Do you think getting diagnosed matters?

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I've been wondering about this a lot lately, especially after an experience I had recently. I was listening to Autism Guidelines for Everyone, and it pointed out that late diagnosis and lack of psychiatric or psychological support for people with autism can actually increase the risk of suicide. Hearing that made me feel terrified and angry.

This really hit hard because at my recent appointment, my psychiatrist told me that getting a diagnosis wouldn't change anything and questioned the point of it all. she pointed out that I should accept and love myself without needing any diagnosis, and she dismissed it as something that wouldn’t impact my life. But everything I’m learning suggests otherwise. Knowing you’re autistic can mean access to support, understanding, and even resources that can make life significantly better. So hearing her say this felt dismissive my worries, like she didn’t care about what I needed or what I was going through.

I went to her because she seemed a good psychiatrist, but now again I’m feeling let down and like I wasn’t really heard.

I’d love to hear what you all think. Does getting diagnosed matter to you? Did it make a difference in your life, or do you feel it's important for those who suspect they might be on the spectrum?

There seems as little point in getting diagnosed at my age as there is waking up.

I'm not officially diagnosed and a diagnosis may not ever be possible due to the way they wrote the criteria. There weren't enough outwardly clear traits early enough for ASD, but the traits I do have showed up far too early to be attributable to the alternatives.

That being said, if somebody's traits aren't clear enough to be picked up on in childhood, most of the benefits come from knowing and being able to learn from other folks, or just give oneself some grace and reorient to a lifestyle that's more compatible.

The big advantages to getting diagnosed as an adult have to do with having better numbers so that hopefully in the future the criteria will match a bit better with what people are actually dealing with.

It depends on the individual. Some people need a professional validating their suspicions others don’t.

It has helped a lot with my self esteem. It explained why I made key life decisions that went bad, specifically that it was not character flaws but then way I am “wired”. It helped me know my weaknesses and strengths. Plenty of times in life you cannot avoid situations that are bad for you, this knowledge helps me find ways to mitigate these situations.

Again not everybody needs professional validation to gain these benefits.

In many places, your doctor isn't wrong.
In Connecticut, state funded mental health services go away when you become an adult.

A diagnosis doesn't help others understand you.
Few understand autism so it is a "mystery label."

It isn’t important to me personally. I am so high functioning I don’t need practical support, so the health service cannot really help me. It is emotional support and connection that I need, and I can get that by connecting with like minded people (for example here on Wrong planet), or by paying for talking therapy.

From someone who was diagnosed, at the request of my wife, at age 60:

Your psychiatrist is an idiot. Understand that most psychiatrists know very little about autism itself, and to the extent they are consulted, it is for symptom reducing drugs.

If you want to get a diagnosis, get one. Any neurotypical person who says it won't make a difference is a terrible person. Listen to your own heart. It might in fact not make much of a difference, but it might make a great deal of difference.

It was important to me because after the diagnosis, everything started making sense: all the snubs, all the laughter (directed at me), all the missed opportunities, et cetera.

I feel much better about myself for finally knowing what was "wrong" with me all my life.

I didn't vote because there's no "don't know / it depends" option, and I think it depends on the person and their circumstances.

I kind of needed an official diagnosis because my employer was drafting me into a new kind of work that was panning out very badly, and it was pretty clear that my ASD (which I was already fairly certain I had) was responsible for the fact that I was a bad fit for that work. There was no way they'd have given me adjustments without the DX, and I feared I was otherwise in for a lot more stress and misery, and that I might lose my livelihood. The DX worked and they backed off and made enough adjustments, though I was disappointed that there was no attempt at fine-tuning my job to take advantage of my Aspie strengths etc., so I felt like I was just being let off some of the work.

Beyond that I was unable to get any help at all, except the offer of psych meds from my doctor, which I haven't taken up because I don't think they're at all appropriate for me and I'm wary of their side effects. As for psychiatrists, I wouldn't use one myself. I don't see ASD as a psychiatric problem, it's a neurological difference / disorder, I'm quite sane. Though I allow there's likely some overlap and that the psych profession, or some people within it, might know something about ASD, and some people with ASD can end up with comorbid psych issues that a shrink might be able to help with.

I was diagnosed late anyway so I was already used to winging it. What I'd like, but probably won't ever be offered, is practical help - either financial or the opportunity to talk with a real expert on ASD about how to better hone my coping strategies. But as far as the services are concerned, if you're an adult, you're cured and they abandon you. Buying good services is out of the question, because I'd want a money-back guarantee in case I didn't see any benefit, and the kind of help I'd need probably doesn't exist or is prohibitively expensive.

