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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CNN: Stress Excuses Murdering of Autistics

CNN last Friday tried to raise awareness of the high stress experienced by parents of autistic children. Unfortunately, they chose a bad reason for their awareness raising: in Texas, a mother had just killed her two autistic children a few days earlier, telling the 911 operator that she’d strangled them because they were autistic. “I want normal children.” As if those don’t cause stress.

I am fine with it that the high stress levels experienced by parents of autistic children are covered in the media. I advocate for more supports to families, so that they can more easily navigate the complex system they will have to work with. But please, can we pay attention to these issues outside of the scope of terrible homicide cases? First of all, many more parents are in need of help than those who will eventually kill their children. Do we wait until someone kills their child before we advocate for support? Secondly, many people who kill their children, have other reasons to do so. Lastly, stress is simply no excuse for murder, period.

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Lay Perception of Autism Studied

Within the autism community, there is often a lot of debate about how autistics aare being perceived by society at large. Aspies fear that everyone associates autism with someone who is totally incapable of anything, and the parents of “low-functioning” autisticis fear that, with increased awareness, Asperger’s comes to dominate the perception of autism. Now, in the journal Disability & Society, there was a study examining ideas about autism from lay people. People were selected on the basis that they didn’t know anyone with autism and did not claim to have knowledge of autism. The study group was very small (only ten participatins), so no generalizations should be made.

Most participants perceived autism in terms of a deviation from normal child development. Usually, however, they worded it in terms of inappropriate behavior, such as an inability to express love, not knowing when to be quiet, and not fitting in with age peers. Most people believed this inappopriate behavior to be beyond the autistic’s control.

With regard to ability, most people believed autistics cannot live independently or get a job, and may end up living either with their parents or in institutions. This is apparently backed up by prior research. Some people believed autistics to have savant skills, while others believed only a small portion of these people have such gifts. In any case, it is not indicated that the “high-functioning” crord has taken over public perception of autism yet, as some parents fear.

Autism was viewed as both a mental disability similar to intellectual disabilities, and as a mental illness similar to schizophrenia. At least one participant seemed to view it as both.

Regarding etiology, biological factors were most commonly assumed. Participants named both genetic and environmental causes, which is in line with research again.

One myth the researchers specifically highlight, is the idea that autistics are trapped in their own bodies. This myth was apparently held, and it is incorrect. As we autistics often say, autism is not a shell that overlaps us; it is a part of who we are.

Reference

Huws, JC, Jones, RSP‘(2010), “They just seem to live their lives in their own little world”: lay perceptions of autism. Disability & Society, 25:3:331-344. DOI: 10.1080/09687591003701231.

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Autistic Student Denied Education, Loses Court Battle

Recently, an autistic man in the UK lost a court case over his lack of education when he was rtwelve. During that time, his former school could not deal with his behavior problems. They expelled him, and left him without education for eighteen months before another school was found that would take him. Now, A., as he is referred to in court, claimed damages, but the case cannot go to full trial. The organization representing the man is considering going to the European Court of Human Rights.

This is sad. What is sadder, is that quite a number of students with disabilities are left without education for reasons similar to A.’s. School distritcts excuse lack of education by the argument that they don’t have the resources to educate “difficult” students. Even in countries like the Netherlands, where school attendance is compulsory – I don’t know about the UK -, students are left behind to sit at home.

An educational system should be focused on educating students. When the resources are not available, these should be sought. Children have the rirhg tot education. I see no reason why this should not go for the most “difficult” students.

Unfortunately, I’m pretty sure schools will always be able to find loopholes in the system. In the Netherlands, we have a number of “dustbin” schools which take the unwanted but fail to educate them. If the “dustbin” schools don’t want you, you can just be refused entry to the classroom. It is rather enraging how sometimes the most vulnerable students are denied an education they most definitely need. Makes me wonder, for once, how economically feasible this is.

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Psychiatric Intensive Care Significantly Reduces Seclusion, Study Finds

In the Netherlands, seclusion is the main form of coercive management of dangerous people with mental illness. I have always opposed this, and argued that more individualiz\ed treatment could significantly reduce the need for seclusion. Now, in the current issue of the Journal of Psychiatric Intensive Care, this hypothesis was tested in one newly-built unit in Halsteren, North Brabant.

