Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That.
Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That.
Know the costs — and the legal risks.
This piece was originally published to Medium on August 4, 2022.
I literally wrote the book on the large and diverse population of Autistic adults who, for a variety of reasons usually related to marginalization, make it well into adulthood before discovering they have a disability. I call this group of Black, brown, trans, gay, female, elderly, and impoverished Autistics “masked Autistics,” or “maskers,” because we often cope with having an undiagnosed disability by learning to fake neuro-conforming behaviors. Masked Autistics may become so accustomed to hiding our true feelings and compensating for our limitations that we don’t feel in touch with our actually Autistic selves much at all.
A lot of masked Autistics have imposter syndrome about their disability — they think that because they’ve managed to cope thus far with persistent sensory agitation, social confusion, ostracism, and difficulty following vague instructions, that they must not be “disabled enough” to warrant help or a place in the disabled community. Masked Autistics turn their own flawed coping mechanisms against themselves, believing that since they can force themselves to smile ‘normally’ (even if it’s painful), they should continue to grit their teeth and do so. Or that since it’s possible for them to white-knuckle their way through a forty-hour work week (even if it comes at the expense of eating, socializing, or having any hobbies), they don’t truly deserve accommodations or extra help.
To get over that powerful imposter syndrome and validate that their struggles are genuine, many masked Autistics seek a formal psychiatric diagnosis. But finding a formal diagnosis as an adult — especially one who masks — is very hard. Nearly every day I open up my inbox and Twitter DM requests to find several detailed, frustrated messages from people who suspect they might be Autistic, but aren’t quite sure yet, and are begging for my help in locating an assessor who might diagnose them.
In most cases, I encourage adults who are seeking a formal Autism diagnosis to rethink that desire. There are very few guaranteed benefits that come along with an Autism diagnosis, and the costs and the risks attendant to seeking one are quite substantial, and only getting worse. There are some situations where receiving a diagnosis can really help a person, but those circumstances are rarer and more specific than many people realize. I think it’s important that anyone embarking on this process do so in a clear-eyed fashion, cognizant of what positives they can reasonably expect, and which negatives might also be coming their way.
In this piece, I’ll get into exactly what an adult Autism diagnosis could potentially cost you — in terms of your finances, as well as social and legal ramifications. I’ll also explain why some of the potential benefits of a diagnosis that many maskers seek are unlikely to manifest, and how to go about deciding whether you truly need one. Let’s dive in:
Autism Assessments Are Expensive
The cheapest I’ve ever heard of an Autism assessment being is a still pretty hefty $500;typically, an adult assessment will run you more like $1500 to $5000 (though I have seen as high as$10,000),depending on if you are utilizing a private or sliding-scale clinic. This is true not only in the United States, but even in countries like the UK with nationalized health insurance. Very few insurance plans cover Autism assessments for adults at all, so most diagnosis-seekers will have to pay out of pocket.
Because Autistics (including undiagnosed ones) tend to be underemployed and underpaid compared to our allistic peers, very few of us have an extra few thousand dollars kicking around that we can throw toward an assessment — especially given that if you are a woman, trans person, person of color, or other marginalized Autistic, it’s far less likely you’ll be accurately assessed.
Most Autism Assessors Are Not Qualified to Work With Adults, Particularly Marginalized Ones
To this day, many Autism assessors won’t even see adults at all. Even those who do frequently rely on evaluation instruments that were developed for children. In my book, I describe how my friend Seb was forced to sit down and narrate stories from a children’s picture book as part of their Autism assessment. This is a standard part of the Autism Diagnostic Observation Schedule (the ADOS), and it’s rooted in a decades-old and now widely discredited belief that Autistic people lack imagination and the capacity to tell stories.
Despite it’s irrelevance and age inappropriateness, measures from the ADOS (including the picture book exercise) remain widespread. In fact, most Autism assessments used today are still the ones developed decades ago for evaluating Autism in white, middle class male children. And the outlooks of psychiatrists dispensing these exercises have not changed much either. I hear from women who have been turned away from an Autism evaluation because “women aren’t Autistic” on a shockingly frequent basis. It’s not unusual for potentially Autistic people to be rejected from diagnosis for things like being “too polite,” wearing makeup, or having any friends.
