So … about that Asperger’s / autism self-diagnosis poll…

As many of you know (and are probably trying to forget right now–sorry about that), I set up a poll on both Twitter and Facebook, seeking information about whether self-diagnosis is valid and accepted by the rest of the autism spectrum community.  It was sparked both by a friendly-even-if-disagreeing discussion on Twitter, as well as several blog posts that argue different sides of the issue (listed at the bottom).

I finally found the time and have finally been able to digest the results of both and formulate some data and my own editorial on the subject.

I did my best to keep up yesterday.  I kept checking in and kept up with conversations and splinter conversations that took part across the world yesterday.  These conversations continued well through the night and even into the early morning.  Despite the fact that I got sleep (!) between all the keeping up, as well as the regular workload that I’m responsible for, I’m exhausted and thus, I’m sure my words will fail me.

But I’m going to try.  I’ll do my best.

(This is the first of what will probably be a two- or three-part blog post series.)

Here are some basic facts about the poll:

  • On Facebook, I posted only to a group of people on the spectrum.  It’s a closed group, and members have to be approved by the mods.  Thus, it was controlled somewhat, from going anywhere but to people on the spectrum.
  • On Twitter, it was open, as my tweets aren’t currently protected.  Thus, it could go anywhere and be answered by anyone.
  • On Facebook, the votes are not anonymous, whereas on Twitter, they are.  Even as the creator of the poll, I couldn’t see who voted which way on Twitter.  In a way, this is good, for it anonymizes the data and some may assert that it eliminates bias, since it was open to anyone and not only my personal followers.  In a way, it’s bad, because there’s no way to know that the poll didn’t end up in the hands of neurotypicals, biased professionals, or people who may not have even realized that it’s a poll about the autism spectrum only.
  • I created the two polls at roughly the same time, and the screenshots of the results (below; both are anonymized to remove any identifiable information and protect the privacy of all involved) were also taken at the same time, just after the Twitter poll closed/expired last night.
  • The Twitter poll was open for 24 hours before closing, and polls on Facebook don’t close, so it’s still going, although the numbers haven’t changed much since the screenshot was taken last night, and thus, it’s safe to say that it has run its course also.
  • For the record, I absolutely did not send any notifications, messages (PMs or DMs) or tag anyone to alert anyone to the existence of the poll or encourage any specific people to vote.  As much as I might have been tempted to point the poll out to certain “friendly” people and ensure that they saw it, I refrained from doing this in order to maintain some degree of integrity.

What surprised me the most (and a few others as well) was the difference in responses between the two polls.  Since the two social media platforms use different ways of reporting (percentage vs number of voters) and not all of us are avid number-philes, I’ll “translate” one reporting method into the other under each screenshot.

The Twitter Poll:

Here is a screenshot of the final results of the poll on Twitter (very shortly after closing):

poll-pic-twitter

This means that out of 209 votes:

  • 25 people thought that self-diagnosis was OK as long as it was an initial/first step towards official diagnosis.
  • 29 people thought that self-diagnosis was OK if it was done with care.
  • 56 people thought that self-diagnosis was fine, period.
  • 98 people thought that self-diagnosis is invalid, never OK.

The Facebook Poll:

By contrast, here is a screenshot of the Facebook poll:

poll-pic-facebook

There were a total of 49 votes in that poll.  This means that of those 49 votes:

  • 51% thought self-diagnosis was OK if done seriously/cautiously.
  • ~33% thought self-diagnosis was OK as long as it was an initial/first step towards official diagnosis.
  • 14% thought self-diagnosis was fine, period.
  • 2% thought that self-diagnosis is invalid, never OK.

