• Sat, Nov 24 2007

The Candidates’ Autism Plans

Democrat Hillary Rodham Clinton announced her autism plan in Sioux City. She called for for $700 million in funding for autism research and education and criticized President Bush for failing to fully fund legislation such as the Combating Autism Act (CAA); Clinton noted that she co-sponsored the CAA and also, earlier this year, the Expanding the Promise for Individuals with Autism Act. Referring to autism as a “national health crisis” (as quoted in the Associated Press), Clinton said that “‘we don’t know how to cure it, and we don’t even know the best ways to treat it.’”Autism initiatives that Clinton proposed taking include:

  • Expanding research to identify causes of autism by doubling investments in the National Institutes of Health’s (NIH) efforts to identify the causes of autism, and monitoring its impact across the country
  • Creating an Autism Task Force charged with investigating evidence-based treatments, interventions, and services
  • Providing planning and demonstration grants for services for adults: Clinton will provide funding for for a one-time, single year planning grant for states and a multi-year service provision demonstration grant program to increase access to appropriate services to adults living with autism, including job training, housing, and transition services for young people leaving school. 
  • Improving access to post-diagnosis care, so that children can start receiving services as soon as possible after they are diagnosed.
  • Providing teacher training: Clinton will provide funding for school districts to ensure that teachers responsible for educating children with autism receive specialized teacher training, including ways to engage in appropriate interventions
  • Creating a National Technical Assistance Center that will gather and disseminate information about autism treatments, interventions, and services, and provide technical assistance; this information would be accessible through the Internet.
  • Guaranteeing quality, affordable health care: Clinton’s American Health Choices Plan would enable individuals with autism and other developmental disabilities to have access to quality, affordable health care for their conditions.
  • Citing the costs of insurance and insurance premiums, Clinton pointed out that her universal health care plan would enable families to afford health care as good as that currently received by members of Congress.  Her initiatives do directly address some of my own main concerns regarding autism, namely: Education and teacher trainings; services for adults who need them; insurance coverage. I’m not sure who I will cast my vote for in the 2008 Presidential Election. Here are Senator Edwards’ and Senator Obama’s autism plans. Prouddem316, who has an autistic son, posts about John Edwards’ Autism Plan:

    “Autism is a quiet crisis, affecting an astonishing 1 in 150 children and four times as many boys as girls. Nobody knows why diagnoses have risen tenfold just over the past decade. We need to find the causes so we can help protect our children. The National Institutes of Health have concluded that childhood vaccines are not the cause, but many families are not convinced.As president, I will double funding for autism research, issue an all-hands-on deck challenge and follow the results wherever the science takes us.We also need to take better care of children affected today. My plan for universal health care, guaranteed coverage of autism care in Medicaid and private insurance, and better investments in special education and home health workers will assist families to support and treat children with autism and help children, and adults, reach their full potential.We should also invest more in recruiting, training and paying sufficiently teachers, therapists, psychologists and others working in the special education field. It’s time to finally get on a path to fully funding special education.This is an area I’ve been involved with for a long time. I started fighting to help families with autism when I first arrived in the Senate. One of the very first bills I introduced and help make law was the Fragile X Breakthrough Research Act, which provided new resources for a genetic condition that results in autism for thousands of children. We passed the bill into law, providing new resources for research devoted to Fragile X.”John Edwards  

     From Barack Obama on Creating a Healthcare System That Works:

    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.  

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    • http://www.rettdevil.org Kassiane

      Wow.

      Looks like Obama listened in the summer of 2004 when a pigtailed dripping wet kid who’d been in an outdoor fountain (designed for the purpose) nearly tackled him at an Event to talk about autism, just before voting in her first big election.

      Glad that girl kept up her voter registration, too.

    • http://www.autismvox.com Kristina Chew, PhD

      Only nearly tackled?….. Did he make any reference to autism them?

    • http://www.rettdevil.org Kassiane

      Only nearly tackled. I DO have *some* restraint.

