18-Year-Old Man Restrained in Room for Three Years

I received an E-mail from my boyfriend alerting me to a news story from a Dutch television program. 18-year-old Brandon lives at ‘s Heeren Loo, a well-known institution for people with intellectual disabilities. There, he has been fixated to the wall of his room using a leash for three years consecutively. His room is empty and looks like an isolation room. Brandon has not been outside since 2007.

Of course, it is aruged that Brandon’s unpredictable behavior – whatever that may be – is the cause for his needing to be restrained. In reality, however, there is no behavior too bad to warrant this sort of harsh and long-term restraining. Besides, this restraining will make matters much worse, in that it likely escalates Brandon’s behavior only more. Fortunatley, the Labor Party is asking for an emergency debate in Parliament, but this is way too late already.

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PTSD in People with Intellectual Disabilities

When searching for studies on post-traumatic symptoms, I came across an interesting paper on PTSD among individuals with an intellectual disability (ID. This study is the first systematic review of prevalence, assessment and treatment of PTSD in people with ID.

There are several reasons why people with intellectual disabilities are more susceptible to PTSD than the general population. Firstly, they are more likely to experience traumatic events, such as sexual or physical abuse. They are also more likely to experience negative life events, such as serious illness or injury. Secondly, higher intelligence is associated with better ability to avoid traumatization and to cope with its consequences. Therefore, people with ID may have a lower threshold for PTSD. Thirdly, people with ID are more likely to experience early separations from primary caregivers, hence putting them even more at risk of traumatization. Lastly, the recognition of oneself as disabled may be traumatizing to some individuals. For these reasons, there is an elevated rate of PTSD among people with ID. The literature review found four articles discussing prevalence of PTSD among those with ID. However, all studies were conducted on people referred for treatment who had gone through at least one traumatic event. Studies based on a large, heterogenous sample were lacking. Prevalence rates of PTSD varied from 5% – the prevalence among the general population -, to 60%.

Assessment of PTSD is difficult among individuals with ID, because these people tend to display different symptoms from people with normal intelligence. The Diagnostic Manual-Intellectual Disability (DM-ID, 2007), which is an adaptation of the DSM for assessing individuals with ID, has adapted PTSD criteria for people with mild to moderate ID on the one hand and severe or profound ID on the other. There are also some good instruments for measuring anxiety among people with ID, but these are not specific for PTSD.

The assessment of the traumatic event itself poses problems, as caregivers are not generally aware of a person’s trauma history or may not recognize traumatic events. Furthermore, what may not be traumatic to the average person – for example, a move arranged by others -, may be traumatic to someone with an intellectual disability.

Several treatments are recommended for PTSD in individuals with ID, but the evidence base is small. Firstly, a thorough medical evaluation is recommended, because of the high comorbidity with medical disorders. Psychopharmacology is discussed, but specific research on medication intervention for this population, is absent.

The second treatment approach focuses on changing the environment to eliminate frightening cues. Training and support of caregivers to teach them appropriate responses to PTSD symptoms, is also mentioned. This is particularly relevant for those with lower levels of intelligence.

Lastly, psychotherapy can be useful for the treatment of PTSD. There is clinical support for the use of cognitive-behavioral therapy (CBT) in people with mild ID. The techniques reported on were exposure therapy and imaginary rehearsal therapy. Two case reports were also found on the use of EMDR for PTSD among individuals with mild ID. In all therapeutic approaches described, modifications were made for the clients’ disabilities.

Reference

Mevissen L., De Jongh A. (2010), PTSD and Its Treatment in People with Intellectual Disabilities: A Review of the Literature. Clinical Psychology Review, 30(3):308-316. DOI: 10.1016/j.cpr.2009.12.005.

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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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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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Autism, False Positives and DSM-V: Is It about Intellectual Disability Again?

Over at Opposing Views, Val writes an interesting article about the DSM-V and the potential overdiagnosis of autism. In her opinion, the criteria for autism are once again broadened to include more able persons, and those with intellectual disabilities are overlooked.

I agree in part with her. There is a risk that normal variation and subclinical autism will creep into the DSM-V, which means people who can function perfectly well, will get a label stuck onto them. I oppose this move, because we don’t need to medicalize normal variations, and, indeed, medicalizing normal variation will lead to less awareness of the real disability that autism is.

But I disagree where Val concludes that those with intellectual disabilities will be left out. Autistic disorder in DSM-IV doesn’t require intellectual disability, either, and a comorbid diagnosis is needed if one suffers from ID. In that respect, the effect of the broadening of criteria to include normal variation and subclinical presentations, will be the same no matter whether intellectual disability is present: severe autism symptomatology will be underestimated.

And, indeed, what about those with severe impairments from their autism who do not happen to have intellectual disabilities? I am sick of having intelligence equated with functioning in the autism community. That, in fact, damages those with the more severe impairments from their autism who happen to have normal IQs.

