How many self-diagnosed Aspies actually have it?
04 Mar 2013, 1:34 pm
I have searched high and low, and can't find a number, maybe some of you know?
Approximately how many people who self diagnose themselves with Apergers actually have Apergers as a confirmed diagnosis?
Maybe you have seen a website, or a graph or chart that shows that information somewhere?
I have noticed that nearly all adults with Apergers were self-diagnosed first, then went to get it confirmed.
(sorry, this seems to also turn into a rant a little bit... Too much stress, I guess. and off topic.)
Why I am wondering:
- Reading about Aspergers is like reading about myself; I am NOT saying I am self-diagnosing, I don't have the knowledge to diagnose... (but would like to get tested)
- So, for understanding and help, I am looking to get tested (for diagnosis or finding what I have)
- My mother knows that I am diagnosed/taking meds for ADD and Anxiety (suspected for depression and OCD; we just got insurance and finally have been going to the doctor the last 3 years!)
- despite that, she still doesn't understand that I can't just "get over it" and talk to people or go into certain situations. (Examples: 1) Where I keep my horses the property owner also sells hay, my mom doesn't understand and gets VERY mad at me when I can't *just* go find him or call him and ask to buy hay... 2) I get too nervous when people watch me ride or work with my horses, so I do at odd times, or I stop when they watch, etc. 3) I need help and hate talking on the phone, she gets mad at how I need her to help me call people even though I'm almost 18...)
- My mother is sure I am wrong, mainly because she won't listen to me; and I get messed up when I'm on the spot for speaking, so I am going to prepare a letter or amybe a power point for her...
- She gets mad at me a lot lately.. It makes me mad, then mad at her, then myself, then I just make myself feel bad. (we both know the cause of it right now, it's a person/family member. it is the cause of my stress, then root of our arguements. it is a long story.)
- I am not "normal" and I've never fit in (maybe just really bad social and empathy issues, maybe something else)
04 Mar 2013, 2:11 pm
How would you conduct such a study to get the number? The group of people volunteering for a study on diagnosis of ASDs would not be the same as the general population of self-diagnosed ASD people...
There's more research on how accurate professional diagnosis is, usually done on specific testing instruments. For example:
Factors that change the accuracy of autism diagnosis include:
--Age of patient (either very young or older than the mid-teens are harder to diagnose)
--Sex of patient (females are harder)
--Presence of other developmental disorders or psychological disorders (comorbids make it harder)
--Availability of medical care
--Attitude of the culture in the area (autism is more accepted in some areas than others, and more well known by some medical communities than others)
--Medical history including a previous diagnosis which may "throw off" a doctor's guesses
--Parental attitudes about psychological problems and disability; availability of accurate early-childhood records and observations
Psychologists are unable to tell apart specific sub-categories of autism; such diagnoses are generally unreliable. If a psychologist diagnoses someone as having an autism spectrum disorder of some sort, the patient is very likely to have an autism spectrum disorder, but whether the doctor has chosen the correct ASD is little better than chance. This points to the idea that the idea of autism as a phenomenon has meaning, but the idea of sub-categories like Aspergers/Kanner's has little diagnostic relevance and perhaps even little bearing on reality.
Diagnoses of Autism Spectrum Disorders Lack Reliability
Here's a slide show on autism reliability measures. Requires some basic statistics:
Autism Diagnostic Measures: Sensitivity, Specificity and Utility for Diagnosis, Eligibility and Planning
Bottom line, I think, is that autism diagnosis is not totally reliable--that if you are professionally diagnosed, it's not absolute that you are actually autistic. Someone who tries to diagnose themselves may be wrong and are usually untrained, but they do have the advantage of knowing more about themselves (if they are self-aware) than a professional can ever know. Many autistic people are totally capable of training themselves.
I think self-diagnosis is probably about as reliable as some of the generally-used professional diagnostic instruments--that is, it is correct often enough to be useful, but misdiagnosis is still a real possibility.
