Autism services: questions the next IACC should address part 1

14 Jan

Take a look at the original law that set up the structure for how the U.S. coordinates autism research: public law 109-416 (sometimes called the “combating autism act”) and you will find paragraphs like:

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements

Now take a look at the wording of public law 113-157 (what was called the “Autism Cares Act“)

(5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports for individuals with an autism spectrum disorder and the families of such individuals, which shall include–

“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative;

See that whole bit about “including as practicable for services and supports for individuals with an autism spectrum disorder and the families of such individuals”? There’s a big emphasis on services in the new law and the next IACC will be addressing this in the future strategic plans.

There are so many areas of services that could use attention it is difficult to find one to single out as the first I’d like to see given attention. But I am going to say that services for autistic adults need more attention. With that I can predict that some people are thinking I’m saying jobs and independent living. And sadly some people don’t see that as important. But this is not what I’m focusing upon here. No, I’m thinking of what services are needed to make supportive living most appropriate for autistics. There is so much discussion of the unique and specific educational needs of autistics, especially in preschool, but there isn’t much discussion of what makes an appropriate placement for adults. If I’ve learned anything from observing many, many classrooms it’s that people with


By Matt Carey

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12 Responses to “Autism services: questions the next IACC should address part 1”

  1. Seth Bittker January 14, 2015 at 18:58 #

    Matt,
    This is a significant difference that you have highlighted. Thank you for highlighting it. I much prefer the previous version of the law in this area as it seems to me that research on the fundamentals of autism and work in particular on biochemistry and compounds that might ameliorate the dysfunction (which admittedly is a small part of autism research funding) would be of greater benefit to those with autism.
    With respect to research on services, I appreciate the importance of getting services to people with autism and have personal reasons for interest in this given that I have a child affected like you. However it seems to me that this is likely to lead to more studies on how to deliver services to people, how people use services, what services are needed, and costs of various services. There are already a lot of studies like this and it seems to me the vast majority are of little value. In some cases the results are common sense, in other cases they are advocacy masquerading as research, and in many cases they are not very scientific. Funding more soft studies like this seems like a misallocation of resources.

    • Sullivan (Matt Carey) January 14, 2015 at 20:24 #

      “I much prefer the previous version of the law in this area as it seems to me that research on the fundamentals of autism and work in particular on biochemistry and compounds that might ameliorate the dysfunction (which admittedly is a small part of autism research funding) would be of greater benefit to those with autism.”

      I don’t think this is a small part of autism research funding. You may want to take a second look at the research portfolio. https://iacc.hhs.gov/portfolio-analysis/2010/index.shtml#types-asd-research-funded

      Biology accounted for about 21%. Treatments about 17%. Also, I’ll point out that people have been looking for 50 years for medical approaches to autism. Probably this has been going on for hundreds of years, but I’m thinking of the modern approach that started in about the mid 1960’s. How far has that come?

      ” There are already a lot of studies like this and it seems to me the vast majority are of little value.”

      What studies are there on what makes an appropriate housing and/or day program for autistic adults who are minimally or nonverbal? What studies even demonstrate what measures should be used to determine appropriateness?

      From my perspective, some of the best research in the past 5 years has been that of Paul Shattuck (Washington University of St. Louis) and David Mandell (U. Penn) on services. Prof. Shattuck focused attention on the teen to adulthood transition and showed that there is a huge gap there. Prof. Mandell has covered a number of subjects including providing services to younger school age autistics, medicaid access and use, under representation by minorities, etc.. I.e. there’s been good work on services and it is making a change.

      • Seth Bittker January 16, 2015 at 16:32 #

        Hi Matt,

        With respect to biology being 21% of research funding I would guess that a significant part of this funding is devoted to genetics and possibly neurology (I can’t think of a greater waste of research funding than more brain scan studies) both of which it seems to me are massively over-funded. I have seen very few studies which focus on biochemistry (exclusive of these two areas) which is fundamental to many cases of autism. There isn’t even a clear appreciation among researchers that autism is often characterized by dysfunctional biochemistry. One good study that was done recently in this area is: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0112445. It would be interesting to know where Paul West and his colleagues got their funding from but I think much more should be done on biochemistry with younger at risk children and developing treatment protocols for particular biochemistry.

