For those who are self diagnosed

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I just have a few questions because I really don't understand the process of self diagnosis.

What made you decide to research AS?

How much research did you do on AS?

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

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

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.

Do others agree with your asssessment?

What's keeping you from getting a formal dx?

I dont mean these rude, I'm just curious.

I don't like to mess with splicing quotes so I just numbered it and will answer it that way.

1. 2 random people online said that it sounded like I might have aspergers.

2. A fairly good amount, not really sure.

3. I am "gifted" and have been diagnosed with add (and at one point misdiagnosed with bipolar) my symptoms did not fit all of those. In some ways I definity fit add, but I had some other issues that didn't make sense with that diagnoses.

4. Don't like touch usually, sometimes issues with noise, forgetful/but have a great long term memory, anxious a lot, get annoyed easily. Had speech issues so I had speech therapy for about 5 years when I was younger. I am spacey, very literal, don't usually get sarcasm. I can interact with people pretty well but it is obvious I am quirky. Not great at showing empathy. Get addicted to stuff easily such as videogames. (if you ask about something I could go into more depth.

5. Marked them both as 5 because I am answering them both here. I thought I had aspergers a year an a half ago and 2 of my friends (who were a few years older than me) convinced me I didn't. About half a year later I convinced myself I had it again through researching some more. My mom thought I should get tested in december even though I had not told her about how I thought I might have it. My mom has a degree in teaching. That along with what I thought makes me 100% sure I have aspergers.

6. insurance

Someone related to me has it for sure = research on it.
How much research = alot.

Later, was told by relevant person that he always assumed I had it.
Thus, some realisations, back-tracking, further research...I present as a classic case.

Others agree with my assessment, yes.
I haven't decided either way on formal diagnosis. I'm just busy.

1. Saw a 2000 Newsweek article on autism, and it had an inset on Asperger's, which I saw for the first time. Their descriptions mostly identified me as if it was opening a key.

2. Did more online research to follow up on this. Many parts remained true except the part of being an early precious talker.

3. Did look at autism earlier, but it seemed the only recognized version was the LFA, which I differentiated from. Also looked ad social phobia, which covered part, but not all my traits.

4. Have a low except i was very slow to start talking.

5. Went over this a lot, but still had some questions. When I just joined WP, some parts were still unresolved, but it appears i have HFA or PDD-NOS

5a. Some family members can see that I have several of the traits.

6. Cost with no insurance, and not knowing if i would get any benefit from a formal DX.

For the record I'm self-diagnosed, but working on getting a formal diagnosis.

What made you decide to research AS?
A few years ago (1993) I had seen the film 'House of Cards' and had instantly recognised something of myself in the main character who they hint at as being autistic, but I had thought of autism as the Rainman stereotype so almost completely discounted the idea that I may be autistic. A few years later I [almost] got a step-sister who had severe autism, I originally looked into autism to try to find ways of making time with her easier and more enjoyable for her and that's when I came across AS via an online support group - it was autism but not in the severe form I had known, it was a form of autism that seemed to fit me exactly.

How much research did you do on AS?
A fair bit of research, but most of my research has been based upon talking to others on the spectrum to see how autism effects people in real life and varying degrees of severity so to better understand it as a condition rather than a bunch of words on a page - if I had stuck purely to books and online I'd not have realised that what I experience are meltdowns, shutdowns, stimming and sensory issues - words on a page don't express how these characteristics behave in people in real life. I think with any condition it's important to see how it effects people, autism especially as there are so many variables and different severities so there are a million combinations in how autism can present itself, more again when you consider different coping strategies people adopt or being raised in different environments/cultures. I needed to get a grasp of autism in this way to get an idea of whether how my 'characteristics' fit with AS.

Did you also research other things that could cause your symptoms?
There isn't really anything that explains the full set of symptoms as far as I know, in my teens I was diagnosed with social anxiety disorder as a result of abuse in childhood, but as an adult that really didn't fit because as a person I'm very confident and loud so the idea of social anxiety didn't fit because it wasn't just anxiety it was a complete lack of ability to learn social skills, and that's even before looking at other AS characteristics I have that aren't explained by social anxiety disorder like sensory problems.

How many of the symptoms do you have? A lot, a few?
A lot, there are no symptoms that I can think of where I don't fit - I express difficulties differently, but they're still all there.

