Failure to diagnose...

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How many of you have gone through most of your lives knowing that you were different but had no clue why?

It was only about a year ago I discovered that I am very likely to be on autistic spectrum. Now twenty-two years old, I have been referred to an assessment and hopefully will get a formal diagnosis very very soon. Only about eighteen months ago however, I had no idea what autism was nor that it was a spectrum of conditions, not just one condition. It was my sister that suggested that I might be autistic. In fact, my sister is very aspie herself and it was when a teacher asked her if she was autistic she was prompted to research the subject. I then told my counsellor and he revealed that he believed that I was an aspie when he first met me, but because I had been through the school system somebody would've picked it up.

Because my condition was failed to be picked up, I had gone through the first twenty years of my life wondering what the hell was wrong with me. Any of you had a similar experience? Is it just general ignorance that people failed to see this, or negligence, or both?

I always knew I was different but didn't know why. I just assumed there was nothing wrong with me and I just had to try harder to be like everyone else. I just didn't know why I was ejected and treated different. I used to say "What is wrong with me?" "I wish I could trade my brain for another brain."

My school just said I had ADD and few other things. My mother knew ADD wasn't the correct diagnoses and kept trying to find what was wrong with me. Sure I had autistic characteristics and they got less as I got older. I'm just surprised she didn't even think I had traits of it despite signs I was showing and the early diagnoses I had.

I was 12 when finally diagnosed. Now that I am 23, it's half and half now. I have gone half of my life without knowing something was wrong and another half knowing what I have.

i have not gotten a AS diagnose yet, but i have been in and out of hospitals for testing ect ever since i was a child, but they were unable to figure it out, and now i am 25. i have Anxiety and depression issues aswel, but there has never been any other official diagnose except these two. they did except ADHD and also "minor brain damage", but the test results diddnt show these things so i am a mystery in many ways.

but now i am older people dont pay me much attention anymore, i still dont function in society and i have come to believe the underlying issue has always been Autism of some from. i have worked a few smaller jobs here and there, but nothing much, probably around 1 year in my 25 year old life if i add all the minor jobs together.

but this has taken me a while as the formal diagnosis criteria listed online ect are very "stereotypical" and so i didnt not feel to comfortable with them, but now that i have read about other people with this issue i have come to realize that i too have these issues.. ive always believed everyone was like me, so i never thought much about these minor things as being "different"..

i think the problem has for me been that i have "freaked" out allot since i have not been understood ect and so i have created additional issues to be able to deal with the world around me, which is a shame as otherwise i could have had a totally different life.

i think most people do not want to spend too much energy on others and so we become stranded in between little or no attention being given to us. also there is in my country atleast a mentality that you are not sick unless you are dying and so people like me who really want to figure out why i dont function are seen as hypochondriacs, which is a shame as thereafter one will not be taken seriously...


please excuse and typos, i am experiencing the flu at the moment:( and i have two exams next week, lets hope i get well in time...

I wonder if there is much difference between "I have some personal traits that I can't explain" and "I have a still much unknown syndrome defined by these traits". If we think a while, what is the big difference between the two things? I think that the only thing that you know that you didn't know before is that there is a name for people with your traits. Little more than that. Or am I wrong?

*Raises hand*

I never considered it until my child's diagnosis. Even then, everything I read on the subject was clinical information, nothing like what I have found here. So, suspecting AS did nothing at the time because it did not really explain why I am so weird. I think I know now.

Im also 22, and have never been diagnosed, but im not claiming to have it either. All I can say for definate is that I have always felt different and wondered why. It really hit me when I was about 11 and an adult friend of the family approached me and voiced her concern that I was so much 'in my own world' at that age, I mean like in terms of appearing to be extremely shy, and she was going to pray that id come out of my shell. I got pretty upset at that because even at that age I knew it was more than that and what she was suggesting would basically mean changing who I was. I remember going out afterwards and seeing the other kids playing with eachother and noticing how all the five year olds running around even seemed to be more advanced 'socially' than I was. I was first promted to research asperger syndrome when people kept asking me if have ever been diagnosed with anything similar to this or ADD. I mentioned aspergers to a friend who had studied it and she said that she wouldnt be the least bit suprised to know I do have it. I have also researched ADD but it doesnt seem to fit. Sensory Integration Dysfunction also rings a few bells when I compare that to how I was as a kid in particular, but I could be reading too much into things. Theres also the unusual fact that I was always in and out of 'special' classes (mostly for help in maths) in primary school even though I was able to read at age two, and 'acceleration'(they were going to move me up a year or two) was considered at age four but abandoned because they thought I would be far too confused by it, and my academic achievements have still been less than average. The one thing about autism/aspergers that doesnt fit is the suggestion that aspies wouldnt have engaged in imaginative play as a kid, I had an extremely active imagination. I still havnt done anything about finding out for sure, I dont know if I really need to unless im definately going to go to university and right now thats not possible for me. I dont want to sound hypochondriac or something either, although I know its just a difference really.

