What a difference 1826 days makes..5 years of trying to change the world

Just under five years ago I started writing a book – the second time in my life that I had done this. The second book was driven by a passion to make a difference. I had recently met a young autistic man for whom – for a variety of reasons –  his diagnosis had been a means to limit him rather than empower him. I told him I was autistic and had written a book and worked in the public service. His response was ‘That is not possible. You are lying.’ I was quite affronted by this response until I realised that in his world my life really was impossible. Speaking to this young man I discovered that he thought working was for other people and education was unattainable.

The book which I began in early 2013 was about building understanding and confidence around employment for autistic teens. Writing it directly related to meeting the young man I mentioned before. It was published and is called The Wonderful World of Work: A Workbook for Asperteens. Its publication marked a fundamental change in my life. Almost overnight I became passionate about making change. I started seeing myself as part of the autistic community, and none of the work I did was for personal gratification or recognition. I didn’t want to be rich or famous – I wanted to change the world.

The employment book was published and my outward focus on changing he world didn’t go unnoticed – I was asked to do a number of presentations, the most notable one for TEDx Canberra on autism and resilience. While the language and metaphors used in the TEDx presentation are a little dated (you will never hear me say ‘Autism Spectrum Disorder’ these days!), the message is sound. The more involved in the autism world I became, the more I learned.

That epiphany happened five years ago now and my passion shows no signs of abating. I’m not going to list my accomplishments because it is silly, unnecessary and kind of braggy. What I will say is that autistic people are generally very knowledgable about their passions and I am no exception. I now have four books published and another two on the way. I have spoken at a bunch of things and I have a wonderful network and community of autistic friends and colleagues. My life is very affirming and I am valued and respected. Every autism-related conversation I have gets stored in my memory and becomes part of my knowledge. The result is an increasing and nuanced understanding of autistic experience beyond my own. I am a lot more willing and able to talk to strangers about autism too. I  even wear a badge on my bag, and sometimes on my top, that says ‘Totally Flaming Autistic’ (I know, Ausome hey!)

I have noticed a number of things changing in the past five years. Some of the positive its of this are largely due to my fellow autistic advocates and activists working to change the world as well. Please note that these are observations rather than facts so they may differ from others’ observations. We do all approach the world from a  different perspective.

A lot of things have improved and a lot have remained about the same and some have got worse. And some thing are just different.

  • We have what I have almost aways experienced as an amazing, supportive community. May of us have found our tribe and our tribe is this vibrant, supportive thing (mostly). Autistic people who have felt alone and isolated increasingly have have the opportunity to connect with other autistics. There are toxic people in any community and I have had some bad experiences but mostly I have experienced so much care and respect and support from my fellow Autists
  • Typed communication has taken off in our community. For many autistic people, social media platforms are the best place for social interactions. We can share information around the world almost instantly and connect wiht there autistic people. There is also a great autistic blogging culture
  • While mostly supportive, sometimes social media groups or individuals on social media can be damaging
  • Views which were once outliers (e.g. the idea of autistic communication as a different culture or language) are starting to become more mainstream, at least within the autism ‘world’
  • I know a number of children who are autistic advocates, making videos or speaking up in other ways. This is one of my favourite things to see. I wish that was the case when I was a little Jeanette and think it is just wonderful that it is now. Being able to speak up and advocate demonstrates that a person has strong degree of self-acceptance and self esteem. These attributes are drivers of positive outcomes in childhood and adult life
  • Despite a load of efforts, bullying of autistic kids seems to have not improved much. If anything it is worse because bullies are online too so kids can’t escape bullying anywhere in their world. This needs to change but I don’t know how to go about changing it
  • Autistic parents are so much more visible. This is awesome. My mum was an autistic mum in the 1970s ad 80s.It was very different then
  • There are some backlash-type issues with things like kids responding with ‘That’s to Autistic’ to something they don’t like. This is a similar insult as ‘That’s so gay’ was ten years ago.
  • Charlatans are everywhere, selling dangerous ‘cures’ for autism and preaching damaging nonsense. I am unsure if this is more widespread than in the past or we are just more aware of it now. Whichever, there is no ‘cure’ for autism so anyone peddling one is at best selling snake oil and at worst hurting autistic people
  • There are still ‘legacy attitudes’ particularly in some autism organisations run primarily by neurotypical people. This can manifest as tokenism on Boards, programs which are based on damaging, invaliding practices (e.g. ABA) or abuse / criminal acts by staff members
  • The media’s concept of autism has changed somewhat but there is still a ways to go
  • Understanding that autism is a ‘thing’  exists in the wider community which it didn’t before. However this does not necessarily translate to more inclusion and respect
  • This is an odd one and maybe not too significant, but on online shopping and craft sites like Etsy and Redbubble there are lots of products under the search term ‘neurodiversity’.

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