Should I get diagnosed with autism as an adult?
July 26, 2022 4:12 PM   Subscribe

I'm a self-diagnosed autistic who is wondering about the pros and cons of getting a formal autism diagnosis as an adult. Difficulty level: AFAB queer trans person of color Concerned: anticipating abusive bureaucracy/world chaos

Hello! So my formal ADHD diagnosis has changed my life, and it's been a huge battle to get it. Now, I have 9 months left before my extremely nice UC SHIP/Anthem Blue Cross insurance runs out to, and I need help deciding quickly whether pursuing a formal autism diagnosis is worth the trouble, and whether it'll have any lasting political implications if I have a formal diagnosis.

Pros I've heard:
Formal accomodations by a workplace (if the workplace isn't ableist and doesn't want to fire me for being neurodivergent in the first place
More research is coming out for AFABs being underdiagnosed

I'm a queer trans person of color and the world looks(is?) like it's rapidly destabilizing. I already don't have a nonbinary gender marker on my government ID because I am unclear on how being nonbinary makes me safer within the eyes of the state and police, so I have similar questions about how an autism diagnosis makes it more difficult. I've heard that disabled people get banned from traveling and immigrating to other places, like Australia and New Zealand.

While I don't think I am leaving my home state of California anytime soon, unfortunately I've been traumatized enough by abusive bureaucracy for multiple of my marginalized identities to be really skeptical that an autism diagnosis has benefits.

My ADHD diagnosis has conferred significant benefits in grad school, to the point of protecting me from several abusive professors from potentially violating ADA, but it's unclear to me how an additional autism diagnosis will protect me in the workplace/immigration in the future. I have a disability justice politic and I already feel very self-affirmed in my self-diagnosis of being autistic, so I wonder about the benefits.

Ideally, I am looking specifically for experiences and anecdotes, and suggestions to help me think through clearly. What I don't need is people to assume that I have access to health insurance after March 2023 -- my employment situation is extremely fuzzy right now and it is better that I stay concentrated on the health insurance I do have until March 2022. I do have access to outside referrals, as long as it is covered by UC SHIP/Anthem Blue Cross.
posted by yueliang to Health & Fitness (16 answers total) 7 users marked this as a favorite
Best answer: I'm going to me-mail you.
posted by hoyland at 5:21 PM on July 26, 2022

Best answer: I think this might come down to whether your ADHD diagnosis can get you the accommodations that you need already. I don't know about this for an adult diagnosis, but I can say that a diagnosis of anxiety and ADHD together got one kid the same accommodations that ASD would get them on a school 504 plan. The other kid's sensory processing disorder + ADHD + anxiety 504 was unchanged when ASD was added to it. For that kid, sensory processing accommodations were relevant to accommodations that their ASD would have gotten, so YMMV. (For example, I could think of adult ADHD accommodations around attention/focus/environmental stimuli/scheduling that might be very relevant to ASD accommodations, but I think that it would really vary by individual employee and employer as to whether it was sufficient.)
posted by instamatic at 5:51 PM on July 26, 2022

Best answer: I am out as ADHD at work, debating whether to pursue foal ASD diagnosis for extra protection. I'm curious to see what answers you get.

To me, the ASD creates specific social issues that I cannot easily frame as due to the ADHD. Like I can follow whatever social codes there are as long as they are made very explicit. I don't think that's ADHD. And I worry that I may run into issues specific to missing a subtext/implicit expectation. That's my main reason for looking into it.
posted by crunchy potato at 6:11 PM on July 26, 2022 [1 favorite]

Best answer: I'm a cis woman and I got a formal autism diagnosis last year at age 36 because I wanted one. It was a really lovely experience, but I chalk that up largely to having an autistic psychologist do my testing. If you want a formal diagnosis and can find either an autistic or at least explicitly neurodiversity-affirming psychologist who takes your insurance, I don't think there's much downside. You don't have to disclose the diagnosis to anyone unless you want to.

