Who belongs? Who doesn’t? And why?

line of smilies one sad face
Who gets to belong? Who doesn’t? Who decides? Who’s “really autistic”? Who gets to say?

There’s been a bit of back-and-forth tweeting going on about whether self-diagnosis of autism is valid. There are strong opinions on every side. I have my own opinions, which I’m going to leave out of here, because I actually want to dig a little deeper than my own personal frame of mind, to consider this issue.

From where I’m standing, it’s important to understand why people believe what they believe? What do they have to gain from their opinions? What do they have to lose, if their opinions are not “in force” in a given situation? What’s at stake for people, as autistics or parents of autistics? And why do they feel so strongly about the issue?

It’s a complex subject, and emotions run high.

And I think it would be really useful to gather some data on who believes what they believe — and why.

As much as we may talk about these things, I’d love to have some more listening. As people promote their own points of view, I’m not hearing as much compassion as I’d like — it’s almost like there’s a sort of CDHD (Compassion Deficit Hyperactivity Disorder) going on… where people who feel like they have a lot to lose, are shifting into high gear, trying to shut down the other side. At times, it feels a bit aggressive to me. But I understand there’s a ton of passion behind these points of view, so of course it’s going to get heated.

Anyway, the autistic community is anything but boring… and we’re always changing. And as with any community, deciding who doesn’t belong is every bit as important as deciding who does.

It would be nice if some of this didn’t sting as much as it does, but we can all take things whatever way we like. Nobody’s forcing us to listen to anyone else. No one’s forcing us to believe them. Or even take them seriously. We can all make up our own minds. And maybe someday we will…

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8 thoughts on “Who belongs? Who doesn’t? And why?

  1. humblelionessx

    I see this topic flying about on twitter all the time. Although I do believe self dx is valid, in my opinion I would feel a little uncomfortable broadcasting it without an proper diagnosis seeing as it can easily be mistaken for something else. I also don’t think anyone really has the right to actually tell someone where they do/don’t belong.
    If they strongly feel that they do even if they don’t belong that’s their business. Although I think people who are self dx need to be a bit realistic in what to expect from others especially NT’s…If you should go to buy something & need to return it without a receipt how is anyone able to assist you without proof?…Same if you end up in court, or in hospital no one is just going to believe you because it’s your word especially if they don’t know you. Basically if you’re self dx tell who you need to, those who love you will love you, but expect that there’s going to be a few who won’t take you seriously.

    Liked by 5 people

    1. VisualVox

      I was self-DXed long before I was officially DXed, and the official version didn’t change anything for me — except that now it’s impossible for me to write things off as “just one of those things”. Now it’s A Thing, that I can’t avoid. The whole point of self-DX for me is that it allows us to manage our own issues. If you’re going out into the world looking for special accommodations and treatment, you need an official DX to get access or accommodations. That’s a given, with me. But if you need no accommodations or access that’s different from standard issue stuff, then no official DX is necessary, in my opinion. Just for the sake of understanding yourself and managing your own situation, no doctor needs to tell you what’s going on with you — and a lot of them aren’t qualified or equipped to do that, anyway.

      Keep in mind, that a number of very prominent autistic women who have written a lot of great things and have helped a lot of other autistic folks, were never officially diagnosed. And yet, they have done a lot of good for a lot of people.

      Liked by 2 people

  2. This field was intentionally left blank

    Bravo!! I love your term CDHD. I’ve noticed that phenomenon, too, but your term expresses it so beautifully. I love your opening questions, too. Aw heck–I love this whole post 😊

    Liked by 1 person

  3. I’m pretty sure everyone agrees that if you’re going to seek any sort of official support, accommodation, or anything else from the larger NT world for your autistic needs using that as the basis, you’re going to need the official paperwork to support your request. That’s just common sense. I’ll note that it’s possible to negotiate unofficial accommodation. Looking back, I did that for decades at work as an undiagnosed autistic. I would frame it in terms of whether or not something in my environment was interfering with my ability to produce at an extremely high level and ask to have it adjusted. Since the people I worked for always thought it was in their own self-interest for me to keep doing what I was doing, even if they didn’t understand it, they were generally happy to accommodate my ‘quirks’.

