It's Not Just Children with Autism - Stephen Harper Just Doesn't Care

Autism parent advocates have advocated for many years for a national autism strategy.  NDP and Liberal MP's and Senators including Peter Stoffer, Shawn Murphy, Andy Scott and  Jim Munson joined them in their efforts but no meaningful strategy has resulted in Parliament.  

Under Stephen Harper autism has been rejected as a concern by our federal government. A national autism symposium was cancelled and rescheduled after it became clear that serious autism advocates were slated to attend. The Harper government rescheduled  a sham national autism symposium to make sure that "local" representatives were put forth who would be  docile and not rock the boat by calling for federal funding across Canada of evidence based autism interventions.  

Medicare for Autism was not, and will not, happen under a Harper government.  Sure Mike Lake, a Conservative MP and father of a child with autism, will be happy to appear as a token autism parent/Conservative MP  at autism events to harvest PR for the Conservative Party but neither he, nor  Prime Minister Harper, will permit any serious discussion of a meaningful national autism strategy involving federal support of funding for evidence based autism intervention for all autistic Canadian children. Effective evidence based intervention for autistic Canadian children is just not up there with census forms in the Harper list of priorities

It comes as no surprise, given Harper's lack of concern about addressing Canada's national autism crisis,  that the same "not my problem", attitude of our PM is manifested in other non-action as seen in the following horror story from the Calgary Herald. A Canadian child visiting his stepfather in Oregon, who resided there for health reasons during the winter, was detained by state health authorities for riding a bike without a helmet.  He was in fact detained by the state for 2 years and placed in a succession of foster homes while his mother fought for his return to their home in Calgary.  Eventually he was returned and a lawsuit brought by the State of Oregon against his mother for child care expenses dropped after a group of lawyers stepped in to help.  The Canadian government under Stephen Harper remained on the sidelines as described in the Calgary Herald:

"No, the state of Oregon didn't prove -- it didn't even claim -- that Noah was neglected or abused by either his mother or stepfather, who unfortunately doesn't have the status of legal guardian to Noah.

But that didn't convince them to cave in to common sense for several months. In the end, it was most likely embarrassment that prompted their about-face, dropping the lawsuit citing an estimated $7,500 in costs for caring for Noah -- the story made headlines around the world, eventually catching the attention of TV news network CNN.

On Tuesday, both Kirkman and her lawyer, Daniel Mol, express thanks for others who have helped them in their cause, most notably lawyer Tony Merchant and The National Council for the Protection of Canadians Abroad -- who earlier stepped in to fill the void of a silent Harper government and filed an application under The Hague Convention in U.S. federal court, asking for the boy's return under international law.

But after the momentary joy over their victory, the most salient emotion they show is righteous anger.

"I never expected to be sued for the cost of them essentially kidnapping my son," says Kirkman outside court."

Harper and his autism dad spokesperson Mike Lake have said that because health care is within primary provincial constitutional jurisdiction it can take no action to implement a serious national autism strategy. That position ignores decades of cooperative efforts between federal and provincial governments to address important issues using all available Canadian resource regardless of strict constitutional categories.  What is interesting in the Kirkman  case is that the protection of Canadians in foreign countries, especially Canadian children, is a matter squarely within federal constitutional jurisdiction but Prime Minister Stephen Harper did nothing to protect a Canadian child abroad. 

Autism should be a non partisan issue.  Here in NB both Conservative Premier Bernard Lord and Liberal Premier Shawn Graham took steps to make NB a leader  in autism service delivery.  Federally though it is crystal clear that no serious national autism strategy will be developed as long as Stephen Harper is Prime Minister.

Let's face facts.  Our Prime Minister just doesn't care.  Period.

Former Premier Shawn Graham, A Strong Advocate for New Brunswick's Autistic Children, Expected to Resign Today

Shawn Graham & Andy Scott with autistic children and parents at the

autism intervention and community centres in Fredericton in 2007

Canada News Service reports that NB Liberal leader Shawn Graham will announce his resignation this morning.  As a father of a son with Autistic Disorder, and an autism advocate for over 10 years, I will regret his departure.  Shawn Graham while official leader of the opposition, and then as Premier of New Brunswick, helped New Brunswick become as stated by David Celiberti, president of the Association for Science in Autism Treatment, a leader in provision of autism services. Premier Lord had begun the early intervention program for delivery of evidence based autism treatment to NB preschoolers and had begun the training of teacher aides at the excellent UNB-CEL Autism Intervention Training program but Shawn Graham was active in pushing for these programs and in expanding them very significantly.  The people of NB said goodbye to him as Premier and today he is expected to leave.  

