I’ve been noticing a new trend as of late – and frankly I find it a bit disturbing. There is a large amount of people on Aspergers support forums who claim to have Aspergers but really may not – they are self diagnosed. While some of these people may in fact have Aspergers, there is no doubt some of these people claim to have Aspergers as its the new emo – in other words a way to claim to be different than everyone else.Many of the people on the Autism and Asperger support websites are there legitimately seeking support for a diagnosed condition, this used to be a really useful tool for seeking support but as of late its been all but helpful. If you look on support websites such as Wrongplanet you notice what was intended as a support website is all but a support website, people with a legitimate and diagnosed condition are often trolled and harassed by those who claim to be self-diagnosed.
Self diagnosis in itself is a inaccurate and possibly dangerous thing. Doctors never recommend self diagnosing people for one reason – people are not good at evaluating their own conditions and they often tend to think the worse possible. Also Aspergers is often mis-diagnosed by professionals as other conditions which can be treated – but if not can result in violent and deadly behaviors, depression and even suicide.
I have yet to see any of the larger people in the Autism and Aspergers advocacy movement address the rise in self-diagnosis. This is most likely due to it being a tense issue, however would like to hear some opinions from people on this.
WARNING: Opinions are not attacks, as this is a tense issue I want oppinions on the issue at hand, not oppinions on me or other commentors – They will be deleted!
{ 28 comments… read them below or add one }
The problem with self-diagnosis is that in many cases a professional diagnosis is hard to get. If you’re in your thirties or older, you were probably never evaluated for autism as a child because nobody knew then that you could talk and still be autistic. And now that you’re in you thirties-plus, nobody who works with adults will expect a “childhood disorder”. What’s more, the diagnostic criteria were designed for children, not adults; so somebody who as a child would have been diagnosed with Asperger’s often does not match those same traits as an adult for the simple reason that a lot of those traits change as you mature and learn more… Many diagnosed adult Aspies were self-diagnosed before a professional confirmed their suspicions… Oh, and many professionals are really pretty bad at diagnosis, so even a professional diagnosis can be incorrect. The most likely state of affairs is that that some self-diagnosed people have subclinical autistic traits (non-diagnosable “spectrum cousins”), but these people still do share a lot of traits with people who are diagnosable as autistic. That might make them technically non-autistic, but not by much… one doesn’t self-diagnose Asperger’s if there aren’t actually any problems with socializing, deficient or different non-verbal communication, stims or special interests.
This is a very touchy subject and I commend you for taking it on. There are some self diagnosed on the Hub, there are also some famous diagnosed folks who write books that have had their diagnosis critically examined with some pretty convincing evidence to contradict the diagnosis.
There are some undiagnosed that I believe are on the spectrum much more than those that are either diagnosed or self diagnosed.
I do think there is a danger to self diagnosis. I also think there is a danger in unqualified clinicians diagnosing people.
There are certain forums that attract “autistic” people where I don’t find anything in common with in communication style, there are other forums where AS (identified as diagnosed folks) clearly shows in videos. I’ve found the YouTube AS audience much more similar to me than the forums you mentioned. What makes YT different than the other forums is that it isn’t typically used by people with AS to “chat” but to “rant”, which is far more my style. CS – Officially Diagnosed by UNC – Chapel Hill TEEACH Center, 2005. l
Personally? I am not worried about self-diagnosis really at all.
If someone is not actually autistic they will more than likely get bored eventually with the idea and move on to something else.
If anyone of any neurology is harrassing or trolling others, that needs to be dealt with on its own terms, but I don’t think diagnostic legitimacy has much if anything to do with how that ought to be dealt with.
I think that dwelling on the legitimacy of other people’s diagnoses is unhealthy. That is my opinion. I think that sort of thing will sort itself out in time.
It *would* bother me if a lot of sociopathic serial killer types were running around claiming they were autistic based on bad and ugly stereotypes about autistics supposedly “not caring about anyone else”. But that seems quite rare.
The other thing I’ve heard is that an adult with an ASD diagnosis risks losing health insurance or finding himself unable to get life insurance.
The problem with ASD diagnosis is that everybody is so different. I meet kids with AS diagnoses who don’t have special interests, don’t talk like “little professors,” had late speech development, etc. Many of them have ADHD-type behavior, are picky eaters, and have sensory issues, and this is interpreted by some clinicians as Asperger’s. So I would say there are just as many medical AS diagnoses that are incorrect as there are self-diagnoses.