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04 Mar 2013, 2:11 pm
I was loathe to self-diagnose and call myself something that I might not be, but I had a suspicion that I was AS. I did go on to get evaluated and was Dx'ed with AS. I do not call myself AS yet because I'm going to get a second opinion because I still worry about the parts of me that Don't scream "AS". Until I get a second confirmed Dx of AS, I don't feel right using the Dx for myself.
Some people I know think my Dx is correct and some others don't. So, it lends to more internal confusion.
I mean, even NT people can be gullible, lack common sense, don't see the forest for the trees, get lost walking around the block, piss people off unwittingly and be OCD, right? Or just not in the same package?
04 Mar 2013, 2:15 pm
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whirlingmind
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04 Mar 2013, 2:23 pm
Approximately how many people who self diagnose themselves with Apergers actually have Apergers as a confirmed diagnosis?
Maybe you have seen a website, or a graph or chart that shows that information somewhere?
I have noticed that nearly all adults with Apergers were self-diagnosed first, then went to get it confirmed.
I highly doubt whether any poll has ever been taken on this. I am sure many people who go for assessments are self-diagnosed (or at least are going specifically for an ASC assessment rather than a general mental health assessment because they recognise the traits in themselves) but professionals are way too snobbish to tell patients they are correct most of the time. They in fact often don't like it when you go and ask to be assessed for a specific condition because they feel it's insulting their knowledge and you shouldn't be gearing everything into it being a particular condition. They like to be the ones to rule out other possibilities and arrive at a conclusion without the patient coming along with stores of knowledge and knowing more than them.
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04 Mar 2013, 2:25 pm
There is no way of knowing how many people who diagnose themselves as Aspies actually have Asperger's Syndrome, and how many of them are merely self-deluded poseurs.
While one may suspect that they may have AS, only an appropriately-trained and licensed mental-health professional can make a valid diagnosis of Asperger's Syndrome (AS); and, thanks to DSM-V, anyone who seeks a diagnosis after May of this year will no longer receive a valid diagnosis of AS, but only some form of Autistic Spectrum Disorder (ASD).
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04 Mar 2013, 2:28 pm
Ash, I wish to point out that not all autism diagnoses coming from doctors are valid, and not all self-diagnoses are invalid. All doctors can do is take a look at the symptoms and match them to the symptoms list for autism. Since there are no objective medical criteria for ASD's, it is very subjective no matter who does the diagnosis. And who knows me better than I know myself?
As far as doctors go, between my insurance companies and my own pocket, we shelled out many tens of thousands of dollars and got no diagnosis. I might as well have flushed all that money down the toilet.
I am "self-diagnosed" (although I did have one doctor tell me a few years ago that she thought I had AS), and until I see another condition with identical symptoms, I will continue to assert that I am autistic. What's more, formal diagnoses are very expensive, time-consuming, and I just don't like doctors enough to tolerate such an ordeal. Besides, unless one is looking for handouts or special privileges, what's the point?
04 Mar 2013, 2:32 pm
Only stats I know are from my own analysis, based on data from this forum:
http://abnormaldiversity.blogspot.ca/2011/08/accuracy-of-autism-self-diagnosis.html
04 Mar 2013, 2:37 pm
Approximately how many people who self diagnose themselves with Apergers actually have Apergers as a confirmed diagnosis?
Maybe you have seen a website, or a graph or chart that shows that information somewhere?
I have noticed that nearly all adults with Apergers were self-diagnosed first, then went to get it confirmed.
(sorry, this seems to also turn into a rant a little bit... Too much stress, I guess. and off topic.)
Why I am wondering:
- Reading about Aspergers is like reading about myself; I am NOT saying I am self-diagnosing, I don't have the knowledge to diagnose... (but would like to get tested)
- So, for understanding and help, I am looking to get tested (for diagnosis or finding what I have)
- My mother knows that I am diagnosed/taking meds for ADD and Anxiety (suspected for depression and OCD; we just got insurance and finally have been going to the doctor the last 3 years!)
