Medicare for Autism Now: Shelley Davis Behavioural Consultant and Attorney

From the Medicare for Autism Now web site and the film Medicare's Orphans: A Film About the Fight to Get Healthcare for Children with Autism in Canada an interview with Shelley Davis:

Shelley Davis is a US based Behavioural Consultant who has consulted to BC families for the last 15 years. She is also a practicing attorney. She reviews two US laws – the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) and how determined parent advocacy attained both. She describes the stark contrast in approach and delivery of autism treatment between California and BC. In her experience the only reason for improvements in BC was the result of the work and advocacy done by the original FEAT of BC (Families for Early Autism Treatment) parents. However, in her view, we’re still at the very beginning of the process. We need to continue to work together and have high expectations because it so too easy for children with autism to be pushed aside.

DSM5 Autism's Targeted Exclusion Of Intellectually Disabled Is NOT Based on Research Evidence

Dr. Catherine Lord has attempted to sell her DSM5 New Autism Spectrum Disorder in a comment at the Huffington Post by telling the ignorant, unwashed public that we have nothing to fear from the DSM5 Autism changes. Dr. Lord is trying to paint those who disagree with the DSM5 Autism Do-Over as irrational  thereby deflecting legitimate criticism which she and her DSM5 colleagues have not been able to credibly answer.  My criticism of the new DSM5 is two fold. 1. It expressly targets for exclusion the intellectually disabled who are also autistic and 2. It oversimplifies a complex disorder.  

I have commented for the past 2 1/2 years on the DSM5's  targeted exclusion of the intellectually disabled. The new definition excludes persons with profound intellectual disability from an autism diagnosis even if they display ALL of the diagnostic criteria.  This exclusion is derived from the convenience of researchers and clinicians who find the challenge of working with severely autistic, profoundly intellectually disabled persons too overwhelming.   Dr. Lord herself pointed out the tendency of autism researchers to exclude those with multiple disabilities and moderate and severe intellectual disability in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Parents of children with severe autism and intellectual disabilities can not simply abandon our children. Unlike parents, autism researchers and DSM5 autism committee members do not have to find ways to work with the most challenged autism cases.  They simply exclude them by redefining them out of the spectrum.  They do so by ignoring the evidence of those diagnosed with autism and ID by existing criteria.

The express exclusion, "not accounted for by general developmental delays"  occurs in the introductory paragraph to mandatory criterion A of the DSM5 ASD definition:

"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:"

Lynn Waterhouse in her newly released book "Rethinking Autism" Variation and Complexity, pages 382-385, references this express exclusion and argues that the exclusion of those with intellectual disability is NOT evidence based.  She points out that the exclusion is based on a faulty, non evidence based assumption that a  person's intellectual or cognitive disability causes the social communication deficits. Waterhouse argues that the exclusion of the intellectually disabled IGNORES evidence of published, credible,  studies indicating that 55-70% of those diagnosed with autism by prior criteria experienced intellectual disability based developmental delays.  The exclusion also ignores  genetic, chromosomal and neuroscience studies showing substantial overlap between cognitive disability and social communication deficits. 

Dr. Lord confessed in the NYT Amy Harmon interview that the DSM5 team targeted intellectually disabled for exclusion from the new Autism Spectrum Disorder.  That targeted exclusion of the intellectually disabled is not evidence based. It is not helpful to understanding autism disorders generally and will cause harm to the most severely affected by autism, the ones who are, apparently, too much of a challenge for Lord and the DSM5 Autism Do-Over team. The exclusion of the intellectually disabled from the new autism disorder, while not evidence based, serves the interests of researchers, clinicians and services providers who lack the good conscience and the intestinal fortitude to work with the most severely affected by autism disorders: those with  general developmental delays, those with intellectual disability.

I don't know if the DSM5 Autism team has a motto. An accurate, honest one might be:

"DSM5, simplifying autism complexity by ignoring the evidence; helping those with autism disorders, except those who are too challenging and inconvenient."

Is All Genetic Autism Research Fundamentally Flawed?

The assumption in traditional genetic expression analysis that mRNA content is similar between cells (represented by orange and black dots) does not affect the final results when the cells in fact do have equivalent mRNA content, as in Figure A. In Figure B, the cell represented by the orange dots has a significantly higher mRNA content, but when the data is normalized with the assumption that their contents are equal, the perceived response is skewed and inaccurately indicates that some of the genes are repressed (green bars). Using a standardized control, as in Figure C, eliminates the assumptions about mRNA content and presents accurate results.

Whitehead Scientists Identify Major Flaw in Standard Approach To Global Gene Expression Analysis, Nicole Giese Rura, October 25, 2012 

Autism research has been dominated for many years by the "it's gotta be genetic" mindset that has seen autism research dollars flow overwhelming toward genetic research at the expense of substantial research of environmental factors.  This dominance has been maintained despite the failure of the autism research community to find specific genes which could be said to cause autism disorders.  Much of the recent discussion has focused on gene expression.  Now a team of researchers led by Richard Young of the Whitehead Institute has identified a major flaw in traditional genetic expression analysis.  Will this flawed analysis undermine existing autism gene expression research?

The Whitehead article by Nicole Giese Rura indicates that the flaw is serious, even shocking,  that it affects a wide range of current biological research and that it may render previous research based on the flawed assumption questionable:

“The different results we saw from different methods of gene expression analysis were shocking, and led us to reinvestigate the whole process on several platforms,” says Jakob Lovén, postdoctoral reseacher in Young’s lab and co-author of the Cell paper. “We then realized that the common assumption that cells contain similar levels of mRNA is badly flawed and can lead to serious misinterpretations, particularly with cancer cells that can have very different amounts of RNA.” 

 In addition to delineating this problem, the Whitehead scientists also describe a remedy. By using synthetically produced mRNAs, called RNA spike-ins, as standardized controls, researchers can compare experimental data and eliminate assumptions about total cell RNA amounts. The remedy applies to all three gene expression analysis platforms they studied. 

