Autism, Intellectual Disability & Environment: Children of Immigrants in Sweden At Greater Risk of Developing Autism with Intellectual Disability

Swedish Flag by Matti Mattila 

A major Swedish study offers uncomfortable news to the DSM-5 team trying to pretend there is no relationship between autism and the intellectual disability which affects the vast majority of those with classic Autistic Disorder. It will also be disconcerting  to those who devoutly believe that autism is 100% genetic. The study finds that children born of immigrants to Sweden had an increased risk of developing autism with intellectual disability. The study authors also conclude that autism is governed by environmental as well as genetic factors:

A major register study from the Swedish medical university Karolinska Institutet shows that children born to certain groups of immigrants in Sweden had an increased risk of developing autism with intellectual disability. The study includes all children in Stockholm County from 2001 to 2007, and brings the question of the heredity of autism to the fore.

"This is an intriguing discovery, in which we can see strong links between a certain kind of autism and the time of the mother's immigration to Sweden," says principal investigator Cecilia Magnusson, Associate Professor of epidemiology at Karolinska Institutet. "The study is important, as it shows that autism isn't governed only by genetic causes but by environmental factors too."

The study, which is published in the scientific periodical The British Journal of Psychiatry shows that children of immigrant parents, particularly from countries of low human development, are disproportionately likely to develop autism with intellectual disability, a connection that appears to be related to the timing of migration rather than complications in childbirth. Children, whose mothers migrated just before or during pregnancy, ran the highest risk of all.

"At this juncture we can but speculate about the causes, but our assumption is that environmental factors impacting on the developing fetus, such as stress, new dietary habits or infections, could lead to the development of autism with intellectual disability," says Dr Magnusson.

A Real Hero: Australian Cameraman Glenn Edwards Dives Into Creek and Saves Autistic Boy

Autism news is seldom this good.  Australian Nine Network cameraman Glenn Edwards dived into a swollen creek and saved an autistic boy, missing for 16 hours, from a swollen Creek. The story at CabooltureNews  quotes Mr. Edwards extensively and is very uplifting.

Well done Mr. Edwards.  Very well done!

Lisa Jo Rudy Does A Bettelheim, Demeans ABA Parents While Pushing Her New Autism Book

Lisa Jo Rudy and I seldom, if ever, agreed on autism issues while she was the host of the About Autism web page. Lisa Jo has a high functioning autistic son and leans towards a Neurodiversity perspective on most autistm issues while my son is severely autistic and I have NEVER been accused of buying into Neurodiversity ideology. I did, at one time,  actually praise Lisa Jo Rudy though for her courteous approach to me and others with whom she disagreed on autism issues:

"About.com Autism by Lisa Jo Rudy is a corporate blog written by a parent who shares a neurodiversity perspective but tries honestly to present all sides of autism issues objectively and with impeccable courtesy."

Now that Lisa is no longer the host of the About.com Autism page though she appears to be taking a new approach to discussing autism issues. She has done a  Full Bettleheim in order to promote her new book "Get Out, Explore, and Have Fun: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities."

In promoting her new autism book Lisa Jo demeans parents who employ evidence based ABA therapy to help their autistic children by actually stating that their resort to ABA therapy for their children is more about dumping their kids with the therapists and freeing themselves up to go shopping than in helping their autistic children. In a Wicked Local Cape Cod article linked by Autism Speaks "In the News" section the following segment appears:

“Rudy said although the most common form of autism therapy is Applied Behavior Analysis (ABA) she opted for another method.“The ABA recommendation is for 40 hours a week and it’s more about handing your child over to a therapist while you go to the grocery store,” she said. 

Rudy discovered the Greenspan Floortime Approach, developed by the late Stanley Greenspan, which focuses on parent and child interaction.”

Bettleheim's refrigerator mom's theory essentially blamed lack of parent child interaction for causing children to become autistic.  The theory was in fact a fantasy with no evidence in support but it was widely accepted by the psychiatric/psychological professionals for many years and caused great harm to both autistic children and their parents.  Although Bettleheim's fantasies have long been discredited it appears Lisa Jo is still reading his books when she suggests that parents seek ABA therapy not because it is the most evidence based effective intervention for autism but because, according to Lisa, it frees the parents up to go shopping.  Lisa of course prefers the 

Greenspan Floortime Approach because, according to her, it focuses on parent child interaction.

