Unpacking the Complex Nature of the Autism “Epidemic”?

The upcoming issue of Research in Autism Spectrum Disorders includes an article entitled Unpacking the Complex Nature of the Autism Epidemic. Judging from the fact that it is a 7-page article only, I didn’t expect it to really unravel the complicated matter surrounding the increase in autism diagnosis over the years, and I was right.

The article starts by summarizing that autism spectrum disorders are a group of conditions marked by the triad of impairments. The authors remain neutral on the subject of causation, citing sources that postulate genetic causes as well as various environmental factors, and concluding that there is likely an interplay between both and that there is no single cause for autism.

Notwithstanding the title of their publication, the authors remain inconclusive, but lean towards believing there is no actual autism epidemic. This is clear from the rest of their article, in which they examine various factors which could’ve influenced increases in diagnosis rather than actual increases in autism prevalence:

• Changing diagnostic criteria: the diagnostic criteria for ASDs have been broadened significantly since the DSM-III in 1980, thereby allowing for more diagnoses to be made. One study they cite even estimates a 2-0 to 28-fold increase in prevalence explained by changing diagnostic criteria.
• Nomenclature: the authors warn readers to use specific terminology. “Autism” can mean “autistic disorder”, which is different from “autism spectrum disorder”, which is yet different from “pervasive developmental disorder”. The terminology used influences prevalence rates.
• Age of diagnosis: apparently, if children are diagnosed at an earlier age, this artificially inflates the prevalence rate of autism.
• Methodological considerations: as clinicians become more aware of ASD and how to detect it, they are easier able to diagnose autistics.
• Socio-cultural factors: people have an incentive to get an ASD diagnosis, because it will get them services. Furthermore, in areas with more pediatricians, more children are diagnosed with ASD. Working class or poor children and black children are also less likely to be diagnosed with ASD than white children or those from the middle or upper class.
• Diagnostic substitution: this involves the diagnosis of ASD as one’s primary disability where previously something else would have been diagnosed, such as intellectual disability or a learning disability. One study even found a comparable decrease in the prevalence of intellectual disability to the increase in ASD prevalence. Others found that the increase in ASD diagnoses was at least in part compensated by a decrease in diagnosis of another (primary) disability. The authors conclude that it has yet to be answered whether some children would truly in the past have been diagnosed with another disability rather than ASD – as one study of adults diagnosed with developmental language disorder found.

The authors, finally, don’t answer the question of whether ASD is truly increasing. They don’t seem to believe in an epidemic, but that doesn’t mean some factors couldn’t lead to a modest increase in ASD prevalence.

Reference

Leonard H, Dixon G, Whitehouse AJO, Bourke J, Aiberti K, Nassar N, Bower C, Glasson EJ (2010), Unpacking the Complex Nature of the Autism Epidemic. Research in Autism Spectrum Disorders, 4(4):548-554. DOI: 10.1016/j.rasd.2010.01.003

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Book Review: Born on a Blue Day

I just finished reading the Dutch version of Born on a Blue Day by Daniel Tammet. The book is the autobiography of a savant with Asperger’s Syndrome. Tammet starts by describing his childhood, including his experience of epilepsy, which may or may not have shaped his synesthetic savant abilities. It is intriguing how he describes his feeling of disconnectedness from neurotypicals. At first, Tammet doesn’t realize that he is different, and is pretty content in his own world of letters and numbers. But by adolescence, he becomes aware of the painful side of his social isolation, and he tries to make friends, and even creates some imaginary friends to fill the gap.

After graduating secondary school, Tammet spends a while doing nothing and trying to find a job as an unqualified librarian. Eventually, he applies for a position to volunteer as an English teacher in Lithuania. This experience helps him to learn social skills and develop friendships, and he develops an interest in the Lithuanian language. This seems to have been a stepping stone to his quick language learning later on, but that is not made explicit. It is also in Lithuania where he first meets other people who are gay like him, and he describes this as a transforming experience in his life.

