If a diagnosis matters to you, then it matters

Image by Nick Youngson creative commons license

In the autism spaces I’m in, a particular scenario comes up pretty often. It goes roughly like this: A person, I’ll use the name Finley, is an adult who believes they may be autistic. Finley has looked into as much as they can – they’ve checked out the diagnostic criteria, compared it to their own behaviors and history, and something is clicking. It looks like autism might explain parts of themself that they have struggled with their whole life. Finley isn’t super comfortable with self-diagnosis and really wants to know for sure, which means going out and finding someone to go through an official diagnostic process. Then, the people around Finley try to stop them. The people say it’s pointless, there’s no use, Finley is an adult now so why bother, it’s an expense that has no purpose. Finley ends up in an autism space to ask about it. Is it worth getting a diagnosis? Are all those people right? Should Finley just give up on this idea of knowing for sure?

So to be totally, perfectly clear – Finley, if getting a diagnosis matters to you, then it matters. Period, full stop. You shouldn’t have to justify it to anyone, because the fact that it matters to you is ultimately all that matters.

That said, if you’re in the US, you’re probably going to have to pay for it yourself and it isn’t necessarily cheap to do. If you need financial help to access diagnosis, the sad reality is that you will probably need to find a way to justify your need to other people. You shouldn’t have to, I think it’s wrong, but this is the world we live in. So how to do that with people who really don’t see the point?

This can honestly be tough. When I first sought an official diagnosis I asked my dad if he would help me pay for it. To be clear – I didn’t ask him to pay for the whole thing, only if he would be willing to contribute some amount. His response was to compare it to an employee asking their boss for a loan for a job project, and demanded I justify it in those terms. I’ll be honest – I was pretty shocked by that and did not actually manage to comply with his demand. He did not help with the expense of diagnosis. Which is to say – I know extremely well that sometimes the people who are supposed to support us just don’t or won’t. 

So how DO you justify it to people who don’t see the point? Well, part of this depends on whether or not they are acting in good faith. If they don’t want to see the point, nothing you say will convince them. That is just an unfortunate truth. But if they genuinely WANT to understand, there are a few ways to approach this.

If you are in a situation where you need accommodations in your job or wherever else, an official diagnosis will really help you there. If they try to come back with the claim that you didn’t need accommodations before so why do you now, well… let me make an assumption here. My assumption is that you DID need those accommodations the whole time, and the fact that you weren’t able to get them has led to burnout, meltdowns, shutdowns, and other unpleasantness. You’ve reached a point where you’re running on fumes, and something needs to change. An official diagnosis will help you get the changes you need.

The comfort of certainty. If you’re like me, not being able to point to a diagnosis to say FOR SURE that you’re autistic just doesn’t feel good enough. Like, ok, I put literal years of time into looking into it and reading and looking at a variety of diagnostic criteria and I reached a point where I was able to be pretty expletive certain, but I just wasn’t comfortable with that. I wanted to know for sure. I’m fortunate enough that I had other people in my life who understood and supported that, even if my family didn’t.

To be clear – I’m not at all trying to say that official diagnosis should matter to everyone. Only that if it matters to YOU, that’s valid and real. I respect that and so should everyone else. It’s unfortunate that we live in a society where official diagnosis is often unattainable without social support. I’m sorry if your social support is lacking and you’re surrounded by people who are dismissive of you. I believe you, and it matters.

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