Although the researchers believe the use of RNA spike-ins should become the new standard for global gene expression analyses, questions are likely to persist about the interpretations of much prior research. 

“There are over 750,000 expression datasets in public databases, and because they generally lack information about the cell numbers used in the analysis, it is unclear whether they can be re-examined in order to validate the original interpretation” says David Orlando, a scientist in the Young lab. “It may be necessary to reinvestigate some important concepts.”

Hopefully credible professionals involved in autism research will address this development promptly, indicating whether they agree with the Young Lab study, to what extent genetic autism research is affected and whether it will be necessary to reinvestigate conclusions reached by prior genetic autism research.  

Questioning Answers - An Excellent Autism Research Blog

My favorite blog dedicated to autism research is Questioning Answers, by researcher Paul Whiteley,  and I  recommend it for anyone interested in the subject.   Whiteley  presents autism research information in a manner that can be digested by this humble autism dad and is not condescending.  The content is broad, balanced and clear in its coverage of autism research subjects.  Whiteley displays no obvious bias,  (not obvious to me anyway),  in his comments which are always informative.  The QA blog regularly focuses on subjects that will be of interest to parents such as yesterday's Antipsychotics, autism and core symptoms. 

Whiteley describes his blog and his interest in autism and other research on his blog site profile:

"I have been involved in autism research for more years than I care to remember. The Questioning Answers blog is a place to describe and discuss various research into autism spectrum and related conditions. My Gutness Gracious Me blog is for discussions on various gastrointestinal research. I make no recommendations, I am not giving any medical advice, I am not formulating any specific opinions and do not want to get into any ethical, political or religious debates. I am not trying to change anyone's opinions, views, beliefs or anything else. These are purely blogs about science and research in autism and a few other interesting things. Any posts I make are my own opinions and not reflective of any organisation I am affiliated to. Keep in mind that science deals with probabilities not absolutes."

I follow Questioning Answers, read it regularly, and follow Whiteley's Twitter updates @QuestAnswers as well.  In my opinion Whiteley's blog profile self description is accurate and honest.  On Blogger and on Twitter Questioning Answers is a valuable  resource and I highly recommend it for anyone interested in autism disorder research.

Autism Stem Cell Treatment Research: Who is the Real Quack? Gorski (ORAC) or the FDA?

Real Quackery: Duck Flapping and Splashing  

Photos by HLDoherty 

In any commentary in which I dare question the self appointed protector of all things scientific, the ORACle known as Dr. David H. Gorski,  I have to begin with the statement that I recognize the public health importance of vaccines and that both of my sons, and I for that matter, have received all vaccines recommended by our local public health authorities in New Brunswick.  This statement is necessary because Dr. Gorski almost invariably alleges that anyone who questions the wisdom he brings down from the mountain top for us, the ignorant unwashed, is really just a closet anti-vaxxer.  I don't think vaccines are perfect though and it is my understanding that neurological damage has been caused by some vaccines in some individuals. I am aware also that Dr. Bernadine Healey had recommended further study of possible vaccine autism connections before her death ... and that some had vilified her for doing so.

Yesterday I commented on the fact that the FDA had approved a study to determine whether umbilical cord blood derived stem cells might be effective tools in treating autism. The article I quoted from contains some professional quotes indicating that the study is well designed and also contained a number of quotes expressly indicating that it is a very PRELIMINARY study.  I was happy to see research aimed at establishing or assessing possible treatments for autism disorders.  I was also happy that the study was, as reported in the article, approved by the US FDA.  To my thinking, as a humble autism dad,  FDA approval confirmed that the study would be conducted by appropriate guidelines, professionally and ethically. My commentary attracted a comment from MJ, author of the Autism Jabberwocky blog:

"Did you notice that the self-appointed high priest of science wrote (at least) two pieces on stem cells and autism? In the first he calls it quackery because it isn't evidence based and in the second says that studying the issue at all is unethical. He really seems to want to have it both ways. No treatments without proper research, which is reasonable, but no research because there is no evidence that it would work...."

I think MJ has made an excellent point.  How are we supposed to determine what is evidence based, effective treatment for autism or any other disorder, if no research is done to determine effectiveness?

Gorski`s objection to the ethics of a preliminary study of stem cells in treating autism disorders is set out in Is a trial of stem cell therapy in autism scientifically and ethically justified? :

``Think of it this way: Do you think that the evidence implicating a hyperactive immune system is strong enough to justify treating autistic children with prednisone? Cyclosporine? Other immunosuppressive drugs? If not, then why would anyone advocate using autologous stem cells, which appear to be immunosuppressive? Why on earth would an institute like the Sutter Neuroscience Institute carry out such a trial based on low prior probability? What sort of preclinical evidence did they have to justify this trial? The scientists in the article who say that the likelihood of a positive result from this trial is low are, if anything, too optimistic. The likelihood of a positive result is almost homeopathically low. When it comes to clinical equipoise, this trial looks to me as though it’s all risk with too little prospect of benefit to be justifiable without a lot more clinical evidence.``

While he is notorious for splashing for attention by flapping his wings and quacking out cheap insults at those who disagree with him, I have no doubt that surgical oncologist Dr. David H. Gorski (ORAC) is much better placed than I am to assess the ethical basis for conducting this preliminary study.   He questions the internal review board (IRB), apparently unknown to him at the time, in  a reasonably courteous, serious  manner.  What is not really clear from Gorski's comments is whether he would ever view any autism treatment study as justifying  supervision by an IRB or approval by the FDA.  In the comment linked above he did state with reference to pharmaceutical companies seeking drug approval:

"Similarly, any private entity (such as a pharmaceutical company) seeking FDA approval for its drug or device have to register with the FDA and abide by the Common Rule, whose most important set of rules mandate IRB approval and monitoring of the research. Some states also mandate that all human subjects research carried out within their borders, regardless of funding source, must abide by the Common Rule."

