Sunday, July 17, 2011

Autism and Intellectual Disability in the DSM5: My Submission to the DSM5 Neurodevelopmental Disorders Work Group



July 17 2011

Neurodevelopmental Disorders DSM Work Group
American Psychiatric Association

Dear NDD Work Group Members

I am the father of a 15 year old son diagnosed at age 2 with Autistic Disorder and assessed with profound developmental delays conditions which severely restrict his everyday functioning. He requires, and will require, 24/7 adult supervision. Since his diagnosis 13 years ago I have actively advocated here in New Brunswick, Canada for government funding of evidence based early intervention and autism specific training of education assistants and resource teachers who work with autistic students. With other parents we have enjoyed some success in  these areas although we have had much less success in advocating for adequate adult care and treatment facilities for autistic adults. Throughout our efforts we were guided, and to the extent that we succeeded, we did so because of the leadership of American autism researchers such as Dr. O. Ivar Lovaas and others who established the evidence basis for the effectiveness of applied behavior analysis as an autism therapy. Throughout this time from 1998 the DSM definition of Autistic Disorder and the other Pervasive Developmental Disorders, the latter of which has become identified in popular usage and in research as the Autism Spectrum,  was constant. Now the entire category for the "Autism Spectrum" is formally being merged together in the DSM-5  into one disorder divided only by the extent to which daily functioning levels are impaired by the newly defined ASD. I have two primary concerns about this new Autism Spectrum Disorder as it goes through substantive change at both the "high functioning" and "low functioning" end of the "autism spectrum".

1) The effect of the changed definition on research conducted under the  DSM-IV definition of Autistic Disorder and the other PDD's. 

Although it is a far from being a unanimously held position,it has been often mentioned in discussion of the startling increases in rates of autism diagnoses that the increases are accounted for entirely by the definition changes of autism in the DSM-IV, even though that occurred some 17 years ago, and increased social awareness. It seems entirely predictable that a newly changed definition will also confound our understanding of real autism prevalence. 

2) The exclusion from Autism Spectrum Disorder diagnosis of those with Intellectual Disabilities.

As the father of a son who is severely affected by Autistic Disorder and who is "profoundly developmentally delayed" I am most concerned with the language of the DSM5's new  A 09 Autism Spectrum Disorder which appears to exclude those, or many of those, with intellectual disabilities from an Autism Spectrum Disorder diagnosis. The proposed Autism Spectrum Disorder definition stipulates that criteria A,B,C and D must all be met in order for an ASD diagnosis to be given. Criterion A states:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays,...

The wording I have highlighted, "not accounted for by general developmental delays" when used in the context of persistent deficits in social communication and social interaction across contexts appears to exclude any one with an Intellectual Disability from also being diagnosed with Autism Spectrum Disorder, since Intellectual Disability will involve exactly those deficits.  

This interpretation of the effect of Criterion A of the proposed Autism Spectrum Disorder is also supported by reference to Criterion B of the proposed A 00  Intellectual Developmental Disorder:

B.         The deficits in general mental abilities impair functioning in comparison to a person’s age and cultural group by limiting and restricting participation and performance in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings.

It seems clear that in any case of Intellectual Developmental Disorder the mandatory ASD Criterion A, persistent deficits in social communication and social interaction, will always be "accounted for by general developmental delays" and an Autism Spectrum Disorder diagnosis will be precluded.

I am aware that  Ms Lisa Jo Rudy of About.com autism has communicated recently with Dr. Bryan King of the NDD work group on the issue of the possible  exclusion of intellectually disabled from autism diagnoses. Dr. King provided the following response:

"There is no explicit desire to move anyone in to or out of specific diagnostic groups, however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.

Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."

The language of the proposed DSM is express and intentional. The absence of desire to remove anyone in or out of the groups does not mean that there is no intent to do so whether desired or not. It is the wording of the proposed revision that will determine future diagnoses. The exclusionary wording I have referenced is not explained in any meaningful way by Dr. King's comment. "More specific" to my humble interpretation is simply another way of saying not part of a general intellectual deficit. Which again indicates that the Intellectually Disabled will be excluded from the DSM's New Autism Spectrum Disorder.

