supreme Court has ordered the insurance program for state employees to pay for intensive therapies for a child with autism -- therapies that go beyond what a school district must provide for his education.

The court's decision came with breathtaking speed, less than 24 hours after it heard oral arguments on Tuesday.

Jake Micheletti, a 5-year-old who was diagnosed at age 3 with autism, will receive insurance coverage for behavioral and other therapies he needs, as well as reimbursement for the care his family already had paid for.

Arguing on behalf of his son before the high court was his father, Joseph Micheletti, a deputy attorney general who handles employment discrimination matters. He was opposed by another deputy attorney general defending the state's position.

"It makes a huge difference to us," Micheletti said. The family had taken a second mortgage on its Hunterdon County house to pay for additional behavioral, speech and occupational therapy beyond what its school district provided for Jake. The Michelettis had nearly exhausted their financial resources and were preparing to stop Jake's therapy.

In Autism's Grip

Complete coverage: In Autism's Grip

Forum: A place for parents, teachers and others to discuss the broad spectrum of autism's effects.

* * *By the numbers

• One of every 94 children in New Jersey has autism.

• Boys: 1 in 60

• Girls: 1 in 250

• National rate: 1 in 150

The case applies specifically to the State Health Benefits Program, but it highlights the legal requirements of all insurance carriers in New Jersey. Under the Mental Health Parity Act of 1999, insurance carriers must provide the same coverage for mental illness that they do for any other sickness. The law specifically includes autism as a disorder that must be covered equally.

"We would like to see all insurance companies play by these rules," said Art Ball, a spokesman for the New Jersey Center for Outreach and Services for Autism (COSAC). "Our hope is that this makes it easier for us to work with insurance companies and the State Health Benefits Program so that other families don't have to go through this problem in getting benefits for autism."

"This will be a tool that people can use" when insurance companies deny coverage for autism treatments, Micheletti said.

Under federal law, school districts must provide an appropriate education to all children. But families that want to give their children more therapy than the school system deems necessary have had to pay for it themselves or through private health insurance.

"We're still in the process of evaluating the potential implications of the order and what it could mean to the overall program," said Tom Vincz, a spokesman for the state Treasury Department, which oversees the state benefits program. The program insures more than 800,000 state, county, municipal and school employees and their families.

Horizon Blue Cross and Blue Shield of New Jersey is the administrator of the self-funded state insurance plan to which Jake Micheletti belongs, though the state determines what is covered and what is not. "I'm not sure it [the ruling] applies beyond this individual case," said Thomas Rubino, a Horizon vice president.

Horizon and Aetna say they already comply with the mental-health parity law and provide required benefits for their commercial policyholders, depending on what package customers have purchased.

The state had argued before the appellate court that Jake's therapy was not eligible for coverage because it didn't "restore" him to a previous level of functioning, as speech therapy would restore a stroke victim's previous ability to speak. The state's attorneys also said the state could exclude coverage for autism to hold down taxpayer costs.

"We were facing the end of Jake's chances at a life, literally," said Elizabeth Micheletti, the boy's mother. The family had chosen to pay for Jake's additional therapy privately when he was diagnosed, while pursuing appeals to their benefits plan and then legal remedies.

"We couldn't wait, because therapy delayed would be of no use to him," Elizabeth Micheletti said. The younger an autistic child is when he begins therapy, the better the chances of improvement. New neural pathways can be created to allow him to interact socially and behave more like a typical child.

Although the appellate court found last January that the state should pay for Jake's therapy, the state did not abide by the decision. The appellate court then refused to enforce its own action. That led to the appeal before the state Supreme Court.

As a new kindergartner, Jake now gets nine to 10 hours of therapy each week, in addition to his daily time with an aide in class and his school-based therapies. The additional therapy costs the family $650 to $700 weekly, Joseph Micheletti said.

"He is doing exceptionally well," said Elizabeth Micheletti. "There are indications that he will 'recover' from autism." His math and reading skills are advanced for his age, she said. The couple have two other sons.

After listening to the oral arguments before the Supreme Court, Elizabeth Micheletti said, "I cannot describe what it felt like to be in that room, having Joe talk about what we have gone through for Jake. It was almost therapeutic just to have someone listen and say, 'This is wrong.' "

E-mail: washburn@northjersey.com

McCarthy Calls Carrey 'Autism Whisperer'

Jeff Sell — Fri, 21 Sep 2007 14:02:12 EDT

McCarthy Calls Carrey 'Autism Whisperer'

14 hours ago

NEW YORK (AP) — Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.

"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."

McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.

"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."

McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.

McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."

She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.

"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."

On the Net:

People: http://www.people.com

Schools lagging on autism--IOWA

Jeff Sell — Fri, 21 Sep 2007 13:56:13 EDT

Schools lagging on autismBy: Zhi Xiong - The Daily IowanPosted: 9/20/07Autism spectrum disorders affect as many as 1 in 150 8-year-old children in some areas of the country, according to latest numbers from the Centers for Disease Control and Prevention. More than 90 percent of them grow up to attend public secondary schools.

But educators are lagging when it comes to providing effective intervention at alllevels - preschool, elementary, and secondary - a recent study shows.

Special education receives approximately 9 percent of Iowa's elementary- and secondary-education budget, while Area Education Agencies' special education programs receive around 3 percent, according to the latest statistics.

It is not clear whether funding is the issue at hand, said Sue Baker, the autism services consultant at the UI Regional Autism Services Program. Though she said other colleagues have also seen the published research, any changes to current systems takes time to analyze and implement.

"The findings are not going to change what we do tomorrow, but it's a long-range goal," she said.

The analysis of 55 studies of school-based social skill learning, published in the Journal of Remedial and Special Education, consistently shows therapy such as changing the child's social and physical settings, peer-mediated interventions - in which other children are trained to interact with disabled peers - and even child-specific plans did not significantly improve behavior.

"What they're reporting in schools is there are goals being met and independence is increasing, but this is in a trained context," Baker said.

The National Institutes of Health hiked funding for autism research to approximately $101 million - a more than 80 percent increase - for fiscal 2007. Yet the number of children with autism spectrum disorders, from severe autistic disorder to milder Asperger's syndrome, most notably characterized by impaired social interactions, are still increasing exponentially.

"The field is not advanced enough to tell us all that we as educators need," Baker said.

The child-specific method is used in the Iowa City School District, which includes tailored social skills instruction and schedules to help children "navigate their environment," said Cheryl Kiburz, the director of special services.

Researchers found children who received intervention in school were generally able to use their newly learned behavior in controlled settings. The problem is generalization, or using them in new environments.

One study recommended increasing frequency of interventions and closely matching strategy with specific skill deficits.

"A lot of teachers don't go that extra length," Baker said. "Does that kid use his greetings? Yeah - in the halls where we taught him. But can he do it in a birthday party or community outing or work setting?"

E-mail DI reporter Zhi Xiong at:
zhi-xiong@uiowa.edu

7 new autism laws in NJ signed by Governor Corzine this week

Jeff Sell — Tue, 18 Sep 2007 22:43:10 EDT

7 new autism laws in NJ signed by Governor Corzine this week"The Governor signed A4055/S2558, providing for teacher training in awareness and instruction methods for students with autism and other developmental disabilities for candidates for teaching certificates, current teachers and paraprofessionals. The Commissioner of Education will develop recommendations to address a variety of issues including the characteristics of students with autism and other developmental disabilities; curriculum planning, assistive technology; and inclusive educational practices.

- A4056/S2568, requiring the Early Intervention Program in the Department of Health and Senior Services to address the specific needs of children with autism spectrum disorders and their families. These activities involve developing guidelines for health care professionals to use in evaluating infants and toddlers for autism, ensuring the timely referral by health care professionals of infants and toddlers suspected of being on the autism spectrum to the Early Intervention Program and collecting data on statewide autism screening, diagnosis, and intervention programs and systems.