      Before then he said he hadn’t heard anything about autistic adults except the inaccurate bits in college & in the awareness campaigns. And in 2004 Obama said he would respect all diversity, that the idea that differences in brain wiring are valid ways of being made sense…just he hadn’t thought of it before.

      Looks like he meant it. I’m so delighted. Seriously, I was flapping when I read it, waiting to get to the E word or the C word or something like that.

      I wonder if any other candidates just “haven’t thought of that before” and are educable? I’m sure people ARE if someone talks to them, but they aren’t USED to seeing the world through the eyes of another…(empathy deficit?)

    • Leila

      Wow, I had no idea the candidates programs were so specific as to include autism as part of their platform. In any case, I’m voting for Edwards because of his strong emphasis on universal health care and other issues that are important to the majority of the people (the lower and middle classes).

    • http://enemiesofthelibrary.blogspot.com Justthisguy

      Anybody have any idea about the positions of Fred Thompson and Ron Paul on this issue. A half hour of googling on Thompson and autism got me nothing. I have not tried it with Paul yet. The ones mentioned in Kristina’s post are, of course, completely unfit for the office on Second Amendment grounds.

    • Rjaye

      Justthisguy–

      Autistic people are screwed as far as Ron Paul is concerned. Ron Paul is for the states handling such issues, and as it is, funding is limited. Care for severely autistic individuals is expensive, and the private sector is extremely unwilling to have anything to do with the education and care of severely disabled people except in providing warehousing of such individuals. Relying on tax cuts and the private sector has proven a not very effective way to take care of our neediest citizens. The will just isn’t there, and Paul doesn’t believe the feds should have anything to do with it.

      It always cracks me up when people say communities and business can take care of their own better than the government. One, people will try to get out of paying for stuff if they can, and two-businesses are not in business to provide social services.

      It’s the devil to pay one way or another.

    • http://ladylimoncello.multiply.com/ Florence

      I’m all for teacher training here. I homeschool because of he lack of it. I think the CAA is a step in the right direction as long as services are included.

    • Maguro

      I guess you know the anti-vaccine conspiracy theorists have really become mainstream when presidential candidates start pandering to them. Edwards’s promise to double research and “follow the results wherever the science takes us” is designed to cast doubt on the existing studies without explicitly challenging the NIH. Maybe John will let us know exactly how “science” wasn’t “followed” in the previous studies. I’d really like to know his expert opinion!

    • http://www.rettdevil.org Kassiane

      Florence,

      Have you asked autistic adults what they think about being combatted?

      -outlaw in my homeland.

    • http://ladylimoncello.multiply.com/ Florence

      Outlaw,

      I for one have been battling the establishment (district/medical community) to have my children accepted just as they are. My son has great self-esteem. My son will be an adult soon and hopefully will have all he needs to advocate for himself. While I don’t agree on a “cure” I do agree for services and other help. Perhaps you would like to offer your insight to those who are passing this law. There is no black and white here. Direct your energy to the Wrights who think their “children are in the darkness”. Not to parents who fight everyday to have their children accepted. Thanks.

      The Apache Helicopter Mom

    • http://www.autismvox.com Kristina Chew, PhD

      Teacher training is crucial, and also continued support for teachers — we’ve had some really good teachers who, due to lack of support from the districts, found themselves in difficult situations in the classroom and did not have anyone who might help them. I wish that the CAA could have a different name—-I’m not one for the militaristic tone—-comments and conversations here with autistic adults and autism parents have definitely helped me get a better sense of how best to help my son.

    • http://compostermom.blogspot.com Daisy

      I did like the mention of teacher training. I am considered an “expert” by my co-workers, but my knowledge comes from life experience, not formal training.

    • Melanie

      Wow, Hillary really came out with a fleshed out plan here, and she’s elevating the issues around autism.

