I watched a movie for my movie night on Friday called Please Stand By. It is about an autistic young woman living in California. I won’t give spoilers in case you watch it but it got me thinking about why advocacy is so necessary. Attitudes toward the autistic woman were very much that she had no capability to live independently and little to add to the world but as the film unfolds it becomes clear that the young woman is highly talented and resourceful. I’m not sure of the disability politics of the filmmaker but I enjoyed the film – except the disturbing bits about Applied Behaviour Analysis* which were very hard to watch. When the film finished I said to my move night visitors ‘I need to write a blog post about this.’
In fact my blog post is a bit broader than the film. I am not a movie reviewer! The thing which struck me most about the film is that it demonstrated quite well why advocacy is so important.
The film showed this through:
- Highlighting that many people view autistic people as incompetent and like perennial children
- There are ‘therapies’ for autistic kids which essentially mirror training a dog. This needs to stop.
- Autistic people often have so much to offer the world but this is not noticed or understood by many people.
- There is still a view that autistic people have no feelings or empathy. This also has to stop.
In terms of the ‘real’ world, I have been knowingly advocating since 2005. Things have certainly changed since then but there are still things which really need attention. I – and presumably other autistic speakers – used to only be viewed as a token or the ‘colour and light’ when I spoke at autism events but now there is a growing knowledge that autistic people are the experts in autistic experience (I know hey, who would have thought??!). There are autistic-led organisations like Yellow Ladybugs and the I CAN Network doing great work in empowering autistic young people. Autistic viewpoints are often featured in news media and not only as ‘human interest’. I see these developments as good things.
However, there are many areas where things require significant work. These areas include:
- Employment. We are mournfully underrepresented in employment numbers and in Australia we are almost six times more likely to be unemployed than the general population. This is not usually because we are unskilled or unemployable but due to a range of factors – some structural and others related to the attitudes of individual employers and there being a load of unwritten rules at work that we do not understand or notice. This means our skills and talents may be overlooked and employment can be difficult or impossible when in fact this does not need to be the case.
- Education. We have far lower education attainment levels than the general population. Our children often leave school due to bullying or other issues and simply never go back. Higher education can also be a fraught place for autistics. While schools seem to be getting a bit better at inclusion there is still a long, long way to go to address these issues.
- Some autism organisations have what I term legacy thinking, meaning that they once had a good message but now have outlived their usefulness. These are often the organisations who have no autistic representatives on their board or who promote ‘awareness’ events which are exclusionary such as ‘light it up blue.’ Organisations supporting autistic people really do need to be genuinely inclusive themselves.
- Accessing healthcare is a nightmare for many autistic people and families. Health settings such as hospitals can be terrifying and exclusionary and medical professionals can be ignorant about autism and do more harm than good. It is so bad that many of us elect to not access treatment even when we need it. At the very least, training for medical and psychiatric staff needs to include some autism training as part of accreditation and qualifications.
- Gender diversity and sexuality are a significant consideration for many autistic people. However, attitudes around sexuality and gender diversity can be stuck in the dark ages a lot of the time, especially for Disabled people. Some believe that we are all cis gendered and asexual or heterosexual. This goes across all the items listed here – in employment, education, healthcare etc. There needs to be much more advocacy and understanding in this space to ensure young people grow up safe and autistic people are seen as who we are in terms of our whole identity, whatever that may be.
- Wider society has a lot to learn about autism and autistic experiences. Sensationalist pieces in news media and stereotypical autistic characters on TV do nothing to help. We need more representation of autistic experience and also autistic characters in TV dramas who are not white cis gendered heterosexual middle class men. Attitudes around disability and other differences need to be improved on a societal level too.
That’s adds up to a lot of advocacy needed! Thankfully there are now quite a lot of us working on these things. When I started there were a handful of us in Australia and a few more overseas but at this point in time there are so many autistic advocates and activists and also some genuine allies coming from a place of respect and listening, supporting this work.
I absolutely long for the day that I will not be needed as an advocate because we will have achieved all we need to. It is important to understand though that nothing is set in stone. This stuff is all up for grabs, making it so important to advocate and be a strong presence fighting ableism and discrimination. We don’t know the future but we can help to shape it.
* Applied Behaviour Analysis (ABA) is a ‘therapy’ for autism that is discredited by many and has been known to result in post-traumatic stress for some of those it was used on. Based in a rewards and punishments model, it seems more concerned about making children look somehow ‘less autistic’ than actually supporting their development. Behaviour training focuses on making kids stop stimming and often forces eye contact. We definitely do not condone ABA at Whimsy Manor