Should you get an official diagnosis for autism? Or diagnose yourself? We’re here to help.
Welcome back to the Awkward FAQs! We specialize in answering the questions everyone worries about saying out loud. And no, before you ask, we’re not experts! We* are an author, Heather Caliri, who, as of this writing, was diagnosed with autism one month ago.
Still: we have been astonished to learn the research and treatment for autism has been so poorly done for years that we might very well know more about the diagnosis than some people currently practicing medicine!
You’d think an official diagnosis was the only or best way to know for sure you’re autistic, but the truth is a lot more complicated. Let’s explore why, awkwardly, together!
*The royal we. Go with it.
FAQ in this edition:
How did you find a therapist to assess you? How did you decide whom to choose?
How did the official assessment make you feel?
What did the official assessment cover, specifically?
How can I self-diagnose myself as autistic and/or learn more about neurodiversity?
“What does it matter if you have an official diagnosis? It’s just a label.”
How did you find a therapist to assess you? How did you decide whom to choose?
My church has a mental health coordinator who offers referrals for a variety of caregivers. I asked her for some resources, and she gave me referrals to a few dozen. I’m so grateful to be at a church that not only encourages to seek professional help, but prioritizes helping them to this extent.
Many of the therapists specializing in autism didn’t mention adults at all in their materials—their intended audience was clearly parents of autistic children. I struck them off the list immediately, since they aren’t necessarily qualified to help an adult. Some of the others on the list offered a full assessment that could be used to obtain formal accommodations in work and school—which began at about $3500. A few offered a less formal evaluation process that was cheaper. I went with one of those since I don’t need to use a diagnosis officially in any way.
How did an official assessment make you feel?
I was expecting assessment to feel like a regular therapy session, but it wasn’t, and not in a good way.
Let me be clear: I really liked my therapist. She treated me like a normal human being, displayed a lot of compassion and sensitivity, and conveyed no sense of condescension or weirdness about autism itself. She also seemed (to this autism newbie) very well informed and practiced at what she was doing. So what I’m going to say next isn’t a reflection on her but on the process itself.
Being evaluated for the condition felt a little bit like being a zoo animal. And also, since I had not met the therapist before, I did not have a history of mutual trust and respect to draw on to make that “being observed” feeling less uncomfortable.
Unlike regular therapy, which is mostly back and forth, an assessment is, by its very nature, one-sided. The therapist asks you about your experiences, and you respond without them saying much back. The poitn is not to get help addressing any issues, but more to prove that what you think is true (“I’m autistic”) is actually true. That is an unpleasant feeling, especially if you have experienced regular gaslighting. It was trauma-adjacent, which isn’t great.
I would not want to go through that with anyone that had a terrible beside manner or that I did not feel rapport with. Given that I did not know my therapist before paying in full for four sessions, it was a significant risk to employ her.
It might seem counter-intuitive, but I came to the assessment process really wanting to confirm I was autistic. Given that I generally have low support needs and people are shocked to realize I’m not as gregarious as I appear to be (they can’t believe I am actually terribly socially anxious all the time) I felt pretty sure that an official diagnosis would help me shut down people who questioned my autism. Even with an official diagnosis, I still worry people won’t believe me. (I can’t control what people think, and frankly, those who are hard-asses about stuff they don’t know much about will not be good friends, but it isn’t helping my social anxiety to wonder about that more).
In other words, I’m glad I endured the short-term gas-lighty feeling because I think in the end it will mean I endure less long-term gas-lighty feelings. Still, I think it’s worth mentioning that assessment did not feel particularly supportive in the moment. It felt supportive after the fact.
At one point, the therapist mentioned that she wasn’t sure if C-PTSD was producing the symptoms I was experiencing, or if it was autism itself. I felt very panicky about that; I was worried I would have paid more than a thousand dollars to be told I did not qualify as autistic when everything I’d read so far made me absolutely sure I was.
