An Enhanced Autism Group Home System and Center is Needed to Fill the Gaping Gap in New Brunswick's Autism Service Model

In ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" New Brunswick, Canada  was recently described by David Celiberti Ph.D., BCBA-D, President Association for Science in Autism Treatment as being a leader in the provision of autism services.

Responding to the referenced  title of a CBC article on the state of autism service delivery in NB Dr. Celiberti expressed the view, with which this humble father and autism advocate agrees, that  NB is a leader in providing evidence based effective preschool intervention and  education of autistic children.  Dr. Celiberti goes on, however, to point out correctly, as did the CBC article written by Paul McDonnell a leading New Brunswick autism expert, Professor Emeritus (Psychology) and clinical psychologist working with autistic children, that New Brunswick is still lacking in adult autism services. 

In fact New Brunswick has no autism specific youth and adult residential care system.  Instead NB autistic youth and adults who require residential care services are placed in general group homes with no autism specific staff and no professional autism specific expertise readily available.  For those who require autism specific treatment the situation becomes horrendous with some youth being placed on the grounds of correctional facilities, some youth and adults living in hotels, hospitals wards and psychiatric institutions. Some are exported out of the province and out of the country.  

In his CBC comments Dr. McDonnell provides clear direction on what is needed to fill the adult service gap in New Brunswick's autism service delivery model:

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family, or the community.


We can do much, much better.


We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.


That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.


Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.


The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

An enhanced autism specific group home system throughout the province with a major center, providing ongoing training, leadership and supervision, as recommended by Dr. McDonnell is exactly what is needed to fill the gaping gap in New Brunswick's autism service delivery.  Autism advocates, including me, have advocated for enhanced autism specific group homes and a center for several years but government has not responded.

In New Brunswick, parents, politicians and civil servants stepped up to the plate and became a leader in helping autistic children.  Surely we can do the same for our autistic youth and adults.  Surely we can provide decent, secure, modern living environments for our vulnerable autistic youth and adults in need.

Autism and Intellectual Disability: More Denial, More Stigma, This Time In Alabama

In Children with Asperger's could lose diagnostic identity we see still more evidence, this time in Alabama,  of the stigma attached to the fact that the vast majority of persons with Autistic Disorder, unlike those with Aspergers Disorder diagnoses,  also have intellectual disabilities or cognitive impairments. Once again the story tells of concerns held by some that those with Aspergers will be stigmatized by being lumped in with those with Autistic Disorder in the DSM-5  New Autism Spectrum Disorder. In expressing these concerns the subjects interviewed contribute to the stigmatization of those with Intellectual Disability generally and specifically to the many persons with Autistic Disorder and Intellectual Disability:

"It's difficult to say where Asperger's ends and autism begins," Mulvihill said.


That difficulty - and the stigma attached to autism - is partly why some adults with Asperger's are not happy about the proposed change in the DSM, Crane said. While those individuals on the high-functioning end of the autism spectrum might show only slight symptoms, those on the other end of the spectrum are profoundly affected by the disorder.


Being classified as autistic can make it even more difficult for high-functioning individuals to develop relationships with their peers.


Crane said despite their various challenges, autistic children are highly intelligent.


"These kids are definitely the scientists of tomorrow," said Crane, who established the Riley Center after her son was diagnosed with autism. "They're brilliant. That's why early intervention is so important."

The comments by Crane of the Riley Center are a perfect example of the denial that is so prevalent in any public discussion of Autistic Disorder. The main difference between Autistic Disorder and Aspergers is in the area of intellectual disability.  By definition in the current version of the DSM-IV a person with "autism" criteria AND Intellectual Disability will be excluded from an Asperger's Disorder (DSM-IV, Diagnostic Criteria for Asperger's Disorder  299.80)  diagnosis (as set out on the CDC web site):

"E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

I have written frequently on the refusal of so many parents, professionals and persons with very high functioning autism disorders to acknowedge the high rates of intellectual disability in persons diagnosed with Autistic Disorder as that disorder is currently diagnosed in the DSM-IV.  The 2006 Canadian Psychological  Association brief to a Canadian Senate committee examining autism stated that:

"Symptoms and Impairments:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. Persons diagnosed with Asperger’s Disorder have average to above average intellectual functioning."

The CPA figures with respect to Autism (Autistic Disorder) appear consistent with the CDC figures with respect to the entire autism spectrum:

"Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006."

