For those who are self diagnosed

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It had been suggested to me by several people. My Mum had suspected AS from when I was a child, it had been suggested at school, then again when I was 16. Much more recently I met an internet friend who was a teacher who worked with adults and had taught people with Aspergers. He spent a few hours with me and said 'Aspergers'. It was a few months after that that I really started to research.


I did the online quizzes, read articles online, lurked about on here and read books.


Not at the same time but in the past I had researched other things such as depression (which I do have) and PTSD which my GP suggested I might have but I knew as soon as I read about it that it wasn't me.



A lot. Sensory issues, stimming, need for routine, difficulty with change, special interests, difficulty with socialising, I can't read people's facial expressions, I have issues with being touched unexpectedly, I have terrible eye contact, prone to meltdowns and so on.



I trust it because it fits so perfectly. I also trust it because I spent a lot of time researching and because I didn't want to have AS. I know I wasn't trying to shoe-horn myself into a diagnosis that didn't fit.


When I told my Mum what I thought she immediately agreed and it turned out that she had done her own research and had read many of the same books as I have. Looking back on my childhood it becomes even clearer that AS is the diagnosis that fit. When I told my boyfriend that I thought I might know what was 'wrong' with me, he guessed AS. He'd known there was something very different about me when we first met but I think maybe he started to think about it more recently, and he met two people with AS on his course at University.



I still don't know if I will get a formal diagnosis or not. On the one hand, even though I am sure of my diagnosis I feel a little as if I don't have the right to say I have AS without a formal diagnosis. Although I have needed a lot of support - emotional, financial and practical over the years I have received that from my family and boyfriend. I can mostly hold down a job. I'm not sure what other support I would need. In the next few years I would like to start a family and I am terrified that if I had an AS diagnosis as well as a history of depression that Social Services might take my children away.

I'm still quite conflicted about whether to get a diagnosis or not. I only self-diagnosed a matter of months ago and so I think I will take a bit more time to think it over.

I knew that I was different for years (say age 10 or 12) - then for years was self-diagnosed, now, for less than a year more formally diagnosed.

Not only do I think that self-diagnoses is good idea it needs to be pushed out to more people. We need to improve on the tools to do this to make them more reliable and easier to use. Formal diagnosis is only done on people who have enough problems that they turn up at a psychiatrist's office, and even then some of them will be misdiagnosed because psychiatrist has no education in the area. The present method of finding Asperger's misses everyone that is not having enough problems to drive them to a specialist. H***, I made it to age 60 before being diagnosed - and then only because my son had problems with depression.

To have anything like a reliable count of how many people there are on the spectrum we must develop reliable self tests that we can get large random blocks of people to take.

I suspect that there are many people out there who have lived relative normal lives who are on the spectrum. Finding these people may give us more incites into methods of adapting to the world around us. After all for 60 years I lived among the NTs out there and was counted as NT, so I know that this is happening.

I agree 100%. I would also add that not everyone has the fortune of: One, an attentive parent(s) that aren't also bat-shit crazy (not saying I am in that, I just kid with myself)...or grew up with health insurance (I did not). Two, grow up to get a job (that you kept long enough) to get health insurance.

I mean, I'd love to know how I'm going to see, what appears to be, the only autism/AS specialist in my area that does NOT offer a sliding scale fee without insurance when I only work part time, and that job doesn't even offer insurance to full-time employees.

What made you decide to research AS?

Well I was around 21 and was actually looking up personality disorders at the time and I ran across AS thought it looked like a possibility. Then my sister told me she was convinced I had AS. She was all worried about me being offended but I just said that might explain some things and that it was perfectly fine she brought it up. Apparently though my mom was not so accepting of the idea and even told my sister she shouldn't tell me that because then I would think I'm 'different.'....well I kinda already knew that but my moms weird sometimes. So anyways then I looked more into AS to see if it seemed to describe me at all.

How much research did you do on AS?

As much internet research as I could, and I was seeing a therapist so I brought it up to him and he found more information for me to read and also though it was very possible I had it......he just was not licensed to give a full diagnoses.

Did you also research other things that could cause your symptoms?

Yeah.