Since there is an IRB in place for this preliminary study, and since the FDA has given its approval for it to proceed, I assume Dr. Gorski (ORAC) will, if he has not already done so, acknowledge that this study is being conducted in accordance with recognized public health authority backing. As a mere layperson I assume that the US FDA has conducted the usual inquiries and that they are best placed, even better placed than surgical oncologist and autism expert Dr. Gorski, to determine the ethical appropriateness of the study. 

I assume that Dr. Gorski who feels FDA approval is a comforting requirement for  approval of new pharmaceutical company drugs or devices is also comforted by the FDA approval of the stem cell preliminary study. Surely he does not now consider the FDA to be governed by the quacks he so detests?

Regardless, if Gorski, the FDA or any other health professional or authority is simply going to ridicule and dismiss attempts to conduct any research into possible autism treatments and cures they will simply lose credibility with many autism parents when they try to convince them that they should stick with evidence based treatments for their autistic children.  That is not quackery. That is reality.

FDA Approved Stem Cell Autism Treatment Preliminary Study

I was surprised to see that a preliminary study of stem cell treatment of autism disorders is proceeding with FDA approval in the United States.  Stem Cells as possible treatments for autism have been mentioned for some time but have been subjected to disparaging commentary for several reasons including the usual anti cure attacks from Neurodiversity self interest groups. To see a preliminary study actually examining a possible source of treatment and cure for autism disorders is startling.  To see such a preliminary study receive FDA approval and thereby receive some protection from the anti cure autism extremists and self anointed protectors of the one true science at Respectful Insolence and similar sites is almost shocking.

Philly.com carries a HealthDay article by Mary Brophy Marcus, Could Stem Cells Treat Autism? Newly Approved Study May Tell  which indicates that: 

"Thirty children with the disorder, aged 2 to 7, will receive injections of their own stem cells from umbilical cord blood banked by their parents after their births. All of the cord blood comes from the Cord Blood Registry, the world's largest stem cell bank. Scientists at Sutter Neuroscience Institute, in Sacramento, Calif., said the placebo-controlled study will evaluate whether the stem cell therapy helps improve language and behavior in the youngsters."

The article  is careful not to over hype the study emphasizing that although it is a well designed study it is still a preliminary study which will in effect help decide whether further such studies concerning stem cell treatment of autism are warranted and that it is very early in this process.  The article also points out that there are mixed views  with some researchers being skeptical about the value of stem cells in treating autism. 

The cautions expressed are  helpful to my mind.  Those who oppose research that might lead to knowledge of autism causation, or to treatments and cures will seize on any excuse to attack and derail such research.  The disciplined, professional approach will help ward off such attacks.  In the end we should ALL want proper procedures, proper protocols to be followed to ensure that ANY results, positive, negative or neutral to anyone's perspective can be relied upon.

Personally, I am very happy that there is actual  research being done, in proper fashion, by credible professionals, under appropriate authorization aimed at finding treatments and cures for autism disorders. After years of  pointless, meandering,  autism research it is encouraging to see researchers who still live in the real world, who do not view parents as the enemy, and who realize that despite the protests of a few very high functioning persons  autism disorders are very debilitating, limiting and even dangerous for many who suffer from them.  Autism disorders require treatment as advocated by parents seeking treatment and cure for their children and for those who suffer from them and want treatment and cure for themselves.  Let the research be done and be done properly. 

Bribery! First Shave & Haircut for Conor THEN Back to So Called "Segregated" School

Conor Shows Off His New Shave and Haircut

Nothing wrong with bribery if it helps us get Conor to sit still for a shave and haircut! 

That's what happened this long weekend when I bribed Conor to accept a shave and haircut by indicating first shave and haircut then back to school, the school he loves so much. A school where he receives what the extreme, everybody in the mainstream classroom, ill informed inclusion ideologues deride as a segregated school. Conor accepted the shave and haircut. I handled the shave. Mom handled the haircut.

Conor loves his so called "segregated" school experience.  Every day, as I have pictured on this blog many times, Conor packs his back pack and lunch for school and parks them in front of the door  to get ready for school the next day.  

At school Conor starts his day in a Resource Centre with other students with challenges.  It is a wonderful environment for him to start the day, for breaks and for certain types of life skills activities.   There are adults with experience and skills for handling the unexpected challenges supervising and managing the Resource Centre.  It is a warm and welcoming environment and ensures security for students like our Conor.  Conor receives his primary ABA based instruction in a cubicle adjacent to other students also receiving such instruction.  His aide, who provides the instruction, was trained at the excellent UNB-CEL Autism Intervention Training program and his ABA based instruction is a critically important part of Conor's school day.

Conor does NOT like shaves and haircuts.  Sensory issues are long recognized by health authorities like the American Psychiatric Association as a condition that accompanies autism.  Challenges with sensory issues will now be expressly included as a diagnostic criterion, although not a mandatory criterion, in the DSM5's new Autism Spectrum Disorder.  Challenges with sensory issues, including flashing lights and loud sounds,  are recognized by major theatre chains that put on special autism friendly showings of some movies to accommodate those sensory challenges. Challenges with sensory issues are why we removed Conor from the mainstream classroom where he came home every day with self inflicted bite marks on his hands and wrists.  Challenges with sensory issues are why Conor receives his instruction in a quiet area outside the mainstream classroom.  

Conor loves his so called "segregated" schooling.  Conor's experience, the DSM autism criteria, the successful accommodation of his specific autism challenges, the accommodation of other autistic children by theatre chains will have no impact on the rigid, locked mindset of New Brunswick's extreme inclusion ideologues but it is reality.  If only the extreme inclusion ideologues were still capable of looking at the evidence and understanding that  alternative environments like Conor's Leo Hayes High School resource centre, and his individualized ABA instruction area are in fact an accommodation of his autism spectrum disorder challenges.

