Question to those who Self-Diagnose themselves?

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Okay, to answer:

I personally have had hints over the years that I was autistic. The first time it seriously crossed my mind was in the mid-90s. The next time was when some friends were bringing their kids around, and their youngest was a nonverbal autistic boy who responded to me like he did to no one else.

The next time was after reading ballastexistenz from end to beginning. At that point I was pretty much convinced, but it sort of slipped away.

Finally I had a big mental health breakdown in 2010 and started exploring why I had so much trouble, and came back to autism. I was diagnosed four months later (April 2011, IIRC).

I didn't make it to adulthood without anyone noticing. My first grade teacher told my mother that I probably had a learning disability, a family friend had told my mother that I was autistic, and there were apparently several similar instances that were dismissed because my mother let pride get in the way of making sure I had the help and accommodations I needed.

I always thought that I might be autistic, but until a few years ago I just didn't know it was actually possible. I thought autism basically meant Kanner's autism, not that I had ever heard of that but I mean that was the stereotype that I had in mind. I always thought I had some kind of problem with my brain that was like autism, but had to be less severe than that. I never heard of Asperger's until a few years ago when I heard it mentioned on an episode of House MD. That was when I started doing research online and taking tests and of course found my way to this forum. It blew my mind to come here because so much of what people here write about sounds exactly like me.

I am not absolutely certain that I am autistic, but I am certain that I have a ton of autistic traits and symptoms that have held me back in life. And whatever I have definitely runs in my family. I think it is possible that I have some other kind of developmental disorder, that is very similar to autism and for all intents and purposes might as well be considered to be autism. So I have basically classed myself as having PDD-NOS, or atypical autism.

I wouldn't say that no one noticed when I was growing up, but people just didn't know what they were seeing in me. I grew up in a rural community in the 80s/90s and no one had much awareness of autism, much less of AS or HFA. I was gifted and very quiet and well-behaved as a child so I didn't have any academic or behavioral problems. For all appearances I just cried a lot and never ate anything at school. I was thought of as shy and smart and sensitive and then as I got older people thought I might be depressed or have an eating disorder. And my dad was abusive so when people found out about that they just assumed that family problems were at the root of any trouble I was having.

But more than anything else people were just hung up on how "smart" I was, and if I didn't live up to their expectations they just thought I wasn't trying hard enough. People tend to equate low intelligence with disability, and high intelligence with not having any neurological disability.



Theoretically I'd like to have a diagnosis, but I think it would be too much hassle and might be very draining to go through the process. I rarely go to doctors as it is, because I don't find much use in it. I find that most of them are incompetent and uninformed, even when it comes to very simple and straightforward health issues...and of course autism is far from being simple and straightforward to diagnose. And I don't know that having a diagnosis would offer me anything, other than simply having a professional stamp of approval to satisfy people who don't believe it is possible to self-diagnose accurately.

I diagnosed myself with ADHD when I was 17, and was professionally diagnosed a short time later, but it was something of a let down. I still had to argue for the most basic of accommodations in college (this was around 96-7) and it never helped me at all in a job. I never found access to any services that could help me. I just don't see what having a formal diagnosis of autism would have to offer me.

Well, I read a book about a girl with Asperger's and I realized that she was just like me. I took AQ tests and such, and then I came to the conclusion that I have Asperger's. My mom doesn't think I have it, but I don't think that she knows that Asperger's is different in girls than it is in boys (I'm a girl). My therapist originally thought I had it but now she isn't sure. I'm okay with being self-diagnosed, but I'd like to get a professional diagnosis.

I was diagnosed as a child, but no body told me. I self diagnosed as an adult before finding out about my secret (and I guess embarrassing, because why else hide it? ) childhood diagnosis.

I diagnosed myself because I knew that I was different from everyone else. Mainly because of my interests and the way that I interacted or lack thereof. My parents left me to my own devices from ever since I can remember. I don't even think they noticed. Maybe they did but didn't care. I don't know.
Unfortunately, because of my years of mind numbing solitude and deep, chasm of a depression, I can no longer remember what it is like to actually be happy and carefree. My greatest fear is to end up on the streets again. It was never finding a girlfriend until a girl tricked me into believing that she loved me then took what little money I had from my low payong job and tried to get me arrested by telling the police that I abused her.
So here I am, a 23 year old man with no friends, uncaring parents and a mind that that makes me believe that everyone is going to hurt me. I

Huh, how is Aspergers/Autism different in girls than boys? I'm female too and I've never noticed a difference between my autism and my friends autism (who is male). The only difference is that he is very high functioning (and thus more independent) whilst I'm in the middle of low functioning and high functioning.