-A4057/S2559, establishing the New Jersey Adults with Autism Task Force in the Department of Human Services (DHS). The purpose of the task force is to study, evaluate, and develop recommendations relating to specific actionable measures to support and meet the needs of adults with autism. These include job training and placement, housing, and long-term care.

- S/698A4054, which makes changes to the Governor's Council for Medical Research and Treatment of Infantile Autism, renaming it the Governor's Council for Medical Research and Treatment of Autism.

-A4059/S2569, extending funding for autism medical research and treatment. The bill eliminates the five-year “sunset” for the $1 surcharge established under P.L.2003, c.144 for each motor vehicle fine and penalty imposed by the court, which is deposited in the “Autism Medical Research and Treatment Fund.” The fund provides the financial support funding for the grant and contract awards of the Governor’s Council for Medical Research and Treatment of Autism.

- A2306/S2723 requiring the Department of Health and Senior Services (DHSS) to maintain a registry of reported autism diagnoses. The DHSS, in consultation with the Department of Human Services, will maintain an up-to-date registry to include a record of all reported cases of autism that occur in New Jersey; each reported case of autism in which the initial diagnosis is changed, lost, or considered misdiagnosed; and any other information DHSS deems relevant and appropriate to conduct thorough and complete epidemiologic surveys of autism, to enable analysis of this problem, and to plan for and provide services to children with autism and their families.

-A2291/S690, which establishes an Asperger's Syndrome Pilot Initiative in the Department of Human Services. The initiative will provide vocational, educational and social training services to persons with Asperger's Syndrome. This will be accomplished through community-based service sites which offer appropriate support; guidance and education that will enable these individuals to further their education achieve gainful employment and become broadly competent adults who are able to lead fulfilling lives."

via state.nj.us/governor/news/

‘In the right hands’: Kids with autism getting their own school

Jeff Sell — Tue, 18 Sep 2007 22:39:19 EDT

‘In the right hands’: Kids with autism getting their own school Sep 15, 2007 @ 08:35 PMBy Geri NikolaiRRSTAR.COMROCKFORD -

A few weeks ago, school kids filed into classrooms where the teacher and setting were just right for them. The kindergarteners got pint-sized furniture and ABCs on the walls. Preteens had teachers who understand their learning and emotional needs.

High schoolers went to a more adult setting as they prepare for independence.

That situation has never been in place for 7-year-old Sam Haas of Roscoe. Sam has autism. He couldn’t handle a regular classroom and found it difficult in special education programs offered by school districts.

Monday, Sam finally will go to a school where he fits, the new Autism Therapeutic Day School opened by Easter Seals of Metropolitan Chicago at its Rockford branch, 650 N. Main St. Monday will be the first day of school there for 10 Rock River Valley children.

Eventually, the school could serve 50 3- to 21-year-olds.

Sam’s mother, Heather Haas, couldn’t be happier. Sam has been going to the school for tutoring for two weeks. She said he loves it.

“He throws on his backpack and says, ‘Let’s go to school,’” Haas said. “He is largely nonverbal, so for him to say that, it’s fantastic.”

Haas has nothing but praise for the special ed program in Roscoe schools, where Sam attended since the family moved here from Texas in March. It’s just that his needs go beyond what that district could provide, she said.

“He has had some behavioral issues during tutoring at Easter Seals, and they dealt with it so well,” Haas said. “It’s been such a huge relief to know he is in the right place, the right hands, and we as his family are going to get support from the school as well.”

Learning life, social skills
At the Therapeutic Day School, Sam and the other students will be taught life skills as well as academics. Their days will include speech, language, music and art therapy, sensory integration exercises or other services they need. The entire staff, including teachers and aides, a pediatric nurse, social worker, behavior interventionist and medical director, has been trained to serve children whose primary diagnosis is autism. Clinical services will be provided by the University of Illinois College of Medicine in Rockford.

Helping the students learn to socialize will be a big part of the experience because the pupil-teacher ratio will be low, initially about 2-to-1, said Jennifer Sims, administrator of the school.

Sims, a special-education teacher who has an administrative certificate and training in behavior disorders and learning disabilities, worked for the West Central Illinois Special Educational Cooperative for seven years.

The school will run year round, with regular school year holidays and vacations between the seasons. Hours will be 9 a.m. to 2:30 p.m. and, soon, an after-school care program will be offered by the Rockford Park District.

Working with school districts
Most of the initial students come from smaller school districts around Rockford that don’t have elaborate special ed offerings, Sims said. Tuition, which comes to $180 a day, is shared 50-50 by the state and the home school district of the students.

Easter Seals Executive Director Jim Powers said students have to be referred by their local school districts and have to have an individual education plan. The Therapeutic School will continue to work closely with the local school districts, Powers said.

The Rockford school, and another opening in Waukegan, are the third and fourth schools for children with autism operated by the Metropolitan Chicago Easter Seals organization. The Chicago-based agency, which merged with the Rockford Easter Seals in April 2006, spent $415,000 renovating the 50-year-old building on North Main to get it ready for the school.

The demand for therapeutic schools continues to grow.

In 1992, one in 10,000 children was diagnosed with autism, Powers said. Today that number is one in 125, and the number of autistic children grows by 10 percent to 17 percent each year.

“Better diagnosis might account for 50 percent of that increase but as for the rest, right now, nobody knows,” Powers said.

Staff writer Geri Nikolai can be reached at 815-987-1337 or gnikolai@rrstar.com

Congress Returns to Busy Fall Line-Up

Jeff Sell — Fri, 14 Sep 2007 13:47:22 EDT

Congress Returns to Busy Fall Line-Up

Representatives and Senators are back at work, following the month-long August recess. They have their work cut out for them, as several priority bills must be enacted in the coming weeks, including the Children’s Health Insurance Program, the annual appropriations bills, reauthorization of the No Child Left Behind Act and other legislative priorities.

For the autism community, the annual FY 2008 appropriations bills are of particular importance. The House passed its version of the legislation earlier this summer, providing increases to several key autism programs at the Centers for Disease Control and Prevention (CDC), the National Institutes of Health, and the Health Resources and Services Administration. The Senate bill has even greater increases for autism programs, but has not yet been voted on by the full Senate.

By law, appropriations bills must be passed by September 30th, the end of the fiscal year. If that does not happen, Congress will have to pass a “continuing resolution” to ensure that the federal government keeps operating. Under these pressures, it is difficult to predict the final outcome, but ASA will continue its efforts to ensure that critical autism programs receive the funding increases they need.

House Begins Consideration of the No Child Left Behind Act

In 2001, Congress and the President enacted the No Child Left Behind Act to increase student achievement and bridge the education gap. While the measure had broad popular support, it has received much criticism in the past six years amid concerns that teachers were teaching to the test and were not given enough flexibility in administration of the law.

Another key concern of the bill is the treatment of children with disabilities. The Department of Education has adopted several regulations that undermine the ability of children with disabilities to receive a quality education. ASA is working with Easter Seals and other partners to ensure that all children with disabilities receive a quality education, are taught by well-qualified teachers and are held to appropriate accountability standards.

Congress Continues Discussion on CHIP Reauthorization

House and Senate leadership met this week to continue discussion on reauthorization of the Children’s Health Insurance Program, which provides health insurance benefits to low-income children. The Senate bill will provide $35 billion in additional funding, which would cover an additional four million children under the program. The House measure is proposing $50 billion to increase coverage to five million additional children.

The House measure also includes provisions to strengthen the Medicare program, eliminate a proposed 10-percent cut to physician payments and a range of other provisions. In general, the House bill is more generous— especially to individuals with developmental disabilities and their families—and more expensive. The total legislative package (both CHIP and Medicare) costs more than $90 billion. A side-by-side comparison of these bills can be found at http://www.familiesusa.org/assets/pdfs/medicaid-coalition-stuff/crs-side-by-side.pdf.

