Monday, April 4, 2011

Autism awareness

April is autism awareness month. I am reading as much as I can to see what people are doing to promote awareness; autism is one of my special interests after all! And as so often before, I notice that emotions are running high. Some neurodiversity proponents are getting upset with the 'curebies', and some people seeking a cure for autism are dismissing those who say they want acceptance, not a cure.

For those of you not familiar with the term neurodiversity, here is a definition I grabbed off the web:
"Neurodiversity refers to the idea that people experience the world differently based on their neurological attributes. It is most commonly applied to people with autism-spectrum conditions such as Asperger's Syndrome, but has also sometimes been applied to describe certain mental illnesses, learning disabilities, and other neurological differences. The neurodiversity movement parts company with the disability rights movement in that it does not recognize neurological differences as disabilities, but rather as equally valid, unique, and socially beneficial neurological experiences of the world that should be celebrated."

On the other hand, many people see autism as a disease, a disability, something for which a cure should be found. It is easy to see why these groups get upset with one another. I have never really participated in these discussions, partly because I did not feel strongly drawn to either side. But all this bickering and fighting is bothering me enough this time to try and write about it.

Firstly, I think both sides are doing lots of things right, and some things wrong. The people wishing for a cure – I believe they are pushing for money to be made available for research into autism -that is good. They want their kids to be happy, and lead fulfilling lives – that is good. They want to spare other parents the pain and frustration they experience, also good. But calling autism a disease and a disorder – not good. Speaking about tragedy and epidemic and crisis – not good. Dismissing the voices of verbal autistic people – not good.

The neurodiversity proponents wants acceptance for autistic people and others with differences – that is good. They want autistic people to be happy and lead fulfilling lives – that is good. They want support structures and resources for autistic people – that is good. Calling people in the other camp 'curebies' – not good. Calling them selfish – not good. Denying them the right to their feelings and frustrations and wishes – not good.

How much more could be accomplished if both sides could talk to each other in a respectful way? Work together to find meaningful solutions?

You may ask in which camp I feel myself comfortable. Hmm. I think I lean towards the neurodiversity group. Which does not mean that I am shooting the cure group down. It is just that I believe there must be a middle ground. I am what is called 'high functioning'. Which means that I can live independently and my differences do not make it too hard for me to function in society. But I still have Aspergers, and I like being like this. I do not like the majority's reaction to my 'difference', but I like who I am. I do not want to be cured. I also do not like being dismissed because I am high functioning. It seems that I am not autistic enough to be taken seriously, just as nonverbal autistic people are too autistic to be listened to. Thus people feel they have the right to talk for us.

If you want a cure for autism, what exactly it is that you want? Do you want your child to sleep better? To eat healthier without a battle? To stop hurting himself and others? To not have such a huge impact on your family life? To live a life without being judged? To be able to live independently as an adult? I can understand all these reasons. I am honest enough to admit that if I had a child with some of these challenges, I would be exhausted and tired and probably hoping for a 'cure' too. Who knows? We do not live in an ideal world where people are tolerant of differences, and the reality is that autistic people are sometimes very stressed and unhappy – not necessarily because of who they are, but because of the reactions to who they are.

I can only talk for myself when I say I do not want to be cured. I work very hard to 'fit in', it is a choice I made. But it comes at a cost, and some of my uniqueness is lost in the process. And I think that is sad. If I was to be cured, I would lose most of what makes me unique and special. Would that be a good thing?


  1. What an interesting insight into living with autism ... thanks for this honesty and clarity, Cecile. And I did not know that this was autism awareness month.

    I might have mentioned at some time that I had the privilege to work for Steve Shirley for ten years - go see her web site at Her life is inspirational and I have many stories about her. Did you ever hear of Priors Court School? It sounds really interesting too.

  2. I agree with you. I have 2 with autism, one is higher functioning (not as high as you, but can talk) and the other low functioning (can talk sometimes when his body/senses are not in the way, which is almost all the time.) I used to want to 'fix' him.

    Now here's what I want:
    I want to talk to my son about what's important to him.
    I want him to slow down so he can enjoy thing-not just keep moving constantly to feel his body.
    I want him to not be a danger to himself by running, moving, biting just so he can feel his body.
    I want people to realize the incredible intelligence that's hidden under the constant stimming.
    I want him to be better able to control his world by using some form of language.
    I want other people to meet him halfway and accept his uniqueness.
    Mostly I want him to be happy.