Given that my self-knowledge is one of my biggest strengths, I decided that if she told me I was not autistic, I would chalk up the assessment process as a financial loss and ignore her. My life and struggles make far much more sense with autism than without it, and I have had tremendous success in trusting my own judgement even when it feels counter-intuitive.
I was relieved when, after more questions, she definitively agreed that autism was the best label for my experience. But in the end, her opinion didn’t matter to me as much as my own.
All that is to say: official diagnoses are not walks in the park, nor are they necessarily the best choice for all people.
What did the official assessment cover, specifically?
First Session
We talked about sensory experiences. Going through each of the senses one by one, she asked if there were any that felt irritating or unbearable, or those that I sought out because they felt great. I was surprised at how many came up that I’d never noticed before—particularly many that limited my participation in childhood games (I had trouble swimming, diving, riding a bike, going on roller coasters and slides, or pretty much any physical activity that made me feel out of control).
Second Session
We spoke about early social relationships. Did I find it easy to make friends? (No.) Did I find it easy to get along in groups? (No.) This was one of the hardest sessions. I was very lonely growing up, and very bewildered about why I found it so hard to relate to other kids. It was difficult reliving that.
Third Session
We investigated adult social relationships (college and after). I was the most social of my entire life in college and immediately afterwards.This was a confusing session, because my adult social experiences did not sound typically autistic. This session was why my therapist wasn’t sure if I had autism or not.
I think being part of church groups was a big part of why I was so social back then—church provides consistent, structured ways to meet people and have conversations I’m interested in (since I love theology and talking about Deep Questions, Bible study is actually often quite interesting to me). I had never had church relationships go south yet, either, so I did not become as boundaried then. I also did not know how much anxiety I felt socially because most of my emotions and connection to myself were shut down by earlier experiences. So I chose social situations over caring for myself (even, for example, going to events when I had bronchitis and laryngitis).
It also helped me a lot to go to a small, “elite,” intensely communal and engineering-focused university (Rice University in Houston). Being in a nerdy school meant the student body was probably heavily neuro-divergent, meaning my social skills were slightly above average there. That it was small, and set up to make things feel even smaller meant the work of creating community was quite easy. And my junior year (observing a dear friend, Jerusha, who is very gregarious) I figure out how to appear gregarious too, especially as a way of coping with studying abroad for a year.
Fourth session
We talked about my special interests and how obsessive they are—less of a deep dive of experiences and more of a quick-answer round.
She asked, “Would people say you’re stubborn?” and I laughed uproariously because YES, especially the people that live with me (I do a passable imitation of “chill,” but it’s all acting).
She asked if I tended to obsess over the stuff I was interested in and again, more rueful laughter. I either want to do something eight hours in a row every day or I’m completely uninterested in it.
She had questions about habits/routines (I’m a HUGE FAN of them and get anxious if my routines change, like, say, on a vacation to Hawaii, because do I really want a vacation if that means I can’t watch a murder mystery with my husband at 8:30 pm?).
She asked whether I do things a certain way just because, or if I do them that way because they should be done properly. (The latter. Always. Even if I know I’m being unreasonable about “properly”. If I am, say, caring for newborns, and try very hard, I can just about convince myself to “half-ass” things but I feel very wistful and grouchy about it).
Final Session
She gave me the official diagnosis, and we talked about the questions I had, and how the assessment had gone for me. I didn’t have a ton of questions, so that particular meeting was a bit shorter than the others.
Is self-diagnosis sketchy?
Not at all. See my last FAQ for why.
How can I self-diagnose myself as autistic and/or learn more about neurodiversity?
The assessments I took first are available on a site called Embrace Autism, which is an astonishing resource of tests and knowledge researched and curated by autistic people, Dr. Natalie Engelbrecht MSc RP ND & Eva Silvertant B.Des.
Other people I found very helpful, either through their sites, books or personal discussions are DL Mayfield, Devon Price, Jenara Nerenberg, Steve Silberman, Meg Eden, Amber Rice, and Daniel Bowman.
I really liked the Welcome Packet from the Autistic Women & Nonbinary Network (AWN). I’m new to receiving their info but their work looks very interesting.