The program must be reauthorized by September 30, 2007, and both House and Senate leadership have vowed to resolve their differences and pass the bill by that deadline. The President, however, has threatened to veto both measures, citing that they are far too expansive and do not focus enough on low-income children.

UK Study Finds Autism Link to Womb

Jeff Sell — Fri, 14 Sep 2007 13:45:34 EDT

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September 14, 2007

ASA News

10-Year-Old Wins Washington State Bowling Title!

Chance Mair from Marysville, WA, who has Asperger’s Syndrome, won first place in the Washington State Pepsi Bowling Finals in Pullman, WA, this past May. Bowling for 4 years, Chance started bumper bowling on a summer league in his hometown. Although his parents were initially apprehensive, it turned out Chance loved bowling and improved enough to bowl without bumpers. He began getting consistent scores in the 80s, 90s and even an occasional 100. In March 2006, he went to the Washington State Pepsi semi-finals in Tacoma, WA, followed by the state competition in Olympia. Each bowler that bowls 25 pins over their average wins a ribbon; Chance won four for all of his games. The next day, Chance’s picture was on the front page of the sports section in the Olympia newspaper holding up his ribbons!

At this year’s Washington State Pepsi Bowling Finals, Chance finished with a first game score of 109, a second score of 117 and a third score of 126, his highest ever. Chance won a $500 scholarship, a shirt and a plaque, but, according to his mother Christine, what Chance really won was the respect of his peers and adults who didn’t believe he could accomplish something like this.

Advocacy

Congress Returns to Busy Fall Line-Up

House Begins Consideration of the No Child Left Behind Act

Congress Continues Discussion on CHIP Reauthorization

Atlantic Autism Alliance to Hold Meetings

On September 23-26, 2007, a delegation led by the Celtic Nations Autism Partnership (CNAP) and ASA will be holding a series of meetings in Washington D.C., to explore ways in which our nations can improve the lives of individuals with autism on both sides of the Atlantic.

This series of meetings, called the “Atlantic Autism Alliance,” is an opportunity to provoke fresh thinking in both the U.S. and Celtic nations on adapting a rights-based approach for inclusive lifestyles for individuals living with autism and to build a strong alliance with partners that supports the exchange of experiences and knowledge. The unity of nations within CNAP is further enhanced by its new friendship with ASA.

“We are honored to host the entire Celtic Nation Delegation, led by Eileen Bell (former speaker of the NI Assembly) and The Lord Maginnis of Drumglass (vice-president, Autism NI [PAPA]) and look forward to the collaboration that this event will lead to,” said Lee Grossman, CEO of ASA. Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA), co-chairs of the Congressional Autism Caucus, have been instrumental in planning this event and will be working with the group to find ways in which a cross-Atlantic collaboration can become the catalyst for promoting the cause of autism.

Research

UK Study Finds Autism Link to Womb

(condensed from Telegraph.co.uk, Sept. 11, 2007)

Babies exposed to high levels of testosterone in the womb are more likely to develop autistic traits in childhood, scientists say. The soon-to-be-published findings are the strongest indication yet that one of the triggers of autism could be higher than normal concentrations of the male hormone in fetal fluid. The findings support the theory that autism is an “extreme version” of the male brain and points to it being mainly a genetic condition. Previous studies have revealed that testosterone levels in the womb can affect both brain development in animals and social development in childhood.

Professor Simon Baron-Cohen of Cambridge University, one of the world's leading experts on autism, revealed initial details of his new study at the British Association Festival of Science. Prof. Baron-Cohen said, “The idea that fetal testosterone may play a causal role in autism is an existing hypothesis. There's no evidence that it's a causal factor, but this research is certainly consistent with that hypothesis.”

For the full story, including details regarding the study, visit http://www.telegraph.co.uk/earth/main.jhtml?xml=/earth/2007/09/11/sciaut111.xml

Atlantic Autism Alliance ti hold meetings

Jeff Sell — Fri, 14 Sep 2007 13:44:44 EDT

Atlantic Autism Alliance to Hold Meetings

WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAW

Jeff Sell — Thu, 13 Sep 2007 00:21:36 EDT

WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAWBy Cara Noel - September 12, 2007 - 3:55pm Tags: Loretta Weinberg, Joseph Coniglio, Autism,Release Date: September 12, 2007WEINBERG/CONIGLIO AUTISM BILLS SIGNED INTO LAW WEST WINDSOR – A bill package sponsored by Senators Loretta Weinberg and Joseph Coniglio, designed to increase and improve available resources for families and individuals living with autism, was signed into law today by Governor Jon Corzine. The bills were signed at the Eden Institute, a non-profit organization which provides educational and vocational services to adults and children living with autism. Autism is a neurological developmental disability that impacts brain development in the areas of communication skills, social interaction and cognitive function. People living with autism often struggle with verbal and non-verbal communication and social interaction. “According to federal statistics, New Jersey has the highest number of autism cases in the nation,” said Senator Weinberg, D-Bergen. “We are still learning about the autism spectrum disorders, but while we are learning, we must be able to provide much-needed assistance to families living with autism. As the number of residents living with autism increases, we must have the resources in place to provide them with support programs as we work to find ways of decreasing autism rates in New Jersey and around the world.” “The number of autism cases is increasing here in New Jersey, and around the world,” said Senator Coniglio, D-Bergen. “Statistics say that one child in 94 will be born with autism, and we must be prepared to provide their families with the support and resources they need.” One measure, S-2569, sponsored by Senators Weinberg and Coniglio, extends funding for autism medical research and treatment. The new law amends the law that had been in place by removing the five-year sunset provision for a $1 surcharge on each motor vehicle moving violation to be deposited in the “Autism Medical Research and Treatment Fund.” The law will help provide a permanent funding source for autism research. A second measure, S-2568, concerns early intervention programs for children with autism. Under the new law, the Department of Health and Senior Services’ Early Intervention Program (EIP) will be responsible for creating initiatives to help address the needs of autistic children and their families. The EIP will work with the Governor’s Council for Medical Research and Treatment of Infantile Autism and other autism groups around New Jersey to develop treatment guidelines for health care professionals to follow when working with autistic infants and toddlers. The EIP will also be responsible for referring autistic infants, toddlers and their families to different schools, community groups and organizations offering programs designed to meet the needs of children living with autism. “When dealing with autism, early intervention is important,” said Senator Weinberg. “If families of autistic infants are aware of available educational and life skills training, these children can learn how to deal with the disease at an early age. The law will also help to provide support systems for families of autistic children, so that they can share experiences, concerns, and learn more about the autism spectrum disorders.” “All too often, parents of special needs children are left feeling helpless and unable to provide the educational opportunities and support their children need,” said Senator Coniglio. “This new law will create support groups, and help make families aware of the resources that are available to help provide their autistic children with the educational training they need to become productive members of society.” A third measure, S-2558, will make training in autism awareness a condition of teacher licensure. The law calls upon the Commissioner of Education to work with the Commissioner of Health and Senior Services and autism education groups to develop coursework dealing with the characteristics and needs of autistic students. The coursework will be included in the curriculums of every college or university in New Jersey offering teacher or paraprofessional certification. Another Weinberg/Coniglio-sponsored measure, S-690, calls upon the Department of Human Services to develop statewide educational, vocational and social services to help benefit adults living with Asperger’s Syndrome. Asperger’s Syndrome is a developmental disorder characterized by autistic-like behaviors, such as deficiencies in social and communication skills. Those living with the disorder tend to be self-absorbed and often display obsessive or repetitive routines. Asperger’s differs from traditional autism in that it is not usually diagnosed until adulthood, said Senator Weinberg. “By making these resources available to residents living with Asperger’s Syndrome, they will be able to gain increased independence and work toward living as self-sufficiently as possible,” said Senator Coniglio. A similar measure, S-2559, was also signed. This new law establishes the New Jersey Adults with Autism Task Force within the Department of Human Services, to study, evaluate and develop recommendations for support, job training and placement, housing and long-term care programs for autistic adults. Governor Corzine also signed, S-698, a measure to increase the membership of the Governor’s Council for Medical Research and Treatment of Autism. Lastly, S-2306, which requires the Department of Health and Senior Services to maintain a registry of reported autism diagnoses, became law today. “New Jersey’s high autism rate is an incentive to take the lead on autism research throughout the nation,” Senator Weinberg said. “New Jersey is a world leader in many areas of medical research, and it is my hope that this bill package that was signed today will help increase awareness and funding for autism research,” said Senator Coniglio.###

"Putting the Pieces Together" Autism/Disability Resource Fair & Conference

Jeff Sell — Wed, 12 Sep 2007 22:00:46 EDT

"Putting the Pieces Together" Autism/Disability Resource Fair & ConferenceSaturday, October 6, 2007

The Resource Fair is FREE and from 8a - 1:30pm.

