Can't Catch A Break: The Many Barriers to Diagnosis Facing Autistic Women

An excerpt from my in-progress book on how and why so many autistic women go undiagnosed

The content of this post is an excerpt from my in-progress book exploring why autistic women go undiagnosed so often, the effects of that reality, and what can be done to shift it. Enjoy, and please consider upgrading to become a paid subscriber to support the continued work on this book.

Can't Catch a Break: The Barriers to Diagnosis Facing Autistic Women

“One Does Not Simply” Meme Variation by Melanie Deziel, via ImgFlip.

Can’t Go It Alone

A lack of support can be a major barrier for an autistic adult seeking a diagnosis. A key part of most adult autism assessments is context gathered from an “informant” who can speak to and corroborate the early behavior of the person being assessed. Ideally, this is a parent or caregiver who has known the assessed since childhood, but it can also be a sibling, another relative, a partner, or another longtime companion.

These informants are often asked to complete questionnaires about their loved one’s behavior, participate in live interviews with the assessors, to write a written report based on specific prompts, or some combination of these. Without would-be informants who are keen to participate, getting a diagnosis as an adult may be difficult.

This could be as simple as a would-be informant having expressed skepticism and doubt about a diagnosis when the suspected autistic has brought it up. Or perhaps a would-be informant has made a habit of invalidating the suspected autistic’s feelings. Either of these reactions may make the autistic hesitant to ask their loved one to participate, fearing that they won’t receive support through the assessment process or that the person’s doubt may negatively affect their participation.

But in some cases, would-be informants may overtly refuse to participate. Parents or caregivers may feel defensive as if the assessment of their adult child would reflect poorly on them for having “missed” the autistic behaviors they might report. Informants with more stigmatized or ableist views of autistics may feel shame or embarrassment at the prospect of a loved one receiving a diagnosis or uncomfortable with the implication that the heritable condition may have come from them.

(This is a great time to offer my heartfelt thanks to my mother, who acted as a willing informant for my assessment, wholeheartedly embraced my autistic identity, vehemently supported my decision to be public about my diagnosis, and welcomed every one of the many realizations along the way that ultimately led to a diagnosis of her own. So, I guess, thanks for making me autistic too, Mama.)

For adult autistics, there’s also the increased likelihood that their parents or early caregivers simply aren’t in their lives anymore. A 2021 survey by the US Census Bureau revealed that nearly a quarter of Americans aged 30-39 had at least one deceased parent (23%), and that number rises to 44% for those aged 40-49.

But as with many barriers to diagnosis, non-white autistics are more likely to be at a disadvantage here, with Black Americans losing their parents earlier than their white counterparts. Twenty percent of Black Americans aged 18-29 have already lost at least one parent, compared to just 9.5% of their White peers. Thirty-seven percent of Black Americans aged 30-39 and 55% of those aged 40-49 have lost at least one parent, and for Hispanic Americans the rates are 28% and 50%, respectively.

Even if an adult autistic’s parents are still alive and well, an assessor would be asking them to accurately recall experiences from 30+ years ago. The reliability of memories that are that old might be questionable for most of us, even before we account for the decline in memory and cognitive function that many of these parent-informers may be experiencing if they’re older than 65.

Can’t Go That Far

Another common barrier to obtaining a clinical diagnosis as an adult is access to professionals who can give one in the first place. Since autism is technically considered a “developmental disorder,” most diagnostic experts are trained to diagnose children, not adults. But even for the relatively small number of professionals who are comfortable diagnosing adults, not all are adept at diagnosing women, given that most diagnostic tools and trainings are designed to help identify adolescent or pre-adolescent boys.

Finding a professional who is willing and able to do an autism assessment on an adult is challenging, and that challenge is magnified for those living in more rural areas or in poverty where healthcare cannot be easily accessed locally and transportation to distant healthcare facilities may not be feasible. Specialized experts and services tend to be concentrated in major cities, as is the case with many resources and services.

A 2017 analysis of data from GapMap, an interactive online resource plotting the location of more than 25,000 US autistic resources and services, estimated that the average American lives about 50 miles from the nearest diagnostic center. In 2019, the data showed that 83% of US counties have no diagnostic resources at all. None. Zero. Zilch.

And as bad as that already is, it’s important to note that these depressing figures are for ALL diagnostic centers, not the smaller number of centers that assess autistic adults, or the even smaller subset that are skilled in diagnosing adult autistic women. For an adult woman wondering if she may be autistic, the nearest resource could be hundreds of miles away.

For my assessment, I contacted at least 10 specialists before finding one who was comfortable diagnosing adult women and able to take me on as a new patient. I’m lucky to live within diving distance of the renowned TEACCH Autism Program at the University of North Carolina, but even with a host of qualified experts practically in my backyard, the waitlist for an adult assessment was 10 months long.