I seem to recall from Pretending to be Normal that even “Asperger’s spokesperson” Liane Holliday Willey is self-diagnosed (although perhaps she has since gotten a medical diagnosis?).
I agree that there’s a lot of self-diagnosis that’s very questionable. And I say that as someone who is self-diagnosed. I think that the younger the person, the more likely they’re going to self-diagnosis incorrectly, usually on the basis of limited information. They see an article or blog post about social difficulties or some other symptom and think that’s their problem. Accurate self-diagnosis requires extensive reading and an understanding of the complexity of the spectrum, and very close and honest self-examination.
I was one of many who self-diagnosed, but I realized that I could have been on the wrong track. So I sought out and easily got diagnosed by more than one professional, although one diagnosed AS and the other PDD-NOS.
I agree with chaoticidealism and AnneC.
While disabled people occur in nature, diagnoses are man-made. Diagnostic categories and criteria change all the time. For one thing, the DSM-IV PDD committee is seriously considering getting rid of Asperger’s and PDD-NOS altogether and just using “autistic spectrum disorder.”
I was first diagnosed with nonverbal learning disorder (NLD) in the early 90s, and fit enough of Byron Rourke’s criteria back then. (I’d had years of neurological testing by then which all showed the same things pretty reliably). By 2000, Rourke drafted a set of criteria for the International Classification of Diseases that had some differences from his criteria I was diagnosed with. (Like subjective qualifiers that weren’t in the older stuff: “extreme deficits in social perception,” for instance). I *don’t* meet enough of the new criteria; if the version that exists now ever became official, I wouldn’t have NLD anymore, even though nothing about me has changed.
Professional diagnosis is just a way to categorize different kinds of people, and is as subject to personal biases and subjectivity as anything else.
Ah but them ‘as as got through the gate is always after shutting them out who want to follow.
Will the last one to get an official dx shut the stable door, to stop that horse bolting out and seeding all our night-mares
I sometimes wonder whether what I see is Autism at all but sociology, in fact all I do see is sociology, the same patterns of in groups and out groups and those who pass and those who don’t and you know what I am sick of it all.
You can have that world and you can hedge it about, but I have mine, and it is not of this world at all.
“Who told thee thou wast naked”
Do we need the definitions of others or has this emporer of diagnosis no clothes at all?
I sometimes call myself a half-aspie…
im 17 and think i have aspergers does that mean that i dont and i shouldnt get it checked out?
TomB,
Yes – I most definitely think you should be checked out. Aspergers is a condition that can make your future rather difficult – even more so with the transition to independence that your facing soon.
Getting a diagnosis can open the doors to any future assistance or help you may need.
-Zach
Also, from reading TomB’s comment I am reminded of something that I think happens but people may not necessarily be aware of.
And that is when it is thought that autistic people somehow categorically lack self-awareness.
As if somehow if you can hear or see something about autism and recognize it in yourself, you are perhaps *less* likely to actually be autistic than someone who has no idea.
I don’t think that is true, though. Introspectiveness seems to be a trait that people have to greater or lesser degrees regardless of whether they’re autistic or not.
I think that people who can recognize themselves as being autistic, regardless of where, how, or why they find out, probably just have whatever amount of introspective capacity is necessary to “think about thinking”, etc.
I spent many years before being diagnosed trying to “hack” my brain and figure out why people kept calling me weird and pointing out my reactions as atypical even though it felt “normal” to me from within.
By the time I was actually dxed (in my mid twenties; I just turned 30), I had *already* determined that I had certain “quirks” and was somehow “mapped differently” than a lot of other people I encountered.
The diagnosis did not, therefore, drastically change my self image — all it did, really, was inform me that some of my attributes fit a kind of pattern. And there were elements of relief in that, but really my overall reaction was one of, “oh, hmm, interesting.”
I *was* somewhat relieved to know why certain other things were so difficult for me (and that my inability to do them, or do them consistently, was not just because I was “lazy” or motivationally inept or subconsciously, deliberately “trying to make things difficult for other people”).
But that did not mean I was suddenly going to try and start using the dx as an “excuse” — it was more of a thing where a lot of stuff just suddenly made more sense, and there was less cognitive dissonance, and I was able to find more productive ways of dealing with certain difficulties than before (because I wasn’t wasting so much energy trying to do things in standard ways out of a belief that since I was no different from everyone else, the only things that were keeping me from doing things in those ways must be moral weaknesses).
