Why Do People Hate Self-Diagnosers?

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Roket123, I strongly relate to that "broken person" feeling before finding out why the differences existed and that there really was/is a reason, yes.

Also relate to that self suspecting period; it was mixed, for me, with both an "Aha! There's no way this is not me" of recognition, as well as "No...can't be." A very strange feeling, that I sometimes still get now even after confirmation.

And yes, kraftie, I second the request for your old avatar back! Will we have to start a petition?

Last edited by BirdInFlight on 21 Jun 2015, 12:13 pm, edited 1 time in total.

Yes, I think that probably is part of the problem. I often wonder what may have been different about my schooling/childhood in regard to a diagnosis if I had been born in 1993 instead of 1983. I suppose there is a good and bad side to either situation. More information could have given me more confidence, but a label may have made me feel more different. Of course, I was still bullied and picked on, anyway.

Well I'm born 1997 and it still happened. It took me ending up in hospital for a problem to be seen. That scar will probably never heal fully - it's still clear as f**k and it happened in march.

I would prefer a real photographic-type image (says the man with a drawing of a thing).

I had that same period. I first learned of autism from some old psychology books that were donated to my highschool library. I used to love reading about the workings of the human psyche.

When I was 15 or so I found a copy of Son-Rise at school. While I was not a completely disfuntional child staring into space and rocking (well, not constantly anyway) I felt some kind of recognition. I began scouring the library shelves until I found what I needed. A diagnostic manual with a list of symptoms (we had 4 or 5 large colleges in the area, you wouldn't believe the books I could find in my highschool library!). I wasn't severe enough to be diagnosed by the old standards but I remember going over that list over and over wondering if you could be just a little autistic but at the same time the idea of having something these books basically described as a incurable curse... Well even after I learn that yes, you can be just a little autistic, it took a while to accept.

I am recently self-diagnosed at 29 (there's no doubt) and do not live in a place where there are professionals who are capable of (willing to) giving an adult diagnosis. Autism is so child-focused and Aspergers so relatively new and underdiagnosed that there just aren't adult specialists. I've just read several comments about all of the behavioral traits being identified by a psychologist but the diagnosis missed. The professional community simply isn't capable of the type of Aspie diagnosis and support that is needed, especially outside of major metropolitan areas and top-tier medical/psychological campuses. All of the adult services in my area are for moderate to severely Autistic people, not Aspies. Not for those of us who need just social and relationship skill training.

I've also read that diagnosis as an adult Aspie can be dangerous, and based on recent experience I believe it. It can lead to discrimination where there would be none if you disclose to an employer or have a diagnosis in your medical records. You could be fired, passed over for a deserved promotion or charged more for insurance. It's really an as-needed, or as-available, diagnosis. If you can function alright, pass as NT except to trusted friends, use the online and -if lucky- local Aspie support and a regular psychologist to navigate your challenges, great. I am still seeking diagnosis but lack a competent therapist because of where I live.

"Self-suspect" rather than "self-diagnosis"...hmm, how about "self-evaluate"? That seems like a "middle-of-the-road" term.

Born 1979, and a lot of what some of you described happened to me...the elementary school insisted I go to various therapists, none of whom had a clue about what was "really" going on with me...their opinions ranged from "just very bright and shy" to "too attached to the mother/socially anxious." No one suggested medication (this was the early to mid-1980s) - my mom has told me that she would never have stood for that. She always "knew" there was something "different" about me but, of course, who would have thought "autism" back then, when I didn't display any of the severe/"obvious" behaviors?

When I figured it out 5 years ago, I was 31. Pair my age with being female, and you can probably see the difficulties in getting an "official" diagnosis. In daily life, I can manage okay...even if I could find an autism specialist, there's really no point...BlazeJester brought up some good points about how damaging it could be to get one now.

As I have said (sorry to keep repeating myself), "knowing" gives me peace of mind and a personal explanation for why I am the way I am.

But...maybe changing the term to "self-evaluating" would diffuse some of the hostility/anger...

This feeling of being “broken” caused a lot of distress throughout different stages of my life. What’s interesting (at least for me) is that I never ever would have equated my issues with having an “impairment in social interaction” or a “deficit in social communication and social interaction”.

The Autistic Self Advocacy Network (ASAN) uses the phrase "self-awareness" though I would prefer "self-assessment" since that is what most individuals would do to arrive at a conclusion about themselves. That way, assessments may abound and be either professional or self, or both, while only a professional assessment would lead to a diagnosis.

Good reason. That phrase could work.

It's uncanny because that's exactly the way I felt too, on both counts. The "broken" feeling haunted me my whole life; at the age of about 11 I even started getting self-help books from the library, and taking an interest in psychology and human behavior, because I innately understood that there was something missing in me that I knew didn't seem to be missing in other people.