There are as yet no signs that Shawn Graham's commitment to evidence based intervention, treatment and education for autistic preschoolers and students in NB, in learning environments which accommodate their individual best interests,  will be carried on by  Premier Alward. To the contrary Premier Alward, and his cabinet ministers, are heavily influenced by the feel good philosophy of community living icon  Gordon Porter,  a member of Premier Alward's five man  transition advisory team, who has been openly hostile to autism representatives advocating modern evidence based approaches to educating autistic students.  Hopefully the gains made for autistic preschoolers and students during Shawn Graham's term as Premier will not be thrown away during the next four years.

Autism, Consultations and Conor Make for a Busy Weekend

This was a busy weekend for me. I participated in the Consultation on a Centre of Excellence for Children and Youth with Complex Needs Friday afternoon and evening and Saturday.  It was a privilege to be able to participate as a parent autism advocate. The consultation was organized by Bernard Richard, the Ombudsman/Child and Youth Advocate and an individual held in high regard by most people in New Brunswick. His stature is such that the recommendations of Mr Richard and his co-chair Shirley Smallwood a mother of child with autism and a long time advocate on autism and other issues together with the fact that  this process was  specifically requested by several Deputy Ministers means that the recommendations are likely to result in concrete  action being taken. 

I did not agree with everything said at the consultations but the process was good and there was a vigorous "discussion"of ideas and issues. Not surprisingly, my friends from New Brunswick's powerful community living organization did not agree with my perspective but the exchanges were both candid and courteous.  The co-chairs' advisory counsel comprised of  Dr. Simon Davidson, a child, adolescent and family psychiatrist at the Children's Hospital of Eastern Ontario (CHEO), Dr. Jacques Richard a psychology professor  and director of clinical training at the  Université de Moncton's and Dr. Tara Kennedy  a developmental pediatrician and clinical leader of pediatric autism rehabilitation services at the Stan Cassidy Centre for Rehabilitation in Fredericton gave excellent, well received,  presentations. 

One serious disappointment from my perspective was Mr. Richard's categorical statement, consistent with the community living corporation's influence in this and all other government processes involving special needs children and adults, that he would not be recommending any institutional placements or care.  As the father of a severely autistic son with intellectual disability I do not WANT my son to live in an institution at any time but I also know first hand the REALITY that there is currently NO ALTERNATIVE available in New Brunswick in terms of care for those most severely challenged by their disabilities. 

 

The feel good philosophy and buzz words of the quasi-governmental community living  corporation has worked wonders for those with less complex needs but has done little  to help the most severely challenged. I have been  to the psychiatric care facilities in Campbellton (where I received a full tour from the fine, caring and overworked professionals who operate the Restigouche hospital) and Centracare in Saint John, Although I do not want my son to end up living in these places I know that the group homes, and the so called "community",  do not take care of the most severely challenged. 

The proof of what I say is obvious. The proof is the residents living in the psychiatric facilities in NB and those who have been exported to Maine and other provinces for many years. The proof is the challenged youth who have been sent to a youth correctional facility in Miramichi because the "community" has failed them.  I will have other comments on the consultation process later, both positive and negative, but this obvious hijacking of the complex needs process by the community living corporation and its  feel good philosophy is most disturbing.  The consultations on youth with complex needs is in serious danger of failing to address the needs of those with the most complex and persistent challenges. The consultations are important and I am thankful to Mr. Richard for letting me participate even though I am an open and frequent critic of the failed community living philosophy in NB and even though I do not expect to have my concerns addressed.  It is better to have tried and failed than not to have tried at all.  