I have commented on several occasions on my blog site Facing Autism in New Brunswick about the high numbers of persons with autism disorders who are also intellectually disabled. I  have cited sources for the pre-1994 definition of autism including CDC autism expert Dr. Marshalyn Yeargin-Allsopp who stated that those with intellectual disabilities constituted "the vast majority" of those with autism prior to the 1994 changes which added Asperger's Disorder to the PDD's.  The Canadian Psychological Association also referenced 80% of persons with non-Asperger's autism as having intellectual disabilities a figure which seems consistent with the CDC's two surveys showing 41-44% of persons with any autism spectrum disorder, including Aspergers, as having intellectual disabilities.  The 1994 changes diluted the 80% figure to roughly 40% by simply adding a group who by definition did not have intellectual disability, those with Asperger's. Now the DSM5 is poised to push the intellectually disabled off the spectrum completely and will essentially  redefine autism as what is currently Asperger's disorder.  

The DSM5  attempt to completely separate Autism and Intellectual Disability ignores the historically close relationship between those with ID  and those severely affected by autism disorder however labelled and ignores the possibility that the the ASD deficits are just components, differing in severity and expression, of intellectual disability. An Italian study has looked at the relationship between Intellectual Disability and called for more research of that relationship:

Psychiatry Unit, Department of Neurological and Psychiatric Sciences, University of Florence, Hospital of Careggi, Florence, Italy. gplamalfa@videosoft.it

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.
METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

Conclusion:


With great respect to Dr. King and the DSM5 NDD work group I submit that the proposed Autism Spectrum Disorder wording of the DSM5 along with the Intellectual Developmental Disorder clearly operate to remove those with Intellectual Disability from the autism spectrum.  I have no way of assessing the motivation for this change with any certainty. I do not really see the explanation offered by Dr. King as providing a coherent rationale for such a fundamental change. Some critics of the previous DSM-IV changes including Dr. Allen Frances have expressed regrets about the unintended consequences that flowed from that last revision. I can really see no good coming to persons with autism and intellectual disability who will no longer be considered autistic because mandatory criterion A can be accounted for by general developmental delay.  With no intent to insult or engage in confrontation it looks more like the intent is to make life easier for doctors in making autism diagnoses without having to explore the more complicated aspects of a diagnosis when intellectual disability is present.  It also makes it easier to calm the fears of those with Asperger's diagnoses who worried about being lumped together with those with autism in the new autism spectrum disorder. What is not at all clear is how this really helps in any way  those with autism and intellectual disability.

I ask this working group to reconsider its decision to add language excluding intellectually disabled from the proposed Autism Spectrum Disorder in the DSM5.

Respectfully,

Harold L Doherty
Fredericton, New Brunswick, Canada

13 comments:

Claire said...

Excellent,Harold. Thank heavens you are a man of action. We can only hope your letter will have an effect...and prompt others to write as well.

Autism Reality NB said...

I hope my letter will have an effect Claire but I am not overly optimistic.

From my perspective there is no valid reason to include in the proposed wording of the DSM's New Autism Spectrum Disorder wording which will exclude the intellectually disabled, especially not given the very close numerical association between ID and Autism prior to the addition of the Asperger's Disorder diagnosis to the Pervasive Developmental Disorder category of the DSM-IV.

When the history of autism in the DSM is looked at it seems that the APA has essentially redefined autism by diluting it, adding more persons who are lightly affected (Aspergers) and subtracting those at the severe end of the spectrum who are overwhelmingly intellectually disabled.

I see no good health reason to do this and no good research reason. It does not add to our understanding of autism and the APA knows that. Research now such as the fMRI brain scans routinely exclude low functioning, intellectually disabled autistic subjects.

This substitution of Aspergers for Autistic Disorder in our definition of autism appears to be a fait accompli which serves the interests of some professionals but not the interests of the severely autistic with intellectual disability.

Apart from my blog I know of no one else who has even raised the issue prior to Lisa Jo Rudy's recent article. (other than some blogs that responded with hostility to my commentaries on the subject). The APA has not brought this significant change to public attention and probably is closed to any change of heart on this issue.

Despite my pessimism I posted my concerns so that there is at least one voice putting those concerns fully on the public record. What they are doing is wrong and I will not remain silent while they do it.

farmwifetwo said...

I can't see how they can prove that ICD and ID can be mutually exclusive?? You can't prove ID when someone has ICD.