How many of the symptoms do you have? A lot, a few?

Enough to fit in the diagnoses category in the DSM....and also plenty of symptoms commonly described but not necessarily listed in the little DSM category. A few of the more obvious ones are difficulties with social interaction, lack of eye contact and of course the sensory issues. As a child I remember being more intolerant to change.....but that's not so much an issue now since I don't even really have much structure in my life so I don't really have many routines to get attached to.


How much do you trust your own dx? I ask this because about 15 years ago I was a huge hypochondriac. I was afraid I had so many different things and then I'd read about them and think I had the symptoms. I got over that, luckily, because it's scary. I'd be afraid to trust my own dx of something like AS.

I trust it for the most part, the only other things that seemed to fit were various personality disorders but as a rule those don't start in childhood so that wouldn't explain all the unusual childhood issues........like why people automatically found me weird or odd. But I guess I can't be 100% sure.

Do others agree with your asssessment?

Yeah, though I imagine not everyone would agree.

What's keeping you from getting a formal dx?

Lack of funds, but there may be resources to help with an offcial dx for people without income.......so I'm still looking into that.

What made you decide to research AS?
My psychologist at the time said I should do some neurological examination and also mentioned AS. So I looked it up on Google.

How much research did you do on AS?
Lots, I've read books and articles in both my native language and English, I've researched online a lot and found plenty of facts and tests to take.

Did you also research other things that could cause your symptoms?
Yes, I've researched almost everything, it's such a relief when you realise that there are an explanation for everything in your life that have been hell.

How many of the symptoms do you have? A lot, a few?
A lot.

How much do you trust your own dx?
Some days I'm 10% sure, other days I doubt myself terribly.

Do others agree with your asssessment?
No one at first, now I've talked a bit more with my mum and she believes I have at least symptoms of AS. I haven't told anyone else.

What's keeping you from getting a formal dx?
At this moment, only time. I'm on a waiting list to get a diagnosis and I'm on for August.

Don't remember .... I remember being fascinated about autism, the small pieces I had heard about quite severly disabled people back when there was no internet at my hand to do research (libraries where I live probably also had nothing at that time, they have very little nowadays). But I don't remember the beginning or first motivation when I finally had the information source. It might have had something to do with Daniel Tammet.. or maybe not. It was probably more about the fascination than searching a diagnosis for myself.


Not an enourmous amount, few hours at first, certainly some more on following days. It took time like weeks to process the information, gather gradually more and decide that it probably describes me. I have seen some people here are sceptical about wikipedia, but I think the overview I got from there was helpful, it tied together all the other pieces from other places that I otherwise might not have trusted one by one.


I can't say I have an easily describable set of symptoms. I never made a list of them or searched for diagnosis for one or few certain symtoms. It is more like two blurry things that seem similar but far from identical - my personality and the information about AS. Also there are things that you notice after the possibility of them has been pointed out to you - that's why doctors ask questions after you have already told them about all symptoms that disturb you.


I have most of (>=90%) the symptoms listed specifically concerning females (http://www.help4aspergers.com/pb/wp_a58 ... d4f6a.html). Significally lesser amount of general (emphazis on males) symptoms found here and there. The descisive thing for myself was (before or aside from the females symptoms list) that AS explains so much of all the trouble I have had in my life, all things that I didn't understand why I can't do (shyness could explain some, but I'm not shy, there is something different going on).


Enouch Enouch to become to much better terms with myself, not trying to change myself so desperately any more. I'm not planning to find another diagnosis.


I have only talked to people who do not know much about this topic. Generally they seem to disagree, though some admit, that there is something about my eye contact. Actually I managed to work on myself before this self-diagnosis so that I can pull off acting quite normal most of the time and it has bacome a habit. Sadly I have not happened to ask someone who would have known me 6-10 years ago when my aspieness probably showed most clearly. My parents are totally neutral about it.


I would have nothing to use it for. Well maybe support me in arguing with the people who want to disagree, but that's too low motivation to go through the hassle to get a diagnosis and waste the time of doctors who should instead help people who need help.

1)What made you decide to research AS?

2)How much research did you do on AS?

3)Did you also research other things that could cause your symptoms?