How Lisa Jo knows anything about ABA as someone who didn't "opt for" ABA for her child has always puzzled me.  What is most interesting though, apart from her new willingness to demean ABA oriented autism parents while promoting her book is her failure to mention the different evidence bases for the effectiveness of the two approaches as autism interventions.

Many credible authorities have recommended ABA as the most evidence based effective intervention for autistic children including the office of the US Surgeon General and the Association for Science in Autism Treatment.  The American Pediatric Association issued the following statements about ABA and Floortime therapies in December 2007 noting the abundant evidence over several decades in support of ABA as an autism intervention and the scarcity of quality evidence in support of Floortime and similar relationship/developmental models:

ABA

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

Floortime

"Relationship-focused early intervention models include Greenspan and Wieder's developmental, individual-difference, relationship-based (DIR) model,⁵⁵ Gutstein and Sheely's relationship-development intervention (RDI),⁵⁶ and the responsive-teaching (RT) curriculum developed by Mahoney et al.^57,58 The DIR approach focuses on (1) “floor-time” play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate “biologically based processing capacities,” such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures⁵⁵) and a descriptive follow-up study of a small subset (8%) of the original group of patients.^59"

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, Published online October, 29, 2007, Reaffirmed by the APA, September 2010.  

Lisa Jo Rudy has chosen to depart from a previously courteous, objective approach to discussing autism issues, unfortunately for autistic children whose parents abandon ABA efforts based on Ms Rudy's personal prejudices.  Most parents demeaned by such comments will not take them too seriously because the Bettelheim cold mother's fantasy has been widely exposed as nonsense (outside of France anyway).  The autistic children  of parents who look to Ms. Rudy for guidance though may not be as fortunate.

Volkmar Says Many Intellectually Disabled May Be Excluded from DSM-5 Autism Spectrum Disorder Diagnosis

When I first pointed out that the DSM-5 New Autism Disorder would exclude intellectually disabled I was ignored by most, insulted and mocked by others.  Some were annoyed. When Catherine Lord confessed that the intellectually disabled were the real target for exclusion very few mentioned the exclusion of the intellectually disabled from the DSM-5 autism definition.  Certainly not the New York Times and other prominent Mainstream Media institutions that have wrung their hands over the possible exclusion of the very high functioning Autism ruling class.  

When Fred Volkmar, who kick started the current uproar over the possible exclusion of some with high functioning autism and Aspergers, mentioned in a Yale Daily News interview the possible DSM-5 exclusion of many of the intellectually disabled it did not merit any response from the MSM:

"In its next manual on mental disorders, the American Psychiatric Association plans to issue a single set of diagnostic criteria that will merge the four types of disorders on the autism spectrum, which include autism and Asperger syndrome. Although no current patient will be affected by the new rules, research by Yale Child Study Center Director Fred Volkmar suggests that the revision may disqualify a large number of intellectually disabled patients from receiving a diagnosis of autism spectrum disorder in the future."  [Underlining added for emphasis - HLD]

The autism spectrum is not just a spectrum. It is a caste system with the intellectually disabled occupying the lowest rung unworthy of concern or comment from the mainstream media or feel good, autism is beautiful, Neurodiversity variety autism advocates.

Intellectual Disability and the DSM-5 Autism Do-Over: Catherine Lord Then (2003) and Now (2013)

Catherine Lord, and her highly influential views about autism and intellectual disability seem to have changed a bit since the 2003 article published below and the DSM-5 Autism Do-Over which will be published in 2013.  For those who quibble over the reference to 2013 as being "now" they should know that Dr. Lord and the DSM-5 subcommittee have no intention of changing any of the wording of the DSM-5 Autism Do-Over which will take effect in 2013. For the intellectually disabled  the future is now, they are no longer part of the autism spectrum. 

As Dr. Lord has already confessed, the DSM-5 committee of which she is a member has already targeted the intellectually disabled for exclusion  from the DSM-5's New Autism Spectrum Disorder. That confession is also confirmed by the exclusion language in mandatory criterion A of the DSM-5 which excludes an autism diagnosis where the social communication deficits are accounted for by general developmental delay. The writing is on the DSM-5's purple wall.

If there is any change at all in the wording of the DSM-5 Autism Do-Over it will be at the higher functioning end and will favor inclusion of more persons who are least affected by an "autism" disorder.  Persons with high functioning autism and Aspergers have powerful allies in the major mainstream media institutions; allies like Amy Harmon of the New York Times.  For the MSM and Hollywood autism is Aspergers. 

