I Wouldn’t Change It

Now that you’ve got a clearer picture, hopefully, of what autism looks like in my life and the mechanisms involved, I want to explain a bit about why I, personally, would not want my autism “cured,” were I offered the choice.

Maybe you think that it sounds awful. Being frequently assaulted by unfriendly sensory stimuli, not understanding the unspoken social rules, feeling distress at small changes that you feel you really shouldn’t mind, losing communities because you just can’t let go of things that no one else seems to think matter. These aren’t all things that I love living with, no. But they all come from the same place as the particular way making music gives me joy, the way I care about the people in my life, the feeling I get when I watch meltwater flow in the spring and the way I throw myself wholeheartedly into everything I do.

Autism is not just something I have, it’s the way I work. It’s an integral part of my self, and believe it or not, at some point I got to this place where I actually really love myself. I wouldn’t want to be anybody else.

I would hate to lose the things that make me me. Taking away my autism wouldn’t be making my life easier, it would be making me a different person. Most people have things in their lives that would be easier if their situations were different – if they had more money, a stronger support network, a different job – and that is what is true for me. If my situation was different, the things about autism that are difficult to live with would not be as difficult.

So, finally, let’s talk about the different models of disability, because that’s really what this is about.

In the medical model of disability, disability is a problem with the individual that needs to be “fixed” so they can live a better life.¹ In the social model of disability, disability stems from a mismatch between the needs of the individual and the systems and attitudes in place. Obviously, these are not the only models, and neither of them is perfectly right or perfectly wrong. But the social model has a lot going for it in terms of recognizing disabled people as full human beings with value and worth as they are.

The classic comparison involves a person who cannot climb stairs; should the person be “fixed” so that they are able to climb the stairs, or should we install a ramp?

Maybe physiotherapy, or surgery and rehab, or another medical intervention could help the person in question eventually climb stairs. Maybe it couldn’t. But even then, physio takes time – should they be excluded until they’re “more able?”² Whereas a ramp, once installed, makes life easier for many people (see the curb cut effect).

In the case of autism, we could look at making environments more sensory-friendly (see universal design), but a lot of what would improve autistic lives really comes down to knowledge and attitude. Understanding Monotropism, the Double Empathy Problem, and the neurodiversity paradigm,³ for example. If more people really understood and embraced the fact that not all brains work the same way, it would necessarily ease a lot of the social difficulties.

I started several times to write an “imagine a world where” paragraph, but it wouldn’t come out right. And I think that’s because so many behaviours I’d like to see a little more understanding of are considered rude or inappropriate by current standards. Self-isolating with noise-cancelling headphones or earplugs at an event when everything becomes a bit too much or even leaving early without having to make excuses. Being a little late for something because you got stuck in an attention tunnel and didn’t make it out the door on time. Direct communication about something that’s troubling you. Getting fixated on a detail that doesn’t seem important to anyone else and not just letting it go when they think you should, or monologuing about a subject that isn’t of general interest because you are just so excited about it.

So yes, I am disabled by the ways in which my autism and the world interact, and no, I wouldn’t want to change who I am because of it. But I can see ways in which I would love the world to be more open to my differences.

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Thank you for following along with this series. This won’t be the last time I write about autism, I expect, but I had a lot I wanted to get out here.

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¹ Thanks, I hate it.

² Please note the sarcastic quotation marks.

³ Did you read the links this time?

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1. AUTISM IN MY LIFE
2. SOCIAL-EMOTIONAL RECIPROCITY
3. NONVERBAL COMMUNICATIVE BEHAVIOURS
4. RELATIONSHIPS
5. STIMMING
6. SAMENESS AND ROUTINES 
7. SPECIAL INTERESTS 
8. SENSORY SENSITIVITIES 
9. SENSE OF JUSTICE AND MELTDOWNS/SHUTDOWNS 
10. MASKING
11. MONOTROPISM, THE DEP, AND THE NEURODIVERSITY PARADIGM
12. I WOULDN’T CHANGE IT ← you are here!