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Self Diagnosis in Autism

Autism is a rare field where -- at least within the autism community -- there's a general acceptance of self-diagnosis. I want to address why that is, and what it means for you or those you care about who choose to self diagnose.

I want to start by saying: "Autistic" isn't a label that people give themselves for fun, or for perks. It doesn't help you get a job, no one sends you flowers, and unfortunately it comes with a lot of stigma and misunderstanding. Many autistic adults choose not to disclose their diagnosis to colleagues or family members because of the challenges that would follow, and some autistic adults will even turn down funding awards because having their name associated with the award might "out" them to family or colleagues who are less than accepting. If you know someone with autism who is open about it, this is a good moment to pause and appreciate the courage it takes to tell the world something about yourself that you know can be used as a weapon against you.

But what if you really are autistic? What is the next step when you stumble across the term, and everything in your life suddenly falls into place?

If you're old enough to be self-diagnosing, there's a good chance you're past the age range where psychologists know what to do with you. In the research community, there's a great deal of attention on this problem; researchers explicitly state that understanding autism in adulthood should be a goal for future research, and Meng-Chuan Lai (one of my favorite researchers in the field) describes challenges in adult diagnosis stemming from practical, developmental, and clinical complications. Essentially, clinicians rarely know how to diagnose autistic adults -- and even those that do often don't know how to diagnose women.

Why?

Well, for one thing, in most clinical training, autism diagnosis is defined by childhood behavior, and the patient's word is rarely considered sufficient to speak to their childhood. The trouble is, even if you're lucky enough to have a parent willing to talk to a psychologist for your evaluation, their understanding of your childhood may be flawed. My personal experience in this was what I like to call the Hermione Effect: I was so successful in the areas that parents and teachers expect to evaluate, that areas where I struggled were viewed as individuality or quirkiness. Once most of my symptoms were categorized as personality traits, symptoms that couldn't be conveniently categorized were interpreted independently -- for example, meltdowns were temper tantrums that I'd been too spoiled to outgrow. By adulthood, the symptoms that most clinicians depend on to recognize autism may be too far in the past to be categorized accurately, if anyone is even willing to try.

But why not just rely on symptoms present in adulthood?

Well, autistic adults are often excellent at masking their autism, especially if they've made it to adulthood undiagnosed. At least, that's how it's often described. I think about it a little differently: being autistic is like driving stick shift while most of the world is driving automatic. When you first start, you don't know which gear to be in when, you don't know when to release the clutch, you probably stall frequently. This is why autism is often more obvious in childhood. By adulthood, you may still stall occasionally when sitting in traffic or on a steep hill, but for the most part, people outside the car probably don't notice that you're driving stick. The only way someone would know is if they happen to be there when you stall, trust your description of your experience, or are able to watch as you're shifting gears. And while there are clinicians who are able to recognize autism after the worst of the stalling and gear-grinding are in the past, not every autistic individual has access to such a clinician.

So why not at least try to get a diagnosis?

Well, autism evaluation is expensive.  Pursuing diagnosis can mean spending thousands of dollars (not even counting the cost of psychologist and GP appointments that may be necessary to get a referral). Even if you have that money, what's the point if you know that the diagnostic process is so flawed? And that's before mentioning the multi-year wait list, or the emotional struggle of having your identity scrutinized.

And when the diagnostic process is flawed, the outcome of the evaluation may not feel meaningful. If you're told you're on the spectrum, you may feel validated for a little while, then you may wonder whether you created the answer you wanted to hear with your own bias. If you're told you'e not on the spectrum, you may feel ripped away from an identity at first, until you continue to experience the symptoms that led you to pursue diagnosis to begin with, and realize the injustice of having someone who doesn't understand autism at all be the one to tell you whether or not you're autistic. Late diagnosed women report more difficulty feeling like they belong in either the autism or typically-developing community; they report impaired sense of self, anxiety, depression, and increased experiences with sexual and emotional abuse. It's not unlikely late-diagnosed men have similar experiences. Maybe part of that struggle isn't just that they weren't diagnosed younger; maybe some of it is how hard it was to get the diagnosis when they tried.

