What is the benefit of an ASD diagnosis as a high functioning adult?
May 31, 2020 7:08 AM   Subscribe

How have you gained personal benefit from a formal professional diagnosis of high-functioning autism / Asperger's?

Well that's it on the tin.

For some years, I have felt that I have features of Asperger's but not fully sought assessment. I don't see it necessary for the substance of the question to discuss those features further.

I have achieved high levels of personal and professional success and have no substantial impairment that needs rectification by social or medical services.

And yet, this question recurs to me that I am unsure needs resolution.

What benefits have you found personally from a formal diagnosis?
posted by chiquitita to Human Relations (9 answers total) 16 users marked this as a favorite
 
Ok, my experience is with ADHD diagnosis and not ASD, but I think the following still applies. For me, I was high functioning, until I wasn't anymore. I gave birth to some kids at a later age and went through some mental illness stuff and at 40 the ADHD started to just kick my ass and I was not prepared for that. I went for the diagnosis both to reassure myself that I was actually going through something, and also in case I ever needed to pull it out for ADA accommodation. Having a professional agree that yes, my brain works in this way that sometimes conflicts with other people's expectations, was gratifying to me.
posted by cabingirl at 7:32 AM on May 31 [5 favorites]


[Comment removed - please frame answers in a way that are helpful to the asker.]
posted by jessamyn (staff) at 10:11 AM on May 31


have no substantial impairment that needs rectification

For me, the diagnosis is not about flaws that need fixing. It's about quirks that I can feel confused, proud, annoyed, amused, or a bunch of other ways about.

But hearing from other people who share those quirks is definitely good for me, whether it's reading stuff by other autistic people or following people from the autistic community on Twitter or whatever. It makes me feel less alone, and sometimes I learn things that are useful in my own life.

I think if you're already comfortable calling yourself autistic and learning from other autistic people — and maybe participating in autistic community if that's something you want — then a formal diagnosis might not mean much. But if you're second-guessing whether you belong in the community, or whether other autistic people's knowledge and insights apply to you, a diagnosis might well help with that.
posted by nebulawindphone at 12:27 PM on May 31 [3 favorites]


I've never gotten formally assessed but I'm definitely somewhere on the spectrum. My understanding is that most of the official assessment tests that are available to psychologists are only meant for children and most practitioners are not used to assessing adults so might do a poor job if asked. So honestly I didn't see much value in jumping through a lot of technical hoops to get some sort of actually official diagnosis when it wouldn't provide me any value.

But, about 10 years ago after switching psychiatrists and doing some self assessments online, I described my symptoms to them and said I suspected I met the criteria for DSM-V Autism Spectrum Disorder and wanted their opinion. They walked through the criteria with me and we both agreed that I met enough of them to qualify for a diagnosis. But we didn't make it "official" in any way and I doubt it's in my medical records as technically I was being treated for anxiety/depression. I found going through this to be very helpful as it gave me more confidence in my own self-assessment, which helped me understand myself better.

If I didn't already have a relationship with a therapist/psychiatrist I could ask, was aware of a local psychologist trained in assessing adults, they had availability, and I had good insurance, then I would look for a formal assessment. That is more likely now then when I was looking because of changes in attitudes. For me it was important that someone else with training told me "yes, that makes sense", but it wasn't important to have it written down on paper anywhere.
posted by JZig at 12:35 PM on May 31


Definitely. I used to hate myself and blame myself for every one of my social failings because I was some sort of miscreant or broken, and now I simply know my brain is different. I don't get as emotionally bent out of shape or angry and my self-loathing has mostly been eradicated. I also have learned to be patient with others and to learn how to be more socially attuned and I am far, far more comfortable. It also allows me accommodations at work, which I haven't had to use, but I can if I need to so that my mental health is not completely eradicated.

It literally saved my life.
posted by Young Kullervo at 1:03 PM on May 31 [4 favorites]


I have a friend in a similar situation who recently made the decision to get a formal diagnosis. For her, it has been a way to try to make sense of whole bunch of characteristics that previously just been a set of random quirks. The goal is to build a more coherent sense of self (why am I the way I am), a chance to connect with others with similar divergent experiences and perhaps access to tools that she might not have considered. For example, she recently bought a hammock chair and has already found it helpful when she feels overwhelmed or over stimulated.

