Question to those who Self-Diagnose themselves?

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Okay, please understand this is not going to be one of those 'you can't self diagnose yourself, blah, blah, blah' because I've seen a lot of those threads and they're quite stupid.

I'm just wondering how you came to the conclusion that you have Aspergers/Autism and why nobody saw that you had the condition when you were younger. What kind of research did you go through? Was it difficult to accept that you may have such a condition or was it a relief to finally understand why you are the way you are? How did you hear about Aspergers/Autism?

I understand those who self diagnose... kind of. I believe... In fact, I know I have paranoia but I am too ashamed to tell my mum so that we can go to my psychologist and get an actual diagnosis, so for now I am just self diagnosed with paranoia.

Are you planning on getting a diagnosis? Are you content with just being self diagnosed? Have you tried to get a diagnosis and have been told you don't have Aspergers/Autism? Is there a reason you haven't gone to your doctor/therapist/psychologist to get a diagnosis?

Please don't take offence to this and argue with me or something, I don't cope well with that kind of stuff. I've seen how much flack people get when bringing up self diagnosis and I don't know if this is considered rude or not.

Coda,
You did not specify if this post is only for those who still self diagnose or if it is open for those whom did self diagnose and eventually got DX'd by a specialist. Sorry if it is only for the former.. I self dx'd before I finally found someone qualified to diagnose an adult female. To answer your questions, I was not diagnosed as a child because in 1989, they did know that much about AS and only the most stereotypical cases were being diagnosed. I came to the conclusion a) from watching a documentary about it and relating to the individuals and b) from doing A LOT of reading (including Tony Atwood). However, since I do not have anxiety (except it very extreme situations) and generally can remember faces, I thought that I did not have AS. Fast forward a year and I happen to make some friends online who have AS. Just from reading their posts and whatnot, I really relate to what they are saying and start considering that I may have it. I do even more reading and think to myself "If I have it, then I should talk to a specialist to see what they think, since I may just be exaggerating my symptoms." Then I did end up going, and my suspicions were correct. I was not diagnosed as a child because in the late 80's, not that much was known about ASD... I think that if I were born today, I would certainly be diagnosed with HFA.

As I have written elsewhere on Wrong Planet, I was simply bored and surfing web sites in January 2014 when I decided I would look into Asperger's Syndrome (AS) (I had an Aspie partner years earlier). One of the search results was the now-famous WIRED magazine online version of the University of Cambridge Autism Research Centre Autism Spectrum Quotient (AQ) test. I scored well beyond the threshold among known Aspies and took four more Cambridge factor tests which showed similar scores.

My lifelong characteristics are classic AS. But, professional awareness of autism was rare when I was a child, and AS wasn't even discussed professionally in the United States until I was in college, and, even then, it was considered a childhood disorder. So, I wasn't diagnosed. Also, like Wrong Planet owner Alex Plank, I learned a LOT of socializing skills through watching movies and used those skills to mask unknowingly. Doing this was very exhausting (still is) and, as an adult, I choose not to mask most of the time.

I sought a professional diagnosis immediately, but my diagnostician determined that I didn't have AS despite much evidence to the contrary including her diagnoses of my Generalized Anxiety Disorder and Obsessive Compulsive Disorder which are, of course, frequent factors of AS. She was apparently out of her league in trying to diagnose my adult AS. She specializes in childhood AS diagnoses, and used a multiphasic test which has never been assessed or approved for AS diagnoses among adults. She ignored my Cambridge test scores, and cherry-picked only those childhood characteristics that fit her GAD and OCD diagnoses.

I have written that I *might* complete a genetic AS test if and when one becomes available. Until then, I am satisfied that the preponderance of evidence supports my conclusion that I have AS. My DSM-5 severity would probably be a Level 1 (mild). Furthermore, there is no medical or legal reason I need a diagnosis, and some reasons to avoid one.

I've also been diagnosed but was certain before that. It is quite a high profile syndrome but I only knew of it in a stereotypical way, after kind of hitting rock I was determined to find out what was 'wrong' with me. I explored lots of personality disorders, and while I have many of the traits, none seemed to quite fit. Then I read about how aspergers is sometimes misdiagnosed as a personality disorder, this was the first time I had ever properly read about aspergers. It described my social difficulties exactly, but I had preconceptions about autistic people being unemotional and really organised, where as I am emotionally chaotic (though rarely expressed) and extremely disorganised, when I started to read about it I realised that the stereotype doesn't apply to everyone, and poor control of emotions and executive disfunction are common. But the thing that convinced me the most was reading about things I do that I have never considered problems, but rather individual quirks that it turns out are common for people with aspergers, I just thought it would be too coincidental that I had these autistic like problems, and these autistic like quirks but not autism. The only area where I wasn't sure was special interests and routines, which I think I have somewhat but not to the intensity normally described.