I don't know how much Connor talks at this time but over the last year Russ' ability to tell us things has increased dramatically. Unfortunately, when the ACS arrives on Wed we'll probably be "too verbal" - insert eye-roll. So, what his actual ID level?? His interpretations, following of instructions, amazing use of google to find things he's interested in... yet, unable to answer wh questions with more than a "yes, no" will automatically fail him in an IQ test.

Some examples of his speech are looking at the calendar, looking at you and saying "Wii games". Parental reply "yes, Russ on Mon we go to the library for Wii games." Or last week in his pool, big tears, rubbing eyes, and when asked to open them a "NO!!" and then rub his head and said "Cold!"... Ice cream headache = water up the nose.

This is autistic speech per every SLP we've ever seen. This isn't a delayed speech. According to my eldests last Dev Ped the eldest had delayed speech since it was developing "normally" - although the "crap" that comes out of his mouth at times makes it "autistic" but he is fluent. Is this what they are looking for under their SCD?? Or is this considered a developmental issue??

Excellent letter. Very interested in the reply you get. I'd like to know where I stand before it comes into play so I know how to manipulate things to keep our services etc.

Just when you think you're finally ahead of the game they toss you another curve, eh?? Sigh.....

Lisa Jo Rudy said...

Harold - just an FYI - I didn't talk directly to Dr. King. I sent a list of questions to the PR person for the APA, she forwarded the questions to Dr. King, and he prepared the answers.

In other words, I don't think he'll have a clue who I am.

I know that's not the point of your communication with the APA - just wanted to make you aware. And I will be VERY interested to hear the answers you receive (assuming that you do receive answers).

I agree that the wording is pretty questionable, and I honestly don't know what's being expressed by the guidelines. I understand your perspective, but just hope that you're mistaken.

Lisa
www.autism.about.com

Lisa Jo Rudy said...

BTW - on the DSM-5 overall, I am not sure that you're correct that more high functioning people will wind up on the autism spectrum than every before.

I have the sense that an awful lot of people now living with Aspergers and PDD-NOS labels will NOT fit on the spectrum with the new criteria.

IMO, the new criteria are so focused on perseveration and sensory issues that ASD becomes almost identical with OCD! Certainly, I have serious doubts that my own son will wind up on the spectrum after 2013, since his issues are mainly social/language/learning and NOT a need for sameness, sensory issues, etc.

Lisa
www.autism.about.com

Autism Reality NB said...

Lisa I also hope I am wrong about the wording of the DSM5 proposed autism spectrum disorder.

Bullet said...

Well, the DSM V is certainly clumsily worded, but I think I see what they are trying to say. If you state, for example, that your 2.5 year old child is not talking, you encounter lots of people recounting how THEIR child wasn't talking at two and a half and how they then starting talking a while later. A speech delay, for example, in a toddler is unfortunate, but it does not always indicate autism. However, if this 2.5 year old does not COMMUNICATE, does not, for example, point to things that interest them, or look to others for a reaction, then that is more suggestive of autism than simply an absence of speech.
Perhaps it would be better if the DSM V stated instead that the social communication difficulties were not SOLElY accounted for by general developmental delays.

Dennis Dixon, Ph.D. said...

Hi Harold,
The entire point of a diagnostic system is to classify a variety of symptoms and signs into what seems to be the underlying cause. Any system that attempts this will run into the problem of having members of the class vary in how well they really fit that classification. So, one of the things that they do to help prevent misclassification is to put in this “double-checking” at step one. If you look across the entire DSM you will notice that almost every disorder has the qualifier of “not better accounted for by…” such as part B of major depressive disorder (http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=44 ). In the case of Depression, they want to be sure that the actual cause of the observed symptoms is not Shizoaffective Disorder, which can mimic the symptom presentation but presumably has a different underlying cause. In the same way, while Autism Spectrum Disorder and Intellectual Disability are highly comorbid, they are presumably separate things. Many people with ASD have both ASD and ID diagnoses, which is a point you have made a number of times. It is problematic though to refer to them as the same thing.

Now I could be wrong about how the revisions will be applied, but the typical way to approach the clinical diagnosis is to look at all of the symptoms and then to parse them into what accounts best for them. Some symptoms will be placed into the ID pile, those that remain (not accounted for by ID) will still need to be explained, and if ASD is the right explanation, then they are placed into that pile. If the individual meets criteria for both ID and ASD then they would receive both diagnoses.

