The [Self] Diagnosis Debate: Part 212 min read

[If you missed the first part of this article, follow this link and check it out! Because we’re picking up right where we left off, folks, despite my extended Easter hiatus.]

The Fight To Become Official

In the first part of this article, I made a number of argu­ments for self-diagnosis. It’d be a lie to say there aren’t more coming in this second half. That is kind of the oper­a­tive thesis here, but I think I hit the high­lights.

That said, this may still feel lop­sided, because when it comes to an offi­cial diagnosis…there are a lot of obsta­cles to actu­ally acquiring one. There is a reason, after all, I am self-diagnosed, and why I wrote an entire article in sup­port of self-diagnosis.

Business charts, graph paper, and a calculator with a man's hand holding a pen. The visible text appears to be Spanish or Italian.
“So we did the math, and…we don’t even think this is a pros and cons list. We’re pretty sure this isn’t even in English?”

Financially Underwhelmed

First of all, let’s talk cost.  I am, as are many other people on the spec­trum, under-employed at best, not making a whole lot of money for var­ious rea­sons.  It can be hard for us to find jobs we can easily do, bosses who can accept and work with our neu­ro­di­ver­gence, and sched­ules that can accom­mo­date us.  

Some of us find it dif­fi­cult, if not impos­sible, to seek or achieve quote-unquote ‘normal’ employ­ment at all, depending on the ways our neu­ro­di­ver­gence affects us. As a direct result, a lot of us are, shall we say…financially dis­ad­van­taged.

This seems out­ra­geously unfair, con­sid­ering how des­per­ately hard we have to work just to manage as well as we can in a society not struc­tured for people who operate the way we do. A single day of unre­mark­able cus­tomer ser­vice (or even friendly social­izing in a casual envi­ron­ment) can rattle my nerves so badly that I can’t focus on much of any­thing for 48 hours after­wards, whereas a neu­rotyp­ical person may find their bat­tery hardly drained in the same sit­u­a­tion.

A person counting out dollar bills.
Sweet, filthy lucre! I’m so happy my sur­vival and per­ceived worth as a human being is tied to these pieces of paper that are extra hard for people like me to earn! Capitalism is the best!

(In case you’re won­dering why I didn’t use func­tioning labels in that last para­graph, we’ve got a great article detailing the prob­lems with that.)

Add into these con­sid­er­a­tions the state of health­care, the fact that not all coun­tries have easy access to health insur­ance, and the costs of cer­tain tests, screening instru­ments, and spe­cial­ized behav­ior­ists needed to eval­uate and diag­nose someone clin­i­cally, and the price tag for even an intake exam can easily be out of reach for your average neu­ro­di­ver­gent person.  

When I was doing Google searches on the sub­ject for myself, most people advo­cated for simply looking at check­lists or taking free diag­nostic tests rather than seeking a clin­ical assess­ment.

To put it another way, most resources I found for those looking on how to seek a diag­nosis rec­om­mended self-diagnosis as a more con­ve­nient and cost-efficient method over seeking an offi­cial diag­nosis. This isn’t to say that self-diagnosing is better than get­ting an offi­cial diag­nosis, but it’s at least con­sid­ered to be the most fea­sible option for most people.

An array of craft tools on a desk - tape, scissors, an exacto-knife, a pad of post-its, smaller colored rolls of tape, etc.
“If you can’t get a fresh diag­nosis straight from your doctor, home­made is fine.”

It becomes even more lim­ited when it comes to people who spe­cialize in adult autism and Asperger’s, as neu­ro­di­ver­gence tends to be rec­og­nized and diag­nosed more readily in chil­dren. (And usu­ally, it’s adults who have picked up on their own symp­toms that find them­selves needing to either accept self-diagnosis or seek a clin­ical one, so it’s pri­marily adults I’m addressing this article to.)

The dif­fi­cul­ties of get­ting an offi­cial diag­nosis are starting to stack up a bit here, aren’t they?

A woman looking stunned, exhausted, and/or overwhelmed.
“Can I self-diagnose as geo­graph­i­cally dis­ad­van­taged?”

Well, sadly, it gets worse.  Even if you can afford a pro­fes­sional, and even if you can find one in your area, there’s no guar­antee that they’ll diag­nose you as being on the spec­trum– even if you actu­ally are.

Diagnosticians are, at the end of the day, people, and diag­nosing neu­ro­di­ver­gence on the spec­trum isn’t really some­thing you can do a swab test for (yet).  A lot of it comes down to gauging the kind of symp­toms you have, how many of them you have, the degree of severity to which you expe­ri­ence them– which is to say, sub­jec­tive cri­teria.