I think there were a number of reasons it wasn't picked up earlier, I was a teenager before aspergers was commonly diagnosed in the UK. I think my parents have many traits themselves so possibly weren't the best judge of normal, my discomfort with expressing emotion means I went 30 years pretending I didn't have any problems at all.

My experience is very similar to nyxjords.

I was born in 1988 and my country was always far behing other European counties - I believe they started to actively diagnose Asperger children about 2005 when I was already 17 year old.

I remember a few people saying I might have Asperger back then - I even got an assessment because my grandma was sure I do. But I didn't think so. I was attending a private school and just one time in my whole life I felt normal (there was only 17 people in my class and about half of them got some kind of disability, I was pretty normal compared to them) so I ended up using my learned strategies to prove the specialist I am "just a normal teenage girl focused on school, not boyfriends". He couldn't diagnose anything, the only thing he assumed were some sensory integration issues since I said I am not going to visit him anymore because the street behind window is too noisy and I can't focus. I forgot about it soon after.

I was meting a lot of psychologists during my lifetime but the knowledge about Asperger was nearly non-existant. My school psycholog I was meting nearly everyday due to being bullied never mentioned it and even a adult therapist I was attending in 2012 got no idea about Asperger. The only diagnosis I ever got was "She is very smart. She just has to learn to behave in a group" by a children psychiatrist when I was 3 year old (I could count to 100 and describe all colors - with shades like purple, indigo, sensory integration issues...) and unofficial ADHD that my grandma "diagnosed" in me when I was 6 year old (1994) - but she was doubting it herself since the way I focused on my interest was nothing like ADHD. When my favorite cartoon was on TV was turning into "invisible, statue like child". They could talk to me, move me, try to feed me, poke me and I was showing no reaction unless they were doing something that didn't let me see the TV screen.

About a year ago - more or less - I found a article about Asperger on the Internet. "Hmm, it sounds familliar..." - I thought. And it started. It become my obsession (special interest). It ended up grandma was right all the time and I really am like that - and it explains all my life perfectly.

I was afraid of getting diagnosed though. "They don't diagnose adults.", "I dont have money for this, I am unemployed. And even if I had a job I wouldn't spend half of my monthly wage on the diagnosis. This is just too much.", "And no way I am going to go 2h by train and 40 mins by tramway for the assessment meetings".

But one day while passing next to a Autism Research Center (diagnosing children only) I though to myself - "Maybe I ask them if there is a center around that can diagnose adults for free?I got nothing to lose.". So I did. They recommended me an institution in the same city. I went there the same day. It was too late so they told me to come next day. I come there, said "I am looking for someone who can diagnose Asperger in adults" and got signed in for an appointment in 3 weeks. I got sucked into preparations. I wanted to describe everything so there is no doubt either way.

The 3 weeks just passed. the appointment was today. Result? I am diagnosed. The specialist got no doubts. Details here: <click>

So while I was self-diagnosed at first (unless you count the diagnosis of my grandma) I ended up getting a diagnosis quite easily. I wonder if it was not too fast - what could she say after just 1 hour? It is a record, isn't it? But I guess she got her point after reading the 20 pages of my self-description and seeing I got more of those prepared.

I was born waaaaay before anyone knew of AS, but it's quite likely that had anyone known of it, I'd have been diagnosed as a child.

I self-diagnosed after my therapist suggested I might have it (I'm going to her for grief counseling, and it just so happens she has a lot of AS patients), so then I went through the formal diagnosis process, just to satisfy my own curiosity. (And I still haven't told anyone outside of my immediate family.)

Mostly, it has been a relief because of now having an explanation for why I've always been different from (almost) everyone else I know. Turns out, too, that the people throughout my life with whom I have the most in common and with whom I feel the most comfortable are also either on the spectrum, or darned close to it. It helps me to be less frustrated with myself when I can't step up in social situations, too. I used to feel deficient, now I know that my brain is just wired differently, which is oddly comforting.

I didn't speak till I was 5, but I have always been good at mimicry, so my mom (who was a Special Ed teacher,) thought it was just from my communication disability and hyperlexia. Cracks did not appear in my mask until High School, so se thinks that I am just close to the spectrum, with symptoms aggravated by stress, and does not realize that I am always the same, I just don't always have energy to keep a mask up. I've also had autistic friends tell me that I am even more autistic than them.