The patients all had a history of seclusion and long-term admission at different psychiatric units. All were thought to be a serious threat to themselves and others, and were committed to the PICU through our equivalent of the Mental Health Act. Most had a diagnosis of borderline personality disorder.

The new psychiatric intensive care unit (PICU) has four beds. Its multidisciplinary team consists of nursing staff, an occupational therapist, a social worker and a psychiatrist. The staff:patient ratio during the day is 1:2, which allows for the close observation of patient behavior.

The treatment philosophy of the unit incorporates aspects of mentalization-based treatment and attachment theory. Both are effective for treating borderline personality disorder. Further, the staff approach clients in a non-coeercive way, calling onto each patient’s autonomy as much as possible.

The study unfortunately did not evaluate clinical outcomes, although the authors say that most patients imporved. However, with regards to seclusion, the rate dropped dramatically, from 40% of one’s hospital stay before the patients were moved to the PICU to 0.5% while at the PICU. This is astonishing and promising to me. The one bad thing is that of course such intensive treatment is very expensive – more expensive than a seclusion room -, so I do hope this unit survives the healthcare budget cuts.

Reference

Deorgieva I, De Haan G, Smith W, Mulder CL (2010), Successful Reduction of Seclusion in a Newly Developed Psychiatric Intensive Care Unit. Journal of Psychiatric Intensive Care, 6(1):31-38. DOI: 10.1017/S1742646409990082.

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Highly Intelligent vs. High-Functioning

The fact that I refuse to buy into “functioning levels” with regard to autism, says nothing about my recognition that some people have more abilities than others. In fact, every autistic is different, but there are some more obvious ways in which autistics can have better or worse abilities. Intelligence is one such thing.

I have a verbal IQ of 154. My performance IQ cannot be measured because I am blind, but there is no indication that it would be below-average. I am, therefore, highly intelligent. Fine with me if autism advocates, or anyone else, use this term to describe me. I don’t like my intelligence for various reasons, but I have it. Some autistics do not or appear to do not. I have never denied that

With regard to the term “high-functioning”, however, I have a lot more trouble when I see it used about me. This term connotes independence in areas of daily living and a relatively good outcome. I am not “high-functioning” in many common respects: I live in an instituttion, I cannot work, I have difficulty with leisure activities, I have meltdowns and self-injurious behaviors, to name just a few things. Ironically, I do not fit in with the “high-functioning” crowd in one other respect, which is the fact that most of their problems are presumed to be social, and I am in a relationship.

If you want to refer to me in debates, and you want to distinguish me from your autistic relative who presumably needs a cure, and if you care to do it accurately, call me “highly intelligent”, not “high-functioning”. Then, examine your prejudices about people who are highly intelligent, whom you automatically always assume to be highly functional in daily life.

The fact that I refuse to buy into “functioning levels” with regard to autism, says nothing about my recognition that some people have more abilities than others. In fact, every autistic is different, but there are some more obvious ways in which autistics can have better or worse abilities. Intelligence is one such thing.

I have a verbal IQ of 154. My performance IQ cannot be measured because I am blind, but there is no indication that it would be below-average. I am, therefore, highly intelligent. Fine with me if autism advocates, or anyone else, use this term to describe me. I don’t like my intelligence for various reasons, but I have it. Some autistics do not or appear to do not. I have never denied that

With regard to the term “high-functioning”, however, I have a lot more trouble when I see it used about me. This term connotes independence in areas of daily living and a relatively good outcome. I am not “high-functioning” in many common respects: I live in an instituttion, I cannot work, I have difficulty with leisure activities, I have meltdowns and self-injurious behaviors, to name just a few things. Ironically, I do not fit in with the “high-functioning” crowd in one other respect, which is the fact that most of their problems are presumed to be social, and I am in a relationship.

If you want to refer to me in debates, and you want to distinguish me from your autistic relative who presumably needs a cure, and if you care to do it accurately, call me “highly intelligent”, not “high-functioning”. Then, examine your prejudices about people who are highly intelligent, whom you automatically always assume to be highly functional in daily life. Oh, and, of course, don’t assume someone is highly intelligent in the first place just because they can write well.