The 41-44% figure for the entire spectrum includes those with Aspergers diagnoses who, by definition, do not have intellectual disabilities or cognitive impairment.  They are also approximate the numbers provided set out in the ICD-10 for persons with respect to Childhood Autism F84.0:

"F84.0 Childhood Autism

A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 
...
All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases."(Bold highlighting added - HLD) 

These figures contradict the denial of intellectual disability inherent in Crane's generalizations that "autistic children are highly intelligent", "these children are definitely the scientists of tomorrow"and "they're brilliant".  Such statements deny the reality of the close association between Autistic Disorder and intellectual disability and are clearly reflections of the stigma attached ... not to autism per se ... but to intellectual disability.  It is the connection between autism and intellectual disability that creates concern for many with Asperger's Disorder about merging Asperger's and autism in the DSM-5.  It is that frequently expressed and highly publicized concern that contributes to the stigmatization of those many persons with Autistic Disorder and Intellectual Disabilities. 

The US National Institute of  Mental Health states with respect to Autism Spectrum Disorders in the section  titled Problems That May Accompany ASD:

"Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests."

What is interesting about the NIMH comment is that it ties mental impairment to language disabilities, another area that distinguishes Autistic Disorder from Asperger's Disorder in the DSM-IV.  It is a relationship that is glossed over by those who wish to disavow the obvious relationship between autism and intellectual disability.  By contrast an Italian study, published in the Journal of Intellectual Disability Research has expressly underlined the relationship between autism and intellectual disability:

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. (bold highlighting added -HLD)

The denial of the Intellectual Disability connection to autism, as in Autistic Disorder, will be completed in the DSM-5 and will result in further stigmatization of those with Autism and Intellectual Disability.  It will also contribute to the trend to conduct "autism" research excluding persons with autism and intellectual disability the "vast majority" of those with autism as it is currently defined. The study reports in these cases tend to generalize their findings to the entire autism spectrum of disorders despite the exclusion of intellectually disabled autistic subjects.  The informed, mature  and enlightened approach of studying the connection between autism and intellectual disability suggested by the authors of the Italian study will never see the light of day.

The intellectual disabilities of so many with autism, and the very serious challenges they face,  will simply be ignored for fear of stigmatization. The Alabama example is only one of many examples of such stigmatization. 

There will be more.

Science in Autism Treatment Newsletter

The following E-blast, which I am happy to post here at Facing Autism in New Brunswick,  is from Josh Pritchard of the Association for Science in Autism Treatment:

Hello All!

We have all witnessed consumers enticed and distracted by the myriad of alternative treatments that have been put forth. Often, these treatments run counter to effective approaches and may deplete precious resources.  We believe that ASAT’s free e-newsletter may help. Newsletter recipients will stay informed of up-to-date science-based treatments, read about ASAT’s response to inaccuracies about autism treatment in the media, and learn how science can be used to inform decision making. 

If you’re at your computer and have a few moments, now might be a perfect time to sign up for the Association for Science in Autism Treatment’s free quarterly newsletter, Science in Autism Treatment.  You can sign up here: www.asatonline.org/signup

We have a new issue coming out soon – signup so that you’ll receive it first!

Our goal was to get our newsletter out to 6000 subscribers by the end of 2010.  We’re quickly reaching the end of 2010 – and only need a few more subscribers! Will you help us reach it?

If you’re unfamiliar with SIAT, it is a newsletter packed with information (20-30 pages per issue) that include things such as:

·       Is there science in that? [we take treatments proposed for autism and examine the scientific literature supporting it]

·      Consumer Corner [we feature a resource of interest to consumers]

·        

T Treatment  Summary [we choose a treatment proposed for autism and provide a very brief summary]

·       Clinical Corner [we have a clinician answer a specific question related to autism treatment]

·       Interview with those in the field [we interview a ASAT board members/volunteers, parents, and scientists in the field]  

·       Article reviews [generally 3 article reviews that provide a quick and easy review of articles germane to scientific treatment in autism]

·        

Upcoming Events that may be of interest to the reader

·       Book Reviews…

…and much more

Please also see http://asatonline.org/pdf/newsletter_ad.pdf If you are already signed up – we urge you to share this invitation with others that you think might be interested.  

We hope you are having a great holiday weekend!