That’s typical too, unfortunately. This shortage of qualified professionals means that next available assessment may be months, or even years, away. A 2018 study showed that the median wait time for an adult autism assessment in Canada was seven months. Data from the NHS revealed that in England, 86% of patients over the age 18 with a “suspected autism” referral still have not had an appointment recorded after 13 weeks.

Getting to that appointment, if you can get one, is another story entirely, though…

Can’t Go At All

Countless studies in the US have identified a lack of transportation as a barrier to receiving medical care for about 2% of the population, with women being significantly more likely than men to be affected. Beyond gender, though, many autistic women also exist at the intersection of several of the other situations and characteristics that increase the risk of transportation being a barrier to healthcare.

The unemployed are disproportionately impacted by lack of access to transportation, for example, and autistic adults experience higher rates of unemployment and underemployment than their allistic counterparts. If you’re unemployed or underemployed, chances are you’re financially struggling as well, and lower incomes are also associated with decreased access to transportation.

An international study published in BMJ Open in 2022 showed that 80% of autistic patients reported some sort of difficulty visiting their primary care provider when they needed to, compared to just 37% of non-autistic respondents. But a lack of transportation is just one of the many barriers that keep autistics from getting to their healthcare providers.

The booking process for assessments and referral appointments is a major challenge for autistics, with 59% of autistics reporting significant struggle making healthcare appointments in advance, 62% reporting difficulty scheduling appointments by phone, and 46% reporting difficulty communicating with reception staff. Autistic patients are also twice as likely as allistic patients to miss care appointments, with 40% reporting missing a screening and 47% reporting having missed a follow-up specialist referral that came after a doctor’s appointment.

Can’t Afford It

The prize for all that time spent on an assessment waiting list is often a hefty medical bill that makes for an even more formidable barrier.

Diagnosis in the United States typically costs between $1,000 and $2,000, though it can be much higher depending on several factors, including type of health insurance, what your health insurance covers, your insurance deductibles, whether the facility doing the assessment accepts your insurance, the type of assessment being done, and more. For example, a diagnosis at The Lord Lab, a clinic affiliated with UCLA, can cost between $5,000 and $6,000 for an adult.

While it would be easy to attribute these exorbitant costs to the sad state of the United States healthcare system or the lack of government-subsidized healthcare, hefty out-of-pocket expenses are also common in other countries, too.

A clinic in Oxford England offers an estimate of £1900 to £3500 for assessment and diagnosis, and the UK’s National Autistic Society reports that average costs range from between £1000 to £1500. In Ireland, the aptly named Adult Autism Clinic charges €1100, and a diagnosis at Bzonder in The Netherlands will cost between €2396 and €2827. New Vision Psychology in New South Wales, Australia, discloses on its website that the total cost for assessment and diagnosis (for adults and children) is AU$2800, and Psychology Melbourne estimates costs to be between AU$800 and AU$2000.

In the wake of COVID-19, many clinics began offering virtual assessments with lower price tags than in-person assessments, but even these “cheaper” assessments—often costing between $300 and $1,200‚are cost-prohibitive for many. (To put this into perspective, $1200 is more than an entire month of pre-tax earnings for someone being paid the $7.65 Federal Minimum wage in the US. When an estimated 1/3rd of earnings go toward taxes and other mandated deductions, $1200 amounts to nearly six weeks of earnings. )

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This post (which continues below) is an excerpt from my in-progress book exploring why autistic women go undiagnosed so often, the effects of that reality, and what can be done to shift it. Enjoy, and please consider upgrading to become a paid subscriber to support the continued work on this book.

Why “Off The Record” Is Sometimes Better

There are plenty of autistics who are privileged with access to professionals and the financial means to obtain a diagnosis from a medical provider, but still don’t feel comfortable or are not willing to pursue a clinical diagnosis.

And unfortunately, there are plenty of reasons to be hesitant.

Fear of Employment Consequences

In the United States, autism is classified as a disability, which means the Americans with Disabilities Act (ADA) should prohibit the most egregious and obvious forms of employment discrimination. The challenge, of course, is that the most egregious and obvious forms of employment discrimination are not the only ones that exist. So while the ADA might reduce the likelihood of someone admitting you were “fired for being autistic,” there are many less obvious ways in which a diagnosis could still negatively impact an autistic’s employment.

There’s no way to quantify, for example, whether disclosing that you’re autistic might dissuade a hiring manager from bringing you in for an interview, whether it was disclosed as part of the application process or discovered while researching a candidate via social media. An autistic job seeker’s diagnosis could also tip the scales against them when they’re being considered alongside other equally qualified candidates, whether the hiring managers are conscious of it or not.

