Bix is a forty-nine-year-old writer, late-diagnosed Autistic advocate, and former urban goatherd from Oregon. He blogs at This Mediocre Life. This week Bix shared his experience as a late-diagnosed Autistic adult and ideas for balancing the medical and social models of disability so that Autism is more accurately represented.
As a late-diagnosed autistic adult, did you disclose your autism to coworkers or friends? Why or why not?
Most people I know, at this point, are internet people (I’ve gotten progressive less social over the last decade, well before my diagnosis), and I was posting openly about the process since it started in 2016.
I mentioned it to colleagues at the nonprofit I’ve since left as opportunities presented themselves. I get why some people do not disclose in various circumstances, but for me, I knew it was going to put a sort of “aha!” context on many different parts of my life, for myself, and for others.
Describe the level of autism awareness or acceptance in your community. Do you feel part of a community that is embraced and supported? Tokenized? Misunderstood? Stigmatized? Some combination of these?
I’m not really sure how to answer this to be honest, as it mostly hasn’t affected anything. Which I guess reflects either a level of acceptance or the degree to which I don’t have anything other than cursory day-to-day interactions with other people, so I’m not really in any environments where acceptance might or might not be any sort of overt issue.
Post-diagnosis, I did take a job placement for awhile that I got through Vocational Rehabilitation, and it was a mixed bag. On the one hand, the business was accustomed to working with VocRehab and so were generally ahead-of-the-curve on awareness and acceptance; on the other hand, my relationships with my VocRehab caseworker and my job coach could have been better, because they kept not listening to me when I started raising concerns early on. As I said, mixed bag.
Most of any lack of understanding has come from the various processes of seeking service or financial support, but it remains to be seen how much of that has been legitimate lack of understanding on the part of providers, and how much is a result of me still learning how to recognize, describe, and define what I need.
(The one glaring exception here is the moment a colleague dismissed and disparaged a meltdown I was having, and/or my attempts to communicate it, as “venting”. It directly contributed, along with other issues, to my departure from a “restricted interest” that I’d been involved in for nearly six years.)
Really, most of the awareness and acceptance came from my self-directed reading online after my diagnosis, which especially in the early days mostly was the daily relief of finding other people who had had, or were having, experiences similar enough to my own to cause many instances of going, “Yes, that’s it!”
The internet can be a trash heap, but can also be a godsend.
You’ve written about the harm of what you’ve described as an “Autism myth” that is promoted by the autistic community (namely, that the environment creates disability, not Autism). Why do you believe it’s harmful for autistic individuals to promote the social model of disability?
What I think is harmful is stressing the social model to a degree that’s out of proportion.
Some aspects of being autistic can be described by the social model, some by the medical model, and it makes me uncomfortable and anxious when I see either everyday autistic people or celebrity autistic people make blanket claims to autism being described entirely, or even primarily, by the social model.
(I confess that I also find it strange that autistic people at one and the same time like to talk about how they are so honest, yet at the same time make a disingenuous argument about what does and does not sometimes make being autistic difficult.)
My meltdowns and shutdowns are not the social model. Hyper-focus making me forget to eat or go to the bathroom to the point of bodily distress is not the social model. Certainly the social model can make things like meltdowns and hyper-focus worse by not responding to or respecting my needs, but that still starts with me suffering an actual physical or psychological problem.
So the potential harm, for me, is that if we can’t accept that some aspects of being autistic are disabling in and of themselves, we are being dishonest, and we are erasing lived autistic experiences. It would be bad enough for autistic people to engage in that such erasure amongst themselves, but imagine if NTs picked it up and ran with it.
If we are here in April talking about both awareness and acceptance, that has to include among autistic people, too. It’s not just about awareness and acceptance on the part of NTs
Are there dangers in promoting either the social or the medical model of disability too ardently? Although it’s impossible for everyone to agree, in your opinion, what’s a good guide for acceptance and support of the Autistic community? What are some fundamental principles/guidelines NTs should follow in this regard?
It’s not so much about the ardency as it is about the balance and proportionality.
There’s a strong thread in some online autistic circles to take one’s own experiences as indicative and representative of those of other people, especially if someone has really committed to a narrative of autistic celebration. If the idea is to listen to #ActuallyAutistic people, we have to do that ourselves, too.