How much do you trust your own dx?
Very much, I'm not a hypochondriac and I would normally be against self-classification for any circumstance outside of the autistic community as it can dilute the meaning of the term or give others the wrong impression of what the term means, however I have no doubt that I am on the spectrum and no problem with calling myself autistic. I think initially people can believe AS is nothing more than social problems, which can easily be explained by social anxiety, however there is not only a whole set of different characteristics within autism but it effects how you function - there's no mistaking that.

Do others agree with your assessment?
Yes, other autistic people I've met in person and online, people who know me, and two teams of mental health professionals - when looking into diagnosis it came to light that when I was sent to therapy by my school in my teens the team of therapists working with me had suspected AS. I left therapy before they could refer me for an assessment, and no one told me that they had suspected AS.

What's keeping you from getting a formal dx?
The NHS - I'm about a 1-2 years into trying to get a formal diagnosis, so far I've been to see the mental health team who believe I do have Asperger's so I was sent to the autism team, however NHS are all bureaucracy so have stopped this going ahead - I believe they've decided it costs too much to allow me to get a diagnosis so are trying to draw-out the process in the hopes I give up. I have to go back to the mental health team to be re-assessed by someone higher-up who would then have to refer me back to the autism team again, fingers crossed that I'm not with the mental health team too long and that assessment goes to plan. I'm not looking forward to talking to people about my problems, I couldn't handle IQ tests and I'm estranged from my family so not sure how it's going to work out. For me a formal diagnosis is just that; a formality.

Last edited by Bloodheart on 15 May 2012, 11:09 pm, edited 3 times in total.

I don't refer to myself as "self-diagnosed" so much as I say "I suspect I may have AS," but semantics aside...

I had known about AS for a while, but I started researching it again in late March or so after hearing about the increase in Autism diagnoses. I tend to be a little bit of a hypochondriac by nature, but I found myself relating to a lot of the AS traits and diagnostic criteria.


I started at Wikipedia. I read up more about it on sites like the Interactive Autism Network, some personal blogs, and this very forum, to name a few. I learned about the DSM-IV and DSM-V diagnostic criteria. I asked a sibling about how I was as a child. I took some online tests, including the Autism Spectrum Quotient (AQ):

http://en.wikipedia.org/wiki/Autism_Spectrum_Quotient

I was a little stunned at how each online test I took suggested that I am either autistic or fall into a category known as the Broader Autistic Phenotype (basically, where you have many autistic traits, but not enough to be diagnosed with an Autism Spectrum Disorder):

http://autism.about.com/od/autismterms/g/phenotype.htm

I have to say, Autism itself has since become something of a special interest of mine.


I did. I was diagnosed with Selective Mutism when I was a child (though some with AS can be selectively mute), and I knew I was an introvert. Those two covered a lot of my personality traits, but AS covers just about everything where I'd ask myself, "why on Earth do I act this way?"


I have quite a few: I'm socially withdrawn, I dislike small talk, I tend not to socially reciprocate, I feel like I'm in my own little world most of the time, It's hard for me to express my feelings and to verbalize my thoughts at times, I am not particularly expressive with my emotions, I have a hard time maintaining eye contact, I have meltdowns and shutdowns, I have special interests, I stim, I'm occasionally faceblind, I sometimes can't tell if someone is being facetious or serious, I have a hard time regulating how loud I speak, I tend to miss cues in conversation, I have a great long-term memory (though my short-term memory is iffy). I was also an early reader, and I fit into the "Little Professor" stereotype as a kid. On the other hand, I seem to be fine with detecting facial expressions, and as far as I'm aware, I don't have serious sensory issues.


I too can be a bit of a hypochondriac. But this is different. AS isn't a disease, for one. I didn't go into this trying to self-diagnose. I didn't get scared about it (though that initial realization was freaky). And this isn't something where, say, I have one symptom and therefore am freaking myself out thinking I'm deathly ill. If you gave me a checklist of AS traits, I could check off a whole lot of them.

I'm confident I fall within the BAP. I seem to fit the diagnostic criteria for AS, though as I said above, I won't say for certain that I have it. I've been debating whether it's worth getting a formal diagnosis.


I've only told a few people; many of them either agree with it outright or at least say that they've noticed quirks about me that AS would seem to explain. But again, I'm not telling people that I outright have AS, but that I may have it.


Part of it is that I don't know if there would be enough benefits to getting a formal diagnosis. Also, I'm really not good on getting stuff done, so...

Last edited by FishStickNick on 16 May 2012, 12:47 am, edited 1 time in total.

1. A coworker who is going to school for psychology asked if I had aspergers. She said I had a lot of aspie traits.
I asked a friend who is an occupational therapist and who used to do behavioral therapy for autistic kids. She pretty much said she thought for years that I was on the spectrum.