So, anyway, I guess what I am trying to say is – I don’t think people of any diagnostic status should feel like suspecting they are autistic by definition means they can’t possibly be. That doesn’t make a lot of sense considering that nonautistic people are generally perfectly okay with stating that they know they’re *not* autistic without having to have someone tell them so.
In other words, while autistic people may have some difficulty using language in particular ways (or at all), it cannot be presumed (and I am pretty sure no such assumption was made by Kanner or Asperger) that we are incapable of introspection or of finding patterns that correlate our internal states with descriptions and experiences of others we encounter.
I would almost wager that some autistics probably develop almost an “introspection perseveration” in response to finding the world and its responses to us (and ours to it) incomprehensible as we start off life with such different perceptual/cognitive defaults than those around us.
AnneC that is the original catch 22 if you recall.
It is also the means of social control amongst Autism Squeaks and our enemies that they would exclude us from diagnosis because of the threat we represent to there hegemony, in that the last thing they need for survival is a people who can speak for themselves. And that is precisely why they are and will remain the enemy until there organisations are no more than historical footnotes.
I read the blog and comments, I agree with everybody, self diagnosis has its pitfalls, so does ‘professional dx’, when the insurance industry, the government, the pharmaceutical industry, the psychiatric and medical industry get their fingers in the pie if you don’t think there are pitfalls you have another think coming. is this trolling? I didn’t research until I had no insurance, so the only recourse was self research, self knowledge, self dx. I took the online questionnaires, read the websites, communicated on support groups, I didn’t see it as trolling, I tried to be circumspect, use nettiquet, or learn it gradually. I would rather be labelled aspergic than schizoid personality disorder, or NOS anything, the ‘help ‘ is expensive and questionable. a questionnaire by Leif and Lorelei Inger shows I have aspects of aspergers and NT ( nuerotypical) the disclaimer says I cannot rely on it a definitive dx, of course not, I am 60, I somehow managed to get thru a work career, raise a family, not get arrested or committed to a mental institution, tho I think working in one helped, you learn how to avoid commitment,
I’m 15 years old and currently “self-diagnosed”. My mother has suspected that I’ve had Asperger’s for quite some time and I’m getting evaluated soon, however, so is there a problem with me being on support sites– should I leave?
I think this article is right about self-dx in some respects. However, there are some pitfalls to official dx, too. If you are official dx, then you’re at higher risk of having your kids taken away, especially if you’re unmarried. I actually heard of this happening to an aspie woman. She had a baby and it was taken away simply because she was autistic.
I agree with Kendra and Sadder, Kendra you should not leave the support sites. Sadder you are right to be cautious with official dx. praise the lord for the internet, autodidacts rule, if more people took responsibility for their own health, the insurance companies might be less profit motived.
While I agree with what you are saying, I think that Asprgers is something that you can just know you have. When I was in 7th grade I did some research, and determined I had a very acute form of Aspergers. I never once mentioned this to anyone, and I actually never even mentioned Aspergers or Autism. When I was in 11th grade my parents told me they had been reading and studying Aspergers for over a year– A family friend who was a therapist suspected I had it. He later confirmed my self diagnoses.
What I’m trying to say there is that while I fully understand where you are coming from, I think Aspergers is something where you really do just need to know yourself, and you don’t always need a doctor for.
I know quite a few self-diagnosis folk, find some of their claims absurd on the face of it, others, not so much. I’ve also had professionals tell me I need to be evaluated, including my sons neuropsych after she read my childhood medical files (she wanted a copy of both mine and my wifes to check for family traits), something I am concerned over due to medical insurance reasons. I am of two minds over it, do I have aspergers, and does it truely matter? I just refuse to self-diagnose due to the experience with the people I mentioned at the beginning of this message.
Some of the “trolls” on WP have formal diagnoses. I’ve noticed I tend to clash with the ones who can hold down jobs, so I think it has more to do with functioning level than diagnosis per se. There’s a lack of compassion from some higher functioning folks (with/without diagnosis) for those who aren’t doing so well. Poverty germs?
Diagnosis costs money. When you’re a teenager and pretty sure that you have Asperger’s, where would you get the money? It costs at least $100. It’s not like I could come up to my mom and say “mom, can I have $100 to buy something?” I’d rather keep it to myself, because I know that if I ask, my parents will start worrying and I don’t want them to. Maybe I will get diagnosed later, but for now it’s not interfering with my life that much and I don’t have any special needs, so I choose to stay undiagnosed.