And if you are AFAB, you should know that this presents very different in girls than boys and in adults than children so if you want an assessment, you should be sure that the person is familiar with what high functioning autism looks like in adult women. If you haven't seen it already, you might be interested in Tania Marshall's book, I am AspianWoman. There is a summary of the characteristics here but my friend found it very helpful to read the individual profiles to get a sense of where there similarities between her experience and theirs.
posted by metahawk at 1:12 PM on May 31 [4 favorites]


I don't have a formal diagnosis, but at the urging of a good friend who is a clinical psychologist and my therapist, I took the Autism Spectrum Quotient Test and scored within the autistic region. (I have a family history of it too). The ASQ isn't a diagnostic tool by itself but it's evidence-based.

I ended up opting not to pursue a formal diagnosis because I didn't see the point, but I have to say I did find the conversations with my therapist and other knowledgeable folks about the topic quite valuable. It was super helpful for me to be able to conceptualise some of my traits as a natural way my brain works rather than as being something pathological (e.g., difficulty accessing my own emotions, low emotional affect in general, ability to dissociate and block out the world, feeling like I intellectualise my way through most of my social interactions, etc). Also, this is probably not relevant for you, but there seems to be a link between autistic traits and being trans, and realising this was quite helpful for me in understanding some of the ways my story was distinct from the "normal" trans narrative but had a lot in common with the "autism spectrum" trans narrative.

Also, I've found it really helpful to use some of the supports and interventions that are typically used for autistic people. For instance, I have a hard time sleeping at night but I started improving a fair bit once I started sleeping underneath a much heavier duvet -- I got the idea to try because weighted blankets are often really therapeutic for autism.

So, do I have high functioning autism? I dunno and I don't care that much, because ultimately it's a way of arbitrarily drawing a line somewhere on a continuous distribution -- and whatever the diagnosis, it's clear that I'm somewhere further toward the end than most people. And in any case it was certainly really useful for me to have those conversations with clinically-savvy people about how my brain works, and to gain some more conceptual vocabulary for being able to think about myself. To the extent that pursuing a diagnosis would give you those things, it might be worth it. If you already have those things and you don't have any impairment that needs rectification, then it might not be.
posted by forza at 3:56 PM on May 31 [2 favorites]


I took the same assessment and talked to my psychiatrist about getting a formal assessment while my youngest was also going through her formal assessment. He agreed I am autistic but pointed out that getting formally tested brought no additional benefit to me. It would have been on my medical records and denies me even more insurance and other legal stuff due to the frankly awful situation here. I don’t benefit from the meagre accessibility a formal diagnosis would give as an adult. I have pushed for clinical diagnoses for my children to get access to highly subsidised treatment, legal protection and school help but that was also double edged Re insurance and rights. Check your local disability laws before you get formally diagnosed.

It’s been a huge benefit in parenting because I can see what is likely autism shared by us and what is regular parenting stuff not, and I look at resources for autistic parents which are more helpful than mainstream. It also makes me aware that my sociability is performative and thus a job that is tiring. I need to and do plan social events as work, enjoyable but an effort. I don’t feel awkward about reading the same book or watching the same show a dozen times or spending an afternoon sorting things by colour. That’s now my normal, not a weirdness to tamp down. And I’m a lot more protective about noises and smells and sensory exhaustion because I’m not being over sensitive, it really is bloody annoying. My house is a lot calmer (not less messy though!).
posted by dorothyisunderwood at 7:13 PM on May 31 [5 favorites]


This is not my own personal experience, but someone else's - I was very moved by this article:

The best $500 I ever spent: My autism diagnosis

which I found via this discussion on the blue:

“She’d watch & watch & watch, but could never figure out when to join”

I hope that's helpful.
posted by kristi at 9:20 PM on June 3 [1 favorite]


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