the indiscriminate diagnoses of asperger's and h.f.a.

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this post is likely to arouse a lot of controversy, but it is a matter that ought to be addressed (in my opinion):

in recent years, asperger's syndrome has garnered much media attention and it's almost become 'fashionable' to identify one as such; however, from what i've gleaned from innumerable sources (including this forum), i'd venture to guess that more than 50 percent of those who believe themselves to have asperger's syndrome or hfa are not even remotely autistic. if one were to carefully scrutinize the diagnostic criterion, it becomes clear that, among other things, autism must be present in childhood - one does not somehow become autistic at a later stage in one's life. moreover, the social deficits and neurological complications inherent are quite profound and debilitating and there are a number of physiological criterion as well.

to use myself as an example, i was diagnosed with autism in childhood (i'm now 36) but as linguistic deficits were not present and i excelled academically with virtually no effort, the diagnosis was mostly 'shelved' and ignored; however, i had a lot of problems: i rocked myself fervently and compulsively throughout the day and at night, i would curl up into a fetal position and rock myself for several hours in order to get to sleep - at one point, i threw myself out of bed and cracked my skull open, necessitating a lot of stitches and (presumably) instigating a seizure disorder that was to commence several years later. i never had any friends throughout childhood - were i to attempt to 'play' with other kids, it quickly got out of hand (at times, even provoking me to act with violence) as i felt compelled to control absolutely everything. while i was a precocious and ravenous reader, i had profound difficulties understanding anything that was spoken to me - throughout my schooling (primary and much of secondary), i was sat in a corner facing away from other students and worked independently from other texts (in most subjects i was a couple of years ahead of everyone else). i was constantly mocked and harangued for my flat, monotone (and pretentious sounding) voice and tendency to speak in a strange affected (almost scripted) manner, my profound lack of coordination (i can not 'do' any sports (except bicycling) and i walk 'funny' (on my toes)), my inability to understand jokes and my tendency to throw tantrums as the slightest provocation, and countless other idiosyncracies. i only acquired some 'normal' social skills in my late teens and early twenties, and it was a result of very concertedly studying films, television, and books. i was often 'mistaken' for being 'ret*d', although when my academic capabilites became apparent, that was forgotten.

i would only eat bland, white foods (if there were even a speck of black pepper in my potatoes, i wouldn't touch it) and i was hospitalized several times for a curious digestive ailment (now described as everything from 'leaky gut' to i.b.s. to ulcers) and i've had three blood transfusions (the last one being for 8 pints!) following extreme hemorraging. in many respects i seemed immune from pain - i would often make attempts to 'electrocute' myself by playing with sockets; in other respects, i was hyper-sensitive - wind and rain were always extremely painful, light and color was always too overwhelming, and most clothing 'hurt' my skin. i had extreme, almost allergic, reactions to most medications, and to this day the only drugs my body can accommodate (for the most part) are opiates and benzodiazepines. bed-wetting and somnambulism were prevalent until a very late age. when neurological symptoms (tics, seizures, tourette's-like behaviors) began to manifest, various brain scans revealed both structural abnormalities as well extremely atypical regions of activity and inactivity.

there were many other factors, but in short: being autistic really f'ing sucked. while i feel that many of my strengths (i'm a writer and musician and a dog trainer, and my writing and music seems to be well-appreciated (it sells)) are, in many ways, a product of my autism; the fact is, the first 20-odd years of my life were a living hell. at the age of 20, a rather inattentive psychiatrist diagnosed me with (and treated me for) schizophrenia. i am not schizophrenic, but many symptoms of my autism and epilepsy could readily be construed in that fashion by one who is not willing to probe further: extreme synaesthesia, my inability to make coherent sense out of spoken language and the resultant paranoia, flat affect and wildly inappropriate emotional responses, obsessive-compulsiveness, tics, etc. finally, at the age of 25 (whilst a graduate student in canada) i was treated for a seizure disorder and the pertinent attributes of autism (ie. hypersensitivity to meds) were taken into consideration.

my point is that, while it's clear to most that ad's (especially ssri's) are inappropriately over-prescribed (to people who really are not clinically depressed), i think it's also clear that asperger's and hfa are being diagnosed (or self-diagnosed!) indiscriminately. there are many attributes of autism that can be profoundly debilitating and for so many to practically boast that they have asperger's is not only ridiculous, it also undermines the efforts of those who are experiencing very real problems as a result of autism.