I know that many masked Autistic people seek a diagnosis because they assume a trained professional will be able to give them an objective answer about who they are. But the data is clear: Autism assessments are not objective, and are influenced more strongly by racism, sexism, transphobia, and ableist ideas of what Autism must “look like” to an external observer than they are by how a person actually experiences disability out in the world.
Autism Diagnosis Does Not Unlock Access to Beneficial Mental Health “Treatment”
With some disabilities, diagnosis grants a person accesses to needed medications or a specific therapeutic treatment. With Autism though, this isn’t the case. There is no therapeutic “treatment” for Autism, no way for Autistic traits to be reduced or “cured,” and most in our community consider the idea of curing Autism to be deeply dangerous anyway.
Autism is a benign, regularly occurring form of human difference that makes up a core part of a person’s identity. It’s not a defect. It’s not a disordered behavior a person can be trained out of. There is no removing “Autism” from a person. The only supposed therapeutic ‘treatment’ for Autism that does exist, Applied Behavioral Analysis Therapy (or ABA), was designed to train Autistic children to fake neuro-conforming behaviors. It does not reduce the Autistic child’s distress or loneliness. In fact, studies suggest undergoing ABA is mental and emotional torture.
When Autistic people mask who we really are, it causes us extreme anguish. What we really need, then, is the acceptance and support necessary to live more freely as ourselves (which has been demonstrated to carry many psychological benefits). Most therapists are unfortunately pretty ill-equipped to guide Autistic patients along the journey of self-acceptance and community building that’s necessary for our wellbeing.
Many conventional therapeutic techniques used to treat depression and anxiety in neurotypicals, such as Cognitive Behavioral Therapy, have been proven to be less effective for Autistics . Eating disorder and addiction treatment methods also need to be altered to serve Autistic patients effectively. If you are lucky enough to be able to find an Autism-competent therapist in your area, they may be able to modify their approaches to help you treat any psychological or emotional problems you’re facing. And if you’re a masked Autistic and you want therapeutic help with unmasking, I’d direct you toward Heather Morgan’s Values-Based Integration process. But you don’t need a formal diagnosis to access any of these resources or accommodations.
An Autism Diagnosis Can Impede Your Gender Transition
In her inflammatory blog post “TERF Wars” published in the summer of 2020, author J.K. Rowling hand-wrings over the fact that many transmasculine people happen to also be Autistic. The high degree of overlap between Autism and transness is a pretty common talking point among “gender critical” transphobes, who wish to see gender-affirming healthcare banned among minors, and heavily restricted and gatekept among adults.
I follow the detransitioned TERF movement quite closely and have done so for years — and so I’ve frequently seen their leadership claim that transness has become a “fad” because vulnerable, impressionable Autistic girls have all been deceived by the internet “trans cult” into thinking they must change their bodies. Sadly, these once-niche hate movements have gained serious political ground: restrictions on gender-affirming healthcare are passing all across the United States, as are laws that make it illegal for a parent to merely respect their gender of their trans child. Throughout much of the world, qualifying for hormone replacement therapy requires that you undergo an Autism assessment first — and you may be judged as too incompetent to transition, if you are diagnosed.
The only way to ensure you avoid this fate is by seeking your hormone replacement therapy from an informed consent clinic— or by never seeking a formal diagnosis of Autism.
Diagnosed Autistics Are Not Allowed to Immigrate to Many Countries
Kaiser Health News reports that a growing number of undocumented families in the U.S. avoid seeking help for their Autistic or otherwise disabled children, because they fear having a disability attached to their green card or citizenship applications might get them rejected. This fear is sadly quite rational and astute. In many countries, it is impossible to immigrate and become a citizen if you are Autistic — or if you have an Autistic child.
