Friday, November 19, 2010

Autism Disorders and the DSM-5 Storm - Will Intellectual Disability Realities Be Thrown Overboard?

The DSM-5 storm currently raging amongst psychiatric professionals should not be too shocking to most parents of autistic children.  Autism parents are used to the wars that rage over vaccines and autism and  whether it is right to try and treat or cure our own children. In the complex and controversial world of autism discussions  referring to  the well established fact that the "vast majority" of those with Autistic Disorder diagnoses  also have Intellectual Disabilities will invite outrage.  Even referring to Autistic Disorder as a Disorder will provoke controversy.  Some of these controversies are reflected in professional discussions so we are used to seeing controversy in any mention of autism. While not shocking the latest roar in the DSM-5 storm, this time, again, by Dr. Allen Francis, does shed some light on one aspect of the DSM-5 process that has puzzled me ... the failure to post severity criteria for public consumption on the official DSM-5 site of the American Psychiatric Association even after the start of the clinical field trial phase has been announced.

Dr. Allen Francis has been a persistent and candid critic of the DSM-5 process questioning many conceptual issues pertaining to the diagnostic definition changes of some disorders and the addition of new disorders to the Diagnoatic and Statistical Manual of Mental Disorders of the American Psychiatric Association.  In his latest critique of the DSM-5 process, DSM 5 Field Trials--Missed Deadlines Have Troubling Consequences,  Dr. Francis critiques the sloppiness of the process including missed deadlines for completion of different phases in the process. Dr. Francis focuses on the field trail phase of the DSM revision process and states:

It was patently obvious from the moment of its announcements that the new DSM-5 field test timetable was also a product of fantasy that would not be met in the real world. First off, it should have been clear that the field trials could not possibly start on time 2 months after their announcement. Recruiting the sites, training the personnel, gaining human rights approvals, and pilot testing always take at least 6 months. Predictably, we are already in mid November 2010 and it is still not at all clear when the DSM-5 field tests will actually begin to enroll patients at all its sites.Then there is the design. Forget for the moment that it asks the wrong questions and will produce largely irrelevant answers. Forget that it is testing poorly written criteria sets that are in much too rough a form to be ready for testing. Again, our focus here is only on timetables and missed deadlines. The DSM-5 field trials are a masterpiece of cumbersome complexity-- an administrative nightmare. They were originally scheduled to last 9 months starting July 2010 and ending in March 2011. Instead, the project will probably not start in full force until December 2010 or January 2011 (or later). By my reckoning (based on the experience with the DSM-IV field trials), it will take at least a year to complete from the date of first patient entry. And this assumes a maximum possible efficiency that is not at all likely given all the past laggard DSM-5 performances.
Because we are reaching a point of no return, these accumulating delays spell future disaster for DSM-5. The future schedule provides little room for error or forgivingness. The DSM-5 publication date of May 2013 is fixed in stone --both because the new ICD-10-CM codes will become official in October 2013 and because the APA budget depends on DSM-5 publishing profits. But the work to be done is enormous, not really do-able in the remaining time allotted. The result will be a rushed and jumbled DSM-5 that will create huge problems for our field and for our patients.

Dr. Francis's comments do not instill confidence in the DSM-5 to this humble autism dad.  But they do reflect some of the concerns I have felt over the failure by the DSM-5 revision teams to post the severity criteria for the New Autism Spectrum Disorder which will combine Aspergers and PDD-NOS with the existing category of Autistic Disorder. The most important distinction between Autistic Disorder and Aspergers has always been the exclusion from Aspergers Disorder diagnosis of anyone with Intellectual Disability.  Credible authorities have indicated that as many as 75-80% of persons with Autistic Disorder also have intellectual disabilities.  This aspect of Autistic Disorder reality is rarely mentioned or taken into account by anyone  discussing autism including the major  mainstream media or even researchers who now routinely announce "autism" study results based exclusively on research participants with high functioning Autistic Disorder or Aspergers.

When the proposed combination of the various PDD categories into the existing Autistic Disorder  was made public he major mainstream media focused exclusively on the reaction of persons with Aspergers or well known parents of children with Aspergers like anthropologist  Roy Richard Grinker.  The fear of some with Aspergers of being grouped with Autistic Disorder was assuaged by the assurances of Grinker and others who have gushed about how autism no longer carries a stigma. What was being unsaid in such statements was that the fear of stigma was the stigma of being associated  with a category that included so many persons with Mental Retardation now referred to euphemistically as Intellectual Disability.

As the father of a son with Autistic Disorder and Intellectual Disability who is not ashamed to speak openly about the Intellectual Disability aspect of my son's condition my concern is the exact opposite of those who fear association with Intellectual Disability.  My concern is that the severely debilitating challenges facing those with currently defined Autistic Disorder and Intellectual Disability will be further obscured and hidden in  the New Autism Spectrum Disorder. During the DSM-IV era "autism" has become increasingly defined in the public mind, and more and more in the minds of professionals and researchers,  by very high functioning persons with no obvious deficits or challenges. Meanwhile public, media and researchers alike simply ignore those low functioning persons with Autistic Disorder particularly those with Intellectual Disabilities.

