Undiagnosed aspies- how did you come to the conclusion?

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I am not sure if I have asperger's syndrome or not, but I've noticed that many people here say they have it and are undiagnosed. I am still trying to figure myself out, and I would like to know others' reasons for diagnosing themselves, as a way of comparison

So my question is this:

What is it that makes you sure you have AS, even without a professional diagnosis?

I became interested after seeing someone else asked what Asperger’s was about and their reply being eerily familiar. So much so that when I showed their reply to someone who knows me well, they thought that I had written it. Things that I had never before associated with being ‘strange’ at all were listed as criteria. Like being touched, inability to see in sunlight, etc. Things no dr had ever asked me about so I never deemed important to a proper diagnosis about what was ‘wrong’ with me. Instead I received six different diagnoses throughout my lifetime and my mother was displeased with each one knowing that it didn’t fit.
I fit nearly every listed criteria for ASD, bearing in mind that I have consulted multiple texts, not merely the DSM-IV, which is rather vague and doesn’t point out several things common in autists such as sensitivities and lack of coordination. I have taken all four of the Baron-Cohen tests and received scores in the AS/HFA range. My family has spoken to a family friend who is qualified to assess for disorders for the school system and was given the opinion that I have more than a few traits of ASD. When I actually manage to get some insurance I will be finding a knowledgeable dr to pursue a diagnosis, now knowing that I need to point out some specifics rather than shrug and look out the window and get depression pinned on me again. I will be taking the family friend with me when I go to speak up for me, since I tend to shut down under stress.
While the idea of self-diagnosis would often seem ridiculous, in the realm of autism, the only way to diagnose someone with autism is to have both knowledge of autism and knowledge of the individual, as long as you are actively seeking to gain the knowledge and not merely making a self-proclamation.
As for the question how do you know for sure without a diagnosis from a dr? I was told I was Bi-Polar when I suffer from neither extreme depressions nor manias. So sometimes even with a diagnosis you can’t always be sure.
While Asperger’s does seem like it’s the current trend of psychology, you should bear in mind that along with the children being diagnosed, there are also a great many adults who have always known there was something off in their life that was not quite the depression or the Schizoid personality disorder they were diagnosed with, if they ever received any diagnoses at all, who are coming into the knowledge of ASD. A self-diagnosis is often the key, in the case of the adult who’s parent is no longer by their side to speak up for them and provide their observations, to a proper professional diagnosis.
I am a long-winded kind of girl. Sorry about that.

What is it that makes you sure you have AS, even without a professional diagnosis?

I was diagnosed as gifted and presumably ADHD when I learned about Asperger's Syndrome. After seeking information through various media, I realized that the characteristics of AS described me. Some time later, I took some tests online (empathy, fake smile, AQ quotient) and all scores were average AS scores. So I listed the characteristics matching AS and not matching AS, and I asked parents of teenagers with AS on messageboards. All replied I "sounded like [their] kid[s]". A few weeks ago, I sent this list to Tony Atwood by e-mail and in his reply, he wrote that he thought I had AS. This is why I think I have AS. I will meet a professional in autumn to be sure.

Are they available online? Can you provice an url? Thanks!

http://growe.homeip.net/BaronCohen/MaleFemale.asp
Links to all four tests are on this page. ^_^

Thanks, flamingjune. I already took first three tests somewhere else on the net (with aspie-like results), but the fourth one (with eyes) was new to me. Unfortunately, similarly as for the 'fake smile' test, I succeeded beyond dreams: 31 of 36 correct! Hmm... I don't know what to think about it. Maybe this aspie thing is only in my head. Maybe I have just found a convenient excuse for my rudeness! That's why I am so reluctant in self-diagnosing myself. But if not AS, then what? Anyone know of other medical reasons for shyness, inability to maintain eye contact, being a misfit that offends everyone, feeling different and having repetitive mannerisms (hand flapping etc.)?
[I apologize, this is a little off-topic.]

Maybe it's just easier for you to look at a picture knowing that the subject isn't judging you? Would you have done that well with a live person?

Probably so, if I were looking at that person. I will have an opportunity to meet a lot of people next month, so I will try to analyze what is my problem with eye contact, its extent, and whether it would be easy or difficult to force myself to properly maintain it. But this superhuman ability to read facial expressions amazes me completely...

This is how I feel, as well, Magic. Though with me it is less "rudeness" and more being withdrawn and distanced. I have a difficult time in social situations, though I'm not entirely sure what my problem with them is. I also have very strong interests for certain periods of time (I'm never without one, they tend to rotate on a basis of 1-2 years). I have sensitivities to sound and smell, but they don't seem to be as bothersome as some of the sensitivites others on this forum have written about. I don't do any repetitive movements (that I've noticed, anyway), and I'm not interested in math or patterns in the way that many others here seem to be. I'm more of an art/English person.

I scored a 29 on the eye test, though I often found myself determining the answers through a process of elimination. I found myself grouping the emotions into a few different categories:
1. Positive
2. Negative
3. Introspective
4. Other
I also weighed the amount of expression shown on the face against the amount of emotion suggested by a word (for example, I knew that a fairly blank face would most likely not mean anger).