Then, perhaps most importantly, there's what happens when autism is misdiagnosed. Sometimes when people pursue autism diagnosis, they're just told that they're neurotypical; more often, another diagnosis is pulled out to explain their symptoms, a diagnosis that doesn't fit. Women with autism are especially likely to leave an evaluation with a diagnosis of bipolar disorder or borderline personality disorder. What a lot of people don't realize is, misdiagnosis isn't just disappointing; it's damaging and potentially dangerous. An autistic adult who leaves with the wrong diagnosis doesn't just miss out on the benefits of a correct diagnosis; they may endure treatments that actively work against their best interests, be put on medications that make it impossible for them to even get out of bed, and have all of their experiences dismissed and invalidated. Autistic adults who are misdiagnosed often undergo a torture of harmful medications, misguided therapy, and other extreme interventions.

And let's not forget the risks to getting the correct diagnosis.

Here's a quick personal anecdote: last month, I was sitting in one of my classes in the PhD program for cognitive neuroscience. We had to give group presentations on topics of interest to us, and one of my classmates chose to present on autism and memory. They stood before a class of graduate psychology students and told everyone that a child with autism could stand there, listen to everyone state their date of birth, and years later still recite with complete accuracy whose birthdate was when. In case you don't know this, that is not true. It's not even close to true -- at least, not for everyone who's autistic, maybe there are some who could do it. I struggle to remember people's names, I certainly don't remember when they were born. Then, this same group went on to describe that an autistic person would not, on the other hand, be able to remember content of a conversation they had with you earlier that day. What?! I drive my fiancĂ© crazy because I quote things he said over a year ago. I can sometimes recite parts of my favorite shows even if they're in a different language, my memory for conversation is exceptional -- and I'm not unusual in that. Not knowing how best to address the situation, I talked to my teacher after class; I explained that there had been inaccuracies in their presentation and I hated for a group of psychology graduate students to leave the class believing that was true. My professor nodded carefully, saying she'd been half expecting me to correct them during the presentation. Then she said, "I was also surprised by their errors. For example, when they said autism can't be cured... isn't that what ABA therapy is for?" ...No. No, that's not how it works. No. (Yes, I did proceed to address the situation appropriately.)

My point is, even people with PhDs in psychology, teaching psychology PhD students, don't understand autism. Psychology graduate students put time and effort into preparing a presentation, and it's filled with falsehoods and stereotypes. If people who are actually making an effort to understand autism are coming back with so much false information, how informed do you think employers are? How about teachers?

When I was lucky enough to find a psychologist who recognized that I had autism, she recommended against pursuing formal diagnosis; she explained that the process could be traumatizing, the waitlists long, and the outcome less than helpful. Then, a family friend explained the deeper reason: I wanted to go to medical school, and I might not get approved for a medical license if I had a diagnosis. And medicine isn't the only field where an autism diagnosis may hurt your career; if you have an autism diagnosis, you may be excluded from security clearances necessary for government work, closing doors to politics and military careers. Depending on how autism presents for you, this exclusion may protect no one, and be nothing more than stigma supported by rulemakers who don't know what autism is. Having your autism officially diagnosed may be the end of your career or goals. If you think that's justified, then you have a limited understanding of what autism can look like.

Finally, I'd be remiss if I didn't mention the ridiculous comments you face if you find yourself speaking to a psychologist who doesn't know what autism looks like. Just a few of the things I heard were, "You can't be autistic, you want friends," "I don't think autism is the right diagnosis for you, you seem to care about your boyfriend," "I'm not sure I understand why your past psychologist said you have autism, you seem so charming..." and, best of all, "I don't think you're autistic, that only really happens in guys. But, you did get raped by your friend, which means you chose to be friends with someone who was a rapist. That probably means you have borderline personality disorder, let's talk about that."

With all these downsides to autism diagnosis, it's not surprising that some people on the spectrum choose to stick with self diagnosis. After all, official diagnosis is stressful, expensive, and can say more about the knowledge of the clinician than it does about you. Yes, self-diagnosis means you miss out on legally-mandated accommodations for persons with disabilities in the work place or in school; depending on where you live, there may be other assistance programs available for people with a diagnosis. And, you're at the mercy of your friends and family to trust your word. That said, depending on where you live and the quality and training of clinicians near you, that could be exactly where you'll land no matter what you do; if that's the case, maybe it's better to avoid the expense and emotional toll.

