“I’ll call a kid a zebra…”: Recognising “Fashionable Autism”

48:365 World Autism Awareness Day

Image by mattbeckwith via Flickr

People really don’t like being told that the numbers of autistic diagnoses are rising because it has become “fashionable.” It elicits passionate outcries that autism is a genuine condition, and there is genuine suffering going on. And leads to people – quite rightly – demanding evidence that it has become popular in a way that has led to incorrect diagnoses.

However, pointing out that a growing number of cases of autism aren’t actually autism, is not the same as claiming it isn’t “real”; it’s just the claim that some of the time, autism is a useful label to achieve certain ends seen as more important than an accurate diagnosis. Furthermore, there is evidence and facts that strongly suggest an increase based around such false diagnoses. I will expand on that below. Before I go further I want to acknowledge and explain the depth of emotion you inevitably see in response to professionals who point out this fad-nature of autism diagnoses.

Parents of autistic children get used to having to defend themselves and their children from the ignorance of lay-people, who think there’s nothing wrong with their child that a bit of discipline wouldn’t fix. There are also a large number of vocal people out there who deny autism is a legitimate diagnosis in any situation. So when we see professionals pointing out that there are instances of autism that aren’t really autism (and that is in part responsible for the rise in autism numbers), those well-meaning and passionate parents of genuinely autistic children, react the same way that they would when faced with people who out-right deny autism or attack their child’s diagnosis. It’s no surprise that the common response by parents is “come look after my child then, and tell me there’s nothing wrong with him.” That is an understandable reaction to someone claiming autism doesn’t exist or an individual’s specific child isn’t autistic, but an entirely confused and irrelevant response to the claim that autism is over-diagnosed because it has become fashionable.

That word “fashionable” or “fad” is what often gets the heckles up: How can it be fashionable to have a severely challenged child who has objective problems that stay with them a lifetime, despite every intervention? Problems that can even sometimes be identified by differences at a genetic level? That seems a perverse claim. And it would be a perverse claim, if it was being used to deny the suffering associated with autism, or being taken as a claim that people always enjoy having a child with autism. But fashionable in this context is referring to a number of easily observed trends: Clinicians that purposefully label a child “autistic” when they are not, because they (for example) want the best services for that child, and individuals who proudly self-identity as autistic because the term has become equated with superior intellect and creativity, while also explaining (or excusing) other (less savory) aspects of their personality and life-style.

Indeed, it seems that these sorts of cases are what Allan Frances is referring to in his much-attacked recent article, “The Autism Generation:”:

The most likely cause of the autism epidemic is that autism has become fashionable – a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.

This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.

So where is the evidence of this “fashionable autism;” of (at times purposeful) misdiagnoses and over-diagnoses?

Yes, we all know of people who self-identify as autistic because they think it’s trendy and somewhat amusing to do so, because we all know people who think they’ve got whatever the buzz is lately. They’re the same sort of people who think they have the latest virus because it’s on the news a lot (even though they just have a cold). Not just hypochondriacs; perfectly normal folk who start seeing themselves in a different light just because they keep coming across the same topic and start to self-identify. “I’m sad” becomes “I’m clinically depressed” (even though they never seen a professional about it). “I’m fat” becomes “I have big bones and metabolism problems” because that’s the in-thing to say. This is not the same claim that no one is ever clinically depressed or no one ever has metabolism issues, or that the associated suffering of the genuine complaints is untrue. It’s just that some people are highly responsive to fads, and these sorts of fads appeal to the idea that our problems are not of our own doing, some external or uncontrollable force is victimizing us. It shifts the blame.

I have also met and heard of the parents of children who neglect or even abuse their children (depending on how you want to characterise their parenting), and then label the predictable resulting behaviour as autism or Aspergers. Of course the vast majority of us don’t do this, and have genuinely autistic children who we passionately parent with the sort of dedication that leaves us physically and emotionally exhausted everyday. But some do. There are ass-hats out there who genuinely refuse to parent or discipline their child, and then seek an external or uncontrollable explanation to place the blame on, instead of their own failings. Thinking there is no one who would ever do such a thing, is like believing no one would ever kill or rape or steal; just because something is unthinkable and immoral to you, doesn’t mean it doesn’t happen. Fact is, there are some crap people out there, and some of them are doing the sorts of things that give the rest of us a bad and undeserved name.