But even for autistics who make it through the traditional hiring process or those who receive their diagnosis while already employed, workplace discrimination can still occur in other more subtle ways. An autistic employee requesting or receiving reasonable accommodations might be viewed by colleagues or leadership as demanding, anti-social, lazy, selfish or disruptive. Aside from creating a hostile work environment, these insidious characterizations are also much easier to use against someone when it comes time for raises or layoffs. After all, it’s a lot harder to argue that you were passed over for a promotion because of your diagnosis when the documented reason is that you “are not a team player” or “uninterested in forging close personal bonds with coworkers.”

And, if the organization can assert that the accommodations an autistic employee needs would create “undue hardship” in the form of “significant difficulty or expense,” then the ADA protections and prohibitions no longer apply. (I’m going to go ahead and assume the ADA didn’t consult any autistics on this language, because surely one of us would have pointed out that “undue” and “significant” are vague in a way that benefits the employers, and not the disabled employees that the ADA is designed to protect.)

But even jobs with the very same government that upholds the ADA aren’t safe. According to the Department of Defense’s Medical Standards for Military Service (Section 6.28c), Autistics are also barred from serving in the US Military. Since the disqualifying criteria is based on “current diagnosis” or “verified past medical history,” many autistics who are currently enlisted or planning to enlist choose not to pursue a medical diagnosis in order to keep their career path intact or avoid being discharged from service.

And while this may not be at the top of the list of concerns for folks considering an official diagnosis, it’s worth noting here that section 14(c) of the US’s Fair Labor Standards Act actually allows certain employers to pay disabled employees a sub-minimum wage. In August 2024, The Department of Labor reported that more than 780 employers in the US have this special permission.

Officially documenting a diagnosis may feel especially risky for self-employed autistics or those working in the gig economy. Contract work is more precarious than traditional employment in general since it usually requires winning multiple contracts to scrape together a comparable income. But independent contract work is not protected by the ADA either, meaning hiring managers/ preconceived notions about autistics can have an outsized impact on those many hiring conversations.

Prior to my diagnosis, I was self-employed for nearly 10 years. During that time, I was hired as a keynote speaker and workshop facilitator for more than 200 around the world, some with 10,000+ attendees. I was hired by Fortune 100 companies to run corporate training for their marketing and sales teams and to consult on their content strategy and brand voice. I taught as an adjunct professor for three universities, two of whom also hired me to do curriculum development for Master’s programs in marketing and business.

I recognize the immense privilege of having been able to make a living this way, but I also know that my experience may very well have been different if I had received my diagnosis sooner. Would all of those events have still trusted me to speak in front of their audiences if I had disclosed my diagnosis during vetting? Would all of those companies and universities still have allowed me to educate their employees and students, if they had known that I was autistic before they contracted with me? Would they have paid the same amount? Renewed my contracts? Referred to others? I’d like to think so since I try to work with organizations who have values aligned with mine, but there’s truly no way to know for sure.

And I’ll never really know the extent of the opportunities and income I’ve missed out on now that I’m openly autistic. How many marketing event organizers may ultimately choose not to extend an invite to me after seeing that I also speak about my autistic experience? How many potential clients may decide not to reach out after hearing me identify as autistic in a podcast interview or seeing the word “autistic” in my social media bios?

Ultimately my various privileges allowed me to determine that it was a risk I was willing to take, in hopes that my speaking out would help other autistic women discover their identity, but I know that I’m blessed to have even had the option. The income uncertainty serves as a daily reminder of why many autistics aren’t in a position to make the same choice, forced not to pursue a formal assessment or diagnosis in the name of job security.

Fear of Medical or Legal Discrimination

Employment discrimination is not the only kind that self-identified autistics may be concerned about, though.

Before the passing of the Affordable Care Act (abbreviated to “ACA” and also called “Obamacare”) in 2010, health insurance companies in the US were able to deny coverage to individuals with pre-existing conditions, which includes those diagnosed as autistic. As long as the ACA remains intact, autistic individuals cannot legally be denied coverage by insurance companies, but Republican political leaders and members of Congress have continuously threatened to repeal the ACA over the last 15 years, which means getting health insurance coverage may still be a challenge in the future for those with a documented pre-existing condition, including autistics.

Several countries, including Australia, New Zealand, Singapore and Canada have immigration policies that make it more difficult or impossible for autistics to gain work permits, visas, residence, or citizenship; some autistics have even faced deportation as a result of their potential support needs being perceived as a burden on government-funded healthcare systems. For autistics living in these countries—or those whose family or work commitments bring them to these countries—getting a formal diagnosis may not be possible without fallout.

There are also valid concerns over discrimination by the judicial system since an Australian study from 2022 found that “the autistic population are perceived unfavorably in adjudicative proceedings, resulting in harsher penalties.” When viewed with the knowledge that an individual is autistic, otherwise minor infractions could be positioned as evidence of broader incompetence by prejudiced lawyers and judges, transforming a simple speeding ticket into grounds for revoking a driver’s license. Similarly, parents and other caregivers may fear a diagnosis being weaponized in an attempt to deny them custody of or access to their loved ones.