Temple Grandin’s memoir was helpful to me before I got diagnosed—she helped me see the gifts, not just the deficits, of autism.
How do you decide if your suspicion that you’re autistic is “real”? The sense I got from reading all these resources was that someone had been stalking my waking hours, haunting my dreams, and knew what I was going to say before I did—about stuff I’d never even noticed before, or about stuff I felt too self-conscious about to fully admit to myself I experienced it.
If you get that feeling as you read and explore, I think you can safely assume you’re autistic. Like I’ve said before (and as therapist Amber Rice told me): autism is an internal experience, not an externally provable thing. There is no blood draw, brain scan, or DNA test that can tell if you’re autistic. You’re autistic if enough of the markers for autism (having to do with sensory processing and social experiences) are there. Only you can really know how you process sensation or feel in social situations. You are the best judge of your own experience, not doctors.
Your attitude towards self-diagnosis sounds a lot like anti-vax protestors—untrusting of actual doctors. Do you believe in science?
I think the scientific method is a trustworthy way to evaluate the world, and I’m fully vaccinated and boosted for COVID, flu, and tetanus (that last vax is up to date thanks to an unfortunate glass-breaking accident in flip-flops). I go to doctors regularly and tend to do what they recommend.
But, like many people, I have also had bad experiences with doctors. That hasn’t happened yet with autism, thankfully. But it did happen a few years ago when I went to my gynecologist asking about some vulvar discomfort and ended up experiencing nine months of lady-part hell. I want to tell the (long) story because I think it explains why we shouldn’t necessarily trust or want “expert” opinions on stuff like autism.
A few years ago, my gynecologist misdiagnosed me with lichen sclerosus, an incurable auto-immune disease that attacks genital tissue, mostly in women. I was misdiagnosed because the doctor saw a scar from one of my childbirths and thought it was a lesion.
That only happened because, like in most gynecological exams, I could not see my vulva while the doctor looked at it.
Let’s pause for a moment and ask why doing an important exam like this with the patient completely blind is standard practice. Girls are not generally taught or encouraged to look at their own genitalia with mirrors, though boys have no qualms about admiring their johnsons. This makes it harder for women to know what our lady parts normally look like. And in pelvic exams, it’s standard practice for women to not see what the doctor sees. I get that it’s harder for them to help us see our anatomy, and that some women might be hesitant to look, but given the possibility of medical error when making a diagnosis like this, it feels like a little mirror use might be wise.
My misdiagnosis led to me applying, in several doctor’s words, “nuclear grade steroids” to my vulva for nine months, which increased my pain by a factor of ten (even as I kept being told “keep at it, it will work” by the first doctor, and then a second, who confirmed the diagnosis, again without me seeing what she could see).
After nine months of terrible sleep, not being able to sit comfortably or wear underwear, much less pants, during an entire winter, I got a third opinion at a clinic specializing in sexual pain. I was lucky enough to get an accurate diagnosis during a pelvic exam that included a camera to allow me to see what he saw—where I finally realized that, in fact, the “lesion” had been a scar.
But the joy of an accurate diagnosis was quite dampened by the male gynecologist talking to me like I was a third grader and then making a joke about publicly posting the pictures he was taking of my genitalia.
The social and political context around my individual experience is important to notice here. Besides women simply not being encouraged to look at their own anatomy, women’s sexual dysfunction has been studied far less then men’s, even though our reproductive organs and systems are far more complex—and thus arguably more in need of significant study. That meant that the first two doctors I saw (both women) did not have a ton of information available to them to diagnose me correctly.
Zooming out further, seventy-five percent of women suffer from sexual pain at some point, but many are misdiagnosed, or told cap like “drink more wine and relax” as a cure for sexual pain. On top of all of that they, like me, endure dumb-ass, socially inept or straight-up misogynist men in the middle of their pain and suffering.
To make matters even worse, in the US many women are traumatized by how we manage childbearing with protocols (like episiotomies and constant fetal monitoring) that are not evidence-based, leading to some of the highest death rates for labor and delivery in the developed world, and producing more painful labors.
