So, there it is – an #autism diagnosis at last

woman pulling medical records off a shelf filled with folders
Just because there’s no official record of our condition, doesn’t mean it doesn’t exist

It’s been a long time coming — 18 years, give or take. Or, more accurately, 18 years, 6 months, and 26 days.

I got my assessment confirmation letter via email last night. The outcome? My profile of abilities and spiky profile can best be explained with a DSM-V diagnosis of Autism Spectrum Disorder (Level 1 – Subtype is Asperger Syndrome)

I’m ignoring the “Disorder” piece of it, as well as the Level 1. That’s just a formality, based on the DSM-V, which most people agree could use a tune-up with regards to autism. Some folks (me included) think that the autism spectrum shouldn’t even be included — just like homosexuality, which was classified as a mental illness within my lifetime. It’s only been “off the books” for about 43 years — considering all the pain and suffering it caused, which still affects people’s lives, that’s not a long time.

Anyway, I’m no more autistic now, than I was before this official evaluation. I’m no more autistic now, than I was before I came across Asperger’s Syndrome in 1998. And I’m no more right about being autistic, than I was prior to this official pronouncement.

But at least, this is one last argument I have to have with others (including a number of autistic folks) who insist — insist! — that you can’t call yourself autistic without an official diagnosis. That seems illogical to me. Autism as a personality type doesn’t manifest or cease to exist, based on the pronouncements of a PhD. The difficulties are real, regardless. The strengths are every bit as strong. And for the record, none of the diagnosticians who named this condition invented it — not even Hans Asperger. They simply recognized it. Documented it. Made careers out of it.

We, on the other hand, have been living it.

If your autism affects your life, but no certified professional can hear the sound of it or recognize the sight, it in fact still exists.

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15 thoughts on “So, there it is – an #autism diagnosis at last

  1. This field was intentionally left blank

    Wow!! Clapping and cheering, for several reasons. First, congrats on your diagnosis; I imagine it brings a sort of confirmation and relief? Second, I completely agree with what you said about the diagnosis not spontaneously appearing or disappearing by the pronouncement of a PhD. (After all, it’s not like they have a magic wand or something.) Love this post! 🙂

    Liked by 1 person

  2. Congratulations? Not really sure we have an appropriate positive way to acknowledge a milestone marker like this, but then I’m still pretty new to it. I only had to wait a few months between the time ‘autism’ seriously hit my radar as more than a passing thought and my formal diagnosis. But even over that period of time I was tormented by niggling doubt. I couldn’t stop the voice in my head telling me I had to be mistaken. It actually intensified between assessment and results. I can’t imagine living in that limbo for 18 years. Even though it doesn’t change a thing, it has to be something of a relief. (And now I have a certain Fiddler on the Roof song looping in my head.)

    With that said, I’m not sure I agree that homosexuality and autism form a good parallel when discussing the DSM. I’m hardly an apologist for the DSM. It has had and continues to have many issues. Despite its flaws, though, it is fundamentally a tool intended to help identify where support, treatment, or other interventions are required and a framework within which to provide them.

    Homosexuality was improperly included because the only ‘support’ really required was a societal change to stop marginalization. We still have a long way to go, but have made progress. And removing it from the DSM was certainly a major step in that direction.

    Autism strikes me as markedly different. To one degree or another, we actually do need accommodation and support. I say that as someone who, to an external observer, has probably done pretty well. I’ve managed life, overcome missteps and collapses, and managed to negotiate some accommodations (without using that term) along the way. Some of that has been pure straight, white male privilege. A lot of it has been simple luck. There are many points where things could have gone very differently. I wouldn’t have sought assessment and diagnosis if I didn’t feel like I actually needed assistance. The DSM provides a framework for identifying and obtaining the right sort of assistance. And if I do ever need formal accommodation, it provides the legal basis.

    Are those processes and systems deeply flawed and full of holes? Sure. But even if we could magically fix all those flaws in an instant, we would still need some sort of system and framework in place. I see the accommodations my daughter is able to access for her needs at college, and even though they are very different from my issues, I can see how such things could have helped me a lot.

    I’m not fond of trying to draw parallels, since any parallel is inevitably limited and can easily lead to false conclusions, but my initial thought when reading your post was that transgender individuals might provide a better comparison than homosexuality. I’m not going to try to defend either the DSM or the way it often applied. If anything, it strike me as even worse than some of the stories I’ve read from autistic people. They tried to improve the diagnosis in DSM V, but there are still tons of issues.

    Even given all those flaws in the process and mechanisms, many transgender people endure it because they do need some degree of support. And that’s the framework available to access the care they need.

    Given that there is always going to have be some sort of medical and legal framework through which autistic people access needed care and accommodation, we might as well focus on improving the one we have, with all its warts, rather than try to create a new one from scratch. From what I can tell, we don’t have much in place right now and what does exist tends to be scattered and of varying quality. Trying to create a new medical and legal framework instead of building on the existing skeleton seems … quixotic to me.

    I will agree that ‘disorder’ is a loaded word and not the best fit in the context of autism. I’ve seen ‘condition’ suggested. While semantically similar in meaning, it is less charged.

    Thanks for sharing your writing. I really enjoy reading your posts.

