Autism: a public discourse blaming teachers and parents

by Ingrid Robeyns on April 1, 2012

In this first of a series of post on autism, I want to talk about the blaming of parents and teachers which has been going on in the Netherlands for a while. It’s not the most uplifting post of what I am planning to write over the next week, but I think it nicely illustrates why we need this Autism Awareness week in the first place. One of the things that I’m curious to find out is whether this is a particular Dutch phenomenon – I fear not, but don’t know.

One disclaimer before I start: I am giving here my analysis of public discourse, not of all discourse people encounter in their lives. I am sure many children with autism and their families receive great moral and practical support by their extended family, friends and neighbors. I don’t know of any studies on this, so am not going to comment on this in general terms. This post is about what people say in public settings – newspapers, other media, interviews, parliament, public gatherings.

In the Netherlands, there is a widespread tendency to believe that the increased incidence of children diagnosed with autism (and ADHD - they are most of the time taken together in this discourse which I think is problematic), and the increased number of children taking Ritalin, is not pointing to an increase among the ‘real’ cases. Rather it is due to society: the government which forces labels on kids if they want to qualify for help, the pharmaceutical industry who wants to maximize its profits, and also the failings of teachers and parents. Teachers (who in primary schools overwhelmingly are women) are said not to be able to keep order in their classrooms, and can’t deal with unruly children – so they requests parents to ‘get their children a label’, that is, to get a diagnosis, and then to request medication so that the children are easier to handle in class. Similarly, parents are said not to be willing to make enough time and spend enough energy on raising their kids (especially parents who both have jobs are blamed), and in order to restore their failed child raising, they resort to a medicalisation of their kids unruly behavior.

I have repeatedly read this argument, or heard statements to this effect ever since I started to pay attention to public discourse on autism and ADHD (which is, not surprisingly, when there was the first suspicion of autism for my own kid a couple of years ago) – often they were stated ‘in passing’ – a side remark in a column, a joke at a dinner table, a sneer on Twitter, or a politician who ‘has heard of such a case’ and thinks this anecdotal evidence justifies his political views. So yes, I am aware that this is my interpretation of the public debate and that my characterization of this public discourse is not based on scientific studies, but I can at the same time report that many parents I know, and parents and organizations that I follow on Twitter, share this view.

Basically the public concerns are these: the number of kids in special needs education are increasing; the number of kids in regular education who have a diagnoses for a disorder such as autism or ADHD and hence are entitled to specialized help, are increasing too; and the number of kids on medication are increasing. These tendencies cost the government and hence the taxpayers money; and since (some of) these increases are significant, many believe that surely this can’t be ‘natural’, but rather there must be some social forces behind it (either the manipulation of the pharmaceutical industry, or the failures of parents and teachers who should be able to get by without these kinds of special support).

Last December, one particular letter to NRC, a ‘quality’ newspaper in the Netherlands moved me to act. A reader wrote that the causes for the increase in the number of children diagnosed with autism and ADHD lies with society: schools do not want restless kids in the classroom and hence teachers want them medicalized; and parents would be “relieved” with a label, since “it lifts their duty to critically scrutinize their own parenting” (quotes from the letter, my translation). If you know Dutch, you can read my full piece here.

Unfortunately, it seems that when it concerns the issue of the increase of the number of cases diagnosed with autism/ADHD, every opion is taken to be as valuable as another, and people don’t always seem to consider how their stated opinions will be received by those about whom they are talking. Even some of my fellow academic philosophy friends talk about autism/ADHD (and other disorders, in fact) mainly or only in terms of ‘overdiagnosis’. Frankly, I was/am still fed up with this discourse, since it is only one part of the whole range of problems that need to be discussed, and in society at large it gets all the attention. If all the people who are raising their voice regarding ‘over-diagnosis’ would also speak up on issues such as how to make sure the waiting lists for diagnoses are shortened, that there are enough places in special needs education, and that parents don’t have to quit their jobs because otherwise they can’t handle the enormous care burdens (and management and negotiation of that care) that is often required for a child with special needs, I probably wouldn’t have been so angry. But now I was, and I still am.

In the Op-Ed linked above, I said, firstly, that there may be plausible explanations for the increases in diagnoses that allow for a genuine increase in the actual cases of autism (hence it may not all be over-diagnoses, but rather an increase in the actual number of cases, and hence a corresponding increase in the diagnosed cases); we should keep an open mind that this is possible. I am not a specialist on this, but will write a separate post on this question over the next week, since it would be very interesting to hear what the specialists among our readers have to say. I am not saying there is no over-diagnosis, and even less so that there is no misdiagnosis, which surely there is; and it may be plausible that some disorders are more easy to misdiagnose than others, as it is also equally plausible that some part of the increase can be explained by the fact that access to special needs education and specialized care are made dependent on having a specific diagnosis. My point is that above all, we need to be open-minded about this – yes, there may be over-diagnosis, but there may also be over-diagnosis in combination with many genuine cases that are not diagnosed (and where people could benefit from diagnosis!); there could also be reasons we don’t know yet why there is a genuine increase in the actual, real cases of people with autism. This is a complicated area, and I think we need to be open-minded about the possibility that there are many things we do not know yet.