But are there professionals who would support and encourage such mis-diagnoses? Yes. The same way there are doctors who diagnose precocious puberty because it matches a theory they have about autism and supposedly justifies an expensive treatment plan. The same way doctors variously lose their licenses because of dodgy and unethical diagnostic (and other) practices. But it’s not just professionals pandering to an eager audience; some of them also actively seek out those clients and generously hand out diagnoses when they haven’t otherwise been requested or suggested by the parents or individuals concerned. Once these practitioners get a name for such liberal diagnoses, word of mouth attracts an ever-growing clientele who are positive their child deserves a diagnosis that has been turned down time after time at other practices.

Indeed, I have written about such a local doctor before. He is the go-to guy for an autism spectrum diagnosis, and I’ve heard from many parents who are positive their child doesn’t have autism despite his diagnosis that they do. Parents who research and attend meetings and read books so they can better understand their child, and find out their child simply doesn’t match the information every other professional body is telling them about autism.

It’s not just dodgy doctors who would do such things (doctors perhaps seeking the money and profile that comes from being known as the go-to guy). Perfectly good and arguably moral doctors, will also very often give a diagnosis for reasons other than accuracy.

Those good doctors are like the ones spoken about in Grinker’s book “Unstrange Minds.” A quote from one such doctor in his book: “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.”

Grinker’s book outlines the growing and impressive supports in place for children with an autism diagnosis (note though, as a side point, that “growing and impressive” does not equate with “adequate”). Often the services that would suit an autistic child’s special needs, will also suit a child with a different diagnosis, but because of particular classifications or funding they are better off going under the head of “autism”: “..if a mentally retarded child without autism is incorrectly given an autism diagnosis, he or she might actually get better treatment than would be possible under the correct diagnosis.” Or the child has minor problems that fall short of the autism spectrum, but would benefit hugely from access to the services available to autistic children (such as extra individualised tuition and behavioural management strategies.)

Grinker also explains the variations in diagnosis from one clinician to the next: “They make the diagnosis that they believe is most helpful for the child, but are not slaves to DSM criteria. This is why you can take your child to four clinicians and conceivably get four different diagnoses.” It is easy to see how, with the increase in awareness and services for autism, that there could be a significant shift towards “autism” when trying to choose the “best” diagnosis for an individual child.

Grinker refers to a study in 1988 about ADHD, which showed notable diversity in the diagnoses given by clinicians for the same group of children, “The clinicians agreed with each other only about 25 percent of the time…“. (Anyone interested in reading further about these variations, and how funding and services can lead to an inaccurate increase in diagnostic numbers, would be well advised to read the book, it really is an eye-opener. All of this feeds into his wider argument that we are not experiencing a real “autism epidemic.”)

So there is evidence for the inconsistency of diagnoses between clinicians, meaning a diagnosis of autism might not always be “objective”, particularly at the edges of the disorder. On top of that, there is actual incentive in some countries and regions to pursue a diagnosis of autism. It’s also easy to understand why some parents and individuals prefer the label “autistic” over comparative terms (“naughty”, “aggressive”, etc), and that various clinicians for various motives will accommodate those people. Add to that the increasing awareness and de-stigmatisation of autism, and it’s really quite easy to see autism in terms of being “fashionable” and that fashionableness impacting noticeably on diagnosis numbers.

How much all these factors play into the actual increase, is unclear and no doubt hard to establish. Made all the more impossible by the number of other factors also feeding an increase: Increased awareness, increased understanding, changes in the way autism is defined and counted, and real increase in incidence. Trying to figure out which of those factors is dominant, or the percentage of relevance of each to the whole in relation to each other, is a challenge (to understate it hugely). At the very least, there is good reason and evidence to not simply dismiss the notion of over-diagnosis and mis-diagnosis.