The watering down of diagnostic criteria can occur from both directions. First, by making the criteria so loose that anyone can receive the diagnosis. This would result in huge numbers of “mild” ASD cases and relatively few “severe” case. The other way though is to water it down by allowing individuals with other disorders to also receive the ASD diagnosis. For example, none of us would have a problem with an exclusionary criteria to ensure that people with depression are not misclassified as ASD, because we automatically see them as distinct. However, because there is a good deal of overlap between ASD and ID symptoms, we may take issue with the exclusionary criteria. I suggest that if we take issue with it, it is because we’ve essentially assumed that ASD and ID are the same thing.

When applied, this criteria may actually do what I’ve read in your posts many times is important to you: to not let those with mild or high functioning forms of ASD to take over the diagnosis and marginalize individuals like your son. This criteria will ask “is what you are observing the result of autism or the result of developmental delay?” When applied correctly, this will remove those with mild DD who were misclassified as ASD and watered down the diagnosis in that direction. It will also remove those with severe ID who do not also have ASD symptoms and thus watered down the diagnosis/specificity of “Autism”.

By double checking that the symptoms a clinician sees in a patient are not better accounted for by some other diagnosis, the clinician is ensuring that whatever diagnoses are applied to the individual fit the individual. This criteria requires the clinician to consider what is the cause of the symptom.

Dennis Dixon, Ph.D. said...
This comment has been removed by the author.
Autism Reality NB said...

Dr. Dixon

I thank you for commenting on this post. I respect the work you and your organization do to help autistic children. Having said that I am, respectfully, still in disagreement with your assessment of the effect of the wording of the DSM5's new Autism Spectrum Disorder.

One fundamental point you overlook, or give too little weight to, is the requirement that EACH of criteria A,B,C,D MUST be met. That will in my humble opinion lead to the exclusion of many and perhaps all persons with intellectual disability form receiving an ASD diagnosis.

It is not a question of putting criteria A,B,C and D in a pile and seeing what diagnoses best apply. EACH must be present for an ASD diagnosis. Thus failure to meet criterion A by itself will lead to a rejection of ASD diagnosis. When a persons is intellectually disabled they will suffer from general developmental delay by definition and they will, again by definition, have social deficits see the definition of IDD A00 in the DSM5. What would distinguish my son, to pick an example, as being autistic, are his behaviors such as his unusual persistent, perseveration. That behavior would not necessarily result in an autism diagnosis though because EACH criterion must be met for an ASD diagnosis and the social communication and interaction will be easily accounted for by general developmental delay which will not in the case of someone with such delay be easy to describe as being attributable to autism rather than the general developmental delay.

Respectfully,

HLD

trainspotter said...

Excellent letter Harold, and you are right that we should be concerned about how these changes can/may impact our children.

My daughter was in the IBI program (in Ontario) after sitting on a wait list for 3 years. She was removed from service 1.5 years later, despite some outstanding progress, because she flunked her 45 minute cognitive test and was too low-verbal to meet the verbal bench marks. And of course because she "flunked out" of IBI, the school board has no reason to believe she is "teachable" either (they don't look at where she was BEFORE the program). She may have ID or maybe she's JUST severely autistic but the professionals aren't worried about the distinction... "tomato- tomatoe, potato-potatoe".

Two years ago, I (and a couple other parents) had a meeting with Minister Broten to discuss the matter of "autism services, the importance of good service across the continnum, and the many pitfalls" and although MB seemed very receptive to the issues face- to-face, I have seen little improvement- at least for the lower-functioning children. In fact, most children like my daughter don't even qualify for IBI now and they're being pushed off onto a school board that lacks qualified teachers.

This new wording only makes it easier for those who don't assign any value to the 'more challenging' children, to go on disregarding them. The good news is the stigma that goes along with autism is lifting (and will lift much faster when they dump the low-functioning). The bad news (for us) is the stigma that goes with ID is NOT lifting and probably never will.

Ironically, it's the parents who need support the most that are far too stretched to advocate for themselves. I believe that those of us who see the challenges, and have the ability to fight, need to do so. Keep up the good work! I'll do what I can here.

Dennis Dixon, Ph.D. said...

Harold - your point is well taken. I'm going to have to go back and take a closer look. I appreciate the dialogue.
Dennis

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After reading this I thought it was very enlightening. I appreciate you taking the time to put this piece together. Once again I find myself spending way to much time both reading and commenting. But who cares, it was still worth it!