:: Like so many autistic adults who are diagnosed later in life, my past clicked into focus once I was diagnosed. All of my awkwardness that led to bullying and more—I didn’t realize how much I blamed myself for those things. Why couldn’t I have been stronger? What was wrong with me? I didn’t realize that I never had a chance because I never received support.
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I sought a diagnosis for Autism Spectrum Disorder in the spring of 2020. My testing started before the Covid pandemic began, and it finished after we were all in isolation—which, in itself, was kind of weird—but also so, so apt. What better way for a doctor to assess my social awkwardness than over a medium (video conference) that made us all so much more socially awkward?
Over the years, I’ve been asked by other adults, both friends and strangers, why I sought an “official” diagnosis of autism as an adult. Recently, an insightful person reached out to me and sent me a list of questions that framed the issue coherently. So, I am using her coherent questions to write this essay with hopes that it helps other adults who are also considering diagnosis.
A Preamble:
A couple of weeks ago, an autistic adult approached me about diagnosis shortly after I published an essay about adult diagnosis in Catapult Magazine. She told me that she isn’t “really” autistic because she is “only” self-diagnosed. So, before I get started, let me mention that I’m adding one, very important question of my own at the end of this essay. This question is so important that I’m going to address here, now, at the beginning: Self-diagnosis is valid. If you are self-diagnosed, you are autistic and a member of our community. I support you.
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What prompted you to seek a diagnosis as an adult?
There are many reasons for this, but they are tightly braided together. When my children were younger, I saw myself in them so much, like we were three pearls spat out by the same oyster. Each of us had our own imperfections and unique bits of beauty, but in the end, we shared the same glassy nacre. We were nerdy and strange and had so much fun being our own little club, but we also struggled against the limits that the world thrust upon us. When my kids suffered, I felt that suffering too because it was so familiar.
When they were diagnosed with autism at the behest of our public schools (one of the few useful things the public schools my kids attended have ever done for us), I looked at myself, and everything clicked into place. Suddenly, my autism was so obvious. And so, in retrospect, was theirs. Obviously we were autistic. Obviously. The only thing I didn’t have was a formal diagnosis. Therefore, I looked into getting one.
Have you spent your life believing something was wrong with you?
I always knew I was weird. Always. Middle school crushed me; the bullying I suffered was galactic in scale, even though I was gaslighted at home, told, “Everyone gets bullied” and “You’re not special.” These words only made me more vulnerable to being bullied, not less.
Anyways.
In high school and college, I struggled with personal boundaries, especially with boys. I ended up suffering sexual assault and many sexual encounters with “empty consent” as Melissa Febos puts it in her book Body Work.
In my 20s, I dated men who were on the border of abusive. Okay, maybe they were actually abusive, with multiple partners criticizing my body (“maybe I’d find you attractive if you’d lose weight”), getting drunk every night (and sometimes peeing in the house), “allowing” me to handle all logistics of our lives and never doing the same for me, constantly insulting my intelligence (in retrospect, out of insecurity), and occasionally punching the wall by my head. I’m not speaking of one partner in particular, but of all of my serious partners in my 20s.
Once relationships ended, I always blamed myself for letting these things happen to me and swore they never would again. But I couldn’t make them stop, and so I blamed myself again. Autistic women—who are far more likely to go undiagnosed—struggle with boundaries, including relationships and sexual boundaries. We struggle in part because as autistic people we struggle with social norms.
But we also struggle because of the abuse we suffered as children, even at the hands of people who love us (like parents). These people didn’t understand us as children, and so they pushed through our boundaries trying to force us to be “normal” and we lost track of the line between where our bodies stopped and the world began.
The only reason I ended up with a caring, supporting, loving, always-thinks-I’m-beautiful partner is luck. I tell you this to give you hope. If you are struggling to find a partner who loves you and support you, you can. Just don’t settle for anything less.
What steps did you take along your path to diagnosis?
I’m lucky that where I live, in Chapel Hill, NC, we have the TEACCH Autism Program, part of the University of North Carolina Medical Center. One day, I literally just called them on the phone and asked if I could get diagnosed. I was put on the wait list, and then they called me one day to set up an appointment. Also: they took insurance, relieving what can frequently be an immense financial burden between an autistic person and a diagnosis of autism. This expense is one of the reasons that so many adults must self-diagnose.
One reason I reached out to TEACCH, however, is because there was no other place that diagnosed adults. Because autism is a “developmental disorder,” diagnosis focuses on children. There were endless places to get a child diagnosed, but none of them would diagnose adults. TEACCH was my only choice. This lack of testing facilities for adults is another one of the reasons that adults must self-diagnose.
Where/how was your assessment given?
There were three steps: the initial screening, the full testing, and the final results meeting. Because autism testing requires knowledge of your development as a child, I had to find someone who knew me well enough as a child to report on my behavior then. This posed a challenge because I didn’t feel comfortable asking my parents. (I love them, but … no.)
I’m lucky that I had another family member who spent a lot of time with me as a child, and as an adult, and she agreed to be my “witness,” as I called her. We both had to fill out some screening forms, and then we headed over to TEACCH for an appointment with a psychologist. The doctor was adorable, caring, and supportive. Indeed, I was shocked by how wonderful she was. Her demeanor helped me relax, which was so important for the testing experience. In retrospect, I now realize that I would have masked the entire time if she hadn’t put me into a safe mental space.
After the initial screening, I was invited to do the full testing, which took two long days. There were puzzles, word games, number games, and other things like that. Some were so frustrating for me that I actually cried trying to solve them. Before the testing, I promised myself that I would let myself be myself—at the time, I didn’t know the word “masking,” but I knew I did it. I also knew that I wouldn’t be able to give an accurate picture of myself if I tried to suppress who I am. Hence the tears of frustration. (The “dysregulation.”)
The third and final session was a meeting to share the results with me.
What, if anything, has changed since your diagnosis?
Like so many autistic adults who are diagnosed later in life, my past clicked into focus once I was diagnosed. All of my awkwardness that led to bullying, sexual abuse, relationship abuse, and more—I didn’t realize how much I blamed myself for those things. Why couldn’t I have been stronger? Or smarter? Or savvier? Why couldn’t I have seen how stupid my decisions were? What was wrong with me? I didn’t realize that I never had a chance because I never received support.
I didn’t have the supports that my own children receive now—neurodivergent-centered therapy, parents who understand and support them, and a schooling situation that affirms who they are and allows them to thrive. My parents tried to support me, but I was basically from a different planet, and they didn’t know how.
Even in my 30s and 40s I struggled with social awkwardness. I just thought I was as social failure. That was the narrative that started in my house when I was a child, and I bought into it. I still struggle with awkwardness, but autism helps me understand it better. Most importantly, it helps me stop blaming myself for failing to act “normal.”
The strange (or not-so-strange) part is, I would never treat my children the way I treat myself. The negative self-talk I use on myself can be brutal. For my children, I’ve always been supportive and loving of their unique ways of approaching the world. I need to learn to be that generous with me.
It is true that my own sense of my identity has been validated by my “official” diagnosis. I wish everyone had access to testing, or that self-diagnosis could provide such a sense of validation.
What are the steps I need to take to receive my own assessment and diagnosis?
The hardest parts are these: Finding a place that will diagnose adults. And finding the money to pay for it if they don’t take insurance or if you do not have insurance.
You will likely need an adult who knew you as a child to act as a witness, as I mentioned above.
What about self-diagnosis? Is that valid? I feel like I’m not *really* autistic. I feel self-conscious calling myself autistic. Any advice?
You are autistic. Full stop.
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