DSM change justified due to pandemic of AS misdiagnosis

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And that doesn't surprise me at all. I think the laziness of clinicians using PDD-NOS simply speaks to how little they truly understand the autism spectrum. PDD-NOS is a kind of stupid label anyway, instead of understanding that all autistics are different with their own blend of the traits and their own personalities, and that personalities and life experiences will often affect how the traits appear or are expressed at assessment, coupled with the likelihood of at least a degree of alexithymia meaning they may have trouble identifying things in themselves to clinicians, means they have just failed to delve deep enough to understand and just slapped such a stupid and meaningless label on people.

"Not Otherwise Specified" is pathetic really, it could just be taken to mean they didn't have that exact description in the manual, it doesn't mean it wasn't AS or HFA or whatever. It just means science hadn't got to understand it well enough yet.

Lowering compared to what? To the average IQ of normal people? To the average IQ of people with other ASDs? To the average IQ of the people that could be diagnosed with Asperger's in an alternate universe where a diagnosis of AS did not require impairments in day to day functioning?

But the whole framework still works with the notion that it is either on or off, that the diagnosis is true or false, applies or does not apply and people get confused, understandably, because like I said and like it would become obvious to you too, if you had years and years of knowledge and experience with mental health, its because its basically all still BS, very much in its infancy. Don't take it too serious.

I think it is better to admit that you do not understand a phenomena, or trait, than jump to conclusions and force square pegs into round holes.

If you want attribute a label to something, or a diagnosis, then you have to define the boundaries. In a clinical sense PDD-NOS highlights the vast range of traits that this covers.

Have you diverted your attentions from CAL_1138 then?

Sorry, just came back to this thread and found your question.

I meant compared to an alternate universe in which a diagnosis of Asperger's did not require impariments in day to day functioning.

Or in other words, the more concrete evidence of impairments in day to day functioning a diagnosis of Aspergers requires, the lower the average IQ of those diagnosed will be.

Hmm. Why would you think that? One of the ways that high functioning autism is identified is via tools like the Vineland II adaptive behavior scale. VABS-II provides a score that is similar to an IQ score, but represents one's adaptive and self-help skills. A discrepancy between IQ and adaptive skills is one thing many autistic people have.

The discrepancy between my IQ and my adaptive skills is rather wide. Rather than reducing my IQ score, it just makes people think I should be able to do things I either cannot do or cannot do very well because they keep confusing IQ scores with ability to function and overcome impairment.

In research, we don't care how good or bad you're functioning in your life.

What we want is your autistic brain to study (while it is inside your head).

We also would like your autistic brain to be a pure autistic brain without other disorders, preferably.

As long as you have your autistic brain, as shown by your autistic behaviors and your autism diagnosis, then we would like to understand autistic brains and brain functions with the participation of your autistic brain.

As long as you can do our tasks, we would like to study your autistic brain whether or not you have job, spouse, children, friends, enemies, rabbits, cats, or worms, lots and lots of worms (that are not in your brain).

When we measure your autistic traits, we don't care how good or bad you're functioning in your life, as we only care about the traits themselves, the autistic behaviors indicating the autistic cognition that is what is studied in studies on autistic brains (while they are inside autistic people's heads).

I have no problem with people who are very high-functioning being diagnosed with autism, as long as they have and have always had the traits of autism.

The traits, those are what I care about.

The functioning and the outcome, those are not fundamental to me.

In iResearch, there are some patterns that correlate with traits, the severity of autistic traits, but not with functioning or outcome.

Personally, I like reading about autistic people who are high-functioning and doing what they want to do in life and having families that they want to have.

I would like to do what I want to do in life and maybe have a family too.

I do not think that these high-functioning autistic people are misdiagnosed.

Since they are autistic, they are likely to have at least significant social impairments compared to neurotypical people, and they probably worked hard all their lives and all the time to be able to do what they want to do in life.

Based on research, there could be a group of people (I dunno what percentage) misdiagnosed with autism due to clinician incompetence in taking childhood history.

I read one study in which some people with schizophrenia had been also diagnosed with AS, but a careful review of childhood history showed lack of autistic traits in childhood.

The controversies around these decisions reside in two domains themselves. One is the social area—how will these changes affect people, their diagnoses, and the services they’re considered eligible to receive? The other domain is the arena of research. Subsuming autism stratifications into an umbrella diagnosis will, as Lai et al. point out in their recently published PLoS Biology paper, compromise the biological reality of autism and elide the very real differences among autism subsets. This blending of categories would, they argue, interfere with researchers’ abilities to tease out the various features of these different “autisms,” confounding efforts to characterize them and, ultimately, I’d say, to target interventions for these specific subsets.

Lai et al. take on the research aspects of this problem effectively and emphasize that better methods of characterization are possible. They discuss the concept of a continuum of characteristics of autism, noting that autism traits tend to exist in a normal distribution that can encompass the general population. Determining an individual’s location on the distribution for each characteristic would likely be useful both clinically, in terms of individualized medicine, and for research, in terms of grouping autism population subsets.