Routine pelvic exams can also be extraordinarily triggering for sexual assault survivors, yet I’ve never once had a gynecologist check in with me about that possibility, despite astoundingly high rates of sexual assault in the general population.
So it is reasonable for women to:
- know that gynecologists are excellent resources that we should regularly consult for our health, and
- ALSO feel wary, on edge and often not particularly helped by gynecological visits, even in the best case. In the worst case, we must fight like gladiators for ourselves in a healthcare system not designed for us, with doctors that sometimes treat us poorly, while thinking they’re infallible and gaslighting us when we disagree.
Unsurprisingly, similar dynamics are at play with disability in general and autism in particular.
Even more so than with women’s sexual health, the medical system around autism:
- Has produced poorly conceived and often actively harmful studies and theories about autism,
- Has treated autistic people like less than human, instead of seeing us as experts in our own experiences. For instance, according to Devon Price, being autistic can still make it hard for a clinician or therapist to get licensed, despite their relevant experience of actually experiencing autism.
Given all that, it’s fair to be wary of taking neurotypical “expert” opinions as the final say on our own insides. This is especially true because (I’ll repeat myself here) autism, unlike a condition like diabetes, or preeclampsia, cannot be diagnosed in any other way except by the autistic person sharing their experience. I’ll say it again: There is no brain scan, DNA test, or blood draw that can “prove” you’re autistic—it’s just what’s inside your head.
Which: maybe you and I are the best judges of that, not the doctor asking us diagnostic questions?
All this to say: we should both seek out medical/psychiatric advice, AND question the infallibility of it.
If learning about autism makes you feel eerie déjà vu, than TRUST THAT INSTINCT even if the experts say it ain’t so.
Still, many of us, myself included, have done the risk/benefit calculations and realize that official diagnosis is the best solution for us. Trust your own gut, no matter what.
(For a good overview of the medical history of autism, read Steve Silberman’s excellent Neurotribes.)
“What does it matter if you have an official diagnosis? It’s just a label.”
An online friend had a psychiatrist say this to her.
You know what another label is? “United States citizen.” All those words are made-up constructs. A “citizen” is a legal definition, not a state of nature. The United States is just a bunch of lines somewhat randomly drawn on terrain, and not even real lines (except for those dang walls) but pretend ones!
Yet no one argues that the label “United States citizen” is useless, or wonders why people might want to use the label. It quite literally opens doors and makes life easier (or more difficult) for hundreds of millions of people.
There are clinically diagnosable autistic people who do not want or need the label autistic to describe themselves. I salute them and their particular reasoning. If a label is not helpful to you, that’s fine!
But for them to argue that I should not seek diagnosis because they don’t find the label useful? That’s presumptuous and offensive. It’s even more offensive for someone who has not experienced autism itself to tell me autism is meaningless. They literally have no idea what they’re talking about.
In a different society, we might not need a label like “autistic.” If our society was more comfortable with difference, if accommodations and inclusion and simple acknowledgement were offered freely—or, even better, eagerly!—if not being comfortable with small talk or looking people in the eye were not seen as hostile, if parents taught their children to be patient with kids who were different, if we all watched movies written by and starring autistic people and learned their way of being was fine, if Disneyland did not have background music playing incessantly, if impairment were seen as part of being human, not a reason for pity—if so many things were different and supportive I can’t even imagine them—
Then perhaps we could feel included, feel empowered, feel human without a label like autism. Perhaps we would not whisper “you’re weird” to ourselves every five minutes for forty-five years, every time feeling just a tiny bit more isolated from others and alienated from our own selves.
If you have thought about saying some version of “it’s just a label” to someone saying they are disabled, don’t. Learn more about disability and ableism, and keep mum until you realize you don’t have anything helpful to say.
If you wonder how to take your own experience as a human being more seriously, might I suggest taking my creative personality test? By “creative” I mean any kind of human ingenuity that helps us survive. The test will help you trust your own intuition and SEE your own survival as a work of art. Take it here.