2. For the next 4 days I spent literally every spare minute researching AS and realizing all the weird things I did may have a single explanation. That was around 3 months ago and not a single day has passed where I haven't spent at least an hour reading about AS and other disorders.

3. I've read up on a lot of other disorders and AS seems to fit me best.

4. My major symptoms are:
-obsessive interests.
-poor eye contact
-VERY uncomfortable in social situations
-completely suck at small talk (unless it's one of my interests. Then I could talk all day)
-hard to figure out what people are thinking or feeling
-get distracted easily and often (several of my gradeschool teachers in the early '90s were sure I had ADD) unless it's something I'm interested in. In which case I can hyperfocus on it.
-some sensory issues (mainly hypo-sensitive to pain)

That's all I can think of right now

5. I'm pretty much sure I have it. Mainly because everyone I know who has experience with ASD says "Dude, you're totally aspie! lol"
I've taken all the online tests and quizes I could find and I scored in the AS range on all of them.
When ever I read about AS and what other people say about having it, It's as if they were talking about me.

5. Like I said above, two friends are sure I have it. I told two other friends and they are of the opinion that AS is just a fad diagnosis. I also told my mom. I explained why I think I have it After reading up on it a bit, she agreed that I have the symptoms I listed above but she didn't think I had all of them. (I don't think she understands what a spectrum disorder is.)

6. Money. Also, the thought of talking to the psyc. in the interview kinda freaks me out. Lol

Last edited by jetbuilder on 16 May 2012, 9:20 am, edited 1 time in total.

What made you decide to research AS?

My best friend's daughter was diagnosed with Autism -- all through her school years, she paralleled my experiences very closely, and we are otherwise very much a like.

How much research did you do on AS?

I've read everything I can get my hands on and did the online tests (some of which are noted in my sig)

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

I've spent many years exploring theories -- this is the one that covers things most completely.

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

I don't have every symptom on the list, but alot of them

How much do you trust your own dx?

The theory fits the facts.

Also, I have a history of self-diagnosing. Years ago, I figured out that a root cause of my health problems was an under-active thyroid. To make a long story shorter: I convinced the doctor to let me try thyroid meds and they helped a great deal.

Do others agree with your asssessment?

yes

What's keeping you from getting a formal dx?
It's expensive and may well make it hard for me to get medical insurance

Besides that, why bother?
* There are no programs for senior Aspies
* there is no medication that will help -- should I find I need something for one of the symptoms, like insomnia or anxiety, I can get the prescription for that particular symtpom.
* Given the state of "modern" medicine, having an expert agree with me will not make me any more certain, nor will the expert disagreeing with me make me any less certain.

What made you decide to research AS?
It was a long process. I noticed that I was different in Kindergarten. I started having noticable issues in grade school, and required extra help with grammar/reading...I was put into "reading labs". These were classes in lu of what would have been my actual reading time/class. I was taken from the classroom before the regular kids started there work.

I didn't speak very much. Not that I didn't know how or anything. I did not know the rules of when it was appropriate besides the obvious "speak while I'm speaking and you will suffer______" sort of concrete rules.

I didn't have my first friends until middle school...and only a hand full since then.

When I say that I didn't know any social rules growing up...I didn't know hardly ANY. I got by by mimicking others and avoiding punishment. From middle school on I stayed depressed because of feeling lost/out of place all the damn time. This only got worse as I got older and because I didn't know any better, the first person who showed me interest and asked for my hand in marriage I obliged because I thought that was what I was supposed to do. One day I realized that I wasn't in love, so I didn't stay with him (and he was probably not faithful to me anways)...so I ran home to mom & dad only to remarry the next guy who asked less than 2 years later. It wasn't until my late twenties that it FINALLY dawned on me that I was gay and never loved either guy, and the only reason I have for marrying them was because they asked.

Side note: during the first marriage...I had learned (from church and media) that one was allowed to leave the spouse in cases of infidelity, and I felt I had reason to believe that but not proof. It was weak suspicion to say the least, but the suspicion existed so I decided one day that I'd go with that for the reason (otherwise, I'd be pressured into staying with him by my family) and I ran home. The second guy, just up and came out to ME while on the phone while out job hunting one day, so I knew that was another "game changer", so I got out of that one easily too. Too bad I had just had a baby though. It was an accident obviously.

Also, like many here...my resume/CV looks like a buffet of employment with long periods of unemployment mingled in. I also have long periods of being without a vehicle, and sort of preferred it that way. I mean, I don't like having to ask for rides, but getting to avoid the stress of driving is nice. However, I have had a vehicle now for a few years and still do.