So, to compare the results between the two in terms of percentage, here’s how it breaks down visually:

screen-shot-2016-10-06-at-5-13-59-pm

Some basic (“no-brainer”) observations…

Differences in the poll itself:

Although the spirit of the poll was the same between the two social media sites, the polls do have differences in verbiage, which may or may not have had any bearing on the huge divergence between the two.  I created the Twitter poll first (I think).  Thus, it ended up serving as a “rough draft” in terms of writing it, whereas I was able to think things through a bit more clearly in the few minutes between the setup of the two polls.  On Twitter, I was also very restricted in terms of the length (number of characters), not only for the introduction to the poll (i.e., the opening question posed), but also for each option.  Essentially, the brief choices you see in the Twitter poll screenshot pretty much “max out” the character allotment.  Thus, I did the best that I could do, but it wasn’t a wonderfully-worded poll.

Facebook, however, permitted me to type out much longer descriptions for not only the polls opening question, but also for each option.  Thus, I was able to express myself a bit more clearly.  I was able to include the word “accepted” in addition to “valid”.  I was able to include the word “seriously”, and spell out the word “cautiously” instead of merely “careful”, like I’d had to resort to on Twitter (due to the (lack of) length of the word).

Differences in social media platform population:

Obviously, the two social media platforms were totally different.  I’m not familiar with how the demographics compare and contrast between Facebook and Twitter, but I do know that the nature of each is different.  Facebook is a bit closer-knit, in that many users control their privacy more tightly, tend to be choosier about who they connect with, usually already personally know the people they connect with, and groups are more likely to be closed/restricted as well, with new members needing approval by administrators in order to join.

Twitter, on the other hand, is much more open; fewer people have decided to lock their tweets, people tweet more often and more freely, people tend to follow more often and more freely (which usually doesn’t require any action from the person you’re wanting to follow), and I haven’t yet seen any capability of forming groups (not to mention closed/restricted groups), other than forming personal haphazard “lists”.

Differences in specific poll audiences:

Audience size – There were huge differences in who could even view–and vote in–the poll.  The Facebook incarnation had a smaller audience, which provided more limited sample size than that of Twitter; anyone on Twitter at all could have seen–and voted in–the poll.

Audience neurotype – On Facebook, I created the poll in only one Asperger’s-related group.  (I won’t disclose the number of members, to protect the anonymity of the group.)  But suffice it to say that the group is large and active enough that the poll wasn’t a complete flop.  Members of the group are indeed strictly barred from sharing anything from the group such that it could be seen from outside the group.  The confidentiality is pretty strict.  Both self-diagnosed and officially-diagnosed members are welcome.  Members may tag other members within posts to the group wall, but all postings must stay within the confines of the group, without leaking out.

On Twitter, however, anyone could see, vote in, and share the poll.  This includes not only people “with” Asperger’s but also Autistic people (although many will argue that there is no difference, some people will argue that there is, and if that’s not muddy enough, different regions diagnose spectrum classifications differently, with some still using the Asperger’s distinction, while others don’t).  And although I didn’t tag or alert anyone else to the Twitter poll’s existence, other people may have done so, and I couldn’t prevent any allistic people from voting in what was supposed to be a spectrum-only poll.

Other poll audience characteristics – The Facebook poll was open to adults only, whereas the Twitter poll was uncontrolled.  On Facebook, the spirit of the poll was easily understood to be meant for only those on the spectrum, and the term “Self-Dx” was understood to refer only to the spectrum as well.   By contrast, on Twitter, viewers/voters could’ve assumed that “self-diagnosis” meant in general/anything (and self-diagnosis is hardly ever a good idea for the vast majority of health conditions).  There may have been other differences, too, such as:

  • Current age (which can sometimes dictate our value set, or whether or not Asperger’s diagnosis was even possible–which, for me, it wasn’t)
  • Age at diagnosis (and thus experiences with other Aspie/autistic people or self-described Aspie/autistic people–perhaps painful experiences with imposters/fakers, etc) (the “fakers” and “attention-seekers” will get their own post, trust me!)
  • Access to–or success with–services (influenced by income, insurance, nationalized healthcare systems, the very existence of the Asperger’s diagnosis itself, being lucky enough to find a great and astute professional who took initiative, or had parents who took initiative, region of residence and how forward-thinking or “backwater” it is, etc)
  • Culture (either family culture/values or the world-at-large; maybe “my family/state/country is more open about these things”)
  • Disability status (I’m not sure exactly how this would play a role either way, but a potential link/association or influence has been suggested by others; it’s possible that people who are against self-diagnosis may cling more to the disability aspect of Asperger’s/autism; perhaps they may feel more protective of their spectrum status, but that’s mere supposition and nothing more.)