Yours in Science,

Josh Pritchard

Co-Editor of SIAT

Kennedy Krieger Institute Uses ABA to Help Children with Autism Disorders

In Autistic children, families find a ray of hope from Kennedy Krieger Institute  APP.com/Asbury Park Press writer Shannon Mullen tells how the Kennedy Kreiger Institute uses ABA to help children with autism disorder and other behavioral and intellectual disabilities. The article features Alex Deluca a 13 year old autistic boy who was treated at the Kennedy Kriege Institute for serious behavioral problems including banging his head  so hard that he left gaping holes in walls. Public schools and a private autism school were unable to help Alex but his parents finally found help for him at the Kennedy Krieger Institute which uses ABA treatment and trains the parents to use ABA to help Alex and other seriously challenged children:

“The intervention involves teaching a whole new set of skills,” said Dr. Louis P. Hagopian, a psychologist and research scientist at Kennedy Krieger. “Part of it is teaching the child, but the other part is teaching the parent what to do.”

The institute’s approach is based on the principles of applied behavior analysis, or ABA, which is the science of human behavior. The parental training is “performance-based,” meaning parents have to master the techniques, with 90 percent accuracy, before they can bring their children home.

“They don’t fix him there,” said Bobbie Gallagher of Brick, a behavior consultant for New Horizons in Autism, a Neptune-based agency, who is overseeing the home therapy Alex receives almost every day. Gallagher’s son Austin, 18, spent 4 months at Kennedy Krieger.

“It’s not like he had a tumor removed, and now he’s all better,” she said. “They give you a plan to work on.”

Alex’s plan divides his entire day, at home and at school, into alternating blocks of time, during which he is either expected to follow instructions or allowed to do something he enjoys, such as listening to his MP3 player or watching videos.

Because of Alex’s language limitations, his parents, teachers and therapists wear color-coded laminated cards around their necks to indicate which set of rules are in effect: green for “Alex’s way,” red for “our way.” The ABA approach also uses tangible rewards to keep children motivated. Alex’s include MP3 time, Gummi bears and chocolate-covered pretzels.

His mother has to record virtually everything he does during the day in a binder that Gallagher and his therapists use to spot problems and track his progress.

“It’s difficult, still, because this is what I have to do every day of my life, but I definitely have more control over him,” said Mennicucci, 34, who no longer has to pad herself like a football player when she is around her son."

ABA has been confirmed repeatedly for decades as the most evidence based effective intervention for autism in studies and reviews by credible health and education organizations from the US Surgeon General to state agencies in New York, California and Maine to the American Academy of Pediatrics.  Still ABA is criticized by persons and organizations who are for the most part ill informed about ABA and often have an ideological or self interest reason motivating their criticisms.  The stories of people like Alex and his parents are important to show the real life help that ABA can provide to children with autism and other serious intellectual and behavioral disabilities.  

The New Brunswick Association for Community Living Centre of Excellence for Children and Youth with Complex Needs

I have participated in the current "consultation" process being conducted by Bernard Richard,  New Brunswick's highly, and justly,  respected Ombudsman and Youth Advocate purportedly aimed at developing recommendations for a centre of excellence for youth at risk and youth with complex needs. I was very upset to hear this good gentleman make remarks at the outset of his comments which appeared to rule out any type  of  recommendation of a   residential care facility for youths with complex needs. There was no recognition in his remarks of the reality faced by many youth and adults with severe developmental disorders and limitations who actually require residential care and treatment on a prolonged or permanent basis.   Unfortunately  Mr. Richard's remarks reflected the non evidence based  NBACL community inclusion philosophy whose adherents have steadfastly opposed evidence based treatment, education and residential care for children, youth and adults with autism disorders.

There was no recognition in Mr. Richard's remarks  of the need for permanent care facilities even though the evidence of such a need is living, and has been living for years, in hospital facilities of various types in Campbellton and  Saint John, New Brunswick. Some of this evidence, some of these people, including some with autism disorders, have even been exported out of the country to Bangor Maine.

Parents of such individuals do not WANT their youth and adult children to live in hospitals but there has been no decent, modernized, alternative residential care and treatment facility in New Brunswick. That brutal reality does not appear to be recognized in the current review by Mr. Richard who at a gathering last night, once again, repeated the cliches and feel good buzz words of the community living movement. 