Also, and take this with a grain of salt because I'm not a lawyer or immigration expert, but: I don't know how simply getting a diagnosis would cause you to be identifiable as an autistic/disabled person in an immigration context. I guess if your psychologist was part of the hospital/clinic system where you receive primary care and other medical services, it would end up in your medical records, but if you go through a separate practice and don't share your report with your primary care provider, it wouldn't be in your record.

However, if you're comfortable with your self-diagnosis (which, to be clear, I 100% believe is valid) and you're open about your ADHD at work, I don't know that there's a great reason to risk a disempowering, or even traumatic experience with the average (most likely allistic) psychologist who offers diagnostic testing and is in your insurance network. Online forums are full of women and AFAB individuals sharing painful experiences of being dismissed by psychologists because they, e.g., wear makeup or have a job or are in a relationship and therefore don't fit the psychologist's outdated understanding of autism.
posted by theotherdurassister at 7:25 PM on July 26, 2022 [5 favorites]

I think it makes some money come easier. (I am Autistic and have been diagnosed at 14, so this is not direct experience, but some anecdata, and it ddepends on where you are)

There is something radical as w ell in forcing the state to agree with you, but it comes w a burden
posted by PinkMoose at 7:38 PM on July 26, 2022 [1 favorite]

Best answer: I definitely know people who respect self-diagnosis in general and still got a sense of personal closure out of getting a formal dx for themself.

You might not want that — but it would be legitimate if you did, and it wouldn't make your political convictions any less legitimate either. You can fight for disability justice, affirm self-diagnosis as valid, see disability as a system of oppression rather than a personal weakness, and still be curious what an expert would say about your condition. Nothing wrong with pursuing that curiosity as long as you continue to value those who don't pursue it.
posted by flexible-footwear figurine at 10:08 PM on July 26, 2022 [2 favorites]

Best answer: This is somewhat tangential, but I'll speak to the part of your question about immigration. Autistic people aren't banned from coming to New Zealand, but if they wanted to immigrate they might be declined if they were likely to impose significant costs on the health system, or do not have an "acceptable standard" of health. Autism is specifically mentioned as one of the conditions that may indicate that an applicant does not have an acceptable standard of health. However, this is only the case if the applicant requires "significant support" as a result of their autism.

There have been cases of children who were refused visas under these criteria: 2022; 2021.

Visa applicants also have to get a medical certificate from a specified doctor, which includes a question about autism. I don't know the US system, so I don't know whether theotherdurassister 's suggestion would work.
posted by Pink Frost at 10:10 PM on July 26, 2022 [1 favorite]

Best answer: (FWIW, as a US resident who's dealt with health care a lot, I'm confident that theotherdurassister's suggestion will work here. There really isn't any such thing as Your Permanent Medical Record in the US. Records can be transferred from one doctor to another, but it's not automatic and it requires the patient's explicit permission unless, as she says, both doctors are part of the same practice or the same hospital system.

This makes it very easy not to transfer records. In fact, a new doctor won't even necessarily know that the old records exist, since which doctors you've seen in the past isn't public information.

I suppose you'd also need to be comfortable telling a lie of omission on immigration paperwork. And I suppose that you could be caught, though it would be difficult. Immigration authorities there could subpoena your medical records here — though they'd need to know which doctors you'd seen here to do it, and as I said, that's not public information. I suspect that's unlikely, but I don't know that for sure and it probably varies from country to country. You'd probably want someone from New Zealand — or wherever — to confirm how seriously this sort of thing is taken there and how much overseas detective work goes into investigating it.)
posted by flexible-footwear figurine at 10:19 PM on July 26, 2022

I'd hesitate to do so as a way to "prove something" to the medical establishment--you have a dx from people you don't trust, they have your time and cash.

