By Linda J. Walder
This is the jumping off point for today, written by filmmaker and writer Simon Fitzmaurice, “Society is predicated on the idea that we all have the same wants and needs. But that’s only when you reduce us to the same. What’s different about us is just as important.”
The other night, at a friend’s home for dinner, the question arose about autism. What is it? What are the “characteristics of a person ‘with’ autism?” My response, and quoting my friend and colleague Dr. Stephen Shore, “When you know one person with autism, you know one person with autism.”
The discussion then moved to neurodiversity, and my point that we are all different, and unique, and in my opinion, that is what makes the world fascinating and stimulating. “But isn’t it so sad,” said the hostess. “that many autistic people will not be able to live their lives experiencing and doing so many things we can?”Another guest answered, “but maybe they do not want to do those things you speak of and maybe it never even crossed their mind to do them.”
This has been what some view as the BIG problem with the “cure autism” mentality that others embrace. Those who espouse the view of autism as a “disease” that needs “curing” versus those who do not believe autism is an illness but rather, a manifestation of what has been called “different brains.” The response of many “cure” folks has been, “how cruel and unthoughtful are those who do not live with the sleepless nights and a nonverbal, frustrated and behaviorally challenged child to believe autism should NOT be cured?” “Have those who do not believe in ‘curing autism’ walked in my shoes?”, they proclaim.”
I have been thinking about both sides of this discussion for many years, first as a parent, and later as an advocate and not-for-profit leader in the autism community. The one consistent observation I have made is that this debate itself is really the crux of neurodiversity. If all opinions are based upon how a given individual processes their world of experiences, so too the notion of “curing” autism is based upon one’s experiences of autism.
Getting back to where I jumped off in the beginning, it seems to me that the duel between the individual and the society has and will always exist. Our laws, our organizations, our secular and religious institutions are all based upon preconceived ideas of right and wrong and how “things” should be and should not be done. There is an order in this that creates a sense of security that humans crave. But the truth is we all do not have the same wants and needs, and our compassionate souls might better take the lead, traveling in less secure places, and opening our minds to what seems difficult but is essentially very easy: acceptance. We do not want our children, or anyone else’s children, relatives, friends, or more to suffer, but should we define what is suffering for them? And do we even know for sure that they are suffering?
Autism For A Lifetime 