High-Functioning Autism vs. Asperger’s Syndrome: Neuroanatomical Differences

First, sorry for my almost three-month hiatus. I am back, anyway. A few days ago, I commented on someone in a YouTube video claiming that high-functioning autism and Asperger’s Syndrome are subtly different in other ways than language acquisition. I disagreed based on DSM-IV criteria. However, the DSM-IV can be criticized, and it remains an ongoing debate whether HFA and Asperger’s are distinct.

Yu et al. (2011) did a meta-analysis of neuroimaging studies on people with autism and Asperger’s Syndrome to determine grey matter volume differences. In each of the analyzed studies, Asperger’s or autistic individuals were compared to controls, so the two groups were not directly compared. Note that autism or Asperger’s diagnostic status was determined based on the absence or presence of language delay.

It was found that not only did autistic individuals’ brains differ more from controls’ brains than the Asperger’s brains differed from those of controls, but that different areas within the grey matter were affected. Specifically, the studies on HFA people showed lower volumes in the cerebellum, right uncus, dorsal hippocampus and middle temporal gyrus compared with controls and grey matter volumes greater than in controls in the bilateral caudate, prefrontal lobe and ventral temporal lobe. In Asperger’s Syndrome people, lower grey matter volumes were found in the bilateral amygdala/hippocampal gyrus and prefrontal lobe, left occipital gyrus, right cerebellum, putamen and precuneus. Grey matter volumes were greater in fewer areas than among HFA subjects, including in the bilateral inferior parietal lobule and the left fusiform gyrus. The areas that are dissimilarly affected in Asperger’s versus HFA are not only related to language acquisition. The authors discuss observed differences between Asperger’s and HFA in the light of neuroimaging. They go so far as to speculate that Asperger’s should be considered more similar to schizophrenia on a continuum of neuropsychopathology than should autism.

Reference

Yu KK, Cheung C, Chua SE, McAlonan GM (2011), Can Asperger Syndrome Be Distinguished from Autism?: An Anatomic Likelihood Meta-Analysis of MRI Studies. Journal of Psychiatry and Neuroscience, 36(6): 412-421. DOI: 10.1503/jpn.100138.

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Proposed DSM-V Autism Severity Indicators

On the DSM-V website, the proposed severity criteria for autism spectrum disorder have finally been published. As expected, a distinction is made between severity of social/communicative impairment and of repetitive and restricted behaviors, interests and routines. One can function at a different level on those two domains. Level 1 persons require some support, level 2 persons require substantial support, and level 3 persons require very substantial support. The support needs are not defined, but it is made clear that there is a progressive scale in social responsiveness on the one hand and ability to be redirected from repetitive behaviors fixations or routines on the other. In the most severe persons, autism impairs all areas of functioning, while autism impairs at lest one area of functioning in the mildest autistic persons.

Unlike what Kent suggested on my previous post, I was unable to find evidence that persons with autism must need support with combing their hair or suchlike. If they are unresponsive to social interaction and are totally obsessed with a special interest, you might think they would forget these things, as I do, but this is not said. I am in fact sad that this criterion doesn’t have severity indicators, as people who are relatively responsive and able to redirect themselves from fixations, may very well have serious impairments in daily living, due to for example executive dysfunction.

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DSM-V Autism Criterion D

In the revised proposal for DSM-V criteria for autism spectrum disorder, there is a new criterion D.

Symptoms together limit and impair everyday functioning.

Harold L. Doherty of Facing Autism in New Brunswick wonders whether some autistic self-advocates will lose their diagnoses over this criterion.

First of all, Harold nor I can judge how well any individual autistic functions in daily life. We do not know them in real life, and we are not professional diagnosticians, so we cannot u(un)diagnose them over the Internet. I am inclined to think that some people, on the surface, would lose their diagnoses, but then again Harold judges me to be very high-functioning when I reside in an institution.

Secondly, in DSM-IV, there is already a criterion that says that people must have significant impairments in social, occupational or otehr areas of functioning. Now maybe social impairment is not enough for a proposed DSM-V diagnosis of autism spectrum disorder, but I am not sure. It is not defined, after all, which areas of daily living must be impaired.

So far, I and probably most autistics agree with the proposed criterion D. Those that don’t see autism as a disability, are very few, and mostly it is a matter of perspective. I, for one, agree that those who have absolutely no impairment in daily living, should not be diagnosed with a disability such as autism, but I’m also aware that I cannot judge how impaired other autistics are.