It  did take a day and a half of my time and it was important but I was away from family.  I made up for the missed time with Conor today.  Conor showed Dad  his new haircut from Saturday morning (thank you Angie at Clipper Blade in the York Plaza in Nashwaaksis).  We went for a nice walk along the St. John River and took a trip to the movies to see "Megamind".   As I have commented  before Conor hadn't been to a movie theatre in several years prior to this spring because of his inability to handle the stimulation and excitement. This spring though he made huge breakthroughs  going to the theatre (several times) to see Shrek, Tory Story 3, Despicable Me and now Megamind. His ability to handle the noise and visual stimulation of the theatre was outstanding again today.  His progress provided me with some optimism ... much more than I received at the consultations which appear to be destined to conclude with  buzz words and feel good cliches about community, hand wringing  and rhetoric over "institutions" ... but no alternative and no solutions for those most desperately in need of care and treatment ... life long care and treatment. 

 

 

 

Autism and Education: The Full Inclusion Mainstream Classroom For All Standard Discriminates Against Some Autistic Children

 

Extreme Full Inclusion Model of Education in Canada

 and New Brunswick has Discriminated Against

 Some Children With Autism Disorders

Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory, as was made clear by the Supreme Court of Canada in the Meiorin, Grismer, Law and Mercier decisions.

THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD

Presented by Yude M. Henteleff, C.M., Q.C.
to the
C.A.C.L. NATIONAL SUMMIT ON INCLUSIVE EDUCATION
OTTAWA, ONTARIO
NOVEMBER 24, 2004

The above document by Yude Hentelleff  QC should be mandatory reading for Educators and Human Rights Commission and Tribunal  members across Canada.  Unfortunately that does not appear to be the case particularly in New Brunswick where the extreme full mainstream classroom inclusion model has been pushed relentlessly by Gordon Porter, the New Brunswick Association for Community Living and senior officials in the Department of Education.  

Meanwhile some children, including some autistic children, for whom the mainstream classroom is not the right learning environment are forced into situations where they injure themselves, or others, in order to get out of an environment which is not the right option for them; an environment that overwhelms and harms therm.  My son, fortunately, has been accommodated in a separate learning environment for his primary ABA based instruction in our neighborhood schools with time spent in common areas of the school for other activities where he does get to interact with other students.  Conor was removed from the mainstream classroom, at our request, after he came home every day with bite marks on his hands and wrists.  He has been well accommodated by our schools and our school district. Other students for whom the mainstream classroom is not the right option have not always been so fortunate. 

Where Is the Evidence that Celebrity Autism Advocates are Causing Drop in Vaccination Rates?

Whenever information surfaces showing a drop in vaccination groups in any geographic area or social demographic group the media and public health authorities blame celebrity autism advocates for the drop. TIME magazine does exactly that in commenting on the National Committee for Quality Assurance (NCQA) Report indicating   that a drop in vaccination rates is occurring amongst children of wealthier parents while rates  actually increased amongst children of poorer parents.

TIME Magazine,  in an article titled Vaccination Rates Drop in Wealthier Kids: The Autism Rumors Take a Toll, stated:

Wealthier families, meantime, are getting too much of their health advice not from doctors and epidemiologists, but from talk shows, the blogosphere and the rumor mill, all of which are filled with vaccine scare stories. Making things worse is that the kind of folks spreading the tales are precisely the kind we find hardest to ignore.

"Very articulate, very good-looking movie stars or personalities ... are giving out information about how bad vaccines are," pediatrician Robert Frenck of the Cincinnati Children's Medical Center told the online health news service HealthDay. "Frumpy middle-aged doctors" find it awfully hard to compete with that.

   

The NCQA web site in a news releaase titled NCQA REPORT: QUALITY, SPENDING NOT LINKED; AUTISM FEARS SUSPECTED AS CHILDREN'S VACCINATIONS DECREASE IN PRIVATE PLANS states:

"Childhood vaccination rates in 2009 declined by almost four percentage points in commercial plans.

A possible cause of this drop is commercial plan parents may refuse vaccines for their children based on the unproven, but increasingly popular, notion that vaccines cause autism. Celebrity activists are outspoken advocates of this view. Interestingly, we see vaccination rates in Medicaid – the program serving the poor – continuing to steadily improve.

“The drop in childhood vaccinations is disturbing because parents are rejecting valuable treatment based on misinformation,” said NCQA President Margaret E. O’Kane. “All of us in health care need to work together to get better information to the public."

Neither  the TIME Magazine article, nor the NCQA news release, reference any studies which provide evidence that the drop in vaccination rates amongst children of wealthier parents is due entirely, or in part, to celebrity autism advocates and bloggers ....  good looking or not.

