I want to start by saying: "Autistic" isn't a label that people give themselves for fun, or for perks. It doesn't help you get a job, no one sends you flowers, and unfortunately it comes with a lot of stigma and misunderstanding. Many autistic adults choose not to disclose their diagnosis to colleagues or family members because of the challenges that would follow, and some autistic adults will even turn down funding awards because having their name associated with the award might "out" them to family or colleagues who are less than accepting. If you know someone with autism who is open about it, this is a good moment to pause and appreciate the courage it takes to tell the world something about yourself that you know can be used as a weapon against you.
But what if you really are autistic? What is the next step when you stumble across the term, and everything in your life suddenly falls into place?
If you're old enough to be self-diagnosing, there's a good chance you're past the age range where psychologists know what to do with you. In the research community, there's a great deal of attention on this problem; researchers explicitly state that understanding autism in adulthood should be a goal for future research, and Meng-Chuan Lai (one of my favorite researchers in the field) describes challenges in adult diagnosis stemming from practical, developmental, and clinical complications. Essentially, clinicians rarely know how to diagnose autistic adults -- and even those that do often don't know how to diagnose women.
Well, for one thing, in most clinical training, autism diagnosis is defined by childhood behavior, and the patient's word is rarely considered sufficient to speak to their childhood. The trouble is, even if you're lucky enough to have a parent willing to talk to a psychologist for your evaluation, their understanding of your childhood may be flawed. My personal experience in this was what I like to call the Hermione Effect: I was so successful in the areas that parents and teachers expect to evaluate, that areas where I struggled were viewed as individuality or quirkiness. Once most of my symptoms were categorized as personality traits, symptoms that couldn't be conveniently categorized were interpreted independently -- for example, meltdowns were temper tantrums that I'd been too spoiled to outgrow. By adulthood, the symptoms that most clinicians depend on to recognize autism may be too far in the past to be categorized accurately, if anyone is even willing to try.
But why not just rely on symptoms present in adulthood?
Well, autistic adults are often excellent at masking their autism, especially if they've made it to adulthood undiagnosed. At least, that's how it's often described. I think about it a little differently: being autistic is like driving stick shift while most of the world is driving automatic. When you first start, you don't know which gear to be in when, you don't know when to release the clutch, you probably stall frequently. This is why autism is often more obvious in childhood. By adulthood, you may still stall occasionally when sitting in traffic or on a steep hill, but for the most part, people outside the car probably don't notice that you're driving stick. The only way someone would know is if they happen to be there when you stall, trust your description of your experience, or are able to watch as you're shifting gears. And while there are clinicians who are able to recognize autism after the worst of the stalling and gear-grinding are in the past, not every autistic individual has access to such a clinician.
So why not at least try to get a diagnosis?
Well, autism evaluation is expensive. Pursuing diagnosis can mean spending thousands of dollars (not even counting the cost of psychologist and GP appointments that may be necessary to get a referral). Even if you have that money, what's the point if you know that the diagnostic process is so flawed? And that's before mentioning the multi-year wait list, or the emotional struggle of having your identity scrutinized.
And when the diagnostic process is flawed, the outcome of the evaluation may not feel meaningful. If you're told you're on the spectrum, you may feel validated for a little while, then you may wonder whether you created the answer you wanted to hear with your own bias. If you're told you'e not on the spectrum, you may feel ripped away from an identity at first, until you continue to experience the symptoms that led you to pursue diagnosis to begin with, and realize the injustice of having someone who doesn't understand autism at all be the one to tell you whether or not you're autistic. Late diagnosed women report more difficulty feeling like they belong in either the autism or typically-developing community; they report impaired sense of self, anxiety, depression, and increased experiences with sexual and emotional abuse. It's not unlikely late-diagnosed men have similar experiences. Maybe part of that struggle isn't just that they weren't diagnosed younger; maybe some of it is how hard it was to get the diagnosis when they tried.
Then, perhaps most importantly, there's what happens when autism is misdiagnosed. Sometimes when people pursue autism diagnosis, they're just told that they're neurotypical; more often, another diagnosis is pulled out to explain their symptoms, a diagnosis that doesn't fit. Women with autism are especially likely to leave an evaluation with a diagnosis of bipolar disorder or borderline personality disorder. What a lot of people don't realize is, misdiagnosis isn't just disappointing; it's damaging and potentially dangerous. An autistic adult who leaves with the wrong diagnosis doesn't just miss out on the benefits of a correct diagnosis; they may endure treatments that actively work against their best interests, be put on medications that make it impossible for them to even get out of bed, and have all of their experiences dismissed and invalidated. Autistic adults who are misdiagnosed often undergo a torture of harmful medications, misguided therapy, and other extreme interventions.