I have referred to authorities like the American Psychiatric Association.  The APA recognizes in its new Autism Spectrum Disorder diagnostic criteria (B.4.) that some, but not all, children with autism will have sensory challenges.  So too the Autism Society New Brunswick, during the MacKay Inclusion review informed Professor Wayne MacKay of its position that some autistic students can learn in the mainstream classroom and some can not. It is necessary to look at the evidence in each case and provide the appropriate learning environment based on that evidence. 

In Conor's case no one knows the evidence better than his Mom and Dad. If Education and Early Development Minister Jody Carr or Extreme Inclusion Icon Gordon Porter think differently then I ask them whether they think they could safely provide Conor with a shave and haircut?  I don't think they would try ... and in all fairness ... I wouldn't let them. 

ASfAR Early Autism Intervention Review: ABA Only Autism Intervention to Receive Highest Rating of E: Established Based on Evidence

The Australasian Society for Autism Research has just released "A Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders" which assesses the research evidence in support of the various early autism interventions and rates the interventions according to the level of evidence base in support of each intervention.  As with every other major research review of the effectiveness of early autism interventions only ABA, applied behavior analysis, received the highest rating:

All credible reviews of autism interventions from the US Surgeon General to the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders (2007, confirmed 2010) have rated ABA highest of all early interventions for autism disorders. Only ABA has consistently, as in this Australiasian review, been placed in the highest category in this case described as "Established based on Evidence".  This review, like all other reviews of the research literature before it, is unlikely to change the minds of the anti-ABA ideologues but it is important as one more tool to support political and legal advocacy aimed at providing education and health benefits for autistic children and adults.  Thank you to Dr. Jon Brock a member of the ASfAR executive committee for highlighting this new research report via Twitter. 

Neurodiversity Author and Ideologue Steve Silberman ALMOST Acknowledges Low Functioning vs High Functioning Autism Reality

Neurodiversity autism author and ideologue Steve Silberman ALMOST acknowledged the common sense reality of differences in autism function levels but at the last minute he turned and walked away once again. In an article at Scientific American  titled Contributors Lee Billings and Steve Silberman talk autism, space travel, and extraterrestrial life (Part 1)  Silberman talks briefly about the realities of low functioning autism and how the challenges they present COULD lead one to conclude that there really are differences in functioning levels. Then he abruptly struts away and denies those same differences. He, once again, takes the decidedly Non-Scientific American  ideological perspective that parents and clinicians who recognize differences in functioning levels are simply wrong and that the high functioning autistic persons he knows and adores  who claim that HFA and LFA are meaningless labels are right:

Lee: Is there any emerging consensus about the wide variations in the severity of autism?

Steve: I would say that one emerging consensus is that the idea that there is a single, unified condition called “autism” is little more than a useful fiction. This fiction allows us to address certain similarities across a very broad and diverse spectrum of conditions, and enables government agencies and insurance companies to offer services based on a single box labeled “autism” that can be ticked on a form. But that monolithic notion doesn’t reflect the actual reality, which is much more complex. What we call autism is probably a cluster of many different conditions, rooted in a wide variety of genetic predispositions and epigenetic triggers, which exhibit themselves in many different ways, including variations in severity.  The truth is that there are many “autisms,” rather than one “autism.”

Lee: Could you talk more about the problematic distinctions between “low-functioning” versus “high-functioning” people with autism? What alternative is there to this classification structure?

Steve: Obviously, the language of “high-functioning” versus “low-functioning” is very tempting to use, and most people—that is, parents and clinicians—use it. If you have a kid who can’t talk or use the toilet, rarely seems to connect with the people around her, appears to be profoundly intellectually disabled, and bangs her head against the wall, it seems appropriate to classify her as “low-functioning.” On the other hand, if you have a guy with an Asperger diagnosis who has a job writing code or fixing luxury cars and has a wife and kids of his own—it seems easy to call him “high-functioning.” But the autistic adults I know hardly ever use those two terms, because they know better. Even people who are classified as high-functioning—like John Elder Robison and Temple Grandin—really struggle with some aspects of life that most neurotypical people don’t have to struggle with.  At the same time, some research into “low functioning” individuals in recent years indicates that they may have much more going on inside them than is usually visible from the outside. That’s one reason why the development of alternate forms of communication for people who have difficulty with spoken language—and we’re talking about iPads here, an “assistive technology” that many neurotypicals find indispensable these days—is so important. I’ve interviewed some autistic people who would be written off as “low-functioning” by most people, but once they get an iPad with text-to-speech apps in their hands, they become as eloquent as poets.

Personally, I avoid using the terms “high-functioning” and “low-functioning” because I think they’re both misleading. The term “high-functioning” makes certain kinds of challenges invisible, while the term “low-functioning” makes certain kinds of intelligence and capability harder to see. Many “low-functioning” kids will eventually learn self-care skills and be able to communicate with some form of assistive technology. Once they can make their thoughts visible to others, you find out that they have very rich inner lives, and were always listening to what was being said around them. We need to find out what has worked in the lives of people like Robison, Grandin, and Stephen Shore—a guy who was considered low-functioning when he was young, and whose parents were told to put him in an institution. He’s now a professor at Adelphi University, and a delightful person. Once we find out what has worked for them, we can apply those lessons to the next generation of autistic people. That’s why Jenny McCarthy’s claim that “there were no autistic adults, it’s all now” is not just wacky and incorrect, it’s dangerous, because it deprives the huge population of autistic kids of visible mentors and role models whom they can learn from."

Silberman's claim is that because some persons once considered low functioning went on to communicate and excel in life it is therefore wrong to distinguish between low and high functioning autism disorders. This claim is absurd and lacking in common sense. As he has stated some persons with LFA have difficulty with the most basic functions in daily life like toilet training. Some engage in serious self injurious behavior. He could also have mentioned the autistic adults who live their lives not with assistive technology but in assisted living in varying levels of residential care including full time 24-7 institutional care. The realities of life for these people by any common sense measure are fairly described as low functioning compared to the very high functioning Friends of Silberman club ...  the Robisons, Grandins and Shores. 

