I am a reader and fastidious researcher. I have stayed up researching all night long sometimes just for fun. I like it. I tend to dive into researching and when my son was at four years of age diagnosed with autism I was a researcher on a mission. I went at it in a multi-layered way. I read medical journals, joined Aspies for Freedom forum, went to conferences, and read books and combed search engines for any information. It has taken me years to gather and understand what is autism and how to think about "autism" and what that means with my son now. He keeps growing and changing and showing me more things that are so much more than a one word label for who he is. Many of the things I see him do few other people ever see. You can't ever assume you know what is going between another person's ears. No one can say I am an expert in autism and objectively say they understand autism in all it's shapes and forms. Austism continues to blow me away with all its many facets and nuances.
I myself had been labeled as learning disabled so I came from a first person narrative of what it is to be labeled with a negative tittle. Dyslexia was something I knew I had but not something I really suffered from like a disease or condition. Like being left handed it just meant I had to adjust and find an alternative ways to get from point A to point B. I knew teachers didn't know what to do with me. I knew I did not test well. I knew I frustrated them and they did not think I could read and comprehend what I read. I had a hard time showing them on paper what I knew as a child. I also knew I could read and loved the written word and had a almost photographic memory of what I saw and heard. I just could not remember how to spell. I knew what the educational system thought of me was not even close to a reflection of what was going on between my ears at a very early age. I learned early that people who are supposedly experts in education are very limited in their understand of how we learn. No one can see what is happening cognitively in another persons head and meta cognitively we are all very different. Not only are our brains different chemically but we all learn differently too. I grew up in a time when educators didn't know much about different kinds of learners or differentiated learning /multiple intelligence and I was just ignored and dismissed. I knew they couldn't see me and that change my perception of the experts being capable. When my son was given a diagnosis of Autism by a developmental psychiatrist I didn't feel like that was a horrible thing. I never thought of myself as disabled and it never occurred to me to think of my son as anything but who he was, and still is, a beautiful boy.
Through the years this philosophy of seeing my son as differently abled has taken me to some very interesting places. Sometimes I have left quickly and walked away because the table isn't ready for us or even the more hurtful we are not wanted at the table. More and more I find we are happier and more fulfilled at our own table creating our own happy and doing our own thing.
Actress Mayim Bialik (who plays Amy Farrah-Fowler on TBBT) was being interviewed by Neil DeGrasse Tyson when he asked her about the speculation of Sheldon's label. She gave a response that Radio Times lauded as “Brilliant”. She said,
“All of our characters are in theory on the neuropsychiatric spectrum, I would say, Sheldon often gets talked about in terms of Asperger’s or OCD. He has a thing with germs, he has a thing with numbers, he’s got a lot of that precision that we see in OCD. There’s a lot of interesting features to all of our characters that make them technically unconventional socially…
I think what’s interesting and kind of sweet and what should not be lost on people is we don’t pathologise our characters. We don’t talk about medicating them or even really changing them.
And I think that’s what’s interesting for those of us who are unconventional people or who know and love people who are on any sort of spectrum, we often find ways to work around that. It doesn’t always need to be solved and medicated and labelled.
And what we’re trying to show with our show is that this is a group of people who likely were teased, mocked, told that they will never be appreciated or loved, and we have a group of people who have successful careers, active social lives (that involve things like Dungeons and Dragons and video games), but they also have relationships, and that’s a fulfilling and satisfying life.”
It is one thing to see yourself as whole and well. It's is harder to get the world to treat you as being whole and well. Life isn't a carefully constructed TV show with a safe set and actors who are not on the spectrum acting like they are. I love the perspective. Life, camera, action in the neuro typical world isn't choreographed for such a seamless existence. Label or no label I and my son are different. Our learning styles, our sensitivity and our perspective makes us different not broken. Part of the journey for any human is survival, pursuing happiness and self improvement. So basic needs and desires are the same for us as they are for anyone. While my son learns to live with his shape and shade of personhood and adjust to life in all it's rapidly changing incarnations he will have to come to his own terms and identity as to what his life with autism on side will look like for him. It is my job to support, encourage and hand him more paints and brush if he looses his way. He gets to paint the picture and it can and will be anything he chooses to create.