I also went to a small private school that only allowed children who are diagnosed with autism/Aspergers to enrol and I never noticed a big difference between the females and males.

I suspected that I had it and so brought it up to my psychologist. She just said that she would agree with me. She had known me for several years at that point so was familiar with all my oddities.

Coda: take a look at this:

http://help4aspergers.com/pb/wp_a58d4f6 ... d4f6a.html (click on the tables to enlarge)

Great golly, each and every one of those points describes me!

AS wasn't that known where I grew up in 80's. If children like me were not severe enough, they were considered "disturbed" or just depressed. I had serious problems with my behaviour (uncontrollable, violent meltdowns), tics and other weird movements (most probably stimming). The kindergarten staff thought I should get help, so I was taken to a child psychologist and a psychiatrist, who both thought there might be a neurological problem that should be examined further. My mom said no, because she couldn't face the fact that there was something wrong with me.

I continued to have problems all my childhood: difficulties interacting with peers and keeping friends, getting bullied at school and in hobbies, many kind of irrational fears, etc. I remember seeing a documentary on TV about Asperger's and reading a book about it, when I was in my early teens. I thought it sounded familiar. I guess I was over 20 years though, when I finally realized this had to be it. A little bit later my brother was diagnosed.



Well, I've just been reading books, online articles and especially people's own experiences on different sites. I've met some people, who have been diagnosed with AS. It hasn't been difficult to accept that I most probably have AS or at least strong AS traits. I think it would be a big relief, if I was officially diagnosed some day in the future. In that case I could be more tolerant and understanding to my poor social performance and other difficulties I have.



I would really like to get a diagnosis, even if it's something else than AS. When I was younger I asked twice, if I could get evaluated by a neuropsychiatrist. I guess the reason they would no let me get the evaluation was that I was already diagnosed with a personality disorder. I haven't tried to get evaluated since, and I probably won't have courage to do it in the near future either. One reason is that I'm really afraid I'll not get taken seriously this time either, and another reason is that I'm afraid a diagnosis would mean I cannot work in the field I'm currently studying (although I'm quite sure I'll not be able to get and keep a job anyway).

Holy crap. That first table described me so well. They all sounded EXACTLY like my personality traits. The one that stuck out the most was the one were it said you may identify yourself as half female/half male. I do identify myself as in between and dress in male clothes. That was... Very strange to say the least.

I started off with a self-diagnosis. I had realized there was something off with me compared to everyone else probably in high school and remember coming to the conclusion that I was actually ret*d and no one had the decency to tell me. I had initially done some research on the internet and came across Asperger's syndrome after seeing it mentioned on an episode of House, but didn't really think that it applied to me. I came back to it a few years later when I was in college and realized it did make a lot of sense and started reading some books on it and scored well into the Autism range on several online tests, leading me to self-diagnose. I then told my parents about it because I was so happy to understand why I was so different from everyone else (it's funny how this seems to be the only condition that people seem to be happy about having...).

As for why it wasn't noticed when I was young, it's probably because I am biologically female and started school in the early 90s, when Asperger's was just barely becoming a thing. I actually was evaluated by a school psychologist when I was 5 because my first grade teacher was certain there was something off about me, but the psychologist just concluded that I was gifted, extremely shy, and had motor skill difficulties. Also, my parents never picked up on it because I was an extremely well-behaved child (almost to the point where I think it should have set off some red flags).

I eventually did get an Autism diagnosis because I wanted to know for sure and wanted to make sure that there wasn't something else wrong with me. It's funny, I was actually content with having Autism self-diagnosis, but when I received the official diagnosis it weirded me out for a couple of months because it meant that there really was something different about me. I have since come to embrace it, though.

Hi Coda,
First of all, I must say your mum did an incredible job on that photograph you use for your avatar. I think it's a really beautiful photo.