(Pet peeve from my earliest post-diagnosis days: people extolling their own virtue as polymaths in ways that suggest all autistic people are unique and astonishing jewels just waiting for the world to appreciate them and their autistic superpowers. Some of us are, well, just mediocre at everything, including at being autistic.)
To be clear: most of the autistic people I’ve encountered online, from my early pre-diagnosis readings on Medium, to people I’ve found on Twitter, *are not this dogmatic about it*. I just rankle very hard when I run into it, and those are the sorts of things that tend to set me off. (Which carries its own risk of a lack of proportionality, I admit.)
Other Autistic writers have spoken about specific symptoms of Autism they want help alleviating or eradicating, but they wouldn’t want to get rid of the Autistic condition in its entirety. Do you feel this same divide? You’ve written about difficult symptoms you’ve experienced that you believe are strictly attributed to Autism (as opposed to environmental factors), but are there other aspects of Autism that you attribute to a positive autistic identity? Explain.
I don’t really think of being autistic as a positive or negative identity.
It simply explains why for the four decades prior to diagnosis I felt like a failure who was incapable of living a successful or self-sufficient life (.e.g, who knows what those decades would have been like had I known there was a thing around which I could have examined and demanded accommodation and mitigation). Given that I am only in my third year of even knowing I am autistic, I’m still figuring out what parts of being autistic are useful, what parts just have to be endured, and what parts internal tools or external understandings can help manage or mitigate.
I would just like to see a little more of that same dynamic—that being autistic includes all of the (1) useful things, (2) debilitating things, and (3) things that can be mitigated—expressly reflected back in other people.
That said, many of the things people claim as positive aspects of being autistic for me seem more like tradeoffs.
Hyper-focus, sure, but at the expense of bodily distress, and I can’t call it up on-demand, so it’s not something I can, for example, pitch to potential employers. I probably can see pattern recognition ability in me somewhere, but given the tendency toward behavioral and cognitive rigidity, that can also lead to seeing false patterns or obsessing over real ones a bit too much. I’ve written before that I don’t get the argument that being autistic comes with “superpowers.” In my experience, all these alleged powers come with a price on the flip-side.
I can’t spend my energy worrying about what would I change about being autistic. I can only spend my time trying to figure out what parts are useful (with costs), what parts are to be endured, and what parts can be mitigated.
It is what it is, and I’m nowhere near having it figured out.
What mistakes do neurotypical autism advocates make?
As you can probably tell from what I’ve already said, I tend to be more concerned with how autistic people talk about or label things among themselves, or how they represent being autistic, than about how NT allies (be they legitimate or just self-professed) behave. The issues seem to be similar, however: advocates need to be careful not to assume their own experiences are reflective of or representative of anyone else’s, and should always seek to have not just their own voices heard but those of others.
(This is where I make the proviso and disclaimer: I am a straight, white, middle-aged man. Being autistic is the only “strike” against me relative to the dominant culture. I am over-represented in autism discussions at it is, although maybe not as much as “autism parents.”)
As an adult who feels “as if they have been brought into a world that didn’t bother preparing a proper space for them,” what activities and/or settings make you the most comfortable, the most at peace, or the most fulfilled?
For me, I think it is mostly about routines than about specific activities and settings. it’s about control and predictability. I consistently eat the same things, for example, and even the deviations from the norm tend to be clustered into some routine non-routine choices.
But routines can also eventually go awry. The “restricted interest” I’d been involved in for nearly six years came apart for me pretty rapidly, and it was a source of fulfillment and reward right up until the moment where the downsides accumulated enough weight to force me to walk away.
I stay home with my cats, and I go to the zoo, and I read (always one fiction and one non-fiction going at the same time), and I watch television (always new stuff and one rewatch happening). Those are really the only touchstones.
The thing about the midlife diagnosis, for me anyway, is that even two years on I am still figuring out what the hell was happening for those previous decades and what all of it means for me going forward. So, I have the comparative steadiness of home and the zoo.
Everything else is still in that post-diagnosis freefall after every aspect of my life got thrown into the air.
A lot of this sounds like I’m down on being autistic, whereas I like to think of it as being realistic. But at the same time, since I’m only a little over two years into getting my diagnosis after four decades with no idea, I’m not sure if I’m quite at the point where I am being autistic so much as *still discovering what that means*.