4)How many of the symptoms do you have? A lot, a few?

5)How much do you trust your own dx? I ask this because about 15 years ago I was a huge hypochondriac. I was afraid I had so many different things and then I'd read about them and think I had the symptoms. I got over that, luckily, because it's scary. I'd be afraid to trust my own dx of something like AS.

6)Do others agree with your asssessment?

7)What's keeping you from getting a formal dx?

1) I started researching Asperger's Syndrome when I was on Yahoo Answers and I asked a few questions about some disabilities and odd quirks that I had and most people pointed to Asperger's Syndrome. I didn't believe it at first because my ex boyfriend's brother had Asperger's and a few of his friends. I didn't think I was anything like them so I just ignored it for the time being. I guess I was also kind of in denial. In the next few years a lot happened. My grandma died and I ended up moving to Alberta, after a couple of years with living in Alberta I moved back to Ontario because of my bad anxiety and hard time keeping down jobs. I knew that there was something wrong with me but I couldn't quite put a finger to it and then I remembered the Asperger's Syndrome so I did lots of extensive research and concluded that I was 99% sure that I had it.

2) I did lots of extensive research on Asperger's Syndrome. I think I went through all of last summer and then some studying about it. I studied it through many different websites, through books, movies and online quizzes. Everything I studied suggested that I had Asperger's Syndrome although very high functioning. I didn't think that you could be this high functioning and have it until I researched some more things and looked at You Tube and saw for myself.

3) I researched other things like depression, social anxiety disorder, dyspraxia, dyscalculia and the difference between high functioning autism and Asperger's Syndrome. I discovered that you could have other mental disorders along with Asperger's Syndrome. I was already diagnosed with social anxiety disorder, depression, dyspraxia, dyscalculia and auditory processing disorder.

4) I have a few of the symptoms of Asperger's. I don't have a lot of the sensory issues except for sounds and I'm a little bit sensitive to light. I have really poor fine motor skills. I don't know how to interact with people in a lot of social situations. I have the flat affect. I have obsessive interests. I like having a lot of alone time. I have a hard time showing my emotions, regulating my emotions and not speaking in a monotone voice. I hate having my routine changed and I love schedule and organization. I stim, especially when I'm reading for some reason but I hide it in front of other people. I can read people's faces alright but sometimes I say the wrong thing, I usually have to think really hard before I speak and try to put myself in the other person's shoes. I can stay focused on something that interests me for a long time. I'm perfectly happy not talking to anybody and a daze out of it sometimes and get lost in my thoughts and this can happy anytime at any place.

5) I trust my own diagnosis because I did a TON of research on Asperger's Syndrome in the past year, met some people who had a lot of similar quirks as me and I've been having problems at school my whole life, they just never put a finger on it and I'm guessing because Asperger's didn't really come out until the mid 90's and even when it did it was way more common for boys to get diagnosed than girls.

6) When I first told people that I might have Asperger's Syndrome they were like, what? no you don't, until I explained some of the symptoms and traits and then they were like wow maybe you do. I even told my mum and showed her some people on You Tube who were high functioning and she was like hmm maybe you do, you should try and get diagnosed.

7) Right now, my psychiatrist has been on extended leave since last October and she isn't back yet. That's basically what's keeping me from getting a professional diagnosis. I'm afraid that she wont diagnose me without sending me to a psychologist and I can't afford a psychologist. I had a temporary psychiatrist before and I tried getting diagnosed and then he said it would just be a label anyway but then he told me to bring in my school records but I ended up getting transferred to this psychiatrist. I guess we'll see what happens when she gets back soon, well supposedly anyway. Extended leave for almost one year, wow.

What made you decide to research AS?

After I found out my mother had been diagnosed with bipolar I became very interested in psychology. I spent a lot of time reading the DSM and ICD. At the same time I became very good friends with someone who has AS, and also possibly Borderline personality disorder. When they explained AS to me I thought, 'but that's normal, isn't it?'. I hadn't been well socialised before that point. I had been enrolled in seven different schools, but my attendance was never better than 50%, so I didn't get a lot of contact with my peers. The only people I really spoke to who were around my age(ish), were my cousins. My younger female cousin has ADHD, the predominately hyperactive and impulsive type, which wasn't diagnosed until last year (in fact my older brother showed a lot of the same symptoms when he was younger, although he has found a particular focus in the type of work that he does, so when he's working he's very good at it). My younger male cousin has dyslexia and speech delays. So my childhood view of 'normal' doesn't exactly line up with the actual view of 'normal'.