While Lai and colleagues, including senior author Simon Baron-Cohen, mention the effects of the assumed DSM-5 criteria on who might or might not receive a diagnosis, their primary concern in their commentary is how these new criteria will influence research. Here, I’ll leave that to them and focus on the other domain of controversy in autism and the DSM-5: the social repercussions.

A crystal ball is not to hand, so I can’t say with any certitude how these changes will ultimately affect who is and who is not diagnosed with autism and who will and who will not receive services. All I can do is refer to the existing studies addressing these very questions in the context of these criteria. I’ve expanded on a couple of these reports at length elsewhere, as have others with an interest in the subject. The short version is that studies overall indicate that at the least, 10% of people who would currently have an autism diagnosis under the DSM-IV-TR criteria would lose that diagnosis under the DSM-5, and some studies go as high as 55% in their estimates.

Even more troubling? The committee’s stated intention, as I noted here, is that those who now miss the diagnosis under DSM-5 would instead fall under the social communication disorder category. The problem with that is twofold. First, this diagnosis doesn’t exist and isn’t recognized as a disorder by the entities parents care about most: educational institutions and insurance companies. Will they begin to do so? That’s where the crystal ball would be handy.

Second, what we do know is that in a study led by DSM-5 architect Catherine Lord, children with PDD-NOS, as expected, were those most likely not to meet the new autism criteria, so presumably they are the population the social communication disorder category is expected to capture. Except that in that study, the children who failed to meet the DSM-5 autism criteria did so because they did not have dysfunction in the social domain although they did in the repetitive behavior domain. As the authors of Heurta et al. write: “Most children who did not meet the criteria did so because they did not demonstrate the required impairments in social and communication functioning, and not because they did not meet the restricted and repetitive behavior criteria. In fact, few children did not meet the restricted and repetitive behavior requirement in DSM-5.” If they lack these social deficits, how will a social communication disorder category capture them? If they fall between these two stools, thanks to the DSM-5, they’re unlikely to receive services for the deficits they do have in the other domain.

And that’s the biggest concern … not that children won’t be recognized as having deficits. Not that clinicians won’t, like the psychiatrist I quoted in the opening, shuttle the DSM to the side and use other measures, such as ADI-R and ADOS, to evaluate for autism. It’s that the entities responsible for providing the support—schools, insurance companies—won’t recognize the child as having the deficit if autism isn’t the name they carry.

An experienced clinician will know quite well how to go beyond the limitations of whatever DSM version is to-hand (or holding open a door) and recognize and diagnose autism when they see it. How much diagnostic rates will really change remains a matter for the crystal ball. In my mind, Lai et al.’s proposal of evaluating an individual’s location on a continuum for various traits and, as they call them, specifiers, will probably yield both the best clinical and social intervention basis for autism and the best research population stratification.

That said, in the end, all of these traits lead to what we do call, in the aggregate, the autism spectrum. And the new DSM view of autism as a catch-all for the entire spectrum has one positive purpose in the eyes of some autistic people I know: It unifies the commonalities they share under a label that they hold as an identity. That’s one beneficial social aspect of this change, and the one thing that might, when it comes to autism, elevate the DSM-5 above the level of doorstop.

Hmm. Why would you think that? One of the ways that high functioning autism is identified is via tools like the Vineland II adaptive behavior scale. VABS-II provides a score that is similar to an IQ score, but represents one's adaptive and self-help skills. A discrepancy between IQ and adaptive skills is one thing many autistic people have.

Vineland Adaptive Behavior Scale Scores as a Function of Age and Initial IQ in 210 Autistic Children

Human growth modeling statistics were utilized to examine how Vineland Adaptive Behavior Scale (VABS) scores changed in individuals with autistic disorder as a function of both age and initial IQ. Results revealed that subjects improved with age in all domains. The rate of growth in Communication and Daily Living Skills was related to initial IQ while rate of growth in Social Skills was not. Results should provide hope for parents and further support for the importance of functional social-communication skills in the treatment of autism.

Self-help skills and adaptive behaviour

The DSM-IV criteria refer to children with Asperger’s syndrome as having ‘no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than in social interaction), and curiosity about the environment in childhood’. Clinical experience and research indicate that parents, especially mothers, of children and adolescents with Asperger’s syndrome often have to provide verbal reminders and advice regarding self-help and daily living skills. This can range from help with problems with dexterity affecting activities such as using cutlery, to reminders regarding personal hygiene and dress sense, and encouragement with planning and time-management skills. When parents complete a standardized assessment of self-care skills and adaptive functioning, such abilities in children with Asperger’s syndrome are below the level expected for their age and intellectual ability (Smyrnios 2002). Clinicians have also recognized significant problems with adaptive behaviour, especially with regard to anger management, anxiety and depression (Attwood 2003a).

From page 43 of Attwood's book:

I'm not trying to brag, but I also have an extremely high IQ. This allows me to think a bit faster and remember more social rules