This guest post is from my dear friend Scott LeRette. Scott has a son on the autism spectrum and also has an award winning autism blog at http://austintistic.blogspot.com.
I received a phone call last year that made a very powerful impact on me, challenging the way I thought of autism and life with my son, Austin. The phone call was from Temple Grandin and she confirmed for me some of the thoughts floating around my brain regarding neuro-diversity, a cure, recovery (whatever that is), autism and all it stands for.
My take on neuro-diversity is essentially that one whom is autistic is not made wrong or right, but in my words, just different. Like my son, I have felt that he has all the pieces and parts of a typical person albeit assembled a bit different than you or me.
An analogy I like tos hare goes something like this...For you or me we reach for the cold water and we get cold. We then reach for the hot water and we get hot. But for Austin, he reaches for the cold and gets hot and vice versa. He gets the cold and hot water just like you or I but in this case the way it si received, processed, and transmitted comes out in a different fashion. Not right or wrong, but again, just different.
Since that phone call I continued to battle with myself over how I felt about my son, should and would there be a cure and what it all meant...would I give him "the cure"? I later read that Miss Grandin herself has said on numerous occasions that if there was a pill available today that would cure autism, she would not take it.
So from then on I felt good knowing that someone as respected as Miss Grandin felt the way I was leaning...I am right! At least for me I guess.
Over the following months my resolve for all this thought was tested. Only a few times would I hear, read or watch of something promoting and offering hope for a "cure" for autism. But I stood firm knowing that I believed there is nothing wrong with my son!
And then an old friend handed me a newspaper article he thought would be of interest to me. It is a short article written in the May 27th issue of the Des Moines Register. The sentiment I will share from the article is this: Three fathers whom were aslo researchers at different prestigious institutions across the country all learned their young boys were autistic. They then went on to totally change the scope of their research to ultimately find a "cure" for autism. They spoke of the devastation and grief they all experienced after the initial diagnosis.
I remember the day we finally had "the" diagnosis. I was already in full-blown denial, but over time realized the need to get help, services and attention was paramount. So I understand these gentleman's desires to, especially as clinical researchers, fix their kids. Does Autism need to be fixed? Am I wrong? Maybe these guys are right and a small bit of my denial persists.
I thought back to a few things my son has said to me..."Dad, maybe it would be better for you if I went away so you and mom and Logan would have it easier." And, "Dad, just have God please take this devil out of my brain, thank you and your welcome. Autism sucks." These are two moments that followed major meltdowns, in the cool-downs tage. I had no words to match his, but only hugs. What could you say?
So now I struggle. What if there was a pill? what if he could take it and it was all gone? What would change? Would he still hug me like he does? He still occasionally likes to hold my hand. I know he's 17 (so what) but would he not do that anymore? Would he still love movie and music trivia? Would he still love rance dressing and have the hysterical sense of humor that he has? Would he still have the unabashed ability to not think about what others think of who he is, how he dressed or what comes out of his mouth...only being himself? Would he still be Austin?
Would he still be Austin?....I don't know.
P.S- As I set here and write these words, Austin plops down in the chair beside me and says this, "Man, did God play a joke on me for this autism crap. Really, I mean, come on. Why don't we do a do-over and pull me outta mom as anormal kid?" Ugh, I hate that word. But maybe as he matures many of his thoughts and obstacles will all come to the surface and he will face them head on. And then he can decide what stays or goes and if he wants to take that pill some day. Maybe.