Seeking the Autism Diagnosis

The Current Quest for Identity and Community

Rachael Goren
Magazine Issue
September/October 2023

“I’ve always felt like there’s something different about me,” my client Melissa says. “I’m ‘sensory sensitive,’ and it seems like everyone else has a social rule book that I never got.” Then, she says something else I’ve been hearing a lot lately: “I think I have autism.” We’re on Zoom for our initial consultation, and Melissa is making strong eye contact, as much as one can in teletherapy. As she speaks, she uses gestures and facial expressions. Her vocal tone rises and falls, conveying her feelings and struggles. Since her verbal and nonverbal modes of communication are integrated, she appears neurotypical. Preemptively, she explains that masking, which involves mimicking neurotypical behaviors to hide her neurodivergence, is her superpower.

I’m a clinical psychologist and the director of training at an integrative multidisciplinary assessment practice, where I conduct consultations, assessments, and testing for adolescents and adults presenting with ADHD, autism, learning disabilities, anxiety, mood difficulties, and trauma. We often provide assessments for schools and colleges, as well as for mental health professionals looking to hone psychiatric interventions, medication management, and other treatments. We see a diverse range of clients, spanning class, race, ethnicity, religion, gender identity, sexuality, and education.

Assessing for autism—via the Autism Diagnostic Observation System (ADOS-2), as well as other standardized and research measures, in conjunction with cognitive, neurocognitive, and qualitative tools—has become a large part of my work, but it wasn’t my specialty five years ago, when I joined the clinic. In fact, the practice owners assured me during the interview process that they got few requests for autism evaluations, especially from adolescents and young adults—the population I’d trained to work with.

No one could’ve predicted how dramatically that would change. Today, at least half our clients come in believing they may have autism and wanting a formal diagnosis. Although there’s no official data about the recent increase in people self-diagnosing with autism, numerous publications have reported anecdotal evidence, including The Los Angeles Times (“Why Many People Are Diagnosing Themselves with Autism and ADHD”) and Autism Parenting Magazine (“Self-Diagnosed Autism: A Valid Diagnosis?”). Over the last year, The New York Times, The Guardian, and CBS News have published stories about an increase in self-diagnosing connected to videos posted on TikTok that discuss mental health. When we interviewed presenters for our 2022 international conference, we heard from academics, researchers, and clinicians across the U.S., the U.K., and Canada who were noticing the same trend.

Why are so many people seeking an autism diagnosis? No one can say for sure, but the reduction in stigma around the diagnosis is noteworthy. This is due in part to the neurodiversity movement and autism advocacy groups’ spreading information and increasing understanding. Now, autism communities and neurodivergent folx are being seen and validated like never before.

But here’s the rub: many of the people who come to our clinic seeking that diagnosis don’t meet the DSM-5 or ICD-11 criteria for an autism diagnosis or autistic disorder. They might share characteristics with someone who has autism, but this could simply mean they’re neurodivergent. For example, they might be gifted or have a cognitive profile outside the center of the bell curve. Or, they might have a trauma history or be experiencing significant anxiety. Despite these findings, nearly all my clients hold tight to their self-diagnosis of autism, from which they’ve derived a strong sense of identity and often a supportive community. Walking them back from their beliefs is a delicate act and a daily challenge.

Outside of certain traits, I’ve noticed similarities among these clients. Most of them are white; my sense is most Black and Brown kids aren’t seeking an autism diagnosis as much as white kids. Yet autism doesn’t discriminate, and I know there’s white privilege in being able to explore neurodiversity. Most of these clients are adolescents and young adults who’ve been assigned female at birth or who’ve been socialized as female. Most have higher education and are often exceptionally bright. Many identify as nonbinary, trans, or some other noncisgender, nonheteronormative identity. Many of them have trauma histories and attachment disruptions.

These clients talk openly about their daily struggles, like the crippling anxiety that keeps them from being able to work. They share the sadness they feel in being socially anxious. During the initial one-hour consultation, they’ll often reference TikTok videos and New York Times articles about how autism is underdiagnosed in women and girls. One client gave me a printout of a blog on autism symptoms, which included poor body image, low self-esteem, and disordered eating: she’d highlighted each of these in bright yellow.

Yes, we do autism assessments in our clinic. But there’s another developing dimension to the work—when clients don’t meet the criteria for a diagnosis, we’re learning to understand, support, and help them make meaning from their challenging experiences.