Insulting parents of autistic children (and celebrities) has not worked to restore confidence in parents that vaccines are safe generally or that they are NEVER involved in causing autism in ANY cases even amongst children of women injected with mercury containing vaccines while they were pregnant. I have commented previously (1) (2) on the insanity of continuing with this failed strategy while hoping for a different outcome yet the NCQA and TIME continue to do so.

Unlike the intellects at TIME and NCQA I will not assume that they will ever learn their lesson. I do not expect public health authorities, or TIME, to learn that maybe it is time to start treating the public with respect and make their case with solid, credible studies both as to the cause of drops in vaccination rates and on whether vaccines contribute to autism or any other disorders. Former NIH Director Dr. Bernadine Healey has stated that comparative studies comparing autism rates amongst vaccinated and existing unvaccinated populations should be done but no such study has been attempted. Instead excuses are offered by public health authorities who continue to dismiss, and attack, anyone who asks questions about the efficacy or the safety of vaccines.

There is no evidence that TIME or public health authorities will ever change their view of the public as ignorant, unwashed and incapable of understanding serious issues. It appears to be far easier for public health authorities to blame the public, or good looking high profile members of the public, than to convincingly demonstrate the safety and efficacy of vaccines.

Autism Epidemic Deniers Grasp at Wisconsin Straws

Both Kev at lbrb and the  former journalist who purports to offer evidence based autism sources to journalists at AutismNewsBeat have jumped on the new Wisconsin  study to push their non evidence based beliefs that autism is 100% genetic and that there are no environmental factors involved in causing autism. The study  does not appear to be, as described on  Milwaukee Magazine news buzz online a study to determine whether environmental factors were involved in causing autism. It appears simply to indicate that in some Milwaukee school districts autism cases with lower reported cases have caught up to other districts  and have now leveled off at the current CDC autism estimate rate of 1 in 110.

How that study means anything in the understanding of autism causes as opposed to education district practices in Wisconsin  is not explained clearly by Kev or ANB both of whom use the study to discount possible environmental triggers of autism generally.  

In discounting the existence of an autism epidemic and the existence of environmental causes of autism both the Neurodiversity ideologue Kev and the purportedly evidence based journalist ANB ignore the  testimony heard recently at the US Senate by several expert autism researchers and government officials including the following testimony of Issac N. Pessah Ph.D. Professor, Department of Molecular Biosciences, College of Veterinary Medicine, Director, UC Davis Children’s Center for Environmental Health and Disease Prevention University of California, Davis, Department of Molecular Biosciences :

"Although autism risk has strong heritability, no single locus alone appears to be sufficient to account for the full clinical phenotype. Results from many genomewide autism screens indicate that potential susceptibility genes are spread across the entire genome. Recently several very rare genetic mutations, single nucleotide polymorphisms (SNPs), de novo copy number variations, and epigenetic factors that influence DNA methylation were shown to contribute complexity in the transmission of autism risk. Yet genetics alone cannot account for the majority of autism cases currently being diagnosed. There is lack of full concordance between monozygotic twins, with some estimate ranging as low as 60%, and the prevalence of ASD among siblings has been reported as high as 14%. Interactions among multiple genes are likely to contribute to various types of autism, and heritable epigenetic factors and/or non-heritable environmental exposures are likely to significantly contribute to susceptibility and variable expression of autism and autism-related traits. It is therefore likely that constellations of epigenetic and environmental factors are contributing to the increasing prevalence of ASD, a rise that cannot be fully accounted for by changes in diagnostic criteria.


....


There is a critical need to identify environmental factors, including exposure to xenobiotic chemicals and changes in diet that contribute to autism risk and severity. The vast majority of public and private resources has, and continues, to support work on identifying genetic impairments associated with autism risk. From these studies we have learned that genetics alone cannot predict the majority of autism cases, the patterns of impairments, severity, nor can they predict success for current treatment modalities. Moreover, we have learned that many of the molecular and cellular systems that are associated with autism are the very same ones that are the target of environmental chemicals currently of concern to human health because of their widespread use.