And let's not forget the risks to getting the correct diagnosis.
Here's a quick personal anecdote: last month, I was sitting in one of my classes in the PhD program for cognitive neuroscience. We had to give group presentations on topics of interest to us, and one of my classmates chose to present on autism and memory. They stood before a class of graduate psychology students and told everyone that a child with autism could stand there, listen to everyone state their date of birth, and years later still recite with complete accuracy whose birthdate was when. In case you don't know this, that is not true. It's not even close to true -- at least, not for everyone who's autistic, maybe there are some who could do it. I struggle to remember people's names, I certainly don't remember when they were born. Then, this same group went on to describe that an autistic person would not, on the other hand, be able to remember content of a conversation they had with you earlier that day. What?! I drive my fiancé crazy because I quote things he said over a year ago. I can sometimes recite parts of my favorite shows even if they're in a different language, my memory for conversation is exceptional -- and I'm not unusual in that. Not knowing how best to address the situation, I talked to my teacher after class; I explained that there had been inaccuracies in their presentation and I hated for a group of psychology graduate students to leave the class believing that was true. My professor nodded carefully, saying she'd been half expecting me to correct them during the presentation. Then she said, "I was also surprised by their errors. For example, when they said autism can't be cured... isn't that what ABA therapy is for?" ...No. No, that's not how it works. No. (Yes, I did proceed to address the situation appropriately.)
My point is, even people with PhDs in psychology, teaching psychology PhD students, don't understand autism. Psychology graduate students put time and effort into preparing a presentation, and it's filled with falsehoods and stereotypes. If people who are actually making an effort to understand autism are coming back with so much false information, how informed do you think employers are? How about teachers?
When I was lucky enough to find a psychologist who recognized that I had autism, she recommended against pursuing formal diagnosis; she explained that the process could be traumatizing, the waitlists long, and the outcome less than helpful. Then, a family friend explained the deeper reason: I wanted to go to medical school, and I might not get approved for a medical license if I had a diagnosis. And medicine isn't the only field where an autism diagnosis may hurt your career; if you have an autism diagnosis, you may be excluded from security clearances necessary for government work, closing doors to politics and military careers. Depending on how autism presents for you, this exclusion may protect no one, and be nothing more than stigma supported by rulemakers who don't know what autism is. Having your autism officially diagnosed may be the end of your career or goals. If you think that's justified, then you have a limited understanding of what autism can look like.
Finally, I'd be remiss if I didn't mention the ridiculous comments you face if you find yourself speaking to a psychologist who doesn't know what autism looks like. Just a few of the things I heard were, "You can't be autistic, you want friends," "I don't think autism is the right diagnosis for you, you seem to care about your boyfriend," "I'm not sure I understand why your past psychologist said you have autism, you seem so charming..." and, best of all, "I don't think you're autistic, that only really happens in guys. But, you did get raped by your friend, which means you chose to be friends with someone who was a rapist. That probably means you have borderline personality disorder, let's talk about that."
With all these downsides to autism diagnosis, it's not surprising that some people on the spectrum choose to stick with self diagnosis. After all, official diagnosis is stressful, expensive, and can say more about the knowledge of the clinician than it does about you. Yes, self-diagnosis means you miss out on legally-mandated accommodations for persons with disabilities in the work place or in school; depending on where you live, there may be other assistance programs available for people with a diagnosis. And, you're at the mercy of your friends and family to trust your word. That said, depending on where you live and the quality and training of clinicians near you, that could be exactly where you'll land no matter what you do; if that's the case, maybe it's better to avoid the expense and emotional toll.
Disclaimer: It is absolutely valid to choose to pursue official diagnosis. I myself have an evaluation scheduled next month. (Update: I did receive official diagnosis!) I am lucky enough to have access to a resource I trust, to be in a field where it won't harm my career, and to work under people who know autism. I have the opinion of phenomenal autism researchers assuring me that whatever a report says, I am right to call myself autistic. My intention is not to discourage anyone from pursuing diagnosis; rather, I think it's important to be aware of the risks in order to be braced for a less-than-ideal outcome. If it's scary for me, with my support network, I can only imagine the experience of others without. Update: I did receive official diagnosis.