    • KimJ

      Florence,
      Those of us familiar with the CAA know that parent activists (Autism Speaks) actually lobbied to get particular language about services for adults taken out. CAA failed to get passed because it went too far with the “blame the environment” angle (Barton).
      CAA was not an autistic-friendly piece of work. Don’t be surprised if people resent those who supported it. It’s very insulting and for most of parents with maturing children, not helpful.

    • http://autisticbfh.blogspot.com abfh

      Melanie — although Hillary’s plan may look impressive at first glance, her main emphasis is on “prevention,” that is, genetic research to develop a prenatal test for abortion purposes.

      Take a look at this video:

      http://www.youtube.com/watch?v=1avUuFQcMP8

      (the clips of Hillary were taken from a speech she made in March 2007)

    • http://www.autismvox.com Kristina Chew, PhD

      I’m going to be interviewed on XM radio tomorrow at 12.30 pm, EST. Any thoughts you want to send my way before than are much appreciated.

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    • http://www.rettdevil.org Kassiane

      Florence,

      I talked to congresscritters in three states (Illinois, Idaho, and Montana, and intend to in Washington as well) as to EXACTLY why the CAA is the most offensive piece of legislation since the laws that wouldnt let racial minorities vote.

      Many don’t give a flying fart. The Wrights don’t listen to me, they have 1,001 reasons Im not like their kids (most being “born in 1982″). They fought to have adults and everything but CURE excluded from autism legislation.

      No autistics allowed, just like in Canada. I do my homework. I did the talking, which is a lot harder for me than it would be for you (including literally tackling Barak Obama when I was 21). They didn’t listen. They have it firmly in their head that only PARENTS matter.

      And most parents want them to KEEP believing that.

    • http://www.autismvox.com Kristina Chew, PhD

      Florence — Will your son be finishing school soon and starting to work? (Hope it is all right to ask; in thinking of my own son’s future, it helps to know what paths others have taken.)

      My main hope is to keep the focus of autism legislation on helping autistic persons in the here and now……

    • Regan

      Kristina said:
      “…My main hope is to keep the focus of autism legislation on helping autistic persons in the here and now……”
      GOOD goal.

      I need to take a closer look at the overall track record of the candidates before I have an informed opinion on who to vote for.

      The CAA passed 12/19/06 [see S. 843/ .PL 109-416] What didn’t pass was funding…and to my understanding is tangled with the current budget debate.
      Just because I was tracking both bills–Hillary was the sponsor of S.1283 / PL 109-442; /The Lifespan Respite Act of 2005, passed 12/21/06, to increase training of and coordination of , and access to, respite providers.
      In case anyone wants to track it, the new bill is S.937/Expanding the Promise for Individuals With Autism Act of 2007. The title was noted but I like to go to the Feds tracking system for text and Congressional action, and having the bill number makes it somewhat easier).
      (All autism and disability legislation can be located and tracked via Thomas.gov, http://thomas.loc.gov/
      using keywords, such as…”autism”)

    • http://http:/achildchosen.com pickel

      Hilary’s platform is technical and focused on prevention and genetics. I doubt there comes any “real” support down the pipeline. She also mentions that she believes in “evidence based treatment” so I doubt there will be any support for DANs out there.

    • http://jamesbradfordpate.blogspot.com James Pate

      Ron Paul actually got a B-plus from Autism Facts, the highest grade among all the Presidential candidates.

    • http://jamesbradfordpate.blogspot.com James Pate

      Ron Paul got the highest grade of all Presidential candidates on Autism Facts.

    • http://www.autismvox.com Kristina Chew, PhD

      I think this is in part because of his view of “health care freedom”—–so that families could be “free” in their decision to vaccinate a child or not?

    • http://www.zone38.net/ codeman38

      Personally, I’m curious about Kucinich’s stance on autism (yeah, I know, I know, he’s a long-shot candidate, but I agree with so many elements of his platform). I couldn’t find more than a small blurb on his congressional issues page, which is, to be honest, quite vague about it.