The event last night was very much like a high school football rally with young people wearing DOTS T-shirts    playing music and encouraging those present to throw symbolic balls of rolled up paper into recycling boxes. Mr. Richard addressed the rally and talked about the bad old days of the Roberts facility, closed now for many years, which still dominates the thinking of those, including Mr. Richard, who subscribe to New Brunswick's failed community inclusion model. Mr. Richard, like NBACL President Clarence Box, who joined the discussion table to which I was assigned during the previous consultations, talked about moving past "bricks and mortar" concepts in his recommendations for a new Centre for Youths with Complex Needs.   

I don't know what kind of centre will be recommended that will not include bricks and mortars. The buildings in which Mr. Richard's office is located, the several buildings owned by the NBACL in NB are "bricks and mortar".  People need facilities to do many things ... to live, to work in their offices, to educate children...  to provide treatment ... and to provide a place in which to reside and receive treatment, in some cases permanently,  for some youth and adults with complex needs. The community inclusion model has prevented modernized habitable versions of such facilities from being developed in NB and it has simply ignored those who don't fit their belief based system and have had to be hospitalized or exported. 

It is the very feel good community living philosophy embraced by Mr. Richard which has caused the problem here in NB.  Mr. Richard spoke at the consultation meeting and again last night about how impressed he was with the "vision" of one of his expert advisers a gentleman from Ontario with no prior connection I am aware of to New Brunswick. What evidence the gentleman's vision is based on is beyond me to say. I suppose though  that visions, and philosophies,  do not require an evidence basis.

It is a problem Mr. Richard now appears poised to try and fix by applying more of the same failed philosophy that caused the problem in the first place.  I am sure Mr. Richard will recommend a visionary concept to serve NB's youth with complex needs. I am sure Mr. Richard, Mr. Clarence Box,  community living icon  Gordon Porter, and other subscribers to the community inclusion philosophy, will feel good about that vision.  I am happy for them. 

I am not at all sure though, with great respect, that Mr. Richard will recommend anything which really addresses some of the most important needs of youth with complex needs ... the need for decent, modernized and evidence based  residential care and treatment. 

Autism Rising: CDC Says Autism Increase is Real

One of the heated  debates, of the many, that arise in discussion of autism related matters is whether the rates of autism increase is real, in whole  or in part, or whether the rates are increasing solely because of 1994 diagnostic definition changes in the DSM and increased social awareness.  The  United States Center for Disease Control however, in arguing that thimerosal, the mercury contained in some vaccines, does not cause autism disorders, has taken the clear and unambiguous position that increasing numbers of autism diagnoses reflect a real increase in autism disorders:

"Does thimerosal cause autism?

Research does not show any link between thimerosal in vaccines and autism, a neurodevelopmental disorder. Although thimerosal was taken out of childhood vaccines in 2001, autism rates have gone up, which is the opposite of what would be expected if thimerosal caused autism."

Obviously if the increases in autism diagnoses did not reflect real increases in autism there would be no merit to the CDC position that increased autism rates confirm that thimerosal does not cause autism.   The increases in autism diagnoses are real, autism IS rising, the CDC says so.

Autistic Persons With Intellectual Disability Excluded From Yet Another Autism Spectrum Disorder Study

Researchers in the US and Canada are not waiting for revisions to the ICD and DSM to group the pervasive developmental disorders under the banner of the New Autism Spectrum Disorder. Nor are they waiting for formal diagnostic revisions to exclude the 75-80% of persons with the currently defined Autistic Disorder who are intellectually disabled from the New Autism Spectrum Disorder when conducting their research. 

Another fMRI study, this time from Yale,  Neural Signatures of Autism, uses only autistic subjects with average intelligence while purporting to have found results applicable to all persons with autism spectrum disorders:

"Autism spectrum disorder (ASD) is a strongly genetic, highly prevalent neurodevelopmental disorder characterized by striking social deficits (1, 2). Among the most scientifically challenging features of ASD are its phenotypic heterogeneity and genetic variability, which constrain successful identification of genes underlying the clinical syndrome. Despite these challenges, we hypothesize that the various factors contributing to the expression of ASD might exert their effects through a circumscribed set of neuroanatomical structures (3); that is, it is possible that the simplest and potentially most powerful signature of ASD will be found at the level of brain systems. Such “neural signatures” of ASD may serve as critical endophenotypes to facilitate the study of the pathophysiological mechanisms underlying this devastating and highly prevalent neurodevelopmental disorder."

