[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.
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.
(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.
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?
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.
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.
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.
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?”
“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?
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.
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.
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!
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
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.
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.
- The [Self] Diagnosis Debate: Part 2 - May 12, 2019
- Autism: The [Self] Diagnosis Debate - April 9, 2019
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.
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.
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.
Although keep in mind that some people may not be able to express or communicate their symptoms to you. You’ll be able to tell without interrogating/questioning them whether they’ve thought this through or not. I guess it just depends on how you go about it.
i hear you concern about diluting the label by letting anyone claim it, but i don’t know of a good solution.
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.
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.
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.
“one of us!
ONE OF US!
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!)
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.
Tumblr that explains everything. Please grow up and stop making people lives with autism harder, this role play of autism from there I’m just sick of, the damage it has done to the autistic community is awful really has set us back so many years in public perception and why many of us still are afraid of disclosing our autism in public
I’m so glad you liked them!
I don’t know why it took a ‘random’ stranger on the internet to give me permission to trust myself, but it did. Thank you!
I have been doing my research into whether or not I could be, I have been dealing with major imposter syndrome. your article was really helpful, once I reached the last paragraph, I started to uncontrollably cry out of know where, I didn’t realize how much I needed to hear that. so, thank you for that you’ve helped me a lot.