The Conference requires pre-registration and is from 9:30a - 5p. See www.autism-society.org/chapter1006 for more information. Click on "View Documents".

Keynote Speakers:

Jeff Sell Director of Goverment Relations for the Autism Society of America

Dr. Stephanie Cave from Baton Rouge on the DAN Protocol and Vaccinations

Steve Rhatigan of Stemark & Associates - Estate & Financial Planning for Special Needs

Louis Geigermann of National ARD/IEP Advocates will talk on Special Education Law

Many workshops covering a variety of topics are offered for the afternoon! Scholarships available - see specific information below!Both conferences are at the same location for your convenience!

New Jersey initiatives target nation's highest autism rate

Jeff Sell — Wed, 12 Sep 2007 09:56:33 EDT

New Jersey initiatives target nation's highest autism rateTOM HESTER Jr. The Associated Press

TRENTON, N.J. - Madeleine Goldfarb thinks about her 13-year-old autistic son and how quickly time flies.

"I can only be reminded of how quickly the past 10 years has gone by, and in eight years he will be considered an adult," Goldfarb said, counting the years since her son was diagnosed with what she described as "high-functioning autism."

The Livingston mother recently told state lawmakers she worries as her son approaches adulthood, knowing those with autism often find themselves lacking help once they turn 21.

"Many of our families are left on waiting lists," Goldfarb said. "Our kids go home and they watch videos day after day after day."

But she's hopeful of seeing progress now that an expert panel will soon begin to study the needs of autistic adults in a state battling America's highest autism rate.

That panel, which is expected to study job training and placement, housing and long-term care, is among the initiatives in a package of bills scheduled to be signed into law Wednesday by Gov. Jon S. Corzine. The bills are designed to improve detection, treatment and awareness.

They will establish a statewide autism registry, train of teachers in autism awareness, require pediatricians to screen for autism symptoms, creating the panel to study the needs of autistic adults, expand funding for autism research and treatment and restructure a state council for autism medical research and treatment.

The Legislature approved the bills earlier this year after the largest U.S. study of childhood autism determined 1 in 152 children have the disorder, including 1 in 94 children in New Jersey.

Autism is a complex disorder usually not diagnosed in children until after age 3. It's characterized by a range of behaviors, including difficulty in expressing needs and an inability to socialize. Its cause is unknown.

"New Jersey has taken a significant step forward in its efforts to solve the puzzle of autism," said Assembly Speaker Joseph Roberts Jr., D-Camden, who sponsored the bills.

Autism forums to be held across the state

Jeff Sell — Wed, 12 Sep 2007 09:51:32 EDT

Autism forums to be held acorss the state

September 11, 2007
The Vermont Department of Education and the Vermont Agency of Human Services has released the schedule for five public forums on autism spectrum disorders to be held across the state over the next two months.

Act 35, an act relating to autism spectrum disorders that was passed by the 2007 Vermont Legislature, requires the Education Department and Human Services agency to gather public input for developing a plan to provide services to individuals with the disorders in their homes, schools and communities. Anybody may attend.

Here is the meeting schedule:

-- Sept. 17, 7 to 9 p.m. - Fourth floor Pavilion Conference Room, 109 State St., Montpelier
-- Sept. 25, 7 to 9 p.m. - Hunt Middle School Auditorium, North Avenue, Burlington
-- Sept. 24, 10 a.m. to noon - Northeastern Vermont Regional Hospital, Conference Room 127, St. Johnsbury
-- Oct. 3, 10 a.m. to noon - Asa Bloomer State Office Building, 88 Merchants Row, Rm. 266
-- Oct. 4, 10 a.m. to noon - Springfield State Office Building, 100 Mineral St., Springfield, first floor conference room

If you are unable to attend but would like to provide written input, send comments to Autism Specialist, Department of Disabilities, Aging and Independent Living, 103 S. Main St., Waterbury, VT 05676. The questions to be posed at the forums will be available online at www.dail.vermont.gov.

Autism Study

Jeff Sell — Tue, 11 Sep 2007 23:08:23 EDT

Social Cues Used By Those With Autism Illuminated

Science Daily — New research suggests that individuals with autism take note of social cues such as eye contact more closely than previously thought, regardless of whether or not they have an additional language impairment.

Many researchers believe that poor social understanding lies at the heart of autistic disorders. Testing this hypothesis has traditionally proved tricky as the methods used are often far removed from real life situations and make extra demands on the subject, such as requiring language comprehension and prolonged memory use. Eye-tracking technology is enabling researchers to investigate social processing in situations that are much closer to those experienced in real life.

Dr Courtenay Norbury, from Royal Holloway, University of London and the University of Oxford said about the research: 'What is potentially most interesting about our work is that it shows what people with autism can do given the right circumstances, rather than what they cannot do.’

A previous study using this technology had suggested that when viewing scenes of people interacting, autistic people spent more time fixating on the mouths of people in the scene while non-autistic peers spent more time looking at their eyes. Because the eyes convey rich social information, it was suggested that this aberrant viewing pattern may be the source of the social impairment that characterises autism.

The team, led by Dr Norbury, wanted to explore whether this pattern was limited to those people with autism but unaffected by language difficulties, in other words, those for whom looking at the mouth might be an advantage. They also thought that the avoidance of the eye area might be linked to the familiarity of the material the subjects were asked to view. Dr Norbury will be talking about her research at the BA Festival of Science at York on Friday.

Using sophisticated eye-tracking devices, the team were able to record the eye movements of autistic teenage boys while they watched video-clips of young people interacting in familiar situations. Half the boys had additional language impairments. Unlike the previous study, where the subjects had been shown clips of the black and white film ‘Who’s afraid of Virginia Woolfe’, these specially made clips were designed so the action would be within the realm of experience of the boys.

Dr Norbury explains: ‘We created regions of interest on each frame of the video and calculated when and for how long each participant fixated on that region of interest. By doing this we were able to determine in real time what aspects of the scene captured a viewer's interest.’

To the surprise of the team, they found no significant increase in the time autistic individuals with language difficulties spent looking at the mouth region compared to those without this additional language problem. In addition, the amount of time both groups with autism spent looking at eyes did not differ from their non-autistic peers.

‘Our work suggests that individuals with autism, like their typically developing peers, can and do attend to important social cues such as the eyes when viewing familiar social scenes. The individuals with autism who had additional language impairments tended to spend less time looking at faces generally, but when they did look at the face, they spent significantly more time looking at eyes than mouths.’

The study also highlighted the variation in the length of time people, both autistic and non-autistic, spend looking at other people’s eyes, suggesting that eye contact is only one of many factors affecting social success.

With autistic spectrum disorders affecting approximately 1% of the school-aged population, studies such as this are vital in shaping educational policy and methods of therapeutic intervention. All the boys involved in this research were in full-time specialist education programmes that include initiatives focusing on social skills. These preliminary findings may suggest that such programmes may raise awareness among autistic individuals of the importance of looking at eyes and improve the understanding of the social information provided by eyes and faces, although this remains to be empirically tested.

Dr Norbury adds: ‘Identifying situations in which people with autism may succeed is an important first step in developing educational and therapeutic interventions.’

