Self Diagnosis?!
This is a hot topic, although more so outside of the autistic community. Most autistics who are active in the community are aware of the challenges in acquiring a diagnosis, and sometimes of the risks associated with seeking a diagnosis. Historically, autism has been studied primarily in boys and men (specifically, in white boys and men) which means that girls/women/non-binary folx and people of color, who often present differently, are missed by professionals, unless those professionals have specifically studied this (and, in my experience anyway, that’s rare).
Let’s break it down.
What are some reasons people may not be able to access a diagnosis?
*Access to health care, especially mental health care, especially ESPECIALLY adequate and GOOD mental health care is a huge privilege. One has to have insurance. That often requires a job in the US. And not all jobs come with healthcare. People of color, people living in poverty, and other marginalized groups are less likely to be able to access a diagnosis. Even among those with the privilege to have adequate insurance still often have to pay out of pocket for a good psychiatrist.
*Co-morbid disorders can mask autism. For example, my autism desperately wants me to follow daily routines. But my ADHD is absolutely unable to do so for any extended length of time. Long before I understood my diagnoses I would lament that I wanted routines but could not stick to one. While this is actually a classic presentation of AuDHD (autism and ADHD as comorbid disorders), many professionals mistake this for depression.
*Many tests for autism are too confusing for autistics to score well on. I am not even kidding. It’s a too-common experience for us to hear the question, “Do you take things too literally?” and we take it so literally that we answer it wrong. Because sometimes I do take things too literally, and sometimes I don’t. So as a person who believed I was neurotypical, I thought that because I sometimes take people literally when I’m not meant to, that meant that I should answer no. But the truth is that I’m nearly almost always on edge because I never know if I’ve taken something too literally or not and I feel vaguely confused any time I’m having any social interaction at all because I’m never sure if I’m doing it right. Y’all need autistics to design tests that test for autism because allistics just don’t understand it. Literally. That’s kind of the whole point.
*Marginalized groups are not studied enough in general and this is true in autism as well. There was a long held misconception that autism occurred almost entirely in boys and men; autistic girls and women were considered rare (and there has been very little research regarding trans and non-binary folx). So we are very far behind in gender equity in autism.
People of color are also not often studied and so there is a lack of understanding of how autism presents in these communities. This is particularly cloudy in communities that themselves must learn to mask in order to stay safe. For instance, many Black folx will often “code-switch” or use a different dialect and affect when moving through white spaces because white spaces tend to consider anything other than white culture to be “unprofessional,” “uneducated,” or even “scary.” Black autistic folx tend to mask more than their white counterparts because their lives literally depend on it. If professionals, especially white professionals, are not explicitly educated on the Black autistic experience, they won’t recognize it.
*Archaic understandings of autism still permeate the system which means that doctors, counselors, and other professions that work with autistics are still being educated with incomplete understandings of autism. This is, at least in part, due to the fact that autistics have not historically been a part of the research on autism. This imbalance results in a discrepancy between what autism looks like to allistics on the outside versus what is actually going on inside an autistic brain. These professionals then go on to work with families and autistic individuals, spreading this misinformation. If a doctor is only given Rain Man or even Sheldon Cooper as an example of autism, they’re not going to recognize autism in Anne Shirley, Phoebe Buffay, or Rose Nylund.
What are some specific traits that get missed by professionals?
*Masking is a trauma response developed early in life to help someone attempt to fit in with society better. Sometimes it is taught (this is what ABA is), sometimes we learn it on our own. Women and people socialized as female are more likely to mask highly, but even men can do this. Psychiatrists who are not acquainted with the concept of masking will miss many autistics in their diagnoses.
*Eye contact, or the lack thereof, is often misunderstood. While many autistics avoid eye contact because they find it literally painful, others have learned to make eye contact through ABA or masking. Yet other autistics can make eye contact but wind up thinking instead about how much eye contact is appropriate and not actually being an active participant in the conversation. And then there are some autistics who may be comfortable with eye contact at times, and incapable of it at other times. For instance, if they do not feel comfortable with a particular person. As with every autistic trait, it varies widely. Most of us experience at least some discomfort, but it may not be obvious to a professional with a more old fashioned understanding of autism.
*Hyperlexia. I am convinced that hyperlexia often masks autism for professionals who believe that autism only ever hinders communication. Hyperlexia is a condition in which the brain is unusually good at letters and reading. Children with hyperlexia may speak very early, letters may become a special interest, and they usually learn to read on their own starting around three years of age. In school, they are recognized by teachers as reading well above their grade level. They sometimes struggle with comprehension at these higher levels, however. But as our cultural, and frankly also our medical, understanding of autism mostly just recognizes autistics who look like Rain Man, when confronted with an autistic who is hyperlexic, they deny the person could be autistic. Despite the fact that hyperlexia is mostly (but not always) found in autistics. *facepalm*
What are the potential risks to seeking a diagnosis?
*People in custody arrangements can potentially lose their children because of a diagnosis and the ignorance of the courts.
*Another risk is a potential misdiagnosis. Many high masking autistics are first misdiagnosed as bipolar or borderline personality (although a person can absolutely be both autistic and have other conditions such as these). Sometimes a misdiagnosis can invite unnecessary and unhelpful medication, or a misdiagnosis can prevent a person from accessing necessary and helpful medication. For instance, a misdiagnosis of bipolar can prevent someone from taking ADHD medication because stimulants are often contraindicated for bipolar.
Some myths about self diagnosis:
"They are taking services away from REAL autistics!"
In actuality, we can't access services without a diagnosis so no, we aren't. Also there really aren't services for adult autistics unless your disability is "severe enough" for your local regional center to accept you.
"They just want attention! They just want drama"
Hardly. In fact, I went through my whole life, struggling to be a person, constantly beating myself up and believing those in authority positions when they said I just wasn't trying hard enough. Understanding I'm autistic changed my whole world. Instead of hating myself for not being able to act like neurotypicals, I can give myself kindness for being amazing at being who I am. Finding my autism was affirming and orienting. Finally I understand all my weird quirks and how to support myself in them. I don't talk about it because I want attention, I talk about it because I'm still in wonder at this new world and because I’d love to help others who have been living without an understanding of their neurodivergence find internal peace,
"They don't know as much as doctors who have studied autism!"
As I said above, maybe maybe not. Many doctors do not in fact have an accurate understanding of autism. But one trait of autism is having special interests. And for SO SO MANY of us, especially those denied a diagnosis as children, autism itself becomes a special interest. We delve into it, sometimes even into the research. Some of us even go on to hold masters or doctorates in autism! What neurotypical doctor is going to spend that kind of time and energy on this?
Ironically, I've heard of people being denied a diagnosis because they "knew too much about autism" and that is just some neurotypical bullshit gatekeeping.
Ok, so you’re still not convinced?
You don’t have to take my word for it! The University of Washington’s Autism Center has this to say on the subject of self-diagnosis:
In our experience at the University of Washington Autism Center, many professionals are not informed about the variety of ways that autism can appear, and often doubt an autistic person’s accurate selfdiagnosis. In contrast, inaccurate self-diagnosis of autism appears to be uncommon. We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic.
In conclusion…
Self diagnosis is valid and it is *important*. Until the professional field catches up to us, we are, in fact, the experts. We are the experts on our own brains and we are the experts on autism. Please do not contribute to the gate keeping. Support self diagnosis.