Canada considered Autism to be a “burden” on the state’s healthcare system, and hence refused to allow any Autistic people to immigrate to their country until 2018. New Zealand still denies entry to Autistic immigrants. Australia denies Autistic kids visas. An Autistic Ukranian refugee was recently turned away from the United Kingdom because of his disability. In fact, numerous countries operate under some version of a “public charge” rule, which holds that disabled immigrants will cost their new country’s healthcare systems too much to be worth permitting into the country. Autistic lives truly are viewed as less worthy than allistic ones — so if you’re seeking out a formal diagnosis, you need to be aware of how it might limit your mobility, and your legal autonomy, in the future.
Diagnosed Autistics Can Lose Their Legal Autonomy
One Autistic man that I spoke to while researching this piece told me that when he was rejected from military service because of his Autism, it fundamentally altered the course of his life. He’d hoped military service would help him and his family claw their way out of poverty, so he was crestfallen and felt highly stigmatized when he discovered it wasn’t an option. Autistic people are automatically disqualified from military service in the U.S. and many other countries, so he’s far from alone in experiencing blows like these.
I’m no fan of the military industrial complex, and in fact I could see the advantages to a person leveraging the military’s Autism ban as a means of avoiding the draft. Even still, this categorical ban is representative of the fact that Autistic people are seen as less capable and trustworthy by the state. And this viewpoint is deeply embedded into every corner of the legal system. Autistic people can be forcibly put under guardianships and conservatorships (like Britney Spears famously was), losing control over their finances, housing, and no longer being permitted to get married, consent to surgery, take out loans, or sign contracts.
This lack of legal personhood and freedom is a large part of why Autistics are vulnerable to abuse and exploitation at elevated rates. Diagnosed Autistics can also be institutionalized if someone close to us claims that we are in danger, or if a doctor believes we are not “complying” with medical instructions. For example, if an Autistic adult decides they don’t wish to take an antidepressant that’s been prescribed to them because they hate the side effects, they may be treated as medically noncompliant and a risk to themselves — and be forced to take meds or be institutionalized as a result.
Diagnosed Autistics Can Lose Their Parental & Reproductive Rights
Disabled parents frequently lose custody of their kids, or are judged by courts as incapable of raising children in an adequate way. The National Council on Disability has a 445 page report on the many ways in which disability discrimination impacts the lives of parents, from forced sterilization to denial of child custody to denial of requests to move to their families to more accessible cities.
In two-thirds of American states, parents with disabilities can have their children forcibly removed from their homes. In divorce proceedings, courts overwhelmingly favor non-disabled parents over their Autistic exes. If you’re formally diagnosed as Autistic, adoption agencies may deny your application (particularly if they are privately run) and you may be unable to donate eggs or sperm. And even though nearly all these parental & reproductive rights restrictions are tied to the belief that Autistic people have inferior genes and would make terrible parents, if an Autistic person actively seeks a tubal ligation or hysterectomy, they may be turned away from that as well.
Diagnosed Autistics Can Be Denied Organ Transplants and Put on Do Not Resuscitate Orders
Since 2011, an Autistic man named Paul Corby has repeatedly been denied a position on the heart transplant waitlist because of his disability. Corby was first denied a transplant when he was just twenty-three years old; in 2019 he and his family were still fighting to save his life, as a rare genetic condition continued to eat away at the left ventricle of his heart. Yet doctors continually turned Corby away because he carried a plush Princess Peach doll with him for comfort, couldn’t effortlessly list all 19 medications he was on — and because preserving a disabled person’s life is still considered a less worthy cause than saving someone non-disabled.
Both disabled children and adults can be denied organ transplants throughout much of the world. This discrimination (which comes with a measurable body count) is considered logical and fair by most countries’ medical systems, because it’s presumed society benefits less from sparing the life of someone who, even with a transplant, will remain otherwise disabled. Whenever healthcare access is severely limited, Autistic & otherwise disabled people are swiftly placed on the chopping block: in 2020, for instance, 27 different states rationed Autistic patients’ access to ventilators. Throughout the pandemic ‘do not resuscitate’ orders have been placed on Autistic people’s medical charts without either their knowledge or their consent.
Though many masked Autistics seek out a diagnosis in order to unlock access to disability benefits and healthcare, it can often wind up backfiring completely. When you have a formal diagnosis of a disability like Autism on your medical record, you run the very real risk of being seen as less human — and less worthy of basic care and life — than non-Autistic people are.