‘We have also shown significant variation in ‘typical’ viewing behaviour, raising very interesting questions about social deficit theories of autism and highlighting the complexity of the disorder.’

Dr Courtenay Norbury will give her talk, ‘Social communication and eye movements in children’ as part of the session entitled ‘What eye movements tell us about the brain and language’ on 14 September at Vanbrugh V/045, University of York as part of the BA Festival of Science.

Note: This story has been adapted from a news release issued by British Association for the Advancement of Science.

Children With Autism Don't Adapt As Readily To Unfamiliar Faces

Jeff Sell — Thu, 06 Sep 2007 15:38:30 EDT

Children With Autism Don't Adapt As Readily To Unfamiliar Faces
Science Daily --

When it comes to recognizing faces, children with autism aren't as readily adaptable as are normal kids, according to a new article. That's despite the fact that kids with autism can identify similarities among related faces just as well as other children, the researchers found.

The findings, from a study conducted by researchers at the Universities of Bristol, Florence, and Western Australia, might help to explain some of the core social deficits associated with the disorder.

"The faces we see in the world seem to be unconsciously coded in the brain as points in a 'face-space'," said Elizabeth Pellicano of the University of Bristol. "In the middle of that space is the average, or most typical, face, with more distinctive faces lying toward the periphery. Those more distinctive faces are easier to recognize than ones that are closer to average."

When people with normal abilities see a face, their brains automatically locate this new face in face-space on the basis of its deviations from the average--perhaps the face has bushier eyebrows, for example, or a greater distance between the nose and mouth. "The really neat bit is that the precise characteristics of what constitutes an average face are continuously updated based on our experiences in looking at other people," Pellicano explained.

Evidence of that flexibility stems from a phenomenon known as the "face identity aftereffect," in which looking at a particular face even briefly biases perception toward people who have the "opposite identity," she added. Upon seeing a person with thicker-than-average lips, the observer's idea of the typical face accordingly develops somewhat plumper lips. As a result, thinner-lipped people become more distinctive than they would have been before because their lips now differ more from the "norm." In practice, such shifting of facial perception occurs for all aspects of a face simultaneously, not just any particular feature.

The new study finds that children with autism don't experience the face identity aftereffect to the same degree that normal children do. In the study, kids were first introduced to two faces, those of Dan and Jim, each of whom they were told were "team captains." They were then shown faces that looked like Dan or Jim to varying degrees. Those other faces were created with a computer so that the two faces gradually morphed with the mathematically calculated average face.

The kids with autism were just as able to distinguish between faces belonging to Dan's "team" versus Jim's "team," researchers found. The children were then shown computer-generated faces representing characteristics that were the opposite of those belonging to either Dan or Jim. After seeing opposite faces, typical kids suddenly found it much easier to place Dan-like or Jim-like faces on their rightful team. But the improvement in recognition was much smaller for children with autism.

The findings suggest that autistic children don't update their perceptions in the way typically developing children do. "Since faces are important for interpersonal communication, these adaptive difficulties could help explain some of the social problems that confront people with autism," Pellicano said.

The researchers include Elizabeth Pellicano of the University of Bristol and University of Western Australia; Linda Jeffery and Gillian Rhodes of the University of Western Australia; David Burr of the University of Western Australia and Università Degli Studi di Firenze.

This work was supported by the Australian Research Council and the Experimental Psychology Society, UK.

Reference: Pellicano et al.: "Abnormal Adaptive Face-Coding Mechanisms in Children with Autism Spectrum Disorder." Publishing in Current Biology 17, 1--5, September 4, 2007. DOI 10.1016/j.cub.2007.07.065

Note: This story has been adapted from a news release issued by Cell Press.

It takes a village to raise a child with autism, CP

Jeff Sell — Thu, 06 Sep 2007 15:35:46 EDT

It takes a village to raise a child with autism, CP

Harley was adopted at three days old. He was the first child. Even knowing Harley was about 6 weeks premature, no one anticipated his multitude of issues.

When Harley began to miss developmental milestones, he was diagnosed with hearing loss. At 18 months, just prior to a scheduled operation to correct the hearing problem, doctors found that his hearing had been restored. Further tests were done, which showed that Harley had cerebral palsy and autism, which involves expressive/receptive language delays.

Being autistic, Harley makes repetitive motions like flapping his arms. In addition, Harley experiences petit seizures.

But with his bright red hair and big, blue eyes, he is as cute as a button!

Harley attended the Family YMCA summer program with the assistance of a caregiver provided by Community Alternatives Program funds. He receives therapy through Coastal Riding and attends a United Way aquatic program. In addition, Harley is a client at UCP/Easter Seals.

During the school year, Harley attends the life skills class at Rachel Freeman, where he has occupational and physical therapy services. Kim Johnson, a music therapist, also works with Harley privately.

Harley's situation exemplifies the saying that it "takes a village to raise a child." As any mother would want their child to be accepted as a member of the community, so does Harley's.

Elizabeth DeBiasi offers this advice to families that face raising a special needs child: It is all in the attitude! Turn away from victimhood because it is about the child - not you. Be a positive role model and develop a support system comprised of family, friends and community resources. As parents, you are the child's mouthpiece.

So if you see Harley around town, give him a smile and say hello.

David Morrison is co-chairman of the Wilmington mayor's committee for people with disabilities. The committee welcomes the public to attend its meetings, which are the third Wednesday of every month in the Lord Spencer Room of City Hall from 10:30 a.m. to 12:30 p.m.

David is the Star-News' first community blogger. Check out many more posts at his 'Endless Options for all Disabilities' blog, at disabilities.starnewsonline.com.

48 Patient Group CEOs Call for Health and Long-Term Care Coverage for Every American

Jeff Sell — Thu, 06 Sep 2007 15:22:59 EDT

48 Patient Group CEOs Call for Health and Long-Term Care Coverage for Every American

Statement Calls on Candidates to Propose Specific Policy Solutions

(Nashua, N.H., Sept. 6) -- Today the nation's leading patient groups
released a statement signed by 48 CEOs that calls on the 2008 presidential
candidates to propose specific solutions that guarantee effective and
affordable health and long-term care coverage for all Americans.

This effort represents the first time that the nation's leading patient
groups - charitable organizations that represent people with a chronic
disease or disability - have joined forces in support of improving health
coverage for all Americans.

"We're facing a grave crisis that demands immediate action," said Easter
Seals Chief Executive Officer Jim Williams. "Many are at risk, but none
more so than the 100 million Americans we represent," said Williams, who
also serves as Chair of the National Health Council. "We hope to not only
educate candidates, but compel them to act on this vital issue.

Approximately 500,000 New Hampshire residents suffer from at least one of
the five most common chronic conditions. In addition, nearly 32.5 percent
of residents (approximately 400,000 people), report suffering from a
physical or emotional disability that limits activity or requires the use of
special equipment such as a cane, wheelchair or special bed.

For many of these residents, obtaining effective health and long-term care
coverage is difficult, if not impossible. In addition to those unable to
obtain coverage, many New Hampshire residents are underinsured or have
reached the lifetime cap, effectively ending the care they can receive.

The National Health Council, founded in 1920, is leading the effort to
educate presidential candidates and the media about the importance of
ensuring that all Americans have coverage. It is joined in this effort by
the Alzheimer's Association, Easter Seals and nearly 50 other patient groups
that comprise its membership.

"We can no longer sit on the sidelines and remain quiet when so many of the
people we represent are suffering," Williams said. "This problem has been
brewing for years. Candidates, the media and the public at large must
understand that we cannot wait any longer."