Second, I argued that we shouldn’t always focus on the (alleged) over-diagnosis; there are also still many cases of people who effectively have autism, but are not diagnosed—yet we hardly pay any attention to under-diagnoses. Yet under-diagnosis (non-detected cases) can cause very serious problems, not just in children, but also later on in adult life (like constantly losing one’s job or having problems with intimate relationships or parenting, without being able to understand why). I have first-handedly know two cases of people who fit this category, and heard many more accounts from autism professionals, and many of these lives are tragic, and could be much better if these people were properly diagnosed and received the help they need. Of all the people with autism, I worry most about this group: children, youngsters and adults, who have no idea that they may have a form of autism, who have serious problems communicating with others and building social relationships, and who, sooner or later, run into serious problems in their private or professional lives. By always talking only about over-diagnoses, and suggesting that we have turned autism into ‘a hype’ (claiming the label when we don’t need it) we are not making it any easier for this particular group of non-diagnosed real cases to be helped.

Thirdly, I argued that the discourse, as it develops, is systematic for blaming individuals if there is a problem, rather than trying to understand what it must mean for a family with a child with autism/ADHD to live with this condition. Basically, a significant share of the wider public has no clue, and rather than trying to better understand, they start blaming parents for the ‘socially unacceptable’ behavior which does indeed often characterize small children with autism: can’t these parents just raise their kids properly rather than seeking expensive specialized psychiatric help? Blaming parents is only adding insult to injury, since what parents of children with autism need is understanding, good advice and support.

A letter sent to the newspaper (for which the editor later called me up to apologize that they did publish it since it was so viciously ad-hominem), accused me of not having any authority to speak on this matter since it could not be deduced from my CV that I had any scientific (medical/psychiatric) expertise on this, and basically repeated the same mantra: there is nothing (medically/psychiatrically)’wrong’ with those kids, we just need to raise and educate them properly. But I also received a large number of letters by parents, teachers, and care professionals who recognized the lack of understanding in society, and the blame being put on those caring for kids with autism. I have written a dozen of op-eds in my life, but have never received such an amount of endorsing reactions. I think that’s telling us something.

That’s why we have Autism awareness day/week—to raise awareness and hopefully in this way increase our support and understanding for children and adults with autism as well as for those who care for them, in a world in which they are much of the time not well understood, and insufficiently supported.

{ 39 comments }

1

derrida derider 04.01.12 at 9:02 am

I have an adult son who was once diagnosed with ADHD (and thence Ritalined) and then had the diagnosis changed to Asperger. He is definitely “different” and suffered (and suffers) a lot from both adults and children because of it, but with a combination of lots of special schooling and maturity his disability abated somewhat (or rather he’s adjusted himself to the world and learned to work around his limitations, whichever way you want to look at it). He’s now nearly finished uni and on track to become an academic (academia being more tolerant of oddness than most employment). I mention all this just to give me standing to speak.

I’m in between on this issue. A lot of kids who would once have just been labelled either “unruly”,”difficult”, “badly adjusted”, “antisocial”, or just plain “odd” now get labelled with either ADHD or some form of autism (usually Asperger) so there has been a change, and this medicalisation has both big downsides and big upsides.

The upsides are that they now get help to achieve their (often considerable) potential, and it does reduce some of that disgusting blame game (yes, I’ve very often overheard things like “give me that child for a week and he’d be a different boy”. No he wouldn’t).

The downside is, firstly, the medication (our experience with Ritalin was not happy). Secondly, the label emphasises the differences in peoples’ minds – it becomes easier to make them the “other”. Thirdly and relatedly, it does not actually make people more tolerant of difference or more willing to see strengths in differences (eg my son’s incredible memory and unique way of seeing the world). They just blame nature instead of parents, but in either case they expect conformity.

2

Philip 04.01.12 at 9:10 am

In the UK there is a very similar discourse but I would say more with things like ADHD or mental health than autism. I remember a fuss in the media a while back about middle class parents getting their children diagnosed with specific learning difficulties, like dyslexia, to give them extra support and allowances for exams. The implication was that the kids were being misdiagnosed and didn’t need the extra help but it was a ploy by parents and schools to boost grades. I don’t have much experience of the school system at the moment but as far as I’m aware kids would need to be assessed by a specialist and there is a range of rigorous and standardised tests that would be used so I would imagine that misdiagnosis is quite rare. For me the focus should have been a lack of awareness and opportunity for poorer parents to have their children assessed which would help level the playing field.

3

Scott Martens 04.01.12 at 9:22 am

Ingrid, I agree with you substantially, but I don’t find your approach to making the case very convincing. Take the last sentence of your NRC op-ed and put it next to the post here on CT on Chris Mooney’s work on Republicans’ views of science from a few days ago. It’s incredibly difficult to convince people that scientists know more than they do about the things scientists are expected to know more about. Imagine how much harder it is to convince people they don’t understand child psychology.

I think there is a good case to make that the category “developmentally-challenged” (or “developmentally-disabled” for those who insist on “politically incorrect” language) is not very useful when the majority of children fit the diagnosis. I think this goes along with the kinds of ideas in David Agus’s book The End of Illness and the legitimate criticism of the disease model of mental health. But I know with respect to the disease model of mental health, that even though a lot of practicing and professional psychiatrists think it’s basically wrong, it has a huge public benefit: People who have mental health problems are better able to escape stigmatizing themselves and being stigmatized by others by categorizing their problems as a treatable disease. And the evidence suggests that they are better off for doing so.

In the same way, the stigma of “my child is dumb” or “my child is out of control”, and the natural corollary “I must be a bad parent”, can be avoided by using the label “developmentally-challenged”. And that’s, to my mind, an unmitigated good thing.

So the “over-diagnosis” argument is not incoherent or unreasonable. But I do not think the conventional wisdom response of “there is no autism (or not so much autism), just kids in need of a good spanking” is appropriate or right. Schools used to be places that failed most children, and people should not want to go back to that era, but that’s what it means to complain that children are being over-diagnosed.

I think pushing the evidence for under-diagnosis is better, but it has to be made in a context of how schools where all – or almost all – children are expected to be “normal” and respond to the same kind of teaching have always failed a large share of children. It’s not easy to do that with a disease model of developmental disability. I don’t know how to get people to understand that ADHD, autism-like conditions, dyslexia, and other developmental challenges are not-especially-rare variations in people, that have downsides, but for which special teaching and sometimes medication can reduce those downsides and improve educational performance and quality of life. The disease model is, unfortunately, a lot simpler. But once you have the disease model, you have problems like people complaining those diseases are imaginary, or looking at increasing diagnosis and blaming vaccination, or other dumb responses.

4

Matt McIrvin 04.01.12 at 12:44 pm

The “overdiagnosis” notion definitely does exist in the US. I hear it more often for ADHD (where there’s an associated notion that doctors are just pushers turning kids into Ritalin addicts) than for autism, where people are more likely to believe either that conditions on the autism spectrum were formerly underdiagnosed, or that there’s a real increase (there are the anti-vaccination people, and the theory that autism is a genetic disorder caused by too many computer nerds breeding). But it definitely exists for both.

5

Joyce Reynolds-Ward 04.01.12 at 1:56 pm

I will leave detailed commentary for the more in-depth column; suffice it to say I’m an American special education teacher and the parent of a kid (now adult) who rode the leading edge of the awareness of the Asperger’s/High Functioning Autism label. Kids these days with similar or lesser issues are now more likely to be identified in elementary school than my son was–he was not officially educationally labeled until high school.

I think to some degree the awareness of the spectrum of autistic and attention disorders has led to a diagnostic increase, as has the very real changes (at least in the US) brought about by the end-all, be-all of high stakes assessment of No Child Left Behind which has narrowed the curriculum and increased pressure upon students.

Certainly I would not disagree with the labels of the students I’ve worked with who have been identified as having autism or ADHD–if anything, I think there are many more mild cases of both in the population than are generally identified, simply because the syndrome does not significantly interfere with the social and academic performance of those particular persons. But in those mild cases additional factors–family socioeconomic status, family stability, the student’s own emotional resilience and resources, the degree of impairment to receptive and expressive language abilities, amongst others–have contributed to the success of those particular persons. Note too that these are mild cases. Moderate to severe cases need much more support, especially if expressive and receptive language processing abilities are significantly impaired.

The good news is that the earlier the intervention, especially with expressive and receptive language processing skills in mild to moderate cases, the more positive the long-term outcome.

6

Omega Centauri 04.01.12 at 2:53 pm

I haven’t devoted a great deal of time to the subject, but my anecdotal observations support the theme that a lot of the population complains about the overdiagnosis problem. I think this tendency is stronger on the right side of the political spectrum.

Of course all these disorders really consitute a spectrum, from mild subclinical to severe, so a change in the diagnosis thresholds would be expected to have an effect of the statistics. The little bit I’ve read implies that the professional community thinks that overdiagnosis (or more accurately, changing standards and presumably better testing proceedures), only accounts for about half the increase in prevalence. Some environmental factor(s) (probably greater average parental age at childbirth) are probably involved as well.

My experience is somewhat similar to Derida’s, I have a son whom I suspect has a mild form of aspergers, whose is now doing great academically (undergrad). I suspect I had something similar, as I always had some sort of social deficit.

7

LFC 04.01.12 at 3:05 pm

I happened to hear this, which is relevant (for a U.S. context, at any rate).

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David Harmon 04.01.12 at 3:46 pm

Another American here. I’m on the autistic spectrum, and really should have been diagnosed 30 years ago, instead of having to figure it out for myself from a book 5 years ago. In my own case, a lot was covered up by my high intelligence, but that didn’t work so well once I got out of high school….

I suspect that there’s a mix of factors involved:

(1) It’s only recently that school authorities, or even mental-health professionals, were even looking for spectrum conditions as a possibility. That said, knowing the pattern, it’s quite clear that such people have always been around — indeed, some of them can be spotted in mythology! (Look especially for “mute” or “idiot” children who suddenly turn into “wise children”.)

(2) Before general awareness of autism, I’m quite sure that a lot of spectrum kids simply dropped off the radar — failed out of school, expelled and/or institutionalized due to inappropriate behavior, stigmatized and isolated as “idiots”, drifted to “oddball” social roles and professions, suicided, and so on. (Of course, some of the milder cases would have successfully compensated, and come through as “odd folks” who nevertheless managed to pass muster with society.) Nowadays, schools aren’t allowed to just throw kids out just because they’re “problems”, so now they get diagnosed….

(3) As you note, the diagnosis itself has now become a goal for many parents, simply because with no diagnosis, you don’t get treatment… or much of any help, for that matter. I was lucky enough to get a general “learning disabled” (and ADHD) diagnosis, but even that basically got generic support services, rather than any specific aid targeted to my particular issues. (They didn’t even figure out the sensory-overload thing!)

(4) All that said, I wouldn’t be surprised if there actually are more kids appearing with autistic-spectrum disorders, especially in Western nations. My own preferred candidate for a cause is environmental pollution: We’ve been spreading around all sorts of miscellaneous chemicals, many of which are now known to affect development (see also the DES babies, the effects of estrogen mimics, and perhaps part of the “obesity epidemic”). Other possible factors could be social and environmental stress, possible viral involvements, greater age of parents, unfortunate changes in prenatal care, or various nasty conditions provided by war. Current thinking is that autism probably has heavy epigenetic involvement — that is, damage to the “framework” surrounding the genes, not exactly “mutations” but still often heritable. Thus most of these causes could well have been accumulating over the last several generations, just waiting for us to notice the results.

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leederick 04.01.12 at 5:02 pm

“Basically the public concerns are these: the number of kids in special needs education are increasing; the number of kids in regular education … entitled to specialized help, are increasing too; and the number of kids on medication are increasing. These tendencies cost the government…; and since (some of) these increases are significant, many believe that surely this can’t be ‘natural’, but rather there must be some social forces behind it”

I can’t comment on the dutch situation specifically, but I have my doubts about the above. There’s been a very general attack on psychiatry for overdiagnosing / medicalising over a long period of time for a variety of conditions, where none of the education / cost concerns above apply. That implies to me it isn’t really that which is the main concern, since the same thing has been happening in instances where none of that is really present, and all we shouldn’t consider autism alone without thinking about similar trends in very different mental illnesses.

10

Sandwichman 04.01.12 at 6:06 pm

I hear this discourse all the time at home because one of my housemates is an academic who specializes in the study of the promotion of pharmaceuticals. Over diagnosis associated with patented prescription medication is a documented fact. The pharmaceutical companies are not in business for their health. They are in it for the money.

Have a look at the fall off in diagnosis of ADHD between children born in December and children born in January. The explanation is that children born in December enter school almost a year younger than those born in January. They are thus less mature. At around age five, eleven months makes a big difference in maturity — such things as self control, paying attention and sitting still.

11

TWB 04.01.12 at 6:40 pm

I think the assumption that psychiatric studies are as scientific as the studies backing childhood vaccination is a bit of a stretch. Psychiatry has numerous problems that need to be addressed, including documented overdiagnosis (“diagnostic fads”) for many mental illnesses.

Another problem needs to be addressed here: by widening the definition of autism to include vastly more people than before, psychiatrists are robbing the diagnosis of its meaning. Will an autism diagnosis mean anything significant when 10% of the population is diagnosed? 25%? 50%? I fear that autism is being used as a catch-all diagnosis for numerous types and severities of mental difference.

12

Brussel Sprout 04.01.12 at 6:44 pm

Again, I’m commenting with a vested interest as No.1 son has been diagnosed with dyspraxia and ADD. I’m also a teacher (secondary school English). The number of children in my classes with SEN has certainly increased over the past 20 years. I would say this is because diagnosis has become more sophisticated so it picks up more nuances in students who are tested, and the demand for conformity in UK/European classrooms has also increased. So in an environment when the ‘other’ sticks out and there are diagnostic tools available, diagnoses will increase and many of those who would otherwise have slipped through some net will be picked up.

I live in Belgium and I have found the medical profession generally very quick to prescribe medication and to rationalize its use. My jury is out regarding Ritalin. My son uses it, his teachers and he notice the difference in his concentration levels and attention span, but then, he has also grown up quite a bit since he was first subject to ed.psych testing age 7 (he’s now nearly 15). However, I am very wary of classrooms full of kids on medication when perhaps it would be more useful to their long-term development to give them coping strategies without medication, especially when they are only mildly affected.

Also, teachers do not uniformly understand how to deal with variations in student behaviour in class – and perhaps that is no bad thing. Perhaps it is part of the socialization process of school for students to accustom themselves to the very different ways of working of different teachers. My son for example, finds it easy to concentrate and follow in chemistry and physics and is getting good to high marks in these subjects. Biology on the other hand, is a perpetual struggle, even though age 6-7-8, he could label both the skeleton and musculature of most dinosaurs and birds of prey – you would have thought a reasonably sound grounding for some aspects of biological training. This is because the teacher’s method is harder for him to follow. He will need to handle differences like this in workplaces. The problem lies in the fact that he is in a high-stakes testing environment where his inability to cope with certain teachers may lead to discrimination despite his SEN status.

So yes, SEN diagnoses are increasing, but I am not convinced that that makes it any easier on the students with SEN and I am certainly not convinced that schools are any more understanding about the full implications of the range of conditions now covered by SEN. Everyone’s lives are being made more difficult thanks to widespread cuts in education services, and SEN is a natural casualty because its recipients are ‘the other’ and so vulnerable to prejudice and attack in a time of austerity.

13

Ingrid Robeyns 04.01.12 at 8:20 pm

thanks for all these thoughtful comments – much appreciated. I have been thinking today about the ‘stigma’ point raised by Scott and the closely related point that ‘in the end we want conformity’ (first stated by Derrida Derider but echoing here and there). I fully take that point, and I think all comments on this are highly insightful.
I think it’s telling that I haven’t mentioned these points in my OP – upon self-reflection, I think it is because in the autism-community in which I interact, there is no stigma (hence being nonconformist is the statistical norm); and in the (green-left-liberal) circles of friends and neighbors, there is no stigma associated with autism either. I am not at all downplaying the seriousness of stigma, it’s just that I haven’t given it much thought (I confess) which I think is explained because I don’t experience/see it much. But it would be very valuable to learn more about this, so I hope more people will write about it here over the next week.

leederick, you do have a point in what you’re saying. Yet in times in which the welfare state is cut back (as is now the case virtually everywhere, including here in the Netherlands), it is interesting to see that the discourse (at least in the Netherlands) is framed (at least to some extent) in terms of costs. Yet you are most probably right that there is a deeper motivation/reason/concern here, probably related to the view that many of these diagnosed cases are considered not to be ‘real’. In the Netherlands there have also been budget measures in mental health care which haven’t been matched to similar measures in physical health care (more precisely: psychiatric patients now all have to pay a lump-sum own contribution to specialized psychiatric care, which other patients who need specialized care don’t need to pay.)

14

Adam Pearce 04.01.12 at 8:57 pm

I’m not personally familiar with austism treatment or public discourse but findings like these :
>children covered by Medicaid are given powerful antipsychotic medicines at a rate four times higher than children whose parents have private insurance. And the Medicaid children are more likely to receive the drugs for less severe conditions than their middle-class counterparts
http://www.nytimes.com/2009/12/12/health/12medicaid.html?pagewanted=all

clearly demonstrate that there is a systemic tendency towards over diagnosis and medication.

15

R. Pastor 04.01.12 at 9:36 pm

A disease that was unknown a couple of decades ago now affects 1 in 110 kids (per the current TV ad campaign)? Seriously, folks. If it’s not overdiagnosis, it’s hysteria, or a need for people to have a convenient label/excuse. Human behavior spans a vast range, and this is an attempt to cram 90% of it into one category. I know kids who are truly autistic, and while there are degrees, their problems are far more serious than those of a kid who is just unusually active, shy, or whatever slight behavioral quirk now gets them labeled as “autistic.”

16

leederick 04.01.12 at 10:58 pm

Ingrid; yeah, I don’t know enough speak about the dutch situation. And I’m sure the same issues play out differently in different contexts and at different times, but what struck me was at least in your summary of public discourse or your op-ed you could almost have simply switched out autism for depression, or an affective disorder, or an anxiety disorder, and you’d pretty much have arguments identical to ones which have been made in totally different situations. It just mades me think the general issue is a whole lot bigger that just austerity in the Netherlands or autism.

I think there’s a problem with the way autism and most other mental illnesses don’t fall easily into a disease model the way that say neurosyphilis or nvCJD or cocaine dependency do – you just wouldn’t get the same debates about real cases and over or underdiagnosis with those conditions.

17

ice9 04.01.12 at 11:55 pm

There are two conversations going on. The first is nonscientific and its participants are virtually all parents of autism spectrum/LD/ADHD persons, or ‘candidates’ perhaps we should call them. The above post is an example of this discourse. It may be therapeutic for the writer, and beneficial for the ‘candidate'; it may not be. It is, however, almost entirely based on anecdotes of every stripe, including very troubling, even tragic ones. But anecdotes nevertheless.

The second conversation is scientific.

The two conversations are very different. Many, perhaps even most outcomes are dominated and driven by the first conversation; legislative maneuvers, popular culture movements, and so on. The influence of pharmaceutical interests is strong and, where possible, those interests ride or even shape the first conversation. Popular opinion, in the US never very sophisticated, is also influenced strongly by the first conversation and its celebrity figures such as Jenny McCarthy. It’s quite certain that the first conversation is not helping young people very much, and in many cases is hurting those people substantially, often leading to the abuse of children at the hands of their parents under the supervision of those ‘experts’ who flourish in precisely these spaces between overweening popular argument and real science. It takes only a little bit of quackery, venality, and stupidity to leverage the desperation of parents. These parents are happily spending vast sums on the services of discredited criminals like Andrew Wakefield or the chelation-therapy ‘doctors’ everywhere; many in the same breath will blame ‘Big Pharma’ for offenses great and small. (I have a friend who does all of this regularly.

And he’s a wonderful man, generous, smart, and truly concerned about the welfare of his son.) So we do not quite know how to take such a post as this one above. It is quite obviously driven by personal experience and frustration that the statistical question of the hour–diagnosis rates in this case–is one more place where distant, faceless scientists seem to be at odds with the some fraction or component of her own experience. At the moment the partisans of the first conversation have decided that it is in their interest–whether of the idea or the person isn’t clear–to see a substantial increase in the actual incidence of autism, which is a malady that can’t be treated, has no evident cause, and presents in a bewildering array and continuum of symptoms.

Clearly it’s impolite and unproductive to tell such people that they are gullible fools and poster-children for confirmation bias (politically correct expression intended.) My friend is gullible but he’s no fool, and his confirmation bias is understandable since it is confirmed by nearly everyone he speaks to (since everyone he speaks to is the parent of an autistic child–even me).

ice9

18

Substance McGravitas 04.02.12 at 12:06 am

It’s quite certain that the first conversation is not helping young people very much

When you take away the first conversation kids don’t get treatment, so no, it’s quite certain that the first conversation is indeed helping young people, in many cases very much.

19

Chrisb 04.02.12 at 12:54 am

Well, yes, of course autism is overdiagnosed: what the hell did people think that DSM was for?
The purpose of diagnostic manuals is to ensure that nobody who enters a psychiatrist’s office will lack a diagnosis that will enable them to claim the cost back on their medical insurance.
This is perhaps seen most clearly in the diagnosis of Oppositional Defiant Disorder in children, where the criteria are
A pattern of negativistic, hostile, and defiant behavior lasting at least 6 months, during which four (or more) of the following are present:
(1) often loses temper
(2) often argues with adults
(3) often actively defies or refuses to comply with adults’ requests or rules
(4) often deliberately annoys people
(5) often blames others for his or her mistakes or misbehavior
(6) is often touchy or easily annoyed by others
(7) is often angry and resentful
(8) is often spiteful or vindictive
Note: Consider a criterion met only if the behavior occurs more frequently than is typically observed in individuals of comparable age and developmental level.

(The note itself might conceivably be helpful if it offered some information on what frequency of these behaviours was typically observed, which of course it doesn’t.)

Autism in DSM is a Chinese restaurant menu diagnostic system – two from column one, three from column two, one from column three – that mathematically allow something like twelve thousand different ways to be autistic.

Though, come to think of it, the ‘Chinese restaurant menu’ idiom is American; here in Australia Chinese restaurants have never had it. We don’t do fortune cookies, either.

20

Substance McGravitas 04.02.12 at 1:31 am

In the absence of a DSM what percentage of diagnoses should remain?

21

John Quiggin 04.02.12 at 1:43 am

A general observation that’s implicit in lots of the discussion. There isn’t, and can’t be, any “scientific” basis for the choice of a point on the spectrum at which to diagnose conditions like these. A diagnosis is an answer to the question “is medical intervention desirable here?”, and that’s a question in ethics or public policy, not medical science*.

To take a relatively uncontroversial example (with no guarantee of accuracy on the details), visual acuity in humans ranges from a best observed level of 20/8 to extreme myopia or blindness, depending on whether you want to make blindness a separate category. There has long been a convention that 20/20 vision is normal and that anything worse than this justifies intervention in the form of eyeglasses. Since acuity deteriorates over time, most adults meet this condition sooner or later. But, now that laser surgery is available, it’s possible to do better than 20/20.

Effectively, a recommendation of intervention is a diagnosis of myopia. And the suggestion of laser surgery for people whose vision is better than that of the average person, and would previously have been regarded as normal raises some obvious concerns. But I don’t know that you get far my asking whether someone with 20/20 vision is “really” myopic.

* Note that this doesn’t really arise for discrete conditions like infectious diseases and cancers – you have them or you don’t, even if the recommended response is to do nothing,

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dilbert dogbert 04.02.12 at 2:02 am

You wondered where blaming parents comes from. I quickly scanned the comments looking for someone to post something like this from Wiki:
Bettelheim’s theories on the causes of autism have been largely discredited, and his reporting rates of cure have been questioned, with critics stating that his patients were not actually suffering from autism [10]. Initially Bettelheim believed that autism did not have an organic basis, but resulted when mothers withheld appropriate affection from their children and failed to make a good connection with them.

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Bruce Baugh 04.02.12 at 2:53 am

Joyce Reynolds-Ward seems really onto something with her comment that “I think to some degree the awareness of the spectrum of autistic and attention disorders has led to a diagnostic increase, as has the very real changes (at least in the US) brought about by the end-all, be-all of high stakes assessment of No Child Left Behind which has narrowed the curriculum and increased pressure upon students.” This just plain rings true; the pressures of that kind of standardization may well intensify the factors that make life harder for children anywhere on the spectrum.

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Dave Bell 04.02.12 at 6:23 am

I sometimes wonder if I would have been diagnosed with one of these apparently fashionable disorders, back when I was a kid. The way my father tells the story, it was all down to a bad teacher colliding with a smart kid, and the psychiatrists did get involved, and there was a huge stigma attached to mental illness in those days in the UK. I feel lucky to have escaped the “awfully big adventure” that the child was seeing happen to him.

I think that last is significant. Mental illness isn’t the social horror that it was, with its victims all locked away in asylums. And autism doesn’t have the old associations with the “dangerous lunatic”.

And another factor is that some illness, classified by symptoms, can now be usefully described by the treatments which work. I think we sometimes have a clash there. Does Ritalin work? For some people, yes. It is the people for whom it does not work who make it a hazardous option.

I think the public discourse lags behind the scientific knowledge. It usually does. I hear some newspaper reporters have discovered Freud and Jung.

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Ingrid Robeyns 04.02.12 at 6:26 am

Substance McGravitas @18: indeed. The comment @17 is a nice example of ‘binary thinking’ – there are two types of discourses etc etc. Well, I, as many others here at CT, are engaged in a range of different conversations, and there are not just two – and the discourse @17 is one I do not recognize. Perhaps it’s an example of US-generalisation to the rest of the world? (I’ve seen conversations in the US, very anti-scientific, that I don’t recognize at all from my country).

If policies such as ‘No Child Left Behind’ (about which I don’t know the details) would explain the increase in diagnoses, then we shouldn’t see an increase in the countries that have more relaxed school policies. Do we?

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ec 04.02.12 at 6:28 am

@14 That data doesn’t show anything on its own. It doesn’t show the children are taking drugs they don’t need (although that’s a reasonable guess–but only a guess). Other children could be failing to get drugs they need. You have to show the children don’t need it.

And it shows *absolutely nothing* about overdiagnosis.

Ingrid, I think I see almost the exact same phenomenon you say exists in the Netherlands here–people are simply suspicious of parents whose children have these issues. But your description made me realize that there might be a nationalist element as well–like here are all these people expecting us to help them with their handicaps! What’s happening with all these people? They are weak! (Are they a threat to the strength of the nation?) There’s a bizarre thing going on right now over parenting generally–where parents are blamed from ruining their children and thus the fabric of society is being ruined. Coddling their autistic children and making us coddle them as well! At this cultural moment, it makes a scary kind of sense to me.

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mjfgates 04.02.12 at 7:36 am

It’s not that “disabled” has been redefined to include more kids; it’s that “normal” has been defined upward to include fewer. “Normal” now is the same as 1970’s “upper half,” or maybe even 1970’s “top ten percent.” My kids are getting hit with subjects like algebra two or three years earlier than I did, and are expected to know things that I never was– the eighth grade math rubric includes a section on statistics, for example.

If you expected every Ford or Volkswagen to run Formula 1 races, you’d see a lot of frantic auto mechanics out there.

And if your kid isn’t “normal,” there has to be SOMETHING wrong with him.

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Niall McAuley 04.02.12 at 8:49 am

In Ireland, jackass clinical psychologist Tony Humphries caused a stir back in February with an article blaming parents for Autism (and casting doubt on whether Autism is even real):

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominantly in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

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Niall McAuley 04.02.12 at 8:51 am

That was supposed to have a cite to a copy of the offending article in full:

http://www.broadsheet.ie/2012/02/08/that-tony-humphreys-autism-article-in-full/

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Dick Mulliken 04.02.12 at 11:05 am

I started working with autistic children in the 1950s, when the diagnosis was established by Leo Kanner. At first he (and I) believed in parental causes, and Kanner coined the phrase the “refrigerator mother” later, he (and I) rejected this notion. He wrote a book apologizing to parents. I did some research where I demonstrated that parents of autistic kids were statistically both more and less cold, more and less over-involved, and more and less detached than parents of average kids. In other words, there was no pattern. There was more scatter, which I think was probably due to the special stresses of raising an autistic kid.
I see no reason not to mainstream autistic kids, but i think the best approach is one that demands the most interaction from the child. I see no reason not to try medication, but the track record is very spotty.

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todd kelly 04.02.12 at 1:20 pm

I have a 6 year old son, we have bever had him diagnosed by a doctor for Autism. ADHD, and so on. We became concerned for him around the age of 3 when he was having trouble with speech, socializing and basic communication. We read all the books; “boys develope later in speech than girls” and all that stuff. Locally we found an organization that came to our house and evaluated him. Then a second evaluation at one of the facilities. He was diagnosed as high functioning Autistic and they helped us get him into a program that would help him. After the first year, he was doing incredible, 180 degree difference, then the school switched staff and he went downhill. Constant parent / teacher meetings and weekly arguing with staff. It took better part of the school year to get him on track. Now he is in Kindergarten to which the school district incourages that Special Needs children are placed into class with regular students, whether it be for 1 class or the entire day. My son started out with just one class and by Christmas break was moved into a regular classroom full time, but if needed is can go to the Special Needs Resource Room for help. But he is in the top of his class in grades and needs the occassional redirection… I believe that years ago, kids with Autism/ADHD were cast aside as “Issued” or “Problem” and today there’s more focus. Now our school district gets ZERO in funding from State/Federal government for their Special Needs Resources and our District taxes are lower then those that do get funding (figure that one out)… There are parents that live by their doctor’s IEP and fight the school constantly, but it’s the teacher that sees the child everday for 8 hours and a doctor might see the child once every 6 months. Trust the school, work with the school don’t be combative and hold onto the IEP as a sacred document.

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ice9 04.02.12 at 1:47 pm

Substance: “When you take away the first conversation kids don’t get treatment, so no, it’s quite certain that the first conversation is indeed helping young people, in many cases very much.”

I don’t see why you would say this. First, I don’t imagine ‘taking away’ that conversation; it’s generated and powered by the desperation of people with no medical options in a culture which always has medical options–every malady is either cured or fetishized into a fundraiser. I worry that the conversation’s closed circularity empowers then enriches quacks who ‘treat’–hurt–kids and then claim success under the conversation’s special anti-scientific rules, which confirms the validity of those rules and the value of the quacks’ treatments and ideas.

The original post complains (in part, and indirectly) that outside forces drive ‘treatment’–aversion therapy, for example, or drugs for kids who score high on the spectrum, as my son does. I spend the first 15 years of his life resisting calls that he be treated, mostly from teachers. We held off on ‘treatment’ until he called for it. One family I know yielded their increasingly unmanageable son to the mainstream school’s idea of treatment, then withdrew him when they saw aversion therapy in operation–even though it was working. This family’s rationale was that the therapy was successful in the short run but that it was likely to be destructive to their hope for a cure. That hope for a cure would be found in Texas, 1500 miles away, for a fee. A very substantial fee.

No, what you mean is that without the first conversation kids don’t get treatment that is successful. Even though the first conversation is full of success stories, there is no success. This is because, in the first conversation, everybody’s either a parent or a profiteer, and the definition for success in that environment is different from the definition of success where the rules of science apply. I’m a high school teacher with 30 years of experience in the conversation. I don’t have any special insight into success, because the students I’ve had who fit on the spectrum–diagnosed or not–have enjoyed the same sort of ‘success’ as most of my other students–hit-or-miss, some dramatic, some tragic, some perfectly consistent with parental expectations, some wildly diverging from parental expectations, etc.

About the time I had a diagnosis for my son, I stopped attempting to be the agent of change for parents. I was already the agent of change for their kids, pretty much the same as I was for any other student; and the outcome for any agency with parents was unproductive for the students and frustrating and dangerous for me.

I’m pampered, I guess, because I teach in and send my students to reasonably well-off, highly professional suburban US school systems. But in those systems, it is not true that kids only get treatment if their parents engage in that ‘first conversation’, and it is more true that the first conversation is counterproductive and, on occasion, abusive.

ice9

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Ruth Sample 04.02.12 at 2:35 pm

The increase in people with Autism Spectrum Disorders is well-documented. The best epidemiological study to date sponsored by the CDC shows that 44% of the increase in autism is both real and unexplained. It is not attributable to factors such as broadened diagnostic criteria or diagnostic substitution (e.g., people who used to coded “mentally retarded” are often diagnosed with ASD now), or other real factors such as increasing parental age. Don’t take my word for it, here’s the link to a discussion of the results of the study at last year’s conference, with a nice little pie chart for you:

http://blog.autismspeaks.org/2011/02/03/s-evaluating-change/

Ruth Sample

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mpowell 04.02.12 at 3:00 pm

JQ @ 21 makes a very important point regarding the purpose of a diagnosis of autism. Still, there are important questions to be answered regarding the motivations of the actors reaching these diagnoses. In the US, in particular, the school system may be incentivized to identify autism since it would relax their testing requirements and expectations. Certainly the increases in number of diagnoses calls for at least some investigation of the issue, though it may simply be that this has been underdiagnosed in the past. Without understanding what is going on we can’t have the discussion that we need to have regarding what is the best approach to handling kids that may get diagnosed with austism or similar disorders. Some may require extra support and medication. But for many others in may be more appropriate to try and fix the regular classroom environment to better support the needs of the diverse population that it must inevitably serve (instead of only serving the needs of a narrowly defined ‘normal’).

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leederick 04.02.12 at 10:58 pm

“A general observation that’s implicit in lots of the discussion. There isn’t, and can’t be, any “scientific” basis for the choice of a point on the spectrum at which to diagnose conditions like these. A diagnosis is an answer to the question “is medical intervention desirable here?”, and that’s a question in ethics or public policy, not medical
science*.”

I think this is wrong. The idea that’s something’s a spectrum is a testable theory. It’s empirically true that visual acuity follows a spectrum. It follows a guttman scale; people who can read a letter 2 millimeters high will be able to read one 3 millimetres high, people who can read a letter 1 millimeters high will be able to read one 2 millimetres high. People haven’t been able to establish anything similar with regard to autism. As #19 notes its very definition is multidimensional.

I’m also not sure if diagnosis is trying to answer to the question of whether medical intervention is desirable. As #19 notes diagnosis is via a menu system. You have to get impairment in social interaction AND communication AND repetitive behaviour AND developmental delays at <3 years. So social interaction and communication can be as impared as you like, but if you don't have problems with repetitive behaviour and nothing happened under 3, you haven't got autism. That seems like it trying to track some underlying biological reality or cause, rather than just single out people in need of assistance. I think that's the logic of how these conditions are used in education – this child deserves intervention as they have a particular condition, as opposed to just having generic common garden disadvantage.

I'll also say I do think the idea that there's a spectrum which we're all part of is in some way a rhetorical strategy to desigmatise autism. So it's thought of more like vision or blood pressure where we're all deficient to some degree, and less like AIDS or cancer where if you have it you have a very different set of problems to everyone else. Obviously, I appreciate the difficulties people have and have great sympathy with the sentiment, but you can legitimately question if that represents diagnostic or biological reality.

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Substance McGravitas 04.02.12 at 11:59 pm

but if you don’t have problems with repetitive behaviour and nothing happened under 3, you haven’t got autism.

There’s the diagnosis of autism and the diagnosis of autism spectrum disorder. The DSM 5 is proposing autism as a subset of ASD, as would be the even-more-broad and half-assed Pervasive Developmental Disorder. Diagnostic or biological reality concerns aside, there might be a practical reason to ask for help from a professional when, say, your child doesn’t crawl and isn’t interested in crawling, your child doesn’t play with toys, your child doesn’t communicate well or says “panda” for minutes at a time, gags at the smell of anything spicier than mildly salted dough, or what have you. The diagnoses, however nebulous, might serve people with a kid like that. Perhaps they really ARE terrible parents and medical professionals can then observe the kids and take them away! Or maybe the family gets a little help from physical or occupational therapists who might help the kid figure out how to crawl, or from nutritionists who can help with the diet, or speech therapists to help the kid speak. Hey, there’s the possibility that they might all pipe up and say “this kid is fine and you’re full of it and the doctor made a bad diagnosis” and everyone goes home and breathes a sigh of relief. So: yes “you can legitimately question if that represents diagnostic or biological reality” but the parents of these kids might be looking less for a named disorder than for practical solutions to help their kid navigate in their surroundings.

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ice9 04.03.12 at 1:56 am

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John M. Burt 04.04.12 at 3:56 pm

“[G]ive me that child for a week and he’d be a different boy”

Well, he might be a boy with a newly-acquired stutter, or a tendency to cringe when he made a mistake, or a newfound fear of going out of the house, but basically the same boy, with all of the same problems in addition to the new ones . . . .

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ragweed 04.04.12 at 9:21 pm

Don’t you know all these kids would be fine if their parents would just take them horseback riding in Mongolia?

Excellent post and series of posts.

One of the difficult issues in all of this is how to raise legitimate criticisms of the healthcare system while respecting the actual individuals who make decisions for themselves and their children within that system.

I have less to say on ASD, which I suspect is, if anything, underdiagnosed. However, there does seem to be a real issue of over-diagnosis – or misdiagnosis – of ADHD in the US. My partner, who works in community mental health, has a number of horror stories of teachers and school administrators telling parent that their child is ADHD, or worse, that they child would not be able to return to school unless they were on medication. These are individuals with neither the training nor the authority to make a mental health diagnosis – which is particularly troublesome because there are other conditions, like anxiety disorders, that present like ADHD in the classroom and can only be distinguished with a more thorough examination of the childs history. While informed and empowered parents can find more appropriate resources, many parents with limited income, time, and power undoubtedly get pushed into the wrong approach.

Likewise the pharmaceuticals lobby and market heavily for the widespread use of ADHD medication and there is substantial evidence that this influences the misdiagnosis of ADHD and overuse of medication. There are similar concerns about antidepressants.

However, there are also many legitimate diagnosis and legitimate reasons for using ADHD medication, and for many children it is the best available option. In an ideal world, we might have dynamic multi-modal classrooms with kinesthetic learning methods that could help at least a large percentage of kids with ADHD do fine without medication. We should strive to make that world, but we don’t live there – in the real world of parents and children facing finite resources and limited institutions, medication is often the best choice. Critics of the system need to respect that, and not blame parents for making that choice – which can be a fine line to walk.

John

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