Whats the point of getting a diagnosis

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So far i saw a few different psychiatrists and some of them said i have aspergers. Some other one said i have severe social anxiety and not aspergers / autism. But im 90% sure i have aspergers / some sort of autism. So now what ? Why do people get diagnosed if it doesnt have a treatment. Sometimes, awareness just makes life harder.
This is my thought

Forum street cred?

Some here are so rigid in their thinking that they'll only believe someone has ASD if they have a formal diagnosis from a qualified psychiatrist. I'm self diagnosed and don't need anyone else to tell me what I already know after more than 10,000 pages of reading.

Besides a "I told you so," to forum regulars, the only thing I could use a formal diagnosis for is disability tax credits. Besides that, I think others may seek it for the relief of an official diagnosis explaining the way that they are.

w/e, to each their own. Get diagosed.. for reasons, or don't; whatever.

I'm undiagnosed. I flip-flop on a diagnosis. I think, ultimately, if it was easier to get diagnosed then I probably would. As it is I have neither the £900 spare to get it privately, nor the mental fortitude to beat my way through the gatekeepers and waiting lists of an NHS diagnosis.

I'm not after treatment. Is there any? I think my main motivation would be to remove doubt. Most of the time I'm absolutely certain I'm on the spectrum. There's a ton of evidence to support it. But I never tell anyone that. Because I think they wouldn't believe me. I mean everyone has some sort of diagnosis these days, right? Everyone's looking for some medical reason so they don't have to take responsibility for themselves.

Perhaps I think if I told people I was autistic then maybe they'd make more allowances for my weird behaviour and like me more?

You could argue I don't need a diagnosis to tell people, but I couldn't tell anyone I am autistic without an actual diagnosis. I'd feel fraudulent. I suppose on some level I don't even believe it myself.

Brains are strange.

I got diagnosed because I wanted to know. I've been in trauma therapy for many years but I could never understand why I was vulnerable to trauma in the first place. I was blaming myself and hating myself for the trauma. Then when I found out I was autistic and hadn't developed certain skills for reading people's intentions, or even for self-advocacy, I was able to forgive myself and heal that sense of self-guilt. That was my main reason.

I was also several years into autistic burnout, and I was already on Disability for having PTSD and a stroke. There was no way I was going back to work. This additional diagnosis helped to reinforce my disability status so that I have a little more protection against being sent back.

Thirdly, it helps my doctors to understand me better. Some have told me off the record that they thought I might be bipolar, because of previous meltdowns including a particularly bad night in hospital when I flipped out due to sensory overload. This has helped them to see that I'm not a difficult patient, I'm not schizophrenic / bipolar (they were ruled out clinically), and that I'm just a person suffering from 50 years without any autism support. The report has been very beneficial for explaining my needs to professionals, since I'm mute and I don't self-advocate very well.

I guess the last thing is that I found some great therapists. I don't know why people say there's "no treatment" or that nothing can be done about autism. Of course there's treatment support. I've been working with Occupational Therapy for Sensory Processing Disorder, Executive Function, Interoception, Proprioception, and Self-Care all related to Autism. I've also found a Trauma therapist who specialises in ASD patients and/or those who suffered strokes. I recently started Speech-Language Pathology with a clinician who specialises in ASD adults. These resources are out there, and now with the use of Zoom and remote technology it's easy to have appointments even if they're far away.

Those are my reasons. Other people may choose not to do a formal diagnosis for their own reasons, and I support everyone's choice. We all have different needs, and different life stories.

I'm not suggesting you're suggesting this, just quoting you to make a point.

Many of us who are self diagnosed Do Know. We don't need someone else to tell us what we already Know.

I can understand some people maybe wanting professional confirmation of their suspicions if they're not sure and feel better about having someone else tell them. But, in my experience, a formal diagnosis isn't necessary for myself (and likely countless others) to Know what we know about ourselves. There's enough information on the internet and in text books to read and match 1 for 1 apples to apples to our lived experiences to Know.

Again, you didn't suggest this so don't feel attacked. But it is irritating when others here can't wrap their minds around the fact that some of us Know we're on the spectrum just the same as we Know our gender or sexual orientation.

I understand self-diagnosis. I have no problem with it. When I say "I wanted to know", it's not so much that I wanted to know I was autistic. Like you, I already decided that on my own. What I wanted for my trauma healing, was the hard data comparing my strengths and weaknesses to others. I know that's irrelevant to most people but in my case I wanted to know just how bad my "nonverbal" skill was, not in my own mind, but objectively. How bad was I at reading people? Was that really a significant issue for me, or was it something else that led to the horrors of my trauma?