Diagnosed Autistics Are Treated As Less Competent By Doctors, School Officials, & Employers
Clinical psychologist Ole Ivar Lovaas (the founder of ABA therapy) once famously said that Autistic people resemble human beings, but are not actually human inside. To this day, many professionals carry within them the same belief that Autistic people are untrustworthy, anti-social, and both mentally and emotionally incompetent. Unfortunately, this means that being formally identified as Autistic can severely wreck your life professionally, academically, and medically.
Not only is discrimination against Autistic people baked into our medical system — it’s deeply embedded in how doctors view their Autistic patients as well. One Autistic adult that I interviewed, Delilah, tells me that the moment a doctor finds out about her diagnosis, they begin speaking to her in a condescending baby voice. Research shows that doctors grant Autistic patients less autonomy over their own health, and don’t trust them to understand their medical options or advice.
Data also shows that teachers believe their Autistic students do not have feelings, see including them in education as more trouble than its worth, and have a more negative attitude toward them than nearly any other population of disabled students. This also tracks with what my own interviews of Autistic adults have revealed: one young woman that I spoke to, Renee, told me that when she applied for disability accommodations at her university, she actually began being treated worse than she was before she requested help. She believes this has everything to do with educators’ stereotypes of Autistics as cold, uncooperative, and disinterested in social connection.
“When professors know I’m Autistic they look for more things that seem off with how I act and interpret everything in a more negative light,” she says. Being slow to respond to a question, for instance, used to be interpreted as her being shy. Now it’s seen as a sign of aloof Autistic arrogance.
Though some masked Autistics pursue diagnosis because they want to be legally protected against discrimination, the data suggests this doesn’t always pan out the way people hope. Some diagnosed Autistic people do unlock helpful workplace accommodations to which they are legally entitled when they come out at work, but others face repeated social othering and frequent questioning of their judgement.
An Autism Diagnosis Won’t Protect You From Discrimination (Unless You Have a Ton of Money)
One reason that adults may seek an Autism diagnosis is in hopes that doing so will protect them against discrimination. Under the Americans with Disabilities Act (or the many equivalent laws that exist in other countries), disabled people supposedly cannot be discriminated against in housing, employment, or access to public spaces. In actual practice, however, the ADA is violated thousands of times every single day of the year, with absolutely zero legal recourse. And the reason for that comes down to the ways in which the ADA is enforced — or rather, is not enforced.
Only a small handful of the many laws that exist in America are actively enforced by our government’s executive branch. If you get caught stealing change out of the cash register at your work, for instance, your boss can call the police and have you arrested for theft. But if your boss refuses to grant you a promotion because you are Autistic, you can’t call the cops on him for violating the Americans with Disabilities Act. A landlord can have the cops throw you out of your apartment if you fail to pay your rent, but if you get denied a lease because you use a wheelchair, the police will do nothing to help you.
The only way of enforcing your own ADA rights is to sue an employer, landlord, or business owner for having discriminated against you — and doing that requires extensive evidence, and a boatload of money and time. If you do happen to possess the resources necessary to sue for disability-based discrimination, the odds are that you will lose. Disabled people only win ADA lawsuits against their employers about 8% of the time.
Despite the existence of anti-discrimination statutes for disabled people, it’s unfortunately still very easy for bosses, businesses, and housing management companies to exclude disabled people in subtle ways. You probably won’t ever be fired explicitly for being Autistic — instead you’ll be told you’re not a good fit for the company’s culture, or that you are bad at working with people. A restaurant is unlikely to refuse you service because you’ve told them you have a disability (and if they do, they won’t admit it). Instead, you’ll be given the worst table in the room and be frostily ignored.
A diagnosis won’t prevent these systemic issues from happening. Unless you and several other disabled people can document a pervasive pattern of mistreatment and prove it in a court system that is already inclined to disbelieve you, you probably won’t enjoy any recompense.