Disclaimer: It is absolutely valid to choose to pursue official diagnosis. I myself have an evaluation scheduled next month. (Update: I did receive official diagnosis!) I am lucky enough to have access to a resource I trust, to be in a field where it won't harm my career, and to work under people who know autism. I have the opinion of phenomenal autism researchers assuring me that whatever a report says, I am right to call myself autistic. My intention is not to discourage anyone from pursuing diagnosis; rather, I think it's important to be aware of the risks in order to be braced for a less-than-ideal outcome. If it's scary for me, with my support network, I can only imagine the experience of others without. Update: I did receive official diagnosis. 

Comments

  1. Thank you for your blog post on this very important topic. You've provided important information for people to consider. Perhaps, for many adults, it would be helpful to get an evaluation that doesn't include an official diagnosis in order to identify traits to help increase insight. I know I have found ASD testing results and neuropsych evals to be helpful when I've provided psychotherapy or care/case management for people on the spectrum. It's ridiculous that the US military and med schools discriminate against enlisting/enrolling people on the spectrum. I know there are plenty of people serving in our military who are undiagnosed or under the radar who thrive as a result of the structure and predictability and who offer so much talent and expertise with their education, skills and strengths. I'm sure at least two of my specialist physicians, who are brilliant and very successful, are on the spectrum and, at least one, seems to be aware of it because I've seen his communication skills grow over time. I'm sorry it's so scary for so many. That's why I think it's important to not place so much importance on getting a diagnosis. Unfortunately, the discrimination is very real. So, in my own little way, I'll do my part to fight against it by selectively "coming out" re: my ASD ,which is exactly what I've done for years as a lesbian. So far, most of my family and friends have been wonderfully supportive. This new insight helps them make sense of me and my behavior. Most of the time, their reaction has been, oh, so that's why... Sadly, I know not everyone's family and friends are like mine. I have lost some people in my life who've been very important to me as a result and that experience has been emotionally painful. The most loving thing I can do for myself and them is to accept them as they are and let them go.

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    1. Thank you so much for your insight! I was reminded recently, during the first evaluation for my own official diagnosis, of just how much value a good psychologist can bring. I've had some truly horrendous experiences in therapy -- situations where looking back, I wish I'd been sure enough of myself to realize I should have reported the therapist (such as the therapist who told me I should be evaluated for borderline because I'd "allowed myself" to be sexually assaulted and abused). Even with therapists who weren't harmful, I rarely actually gained any insight, and never felt myself making any progress as a result of my appointments. However, I left my first evaluation appointment feeling better than I had in some time. For the first time in all my experience with therapy, someone had actually asked questions I'd never considered, and offered feedback that felt both accurate and impactful.

      If every psychologist were like this one, I would never hesitate to suggest therapy to anyone. It's just so hard to recommend therapy without any warnings or clarifiers, knowing that when it's not good it can be so terribly bad. I don't know how to balance the desire to protect others against those negative experiences with the urge to encourage them to take the chance, given how much the balance between costs and benefits depends on which resources are available to the individual. At the end of the day, regardless of diagnosis or no diagnosis, if someone feels they can keep track of their sense of self if the therapist is bad, then I think it's absolutely worth the risk; but if there's a strong chance of losing oneself if it goes badly, I may recommend workbooks, journaling, meditation, or other self-guided interventions first unless there's good reason to believe the therapist will be reasonably good at what they do.

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  2. Dismay! I am self-diagnosed, medically retired from the military for PTSD secondary to sexual trauma. Autism was not even on my radar when I was on active duty. I discovered the female autism phenotype when I was researching hyperacusis, which I attributed to my PTSD and is one of the more disabling features of my particular presentation. But once I did discover autism, it explained eveything -- childhood, young adult dysfunctional relationships; and my military career, from my choice of occupational specialty, to my exhibited strengths, to my social vulnerabilities that had a lot to do with the sexual trauma. And...