The study authors' reference to the New Autism Spectrum Disorder as "devastating" and their stated intent to address the challenges presented by the heterogeneity of the disorder might lead one to think that some of the most devastated by ASD, those with currently defined Autistic Disorder and Intellectual Disability might be included as participants in the study.  Such was not the case, however, as participants were limited to those with average intelligence. Persons with Autistic Disorder and Intellectual Disability were intentionally excluded:

"As illustrated in Table 1, the three groups of participants were matched on chronological age and were of similar cognitive ability, all within the average range. Cognitive ability was assessed using either the Differential Ability Scale (DAS-II) (18) or the Wechsler Abbreviated Scale of Intelligence (WASI) (19)."

Undoubtedly there will be more and more studies of Autism Spectrum Disorders which will exclude subjects with autism and intellectual disability.  On a common sense basis I do not believe you can draw conclusions concerning this entire spectrum of disorders by excluding a major group, a group whose participants are severely affected.  If you don't study them you can't draw conclusions about them.

 Of course the professionals involved with the DSM and ICD revisions may have a smple solution - simply define the problem away.  By expanding autism in the DSM-IV to include those with Aspergers who are, by definition, not cognitively challenged, the APA reduced the numbers of those with autism and intellectual disability from the 75-80% range to approximately 40%. The DSM-5 may reduce the figure further by including sub-clinical, almost autistic groups, in the new Autism Spectrum Disorder and may simply define Autism Spectrum Disorder so as to exclude persons with autism and allegedly "co-morbid" conditions like Intellectual Disability.

In the meantime researchers like the Yale group are forging ahead studying the New ASD and drawing conclusions about the entire spectrum without studying those with ASD and Intellectual Disabilty:

In this study, we have characterized neural signatures of the state of having ASD, the underlying trait of vulnerability to develop ASD, and regions of compensatory activity that distinguish US from children with those with ASD and TD. Measurement of activity in the pSTS region allows us to subdivide the autism spectrum by severity. Our results identifying trait activity provide a possible neuroendophenotype ofASDand hold promise for future genetic research.

Saturday Morning Conor Fun

On Saturday mornings we usually walk to the SuperStore with Conor to pick up a few groceries. We get some exercise that way and we reduce our carbon footprint by leaving the car in the driveway. The best part though is having fun with Conor. Yesterday Conor did some running on the way to the store, first running away from Heather and then back towards her while she was taking some pictures. (My pontoon sneakers can be seen in the background in one pic).

At the Superstore Conor posed patiently with his new Toy Story 3 poster while Dad took a couple of pics. We drop by the Superstore bakery often. Conor likes the various movie decorations on the cakes. It really felt good when staff brought out a Toy Story 3 poster and gave it to Conor.

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?

Autism and the NBEN Collaborative on Children's Environmental Health

I attended the New Brunswick Environmental Network meeting of the NB Collaborative on Children's Environmental Health November 16, 17 in Fredericton although I had to leave a bit early on the second day.  It was an impressive gathering of government, business and non-profit organizations focused on environmental health issues generally.  The highlight of the gathering for me was the participation of guest speaker  Maryse Bouchard, who has studied, and provided evidence, of the negative neuro-psychological impact of manganese found in drinking water supplies on children and adolescents.  Professor  Bouchard is an Adjunct Professor, CINBIOSE, UQAM and Researcher, CHU Sainte-Justine. She was the lead researcher of the team that released a study which showed that children exposed to high concentrations of manganese in drinking water performed worse on tests of intellectual functioning than children with lower exposures.

Although I attended this excellent meeting with the intention of just listening I did in fact mention in response to a question concerning autism that autism research funding  has been almost exclusively directed toward genetic autism research but that the emerging view is that autism results from the interaction of genetic and environmental factors.  I did mention vaccines and autism solely to state that it is the view of some distinguished health authorities that the epidemiological studies are not conclusive on the vaccine autism issues. 

When each participant was asked about successes they had experienced in their efforts I mentioned the institution in New Brunswick, as a result of parent advocacy, of government funded preschool autism intervention by properly trained staff, autism specific training of Teacher Aides and Resource Teachers and the accommodation in neighborhood schools of individual autistic children based on their challenges and needs.  I mentioned that some autistic children prosper in New Brunswick mainstream classrooms but that some, including my son at our request, do much better in individualized learning environments in neighborhood schools.

It was, overall, a very good conference. If I could point to one area for improvement for an environmental collaborative focusing on environmental health of children  it would be to focus more attention on the prenatal environment of the child.  The months before  birth constitute one of the most crucial development periods for any child and it is a period of vulnerability to substances crossing the placenta, from any source, including vaccines, epidurals and ultrasounds. The connection of preterm births and cesarean section deliveries on autism rates should  be explored more fully.  The  expecting mother's  uterus is the most important environment for any child's  development and environmental autism research  must include that environment.

