Self-diagnosis on the Asperger’s / autism spectrum: Yay or nay?

I’ve mentioned before that there’s a wave of people, beginning to bloom into the flowers they were meant to be, discovering who they truly are and how they really “roll”.  Discovering why they do what they do, feel what they feel, think how/what they think.  Discovering that they’re Aspie/autistic people after all and “wow–so this is how it looks/feels like to be on the spectrum.”

Once you begin to suspect that you might be, however…then what?

Go for a diagnosis?  Get assessed or evaluated?

Self-diagnose?  Do one’s own research?

We often find ourselves frozen, in case of “paralysis by analysis”.

I fought with myself about whether or not I should seek an actual “official” diagnosis.  There seemed to be pros and cons to both options, and I struggled with the confusion.  I asked for opinions.  Of course, they varied, too.  These varying opinions outlined both options more clearly, but I can’t recall that they helped my decision (maybe they did; I’m not sure).

Here are the viewpoints from each side:

“Yay” – Self-Diagnosing Is Fine / It’s valid and legitimate:

It’s well-accepted in the Aspie/autistic community to be self-diagnosed.  This is because we tend to be extremely familiar with ourselves, knowing ourselves better than anyone else possibly could.  There are plenty of online questionnaires and self-assessments one can take, and symptom/characteristic/trait lists that delve into the multiple aspects of the spectrum.  When we take the online questionnaires and compare ourselves to the symptom lists, we frequently find ourselves nodding in agreement (and often, relief!).  Because we know ourselves so well, we can be trusted to answer the quiz questions honestly/realistically, and to recognize the characteristics on those checklists that fit us.

Since we keep so much inside ourselves, other people may not have noticed these traits or thought processes, and thus a diagnosis by a licensed professional might be difficult because we may not outwardly or obviously display those characteristics.

…Which is another reason that self-diagnosis is usually so well-accepted: we may not have any other realistic options.  Getting an “official” diagnosis may be much easier said than done.  Up-to-date information about how Asperger’s/autism truly looks in individuals is limited.  Aspie/autistic people are a diverse lot, with plenty of variation among us.  (There’s as much variation within the spectrum community as there is in the non-spectrum population!)  We often get missed if we don’t fit exactly into the rigid (semi-outdated) mould.

There’s also anxiety involving going for a diagnosis.  Traveling to an office or clinic.  Being seen and evaluated by a stranger.  Interacting with staff and other people in the waiting room.  Waiting for the licensed professional.  Feeling the pressure to act “social” (because we’re out in public, after all, and many times our abilities to mask and mimic kick in, hard and automatically) is often juxtaposed with the self-reminder to act “natural” (the way we usually do when no one is looking) so that the characteristics we otherwise try so hard to hide around others can actually come through and be seen.

Then there’s the risk of receiving the wrong diagnosis altogether.  I’ve heard too many sad stories of people seeking help from those who are supposed to be trained professional experts, only to be told that it’s “just depression”, “just anxiety”, “bipolar disorder”, “obsessive-compulsive disorder”, or “adult ADHD”.  (“Oh, and here’s your anti-depressant/anti-anxiety medication.”)  And yet, there’s this crater left inside of us.  We want to shout, “no, you dimwit!  That’s not the right answer.  There’s more to the story!  There’s something else going on!”  What’s worse is, these labels, once slapped on us, are difficult to undo or remove.

People in the US have a tougher time still.  In the still-rare event that the professional would have recognized Asperger’s, that term has been removed from the DSM-V altogether, an favor of the cloudier, murkier, more-confusing “autism spectrum”, a catch-all umbrella under which Americans are now all lumped together (despite the fact that Asperger’s has some fundamental differences from the rest of the spectrum, which is something I’ll write about in a future post).

Don’t even get me started on the cost involved with evaluation…

And then, there are the ramifications or consequences that (for some) may come with being officially diagnosed.  The stigma.  The “disability” mantra.  The fear.  The hype.  The assumptions.  The well-meaning-but-misplaced-sympathy from others (that we don’t necessarily need).  The idea that we’re “broken”.  Getting written off as “defective” and then not getting taken seriously.  The credibility we often lose in an instant, even if we had peoples’ solid trust before.   Self-diagnosis, on the other hand, isn’t quite such a psychological door-slam.  It maintains your privacy and your rights.  It’s not documented anywhere.  It’s not on record.  Nobody has to know unless you tell them.  You never have to worry about who has access to your records, or where else those records may travel and whose eyes may see it.  You never have to worry about whether or not it may prevent you from exercising certain rights, now or in the future.  Nobody can force you to undergo sterilization, for example, or prevent you from speaking or getting a job.  Sometimes it’s hard to know what the consequences might be so far in advance.  This is especially true in the case of getting a wrong diagnosis that it’s nearly impossible to correct.

