Springingtiger's Blog

Do We Allow Autism To Define Us?

I was looking at Twitter’s suggestions of whom I might like to follow, and was struck by how many of the short bios said things like, “stay at home mom of 3 kids, 1 on the spectrum” or “Aspie mother of an aspie son” or — in my case — “I am a Shiv devotee with Aspergers.”. I mention my Aspergers on my Facebook profile and on my WordPress bio too. One is inclined to wonder whether this is like walking up to people and saying, “How do you do, I am Autism”, If there were an “Autism Anonymous” would we be standing up and saying, “My name is Rory and I am autistic”? Although given how prominently we display our interest in autism, anonymous does not come into it!

Obviously for people on the Spectrum and for their parents and family autism is a primary concern, but sometimes I wonder if we allow it to obscure the whole of who we are. If we are on the Spectrum there is no way we cannot be autistic, it is a part of who we are like brown skin, red hair or blue eyes. The parents of autistic children may be so occupied with the upbringing of their ASD child that they have little time to think of other things.

I think sometimes we need to be reminded that we are much more than our autism. We have interests and abilities that are not given by autism — although our way of engaging with them may well be. Who we are is not only determined by our genetics but also by what we do, our relationships, our employment, our interests and hobbies. Rather than the statement, “I am autistic”, I think we should express ourselves more along the lines of, “I am an autistic person who …writes, runs, likes trains, loves dinosaurs, plays basketball, enters beauty pageants etc” because we are so much more than the label and each of our achievements should be celebrated. When we refuse to conform to society’s stereotype let’s make a noise about it. Autism is interesting, but we are interesting too, as people.

Sometimes as I read the blogs of parents with autistic children, I wonder if they need to be reminded of who they are. The dedication and commitment of these parents is admirable, but perhaps they should remember sometimes the person they were, of whom they have lost sight. It may not be realistic for them to hold the same goals as before their autistic child was born, but somewhere inside them the young person who dreamt of great things, is still alive. They, and the rest of us need to remember, that they are more than, “Autism Moms (or Dads)” — not a label that I like — they are people, fully rounded human beings. It is too easy to lose them behind the label and what we cannot see we forget. That your high school friend with the autistic child has heavy demands on his or her time now does not mean they are no longer the person whose company you once enjoyed. Neither should you think they don’t want to see you, they do, but they want you to be able to accept their child without judgement, if they haven’t been seeing you it may be not because they don’t want to see you, but because they don’t want to lose you. Some people are not able to cope with the presence of an autistic child, but many can, at least for a while. It is time that Autism Parents were presented to the world as three dimensional people, and it is time that society — instead of rendering them invisible — recognised them and embraced them. They were once your friends, once they enriched your life, what they can bring to you now is so very much more, more profound, than they could then. People with autism in their lives — like any other people — need people, they need people like you.

Whether Autistic or the parents of Autistics, we are not defined by Autism, we are people. If you take the trouble to get to know us you might like us, well some of us anyway!


3 Comments so far
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Excellent post, as usual.

Comment by Kim Wombles

I think I understand the kind of narrow self-definition you are referring to, and I agree – balance is important. I’m glad that more and more autistic adults and “autism parents” are injecting that reality into their social networking though – I mean, nobody can truly say everything about themselves in a sidebar bio, right? But we are constantly encouraged to self advocate, and to help spread autism awareness and acceptance, and I think that can be accomplished by making it a *part* of our self-defined public persona.

Comment by Annette Heidmann

[…] get to choose most of the labels we bear. Sometimes our labels define us as I said in my blog post, Do We Allow Autism to Define Us?. We have two sorts of problematical labels, those of which we are aware and those of which we are […]

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