        With respect to treatments being 17% of research funding, it seems like the vast majority of treatment studies are based behavioral or social stimulatory treatment protocols such as ABA or variants of ABA or floor time, and their conclusion is almost always that more therapy is better. Some also suggest earlier is better. Do we really need more studies like this? I think not. It seems to me that empirical experimentation with candidate compounds would be much more valuable. I would like to see double blinded trials with compounds which could include antioxidants, methylators, and sulfation agonists in those with autism with such dysfunctional biochemistry.

        With respect to appropriate housing and/or day program I hear your that there is a need for such programs and I agree that it could be studied and perhaps a study or two makes sense. What I fear is that a lot of money could be spent on studies in this areas and the conclusions may be we need more appropriate housing and day programs that are tailored to the needs of those with autism and we need more research. In other words, the conclusions may be obvious and merely justify more studies. I hope your right that some of the funding that has gone into studies on services do ultimately help people.

      • Sullivan (Matt Carey) January 16, 2015 at 19:38 #

        “With respect to biology being 21% of research funding I would guess that a significant part of this funding is devoted to genetics and possibly neurology”

        The IACC has a portfolio analysis tool online. You can check for 2008, 2009 and 2010 what was spent on biology. And, no, it’s not genetics. Genetics tend to be in question 3, etiology (biology was question 2). There is some neurology, but not as much as you may think. The paper you link to is almost certainly categorized as one in the biology portfolio.

        If the conclusions of these studies are obvious, please enlighten those who are right now looking at the transition for their kids. Finding appropriate housing is non trivial.

        “With respect to treatments being 17% of research funding, it seems like the vast majority of treatment studies are based behavioral or social stimulatory treatment protocols such as ABA or variants of ABA or floor time, and their conclusion is almost always that more therapy is better”

        You do a lot of “guess” and “it seems”. I encourage you to work from the data. Much of the data are available. Your guesses are not accurate.

  2. jonathan January 15, 2015 at 19:27 #

    hopefully you won’t be a public member on the IACC next year.

    • Lawrence January 15, 2015 at 21:35 #

      Why?

      • Science Mom January 16, 2015 at 19:49 #

        Because jonathan is a bitter vaccinesdidit person who resents parents like Matt who has worked to improve the lives of all autistics, not just pander to the martyr parents.

      • Sullivan (Matt Carey) January 16, 2015 at 22:19 #

        I believe it has more to do with his perceptions of treatment. He opposes many public members whom he believes were anti-treatment. Myself, whose family participated in a clinical trial, John Robison, whose next book will be about his experiences from a specific treatment program, and Noah Britton, who wrote the IACC Strategic Plan section on treatment. But we are anti-treatment in his viewpoint, if I recall his statements. I stopped reading his blog long ago so perhaps he’s changed his viewpoint.

  3. Autism Services January 16, 2015 at 06:05 #

    The IACC’s Services Subcommittee will meet soon to consider a draft letter to HHS Secretary Kathleen Sebelius advising her on the ACA issue.

  4. Jonathan January 17, 2015 at 04:55 #

    Science Mom, you don’t know what you are talking about. I’ve never believed that vaccines cause autism. Matt Carey, it is unclear what your positions are on treatment. I just know that you’ve always tried to stick up for ari ne’eman who has opposed curing autism, and has stated he does not believe that autism is a disability and lied about it and you tried to justify his lying and tried to help him with that. You presented an edited view of his ‘difference is not disability’ schtick. You also use the word ‘neurodiversity’ casually and I find the word just as offense as the terms ‘retard’ ‘faggot’ or ‘nigger’ Even if others don’t at least it is perceived that way in the eyes of this beholder. You are also ignorant of federal law on special education. ’nuff said. It’s a shame you stopped reading my blog, perhaps you’d actually learn something about autism.