    • http://jamesbradfordpate.blogspot.com James Pate

      I think that’s a big part of it, Dr. Chew, but the site also said that Paul has supported funding research into autism. Unfortunately, it didn’t give specifics. That sounds somewhat uncharacteristic of him, since he ordinarily doesn’t like the government to fund anything.

    • http://www.autismvox.com Kristina Chew, PhD

      The Autism Facts site has a lot of “information” about the theory that mercury causes autism—-this is a theory, and there is no credible scientific research to support it. “Research into autism” is a very broad term, indeed, and can tend to be research into the causes of autism, rather than research to advance understanding about education and schools.

    • http://ladylimoncello.multiply.com/ Florence

      Kristina,

      My son graduates this year. He has been accepted to an AS friendly college where he wants to major in Physics/Aerospace. We picked a smaller but good college relatively close to home. He will be taking a math course he needs this year at the community college to “catch up” in order to take advantage of the program he was accepted to. This is long way from the days he wouldn’t come out from under his desk. I’m so proud of him.

    • http://www.autismvox.com Kristina Chew, PhD

      Fabulous! Really pulling for him—-I hope he does not feel that he has to hurry at all to “catch up” and that he can take the time he needs. I try to emphasize this to my students.

    • http://www.autismvox.com Kristina Chew, PhD

      Clinton is citing “spending time with a child with autism” (otherwise unspecified).

    • http://ladylimoncello.multiply.com/ Florence

      Kassiane,

      I guess they listen to whoever is funding their campaign. I haven’t received any straight answers regarding services either. Oprah won’t touch the subject either.

    • http://crimsonthoughts.spaces.live.com/ Cliff

      Of course, I doubted that a position based on helping autistics and their families would be advocated by a presidential candidate over a “cure” or “prevention” standpoint, since those positions have more money, financial support, and thus are probably what politicians are introduced to.

      Edwards and Clinton are both what I expected. Obama, however, seems actually to have a far more balanced position, and seems more open to an educational/assistance point of view. That’s a good thing from my view, though he probably had my vote anyway.

      Of course, anyone advocating for states over federal government would probably do a good job quashing autism services. Working at that level minimally, it was obvious enough that without federal support the state was going to have far more reservations about autism funding. Of course, they still did, but the promise of matching funds did help a lot (which, of interest, came from a bill sponsored by Clinton).

      Cliff

    • http://ladylimoncello.multiply.com/ Florence

      Kristina:

      He is catching up now because they were dumbing down his classes before. I try to tell them, he’s autistic not stupid. They finally are listening.

    • http://parents.com/autismville Autismville

      Just to clarify, even though it’s already been said, the CAA is a research-focused bill. It was signed into law in 2006, but appropriations are still up in the air.

      The EPIAA is a bill that currently focuses on lifetime services for those on the autism spectrum. It is not a research bill … it is a services bill. It was just introduced last Spring, so it is still very early in the process…

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    • http://www.thomaspages.org/bloggg Moi ;)

      Gang, Hillary is no longer for “universal” health care. She is in the drug companies’ pocket – a corporate puppet – which means that whether or not you are in the vaccine camp, she is not on your side.

      Hillary will pander to the drug companies – which means that you won’t see anything remotely resembling REAL help for autistics. Do you see anything on that list for adults? What good is a grant going to do? Nothing. Autistic adults can just go AFFORD health care, see?

      Yeah, and monkeys might fly out my butt.

    • KimJ

      Well, I imagine she can be both for universal health insurance and remain in the drug companies’ pocket. It’s called “tax and spend”.

    • amparker

      It is very clear to me that the only candidate who came out publicly with a specific plan about combatting autism was and has been Hillary Clinton. The two other Democrats are VAGUE at best – no committment, no Autism Task Force. This campaign promise is something we can hang our hats on- such a s Global Warming Czar etc. I saw this plan, perfect or not and was so touched that I cried. I have fought for my son for 10 years and have paid close to 100,000 in care out of my own pocket ( which now makes me less than Middle Class). I have fought LAUSD, Regional Centers and everybody else to get him care- these are places in Calif and Los Angeles. Let’s look at the positive — especially parents with kids with Autism and Aspergers do we want this out in the open so we have an advocate in the White House or hissen in the dark corners for another decade? We need support for our kids – pure and simple!!!