Steve Silberman either lacks common sense and can not distinguish between these different functioning levels or he has simply chosen to turn and walk away from that truth in the interest of promoting his career and books as a leading author of the irrational ideology known as Neurodiversity. His public denials of the challenges, the more severe challenges facing low functioning autistic persons puts  him in the group of people who are obscuring public discussions about the natue of autism disorders and the needs of those who suffer from low functioning autism. 

I have visited Low Functioning severely autistic adults living in psychiatric hospitals. I have talked by phone with Michelle Dawson and I have met John Robison at the recent IMFAR conference in Toronto.  I have met very capable persons with High Functioning Autism and Aspergers here in New Brunswick.  These people are much higher functioning in their abilities to function in the real world than those living in residential and institutional care and Steve Silberman should know that. 

Shame on you Silberman.

More Confirmation of Targeted Exclusion of Intellectually Disabled from DSM5 Autism Spectrum Disorder: But NO ONE CARES

Emily Singer has published an article at SFARI, Proposed guidelines won't miss autism cases, study says, which appears to suggest that persons who would meet DSM-IV PDD-NOS and Asperger's will "only" be reduced by approximately 10% under DSM5 criteria. The focus, as always, is on the HF end of the spectrum with no mention made of the intellectually disabled who will be excluded under the wording of mandatory criterion A of the DSM5. "We didn't see any evidence that there would be dramatically lower diagnosis of people with Asperger's or PDD-NOS," says Lord."

Catherine Lord has previously confessed that the real targets for exclusion from the DSM5's New Autism Spectrum Disorder are 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 reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

Persons with ID represented "the vast majority" of persons with autistic disorder according to CDC autism expert Dr. Yeargin-Allsopp. The DSM-IV addition of PDD-NOS and Aspergers reduced that figure to 41-44% according to recent CDC surveys.  The DSM5 exclusion under Criteria A for social communication even where  EVEN if all Critera A categories are otherwise exhibited will result in a further significant reduction in numbers of person with autism and ID. And that is the real aim of the DSM5 as Catherine Lord again confesses as reported in the Singer/SFARI article:

"Lord and her colleagues found that the DSM-5 is as sensitive as the DSM-IV, meaning it accurately identifies those who have autism. The DSM-5 criteria also have better specificity than those in the DSM-IV, meaning they can better distinguish between people who have autism and those who have other developmental disorders, the study found."

As set out above the real targets for exclusion from the autism spectrum under the DSM5 autism do-over are the intellectually disabled who are targeted by the addition of the "not accounted for by general developmental delay" disqualifying criterion in mandatory criterion A. Studies by J Matson have confirmed that substantial numbers, as many as 35.5%, of intellectually disabled who would meet DSM-IV autism criteria, will be excluded under the DSM5 criteria. 

In the DSM5 the evolution of autism into Aspergers continues with the targeting for exclusion of the intellectually disabled. But no one cares. Not Dr. Lord,  not Dr. Geraldine Dawson of Autism Speaks whose organisation has expressed concern over the possible impact of the DSM autism do-over on those at the HF end of the spectrum but not on the intellectually disabled. Not the New York Times and other major media who have worried over the possible HF exclusions.   The exclusion of some HF is possible, the exclusion of many LF intellectually disabled is certain but apparently no one cares about the intellectually disabled and the impact this exclusion will have on them.

Michigan Daily Promotes Harmful, Irrational ASAN Anti-Cure Ideology

In Autism as an identity, not a disease Michigan Daily editor Jennifer Xu  pushes the harmful Neurodiversity ideology that autism is not a disease or a disorder but an identity that should be embraced and promoted.  This self promoting ideology in fact is used to interfere with and obstruct efforts by parents seeking treatment and cure for their child's autism disorders.  Ms Xu and the Michigan Daily have, with this lengthy, one sided, article misrepresented autism disorders, particularly severe autistic disorders and the impairment they inflict on the children and adults who suffer from them.

"Autism as an identity, not a disease" features very high functioning university English professor Melanie Yergeau who serves on the board of directors of the Autistic Self-Advocacy Network, an organization composed of very high people on the autistic spectrum who promote Neurodiversity perspectives which present autism as a variation not a disorder. Ms Xu does not meaningfully present the other side of the argument by referring to the great number of persons with autism disorders, most diagnosed as children (unlike either Ms Yergeau or her founding ASAN member Ari Ne'eman whose "autism" symptoms were so mild as to escape attention until their college or adult years) for whom the challenges of autism disorders are much more serious than those faced by Ms Yergeau. 

Many children, like my son diagnosed 14 years ago at age 2, were diagnosed early because their symptoms were severe and obvious. Unlike Ms Yergeau or Mr. Ne'eman autism is very serious for most of these children and will include cognitive challenges, limited communication verbal or otherwise, self injurious behaviors and lives spent in residential care of one level or another. For Ms. Yergeau, Mr. Ne'eman and their fellow ASAN Board of Director members autism may be just an identity to be embraced. If it is not actually a disorder for them, if it does not actually limit their daily functioning or prevent them from becoming professors, corporate directors, media celebrities or otherwise impair their lives why then did they accept a medical disorder diagnosis of autism or Asperger's in the first place. 

Parents fighting to help their severely autistic children face many obstacles. One of the most obnoxious of such obstacles is the harmful ideology of ASAN Directors and other very high functioning autistic persons who feel the need to own the medical label which they embrace while telling the world it is not in fact a medical disorder. Not content to seek awareness of their specific high functioning autism realities they pretend to speak on behalf of others, including other peoples children, who are much more severely affected than they. They make public efforts to interfere with the efforts of parents seeking cure and treatment for their own severely autistic children. 

The Michigan Daily's benevolent portrayal of this harmful Neurodiversity ideology is shameful, irresponsible journalism.