Concerned about the persistent attempt to disassociate Intellectual Disability from Autistic Disorder I have visited the official DSM-5 site several times to see if the severity criteria would at least refer to intellectual disabilities or cognitive challenges in the severity criteria category. Despite the site's message to check back frequently there is today still no posting of the severity criteria for the proposed New Autism Spectrum Disorder. Dr. Francis, the lead professional in the DSM revision process that led to the DSM-IV, is obviously  much, much better informed about the likely reasons for this delay than this humble parent.  If he says it is a matter of sloppy work by the current DSM-5 revision teams  than it probably is or at least it is a major factor.

I  have to wonder though whether the persistent stigmatization arising from association of autism with intellectual disability ... with mental retardation ... is also a major factor in the failure of the DSM-5 review team to post severity criteria for the New Autism Spectrum Disorder.  I remain concerned that the challenges facing those most severely affected by autism will continue to be obscured and ignored, even hidden,  by medical professionals and researchers.

If Dr. Allen Francis, captain of the DSM-IV, does not have confidence in the good ship DSM-5, then why should I, a mere passenger,  have confidence that the ship will  weather the storm and arrive at a safe harbor? And why should I have confidence that some of the ship's baggage, including the Intellectual Disability reality faced by the vast majority of persons with the currently defined Autistic Disorder, will not be thrown overboard before the DSM-5 arrives in port?


Lisa Jo Rudy said...

Harold - would you mind posting the specific sources for severity that you're referring to in this blog? I've seen various studies, and their findings seem to be all over the map.

IMO, there really is no reliable way to ascertain severity stats, because they aren't properly kept. One of the toughest issues is the diagnosis of PDD-NOS, which can apparently mean anything from "ever so slightly autistic" to "profoundly disabled but with symptoms that are slightly different from autistic disorder."

Like you, I'm very nervous about the DSM V, and I don't think they're doing ANYone any favors by lumping "autism spectrum disorders" into one container.

I, too, am very aware that people with Aspergers have their own culture - and that culture most certainly does not include people with intellectual challenges.

For the sake of both groups, I hope the process gets a bit more focused!

Lisa Rudy

farmwifetwo said...

The problem is.... do they have ID or are they not testable due to their communication issues.

My son's IQ is in the 60's... severe MR... and no I'm not embarrassed to write that at all. Why b/c the test is not appropriate for another with a delay of any kind.

Yet, this child reads at grade level (4) and is reading short chapter books - like Nate the Great - with ease. Yet, this child cannot answer verbal questions wrt that story, yet can act out with his toys parts of it. Yet, that child given written questions and a variety of picture responses can pick out the correct picture answer 90% of the time.

Yet, this same child has difficulty responding to direct questions that are not No/Yes, Yet informed me Wed night, R "show and tell tomorrow" reading off his calendar from school, Mom "so we need to find something to take", R "Yes", Mom "What toy", R "What toy" (note the problem), Mom "spongebob", R "yes".
So is it ID or it communication?

Therefore as it reads in our paperwork Autistic Disorder and Developmental Delay. Which IMO is the correct dx. Assuming he is "retarded" b/c of the severity of his communication issues is not correct. Which is why we are waiting and hoping to get in the ACS program.

Minority said...

Is this all about the bottom line?

The DSM diagnostic codes are used for insurance billing, right? So as long as the codes can be used to justify various profitable treatments...

or am I paranoid?

For government services and supports, including levels of disability is essential. As an excuse to give people on the spectrum various expensive drugs levels of impairment can be ignored.

Unknown said...

Lisa Jo I am not sure what you are looking for in your request for "specific sources for severity"? If you are asking about sources for the numbers of persons with Autistic Disorder (not Autism Spectrum Disroders) I have previously posted some sources:

Autism Disorders and Intellectual Disability: Sources #1

Lisa Jo Rudy said...

Harold - what I'm actually searching for are statistics regarding the relative frequency of different diagnoses including:

Asperger syndrome
Autistic Disorder

I'm not aware of any such stats or records.

Re "intellectual disability," while obviously it's a real issue, I'm a bit skeptical of IQ tests as THE tool for measuring intellectual ability. From all I've read (and just using common sense), verbally-based testing isn't going to do a good job of describing the intellectual capability of a person whose verbal abilities are compromised.



Unknown said...

Lisa Jo you do not accept the Canadian Psychological Association figures as presented in their Canadian Senate Brief with respect to the numbers of persons with autism who have intellectual disabilities ( a figure which expressly excluded those with Aspegers)? And you do not accept the two surveys by the CDC which pointed to 44 and 41 percent of ALL persons on the autism spectrum as having intellectual disability. There is much evidence available of the functional limitations of those with autism and intellectual disabilities including the evidence represented by persons with autism living in various types of dependent care facilities.