    • Sullivan (Matt Carey) January 22, 2015 at 23:04 #

      This sort of response is a good example of why I don’t read your blog. Responding back and forth to correct misinformation like this isn’t productive (I haven’t seen evidence you listen) and it takes things back to the old battleground of online discussion. You will likely take it that my calm, measured response, is somehow angry or something.

      “Matt Carey, it is unclear what your positions are on treatment.”

      See, I read that I know that unless you’ve changed your style, you have been making very specific comments about me and my positions. But how can you do that when I am “unclear” on my positions? It comes across as a bit of a blameshifting game, where you make it seem my fault that you don’t know my positions. But, that didn’t, nor do I suspect it will in the future, change your approach.

      I’ve noted that my family has participated in a clinical trial. In this discussion. And previously in comments here and elsewhere. I don’t expect you to read what I write so I am not surprised you didn’t read it before, but I just made that statement.

      You have stated that it is your hope that I am not reappointed to the IACC. You have not presented any example of my efforts on that Committee with which you disagree. What did I say my first time on the committee?

      Lastly, I would say my own work, I am a researcher and an engineer. I see a lot of excellent research going on here. I would say I would like to see more engineering, which probably would be translational work, see more subjects have an impact on bettering the lives of autistics and their families.

      What does translational mean in this context? Here’s one definition of translational medicine

      Translational medicine (also referred to as translational science) is a discipline within biomedical and public health research that aims to improve the health of individuals and the community by “translating” findings into diagnostic tools, medicines, procedures, policies and education

      As an aside, one will also find my statements about how I was expecting more environmental risk factor research in the IACC’s research portfolio. I bring this up because I am also often accused of opposing environmental risk factor research.

      So, let me search your blog for my name.

      You once wrote ” Left brain right brain blogger and IACC member Matt Carey, who is apparently against curing autism”. Where did you get the “apparently against curing autism” if my views are “unclear”? That’s not a rhetorical question. You’ve made a statement, please back it up.

      Or

      Mr. Carey, I realize a prestigious blogger and public member of the IACC probably won’t take the time to read my piddling gadfly blog. However, I wonder how you can equate claiming that the atypical neurologic development is not an impairment, but rather a human normal difference to dignity and respect?

      Interesting how you frame that. I don’t read your blog because I don’t find it interesting. I don’t find it interesting for many reasons, primarily because you spend a great deal of time fighting straw men, like the one above. Or do you prefer the term “false dichotomy”. Why can’t a person with a disability have a right to dignity and respect? Disability and dignity, not disability or dignity. Again, show me where I made the claim you attribute to me, if you would be so kind.

      And,

      ” The motto of Kevin Leitch who created the autism hub and in fact is Mr. Carey’s predecessor as the main author of the blog that Carey now writes for was “We don’t need no stinkin’ cure”.”

      I’m not Kev Leitch. An important point. Funny how you didn’t take the one he replaced that phrase with.

      Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocacy, acceptance, and a positive outlook.

      He changed that in 2006. Well before I started writing.

      “You are also ignorant of federal law on special education.”

      I remember your argument with that. You linked to my blog and I followed the link. I thought about correcting your mistake (as you are mistaken), but instead moved on. As in stopped reading the links to your blog that would used to pop up here.

      In reference to Ari Ne’eman, you state:

      “You presented an edited view of his ‘difference is not disability’ schtick.”

      I am not Ari Ne’eman.

      But, again, please help me out here. How did I edit it? What is my position on this, my edited view? Hint, based on your phrase above, you have it wrong. And please don’t say that I’m unclear. You made the above statement which presumes that you are referring to a specific instance of what I write.

      You are stuck fighting straw men from a 10 year old discussion. That is first and foremost why I have had little interest in reading what you write.