The National Health Council is a nonprofit umbrella organization of 119
national health-related organizations working to bring quality health care
to all people. Its core membership includes some 50 of the nation's leading
voluntary health agencies representing about 100 million people with chronic
diseases and/or disabilities. Other Council members include professional and
membership associations, nonprofits with an interest in health, and major
pharmaceutical and biotechnology companies. The Council serves as a place
for diverse health-related groups to build consensus with a focus on
patients and their needs

###

'Recovering' from autism

Jeff Sell — Thu, 06 Sep 2007 15:16:13 EDT

'Recovering' from autism

The moving documentary "Finding the Words," which tells the story of eight "perfect babies" diagnosed with autism spectrum disorder (ASD) as toddlers, centers on a controversial premise: autistic children can recover.

There is no cure, of course, and each family's fight is an often-frustrating and sorrowful emotional journey. But through home video, photographs, medical reports and interviews with family members and doctors, the film ultimately conveys a message of hope.

And it's one that the film's writer, producer and director, Elizabeth Horn, fervently believes needs to be heard. It was her own daughter Sophia's journey to "recovery" that inspired the work.

But what does "recovery" really mean? Periodically, I'll be posting your own thoughts on the issue, including your stories. They can be as long or short as you like. Here's the first, written by Oak Park's Christina Blakey.

To submit your own story, drop me a note at jdeardorff@tribune.com.

"I am a stay-at-home mother to three boys (Daniel, Charlie and Joe) and my husband is a Federal Prosecutor in Chicago. Our eldest son had life-threatening asthma at age 2 and our middle son has autism.

I run a state-wide support group called "Illinois Biomedical Kids" where parents draw support and guidance from one another as they successfully treat their children with autism.

In August of 2005, there were 20 of us. Now, two years later, we are almost 200 parents strong.

My husband and I are very thankful we decided to look into the science ourselves and not simply take the "experts" word for it. Through the medical treatments aimed at detoxifying their bodies of heavy metals and regulating their immune systems, my boys are doing extremely well today.

My eldest no longer has asthma and my son with autism is mainstreamed in a 2nd grade classroom. Fortunately, he received intensive therapy through Early Intervention from age 10 months and once we began treating his underlying medical problems, he has flourished in home Applied Behvior Analysis (ABA) programs. He is a well-liked member of his class with many friends. My youngest, under-vaccinated boy, has neither autism nor asthma.

I know the word "recovery" strikes a resonant chord in many individuals within the autism community. We aren't trying to change who our children are-we are simply not ignoring the very real medical problems they have.

For instance, all the mainstream doctors I approached (including the very talented allergy/immunology team at Children's Memorial Hospital) assured me that my son didn't have any problems with milk and could not explain why he threw up almost everything he ate and had severe gastric reflux as a 6-week-old infant. However, when I finally bit the bullet and took milk products out of his diet, he stopped throwing up.

I remember when he was 3 years old, he used to have to sleep next to a bed pan every night. By simply replacing milk and wheat products with healthier, easier to digest alternatives, he not only became healthier but his language and cognitive skills improved dramatically.

I know this because his diet was the only thing we changed within a six-month period of time and we had his language tested right when we started the diet and then six months into the diet. His expressive language scores jumped 10 months with absolutely no speech therapy and a very difficult family move during this period of time.

The same improvement was seen by all who worked with him when we began chelation (using chemicals to remove excess or toxic metals) as well as hyperbaric oxygen therapy. Transition tantrums ceased and his congitive skills soared.

Is Charlie cured now? I don't consider him to be, but I really believe it depends on who you ask. Many people would never guess he was ever as severe as he was and he has playdates with all neurotypical peers who don't see him as anything but another playmate.

Once we paid attention to his medical issues, educational and therapuetic issues fell into place and the difficult social skills and language taught through many hours of therapy were finally 'sticking." It no longer feels as if we are pushing a boulder up a steep hill.

I also know a lot of parents with "recovered" children who choose not to talk about it. Perhaps many of us resist using the word "recovered" because it implies that the journey is over.

For those of us who have entered the realm of biomedical treatments for our children, it has become impossible to go back and pretend that we don't know better when we make parenting choices based on convenience rather than health. To pay close attention to the diets of our affected children and ignore the processed food we feed our "neurotypical" children. To ignore our own health.

I'm truly thankful that my son is at the point when I can take a little bit of time for myself now and then, yet this is unfortunately not the case for so many parents whose job is to ensure the very safety of their child, 24 hours a day, 7 days a week. My son may not have lost his autism diagnosis yet.

However, when I consider the fact that just a few years ago, he could not hold down the food he ate, he stimmed alone for hours on end, he could not carry on a simple conversation, and he tantrumed to the point of kicking my then-pregnant belly repeatedly when transitioning from one activity to the next, I marvel at the endless possibilities within his little 8-year-old body and can't help but hope for his future. For all of our children's futures.

A painful choice to save a family

Jeff Sell — Wed, 05 Sep 2007 11:18:06 EDT

A painful choice to save a family

John Faherty
The Arizona Republic
Sept. 2, 2007 12:00 AM

http://www.azcentral.com/arizonarepublic/news/articles/0902ThatBoy-redo.html

When police officers finished binding her son Colin's hands and feet, they
turned to Teresa Abernethy and asked what she wanted them to do with him.

It felt like every moment of the past decade led to this question.

Colin, then 12 years old, had severe autism. His disability had grown to
shape the Abernethy family. Teresa knew that her answer to the officer's
question would define it forever.

She thought first of Colin.

She thought of her other children. They already had seen and experienced too
much.

She thought of her husband, Jim, who once told her that if they placed Colin
outside the home, he would never be able to see his son again. He would be
too ashamed.

Teresa knew the answer but was surprised to hear herself say it: Take my
son.

It was at that moment two years ago that the Abernethys began the process of
breaking their family apart in order to save it.

. . .

By the time Colin was a very young boy, Teresa Abernethy knew he was not
like other kids.

"I would take him to the park, and he would just run," she said. "He would
never look back. Most kids turn back to look for their mom and dad when they
get to a natural boundary. He never looked back, never."

Colin was diagnosed at 18 months.

Autism is a neurological disorder with a wide spectrum of behaviors. There
is no cure.

Colin didn't speak. He didn't connect with anybody. He seldom looked at his
parents.

The Abernethys treated his illness aggressively. They worked with doctors,
psychiatrists and therapists to get him the best care.

They worked with his teachers in special education in the Madison School
District.

Teresa quit her job as a nurse to take care of Colin and the other children.

But Colin continued to struggle at home.

Like many children with autism, Colin finds comfort in routine. In a large
family, that is in short supply.

"The lack of consistency was too much for Colin," Teresa Abernethy said.
"Family is hectic. School is going to call. Soccer practice gets changed. A
kid gets sick. There is always something. And it was all too much for
Colin."

The Abernethys were realizing that the thing they loved the most, their
family, was a big reason why Colin was becoming unmanageable.

As he grew older, Colin's outbursts were becoming more common and more
violent.

And they were usually directed at his mother.

"He was such an imposing figure," Teresa, 42, said.

When Colin was at school, there was respite for Teresa, but it was
temporary.

"The bus delivered him to the front door every day. He would come home, and
I would be petrified."

Some days he would run into the home, drop his book bag and start hitting
her.

"Living with Colin was like living with an abusive spouse," Teresa said.
"You never knew what was going to set him off."

Colin's doctor, Dr. Kevin Berger, told her it was common for someone like
Colin to lash out at the person he is most comfortable with.

Teresa wore long-sleeved shirts to hide her bruises and bite marks, but she
knew Colin's behavior was beginning to damage her entire family, something
she and her husband had vowed would never happen.

"You try to protect your kids from things, but the violence they have seen
is not something any child should ever see," Teresa said. "He was our
burden; he was not our kid's burden."

. . .

Connor Abernethy, then 9, shared a room with his brother Colin. Getting
Colin down for the night was never easy.

"We would close his door and just pray that it remained closed," Jim said.

One night, after a particularly difficult day, the boys were in their room
and, finally, asleep.

The parents were sitting and listening to the sudden silence of a house full
of sleeping children.

Then Connor emerged from his room and told his parents he had a headache.