The intellectually disabled who comprise the vast majority of those with DSM-IV Autistic Disorder are never mentioned in those highly influential circles and the recent firestorm over exclusion from the DSM-5. The uproar is over the possible exclusion of the highest functioning persons with an ASD, persons who can work in rock bands, run successful businesses, graduate from university, cavort with New York media and New Jersey and Washington political figures and committees.

Dr. Catherine Lord and her DSM-5 committee will continue with their plans to separate intellectual disability completely from the autism spectrum as though there were no connection between the two.  But Dr. Lord did not always see the intellectually disabled as a lower caste to be excluded from the autism spectrum rooming house as illustrated in this 2003 journal article abstract:

Evidence for Latent Classes of IQ in Young Children With Autism Spectrum Disorder


Jeffrey Munson, Geraldine Dawson, Lindsey Sterling, Theodore Beauchaine, Andrew Zhou, Elizabeth Koehler, Catherine Lord, Sally Rogers, Marian Sigmand, Annette Estese, and Robert Abbotte

Autism is currently viewed as a spectrum condition that includes strikingly different severity levels; IQ is consistently described as one of the primary aspects of the heterogeneity in autism. To investigate the possibility of more than one distinct subtype of autism based on IQ, both latent class analysis and taxometrics methods were used to classify Mullen IQs in a sample of 456 children with autism spectrum disorder. We found evidence for multiple IQ-based subgroups using both methods. Groups differed in level of intellectual functioning and patterns of verbal versus nonverbal ability. Results support the notion of distinct subtypes of autism that differ in severity of intellectual ability, patterns of cognitive strengths and weaknesses, and severity of autism symptoms.


In 2003 Dr. Catherine Lord (and Dr. Geraldine Dawson of Autism Speaks) saw the intellectual ability patterns as a significant basis for distinguishing subtypes of autism that differ in severity.  Apparently her views have changed ... dramatically ... since then.  To the great detriment of the vast majority of those with Autistic Disorder and intellectual disabilities.

Conor Turns 16 And Enjoys Some Birthday Cake Therapy

Conor turned 16 today.  No autism issues.  Just lots of fun. No swimming with dolphins therapy or riding horse back across Mongolia.  Conor has enjoyed some Birthday Cake Therapy though and has requested Pizza Therapy for supper.  The one rule we follow on Conor's birthday is to spoil him rotten.  

Bad Parent Syndrome?

What Does Autism Awareness Mean As The Great DSM-5 Autism Do-Over Approaches?

What exactly is Autism Awareness and what does it accomplish?

Can anyone, Autism Speaks, or any other autism organization, say with a straight face that they are promoting autism awareness when the official criteria for determining what autism is, or is not, changes every 15-20 years?  Can anyone say what autism is when the vast majority (CDC expert Dr. Marshalynn Yeargin-Allsopp) of those with autistic disorder, those with intellectual disabilities, are rendered a minority, albeit a large minority at 41-44% (CDC surveys) , with the publication of the DSM-IV and when that large minority are removed from the autism "spectrum" entirely with the publication of the DSM-5?

Can anyone pretend to be talking about the same autism when some are talking about severely impaired and challenged children and adults who lack any significant communication skills, suffer epileptic seizures and engage in dangerous Self Injurious Behavior while others, especially mainstream media like the NYT,  bemoan the challenges faced by very shy high functioning persons who function well in rock bands, businesses and quasi-governmental organizations but heaven forbid find, not unlike much of humanity, that personal intimacy with a person to whom one is attracted can be an awkward, learning experience during adolescence?

Can anyone stand up in good faith in this day and age and say that autism is an entirely genetic disorder when in fact not all identical twins both have autism when one does? Or when researchers find multitudes of genetic bases for autism but no single genetic characteristic of autism? Even after the overwhelming majority of autism research dollars have been funneled for years into a bottomless pit of genetic autism research?

And how about the French psychoanalysts who in 2011-2012 are promoting nonsensical, non evidence based, non reality based autism causation theories, including the "refrigerator mothers" theory of autism causation,  a dangerous harmful work of fiction that never did have an evidence basis? And they have the unmitigated audacity to sue Sophie Robert for exposing their incompetent, archaic nonsense to the world?