      Let’s bring you up to speed, even though you will likely just dismiss what I say and claim I am changing my views or something.

      Disability is a difference. By definition. So we have difference and disability, not disability or difference. As in “disability is a difference. Disability does not reduce one’s value nor does it reduce one’s rights.”

      While we are at it:

      I’m not a part of your “cure” war. Sorry, but you have me mistaken for someone else. I do often point out that many of the “cures” offered by the alternative medical community are abusive (e.g. Lupron, chelation, bleach enemas). I believe that the language sometimes used to sell these cures (which can be as extreme as better dead than autistic) is harmful. And for that I get the label “anti-cure” by those who won’t face those arguments head on. It isn’t about whether it is right or wrong to cure, it is about the fact that these are not cures and they are abusive.

      Here’s a hint: there’s currently no cure. There isn’t one in clinical trials. If a cure comes up, it will likely be more of a way to guide a very young person’s developmental trajectory rather than treatments which are focused on older children or adults.

      And there isn’t even a clear definition of what a “cure” would be. I’ve seen a parent state that eliminating self injurious behaviors would be a “cure”. Others consider not being autistic a “cure”. Those who have “optimal outcomes” (a definition used in a series of papers on individuals who were but are no longer autistic) have other significant disabilities. Is it a cure if one still has disabling anxiety or other conditions?

      My goal as a parent is the same as it would be without an autistic child–to do what I can to bring said child happiness. One can be disabled and happy. One can be non-disabled and unhappy. (and, yes, one can fill out that matrix with disabled and unhappy and non disabled and happy). The point is, do I spend my life focused on a path that doesn’t exist, may not ever exist and may not bring my kid happiness?

      There is a very important discussion that needs to be held on autism and cure. It *is* a very different discussion when we are talking about how one thinks. What else defines one’s identity so clearly? When I acquired my disability, it made a big change in my life but it didn’t fundamentally change who I am. People have a right to be proud of who they are, even if that identity includes a disability. People have a right to point out that they would refuse a cure if that would mean changing their identity. And people have a right to accept a cure (should one ever come) even if it means changing their identity. By the way, had you actually read what Kev Leitch had written over the years, you would have seen that he made that point very clearly on this site.

      I’d like to see a world where autistics (and all those with disabilities) can be valued and supported. If a cure came into being, a person could be valued and respected either way. There are treatments in the works, but no cure, though. Is one going to happen within my kid’s lifetime? Maybe not. Can people change their attitudes about people with disabilities? Absolutely. It’s already happened. There’s a long way to go, but this is a possible path. Will acceptance, respect and support erase my kid’s disability? No. But life will be better with it than without it.

      I guess I could spend all my time talking about cures. I don’t have the interest. I’d rather work on things that I can change.

      And, if you could point to one instance of me opposing treatment while on the IACC, you would. You can’t because it never happened.

      And, none of this is new. Feel free to write a blog post wherein you misrepresent what I have written. It doesn’t matter.

    • Sullivan (Matt Carey) January 25, 2015 at 18:03 #

      As you may have noticed by my last comment, I avoid getting pulled into speaking for others. You mentioned Ari Ne’eman, claiming that he stated “and has stated he does not believe that autism is a disability”

      You have a link for that? If so, mind providing it and telling us when he made that statement?

      Just yesterday I saw a conversation where the question was posed, “Is autism a disability”. Ari responded simply, “yes”.

      Will you include in your future discussions of Mr. Ne’eman an accurate representation of his current view? Not a rhetorical question, by the way.

      Also, if you want a cure, what do you think is the best approach to one? The current research portfolio funds both biology and treatments at quite high levels. Real progress will come from an understanding of the biology, in my opinion.

      You are reminding me of another person who occasionally comments here. A parent who likes to tell me what my positions are and, when given clear evidence his statements are incorrect, just leaves and continues to make the incorrect statements elsewhere. I do hope I am wrong about you, but that’s the trend I see so far.

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