Voices From the Spectrum #33: Jay Avery Rowe on Autism Advocacy
Jay Avery is a 22-year-old, nonbinary autistic from England. Jay is currently pursuing a degree in Math and Physics while self-teaching Java programming and wildlife photography. Jay blogs about their experience on the spectrum at https://autisticality.com/. This week Jay Avery Rowe shared with us their experience growing up on the autism spectrum and how they developed a positive autistic identity.
In your blog, you discussed the importance of seeing other people like you and how that helped you see a future for yourself. How can parents help their children see a future for themselves?
This is a good question, but really tough to answer! The reason I couldn’t see a future for myself when I was younger is primarily because I had no idea I was autistic. I had a strong sense that I was different or broken, but I couldn’t express exactly how, so I couldn’t extrapolate for myself. The solution to this was obviously for me to know I was autistic. But any parents of autistic children who are reading this now will presumably already know they’re autistic – it’s tough to reach the people who need the information the most because they don’t know they need it!
An important aspect for parents of those who have a diagnosis is that autistic children should be informed about autism. I think it’s unequivocally wrong to ever keep the diagnosis a secret from the child. And beyond that, they need to be taught about what it means to be autistic in value-neutral ways: that it’s just the way they are, rather than something which must be removed or fixed before they can be a valuable person (or a person at all). When I was younger, the people around me reacted to my feelings of hopelessness by telling me “everyone feels that way” or “one day you’ll be able to do this thing that seems impossible”. That’s a natural response when you don’t realise that someone is struggling for a specific reason, but in fact it made me feel worse.
If people had instead recognised that I had more trouble with things than others, I might have been able to imagine a future for myself that didn’t require me to be like everyone else. But without the possibility of that idea, I was just left with the inevitable sense that I had no future. Denying an autistic child’s difficulties is the opposite of helpful for their understanding and acceptance of themself. Instead, you should acknowledge the difficulties they express, support them, and work together to create a future that takes their reality into account.
What misconceptions do people have about autism that you’ve encountered?
Oh my goodness, there are too many to list! There’s the obvious things, like people forgetting that autistic kids grow up into autistic adults, the overuse of meaningless functioning labels, the general stereotypes about autistic traits and the idea that everyone expresses them in the same way… These are all topics that I could (have, in some cases!) write a lot more about, and also that lots of other people have written well about.
One of the misconceptions that makes me the most angry is one that a lot of professionals, parents, and even many autistic people, still have: the idea that “the autistic spectrum” means that there is a straight line with “very autistic” at one end and “not autistic” at the other. But that’s not remotely how it works. There are an infinite amount of different autistic traits. For every single trait, and individual person can present differently.
And this doesn’t just mean there are a bunch of ‘high’ to ‘low’ sliders which you can total up to get an ‘autistic score’. Because individual traits aren’t straight lines either. They can vary for any individual person based on environment, stress levels, support, and many other factors. They can be expressed differently in different situations or dependent on external and social pressure. They can have positive and/or negative effects depending on how the individual is able to respond to their own traits and what kind of support they have.
If there was a precise and accurate way to measure every single autistic trait and total them up to give an objective numerical measurement – trust me, autistic people would have found it. But there isn’t, because autism doesn’t work that way. Trying to squash every variable human being into one dimension just doesn’t work.
How did the close people in your life help you develop a positive autistic identity?
The most significant people in developing my autistic identity have been other autistic people. Some of those have been close friends, and others just distant idols. Ultimately, it’s been about understanding myself through the lens of autism, and other autistic people have been the most helpful source of information for that. Learning about other people’s traits and experiences, trying out their coping mechanisms and solutions, talking about my experiences and having people actually relate to them. All of those things enable me to understand myself as an autistic person, instead of a broken person.
What is the best way to make someone more aware of, more sensitive to, or more understanding of people on the spectrum?
This is a big question. I guess the short version is simply to listen to autistic people – both the general abstract experiences of people like me, and the specific personal experiences and needs of those they are in contact with (like family members or clients). Autistic people are people, and the first thing you should always assume about a person is that whatever they do, they are doing it for a reason. That applies for everyone – including children, babies, people whose communication you can’t understand, and autistic people in general. If something seems confusing or shocking or inappropriate to you, don’t assume it’s because the individual doesn’t know what they’re doing. Assume it’s because you don’t know why they’re doing it.
What mistakes do neurotypical autism advocates make?
I think the biggest mistake non-autistic advocates (like parents) make is assuming that they understand what it’s like to be autistic. Of course as a parent, you know your child well – but that doesn’t mean you know what it’s like to be your child. The only people who really know what it’s like to be autistic children are people who have been autistic children. It might feel upsetting to be told you don’t know what it’s like to be your child, but don’t take that as an insult. Take it as an opportunity: there is a rich resource of people who can understand some of your child’s experiences even better than you can – use them!
Who is your best ally? Why?
My best allies are my immediate family – my mum, my dad, and my brother. They all support me so much in different ways, I can’t possibly express enough appreciation for them.
My mum uses her neurotypical ‘superpowers’ to help with things I’d otherwise find impossible. She helps me communicate and advocate for myself, to keep track of different things that are going on, and understand what I need to do in difficult situations. Without her, I feel like I wouldn’t have survived at all, or at least couldn’t have anything like the life I do – but instead I am supported and gradually gaining independence.
My dad didn’t know he was autistic until after I was diagnosed. He helps me translate the non-autistic world, because our brains speak the same language and he has many years more experience than I do. I’d like to think I do the same in return sometimes too! Without him, I would have much less understanding of myself at all – but instead I have someone who I can introspect with like no-one else.
My brother probably knows me better than anyone. We’re very different, but we’ve always been close and we communicate amazingly (shockingly!) well. He has such empathy for autistic experiences, and I’ve learned empathy for non-autistic experiences in return. Without him, I would never believe it was possible for me to understand or be understood by a non-autistic person – but instead my oldest friend is one.