So when we see someone pointing out that autism is popular or fashionable, it’s a good idea to put aside the (fully understandable) emotional and defensive reactions that we’ve developed as parents of children who are frequently misunderstood. Try to clarify whether the person is denying that autism exists. If they are not denying its existence, and merely pointing out that diagnosis numbers have increased – even for children who are borderline non-autistic or simply not autistic at all – then I think that claim has to be looked at seriously. There does appear to be evidence for shifting diagnoses depending on who’s performing the diagnosis, and evidence that clinicians will choose a diagnosis based on services provided rather than what precisely matches the official manual they’re meant to be working from. The quality and quantity of that evidence is something of interest, no doubt. But the existence of the problem, is not in doubt either.

About these ads
Gallery | This entry was posted in Autism Awareness, Diagnosis and tagged , , , , , , . Bookmark the permalink.

24 Responses to “I’ll call a kid a zebra…”: Recognising “Fashionable Autism”

  1. Sharon says:

    You know I considered this angle prior to writing my own blog post. And I agree there is no doubt some children are given the dx in order to access services they might not otherwise be entitled to, and I also acknowledge the other factors you mention having a part to play in increasing numbers. But I simply do not buy the idea that these cases account as the main reason for the increase, and this is the premise that Allen Frances appears to be making. As I blogged I am yet to meet any child, or adult for that matter who does not fit the criteria set out in the DSM, not saying that they are not out there, but I’m certain they do not account for the majority of newly diagnosed children. And if he thinks this is the case then I would like to see some research.
    There was a way of discussing this issue without sounding condescending and disparaging to many parents and adults with Autism. He failed to do that, and in the process showed unnecessary disregard for the consequences of making said statements.

    • Fair comment Sharon, and I must say that I strongly agree that the “fashionable” aspect is highly unlikely to be the dominant cause in the increase. It makes much more sense that this would primarily be down to changes in the diagnostic criteria (in my opinion, though I know that’s hardly the accepted wisdom either). As Grinker says, it’s like there was a “perfect storm” of a wide range of factors that lead the the supposed autism epidemic.

      Thank you too for your own thought-provoking post on the issue.

  2. usethebrainsgodgiveyou says:

    Very good post. Thank you for taking the time to write it.

    http://thecoffeeklatch.com/group/dr-allen-frances/ Marianne Russo (from memory, don’t quote me) interviews Doctor Frances. Over and over I heard him say, it’s not that the kids aren’t difficult to raise, but a label? Our kids are harder to raise, no doubt.

    Another consideration, much like the diagnosis of ADHD, is that a generation of kids is being labelled AND drugged, and the numbers only seem to be increasing. Thus, the “shadow syndromes” become paydirt for the drug industry. Which is fine if it is helpful, but the studies, even long term, amount to no longer than a year. Not a lifetime. One of the most freeing aspects of homeschooling for me was getting rid of the Ritalin. The rest was gravy.

    Recently, I recalled what the only neurologist my son saw had told me thirteen years ago. He said he had Semantic-Pragmatic disorder, and that it would probably be manifested in a learning disorder. He said he was NOT autistic, that he interacted with him, although somewhat begrudgingly. His pediatrician labelled him ADHD. It was the schoom.l that gave him a label of Autism, honest to God I believe because it paid better and allowed for services. It was based on the CARS inventory I completed. He was special ed pullout, PRN…95% included in the regular classroom.

    Now, I want to tell you how stupid I am. I KNEW he was dyscalculaic, and dysgraphic, with my special ed degree (although it was in MR). BUT I didn’t know that math and writing difficulties were considered Dyslexias. Eighty percent of Dyslexias are in reading, but not all. Here was the learning disability. Why would I bring this up?