We know that autism prevalence continues to increase dramatically clearly implicating environmental factors in autism risk. We must identify which environmental exposures and combination of exposures are contributing to increased overall risk in the population and identify the most susceptible groups. Only by bringing together the concerted effort of multidisciplinary teams of scientists can we identify which of the >80,000 commercially important chemicals currently in production promote developmental neurotoxicity consistent with the immunological and neurological impairments identified in individuals with idiopathic autism. It is clear that there is a critical need to identify which chemicals in the environment that influence the same biological pathways known to be affected in autism. Limiting exposure to these chemicals is the only way to mitigate or prevent autism in susceptible individuals.

Both Kev and AutismNewsBeat ignore serious evidence and analysis from expert government and academic researchers which point to environmental triggers of real increases in autism. Instead they grasp at a Wisconsin study which shows that some education districts in Wisconsin caught up to the other Wisconsin districts at the current 1 in 110 estimated prevalence level of autism disorders.  The study may well have implications for education practices in Wisconsin. It is difficult to see how it addresses the studies, evidence and analysis offered by government and academic autism experts in US Senate hearing clearly implicating environmental triggers of autism.  For reasons unknown both Kev and ANB WANT autism to be 100% genetic and they will continue, on the flimsiest grounds, to discount the role of environmental factors in causing autism disorders and in explaining the horrific rise in autism diagnoses over the past 12 years from 1 in 500 to 1 in 110.  

Kev and ANB continue to deny the evidence and expert opinion that autism is caused by the interaction of genetic and environmental factors. They will continue to deny that the increase in reported cases of autism disorders is real in whole or in part.  They will continue to grasp at straws wherever they can find them .... in Wisconsin or elsewhere.

Autism, Capitalism and the Autism "Self" Advocacy Industry

I don't usually find much of value in the various Neurodiversity commentaries on the internet. From Jim Sinclair to Ari Ne'eman it is always the same claim by some very high functioning person to speak on behalf of all persons with autism including those, like my son,  with actual Autistic Disorder diagnoses who are severely affected by their autism disorders. I commented yesterday in my post Autism is a Mental Disorder for Which Cures Should be Sought on the tendency by some self proclaimed autism representatives to  describe autism as everything but what it is .. a medical disorder ...  a mental disorder, a diagnostic category in the DSM and ICD.  Today I read a comment on a site  cripchick's blog  called Autism, Capitalism, and the Establishment which I found interesting even though I disagree with much of it. In that comment cripchick criticizes what she describes as an autism advocacy industry. She  places her criticisms of the alleged autism advocacy industry  in the context of what she describes as the Non-Profit Industrial Complex (NPIC):

Non-Profit Industrial Complex (NPIC) is a system where non-profit organizations become about making money and maintaining the status quo. A lot of people feel offended by the NPIC critique, but without this conversation we can’t really talk about the environment we are trying to create change in, the role institutions play in our work, or our vision for the world we want to live in.

This is what the INCITE! Women of Color Against Violence , an organization who has been doing a lot of work around the role of the NPIC, says about the NPIC:

The state uses non-profits to:
Monitor and control social justice movements;
Divert public monies into private hands through foundations;
Manage and control dissent in order to make the world safe for capitalism;
Redirect activist energies into career-based modes of organizing instead of mass-based organizing capable of actually transforming society;
Allow corporations to mask their exploitative and colonial work practices through “philanthropic” work;
Encourage social movements to model themselves after capitalist structures rather than to challenge them.

It has been a long time, maybe decades,  since I have stumbled upon such an anti-establishment critique.  Like most such commentaries it is often easy to mock and dismiss but there are some thought provoking elements in the critique. Essentially though she cripchick alleges that autism advocacy causes are  governed by self interest , eg. paid, sometimes government and industry subsidized,  charity directors and officers, and used by state and industry interests to prevent positive social change.

It would be interesting to apply cripchik's critique to the autism "self " advocacy industry and to those very high functioning professionals who have made careers, sold books and otherwise promoted their own very personal self interests by promoting themselves as "autistics" who do not want to be cured and who, although they have a medical diagnosis of autism or Aspergers, do not see themselves as having a medical disorder.  By pretending that autism disorders are not medical, mental or psyshiatric disorders does the autism "self" advocacy industry reduce pressure on government and industry to find the external or environmental causes of autism disorders. Does the autism "self" advocacy industry, with its anti-cure rhetoric take the pressure off of governments to find cures for a mental disorder which now affects 1 in 110 persons including 1 in 70 males?

cripchik doesn't take her radical critique that far though. She sticks to criticizing those parts of the autism advocacy industry that work towards, or purport to work towards, goals such as curing autism.  She provides no similar critique of the anti-cure autism "self advocacy" industry.  Her criticism, in the end, seems little more than another variation, a "natural" variation, of the same old autism self advocacy industry denials that autism disorders are in fact medical disorders.