If you feel like formal diagnosis will help you access treatment and support and better navigate the world, then yes, it is a good idea.
posted by kingdead at 5:39 AM on July 27, 2022

Best answer: My own experience: I have a high-functioning autistic child who benefited from a wonderful therapist. From that experience, which included sharing sessions with my child, I recognized that I might be autistic as well. I asked my therapist what it'd take to officially diagnose it, and she described a complicated and expensive process of interviewing family members and friends who have known me a long time. It took me a while (hello, slowness in recognizing social cues!) but I came to understand she was telling me not to bother.

That said, I have no need for a formal diagnosis; the self understanding was, and has been, sufficient.
posted by Gelatin at 6:42 AM on July 27, 2022 [1 favorite]

Sorry, I keep thinking of more things. As an autistic adult, it can be extremely useful to have a therapist who understands autism and can help you process the ways it has affected you. A lot of disabled people, as I'm sure you know, have trauma from the ways we've been mistreated as a result of our disabilities, and a good therapist can really help with that.

Some therapists like that are comfortable with self-diagnosis. Others will want you to get a formal one, especially if they have a stereotype of what autism looks like that doesn't include you. Depending on how much you end up benefitting from the therapy, getting the dx to access it can be worthwhile, even if you don't otherwise need accommodations and you accept that nobody is going to "cure" you.
posted by flexible-footwear figurine at 6:48 AM on July 27, 2022

Response by poster: I've been in therapy for six years and have a great therapist who celebrates my neurodivergence, so this isn't about accessing therapy -- I am talking specifically about protecting myself in the workplace in addition to my ADHD diagnosis and it's pros and cons. I don't want a "cure," and don't believe in one since that's eugenicist, as a reminder of my disability justice politics.
posted by yueliang at 9:14 AM on July 27, 2022

(Yeah, sorry, I was trying to acknowledge the politics you'd already stated, which I share. Sorry I didn't express that clearly.)
posted by flexible-footwear figurine at 9:19 AM on July 27, 2022

Best answer: If your main concern is workplace accommodations, are there support needs you have that couldn’t be framed as ADHD accommodations? I’m not trying to talk you out of a formal diagnosis, but since there’s so much overlap in symptoms and accommodations, I’m curious if there’s something I’m not thinking of, where you couldn’t justify a needed accommodation based on your ADHD diagnosis.
posted by theotherdurassister at 9:45 AM on July 27, 2022 [1 favorite]

Response by poster: That's one of the things I have been wondering too -- the pressing part of this conversation is knowing that getting an autism diagnosis is a taxing endeavor that I would have to pursue and try to get done within 9 months, but I'm unclear about the benefits and if there are additional benefits because I already have a formal ADHD diagnosis. I wrote that in the ask, but that is one of the core questions, as to affirm, and that's why I've been asking for experiences and anecdotes to help me think through and decide what is a good use of my time and energy. I just don't really want to squander access to my health insurance while I still have it, so it's why I am thinking about this. Everyone's contributions has been helpful and affirming so thank you!
posted by yueliang at 9:48 AM on July 27, 2022 [1 favorite]

I don’t have a formal diagnosis and wouldn’t personally seek one. I learned to mask (more or less) in middle school and that suffices for most of my purposes in the workplace. I wouldn’t seek medical input on whether I’m gay or straight, and I won’t seek medical input on this, either. So that’s where I start.

If you’re still in grad school, and you’re in training to be an academic, the most important diploma you’re going to earn is a dossier of letters of recommendation from faculty. I bring this up because letters are one of those canonical places where “do not hire” can be written in invisible ink, and this might not be obvious to you. I suspect that a disclosed diagnosis of autism could make that more likely without granting you any legal protection, because professors are very good at writing these defensively, is my understanding (caveat: I am not faculty and have never written one!). If your end goal is a different career path, though, that may be less of an issue.

What accommodations do you want? I think that piece is a question only you can answer. I think it is wise to have an answer before you spend the effort and take the risk that disclosure brings.
posted by eirias at 10:11 AM on July 27, 2022

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