Monday, 16 May 2011

Autism diagnosis in cultural context

A review of Isabel’s World by Roy Richard Grinker

In 1993, when Roy Grinker’s daughter, Isabel, was two years old she did not talk or gesture, flapped her hands and arms, and did not make eye contact. At 32 months, she had mastered about 70 words, which she spoke clearly, but all were nouns and the list did not include ‘mommy’ or ‘daddy’. She didn’t say ‘yes’ or ‘no’ and pulled someone to the refrigerator when she was hungry. Nowadays it’s hard to imagine a paediatrician would fail to recognise classic symptoms of autism, but for the Grinkers the process of getting a diagnosis was protracted and painful. At best they met with ignorance, and at worst with professionals who were imbued with the ideas of Bruno Bettelheim and attributed Isabel’s problems to the fact that her mother went out to work. Once a diagnosis was obtained, the Grinkers still had to fight for appropriate educational provision. They came up against people who had no experience of autism and were unwilling or unable to engage with Isabel. Gradually, though, the battle was won. Isabel, whose high nonverbal ability was eventually recognised, was able to attend a mainstream school with support. Now in her teens, she still has major problems with communication and social interaction, and her parents accept she will not able to live independently. She has, however, found a niche in her community where she has friends, can enjoy her interests in music and animals, and is accepted for who she is.

Grinker’s book is more than a parent’s first-hand account of his daughter’s autism: it is also influenced by the fact that he is a cultural anthropologist, with a special interest in attitudes to health and disability in different parts of the world. He uses his professional insights to comment on two related issues: the rise in autism diagnosis in the USA, and attitudes to autism in other cultures, particularly France, Korea, South Africa and India.

Figure 1
The rise in autism diagnosis is a hotly debated topic. In general, there is agreement about the facts: the number of children receiving an autism diagnosis in the USA has risen sharply since the 1970s. The data in Figure 1 were taken from a website relating to the Individuals with Disability Education Act (IDEA), and they show a more than four-fold increase in children identified with autism in the ten year period between 1997 and 2006. I have previously noted in a PLOS One article that research on autism, as assessed by funding and publications, has skyrocketed over the same period.

The debate is over the reason for the increase: is it due to some environmental factor that causes autism, or can it be explained simply in terms of changes in diagnostic criteria and related factors? Grinker comes down solidly in favour of the latter explanation, and a substantial part of the book is devoted to tracing the history of autism diagnosis and related socio-cultural factors. A major turning point was the publication in 1987 of the third revision of the diagnostic and statistical manual of the American Psychiatric Association, DSM-III-R. Grinker cites a study of 194 children suspected of autism which found that whereas 51% met criteria on DSM-III, 91% met criteria on DSM-III-R. He also reports a typographic error that was made in the publication of DSM-IV in 1994 that led to the ‘autism spectrum’ disorder of PDDNOS being defined on the basis of a child having impairments in social interaction or verbal/nonverbal communication skills, when it should have required impairment in both domains.

Grinker tackles a question often asked by those who think the autism epidemic is genuine: if it’s just due to a change in diagnostic practices, where were all the undiagnosed autistic children in the past? Surely we would have noticed them? On the basis of a follow-up of a small sample of UK children with severe language impairments, our group found cases who would now be regarded as unambiguously autistic, but who were diagnosed as language-impaired when they were seen in the 1980s, prior to DSM-IIIR. So are we just engaging in 'diagnostic substitution', whereby the same child who is now regarded as autistic was previously given a different label? If so, we'd expect to see that as autism diagnosis goes up, language disorder diagnosis goes down. This would be consistent with an analysis of doctor's records in the UK, which found that the proportion of children with diagnoses such as speech/language disorder went down over the same period as autism diagnoses went up. In the IDEA data, however, I found no evidence for such a process: over the 1997-2006 time period, there's actually a slight increase in diagnoses of speech/language diagnoses. Grinker, however, suggests that, in the US, children with autism would, in the past, often have been diagnosed with mental retardation. Consistent with this, the IDEA data do show a corresponding decrease in diagnosis of mental retardation over the same time period as autism diagnoses increase (see Figure 1).

Another point stressed by Grinker is that a diagnosis of autism has consequences for the child’s access to services. A diagnosis may get your child Medicaid waivers so that they can receive a host of interventions at reduced cost. Grinker describes how he lost hundreds of dollars because a speech pathologist who worked with Isabel submitted the bills under the diagnosis of “Mixed Receptive-Expressive Language Disorder”. When the diagnosis was changed to autism, the bills were automatically reimbursed. There is therefore considerable pressure on paediatricians to give a diagnosis of autism rather than some other condition.

