Sunday, March 28, 2010

Conflict within the Autism Community

President Obama has nominated Ari Ne'eman (pronounced AH-ree NAY-men) to the National Council on Disability, and in the process has inadvertently highlighted a split in the Autism advocacy community. Ne'eman is an interesting guy. He apparently has Asperger's disorder and is the Founding President of the Autistic Self-Advocacy Network (ASAN). They argue that autism is a form of "neurological diversity." By conceptualizing autism in this way, ASAN sees autism as a form of diversity, not an illness.

ASAN argues that the main focus on autism expenditures should be on providing supportive services and thus finding ways to include autistic persons in society. It shouldn't be on finding a cure. In contrast, the largest advocacy group on autism in the US, Autism Speaks, still sees autism as an illness that needs to be cured. They want to see an emphasis on research on causes and cures. The New York times just published an article on the controversy.

From my perspective, as a clinician who has worked with persons with autism, the controversy is overblown. The reality is this:

First, advocates of the neurological diversity hypotheses about autism should remember that the vast majority of mutations occurring in the natural environment are maladaptive. There is no reason to assume that all diversity is good and this is the case with autism. The social and economic costs of having a child with autism in the family are tremendous and we should not idealize autism. Families are disrupted. There are divorces, because parents are depressed and guilty about the child. Siblings often feel left out and lost in the family while parents devote most of their energies to the disabled child. Autism can be a terrible disability. We have found that early intervention does have a positive impact on autism, but we are still a long way from a cure.

Second, there is a wide range in the functioning of autistic persons. People like Ne'eman can function fairly well and be remarkably successful. However, they are the exception to the rule. Most autistic individuals are unable to function independently and--if they can work at all--can only do manual labor. While there is nothing wrong with manual labor, people with autism simply do not have the social skills to function adequately in those kinds of situations. I know. I work in an county that still has a lot of factories. A person who is "different," perhaps in appearance, ethnicity, or functioning, gets horrible harassment, especially if they don't have the social skills to stop it. A factory or construction site is not a place for people with autism. There are few jobs out there for them in the community.

Finally, our current commitment to housing and social resources for people with autism is pitiful. It takes years to be placed in supported housing in Pennsylvania. I assume it is the same in other states. Care providers in group homes are terribly underpaid and there is a tremendous turnover in employees. The greater the turnover, the less the experience of the average care provider, and the worse the care is.

Ultimately, given our limited resources, we have no choice but must divide them:
  • We need basic research to better understand the causes of autism, which we hope will lead to either a cure or prevention or both.
  • We need treatment research to improve our current assessment and treatment protocols.
  • We need more social services to provide more support so that we do not abandon persons with autism.
Obviously, I'm arguing that both sides are right and I don't apologize for that. Advocates of each side can deny the legitimacy of the other side. But in the long run, treating autism is an overwhelming task and no amount of denial will make it less overwhelming. Compared to the need, our resources are very limited. Is it hopeless? No, but solving the whole puzzle of autism will take much time and many more lives are going to be impacted by it before then.

There is a book of Jewish wisdom, entitled Pirke Avot, which is variously translated, "Ethics of the Fathers," or (more modernly), "Teachings of the Sages." One of my favorite teachings comes from Rabbi Tarphon, who said, "You are not required to finish the job, but neither are your free to abstain from it." He was talking about religious study, but his advice has also been interpreted as applying to doing good works. As a society, we need to live by that wisdom, especially as it applies to all forms of disability.


Jill Randolph said...
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London Counselling said...

Interesting look at both sides of the autism controversy. Knowing that autism exists as a spectrum, rather than in a singular form, makes both sides of the argument right at different times.