Wednesday, August 03, 2011

DSM-5 Autism Spectrum Disorder: 3 Domains Become 2 and Exclude Intellectually Disabled

In the DSM-5 the new Autism Spectrum Disorder will, for the most part focus on those with Aspergers' and high functioing autism. The vast majority of those with Autistic Disorder who are also intellectually disabled will be excluded. This is clear from the wording used in the proposed new Autism Spectrum Disorder and in the wording of the new Intellectual Developmental Disorder.  That interpretation is also confirmed by the official rationale for the new ASD.

The new Autism Spectrum Disorder, as I have previously written, is misnamed. It would be much more accurately described as New Asperger's Spectrum Disorder.  The new version, which will be rubber stamped, on final review by the APA DSM-5 work groups, will exclude persons with intellectual disability as the current DSM-IV Asperger's criteria does and will remove language delay and general communication impairment also making the ASD consistent with DSM-IV Asperger's criteria.  In addition the DSM-5 ASD criteria make it clear that although the New ASD must be  present from infancy or early childhood it may not be detected until later because of minimal social demands and support from parents or caregivers in early years. This consideration helps those on the milder end of the current autism spectrum.  

As an example my son who is severely affected by his Autistic Disorder and profound developmental delays was diagnosed at age 2 several months after we had begun to seek medical attention for his lack of development.  We knew nothing about autism but his lack of development was apparent and disconcerting. By contrast the media is full of stories of very high functioning persons, some of whom are now quite famous self appointed spokespersons on behalf of all persons with autism who were diagnosed as teens or adults. The  "may not be detected until later" qualifier helps ensure that the New ASD captures those with Asperger's and High Functioning Autism.

I have previously noted that the criteria for the New ASD also excludes those with intellectual disabilities. It does so  by:

1. Establishing 4 mandatory criteria each of which MUST be met before ASD will be diagnosed:

2. Excluding fulfillment of mandatory criterion A where that criterion can be accounted for by general developmental delay:

If a child has general deficits in communication it seems obvious that the general communication deficit will include social communication deficit.  The DSM-5's new Intellectual Developmental Disorder confirms this assertion in mandatory Criterion B which specifically states that deficits in general mental ability impair functioning in various areas including communication and social participation:

The  DSM-5's New Autism Spectrum Disorder rationale also confirms the exclusionary effect of the new Autism Spectrum Disorded Mandatory Criterion A by explaining why 3 domains will be collapsed into 2:

The explanation does continue on but the first example highlights why the reduction from 3 domains to 2 confirms that DSM-5 ASD mandatory Criterion A will exclude the intellectually disabled. As the DSM-5 description of Intellectual Developmental Disorder states the deficits in general mental abilities will impair functioning by limiting and restricting participation and performance in daily life activities such as communication and social participation.  The rationale offered for the new ASD meanwhile states the obvious:  deficits in communication and social behaviors are inseparable

When a person suffers from general mental deficits sufficient to meet an Intellectual Developmental Disorder diagnosis he/she will suffer impairment in communication and social interaction.  They are inseparable.  In any instance where a persons meets the IDD criteria they will not meet criterion A of the New ASD because their  persistent deficits in social communication and social interaction will be accounted for by general developmental delay.  

The description  of the DSM-5's new Autism Spectrum Disorder's mandatory Criterion A and the description of the new Intellectual Developmental Disorder combine to exclude from an Autism Spectrum Disorder diagnosis those who are intellectually disabled.  That interpretation is confirmed both by common sense and by the DSM-5 rationale for the new ASD.  3 domains become 2.  Deficits in communication and social behaviors are inseparable.  Those with IDD will suffer deficits in communication and social behavior and will be accounted for by their IDD diagnosis thus excluding them from an ASD diagnosis. 

In the brave new world of the DSM-5, as in the mainstream media, as in Hollywood, as in autism research generally, the Intellectually Disabled will be excluded from the autism spectrum. 


Anonymous said...

The latest on "Wrong Planet" features an adult recently diagnosed with ASD says she knew nothing about Autism, really - just that it was a terrible thing... drooling, non-speaking... blah blah. Now she's very excited about her new community....blah blah.

I've only seen drooling when seizures are going on - how come they always cite drooling?

And, call me old-fashioned, but getting excited and writing at length about community, validation, blah blah invalidates an autism diagnosis.

Call me perseverative, but APA's DSM is allowing professionals to seek increased billable hours by expanding the population, and now I'll add they're clearly working on cutting back interactions with "challenging" patients: a win-win for their membership.

trainspotter said...

I'm already planning the launch of my first book "How to cure your severely autistic child of autism in a single day". I'm also thinking about throwing a party to celebrate my daughter's emergence from autism ... of course I may need to send a fruit basket to my neighbours who just found out their 6 year old son has "slight Aspergers" as their child will now be considered "autistic". I'm sure the "severe disability" part will crush their "slightly disabled" consolation speech.

The only inconvenient part is that instead of writing "autism" on my daughter's paper work, I'll need to write 6 different disorders in the blank to accurately reflect her challenges that were once covered by the one label. More paperwork makes me grumpy. I should think about ordering a second fruit basket for myself.

MJ said...

I wonder how this is going to work in practice once the new DSM is published. How can you separate children who appear to have ID because they have limited communication and social awareness from children who have limited communication and social awareness because they have ID?

For example, if you gave my twin daughters an IQ test, they would likely test very poorly, possibly below the ID threshold. A clinician could easily give them an IQ test and declare that because they had a low IQ and deficits in functioning that they have ID instead of autism.

But, if you spend any amount of time working with them, you would quickly see that they have at least normal intelligence and it is the severity of their communication problems that makes it seem like they don't. Or in other words, they would have the appearance of ID because they literally don't understand what is going on most of the time.

Maybe the solution is going to be for clinicians to determine what the core or root of the problems are and assign a label based on that. But that seems like it would make a diagnosis more arbitrary instead of less.

I also have to wonder whether this revision is going to shrink the autism population since it will remove the single largest known cause of autism - fragile x. I believe fragile x accounts for somewhere between 5 and 10 percent of all kids with autism and all of these kids would be disqualified under the DSM v because they would, almost by definition, have ID.

trainspotter said...

I think one of the biggest problems with all of this (IMHO) is that the label “ID” still carries such a negative stigma. After generations of people working to change the stigmas of 'autism', people now hear the word 'autism' and think “there's so much we can do to improve this persons life” (and it's true). When we hear the word 'ID' we think “Mentally retarded. So sad. This person will never be worth the money they cost us.” I think it's the label 'ID' that needs an update! It's easier for people to dismiss the ID population- or those who score low on an IQ test- as being 'idiots' then it is to accept that they're just trapped in a body that doesn't work for them.

I think most of us don't care what label they put on our children as long as it accurately reflects their challenges and helps them get appropriate supports. What happens if/when our 'low-functioning' kids outgrow their ID diagnosis and have lost years of education and/or a chance at a fulfilling life? “Sorry honey, everyone thought you were worthless”. Are we going to throw out another generation(s) of people because some professionals wanted to 'improve' something during a midlife crisis. They should buy a sports car and leave the DSM alone!