Autism is a Mental Disorder for Which Cures Should be Sought

About DSM-5 

Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.

 American Psychiatric Association, DSM-5 Development, About DSM-5

Autism is, by definition, a mental disorder. Autism is, by definition a psychiatric disorder. 

These autism realities are often ignored in the attempt by some persons to claim that they speak on behalf of persons with autism.  These same persons, purporting to speak on behalf of all persons with autism disorders, claim that "THEY" do not want to be cured.

 

The politicking involved in maintaining the impossible position of speaking for all persons with a mental disorder is challenging even with the backing of the New York(er) magazine and the IACC. Flip flopping is  frequent with discussion focusing on autism as a socially imposed disability rather than a mental or psychiatric disorder. The same "autism spokespersons" who purport to speak on behalf of people with mental disorder diagnoses avoid like the plague any mention of autism as ...... a mental disorder.  Although they embrace the autism label, a diagnostic category in the DSM they make no mention of what it actually is ... a mental disorder.  

A social disability, a way of life, a culture, a different way of thinking, a different part of a neurodiverse existence. All of these things for sure but not a mental disorder.  And they want me to reject what I know about my son's Autistic Disorder, his mental disorder, based on 14 years of living with him, caring for him, loving him .....  in favor of the views of some adult diagnosed persons views who do not know my son and  who do not acknowledge the reality of their own diagnoses?

Today is a day on which some in the online autism world are shutting down social communication in an attempt to draw attention to communication deficits suffered by persons with autism. It is an interesting idea and I hope it creates some buzz even though I am not participating. 

I have long ago chosen to speak out about autism disorders and on this day I choose to go back to basics and point out a basic that is becoming more and more obscured ... autism is a mental disorder.  It is a mental disorder which imposes severe life restrictions on many who suffer from it and can not drive Land Rovers, operate successful businesses, play in rock bands, attend colleges for gifted youth or work as researchers with prominent high functioning autism experts. 

Autism is a mental disorder for which we must not stop trying to find treatments and cures to improve the lives of those who suffer from the disorder. 

Low Functioning Autism Reality and Autism Posers at New York Magazine

New York Magazine Says Aspergians and High Functioning Autistics, like 

Ari and Alex Shown Posing for their NY Magazine Coronations,   who Socialize

with Washington Pols and NY Media, Drive Land Rovers, Produce  Videos

with Autism Speaks; and Argue with Experts at IACC  Meetings 

Represent, and Speak for, People with Autism

Many parents and siblings of persons with low functioning autism might  disagree

****************************

I received the following email from Wanda James in the Upper Ottawa Valley and post  it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.

***************************

"Hello

I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.

I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted.  I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam.  I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )

I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.

Hope you don't mind me writing.

Take care

Wanda James

Ottawa

****************************

If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities,  people whose "autism" has little if anything in common with my  severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus.  Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.

Occasionally I hear from parents or other persons with a loved one with  low functioning autism who face challenges similar to my son.  Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New York Magazine etc)  anointment of "new" voices of "autism", of new "leaders" of autism.  Where did Ari Ne'eman come from before the New York Magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordinating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?

Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating  positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to  swelter to death, unable to remove himself from a hot van in Pennsylvania.  For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. 

Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability.  Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting,  the definition of autism in the DSM-5.

 The New York magazine is unlikely to visit  any time soon some of the institutions  and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van.  In all fairness though it could be difficult to get some of autistic residents in those facilities to pose  elegantly for some "glam" shots for the New York Magazine.


Those of us with children, siblings and loved ones  severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. 

We have no choice.  Our severely autistic loved ones have no alternative.