The implications of an autism diagnosis for intervention is very different in some other countries. In France, where the legacy of psychoanalysis has been long-lasting, autism is seen as a psychodynamic disorder and there is little educational provision for affected children. In India, the diagnosis is seldom made, even if doctors recognise autism, because there seems no point: there are no facilities for affected children. Grinker has particular interest in South Korea, his wife’s birthplace, where the stigma attached to disability is so great that children with autism will be hidden away, because otherwise their siblings’ marriage prospects will be blighted. Education is seen as the route to success in Korea, and it is normal for children to spend hours after school being coached; a child who struggles at school or who does not conform to expected standards of behaviour brings shame to the family.

Grinker’s book shows that the impact of labels is immense, even if they are worryingly arbitrary. It seems crazy, for instance, that a child with educational difficulties will get insurance cover for interventions, or special help at school on the basis of a diagnosis of autism, whereas a child with equally serious needs who is diagnosed with mental retardation or receptive language disorder gets nothing. But on the positive side, he notes how the growing awareness and acceptance of autism has brought huge benefits to children and their families. Just as in Korea, it used to be common for people in the US to be baffled or even frightened by autism, and for schools to shun children with any kind of disability. The landscape has changed massively over the past twenty years. Grinker notes how Isabel’s schoolmates look out for her, and how her presence in a mainstream classroom has beneficial effects on all pupils. Cultural stereotypes are being challenged, so much so that it is no longer regarded as amazing if a university student tells you they have autism.

This brings Grinker to a final point: which kinds of cultural setting are most supportive for people with autism? He presents some fascinating data showing that rural communities are usually far more positive than urban ones for people with all kinds of disability. In a small community, everyone will know the person with a disability, and see them as an individual. In the context of neurodevelopmental disorders in general, I’ve long been advocating that we need an educational system that doesn’t just try to ‘fix’ children, but rather identifies activities they enjoy and can do well, as a basis for finding them a niche in society.  This view is cogently expressed by Grincher “… in order to help people with autism we don’t always need to fully mainstream them, or pretend that they are not different, and we don’t need to simply reduce stigma. Rather, we need to provide roles in our communities for pepole with autism, some of which they may, in fact, be able to perform better than anyone else…” (p. 342).

Bishop, D., Whitehouse, A., Watt, H., & Line, E. (2008). Autism and diagnostic substitution: evidence from a study of adults with a history of developmental language disorder Developmental Medicine & Child Neurology, 50 (5), 341-345 DOI: 10.1111/j.1469-8749.2008.02057.x


  1. Thanks Dorothy. One of many on my list of Books-I-really-should-have-read-by-now.

    Grinker's name came up recently in connection with studies suggesting that more than 1 in 50 kids in South Korea meet current autism criteria. This is the best analysis I've seen of that study so far:

  2. Just to say that I am already planning a blogpost on the South Korean study. It's an important study but I do have some reservations about the methods used to get those very high prevalence figures.

  3. A mother of an 11 yr old aspie, I find reading this very interesting. I was especially interesting in this passage: "if it’s just due to a change in diagnostic practices, where were all the undiagnosed autistic children in the past? Surely we would have noticed them?".

    In support groups for parents (of kids on the autism spectrum), I've been amazed by how many of the parents report there are others in their families who have asperger-like personalities (strong special interests, especially collecting stuff, loop-sided communication, tendencies to keep to themselves), or even people they were convinced would get a diagnosis if they were ever evaluated.

    These are people who never got a diagnosis, who may not be part of any kind of stats (except perhaps failed education), but who nevertheless struggled their ways through life. Some scraping by on their own, others dependent on help, maybe never leaving home. I'm sure severely autistic people may have found their way into the 'retarded'-category, but many on the high funcioning end may just have been considered a bit 'funny', may have met with attitudes like 'oh, pull yourself together', and may have failed in interactions with school, work, friends, potential partners, but still not enough to make it to any kind of stats.

    And most probably never received any useful kind of guidance, support, targeted training that would allow them to thrive and function to the best of their abilities, either...

  4. It's lucrative. Expect diagnosis to continue to skyrocket as long as there is money in it. People aren't stupid and see a gravy train coming miles away.

    As for the children, have their lives improved commensurately? Not so much...

  5. I think your cynicism is common, usethebrain, but given that many kids diagnosed with an ASD would have been ignored or labeled "mentally retarded" in days past and left to rot, I think many lives have been improved and many doors opened to further improvements. This isn't to say that money isn't a factor -- "biomedical" "cures" founded on flimsy evidence are rapidly becoming a huge industry. But the people diagnosing ASD aren't the ones making the majority of the money.

  6. We are putting WAAAAAYY to much on the backs of innocent children. It's not cynicism, although it may look that way. It's anger. I say this as a teacher(sorta) and a mother.