An Autism Diagnosis Won’t Make Your Family Respect You
Many, many masked Autistic people tell me they want a formal diagnosis because they hope it will force a disrespectful parent or spouse to finally take their needs seriously. This is very unlikely to happen. An ableist person who does not respect you will not suddenly begin respecting you the moment a psychiatrist says you have a ‘disorder.’ If anything, a person who once doubted the existence of your disability will simply turn around and use your diagnosis to discredit your judgement once you have it.
In Unmasking Autism, I profiled one Autistic woman named Crystal, whose mother had deliberately denied Crystal a chance at diagnosis when she was a child. Crystal’s mom didn’t want her daughter to be stuck with a label that she viewed as shameful and stigmatizing — and she couldn’t comprehend it when Crystal finally decided to pursue diagnosis as an adult. She still doesn’t honor Crystal’s needs for extra rest and super-clear communication, telling her to “get over” her sensitivities and simply “try harder.”
One Autistic person told me that she got diagnosed specifically to shut down her judgmental, small-minded family members. She drove across the country with her diagnosis paperwork in hand, eager to sit her relatives down and make them finally understand her accessibility needs. All they did challenge her. Now when she has any kind of emotional reaction or difference of opinion, her family blames it on her disability. She told me she deeply regrets having gotten diagnosed — and having come out to people who never showed any sign of respecting her.
In the vast majority of cases, revealing a formal Autism diagnosis will not magically make your friends better listeners, your partner more willing to help around the house, or your parents less emotionally invalidating. If somebody truly trusts you and cares about you, they probably already listen to you about how you feel and what you need. But if a person has repeatedly shown in their behavior that they don’t take your concerns seriously, a slip of paper from a psychiatrist is very unlikely to change that.
Here’s Some Solid Reasons Why You Might Want To Pursue A Diagnosis
Now that I’ve gone through a pretty extensive list of reasons not to seek an Autism diagnosis, I’d like to acknowledge some of the specific situations where you really might want to go after one:
· You’re enrolled in a public school or university and need extra test-taking time, a note-taker, or some other well-known disability accommodation that is pretty commonly provided.
· You’d like a medical marijuana card, and are in a state where you’d qualify for one.
· You have the financial means to sue an employer, landlord, or business for discrimination and believe you have the evidence and energy to pursue a credible case.
· You need to access government benefits such as Social Security Disability Insurance (SSDI).
· You need to take a disability leave at your work or school.
· You have specific accommodations that you need at work or school, and you trust your institution to actually provide them.
You’ll notice that each of these scenarios comes wrapped in caveats, and assumes a degree of privilege and good fortune that many disabled people do not have. You know your own situation best, and if you think any of these benefits are worth the potential risks (or that the risks do not apply to your life), go for it!
You Don’t Need a Diagnosis To Join The #ActuallyAutistic Community
A diagnosis is not what makes a person Autistic. Autistics existed long before psychiatry decided there was something ‘wrong’ with us, and we will remain long after it ceases to do so. You get to decide for yourself if the label “Autistic” is useful to you, if it helps you understand yourself better, communicate who you are to others, and advocate for your specific boundaries and needs. Nearly all Autistic community spaces vocally support self-diagnosis, and consider inquiring into a person’s diagnosis status to be pointless and impolite.
Self Diagnosis Isn’t ‘Valid.’ It’s Liberatory.
If Autism is a neutral source of human diversity, why the hell would we need to diagnose it?
There is no clear-cut, objective answer to the question “Am I Autistic?” because every human’s internal experience is wonderfully subjective and ever-changing. If you feel at home amongst Autistics, appreciate the stim toys, broad social acceptance, and accommodation tools we have to offer, and acknowledge that you stand to gain from our liberation, then you have a place in our community — no matter how you identify, or who first identified you. We are stronger together. We can more effectively fight for disability justice when our ranks are larger and more diverse. There is no reason for us to gatekeep and limit a person’s ability to join forces with us.
So while you may determine that you need a formal Autism diagnosis for some other reason, don’t pursue one just to prove to yourself or others that you really are Autistic. You are the only person who can ever truly determine that. You have the power to define who you are, and determine what kind of life you wish to lead — don’t give that power away to anyone else.
