(Thanks to W-Photos @ Creative Market for the above stock photo.)
The first time I considered that I might be autistic, it was as though all the spiritual awakening revelations I had been seeking my whole life took place in one moment.
Whoa. So that’s a thing? Not just a me thing, a thing thing?
Once it clicked for me, I couldn’t not see it. I mean, yes, I had outdated beliefs and attitudes about what autism really was. And yet, I found myself relating to autistic-coded characters way more than I figured I was supposed to. I joked about all my Sheldon Cooper moments. I found myself in #actuallyautistic narratives. I started researching others’ stories and it turns out, there was something worth exploring. It didn’t take long before I was buying Asperger’s From the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome and I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults and other such books about undergoing the same self-discovery. Wow. For once in my life, I had an answer.
But then, the doubt set in. I mean, I’m already an adult. I grew up in the 1990s before this childhood assessment and awareness campaign really got going. I came from a low income “tough it out” family and didn’t receive any kind of mental health care until college, and all that entailed was a mental health screening survey with four complimentary counseling sessions. After college I was in and out of sliding-scale-income clinics with interns who had never heard of OCD, let alone autism. The meetings didn’t help and I felt guilty paying so much for nothing. So I quit going and got worse.
Discovering ASD and the way it affects undiagnosed adults opened entirely new doors for me. But that doesn’t mean the road to diagnosis is easy, especially if you are advocating for yourself.
Why you may meet with resistance at first
It’s not an uncommon experience to be met with some disbelief when you present the idea that you may be on the autism spectrum. First of all, if someone else (a teacher, parent, or medical professional/caretaker) did not flag you for assessment, you obviously:
- Succeeded in school
- Followed a career or job path
- Have a functional social life
- Are capable and coping
Obviously. I mean, if you weren’t successful at those things, someone would have noticed that you had a problem by now, wouldn’t they?
Except…maybe you succeeded in school because the rules and expectations were clearly defined, but struggled when you were left on your own to prioritize and execute tasks. Or maybe you succeeded because your intelligence made the subject matter at that level easy to understand, or your school system let you slip through the cracks due to less stringent standards. Or maybe you didn’t succeed in school, but people chalked it up to you being lazy or undisciplined.
Maybe your “career path” is nothing more than a series of part-time jobs punctuated by long bouts of unemployment, but you keep telling everyone you are “freelancing” and “starting your own business” while your executive dysfunction prevents you from even knowing what steps to take. Maybe you have a great career on paper but come home absolutely exhausted and spend every second you’re not at work trying to recover. Maybe you have cycles of repeated burnout. As long as you are “employed” people won’t ask questions…until they start to ask why you aren’t more ambitious, why you aren’t going for a higher degree to get a better job or taking that higher position while you seem to stick to what other people consider “beneath you.” You tell them you’re happy where you are, but the truth is…you’re lucky to even handle this, and you know it. Anything more “ambitious” would absolutely crush you.
Maybe your “functional social life” is you talking to a few strangers online about a shared topic of interest, and awkwardly keeping in touch with a few real life acquaintances every six months or so. Maybe it’s a string of short, failed relationships characterized by intimacy issues. But hey, you tried, so that’s what counts, right?
Maybe you only look capable because you don’t let anyone look too closely. Maybe you pretend to be coping by relying on alcohol or other self-abusive mechanisms. Maybe you’re not coping at all. Maybe nobody can see that because you are too ashamed to admit that you’re struggling.
But when you come to your friends and family with your suspicions that you might have ASD (or something else), a lot of the time you are met with disbelief in large part because they think you’d have already been diagnosed by now if you “had something” or that, whatever you are, you’re not autistic. I mean, come on. No way. If you’re autistic, what are they? I mean, they have problems too sometimes. Do you think everyone is autistic? Everyone’s got something wrong with them, after all! Isn’t everyone on the spectrum if you think about it?
How to talk to people about your suspected ASD:
Now, you don’t have to come out to people during your diagnostic process. In fact, you don’t even have to undergo a diagnostic process if you don’t want to. For some people, self-discovery is more than enough. It gives us permission to be kinder and more accommodating to our needs rather than beating ourselves up about our struggles. But for those who choose to get a formal diagnosis, the process can be a frustrating one.
Adults who are undiagnosed tend to have learned many coping mechanisms to function in society. Before we knew what was wrong, we may have blamed any number of things on our behavior and issues. We may have tried to self-medicate. We may have gotten diagnoses for other conditions. And the truth is, some struggles are more acceptable in our culture than others. Alcoholism or workaholism tends to get more air-time (everybody drinks, everybody works) and while these things are stigmatized, the stigma is different. If you have undiagnosed autism that you’ve been masking through other self-destructive, yet more socially acceptable behaviors, your ASD symptoms may be blamed on that.
I hate to say it, but society is way more comfortable with the idea that you don’t have autism. Part of the reason for this is the narrative we’ve all been given about what autism is. Autism, society suggests, implies a lack of self-control, a lack of emotional awareness, a lack of connection, a lack of humanity. Yikes. Who wants to come into the office on Monday proudly proclaiming they’re no longer human?
That’s a problem. It’s a problem that we have spread so much misinformation (refrigerator mothers, anyone?) about autism that people aren’t seeking help.
You know what autism really is? A different way of processing and organizing sensory and perceptual information. Sometimes this works against us and other times it’s a strength. But why should something different necessarily be bad? Maybe you don’t go to live concerts because you find them distasteful. I don’t go to live concerts because I can’t tolerate the noise level. We’re BOTH not going to live concerts, but your reason is more fundamentally human than mine?
Besides the stigma, I think there’s a pervasive discomfort with self-diagnosis. When I went to get my ASD evaluation, there were a few tests thrown in there assessing my levels of hypochondria or factitious disorder tendencies. And, you know, fair enough. You want to make sure the test taker is accurately self-reporting and is taking the tests in earnest. But I was surprised when I got my report back to see how much of the evaluation was dedicated to rooting out fraud. Like, they test to see if you’re bullshitting. Not surprisingly, I wasn’t, but it goes to show how much we fail to trust the reports of someone coming in for help.
(Side note here: not everyone with suspected ASD will actually have ASD, and they test for lookalike conditions as well. A correct diagnosis is the most helpful one, so I’m not suggesting that medical professionals don’t have a right to look at other possibilities.)
If you’re facing resistance from friends and family, you’re likely to hear a few key things:
- We’re all on the spectrum (and/or we all have issues) and thus don’t need a diagnosis
- You’re too old to need a diagnosis
- Autism is only a childhood condition
- Autism is a SERIOUS HANDICAP and you don’t have that
- You’re too successful and capable to be autistic
- You don’t look autistic (what does autism look like, guys?)
- Your autism reflects poorly on them
When you hear those things, remember that you’re facing millennia of societal stigma. Don’t listen to these people. Trust yourself and trust your evaluator (that is, IF they are trained in ASD assessments and are familiar with ASD in those are not just young, male, and white). Keep pushing for yourself, because it’s worth it.
How has your experience been so far? Share below in the comments!
(This post contains affiliate links, which means that if you choose to make a purchase through one of the provided links, idionity.com will get a small portion of this sale. This does not cost you anything extra and helps to support site costs. For more information, view my disclosure page.)