Question to those who Self-Diagnose themselves?

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Though I didn't self diagnose, my own diagnosis and collection of co-morbids when totally missed simple because I live in an area where such an awareness of things severely lacks. Extremely few are diagnosed simply because it isn't well known in deprived towns and villages like mine. No one other than my psychologist knew anything differently and was diagnosed recently.

Its very true for anything anywhere outside social norms as well.

Wow, I guess the biggest reasons a lot of you weren't ever diagnosed was due to lack of awareness with doctors.

I mean, I felt it was unfair that I only got diagnosed at 11 and not at a younger age so I could have been helped earlier. My family lived in a small town and the doctors weren't aware of Autism and they labeled my as 'slow' and 'misbehaved', even blaming my parents for my behaviour. I only got diagnosed when we moved and the new family doctor saw what was wrong with me straight away.

I thought that was unfair but looking at a lot of your posts... It makes me feel lucky. I feel bad that a lot of you couldn't get help during childhood and were forced to find your own coping mechanisms. I find it hard to cope in college even with the help of an LSA, I can't even imagine how hard it must have been for a lot of you guys back when you were in school.

Do any of you intend to get an official diagnosis? I know when I was diagnosed it opened a lot of opportunities for me (therapy, extra help, services, events etc) and these kind of things are still available for adults with Autism/Aspergers.

Thanks That's me and one of my dogs, Kody, when he was about... 4-5 weeks old. My mother, who is rubbish at taking pictures, actually took that.

Well your mom did a good job. ^_^

It's hard to say if being diagnosed young would have been best for me. Would I have ended up getting to know the same people? Having the same experiences and friendships? Turning into the person I am now?

Life has had it's share of trails and sadness, including mistakes I've made, but in some aspects I'm happy how things ended up.

Andrejake, your English is perfect!

ASD was the unrecognised and unsuspected elephant in the room until my grandson was diagnosed in early infancy. He is fairly extreme in his spectrum manifestations and we knew something was very different about him from his first weeks. However at that stage, I didn't join any dots...

Then my daughter (very NT though with strong ASD affiliation, not surprising since she grew up in our family) married an engineer, some years ago. I knew that they had some relationship problems in the early years of their marriage; and then one day she rang me up, quite excited, to say that she thought he had Aspergers.

Following her phonecall I went to the library and took out every book they had, including Attwood; I did this because I was interested in in either confirming or rejecting my daughter's suggestion re her husband. Attwood was shocking for me to read. He was describing me!! !! !! !! !! !! And my mother, grandmother, brother, three cousins, son-in-law, my other daughter (I have two, one NT, one ASD) - the invisible elephant in the room turned into a whole herd of them, and they were extremely visible after that. We were four generations of ASD dominance.

I absorbed this alone for quite a long time, and then I joined WP. I still had little elements of doubt: I didn't think I had any stimming behaviours for example (ha ha, that illusion was deconstructed thanks to WP) and I realised that most of my significant relationships had been with ASD men, never diagnosed, due to their generation, which like me, grew up in ignorance, undiagnosed.

I have never sought formal diagnosis and never will. I am very well qualified myself in psychology and some other disciplines; I have quite a scientific and analytical mind, and am wholly comfortable with self-diagnosis. The threads you mention can be very annoying, though I think the comments in them are generally from much younger people who don't yet have my educational level and life experience, and whose confidence in "experts" rather than self-knowledge is therefore understandable.

What I have learned from WP is that I am much moreautistic than I previously thought - all sorts of little things that I did not think were ASD related until I read about them for the first time on WP. Lots of everyday stuff that even Attwood doesn't mention. I am totally at home here. I don't need some expert to charge me a lot of money to tell me what I already know, and in many instances, I am more qualified than them anyway.

Was pointed in the right direction by a couple people.
Researched online, then read "The Complete Guide to Asperger's Syndrome" by Dr. Tony Attwood - that was all I needed to read to know for sure. Read a couple more AS autobiographies that were also helpful to relate my life to.

Nope, won't require an official diagnosis as the only reason to do so is for some sort of social assistance/government aid etc really.. that and since I've figured out how to treat my symptoms I doubt I'd get a diagnosis if I pursued one. See the link in my sig for my story.

I grew up in the 1980s. Back then, autism = "classic" autism (what would be called LFA now), and that was it. No one had ever heard of Asperger's syndrome.

Grade school was pretty awful: I was "shy" (way more than that, as I'm sure most of you understand), felt ill nearly every morning, was bullied all the time, didn't really understand what the other kids were doing most of the time...something really wasn't right. My mom saw that something was "different" about me, and without having a name for it (she later told me that she "suspected autism"--really), she helped me learn how to cope socially. Much of that consisted of explaining, calmly and logically, that it was very true that many of the "rules" made no sense, but that if I ever wanted to escape school, I had to learn how to "play along" and pretend. Knowing that how I felt was somewhat justified did help. She made home a "safe haven", and was even the room mom in 2nd grade, which helped a lot also.