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Usefulness of DSM-IV-TR Criteria in Diagnosing Autism in Children with Intellectual Disabilities

Harold L. Doherty recently posted a link on Twitter to a study on the usefulness of the diagnostic criteria for autism in children with intellectual disabilities. The study was published in the June, 2010 issue of Focus on Autism and Other Developmental Disabilities.

The study tested 89 children with intellectual disabilities on a variety of tests, including for intelligence, adaptive behavior, and language ability. Then, children were assessed for autism using the ADOS-G, an observation scale for autistic behaviors. A consensus was reached over whether they had ASD (31 children) or not (58 children). Then, a parent of each of the children was given a semi-structured interview based on DSM-IV-TR criteria for autism. The resutls of these interviews were than analyzed to determine which criteria each child met. This information was used to determine the sensitivity (how likely this criterion was to correctly identify children with ASD) and specificity (how well this criterion correctly identified children without ASD as such) for each criterion. Differences in which criteria were met, could not be explained by differences in IQ, adaptive behavior, or any other independent variable, since there were no significant differences between groups on these measures. That is interesitng in itself, but not the focus here.

It was found that all four criteria of the social interaction domain (poor non-verbal communication, lack of appropriate peer relationships, lack of spontaneous sharing, and lack of social and emotional reciprocity), two of the criteria of the communication domain (stereotyped language and lack of appropriate make-believe play), and one of the criteria of the stereotypic behavior domain (stereotyped or restricted interests) were useful in distinguishing children with intellectual disability and ASD from those with only an intellectual disability. Within the domain of social interaction, an impairment in non-verbal communication was the most useful criterion, with both pretty good sensitivity and specificity. Interestingly, only impairment in non-verbal communication and stereotyped language have both sensitivity and specificity greater than 70%. The reason for the lack of usefulness of the other criteria was mostly the fact that a significant number (over forty percent, often) of the children with only intellectual disability and no ASD, also met these criteria. Interestingly, only 33% of the children who had ASD, met the criterion of preoccupation with parts of objects. This makes me wonder how useful this criterion is in the diagnosis of autism in general. It is not being proposed as a criterion in DSM-V anymore.

As I said, DSM-IV-TR interviews were used in this study. The authors stress the importance of using an observational method for diagnosing ASD in children with intellectual disabilities. They also advise that further research be done into specific methods of diagnosing autism in individuals with intellectual disability. Besides the fact that, apparently, only half the DSM-IV-TR criteria are useful in diagnosing ASD in people with intellectual disabilities, the reasoning goes that it is possible that, on the other criteria, there may be qualitative and quantitative differences between people with intellectual disabiliteis with and without ASD. These qualitative or quantitative differences are not properly identified by an all-or-nothing algorithm such as the DSM.

Lastly, research is needed on the usefulness of autism diagnostic criteria for people without intellectual disabilities versus those who do have intellectual disabilities. After all, the authors say, it is possible that autism presentation varies depending on level of intellectual ability. I would say that such research could also help us further figure out the complex interrelatedness between cognitive, social, behavioral, and communicative impairments that is seen in both autism and intellectual disability, and in the combination of these.

Reference

Hartley SL, Sikora DM (2010), Detecting Autism Spectrum Disorder in Children With Intellectual Disability: Which DSM-IV-TR Criteria Are Most Useful? Focus on Autism and Other Developmentqal Disabilities, 25(2):85-97. DOI: 10.1177/1088357609356094.

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Autism and Intellectual Disability Again: Complicating Factors vs. Denial

Alan Griswold of Autistic Aphorisms had an interesting post up yesterday about autism and intellectual disability, in which he described the complexities involved in measuring IQ in autistic individuals. Harold Doherty of Facing Autism in New Brunswick wrote a response in which he accused Mr. Griswold of not wanting to be associated with intellectual disability. That was, of course, not what Alan said. While he was debunking the 75-80% of autistics supposed to have intellectual disabilities, he was not saying that autistics cannot have an actual intellectual disability. In fact, he said quite the opposite.

I took Mr. Doherty’s 80% at face value until I learned via Mr. Griswold that the CDC report Mr. Doherty cited, gave a much lower prevalence of intellectual disability. Then, I took 75% at face value because my college neuropsychology textbook said so, despite the fact that it also said the prevalence of autism is a few per 10,000 individuals. I also didn’t doubt Doherty’s 80% from a Canadian Psychological Association report, because I hadn’t read the report.

Griswold is not denying that these figures were found somewhere – except, as I said, in the case of the CDC report. He and his commenter David were actually saying that 75-80% is an orthodox estimate that is taken into question by other esteemed professionals.

When Alan Griswold wrote about his son, who is labeled with intellectual disability – and got characterized as “high-functioning” by Harold for whatever reason -, he highlighted the complexities in measuring IQ in a young child, and especially an autistic child. These complicating factors are important to know. Not because they negate the fact that some autistics actually do have profound intellectual disabilities, but because they shine some light on why so many have low IQs. These findings, which demonstrate relative strengths and weaknesses in autistics, could also be used to target intervention. Therefore, it is important knowledge.