I had no idea that I was on the Spectrum until two and a half years ago. I am in my late forties so when I was growing up there was no such thing as Autism Spectrum and Asperger's was really completely unheard of. It was not until I was in college that Autism really started to become known more publicly when the movie Rainman came out and when Sylevester Stallone's second son Seargeoh was diagnosed at age 6. Wow, count all the S's there! So I and and no one else would have ever guessed in a million years that I was on the Austism Spectrum.

I am very high functioning and a female so it would have made it particularly difficult for anyone to have picked up on the signs unless they knew exactly how to look and back then no one really knew how to look that closely. It's funny because mom has sent me a lot of old pictures of myself from when I was little and most of them have the telltale Aspie stare.

Up until the age of around ten I was a pretty normal kid but I had some differences. One thing I remember very clearly was that when I was eight or nine, I went to this school, I lived in the the American Southwest then, my dad's job moved us allover the world and the US growing up, and I remember how at recess when all the other kids were playing, I never played with the other kids. I would climb to the top of the monkey bars and sit on the highest bar and literally stare mesmerized at the colors of the desert mountain until the bell rang to go back in. I had one friend, the little girl who lived next door and we would play together a lot. But I remember being in a girl scout troop and whenever I was with the group of girl scouts, I never really quite knew how to act with them. I had always thought that it was because I was not brought up in a typical American household, my parents were not born and raised in America, so I always thought that I had cultural issues. And I was also a global child rather than one born and raised in one area. But later on I realized that my issues with never quite feeling completely comfortable with groups of girls was probably more because of my Aspie traits rather than anything else. I always did well with other little girls when we played one on one but with groups I always felt like I was some kind of outsider looking in trying to figure out what they were talking about and never understanding and never being invited in.

I have a really sad and vivid memory of being at a girl scout pizza party at one of the girl's house, I think it was her birthday, and I was having trouble eating my slice of Pizza. It was so big I could not really figure out how to pick it up and eat it. I must have been eight or so then. Well the girl's mom came over to me and cut it into pieces for me which was nice but as she did so she said really loudly in front of all the other girls, "You really need to learn how to do things." I was so embarrassed. But I really felt that way. I always felt like all of the other girls knew and understood things that I was absolutely clueless about.

This kind of experience was typical of how I felt around other kids all through high school and even college. I never quite fit in. I always felt tolerated but never fully accepted or integrated or really welcomed. In college and high school a lot of people respected me because I was a very good student and I was very well behaved and I was very active in sports but I was never one of the "in crowd". I was well groomed and clean but I always dressed casually for comfort. I never wore makeup or dressed in fashion and I never understood why anyone would. I just wore jeans and tshirts and as long as they were clean fit well and the colors matched I could have cared less about how stylish they might have been. It's like I had no concept of that sort of thing and no interest either. I also felt very masculine in many ways. I always thought that was because I was close to my brother but maybe it was more than that. But I have felt that feeling of feeling half male. I used to feel it a lot when I was a kid. I also always felt and knew that I was extremely child like in many ways and emotionally much much younger than my peers. And even as an adult I always felt that way. I process a lot of things like a very young child even though I am not mentally ret*d. I do believe that in many ways I am emotionally ret*d. I have always been told that I am very intelligent and I have taken free online IQ tests which have all placed me in the gifted category. I don't know how accurate they really are though but sometimes my processing can be like that of a 5 year old. I also have strict routines and ways of doing things and even though they are barely noticeable to people who don't know me well, if they are disturbed it becomes very difficult for me. I also stim and meltdown and shut down and I believe I have done that all my life. I also have major sensitivities to sounds, lights, textures, and touches and I always have. And I get sensory and socially overloaded pretty easily. I can also be very dyslexic and sometimes I have trouble speaking. And I also have usually strong childlike attachments to very specific people but not to others.

I spent a lot of time in isolation as well because I always felt that no one in my family or anywhere else understood me at all except my cat. I also developed Misophonia at age ten and that along with all the other sensory input issues I had made it very difficult for me to be around people a lot. And I also always felt like it was difficult for me to talk to people because a lot of the stuff they talked about felt stupid and pointless to me.