    • http://www.thomaspages.org/bloggg Moi ;)

      Remember, Hillary has no health insurance plan that pays for autistic issues. No universal health care. It’s all empty words. So much for her “autism plan”…..

    • http://www.thomaspages.org/bloggg Moi ;)

      KimJ – Tax and Spend – sounds like the current administration….they have cornered the market on spending….

    • http://www.autismvox.com Kristina Chew, PhD

      Lyn Wessels of ACHAMP applauds Sen. John McCain for supporting famiies with autistic relatives, though without referring to what the Senator’s stance on funding, programs, research, etc. for autism is.

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    • http://www.autismvox.com Kristina Chew, PhD

      Professor John J. Pitney, Jr., provides an overview of the Democratic and Republican candidates’ views on autism (and notes that “The GOP silence is puzzling”).

    • Regan

      The trouble with looking at the administration alone is that there could be some dependency on the composition of the Congress, and changes in midterm elections. At least it might be the case that a veto might not be an additional concern, as has been true in the current administration.
      So I am interested in the campaign, and Obama and Clinton have the most interesting platforms, but the campaign and the term of office sometimes don’t completely overlap.
      Meanwhile, Expanding the Promise for Individuals with Autism Act of 2007
      H.R. 1881, S.937
      http://www.autismspeaks.org/government_affairs/services_bill.php#currentstatus
      are current bills in play, and still looking for sponsors.

    • http://hfamom.wordpress.com Esther

      Of all the possible political issues playing out in this campaign autism and economy are the two that rank the highest on my radar.

      I like Richardson– his focus on education and what he has done for autistic folks in New Mexico but, I’m concerned that he isn’t really viable… maybe as VP?…

      What’s left? I don’t like Clinton, Obama doesn’t seem to have the experience to do well overall but he has the “presence”, Edwards is a good choice by default, I guess…

      Have you decided on candidates to back? Your thoughts?

    • Paula

      Re: Obama’s purported “lack of experience.” Read *Barack Obama: The Improbable Quest* by John K. Wilson, published by Paradigm Publishers in 2008. You can find comparative statistics about the candidates’ experience in the second chapter.

      Obama has spent more time as an elected official than all the other candidates but John McCain. Obama has 12 years of legislative experience (8 in his state senate and 4 in U.S. Senate by 2008). Clinton has 8 years overall, in the U.S. Senate, Edwards 6 years in the U.S. Senate, Giuliani 8 years as mayor of NYC, Romney 4 years as governor of MA…

      The media keeps saying Obama does not have the experience, but actually he does, and he has international experience gained by living overseas, insight into domestic issues by being a community organizer for many years. He has made trips to something like 13 other countries.

      Anyway, the book I mentioned is a good source of facts about Obama, facts that the media ignores for whatever reason.

    • http://enemiesofthelibrary.blogspot.com Justthisguy

      Yeah, Paula, but it was in Illinois, and that means he’s tainted by association with the Daley/Chicago machine.

      I’ve just heard that he came out ahead of Hitlery in the S.C. primary, which is a good thing, I reckon. I mean, he’s wrong-headed, doesn’t understand the constitution, isn’t really culturally an American (sorry, Hawaii doesn’t count) but at least he’s not down’n dirty maliciously evil, and out to destroy what’s left of the republic, like the Hilldebeest.

    • http://www.rettdevil.org Kassiane

      Daley was a mayor, not a governer, correct? Not like the IL governers were wonderful, but the capital of IL is SPRINGFIELD.

      That’s a 5 hours drive, if not more. It isn’t like the Chicago Machine can teleport.

      And the General Assembly works with the Governer, not the Mayors.

      (I knew growing up in IL and paying attention in US Govt would come in handy some day)

    • http://enemiesofthelibrary.blogspot.com Justthisguy

      P.s. Oh, and he’s willing to listen to auties.

