Self-diagnosis

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When I was growing up in the 1980s, the only autism that was mentioned was severe classical autism. Aspergers was not defined at that point in time. My social developmental stunted around age 11, yet I was quite advanced in my studies. I can remember being told after a parent teacher conference that I was at least two years ahead of my classes, yet socially was two years behind. The teacher wanted to hold me back because of this issue. My parents would not allow me to be held back just to catch up socially.

I also drove the teacher crazy with my obsessions over certain topics, as I would often correct her in science, math and history if she made a mistake. There were times where I was more knowledgeable about the material than the teacher and could have taught the class if I would have been allowed to do so. At the time, there was no real label for this other than being gifted.

As my life progressed, I always knew I was different than others. I could never fit in to any group, no matter how hard I tried. However I could never understand why and that bothered me. It was not until I stumbled onto a self-test did things start to make sense. the research that I did just reinforced what I had found: I am very likely on the spectrum. That is how I came to self-diagnosis. It helped answer the question that had plagued me my entire life.

Now that I am old (late 40s), getting a formal diagnosis would not be worth the costs for the net gain. While expensive, the formal diagnosis has other costs that you do not see. It could actually cost me my career, as people in higher education are much less forgiving about disabilities that they appear. I have overheard coworkers making fun of students on the spectrum. If they are that way with students, how do you think that they would act towards one of their own? I have to walk on eggshells around them all the time least I be discovered. These are nerdy chemists acting this way.

I also have skepticism of psychiatry. I believe they help, but I think most follow the protocols of others and do not have innate skill. Would I select a newbie with no experience, or someone older with fixed and often passe beliefs. I'm talking of the average doc here.

I don't "know" I'm autistic without a dx but at the very least I AM neurotypical, and have been since birth, not due to trauma or social anxiety, or any of the other diagnoses that I've ruled out. When I see the norms for mankind proven by research I can't even relate most of the time. Others have always been the weirdos to me, and the "weirdos" have always felt safe and are far more interesting as people.

I guess you mean you are neurodiverse or you are not neurotypical.

Same with me. What I needed was realisation that how my mind handles sensory and social information is fundamentally different from "standard". Once I understood this, the door opened to slowly learn what I really need and how to manage my "special needs" so I don't go insane.
The rest are just labels.

I don't think this topic will ever get old because it's a perennial question.

The Americans with Disabilities Act (ADA) is a federal law. There are certain disabilities of which employers are required by said law to offer "reasonable accommodation" to disabled employees so that they may be given the opportunity to work effectively. It wouldn't be feasible to assume that a self-diagnosed autistic person could/should expect that their employer should just take their word for it and provide accommodations they might ask for. This is a legal aspect of the topic.

My feeling is that unless a person is diagnosed as autistic when they're a child at the behest of the child's parent or parents, I would assume nearly every adult person starts their journey with self-diagnosis. I know I did.

I don't view self-diagnosis as a stigma or something someone should be ashamed of. I think it would be wonderful, for example, if WP's membership increased tenfold and most of those new members were self-diagnosed autistics. The more people here the better. Conversely, I don't see why it would be considered wrong, incorrect or discriminatory to ask that a person refer to themselves as self-diagnosed if they are. I don't recall ever referring to myself as definitively autistic on WP when I was self-diagnosed. It's possible, but I don't recall that since in contrast I made a point to not declare myself as definitively autistic until I sought and received a professional diagnosis.

I absolutely respect a person's decision to remain self-diagnosed. I see no shame in it. Maybe it's my black and white thinking, but it's a fact that a person who has not been professionally diagnosed is a person who has not been professionally diagnosed.

Thanks for correcting that. And I proofread too!

I think a well-researched self-diagnoses is a good workaround for people for whom a professional diagnosis is unavailable for whatever reason.

I would say that I mostly agree. I have very limited faith in our current model of mental health and behavior conditions and disabilities.

I think psychiatry needs a Copernican Revolution of switching from symptom-based DSM to mechanism-based classifications.

Could you give examples of such classifications? I can describe the mechanism that extends a crack, but have not run across the term in social sciences.
How about a system that recognizes blends of conditions? AS is plenty diverse already, and mine came with an attachment disorder, and a touch of bi-polar. Then it led to PTSD and a new range of symptoms.

