I attended a conference on Wednesday of the week just gone. The organisation which hosted it was a research body funded by he Australian Government. They are great people and have a strong focus on inclusion and making use of the wisdom of people on the spectrum to inform the design of their research. They have staff members who are postdoctoral students who are on the Autism spectrum. Put simply, this organisation ticks all the boxes in terms of my involvement. My presentation was very well-recevied and the managers and the CEO enthusiastically posed for photos with me afterwards. Presumably the pictures will be featured somewhere in their newsletter or website.
After the ‘nice’ conference, there was another event at the same venue. This event included a speaker from Autism Speaks and an academic who receives funding from said organisation. If you are fortunate enough to have not encountered Autism Speaks (or Autism $peaks as some people write it), they are an organisation which does not seem to value the perspectives of Autistic people. There are no Auties on their Board and a lot of their literature focuses on the ‘need ‘ for a cure for Autism. Apparently, someone typed the search criteria ‘what do Autistic people hate?’ into Google and Autism Speaks was one of the top hits! I don’t want to get into a debate about individual organisations, however. What I’d like to look at is the concept of a ‘cure” and why Autism advocates like myself find it somewhat problematic.
So, what is Autism? Is is a disease? A mental illness? Is it all negative? Are there any ‘good’ attributes around Autism? Do Autistic people identify with Autism as being part of our character? The answers to these questions often vary depending on who is being asked them. For me, Autism is an integral part of who I am. Many other Autistic people feel this way too. If you removed my Autism, I would cease to be Jeanette. I like being Jeanette – she’s awesome and writes books! So if somebody said to me ‘here’s a cure for your Autism. It only costs a dollar’, I would decline politely. However, where these things can get tricky is that some parents of kids on the Autism spectrum only see the negative attributes or they see the way the world reacts badly to their child and victimises or discriminates against them. Many of these parents would be delighted if they could ‘cure’ the Autism issue. I understand their perspective, even if I don’t agree with it.
Here is a summary my thoughts around ‘cures’ (keeping in mind that there are lots of interests and opinions about these things in the world and many will disagree with what I say):
- I am a successful, strong, wise, positive person with Autism. I am proof that Autistic people can overcome difficulties to achieve great things.
- Diversity is great. ‘Curing’ Autism and other conditions, illnesses etc would water down diversity and create a homogenous human race. I couldn’t think of anything worse. Diversity teaches people about others’ perspectives.
- If somebody ‘cured’ my Autism, I would lose a whole bunch of amazing attributes. I would miss them.
- Often the bad experiences that Autistic children and adults experience are more around the world not being Autism aware than any actually issue caused by Autism.
- Autistic people form a culture. This may be a little controversial, but a ‘cure’ could be tantamount genocide, particularly if Autism could be detected before birth and parents-to-be decided to terminate Autie babies.
- It would seem that many influential thinkers, writers, scientists etc in history may have had Autism spectrum conditions (Einstein, Newton, Mozart etc). Dr Temple Grandin once said that if there were no Auties, all the non-Autistci people would be still sitting in a cave, socialising! We need Autistic people and divergent thinkers to solve problems in all areas of life. Rather than begin a drain on the community, Autistic people often make amazing contributions.
- If we spent all the money and effort that is being spent trying to ‘fix’ Autistic people and make us neurotypical on trying to value and include people on the spectrum instead, that would be a much better allocation of resources,
Just some considerations for you to consider…
One of my Asper-powers is writing…here’s a little bit of proof 🙂