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Sunday, May 22, 2011

Normal? No Thanks.

When we try to push our autistic kids into 'normal' or NT behaviours, what does that really mean? After all there's plenty of NT kids and adults I don't want my children to imitate. Rude, aggressive, selfish, entitled, arrogant and smarmy, Ive met them all in kids as young as 6. Yes to manners, and yes to impulse control, and focus skills, and even shared attention, some non forced eye contact and social awareness. But using 'normal' as the benchmark when it can encapsulate attention seeking or neuroticism or manipulation or extreme extroversion leads me question some of the fundamental aspects of focus in behavioural therapies.

Now don't get me wrong. I'm not subscribing to the extreme position in the neurodivesity movement that says therapies for people with Autism are wrong because they do not accept the person as is. Actually I find that to be an appalling approach. I mean NT kids get sent to school to learn the things they will need to one day hopefully gain employment and live independently. Why on earth would I deprive my childen of the same opportunites? As I see it, the therapy my son is doing now is preparing him for school and life beyond and it would be neglectful of me not to do so.

I also understand the value of children learning to make some eye contact even if minimal, to learn how to interact with others. I know the best chance our kids have of forming a friendship or two is by learning some social graces. I have no problem with any of these life skills being taught. But when the main goal of therapy becomes making my child 'indistinguishable', I wonder what type of normal the people who say that have in mind?

 I also wonder if the push for normalcy is motivated by a historical legacy of fear of difference. The psychology perspective tends to look at identifying and treating mental illness and it's also the profession that has gained the most traction within the ASD treatment sphere. While this is understandable since Autism is a behavioural diagnosis, I think it's time to change some of the pathologising narratives. It's quite possible to do so, as social work ( a profession I was once part of ) does this well. Acknowledging the challenges that come with any diagnosis yet looking at the individual in context and the multitude of variables that affect outcomes for people rather than seeing the person as a diagnosis to be fixed, full stop.

I don't care if people can tell my kids are different. Deal with it people. I am hoping I can convince them not to care either. I know when my son gets older he will have the cognitive awareness to work out he isnt like the rest of the kids in his class. But what I also want him, and my daughter, to know is that all their classmates have their fair share of issues too. There'll be the kid who is overweight, the boy who cant play sport, the kid that cant keep up with the rest academically, the kid who acts out in class because he lives with violence at home, the kid that is always coming to school late and without lunch. You dont have to have Autism to struggle to make friends, to be picked on, to be different. Essentially we are all unique and quirky, just some more than others. And often the more 'normal' the person the more dull in my experience. I want my kids to know that not being normal is cool, and they are loved and accepted for who they are. This means not expecting 'normal' or indistinguishable' from them. That is an unfair expectation and I wont be party to it.


  1. Amen. I'm all for getting my son to learn social skills and everything else but I still want him to be "him." Thank you for a great post.

  2. Brava, Sharon! Your son is most fortunate to have you giving him a balanced view of life.

  3. I couldn't agree more. I remember the first time I heard about some of Wylie's classmates, who were graduating, being described as "indistinguishable" among their peers. I turned to Wylie and said "Oh, please don't ever be indistinguishable!" It was a little laughable. In what other context would people find that a positive thing? That's just what I wanna be when I grow up, indistinguishable among the crowd! Haha.

    I just totally agree. Luckily, I think the "not caring what other people think" gene is pretty strong in my family. I'm pretty optimistic about my little man overcoming the challenges that come with being different.

    I have a feeling you and your family have the strength and wisdom to give your little boy the skills as well as the confidence to be a happy guy with a lot of character! I'm telling ya, destined for greatness.

  4. That was very well said. I think "normal" is mostly about making other people feel comfortable, anyway. If they're uncomfortable because of some harmless difference between your child and their expectations, maybe it's their expectations that need to be adjusted.