    Dyslexia’s are Learning Disabilities. Tough to overcome…life changing…disabilities…but NOT mental illness. We are labelling an increasing number of children as mentally ill. And it may just be that they learn differently. Thank God the kids got the common sense to look for answers ( like Wrong Planet), or they’d really be &^%$#@!

    Oh, and with Simon Baron Cohen’s tests, both I and my husband are mentally ill. As are half of my family. I figure for us, it’s one in two. Now, there is a lot of giftedness and high achievement in my family, too. If we had known we were crazy, would we have done so well? Would our minds have survived a drugged childhood?

    Maybe it’s just me, but I think we need to turn Aristotlean, and start thinking with our hearts.

    • Thanks for your interesting and thought-provoking comment. I’m tempted to now write a post about the impact of labeling. I’ve written before about the importance and consequences of getting a diagnosis (which I think are quite positive on the whole, mainly because it provides more options and more understanding, sense of community, etc), but I need to think further about those other consequences you bring up – such as when it lead on to medications and the notion of mental illness rather than (for example) an appreciation of the realities of learning difficulties. Lots to think about there, thank you.

      (And for some reason I can’t get the sound to work at the interview you’ve linked to, I’ll try again later though.)

  3. usethebrainsgodgiveyou says:

    It was not the schoom.l that gave him a label, but the school. Damn laptop!

  4. MJ says:

    I think the thing that I find most annoying about the whole argument that autism is being over diagnosed is that there is no data supporting the statements. There are plenty of anecdotes floating around, like the one you mentioned about a local doctor, but no one has taken the time to actually investigate the issue.

    A 1985 study of ADHD doesn’t qualify as evidence that the same is true of autism in 2010. There is a large body of evidence about how well various diagnostic instruments for autism do when they are given multiple times by multiple people. And in many of the larger studies, such as the Korean one, researchers actually test how often their various clinicians agree with each other. Typically, at least what I can remember off the top of my head, both of these rates are north of 90%.

    Its not like it would be a hard think to test either. Pick a reasonable size group, like a school distinct, and given all of the children with a medical/education label of autism the ADOS/ADI-R. That will give you a pretty good idea of how often the label is overused (although it could pick up cases of autism “recovery” as well).

    Strangely, even when studied do exactly that and give the ADOS/ADI-R to large groups of children – like the recent twin study did – you find very few children who don’t retain the label. Maybe there is a bias in the study populations, but I would think that if there was a huge population of the over-diagnosed they would have been seen by now.

    • The evidence provided in Grinker’s book is of particular practices of clinicians; that they do not doggedly stick to criteria if providing a differential diagnosis will provide better support for a child, and they do not always reach the same diagnoses as each other. Neither of those observations are absurd or unpredictable. The existence of those practices is evidenced by their own admissions in this context, since what we want to know is whether these practices are taking place, and they are openly admitting they do such things. The question then is the extent and consequences of it.

      There is a very real difficulty in examining claims of wrong-doing by doctors, in terms of over-diagnosis and misdiagnosis. First, you need people to be concerned enough to actually lay a complaint about it (rather than just talk to friends and family), and then you have to have a way of examining the diagnoses of otherwise happy customers (the ones who accept and are comfortable with the diagnoses they got, and are therefore unlikely to seek a second opinion or want their diagnosis to be challenged, particularly when a diagnosis comes with financial support). I of course understand that that doesn’t preclude a scientific investigation more generally of divergent diagnoses, the problem is controlling for the clinicians who will continue to do these practices regardless. And like I said, there clearly are those who practice in this way (such as the local doctor who allegedly labels every gifted child as Aspergers). For each who openly admits as much, there will be many who stay silent or simply don’t realise they are doing it at all. This is hardly surprising.

      The thrust of my piece was that these practices are happening, and there is good reason (though not necessaily moral reason) for it happening. It isn’t just for autism either, there is an art-form to things like DSM and symptom-based diagnoses, it’s the nature of the thing. To deny that there are misdiagnoses and over-diagnoses occuring at the clinical level (which is not the same, I should add, as overdiagnoses occuring at a population level), would seem a tad naive (no offence intended to you personally, there are others who out-right claim that there are no misdiagnoses or over-diagnoses occuring).