I also felt all my life like the problems, challenges and issues I experienced were not experienced by anyone else -- because I never even heard about anyone else having them -- and therefore I must be a complete freak. It actually made me feel a sense of deep shame about myself, because I couldn't understand my issues as they seemed so bizarre. Even just things like sensory issues and sensitivities -- I had zero basis from which to even accept that what I felt was real or valid or that there could be reasons behind the overload.

I do remember hearing about autistic people, probably from something on TV back in the 70s, but it was always very severely affected people and I honestly believed that was the only autism there was. Like you I had nooooooooo clue that I could have anything in common with the people I thought to be the only autistic there could be.

Fast forward to about eight years ago or so, when I first knowingly ran across information on Asperger's. I felt like I'd been struck by a bolt of lightning. It was honestly quite a bad shock to me -- the recognition. I wasn't looking to diagnose myself with anything -- I was actually curious because of someone else's diagnosis of it, and I knew nothing about it so, I'm always keen to know something I don't know.

But it really was a shock, because it was the first time I had ever read about MY weird stuff. All the things about me that I was ashamed of because I believed nobody else did them or had them or acted like them or felt like them, therefore they were nothing but my own "failure to be normal."

When I read that all of them were actually "a thing," and that thing actually had a name, and that other people actually had this thing with a name too.....I was stunned.

And to be perfectly honest -- and this was only my initial reaction, I don't feel this way now -- I was horrified. I was really upset even to suspect (there's that word again, haha!) that what I was reading actually matched me and thus I might be THIS. The reason I was so upset was because, just as you've said, I never dreamed that my issues could actually be quantified and qualified in this official collection of stuff like "impairment in social interaction" and yet, I realized that it could.

It made my blood run cold because I just never thought I "had" anything, for that matter. I just thought I was a complete failure despite all my efforts in life.

It took me seven years to even dare to start the ball rolling on seeing about an evaluation. I had to get to a place where I would be okay knowing either way.

Thank you!

I am sort of self diagnosed, as my mother told me that I had asperger like tendencies, and so I delved into it, and a lot of the symptoms matched me. I am not upset about this, as it explains how detached I was as a kid from the others, not joining the "pretend games" because it seemed immature, and the inability to talk to others, etc cetera. I take pride in my differences because you can't change who you are, I do not find socializing as an entirely important thing, whereas learning is important to me.

Your post brings back a lot of memories I had immediately prior to diagnosis. The process of learning about Asperger’s (I had read ~ 20 books on the topic including Tony Attwood’s “The Complete Guide to Asperger's Syndrome”) led me to relive several painful and/or uncomfortable episodes from my childhood. The Asperger’s diagnosis framed these uncomfortable and troubling situations into a totally different (and understandable) light.

I used the same term (“uncanny”) to describe my reaction (of “discovering” Asperger’s) to a close relative in the mental health profession. It seemed “too good to be true”. By this, I meant how possibly could others have this same “thing”?

I think, I am finally at a state of peace where I can answer the question posed to me by the clinical psychologist who originally diagnosed me - "What does having Asperger’s means to me?”

At the same time, I have not fully answer the other question she posed, which is: “How do I move forward in life knowing that I am on the spectrum?"

I believe this (answering that second question) is what keeps me coming back. Also, reading threads like these where people talk about their process of self-discovery.

On not being noticed: I wasn't diagnosed until adulthood AFTER I had figured out that I probably had some kind of autism. Here are some of the reasons why I think my AS wasn't picked up in childhood.

1. Autism wasn't as well known back then as it was now, and only the severe cases were in the public consciousness. Asperger's Disorder wasn't even in the DSM until I was 10. People certainly noticed that I was a socially awkward, obsessive, clumsy, disorganised child- in fact, I had physiotherapy, occupational therapy and speech therapy in the hope of improving some of my issues, but they never would have linked it with autism.

2. Autistic traits run in my family. Some of the way I acted was seen as normal, because that's what everyone in my household was like.

3. My autistic traits were mistaken for other things, like being shy or intelligent.

4. I was a very well-behaved child who did well academically. If you're struggling in any area, but you aren't failing at school and you aren't causing problems for other people, noone thinks that you have a problem that needs fixing.

I am self-diagnosed. I was actually looking up the subject for one of my children when reading about it, it seemed like I was reading about my life and how I do things.. as if someone was in my head an knew how exactly how things happen for me. Now when I mention I have Aspergers to people the I have known for years or my co-workers whom I have only known for a couple years they usually come back at me with a "no sh*t..." like it was completely obvious to everyone except myself. Taking the time, energy and resources to get a proper diagnosis to something that I and pretty much everyone who knows me well enough, already knows is useless. All I get out of it is confirmation and a piece of paper telling me what I already knew.