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Live DSM-5 discussion

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Greg Boustead
22 May 2013

On 29 May, we hosted a live 'virtual roundtable' on the criteria for autism in the newly published DSM-5, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders.

The panelists included Thomas Insel, director of the National Institute of Mental Health; Catherine Lord, DSM-5 working group member and director of the Center for Autism and the Developing Brain in New York City; and Helen Tager-Flusberg, director of the Research on Autism & Developmental Disorders program at Boston University.

You can listen to the complete discussion above.

Following the DSM-5's publication last week and a preemptive announcement from the National Institute of Mental Health that it will be directing research away from DSM categories, we heard important clarifications about what the DSM-5 is, and what it is not. We also heard Insel's vision for how he expects researchers to use the proposed Research Domain Criteria.

Listeners asked many questions, making for a lively and informative discussion about the new guidelines' impact on autism diagnosis as well as on research. Add your voice by posting reactions and follow-up questions in the comments section below.

PANELISTS

article image Catherine Lord
Director, Center for Autism and the Developing Brain
article image Thomas Insel
Director, National Institute of Mental Health
article image Helen Tager-Flusberg
Director, Research on Autism & Developmental Disorders, Boston University

The panel was moderated by science journalist Sarah DeWeerdt, a regular contributor to SFARI.org.


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Comments

Name: Elaine Chemistruck
24 May 2013 - 2:27AM

I am wondering what will happen to my son's diagnosis of childhood disintegrative disorder. The DSM-5 says that signs of autism must be present from early childhood. What is early? My son didn't begin to show signs of autism until after he began to experience seizures at age 9. He was diagnosed with PDD-NOS at age 12. That is (was) the mildest form of the disorder. Is 12 considered "early childhood"? My son clearly has autism now. But will he still have it under the new manual's definition?

Name: Rose Walker
28 May 2013 - 3:35PM

Please forgive me. I will have more than one question.

I am old enough to remember when ADHD was called MBD, or minimal brain dysfunction, with brain damage subtly implied. Nobody likes being called brain-damaged...I guess hyperactive was a better choice. Now, for many, autism is a "way of being", and I agree. We are all a little autistic (Uta Frith). Yet, I can't discount the toe-walking, decreased hand strength (with a typical "look"), acute sensory problems, atypical language development, that seem to be lost in the development of the all important "theory of mind", with apologies to those who agree with the theory. There are behavioral "signs", as Dr. Insel says, that are typically the indicators that are _last_ to show up in brain diseases like Alzheimers. Why do we refuse to acknowledge biological indicators in favor of labelling and behavioral indicators in autism?

I forgot the biggest one...concomitant epilepsy.

Reading the DSM5.org "Fact Sheet" on Autism Spectrum disorder, it concludes Huerta's study finds that 91% of those having a PDD diagnosis from DSM-IV will retain their diagnosis. Although my son relates to Aspergers, medically, it was never his diagnosis, but obtained from a school psychologist.This isn't my concern.

Having been a special educator, I know that there is Intellectual Disability, and Intellectual Disability with Autism. In many cases, I do believe the Autism diagnosis supersedes the ID, that it is more pertinent. What will happen to those children's labels? What percentage of them will retain their labels? Will they no longer receive autism services mandated by state governments?

Dr. Lords study found that 95% of autistics did not live indepedently. I read a similar percentage 15 years ago and was led to believe it was far less today. (That was an amazing study...)

I wonder if Dr. Tager-Flusberg would have a comment on her study: in laymen's terms, what accounted for the difference in the EEG Complexity as a biomarker that made the high risk children stand out?

Let me reiterate: In Dr. Lord's study, 95% of children diagnosed with autism would not live independently. I find this stunning.I wonder if she might tell in laymen's terms how this number was arrived at,and if she might guess as to how the DSM5 definitions might change this number, as children at the top and bottom of the bell curve are culled.

(Culled was an unfortunate term. I could never be a politico. Let's say pulled instead, and I'll get off the farm...)

LASTLY---Yes, I have NO SHAME... After looking at this study, http://www.jaacap.com/article/S0890-8567%2812%2900042-1/abstract --Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder-- it appears that regardless of what people perceive, the intent of the autism group (?) may have been to reduce the numbers of children diagnosed with autism, to stop the "epidemic" on paper, at least. Am I misinterpreting the numbers?

Name: Eileen Nicole Simon
28 May 2013 - 11:30PM

Autism is a neurological disorder. Its symptoms are also distinctive, thus the controversy over diagnosis is surprising. The most serious handicap is failure to acquire normal language. Brain impairments that interfere with the well-known stages of learning to speak should be the primary focus of research.

I am glad to see Dr. Tager-Flussberg working on the language disorder. She was a student of Roger Brown, who amassed huge amounts of data on early language development. He determined that infants respond to stressed syllables, then put syllabic parts of words together in unique “telegraphic” phrases.

Professor Brown became interested in the language of my autistic son, Conrad, and he wrote a chapter about Conrad in his textbook of psychology. Conrad was echolalic. He remembered and recited whole sentences and phrases, but then applied these fragments totally out-of-context in new situations. Kanner referred to this as metaphorical language.

Professor Brown also performed an interesting extemporaneous experiment while watching Conrad sitting on the floor, rocking back and forth looking at a book. Professor Brown took a stack of examination books from on top of his file cabinet, and slammed them down behind Conrad’s back. Conrad didn’t flinch, but continued rocking back and forth with his book.

Too much emphasis is put on the “social” disorder. Failure in social engagement should be viewed as part of the more serious failure of general awareness. Conrad did not orient to environmental sounds. However, he was terrified at even the sight of a telephone, which might suddenly begin to ring.

Auditory centers in the brainstem are susceptible to injury by anoxia at birth and toxic substances. Perinatal injury of subcortical structures disrupts maturation of target areas in the cerebral cortex, such as the language areas. Much more effort should go into preventing anoxia and toxic exposures in the perinatal period.

Name: Elaine Chemistruck
29 May 2013 - 8:05PM

The speakers did not get to my question. I still want to know: what do you now call it when a child doesn't begin to show signs of autism until age 9?

Name: Rose Walker
10 June 2013 - 1:15PM

Thanks for putting my stuff together.

I confused the 95% of Marsha Mailicks study with Dr. Lord's. I still wonder if Dr. Lord might have a comment on that, if she sees the same degree of disability.

I inadvertantly came across one of the most interesting studies I had ever seen based on parental videos of their autistic children before their first year. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC25000/ It points toward a neurological, not a psychological impairment. (Do we try to change the behavior of someone with Alzheimers or Parkinsons? Same thing.) It led to this http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3556589/

I really hope Dr. Insel "wins".

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