Back in the UK, Tammet meets his partner through the Internet. It is interesting how he notes that Internet communications are important for autistics, as this is something I myself of course share.

What I’m missing, is how Tammet comes into contact with the scientists and producers who will make the film Brain Man about him. Tammet describes at length his experiences in the U.S., including some experiments carried out on him by scientists, and his encounter with Kim Peek. All of these are obviously important experiences in Tammet’s life – the ones that make him well-known -, but I was unable to tell how exactly he was able to connect to these people. Also, I miss any mention of how he found out he had Asperger’s beyond the fact that it was diagnosed at age 25.

Sometimes, I got lost in Tammet’s endless descriptions of his numeric and synesthetic experiences. As a fellow synesthete, still, I can’t relate to the vivid experiences he has, and I found the descriptions sometimes boring. I’m glad the audio book reader didn’t describe every picture, or my head might have exploded. Overall, however, the book was interesting.

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Abortion as a Matter of Bodily Autonomy

Over at Feministe, Frances Kissling writes an interesting post, entitled When Does Life Begin?. Frances does not attempt to answer this question, even though she appears to feel that life does not begin at conception. Her point, rather, is that it doesn’t matter when life begins: no-one should be forced to give their body to keep another alive.

As a person who has always felt that life begins at conception, simply because there is no other non-arbitrary point at which life could begin, it was this argument that had me shift my position on abortion from pro-life to politically pro-choice (I would still never undergo an abortion myself). It already came up in a discussion I had with my boyfriend several months ago, when I was still questioning my position, but I was unaware of the importance of bodily autonomy at the time. Now that I have read more feminist writing on the subject, and strongly affirmed my support for bodily autonomy in any other case, I should also affirm it in cases of abortion.

This does mean that I still support abortion up to viability only, because babies don’t need to die in order to relieve their mothers of the discomfort of pregnancy once they are viable. I do not believe that abortion should be used to directly control whether a viable child lives or not, because the biological mother has other options than to parent the child by then. I am aware that viability is a controversial issue, too, and I hold the position that every attempt should be made to keep a baby alive, and that means viability is currently at 22-23 weeks in the industrialized world. This issue is very complicated and converoversial though. I maintain that there is a difference between being a direct burden on another person’s body, and being a burden on society. A number of pro-choicers will disagree with me here.

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Despite Rules, Restraint and Seclusion Problem Persists in Iowa Schools

In 2008, new regulations took effect in the state of Iowa limiting the use of restraint and seclusion in schools. The regulations determine how and under what circumstances students can be restrained, how long a student can be locked up into a time-out room, and specifically state that seclusion and restraint cannot be used as punishment. Despite these rules, teachers in three school districts have used restraint or seclusion inappropriately. In one case, a student was strapped to a chair because his aides were absent. In another case, someone was physically punished for disruptive behavior.

Disability advocates call for better training of school personnel. Parents want to know the rules, too, so that they can stand up for their children. I agree to both of these, but I also think an attitutde shift is needed, from repression of undesired behavior to individualized intervention. It is shocking, to me, that apparently belting a student to a chair is seen as an appropriate substitute for two aides. Even in unforeseen circumstances – I will assume this was a one-time incident -, this is unacceptable.

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Autism, Intellectual Disability, and the Concept of “Primary Disability”

Over at Autism Speaking, there’s an interesting post on autism and intellectual disability. It points out a few misconceptions about autism and intellectual disability. For example, Kanner and Asperger originally both excluded intellectually disabled persons from their autism descriptions, so it is not true that autism with intellectual disability is the original or “real” autism.