I'm sure I'm leaving tons out here...but I'll move on.

How much research did you do on AS?
I have been researching AS since I first heard about in early 2006ish. I didn't decide that it definitely fit until last year or so. I did not come to this dx lightly.

Did you also research other things that could cause your symptoms?
Yes, many many things simply to make sure AS was the best possible fit to my symptoms.

How many of the symptoms do you have? A lot, a few?
A ton...I would say most. Are you wanting a list here?

How much do you trust your own dx?
At this point, a great deal. I'm confident in it.

Do others agree with your asssessment?
The few that know besides my parents, yes. My parents are typical of most conservative fundamental christians (who believe in miracles, demons, and all sorts of hocus pocus), they deny any condition and blame my issues on "the devil" and/or "spirits/minions". Apparently, I just need enough Jesus and I'll be normal.

What's keeping you from getting a formal dx?
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ (no health insurance despite being employed) I'm trying to figure out a way to get a formal dx without hocking everything I own to do so. I'm 33, and some may wonder what the point would be, but the last few years my comorbids have significantly gotten worse to the point that I'm afraid that I'll eventually become a shut-in. I hope not, but if things don't change...

What made you decide to research AS?

A doctor where I work mentioned special interests being a part of AS in a letter about a patient. I looked it up because I wasn't sure what it was. It seemed to describe me.

How much research did you do on AS?

Still researching, it is another obsession

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

I was under a mental health team for psychosis, in retrospect I believe this may have been a meltdown, I was having a hard time with noise and having to change jobs. I was also pretty obsessed with the new world order, freemasonry and chemtrails and would just talk about that all the time to them. I don't believe I have schizophrenia and they weren't sure either as I had too much insight. I looked into schizotypal disorder, it doesnt fit as well as AS.

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

I have or have had most at some point in my life. I dislike eye contact, stim, prefer to spend time alone making music and researching, cannot relate socially to 99% of people, have very few friends, hate communicating with more than one person at a time, blush at the slightest thing, dislike noisy, claustrophobic environments, high-pitched or loud sounds, cannot remember certain faces and keep blanking my next door neighbour, used to get told I walk like "mr soft" bending knees too much and don't use my arms, feel emotionally disconnected from the world, introverted and preoccupied with what feels like a swirling universe in my head.

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 can be a hypochondriac at times but I find I relate very much to others experiences with AS and have most of the traits. I distrust the tendency in society to pathologize everything, but researching and self-identifying with AS has helped me understand myself better

Do others agree with your asssessment?

I haven't discussed with anyone. Many people just cannot fathom me at all.

What's keeping you from getting a formal dx?

I don't like tests and speaking to doctors. I can be suggestible so don't want to end up taking medication I don't need again. From what I've heard it could be expensive. I am working and doing ok generally so there wouldn't be much to gain.

I don't see myself as "self-diagnosed". I just think ASD explains rather well my situation, and for the moment, that is enough.

When I saw it matched my own life experience. It happened more or less by accident. I thought of ASD as something found in pre-school children, actually...


I have read a lot on the Internet (including articles on specialized journals, through my university's databases), some books, listened to online videos, answered tests, probably some other things.


Yes. I have been followed for mood disorders and psychosis, and I have consulted several psychology related self-help fora, so I have been exposed to many diagnoses. For a long time, I thought I had one of many psychotic disorders or schizoid personnality disorder, but I didn't think it really fitted my c


Most.


About 90% confidence.

I don't think it is about the symptoms themselves. I was more convinced by the life experiences of others, and when I could see how they thought. Also, many things I read were almost identical to things I had thought, which I found disturbing.


I haven't told anyone. I don't expect I ever will.


Bureaucracy. I have already started the process, but apparently, it takes two months for a neuropshychologist to talk to a psychiatrist...

Last edited by enrico_dandolo on 16 May 2012, 12:44 am, edited 1 time in total.

What made you decide to research AS? I kept running into it by accident, really. The first time was when someone who was probably Autistic and didn't tell me said my tone reminds him of someone with Asperger's he went on a trip with.

How much research did you do on AS? I read what I can, when I feel like it. I've definitely read beyond the definition/summary, though.

Did you also research other things that could cause your symptoms? Unfortunately so, I've been labelled against my will from childhood.

How many of the symptoms do you have? A lot, a few? I have quite a range of symptoms that wouldn't otherwise be connected - for example - obsessions, light sensitivity, lack of eye contact.

