Do you think getting diagnosed matters?

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It was an important step for me because what turned out to be meltdowns / shutdowns were originally misdiagnosed as panic/anxiety attacks. I was given medicine that didn't help and caused side-effects that were making the problem worse.

I ended up seeing multiple therapists that kept getting frustated bc to them I wasn't doing the work to improve or open up (thanks to the combo of bad interroception and alexythemia), getting on a lot of drugs for things like depression / anxiety, and then using other treatments to battle the list of side-effects. It took my autism diagnosis to convince the health professionals to try a different path and wean me back off SSRI's especially.

Personally it also helped because as a late-dx person, I just learned to distrust myself and listen to others only. So even though I was pretty sure I was autistic, the self-doubt and imposter syndrome didn't let me accomodate myself properly... I kept just thinking I could power through it or something. The diagnosis gave me a real thing to point to when I second-guessed things like "no this is real, its not in your head."

So for me, it was pretty life-changing. But I know others view it as less necessary and I'm jealous of them tbh.

The question is, does it matter to you? If it does, then you should make an attempt to obtain it.

There are many reasons why one would want a diagnosis. One could be to obtain legal protections under the various disability rights laws in whatever country you are in. Another could be for self-edification or understanding. Another might be for benefits. I don't know your situation or that of anyone else.

Now, your psychiatrist is correct that it will not change anything, other than possible legal protections or benefits. You will still be the same person you always have been. Others will treat you the same way they always have (or sometimes downplay the fact that you are on the spectrum). As for suicide, especially those who get diagnosed late in life, the issue might be is that there is no real support for the person after diagnosis. I ran into that in 2005 when I got diagnosed. I was told that the doctors did not know how to deal with adults on the spectrum. That might have changed in the past 20 years but again, that depends on your situation.

So although I voted that it is important, that is only because there was not a 3rd choice that was neutral. It really depends on the person and their needs and wants.

Hey everyone, thank you to all who responded to my topic. A lot has happened since then regarding my journey toward getting a diagnosis, I will try to answer you specifically later when I find enough free time and mental energy but for now, I wanted to share an update.

I recently finished reading "Is This Autism? A Guide for Clinicians and Everyone Else," and it was incredibly helpful. It clarified many things and allowed me to see myself more clearly. Based on my experiences, I strongly suspect I have Asperger's/Level 1 Autism, even though I haven’t received an official diagnosis.

I had an appointment at a hospital recommended by my psychiatrist to explore the possibility of a diagnosis. Unfortunately, the psychiatrist I saw was very dismissive. They told me there was "no point" in getting a diagnosis and that it would bring more negatives than positives due to potential labelling. I found this response incredibly biased and invalidating, especially after all the effort I’ve put into understanding myself. It feels like psychiatrists here focus more on prescribing medications than on understanding their patients, particularly adults with suspected Level 1 autism. Hearing about others being diagnosed later in life is inspiring but also highlights how unlikely this is in my country, at least.

Despite feeling deeply misunderstood and disappointed, I’m determined to keep pushing forward. This pattern of being misunderstood is something I’ve experienced throughout my life, and I’m trying to stay strong. If I can find affordable psychotherapy, I believe it could be a turning point for me.

On another note, I wanted to ask if anyone here has experience with fluoxetine. My psychiatrist prescribed it for depression and anxiety, but it’s been a challenging experience. While it helps to some extent, I’ve noticed extreme fatigue, increased sensory sensitivity (to noise and light), and worsened derealization. The derealization feels like the world is shaking (almost like an earthquake) or that my brain is spinning on an amusement park ride. It’s overwhelming and leaves me questioning if the negative side effects outweigh the positives.

I also read in the book that SSRIs like fluoxetine may not always be effective for people with autism. However, that psychiatrist in the hospital dismissed this idea, saying there’s no correlation between autism and SSRI effectiveness—and they also dismissed the importance of an autism diagnosis entirely. I’m not sure what to believe anymore. I plan to discuss this further with my psychiatrist, but I’d love to hear if anyone here has had similar experiences with fluoxetine or SSRIs in general.

I appreciate any advice or insights you can share.

My experience was that after a lifetime spent unconsciously overcompensating for something I could neither name nor comprehend, having a formal Dx was THE most kindest thing I ever gave myself.

Many medical folk mistakenly belive they are doing us a favour when they say: don't limit yourself, don't diminish your humanity, don't label yourself etc etc. However, whilst it should not take a Dx to take better care of ourselves, human nature being as it is, a formal Dx can really be a positive step in rebuilding our shattered lives of unrelenting swimming against the tide.

For me, diagnosis have been extremely important. Because I am going on disability, and I need my disability documented for that.

I didn't get the diagnosis to go on disability, no. At the time I was intending on continuing to work and stuff. But I at least needed it for ADA accommodations to be lawfully protected.

If you need work accommodations or need government assistance then an official diagnosis is important as otherwise you have nothing to support your claims and will likely get denied.

Outside of that sort of instance I think self-diagnosis can be more than sufficient. In my case I only came to the conclusion at 42 that I was autisitc. Long story short I was dealing with a therapist for another issue and they brought it up. Unfortunately they didn't have the resources or time to do a full assessment but figured beyond a doubt that i was. And in the several months since then the more I read and research the more there is no doubt in my mind it's true. Coming to that realization made so much of the previous 4 decades of my life suddenly just make perfect sense.

So while I did vote for the yes getting diagnosed matters, I honestly think it's situational.

Would I like to get an official diagnosis at this point even though I don't need one for work accommodations? The answer is yes. Sadly though it is near impossible to find a specialist that can do adult assessments, and those that are available are pretty cost prohibitive. I'm not going to spend 3-4000 out of pocket just to know, what I already know.

I'm just thankful my employer already has worked with me on accommodations even before I knew I was autistic. I just have a good employer. I can get a little stressed out and worked up to the point where I can no longer really focus on what I'm doing. Now when i hit that stage I clock out of the office for 30-40 minutes and go for a walk to clear my head.