Do you think getting diagnosed matters?
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.
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- Late-Dx Autie in Milwaukee
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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.
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.
I've often wondered if my experiences are being mislabeled too. The side effects of medications like fluoxetine have been particularly challenging for me, and I’m starting to wonder if they’re doing more harm than good.
I completely relate to the self-doubt and imposter syndrome you mentioned. Even though I strongly suspect I’m autistic, I keep questioning myself and feel like I need external validation to truly accommodate my needs. Hearing that your diagnosis helped you trust yourself and advocate for better care is really inspiring. It’s frustrating when professionals seem more focused on dismissing or medicating symptoms than understanding the bigger picture, especially for adults seeking a late diagnosis.
Your journey sounds both difficult and empowering, and I’m so glad it ultimately led to a better understanding of yourself. I hope to reach that point too, whether or not I get a formal diagnosis.
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