Autism's in the news

1 February 2016

Dear Friend,

Autism has been in the news this week. And what an amazing story. A beautiful little girl, Coco Bradford aged 5 broke her silence and asked mum for 'more toast please'. Such a fantastic moment for the family, I can imagine the mums absolute delight over the progress her daughter has made. The family shared their story on Facebook and it seems it was picked up by the daily mail and then appeared on TV shows like This morning and the Wright stuff. 

Something about this type of story in the news just makes me feel uncomfortable. I am not being negative or undermining the amazing success of this family in getting their child the support that she needs and is thriving with. My issue is with how these stories are represented because it gives an impression of a miracle cure.

Let's be clear here. There is no known cure for autism. 

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. (Source: national autistic society.)

I know that some parents of autistic children will have watched the news or read this article to find out what treatment or support this girl received to give such a fantastic outcome because I did. 

I am not looking for a pill (or anything else) to take my son's social difficulties away or help him understand his emotions. 

My child is not ill and autism is not a medical condition. He has a developmental disability... 

But I am still drawn to stories like this.

According to the daily mail article, this girl has had success through ABA or Applied Behaviour Analysis. In America demand for this type of therapy has increased tremendously and it is now one of the most widely used behaviour therapies. 

What is ABA? 
ABA, applied behavioral analysis, is simply the application of behavioral principles, to everyday situations, that will, over time, increase or decrease targeted behaviors

Simply?! That's easy for them to say. If I understand it correctly ABA is all about stopping the autistic behaviors like stimming (arm flapping), walking on toes etc and replacing them with more normal ones.

Um, this makes me feel really uncomfortable as I have read autistic people talk about why they stim in such an eloquent way as providing them with comfort, being like breathing. It also worries me that the same people who are behind these methods were advocates of electric shock treatment not so long ago.

I have questions about how these behaviors are stopped and I have read that the therapy involves a lot of repetition. Would my child enjoy this? Probably not. 

For me, as a teacher of 20 years plus, teaching must be fun! Would it be fun? 

I had so many questions I researched further and came across this article from March 2015 in the guardian: Does ABA therapy open society's doors to children, or impose conformity?

This is a balanced well written article that gives varying viewpoints. It acknowledges that:

Over 40 years of scientific research on ABA has empirically validated the approach as effective in increasing intellectual aptitude and modifying the social and emotional behavior of children with autism to match that of their typically developing peers. 

It is helpful to read the testimonies from autistic people like Amy Sequenzia, who describes herself as, a non-speaking Autistic. She argues that defining success as behaving like a non-autistic person is unethical and abusive. Whereas other autistic people have acknowledged that ABA helped them to communicate and understand social expectations better. 

It seems as with most areas of autism there is no right or wrong answer here. Rather that as parents we must find and choose the best therapy for our children based on our gut feelings and beliefs. 

One testimony that I really identified with was that of Paddy-Joe Moran. Paddy is an autistic author and the administrator of online advice service ASK-PERGERS. He feels that ABA doesn’t take into account the reasons why some of these behaviors are difficult for autistic people. 

"It seems to deal with the surface element, as in ‘we will teach your kids to be able to make eye contact’, and not actually look at it with the view of ‘it is uncomfortable and painful for your child to make eye contact with other people, 

It seems that the premise of ABA is to make my child like his peers. To fix his behaviour. This is totally against my own beliefs. I have written before that most of the time my sons difficulties are caused by others not understanding him not the other way around! Isn't it time we started accepting difference? 

What message would I be giving my son if I spent my life searching to cure him? To modify his behaviour? You need to be made better? You are broken? Your behaviour is wrong? For a child already suffering with low self esteem this could be dangerous! 

Are we going to see a massive increase in the number of parents wanting ABA therapy now? Will we follow the American example? Time will tell. But I sincerely hope not!

The day to day normality of autism is not news worthy or exciting. It is unbelievably normal to us. But our children are anything but normal, they are amazing, beautiful, fun, cheeky, funny, extraordinary individuals who we love with all our hearts. 

I would love to see autistic people represented more fairy on television and in the media not just miracle stories.  Let's have a return of programs like the autistic gardener, showing autistic people at their brilliant, highly individual best.

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