A friend of mine once said, "I don't believe you can meaningfully separate high-functioning and low-functioning autism, but if you can, it's not by comparing their political opinions." By political opinions she meant among other things whether a person felt positive or negative about being autistic.

I would expand that to say that you can't tell, based on whether someone is positive or negative about being autistic, whether they are really autistic or not.

And personally I get really sick of the messages of "Real autistic people's lives really suck," and "People who like being autistic just don't have the kinds of problems I have."

Before anyone leaps to any conclusions about me based on these statements, please read through my entire website first. (The "entire" part is important.)

And, by the way, unless you have an accompanying syndrome or something (I do, but that's not anywhere close to universal), most of the physical problems you describe are not by any means part of autism. But then, I'm autistic-and-proud (yep even with the accompanying physical crap -- IBS, catatonia, reflux, seizures, severe neuropathic/central pain, heart problems, constant migraine, RSI, TMJ, tics, abnormal all-sorts-of-brain-scans, and a partridge in a pear tree), and so is a woman I know who has VATER association (one of many syndromes that result in organ and skeletal anomalies as well as often autism -- I don't have it, she does) so severe that she required multiple surgeries throughout childhood just to survive because her organs were fused to each other in bad ways, so that doesn't really show much either.

And I've been through hell for being autistic -- so have many people here -- but I don't believe that hell to result from being autistic.

So I don't have a whole lot of sympathy for the idea that "Autism sucks and people who don't think so Just Don't Know How Awful Things Can Be." I've heard it all before. I've in fact gone through and compared who said it versus who took a more autistic-and-proud stance, and found people who took both stances within all so-called functioning levels by ordinary standards. There's people normally regarded as ultra-high-functioning who whine about how much their lives sucked "because of autism", and there's people who were regarded as "severely/profoundly mentally ret*d" until a fairly late age and went through all kinds of hell and had no communication system until late who are autistic-and-proud. And of course the reverse.

It's about attitude, not about abilities. As someone who's considered by ordinary standards pretty severely impaired, I find it particularly offensive that I'm supposed to feel crummy about being autistic just because of what form being autistic takes for me. I'm just fine with being autistic, and if you read my abilities and history on that website you'll see that I'm definitely not the sort of person who's "supposed" to enjoy being who and what I am. But I do, and I hate it when people spread stereotypes that imply that I and anyone else like me is supposed to be miserable about it, and by implication also that anyone not miserable about it is Not Autistic Enough To Understand or something.

So, yeah, I'll openly be totally and unabashedly unashamed of who and what I am, if that's "boasting" so be it (although I doubt it is), but who and what I am probably isn't what you'd think it is based on how glad I am to be configured this way.

first of all, i want to make it clear that i did not in any sense whatsoever suggest that a person ought to be ashamed of being autistic, nor did i suggest that it necessarily be a hellish existence. i would appreciate the wild extrapolation that one is 'supposed to feel crummy' not be taken as part of what i said, because... well, i didn't say that. i'm simply suggesting that there are an awful lot of imprudent diagnoses being made, and not only are they being made just by someone with the credentials, they're being made by just about anyone. i think very few would deny that in recent decades, the medical establishment has persistently thrust countless syndromes and disorders into our laps. how many pharmaceuticals are advertised in a typical one-hour television slot? it's irresponsible, and worse, it's detrimental to most everyone's well-being. i think: don't fix it, if it aint broke, is a fairly apt truism in such matters.


edit: someone pointed out your website to me a long time ago. i think it's an excellent site; however, as you mention, the 'entire' part is critical - i suspect that a lot of people go to the site and check out the first few pages, thinking they've got the gist of it. i certainly would hope that that would not be the case, but given the average person's attention span...

One of the greatest reliefs for me was finally understand my bizarre and disturbed behavior as a child (for which my parents (at least in part) hated me). My whole life I wondered what was wrong with me. As a teenager I found the description for Depersonalization Disorder-- that was the closest match I had yet found, but it did not explain my behavior as a child. AS explains that, and also my persistant friendlessness and loss of friends I did manage to keep for a while. And other things, the list goes on. My acceptance by teachers for being "smart" and my rejection by them for being "weird." Pulled in by one hand while pushed away with the other. Etc.