I really started to look at it, thinking that I may have it, when my partner, and several youth workers at a youth group I go to asked and/or suggested to me that I may have it.

How much research did you do on AS?
I did a lot research on AS, much more when I thought that I may have it. I've read a lot of books on the subject, and looked at the DSM and ICD descriptions of it.

Did you also research other things that could cause your symptoms?
Yes. I was socially isolated from my peers as a child, so did research into children who are home-schooled, and how the integrate with society once they're at college/in the work place. I also suffered quite significant neglect, so I've attempted to research the social effects of that, and have read a lot of first person accounts of neglect. I was abused as a child in multiple ways, so I've considered psychological trauma and PSTD/C-PSTD as possible causes for my symptoms. I've researched into other developmental delays, and concluded that I probably have a few of those as well. Although I have no intellectual impairments, in fact I am highly gifted. Which I've also considered as a cause of my symptoms. I still consider this to be the most likely alternative to AS, although I don't really think it's the cause of my problems. I've also considered Schizotypal personality disorder, but I don't fit that criteria well enough, I'm certainly not socially withdrawn, just very socially unaware. I wish very much to develop and maintain relationships, I just lack the skills and intuition to do so.

How many of the symptoms do you have? A lot, a few?

I experience 1 - although my problem with eye-contact is that I cannot stop making it in casual social situations, I 'stare' without blinking or moving my gaze, I don't make eye contact with doctors, or interviewers at all - 2, and 4.



I experience 1 and 3.



Yes, most definitely.



Only just.



I cannot say about this one. My cognitive development wasn't significantly delayed, but my development of self-help skills was, and curiosity about the environment. My adaptive behaviour was very good though. It's a 'mixed bag'. This is the only thing that makes me think that I don't have Aspergers, although it is not entirely clear what I do have if this is the case.



Criteria is definitely not met.

How much do you trust your own dx?
Some days I trust it a lot more than others. I don't generally trust it when I'm alone, and sometimes I think I'm doing fine socially, although then I'm informed that what I just said was not appropriate, peoples feelings were hurt, and I'm just plain mean and arrogant. Then I think I trust my self-diagnosis more, because I don't mean to rude, my intentions are not mean, and I don't think I am arrogant. I actually have quite poor self-esteem.

Do others agree with your asssessment?
Yes. The ones who know what Aspergers is and know me well agree. The ones who have never heard of it don't, but I think their opinion is less valid.

What's keeping you from getting a formal dx?
Time, money, organisation.

Just saw the psychiatrist today about my depression, then the talk went to me self-diagnosed ASD. She then went through some quicker questions of traits to see if they applied to me. She then said I do have autism (no degree given).

Not sure how good this is as no long battery of tests were given.

How did you bring about the topic of autism?

I spent all of my school years wondering why I didn't fit in. I was diagnosed as dyslexic in grade school but as I grew up I realized that a good chunk of dyslexic symptoms didn't fit me and didn't explain the symptoms I did have. When my nephew was born (early 90s), he was diagnosed with it (and his brother a few years later). So that started me looking into it and it all fit. Now my younger sister is a child psychologist and my niece is getting doctorate in child psych specializing in autism and they've both confirmed my suspicions. Since it's never been a huge problem for me, I've never pursued any sort of treatment or further investigation.

>What made you decide to research AS?

A suggestion from a work colleague.

>How much research did you do on AS?

I've read around a dozen actual books, several online courses, 20-30 academic papers, half a dozen audiobooks and in all likelihood several thousand pages of blogs, websites, papers and forums.

>Did you also research other things that could cause your symptoms?

Yes, I've evaluated differential diagnosis including depression, adhd, attachment disorder, anxiety, hypochondria, ocd, various pdds and nothing.

