Autism ~ I wouldn’t change it if I could

First, a little disclaimer. As always when it comes to the discussion of autism, this is my opinion based on my experience and I don’t expect everyone to agree. It’s becoming easier to talk about my experiences and feelings about autism but they are not always pleasant.

On several occasions I’ve come across parents of children on the Autistic Spectrum stating if they could cure their child tomorrow, they wouldn’t. I have to be honest. I don’t understand this at all. Maybe I’ve become jaded after sixteen years of caring for a special needs child and the prospect of continuing indefinitely, possibly for the rest of my life. If I could wave a magic wand and cure my son this minute, I would. I would do it in a fraction of a fraction of a half-heartbeat. I would do it with the knowledge he wouldn’t be the same in more ways than I can imagine now. Frankly, it’s  a sacrifice I would happily make.

I struggle every hour of every day, my entire family does. I’m terrified about the future and how I’ll cope with the endless attention my son requires. Sometimes I want to tear my hair out because of the constant noise. The verbal stimming -- repeated words, phrases and questions -- is relentless every moment he’s with me and gets so bad I can’t think straight. I hear his voice in my head on repeat even when he’s not around. Perhaps that’s the reason I relish silence so much and escape to the countryside when I can.

I’m one of the lucky ones. We have great services for now and my son is high functioning and extremely verbal. I’ve spoken about his achievements before, Special Olympics, his writing, his music and now he is a regular guest on local radio.  My son has so many more dreams for the future. I’m told with a lot of support some of these are achievable. I don’t want that for him. I don’t want limits other than the ones everyone has. Like any parent I don’t want my child to struggle. When I see him struggle, I want that thing that is in his way gone. For my son, that’s autism.

Before you go thinking that I’m an awful, selfish mother and it sounds like I’m having a moan, or this post is all about me. I believe if he could change, he would. ‘Why’ is a question always on his lips. He watches the world from behind the glass wall called autism. Most of the time he’s happy, other times he’s not. So yeah, I would break down that wall and bring him into the world. I don’t actually have a magic wand, so we’ll keep availing of treatments and hoping the world will adapt and see him as an individual human being with hopes, desires and talents instead of something weird to be stared at, or worse, laughed at.  

When I think of a cure, I wonder if there is some guilt involved for parents? Do some believe that by saying we would change our child, it means we don’t love them as they are. Does saying autism only occurs in families able to cope with the challenge give some comfort? Do we really believe special needs children arrive into the world as some test of faith? If so, is admitting we would change the child akin to admitting defeat?

At the same time we spend all our time changing the child but we call it helping them to adapt to the world around them. Some would say it’s because we can’t change the world to suit the child. In reality, if parents of an autistic child could change the world to suit the child, would we? Would we really give up on the prospect of a child hugging us, or playing with siblings, or hearing a chorus of happy birthdays. Would we really leave them be on their side of the glass?

I tend to believe autism stems from an unfortunate set of circumstances and is not a test of my strength as a person by some higher power. To me, autism is not a gift, it’s something debilitating and ugly. Although it seems contradictory, I love my child exactly as he is, but I would change him if I could. I would sacrifice some of the things that make him who he is for all the things he could be. Does that make me a bad parent? No, I don’t believe it does.