Why many people are diagnosing themselves with autism and ADHD

This story was originally published in Group Therapy, a weekly newsletter answering questions sent by readers about what’s been weighing on their hearts and minds. Sign up here to get it in your inbox.

A diagnosis of autism, ADHD or both can be life-changing. Although there’s still stigma, misconceptions and discrimination tied to both conditions, these imperfect-yet-specific labels can validate what neurodivergent people have sensed about themselves all along — that this is just how they’re wired, and that their challenges aren’t a personal failing.

Unfortunately, we don’t live in a world where such validation is distributed evenly. Testing for autism and ADHD is expensive; the average cost of an autism evaluation ranges from $1,000 to $2,000, although costs can vary widely depending on your insurance coverage and where you live.

And even if you have the means to get evaluated, you could be misdiagnosed or dismissed. As autistic social psychologist Devon Price points out, the diagnostic tools weren’t designed with a diverse patient population in mind. “The procedure for diagnosing autism was designed with young, white, cisgender male patients with visibly obvious symptoms in mind,� Price wrote on his blog. “To this day, it remains very common to be turned away from even being assessed for autism for being too old, too feminine (or effeminate), too socially appropriate, too good at eye contact, too Black, too brown, or too trans.�

In response to these barriers, a growing number of people are using social media and knowledge from those with lived experience in online communities to diagnose themselves with autism and ADHD without a psychologist’s rubber stamp, either out of necessity, principle, or both.

For our third and final piece in our series on neurodivergence, we’ll explore what people stand to gain through self-diagnosis, criticism that’s been leveled at people who’ve chosen to do so, and when it may be necessary to seek a professional assessment. You can read our first piece on autism here, and our second on the relationship between ADHD and autism here.

The movement toward self-diagnosis

People have been searching for answers about how their bodies and minds function since the internet’s inception — you’ve probably done that thing where you’re up late at night, Googling your symptoms and inevitably ending up on the hellscape that is WebMD.

And while there’s no good data out there about a potential rise in self-diagnosis of autism and ADHD, it’s become an intense topic of debate in recent years among neurodivergent people — in large part because diverse perspectives on autism and ADHD have never been more accessible or abundant.

“Certainly, for some TikTok users, [neurodivergent] creators helped them connect with diagnoses that had been there all along, and in a perfect world, would have been identified and treated a long time ago,� wrote Lauren Krause for Women’s Health.

I asked this week’s experts what else might be contributing to the growing conversation around self-diagnosis.

For one, many psychologists and primary physicians still have a stereotypical, biased understanding of ADHD and autism that doesn’t match with the experiences of many women, nonbinary folks and people of color, said Sonny Jane Wise, a neurodivergent advocate and author in Adelaide, Australia. “Even if someone wants to go get a diagnosis, there’s such a high chance of someone being turned away or dismissed because of a provider’s lack of knowledge,� they told me. Sometimes the only way to get a diagnosis is to proclaim it yourself.

Changing attitudes toward disability have also contributed to the self-diagnosis trend. More people are embracing their disabled identity instead of trying to hide it or feeling ashamed of it, said Robert Chapman, a neurodivergent philosopher in the United Kingdom who specializes in disability theory. This seismic shift was catalyzed by the autistic self-advocacy movement, which emerged in the 1990s thanks to the internet providing a more accessible, text-based way for autistic people to connect and share ideas, Chapman said.

Lastly, the demands of the modern world have made life harder for many neurodivergent people, Chapman said, pushing more people to consider the particularities of why they feel so overwhelmed.

“Many more jobs require people to focus and stare at a screen for hours each each day, and managers expect their workers to be hyperflexible� and always available — working conditions that can be challenging for autistic people and ADHDers, Chapman said.

Schools impose the same sort of expectations in an attempt to prepare students for the job market, which is why many people begin to consider the possibility that they are autistic or have ADHD while in college, Chapman said.

Why self-diagnosis is valid, according to experts

Wise and Chapman emphasized that self-diagnosis can be an empowering choice for people who would have otherwise not had access to an accurate evaluation, either because of cost or the bias of diagnostic tools.

Self-diagnosis can also be a critical step in neurodivergent people understanding themselves and advocating for what they need to improve their quality of life, Wise said. And it enables people to connect with others who’ve had similar experiences, fostering belonging and acceptance — a vital aspect of wellbeing that many neurodivergent people have been denied.

Still, seeking a professional diagnosis may be necessary for some people.

“I generally think if someone can afford it, it’s good to have a doctor rule out neurological conditions that could mimic characteristics of ADHD or autism,� Chapman said.

Official diagnoses can also provide access to accommodations at work and school — such as extended time on tests, more frequent breaks, and the ability to work from home — and certain medications, like stimulants that help manage ADHD symptoms.

Self-diagnosis criticism

Critics inside and outside of neurodivergent spaces are debating the validity of self-diagnosis.

Some autistic people with a formal diagnosis argue that self-diagnosed people are silencing and diluting the power of “real� autistic people, and taking away resources from those who need them the most.

But Wise notes that self-diagnosed people are unlikely to receive accommodations or funding — like disability benefits — from institutions that usually requires “proof� of these conditions.

Meanwhile, medical professionals and academics have warned against the dangers of people misdiagnosing themselves.

“The widespread popularization of disorders has made them virtual ‘floating signifiers’ for all manner of troublesome, frustrating, and disappointing experiences, from poor performance at work or school to feelings of being beleaguered and overwhelmed by all one has to do,� wrote sociologist Joseph E. Davis for Psychology Today. “Often enough, it is fair to say, the everyday distress, role conflicts, and lifestyle issues that motivate the personal appropriation of these categories have little to do with a mental disorder.�

It’s true that some people may give themselves the label of “autistic� or “ADHD� and later find those diagnoses inaccurate or unhelpful, Chapman said, and this could delay getting appropriate support that would offer relief. But Chapman said they believe this is relatively rare.

“You might notice you have all of these challenges with social relationships, sensory difficulties, or paying attention, and you might think it’s autism for a while — and then you’re like, hang on, I fit more with ADHD,� Chapman said. “Even if you’ve gotten it wrong, you’ve still learned about yourself, your differences and needs.�

Chapman noted that psychology and psychiatry are rife with diagnostic miscalculations. For example, practitioners misdiagnose autism as ADHD, anxiety, intellectual disabilities, and personality disorders.

Though Wise was professionally diagnosed with ADHD and autism at 8 years old, they know what it’s like to fall through the cracks. They were dismissed at age 18 when they sought a bipolar diagnosis from a psychologist. Five years later, it turned out they were right — they really did have bipolar. But they suffered in those intervening years. “When I had manic or depressive episodes I didn’t really know what to do,� Wise said. “I didn’t get the support I needed and I thought it was all in my head.�

Critics of self-diagnosis underestimate how well neurodivergent people know themselves, Wise said.

“I think a lot of people believe that self-diagnosis isn’t valid because they see it as someone looking at a TikTok video and being like, ‘That’s me. I have autism!’ That’s not what self-diagnosis is at all,� Wise said. “Most people who are self-diagnosing are doing so after doing so much research, so much learning, so much self-reflection.�

Chapman made a point I found particularly compelling, which is that many people also wrongly assume there is some sort of “natural limit� to the number of autistic people or ADHDers who can be in the world, and thus the rising numbers of people identifying with these conditions should be a cause for concern.

Rather than diminishing the power of the officially diagnosed, Chapman and other advocates argue that the rise in self-diagnosis benefits all neurodivergent people.

“The more people find a home within our community, the stronger we are. The more that a diverse coalition of people realize they share common struggles and frustrations under ableism, the more we’ll be able to advocate for the broader social changes we require,� Price wrote. “When we embrace an understanding of autism that appreciates diversity rather than bemoaning our supposed defects, we are able to forge lasting bonds with each other, unmask ourselves, and truly believe we are OK okay as we are.�

...

I’m so grateful for every person who lent their voices to this series on neurodivergence, and helped deepen my understanding — and hopefully yours — of what it means to be autistic or have ADHD.

Until next week,

Laura

If what you learned today from these experts spoke to you or you’d like to tell us about your own experiences, please email us and let us know if it is OK to share your thoughts with the larger Group Therapy community. The email [email protected] gets right to our team. As always, find us on Instagram at @latimesforyourmind, where we’ll continue this conversation.

See previous editions here. To view this newsletter in your browser, click here.

More perspectives on today’s topic and other resources

In this poignant essay by Hannah Gadsby, the comedian writes about being diagnosed with autism in their 30s. “I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved. There is no one to blame, but I still grieve for the quality of life I lost because I didn’t have this key piece to my human puzzle,� they wrote.

When neurodivergent advocate Megan Griffin was first on the “Oh, That’s Just My Autism� podcast, she spoke about how she thought she was autistic, but then realized she wasn’t. But plot twist — she actually is! In this episode, Griffin talks about how difficult self-diagnosis can be, but also why it can be a necessary and valid choice.

Other interesting stuff

Dr. Judith Herman, who helped launch the field of trauma studies, has returned to publishing after a long, mysterious ordeal involving a traumatic injury. As she recovered, other trauma researchers moved on with their work, and the field of trauma studies swung toward neurobiology. In her new book “Truth and Repair,� she picks up where she left off in 1992, arguing that trauma is, at its heart, a social problem rather than an individual one.

Apple announced this week that it’s working on an artificial intelligence-powered health coaching service and new technology for tracking emotions. Verge writer Elizabeth Lopatto is concerned about the tech company’s push into the mental health arena. “I am increasingly convinced we need to get the hell outside because we are weird primates who evolved with outside, not computers. We also need face-to-face time, as we all discovered the hard way in 2020. If you want to feel calmer, happier, and more connected, I feel confident that the best way to do that is to log off. No AI can possibly replicate those needs because, as social animals, what we need is other people,� she writes.