New Ontario Brain Institute to Include Autism Treatment & Cure Research by Dr. Peter Szatmari

Ontario Premier Dalton McGuinty has announced the creation of an Ontario Brain Institute which will include autism disorder expert Dr. Peter Szatmari and a focus on finding biomedical treatments and cures for autism disorders.  Dr. Szatmari informed the Hamilton Spectator:

“I think it’s pretty exciting,” Szatmari said Tuesday. “It reflects the importance of a knowledge economy and the importance of biomedical research, particularly in science-research in the quality of life for the people of Ontario. To have a government recognize the importance of the brain in people’s everyday lives is fabulous.

...

“Currently, we don’t have any biomedical treatments that can treat or even cure the disorder,” Szatmari said. “I’m hoping that with some of these genetic discoveries we can figure out what is going wrong in the brain so we can specifically target those pathways and cure the disorder.”

To even have an autism expert talking in a meaningful context is a huge step forward  in the battle to find cures for autism disorders.  Just recently the Mysterious "Dr. M" testified as an expert witness before a Canadian Human Rights Tribunal in one of Michelle Dawson's proceedings against Canada Post Corporation and informed the tribunal that the "notion" of curing autism is nonsense. To see real steps being taken toward finding treatements and cures for autism disorders, even to speak openly about the possibility of finding cures for autism disorders, is a long overdue but welcome development.

Adult Autism Reality: Where Do Severely Autistic Adults Live After Their Parents Die?

Where do severely autistic adults live after their parents die?

It is a question that gnaws at many parents with severely disabled children. At the same time  attempts to find answers to that question are often met with protest and even hostility by other parents who fear and loathe the very concept of institutional care.  That tension appears to be present in a Milton Georgia where city council zoning change to permit development of a facility to provide assisted living care for autistic adults faced what 11alive.com  described as "ardent" opposition:

"A city council meeting Monday night became the center of a hot-button debate about the treatment of those with autism.


The Milton City Council approved the rezoning of a chunk of Deerfield Parkway to become a transitional facility for adults with autism -- including a vocational school for students more than 18 years of age and an assisted living facility called Watercolors Transition with 72 studios.


But it didn't come without ardent opposition from advocates and parents in the autism community, who spoke out against the project.


"It is ripe for abuse and neglect," said Rita Young, Director of Public Policy and Education for AADD, "and for the behaviors to really escalate."


Several parents said they found the idea counter-productive, essentially encouraging those with autism to turn away from the rest of the society. One added, "I find it offensive."


But Rick Swanson, the architect of the facility that would be among the first of its kind nationally, says the research he's done -- including numerous interviews with those in the autism community -- has found massive support for the project, some of which came from supporters in Milton Monday evening."

I participated a couple of weeks ago in a public consultation process being held by the office of the Ombudsman/Youth Advocate here in New Brunswick.  The question of where my  severely autistic son will live when I can no longer care for him, and after I am dead, was on my mind while I  attended  as a parent of an autistic child who has been active in autism advocacy in New Brunswick for over a decade.  The consultation was intended to gather public input on a centre for youth with complex needs. When the current, and highly respected,  Ombudsman/Youth Advocate spoke he quickly informed those present that the recommendations made by his office would not include a recommendation for a  residential institution. OK fine but where do youth with complex needs live if not in an institution?

The fact is that, at least here in New Brunswick, some youth with complex needs can not because of their specific challenges live with family or in group homes where the expertise to provide proper residential care and assistance does not exist.

Group homes in New Brunswick often lack the trained staff and professional expertise to provide for the needs of young people with severe autism and other disabilities.  For several years we have wrung our hands in this province over the issues surrounding residential care for youths and adults with autism disorders. But we have not developed a viable set of alternatives for autistic youth and we have not responded at all with new adult autism  residential care and treatment facilities.

I have visited the institutional facilities at Centracare and Dalhousie Regional Psychiatric Hospital.  I do not want my son with severe Autistic Disorder to live in those institutions after I die or become incapable of caring for him.  But what alternative will he face, where will he live, when I am dead?  We currently have severely autistic adults, like my son, living in psychiatric hospitals in New Brunswick, or shipped out of the province, even out of the country, because we have no realistic living and care alternatives available for them.