A Real Canadian Autism Hero - Stefan Marinoiu

Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

Dear Honourable Ministers: Conor Has Voted Again for Flexible, Meaningful Inclusion, Alternative Learning Arrangements

Conor, anxious to get to Leo Hayes High School, to the resource center with other challenged kids for socialization, and to his individual learning area for his ABA based instruction, watches the clock this morning. Conor votes YES for flexible inclusion with meaningful access to learning.

Minutes before departure Conor, on his own initiative, brings Dad his sneakers to make sure I don't forget to drive him to school on time. 

Honourable Jody Carr Minister of Education and Early Childhood Development
Honourable Dorothy Shephard Minister of Healthy and Inclusive Communities

Dear Honourable Ministers:

I am forwarding the above composite picture of my son Conor, seated in the kitchen watching the clock at 7:30 am this morning.  Conor, now 16 years old, has severe Autistic Disorder and is assessed with profound developmental delays.  He was not placed on a "time out" chair for having behaved badly.  He was sitting there of his own choice because he was, as he is every day, anxious to get to school at Leo Hayes High School, an experience he truly loves and one which he misses during the summer months.  

I encouraged Conor to engage in other activities instead of just sitting on the chair and he did so. At precisely 7:55 though Conor, again on his own initiative, brought me a pair of my sneakers and handed them to me,  as a polite reminder to Dad to get ready to take him to school. To the far left of the picture is a red object. It is his school back pack including his lunch pack which he packs the night before and placed in the fridge.  In the morning, on his own initiative, he places the lunch pack inside the back pack and places them near the exit door to ensure that it is with him when Dad drives him to school in the morning.  

With these actions Conor indicates clearly what a positive experience his flexible inclusive education at Leo Hayes HS is for him.  Conor does not, at our request receive his instruction in a regular classroom. Some autistic children can prosper in a regular classroom and some, like Conor, require instruction outside the regular classroom in a quieter space where he is not overwhelmed by noise and other distractions. 

Conor started his schooling in a regular classroom and came home every day with self inflicted bite marks  on his hands and wrists. (self injurious behavior is a recognized condition commonly associated with autism disorders). Once removed the biting ceased and Conor received his instruction in an individualized area in grade school, middle school and high school.  His instruction has been provided by education assistants/teacher aides trained at the excellent UNB-CEL Autism Intervention Training program.  

Conor's socialization has NOT been impaired by these arrangements.  Throughout school he has, in consultation with us, his parents, been involved in various outings and activities within his abilities including some specified gym activities, swimming (his favorite), outings like apple picking (another favorite) and last year he even attended a play put on at Fredericton's playhouse. Other students have ALWAYS greeted Conor warmly at every level of school. Some have even sought him out at our home in order to say hello to him outside of school. At Tim Horton restaurants Conor has been greeted by staff who are were students at school and knew him through Best Buddies. I underline these facts because it is important to realize that full regular mainstream inclusion is NOT necessary to ensure a full social learning experience for children with severe challenges like my son.  

One of the greatest socialization assets for Conor has been the Resource Center at the Leo Hayes High School. The RC is well staffed with trained experienced personnel that know how to manage children with extra needs in as stress free a manner as possible.  It also provides a variety of tools and sharing of information directly by people who are actually working directly with challenged children.  Stigmatization does not occur by placing challenged children in a resource center for parts of the day.  Stigmatization and outright harm occurs by pretending that all children regardless of cognitive level and regardless of disability based sensory and behavioral challenges,  must receive instruction in the same area as their chronological "peers". 

I have made these statements again on Conor's behalf, as I have made them throughout his education because of the constant threat posed to the flexible mode of inclusion that has benefited him in his education. The ideologically based every child in the regular classroom model to which this current administration and its most trusted advisers subscribe would be detrimental and harmful to my son if inflicted upon him, if his ABA based learning in an alternative area or if his socialization, security and happiness in the Leo Hayes High School are targeted for elimination.

Conor demonstrates the success of the current flexible model of inclusion, of the ABA instruction he has received outside the regular classroom, of the security and opportunity for socialization that the Leo Hayes High School Resource Center provides.  Please do not ignore Conor's story while making decisions affecting his future and the future of other children who need accommodation outside the regular classroom.

Although I am a lawyer by profession I try to avoid making legal arguments in education discussion since they can unfortunately lead to confrontation when cooperation and understanding are so badly needed to ensure proper education and development of children.  Having said that I will provide you, with respect, to two links to documents summarizing leading precedents in Canadian jurisdiction concerning the need meaningful access to education of children with disabilities written by Yude Henteleff QC a distinguished lawyer and Order of Canada member who has represented many disability organizations in Canada. Without getting too detailed I believe these documents can be summarized by saying that case law has established that an ideological insistence on regular classroom placement of all children regardless of disability considerations, and without providing alternative arrangements to accommodate their disability based challenges can constitute unlawful discrimination:

1. The Fully Inclusive Classroom Is Only One of the Right Ways to Meet the Best Interests of the Special Needs Child.  (2004) Yude M. Henteleff 

2. MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION by Yude M. Henteleff C.M., Q.C., LL.D. (Hon.) (2012)

I would ask you foremost though to simply look at these pictures of Conor and take my word as his parent, as a long time autism advocate and representative of the Autism Society New Brunswick during the MacKay and Ministerial Committee inclusive education reviews (and current acting ASNB President). Not all children, and certainly not ALL autistic children function well in the regular classroom.   The ASNB position that children should be educated in a manner consistent with an evidence based determination of their best interests is consisted with the policies of the Canadian Learning Disabilities Association. It is also consistent with the first section of the PNB definition of Inclusive Education that resulted from the Ministerial Committee review of inclusive education:

"Inclusive Education

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and  founded on evidence." (underlining added - HLD)

I ask both of you Honourable Ministers to be faithful to the above definition of inclusive education fashioned after years of consultation conducted by Ministers of the Lord and Graham governments and examined the evidence of my son and other children with needs that require education outside the regular classroom.  Please continue the option for individualized education outside the regular classroom for those like my son who require that arrangement.  And please do not eliminate valuable, proven resources like the Leo Hayes High School Resource Center that have contributed so much in the way of socialization, security and friendship for my son and others with similar needs.