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Multiple Perspectives on Institutionalization

Back in February of 2008, my treatment team had decided that I should go to a training home for autistics in Deventer. They were somewhat confusing, so at first I thought they meant they wanted me in the so-called workhome there. A workhome is a combined living and working environment in an institutional setting. It is specifically set up for autistics with normal intelligence but severe autistic symptoms and/or comoribid behavior or psychiatric problems. There is a lot of structure, and the residents’ safety is a priority. It is made explicit that, while residents should be encouraged to follow their talents, they should not be overburdened.

In February of 2008, I was enraged that my treatment team thought I needed that. I didn’t need an institution. Okay, I had been admitted to the locked ward with suicidal thoughts, but those were gone. The only reason I was still there, is that no supported living place wanted me. My meltdowns, which apparently made it impossible for any supported living place to care for me, were used against me. I was going to be sent to the training home to unlearn those. Then, I could go back to living completely independently, they promised me, even though that was not my aim. I wanted stability after all. I wanted a place where I would not be overburdened. But I did not need an institution.

Just today, I took a look at the website for a possible future living placement. It is a workhome, and its web page makes it quite clear that it is for the more severely autistic (with normal intelligence), because care classes 5 to 7 are welcomed. I would qualify, being in care class 5. A visit has been planned for July 28, which of course doesn’t mean I will go there, since it isn’t a formal application and there are undoubtedly long waiting lists. I do have a few questions, but they are not about how it is way too protective and I don’t need an institution.

I still think, technically speaking, that I don’t need an institution, because I don’t think the most severe people should necessarily be housed on institution grounds. Ideally, I’d still live in the community, but I do want to be able to access the care I need.

On the other hand, there is a voice in me that says I shouldn’t give in to institutionalization. The voice tells me that I lived for nineteen years without any noticeable impairment other than blindness. If I graduated from a high level high school with high grades, why did I fail college? If I lived almost independently at training home, why do I need so much help now? There are two possible explanations for this: institutionalization and burn-out. There’s a part in me, Jane, that favors the former and tells me to go live independently. And there’s a part in me, Carol, who has always said she can’t hold on. Whom do I choose? Is there a way to protect Carol without keeping Jane from fulfilling her talents?

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Autism, Celibacy, and Christian Weston Chandler

Via a post over at Autism’s Gadfly, I got to hear of someone called Christian Weston Chandler. Chandler is an autistic person who apparently is frustrated by his being a virgin at age 28. Apparently for this reason, he goes around harassing women, dressing offensively, and making homophobic, racist and sexist comments. Over at It’s Tabi’s Time, an apparent neurodiversity blog, Chandler is called a shame to the autistic community. I must say I disagree here.

What I find interesting, is that Chandler’s behavior is viewed as reflecting on the entire autistic community on both sides of the neurodiversity debate: either Chandler’s behavior is proof that autism should be cured because of its dramatic impact on sexuality, or Chandler is giving the entire autism community a bad name. Can we please start judging individual behavior and stop making it about a marginalized group the person with inappropriate behavior belongs to? No autistic male should be judged because of Chandler, and Chandler should not bear the responsibility of setting a good image for other autistics.

Of course, I am all fine with people highlighting the fact that autistic males (and females!) can be sexually frustrated. We might start looking for solutions on how to help people who are involuntarily celibate gain sexual satisfaction within the limits of the law. I would’ve hoped that it wouldn’t take a Christian Weston Chandler, who breaks the law to call attention to his sexual problems. Sexual problems are real among autistics. Please acknowledge that. A cure is not available – and besides, sexual problems exist among NTs, too. Acceptance of celibacy won’t change the fact that some autistics badly want sex. Let’s work towards solutions so that involuntarily celibate people can access sex without having to break the law. And let’s remember that if you’ve seen one sexually frustrated autistic, you’ve seen one sexually frustrated autistic. Christian Weston Chandler should not be the poster puppet for autistic involuntary celibacy.