Who will be the supreme diagnostician?

You? Someone else? A hired expert?

Ultimately you have to take people at face value and accept them as they perceive themselves to be; it's only a message board, after all. If people are trying to fleece the gov't for benefits, then maybe there is cause for umbrage. But here? Why ostracize?

In any social group there will be a push to tell people they don't belong. In this sense we act like NTs, when given opportunity, seeking the animal to be pushed from the pack. What better way to push them out, than to question their very reason for being here?

If there is a sense of pride in me, it is because I finally feel like I belong to something, though this in itself is an illusion as the nature of AS is to belong to nothing. I will always be an outsider, always unreachably "inside" myself.

I don't know that being autistic always means not belonging (although it often means not belonging in the usual places), but I totally agree that there's really no good reason to run around questioning why people are calling themselves autistic, unless they're demonstrably not, or demonstrably lying about something. (Like the 40-something woman who claimed to be a 25-year-old non-speaking man.) I mean, sure, yeah, some people have less difficulty than I do with certain things, and some more, and some both at the same time, but why should this bother me?

Strange post. You're trying to turn aspergers into a club. I don't feel anyone should justify themselves to you.



I don't think "real autistic"'s lives suck at all. We all get that same buzz when absorbed in our favorite activites, I don't think that enjoyment could be taken away purely because some of us can't speak /read/etc. I just think that the more intelligent the autistic person, the more complex the favorite activity that's needed. Either way we're completely self absorbed.

Don't get panic now, but I heard from a Swedish aspie that isn't member of this site, that they are trying to merge Asperger's into HFA!! !

for the second time, i can't seem to locate the part where i allegedly say that 'autistic people are supposed to be miserable'...

anyways, i would still argue that indiscriminate diagnoses are somewhat problematic. for one, i believe that it shapes and informs - or misinforms - the public perception of autism. stereotypes abound regarding various syndromes, disorders, or whatever term one uses to describe a state: people with chronic fatigue syndrome are often dismissed as being 'lazy', people with asperger's are often accused of using the label to account for one's 'selfishness' or 'inappropriate behaviors'. while a reasonable person would readily concede that the preceding are ill-informed stereotypes, i believe that the stereotypes originate, in part, from encounters with people whose diagnoses are at best 'questionable'.

also, being somewhat marginalized or of a minority is, in and of itself, fraught with complications. one example would be the phenomenon of 'wiggas' (that is, white people pretending to be black): few would deny (at least in the united states) that black people still face considerable discrimination - it's one thing for a white person to be appreciative of black culture, it's altogether something different when a white person claims to identify so much as to say they 'know what it's like'. that's just ridiculous. as a musician, something i seem often to encounter is the phenomenon of 'slumming' (that is, affluent people adopting the styles and mannerisms of poor people): it's one thing to 'dress poor', etc.; however, i've known people who are always claiming to have no money, yet when something comes up and they really need (or just want) money, somehow it 'magically' appears. that is both annoying and a little offensive.

i agree that it is wrong to fault a person if all they really want is to somehow belong or relate, and i'm sure that is probably most often the case. but every sort of 'distinction' has it's merits and it's liabilities - i'll say this a third time: i am not suggesting that 'autistic people are supposed to be miserable', but one cannot deny that there are certain obstacles that autism presents. (i am a chronically depressed person, i tend to see the worst in everything; at the same time, i readily acceded that autism has been an enormous asset as pertains many things for me: music, writing, working with animals, etc.) as in the preceding examples, i do think there are many instances in which the label 'autistic' is so casually applied, and the very real (potential) liabilities intrinsic to autism are overlooked or ignored. and, in my opinion, that only serves to obfuscate the broader understanding of what autism is.


edit: i agree that i am perhaps a little too dismissive, and sometimes do not take into account that autism is a 'spectrum' phenomenon. a number of years ago, i was living in north carolina and i went to a neurologist through a public health program. i've had a few grand mal seizures, but mostly i have partial complex seizures, absence seizures, etc. the neurologist denied that there is such a thing as a seizure which involves only partial or no loss of consciousness. i believe that hughlings-jackson (i believe it was him, perhaps i am wrong) identified and named such seizures over 120 years ago! likewise, i'm sure that there is a much broader understanding of autism than i often accede to. i simply believe that the diagnosis is often made without a very thorough investigation of the patient.

