I did a google search on "autism does define me". And I was very surprised to see about half the articles stated that autism does define them and other half not. So forget the Internet in answering that question: you must answer that for yourselves.
So do I believe autism defines oneself?
I think about the person that defines themselves as shy. They may say "I'm a shy person". But they have only put a label on themselves, and notice the times they are shy because of the mental model they have created for themselves. But they don't think of or they discount the times they are not shy. You ask them "Are there times you are not shy?". And they will have to think and they will probably grin and say "Yes". So, they have destructively painted themselves with a 'shy' brush. Creating a mental model of yourself is far different than a genetic set of characteristics. (Now I'm not saying that there are not truly shy people, but these people are most likely overly shy because of some genetic reason and not because of any mental model they have formed).
I asked my autistic son if he feels his autism defines him and he answered that he doesn't know life any other way. Which is correct but it's also correct for anyone since we all have different traits.
So the question really is: does your genetic makeup define you? And, again, the answer is grey. Certainly, who you are is DNA-deep. But you may have red hair. Does having red hair define you? You may have a physical deformity. Does that deformity define you?
Thus, the answer must come down to how you define the word 'define'. And, sorry but once again, the answer is grey and personal. Having red hair is very different than having, for example, a birth defect of a cleft lip, or a very noticeable birthmark on your face. A person with red hair may say that this colour doesn't define them but a person with a cleft lip would say absolutely.
I think that a person will say whether a genetic characteristic defines them or not based on how this characteristic affects their integration into the mainstream world. Red hair has little effect, a cleft lip has much more. For example, ask someone with a cleft lip stuck on a desert island all their life whether their lip defines them would say of course not. Would an autistic person stranded on a desert island say their autism defines them?
I have written 7 paragraphs and said nothing. Sigh.
So to finally answer my own question: My grey opinion is that autism does define oneself. It is present in every action they do. It is a part of how they see their world whether they are integrating themselves in the mainstream world or on their own.
And I read this article (which started this whole thought process) and I feel that even though she was writing it with the best intentions, I feel it badly misses the mark. Others may have a different view.
dont-let-autism-be-only-thing-defines-you
Her overall premise is that you somehow must overcome your autistic worldview in order to succeed in the neurotypical world. And this has the affect of subtlety reinforcing a view that the autistic are somehow tainted or not 'right' or incomplete. She writes:
I tell them that they have to believe in themselves. They have to believe they CAN
And I ask myself: What happens if they don't know how to? What happens if they have never tried or failed each time they have? How does a 'belief' come about when there may be nothing to support that belief. And what does 'believing in themselves' mean?
To me it's so blue-sky and hand-wavy to say these things. The devil is in the details.
She comes at the article from the position of being a very high-functioning autistic. It would be like asking Steve Jobs what should the autistic should do. He would probably write exactly what she has written because his personality and autism worked perfectly in unison. His combination was the ideal outcome of autism.
You will have to run a marathon daily to keep up in a neurotypical world. You will have to work harder than your co-workers. You will have to be willing to ask for help. You have to be aware of your needs and you have to be patient with yourself. You have to go that extra mile.
This is the message I dislike the most. It is telling the autistic that not only must they try to think/behave like the neurotypicals but you must strive to be better than them. In fact, this statement is very dangerous. It completely invalidates their autistic world. It is saying that the autistic world is not a valid world and the goal is the neurotypical world. It is the exact opposite of when she said believe in yourself. I think of the stress that these types of messages put on the autistic children and then she writes:
I look for those kids who doubt their future. I see the fear in their eyes and the wonder if they will ever make it independently.
Well, of course they do. You are giving them a monumental task. Be better than the neurotypicals at being neurotypical.
She is forgetting that the devil is in the details. It's the details that determines your path in life. You can have all the hand-wavy quotes but, at the end of the day, it's knowing that actions are the only thing that can make you believe in yourself.
And I have a different message. I believe the autistic person should use their autism as a springboard into the neurotypical world. Be yourself within any world. Be yourself first.
