[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.