I had always considered myself as "shy" and when my 5 year old son was diagnosed on the spectrum, I thought harder. Did the AQ, EQ etc online tests and finally went for a formal diagnosis which was confirmed. But reckon 40+ years ago, these things werent really well known, plus reckon my parents "just got on with it" - actually in my particular case, this was no bad thing, but recognise for a lot of other people with more severe conditions times have distinctly changed for the better. Think a lot of my initial self diagnosis was piecing together various remarks people had made down the years and which I'd chosen to brush off until then.

I wasn't diagnosed when I was younger because back in the 60's you had to be severely autistic to get a diagnoses. My mother did have me tested back then. I stumbled across Asperger's while researching the speaking and communication problems I have. It was a major relief to finally have an answer to my problems that doctors weren't able to answer.

With me, we had 2 children diagnosed as AS and one as PDD(nos). What happened is the more I learned the more I saw that every single reason they were citing for diagnosing my kids was something that was present in me as well -- either currently or when I was younger. Anything that I have "grown out of" is really just a case of having taught myself and learned how to act; the original tendencies are all still there.

Also there are/were things that I don't believe could be explained any other way other than AS

I forgot to respond to the "what kind of research" part of your question.

Mostly, I read extensively on the internet, took half a dozen or so of the online assessment tests, bought a couple of books about AS. Every single thing I read (and every single quiz I took) further cemented that I was likely an Aspie, so having it confirmed was a relief in that regard, as well.

I was an absolute maelstrom as a pre-5 year-old child. I didn't speak, I would knock items off shelves, I would scream at the top of my lungs constantly all night. I would vomit frequently. I was diagnosed as "autistic" by at least one clinician, about 1963-1965. I was tested for many conditions, including epilepsy (one procedure made me think that I had brain surgerywhich "cured" my autism). In fact, I went around telling people that "I used to be ret*d." Others psychologists/doctors thought I was mentally challenged. It was thought that I should be institutionalized. Autism carried a poor prognosis then.

I started speaking at the age of 5. Soon afterwards, I "became" Aspergian. I was a "little professor." I didn't discern social cues. I had no idea how not to interrupt a conversation. I had some sensory issues (though mild). I was just an awkward mess. I went to special schools most of my academic life. I did graduate high school on time with a regular diploma. 27 years after graduating high school, I graduated from college Magna cum laude.

Based upon my past, and my present social functioning, I believe I am somewhere on the Spectrum, though on the relatively mild side. I was severely autistic until I acquired speech. Afterwards, my symptoms steadily became milder.

Asperger's was defined in the DSM for the first time in 1994. I was 54 years old. Almost all of the efforts to help were directed to children - there still is almost nothing for adults. A friend sent me here, to WrongPlanet. I recognized all the kindred spirits.

Then I got the section out of the DSM and researched thoroughly for a long time. The upshot: it's Asperger's.

Next: get official written Dx from hospital on their letterhead. I was 57. This I use as a tool to build a life for myself. I had hoped to use it to qualify for programs but I still haven't found any for adults.

I have used my self-Dx and the official Dx as guides to improve my life, to decrease the difficulty, to create an aspie paradise out of my apartment (see book in my signature). I've met a lot of blind alleys but I will never give up.

Well, considering that even now here, in Brazil, A LOT of psychiatrists that i've gone don't know almost nothing about Asperger/ASD diagnostics process or even the right symptoms.
The first time i was taken to a doctor because of a strange behavior i was 4 years old (1997) and the psychologist said that i was just too shy.
I've lived just as a weirdo since then and that was not too much of a problem inside of my family because they are really respectful and learned how to live with my condition. But outside of home things were not so pretty and i ended up changing school 2 times because of problems with bullying.
To sum up, two years ago someone sent me an email with three links to pages talking about the symptoms and behaviors of people with Asperger and i immediately felt that this was my case. At that time i didn't want a diagnosis because i thought that i was crazy and, if i was officially diagnosed, this would mean that i was officially crazy! (So stupid, i know lol)
After some bad events during the middle of last year i decided that i should start to understand all this situation better if i wanted to learn how live in this world (since at that time i started to realize that i would not be able to live in the comfort of my room forever) and that was the first time that i went to a doctor to find out more about all this.

Oh, and i almost forgot: I still don't know who sent me that email lol

Your avatar is really cute.

Currently I am not planning on getting diagnosed. I'm more or less content without getting diagnosed because from what I can tell diagnosis is far from an exact science. They might shrug off a lot of my behavior as a result of severe stuttering and anxiety. I'd rather not have someone tell me I'm not something when they don't know my brain as well as I do.