I am 56 and was diagnosed with AS in January of this year.
I was diagnosed with ADHD in September of 2007.
I was diagnosed with NLD several years ago.
Life has not been very difficult for me and these diagnosis have helped me. I have been self-educating which is part of my treatment and I realize that my symptoms are normal for me.
I thought that many different groups would be helpful and that I would be able to connect with my kind so to speak, I have difficulty relating at the best of times.
I find that some of the Professional Autism sites are quite good but not many.
As far as self-diagnosing, I knew something was wrong with but could not find out what it was.
My diagnoses were a fluke, I didn’t go looking at all, I had just given up and was referred to my present Psych and I am glad I kept going I was about to stop seeing her when she did diagnose me.
I started seeing my Psych in 2006 and it took her a long time to diagnose me with ADHD and started to take Ritalin and Modafinil in 2007 my world changed. It was like being reborn, I could finally string 2 thoughts together. That led to my diagnosis of Asperger Syndrome. I was shocked, the ADHD made sense but AS, I didn’t get it, I didn’t even know what it is.
Now that I have a bit of a grasp I can see that I have these symptoms. My Psych tells me that it is just a construct which helps me understand myself and I have stopped comparing myself to Neurotypicals. I understand that I have a unique and separate “Way Of Being” in the world.
So I have decided to live to the best of my ability.
I DARE myself to be the master of my own life,
I expect myself to do my best each and every day!
I have always done this but was always anxious, bullied, harassed, taken advantage of despite working so hard to fit in to do the right thing and so many other things.
Now I have peace, all the questions I had as a child have been answered, I have forgiven everyone including myself.
Even before the diagnosis I had somehow grown, I guess by giving up constantly fighting I was able to start being me.
I can enjoy isolating, that’s what I do, I need to close the door and be away from the world, now I don’t have to feel bad about it.
My diagnoses have done this for me.
I am now trying the GF/CF diet and it is making a huge difference in my life.
If I have something made of wheat I am very sick from it, casein alters my awareness or consciousness.
Everything looks less sparkly.
If I had not been diagnosed I would simply have kept looking for solutions, I never looked for a diagnosis for anything.
So my diagnosis has opened a new world for me, there are so man books to read which is very difficult for me but I keep trying, I keep reading to the best of my ability.
Also because of my diagnosis I value my parents so much more, I reconnected with my family due to my diagnosis, I was spent the last 2 years of my Mother’s life with her, I was with her when she died, I am looking after my Father.
Without my diagnosis I simply could not have done this.
Self-diagnosis, I don’t know how I would have ever gotten on that track, I needed a professional to do that for me. I had to be tested and frankly my Psych is amazing, she is tenacious and persistent.
I was under Psychiatric care for 17 years and was diagnosed with something else but her she is great and the results were immediate for me.
I also studied Transpersonal Psychology, I was desperate for answers I tried everything… Transpersonal Psychology… oh that was a very embarrassing episode of my life. They are a very odd group… very troubled people with a hidden agenda of healing people. They want to be healers and they are very against drugs. When they can’t heal someone they label the client/victim as being retarded/stupid… very harmful. I did enjoy certain aspects of it though, the meditations were kind of fun but the textbooks were very funny indeed… metaphysics, wooo… voodoo, hoodoo, all manner of snake oil sales.I am so thankful for my diagnosis, it put an end to my futile search for answers.
I think if I had self-diagnosed I would not be able to take myself seriously, I would be trying to convince myself everyday till I was professionally diagnosed.
