Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

22 Responses to “Autism research funding: who is paying and how much?”

  1. Lex Douvasa July 21, 2009 at 19:00 #

    Greetings!

    I was intrigued by your subject so I read through the article, it seems like you really have done your research. I was looking for a more appropriate place to position this question, but this was the closest post I could find related to autism-research and I would really value the opinion of this community if anyone could spare a few minutes out of their days to shoot me back a reply!

    I was just curious as to what the effects of the new recovery-movement is on autism treatment and research? Has anyone experienced differences between a recovery-based and non-recovery-based clinic?

    I ask because I recently started up a blog, the Mental Health Recovery Blog, which I am trying to create a dialogue for everyone related to mental healthcare (consumers, practitioners, advocates, family members, community members, etc.) as to explaining what this Recovery Movement is, how it affects treatments, what is good about it, what is bad about it, what practitioners should improve, what consumers should know, etc. and I would really really value the articulate input of this community.

    Also if you wouldn’t mind I might even like to reference a few quotes if you are comfortable with that in my postings or articles.

    Again my apologise for the awkard placing of this comment! But I would really really love to know your take on how the new recovery-approach is affecting autism treatments.

    If your not familiar with the recovery-movement, then there are a few resources that you can check out such as:

    1) Mental Health Recovery Principles
    2) MHCD and Mental Health Recovery
    3) Mental Health Recovery Model

    I have also submitted several much more official articles to ezineArticles that are awaiting publications that have less to do with MHCD and are more generally informative which if anyone would like to read them I’d be more than happy to shoot you a link. Please don’t think I’m trying to promote anything for MHCD though, that is just where my knowledge base is from; I am interested in finding out the broader scope of autism and recovery, so any input at all related to any facility would be great!

    Thanks so much for your time and I look forward to speaking more with anyone who can on the subject!

    Warm Regards,
    Lex Douvasa
    Mental Health Recovery Blog
    MHCD Research and Evaluations

  2. Barry Morse July 21, 2009 at 19:08 #

    Please follow this hypothesis:
    Plastic is the cause of the rapid rise in autism.
    The human brain works primarily by electrical energy. Plastic is an excellent insulator. Plastics photo-degrade; they get smaller but remain as plastic. During the time of fetal neural development, at the moment that the nerves should make connection, they are blocked from doing so by a piece of plastic. I believe the autistic mind produces the same amount of electrical energy and that energy has fewer areas of diffusion. This is evidenced by the heightening the various senses experienced by the autistic individual. Note the rapid rise in autism in the last twenty years and consider the time it would take for the plastics to infiltrate our ecosystem or the direct ingestion of photo-degraded liquid by pregnant women.
    I am aware of how much is said about the effects of plastic but I have never heard of it in the above context; that the plastic itself is acting as insulating particles in the electrically based environment of a developing fetus’s brain resulting in neural dysfunction…as if there was a small piece of plastic blocking the neurons from connecting.
    The easiest way to see this is to take a plastic bottle of drinking water and freeze it. Let it thaw and sit. Turn it upside down, turn it into the light and see the shiny plastic particles descend in the water that you are about to drink.
    I believe that this hypothesis bears investigation.
    Thank you for your consideration.

  3. cpu52362 July 21, 2009 at 20:56 #

    Howdy Lex,
    You might not get much of a response, as many are of the opinion that Autism Spectrum Disorders are medical/neurological, not mental.

  4. cpu52362 July 21, 2009 at 21:03 #

    Howdy Barry,
    The idea you mention could be possible, but research would need to be done to show that the suspected particles are able to pass through the digestion process into the bloodstream and then across what is known as the blood/brain barrier. In the end run, I doubt they would remain intact and make it to the brain, more likely be dumped out like roughage, but I am not qualified to give anything more than opinion on this.

    • Sullivan July 21, 2009 at 21:17 #

      cpu52362,

      I would further add that these particles would be detectable in autopsies. I’ve never seen anyone mention anything of the sort in autistics or non-autistics.

      One might question why neurons don’t just grow around the plastic particles. The brain can form with cysts and still be quite functional. Also, how does this turn to autism? Why not an increase in other diagnoses?

  5. passionlessdrone July 22, 2009 at 00:03 #

    @ Sullivan –

    Nicely presented post.

    One thing I hear thrown around a lot is that we are wasting ‘too much’ researching vaccines; while I realize that many (including, possibly you), feel that $1 dollar is too much, I was curious if a real breakdown was availalbe?

    I would tend to think that vaccine research makes up a pretty small slice of all research funding for autism, but reliable sources of information on that are difficult to find, and it isn’t all that important to me to know for sure. But I am curious. Is that nugget hidden in there somewhere for relatively easy retreival?

    Also, very nicely done re: resurrecting the notify of comments via email.