Unfortunately the gross autism incompetence of many in the French psychoanalytic profession is about the only thing that remains clear in the world of autism awareness. The very definition of autism has now become contentious. The impact of new diagnostic definitions on epidemiological based autism research can only be imagined but, if past is prologue, will not be helpful in increasing our knowledge of autism causes. 


I do not mean to discourage anyone from engaging in raising autism awareness.  But in this time of the great DSM-5 Autism Do-Over please be clear about what you mean when you say ... autism. 

DSM-5 Autism: Globe & Mail Ignores Invisible Intellectually Disabled Autistics, Dr. Yeargin-Allsopp's Vast Majority

Canada's Globe & Mail is late to the discussion, once again, of major autism issues. This time, Parents of autistic kids fear diagnostic changes will mean reduced services, the Globe is parroting the concerns of the major US corporate media over the possible impact of the DSM-5's New Autism Spectrum Disorder on persons with Asperger's and High Functioning Autism.  Like the US corporate media the Globe simply ignores the probable impact, on intellectually disabled autistic persons of the express exclusionary language of Mandatory Criterion A of the New Autism Spectrum Disorder.

Mandatory Criterion A of the New Autism Spectrum Disorder states:


Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people.

The highlighted expression will exclude some from an autistm diagnosis where Criterion A can be accounted for by general development delay.  General developmental delay is not a separate category in the DSM-5 at least not under that title. It is found under the diagnosis  Intellectual Developmental Disorder (IDD):

A 00 Intellectual Developmental Disorder

• Proposed  Revision
• Rationale
• Severity
• DSM-IV

Updated July 5, 2011

Intellectual Developmental Disorder is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. All three of the following criteria must be met.

A.         Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience.Intellectual Developmental Disorder requires a current intellectual deficit of approximately 2 or more standard deviations in Intelligence Quotient (IQ) below the population mean for a person’s age and cultural group, which is typically an IQ score of approximately 70 or below, measured on an individualized, standardized, culturally appropriate, psychometrically sound test. 

            AND

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. The limitations result in the need for ongoing support at school, work, or independent life. Thus, Intellectual Developmental Disorder also requires a significant impairment in adaptive functioning. Typically, adaptive behavior is measured using individualized, standardized, culturally appropriate, psychometrically sound tests. 

            AND

C.         Onset during the developmental period.  (Underlined dark bold highlighting added - HLD) 

Impairment in communication and social participation will support a diagnosis of

Intellectual Developmental Disorder. A person with Intellectual Developmental

Disorder and deficits in social participation and communication will by definition have those deficits accounted for by his/her IDD and will be excluded from an autism diagnosis by operation of the exclusionary wording in Mandatory Criterion A of the DSM-5 Autism Spectrum Disorder. 

None of the spokespersons for the DSM-5 Neurodevelopmental Workgroup Committee have explained how these two provisions can exist in the DSM-5 without excluding  intellectually disabled persons from an Autism Spectrum Disorder diagnosis.  To the contrary Dr. Catherine Lord has already confessed a clear intent on the committee's part to exclude from an autism diagnosis those with intellectual disabilities. 

The Globe & Mail, in fairness, is not a frequent reporting source on autism disorders.  It is probably just following the corporate media trend in the US ... ignoring those described by CDC autism expert Dr. Marshalyn Yeargin-Allsopp as the vast majority of those diagnosed with DSM-IV Autistic Disorder (AD) ... those with AD and intellectual disabilities.

Autism leader helps UNB remain at forefront of autism intervention training

The University of New Brunswick has engaged a renowned expert to examine best practices in autism treatment.

Dr. David Celiberti is president of the Association for Science and Autism Treatment. His report, commissioned by UNB’s College of Extended Learning (CEL), examines program quality indicators already in place in other jurisdictions. The findings will be used to provide quality assurance for UNB’s program and to help UNB remain a leader with its Autism Intervention Training program.

“At UNB’s College of Extended Learning, we have great programs in place,” said CEL Executive Director Lloyd Henderson. “The methodology taught in our program is an Established Treatment as per National Autism Centre’s (NAC) standards.”

The NAC published a National Standards Report which classifies autism intervention treatments in a range from Established (known to be effective) and Emerging (some evidence of effectiveness), to Un-established (no sound evidence of effectiveness) and Ineffective (having no beneficial effects).

“We want to continue to lead in this area by taking a global approach, examining best practices, and making sure we continuously improve to offer the best intervention training possible. We monitor emerging treatments and will incorporate them into our programs if and when they are deemed established,” said Henderson.