I disagree. I have seen numerous psychologists and psychiatrists over the past 8 years who have all told me that I have social anxiety disorder and that I need to accept it and get over it, and I have been on every social anxiety medication there is with no effect. I am 23 and have not had a friend nor have I been able to communicate with anyone since 12 years old, although the actual age is likely much younger. I get by but most times my communication is just barely functional . I also push my head and upper body in different directions, have very little empathy even for family members, and seem to fit just about every trait characteristic of the disorder. What really blows my mind is that no professional I have seen has picked up on the fact that my anxiety started occurring at the age of 17 and that it never occurred before this. My initial hypothesis was that concentration problems stemming from ADHD earlier in my life limited my comprehension of communication skills, including topics of discussion, communication frameworks and social cues which in turn and over time has led to intense social anxiety, but a heavy trial run of aderall has thus far not supported this. I recognize that the reversal structuring may not be linearly correlated to the onset structuring and that targeting ADHD with no effect by no means disproves this theory. I must admit however that this seems highly improbable given my mental health background. Asperger’s syndrome seems to be the only plausible suggestion. I have twiddled my thumbs and practiced breathing techniques in unbearable awkwardness with professionals for the past 8 years, never able to make eye contact, and I will no longer do so. I will get my diagnosis reviewed and certified but that is all. Although I did go to school for biology and have much experience hypothesizing theories based on correlations which I am sure enables me to self-diagnose better that the average individual, professionals in the field of psychology seem to demonstrate very little ability in diagnostic skills. I welcome anyone with a mental disorder to self-diagnose, of course you should confirm your diagnosis with a professional afterward.
After self-dagnosing one’s self as an older adult, getting an accurate professional diagnosis may be difficult. Some symptoms of AS attenuate or even disappear with age, including physical clumsiness and even lack of social skills, making it much harder, I imagine, to diagnose AS in older adults than in children. One pediatrician friend scoffs at my AS self-dagnosis at age 59, on the basis that I’ve been a lawyer for almost 30 years, and couldn’t have been successful at that, if I’d had AS, an argument which I think shows her ignorance about AS in adults. Which brings up another obstacle to getting a meanigful clinical diagnosis, namely that there are so few clinicians who specialize in ASD and/or AS. Put another way, older successful people with AS may well have AS that’s “invisible” even to a good specialist in ASD/AS. So, all that’s left is self-diagnosis, at least for folks like me. Knowing that I’ve always been uncomfortable with small talk and looking people in the eye during social conversation, clueless about nonverbal communication, had difficulty making friends, took things too literally, focused on computers, electronics, and chemistry (before I went off to law school), was uncoordinated and clumsy as an adolescent, all that’s good enough for me. I don’t feel the need to travel across the country and spend thousands of dollars to be told what I already know. One final note: You folks who have a clinical diagnosis of AS shouldn’t be dismissive of those of us who are self-diagnosed. We’re not just wannabees. I mean who would choose to classify him/herself as eternally socially inept? For those of us who are self-diagnosed, it’s because we discover that our difficult pasts (in school and college, being bullied, ostracized, etc.) and presents (still feeling uneasy with social interaction) fit well with a great majority of the symptoms, and there’s no better explanation.
I have read a lot of material on the Asperger Syndrome. I also have the book of Tony Attwood and I cannot draw a clear conclusion for myself. I find it very difficult to self-diagnose, as all criteria seem so subjective and I cannot really test the criteria for myself in real life. In any case, I certainly do not have all traits and that makes me wonder if one can speak of AS as a separate disorder. I think one should speak about the autistic spectrum (i.e. a continuum with several ‘axes’) and not about clearly separated disorders within the spectrum. In fact, in my opinion, this is a contradiction.
Furthermore, I don’t understand how the symptoms of AS can diminish with age. I mean if the symptoms do indeed diminish so that you have to really turn a person upside down to find a trait that might be AS and that he or she is average on social skills, communication, speech and activity pattern, by definition it is NOT AS. Or I am mistaken? If you don’t anylonger encounter any major difficulty, why would you seek a label that does not exist (anymore)?
The only thing I know is that I am going through a very bad period in which I am really questionning what is wrong with me and feel terrible feelings of hopelessness. And the internet only amplifies my insecurity and confusion.
I decided to go to a professional autism team to have me diagnosed, knowing that there is a risk of misdiagnosis.
for half aspie, sometimes I’m fast, sometimes I’m slow, most of the time I’m halffast. I agree, but I will seek dx from VA, to see if there is anything to it. agree with others who warn that incompetent diagnosticians are a dime a dozen. I passed out pscyhotropics for most of my working career, (worked 3-11) . do not trust the psychiatrists or other psychos. or the pills, maybe short term behavior therapy? used judiciously. affordably,
I would never seek a clinical diagnosis because it could very easily ruin my career to have one. I’ve always been extremely careful to fake being normal during psychological screenings, as well. I’m sorry you think the only reason to self diagnose is to be some kind of poser. Having developed coping strategies to deal with my weirdness for many years, I don’t feel like I’m incabable of objective self assessment. Anyway.
@Kory
May I ask what your career is?