    – pD

  6. Sullivan July 22, 2009 at 01:42 #

    pD–

    I am not trying to dodge the question with this, even though it may appear so:

    I would place most proposed vaccine/autism question as a vaccine project that should get input from the autism research community. This is opposed to it being an autism project with input from the vaccine research community.

    For example: Hannah Poling/mitochondrial disorders. I think there is a project going ahead with this, but it as a mitochondrial/vaccine project, not an autism project. It doesn’t show up in the autism funding to my knowledge.

    David Kirby states that there are proposed vaccine safety projects looking at autism as one of the potential outcomes. Such a project (or projects) is (are) clearly more general than just autism and should be directed and funded outside of autism.

    That all said, there is funding for environmental factors in autism. Whether vaccines are covered in those projects is, at present, unknown to me. There is no mention of “vaccine” (or vacci*) in the portfolio. I’ll try to post the slides from the IACC here soon.

    Also, very nicely done re: resurrecting the notify of comments via email

    I wish I could take credit for that. I just used an existing plugin–one that wasn’t compatible with the comment system in place until recently.

  7. Michelle Dawson July 22, 2009 at 02:21 #

    In my view, those are not good questions. They are poorly stated and a bad way to divide up research issues. They are based on some unfounded assumptions and they leave out crucial questions.

    Setting that aside, the question of what autism is (what makes a person autistic, and not nonautistic), were it asked in a useful way, is not irrelvant to autistic adults. It is a very important question.

    Also, decisions related to autism intervention research, regardless of the age of the targeted autistics, have a major effect on how all autistics are understood (or not) and treated. This is regardless of whether or not we are undergoing any particular kind of intervention at any time.

    And so on. All autism research affects how all autistics are regarded and treated. Dividing things up into arbitrary questions of interest to some individuals is not informative about the possible and actual consequences of research funding.

  8. EquiisSavant July 22, 2009 at 05:35 #

    Amazing so little is being allocated to where to turn for services for the ENORMOUS adult with autism population now being vastly wasted.

  9. rambert July 22, 2009 at 15:13 #

    I thought that the pharmaceutical industry spent hundreds of millions of dollars on vaccine research every year – all of which has ‘proved’ that their products are totally safe. They won’t have to bother so much with the swine flu vaccine, of course, if they get legal immunity.

  10. RAJ July 22, 2009 at 20:00 #

    The Simons foundation mainly funds genetic research:

    https://sfari.org/2009-rfa;jsessionid=AC789AC871C90EBCB29770104D14890D

    They do not fund any research investigating environment or gene-environment research.

    Autism Speaks and the NIH has recognized the failure of genetic research to identify any gene specific to ASD and is now funding environment and gene-environment research as well as genetic resarch.

    The lion’s share of research into etiology still goes to genetic research.

    The most important research currently underway with results not expected for several years is the California Autism Twins Study (CATS). Twin studies in ASD has always been classical twin sudy design that records the prevelance of concordance rates in identical twins versus fraternal twins. Classical twin study design cannot distinguish genetic transmission from genetic susceptability.

    There are two types of identical twin pregnancies, single placenta where both twins develop in the same prenatal environment and seperate placenta prgnancies where identical twins develop in seperate prenatal environments.

    Identical twin concordance rates in ASD have been reported as 60-90% and the concordance rates in fraternal twins (who always develop in seperate placentas has been reported from 5-24%.

    About 66 precent of identical twin pegnancies are single placenta pregnancies approximately the same as the concordance rates of ASD in twin studies of identical twins.

    The CATS will record concordance rates of identical twins by placentation status. Two possible results may change the direction of ASD research for decades to come. If concordance rates in identical twins who share the same prenatal environment (single placenta) are significantly higher than concordance rates in identical twins who do not share the same prenatal environment (seperate placenta) it will demonstrate for the first time a previously unrecognized strong prenatal environment component in ASD etiology and convincing evidence that ASD is a gene-environment interaction disorder.

    No difference in concordance rates between the two types of twin pregnancies would be powerful evidence for the strength of the gene-gene interaction model.

  11. passionlessdrone July 22, 2009 at 22:51 #

    Hi Raj –

    Slightly OT, but might be interested in checking out this study:

    Gene expression profiling of lymphoblastoid cell lines from monozygotic twins discordant in severity of autism reveals differential regulation of neurologically relevant genes.

    Anyone might be interested in it, but RAJ seems particularly interested in twin based studies. Anyways, I felt this was particularly clever in that they were able to observe differential gene expression in twins that had different measures of autism severity. In a seemingly recurrent theme, genes involved in mediation of inflammation were among those found to be differentially expressed. I do not believe placental environments were evaluated.

    – pD

  12. Ed July 22, 2009 at 23:15 #

    “We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?”