Feel good buzz words and cliches like "inclusion|" and "community" will not provide the care my son and other severely autistic adults need in order to live a decent life after I am dead.  My son will require residential care in a facility which provides for his physical security and his ability to enjoy life; with staff that have appropriate autism intervention training and access to professional assistance. Outside of the psychiatric hospitals no such facilities exist here in New Brunswick.

Close the institutions?  Yes, absolutely.   But only after appropriate alternatives are available to provide for the residential care and treatment needs of youth and adults with severe Autistic Disorder and other serious disorders and disabilities.  Feel good buzz words do not provide those alternatives.

Irrational Neurodiversity Ideology Harms Children with Autism Disorders

The American Medical Association has a commentary titled  Can Parents of a Child with Autism Refuse Treatment for Him?  by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site,  in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier.  The doctor advised the parents of an opportunity for treatment  for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic.  Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether  child protection agencies should be contacted by a doctor confronted with such a situation:

"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed.

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care.

Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention.

Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency?

Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue.  A parent has no more right to refuse  available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders.

The parents in that clinical case commentary are responsible for what happens to their child and  they must  wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor.

Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and  the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism.  As applied to autism Neurodiversity is fundamentally irrational at its core.

Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis  called autism, embrace the  diagostic  label  "autism",  identify with "autism", and in the same breath    reject autism  as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with  mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental  disorder. 

When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair.   I was unsure whether to seek treatment for my son Conor or not.  I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie.  Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can".

I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation.   Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son.   She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment.
  
The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act.  Many will also be exposed to Neurodiversity ideology, not just through internet bloggers  but also through major media institutions that add a false air of legitimacy to this harmful ideology  pushed  by frequent big media interviews with very high functioning autistic persons who do not want to be cured.

Even the administration of US President Barack Obama has legitimized this harmful ideology by  promoting  a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured.  He promotes the idea that autism and Aspergers are social conditions not medical conditions.

Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. 

Autism disorders are exactly that medical disorders, mental disorders.  If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children.  If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children.

Do not subscribe to the Neurodiversity ideology.  Your child with an autism disorder will pay the price if you do.

CARD Study Is Latest Proving ABA Is the Gold Standard for Autism Treatment

Dr. Doreen Granpeesheh, executive director and founder of CARD, celebrates 

the study results  with Megan Howell, one of the participants who recovered

 from autism. (PRNewsFoto/Center for Autism and Related Disorders, Inc.)

Study results released by the Center for Autism and Related Disorders prove, once again, that ABA is the gold standard for autism treatment.   CARD, one of the best known, experienced and credible centers for autism intervention in the world states in its press release that the study:

"evaluated the effects of behavioral intervention for 14 young children with autism using a version of Applied Behavior Analysis (ABA) that blends structured teaching with play-based behavioral intervention. Today, 43 percent of the study's participants no longer display clinical symptoms of autism and most of the participants demonstrate significant improvements in functioning. 

In accordance with previous research, CARD found that many of the children made substantial gains in cognitive and adaptive functioning, as well as language skills. Most of the children also demonstrated significant improvements in executive functioning. After treatment, the average T-score for the group on the BRIEF, a measure of overall executive functioning, was 61, well below the cut-off for clinically significant impairment. In addition, 8 out of 14 children were functioning in the average range on the Vineland ABC, a measure of overall adaptive functioning, whereas only 2 of 14 were in the average range before treatment began.

CARD officials are not trying to overstate the results. They do not claim that the children are cured nor that they all can be said to be "indistinguishable from their peers":

Daniel Openden, the center's vice president and clinical services director, said the CARD results are the latest to prove ABA-based therapy is the gold standard for autism treatment. He sees autistic children make amazing progress, but he doesn't say they are cured or recovered.

"Recovery can mean different things to different people, so the key is to understand how recovery is defined," he said. "We see a range of outcomes in response to effective treatment, up to and including children who appear indistinguishable from their peers. But we're not comfortable saying that these children no longer have autism."

This study will have no persuasive effect on those who are ideologically opposed to ABA but for parents and others seeking help for their autistic children it is more evidence that they should give strong consideration to ABA as a treatment to help their children.

Autism in a Lab Dish? Call Me Unconvinced

The hot autism news of the day is that scientists have replicated autism spectrum disorder in a lab dish. A study published in Cell asserts that the authors have used stem cells to develpop  neurons.  I am not convinced. 