- despite that, she still doesn't understand that I can't just "get over it" and talk to people or go into certain situations. (Examples: 1) Where I keep my horses the property owner also sells hay, my mom doesn't understand and gets VERY mad at me when I can't *just* go find him or call him and ask to buy hay... 2) I get too nervous when people watch me ride or work with my horses, so I do at odd times, or I stop when they watch, etc. 3) I need help and hate talking on the phone, she gets mad at how I need her to help me call people even though I'm almost 18...)
- My mother is sure I am wrong, mainly because she won't listen to me; and I get messed up when I'm on the spot for speaking, so I am going to prepare a letter or amybe a power point for her...
- She gets mad at me a lot lately.. It makes me mad, then mad at her, then myself, then I just make myself feel bad. (we both know the cause of it right now, it's a person/family member. it is the cause of my stress, then root of our arguements. it is a long story.)
- I am not "normal" and I've never fit in (maybe just really bad social and empathy issues, maybe something else)
I can relate to a lot of what you wrote, and I also struggled with severe phone anxiety when I was younger. I used to practically go into a panic when I had to make a call to an adult and that continued well into my twenties and sometimes even today.
I was never diagnosed with anything but I constantly struggled to just be normal and apply myself like everyone demanded from me. Years and years of wanting to scream at myself, because I couldn't do certain normal things and didn't understand why that was.
I also hav trouble with people watching me ride my horse, and I get incredibly annoyed with extra people around. I'm wondering..do u ever feel overwhelmed while riding? Because I sometimes get overwhelmed from all of the multi tasking that goes with riding well. From the position of every part of my body, the movement and attention of the horse, and when and how to apply the aids. I used to get angry when I was younger and had to stop riding for the day, but now if I start to feel a little panicky I just hav to realize I feel that and it seems to go away.
So anyhoo....decades later and I finally figured out I must be aspie, and I also hav OCD traits along with high anxiety.
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AQ: 41/50
Ichinin
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04 Mar 2013, 2:45 pm
I selfdiagnosed myself before i got a positive diagnosis.
...but then i did not see myself as a "quirky person" or someone who were a "social outcast" because of my choices in life 
What got me 100% sure was actually reading the diagnostic criterias and being honest to myself.
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04 Mar 2013, 2:51 pm
The doc who Dx'd me said the AS was probably worse when I was a kid but that I outgrew many of the problems, and now deal with parts of the diagnosis that interferes with my parenting and some job-related stuff. Certainly is not debilitating as it once was, but the depression and eating disorders as a result of feeling inadequate and fundamentally flawed and lonely certainly were debilitating problems.
04 Mar 2013, 3:06 pm
Indeed. Do know someone who claims he has it on the basis of being good at maths. :S I've known him for about 5 years now and really can't see it in him at all.
I've had people online tell me I don't have. Don't understand how a non-medically trained person can claim something like that - especially someone who has never met me.
04 Mar 2013, 3:16 pm
Is this a generational thing? A geographical thing?
I've worked in social care with adults for most of my life, and haven't come across one person to date who self-diagnosed with AS or any spectrum related disorder....Not one person who pretended they had it.
Frankly, I'm flummoxed .. I keep seeing this kind of thing written on this forum.... is it an american thing?
when I self-diagnosed - a couple of family members tried to dissuade me from getting a formal diagnosis ---- and one friend did say : is this a trend - so is this a media-made issue?
It must be so confusing for people like the OP to know whether to pursue a diagnosis, when people have got this issue on top of everything else to deal with... ie people not believing, and also people saying that they "know people who pretend they have it..." etc..
Glad I just did what another poster did - read the criteria, realised they fit, self-diagnosed, then got my diagnosis. It is simple, even for a middle-aged adult.
04 Mar 2013, 3:30 pm
I was interested in Autism to help me interact with a neighbour's child.
I found other people with traits I've had since childhood - face blindness, social confusion etc
A few online tests confirmed I can do online tests ( and score highly too, half and half)
At my age, there is no point getting a diagnosis.
It is just good to know that there is support for kids now so they won't have to struggle like I did.
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