Monday, April 1, 2013

For those who do not have a child with autism, tomorrow is World Autism Day.
For the parents of the one in fifty children having been diagnosed with some form of autism, every day is filled with awareness. Every quirk, every tic, every misinterpretation, every stare of disapproval and every meeting with the school is another reminder that, in so many ways, I have a child unwelcome in this world. The good news is that, with time, there has come compassion...and things are changing for the better.
For a long time following Henry's diagnosis, I refused to watch or read any media at all encompassing the scope of autism. I obtained the information and resources required to help my son become successful, of course, but I lived autism. I didn't need to read autism. And, to be honest, the representations of autism were so simply foreign from my own experience that I could neither relate nor empathize.
You see, we have been told to think about autism in the context of a deficit model. Such a model, which focuses almost exclusively on impairments and limitations, ultimately leads us to see autistic individuals as broken people who are ill and, as my child’s first doctor explained, need to be fixed. Never - not for a moment - did I see my son as "impaired." I valued his neurological differences, his unique view of the world, his intellect and his subtle wit in the same way that I value other aspects of human diversity. He added a richness to our family in the same way that my husband and I have brought our respective cultures into the home.
This is not to diminish the challenges of living with autism, or parenting in the context of a world with a different set of expectations...but it is to say that autism is, in our mind, value-neutral. In fact, it has its gifts when properly contextualized. For example, Henry's difficulties in understanding social nuances, filtering competing sensory stimuli, and planning the tasks of daily living are coupled with strengths in detailed thinking, memory, and complex pattern analysis. It is a web of strengths and weaknesses, mirroring the experiences of most of us. Henry's situation is just a bit more polarized, with the strengths more prominent and the weaknesses more apparent.
Interestingly, not once was I advised after Henry's diagnosis to speak with a person having autism. There is a misalignment between the representation of autism in the public, through campaigns like those produced by Autism Speaks, and the objectives of those self-advocates in the autism community. I recognized, in time, that the portrayal of autism in the media leads to some dangerously false assumptions about the capabilities of autistics as a whole.
Instead of Autism Awareness, I would prefer a day of Neurodiversity Awareness, where we seek to promote the idea that brain based differences don't diminish the value of the person, and that behaviors we don't understand need not be met with anger or frustration but, rather, with openness and acceptance. Instead, tomorrow will be a day filled with cure-based rhetoric, terrifying statistics, and reporting entrenched in fear. I am not afraid of the future.
I will spend tomorrow celebrating my ninth anniversary, which brought me my beautiful little family, my son and daughter who hold my heart in their tiny fists, and the depth of experience we have been given. I'll celebrate the man I married, who never once suggested that we seek to "cure" or "treat" our son or his autism but, instead, looked at a doctor filled with despair and said, "I like my son as he is today. If this is how he is tomorrow, so be it."
And the truth, of course, is that the days since have been better than we ever imagined. Our son is smart and healthy. He does well in school and is a natural athlete. He's funny and kind, and loves his little sister. In so many ways, I relate to the parts of him that present as "autism," because they are traits we share. Human traits. We are both orderly and organized...we both have the ability to detach from situations and communicate facts without emotion or investment...we both have wicked tempers.
If you came to my door with the cure to autism today, I would turn you away. I wouldn't change a thing.