Maybe someday when we know what autism actually is we can replicate it but today when we can not yet agree on whether autism includes those with no obvious life functional limitations and when very serious challenges facing the 75-80% of persons with Autistic Disorder who also have significant intellectual disabilities are dismissed as resulting from co-morbidities I don't understand how anyone can claim to have replicated autism spectrum disorder in a petri dish.

Interestingly the Cell study Abstract indicates that Rett syndrom was used as an autism spectrum genetic model:

Autism spectrum disorders (ASD) are complex neurodevelopmental diseases in which different combinations of genetic mutations may contribute to the phenotype. Using Rett syndrome (RTT) as an ASD genetic model, we developed a culture system using induced pluripotent stem cells (iPSCs) from RTT patients' fibroblasts. RTT patients' iPSCs are able to undergo X-inactivation and generate functional neurons. Neurons derived from RTT-iPSCs had fewer synapses, reduced spine density, smaller soma size, altered calcium signaling and electrophysiological defects when compared to controls. Our data uncovered early alterations in developing human RTT neurons. Finally, we used RTT neurons to test the effects of drugs in rescuing synaptic defects. Our data provide evidence of an unexplored developmental window, before disease onset, in RTT syndrome where potential therapies could be successfully employed. Our model recapitulates early stages of a human neurodevelopmental disease and represents a promising cellular tool for drug screening, diagnosis and personalized treatment.

The DSM-5 working groups have recommended that Rett's Disorder not be included in the DSM-5. The rationale for excluding Rett's Disorder is based on it's very specific and known etiology and the brevity of the autism like symptoms of the condition:

Rett's Disorder patients often have autistic symptoms for only a brief period during early childhood, so inclusion in the autism spectrum is not appropriate for most individuals.

Like other disorders in the DSM, Autism Spectrum Disorder (ASD) is defined by specific sets of behaviors and not by etiology (at present) so inclusion of a specific etiologic entity, such as Rett's Disorder is inappropriate.

Given the DSM-5 position on excluding Rett's Disorder from the Autism Spectrum Disorder it is difficult for this humble dad to see how a genetic model based on Rett's can be said to result in a replication of ASD in a dish.

I absolutely support autism research,including stem cell research, but the claim itself blaring in news headlines that autism has been replicated in a petri dish is in need of a good scrubbing with some  soap and water.

Autistic Disorder Began Increasing Worldwide in 1988?

   

I have produced below the abstract for an article titled Timing of Increased Autistic Disorder Cumulative Incidence published online at Environmental Science and Technology. I added the bold emphasis to the statement that both genetic and environmental factors are implicated in its etiology. It is long past time that environmental autism, and autistic disorder,  research received more funding priority from public authorities which have favored genetic based autism research almost exclusively for decades with few significant results. Authors of the study are Michael E. McDonald and John F. Paul of the National Health and Environmental Effects Research Laboratory, U.S. Environmental Protection Agency, MD-B343-06, Research Triangle Park, North Carolina 2771.

It is interesting to note that cumulative increase was observed worldwide beginning in 1988 several years prior to the publication of the DSM-IV  in 1994 AND that the data relates to Autistic Disorder not the broader "autism spectrum" of disorders.

Environ. Sci. Technol., 2010, 44 (6), pp 2112–2118, DOI: 10.1021/es902057k, Publication Date (Web): February 16, 2010,Copyright © 2010 American Chemical Society

Autistic disorder (AD) is a severe neurodevelopmental disorder typically identified in early childhood. Both genetic and environmental factors are implicated in its etiology. The number of individuals identified as having autism has increased dramatically in recent years, but whether some proportion of this increase is real is unknown. If real, susceptible populations may have exposure to controllable exogenous stressors. Using literature AD data from long-term (10-year) studies, we determined cumulative incidence of AD for each cohort within each study. These data for each study were examined for a changepoint year in which the AD cumulative incidence first increased. We used data sets from Denmark, California, Japan, and a worldwide composite of studies. In the Danish, California, and worldwide data sets, we found that an increase in AD cumulative incidence began about 1988−1989. The Japanese study (1988−1996) had AD cumulative incidence increasing continuously, and no changepoint year could be calculated. Although the debate about the nature of increasing autism continues, the potential for this increase to be real and involve exogenous environmental stressors exists. The timing of an increase in autism incidence may help in screening for potential candidate environmental stressors.