Hard Truths

My client Sarah, whose pronouns are they/them, strongly identified with the autism diagnosis. When I asked them how they’d feel if assessment results didn’t support an autism diagnosis, they told me they’d convince me otherwise—and that if that didn’t change my mind, they’d go to someone else. I spent much of the clinical interview and conversations in between subtests validating how they’d always felt different, but after scoring and interpreting the results, it was clear that their cognitive profile and test results didn’t align with an autism diagnosis.

When Sarah heard the news, they got a deer-in-the headlights look and became teary. Sarah wasn’t looking to get accommodations; they simply wanted to understand themselves better and grow, and the assessment was a huge disappointment. “This isn’t fair,” they told me after a while.

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“Your whole life, people have criticized you, judged you, and told you that the way you feel isn’t valid,” I reflected. “I don’t want to add to your sense of being unseen, unheard, and misunderstood in this evaluation. You deserve better. What if instead of me writing your background history for the report, you write it? It doesn’t even have to be written. If there’s another medium that feels more appropriate for you, feel free to use that. You can take it home and think about it.”

Sarah was still upset, but it was clear this small gesture helped them feel more validated. Two weeks later, a package arrived in the mail. It was a painted vase from Sarah, accompanied by colorful pages describing how each aspect of the vase represents their experiences and history. It’s the most beautiful and emotional background history ever to be included in one of my reports.

Another client, 15-year-old Max, who uses the pronouns he/him, had recently come out as transmasculine and identified as autistic. His parents wanted to support his exploration of himself, but were baffled by his attachment to autism. After only 10 minutes of talking with him, he demonstrated strong communication and social interaction abilities, and although it was evident that our standardized autism measures wouldn’t place him on the spectrum, we did the assessment anyway at his parents’ request.

Before we began, Max flashed a warm smile. “I’m anxious,” he told me. “I know I’m different, and I’m worried you won’t be able to tell. Nobody understands me.”

I nodded, thinking back to when I was 15 and had that feeling too.

Following the assessment, we did what’s called an interactive feedback session. I drew a bell curve on a piece of paper and showed it to Max, explaining how neurodiversity can be understood as outside of the center of what’s considered normal. I made a dot in the upper fifth percentile. “Your intellectual abilities place you here,” I told him. “You are different. Most people don’t understand you. Your test results say you don’t have autism, but there are valid reasons why you feel the way you do.”

Max was noticeably surprised but accepting.

His was a gentler reaction than I’d gotten the day before from my client River, also a teenager, when I’d told him he didn’t meet the criteria for autism. He became angry and pulled the hood of his sweatshirt over his face.

“What tests are you using?” he shouted. “How do you interpret them? Don’t dumb it down—I want to know everything.”

I contained my frustration at having my expertise questioned and tried to figure out a sympathetic way to explain my nearly two decades of education, training, and professional experience. I felt compassion for River, who’d suffered abuse and neglect, but he was convinced those things had nothing to do with the fact that he felt different. “I am autistic,” he’d insisted. “This is who I am.”

The Desire for a Diagnosis

Many clients who come to me seeking an autism diagnosis point to behavior they think isn’t normal. I try to reassure them that in their late teens and early 20s, they don’t really have a frame of reference for what “normal” is. I explain how young adults these days spend considerable time separated from their peers, and how isolation weakens our socializing muscles and can disproportionately affect people at their stage of life. I tell them that anyone who’s isolated—or who’s experienced attachment trauma, or who lives in a society where mental health crises are rampant—would be thinking, feeling, and behaving the same way they are. In addition, if they equate their unusual intellect with autism, I tell them that giftedness and intelligence are their own type of neurodivergence, not necessarily autism.

Unfortunately, I’m fighting an uphill battle. These kids and young adults often hear different messages from their peers and social media, whom they’re likelier to trust than me. Nonetheless, in validating each client’s experiences of feeling different, I hope they leave the assessment with a new way of making sense of themselves.

Within five minutes of my initial consultation with Natalie—who shared how she felt like she’d never fit in, didn’t have close friends, and didn’t like eating in the school cafeteria because it was too loud—I’d observed enough of her nonverbal communication and empathic comments to know that the ADOS-2 wouldn’t place her on the spectrum. “Natalie,” I told her, “I don’t think testing would be in your best interest. Honestly, from what I’m hearing, I don’t think it’s going to come back with a positive result.”

“Then your test is biased, just like every other medical test,” she exclaimed, clearly upset.