Any one or combination of these factors may have theoretically come into play in some cases.

The Response Commentary From Others:

As painful, traumatic, and/or exhausting as some of the conversational exchanges may have been, in a way, the poll could be viewed in a positive light.  It does provide some sort of data (as unreliable as it may be) that does quantify the prevailing impression that self-diagnosis is “generally accepted”; it adds (at least some kind of) numerical data to that sentence.

I appreciate the perspectives from all parties to the conversations.  By and large, what I witnessed was mostly-respectful debate, as sharply as various individuals may have disagreed.  (It’s also possible that I missed some low-blows and personal attacks; I’m not sure.)  What I appreciated the most was the finding of common ground; a majority of people agreed that there are flaws inherent in the professional diagnostic process, including:

  • the lack of awareness/understanding of the presentation of Asperger’s/autism in females, adults, and especially adult females
  • a lack of resources (insurance or universal health coverage)
  • the coarseness and inadequacy of the diagnostic criteria themselves
  • the gender bias in the criteria and among professionals
  • the non-objectivity and fallacy among professionals

…and so on.  Most of us agreed that the system itself needs improvement.  Some ideas for solutions came up; those will likely get their own post as well.

More than a few people indicated that they were (unpleasantly) surprised (and understandably so) by the results.  Specifically, they were shocked to see that the “anti-self-diagnosis” answer had gotten so many votes (as was I).  They asked me “what happened??” and “this didn’t turn out at all like I expected”.

One person theorized that there might have been something like an “anti-self-Dx warrior cry at the very end” (which raised my eyebrows as it was unfolding, too).  Many were more than a little suspicious (again, as was I, although mildly so); some began to surmise that the poll had fallen into the hands of non-autistic people (whether self-assessed or officially-assessed), and this is very possible.

Some suggested that NTs (neurotypical people) such as doctors, therapists, counselors, other medical professionals, and possibly allistic (non-autistic) parents or other family members of autistic people had chimed in.  Of course, I have no way of controlling an open poll (although I requested that it be limited to autistic/Asperger’s people ourselves), and I have no way of knowing who voted how, or what their background is.

Of course, the poll sparked debate, which intensified at times.  It was kind of like a raging fire that threw off little sparks to the sides, which sometimes themselves ignited as well.  I’m glad to say that for the most part, the various parts of the debate that I witnessed were relatively civil; the words “agree to disagree” came up more than a few times.  And through it all, most of my connections with some people on the “opposite” side remained intact.  I’m happy that we’re mature enough for that, despite the hot-button emotion that can often flare up surrounding this topic.  (As for everyone that unfollowed me, well, that’s your loss, because I wouldn’t have unfollowed you; I’m grown up enough to agree to disagree, and I’ve blocked very few people and even then, it was only because they were being a dick.)

I was contacted by someone who said that they voted the last option “self-diagnosis never OK” by mistake.  Although that’s the only person I’m aware of, how many others might that have happened to?

Some Tidbits In My Analysis:

Remember that the way this poll was written, the “self-diagnosis OK” answer was split up into three different categories, whereas the “self-diagnosis NOT OK” answer was the only “anti-” option provided.  Thus, even on Twitter, over half (53%) are OK with self-diagnosis as at least an initial step, and 41% are perfectly fine with a self-identified Aspie/autistic person never seeking official/professional diagnosis.  (The 41% comes from adding 27% who say that self-diagnosis is valid, period; + 14% who say that it’s acceptable if done conscientiously.)