I was most comfortable playing alone, at home, in worlds I created with my toys. I neither needed, nor wanted, any company. My mom said that, from a very young age, she would leave me playing in my room while she did chores in the rest of the house, then come back an hour later to find that I hadn't moved.

Special interests? I became very "interested" in certain TV shows while growing up, to the point where I'd save articles about them from TV GUIDE. For a while, I saved clippings of the listings of my favorite episodes, painstakingly taping them to notebook paper sheets. This carried over into my later interest in phobias (which began with my first Psych course), writing down every character I saw who was portrayed as having a particular fear of something, and noting frequencies (claustrophobia was at the top, btw, with acrophobia a close second ).

By middle and high school I had learned how to adjust and "play along", more or less, but I still felt like an outsider. I would watch the other students and wonder "why do they behave like that?" I made a few friends--mainly guys (I am female)--who seemed to "get" me. It was like having a group of brothers, and they made high school more tolerable. By then, most other people just ignored me, which was fine.

I lived at home while in college--saved money, and I got along with my parents, so that worked out fine. I started out studying Chemistry, switched to Psychobiology part of the way through. I read about autism in my Psych courses, and often wondered "what must that be like?" Psychology (and Biology) made sense to me: I was able to "see" what shaped behavior (brain structures, neurotransmitters)--it made human behavior more approachable.

I heard about WrongPlanet on a news report (probably the year this site was founded), but didn't really think about it too much for a few more years, when I was in grad school in a new town. I was starting to make more friends and actually began caring about how I "appeared" to others. I remembered this website and looked it up, then started reading others' posts. At the same time, I was in a Criminology program, which included two Psychology electives. Everything I read and studied REALLY sounded like me. The move had, apparently, "reawakened" some of my old insecurities, which felt more salient than ever, and I just knew that there was still something going on here.

I found the AQ on Wired.com and scored well above the cutoff threshold. I found a longer assessment as well (can't remember which one now) and scored in the middle, but still over the AS cutoff. That, along with the fact that every description of AS seemed to fit me, led me to conclude that I am indeed an Aspie. When I mentioned it to two of my professors, they said they'd known all along. These were two Criminology professors, mind you, not Psychology. They both had family members on the spectrum.

I am now 35 and, as I said, female. Getting an "official" diagnosis at my age would be difficult, if not impossible. I know myself well enough to know that it is true. I have learned further adaptation skills, and hold two jobs: online instructor at my university and part-time cashier at Walmart. An "official" diagnosis would probably do more harm than good, and it's not really necessary--for now, I do not need assistance or services. If that changes...well, I'll cross that bridge when I come to it.

So--there it is. There are some people on this forum who do not think that self-diagnosis is valid, and I understand those objections. AS is fairly well-known now, and it is *possible* that some people may read a few of the symptoms and just decide they have it, without really doing the research. However, I believe that most, if not all, self-diagnosed people on this forum HAVE done the research, and know themselves well enough to be sure.

Sorry about the lengthiness, but I felt it was important to show the full progression. I hope this answers your questions.

I've always been aware of being an outsider. Around 5 years ago I recognised some noteworthy behaviour in my 6 year old son:

- He had developed into the journey planner of our family, looking up and printing out train schedules, and then insisting we only travel on the trains on his itinerary, and having a meltdown if we tried to go on any "unauthorised" train
- A strong dislike of any encounters with strangers, in particular a dislike of going to restaurants
- Minimal eye contact

At the time I only had the vaguest idea of ASD, and started researching the topic because of a suspicion that my son might be on the spectrum. I quickly discovered that many of the symptoms, and in particular many first hand reports from people on the spectrum sounded very familiar, not only with respect to my son, but also with respect to myself. I also noticed that ASD would explain many of the strange behaviours of my brother in law. I scored high on all the self assessment tests that I took, and within a short amount of time I had read a range of books on the topic, both from so-called professionals and from people on the spectrum. In particular the latter convinced me that I'm on the spectrum.

When I told my brother that I've got strong autistic traits, he was only mildly surprised, and then said "well that actually explains quite a lot". In hindsight I now also notice that my mother repeatedly commented that I seemed to be caught up in my own world/mind, but I never knew what she was referring to, and even less what she expected me to "be" instead.