Of course, I will state again, we should never deny the fact that some autistics will function at a low level in everyday life, or perform low on certain tests. There is no evidence that all autistics score higher on non-interactive tests than interactive ones, for example. That is not something to be ashamed of or want to deny, but I don’t see either Alan or Harold doing that. Autistics are still all individuals, after all, and an appropriate assessment requires that each individual’s relative strengths and weaknesses be evaluated, regardless of what whichever research group may have statistically determined.

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Autistics and Stigma: It Shoudln’t Be About Hidden Intelligence

Harold Doherty of Facing Autism in New Brunswick, in his most recent post, criticizes the assertion that the stigma associated with autism is fading. The reasoning behind Doherty’s view is that, while the stigma associated with Asperger’s Syndrome and high-functioining autism may be fading – which, I might say, is not to say it doesn’t exist -, there is still a huge stigma associated with autism with intellectual disability. For once, I agree with Harold here.

Now Doherty continues to criticize Richard Grinker’s view that autistics may in fact be more intelligent than they appear. This view is in fact backed up by research: a number of autistics score higher on non-interactive tests, and this can make the difference between intellectual disability and normal IQ. But that shouldn’t be the point here, because it is also a fact that a number of autistics do not score within the normal range of IQ even on non-interactive tests. I do not know for certain whether Grinker denies that fact, since Doherty’s quote may be out of context, but if he does, he is denying a very real autistic experience, and he is stigmatizing not only autistics, but everyone with an intellectual disability, and, to a lesser degree, autistics who do not have an intellectual disability but are not as successful as Grinker may think autistics can be.

Eradication of stigma based on the condition that the stigmatized group prove they have enough in common with the majority, is not an eradication of stigma at all. It is the creation of new stigmas. If we want to deconstruct the stigma of autism, we should start by acknowledging that some autistics in fact do not conform to the shiney examples of success that make it onto TV, and that these people are acceptable. No amount of hidden abilities research will help the acceptance of the autistics who for one reason or another do not show these hidden abilities. Hidden ability research is good in order to find interventions or supports based on strengths, but it is not some kind of ticket to acceptance, because as human beings, we should not have to earn that ticket.

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Implementation of Low Vision Rehabilitation Advice for People with Intellectual Disabilities

People with intellectual disabilities are at a very high risk of visual impairment, often due to undiagnosed refractive errors and cataracts. Oftentimes, however, these people are being cared for in facilities that do not have knowledge about low vision, and do not know how to detect it. Low vision centers in the Netherlands take a pretty proactive role in screening for visual impairments in people with intellectual disabilities. However, it doesn’t help much if the advice these centers give, for example for glasses or lighting, is not followed up on by the intellectual disability facilities the people live in.

A recent study by Sjoukes et al. investigated factors influencing the implementation of low vision rehabilitation advice by facilities for people with intellectual disabilities. It was found that many staff at intellectual disability facilities are not sufficiently familiar with the advice given by low vison centers, because it is usually technical: “Beware that acoustic input is important,” just isn’t going to make sense to someone unfamiliar with vision loss, especially if they’re staff with generally only vocational training rather than care specialists. On the other hand, it sounds merely logical to say you should attempt to let the client hear rather than see things.

Implementation of advice given by low vision centers was reasonable to complete in only twenty out of sixty cases studied. Besides the fact that people may not be familiar with the advice, this is also due to the bureaucracy involved in implementing adaptations. If a client, for example, needs specific lighting accommodations, the staff are going to need permission from the management to change the home lighting. I can tell you that in the Dutch system, changing anything about the setting is going to create a lot of hassles.

Besides this, it usually takes at least four months between the initial screening for visual impairment and the advice report. This seems like forever to me, but then again indeed when I was at rehab, there were four months between my admission interview and the day I got my advice report, too.

The authors make the following recommendations to low vision centers to increase the implementation of advice they give:

• Only screen [for visual impairment] when the board of the service provider agrees to support the implementation of advice;
• Reduce the time between screening and advice;
• Write the advice concisely and in an easy to read style;
• Start the advice with a summary of the most important points;
• Offer follow-up by telephone 3-6 months after the advice;
• Make sure that carers are (and stay) familiar with the advice by mentioning it in the updated care plan;
• Make agreements that in case of (re-)building facilities for people with ID the low vision centre will advise on illumination and design to adjust buildings to the needs of people with ID and low vision.

Now let’s hope the intellectual disability facilities will cooperate, too.

Reference

Sjoukes L, Kooijman A, Koot H, Evenhuis H (2010), Rehabilitation of Low Vision in Adults with Intellectual Disabilities: The Influence of Staff. Journal of Applied Research in Intellectual Disabilities, 23(2):186-191. DOI: 10.1111/j.1468-3148.2009.00516.x.

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