"You've got to keep in mind that Connor is a kid who never complains about
anything, and all I could think to do was get him back into that room," Jim
said.

They rushed to the medicine cabinet, gave Connor aspirin, and all but pushed
their child back into his room.

When the door shut, Jim realized that he had lost control of his family.

"I stood there and I said, 'This has got to end.' "

Jim Abernethy, 41, comes from a family of six kids in Queens, N.Y., and he
places great value in keeping the family intact.

The Abernethys tiptoed around the issue of placing Colin sometimes and
argued about it other times.

Jim could no longer deny Colin's presence in the home was harming their
other children.

"His violence was extraordinary," Jim said. "He was uncontrollable at the
end, and it was all going on in the house in front of the kids. He was
assaulting my wife."

There were at least six calls to 911 from the Abernethy home in the two
years before Colin left.

More people, including Colin's doctor and psychiatrist, advised the
Abernethys to consider removing Colin from the home.

Jim remained reluctant to place his own son, who cannot communicate, into a
group home.

"My primary concern is that he would not be able to tell me if he was abused
in any way."

. . .

The night Teresa told police that Colin could no longer stay in their home,
he was handcuffed to a gurney and taken by ambulance to St. Luke's
Behavioral Health Center in Phoenix.

As he was admitted, Colin began to realize what was happening.

"It lasted about 35 minutes. Banging his head. Ripping off his clothes with
his mouth," Teresa said.

During his four weeks there, a spot was found for him in a group home about
5 miles west of the Abernethy home.

While Colin was in the hospital, his family moved his furniture and clothes.

When they walked into the house, Teresa said to her son, "Colin, this is
your new home."

He had no reaction.

The state's Division of Developmental Disabilities tries to keep families
together because it is usually best for the child. Placing a child at a
treatment facility is also costly for the state. Of the 16,680 children with
developmental disabilities the division is now serving, only 94 live in
group homes.

Teresa was told repeatedly by the division to try to keep Colin at home.

But she knew, and Colin's doctors knew, that he was becoming worse, not
better.

His stay at St. Luke's changed things.

The state reviewed his case and decided to place him in a home with just one
other teen.

The house is handsome and clean and staffed by at least two people 24 hours
a day.

There is art on the walls and notes on the refrigerator, but it still feels
more like the waiting room for a large dental office than a home.

Colin has made significant progress during his time there.

His psychiatrist has adjusted his medications, which has helped. Of equal
importance is that Colin now lives in a completely controlled environment.

He wakes up at the same time every day. He is taken to school, and then he
sits down for dinner each night at exactly 6:30. After dinner, he spends 20
minutes on a swing set.

He has not physically attacked anyone since his move.

As Colin's anxiety decreased, the Abernethys were able to start seeing him
more.

"We did not put him in the group home to not be part of the family," Teresa
said.

Nearly every day Colin goes to the Abernethy home to spend time with his
family.

Teresa is certain she spends more time with her 14-year-old son than anyone
else she knows.

"It's great being able to just be his mom," she said.

Although Colin has progressed, he remains highly uncomfortable around
people. He still spends hours every day shuffling a deck of animal flash
cards in a manner that seems to calm him. He remains non-communicative.

Colin works with counselors on self-calming methods. He is learning basic
living skills such as how to clean and the value of money.

But he will never be well.

On his wall is a dry-erase board where Teresa writes her son notes:

Colin,

Your mom will be here to visit you tomorrow at the house around 8:45 a.m.!

Then you will go to OT around 2:30 p.m.

Colin will go to Mommy's house Wednesday.

. . .

One day last school year, Erin, then a seventh-grader at Madison Meadows
Middle School, sat down and wrote a poem about her brother.

She called it "That Boy," and it described what she and her family were
going through.

Teresa read the poem after learning it won a districtwide contest. "You
think you're protecting your children from some things," she said, "but of
course they know everything, see everything."

When Colin is home with his brother and sisters, he is a brooding presence
and remains the point around which everything revolves.

His siblings love him and ignore him like only family can.

They sit on the couch and talk to him and about him while he shuffles his
cards.

Maggie, 3, is just now realizing that Colin answers all of her questions
with a quick grunt that sounds like a yes.

It's a defense mechanism he uses for all questions, an attempt to end a
conversation as quickly as possible. It is beginning to infuriate her.

Erin, 13, clearly adores her brother and knows he would never hurt them, but
she also knows Colin hurt their mother.

Connor, 11, cuts his hair very short just like Colin's.

"Most of the memories I have of Colin are sad ones because it was hard,"
Connor said. "He would have tantrums, and he makes a lot of noises."

He pointed out that it was also nice to share a room with his big brother.

"I used to be afraid of the dark. I'm not anymore. But it was nice to have
someone in the room with me."

Colin has always been close to his maternal grandfather, Jim Gross of Sierra
Vista.

Recently, Gross came up for a visit and found Colin sitting on the family
couch, shuffling his cards.

Gross, 68, leaned over and kissed his grandson. Then the two of them held
their foreheads together.

Colin did not smile, but for a moment it looked like he recognized the world
around him.

Then in his rapid monotone he said, "Jeopardy, Jeopardy, Jeopardy," his
favorite show.

At once his brother and sister told him the show will begin at 4:30, and he
was quiet again.

Despite the progress Colin has made, moving him home is not an option.

The Abernethys have to think of all of their children and are certain Colin
would revert to his more troubled ways.

"Would I be keeping my child at home for him or for me?" Teresa said.

The Abernethy house is a place where everything works but nothing is
perfect. There is very little art. The furniture does not match. The walls
could use a fresh coat of paint.

It is also the home of three children still trying to navigate their family
minus Colin.

Their brother continues to define who they are, but now it is his absence
that forms them.

"At first it felt kind of empty," Erin said, "like he was not here. Weird."

"But now it feels right. Perfect. Sad but perfect."

Environmental Exposures and Gene Regulation in Disease Etiology

Jeff Sell — Wed, 05 Sep 2007 11:12:57 EDT

Environmental Exposures and Gene Regulation in Disease Etiology

Thea M. Edwards and John Peterson Myers
Environ Health Perspect 115:1264-1270 (2007) .

Abstract

Objective: Health or disease is shaped for all individuals by interactions
between their genes and environment. Exactly how the environment changes
gene expression and how this can lead to disease are being explored in a
fruitful new approach to environmental health research, representative
studies of which are reviewed here.

Data sources: We searched Web of Science and references of relevant
publications to understand the diversity of gene regulatory mechanisms
affected by environmental exposures with disease implications.

Data synthesis: Pharmaceuticals, pesticides, air pollutants, industrial
chemicals, heavy metals, hormones, nutrition, and behavior can change gene
expression through a broad array of gene regulatory mechanisms. Mechanisms
include regulation of gene translocation, histone modifications, DNA
methylation, DNA repair, transcription, RNA stability, alternative RNA
splicing, protein degradation, gene copy number, and transposon
activation. Furthermore, chemically induced changes in gene regulation are
associated with serious and complex human diseases, including cancer,
diabetes and obesity, infertility, respiratory diseases, allergies, and
neurodegenerative disorders such as Parkinson and Alzheimer diseases. One
of the best-studied areas of gene regulation is epigenetics, especially
DNA methylation. Our examples of environmentally induced changes in DNA
methylation are presented in the context of early development, when
methylation patterns are initially laid down. This approach highlights the
potential role for altered DNA methylation in fetal origins of adult
disease and inheritance of acquired genetic change.

Conclusions: The reviewed studies indicate that genetic predisposition for
disease is best predicted in the context of environmental exposures.
Second, the genetic mechanisms investigated in these studies offer new
avenues for risk assessment research. Finally, we are likely to witness
dramatic improvements in human health, and reductions in medical costs, if
environmental pollution is decreased.

- - - -

Address correspondence to T. Edwards, 521A Bartram Hall, PO Box
118525, Department of Zoology, University of Florida, Gainesville, FL
32611 USA. Telephone: (352) 392-1098. Fax: (352) 392-3704. E-mail:
tedwards@zoo.ufl.edu

We thank W. Hessler for her editorial suggestions.