“Autism treatment providers and program administrators should be required to report and justify why they are bypassing established treatment,” Celiberti said, in his report. “Parents should be educated and fully informed about which aspects of their child’s treatment are comprised of established treatment and which are not.”

The findings in the report will be used to establish a protocol for the CEL’s training program. It will also be made available to those involved in the administration and support of autism programs across the province and throughout Atlantic Canada.

“In light of the overwhelming body of growing intervention methods that parents and professionals are presented with on a daily basis, UNB’s intentions in undertaking this research project were to identify evidence-based proof of the support methods being used to treat children with autism,” Henderson said. “Thanks to Dr. Celiberti, we now have the information we need and are examining our programs to see if there are areas we can continue to improve.”

For more information on UNB’s program, or to read the report, visit: www.unb.ca/cel/intervention/index.html

APA Ignores Concern Over DSM-5 Autism Exclusion of Intellectually Disabled

On July 17 2011 I made a submission to the Neurodevelopmental Disorders DSM Work Group of the American Psychiatric Association.  My submission dealt at length with the exclusionary language added to Mandatory Criterion A of the DSM-5 Autism Spectrum Disorder, language which targets for exclusion from autism diagnosis of persons with intellectual disability.

Since that submission the NYT's Amy Harmon who, like most of the mainstream media when reporting on autism, focuses on high functioning autism and Aspergers, questioned the workgroup's Dr. Catherine Lord about the possibility that the DSM-5 ASD would exclude many higher functioning autistic persons. In the course of that interview Dr. Catherine Lord confessed that there was nothing to worry about that the real exclusionary target of the DSM-5's proposed Autism Spectrum Disorder diagnosis was the intellectually disabled:

""Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the [DSM-5 autism]revisions, said that the goal was to ensure that autism was not used as a “fallback diagnosis” for children whose primary trait might be, for instance, an intellectual disability or aggression." [Bracketed terms added for context - HLD]

- Dr. Catherine Lord, as reported by NYT High Functioning Autism/Asperger's reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

Yesterday I received an email form response to my July 17 2011 submission from David Kupfer, M.D.,Chair, DSM-5 Task Force and Darrel Regier, M.D., M.P.H.,
Vice-Chair, DSM-5 Task Force. I do appreciate receiving a reply from the DSM-Task Force even though it is a form reply. The reply itself indicates that the DSM-5 is aware of public concerns about possible exclusion of  persons with high functioning autism and Aspergers from a DSM-5 autism disorder diagnosis. (The form reply refers the reader to an article by work group member Professor Francesca Happé "Why fold Asperger syndrome into autism spectrum disorder in the DSM-5?").   Unfortunately the form reply makes no mention of the express exclusion of persons whose "primary trait" is intellectual disability.

For the DSM-5, as for the mainstream media, autism means high functioning autism and no longer includes CDC autism expert Dr. Marshalyn Yeargin-Allsopp's vast majority of intellectually disabled. The intellectually disabled, the only group expressly mentioned for exclusion from  the DSM-5 autism disorder diagnostic criteria, is not mentioned in the work group's form reply:

(1) The APA Neurodevelopmental Disorders DSM Work Group Form Reply

Dear concerned respondent to the DSM-5 Autism proposal: 

Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5.  We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need. 

The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind. 

There are clinical and scientific reasons for improving the accuracy of diagnoses.  All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients.  In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happé, on the changes to Asperger's disorder can be found on the Simons Foundation Autism Research Initiative website.

We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at www.dsm5.org where further information on ASD is available under the "Proposed Revisions" tab. This Web site will be revised and opened for public comment for a third a final time late this spring.  Once again, thank you for your input.

David Kupfer, M.D.
Chair, DSM-5 Task Force

Darrel Regier, M.D., M.P.H.
Vice-Chair, DSM-5 Task Force 

(2) My Submission to the Neurodevelopmental Disorders DSM Work Group
American Psychiatric Association

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:

"Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF.

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

Totally Unnecessary Danger? Another Autistic Child Left Alone on School Bus

Surely, of all the dangers that confront many autistic children the simplest danger to eradicate, the one that doesn't have to exist,  is the danger of an autistic child being left alone on a school bus, van or other vehicle while parked in scorching heat or while it departs for other destinations.  Yesterday though, as reported on Newsday,  a 6 year old autistic boy in Nassau, Long Island, was left on a school bus unattended that left before school personnel became aware he was missing.