“Nay” – Self-Diagnosis Isn’t Enough; Only an Official One Counts / You Must Be Official To Truly Feel Validated:

This may be true for some.  I’ve heard plenty of miracle stories, too, about how an official medical diagnosis changed a person’s life and helped them feel more “legit”.  It actually REDUCED their anxiety.  They no longer had to worry.  They no longer had to theorize.  They were told “yep, you’re on the spectrum” and it made them feel validated, which is a rare and much-craved feeling among those of us on the spectrum.

Depending on the country/region you live in, receiving an official diagnosis may help you qualify for certain services, assistance, or support.  With an official diagnosis, you might fall under a “protected class” when it comes to obtaining employment.  If you’re unable to work, you may qualify for financial public assistance or other programs.  You may be able to utilize support measures such as service dogs or be allowed certain exceptions to other rules, and having an exception made for you may be very helpful in your everyday life.

Some people feel pressured to obtain an official diagnosis because someone in their lives (such as family members, teachers, coworkers or supervisors, or even friends) may not “believe” them or take them seriously.  Getting an official diagnosis turns “I think I may be…” into “I know I am…”, and adds confidence and certainty where it may be needed.  The skeptical person/people in the spectrum-person’s life may still be skeptical, but at least they look that much more ignorant because they’re going against an official medical opinion.  It gives the person on the spectrum some supportive firepower.

Some people of the Aspie/autistic community may also encourage the seeking of an official diagnosis for another reason: there are some people who may start to claim that they’re on the spectrum because spectrum conditions are becoming more common, and it may seem to be an “en vogue” thing to “have”.  Some people are simply antisocial (for other reasons) or may feel that they lack empathy (also for other reasons) and may be looking for a socially-acceptable reason (excuse) for their (real or imagined) character flaws.  Others are bored with themselves and may feel the need to reinvent themselves by attempting to make themselves appear more “interesting” to others.

The people mentioned in the previous paragraph probably are NOT genuinely or truly Aspie/autistic people.

But if they go around claiming that they are, when they actually are not, their obnoxious behavior and their constant publicizing of said behavior might steal credibility away from legitimate Aspie/autistic people.  It may make us look like jackholes, drama kings/queens, attention-seekers, hypochondriacs, or otherwise all-around nut-jobs.  Which, needless to say, we’re not.  It’s simply that they’re imposters.

So…Now What?

Getting an “official” diagnosis could be helpful, harmful, or both.  Sometimes, the decision to seek an official diagnosis or self-diagnose is clear.  For others, it may require some deep thought and a lot of back-and-forth tug-of-wars with yourself to reach a decision.  This is a decision that needs to be made carefully, and not one to take lightly.

In the end, the truth is that there’s no “right” answer overall–just what the Right answer is for You.  As the cliche goes, “everyone is different” and what is comfortable or makes sense for one may prove to be disastrous for another.  Each individual’s needs and circumstances are different.  We live in different regions, with different levels of awareness, support, prejudices (or not), etc.  Our age and employment status varies, and thus, so does our need for the support options that may be available.  We may deal with differing qualities of life.  We have different living situations.  We deal with different friends and family members, some of which are open, accepting, and supportive, while others aren’t.

Personally, I have–at least for the time being–decided to remain self-diagnosed.  This is for several reasons.

First, I’ve done an incredible amount of research into the topic, starting with little intuitive stirrings and then beginning in earnest with contemporary questionnaires, official diagnostic criteria, and specific research into characteristics in females, both children and adults, and finally, continuing with reading the blogs written by women on the spectrum that provided beautiful, eloquent firsthand perspectives.

And I had found myself nodding and tearing up with every single one.  I was confident that I had found my answer.

Second, I’ve made it this long already, having been with my marriage partner for 17 years now, and having (finally) completed school and started 2 private healthcare practices.  I live in the US, where support is extremely limited.  Luckily, I have not needed much support.  I get the few accommodations I need through unofficial channels, and I haven’t yet had a problem.

