Thursday, January 29, 2009

Verbatim: About autism severity

This episode of Verbatim finds autism researchers and clinicians wrestling in various ways with the (apparently) elusive concept of autism severity:

Note that in several cases, formal criteria for Autistic Disorder were met but a diagnosis of PDD-NOS or Asperger’s Disorder was given to the family. The reason for this was that the child had previously been given a diagnosis of PDD-NOS or Asperger’s and had continued to improve so that symptoms were fewer or milder than they had been. It was considered to be counterproductive to give the parents a more severe diagnosis when the child had actually shown significant improvement, and in many cases, the symptoms were present but in relatively mild form. (Kelley et al., 2006)

Indeed, in some ways, children with AS [Asperger syndrome] are more severe than those with autism as the discrepancy between their intellectual potential and their actual adaptation in terms of socialization and communication is so very marked; they look so "normal" but their behavior is so "odd." There is also some evidence that adolescents with AS have more symptoms of anxiety and depression than do children with autism (Szatmari et al., 1989), although the mechanism for this finding may only be that they have the ability to communicate their distress more readily. In this context, they have the more severe disorder because they have better communcation skills. It all depends on what dimension of severity one is talking about. (Szatmari, 2000)


References:

Kelley, E., Paul, J.J., Fein, D., & Naigles, L.R. (2006). Residual language deficits in optimal outcome children with a history of autism. Journal of Autism and Developmental Disorders, 36, 807-828.

Szatmari, P. (2000). Perpectives on the classification of Asperger syndrome. In A. Klin, F.R. Volkmar & S.S. Sparrow (Eds.), Asperger Syndrome (pp. 403-417). New York: Guilford.

Szatmari, P., Bartolucci, G., & Bremner, R. (1989). Asperger's syndrome and autism: Comparisons on early history and outcome. Developmental Medicine and Child Neurology, 31, 709-720.

10 comments:

Anonymous said...

Here, the people responsible for giving the diagnosis have overlooked the functional purpose of the Dx: it informs service providers.

Without a Dx, you don't get access to the necessary services.

I know and appreciate that this is wrong, offends sensibilities and really shouldn't happen - but it does.

Gareth

Autism Reality NB said...

A child who does not understand the dangers of automobile traffic, does not know understand language beyond a very simplistic level and will live his/her life in the care of others is not more severely affected by their PDD than someone who can function as an excellent employee with Canada Post, appear before the Supreme Court of Canada and a Canadian Senate committee and of course grant numerous media interviews?

Once again your credibility sinks lower and lower, an isolated quote from Dr. Szatmari notwithstanding.

Michelle Dawson said...

As I've noted, the fact that I provide quotes in Verbatim does not mean I agree with them.

According to Mr Doherty, quoting accurately from the autism literature, while providing full references, is really, really bad.

In order to achieve credibility in Mr Doherty's world, one must only ever report from the parts of the literature that Mr Doherty approves of. The rest of the literature must be suppressed. This represents the scientific and ethical standards Mr Doherty imposes on autistics.

Steve D said...

I recall sitting in the room during the session in which my oldest son was given his diagnosis of Autism.
It was the first time I had heard the concept of the spectrum explained. The diagnosing psych explained that my son was quite clearly in the "upper third" in terms of severity - classic autism.

One of the first questions I asked of her was whether or not this diagnosis - autism - put my son at risk for other conditions as he grew older - anxiety? depression?

Her response mirrors the quote from Szatmari. She said that is was fairly clear even at age 3 that Jason was not cognitively impaired. She explained that if he was to develop speech, and was to develop socially to the point that he could attend a mainstream classroom, then he was certainly at greater risk for those conditions. She described a double-edged sword, in that autistic people who seem least affected by casual observation are most at risk for such conditions as anxiety and depression.

I'm not saying I agree with or approve what she said, but it is an interesting dovetail from the Szatmari reference.

I would like to ask of Mr. Doherty if he feels that a suicide attempt due to anxiety/depression in a person with an AS diagnosis falls under his definition of "self injury".
I'd like to ask Mr. Doherty if alcoholism or homelessness are on his list of "danger" items that face autistic people.

daedalus2u said...

I attended a talk that SBC gave last fall where he presented his hypersystematizing ideas and his testosterone ideas at MIT. There was a question from the audience (from a woman) who asked “what about systematizing in language?” to which SBC was not able to provide a satisfactory answer.

After the talk I was able to speak with him for a few minutes and presented what I thought the dichotomy was, a trade-off of “theory of mind” for “theory of reality”; with my concept being that all communication is incorporated in a “theory of mind”, and so the hypersystematizing of ASDs isn’t going to apply to it. It is everything but communication (the theory of reality) that the hypersystematizing of ASDs applies to. He said he liked that dichotomy better, but that was before I had written it up in sufficient detail for it to be understood. It is now on my blog. I don’t really like the hypersystematizing part of it. I don’t think that is necessary or sufficient. I think there is a compulsion to deal with non-communicative aspects of reality, and over time that gets incorporated into “expert system neural networks”, as for example in savant calendar, but there is not necessarily a “systematization” of that information, the “systematization” of savant calendar is transparent to the user, just as the “systematization” of normal language acquisition is transparent to native speakers of a language.

http://daedalus2u.blogspot.com/2008/10/theory-of-mind-vs-theory-of-reality.html

Regarding the topic of the post, “autism severity”, this is a very complex subject because autism is a complex subject. The autism spectrum has many dimensions, each of which is somewhat orthogonal to the others and many of which are orthogonal to the NT spectrum.

In many ways it is like the blind men and the elephant. You can measure certain things, but what you can measure usually isn’t what is most important.

As I see it there are two main components to this “severity”, the first and most fundamental is the neuroanatomy which mostly occurs in utero, but which has large plasticity in early childhood and somewhat less as people age. That plasticity never goes to zero.

The next main component of “severity” depends on the acute NO level and which is most frequently typified by the acute stress level, particularly social stress. High social stress lowers NO levels and if the NO level gets to be too low, there is a “meltdown”. Chronic stress and meltdowns feedback on the neuroanatomy and accentuate the autism phenotype. Low NO also causes depression and anxiety.

konnie said...
This comment has been removed by a blog administrator.
Lucas said...

Leave the advert up this time so we can gaze at is as an exhibit displaying typical ethics business-minded service providers have when they get involved with Autism.

Michelle Dawson said...

I again took down (very badly placed) spam from Konnie, an autism service provider. Sorry, Lucas.

Joseph said...

Apart from Harold Doherty's concern trolling, which is quite obvious (I can't imagine he really believes Dr. Szatmari's quote is something Michelle Dawson said), he's again comparing the skills of children to the skills of adults. Why would that be a relevant or valid comparison?

Cereus_sphinx said...

In regards to "mildly autistic*" people having more anxiety.

There are two or maybe more things I can see operating here:

1- People are more likely to see frustration as a natural state for someone who appears to have less "abilities" and not call it anxiety. Whereas someone who looks basically "normal" needs another explanation.

2- I think that looking normal in and of itself can be more stressful. You can end up getting thrown into more sink-or-swim situations (which can be a good alternative to being held back too much). There's also the constant worry about what will happen when the mask of normalcy drops with a new person.

* There's a lot of debate about whether "severity" is a good way of categorizing. I think it probably isn't. I'm just looking at how researchers and people in general might be categorizing in their minds.