An open letter to the Committee on Oversight & Government Reform

23 Nov

Dear Committee on Oversight & Government Reform,

I write to you in regards to your upcoming autism hearing. Much has happened in the decade since the Committee last met on autism.

“1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism”

We need to shift from seeing autism as primarily a discussion of children to being focused on the entire population. We need to shift from being primarily focused on viewing autism as primarily an epidemiological topic to focusing on improving the lives of our citizens. There are over three million American autistics. Improving the lives of autistics should be a top priority.

Consider this simple paragraph, the description of the hearing:

“The hearing will address the federal response to the recent rise in Autism Spectrum Disorders diagnoses, as well as the allocation of government resources for ASD. The hearing will also review research and treatment options for those diagnosed with ASDs.”

Research and treatment options are after allocation of government resources for ASD, as though these are an afterthought.

Now, consider this simple rewrite:-

“The hearing will address the federal response to the recent rise in Autism Spectrum Disorders diagnoses, as well as research and treatment options for those diagnosed with ASDs. The hearing will also review the allocation of government resources for ASD.”

This sends the message that research and treatment are high enough priorities to include in a discussion of allocation of resources.

Much has been learned since the Committee last met to discuss autism. We know that much of the rise in autism prevalence estimates is due to social factors including changes in how autism is recognized. And we know we aren’t finished quantifying social factors involved in the increase. The question of whether the true incidence of autism is really rising remains open. But there is not a question of whether autistics in previous generations were missed. The question is how many were missed. Further, we know that the characteristics of the autism population are much different than previously thought. The recent CDC estimate of 1 in 88 included the result that the majority identified did not have intellectual disability.

The autism population is larger and a broader spectrum than thought even the short time ago when Pub. Law No. 109-416 (the CAA) was enacted. The government response needs to be broader in response. Greater resources are needed to adequately address the role the government is taking in autism.

An example of an opportunity this new understanding presents is in employment. A study from the UK showed that not only is the adult prevalence about 1%, but that many of these adults are living alone and are un- or under-employed. Another way to look at that is that a large fraction of the un- and under-employed are likely autistic. With an understanding of what supports are needed in the workplace and how to effectively transition from education to employment, we could make a big impact on unemployment.

Appropriate education for autistics can be more expensive than education for non-autistic students. As more children are correctly diagnosed and appropriately served, special education costs rise. The federal government has never lived up to its commitment to fund 40% of special education costs. President Obama promised to make good on this promise while campaigning four years ago. We are still waiting.

I note that the witnesses for this hearing do not include someone from the department of education nor anyone with a primary focus on education.

Autistic children become autistic adults. Today’s autistic adults are largely undiagnosed and unstudied. This is true for those adults with Asperger syndrome as well as those with intellectual disability. We don’t know what supports in living condition, tertiary education or working conditions are most appropriate for autistics. We know there are co-occurring conditions such as epilepsy and intellectual disability with autism, but we don’t know what sort of medical conditions might be more common or have early onset in adult and aging autistics. The title of a study out today drives this home: “Into the unknown: aging with autism spectrum disorders.” We just don’t know the specifics of this population while they age.

The needs of autistics with multiple disabilities are as high as ever.  Often the autism spectrum is presented as having one dimension, with the level of intellectual disability defining one’s place on the spectrum. This approach is far too simplistic and ignores the great variation in other measures. For example, just within the population with autism and intellectual disability there is great variation of the unique needs and strengths.  Unfortunately all too often schools lump autistic children into categories based on intellectual ability rather than needs. We are not giving our educators and our students the tools they need.

“Success” in autism treatment and education is frequently defined as achieving some level of non-autisticness. Of becoming “indistinguishable from peers”. However, what may be considered a small advance by this measure could be huge for an autistic with intellectual disability.  About 5% of autistics are non verbal and a larger fraction are non conversational. A recent review found fewer than 200 examples in the published literature of non-verbal autistics learning to speak past age five. And yet the same team has shown that it is possible to teach verbal communication to older autistics. Since the last autism hearing by the Committee advances in portable technology have led to a boom in augmentative and alternative communication (AAC). Giving a non verbal or minimally verbal individual a more effective means of communication may be small by some measures of success but can be life changing for the individual. To paraphrase on autistic writer: self-advocacy begins with “no”. A single word, spoken or presented through AAC, is a giant leap for some.

The federal response to autism includes congress. 2011 was a year where congress was accused many times of “kicking the can down the road”. Such was the case with autism. Pub. Law No. 109-416 was reenacted at the last minute and for a short time. I am grateful that it was reenacted but autism efforts are long term. Even organizations which criticize the government’s efforts as accomplishing too little over the short term, organizations which promote the idea that answers to tough autism are straightforward, even they are calling for a permanent federal autism infrastructure. Congress needs to accept a long term commitment.

Autism presents a much more broad and long-term topic than the Committee attempted to address a decade ago. It is a more broad and long-term topic than many try to present today. The federal response to autism has been significant and serious but it needs to expand to address the real and serious needs of the autism communities.

Respectfully submitted,

Matthew J. Carey, Ph.D.
San Jose, California

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4 Responses to “An open letter to the Committee on Oversight & Government Reform”

  1. stanley seigler November 23, 2012 at 18:40 #

    THANKS. this has been forwaded…

  2. elias September 24, 2013 at 08:47 #

    hello just want to comment about the above letter the letter is too vague.

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  1. An open letter to the Committee on Oversight & Government Reform - November 23, 2012

    [...] Read more at Left Brain Right Brain. [...]

  2. An open letter to the Committee on Oversight & Government Reform | flathouses.co.uk - November 23, 2012

    [...] Read the full post on the original site [...]

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