What’s more is that you-- the person with the most inti­mate knowl­edge of your expe­ri­ences, but also someone whose com­mu­ni­ca­tion skills aren’t nec­es­sarily infal­lible– have to com­mu­ni­cate those things to your doctor, and it’s pos­sible that you may not express them well, that you may empha­size the wrong things, that your doctor may focus on the wrong things, or even simply that your doctor may not listen to you.

A toddler covering her mouth in shock/alarm.
And when you con­sider that adults on the spec­trum have devel­oped coping tech­niques to self-manage their more neu­ro­di­ver­gent ten­den­cies over the course of their lives, the poten­tial for “oop­sies” goes way up.

The value of a pro­fes­sional diag­nosis should be the tan­gible ben­e­fits that come from offi­cial med­ical con­fir­ma­tion. It should not be what we con­sider the base­line of true validity in terms of some­one’s being on the spec­trum or not. We’re not punching tickets here, so there’s no casual reason anyone should need to see an offi­cial stamp.

A set of elderly hands using a large wooden stamp to stamp a piece of paper.
“All right, now that you’re offi­cially autistic, you can go in and out of the park freely until nine, and all the rides are half off.”

If You Like The Main Course, You’ll Love the Sides!

Last but not least, some of the biggest obsta­cles to obtaining a pro­fes­sional diag­nosis can be the ones imposed on us by our own bodies. I noted in the first part of this article that ADHD has a lot of overlap with autism, but I didn’t go into the fact that both are co-morbid with a number of other things– most com­monly anx­iety, depres­sion, sen­sory pro­cessing issues, and gas­tric dis­or­ders.

The strain and stress of dealing with mul­tiple levels of neu­ro­log­ical issues, sev­eral of which drain our energy and drive, can make it hard to go through the trying process of searching for pro­fes­sionals, nav­i­gating phone calls and sec­re­taries and web­sites, making and keeping appoint­ments…

In short, on top of the prac­tical issues that make get­ting a diag­nosis dif­fi­cult, we have per­sonal issues that can make even seeking one in the first place an uphill battle.

Someone bundled up in a quilt on a bed.
Just thinking about that made me tired.

Why Would I Ever Want An Official Diagnosis, Then???

“Wow, Callie,” says the con­ve­nient voice in my head I invent when­ever I need someone to ask me leading ques­tions, “there’s so much work to get­ting an offi­cial diag­nosis! It sounds so hard to do! Are you saying it’s a bad idea to get one?”

Actually, no.

“Oh. Well…what are you saying, then?”

Simply this — that whether you can or should get an offi­cial diag­nosis depends heavily upon your per­sonal cir­cum­stances– such as whether you can afford a clin­ical assess­ment, and whether you need accom­mo­da­tions that require a clin­ical diag­nosis.

There is a gulf of dif­fer­ence between needing a diag­nosis and needing a label, and you should examine which it is you’re really looking for. Which is to say, do you want/need to be rec­og­nized as being on the spec­trum for per­sonal rea­sons, or do you want/need to be rec­og­nized as being on the spec­trum for offi­cial rea­sons?

A selection of blank post-it notes, with a hand taking one of them.
If all you need is this…

Being clin­i­cally rec­og­nized as autistic can give you access to valu­able resources that require an offi­cial diag­nosis.  It also, as pre­vi­ously men­tioned, helps silence the Doubting Thomas that lives within your own head, which those of us who have mental ill­nesses on top of being autistic are intimately-acquainted. It’s the little voice who whis­pers you’re just faking every­thing. But that should be an inci­dental ben­efit of receiving a clin­ical diag­nosis, not the main goal.

Distressingly, not all voices of doubt come from inside one’s own head. It’s unfor­tu­nately common for neu­rotyp­ical friends and family, or even rel­a­tive strangers, to insist someone can’t be autistic.

Usually, such denial is the result of those people having a very narrow, or skewed, view of what an autistic person looks or acts like. Such people are likely to push you to ‘prove’ you’re autistic with an offi­cial diag­nosis, and/or refuse to take even the most painstak­ingly researched self-diagnosis seri­ously.

There’s a fine line between someone encour­aging you to get a pro­fes­sional diag­nosis because they believe it would be gen­uinely helpful to you, and their refusing to believe you about your own expe­ri­ences and research unless a cred­ible third party backs you up.

It’s a line a lot of neu­rotyp­i­cals fla­grantly cross. Self-diagnosis is still an expert opinion that deserves to be respected by the people who know you, your­self included.

A doctor holding a chart and a pen.
…con­sider that a self-made label is still useful in its own way, even if it’s not going to be iden­tical to this.

When it comes to people who won’t believe or accept that you may be neu­ro­di­ver­gent, for what­ever reason, the problem usu­ally goes deeper than whether you’ve got a doc­tor’s note or not.