“Yes, there are limitations to the test,” I explained. “And yes, you’re right that these kinds of tests can be discriminatory. They were designed for criteria that we know isn’t inclusive, and they’re at least 15 years behind current clinical practices. But that doesn’t mean there aren’t other ways of understanding your experience. You are likely neurodivergent, and based on the academic test results from your school, you are clearly gifted.”

Another client, Becca, rather than getting angry, began to cry when she learned she wouldn’t be getting an autism diagnosis from me. “You don’t understand,” she said. “All my friends are autistic, and they’ve been telling me for months that I am too. I don’t want to lose my friends. For the first time in my life, I have friends!”

I considered asking whether these friends had been formally diagnosed, but instead, I sat with her in her disappointment. After the initial shock wore off, she looked up at me. “Why is making friends so hard for me, then?”

Her question hit me like a ton of bricks, and I felt a lump in my throat. “Because sometimes, Becca, life is really hard,” I replied. “And it isn’t fair.”

After Becca left, I couldn’t help but think of my eight-year-old daughter and the sadness and frustration she’d feel if she were suddenly excluded from her peer group. I thought of my own community, like friends from synagogue, and how it gives my life meaning. All of us have a desire to belong.

The Heroes of Their Stories

As someone who isn’t involved with the autism community on the same level as many of my clients, I sometimes feel uneasy steering them away from a diagnosis they know so much about. I find myself wondering, Who am I to say what it really means to have autism, or what it feels like to be autistic? I’ve consulted with therapists who also work with clients on the spectrum—or clients who believe they’re on the spectrum—and many share these doubts. But after considerable soul-searching, I’ve realized something: if our clients have derived a sense of self, identity, and community from associating with a self-diagnosis, a formal diagnosis shouldn’t change that. They know their truth and will live it, regardless of what the medical model says.

My client Jacob, a 23-year-old trans male, didn’t meet the criteria for autism based on the standardized measures. “Can I still call myself autistic?” he asked. “I think it helps people understand me, and it feels right.”

“Autism may be a diagnosis,” I responded, “but it can also be an identity, and one you give yourself can be just as validating as one that comes from a professional. If I told you that you weren’t actually trans,” I continued, “would that change how you view your gender?”

“No,” Jacob said with a smile.

At our practice, we’ve begun exploring alternatives to assessment tools like the ADOS-2, which many clients find invalidating. As part of our assessments, we ask clients to write a personal narrative that considers their neurodivergent qualities as strengths. It’s a way to help them cultivate self-compassion and see themselves as the hero of their story, countering the negative stories they’ve been telling themselves or have heard from society.

We hold virtual group workshops that offer clients who don’t meet the criteria for an autism diagnosis a space where they can connect. In essence, we’re recreating the community many of them found when they self-diagnosed. Participants offer each other support, share how others have labeled them, and embrace their vulnerabilities as strengths. While I’m present during the groups, I let the participants’ words do the work, and bear witness to their meaningful moments of vulnerability and connection.

At the end of these workshops, we invite participants to share a creative expression—be it a painting, poetry, tarot cards, collages, or a video—that represents the transformation of their self-narrative. Sometimes participants start out shy or say they’re embarrassed, but the attentiveness of their peers and the positive reinforcement they receive quickly buoys them. Their projects reflect on the beauty and pain of being different and feeling misunderstood. They’re filled with powerful metaphors and imagery that show how they’ve grown beyond problematic labels society has foisted upon them. One client shared a collage of a dragon, made with magazine clippings and glitter. “This represents me,” she said. “People often think of dragons as scary, but they’re beautiful. They have fire inside them. And I do too.”

Here, in this safe space, there’s a common language and identity, a group of compassionate witnesses. Even without the diagnosis they’d been seeking, people leave feeling hope. It’s a far more validating experience than any assessment I could provide, taking me back to my early days as a clinician, when I first felt the power of clients sharing their stories and feeling seen.

Our work as psychologists often involves a degree of gatekeeping. It’s a responsibility I don’t take lightly. But seeing more and more children and young adults self-diagnose and run up against the medical model—which focuses on symptoms, not underlying causes—has me wondering when society will hear what these clients have to say. This uptick in self-diagnosing feels to me like a movement: a large group of people need to be heard, witnessed, and validated.

I may not fully understand what my neurodivergent clients are going through, but I can—we all can—do something beyond doling out a clinical diagnosis: sit with them as a compassionate witness.


Rachael Goren, MPH, PsyD, clinical psychologist, is the director of training and outreach as well as a co-owner at Learning Solutions, an integrative multidisciplinary assessment center. She specializes in LGBTQ, gender diversity, ADHD, and women’s and reproductive health issues. Contact: