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.