As such, proving any­thing to others, or feeling like you’ll be safe from crit­i­cism if you meet the right cri­teria to sat­isfy base­less accu­sa­tions, is rarely a good basis for any deci­sion– much less a deci­sion as impor­tant as seeking a (very expen­sive) clin­ical diag­nosis for autism. Besides, the impor­tance of learning to have faith in your­self and your own self-knowledge can’t be over­stated; out­side con­fir­ma­tion is always wel­come, but try not to let it become a require­ment for per­sonal trust.

  • there could be a con­crete reason for it all, an expla­na­tion that covers all the things you’ve never under­stood
  • that things you thought were per­sonal dys­func­tions are actu­ally expected and normal behav­iors within a dif­ferent frame of ref­er­ence you never knew existed
  • that after a life­time of people asking in exas­per­a­tion, “Why are you so weird?” there may be a group of people who instead say, “I know, right???”

…it’s impos­sible to over-state how pow­erful the appeal of those things is, even in the face of accepting some­thing seem­ingly less-than-ideal about our­selves.

A little girl looking off into the distance in wide-eyed awe.
“SO MANY THINGS MAKE SENSE NOW…” — every person on the spec­trum, ever, part deux

So, are those the things you want your offi­cial diag­nosis to make real for you? Because it’s impor­tant for you to realize that those are all things you can give your­self with self-diagnosis.

You don’t need to wait.  You don’t need a doc­tor’s note.  You don’t need to be a card-carrying aspie (please see the link for how we’re reclaiming that word) or autistic person to join the secret cabal.  (And if anyone asks you, the pass­word is giraffe.) No one is checking your cre­den­tials when you iden­tify your­self as autistic in everyday life!

A giraffe, looking smug/haughty.
“Swordfish? Old and busted. Me? New hot­ness.”

There are very spe­cific cir­cum­stances for which you need an offi­cial diag­nosis, and you’ll know exactly what they are if and when you need them.

For every­thing else, there’s Mastercard. (Okay, I kid, but you were warned I’m a memelord so if you’ve gotten this far in the article and didn’t expect this you have no one else to blame.)

But in all seri­ous­ness, for every­thing else, you have so much freedom, and you shouldn’t spend it ago­nizing over whether or not you’re allowed to take a label that will improve your life in sig­nif­i­cant ways.  That should be a no-brainer.

If you need an offi­cial diag­nosis for spe­cific rea­sons, get one.  If you don’t, then allow your­self to self-diagnose. Because…

Labels Are Meant To HELP You

A bunch of people's hands held together. Some of the hands are painted red, to make the shape of a heart when the hands are held together.
This is sup­posed be a cute and inspiring image, but let’s just all acknowl­edge that looks like blood. I’m not gonna lie to you, readers. We’re all seeing that. It’s weird.

You are the expert on your­self.  If you’re sat­is­fied with your own store of evi­dence as to your neu­rotype, if you’re con­vinced of and are craving the ben­e­fits of a diag­nosis, then you owe it to your­self to kick your self-doubt to the curb and take that label.  That doubt is only harming you, holding you to an illu­sory burden of proof that no one is asking you for.

Permission Granted

Finally, dear reader, I offer you one last resource. It’s only as good as you believe it to be, but then again, that goes for most things.

Opening the door, step­ping over the threshold– if those are things you want to do, then you have the power to do them. If you want to see whether the people past these doors are your people, if you want to be able to com­pare your own expe­ri­ences against those of actu­ally autistic people, to be able to self-diagnose with con­fi­dence, then the only way is to come in and see for your­self.

I’m not here to tell you what you should do. I’m just standing here by this door I’ve made, hoping it will help grant access to the people who want it, and to say one thing to those who come in– whether they’re just vis­iting, whether they’re coming home for the first time, or whether they’re still trying to figure that out them­selves.

“Welcome.”

A hand in warm sunlight, reaching out, with a prism reflecting a faint rainbow across the palm.

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10 Comments

  1. I’ve very much enjoyed both these arti­cles on self-diagnosis. Personally I’m minded to kick offi­cial diag­nostic activity aside. The insti­tu­tion that does diag­nosis being a pri­mary agent in the obstructing and harming that autis­ti­cally char­ac­terised and devel­oping indi­vid­uals tend to be sub­ject to.
    The autistic and aspergers and ASD spec­trum and autism and all else, are simply ideas and con­cepts and words. What corpus of that has been spun up to date not nec­es­sarily defining what we are trying to grapple with. Rather the nexus of ideation cur­rently in play simply indi­cates or flags what we should be addressing. Given that, self-identification is arguably the core of things, and diag­nosis is only mar­ginal to that core.

    1. Author

      I’m glad you like the arti­cles!