When I was little my special interest was dogs and I would spend hours a day looking at my dog breeds sticker book and reading about dogs and learning about them and wishing I had one and pretending I had one. I am surprised that my parents did not get fed up with hearing me read articles to them about Doberman Pinschers and German Shepherds all day long. Those were my two favorite breeds. And I am really surprised that they never questioned anything since I would read them the same article over and over again.

But at ten I also started developing a lot of depression and that lasted the rest of my life. By the time I got to college my sensory issues really started to get stronger. I think it is because one of the colleges I attended, I went to three, not all at once but I transferred twice, was in the city. Driving through the busy city every day to go to school took its toll on me. And I lived with my parents and that was not helping. It got to the point where the noises had become too much to bear and I could not take it any more. I was having meltdowns and shutdowns all the time. I even gave myself a concussion banging my head on a glass wall at school once during a meltdown. I ended up dropping out of school five classes shy of graduating with honors. But I had reached a point where I just could not continue. I wish I had gotten my degree but I don't think I could have done it.

But anyway, years later, two and a half years ago, I found out that I was on the Spectrum. The way I found out was actually pretty amazing. As you probably guessed from my screen name, I love to ski. Well there is a little hill, it's a ski resort but it's tiny so we call it a little hill, near my house and that is where I ski. I own my own ski gear but after skiing I had this habit of going into the ski rental room because it has a lot of space, and setting up my gear and then I would spend 45 minutes to an hour with rags and cuticle pushers wiping my skis and boots and picking the snow and ice out of my ski bindings. Well no one does this expect maybe very high expert level anal retentive ski racers and they usually have a team to do it for them. Well it just so happens that one of the managers of ski rentals also has a day job. His regular job is that he is a guidance counselor for Autistic high school students in the school district so he deals with Autistic kids all day every day.

So as I was going in there to clean my skis three to four days a week for about an hour at a time, he spent two ski seasons, the equivalent of 8 months, getting to know me. He said that he knew from the very first moment I walked in the door that I was on the Spectrum. He said it was that obvious. But rather than tell me right away, he spent those two seasons watching me interact with others, watching me meticulously clean my gear in the exact same way every time, and he befriended me and got to know me personally. He also consulted with his Autism counselor and teacher colleagues at school about me. Then when he finally told me I decided to research it myself.

At that time I had no idea about what Asperger's was and my knowledge of Autism was basically what I had seen on Rainman and what I had read about Seargeoh Stallone. So I spent the next 18 months doing research. It was during that time that I found WP and joined. When I joined WP it was the first time in my entire life, over 4 decades, that I had ever found anyone at all who understood everything about me. It was so amazing. And not only did they understand my Aspie traits and teach me about them but they understood my Misophonia as well. It was as if I had finally found a place I belonged. I had always felt like a bit of an odd outsider on this planet among regular humans but now I felt like I had hundreds of other people who knew exactly what I thought, felt and went through ever day and who could not only relate but who could teach me about it also.

I also took every single Aspie online quiz that I could find as well as any quiz that could be related to Autism in any way. And each and every quiz I took put me in the Aspie range. Then I read Tony Attwood's book, The Complete Guide To Asperger's Syndrome and recognized many many things about myself there. I also looked at blogs and websites and several female Aspie trait descriptions and found that they fit me completely. I examined the Diagnostic Criteria of the DSM5 and I found that I fit into enough of the categories to make it very clear that I was am on the Spectrum. I don't meet every single thing listed but I do have the a few more than the required amount. And I have them in a way that they truly have and continue to impair my ability to function in normal day to day life. It was such an eye opener to see that the reasons I could not keep a single job in 26 years were all Aspie related. Every single job I have ever had except one were lost because of an Aspie related issue.

Then I contacted a psychiatrist who has known me since I was born and asked her to give me an opinion. She is retired so she can't do it officially. But even in talking to me she remembered some things about me that also show traits. Because we moved a lot she spent very little actual time with me when I was a child so I am not surprised that she did not pick up on my traits. And like for many Aspie girls, many of them did not show up strongly until I was prepubescent. But we are working together now to put together an unofficial diagnosis for me.