>How many of the symptoms do you have? A lot, a few?

A lot.

>How much do you trust your own dx?

90%

>What's keeping you from getting a formal dx?

I'm not entirely sure that where I am right now, that I would either receive or benefit from a formal dx. I'm better off than most typical aspies in that I am married and employed. Neither are particularly easy and I am in a continually high anxiety state. If my marriage or employment ceased I could be in pretty big trouble. The question for myself now, is will a diagnosis help me maintain my employment and marriage. If so then persuing a diagnosis is worthwhile.

My self-diagnosis is kept to myself at this stage.

Jason.

She was inquiring about other factors contributing to my depression as she was suggesting that i apply for SSI. Then i told her that i had symptoms of autism/Asperbers but could tot afford to do the testing involved to get an official diagnosis. She then looked up some criteria and asked me those questions.

Was talking to a professional who suggested I might be autistic to some degree, I said no, her colleague mentioned AS, which I didn't comment on then she brought up AS again, by which stage I had done enough research to see where they were coming from and understand what AS is.


HEAPS, and still doing so now. About 20/hr week at first.


I read really widely at first, AS fitted, nothing else did.


A lot but wont go into it here and some of the things that are common but not part of the dx such as dietary problems, gait issues and sensory issues.


I dont really think of it as a dx, I am just looking for resources to help me understand myself and work with myself better. I can relate to experiences of others on WP in a way I cant relate to the experiences of others IRL and have found the community helpful, I have also found other autism resources very helpful. In terms of helping me help myself, AS has been helpful. Whether or not I would actually be dx'ed as such I think is irrelevent.


Professionals either agree (though it was them who brought it up in the first place) or dont know enough to agree or disagree, those on WP I have talked to more via PM agree, the three others I have told IRL were not suprised.


I dont believe that the benefits outweigh the cost. I am working with professionals to understand and deal with the specific problems, I currently have accomodations for sensory and processing issues (am working with a neuropsychologist to improve), and hope that in time, now that I am starting to understand myself better I will be able to deal with problems well enough to not need any support/accomodation etc - in which case I think a dx will hurt me more than help me.

I had a panic attack, and Googled it to find out what had happened to me.


Well... I am "very likely an Aspie" so I left no stone unturned. I read a couple books, and an article a few years ago in the NYTimes touched me. And I took a bunch of online psych tests, and they slowly pushed me towards Asperger's. My scores fall in the range of Asperger's on all of the tests presented here. Reading posts here at WP helped me a lot too.


Of course.


Plenty... although I have outgrown some traits. Like I don't stim. I stopped that when I was 12. When I was growing up there was no Asperger's. I was just a problem child. I didn't fit in. I lacked intimacy. My father, an officer in the Air Force thought that I lacked discipline. So he yelled at me, commanded me, about how to stand and look. Also, I was a big reader, and learned how to get along through books. For example, I got into "external considering" in the early '60s. I got good grades. I spent almost all of the '60s in college.


100% To my way of looking at things psychologists and psychiatrists are not much different than religious healers. They don't have any cures to offer. Psychiatrists give pills... but they don't cure, they make you "feel better." Or, they help you "cope." They are making up their profession as they go along... Just look at their new definitions for problems they will tackle.


Why would you be afraid? It's not like "they" can do anything, and once "they" get their hands on you, if you have money or insurance, "they" will not let you go if you present with any problem that they can put a name on. And if they can give you drugs... they will, and then you are really hooked, because then it is all about you and how are you are feeling.


No one in my world knows anything about Asperger's. To the people in my world I am just an aloof and boring old man.


Because there is nothing that a formal diagnosis could do for me. Because I know that if I did show up in some "doctor's" office seeking a diagnosis, that their first question would be, "Why do you think you have Asperger's?"

Last edited by tall-p on 16 May 2012, 8:52 pm, edited 1 time in total.

I did research for AS kind of by accident since I was curious to know if I had ADHD and then somehow started reading about AS and started to realize it really sounded like my life. I have had some testing done, but not a formal evaluation and I am pretty positive I have NLD and possibly AS. I have had tests related to Neuropsychology that validate that I most likely have NLD.