Who’s “In” and Who’s “Out” in the Autistic Community?

Posted: October 7th, 2016 | Author: | Filed under: Autism | Tags: , , , | 4 Comments »

There’s an ongoing “discussion” in the online community of autistic people about whether or not those who are only “self-diagnosed” (meaning they haven’t been able to obtain formal assessment, at least at the current point in time) should be included. It’s often expressed as a question about whether or not self-diagnosis is “valid”. Personally, I dislike the language of validity applied to an individual’s identity. We are all “valid” human beings. I’m also more confused by the fight itself than an active partisan for either “side” in the debate. I can’t discern why it seems to matter so much to some people.

VisualVox, the Aspie Under Your Radar, wrote a post on the issue and I left a rather lengthy comment. Upon reflection, I decided I might as well turn that comment into a post of my own. You probably will want to read her thoughts as well, since in places I do reference them.

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, you’re going to need the official paperwork to support your request. That’s just common sense. I’ll note, though, 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. And 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 obtain 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 (such as 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 operating from 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 the appropriate place to be. 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 (compassion deficit hyperactivity disorder) is a funny way to capture some of the reaction against self-diagnosed individuals. And a lack of compassion may be a part of it. Honestly, I don’t understand the fight response I’ve witnessed. In some cases, it seems that a person may have encountered some people online in the past who claimed an autistic self-diagnosis and were also jerks. I can see how they might end up lumping everyone with a self-diagnosis into the same pot if it happened 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 assessed themselves may be mistaken; our own lens is hardly free of bias and distortion. But that fact 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 today than I used to be.

But nothing in that process has any connection whatsoever to the official state of someone’s assessment and diagnosis. I’ve been trying to puzzle out the underlying issue. It just seems like such a strange thing to fight about.


4 Comments on “Who’s “In” and Who’s “Out” in the Autistic Community?”

  1. 1 mamautistic said at 1:52 pm on October 7th, 2016:

    I’m not a fan of the “not valid” terminology either. Not only does that phrasing invalidate an entire group of autists (primarily those who are already underprivileged in various ways that make seeking an official dx difficult or even impossible), but once I began asking and looking for clarifications from folks on that side, I found that it’s also not a particularly accurate representation of the “self-dx is not valid” position for many who are on that side.

    I’ve already written enough for a blog post about this topic, but I’m not sure when/if I’ll get it edited and clarified enough to actually post it.

    There are valid points on both sides and it’s a very personal topic which is why I believe it’s so volatile leading to the fighting.

    As someone who did pretty much everything right in the eyes of the self-dx is not valid side and who was eventually able to pursue an official dx, it’s not a personal topic to me and I’ve been able to understand both sides fairly well since getting clarifications.

    But I hate seeing people I care about be hurt by this fighting. I also personally prefer to err on the side of trusting people to know and accurately represent themselves than to possibly erroneously exclude anyone (especially those who tend to be underprivileged to begin with) from full participation.

    Maybe that’s unwise of me and I should be more cautious, but I like to think that most people are like me and won’t claim something unless they’ve been careful and meticulous about determining it. I’m also not terribly trustful of the medical establishment so I’m sure that plays into my perspective too 🙂

  2. 2 Scott said at 10:51 pm on October 7th, 2016:

    I had no problem getting an assessment, but I also recognize that I’m a white male with the necessary financial resources and I live in an urban area with professionals who understand autism in adults. I still don’t understand the fight. If someone has something helpful to share, what does it matter if they’ve had someone sign off officially on their mental state?

  3. 3 Looking back on 2016 ~ My personal Asperger’s / autistic blogging journey thus far… – the silent wave said at 6:25 pm on January 14th, 2017:

    […] Healthy Autist graciously published.  Another blog-writer (Scott over at Faith and Food) wrote his own piece that piggybacked on–and concurred with–HHA’s […]

  4. 4 Catana said at 11:59 am on March 5th, 2017:

    I’ve just started reading your autism posts after seeing your comment on The Silent Wave. What I’ve seen so far is very thoughtful and well-reasoned, and this particular post has inspired me to set up a new topic for my blog — on validation and self-identity. You said, “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 obtain it.” Not many, maybe, but some. Here’s my note for a future post: “The experience of living independently of any diagnosis or the need for “support,” along with the possession of a strong central identity can negate the desire for official validation.” Most people do lack a strong central identity and therefore reach for validation.

    It’s understandable, but I have to wonder how much the contemporary focus on diagnosis and support contribute to so many people on the spectrum making autism their actual identity and resenting any claims of self-diagnosis and lack of official validation. Outsiders are always perceived as potentially dangerous, and even a challenge to insiders. That’s true in all areas of life, and will probably always be responsible for arguments that can never be resolved to anyone’s satisfaction.