I've now been working in the software industry for 25 years, and find it interesting that Temple Grandin has repeatedly stated that based on her observations half of Silicon Valley seems to be somewhere on the spectrum, yet avoids a diagnosis like the plague. Whilst that statement is somewhat sensationalistic, in my experience 5 to 10% of the people in the software industry could well be on the spectrum.

A little anecdote to illustrate the point:

I got sucked into the world of professional software product development by accident, i.e. I needed a source of income while studying mathematics. My first software job started a day after a very short interview by the CEO of a software company. My first two months at "work" involved ploughing through a stack of self learning courses to become familiar with a particular software platform. I thought nothing of spending the entire two months alone in a separate room with a computer terminal and a stack of manuals. During these two months, on most days I would have said "hello" to the receptionist in the morning, and then would not have talked to anyone else. It felt perfectly natural to me.

At the time I was hopelessly naive commercially. After the two months of autodidactic "induction", I was given a set of specifications, and I again disappeared into my own little world, to implement a software solution for a particular customer. Once I month or so I traveled to the customer, to install the software, and to walk the two key users through the new functionality. It took me about two years to realise that it's probably a bit strange that my hourly rate was about 1/10 of the rate at which my services got hired out to customers.

My colleagues at the time all went through a similar process of induction. In hindsight the process seems like a quite effective filter for selecting (and exploiting) those with strong autistic traits.

I consider myself very lucky. Unconsciously I have constructed an ASD friendly support environment for myself and my family. As a child I always felt different, had at most one friend at a time, and was labelled everything from shy to hyper-sensitive, nerdy, and weird.

To a certain extent I can emulate NT behaviour, but doing so is not only depressing, it also consumes a huge amount of mental energy. I don't see what I could possibly gain from an "official" diagnosis. I am glad to be able to offer an ASD friendly home environment to my son, without unnecessarily forcing him through the "normal" socialisation process.

1. Anyone with AS that's not symptomatic enough to be mis-diagnosed with some other disorder (at least enough to reach 18) easily slips under the radar here in the USA. Until 1994, AS wasn't even accepted as a diagnosis over here. If your parents didn't want to accept there was anything wrong with you (and didn't want you "labeled" for life), it was easier to say you were a loner, "peculiar," eccentric, etc. to explain away your "issues."

Warehouse 13 had a scene when Agent Jinx asked why a person collected doorknobs. The woman replied, "OCD, but we didn't have drugs back then, so we just let him do it and called it a 'hobby.'"

2. At 40, I had yet another embarrassing social mishap, and I was about in tears over it. 40 years old and I still couldn't master basic human interactions. I knew I wasn't like others, but I presumed everyone thought everyone else was "odd" just as I did. Of late, I was wondering if it was something only I experienced. I spelled out the situation, and someone suggested it may be AS. Up to then, nobody ever indicated that there was something wrong with me. When my parents had concerns, they took me to a doctor who found "nothing" wrong (based on pre-AS diagnosis criteria). I had a genius IQ and advanced communication skills. No obvious "mental" defects. Since I could manage in one-on-one polite society, he saw nothing obvious wrong with my social skills. There was no observation or assessment of me in a group setting.

Once I heard of AS, I started researching it, and I was stunned to realize I had every one of the symptoms to one degree or another. It read as a script for my entire tormented life. Then I found this place.

3. I was relieved to learn of AS. I know understood that there was something "wrong" with me that had a name, and that it wasn't my "fault" that I was the way I was (in so much that I somehow was choosing to be this way). However, there are still anger issues....feeling cheated out of life...yet again...by something beyond my control.

4. I want to get a formal Dx someday. Because a Dx is a double-edged sword, I want to hold off until I feel the benefit(s) outweigh the potential risk(s) a Dx would present in my life. Pretty much, if I get a Dx it will be to protect me in my job situation or to qualify for disability. Otherwise, it won't do me much good to walk around with the official label.

I was always told I was "too clever" to have issues, I was not diagnosed officially with dyslexia till my last year at school. This diagnosis served me well for a while and made me feel less bad about my exam results, where I had lost interest in school.

But going to uni made me realize apart from the dyslexia I was still "odd", I found group work pretty much impossible.

In an argument my mum said about autism, I looked it up and found Aspergers and the "symptoms" and this just explained me. The being obsessed about things and hand flapping thing were the main things I remember from the list.

I then tried various on line tests and they all came back with the same result, so I'm fairly sure I'm correct.

I have not requested proper testing as this requires money, time off work and my work already know I'm odd and dyslexic and accept that I'm "unique" but if I ever get some spare cash and time I would like to be properly tested

I'm a selfie.
I knew I had issues but could never find any one type of disorder that matched the symptoms. Eventually I gave up on it and attributed most of my peculiarities to being raised by two idiots. Well, raised is too strong of a word. More like grew up being generally provided for by my parents. Raised implies more than an obligatory and cursory interested in child development. Okay, I'll step down off of the soapbox now.