There are many problems involving autistic children including self injurious behavior, serious food aversions, wandering and lack of understanding of every day risks such as automobile traffic that can pose serious risks to the well being of autistic children.  One that does not have to happen though is the risk that an autistic child will be left unattended on a bus or other vehicle. 

A simple but mandatory  check list and  reporting system with confirmation from the persons receiving the child into their care that the child had been received being required before the vehicle is permitted to depart should be all it takes.  Care and attentiveness should eliminate all such situations from occurring. 

How autistic children end up being placed in this unnecessary danger is a mystery to me.

Autism Vaccine War: Is Scientific Inquiry Being Suppressed?

Dr. Beatrice Golomb's presentation This Is Your Brain On Politics pulls no punches in its critique of conflicts of interest, bias, censorship and intimidation involving pharmaceutical companies, health authorities and academic institutions and publications.  Professor Golomb's presentation includes commentary on pressure tactics, including intimidation, used by some pharmaceutical industry representatives to silence criticism of their products and the research that accompanies them.

Professor Golomb's presentation provides an interesting framework with which to consider the continued pressures exerted on Dr. Andrew Wakefield over an article he wrote in 1998 for which, in 2011, he was denounced, by journalistic decree,  as being guilty of fraud.  A refutation of the Wakefield fraud allegations by research microbiologist David Lewis was published in the BMJ  but has not received the major US or world media attention that the original fraud allegations attracted.

An even more recent  demonstration of pressure on those who question or study issues pertaining to vaccine safety has arisen in response to an article on vaccine adjuvants published by two UBC Ph.D.'s.  In Tom Sandborn's article in the Vancouver Courier Responses to UBC vaccine paper a problem for free scientific inquiry and expression UBC researchers raise questions, experience backlash Sandborn describes what appears to be an effort to suppress publication of peer reviewed journal articles which raise potential vaccine health issues. None other than Dr. Paul Offit is reported to have weighed in with comments which appear to suggest that studies or articles criticizing vaccine safety in any way should not be published:

"Shaw, who is on faculty at UBC with the Departments of Ophthalmology and Visual Sciences and Experimental Medicine and the Graduate Program in Neuroscience, and his colleague Lucija Tomljenovic have recently published a carefully parsed and thoroughly peer reviewed paper on vaccine safety, without a doubt one of the most controversial topics in medicine today. Despite the cautious and professional tone of the paper, and despite the authors' clear statement that their findings are not in themselves decisive, only pointing to the need for more extensive research into vaccine safety, the paper, published in November 2011 in the Journal of Inorganic Biochemistry which describes correlations and possible causal links between increased exposure to aluminum salts used as adjuvants in vaccines and increased levels of neurological trouble in exposed populations, seems to inflame angry and punitive responses in some quarters.


For example, when I discussed the Tomljenovic/Shaw paper with Dr. Paul Offit, a professor at the University of Pennsylvania, a strong proponent of vaccines and the developer of a successful new vaccine that has made him a multi-millionaire, he told me that the paper "should never have been published," despite the fact it was rigorously peer reviewed before publication. (Like many who want to insist that all questions of vaccine safety have been settled, Offit invokes the notorious Andrew Wakefield affair involving a now discredited and withdrawn paper published in The Lancet in 1998, which suggested a link between MMR vaccines and autism. Offit claims that paper is responsible for avoidable deaths as worried parents failed to vaccinate their children. Wakefield has recently filed a suit for defamation against Brian Deer, the investigative journalist whose work was central to the storm of criticism that surrounded the Lancet paper.)"

In the context of the autism vaccine war the late Dr. Bernadine Healy expressed confidence in the general safety of vaccines while talking about the need to explore possible vaccine impacts on susceptible populations. She also expressed confidence in public understanding of the value and importance of vaccines in protecting and promoting pubic health and safety while cautioning public health authorities against dismissing further scientific research on autism vaccine issues:

"There is a completely expressed concern that they don't want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. First of all, I think the public's smarter than that. The public values vaccines. But more importantly, I don't think you should ever turn your back on any scientific hypothesis because you're afraid of what it might show."

The concerns expressed by Dr. Healy about the suppression of scientific inquiry into vaccine autism issues by public health authorities appear to be supported by the attempts to suppress the publication of articles like that of the UBC professors published after rigorous peer review which pointed to possible issues with aluminum salt adjuvants in vaccines.  Dr. Offit, and others who wish to suppress such inquiry, claim to be afraid of ignorant members of the public who will react out of fear and refuse to vaccinate their children.  The attempts at suppression however give rise to an equally plausible hypothesis as suggested by Dr. Healy ...  that Offit and company are afraid of what such inquiry might show.