I’ve had time to assess the fallout, and I have some final thoughts…

  • The results of both polls were surprising to me (and to many others; I received more than a few messages, either public or DM, that expressed (unhappy/disappointed) shock).  I would have thought both to be somewhere between the two.  I would have thought that the Twitter results would look more like those of Facebook, except that I expected the self-dx-invalid camp to be slightly higher on Facebook than it was.
  • Although I am self-assessed (but please–before demonizing me, look at what I went through to arrive at this conclusion – here are detailed chronicles of my assessment process, as well as my process of elimination), I did my best to refrain from becoming TOO vocal about my own stance, although I admit that I probably wasn’t perfect.
  • I never asked a single person afterward how they voted; if they revealed it to me, I respect that–and I respected their opinion, no matter which way they voted–and I hope that I was successful in handling the information with dignity, and not abusing that information in any way or losing anyone’s trust.
  • Although I specifically stated that I was not trying to start a war/fight of any kind, wars apparently broke out anyway (silly me–I should have expected that) on Twitter.  To be fair to myself, though, a similar war did NOT break out on Facebook, so that might’ve been a Twitter user thing.  This resulted in some people being blocked by other people.  I realize that although I wasn’t the one doing the blocking, I played an inadvertent-but-instrumental role in creating discord between people; my poll was the catalyst for this bad blood and hurt feelings and I regret that deeply.
  • During the conversations that took place, I remained as civil and level-headed as possible, and I attempted to consider and understand all sides of the issue.  I did my best not to “play favorites”; of course, I identified and agree more with “my” side, but I tried to engage in conversation and find things to “like” about the “other side”, too.  The “other side” did make several excellent points, which will get got their own post.
  • I remain friends with people on both sides of the issue.  I am still connected with people who have blocked each other.  That is awkward in a way, and in another way I’m honored to have the variety–and those particular people–in my life.  For the record, I will absolutely not criticize anyone for blocking anyone else over this issue; I respect anyone’s decision to block–or remain friends with–anyone else.  I “judge” people based on their individual merit; the company they keep is a distant second, if it enters my mind at all.  I fully realize that some viewpoints and comments (from either side) can be traumatizing to others (again, on either side), and I’m not going to call someone petty or “too sensitive” for deciding not to interact with another person.  My gentle PSA (Public Service Announcement) is – I urge people not to mock others for blocking them; this is a form of bullying, in my opinion.  It smacks of bullying and the word “butthurt” comes to mind. 🙂
  • I’m pretty sure I lost some friends myself during that poll and those conversations, and I deeply regret that, too.  That wasn’t my intention, but I accept the consequences and I hope that in the end, everyone can heal.  On a happier note, I reunited with a few as well, and was very happy about that.

Some have commented that they left Facebook (in terms of Asperger’s/autism spectrum-related interaction) due to an excess of self-diagnosed people.  I surmise that it’s possible that those peoples’ experiences were different than mine.

Although no one has yet (to my knowledge) commented on the possibility of bias in the Facebook version of the poll (which had returned results that were much more pro-self-diagnosis), it’s interesting to note that I had run a separate poll (on Facebook only, and in the same group) a few days prior, in which I sought to collect data regarding how many were self-diagnosed, versus who had obtained official diagnosis.  Here is an anonymized screenshot of those results:

screen-shot-2016-10-07-at-6-29-43-pm

As you can see, 95 people responded.  Of those:

  • 42% are officially diagnosed (the most common answer/the largest group)
  • 28% began with self-diagnosis but have since obtained an official diagnosis (the second most common answer/largest group)
  • 22% are currently self-diagnosed only, but are indeed open to seeking an official diagnosis
  • 7% are self-diagnosed and have no current plans to seek an official diagnosis (the smallest group by far)

Although I haven’t run a similar poll on Twitter (and don’t currently plan to), I think that given that only 7% have no interest in formal diagnosis (which means that 93% are amenable to formal diagnosis and aren’t hostile to the idea, nor are they anti-medical-establishment), it’s safe to say that pro-self-diagnosis bias has not occurred on Facebook.  As one of a few dozen regular participants in that group, I’m comfortable making the educated guess that many of the people who responded to one poll, also probably responded to the other.