These outcomes are magnified when an autistic also holds other marginalized identities—Black, POC, LGBTQIA+, those living in poverty—that already tend to receive harsher sentencing and unfavorable treatment by the judicial system.

Privacy, Safety, and Well-being

Note for Substack readers: The following section (addressing the threats to privacy, safety, and well-being that may come with a clinical diagnosis) was written before the US Presidential inauguration in January 2025. Unfortunately, there’s probably an entirely new and even more depressing subsection that will need to be added to address the additional risks being introduced or amplified by the new regime. Until I have the emotional bandwidth to dive into all that, here’s the section as it was written prior to January 2025.

For some autistics, the hesitance is fueled not just by fear of discrimination, but by a fear for their life and wellbeing, as well. As discussed in Chapter 2, autism was first studied and documented in Nazi Germany as part of its racist, ableist, and homophobic eugenics program enacted during World War II. So you can’t blame autistics for being weary to formally document a condition that once resulted in euthanasia, and might again.

It’s not as far-fetched as it may initially sound. Researchers continue to search aggressively for a conclusive genetic marker of the condition, which would almost certainly lead to prenatal testing for said marker, bringing us back to the research’s eugenic roots and allowing autistics to once again be deemed “unworthy of life.”

And as women’s reproductive rights have increasingly come under threat in the United States in recent years, some also fear that their right to start a family could also be at stake if their disability is documented and disclosed to bad actors. After all, such bad actors could avoid the rigamarole of testing in utero if they can systematically test anyone of child-bearing age and use forced sterilization to prevent the possibility altogether, right? Ugh.

This isn’t baseless fear-mongering or science fiction: More than 70,000 Americans were sterilized against their will between 1900 and 2000 after the 1927 US Supreme Court ruling in Buck v. Bell (274 US 200) allowed for the forced sterilization of “defective persons… in order to prevent our being swamped with incompetence. It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.” (The scowl I made while relaying the text of that ruling was so fierce that I may never be rid of the forehead wrinkles that it etched upon my face.)

Between 1929 and 1973, the state of North Carolina forcibly sterilized more than 8,000 “defective persons,” more than 84% of whom were women. Then in 1960, the state largely stopped performing forced sterilizations on men, which meant 99% of the forced sterilizations performed from 1960 to 1973 were perpetrated against women. By the late 1960s, young black women were the victims of 61% of forced sterilizations in North Carolina.

Just in case you’re tempted to assume that some radical demographic change in the population of North Carolina could explain this overt shift toward a near-exclusive focus on sterilizing women (and especially women of color), it can’t. Like many other states across the country, North Carolina was simply executing a eugenics program intentionally crafted to disproportionately harm women, people of color, the poor, and the disabled.

Incarcerated women have also been targeted: A report from the Center for Investigative Reporting confirmed that at least 148 female inmates in California prisons were sterilized without their consent between 2006 and 2010, in addition to another 100 potential instances of forced sterilization dating back to 1997.

As is often the case with policies like these, it’s the most marginalized communities—women, POC, the incarcerated—that are most susceptible to harm from reproductive injustice, as carrying multiple intersectional identities creates complex webs of discrimination and disadvantage that collect and compound. Autistic women are already a vulnerable group, and harm is magnified further for autistic women who are also non-white, immigrants, gender nonconforming, LGBTQIA2S+, deaf, blind, non-verbal, visibly disabled, chronically ill, single parents, incarcerated, elderly, living below the poverty line…. and any possible combination thereof.

This grotesque chapter of history hasn’t ended, either. As of August 2024, Buck v. Bell has not been overturned, and 31 of the 50 US states (and Washington D.C.) still have laws that allow the forced sterilization of disabled people.

Why Bother With A “Diagnosis” At All?

A good number of women who suspect they may be autistic ultimately calculate that these and any other barriers to clinical diagnosis just aren’t worth the potential payoff. And who can blame them?

After you’re done with schooling, there’s no need to provide documentation of a diagnosis for school accommodations. And a formal diagnosis may not even be necessary to request accommodations at work, assuming there are accommodations available and they’re comfortable asking for them. If the only changes likely to be made are those that can be self-imposed or self-administered, it’s a lot less tempting to jump through so many hoops for a piece of paper that comes with a whole lot of risks.

For some, simply realizing that they are likely autistic is enough to move forward, allowing them to focus on accommodating their needs and accepting their new identity.

This post is an excerpt from Melanie Deziel’s in-progress book exploring why autistic women go undiagnosed so often, the effects of that reality, and what can be done to shift it. Enjoy, and please consider upgrading to become a paid subscriber to support the continued work on this book.

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