Asperger's syndrome, although recognized as a legitimate disorder by the psychiatric community, was not entered into the DSM-IV until 1994, when you were 8. The DSM (Diagnostics and Statical Manual of pscychiatric disorders) is the standard text used by american clinicians and researchers for the diagnosis of AS (there is an equivalent international manual with a slightly different definition). Before that time one would be diagnosed as PDD-NOS, undiagnosed, or misdiagnosed, likely with schizophrenia, ADHD, or something else that provides a good excuse for medicating "unruly" children.


I was born in 1980, and was in special ED since kindergarten, though they never diagnosed my troubles. I got a former diagnoses 2-3 years ago, while still in my current graduate school program. It is easy to be overlooked, though increasingly unlikely for younger people.

I am a little bit surprised that they missed diagnosing you as you are still young. I usually find that the young aspie types get diagnosed much sooner nowadays, and received earlier intervention. I also find this very irritating along with leaving me envious and empty as they often tend to "gloat" about their successes and what-not.

Interestingly enough about being misdiagnosed with shizophrenia, one doctor asked me if I "heard voices in my head" and referred me to a mental health specialist. The specialist concluded that I had no serious mental disorder.

The reason why I probably never was diagnosed was because the British state school system sucks and my parents didn't want to admit there was anything wrong with me.

I was diagnosed at 42,22 or 23 years isn`t long to go undiagnosed,its only 4 or 5 years of adult life...

I'm 22 too and going for an assessment in 16 days.
At school I was quiet, shy and didn't get the best grades. Teachers were concerned about me. They thought I was sexually abused. Another put me in a remedial class and another gave me a journal to write my thoughts down in.
I heard about Asperger's Syndrome while I was trying to figure out if I have dyslexia. I didn't think much about it then and then when I thought I had similar symptoms two months ago I still didn't think I had it.
Then suddenly it just made sense. I read about it more and more and related to almost everything.
Even if I'm never diagnosed I still know that I have it.

I never really thought I was different. I just accepted the fact that I was shy, not that smart (academically) and hardly had any friends. But this year I actually wanted to be able to talk to people and I got very jealous of those that it came naturally to.

I'm 34 and recently realized that AS is what has been causing my difficulty my whole life. I am currently trying to get my dr. to find a specialist to test me, but I really don't think that she is taking me seriously. She gave me info on bipolar disorder, when I don't have bipolar disorder. What she saw, of my behavior, while in her office all of 10 mins(an appt. that was supposted to be 45 mins, but I found out when i got there that someone misscheduled me)
was extreem anxiety. I told her that I can' t concentrate on things, I have so much on my mind that i can't organize any of it. I was having an anxiety issue with my appt being cut really short, and haveing to hurry and tell her everything in that little time. She said that talking at a fast rate is bipolar. I thought she was under standing me and was going to give me info on an adhd med., but it turns out we where on two different pages(or different books for that matter)

I didn't figure it out until I was 49. I just thought I was wierd, and different from everyone else on Earth. Thought I was damaged, bad, etc. Imagine my surprise to find out I'm not alone, but that these tendencies are permanent. It's a mixed bag.

At least I now know that i am not a defective person. I have a different agenda than the majority of the other people on this earth.

I was diagnosed November 3, 2008 at the age of 50--half a century of watching high expectations of my promise, intelligence, and achievement turn to disappointment and despair, for no reason that ever made any sense until the Dx.

Consider yourself lucky you're going for an assessment at such a young age. Some of us in our 40s, 50s, and older have gone through hell and back not understanding why we failed to meet the expectations for our futures that our parents and teachers had for us. We were intelligent, driven, gifted even, and somehow, we disappointed ourselves over and over. When we finally discovered we had AS, we had the relief of having it all make sense, and the grief of having lived most of a lifetime with self-recrimination and shame.

i have always been different. first being Asian in Oregon. I found that out when i was 9, the other kids let me know. i was adopted by caucasian parents and was looking from the inside out. Now, looking back, it could be more because of the AS i didnt know how to make friends or play with other kids. we moved every 2 years, so that added to the anxieties.

My psychologist thinks I have anxiety or goes on about Early Maladaptive Schemas.