      Edit: Also, majorly important point that perhaps wasn’t made strong enough in my post (though the zebra comment did mention it: “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.”): Grinker talks about the difference between the accuracy sought and observed at researcher level, versus that at clinical level. You can’t simply cross-apply accuracy stats from scientific investigations about prevalence of autism (for example) to how clinicians behave and diagnose within practices.

      • MJ says:

        Of course there are times when a diagnosis is made that is not appropriate, I don’t think anyone would argue that and I am certainly not saying that.

        However, the scope of the problem is an almost complete unknown. Are we talking about half of all cases or are we talking less than a percent? My guess would be a small number of cases, otherwise studies that re-evaluated existing populations would be finding these kids all of the time.

        Grinker’s book – like any book – is not evidence of anything except his option on the subject. Books like these make interesting reading but should not be taken as scientific fact without outside collaboration.

        You also have to be very careful that the author isn’t biased in what he/she is presenting. Grinker has some extreme theories on autism prevalence and I would think that would color what he says and presents in his books.

        You may not look at it this way but the arguments for over-use of the label are almost the exact same arguments that a person who has heard stories about vaccines and read Wakefield’s book would use. Before you jump and say that but Wakefield did all of these other things and that has been disproven, just think about how the argument is constructed –

        anecdotal stories + book + some studies that seem like they might support the idea = idea has merit.

        My response is the exact same there as here, show me the data.

        I am sure that there might be something to the idea that clinicians are purposely mis-diagnosing but I am not willing to take the assertion that this is a major problem at face value without collaborating evidence. Just because something can happpen does not mean that it does or does often.

        The ideas that Grinker has put out, mainly that autism isn’t really becoming more common but the numbers are increasing because of social factors, haven’t been holding up too well in the face of recent research.

        So I have to wonder just how common this problem is. Are there a large number of children who receive an autism diagnose because it is the fashionable thing to do or is this just yet another myth about autism?

        The heart of the question is whether one clinician assigning a label grants access to services or whether multiple clinicians and therapists have to conspire together for the process to work.

        In my experience, the idea that one clinician assigning a label provides access to services just doesn’t hold water. After the initial diagnosis, my child have had to be re-evaluated by each and every group that has offered them services. Even at an extremely high level, that is a lot of evaluations by a lot of different groups –

        Early intervention, some version of the battele.
        Speech therapy, some screening test.
        OT, some screening other test.
        ABA, an evaluation by the agency’s psychologist
        School district, an evaluation by the school’s psychologist
        The two studies we have been a part of have use the ADOS and the ADI-R to confirm the diagnosis.

        The ABA therapy actually involves four psyc evals a year and the state I live in reviews each of the evals (in writing and in family interviews) and determines whether services are still warranted.

        Maybe my experiences are very different than everyone else’s but I don’t see how a completely bogus diangosis is going to stand once the family tries to use it to access services. With the amount of money that these services cost it seems like every group involved is double checking to make sure that the children actually qualify for services.

      • I think you’re picking up on a very important factor there: How services are provided.

        Where I live, we got the diagnosis, and then there was no extra screening for the “correct” diagnosis for ST, PT, OT, EP; they just respond to the problems presented regardless of its label. They do assessments of need and issues within their disciplines, but not to identify whether he has autism or some other diagnostic title per se. Responding to the symptoms as match their speciality, rather than the diagnosis name. The special needs school he attends required assessment from the government that his special needs were of a high enough level, they independently assess the need rather than the precise diagnosis, since – like most services I’ve interacted with for my son – they are responding to the child’s needs rather than the title at the head of those needs.

        I would have expected that to be the norm, except perhaps for special schools or services that only take autistic individuals because of their autism rather than because of the specific and invidualised needs or symptoms presented (such as the ABA group we attended through the local autism charity, though even then they didn’t reassess his diagnosis, just required one first. It would be cumbersome and expensive to require a re-diagnosis for each service).