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Against “Le Packing”

A few days ago, Neuroskeptic posted about an unethical “treatment” for autism: “le packing”. In this “therapy”, an autistic child is wrapped in towels and then put into cold water. The logic behind le packing is as follows:

The alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defense mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.”

This is not only unethical, but reeks of psychoanalytic nonsense that has no place in autism treatment in the 21st century. In my opinion, le packing should be prohibited as a cruel way of handling children. Fortunately, leading autism experts wrote a consensus statement against it. I don’t have access to it, so I can’t comment on anyting other than what Neuroskeptic quoted, but it is good that leading professionals are condemning this.

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Change in Autism Symptoms and Maladaptive Behavior after Exiting High School

I’m not quite in the mood for studying. However, I thought that, since I’ve been nominated for best autism spectrum blogger in the Mental Nurse TWIM blog awards, I’d better do an autism post for a change. This time, I’m going to review a study on a subject that is dear to my heart: the effects of exiting high school on autism symptomatology and maladaptive behaviors in adolescents and young adults with ASD.

The study authors measured autistic symptoms using mothers’ responses on the Autism Diagnostic Interview-Revised (ADI-R) and maladaptive behaviors using the behavior problems subscale of the Scales of Independent Behavior-Revised (SIB-R), a scale I’ve never heard of so can’t judge. The ADI-R has four subscales – non-verbal communication, verbal communication, repetitive and stereotyped behaviors, and reciprocal social interaction. A symptom was rated as either present or absent, which allowed for a conservative estimate of improvement. On the SIB-R, there are three subscales – internalized behavior, externalized behavior, and asocial behavior -, and in this case, the mothers filling out the scale did rate severity and frequency. Autism symptoms and maladaptive behaviors were assessed at five different times over a ten-year period. For this study, only those who would exit high school during the study period or who were still in high school at the end of the study period (N = 242) were eligible. They were a subgroup of a larger study of 406 autistic adolescents and adults.

The study authors hypothetized that there would be a continuing improvement in symptomatology, but that improvement would slow down after high school exiting. This hypothesis was indeed confirmed. On all autism symptom subscales except for verbal communication, progress slowed or was reversed into a decline after high school exiting. The same goes for the internazed behavior score, but not externalized or asocial behavior.

The authors hypothetize that the reason for the slowed improvement after high school, is the less stimulating adult services as compared to school services. However, they cannot prove this by comparing services, because they did not examine them. I think there are numerous other explanations: ones the authors already mentioned, such as hormonal changes and slowing cognitive development, but also post-high school burn-out from a too stimulating environment.

Unlike what the authors expecting, the slowing in improvement after high school was the greatest among those who did not have an intellectual disability (ID). The authors assume that this is because the services to adults without intellectual disabilities are poorer than those for autistics who do have ID. This is quite possible, since a lot less non-ID autistics have employment or day activities than do autistics with ID.

Family socio-economic status had some influence on trajectories, where autistics living in the lower classes had more change in improvement after exiting high school than did those in the higher classes. This was, however, difficult to prove, because the sample included an overrepresentation of Caucasians and those in the higher socio-economic classes.

The authors recommend that adult day activities and employment programs should be improved to adequately serve autistics, especially those without intellectual disabilities. This is rather an early conclusion, given that services were not examined. However, any improvement to autism services is always welcome, of course.

Reference

Taylor J, Seltzer M (2010), Changes in the Autism Behavioral Phenotype During the Transition to Adulthood. Journal of Autism and Developmental Disorders, 40(12):1431-1446. DOI: 10.1007/s10803-010-1005-z.

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Dutch Autistics Receive Poor Care

According to a report by the Dutch Association for Autism (NVA), autistics often get the wrong care. Staff at residential care facilities don’t often know how to handle autism, hence causing autistics to end up on crisis wards or in isolation rooms. The NVA has been collecting stories from mostly family members of autistics about poor care since 2008. I at one point considered submitting my own story from my former ward, but didn’t since I never ended up in a “real” isolation room.

To me, it is obvious that care staff need more education about how to deal with autistic clients. This of course will not prevent outright abuse, since every adult should know that is wrong, but it will prevent unintended harm done to autistics by staff.