      That said, I ini­tially thought the same way you did about offi­cial diag­noses, and my first draft of this article was harshly crit­ical of get­ting clin­ical assess­ments in terms of how dif­fi­cult and expen­sive it is to get one. But inter­acting with the other con­trib­u­tors to The Aspergian has opened my eyes to the fact that the reason I’m able to do without an offi­cial diag­nosis is very much because I’m priv­i­leged in how my own autism presents.

      (I’m actu­ally going to do an article some­time in the future about how the broad range of how neu­ro­di­ver­gence presents, and in what degrees of severity, can lead to such misunderstandings…but also how, despite the vast gulf of dif­fer­ence between someone like me and someone with a more severe pre­sen­ta­tion of autism, we’re still so much alike. I may never face the same chal­lenges as an autistic person as my editor does, but we have vastly more in common with each other nonethe­less than either of us does with a neu­rotyp­ical person. And she rec­og­nized me as a fellow person on the spec­trum *instantly*.)

      Back on topic — offi­cial diag­noses are extremely impor­tant for a lot of people, and invalu­able to have for those who can get them. It’s best not to pit self-diagnosis and clin­ical diag­nosis against each other. If there were no real obsta­cles to people get­ting a clin­ical assess­ment, I think most of us would readily do so, and quite pos­sibly be better off for it. My article is pri­marily meant to affirm that self-diagnosis is valid for those who need it, and encour­age­ment for those who are con­sid­ering it but feel guilty and uncer­tain about trusting their own judg­ment of their neu­rotype.

      1. I have a clin­ical diag­nosis, and your article has helped me trust peo­ple’s self-diagnosis more.

        However, I think self-diagnosis is a problem in some cases, where people don’t under­stand what a neu­rotype exactly entails (the “I am bad at spelling so I must be dyslexic” people). That’s why I like to ask to people what the symp­toms of their neu­rod­if­fer­encethingy are — no matter if they are self- or clin­i­cally diag­nosed, because in any way I’d like to know how I can accom­mo­date for their brains’s char­ac­ter­is­tics.


  2. My only com­fort as an autistic adult has been that when I interact withh other autis­tics online, they have imme­di­ately rec­og­nized me as one of their own. I have had inter­ac­tions with the mental health com­mu­nity that would curl your hair with rage and it is not over yet.
    A cor­rect diag­nosis is ABSOLUTELY nec­es­sary if you’re trapped in the so-called “mental health­care” system, because the way shrinks (will­fully) mis­in­ter­pret autistic behavior under a mis­di­ag­nosis is nothing less than psy­chi­atric abuse and tor­ture, pure and simple.

    1. Author

      I believe it, and I’m just lucky I’ve never had to expe­ri­ence it for myself.

      But that’s def­i­nitely the sort of thing I meant when I said that whether you need a clin­ical assess­ment, or whether self-diagnosis is enough for you, depends heavily upon your per­sonal cir­cum­stances. Those who are looking for any kind of pro­fes­sional health­care, espe­cially of the mental health variety, really need to have their neu­ro­di­ver­gence offi­cially rec­og­nized and taken into account in their treat­ment. Otherwise, as you say, mis­di­ag­nosing aspects of their spec­trum behav­iors is only going to be the *start* of the prob­lems they’ll have.

  3. My self-diagnosis explains me to me and that’s all I need. If it explains me to other people that’s a bonus. After 75 years of not under­standing who I was, it was a rev­e­la­tion. As with most people, an offi­icial diag­nosis was too expen­sive anyway. Thanks for 2 very good arti­cles.

    1. “one of us!
      ONE OF US!
      Gooba gabba!
      ONE OF US!”
      We accept her!
      We accept her!
      ONE OF US!
      ONE OF US!”

      ( It’s from a movie called ‘Freaks’, if you’re unfa­miliar. I always say it to people when they admit their autism to me. Don’t be ashamed, there is nothing “wrong” with you! ONE OF US!)

      1. Author

        I heard a won­derful metaphor on Tumblr(of all places), which I sadly can’t take credit for coming up with, about how those of us on the spec­trum are run­ning Linux while most of the world is run­ning — and is tai­lored to — Windows. Our oper­ating sys­tems may not be good at the same things as Windows; in fact in may make cer­tain things that a Windows user would find trivial excep­tion­ally chal­lenging for us, espe­cially when so little is designed to be inher­ently com­pat­ible with our Linux sys­tems. But there are some things our OSes are tai­lored to that Windows users can only dream of, and just because we’re less common and more spe­cial­ized doesn’t mean Linux is a virus. It’s not harmful; it’s just a very dif­ferent way of pro­cessing and inter­acting with the world.

        And it would be nice if, instead of people demanding we com­pletely over­haul our sys­tems, Windows users would be willing to make things more acces­sible for people who don’t operate exactly like them.

    2. Author

      I’m so glad you liked them!

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