I recently responded to a post from another advocate who was concerned that their efforts had not achieved anything and that all their work to change things has resulted in little or no difference. My response was to refute that concern and state that things are very different than they were when I started working as an autism advocate in 2005, largely due to the actions of advocates.
I have the beautiful gift of quite a lot of hindsight when it comes to assessing societal changes around autism as I have been advocating for almost fifteen years. When I started I was only aware of about five other autistic authors active in Australia. The discourse around autism was so deficits-based it made me cry and allistic parents rarely said anything positive about their autistic children. Diagnosis rates for adults – and particularly adult women – were low and there was little or no understanding of intersectional issues. Gender diversity was rarely mentioned and the sort of autistic community we have now simply didn’t exist.
I can categorically say things are different now and that there have been lot of improvements. Some of these include the vastly increased knowledge and understanding of autism in the wider community. When I started out most people had no concept of what autism was and their only reference point was the film Rain Man. While these days many people still have some pretty unhelpful views about autism, the conversations I have now with those who have no personal connection to autism are very different. People are a lot more receptive to what I have to say and I am often surprised by the level of knowledge others have.
Another difference is in the attitudes of allistic parents. I used to be terrified of meeting allistic parents as their attitudes were almost always highly negative. The idea that they were martyrs and somehow ‘victims’ to autism was rife. In some cases they viewed themselves as victims of their own autistic children! These attitudes still exist now and are prevalent in some areas but there is also a growing voice from allistic parents that embraces and respects their autistic children. I know a lot of allistic parents who are very receptive to my message and who are genuine allies for their kids. And when I meet parents of newly-diagnosed kids they may have some negative attitudes but they seem a lot more receptive to my message than their counterparts were in the past. There is still a lot of work to be done in this space but I have seen a clear shift since I started out.
There is also a much bigger autistic community and communities within that than ever before. A sense of connectedness and autistic pride is a lot more common than it was in the past. Once again there is still work to be done in this area and some of the online groups are cliquey and exclusionary. There is also some lateral violence which occurs within the autistic community where people attack others instead of fighting the oppression we face. I know people who will not be part of online autistic groups due to these issues so this is definitely an area for work.
Gender diversity and other Queer identities are much more visible within the autistic community than ever before. This is a great thing particularly given the significantly higher percentage of autistic people who are trans and gender diverse. However, against this positive is the issue of bigotry and transphobia, trolling and hatred levelled against trans and gender diverse people. Having a sense of pride and identity is great but until the bigotry has been addressed it will not be enough. This is an issue at an individual and a societal level and protections and respect for trans and gender diverse people are essential.
Areas where there is still a lot that needs doing include the prevalence of ABA, issues with representation and inclusion on decision-making bodies, issues with low employment rates and discrimination at work, bullying and mistreatment in schools and discrimination in health care – especially mental health care to name a few. We have definitely not ‘arrived’ yet and the work of advocates and activists is just as important and necessary now as it was in the past.
The positive changes I have outlined above have come about mostly due to the work of autistic advocates and activists and also allistic allies. I love that I can look back to a time where I was one of five or so people doing similar work and I am now one of thousands. The more the merrier where advocacy and activism are concerned. There is still a lot of work to be done but from reflecting on the past it is evident to me that things have changed and are continuing to change. It is essential to keep working to address disparities and oppression as these things are always up for grabs. It is not the case that progress will happen anyway and it is so important to keep going and keep challenging negative and exclusionary thinking and practices. So happy new year when it arrives and let us make 2020 a great year for progressing the good work which started long before I was on the scene.