Other Reading/Resources (Those Blog Posts I Promised in the Beginning):

Adult ASD: Self-Diagnosis or Professional Diagnosis?” by Musings of an Aspie

Think You Might Have Asperger Syndrome?” by LifeOnTheSpectrum.net

Why the Self-Diagnosed Aspie Upsets Me” by The Girl With the Curly Hair – (the link provided directs to the archived site, because literally within the past week, the content has been locked down to subscribers–which I don’t fault her for, by the way.  Please–I’m not trying to take anything away from Alis/Curly Hair; the Internet Archive I used (AKA the Wayback Machine) is there for anyone and everyone to see and use.  I absolutely did not steal any content or circumvent her blog.  I do encourage everyone to visit her main site (link to her site) and subscribe to it or make any donation you deem appropriate!)

As I mentioned, there will be another one or maybe two posts on various other aspects/thought processing on the subject before I drop it altogether.  I’m not trying to beat a dead horse, stir the pot, trigger any traumatic events, or keep emotions flared up; I just have a several trains of thought on this issue, toward several different “groups”, so that’s the reason for the next post or two.

PS: Here they are…

The potential ‘Dark Side’ of Asperger’s/autism self-diagnosis (examining a subset of self-diagnosed Aspie/autistic people who are actually neurotypical, but have ulterior motives)

The post I’ve been holding out on: an open letter to the anti-self-diagnosis ‘elitists’ (calling out the exclusionary and hostile behavior of the more-militant, less-rational individuals on the “anti-self-diagnosis” side)

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18 Comments

  1. Gosh, I’m semi-offline a week and what happened?!!! My gut feeling is the big answer is further education, that the social model/neurodiversity model of disability offers more hope to us than does the medical model that suggests we’re broken and that we can, if they work hard enough, fix us. But the medical model is default and we Autistics like to be right. It takes a lot of work to show people that alternative options exist, and that self-diagnosis (acceptable under the social model) is possibly a way forward because it suggests a culture, not a condition. I’m glad you asked…means there’s a lot of education needing to be done no matter who took the survey, you know?

    Liked by 2 people

    1. Thank you for your insight! I’m with you–I love the “big answer” you gave. Seems to me that the real solution lies with serious update and overhaul regarding how Asperger’s/autism is perceived. I always get this visceral reaction to studies that start right off with “disorder”, etc (which pretty much all of them do). I think we’re in dire need of a paradigm shift and I do think it’s taking root, even if among just a small number of people right now 😊❤️

      Liked by 1 person

  2. I had to leave twitter. Too many abusive people for my fragile soul! Especially those who stridently are Actually autistic and think self dx is rubbish. I have a diagnosis! But they were brutal.

    Liked by 2 people

    1. I’m so very sorry that happened to you. 😞 Yeah there were some pretty cold behaviors. I’d hate to lose touch with you though; we’ll stay close on WordPress? ❤️💐

      Liked by 1 person

      1. Sure thing. I tried twitter because it felt useful to me to find a tribe. But I didn’t realise how fragmented that tribe was in itself! Or how twitter seems to offer people the right to be aggressive rude? Strange place. I’ll keeping reading your blog. 🙂

        Liked by 2 people

    1. You’re nice and to me, that’s all that counts. Please feel free to speak openly here any time! I appreciate your comments and I enjoy hearing from you 😊❤️

      Liked by 1 person

      1. I don’t think you’re pushy at all ❤️ I love your insight and genuinely value what you have to say 😊😊

        Like

    1. Holy cow I can’t believe this slipped by! Sorry about that! 💐 A (very belated but very big) thank you for reblogging ❤️

      Liked by 1 person

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