Ableism and invalidation

I am autistic. How is it that after finally accepting that, I still sometimes have doubts? Well, external invalidation, mostly. Unfortunately I have very recent experience with this, so this might be a hard post to write.

First, some background. I was not diagnosed as a kid, and while I know this has some privileges – for example I stayed safe from ABA – it also screwed me up in terms of self image. I knew I was different than the people around me, yet had no explanation for that (for my queerness or my neurotype). I knew people around me thought I should change, and I internalized that as: who I am is bad. So not only did I not know there was a perfectly good reason for the things I felt and did, I came to believe I was not a worthwhile person.

Skip to adulthood. A therapist who had experience working with autistic kids was the first one to tell me I was on the spectrum, in my early twenties. You might think at this point I would begin to understand myself better and feel more okay about being different, but… enter imposter syndrome. For one thing, nobody directed me to information created by actual autistic people, so when I looked over lists of traits I just saw a ream of behaviors. I wasn’t sure that I could see myself in that. How was I supposed to know whether other people thought my nonverbal communication was atypical (or etc)? One small manifestation of anti-autistic ableism is the fact that the diagnostic criteria and readily available lay information about autism is written from the viewpoint of parents and professionals. It frames autism as a set of outwardly observable behaviors – because our behaviors apparently inconvenience them so much. Their experiences are centered and ours are ignored. This prevents so many people from figuring out they’re autistic, or in my case, from believing that I was even after having been diagnosed.

This went on for a decade. I knew what that therapist – who had known me for years and who I trusted deeply – had said, but I kept thinking maybe it was a mistake or an exaggeration. You could say it took another counselor noting that I met the diagnostic criteria during an intake, and then my current psychiatrist and therapist confirming and making sure it was in my medical records before I really accepted it, but that’s only slightly what helped. It took, mostly, just hanging out around other autistics. For months if not years I introduced myself on AutChat as “questioningly autistic” and then “diagnosed-but-forever-imposter-syndromely autistic”. But the more autistic people I talked with, the more I understood how many ways there are of being autistic and I began to see myself in other people’s experiences. I got more information about what it feels like to be autistic, not just how it looks from the outside. And finally, wonderfully, a couple of years ago I got to the point of: “HI YES AUTISTIC HI!”

So the problem? The reason I still, every so often, doubt myself? Ableism, medical gaslighting, and other forms of invalidation.

This was exemplified last week when I found out the doctor the county hired to review my records and talk to my friend and I (for all of two hours) reported back that I don’t qualify for I/DD support services because I’m not autistic.

!!!, to say the least. This seriously messed with, and is still messing with, my self image. Hell, my self esteem. I’d finally become able to attribute all those things about me that people wanted to change to my neurodivergence (and my gender and general queerness and etc) and thus accepted them as valid differences that were not all inherently negative. That is, these things I used to think were “wrong” with me don’t actually mean I’m a bad person, they just mean I’m autistic! I’d integrated it in to a positive self identity and built connections in the community that have profoundly improved my life. So why. The. Fuck. Was this doctor allowed to just negate all that and proclaim allism?

I freaked out when I got this news, and in some ways am continuing to freak out. I’ve had lovely Twitter friends reassuring me on all fronts, and I just keep trying to remind myself: 1) the system is designed to find any excuse possible to weed out applicants so they don’t have to pay for benefits, 2) multiple clinicians who have collectively known me for close to a decade agree that I’m autistic, and 3) philosophically I already value self-diagnosis and community recognition more than professional diagnosis anyway. (Clearly; as my history shows I didn’t accept my professional diagnosis until I personally came to agree with it.) So why let this random doctor mess with my head?

I don’t have a neat shiny way to wrap up this post because I’m not through processing yet. It is helping to have peers name what happened to me properly as gaslighting and to have their support. Mentally running through all the “proof” I’m autistic is perhaps helping a little – or perhaps just turning into circular obsessive rumination, I’m not sure yet. Group therapy today happened to be helpful (frankly this is not necessarily a common occurrence) – the curriculum was about self esteem, and the therapist pointed out, “just because someone says something about you doesn’t mean it’s true”. And I suppose writing this has been helpful, because it’s good to place what happened to me personally into the larger context of an ableist world that habitually invalidates autistic people at every turn.

I hope whoever’s reading this can’t relate, but I know how common the experience indeed is. So I will say, if you have had situations like this, please feel free to share in the comments below and I’ll listen. And everyone reading this, if you’re ever in a position to actually validate an autistic person and feel like you can probably do so in a helpful manner, please do it! We are autistic, we are worthwhile, our experiences do matter, we do deserve supports, and we’re surrounded by a world that makes us doubt those things – so please believe us and affirm us.

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2 thoughts on “Ableism and invalidation

  1. Though (luckily) I haven’t been told by a doctor that I’m not autistic, I have had all of those feelings as well! I was lucky enough to get diagnosed by someone who worked with autistic women and was able to validate my experience, and basically told me I’ve done my research and know what I’m talking about. I was also lucky enough to find enough resources that were by autistic women, and made me realize that I related to them, and I didn’t start with the DSM or any of that to begin with. If I did it may have ended up differently. But even after that validation, it took me many months, like you said, until I really talked to other autistic people online and was in the community, that I actually felt that validation.

    Funnily enough, as undiagnosed autistic people we end up getting told we are wrong most of our lives, so we just can’t trust ourselves instinctually or believe we are right, especially when we’re up against so much authority. It’s like getting told that an orange is an apple all of your life, even though you see it as an orange. Then, suddenly, 20-ish years later, someone looks at that object for a second, looks at you, and goes “oh yea, that’s an orange, not an apple.” Who are you going to believe, that one person, or the 100 other people who assumed it was an apple?

    Liked by 1 person

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