Autism Speaks, one of the foremost autism advocacy organizations, has recently announced that John Elder Robison, the author of “Look Me in the Eye”, a memoir about growing up with un-diagnosed Asperger Syndrome and a very eloquent advocate for the field of autism, has just been invited to be on their scientific advisory board. Now, that may sound like a logical choice, but it is a significant reaching out and healing of wounds within the field.
In September, 2009, Autism Speaks put out a video that anthropomorphized, some say demonized, autism as a scary thing that is to be beaten… and it polarized the field.
The field is split between those who say that autism IS their child and that autism is something that HAPPENS to their child. One sees autism as disease, the other as individual difference. One sees autism as something to be fought against, the other as autism as something to be accepted and dealt with.
It reminds me so much of the arguments in my “other” field of study- the field of gifted education. Gifted education has been split for decades between the “Nature/nurture” argument- is high ability something you’re BORN with, or something that can be DEVELOPED?
Both fields are dealing with very different perspectives- giftedness is a desired trait; autism, much less so. But they both have, at their heart, the same question- is this something you’re BORN with that is an innate aspect of yourself, or something that happens from outside sources that can be manipulated? Is “this”, whether high ability or autism, something that is to be worked with, or something that can be created or stamped out by outside forces? How much can we control, as people with autism or giftedness, families with children who are gifted/autistic, and teachers working with diverse children?
Deafness has been grappling with this for decades. Deaf (capital D) people believe that deafness is not a “Dis”ability, but rather a unique way of being that should be appreciated and maintained as a culture unto itself. People who are deaf (little d) often seek out ways to ameliorate deafness, often with technology such as cochlear implants. The arguments on both sides are very passionate. Do you cure deafness or work with it? Is it a disability or a misunderstood culture?
And the answer is important! If government and schools believe that giftedness is something you’re born with, then they feel free to cut funding because “they’ll make it on their own”. If insurance agencies and schools believe that autism is something you’re born with, they won’t fund “cures” or “treatments”. In both cases, if the environment can’t affect the outcome, then funding and research is unnecessary. It becomes something you deal with, you educate, you make the best of. There isn’t a lot of funding to stop Down’s Syndrome- it’s something a child is born with. There IS movement to promote the independence and acceptance of persons with intellectual and developmental delays. There is a WONDERFUL movement right now through Special Olympics- Spread the Word to End the Word. (You know the word- the “r” word.) But movement to end mental retardation? Not so much…
I got to attend a lecture once that Dr. Bob Plomin, a leader in “twin studies” gave. In his lecture, he discussed the “nature of the nurture”- or how because of inherited differences, the environment can affect separate individuals differently. It’s why you are very much like, and yet very different from your brother. It’s why your parents DID treat you differently than they did your brother. The same environmental stimuli will have different effects on different children. But the effects are not due only to the inherited issue, OR the environmental stimuli, but the interaction of the two. It means that if there is no environmental issue, there is no effect. BUT if there is no genetic component, there is no effect, either.
This is the way I see it:
- Three children. Two with genetic factors that have a pre-disposition to autism- we’ll call it Genetic X. We’ll name them SarahX and SamX
- One without- we’ll name that child, Sean-x.
- Two children, SarahX, and Sean-x are exposed to something in the environment- say, high concentrations of mercury in the soil and air, or in large amounts of plastic.
- Samx lives somewhere where the concentration is not as prevalent.
- Of the 3 children, SarahX is the ONLY one to develop autism.
- SamX passes his genes on down to his children. He does not have autism, but they might, if they become exposed to something in the environment. Sean-x does not have autism , and his children probably won’t either… unless, of course, he marries SarahX.
Given this scenario, there are three inter-connected lines of research:
- What are the genetic factors that lead to a predisposition of autism?
- What are the environmental factors that activate autism and make it worse, and
- What are the environmental factors/treatments that help autism get better?
And one REALLY activistic movement to expand the general public’s notion of “acceptable differences”.
All of these take time, and lots and lots and lots of money to find out answers. Autism Speaks has only been around for five years. For some parents, that is longer than their child has been alive and they need answers NOW. Help NOW. Treatments NOW. They are caught in the activism of crisis. But money funds knowledge and both of them take a very long time to respond to needs. Activism now can help find money soon, for knowledge later.
As Jess from Diary of a Mom said in her eloquent post, we’re “family”- all of us affected by autism are family. Infighting creates “camps” which alienates so many people. Critically, infighting within the autism community leads to a lack of direction and a lack of coherence- which leads to a lack of resources, which leads to a lack of knowledge.
Discussion? Discussion is good. Discussion as to how to seek a direction. Discussion about how to address all three of the intertwined questions- because focusing on one without the others leads to inadequte answers. By all means, lets’s have a family discussion!
John Elder Robison, I’m glad that you joined the conversation. I hope that Autism Speaks listens. Let’s push in the same direction to find answers.