Respectfully,

Harold L Doherty

Fredericton NB

All Autism Meltdowns Are Not Panic Attacks

On Twitter in the past 24 hours the questionably named Thinking Persons Guide to Autism does what it often does: distributing unproven, non evidence based, opinions as representing all there is to know about autism.

On this occasion the TPGA Re-Tweeted one person's opinion about meltdowns; offering the less than carefully thought out over simplification that autistic meltdown are panic attacks not tantrums. The problem with this statement is that it oversimplifies what is often, at least for my severely autistic son, a very complex behavior. With the concluding remark the "Thinking" Persons Guide To Autism then encourages others to RT this oversimplified, incorrect notion that all meltdowns are  panic attacks:

"TP Guide to Autism ‏@thinkingautism

RT .....  Autistic meltdowns are panic attacks, not tantrums. Pass it on. http://tmblr.co/ZufSAyU29DkK #autism"

My 16 year old son is severely autistic. He is also assessed with profound developmental delays. His meltdown behaviors are complex at any time. His meltdowns are not all triggered by the same events. Some appear to be frustration based in terms of the inability to do ... or to stop doing something when he obsesses with something like a Little Einstein video. Some times his meltdowns appear to be triggered by internal physical discomfort of various sorts. Some times they appear to be related to seizure activity. 

I am talking at this point only about my own severely autistic son not about other persons with autism disorders whether they be severely autistic with limited communication skills or whether they are High Functioning Neurodiversity activists promoting their perception of their autism condition as the universal reality for all persons with autism disorders.

I can not, and do not,  say that ALL persons with autism disorders experience meltdowns in the same way or for the same reasons as my son.  What I do say is that the person involved with the original tweet and the Thinking Persons Guide To Autism can not say that my son's meltdowns are always panic attacks.  

My son's  complex meltdown behaviors are just not that simple..... pass THAT on please!

This New Brunswick Autism Dad Asks YOU To Register Liberal Online Today and Vote for Mike Murphy

This autism dad asks New Brunswickers with autism, or autistic children or family members or friends, professionals working with autistic children and adults or people who just plain care to register Liberal today and vote for Mike Murphy as the next leader of the New Brunswick Liberal Party.  I do so because I believe registering with the Liberal Party and voting for Mike Murphy for leader offers the best hope for rebuilding NB's autism services system currently being dismantled by the Alward government.

Why am I asking you to register and vote for Mike Murphy? Because I believe he is the best hope for a better life for New Brunswick children and adults with autism disorders. In making this statement I am well aware that both of NB's "government forming parties" have initiated change for the betterment of autistic children and students although neither have made positive steps toward helping autistic adults. Positive changes for NB'ers autistic population started with Conservative Premier Bernard Lord and continued with Liberal Premier Shawn Graham. I have publicly thanked and acknowledged their contributions in the past and do so again.  But that was then and since the Alward government came to power, as expected, and as I predicted, much of that progress is being rolled back. 

Specifically the world class autism training provided by the UNB-CEL Autism Intervention Training program  to early intervention workers and education aides working with autistic children has been discontinued.  A theoretical in-house training plan has been developed which is a rehash of old plans submitted by Education department bureaucrats and rejected as lacking quality and integrity by the Autism Society New Brunswick.  Specifically there are no meaningful criteria for admission to the "in house" training, no significant testing or course completion requirements.  The in house training results will also be subject to challenge by the union representing aides and could become enmeshed in the grievance process. From the department's perspective though the "in house" system is cheap. That is why the department discontinued the UNB-CEL Autism program that provided quality and integrity for training autism aides and early intervention workers.

Education aides who already received UNB-CEL autism training and who have been working with autistic children are actually being replaced in some cases by aides with no autism training.  Alternative learning arrangements outside the mainstream classroom to accommodate severely autistic children are also being eliminated under the Alward government.  In particular, resource centres existing in some schools which provide an excellent service to severely autistic children and other children with serious challenges are targeted for elimination.

As with all previous governments no progress has been made towards a modern residential care system for NB adults with serious autism challenges. Such a proposal will not see the light of day in an Alward government which pats itself on the back for its inclusion practices while ignoring the plight of those with severe autism disorders living in psychiatric and general hospitals for lack of a modern autism residential care system as proposed by NB autism expert Paul McDonnell, Ph.D., psychology and clincial psychologist. 

If future autism progress is to be made in NB it will not be made under an Alward government. The alternative, at this time is the Liberal Party. The NDP may become a factor some day and perhaps before the next provincial election but to date NB'ers have had only 2 choices in electing a government Conservative or Liberal.  With the Liberal Leadership race on the choice of Liberal leader will have a huge impact on whether autism services have a chance of being restored.

There are nominally 3 candidates running for leadership of the Liberal Party. Of the three any discussion I have heard, with no offence intended toward  Nick Duivenvoorden, indicates that the race is between Brian Gallant and Mike Murphy.  I sat front row centre at the first public forum of the 3 Liberal candidates in Fredericton.  I was very impressed by Nick Duivenvoorden's personal qualities, especially his great sense of humor but I didn't hear a lot of specifics on policy issues.  Nor did I hear any specifics on policy issues from Brian Gallant.  The only  candidate who did provide detailed specifics was Mike Murhpy. That said: None of the three candidates provided any commentary at that session or since on "autism" issues.

Brian Gallant seems like an outstanding young man and a person with obviously unlimited potential in politics. But I do not see generally, and specifically with respect to autism, any reason to support him at this time.  I know he has powerful supporters like Dominic LeBlanc who left a robocall voice mail message on my home phone but powerful supporters, an allegedly new approach to politics,  and a background in corporate law do not provide me with any sense that Brian Gallant will have anything to offer to improve services for the 1 in 88 NB'ers with autism disorders.