    But nobody with a ‘self-diagnosis’ is going to be looking for any official accommodation, anyway, since they will obviously know the above. In most cases, my assumption would be that they are trying to understand why they struggle in certain ways and contexts and why they appear to interact with the world around them differently from most other people. And they may be looking for ways to ease or at least better manage their struggles. In order to do so, they are reaching out to the online community because, honestly, where else could any of us have turned? I certainly didn’t have any other ready avenue for learning ways to cope with aspects of being autistic even once I was formally diagnosed. I needed the information from those online sources to even confirm in my own mind that I needed to seek an assessment.

    So I understand what at least most people with a self-diagnosis are doing and it strikes me as perfectly reasonable. Where else are they going to turn if not to the online community? And given the barriers to assessment and diagnosis in different parts of the world and the high bar gender, race, class, and finances can create even in locations where assessment may be available, official diagnosis may not be an option even for people who want it. And honestly, it’s hard for me to imagine that there are many people who wouldn’t want some sort of official validation and confirmation if they could get it. I know I was going back and forth in my own mind beforehand. Even on the drive to discuss the results, I was trying to work out what I would do if she told me I wasn’t autistic. And I masked so well (automatically and unconsciously) even during the assessment process that if neurological results (such as the 30 point split in my two core “intelligence” scores) and childhood history (constant spinning and pacing and complete meltdowns eventually requiring psychiatric intervention when anything at all in my room had been moved) hadn’t clearly shown autism, I might have ended up with the new social communication disorder diagnosis instead. Since then, I’ve been able to peel back the masking and coping behaviors and find a lot more evidence for the Section B criteria.

    So, given all that, I’ve been bemused by the vehement reactions in some corners of the online autistic community against those who are working from their own self-diagnosis. I can’t see any way those who are working with a self-diagnosis are harming, threatening, or taking anything from those of us with official diagnoses. The online community is an unofficial place to provide and receive information, advice, and support. If someone needs or can provide that, it’s a place to turn. Nobody’s personal story is invalid and it’s impossible to know who will be helped by it if you choose to share it. And in many ways, a self diagnosis is exactly that. It’s a personal story marking their current place in their journey. Honestly, an official diagnosis doesn’t really change that fact. Ultimately, I only have my story to share. Some people may find it helpful. Others won’t. And that’s okay. We aren’t all cut from the same cookie cutter mold.

    CDHD is a funny way to capture that reaction. And that may be a part of it. Honestly, I don’t understand the fight response. In some cases, it seems that a person may have encountered some people online who claimed a self-diagnosis and were also jerks. I can see how you might end up lumping those into the same pot if it happens multiple times or was particularly painful. Of course, there’s no real relationship between the two. All sorts of people in every category can be jerks. Heck, even otherwise helpful and generally nice people can have a bad day and come across as a jerk or even actually be a jerk. (Usually, if you aren’t a thoroughgoing jerk, you’ll recognize your jerkiness later and apologize for it.)

    Other than that, though, I’ve been unable to discern what’s triggering the fight reflex for some people. Someone who has just assessed themselves may be mistaken, but that doesn’t harm or threaten me. Moreover, I have no way of knowing whether or not someone has been officially diagnosed unless they choose to share that information. It’s an unreliable mechanism for determining who you will read or interact with. The better gauge, and the one I’ve used in all situations, is simply assessing what they have to say and how they choose to say it. If I find it interesting or helpful, then it’s interesting or helpful. If I don’t find it interesting or helpful, I’ll look elsewhere. But that doesn’t mean that someone else might not find interacting with them helpful. If they are abusive, I will screen them out. I’ve been abused enough in my life. I don’t need to let abusive people in at this point and I’m much better at managing that aspect.

    But none of that has any connection whatsoever to the official state of their assessment and diagnosis. I’ve been trying to puzzle it out and it just seems like such a strange thing to fight about.

    Liked by 2 people

  4. Pingback: Who’s “In” and Who’s “Out” in the Autistic Community?

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