    The psychiatrist at the military hospital tried to get me administratively discharged on a diagnosis of borderline personality disorder. I was extremely fortunate in having advocates, and an astute VA psychologist disability examiner. The PTSD diagnosis enabled me to receive disability benefits that have kept me from being homeless. Servicemembers (mostly women with military sexual trauma histories) who are diagnosed with borderline personality disorder are categorically denied any disability rating for said diagnosis, based on tautological reasoning that if an (adult) patient is diagnosed with borderline personality disorder, then since by definition the disorder was developed by late adolescence, therefore the psychiatric disability existed prior to service, and confers no eligibility for disability benefits; and, should the servicemember decompensate to the point of warranting separation from service, s/he will be subject to administrative discharge rather than medical evaluation board, which may or may not preclude a service characterization of 'Honorable.' An administrative discharge is notated on the discharge document DD 214, which is the last official document a servicemember receives from the military, and will serve for the rest of his or her life as the definitive document of service and characterization thereof. Those scarlet codes follow you for the rest of your life.

    Luckily, after being multiply assaulted and harassed, and retaliated against by my command, I received a diagnosis of PTSD which enabled me to receive benefits as well as appropriate clinical care. BUT! Now I am looking to the future and working towards applying to medical school. I thought, that now, while I'm taking a life pause, I could get a diagnosis, some appropriate therapies, and ready-set-launch into this new chapter with success. A new chapter populated by intelligent, reasonable people. Is the medical education community still so far back in the 19th century? I thought that with a very high documented IQ, a clean service record in a highly selective military community, and an incurable special interest in medicine, that a diagnosis of autism wouldn't hold me back, but rather just enable me to hack my cognition for best results. Do I really have to go back into the closet?

    P.S. If anyone wants to co-write a paper with me on the military's misuse of personality disorder diagnoses to quietly dispose of servicemembers psychiatrically disabled by their service, please let me know how to get ahold of you.

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    1. It's so saddening to hear of experiences like this one. I'm sorry, both for what you've gone through, and for the challenges you've faced in receiving the appropriate support.

      I did not go to medical school, and am in no way an expert on that topic. My understanding from when I was considering it was that while it's technically possible for an autistic to become a doctor, the biases are considerable and it may be unwise to be "out" before a job is secure and reputation established. Most people who are currently making decisions in the medical field were trained before autism became recognized as more than the most stereotypical phenotype; I regularly hear from people who spoke to their primary care doctor requesting a referral for autism diagnosis and were told they couldn't be autistic because they "can talk," are "too smart," "have a job," "have families," etc. In some ways, I've found it easiest to be accepted among less "educated" populations, because those who consider themselves highly educated seem to think that means there can't be anything they don't know or need to revisit. As such, I've found medical professionals especially resistant to the idea that autism might be anything differently from what their textbook told them in 1980. And, unfortunately, those are the people who are training new doctors, weighing in on medical boards, etc.

      I don't know what the right answer is for you. The best advice I have is to talk to a faculty member at the medical school you would attend, and once they have a positive enough opinion of you, ask about whether it would be wise to keep your diagnosis private.

      Before typing my reply, I did a quick search to see whether anyone else had already answered this question. I was disappointed to find many pages of doctors answering the question "Can an autistic become a doctor?" and similar phrasings thereof, explaining all the reasons that we would be incapable; these answers ranged from being incapable of empathizing with patients and their families, to inability to practice a bedside manner, to having an innate inability to cope with even the mildest stress (this person advised that while an autistic might be able to maintain an entirely stress-free job, we apparently can't cope with any stress at all and shouldn't attempt employment that has any real importance). On one hand, this is the internet that I was looking to, and for all I know these people aren't really doctors, or are very much in the minority; on the other hand, I've spoken to enough people who were told similar things by their own doctors, and I've encountered enough under-informed professors who do their one lecture per year on autism based on something they found in an out-of-date textbook, to believe these may be the current beliefs. While your average employer may be willing to admit that they know nothing about autism and give you the opportunity to explain it, medical professionals think they were trained sufficiently and are much more eager to either tell you why you can't possibly be autistic, or to tell you who you are based on their assumptions of what your diagnosis means.

      I wish you all the best, and again send my deepest sympathy (and empathy). The paper you mentioned sounds both fascinating and important, and I would be thrilled if you would share it when it is complete!

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