Long story shortened: I read a list of symptoms associated with HFA/AS and found an alarming number that corresponded with my personal demons. Talked it over today with my doctor, who agrees that I’m a likely fit.
Fixation on narrow topics? Check.
Early literacy? Check.
Advanced vocabulary at early age? Check
Inability to read non-verbal cues? Check.
Physical clumsiness? Double check.
Mental shutdown upon overstimulation? Check.
The list goes on. And on. And the handicaps more overwhelming.
So…
To those who have trod this path before, or shared the road with a loved one, what information and/or resources has been of greatest benefit to you in coping with this bewilderment?
One of the best resources I found early on is a website titled Wrong Planet. It was started by parents and families of people with spectrum disorders, but there are message boards and forums where people on the spectrum can talk to each other as well.
Another feature I’ve noticed among people with autism spectrum disorders is emotional ambiguity - not reacting emotionally in expected ways. Part of that is the difficulty in reading social cues and understanding when other people are feeling sad, happy, afraid, etc. Another part is simply being unable to identify ones own feelings and act appropriately.
Be aware, that for every person who legitimately has it there’s five people who’ve self diagnosed themselves as having it on the internet by reading the traits. If I look at the traits I self diagnose myself as having it, in fact. But I don’t.
In practice, and no cite for this and it may only be the case in the UK - you can *usually *tell someone has Asperger’s from the way their voice and general way of talking sounds. I don’t know how to explain it but if you’ve known plenty with and without it then it springs out at you. Of course that could not be a diagnostic test but just something I mention.
P.S. Also if you are in the UK, taking a bit of risk at revealing who I am related to, you should definitely PM me as althoough I am nothing to do with it, I have family members who can put you in touch with basically the entire “who’s who” to do with autistic spectrum disorders.
There is a message board called The Aspie Hangout you could visit if you want. Not sure if I’m allowed to link to another message board, but you can google that easily.
It’s run by and for aspies. Although, as Simple Linctus mentions, a great many participants there are self-diagnosed.
According to the wiki the diagnostic criteria are so overly broad and lacking in specificity for diagnosing adults by* professionals *it would seem that trying to self diagnose is largely a waste of time.
If you self diagnose, you’re probably not autistic. And is it Asbergers syndrome or you’re just socially inept/shy? (Mother dealing with autistic daughter for 26 years)
Diagnostic criteria Asperger’s Disorder:
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
The input so far is very much appreciated. And the warnings are well-taken. I know precious little about these conditions, and want to educate myself, but don’t have any means of determining which sources of information are more reliable.
As to whether or not the diagnosis is correct, I have no wish to exert any energy trying to refute or confirm it in this thread. My psychiatrist, who has been treating me for depression, anxiety, and attention deficit for almost 10 years, readily admits that he is not a specialist in HFA/AS, and is referring me to someone who is. I’ll leave the actual diagnosis to him. Again, the warnings are well-taken, and I will maintain as healthy a degree of skepticism as possible.
It’s been a frightfully busy day and I haven’t had a chance to visit any of the links provided, so I’ll take some time over the next few days to peruse them as circumstances allow.
Once again, I’m very grateful for the input. It’s the sort of thing I simply couldn’t get elsewhere.
In some ways, I don’t think it matters very much to dwell on if you “have it” or not. As a very sensible woman on one of my support groups puts it “Diagnoses aren’t important. Behaviours are.” If you find the resources, strategy and wisdom of the Autism/Aspie community to be of benefit to you, then go for it! In fact, some techniques and strategies developed for ASD kids are even making it into the mainstream world these days. Because it turns out that things like visual scheduling, social stories and backwards chaining are helpful for loads of people, even if it’s not such a big deal for folks who aren’t, actually, struggling.
I’m going to recommend a blog post of a friend of mine - some of his kids are diagnosed, he’s un-/self-diagnosed (however you like to describe it :))
Well the problem is that in the professional world Aspergers or HFA were simply not known or even diagnosed twenty, even ten years ago. Like at all, period. I was diagnosed as ADHD, a ridiculous diagnosis that didn’t fit at all but was the fad at the time.
I learned very, very difficultly and with a lot of wasted time and damage in my late teens that hey there is no fighting the norms. So I could be institutionalized or homeless my whole life, or start imitating and faking social interaction. I’ve got it down to the point I only slip up on really little things, but it still happens. Strangers will tell me well you’re living here and being here is odd, admit you’re odd, ok man I’m odd happy now? It doesn’t really impact my life much now, after more than a decade of dedicated social mimicry.
But it is really annoying to have people say ah you self diagnosed off a internet list, lol. I guess I should go back to the USA and get a psych to officially diagnose me for fun.