So I continue to wing it, and since retiring my DX has been entirely useless to me, though I suppose it's there in case I ever need to "prove" my condition to anybody, not that it proves much except in the eyes of a bureaucrat who must have a piece of paper signed by the Great And Good before they believe anything.

I don't see myself as all that severely ASD anyway, I think I've got enough NT wires in my head to make a fist of it, and I'm not an unhappy person by any means, I don't see my life as a failure. According to the DX I'm about halfway between not Aspie and as Aspie as it's possible to be. There were no severity levels in those days, not for that diagnostician anyway, though she knew quite a bit about ASD.

Just my personal experiences and views.

I'm not diagnosed but I'm also not aware of any services that would be available to me if I was. I suppose it might depend on where you live, but it doesn't seem like there's much out there, especially if your ASD is mild. I also don't have a job so there aren't any job accommodations I would be seeking.

I think it's too soon for me to actually know if it changes anything. It allowed me to look on some of my problems from different angle and redirect my overthinking to some other tracks But frankly speaking, I was hoping for more. I didn't have any of this "wow effect" so many people are talking about. I hoped it'll allow to get rid of other unnecessary labels and neatly explain everything with one label "autism", as Ockham recommends But it doesn't work that way, at least not for me. Autism is entangled with other issues and it's hard to tell what causes what, and I'm not even sure if it's useful to know. Probably, if I had less anxiety and "more" autism, it would be easier to tell things apart, and maybe even treat autism as an identity (though I generally don't identify with any labels).

So, now I'm thinking that maybe it would be better, if I just went to a therapy in some place specializing in autism (preferably to an autistic therapist - there are some places like that where I live). It would likely be better financially, but I guess I still would have to go through some diagnostic process during therapy.

For about twenty years there was an organization called Roses for Autism that provided job training.
A private organization, it was a "vertically integrated" company that had all sorts of jobs.
Taking orders on the phone. Driving the delivery van. Growing roses. Doing IT for the web site.
Making flower arrangements.
They did not require a diagnosis.
They felt they could interview you and decide whether you were in need of help they could provide.

It was started by a father who wanted to help his son with autism.
They did social training. You weren't allowed to eat lunch by yourself.

Really depends on the person's needs and their circumstances.

Personally, I would need an official diagnosis within a narrow window of time.

I don't think I'll survive past teenage years not knowing in this lifetime...
And knowing too soon would drastically change my fate over who knows what....

While solving the question why I'm different doesn't fully point let alone solve the reason for the issues I prioritized, it still gave me something to work on.

The services? The accomodations?

Sure, had I've been younger, diagnosed at this era at that particular same teenage years and if my household could afford said services, some aspects of my life would be easier.

Yet, at this lifetime, I went through without it and I still don't need any of it now.

Way even less likely will ever need any.

Regardless, I'd rather had a fate of meeting my Sped teacher than not.


And, I'll likely fail to self diagnose because I cannot relate to the common autistic stories.

Most common autistic stories are mostly about socialization, trauma and intolerance, which isn't something I relate well.
And 'social differences' is far the least of my problems when it came to looking for answers.

I'll likely mistake myself for ADHD/BPD for the symptoms of unprocessed decade/s old emotions alone (that I prioritize to get rid of, yet managed to heal it myself; which is unlikely I'd able to alone if I never got officially diagnosed in the first place), and a misdiagnosis would very likely much be a disaster for me.

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For me it has been important. Not knowing whether I had it for sure made me feel more anxious in general about my unfolding life experiences.

With an autism diagnosis, the context of my life became more clear.

I forgot the "self-knowledge" angle. True, self-knowledge is nearly always a good thing, just that in my case the DX didn't much change my feeling about whether or not I had ASD, as I already felt that the balance of probabilities was that I had it. So I'd have almost certainly continued to look at myself as an Aspie, DX or no DX. But it would be very different if a person had no prior inkling, went for a barrage of tests for some reason, and heard it for the first time from a diagnostician, especially if they had a lot of faith in the diagnostician's competence and honesty.

When I went to see my doctor to ask for a referral, I was asked why I wanted a DX, and I mentioned the matter of self-knowledge, to which the answer was "yes but you'll never know." It was a strange interview, because although the doc was throwing a lot of "best not bother" suggestions like that at me (including refusing to hear me read out my reasons from the written notes I'd prepared), the referral was eventually granted. I suppose their hope had been that I could be talked out of it, but my workplace situation had made me so desperate that I stuck to my guns. Moral: don't back down if you really think you need something.