The different responses that I’ve received when telling people about my autism diagnosis have been very interesting. Both in terms of what they say about people’s thoughts about neurodivergence, and the feelings they’ve left me with have been very variable. I wanted to share my thoughts on how different reactions have landed for me.
“Congratulations!”
What a wonderful response, thank you! It really does feel good to finally understand this about myself. It makes sense of so many experiences over my lifetime. I’m feeling less like I’m a rubbish neurotypical person and more like I can find my feet as a fabulous autistic one.
” (I think) I’m autistic too”
Yay! I’ve been pleasantly surprised at how many people have said this when I’ve shared. When I’ve shared in a group setting it’s often the person I feel most drawn to who shares this. I feel like I’m starting to find my people and that’s really exciting. If this is you and you fancy a chat about it all please do get in touch!
“You must it very mild”
I have mixed feelings about this one.
On one hand, yes. I made it to 42 without anyone suspecting I might be autistic, even myself. I’ve been outwardly successful in many ways—achieving academically, holding down “good” jobs, getting married and starting a family. And I acknowledge the privilege in that. I don’t in any way want to take away from the experiences of other autistic people who have more challenges and need more support than I do.
On the other hand, this response feels invalidating. It feels dismissive of the struggles that I’ve been through in order to manage all of those things. It also places all the emphasis on external observations of my behaviour, rather than displaying any curiosity about my inner experience:
- You might see me out socialising (although much less so the older I’ve got), but you don’t see the crash and exhaustion when I get home.
- You might see the jobs I’ve been able to hold down, but you didn’t see how much I had to restrict my social life in order to get enough down time to manage them, or how much anxiety I was pushing away to get through each day.
- You might not notice anything unusual about how I move my body, but you don’t see my fingers fidgeting hidden out of sight, or my hands vigorously flapping as soon as I get somewhere private. (I’m starting to allow my body to move how it wants to a little more openly, but there is a lot of conditioning to keep this behaviour hidden to overcome.)
“Everyone’s a little bit autistic” or “We’re all on the spectrum somewhere”
I choose to believe that the intent behind saying this is to express solidarity and seek common ground. However, similar to “you must have a very mild version” this lands as invalidating.
Autism was first described as a spectrum to take into account that each autistic person’s experience is different. It doesn’t mean everyone sits on a linear spectrum ranging from “not at all autistic” to “extremely” autistic. Rather, it describes a number of traits that different autistic people will relate to in different ways. Only those with autistic traits are described as “on the spectrum”. I really like the way this comic by Rebecca Burgess explains this.
“Don’t let it define you”
I know this is intended to be supportive. But it doesn’t feel that way. There are so many ways I could choose to describe myself: I’m tall, intelligent, autistic, British, a mother, sister, daughter, wife. Nobody would even think to suggest that I not let any of these things define me—except for my autism. If being autistic means having a brain that runs on an autistic operating system, how can that not define me? There’s no reason to say this unless you think there’s something negative about being autistic—which inherently suggests there’s something negative about being me.
I think what people really mean when they say this is “don’t let it limit you”. I actually think that not knowing this about myself has limited me far more. Now I have a much better understanding of who I am and what I need, I have less shame about not being able to keep up with a typical pace of life, and I feel like I’m starting to authentically thrive for the first time in my life.