So I guess I would not say that I really diagnosed myself. I did not find my Asperger's, it was shown to me when my ski rentals friend pulled me aside and told me. All I did afterwards was to learn about it and in that process I started to understand myself so much. This was very liberating and I continue to learn about and understand myself as an Aspergian more and more everyday. It was so wonderful to finally have a reason for my issues and my quirks. I was no longer just a weirdo but now I was someone who belonged somewhere and had a place even if it was only on WP.

Will I seek an official diagnosis? I actually am trying to. It is very difficult once you are a certain age to do that and it's not always worth it especially in the United States. In the US the cost can be really prohibitive, it can cost in the thousands and my insurance will not pay for any of it. I know, I have checked. Also, once you are over 18 in the US, there are no benefits at all for Autism Spectrum. There may be small private organizations that may be willing to throw you a bone but all of the resources in this country are aimed towards helping children. So for someone to pay thousands of dollars for an official diagnosis and then find out that there are no real resources, that can be a bit rough. And having an official diagnosis can sometimes hurt you in some ways as well. Now some people have managed to get one for hundreds rather than thousands and some for less than $200.00 but in my area there is no such luck. But I am still looking into it.

The reason I am looking into it is that I have been accepted into Special Olympics as an athlete. Autism Spectrum is eligible no matter how high functioning you are. And as long as your doctor signs your application that is all they need. Well my GP refused to sign it without an official diagnosis and since I don't have thousands of dollars for one right now, I took the application to a doctor whom I had had before the GP I have now. He signed it without even a second thought because he knew me. But if anything were to happen to him I would like to have an official diagnosis so that any doctor would sign that form. You have to renew your status with Special Olympics every three years. So you have to get the physical and the doctor has to sign it. I absolutely love being a Special Olympics athlete and I want to be able to continue doing that my whole life. So to absolutely ensure that I can I would want an official diagnosis. I have talked to all of the SO leaders in my area and they are all aware of the difficulty in obtaining an adult diagnosis for Autism and they are all aware of the cost so they don't mind that I don't have one. But if anyone were to make a stink about it, I would not want anyone to ever say that I could not participate in Special Olympics. So that would be the reason for me. And also if real benefits ever do become available for people who get a diagnosis as adults I would like to have the option to be eligible for them. Life can be very challenging sometimes and sometimes you just need a little help so having to right to get help would be nice if it were to ever become available. I have never been able to live completely independently. Before I was married my parents supported me and now my husband does. But without them I don't know that I would be able to. I have tried many times over the span of decades but I have never succeeded. I am not one who seeks free handouts because I am too lazy or spoiled to try to get by. I am a very hard worker with an excellent work ethic and a strong sense of justice and of trying to do what is right. But I also know from years of experience that I am one of those people who needs help and I can't be ashamed to admit that. So if help ever became available I would like to be able to get it if and when I need it.

Last edited by skibum on 12 Jul 2014, 4:27 pm, edited 1 time in total.

Claradoon, Coda: those charts described me to a "T" also.

Do you think they can still help us now?

Claradoon: in some ways, they do still help--I will still look them over and "remind" myself why I am the way I am if I'm starting to feel "less than"--there is a reason, I'm not just being lazy/stupid/clueless/whatever.

Skibum: your experiences sound similar to mine in some ways. What you said about sitting at the top of the jungle gym is like what I used to do at my public playground. It had a hollowed-out red barrel built into the climbing equipment, and I would spend a good part of my time there just sitting in the barrel, watching people and daydreaming. I imagined I was a squirrel sitting in a hollow tree.

Girl Scouts: I never even made it to joining, but I know what the "outsider" thing feels like (I was always like that at birthday parties...just awkward and out of place. If you've ever seen STAR TREK: THE NEXT GENERATION, Barclay's comments about "winding up alone, in the corner, trying to look comfortable examining a potted plant" in the episode "Hollow Pursuits" really resonated with me--he's been my favorite TREK character since I first saw that episode.

The "cutting pizza" incident: I've had similar things happen to me...and every time, I wondered "what am I missing here?"

As I wrote in my post, two of my graduate professors recognized AS in me too, but they only said so after I told them I'd figured it out. Feeling "childlike" in my processing...well, in some things. I know I'm not like "everyone else" my age, but from what I've seen of some people, close-up, I kind of glad I'm not.

To all of you: if you ever want to talk about anything, for any reason, please PM me. WP has been a great place, and still is.