        Of course the therapists and school and other service providers take into account the nature of autism in how it impacts on what they are trying to teach, but they’ll still provide the help even if it wasn’t called “autism” because the need is there; the only thing that gets in the way is funding, which is where the requirement for the “correct” diagnosis comes in (which circles back to the discussion in my post about how some services are provided dependent on getting the correct label. I’ve attacked these issues before too in a post about the consequences of making autism families compete for governemnt services.)

  5. usethebrainsgodgiveyou says:

    What’s getting lost in this discussion is, THIS was the guy who wrote the book. I guess we believe what we want to believe.

    • I think that’s an important point. Particularly because what he has to say is worth considering and trying to understand, considering his past personal involvement with the way diagnoses are defined and the intention behind their definitions, then examined later in light of how they were actually used at the front-line. I think it’s important to hear from people with that level of involvement and experience, even when we really don’t want to agree with them.

  6. usethebrainsgodgiveyou says:

    Just an aside…my husband and his brother were labelled “retarded” by the kindergarten teacher 50 years ago. He works for the National Archives, and his brother is an accountant.

    Kids develop very differently. There is no normal.

    • And in converse, I have had friends labeled as “gifted” who went on to do very little.

      I’m going to disagree with you about “there is no normal”. “Normal” is relative to whatever you are looking at. There is “normal” speech development for example, which helps us identify when something has gone wrong (a hearing problem for example), or there is normal behaviour in a given situation (used to identify when behaviour has been affected by drugs or abuse, or when someone is in extraordinary distress and in need of assistance). “Normal” is a very valuable notion, that helps us to identify problems that need addressing, though it always comes with a context, and we must be careful about responses to the abnormal (do we accept and accomodate the variation, do we fix it with medication, etc). There is “normal development”, and it’s an important notion, that helps us to identify problems before they become major issues for the child. The correct labeling of something as normal though, and the correct range for the normal, must be considered carefully. But those are not reasosn to abandon the notion or importance of identifying what is “normal.”

      I expect we’re going to have to agree to disagree on that point, but suffice to say I do appreciate your point, I just disagree with the broadness of it.

  7. RA Jensen says:

    Francis Allen is not the only one subjected to frivilous attacks by the nuerodiversity crowd. Leo Kanner, who wrote the first article recognizing autism in 1943 (1) also, in 1965 joined Van Krevelan a Dutch autism researcher and another icon in the history of autism, had the following observation regarding the ‘abuse of the diagnosis of autism’ that ‘threatens to become a fasion”:

    “While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic” (2)

    (1) Kanner L. Autistic disturbances of affective contact. Nerv Child. 1943 2:217-250.
    (2) Kanner L. Infantile autism and the schizophrenias. Behav Sci. 1965 Oct;10(4):412-20.

  8. Leona Byrne says:

    Something that is quite simple but has been overlooked as I read/skimmed these posts… is “Autism” is increasing due to it being a spectrum of diagnoses’…just because someone says their child is “autistic” they could actually just be on the spectrum … but saying “my child is on the autistic spectrum” would be cumbersome…. so yes “autism” dx is increasing… but so too are the number of dx included on the spectrum. What is also overlooked is that even the dx of “autism” has several secondary words following.. typical, non-typical, a-typical, high functioning, behaviour difficulties etc…. but all still “autistic”. I think when your child has sever autism it is easy/normal/common, to assume those with “less” autistic features to be just looking for a dx to access funding….harsh sorry… but in essence… they have just as much right to access services as a person with sever/classic autism. I know the doctor you refer to… i know very well the tests they/he asks you and teachers to fill in, and I know his reputation… but i stand firm that he diagnoses ASD to those who are in fact on the spectrum… not just at the lower functioning end of the spectrum. I don’t make comments on here very often, because i know you from a group you often refer to, which as the founder, i sometimes get offended, but also because I am not as well written as you… but sometimes I just get a little too wound up…and feel like making a comment…. just to remind your readers… that there are many levels of “autism” and sometimes referring to only classic autism, negates the other diagnoses….. which is not fair/appropriate. I enjoy your blog very much… and I enjoy questioning my beliefs and opinions…..and thoughts on your topics…. I really miss debating from high school actually… i would love to have an intellectual banter with you… but sooo not game now!! hehehe x

    • Hi Leona,

      I choose to never link or refer by name to the group you helped found, because I believe in the benefit of being able to talk freely about experiences whilst not hurting those involved. I never refer to you by name either, in fact, I refer to no one by name in these discussions, and there’s a good chance the doctor you have in mind is not the same one as I am talking about; it would not surprise me in the least if there were multiple doctors operating in that fashion, and that perhaps the doctor you know of is not one of them, anyway. Your group is also not my only experience with ABA, so don’t assume that everytime I mention ABA that I am solely drawing on that experience.

      Also, the comments from my readers, and my own posts, regularly and expressly acknowledge that “autism” is often used to refer to the full spectrum, indeed every single time I write “autism” without the word “classic” in front (or other clarifier), you can assume I mean the entire spectrum. If I mean Aspergers, I say Aspergers. If I mean PDD-NOS, I say so, etc. When people comment, they use the same short-hand, if I spot a use that is not consistent with the spectrum usage, and I think it’s casuing confusion, I will ask the commenter for clarification.

      If something is upsetting you because you think it’s wrong or an unjustified attack, please do comment. Chances are it’s a misunderstanding; that there’s nothing there to offend you in the first place. And if not – if there really is reason for offense – then you are welcome to speak up and change minds with your own (far more superior than my) experiences.

  9. Tracy says:

    I’ve just came across this article while looking online for “damage done to children by telling them they’re autistic when their not”. My boyfriend’s ex-wife does just that by constantly telling everyone & anyone who will listen in person, on line on her blog & others’ blogs, as well as their 4 boys themselves, that they’re “on the Autism Spectrum”. She claims the oldest is ADHD/Autistic, the next has Aspergers & the 2 youngest are also Autistic. She seems to strive to surround herself with people on the spectrum, has dated a man with Aspergers & has even gone so far as to convince one of her son’s friend’s parents (the friend is Autistic) to pay for him & one of his brothers to go to an Autism camp with their son this past summer. Oh & did I mention she also claims SHE has Aspergers? Having spent a lot of time with these boys as well as hearing otherwise from their grandmother (a retired educator of 35 years who has experience with special needs children of all kinds) & everyone else who knows them well, I know they’re not. Yes, there really are “crap people” out there who for whatever sick reason tell people there is something wrong with her kids when there isn’t. The even sicker part to me is that she tells THE BOYS there is something wrong with them. No normal person does this. It’s unconscionable. If you ask me it’s damaging psychological abuse & can do nothing but hurt the boys’ self esteem & self image. Why would they try harder at school when they already KNOW there’s something wrong with them because Mom told them so & they can’t do it. We’d like to string her up.

  10. nikki says:

    This is an interesting post and grill feel good have to agree with most points. I just read Frances ‘ article too, and must say I am now stuck with his final statement where he says the new definitions of the DSM would include even more children/people on the spectrum.. from how I have understood the public discussion, many people feared the opposite? What’s your view on that?

    • Hi nikki, there have been studies that have supported the view that it will increase decrease diagnoses and will keep the numbers the same, I can’t recall a specific study that found the numbers would actually go up, but I do see how it could conceivably go that way, even more so considering the problems that have come to light in the final wording of the Manual. Keeping in mind that people have been speculating on what the DSM will say years before it was ever finalised, it’s hard to say accurately in advance what will happen to the numbers; now that the Manual and the precise wording is released, it becomes a watch, wait and see game I guess. It’s hard to take into account all the factors that can influence the giving out (or holding back) of a confirmed diagnosis.