So, I’m okay with self-diagnosis.  I have read in passing that about 70% of us are, so if you choose to remain self-diagnosed, you won’t be alone.  There’s no way that I know of to “undo” an official diagnosis if I realize it was a mistake (for me), but being self-diagnosed, I can always decide later to be evaluated for an official diagnosis if I choose.  Right now, for me, the door is open and the slate is “clean”.

But that was just my own answer to the dilemma.  Yours may not be the same as mine.  And that’s perfectly okay.  We’re all legit.  🙂

***

(Image Credit: “And Justice For All” by DJVue)

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21 Comments

  1. Hi SW…
    Well written post, clear and helpful for anyone being honest about themselves, looking into ways to be “legit” first of all in their own eyes, which helps consciously seeking for ways to live fuller lives, managing day to day tasks in a more meaningful way, without any more hurt to themselves and others.
    In my case, I had to go down the “official” road, first of all because as I grow older, my specifics have gone over the “hiding between the lines” limit, causing repeated and visible trouble/distress to myself and others. My professional status, and also my career development (ironically mental health…) requires clarity in matters of interaction, in order to avoid unnecessary, conflictual situations. I have been therefore referred and awaiting on the relevant services to line me up for the whole assessment. Meanwhile I seem to be (hopefully…) lucky to have some support from my professional environment, which makes waiting less stressful.
    Nevertheless, I am not naive (or rather I am less naive…) and started writing down everything I feel I MUST discuss when time has come, just to make sure I’m not caught in my usual extreme confusion, typical when I seek medical advice. I have printed out and neatly organised a folder with all relevant current legislation, as I am determined NOT to let myself bullied away from a fair, thorough and clinically correct evaluation and diagnosis, like it’s been done with my diabetes, to the point where I started to shut down and have numb toes…
    I have also written down a script to follow, with HOW I want things to be done and what are MY RIGHTS (and they are many, and all available) through the process. I am also fortunate to be studying exactly these subjects for my current degree, and have some support from some of my lecturers who have noticed my spectrum specifics and voiced them even before I ever mentioned them.
    I am sorry to be so lengthy every time I write, but this is exactly how my mind organizes every task ahead.
    Thanks again for the excellent insight, it really helps fill in so many important gaps, at least for my humble self.

    Liked by 4 people

    1. Thank you for sharing your story! No worries about length of comments; I LOVE reading your writing and I’m humbled and honored when awesome people share their thoughts with me 🙂 I wish you the best of luck and I hope everything turns out the way that’s best for you. I hope you find and get everything you need. I’m so proud of you, girl 🙂

      Liked by 1 person

    1. Oops!! Sorry about that . You’re not alone; sometimes people think I’m a guy (in writing) even though I’m a female. lol. 🙂 ❤

      Liked by 1 person

  2. Fantastic post. I’m on the waiting list for an NHS (UK) assessment, which could have a wait of up to a year since referral (my Dr made mine in April this year). For me, there are two reasons for official diagnosis:

    1) Work. I’m fortunate to be working in highly accepting organisation (universities tend to have lots of Aspie/autie employees!) that us already very understanding towards me – though I’m not officially diagnosed, my meltdowns, which colleagues have made complaints about in the past, have been treated as a stress/occupational health issue rather than (as in previous jobs) a disciplinary one. I was fired from one temp job shortly after finishing my degree because of disruptive behaviour. I’ve had verbL warnings in others. I’m in a lucky position right now – around half the people in the team I work in know I’m seeking diagnosis (including my supervisor/line manager), and those that don’t are familiar with, and tolerant towards, my many quirks, but an official diagnosis would legally protect me, and help me get better access to adjustments, support and so on. It might also help in the future with me making a case to drop my work hours – I currently work full-time as I’m the sole breadwinner for my family (my husband is the homemaker/stay-at-home-dad), so have no choice but to do so, but I find it INCREDIBLY demanding mentally, sensorily, and emotionally to do so. My employer would be much more receptive to a change in work patterns (once our household circumstances allow me to do this) were there an established, documented medical reason.

    2) I just like being ‘legit’! I suffer from an inferiority complex because I’m the only one of three education developers in the department who doesn’t have a PhD, I’m going to be the last to get senior fellowship of the Higher Education Academy ( I have fellowship, but not senior, and my silly brain likes to conveniently ignore the fact I’ve only recently returned to work after having my second baby!). I’m an excellent teacher, as I know from all the great feedback I get, but I also like the fact I have a formal teaching qualification. I know I have all the requisite skills to do my job super-well (when I’m not overloaded, that is), but there is, for me, and many of the people in the circles I work in, an additional credibility to be obtained from having things in writing.