Given that none of the candidates have provided an autism specific policy statement why would I endorse Mike Murphy, as I do, without reservation?  One reason, but it is not the major reason, is that I have known Mike Murphy since day 1 of law school.  I knew Mike as a friend than and after law school when we both worked at the same law firm in Moncton.  I know with certainty that Mike Murphy has, throughout the time that I have known him, helped people as an individual and has done so without seeking credit or recognition for doing so.  

I am asking specifically though that NB'ers with an autism interest register TODAY with the Liberal Party and support Mike Murphy and the major reason I am doing so is that I know, as an autism advocate over the past 12 years in NB that Mike Murphy stood with us back when NB's autism advocacy movement was going through a very active beginning phase.  I know and I could  say so under oath that Mike literally joined in our autism advocacy efforts.  As one specific example he assisted us in advocating for better treatment and care of an autistic man who was living at Centracare in Saint John.  More generally I have been able to engage Mike in discussion on autism issues and the importance of evidence based approaches to autism care at any time that I sought to do so.  And let me assure you of one thing, Mike understands  autism issues.

I am not trying to push anyone to act against their political leanings.  I am not asking you to vote for Mike based solely on our personal friendship.  Anyone who knows me, including Mike, knows that I would throw him under the bus in a heart beat if it would result in better autism services in NB. 

I am simply explaining why I, as an autism dad and autism advocate, believe the best thing we can do in NB at this time to rebuild and improve services for autistic children and adults is to register Liberal and vote for Mike Murphy.  If you agree please register online TODAY and vote for Mike. If you agree please encourage anyone you know with an autism interest to register Liberal TODAY and vote for Mike Murphy.

Respectfully,

Harold L Doherty

Ontario and New Brunswick Need Adult Severe Autism Care Facilities

Ontario and New Brunswick Both Need Adult Severe Autism Care Facilities

Where will our 16 year old son with severe autistic disorder and profound developmental delays live as we grow older and eventually die?  That is the biggest question I face, the question that I have to keep out of my thoughts each day, as we try, as best we can,  to help our son enjoy life while he is with us and in order to help him prepare, again as best we can, for the future.  For me,  the story of autistic 19 year old Toronto area teen Miles Kirsh told by Toronto Star Social Justice Reporter  Laurie Monsebraaten in the article Frantic parents search for housing for severely autistic son   is a story I understand very well.

As reported by Monsebraaten Miles Kirsh was diagnosed with autism at age 2. That is the same age our 16 year old son was diagnosed with autism. I suspect that Miles Kirsh's early age of diagnosis for that time period probably resulted, as was   the case with our son, from the severity of his autism disorder and its related challenges:

"Miles was diagnosed with autism at age 2. His parents largely cared for him on their own until adolescence hit and the family could no longer manage the growing boy’s often self-injurious behaviour and insomnia. Just after Miles turned 16, Kirsh asked the network to find residential care for him.

When he was a teenager, she drove Miles from the family’s Thornhill home every day to another specialized school at Yonge and Eglinton.

But Miles’ dangerous behaviour in the car to and from school —banging against the window and grabbing the steering wheel — combined with mounting family expenses and his tendency to wander unattended, prompted Kirsh to reach out."

Our son Conor has, at times, engaged in almost identical behaviour to Miles Kirsh as reported in the Star.    Our focus, to date, has not been on moving Conor out of our home. He has been a great joy for us notwithstanding the challenges he presents and I would guess the same to be true for Miles parents notwithstanding  their  separation  from the stress of the severe autism challenges of their son. 

The Star goes on to report the desperate need, in Toronto and across Ontario, for housing care for autistic adults.  The Star could have easily added "and in New Brunswick" and it would have been very accurate.I have,  both as an Autism Society New Brunswick representative and individually as Conor's dad, advocated over the past decade, without any measure of success, for the establishment of a severe autism adult care facility here in Fredericton near our autism expertise at UNB and at the Stan Cassidy Centre.  We have a general group home system that lacks the ability to provide care for severely autistic adults who are left to reside in psychiatric hospital facilities.   

The lack of government responsiveness to the need for adult autism facilities can be attributed generally to the financial challenges governments face.  Here in New Brunswick though we face another obstacle, a non-elected unofficial branch of government, the New Brunswick Association for Community Living. The NBACL  imposes its inclusion and community cliches on all public discussions and decision making processes necessary to arrive at real, evidence based solutions to the challenges facing the most severely affected by intellectual and developmental disorders. People like the autistic youth who was housed temporarily on a youth prison facility, people like the autistic adults who are sent out of the province, even out of the country to facilities like Spurwink in the State of Maine, people like those living in the psychiatric hospitals do not show up in the "feel good" PR activities of NBACL.  Here in NB we receive incessant lectures about "community" and "inclusion" but we don't have a modern  residential care and treatment facility that could provide care for adults with severe autistic disorders.

Professor emeritus (psychology) and practicing clinical psychologist Paul McDonnell has been a leading light in educating New Brunswick parents and officials about  autism disorders and evidence based effective means of treating autism disorders.  He provided his insight into what New Brunswick needs in a CBC online article Autism services needed for N.B. adults:

"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," he said.

Enhanced network

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes.

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

Miles Kirsh and his parents are facing a very uncertain future right now in Toronto. Where will he live? Where will he receive the care and treatment he needs? That uncertain future is very much a problem facing Conor Doherty and his parents too. Severely autistic adults in Ontario and New Brunswick all face very, very uncertain futures.  

Does a Canadian society that brings criminal prosecutions against parents who do not provide proper care for their children not really care about some of those children, children with severe intellectual and developmental disorders,  when they become adults? As a parent I can not accept that possibility, I have to believe that Canadians care, that our elected representatives care, and that we must continue to highlight the problems faced by adults with severe autism disorders and continue to advocate for long term care solutions. We have no choice.