Unfortunately, AutismSpeaking makes a number of assertions that are not only unfair to those with autism and intellectual disability, but to everyone with multiple disabilities. The author repeatedly refers to someone’s “primary disability”, which is a concept that I personally reject. It presupposes that someone’s multiple disabilities can be taken apart, and that one disability is essentially at the core of the whole complex of disabilities. This is not true: each disability a person has – and every other characteristic -, uniquely influences that person and their abilities and difficulties. Multiple disabilities, further, tend to influence each other. So I strongly disagree with the idea that autistics with intellectual disabilities have a “primary disability” of intellectual disability, which is connoted in the post: they have multiple disabilities that impact and influence each other. The autism is likely to cause the person to function at an intellectually lower level than their IQ would suggest – or the other way around, since IQ may be hard to measure in autistics -, and intellectual disability further impacts the communication difficulties created by autism, for example. I agree that the term “low-functioning autistic” is suggestive that autism is the “primary disability” per se, and is therefore inaccurate, but I would not contend that intellectual disability is now one’s “primary disability”.

The other point I have huge disagreements with, is the excusing of the lack of attention for intellectually disabled autistics from autistic advocacy groups. This excusing comes from the reasoning that these groups are concerned with autism, not intellectual disability, but you cannot specialize multiple disabilities away. In my opinion, autistic advocacy groups should be concerned with all autistics, including those with multiple or severe disabilities. It is too easy to turn a deaf ear to people with, yet again, a different “primary disability”, because such a thing does not exist.

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Disability Blog Carnival Announcement

In 2007, I signed up to be host for the Disability Blog Carnival for the first time. Unexpectedly, I had to cancel that carnival – or precisely, it didn’t show up and no-one knew why -, because of my acute hospitalization. Now, still hospitalized but with a relatively stable Internet connection, I am giving it a chance again: I will be your host for the September Disability Blog Carnival.

I debated with myself long about the theme: would I go with my 2007 would-be theme – “Transitions” -, or would I choose something different? Eventually, in line with my BADD post, I decided to pick the theme “Identity”. Think of it as broadly as you want. Posts relating to transforming identities, are of course especially welcome, as they honor both themes. Just a reminder that, even though this is a disability blog carnival, we honor intersectionality, so racial, ethnic, gender, sexual and any other type of identities also count, as long as the post is somewhat relevant to disability.

Comments can be submitted preferably here or else at the Disability Studies, Temple U. blog. The deadline for submissions will be Tuesday night, September 21 – Tuesday night your time, so don’t worry about my living in Europe. I hope to post the carnival on Friday, September 24 – whenever it suits me, my time.

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Autism, Intellectual Disability, and Research Participation

Harold L. Doherty of Facing Autism in New Brunwswick has yet another post criticizing the new autism spectrum disorder DSM-V category, at least, that’s what I thought. I told Harold for the umpteenth time that there is no evidence of an autism-with-intellectual-disability subtype and that such a subtype doesn’t exist in DSM-IV, either. His statitistics, which he repeats over and over again, of 75-80% of autistic disorder people having intellectual disabilities, are self-evident in the sense that Asperger’s people cannot have an intellectual disability. It’s not science; it’s what the DSM-IV drafting committee decided.

I missed his main point, however, which was that autistics with intellectual disabilities are routinely excluded from research participation. Here is where I can agree with Mr. Doherty. If you want to study autism, you should study the full range of autism presentations, and that includes a large minority of those with intellectual disabilities.

From a research perspective, I can see how one would want to keep all irrelevant variables controlled. However, in autism, which has such a complex interaction with intellectual disability that some people question whether they are separate, IQ is not an irrlevant variable. If we stop excluding intellectually disabled people from autism research, we might in fact get a better understandinng of the complex interactions between social, communicative and cognitive impairments in autism.

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Intellectually Disabled Man to Visit Sex Worker at Taxpayer Expense

In today’s Daily Mail, there appeared an interesting opinion piece on taxpayer-funded sex for a man with intellectual disabilities. The man apparently needs to visit a prostitute in order to enhance his independence or dignity, as the article words it. He will be traveling to Amsterdam to see the sex worker, because, according to the article, he apparently needs a holiday, too. Of course, that is nonsensical: sex work is illegal in the UK and legal in the Netherlands, so that’s why he needs to travel here.