How much do you trust your own dx? The official diagnosis I had was a rush job from people who didn't know me, I trust my own knowledge more, but than I also think the astrological chart for Pisces is a lot more accurate than what my assessment says.

Do others agree with your asssessment? I don't know what the people around me think about it, as they keep contradicting themselves.

What's keeping you from getting a formal dx? Lack of own means, and lack of trust from others who'd be able to help me with it.

Well, I had two separate people suggest to me that I probably had Asperger's Syndrome. I wasn't very sure about it, so I started doing research. My first stop was Wikipedia where it didn't make things all that clear, so I moved onto forums and blogs. There I saw other people who thought the same way I did, both now and growing up. I quickly realized that my friends were right, I probably did have Asperger's Syndrome, or at least I was somewhere on the Autism Spectrum.

Before my friends suggested Asperger's Syndrome, I had looked into the more severe side of Autism, because one of my minor interests is feral children, and often the feral children had been diagnosed with Autism, both before and after being let loose to become feral, and also been compared to people with Autism because of poor social and communication skills. That was my first run in with Autism.

I have several symptoms of varying degrees. I can't make eye contact, I am excellent at mimicry. I actually will mimic other peoples laughs and even movement traits unconsciously. It helps me to fit in more at work and other social situations. Without it I wouldn't laugh or have any inflection in my voice.

I feel pretty comfortable with the diagnosis. Before I always felt alone and an outsider, the weirdo that no one could understand or wanted to talk to. Here I may not always talk, but I never feel alone here. I feel like there are others out there who are like me.

I do not have the money to get officially diagnosed. Although I don't know if I would get a diagnosis anyway. Mainly because one of my backup plans is joining a branch of the military, not my first choice, but if I do choose it, I can't be officially diagnosed. Of course where or not I can get past their screening is another thing all together

OK first of all for me, I start with a quote from the wisest of the wise....... Adam Cartman.

"God is not a dick"

LOL

Pick a level of faith that is appropriate for the trust you need to give yourself in order to feel balanced.


My experience with Asperger so far,

I, also, first heard of the symptom, thru a South Park episode and then saw it again used in the Time Warner write up in their cable guide for some other show.

From there I went to Wiki...waka..whatever.

linked to here and started reading everyones comments and seeming openness.

I seemed to relate to a few off the bat and took a test that, was pointed out to me, may have been designed for someone younger and whom has had less time adapting and trying to "fit in"

The test, therefor is inconclusinve and here I am.

whether or not someone else DX me, isn't a relative aspect of recognizing common interests and the ability to speak in complete sentences, and complete thoughts, that the people here, such as yourself, obviously can do lol

I don't make friends easily but I like the openness I've sensed from this site.

SO I'm here adding my 2 cents for a while.

And reading others comments.

Who knows maybe I can make friends. (Need to practice what I preach)

However, I have been on my own for 15 years without co-dependancy and it is refreshing. I don't even want a pet,
But, two people that know me pretty well, and who I asked the opinion of, also said they did not think they saw the symptom in me. And my sister has been around a child diagnosed Aspie.

But like I said, 15 years on my own, and neither of those people knew me as a child, I was 12 when my sister was born, so I'm not sure what they would say if they had known me then,.

In any event, I don't see Asperger as a bad thing.

Who are we to say that Autism isn't a possible evolution of man and maybe I'm a little more eveolved.

We believe what we want right?


NEXT!

dunno if i count.. 1st was self diagnosis.. went see dr.. then got pro diagnosis written paper..
research cause they told me I got autism.. they is random people I meet.. had no clue what it was.. thought rainman.. iam not that
read stuff.. just big list of stuff i have and all my probs listed.. interested.. dont wanna be autistic tho.. so not sure
most ppl round me think iam aspie.. I think I am.. some think not.. they say im not rainman..

My father was a clinical psychologist, stepfather a psychiatrist, so literature was abundant. This was the late 60's, early 70's. Then there's me, the only kid who spent recess walking in repeated squares around the schoolyard fence, others kids asking "why don't you see your father?" Luckily he was too busy with alcoholism to get me in his crosshairs. Saw a few shrinks but it was a certain era and every era produces its own designer diagnosis. Plus there's just not mentioning certain things. I go on to be a MH counselor & I have access to the info. I was a "para professional." I was a job coach for severely autistic youngsters. "Empathy" wasn't required; a low emotional temperature was a sharper asset. (New agers and liberals burnt out like moths.) Never could remember my own phone number, never could drive a car but I could hold certain jobs well enough, so what do I need a professional for? I was raised by professionals.