  5. What a great viewpoint. I have a 9 year old son who has never had a diagnosis, too borderline, and therefore has not had much in the way of intervention apart from years of speech therapy. He stims constantly, and when he was younger this went unnoticed at school, but I worry that he will be ostracised for it as time goes by. Paediatricians have told me to discipline him for his behaviour, but I feel it is part of some release valve for him, and as anxiety is already an issue for him denying him this would be detrimental. My question to you is, do you feel a diagnosis is useful, do you feel that access to services is worth the effort? We would probably have to see a new paed to go down that path.

  6. Awesome post.

    I had the same concerns when we attended ABA with our son - I liked that they were teaching him skills of sharing, being able to follow instructions, do an activity for an extended period of time and generally to step outside of his comfort zone. But their efforts to stomp out his stims left him anxious and miserable and pushed him further away from achieving those other skills (particularly since he principally stims when he's happy, and they were affectively stopping his expression of happiness.) They also tried to pull him away from his passions since he obsessed over them - they refused to let him play with their trains and trucks, even for a little while. When efforts to make a child "normal" pushes them further into their shell and ultimately makes them more anxious and miserable (not just in the short-term), there's something wrong and counter-productive there.

    I should add that I realise our experience with ABA might not be the usual (?), but it does generally match what I've heard from others too. My comment applies more generally anyway to any efforts to "normalise" an autistic child - such as it being important to work with their passions and around their stims.

  7. A & O there does seem to be an aim of 'indistinguishable' as a hallmark of success across many ABA providers. I do think this comes from a Psychology paradigm of pathology versus normal, with little room for grey. And certainly little celebration of difference. I think the Neurodiversity movement is slowly having an impact on this thinking. Halleluja!

  8. I like this post.

    One thing that can be a problem with therapy is that it may be hard for kids to understand the purpose. Attempts to teach me social skills as a child left me with feelings of inadequacy and anger. No one ever took the time to explain to me on my level of understanding that it was OK being like I was, and that these skills was just something I would be able to use to my benefit. I felt that I had to change, that I lacked something.

    So if the purpose of therapy is to make kids indistinguishable or to change them to become or act more 'normal', then yes, there is harm being done.

  9. Cecile thanks so much for your comment. It means a lot to hear from someone who has been on the receieving end of therapy. You have given me validation for the perspective I have chosen for my son. Thankyou again, youve made my day.

  10. Sharon, at the risk of 'unmaking' your day, I have to explain that I received no formal therapy as a young child. I was not diagnosed as a child, but there were people trying to help me as I obviously did not cope in many many situations. In later years I sought therapy for myself, and then experienced the same anger and upset as I did as a child. Thinking back I realise people wanted to help. But it made me feel horrible inside. And I experienced the same feelings later on when therapy implied that I had problems that needed to be fixed.

    I had only one therapist that had the opposite effect on me. I felt accepted and liked, and we did not even have goals or worked on problems - and those few months were invaluable.

    You have activated a whole lot of thinking and memories, I am going to try to condense it into a blog post.

    And thanks for reading and replying, it feels good to know that things experienced in pain and isolation actually can reach other people!

  11. Cecile you have not unmade my day :) I understand what you are saying. I look forward to reading your post.

  12. I did write something, but it turned out a little differently than I originally planned - that is the way if often happens!

  13. "...But what I also want him to know is that all his classmates have their fair share of issues too. There'll be the kid who is overweight, the boy who cant play sport, the kid that cant keep up with the rest academically, the kid who acts out in class because he lives with violence at home, the kid that is always coming to school late and without lunch..."


    "...You dont have to have Autism to struggle to make friends, to be picked on, to be different..."

    ...and you don't have to lack autism to be similar instead of different in many ways either.

    There'll be the kid who is overweight, and maybe your son will have a more normal weight than that kid will have, and that's no reason to pick on either of them.

    You want your son to know that not being normal is cool, and he is totally loved and accepted for who he is, and that's great! I bet you'll love and accept *all* of who he is, both the abnormal parts and the normal parts! :D