About this post: We explore the reasons why some people don’t believe when others disclose their autism and learn how misconceptions and stereotypes play a role. We also explore how someone can support a friend who self-discloses autism.
There are certain identities we hold close to ourselves, careful to whom we disclose, wary of how we will be perceived. We worry that we may be discounted, unsure of how we might respond if we are, in fact, invalidated.
Above, insert any one of many marginalized identities, and many of us can identify with the feeling of doubt around self-disclosure. For example, there was a time (and still is in many places) where disclosing being gay could be followed by doubt, and “reassurance” that it wasn’t true because someone’s external appearance masked their underlying identity. As society has become more aware of the fluidity and diversity of gender and sexual identity, it’s (hopefully) pretty clear to see how invalidating this experience would be for someone coming out.
However, we’re still not where we need to be as a society around issues of gender and sexuality. Although of course it’s not exactly the same – another aspect of identity that more people have become more open to talking about is their own mental health diagnoses and mental health generally. But we’re also still not where we need to be as a society around issues of mental health, particularly regarding the autism spectrum.
When someone discloses that they’re on the autism spectrum, they are often met with disbelief from friends, family members and even other mental health professionals. Repeatedly facing this situation can make a person doubt and question themselves. It can make them decide to continue masking at their own expense. It can push them into corners where they can’t thrive being their true selves.
Why don’t others believe you’re on the spectrum?
1. Lack of professional training around autism
First, there is such a lack of education around neurodivergence and autism, even among mental health professionals. In my own training (even during a fellowship in child and adolescent psychiatry!), I had to go out of my way to seek training outside of our regular curriculum. Many clinicians just don’t know enough about autism and the ways in which it appears on a spectrum. If clinicians aren’t well educated, they’re not able to educate others, and unfortunately when clinicians can’t, misinformation leads the way. It’s hard for everyday people to know what information out there is accurate and credible.
2. Difficulty recognizing how autism evolves across development
Autism is one type of way in which people experience neurodevelopment. Our brains are constantly developing, evolving, and even changing as we interact with the world. Even in the same individual, signs of autism look very different at age 2, at age 10 and then at age 20. Let’s say a toddler rarely looks at faces and even more rarely makes eye contact. That same kid at age 20 might appear to make pretty good eye contact, but that doesn’t rule out autism. More importantly, it doesn’t mean that the person’s brain is processing facial information the same way a neurotypical person’s brain takes it in. Many common signs of autism are harder to see overtly as people get older because they have figured out how they’re “supposed” to act (aka masking). But even when they’re masking, that doesn’t mean the process for how their brain got there is the same as it is for someone else.
Also, we all gain skills and perceptual abilities during development. We all get better at certain things, like reading people or situations. Again though, our processes of how we get there can be very different. Someone with more neurotypical social abilities may be able to read the room and appear to say the “right” things or act the “right” way. Someone else with autism may outwardly look very social at times, but their process to getting there could have been very different than a person with neurotypical social abilities. Maybe they have spent countless hours memorizing how to act in certain situations, maybe they have rehearsed for hours at end. Maybe they have countless algorithms memorized for countless possible situations. It’s possible they might look very socially adept in moments, but maybe their process was so taxing that they socialize minimally because they crash if they’ve pushed themselves too much.
3. Assuming autism presents a certain way
A few years ago, the DSM recategorized multiple neurodevelopmental presentations under the larger umbrella of being on the Autism Spectrum. The idea of “spectrum” breaks down a false monolith, and points out the diverse range and variable intensity of people’s experiences.
Many people assume things are black and white, all or nothing. Clinicians asking parents for a developmental history may ask a question like, “Did your child play make-believe?” and when the parent says, “Yes they did,” the clinician could incorrectly assume that the milestone was fully met. But since things aren’t black and white, frequently a child could have pretended they were Wonder Woman, but played the same scenario out daily over and over again, showing a smaller range of ability to pretend. (Note: Pretend play is a marker of a few different cognitive abilities, so clinicians often ask parents about it). Because someone’s experience isn’t all or nothing, understanding nuances becomes incredibly important. People on the spectrum don’t check off every criteria, and even the ones that seem “not checked” could be present in nuanced ways.
4. Underestimating the prevalence and significance of masking
Diagnoses are usually made based on what can be seen on the outside, but people on the autism spectrum are constantly performing and masking to fit into a neurotypical world.
Before left-handed scissors were made, I imagine that left-handed people still used scissors, but maybe when forced to adapt to non-inclusive processes, they didn’t cut as straight, or maybe they had to put in much more effort to achieve the same result as a right-hander. Maybe some of them figured out ways to avoid situations that would expose this difficulty, and so others never noticed their experience. Many people on the autism spectrum save up their emotional and cognitive reserve for certain situations so that they can mask and appear more neurotypical. If they’ve pushed themselves too far or too long, they are often later exhausted, emotionally and cognitively. When someone says, “But you don’t seem autistic,” after an autistic person self-discloses, it invalidates their experience, invalidating both who they are and also recognition of the toll taken by having to mask.
How can others be more accepting of autism?
1. Remember that autism itself doesn’t require treatment
Autism is a neurodevelopmental condition. It’s about the way an individual processes information and about how their brain responds to that information. It’s not something that needs a cure. People on the autism spectrum experience mental health challenges as we all do. While the treatments that are most helpful to them may differ at times from neurotypical treatment approaches – autism itself, the specific and unique ways that someone’s brain is wired, doesn’t need to be cured or treated.
2. Respect the diversity of autistic perspectives
Remember that each autistic individual is a distinct universe unto themselves. Avoid premature judgments or sweeping generalizations.
3. Ask about preferences
Ask the person whether they have any preferences they want you to know about, like around ways of communicating or sensory sensitivities or anything else. Show that you understand that they have a unique experience, and that you want to know about and be respectful of them.
4. Listen actively and be supportive
Autistic people can experience heightened anxiety and stress levels, particularly when they’re not able to be in their element. being a compassionate listener, offering a sympathetic ear when they need it most.
5. Avoid interjecting opinions
Avoid sharing unsolicited opinions, letting the individual seek their own path to either self-identifying or to seeking a diagnosis from a professional trained in evaluating the autism spectrum.
Embracing neurodiversity as an accepted identity
Neurodiversity is not a challenge to overcome; it’s a strength to celebrate that doesn’t need to be masked or concealed. As more and more people identify and disclose being on the autism spectrum, we hope that we’re moving towards a more inclusive world where each individual, regardless of identity, can feel seen, recognized and valued.
Written by Tejal Kaur, MD, founder and medical director at graymatters
**At graymatters, we provide clinical evaluations that can include assessment of the autism spectrum. People seek assessment for many reasons, some of which are: 1) documenting autism to obtain state services or accommodation on professional testing (SAT, GRE, etc.); 2) receiving a diagnosis that can aid in school, college or work accommodations; or 3) receiving an assessment for personal reasons, to affirm a self-identification or for the purpose of informing treatment approaches (sometimes medications or types of therapy may be adjusted or adapted to be more beneficial in people on the spectrum). At our practice, we can offer services for all three reasons above, although we can be most helpful to people for reasons 2 and 3. We’re happy to discuss by phone what would be the right fit for someone.**