  11. Chris says:

    Some of the problem with research on autism is that autism has yet to be scientifically connected to a cause. This imply that a screening/interview who, correctly, examine the behavioral symptoms may come to a conclusion of autism on a much larger group of people than may be both realistic and useful. The autism diagnosis does not require any specific cause and it is perfectly legal to give autism diagnosis to persons who show the behavioral symptoms as a result of severe child abuse as it does not exist any precise diagnosis of the consequences of child abuse yet. But the wise therapeutical choices in a case of child abuse may be very different from a case of genetical mutations, and so the cause becomes an even more important factor than the result of behavioral screenings/interviews to verify that a classification of autism is a wise choice. Research on autism (as well as clinical practice to an extent) seems all to often to ignore this issue.

    Much research are based solely on the behavioral symptoms ignoring the fact that autism still has no clear cause and as such the research done on autism may include a diverse category of human beings. As research on survivors of abuse has come to the conclusion that they satisfy the autism diagnosis based on a behavioral screening, autism research should maybe consider to add some of the screening for abuse/trauma when assessing its population. This would make it easier to delimit autism possibly caused by abuse from autism possibly having a biological/genetical cause; which in the future when autism is nosological connected to a biological/genetic cause and a new label of complex trauma/developmental trauma disorder or so is connected with abuse as a cause would make the research from the past much more useful.

    • Chris, you are deeply misinformed about the scientific studies on causes of autism, on the relationship between autism and child abuse, and on the nature of an autism diagnosis. It is hard to know where to start to put you right because there is just so much confusion and misinformation in the view you appear to hold, but I think if you read through the responses to the question on this page, it would be a good start to understandng where you’ve gone wrong: http://www.researchgate.net/post/Can_family_violence_cause_or_encourage_autism_in_children

      Please do further research into autism and how it differs from the results of child abuse, before further sharing your damaging perspective. You can otherwise cause a lot of unnecessary upset and damage to already vulnerable families.

      • Chris says:

        I may be wrong, but I have yet to read (including the thread you point to which did not say anything new to me) something which scientifically state otherwise (a scientifical consesus is not a scientifical evidence so, it only means that a given set of scientists share the same hypothesis). As a survivor of abuse and classificated according to ICD-10 with autism by a medical director in response to the behavioral symptoms presented, I have personal experience with the word damage. To be met with the expectations to take responsibility for the harmful actions of the abusers just because some of the consequences of the abuse turn out to be the behavioral symptoms (Cook et. al, 2005; Timimi, Gardner & McCabe, 2010; Walker, 2013) classificated as autism is not something which is healthy to me.

        Of that reason I argue for a better classificatory delimitation where it is a requirment for autism that it has a biological cause and where consequences of abuse has its own diagnosis; like in example complex trauma. Until then I would share the devastating consequences of taking all todays cases of autism as congenital, because I have experienced it and do not want any other survivor of abuse to experience the same.

        Bibliography:
        Cook, A. et al. (2005). Complex Trauma in Children and Adolescents. Psychiatric Annals 35(5), 390-398.

        Timimi, S., Gardner, N. & McCabe, B. (2010). The Myth of Autism. US: Palgrave Macmillan.

        Walker, P. (2013). Complex PTSD: From Surviving to Thriving. US: Azure Coyote Publishing.

        • Chris, I’m sorry for what you’ve been through, but it doesn’t change the fact that autism is not caused by abuse. Abuse may lead to some symptoms that look like autistic traits, abuse can affect the severity of autism, and some children have autism and have suffered abuse, but abuse in and of itself does not “cause” autism. A professional who can’t recognise the difference between behaviours that are a result of abuse and the condition of autism, and hasn’t performed a family history to investigate that possibility, is letting down the child. Most abused children do not have autism, and most autistic children are not brought up in an abusive family, there is going to be some cross-over just like there would be in any population, but no, abuse does not cause the neurological condition of autism. I’m sure you’re aware of the horrific and disastrous history that resulted from the now disproven theory that autism is caused by abuse, so I would hope you’d take more care in this topic, knowing what can result from such views.

Share your thoughts:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s