I have mixed feelings about this case. First of all, I think sex work ought to be legalized in the UK so that people don’t need to travel abroad to visit a sex worker. Secondly, yes, I do feel that disabled people have a right to access sex workers if they cannot get sexually satisfied any other way. I am not so sure whether I think this sex should be taxpayer-funded, but am not radically opposed to the idea.

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Then and Now: On Changing Abilities, and Why Those Don’t Make Me “Fake”

When I was reorganizing my blog a few weeks ago, I discovered a large number of posts from when I was still in high school. These reminded me of the relative ability I displayed at the time, as compared to my current impairment. That is, if you feel that high school performance and locked ward placement – I am temporarily back at my old ward – reflect directly on one’s level of intrinsic functioning or impairment. If you believe that a high school student who performs well on all subjects is inherently better than a locked ward patient, it is easy to assume that I have become less functional – less worthy even. Worse yet, it is easy to assume that either my past performance or my current impairment are unreal. This is the way many autistics’ realities and therefore their existences are being denied.

Yet when you reason that way, you forget the social circumstances involved in shaping a person’s abilities and difficulties. In my own case, for example, high school was relatively structured. I, being highly intelligent, didn’t have to do much studying, so I could get by without planning my studies. Socially, I didn’t fit in, but that is of course normal for a high-functioning Aspie like me. College, on the other hand, was a lot less structured, and, beyond that, a lot more academically challenging. I could no longer get by without studying, so my lack of organizational skills bit me in the ass.

In daily living, I never did many household chores when I lived with my parents, and did them with relatively much help at the independent living training home I attended. Besides, I had a strict schedule there and someone to fall back on should I get stuck. In independent living, I didn’t have these, and I fell flat on my face.

Beyond this, there are the difficulties that people would rather deny. One’d rather deny that, in high school, I had meltdowns several times a week and was a wanderer. On the locked ward, back when I resided there in 2007 and 2008, that was expected of the behaviorally disturbed person I was, but people still clung to the idea that this had all started in 2007. It hadn’t.

There are also the things, when it’s online people judging autistics, that you just don’t learn from someone’s blog. I hesitated to come out as a self-injurer because I know my staff read my blog. Now they’ve seen me head-bang several times. There are still things you do not know about me, because I find them hard to articulate or because they are still simply none of your business.

People could esaily deny that I am as autistic as I am based on my former blog posts. I can offer a rebuttal if they’re willing to believe that autism is as much influenced by social circumstances as it is a medical condition. Unfortunately, the people who are most likely to doubt my autism reality, don’t take the social model of disability and won’t see autism as something influenced by such circumstances as whether a person is accommodated – either formally or informally – or not.

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On the Medicalization of Safety

There’s been a lot of discussion about autism as a health hazard, due to autistics having an increased risk of dying in accidents. An example involves the autistic man who died in a hot van a few weeks ago. Rather than blaming a careless caregiver who locked him in, it is reasoned that a non-disabled person could’ve unlocked the door, broken a window or screamed for help. Hence, had this young man not been autistic, he would still have lived, so his life is “lost to autism”.

Ironically, I have never seen similar notions about blindness, when in fact blindness can pose safety hazards, too. If a blind person is injured or killed in an accident, most of the time the circumstances are blamed. For example, people call for audible traffic signals when a blind person is hit by a car – and when they don’t, it is because audible traffic signals do not always make the situation safer. Sometimes, blind people who call themselves more competent than the deceased/injured person, claim the person hit by a car had poor mobility skills, which is an extremely offensive and ableist comment. Never do you hear: “If the person could see, this wouldn’t have happened.”

Note that I have nothing againtt focusing on how we can keep people with disabilities safe. This includes training the individuals to navigate the world as safely as possible, and it includes accommodations to make the world safer for these individuals, such as audible traffic signals for the blind and supervision for individuals with developmental disabilities.

What I do have a problem with, is the medicalization of risk. Specifically, the blamiing of accidents on the individual’s disability, is centering non-disability rather than the concept of safety. I don’t care whether a disabled person could’ve done something differently that could’ve saved their life if they weren’t disabled; they are who they are and we need to make sure they can be as safe as possible.

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