It’s one of those perennial questions in the world of autism: if a cure for autism was made available, would you take it, or if you are the parent of a child with autism, would you choose it for your child?
The idea that autism is not a disability, but a different way of seeing the world is one that has been gaining momentum for a while now. Autism is so tightly bound up with personality, the idea goes, then if you remove the autism the person will fundamentally change. It’s a concept I struggle with. I see parents saying that they would not choose to cure their children’s autism given the option, and I feel myself floundering because I always thought that if I was offered the choice I would snap it up in a heartbeat.
Perhaps it’s because Wee Girl is pre-verbal, and the effect of her autism on her personality is not obvious, so I’m simply not aware of how autism is shaping the person she is becoming. Without speech, it’s hard for her to share her world with me. I know her eyesight is good — she can spot a chocolate wrapper at a hundred yards, but other than that it’s immensely hard to understand the way she sees the world.
For me, autism is the the barrier between Wee Girl and speech, and if removing it will mean that she starts talking, if it means that her life will just be that fraction easier, then of course I would choose to cure it. Of course.
Only it’s not really my decision to make.
Did you see Channel 4’s The Autistic Gardener when if was on? If not, try to catch it if you can. It was interesting and sweet and funny all at once, a typical gardening show, only the gardeners all have autism and it pokes fun at the inevitable created jeopardy these gardening and interior design programs indulge in. It was fronted by the appropriately named Alan Gardner, who has won awards for his gardens at the Chelsea Flower Show. He also has autism, and uses his ability to see the world differently in his work.
By turns, it was a delightful and difficult watch. Learning that only one of the trainee gardeners was living independently was a painful moment for me, as this is something that worries me a great deal when it comes to Wee Girl.
Perhaps if it is picked up for a second series (and it should be), the team could create gardens for children or less able individuals with autism. The moments when the trainees met with the neurotypical house owners were amusing at times, but I’m sure there are many many people with autism out there who would appreciate a garden makeover. I know in our case having a garden designed especially for my daughter, with play equipment designed for her sensory needs, would go a long way to improving our quality of life.
But I digress. The question was whether I would choose a cure for my daughter if one was available. While my first instinct would be an immediate and unequivical YES, thinking about it more closely I’m now not so sure. Not knowing how her autism has shaped her, or whether she would choose to cure herself when she is older, means this isn’t a decision I think I can make.
I am not sure that I believe, as many do about themselves or their own children, that her personality is so intrinsically entwined with her autism that the two cannot be separated, but then again, I don’t know. And until she starts talking she won’t be able to tell me. Perhaps Wee Girl will have something special to offer the world. Perhaps her autism will be part of that. I do hope so.
But even so if the offer came up and it was a one time deal never to be repeated, I honestly do not know what my answer would be.
What do you think your decision would be? If you have autism or have a child with autism, do you feel that their autism is bound up with their personality or not? All thoughts and comments are much appreciated.