I did get sent by request of my school to see a psychiatrist when I was 9 then again at 15. The first time my old man told me in no uncertain terms that there had better not be anything wrong with me before I went in to see the shrink. With that threat over my head I answered the battery of questions with answers I thought I was supposed to give which did no good at all. The guy seemed to be just going through the motions, anyway. The second time at 15 I was too streetwise and untrusting of ?shrinks? to do get much out of those few sessions, and I still remembered and heeded the ?there?d better not be anything wrong with you? threat from the old man. To my parents I was written off as just being purposely difficult and they were ill equipped to handle any real problem, anyway.
What saved me from more than the standard amount of bullying that all kids get in school was that I looked normal (however you want to interpret that) and I would and did fight back when push came to shove. Had it not been for those few saving graces my life in school would have been hellish.

Until October of '06 I'd never heard of Asperger's Syndrome and if I did it went past me. I was when I was just surfing through some Wikipedia articles one night and one of them was on Thomas "Stonewall" Jackson. It was theorized that Jackson had AS and from other things I've read about him since and a tour of his home in Lexington during his VMI years I believed it. I followed the Asperger?s Syndrome link to the article on AS. I had never read anything that described me better than the criteria in that article (the article has changed a little since Oct ?06). I literal scooted back from my computer and my mouth dropped open. To me it was the revelation of all revelations. I did more online research in the next several days and weeks found Wrong Planet and started reading stories and accounts in this forum.

I found several reports of misdiagnosis. I have since considered going for a formal diagnosis but decided that I probably wouldn't gain much from it. In my case I don?t believe I have a severe enough case of AS to where I require meds or counselling, or at least not yet. I get by albeit not without some difficulty. The social awkwardness being the biggest stumbling block but I?ve overcome a considerable amount of that by adjusting. Just being relatively quiet and smiling when appropriate when around people helps considerably but it is not everything. I've learned to limit my exposure to other people to lessen the chances of having to deal with too many awkward situations that I?d likely screw up by the numbers. Special interest have taken way too much time and money and I still struggle with that but in a way I don?t care so much because it is my special interest.

The value of official diagnosis is really an individual case-by-case question and depends on to what degree each individual is afflicted with AS and what kind of environments they live in.

Last edited by Raptor on 11 Jul 2014, 8:13 am, edited 1 time in total.

My son was diagnosed as a result of a process that began at school. I did not believe the diagnosis because I knew nothing about autism and I had to educate myself. At some point, reading the books, the recognition became impossible to avoid.

People saw that there was something going on, but I was born in 1965 and the people who were talking about my lack of social skills and eye contact at school in the 1970s had never heard of Aspergers. Autism was nonverbal kids who sat rocking and beating their heads against the wall. I had very high test scores and my the processing disorder that caused some trouble with parts of my school experience were largely masked by my strengths in other areas.

I read a lot online. I read Tony Attwood's book.


It was both difficult to accept and a huge relief. It was profoundly shocking. I felt a sudden affinity for Neo in the red pill/blue pill scene in the Matrix. My world was turned upside down. At the same time I felt that I could release a secret and set down a burden that I had been carrying for years. And then I had to recognize the shocking truth that others knew and accepted this about me for years when I had no awareness of it at all.

Once the thought occurred to me, it became totally compelling. I could not stop thinking about it In a way I wanted to reject it, but it seemed to fit so well and explain so much. I had to know. I could not afford any of the diagnostic options that I found when I began to investigate and I was too old to participate in the research programs that would yield a free diagnosis. I finally found a lower cost option through GRASP in New York.

Being the father of a son with an AS/ASD diagnosis made it impossible to ignore. I kept reading material to help understand what they were saying about him, and finding a sort of mirror to my life in that material. I had to know what a trained professional thought.

Dang. I'm so THERE.

I know my parents meant well, and I understand that no parent really WANTS to deal with extra problems in child rearing, but I got similar "warnings" when I was sent to a shrink.

So, you play the part and take the blame rather than use the opportunity to get HELP just to make others happy (or at least keep yourself from being even more miserable).

My mom recognised that I was different from early on, especially after I hit kindergarten and wasn't interacting normally with the other children. She didn't suspect AS until I was nine though, because she attributed my developmental delays to my premature birth. She didn't get me tested when I was a kid because she couldn't afford it back then, but when I was seventeen, she informed me of her suspicions, which I rejected until about a year later, when I started doing my own research. I finally got access to affordable diagnostic services this year, where my suspicions were confirmed, but I was afraid for a while that I may never be diagnosed because of how expensive it is.

/\ Yep; go along and get along.......