Often, an autism diagnosis comes with an apology. I was lucky. My experience was positive – and was very different from what I’ve heard from many other autistic people.
I was a recipient of fantastic support from my Mum Ann Memmott so I was very well prepared. Even though I’d been expecting the diagnosis I still struggled with it. I felt sad for about a year afterwards. It was confirmation that I am not part of the ‘general’ population, and that I am different from other people.
Generally speaking, if someone is diagnosed as being autistic it’s because they are struggling with something and need some extra support. Often the struggles are to overcome the barriers between us and the rest of society, where built space is designed and used by people who are overwhelmingly neurotypical. Cafeterias are a great example of this. They are seen by many people as a social nirvana and are a staple in many schools and workplaces. I enjoy conversation, but I find it almost impossible to speak to people in these environments because of the sensory input from harsh lighting and background noise.
Autism is a sensory condition. We have eight sensory systems the first five being sight, hearing, smell, touch and taste which give us information about the world outside our bodies. Then there are three more sensory systems which give us information from inside our bodies.
No two autistic people have the same sensory profile, but most of the time we are hyper-sensitive on our external senses and hypo-sensitive on our internal senses. In short, we are normally getting too much information from what is around us and not enough from within our bodies. We have to deal with this imbalance, but it takes effort and can lead to sensory and emotional overload very quickly. Overload is when our processing has stopped, triggering a flight, flight or freeze response. Fight and flight responses are more obvious and tend to attract most attention and labels. However, the freeze response is often missed – particularly in autistic women.
Neurotypical behaviour codes are strict, inflexible and unforgiving. For example, it’s important to make and maintain eye contact, smile and have a conversation topic ready. First impressions count for a lot and if you don’t get it right then it can be hard to come back from that. I’m pretty good at it but I need to prepare and it’s exhausting.
As with the cafeteria example, coping with sensory needs on top of demanding social situations is especially tiring. It’s like spinning plates on a unicycle. It’s possible to do but it takes practice and it’s very difficult to sustain.
There’s a misconception that autistic people are antisocial. I think we like to be around other people but in ways that work for us, and with people that value and respect us. There are lots of autistic people who get along just fine in life. They are connected and supported and valued for being themselves – as we’d hope and expect for anyone. But I don’t know one autistic person who hasn’t experienced bullying for getting things wrong socially. It’s really no wonder that people sometimes prefer to stay at home, or to spend time alone, rather than risk unknown and challenging sensory environments and spending time with people who might hurt or reject us just for being ourselves. Sometimes the pressure to fulfil neurotypical norms is so much that it’s easier to avoid it altogether.
I like to socialise in bursts but I need time to regroup. I like to spend time with friends and I appreciate those people who don’t expect me to be social the entire time. Hang on to those people who allow you to be different and to be yourself.
Autistic Pride is an annual community event and celebration run by autistic people, for autistic people. I got involved with this because I was looking for an autism group that’s positive about autistic people. They’re surprisingly few and far between.
We focus on creating social spaces where people are allowed to be autistic. There’s no forced interaction and people can make choices about what they need. There are chill out spaces, quiet areas and the opportunity for people to engage in individual activities but in a group setting. I love watching a group of people in the craft area intently working and focused on their individual projects, while enjoying the company of others. It doesn’t mean I’m missing out because I don’t want to take part.
Connecting with other people is fantastic. If you’re struggling with it, I’d suggest:
- Start small. Don’t aim for big social events.
- Identify your special interest and run with it. Take that into a social space and use it as an avenue to socialising. This will help you to find people who share your passion and interests. This could be knitting, singing, football, dungeons and dragons, painting or anything else.
- Check out Autistic Pride, or other autism positive groups, ideally those run by autistic people.
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