    Having said all this, I’m far happier with self-diagnosis since I started blogging. Getting down my thoughts in writing is helping me to recognise how well I understand myself now. And I get so much value and validation from reading others’ words and realising I’m not quite the alien freak I used to think I was. I’m very good at researching and documenting evidence, so I no longer have any doubt that I am autistic (and I’m going to say Aspie despite the fact my local service provider adheres to DSM-5). I’m happy to say I’m autistic, and proud to identify positively in this way, but for practical reasons I feel an official diagnosis would be useful.

    Sorry for such a long comment!

    Liked by 4 people

    1. Thank you so much for sharing your perspective! No apologies necessary; I love hearing from others! 🙂 Congratulations on your courage for going forth and taking the evaluation “plunge”. I hope that it turns out very well for you and that you get any help and support that you need. You’re amazing!

      Liked by 2 people

      1. Thank you for saying so! 😊 I’ve come to a bit of self-realisation, and although I’m sure I’ll still suffer the odd crisis of confidence, I feel able to remind myself how much I’ve actually achieved to get where I’m at despite all those invisible inner struggles. But it would be useful to know for definite!

        Liked by 2 people

    2. Hey LA, thanks a lot for sharing, most of your thoughts echo mine, just one difference, I work in the NHS, but reasons absolutely similar, also my wife is at home 🙂
      I’ve been referred by end of May if I remember correctly, so you may be ahead of me :-):-)
      Keep me/us posted:-)

      Liked by 2 people

  3. I am getting assessed next month via Skype. This all came about because I was researching Aspergers in males due to my ex showing clear traits, I sent him all the information and he got assessed, he is on the “high functioning end of the spectrum”. Although we broke up, for the most part we did have a connection that can’t really be explained, we “got” each other and we still do. We can sometimes explain the other’s thought patterns, and they make sense to us. I digress. I thought it would be interesting to look at the female side of the spectrum, and I had too many “Aha!” lightbulb moments to ignore it, I did all the online tests, I got my ex to take them too and we scored similarly, I got my sister to take them as well as a control and she scored very NT on all. I took my trait list and “scores” to the local doctor who basically rolled his eyes at me and asked me to pick a psychiatrist if I was “sure” I wanted to. He didn’t even look at my information. So I booked in in spite of his scepticism, with a 5 month wait to see a general psychiatrist. In the mean time I found Tania Marshall on Twitter. I contacted Tania and asked if she knew any psychiatrists locally to me that I could see who specialised in females on the spectrum, she referred me to her assistant and now I am getting assessed via Skype by Tania. This is a relief for me, because I feel that whichever way the diagnosis goes it will be “right” because it’s her specialisation. I’ve been misdiagnosed in the past with Bipolar and BPD traits. I have a NEED to know, (about everything actually), so formal diagnosis is the way for me to achieve that. In saying that, I’ve found people who are self diagnosed to be just as relatable as those officially. I almost envy the self diagnosed because they know in themselves and know themselves well enough to do so. It is an expensive process, and it is a nerve wracking wait I must admit. In the meantime I am enjoying getting to actually know myself for the first time through others’ experiences etc in their blogs and for the first time in my life actually being able to relate and not having to “act” like an insider whilst feeling like an outsider – if that makes sense? 😊

    Liked by 5 people

    1. It makes *perfect* sense! Wow, I see these interesting strands of a lot of my own thought processes in your train of thought. That’s something I don’t often get to say! 🙂

      Good luck with your assessment! I hope everything turns out for the very best, whatever the results may be. Tania will know; she’s excellent! She and I have been in contact via Twitter. :). She’s a wonderful person and you’re in excellent hands ❤

      Liked by 2 people

  4. Thank you! It’s so lovely to be/feel understood and related to. I’ve spent 29 years not being so and not “knowing” who I was (which has turned me into a really big ‘people pleaser’ at the expense of myself).

    And thank you for your luck! 😊😊❤️

    Liked by 5 people

    1. I hear you, luv 😊. I’ve been there, and it took me a while but I did finally do it. I did it off the books, here in the US. If you have any questions or just need someone to talk to about this (or anything else), please please feel free to pick my brain or tap me on the shoulder; I’m happy to help in any way, whether it’s a third party opinion, a personal story, or a listening ear 💓

      Liked by 1 person

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