    When I hear about how certain funding like this should be increased I’m reminded of the goals of such research are fundamentally opposed to the goals of the people who fund the research. The researchers not only don’t want to understand autistics any better but they have a great need for misrepresenting who we are and hiding the truth that we can tell them.

    The NIH is not like any other place in the world. When you look at how screwed up the U.S. medical system and medicare are and why there must be incentives in place that prevents rocking the boat that keeps it screwed up, you see where NIH loyalties are. They are dedicated to serve and protect the national interest.

    Until the national view of autism changes, a national agency isn’t just going to not do enough to understand autistics, they are going to be motivated to suppress the information of who we truly are.

  13. Prometheus July 23, 2009 at 00:00 #

    I’m still not sure if the comment by Barry Morse was serious or just a really subtle spoof. The problems with spoofing in the field of “alternative” autism causes and cures is that the real “alternative” causes and cures are so “over the top” that it’s difficult to tell a spoof from the real thing.

    RAJ, I’m assuming that your point about the mono-amniotic and di-amniotic twins is that there might be some difference in their “environmental exposures”. Given that both mono- and di-amniotic twins get all of their oxygen, nutrients and “environmental exposures” from the same source (i.e. the maternal blood), this seems to be a distinction without a difference.

    Unless you are arguing that the left side of the uterus gets appreciably more (or less) “toxins” than the right (which seems to go against known circulatory physiology), I can’t see how this could make a difference with environmental exposures.

    However, the placentation of monozygotic twins does say something about when the original zygote split – although the split generally has to happen within the first 14 days after fertilisation to avoid having conjoined twins.

    It is also worth mentioning that mono-amniotic twins have a higher morbidity and mortality than di-amniotic twins, in part due to their shared placenta. This may skew the results, due to perinatal injury.

    It is possible that the study you cited is examining the placenta in order to tell true monozygotic (“identical”) twins from dizygotic (“fraternal”) twins of the same sex. That would actually make sense, as mono-amniotic (and mono-chorionic/di-amniotic) twins are always monozygotic.

    Prometheus

  14. Sullivan July 23, 2009 at 02:54 #

    Autism Speaks and the NIH has recognized the failure of genetic research to identify any gene specific to ASD and is now funding environment and gene-environment research as well as genetic resarch.

    Nice job putting words in other people’s mouth’s. Your statement is completely unsupported by the facts: the amount of money both AS and, especially, NIH are putting into genetic research.

    If your effort is to try to paint the Simons Foundation as somehow behind the times, you need to try better.

    There are two types of identical twin pregnancies, single placenta where both twins develop in the same prenatal environment and seperate placenta prgnancies where identical twins develop in seperate prenatal environments.

    Not totally accurate. You may want to look up terms like “monochorionic” and “Monoamniotic”. too. While you are at it, you could note that even though a set of twins share the same placenta, they do not have identical environments.

    Anyone who has spent any amount of time with monozygotic twins knows the term “identical” is to be taken with a big grain of salt.

    That said, more careful twin studies are one of the best avenues of research I can think of. Anecdotal reports are that the autistic presentation of monozygotic twins can vary significantly. Sounds like a good avenue of research. It does focus environmental research on the prenatal environment–the main (or only) environment that has been shown to be important in autism.

  15. Sullivan July 23, 2009 at 02:59 #

    it will demonstrate for the first time a previously unrecognized strong prenatal environment component in ASD etiology

    I guess you didn’t listen to Patricia Rodier testify in the Omnibus Proceedings–she made it abundantly clear that the prenatal environment is key. Most, if not all, of the environmental causes are not only prenatal, but are important within a few weeks time period during gestation.

    Fascinating stuff. Well worth the read. Especially if you are going to assert that this is a “new” eitiology.

  16. Sullivan July 23, 2009 at 03:01 #

    In my view, those are not good questions. They are poorly stated and a bad way to divide up research issues. They are based on some unfounded assumptions and they leave out crucial questions.

    I’d be very interested in hearing more about this–especially what questions are being left out.

    That said, I would sincerely doubt that the strategic plan will be rewritten around a new set of questions, just based on an “inertia” standpoint. They already have the framework in place, and future updates will likely be adding to and modifying that basic structure.

