More Autism Research Funding Should Target Adults

By Liane Kupferberg Carter

Here’s the question lately that keeps me up nights: what happens to kids with autism when they’re  not cute and little anymore?

Most of the current funding into autism research and intervention is aimed at the youngest children.  But besides the obvious argument – that it is critical to intervene when they’re young because you get more bang for the buck  – it’s also a fact that it’s a lot easier to raise money for a disorder when you can  feature the face of an adorable toddler.

Most of the conferences I’ve attended and articles I’ve read  focus on autism as a childhood disorder.  The preponderance of  cognitive and emotional development studies look at children.  When they do focus on older children, it often seems the emphasis is skewed to children at the “higher” end of the spectrum.  As the parent of a moderately functioning teenager with autism, I’ve been wondering lately about the subtext behind all these studies and workshops. Is there an unspoken assumption that those at the more moderate or  lower functioning end of the spectrum aren’t worth it, that  they are just too far gone to help?

But if you accept the statistic that 1 in 150 children in this country have autism, we are looking at a staggering number of rapidly aging young adults who are going to require life long services and supports.  According to the Autism Society of America , in the next decade we can expect four million people to be diagnosed with autism.  All those young adults will be vying for the same woefully insufficient adult services. Yes, the state runs programs, but the waiting lists are long, and depend on the  vagaries of the state budget. Times are tough; dollars and resources scarce.

We need far more research and  financing directed at the programmatic needs of adults with autism.  That means better targeted studies looking at best practices, interventions and educational protocols for teens and young adults with autism.

We are facing an autism tsunami, and the first wave  is aging up and out of the school service model quickly. Once the structure and socialization of school ends, and that little yellow school bus stops coming to the door, it is completely up to each family to figure out what to do next.

It’s keeping a lot of us up nights.

 

Liane Kupferberg Carter is the captain of Team Scarsdale C.H.I.L.D., the nation’s top fund raising walk team for Autism Speaks. Her work has appeared in the New York Times syndication, Parents, Child, McCall’s, Cosmopolitan, Glamour, Newsday, and numerous literary journals. She is a 2009 Memoir Journal prize winner for “Love is Like This,” an essay on mothering a son with autism.  She is currently working on a memoir, Making Music Anyway: Raising a Child with Autism.

10 Replies to “More Autism Research Funding Should Target Adults”

  1. Liane,
    I have no doubt that you have articulated thoughts on the minds of many of us who have older children on the spectrum.
    Numerous levels of disability add to the maze that needs to be sorted, in order to support the developmentally disabled population that exists today.

  2. Because the “spectrum” has so recently expanded, many autistic adults who came of age prior to the 1990s are under-diagnosed or completely misdiagnosed (MR, borderline personality disorder, OCD, bipolar, etc.). As a result, some people actually believe there are no autistic adults out there. Autistic adults *are* out there, and they desperately need support and services.

  3. The issue how best to support adults across the autism spectrum grows more critical with each passing day. Beyond the lack of research the most pressing problems are a lack of funding, ineffective transition programs and interventions, and significantly diminished professional interest (Nobody, it seems, goes to college to work with adults with ASD. Young children? Certainly! Adults? No so much.) Yes these are huge challenges but they are not insurmountable if we believe that everyone has a right to a life of competence, dignity, and quality.

    1. Peter: That is a great point. Are there any college/university programs out there that provide training for people who want to work with adults with autism? –Alison Singer

    2. I agree with you Peter. As the mother of a 20 year old autistic son, I simply can not believe the lack of programs for him. Yes he has been deemed eligible for the Medicaid Waiver for a transitional program, but there is no funding so on the waiting list he goes for an unspecified amount of time…… In the meantime there is not any program he is eligible for that would not require all monies for this program up front. I also read today that now they are trying to “consolidate” diagnosis’s , completly remove some, stating this “would see a dramatic decrease in the autism epidemic”…My son is not an epidemic!..I guess the only thing I can do for him is encourage his independence, maintain his dignity ,quality of and self worth, and make sure he knows how much I love him.
      There needs to be MORE programs available to our adult autistic children!
      We have to continue the fight for everything that is a right to our children!
      UNITED WE STAND!!

    1. Here in the UK we have estimated autism rates of 1 in a 100. But that is for the whole spectrum. Although we are only just getting the hard epidemiological evidence to support this figure, the National Autistic Society has long argued that this is an accurate figure.

      We did this based on Wing and Gould’s seminal Camberwell study (Wing and Gould 1979) that found rates of 20 in 10000 for all autistic spectrum disorders amongst the special ed population (IQ less than 70) of a London borough and Gillberg’s Swedish study (Ehlers and Gillberg 1993) which found rates of 71 in 10000 for all autistic spectrum disorders in a mainstream school population (IQ greater than 70) in Stockholm.

      It is also noteworthy that when Wing and Gould applied Kanner’s criteria to their population study they only found rates of 4 in 10000. The higher figure of 20 in 10000 included all children with the triad of impairments that has been the basis of the diagnostic criteria since DSM-III(R) in 1987. Just changing the criteria produced a fivefold increase. Improving awareness and extending the diagnostic net to include mainstream pupils gives us another fivefold increase.

      What this means is that instead of an emerging crisis of provision for “rapidly aging young adults” (whatever that is supposed to mean) we have a situation were untold numbers of autistic adults from across the lifespan have struggled with unmet needs for years. Most of them do not require lifelong services and supports. They need accommodations to enable them to live and work in the community.

      Visit the NAS I Exist Campaign to see how we are tackling this issue in the UK.

      References:

      Ehlers, S. & Gillberg, C. (1993): The Epidemiology of Asperger syndrome. A total population study. Journal of Child Psychology and Psychiatry, 34 (8), pp. 1327-1350

      Wing, L. & Gould, J. (1979): Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism & Developmental Disorders, 9, pp. 11-29.

  4. My son Evan is profoundly deaf and austistic. He is now 24 years of age. What I know to be true is that adults with disabilities are not Valued. They are left to the system to sort things out. Their only worth is the dollar amount attached to their back. Can we all agree the system is broken?
    Now, how do we as families, caregivers, individuals, take control, manage the money, make it work?
    Do we know where to start?
    Easy enough to say that there should be in place more research, people willing and educated to work with adults with disbilities (autism included) better to just do it.
    An example is Fisher House a privately owned successful program that provides a wide array of services for wounded service men and women.
    We all agree that if you build it they will come and if collectively we can go to the H.E.L.P committee and state the case that WE CAN do it BETTER it should work.
    Now, where to start?
    Well, I know that College’s and Universitie’s have the ability to turn a classroom into a living classroom. Add housing-a walkable community- recreation and social programs- pay staff a living wage- develop an on site business that has the potential to be sustainable- require that families and individuals be accountable-
    This is the beginning.

  5. I would like to make you and others aware of The Daniel Jordan Fiddle Foundation, a national autism organization that since 2002 has been developing and awarding grants to residential, vocational, educational, recreational and family programs for adolescents and adults with ASD. Our specific mission has and continues to be developing and supporting through grants programs that honor the individuality of adults with ASD and advancing the proliferation of replicable models. We have seen the development of more and more programs geared to adults throughout the United States and are working on new endeavors including health and wellness models and entrepreneurial models for adults. We would welcome your support of our mission and encourage you to visit our website to learn more. We agree with your comments and realized over a decade ago the need to create community opportunities for adults on the spectrum and thus have been doing so ever since.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: