"The beauty and complexity of personality gets reduced to symptoms"

My conversation with Puzzle Therapy

The Man of Confusion, Paul Klee

Puzzle Therapy has worked as an interventionist in school and home settings with children and adolescents with various special needs, including autism, for over 25 years.

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Eliza: So we had a fascinating conversation the other day and covered a lot of ground. I was hoping we could revisit some of those topics here. We spent a lot of time exploring the interaction between autism, gender dysphoria, and trans identity, so maybe we can start by taking a closer look at the ways autism is diagnosed have changed over time and how that’s contributed to overdiagnosis and rampant self-diagnosis today.

Puzzle Therapy: I really enjoyed our conversation! You had such good insights and gave me so much more to think about.

I feel like I have to start with a few disclaimers…

I am not saying all autism diagnoses associated with milder traits are a problem or incorrect. And—at least in the US—insurance coverage and school accommodations live and die by an official diagnosis, so sometimes that is necessary.

I am also not saying that this is the only type of autism content and info out there. But the “neurodiversity” movement dominates online conversations, and the algorithms can very quickly start showing you only this type of content, which gives very limited and often incorrect information about autism.

Now that I have that out of the way…

There are really multiple angles to the question of autism, especially in our corner of the world with gender. It is well documented that children and young adults with autism or autistic traits are overrepresented in this new cohort of young people identifying as transgender, especially among the ROGD [rapid-onset gender dysphoria] teens.

But there is another side where the autism diagnosis itself may be trying to meet social and psychological needs that are better supported in other ways.

Many of the problems with self-diagnosis and the expansion of definition come down to the fact that the criteria for an autism diagnosis are subjective. What does it mean to have “autistic traits” vs. full-blown autism? Who decides where those lines are?

The lines have moved quite a bit from the first DSM in 1952 when autism was considered a form of childhood schizophrenia. It wasn’t until the DSM-III in 1980, that a diagnosis of “infantile autism” was created that was separate from childhood schizophrenia. The DSM-IV (1994) introduced subcategories like Asperger’s syndrome for individuals who showed traits of autism but no significant language or intellectual delays or impairments. This introduced the idea of a “higher-functioning” autism, distinct from “classical” autism with its more significant impairments.

Then, in 2013, with the DSM-V, all subcategories were removed and replaced with “Autism Spectrum Disorder” and the domains for diagnosis were reduced to just two: persistent deficits in social communication and interactions and restricted and repetitive behaviors. The requirement for language delays and impairments was removed. Autism was now a spectrum disorder that could have a broad range of presentations.

Another important piece is the recognition that autism can present differently in girls than it does in boys, which began to gain traction in the early 2010s and has become more prominent in recent years. It is true that core autism symptoms may look different in girls, such as a special interest that looks more “female-typical” (Barbies, horses) than the more well-known stereotypically male autistic interests (trains, dinosaurs, lining up objects). Autistic girls also tend to have more interest in social interactions than boys. However, the concept of “presents differently in females” can leave a lot of room for interpretation and overlap with other diagnoses, and that feeds into the issues we have been talking about.

This history of continuously moving that diagnostic line is how we got from rates of autism at four to 10 per 10,000 children in the 1980s, to one in 150 children in 2000, to one in 36 children today. There are legitimate arguments to be made for and against different placements of the line, but how do we decide?

When we spoke, you mentioned the way key features of autism have been redefined in ways that go far beyond mere concept creep. Could you give some examples of what you have in mind?

This redefining of key features of autism has allowed the explosion in both self-diagnosis and even professional diagnosis.

The most frequent example I see is broadly expanding what counts as stimming and sensory issues to include things that almost all of us do, which allows many more people to meet the DSM criteria for “repetitive and restrictive behaviors.” Now, things like nail-biting or fidgeting can count as autistic stimming. Disliking the feeling of sticky things on your fingers or wanting to avoid loud, crowded places can count as autistic sensory aversion.

Another one is redefining echolalia. Echolalia is the involuntary repetition of words or phrases common in autistic people, for example, the autistic child with extremely limited language skills who repetitively recites entire scenes of Disney movies. Now I often see listening to a favorite song or watching a favorite movie on repeat or having a song stuck in your head cited as examples of echolalia.

I recently saw an Instagram content creator say her habit of leaving a party without saying goodbye was engaging in “autistic eloping.” Autistic eloping is the very serious and potentially dangerous compulsion to wander that some autistic children have. It can sometimes result in tragedies like accidental drowning. The caption on her video is especially sad to me: “When my silly personality trait ends up being a symptom yet again 😞” The beauty and complexity of personality gets reduced to symptoms.

Another shift is in the concept of “masking.” The term masking wasn’t really used until the mid-2010s, although experts did talk about “compensatory strategies“ in which autistics, often girls with Asperger’s, would study and try to mimic the behaviors of their non-autistic peers and hide autistic behaviors like stimming that made it harder to fit in. Now it is very common to see content creators talk about “unmasking their autism” as a necessary part of discovering their “true selves.” There are a lot of similarities with the concept of “egg-cracking” and discovering your true gender.

With this level of redefining and expansion of autism traits, many people can find a way to make the diagnosis fit. It is much like gender dysphoria, where any discomfort can be evidence of dysphoria.

I’ve noticed this tendency, too, and in many ways it seems like a sign of insecurity and doubt that autism really is the explanation—so a young person goes overboard claiming that they experience every symptom of autism, even if they have to redefine what autism is, in order to shore up a fragile identification.

Yes, there definitely seems to be a need to convince others and themselves that this identity or diagnosis fits. Even in the more classical cases of autism, a person won’t necessarily have every autistic trait. I’ve seen assurances that neurotypical people don’t spend their time wondering if they might be autistic, which is very similar to the script that people who aren’t trans don’t spend time questioning their gender. It is understandable that people are desperately looking for something that explains their struggles, especially if they think it offers an end to feeling there is something wrong with them and provides a community that understands them. Of course they will be very protective of whatever explanation they come up with and defensive towards anyone who challenges it. I don’t think people are faking, but I do think we need to consider a potential iatrogenic effect or unconscious need to “live up to the diagnosis” may be affecting some people.

One of the common threads between gender and the online culture that has grown up around autism seems to be this desire for a label that explains what’s wrong with you and tells the world how to perceive and interact with you. Could you say more about what you think is going on there?

It’s such a natural human desire to understand who you are, especially when you are struggling with the challenges of life or your own insecurities. Struggling with school, work, relationships, and balancing all the demands that are placed on you can be overwhelming. People have a tendency to think everyone else is doing it better than they are and no one else feels like they do, but they also don't want to be alone in that experience. It’s natural to start looking for answers and people who understand us. It feels good to think you have found answers, to be validated and understood. I think this is what makes us vulnerable to a diagnosis—any diagnosis—becoming an identity.

I also think there are specific times in our lives when we are especially vulnerable to this.

There’s a familiar and well-documented increase in neuroticism and negativity, especially negativity aimed at the body, in females at the onset of puberty. Literature, and film provide many examples of messy, moody, dramatic, and "difficult" teenage girls: Ally Sheedy's character in The Breakfast Club with her dark mood and odd, off-putting behavior; the highly emotional Marianne Dashwood in Jane Austen’s Sense and Sensibility; and the comical Katie Kaboom with her (literally) explosive mood swings from the Animaniacs cartoons. Then there's the issue of how almost all teenagers could be diagnosed with Cluster B traits as part of normal adolescence. For some girls, this period of emotional dysregulation is felt and expressed more strongly and in a more challenging way, and there is often not a lot of sympathy for these girls from adults or their peers. I think there is shaming and sometimes even contempt directed at these highly emotional, borderline-ish teen girls that some of them are trying to escape through a more "respectable" diagnosis of autism, gender dysphoria, or even chronic illness (a different conversation with very similar themes). What would happen if society—and the mental health profession—provided more compassionate, patient, and thoughtful support for these young people as they go through this developmental phase?

We’ve explored the appeal of labels to young people who are struggling. Ultimately, these are highly consequential self-understandings and my sense is that—if a young person has some autistic traits but without significant impairment—it would be better if young people did not come to understand themselves and their difficulties in those terms. Do you have any ideas for how adults can help young people hold these identifications more loosely and navigate their challenges more productively?

There are many of us that share the frustration and deep concern with how this type of online autism activism that centers the experiences of the highest-functioning people erases the experiences of more severely affected people, and, as a result, makes it even harder for them to get the support and services they need. Freddie de Boer just wrote a really good essay on this, and Amy S. F. Lutz’s book Chasing the Intact Mind does an excellent job showing how already scarce resources for severely affected adults are being targeted and lost because of this type of activism.

But another side to this is that those with “higher-functioning” autism and autistic traits are also not getting the support they need. Autistic traits can create very real challenges and they deserve support that actually helps.

The autism social media accounts many young people are following focus on the “autistic experience” and grievance-sharing. They focus on autism as identity, an identity these young people define and an identity whose boundaries they police against the ‘neurotypical’ and against parents of severely autistic children. When they offer coping strategies, I find it ironic the advice they suggest would be seen as unhelpful and dismissive for any other diagnosis: Go play with some fidget toys, take some breaks, avoid things that are hard for you, just be yourself. Imagine saying that to someone with depression or a physical disability?

Even worse is when they are fed messages of fear or steered away from insights and supports that could actually improve their quality of life.

So what would I advise parents with a teen or young adult whose autism diagnosis has become their identity and is limiting rather than helping them?

I don’t think it helps to argue with the diagnosis, especially when so much has been invested in it. Plus, the diagnosis itself is not necessarily the problem. It’s what is done with the diagnosis. For example, Christina Buttons has shared how receiving an Asperger’s diagnosis in her 30s helped her. But she has also said she is cautious not to let any diagnosis define her identity and focuses on accommodating symptoms so she can live the life she wants.

Try to understand what the young person is getting from the diagnosis. Is it a sense of community? An attempt at understanding who they are that resulted in falling down a social-media rabbit hole? An explanation for why they are struggling in some area of their life? They may actually be struggling quite a bit with their autistic traits even if those traits don’t rise to the level of a diagnosis. If we can get a sense of what they are seeking from the diagnosis, we can start helping the young person expand their understanding of this need and ways to meet it. Remember, they will need to hear a lot of understanding from us before getting to a problem-solving mindset.

The key is helping them to understand the difference between focusing on standing on their strengths and supporting areas of need rather than focusing on the diagnosis.

For example, are they struggling in school or at work? Talk of “autistic burnout” may actually be a way of expressing struggles with time management, study skills, communication with teachers or coworkers, and managing work-life balance.

Are they fearing the approaching responsibilities and demands of adulthood? Can their specific fears be identified and addressed? Would they benefit from a more structured and supported approach to taking on adult responsibilities?

Do they need help making friends and improving relationships? Or maybe they need help finding ways to connect to people offline, in the real world?

Do they need help seeing all their unique qualities through a wider and more nuanced lens so that not everything is reduced to a symptom and a need to validate a diagnosis?

Do they need help understanding and moving forward from difficult experiences from their past, such as bullying or isolation?

Perhaps the young person is struggling on a deeper level with things like relationships and emotional regulation. You asked about young people without significant impairments, but sometimes they are really struggling in some way, even if it isn’t best explained by autism. We know there is significant overlap between autism and borderline personality disorder traits, ADHD, and anxiety. Of course, we are not trying to go deeper into labels and diagnoses, and the fact that there is so much overlap among these diagnoses is why we need to always keep in mind the problems with these labels and why we need to hold them very loosely. But many have found dialectical behavior therapy (DBT) extremely helpful, and there is even preliminary research showing it can improve quality of life for people with autism (if you need that opening to discussing this).

This is what I mean by supporting the needs, not the diagnosis. Unfortunately, I am not sure if we can fully move past the psychological and systemic power that comes with a diagnosis. There are very real issues around accessing insurance coverage and school accommodations, as well as the ways a diagnosis can change the ways others view us. But we can help people see a diagnosis as one of many tools they use to live the life they want, not an identity that defines that life.