BTW, I was recently in a forum trying to remember "neurotypical" and first filled in with my usual translation of "NT" as "Normal Thinkin'", which got a chuckle from the guy in the biz.

By "mechanism" I understand identifying what underlies the symptoms. Is it some neurological balance going rogue or not yet healed psychological trauma or an unadressed special need or some blend or positive feedback loop of them?

It would be hard as you need to bring together psychology, neurology and medicine, each of them using its own language. But it's needed.

That mechanism may be too complex to model. We keep finding whole new sections of it. Social science is like a fractal, in that wherever you look, there is more than was previously seen. I expect that we are even influenced by things that are as hard to study as dark matter.

The current collection of psychological assessments used for diagnosing an adult who has lived with and adapted to their autistic traits for say forty years is purely interpretive and subjective at best. Research on masking and compensation is still in its infancy and there is no masking assessment tool. Several research studies are trying to develop some. There really is no diagnostic standard for ASD that achieves either validity or reliability. Consider these quotes from a recent study; Autism in AdulthoodVol. 1, No. 1, Examining the Diagnostic Validity of Autism Measures Among Adults in an Outpatient Clinic Sample

"When studying the accuracy of diagnostic tests, it is best to compare the results of the tests being studied with an “independent gold standard,” that is, a test that we know is very good and that is totally separate from the tests being studied. In this case, there is no clear “gold standard,” so we had to compare the tests with the next best thing—the clinicians' final decision about whether or not a client has a diagnosis of ASD. It is possible that the clinicians did not make the right diagnosis. Also, the diagnosis was not “independent” of the tests being studied, since the clinicians used the results of the tests to help make the diagnosis. "

"There is no clear “gold standard" translates into there is no standard for adult diagnosis.

An applicable analogy might be the use of x rays as a diagnostic tool. A broken arm can clearly be diagnosed by an x-ray. It will literally be black and white. A chest x-ray can show an abnormality but it cannot definitively diagnose what that would be.

Conclusion; self-diagnosis is as good as any nonexistent diagnostic gold standard. Get on with improving your life. You will know rather quickly when quality of life improves due to self diagnosis which is the whole point of getting a diagnosis.

Chest x-rays often DO definitely diagnose things (like pneumonia).

As for the “self-diagnosis” thing, I take people at their word. I don’t feel most people would it would be advantageous to expose to others that they self-diagnosed themselves with autism.

[quote="kraftiekortie"]Chest x-rays often DO definitely diagnose things (like pneumonia).

Chest x-ray: An x-ray exam will allow your doctor to see your lungs, heart and blood vessels to help determine if you have pneumonia. When interpreting the x-ray, the radiologist will look for white spots in the lungs (called infiltrates) that identify an infection.

Chest x-rays are interpreted and not definitive and exhibit a significant rate of type 1 and type 2 errors (false positive, false negative). They also cannot determine the nature of the infection, viral or bacterial.

My therapist, who I was seeing for depression / anxiety, told me I was ASD/PDA. I trust her (ex NHS). It’s been disturbing but very useful and I can now see prior burn outs for what they are and can understand both why it seems to be getting more forefronted and that it would be risky to return to work without appropriate accommodations. But, I don’t need paid support, so I don’t see a need to get diagnosed formally. I would welcome others’ opinions.

Based on my assessment experience as an adult, I'll interject that information related to how I was as a child was very important and was a necessary part of the assessment. I could not have gone into the assessment process offering no factual information about my childhood and received an assessment. Even though my Mom died before my assessment and my Dad wasn't around enough to offer conclusive recollections, I was fortunate enough to have my Mom's writings about me from birth through toddlerhood. Those writings indicated behaviors that were atypical and were in line with ASD.

Keep in mind that an adult assessment isn't mutually exclusive to childhood history. As such, if an adult and the adult's parent/parents stated that the adult acted as NT as any other NT child but that same adult was suspecting/presenting as autistic as an adult I doubt they'd be diagnosed with ASD.

There may not be a "gold standard" test for adult diagnosis, but an adult assessment includes childhood history as being integral to the process.