  17. Michael Paluszek July 23, 2009 at 19:56 #

    This is a great fantastic blog. I’m with a public relations firm in NYC. We work with Rethink Autism. Here’s something related you should know about/might help/thought you might be interested in. Text/video links follow to compelling piece about Rethink Autism that ran on WCBS-TV Ch. 2 (Max Gomez) in NYC last night/this morning. (link to segment) http://wcbstv.com/video/?cid=49 (link to text) http://wcbstv.com/health/healthwatch.autism.treatment.2.1097038.html

  18. RAJ July 23, 2009 at 21:26 #

    “RAJ, I’m assuming that your point about the mono-amniotic and di-amniotic twins is that there might be some difference in their “environmental exposures”. Given that both mono- and di-amniotic twins get all of their oxygen, nutrients and “environmental exposures” from the same source (i.e. the maternal blood), this seems to be a distinction without a difference””

    Prometheus, There are differences in the two types of twins who develop in different prenatal environments and the studies that have been published are directly associated with various aspects of autism research. These studies show the MZ Monochorionic twins (MZ/MC single placenta), are more alike than MZ Dichorionic (MZ/DC seperate placenta) twins even though both MZ subtypes may be equally vulnerable (genetic susceptability) to the same gestational insult. These studies all suggest a bias in classical twin study design in not accounting for the chorion effect of seperate prenatal environment in MZ twin pairs:

    Schizophrenia:
    http://www.ncbi.nlm.nih.gov/pubmed/7481567?

    Brain structure
    http://www.ncbi.nlm.nih.gov/pubmed/12001090?

    IQ Variance:
    http://www.ncbi.nlm.nih.gov/pubmed/11545537?

    http://www.ncbi.nlm.nih.gov/pubmed/568880?

    Personality development:
    http://www.ncbi.nlm.nih.gov/pubmed/7487842?

    X-inactivation:

    http://www.ncbi.nlm.nih.gov/pubmed/8790602?

    Classical twin studies which do not account for the chorion effect can lead to false interpretations. For example, leprosy is caused by infection after exposure to myobacterium laprae, but twin studies in leprosy have reported the same high concordance rates (60-85%) in MZ twins and the same rapid falloff (5-20%) in DZ twins as ASD twin studies have reported:

    http://www.ncbi.nlm.nih.gov/pubmed/11279529

    The California Autism Twin Study is the first group to control for a chorion effect bias and the results one way or the other will have a profound impact on the future direction of autism research.

    Kev, please delete the previous comment attributed to my wife’s account which is incomplete.
    Thanks

  19. Patrick July 24, 2009 at 22:58 #

    Re Rethink …
    “The parent answers a brief questionnaire about their child and the site generates an individualized plan.”

    This sounds to me like someone is using an oversimplified cookie cutter approach to sell videos.

  20. Prometheus July 25, 2009 at 03:57 #

    My apologies, RAJ, I thought that you were implying that di-amniotic and di-chorionic twins received different amounts of environmental “toxins” – this is a common mis-interpretation of the term “different prenatal environment”. I shouldn’t have jumped to that conclusion without asking you to clarify your position.

    I might point out, though, that many of the twin studies you cited are quite old. More recent work on the differences seen between monozygotic twins has taken into acount what we now know about the stochastic nature of gene inactivation, maternal RNA effects, mitochondrial partition and other epigenetic phenomena that affect fetal development, sometimes profoundly.

    Prometheus

  21. RAJ July 25, 2009 at 05:21 #

    “I might point out, though, that many of the twin studies you cited are quite old. More recent work on the differences seen between monozygotic twins has taken into acount what we now know about the stochastic nature of gene inactivation, maternal RNA effects, mitochondrial partition and other epigenetic phenomena that affect fetal development, sometimes profoundly”.

    That’s right MZ twin studies have generally observed epigenetic phenomena. Twin studies have shown small differences in MZ compared to DZ twins.

    http://www.nature.com/ng/journal/v41/n2/abs/ng.286.html

    and:

    http://www.pnas.org/content/102/30/10604.full

    Note that the comparisons were group comparisons (MZ vs DZ) and the studies did not segregate by chorion type in MZ twins. MZ twins were more alike than DZ twins for DNA-Methylation and X-inactivation. However, not all MZ twins showed skewed X-inactivation.

    Trevo et al (1994) did show the following with respect to X-inactivation patterns in female MZ twins segregated by chorion type:

    “We found a strong correlation between dichorionic fetal anatomy and differences in X chromosome inactivation patterns between members of an MZ twin pair. In contrast, all monochorionic twin pairs had closely correlated patterns of X chromosome inactivation”

    Epigenetics (environmental modifiers) would explain the differences in MZ/DC pairs, but not MZ/MC pairs who share the same prenatal environment.

    The citations mentioned are older studies and with good reason. There is not much interest in going beyond classical twin study design, it is significantly more expensive to retrieve and examine live birth records. The use of ultrasound and much more accurately defined live birth records have offered the possibility of doing this more comprehensive type of twin research, but it is still more costly and classical twin study design has taken on the reputation of being the ‘Gold Standard’ for twin studies.

    The CATS study is the first in ASD research to design the study to specifically control for chorion bias.

    I am in correspondance with other groups involved in ASD twin studies and Autism Speaks agrees with me as well, that this type of study would be very informative.

    At least the CATS study will have peliminary results in a few years and I eagerly anticipate their findings.

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