NOTE: As the author of this blog comment I advise that my children have received all recommended and mandatory vaccines and that I have received vaccines at different times including during the H1N1 panic two years ago. I recognize the importance of vaccines in public health and safety. I am, however, seriously concerned about the incessant attempts to suppress scientific inquiry of vaccine safety issues and the view that all possible connections between vaccines and autism spectrum disorders have been explored and "debunked" for all time.  

ABA Benefits for Autism: Association for Science in Autism Treatment (ASAT) Educates LA Times Alan Zarembo

The attached letter was written by ASAT Board member Sabrina Freeman Ph. D., and Secretary Florence DiGennaro Reed, Ph. D., BCBA-D to the LA Times Alan Zarembo who did such a poor job (in my humble opinion) reporting on autism issues in a recent LA Times series.  In the letter Freeman and Reed attempt to educate Zarembo about the scientific, evidence based benefits that ABA has been demonstrated to bring to autistic children.  

I don't know if a superficial mainstream media reporter is capable of  understanding the information presented in the letter or if he would make the effort to understand.  I applaud ASAT for trying to break through Zarembo's self constructed brick wall of ignorance and educate him about the evidence basis behind ABA, an intervention that has helped so many autistic children. 

ASAT Responds to LA Times Story “Families Cling to Hope of Autism Recovery”

Monday, January 30, 2012

Dear Mr. Zarembo:

We are writing to you regarding your article entitled, “Families Cling to Hope of Autism Recovery” (the Los Angeles Times, December 15, 2011). We appreciate your time and effort in highlighting the work of Dr. Lovaas and the larger field of applied behavior analysis. We especially appreciate your advocacy of science as the means to evaluate the effectiveness of any treatment.

While you acknowledge some positive benefits of applied behavior analytic treatment, your emphasis ignores a large body of research indicating that children who receive Early Intensive Behavioral Intervention (EIBI) benefit significantly relative to those children who do not receive EIBI. We ourselves acknowledge that there are gaps in the science of autism treatment, including EIBI; however, we respectfully disagree with your presentation of the outcomes. We are unaware of other treatment protocols that have been studied and replicated to the same degree as EIBI. Unfortunately, many other treatments are marketed as “cures” without evidence of benefit. As such, EIBI represents best practices for people with autism. While you rely on the AHRQ report in your article, we wish you had also highlighted that treatments based on the principles of applied behavior analysis have been endorsed by the U.S. Surgeon General,1 National Institutes of Health,2 the National Research Council,3 the National Standards Report4 published by the National Autism Center, and others. 5Although we agree that additional research is needed to develop and refine EIBI and other science-based approaches, your article leads readers to conclude that the high cost and burden of a forty hour-a-week requirement to replicate the positive outcomes from the scientific literature is too high a cost for society. We advocate for research funding to identify aspects of treatment that are most important for improving function. Until that time, though, children with autism deserve access to high quality treatments based on our current understanding of science.

The science of applied behavior analysis and its application to autism treatment are often portrayed inaccurately in the media. Unfortunately, we believe your story contributes to further misunderstanding and misconception. The potential risk is that caregivers will delay pursuing empirically-supported, effective treatment. We suggest that rather than advocate denial of effective autism treatment, we should acknowledge the true state of science in autism intervention and advocate for access to effective treatment by families. It is important for parents and caregivers to access accurate information regarding autism treatments so that they may make wise decisions for their children. For more information, please visit http://www.asatonline.org/resources/autismtreatments.htm.

Sabrina Freeman, Ph.D.
Board Member, Association for Science in Autism Treatment


Florence D. DiGennaro Reed, Ph.D., BCBA-D
Secretary, Association for Science in Autism Treatment


References 
¹U.S. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.
²Strock, M. (2004). Autism spectrum disorders (pervasive developmental disorders). NIH Publication No. NIH-04-5511. National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
³National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press.
⁴National Autism Center (2009). National Standards Report. Randolph, MA: National Autism Center.
⁵New York State Department of Health (1999). Clinical practice guideline: Report of the recommendations. Autism/pervasive developmental disorders, assessment and intervention for young children (age 0-3 years). Albany, NY: NYS Early Intervention Program.