    Liked by 1 person

    1. VisualVox

      You make a lot of good points – esp regarding homosexuality. The thing about autism is that while it’s not inherently disabling (depending on the severity, environmental considerations, and a host of other factors), it can fit very nicely into a DSM-ish diagnosis. The comparison between autism and sexuality is more in the social domain, I think. While the DSM may be intended as a framework to provide services, its categorizations can still be used to intentionally marginalize groups of people and justify discrimination, as well as regarding them as “less than”. Certain people get the distinctions you call out, however broader society has a knack for using professionals (esp mental health professionals) to validate biases and justify things like eugenics, subjecting gay people to all manner of “treatments” which are in fact punishments. Shock therapy and institutionalization have long been a “cure” for being gay — similar to autism. So, while I agree with your point on the purpose of the DSM, in practice, there are a lot of parallels between autistic and gay people being punished under the guise of “helping” them, because they both “suffer from mental illness”. Love the sinner, hate the sin. Cure the sickness to save the sick one.

      I’m not sure I follow your mention of creating a new medical and legal framework? Legally, that’s not very likely, as the law is so precedent-based. And medicine has a constant work-in-progress, anyway.

      Re: condition vs. disorder – someone recently said they consider a condition an inherent … condition, whereas a disorder is something that happens as a result of something (personality disorder emerging after trauma, for example). If autism is considered genetic and an inborn set of traits, then condition. If it’s the result of something like toxic shock to the system, and only emerges after a period of perceived normal development, then it’s a disorder. She took the standpoint (as do I) that it’s genetic and a normal human variation. Of course, there are very disabling aspects to it for many, many people, so … yeah, complicated. Of course it is!

      Thanks for your thoughts. I appreciate your considered approach.

      Liked by 1 person

      1. Sorry. I’m sure my thoughts were garbled by trying to respond piecemeal between other tasks and by using my phone to do so.

        My comments about new legal or medical framework were a reaction to the comment about removing autism from the DSM. Since that’s the existing framework and many autistic people do require access to care and/or accommodation, the DSM based framework would have to be replaced by something. Simply removing it would be worse than the status quo. Hopefully that’s a little clearer.

        Hmmm. In disorder vs. condition I looked up what they mean in medical writing. It definitely looks like condition is the more technically accurate term.

        Liked by 1 person

      2. VisualVox

        Oh, right – there’s that. Yes, now I understand. Yeah, removing that would remove the recourse that a lot of people have to help. And perhaps it makes sense to leave it in, as there’s never any telling just when we’re actually going to need accommodations. And in my mind, it segues well with the concept of a condition — as in a chronic condition that needs to be managed… much as I dislike referring to autism in the same way I would a chronic illness. 😦

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      3. I’ve been mulling your comment about referring to autism in terms similar to a chronic illness. I happen to have a chronic, incurable, but largely ‘invisible’ condition, celiac disease, that has to be managed. I have to be constantly aware and monitoring an aspect of my environment. I have to continually speak up, disclose, and seek accommodation in situations involving food. (I’m sure you can imagine how much fun that’s been for an undiagnosed autistic. I’ve frequently hidden behind a beverage and just not eaten anything because it was easier.)

        I haven’t really thought it through, but I can see some parallels. There are certainly aspects of being autistic that require ongoing management and awareness, even if you don’t know that’s what you’re doing. As noted above, I’ve even had to balance the two, going without food altogether when I hadn’t prepared in advance and the costs of trying to negotiate something on the fly were overwhelming.

        Of course, the parallels break down if you press too hard, but I do see some similarity. I’ll have to think about it more.

        Liked by 1 person

      4. VisualVox

        I am a little familiar with CD – it does complicate things. I don’t drink, myself, so I have to constantly monitor that, as well. It’s very tough when you’re on the spectrum and have to navigate all the social situations where people just assume you can eat/drink whatever they’re serving. It’s “fraught” with difficulty, that’s for sure. And not sticking with the program can be real trouble. Not so different from autism, in my experience. So many similar assumptions, that you can just do whatever, function however, and have this standard-issue life… and then navigating the negotiations around “well, not exactly…”

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  3. Congratulations once again, and yes, I agree with so much of what you say here. For me, official diagnosis has been really important for a number of practical reasons. But I dislike it intensely when people criticise those who are self-diagnosed.

    For one thing, access to assessment is dependent on a certain number of privileges. Many will never be able to get that formal, official clarity.

    For another, if you’re demonstrating the kind of deep insight you (before and after DX) and others such as Silent Wave demonstrate, it’s clear you’ve done your research, reflected deeply, and thought long and hard – a self-diagnosis of autism is NOT something someone adopts lightly. Doing the research itself implies intense interest, perseverance, attention to detail, and many other traits which, as we know, are textbook Aspie!

    And knowing ourselves is something we’re experts at!

    Liked by 1 person

    1. VisualVox

      Thanks!

      I agree – I think that one of the things that derails the perceptions of self-DX, is the cadre of individuals who find autism a useful way to explain/excuse anti-social traits. That contingent seems to be fairly vocal in its own corner of the world — one which I’ve never encountered. It may happen online a fair amount? Not sure… Anyway, I think with mature adults especially, self-DX should be respected for the reasons you called out. There are so many who really struggle with things, and it’s so, so helpful to have a “meta-pattern” to understand everything, to put things into some sort of meaningful context, when so much is so confusing and really debilitating.

      Interestingly, I’ve usually heard objections to self-DX coming from men. Now and then, a woman will protest, but the really “hard-line” deniers of self-DX are male and very firm about it. I wonder if maybe there are more men who take advantage of the Aspie label… or men somehow expect people to take advantage? I’m generalizing, of course, and it’s unfair, of course. I’m just trying to tease out patterns to make sense of it.

      Thanks again for your thoughts. It’s rainy and grey here, but it feels like a beautiful day 🙂

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