You give a lengthy description of your early life, including physical ailments directly and indirectly related to being autistic. You finish with this statement. The consensus seems to be that you think "life has to suck to deserve this diagnosis". You also falsely correlate overprescription of meds with overdiagnosis of ASDs.
The lack of autism research until very recently leaves a lot of questions about those of us who went undiagnosed or misdiagnosed. It also asks questions about our historical past, how autism was treated in our families before it was given a name or when it was fairly unknown.
For my family, "boasting" about autism is more about learning how to cope without meds and therapies, not force-feeding NT mannerisms when they aren't natural and understanding our relationship with each other. When I have teachers and NT family members pushing meds because they think that what autistic kids need to function, I will fight to teach my son how to put up with them.

Re: seizures, I've gotten the same kind of crap. My seizures are mostly complex-partial and absence, I've also had some atonic seizures and some myoclonic seizures. (And nobody seems to have ever heard of atonic seizures either.) The atonic seizures -- in which you lose all muscle tone suddenly and drop to the floor in a way that looks to observers like "faster than gravity" in a way even though it isn't (but there are no convulsions or anything like there are with tonic-clonic seizures) -- were written off as anxiety for a long time, even when I was having them every five seconds. Let alone the less "obvious" kinds like complex-partial and simple-partial.

It's the same for everyone, autistic people included. Sometimes life sucks. Sometimes it doesn't.

I wanted to add earlier that your complaint that there is an overabundance of diagnoses, "indiscriminate" amount of Asperger's/ASD. I don't see the evidence of this, in fact, have seen the evidence that it's been underdiagnosed. I'm probably simply Asperger's as I met developmental milestones as a young child but was apparently socially stunted, with obvious clumsiness and pragmatic speech problems (I have other traits that were assumed to be personality faults). My husband, however, had the same exact developmental delays as our son (so far) but was never diagnosed with anything-nor was he placed in a special ed program. He assumed his social/psych problems were due to PTSD as he was severely beaten at 4-5 years old. We even resisted the idea that our son's delays were abnormal because my they so closely matched my husband's. My son was diagnosed autistic-at 3, he was considered moderate to severe, at 5, "high functioning".

It's true that autism may be a default diagnosis for the time being, until we consider it a personality variation, or find other causes/reasons for autistic traits. I know an 8-year old boy who had a stroke in-utero, he couldn't be classified or considered for any particular disability except for "significant cognitive impairment" for years. Then, as he gained communication tools and his personality burst forth, he most closely resembles autistic. Without that classification, his family wouldn't be able to find resources to further help him communicate and learn.

So, it's not just the "higher functioning" diagnosis that may miss the mark, it's the "lower functioning" diagnosis too. But it helps us get the resources we need and find the community we belong to.

I think I'm aspie beacause, I had a lot of social problems when I was a child.

Also, I had spelling problems, with the pronouns, I changed single first person for second person (If I wanted to eat, I spoke "you want to eat", for example) My kindergarten teacher said to my mom I was rebel and insubbordinated, that I had a behavior problem. I didn't talked in classes with the other kids, I only talked at school when my mom arrivesfor me.

But the teacher didn't know I had special abilities for a child of my age (I learnt to read almost by myself, and I had some basic math’s abilities).

And that was the beginning of my school life

octavian, get directly to the point.

Are you accusing the more than 50 percent of memeber that are pretending to be autistics/aspies?

A great part is probably pretending or believing that they have Asperger's. I'm diagnosed, but I sometimes doubt myself to be a "real" Asperger...

Yeah, I don’t think people should have to justify themselves to you either. I think someone’s diagnosis should be between them and their doctor. And if someone diagnoses themselves what’s the problem? It’s not like its official.

What do you mean it has become fashionable to have AS? I never even knew what it was till this year, plus it’s not exactly a good thing. And as for people having to have symptoms in child hood and not suddenly get something I think people who are diagnosed do have symptoms in child hood, it’s just they don’t figure out what’s wrong with them until they are adults.