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Victory for Alex Oudman

Last week, the psychiatrist responsible for Alex Oudman’s long-term seclusion, was reprimanded by one of the Dutch regional medical disciplinary boards. Reprimanding is the second lightest sentence, after a warning, but it has a huge impact on doctors. Alex Oudman is a severely autistic man who lived in a mental institution in the northern Netherlands when he was secluded for months at a time in 2008. His family made sure the media was alerted, which even led to questions from MPs and new government policy to reduce the amount of seclusion in Dutch institutions. The family also went to the disciplinary board. I do not know yet whether the psychiatrist will appeal the reprimanding.

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Agricultural Communities for Autistic Adults: A Comparison to Dutch Workhomes

Yesterday, at the official Autism Speaks blog, there was a post about agricultural communities for autistic adults. These, in the Netherlands also known as “care farms”, provide housing and employment for adults with autism in a supported environment. They range in size from seven to thirty beds according to the article, so none are institution size. That doesn’t mean no institutional power dynamics though, so that is a possible problem: size is not what makes an institution bad.

The new organization, Agricultural Communities for Adults with Autism, aims to collaborate to form two hundred of such communities around the United States. The reason is that the current communities have huge waiting lists. The same goes for care farms and especially workhomes in the Netherlands, which is what this initiative reminded me of.

A workhome is a sheltered living and working environment for autistic adults. Unlike these agricultural communities and most care farms, most workhomes are part of mental institutions. However, as they operate independently, the problem of congregation is largely solved. Unlike at a care farm, workhomes offer more varied work opportunities, such as housekeeping, arts, industrial work, etc. At least one is a farm, which provides both agricultural and other work. Like the agricultural communities mentioned in the post, most provide day programs to adults living in the nearby community. Some, like the farm workhome, are part of a community, while others are located more segregatedly, but in the Netherlands, nothing can be on the edges of civilization due to our population density.

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Autism Shout Out: Inability to Communicate

Today, people are shutting down their social networks for a day to simulate what it is like to have autistic communication difficulties. In a response, autistics on Twitter, Facebook and around the blogosphere are responding by educating the public through communication. I have chosen to communicate about what it is truly like to lose the ability to communicate.

For me, loss of speech has several causes, autistic overload being just one of them. In that case, my sensory system is so overwhelmed that I lose the ability to respond to my environment. This includes not only a lack of speech, but a general inability to interact. I may engage in self-stimulatory or self-injurious behavior to regulate my sensory perception.

Another reason I may be unable to communicate, is anxiety. I refer to this state as “locked up inside”, after someone on a selective mutism listserv. When in this state, that may last for very short if it’s situational, I do try to compensate by making contact with people in other ways – for example, by staring at them.

Lastly, I can be unable to communicate or have word-finding problems when something unexpected happens. In this case, the reason I can’t communicate is that my plan for communicating is interrupted. For example, if I want to speak to a certain nurse, and another opens the office door, I tend to have difficulty finding the words to communicate what I want.

In general, I write better than I speak, and I express myself better in English than in Dutch, even though Dutch is my native language. I am getting better at expressing myself in Dutch speech, but I still encounter barriers.

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The AQ-Test on Facebook

Even though I haven’t seen it on Facebook myself, I heard from several sources that the Autism Spectrum Quotient test (AQ-test) is now there inbetween quizzes such as “Which Spongebob character are you?” and “What color should you due your hair?”. The AQ-test, developed by Simon Baron-Cohen, is used as a screening instrument in the diagnosis of autism spectrum disorders.

It doesn’t really surprise me that this test made it to Facebook. It’s been online on several sites since at least 2003, when I first took it and scored 43.

In fact, it suprises me more that this test is apparently psychometrically valid enough to be used as an autism screening tool. In my opinion, it measures how much you want to be on the autism spectrum: when, in 2006, I wanted to prove how tests you find on the Internet are not reliable, I took it again and scored 22 – just barely more than the average NT.

The fact that the AQ-test made it to the world’s most popular social network, does prove how popular autism is. This is not surprising, since it has been “in” for at least ten years. Autism is a popular catch-all diagnosis for children who do not quite fit in as well as serial killers. People call politicians who don’t listen to the people – essentially all politicians when it’s not election time – “autistics”. In short, autism is a popular term for anyone who isn’t quite acceptable. Which is ableist and psychophobic. But autism is also the diagnosis du jour for geniuses, which is also ableist, since it turns real autistics into stereotypes.

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