As for the other tests, I got 33 on the Autism Quotient test, 19 on the Empathy Test, and 31 on the Systemizing test.

What does this all mean...?

It never occured to me that I should maintain eye contact with people. I figured since there was nothing wrong with my hearing that I didn't need to be staring at them the whole time they talked. Now that it's been pointed out I realize it's difficult.
I don't know if you should abnegate the possibility however. It's a spectrum and Asperger's isn't the only syndrome on it. Nor I am sure that everyone on it has all symptoms at all times. At the very least it might be a good pointer to a more precise diagnosis.

I just thought I'd add this on here:
"The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. "
http://info.med.yale.edu/chldstdy/autism/pddnos.html for more info.

Ah, if there were some competition in "being withdrawn", I would have good chances of getting a medal, I guess. Always a neutrino (weakly interacting particle). But this doesn't bother me as much as being considered rude, while I try to be nice. I got very disillusioned with people in general, and then I found this aspie community. It is a godsend. I was never able to interact with people this much. (Well, I'm spending too much time on this site, for sure, to the detriment of other activities, including sleep.)


I have a hypersensitivity to touch, strong enough that I avoided hugging and kissing as a child, which saddened my mother. I am also sensitive to loud or high-pitched sounds (some cause me pain), to changing light (as a teenager I was feeling sick after visiting movie theaters, now I'm only dizzy), and to hot temperature in my mouth (can't drink anything hot). I don't have any noticeable sensory overloads, if you don't count the fact that unexpected stimuli often make me jump or shake and scream, but only momentarily. I do have major overloads when I am frightened, which sometimes knock me unconscious, and make people worry to the point of calling an ambulance, but they happen very rarely. (Despite efforts, they were never medically diagnosed.) As a child I was quiet, but I often had meltdowns (crying) and outbursts (or even rages).


This point is actually the major one for me, and one that is "not in my head". If there were a competition in stimming, I would likely win in in four categories: most frequent, most intense, most varied and most autistic. I stim at least 50% of the waking time, always either rocking or turning on chair, fidgeting, shaking legs, pacing, etc. When I am alone I will start flapping hands, walking on toes, jumping up and down (and, believe me, this is only a small part of the catalog!). This was much more conspicuous in early childhood, before I learned to block it in presence of people, because of ridicule. I wonder why my parents never investigated these movements, which were very visible, obviously weird and as if taken directly from the book on autism. (By the way, my childhood was a nightmare, I was bullied constantly.)


Guilty as charged! I am a computer programmer, patterns are my life. I was fascinated by numbers since kindergarten. I can do mental arithmetic reasonably fast.

In childhood I had big problems with many easy everyday things, to the point that my mother had a saying that I must have one area of the brain grown out of proportions, and the rest squeezed and ret*d. I also had some OCD-like rituals, though not too many. I enjoyed talikng at people, boring them to death with long monologues on my favorite subjects. When I was approximately 18 I have learned about autism by watching a movie about an autistic kid. My mother joked afterwards that I was autistic, while I had somewhat more serious thoughts, but dismissed them in the end.

I did the eye test rather quickly, selecting choices that felt right (result: 31). I did other tests several times over last two months:
Autism Quotient: 38-43
Empathy Test: 12-14
Systemizing Test: 66 (consistently)


Exactly, that's my question.

Last edited by magic on 22 Jul 2004, 6:22 pm, edited 3 times in total.

Thanks for the link. The funny thing is that, despite being so good at reading facial expressions, I pass DSM-IV criteria for AS, even twice.

I took me almost a month of research to come to my conclusion.

On the AQ spectrum test I scored a 38 out of 50 with the guide saying that most aspies score at least 35 with the norm being 16.

On the PDD test I scored 116 which says I have a "moderate PDD"

On Tony Attwoods test I averaged 4.5 and was able to check off many of the ancillary questions in part two of his test.

On the Support4hope website there's a page that gives 67 characteristics of people with aspergers. I was able to answer "yes" to 55 of those when I asked myself "Is this ME?"

And I've read through countless other pages on the net made by those with aspergers, and finding all kinds of relations and connections between what they've wrote, and what I've experienced personally.

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Plus I've known internally to myself since 1983 that I was somehow "different" from everyone else

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I scored well within the aspie range of scores for the AQ test and all the Baron-Cohen tests.

I suffer from all the symptoms to do with social disabilities.

I hate people touching me, and will reflexively retaliate if they do so without permission.

Loud music and bright lights exhaust me, though not to the point of unconsciousness.

I find it comforting to hit myself on the head.

I am told that I am obsessive even though I don't think I am.

I also have this list http://home.twcny.rr.com/bluesonix/aspietraits.htm which is a ton more in depth than the DSM-IV. It's not my list, I found it elsewhere, but I found it helpful. I printed out several copies which I gave to my family members. They marked off traits they saw in me and it's all in my folder nice and neat for when I get some insurance and get to go to the dr. :{