Nov 8, 2011

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.


  1. Carol, your honesty continues to move and inspire me. This was beautifully written. No judgment here. Every parent should want those things for their children.



  2. I'm so glad you have this outlet to express yourself freely and reflect on life with your son.

    It always sounds like you strive to give your son as many opportunities as possible, and that makes you an extraordinary parent. :)

  3. Thanks ladies. :-) I was talking to my brother about it. I feel for parents coming through the diagnosis process and trying to come to terms. I know I wish there had been people telling me it was okay to hate the autism, that it didn't mean I was doing my son a dis-service or being weak. Letting parents know there are others struggling can help as much as talking about achievements.

  4. What a touching post. I understand what you're trying to say and I don't think there's anything at all wrong with you wanting a cure for your son if you could give it to him.

    My son has also been diagnosed with autism and I'm one of those parents who say they wouldn't change him if I could.

    I am extraordinarily lucky. My son (8) is also extremely high-functioning and verbal. His long-term prognosis is good. But some of the things I love most about him would disappear if I had that magic wand. His incredible memory, his hunger for knowledge, his sense of humor and his innocent, matter-of-fact way of dealing with the world are so endearing, I can't imagine him any other way.

    We have our struggles, of course. And if you were to ask me mid-meltdown if I'd change him you might get a different answer.

    1. I must ask what was your son like coming up to 3. Its just my son is 2 and 7 months and he regressed at about 18 months when he was saying he odd word. Recently he has started to bable a lot, so I am very much hoping that he will be talking very soon. Was this the case for your son?

      I am a dad, one of the reasons I wanted a son was so I can take him to football matches (soccer to my american friends). I just need to know if your son was a late talker and is he able to go to big arena's/stadiums without it distressing him too much?

      I am very worried and can't help but think that he won't live a normal life. This has also put a massive strain on my marriage but again I am worried that although my happiness is at a all time low I don't want to distress my son by having to only see him once ever week or so.

      I am extremely panicky at the moment and just after a bit of advise.

      Thanks for your time chris - UK

    2. Hi Chris,

      I wasn't sure if your question was for me or Vicki?

      It's heartbreaking to watch a regression, to see your child essentially lose words and abilities. For now, you are still early days and I image still working through accepting what is happening.

      It seems your son is making attempts to communicate and 2 years and 7 months is still quite young. There is every possibility your son will be verbal. My son had words, lost them, and then be became very verbal. lol

      Your question about soccer, Eric has sensory issues with his hearing. A lot of the time his verbal stimming comes from an inability to process noises around him, he is essentially blocking out sound by being loud himself. Now, having said that, he loves concerts, shows, loud cinemas, discos, and football. Eric is an Arsenal fan. For us, this came over a long period of time, teaching him how to manage these settings and desensitizing him to certain settings. Things like the cinema took a long time, but now he absolutely loves it. We went to Batman last night in a cinema with hundreds of other patrons whooping and cheering, the show was loud to say the least. However he loved it.

      This is specific to my son, your son could be completely different. He could have no sensory overload with loud noise and crowds or it could be severe. Even if it's severe, it doesn't mean the soccer games won't happen. There could be work involved to get him to that point. I can tell you, the work is worth it in the end.

      As for a normal life. I'm not even sure anyone has normal. Everyone has issues of some sort to deal with. It's very early to make any kind of judgement along that lines. When I look at how far treatment has come in the last ten years, I'm amazed. The kids coming up now have every advantage when it comes to possibility of what they can achieve. Yes, I still would change it but I also know it's really not the end of the world. It's terrifying in the beginning, and confusing. Like that instant when you miss a step on a stair and for a split second don't know if your foot will land safely of if you'll topple forward. Your heart is in your mouth all the time. Sadly there are no guarantees, only possibilities.

      Autism puts a strain on most relationships. You and your wife are not alone there. There is a special kind of strength needed to cope with any special needs child in the family. There's the saying that you don't know how strong you are until you have no other choice. Do you have someone to talk to? Does your wife? A network of support, both together and separately could help you both a great deal, speaking to other people who have been exactly where you are, but also people who can help you figure out how you can help your son become the best he can be.

      If you want to email me privately, there is a direct email to the top right of the page. I might be able to help put you and your wife in touch with some people who have been through this and are going through it, and can offer support without judgement and a safe place to talk to others.