The John Merck Fund provided funding for this review.

The authors declare they have no competing financial interests.

Received 2 December 2006 ; accepted 21 May 2007.

authors:

Thea M. Edwards1,2 and John Peterson Myers2

1Department of Zoology, University of Florida, Gainesville, Florida, USA;
2Environmental Health Sciences, Charlottesville, Virginia, USA

Panel explores autism in MO

Jeff Sell — Wed, 05 Sep 2007 10:58:34 EDT

ST. LOUIS (AP) -- A state panel heard testimony Friday in St. Louis on
autism and ways to improve services in Missouri.

Speakers talked about the hope to better cross-reference research data. They
talked about ways to provide earlier diagnosis and better services for those
with autism.

They stressed issues like education and training that can help certain
autistic people be more self-sufficient or hold jobs.

Autism disorders are marked by a wide range of behaviors. Some autistic
people insist on sameness or have difficulty communicating or socializing.

The panel's findings could help legislators craft new laws related to
autism.

(Copyright 2007 by The Associated Press. All Rights Reserved.)

The Boys of Summer

Jeff Sell — Tue, 04 Sep 2007 18:01:49 EDT

The Boys of SummerBy Jeff Sell

Ben and Joe Sell were born on Tuesday morning, May 17th 1994. It was one of the happiest days of my life. I had always dreamed of having a son, but on that day my wife, Paula, and I were blessed with not just one, but 2 precious, sons. Our family had nearly doubled in size. We already had a 16-month-old daughter, Natalie, and Paula and I welcomed our second daughter, Gracie, on September 17, 1997. Our home was, and still is, a busy, eventful place to be, to say the least.

The day the boys were born, I stopped by a sporting goods store and bought two small baseball gloves for my new little shortstop and second baseman. Perhaps my behavior was a bit premature, but I had already planned out their future. They would play for the Yankees and turn a double play in under 2.4 seconds.

Little did we know how significantly our lives would change just 2 ½ years later when the boys were diagnosed with autism.

Diagnosis

At the time of the boys’ birth, Paula was teaching elementary school and had received her certification in special education. Shortly before their birth, though, she retired to be a stay-at-home mom.

The first year was a blur of diapers, bottles, giggles, and more diapers. Then when Ben was around 9 months old, Paula noticed him acting differently and that he had stopped responding to her voice. Over the next year, we came to realize the severity of Ben’s problems and he was diagnosed with autism.

Ben is a “profoundly” autistic young boy we are told and possesses some of the classic characteristics that accompany autism: to date, he has never spoken a word; we have experienced gut-wrenching moments of him displaying self-injurious behaviors; and at age 13, we are still trying to toilet train him. However, I have no doubt that he is smarter than me!

Throughout this entire timeframe, Joe continued to develop at a normal pace and was meeting all of the expected milestones. Then around the age of 24 months he, too, began slipping away, right before our very eyes.

Today, Joe is able to speak but has significant language deficits and is considered to be on the “higher end” of the autism spectrum.

Coping

Paula and I handled the autism diagnoses differently. I could not understand what had happened to my twin boys. Why was this happening to my family? How could I “fix” my sons? Typical Dad thoughts I suppose. Would they ever play baseball or be able to engage in some of the “normal” activities young boys enjoy?

While I was searching for answers to these endless questions, Paula was much more accepting of the diagnosis. She pushed ahead and dealt with the news head-on. I, on the other hand, continued to feel sorry for myself and for what I perceived to be the loss of so many dreams that I had concocted for my sons.

I soon learned, however, to focus on the positive, rather than the negative. Sure there are plenty of stressful times involved with raising four children, two of whom have autism, but the glass is always half-full, not half-empty.

A Mother’s Care

Paula’s job is certainly the toughest job by far. She is a teacher, cook, scheduler, chauffer, nurse, doctor and an advocate and exceeds in each role. She is also actively involved in the boys’ individualized school programs, working closely with their teachers. There is never a dull moment in her day and, when the day is reaching an end, she eventually makes it to the sofa for a much-deserved rest.

As a couple, we individually try to do the things we have a talent for doing when caring for the boys. Their needs vary, however, because they are on opposite ends of the spectrum. Because their needs are so different, Paula and I share a unique insight into the issues that often divide our autism community (i.e. the most effective interventions).

Joe is higher functioning than Ben so we notice that what may work for one, may not work for the other, be it a biomedical treatment or behavioral intervention. Their school programs are very different as well. So with confidence, we can say that we have seen firsthand the array of issues that families of children with autistic spectrum disorders face.

A Father’s Voice

I am on a never-ending quest to find solutions to some of the global problems facing our autism community and will speak out on nearly every important issue. It’s what I do for a living--talk. I am after all, nothing but a trial lawyer.

The boys were the reason I became involved with the ASA where I served on the board for nearly 5 years, was elected as the 1st Vice President for the Society and was also the Government Relations Committee Chairman. Now, I am a “staffer” for ASA and am one of the lucky ones that can say--“I love my job”. Also, in 2001 I co-founded the Vaccine Injury Alliance whose lawyers are trying the Autism Omnibus case in the US Court of Claims as I type.

My wife and I are indeed blessed. Our oldest daughter Natalie is a healthy 14 year-old, Ben and Joe are now 13 and Gracie is a 9-year-old fireball. Raising 4 children is challenging, but we cannot think of a greater joy than the love we see flowing though the roots of our family. Also, we have been gifted with friendships from so many talented and dedicated giants in the autism world.

The boys continue to add to the dynamics of our family and make it “extra-special” with their unique personalities and needs. They impact our individual character and remind us to appreciate family and friends most of all, rather than money or material possessions.

They may not be headed for the Big Leagues as I had once planned while playing college level ball at Kent State University, but the joy I experience from coaching Ben and Joe’s “Special” Little League team far exceeds anything that I could have ever imagined.

I am one lucky Dad…

The Task at Hand

Andrew — Thu, 09 Aug 2007 03:49:50 EDT

The following entry has been taken out of my myspace bulletin.

It bothers me how much we all have been jumping off the boat of Real Issues into the Ocean of what I like to call "Distraction". Even I myself has done it, but at least I am learning from it. The big boys (as in the U.S. government and the big shot organizations located in the U.S.) and company apparently aren't.

If you aren't sure what exactly I am talking about, what I am saying is that the country and the people in it aren't exactly sure what we are exactly post to do. We were once focusing on the war in Afghanistan, but Bush moved on to the war in Iraq and most of us forgot about Afghanistan once the war in Iraq began. And we already got rid of Sadam and some of his colleagues, and there are no weapons of mass destruction, so why are we still in there and not focusing on getting rid of Al-Queda's main man, Osama Bin Laden?

Family, Community and Autism

Cheryl — Sun, 11 Feb 2007 14:16:43 EST

With all of the important issues facing Americans today and for the next decade or so, it is easy to lose sight of some of the quiet giant ones. Autism is now believed to afflict 1 in 150 children, a staggering number that will effect everyone. This issue is important to me because I have a son with the condition. Jason will turn 13 years old in April and was diagnosed at age two with "Severe Autism." He will always need assistance in basic living needs and therefore will always be under someone's care until his passing. While our family is committed to take on that responsibility, what of families that cannot?

In our discussion about the future financial health and welfare of our citizens and our country, Autism is something that MUST be included. When 1 in 150 children with Autism become adult and then elderly, what plan is in place to care for them? This is not a condition that has been linked to any parental cause, it is thought to be environmental. That makes it everyone's responsibility. We cannot turn our back on the issue while arguing what caused it or who to place the responsibility on. There is the simple reality that 3 million or more adults will need daily care and financial support through the remainder of this century.

When we talk about quality of life for family and community, let's not forget those who live with conditions that are life long challenges and whose conditions effect all Americans.