      If he’ll do that, maybe he’s approachable on other issues!

    • http://enemiesofthelibrary.blogspot.com Justthisguy

      Kassiane, the general consensus on the net, from what I can tell, is that the current Governor of Illinois is Daley’s bitch, to use crude criminal language. Chicago distorts the politics of the entire state.

    • http://www.rettdevil.org Kassiane

      I lived in downstate IL, and I didn’t see much dirty Chicago politics…

      However, I was also very young, then bitter about being too young to vote by 10 days. Now the Ryan stuff, everyone saw THAT.

    • Dadvocate

      Confirming Kassiane’s view on Barack Obama. My wife and I met him (no tackling!) in 2003 at a fundraiser and have spoken with him several times since re autism. We do these types of events fairly regularly and chew on politicians ears about one issue only when we’re at them. Funding appropriate community based services for people with autism.

      Obama knew the issues cold and is surrounded by advisors who do too. I’m a big supporter but do think HRC or JE would also be a big improvement over what we have in place now.

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    • Broombie

      Autism is a complex issue. Comprehensive plans must be made to care for all individuals on the spectrum from birth through adulthood.

      In this geological area, the lower end of the Autism Spectrum seems to get better lifetime care than those who are on the higher end of the spectrum. I have heard statistics which state that 75% of individuals with Asperger Syndrome are unemployed. When the economy goes bad and unemployment rises, those with Asperger Syndrome suffer even more.

      Some needs as I see it are:

      1. Many teachers have natural empathy for students with autism. I would focus and develop these specific individuals. If a person cannot understand someone with ASD, then no amount of training will help them.

      2. Schools and universities need a comprehensive curriculum to help those with ASD cope with the world. It should start with early intervention and continue through university. It should actually be a lifelong process.

      3. Peer trainings and interventions are so important. There should be greater consequences for those who bully individuals with ASD’s. It could possible be something of the nature of a hate crime.

      4. Candidates are making statements about Autism because advocacy groups have made it an important issue. The candidates’ plans will often be centrist and unsubstanstial. That is because the best political strategy is to cater towards the center of the political spectrum.

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    • http://www.libertariansocialist.blogspot.com Jason Stumpner

      The problem I have with genetic research is that they will find the cause of autism, but not be able to do anything about it. I have high functioning autism, and I feel that my condition is just a natural part of whom I am as an unique indivisual. It can not be “cured”, any more that Down’s Syndrome can be cured. Yet after the extra chromosome which causes it was discovered, Down’s babies have been killed in the womb. I am just concerned that Asperger and Kanner autistics might meet the same fate someday.

    • http://ladylimoncello.multiply.com/ Florence

      I have two sons on the spectrum and feel the same way. We have quite a few family members that could very well be diagnosed as PDD now that were not growing up. Using the word disease kind of sends the wrong message. Since the umbrella has widened on diagnosis we have to find a way to bridge the gap between advocacy and research that best suits everyone. Every child is different and their needs are different as well. There is no one-size-fits-all policy that will help. We need to recognize the individual first.

    • Stephanie

      Jason,
      You make an amazing point about the possibility of what could happen to autistics the same as what often happens when the extra chromosome is discovered to cause Down’s. The sad thing is you’re absolutely right. My 4-year-old son was diagnosed with ASD a year ago and we consider him to be relatively high functioning, although we still have a lot of work ahead of us. I have never met an adult, or even teenager for that matter, with Autism. I am absolutely impressed with your insight on this issue. I agree with you that autism is a part of who you are. While I am obviously interested, as a mother, to know what caused the Autism in my oldest son but not my youngest, I would never in a million years trade either of my boys. While I certainly want to do everything in my power to make life as manageable as possible for him, my position has always been he is who he is and if you don’t like it, it was nice knowing you.

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    • Zachary Lassiter

      Kristina,

      I just wrote a letter to Obama Regarding His Autism Agenda and I would like your comments.