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The Limits of Acceptability

If we as a neurodiversity movement say that we should accept autistics as they are, what do we mean? It is possible, after all, to accept a person, but not certain behaviors that person exhibits. For example, MJ of Autism Jabberwocky gives the example of Kim Stagliano’s fifteen-year-old daughter perserverating on infant toys. It is possible for Ms. Stagliano to accept her daughter, but not to accept that she perseverates on infant toys. I, for one, would disagree there, and would say that the non-acceptance of this behavior reflects the ableist norm that fifteen-year-olds shouldn’t be interested in infant toys. However, it does not mean Ms. Stagliano doesn’t love her child.

In fact, we all set limits on what we accept of ourselves and our children, whether we or our children have disabilities or not. These norms are sometimes societal and sometimes individual or family-based. The thing is, they are never universally right or wrong.

For example, it is a norm that, for job interviews, you do not engage in stimming behaviors – or at least not in certain stimming behaviors, since some are acceptable. This norm was created by mostly neurotypical people, and is hence ableist. Some people go so far as to say that stimming at all is wrong, while some people allow it in the privacy of a home.

Even I, as a person who tries to be non-ableist, have my disability-related behaviors I do not accept of myself. In my own case, these are the behaviors that could cause physical or serious psychological harm to myself or others. Meltdowns are an example. Self-harm is another example. I display both, and recently to an increased extent. If Ms. Stagliano’s daughter had been having a meltdown or self-harming in the picture, I would not have disagreed with Ms. Stagliano’s disappointmnet. I would still have found it offensive that she photographed her daughter in this position and put it on the Internet, thereby infringing on her daughter’s privacy. Also, I would hope that Ms. Stagliano’s approach of teaching her daughter not to self-harm – or for tha t matter engage with infant toys – would be supportive rather than punitive, but again, I would not disapprove of her sadness. The reason I consider self-harm to be unacceptable is not that it is any more gross or abnormal to the non-disabled observer, but because it is harmful.

However, this is still an individual standard, not one that is universally right. I also don’t mean to offend self-injurers who don’t feel their behavior is a problem, or who would not call it “unacceptable” even if they thought it is. I also make sure I try not to put myself down as a person for having engaged in what to me is unacceptable behavior. It’s just that: behavior that needs to change, without me as a person necessarily needing to change.

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Against the Autism Dichotomy

MJ of Autism Jabberwokcky yesterday wrote about the autism spectrum dichotomy. As is apparent from the title, MJ aims to distinguish different subtypes of autism, and he once again chooses to draw the line based on “functioning level”. He illustrates his point with two examples, one of a textbook case Aspie and their difficulty finding a job, and one of a few low-functioning autistic children learning to say “I don’t understand”. Triumphantly, MJ informs us that, yes, there are autistics who don’t know how to respond to an unknown question. Well, duh!

What strikes me as astonishing in all these autism dichotomies, you-are-not-like-my-child posts, etc., is that no-one ever actually draws a line somewhere. If autism is a dichotomy, then where, exactly, is the line between high and low functioning? How many points on an autism questionnaire does one need? How many words must one be able to say? How often must one bite one’s hands? What IQ must one have? What household chore must one be able to perform? There is no objective measure to draw the line, and that is precisely the problem with any similar dichotomy.

To draw somewhat of an anlogy, do you know how valid the Myers-Briggs Type Indicator (MBTI) personality test is? You know, the one with the INFJ, ESTP, etc. personality types? Well, people switch personality type on average every month. And why? Because the MBTI uses a dichotomous system to classify people: you are either introverted or extraverted, either judging or perceiving, etc. This doesn’t work. Personality tests that use a sliding scale for the traits they measure – such as tests based on the Big Five -, are much more valid.

Now I am not aware of anyone doing a factor analysis on autism traits, although I’d love to see one. But it appears that autism consists of a few different traits, each of which a person can function better or worse on. More importantly, even if autisticness were a single factor, a ten-point or hundred-point scale would make much more sense to measure it than a dichotomous approach.

Admittedly, MJ acknowledges that there is something inbetween high-functioning and low-functioning, but he refuses to reject the labels on this basis. Can’t we, instead of saying HF and LF, just say that some autistics are better at skill X than others and some autistics are worse at skill Y?

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