It turns out I had the lowest score my doctor had ever seen for "reading people's eyes". I was in the 1st percentile for reading eyes, reading body language, and gauging a person's intent. Overall my nonverbal skills were 5th percentile. That explained a lot.

When a person has complex trauma they are plagued with guilt and shame. Your brain tricks you and tells you it's your fault. Even when I was self-diagnosed without the hard data, my brain was telling me "You're wrong. You aren't even autistic. And if you are, it's still your fault about the trauma. They can't be related. You're an awful person", etc etc. It's a thought loop which becomes hardwired and can't be undone without factual evidence or the support of others (particularly professionals / experts) to counter that message. Even with my test scores it took me quite a while to believe it, and stop some of the thought loops of shame and self-hatred.

Again, this is just me. I've had a very difficult journey through trauma, and this was one piece which really helped.

Last edited by IsabellaLinton on 07 Jul 2021, 11:38 am, edited 1 time in total.

The "know" goes beyond "yes/no" in case of proper assessment. There is a lot of useful information you might have no idea you would benefit from knowing due to subjectivity of your experience and not knowing what you don't know.

Not in my experience. IF I ever went for an assessment I’d spend the entire time teaching the “expert(s),” about autism instead of trying to glean tips in a “you don’t know what you don’t know,” manner.

It’s going on 9 years now from the time I figured out the cause of my ASD symptoms and how to treat them. I’d spend that time educating them about what causes autism and how I’ve been successfully treating my own symptoms for the last 8+ years and living a second life for it.

Learning the cause of ASD and how to treat it in myself was only the single greatest achievement of my life for less than a year, because I’d also inform them of the 9 1/2 year old neurotypical boy who is my greatest achievement of my entire life - as I recognized infant signs of autism in him at approx 12 months old and was able to persuade his parents to follow my simple instructions to treat him, which resulted in him springing back to neurotypical life and avoiding ASD development and the lifetime of difficulties that come with it.

Over the last handful of years several medical studies have come out that pinpoint exactly what I’ve been stating here for the last 9 years, right down to the same chemical sensitivity. Studies have also been done using treatment methods that I predicted would be used (FMT) that have successfully taken hundreds of children from being on the spectrum to off the spectrum/subclinical and holding 2 years later. AFAIK the method has yet to be used on a fully developed adult, but, I’m game to be a guinea pig and might go ahead and pull the trigger and spend a few grand or whatever it costs to give it a go myself. I keep saying I’ll look into it further when life settles down a bit.. but hoooooly, right now I’m busier than ever with life and work and business and family etc etc and don’t even have the time to do all the things I wanna. Hmm; someday I simply have to prioritize and schedule this.

But it doesn't matter what you or "experts" think about causes and treatment options. Assessment is mostly about universal metrics applicable to all people. Results could be of great value even just to test your hypothesis and analyze specific measures of your improvement.

Their observations would be of greatest value if I ingested the things I know would send me straight back to autistic hell, showed them my Definitely on the spectrum signs and symptoms, then treated myself and reversed things back away from Hyde to Dr. Jeckyll again and showed them how I can gain function to extremely high functioning levels/possibly considered sub clinical/off the spectrum but more likely “traits of asd, but not enough for a clinical diagnosis,” or something like that.

That’s when those nerds and their powers of observation and clinical opinions would be of use.

I myself for sure feel less autistic after I fixed a lot of health issues, including gut microbiota. But this is self-assessment, subjective by definition. Underlying traits still can be detected by a professional, using proper techniques like measuring your reactions while keeping your brain preoccupied. These techniques can differentiate between compensation of deficiency and having no deficiency. So even though you didn't get proper assessment before, it would be very interesting to see how exactly it works for you.

How exactly what works for me? Their tests? Would depend on the moment, what I've eaten/not eaten etc and the signs/symptoms I have. But overall I keep myself in reasonably good health and do what I do to treat symptoms so that I can carry on life living, working, and playing amongst the NT population just fine.

How exactly what you are doing works for you. Not whether it works, but how it affects objective measures of various cognitive functions, in detail.

A psychiatrist would only be able to determine whether it works and to what degree compared to untreated/if I were to revert myself back to as full blown ASD mode as I can swing my functions. They won't be able to determine how it works. That would be more the realm of biochemists, gastrointestinologists, pharmacists, neurologists/neuroscientists specializing in the enteric nervous system etc etc. Some guy/gal who's studied human behaviour is not going to be able to determine the mechanisms by which medicine works. IMO.

"To what degree" in detail means "how it affects objective measures of various cognitive functions, in detail". When we are talking about assessment, whatever you think about causation and treatment is completely irrelevant.

No, it’s not irrelevant. You said they’d be able to determine how it works. I corrected you.

Edit: Perhaps you mean to say they could determine how well, it works? There’s a difference between the two statements.