A long time ago I didn’t have an autism diagnosis. I felt very alone, like I was the only person like me in the world. Some years later I gained a diagnosis of something called Asperger Syndrome which I thought meant I would be a social outcast forever. I interpreted the diagnosis – made in 1994 when there were very few services and less understanding of autism – as being a condemnation to eternal nerdiness and justification of everything the bullies at school said about me. It took me another seven years to accept my diagnosis. I wrote a book about my life and still I felt isolated. Most of the autistic people I met were older men who liked technology and I didn’t feel lot of connection.
In 2009 I attended a conference as a speaker – my first autism conference. The topic was women and girls on the autism spectrum and I found myself in a room full of fellow autistic women and girls. This was the moment that I stopped feeling alone in the world. This was my moment of finding my tribe. I felt such an amazing feeling. I felt like I had come home after a very long time away.
Since 2009 I have a lot more autistic friends – of all genders but often women. The world has changed in some significant and some subtle ways. Social media seems to be the most meaningful addition to social life from my perspective. As a writer and advocate I love the ability to share ideas and books widely and have conversations.The social side of social media is often great for autistic people too. Many of us prefer typed communication to spoken or face-to-face communication so things like Facebook and Twitter are obvious places for autistics to converge.
I have met many people who have become friends and colleagues on social media. I belong to many online autism groups run by autistics . Today I attended a lunch organised by on of the groups I belong to. I had already met most of the guests but there were a couple of new faces. We were at the restaurant from 1pm until after 5pm, mostly just talking and sharing experiences. I left with the intent of catching a train to the friend I am currently staying with and found that most of the people from lunch were still talking outside. I was offered a lift and spent a very pleasant half hour catching up wth someone I rarely see in person but communicate with regularly with online. Today’s lunch epitomised what I see as my experience shared with autistic friends – meaningful conversation, shared understandings and connections and feeling able to be ourselves without fear of criticism or bullying. We outnumbered the staff in the restaurant which amused me and the staff were in fact really nice. As is usually the case when I am among my autistic peers, I felt I could be myself and I think probably everyone else there did to. For people who so often feel we need to mask who we are and deny our own identity, we have a great time being ourselves.
Of course autistic people do not all get along and, similar to neurotypical people, not all autistics are respectful, thoughtful or kind. I have a moderately lengthy list of autistic people I have blocked on social media over the years. I should note that the reasons for blocking people have never been the stereotypes of ‘poor autistic behaviour.’ The fact that we have a tribe does not mean all the members of that tribe are people I want to spend time with, but having a tribe has been such a helpful and empowering thing for me.
These days autistic young people and kids are often able to find their tribe and get the benefits of belonging to their autistic peer group at quite young ages. I am so happy to see those connections happening between autistic young people. I felt completely alone for so long but I think that sense of isolation and otherness is less often the case for young people now.
it would be great if all autistic people and access to an appropriate diagnosis and the chance to connect wit their neurodivergent peers.
My experience of finding my tribe had a huge impact on my sense of identity as an autistic person. I felt I didn’t need to hide who I was and act and mask and pass. This was a big step for me as I spent most of my teens and young adult years trying tone someone that I wasn’t. Along with finding my tribe came my growing sense of pride in who I am.