    You can't see the dynamics I see. And YOU are being cynical to say that it's only the natural health industry that is pulling in the big bucks. Strawman.

  7. I was confused for a moment, wondering if I had missed a new Grinker book. But evidently Unstrange Minds: A Father Remaps The World of Autism was re-titled when it was released in paperback, to Isobel's world.

    I am not sure what to say about Usethebrainsgodgiveyou assertion that an autism diagnosis is "lucrative". It's the same sorry argument that Allen Frances made...and is certainly not borne out by the experiences of very many US parents of children with autism. I cannot comment on the situation in the UK.

  8. How can you not say it is lucrative? Children have been children since the beginning of time. Just because we now try to give them labels and cure them...They are still children. Parents have raised them without the help of "experts" for all that time, too. Amazing, isn't it?

    My anger is at myself. It's not fair to direct it at others, shows my own insecurity. But think of it...aren't these the same children who once would be labeled as slow, or ornery, or brats, or stubborn, or a million other things.But they are still kids, with all their gifts and disabilities, just like all the rest of us.

    If they grow up with a sense of their worth, they impact the world regardless of their treatments or labels. I'm not saying the treatments aren't helpful, but the labels are very, very hurtful, especially when we give them a label of mental illness, which is what autism currently is. A label of dyslexia is much less damaging because people don't equate it with mental illness, but a mental difference, more like handedness. Dyslexia is still a dysability (freudian spelling...) in a way, yet successful entrepreneurs are highly over-represented by dyslexics, some reason because they see the big picture, and can hire people in areas with gifts that they lack. They have to learn to trust. In America, 30% of entreprenuers are dyslexic, while 10% of the populations is considered so. They now give lessons in business schools for normal minded entrepreneurs to think more dyslexically. I kid not.

    My own son was given labels of Semantic-Pragmatic disorder, educational autism, ADHD, and Aspergers. I have a degree in Special Ed, and all this time I believed it. But I've been scooting over to the label of dyslexia, in his math and writing because 1)it's true and describes his differences far more effectively than "mental illness" --he's too funny and happy to be mentally ill (either that, or his sense of humore is a great defense mechanism)
    2) Dyslexia is a neurological difference, and many effective teaching methods would be far more helpful to him than say...ABA or "social stories". He is 17 years old and still can't write his name (signature). As a teacher, I know I should be ashamed. We were busy doing chemistry and algebra and other stuff.

    U.S. parents are just going through a discovery phase. They are just becoming aware that they are inadequate. Allen Frances...who disputes his arguement? Do we have any studies to prove he is wrong?

    Lets just make our children mentally ill with "zero empathy" and neuroleptics. Yeah, that's good.

    Rural schools are good for kids. They are seen as kids, not labels.


  9. This book sounds very interesting, & the links to family members exhibiting other forms of the Autism spectrum an apt comment.

    A local nurse, whose passion is educating & working with people who have gluten sensitivity has observed that as the levels of gluten intolerance/ Celiac disease have been on the rise, so has Autism! Gluten is present in many processed foods, wheat has been bred to contain more gluten (& gluten flour is often added to baked goods), & while only a small percentage of those with gluten intolerance or celiac have been diagnosed - more & more people are becoming aware of this mounting problem.

    There seems to be a strong correlation between children diagnosed with Autism who have language regression "24% of the children with language regression had an increased family history of celiac disease or IBD while none of the children without language regression did." & children diagnosed with Autism who have followed a Gluten Free diet for a significant period of time often improve significantly.
    "If you or your child has autism, look into a trial of a gluten/casein free diet."

  10. Dia:
    I can't support your recommendations regarding gluten-free diet. Here is the summary of a recent systematic review looking at all scientifically acceptable studies:
    Mulloy et al 2010 RESEARCH IN AUTISM SPECTRUM DISORDERS Volume: 4 Pages: 328-339
    This paper systematically reviews research on the effects of gluten-free and/or casein-free (GFCF) diets in the treatment of ASD. Database, hand, and ancestry searches identified 15 articles for review. Each study was analyzed and summarized in terms of (a) participants, (b) specifics of the intervention, (c) dependent variables, (d) results, and (e) certainty of evidence. Critical analysis of each study's methodological rigor and results reveal that the current corpus of research does not support the use of GFCF diets in the treatment of ASD. Given the lack of empirical support, and the adverse consequences often associated with GFCF diets (e.g., stigmatization, diversion of treatment resources, reduced bone cortical thickness), such diets should only be implemented in the event a child with ASD experiences acute behavioral changes, seemingly associated with changes in diet, and/or medical professionals confirm through testing the child has allergies or food intolerances to gluten and/or casein