Manslaughter Charged in Hot Van Death of 20 Year Old Man with Severe Autism

Stacey Strauss of Philadelphia has been charged with manslaughter in the death of  Bryan Nevins, a 20 year old man with severe autism, who was allegedly left  in her care the day he was left to die in a sweltering hot van.  As reported by Jo Ciavaglia, Bucks County Courier Times, the court heard horrific testimony about  Nevin's death, including the fact that when  Bryan  Nevins was  pulled out of the locked van, hours after it had returned to the Woods Service facility,  his skin started slipping off his body. 

Ms Strauss has been charged, not convicted,  and if the matter proceeds to trial, she will do so with a presumption of innocence and with the burden on the state of proving her guilt beyond a reasonable doubt. The arguments at the preliminary hearing  indicate that her legal counsel will argue that Nevins' death was a horrific accident that resulted from a "system wide" failure and that the blame goes beyond his client.

A court in Pennsylvania will decide whether Stacey Strauss is guilty as charged and this Canadian lawyer will not presume to know what that court will decide. Legal issues aside though this father of a 14 year old boy with severe autism who knows that some day, some one, or some persons, will be responsible for caring for my son, hopes with all my heart that they  provide much, much, better care than Bryan Nevins received.

Association for Science in Autism Treatment: New Brunswick (Canada) is Already a Leader in Autism Treatment

During the recent election campaign CBC published on its web site an article by New Brunswick autism expert Dr. Paul McDonnell. The CBC headline read “N.B. Can Be a Leader in Autism Services" and the article appeared on September 14 2010.   David Celiberti BCBA-D, President Association for Science in Autism Treatment, commented on that article pointing out that New Brunswick is already a leader in autism services. Dr. Celiberti is very familiar with New Brunswick's autism service delivery, having spoken in Fredericton and having met with parents, autism advocates and autism professionals here.  His comments on the CBC article can be found on the ASAT website under the title ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" and are set out following this introduction. (The bold blue emphasis is added by me - HLD)

ASAT's recognition and encouragement to continue in our efforts here in New Brunswick are most welcome.

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment

What Autism Spectrum Disorder Severity Criteria Are Being Evaluated In The DSM-5 Clinical Field Trials?

Deborah Brauser, in an article on the Medscape Today website, advises that the APA has begun field trials for the DSM-5 diagnostic critieria including severity criteria which makes the APA's failure to disclose the proposed severity criteria curious, at least to this interested father of a 14 year old,  with an Autistic Disorder (DSM-IV) diagnosis and assessed with profound developmental delays:

October 19, 2010 — The American Psychiatric Association (APA) has announced that standardized field trials have now started in preparation for the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). .... Severity measures, through the use of questionnaires and other tools to help assess patient symptom severity on a rating scale, will also be examined during the field trials, as will "cross-cutting dimensional measures." These are tools for "assessing symptoms that occur across a wide range of diagnoses, such as anxiety or sleep problems." 

Severity criteria are being examined in the field trials which are already underway? If  so, if severity criteria for the New Autism Spectrum Disorder, Autistic Disorder in the DSM-5, are already established,  then why are they still not mentioned on the DSM-5 web site which tells interested persons to check back for updates on the subject?

Some disorders do have severity criteria posted on the DSM-5 web site:

Bipolar II Disorder
Personality Disorder Types
Attenuated Psychotic Symptoms Syndrome

Not all of the disorders, existing, newly proposed disorders or reclassified disorders have severity criteria published on the DSM-5 site. Presumably different work groups for the DSM-5 have reported in with their proposed criteria at different times but the fact that the severity criteria are being assessed in the field trials has to mean that each of the proposed disorders have in fact had the associated severity criteria established.  An article published in the American Journal of Psychiatry, Moving Toward DSM-5: The Field Trials,confirms that the clinical field trials will include evaluation of the related severity criteria for each disorder being studied, including autism:


"Formal field trials will involve the testing of between two and five specific diagnoses at any one site. The diagnoses tested at a site will depend on their relative frequency there. For example, major depressive disorder and complex somatic symptom disorder can be evaluated at a general medical clinic, but autism spectrum disorders require evaluation in a specialty psychiatric clinic specializing in these disorders.  ...... At each site, a research coordinator, trained and monitored centrally, will record each successive entry to the clinic over a specific time period to provide necessary sampling weights for that site's variance in reliability and validity. DSM-IV diagnoses obtained for clinical purposes at each site will be used to place each consenting patient into either a stratum likely to be rich in a target diagnosis at that clinic or a stratum consisting of a random sample of all other diagnoses. The goal is to recruit 50 patients per stratum per site, a total of 150 to 300 patients for each diagnosis under evaluation, to have adequate power for a site-specific determination of precision. Two DSM-5-trained clinicians who are new to the patient will be assigned to conduct independent clinical interviews of the same patient at least 4 hours, but not more than 2 weeks, apart. The attending clinician will be able to observe the interviews. The interviewing clinicians will know the target diagnoses at that site but will be blinded to the stratum to which each patient is assigned and to the attending clinician's diagnosis. The interviewing clinician at each session will be provided the patient's current crosscutting assessments, conduct a clinical interview with the patient, make one or more categorical diagnoses using DSM-5 criteria, and complete associated dimensional severity ratings.   [bold and underline emphases added]

The Autism Spectrum Disorder(s), including their severity criteria, are being evaluated at  clinical field trials now under way and yet the severity criteria are not posted despite entreaties by the DSM-5 to check back for updates under that category.  It would seem reasonable to speculate that their are reasons for this failure and that those reasons relate to the feedback received, much of it from persons who objected to Aspergers being grouped together with Autistic Disorder, with its high number of persons who are also Intellectually Disabled.

Any speculation about motives for the failure to disclose the autism spectrum disorder severity criteria is exactly that .... speculation. Unfortunately the APA has provided no  real information for the public to consider as clinical field trials are underway which could impact the lives of many persons with Autism Disorders, including the 75-80% who have  allegedly "co-morbid" intellectual disabilities.  The public, in the midst of such an important process, a process trumpeted wide and far for its transparency and public participation,  is simply left to speculate.

Saskatchewan, Canada's Autism Wasteland, Is Exhibit 1 in the Case for a National Autism Strategy

More than three years after I described Saskatchewan as Canada's Autism Wasteland the label still accurately describes the state of autism services in the prairie province according to a FEAT opinion article in the Star-Phoenix. 

The Families for Effective Autism Treatment article argues that some money has been spent but it has been spent ineffectively and cautions anyone with an autistic child not to move to the "Land of the Living Skies" as Saskatchewan markets itself:

It sounds impressive when you hear about all the money being put into autism and programs the government is running, but ask families across Saskatchewan about how well this money is being spent. Ask our government for current and regular report cards. Ask what successes it has accomplished with these new programs and positions. Ask it to provide statistics on how many individuals receive adequate and professionally trained support.

Ultimately, individuals with autism continue to lose.

....
 

Our children do not have time to waste while valuable dollars are spent creating expensive, ineffective services that aren't based on evidence and research. Our children need the help of proven therapies before they become another sad statistic lost in Autism's Wasteland.

Let your voice be heard for those who cannot. Saskatchewan can't afford to keep spending millions of dollars for ineffective programs that do not help individuals with autism. Let's use the money wisely and try not to re-create the wheel.

SASKFEAT is demanding immediate individualized funding, which is not income tested, until an acceptable and proven autism strategy is in place in Saskatchewan -- a strategy that addresses the lifetime needs of all individuals with ASD, and that is delivered across this province. Our families have been waiting and suffering long enough.

3 years after Saskatchewan started to fund autism services they still do not have an effective autism strategy in place. It is the autistic children of Saskatchewan who lost their 3 years of development potential, particularly during their early years between 2 and 5, who will have lost the most and who will pay the price for government and bureaucratic nonchalance or incompetence. 

Saskatchewan, Canada's Autism Wasteland, is also Exhibit 1 in the case for a National Autism Strategy.

Autism Services in New Brunswick 2010 Update

I would like to thank Fredericton's Daily Gleaner for publishing my letter to the editor concerning the state of autism services in Canada, and more specifically in New Brunswick, in October 2010.


Many do not know that Autism Awareness Month is recognized in October in Canada not April as in the US.


I have been blogging about autism issues for four years and it is easy enough to publish my own comments on this humble blog. It is a big boost though when the assistance, and reach, of a long established local paper is provided.


As stated in the Daily Gleaner today:



Adults with autism need help


Re: Autism


October is Autism Awareness Month in Canada.


Autism is a disorder which is diagnosed based on communication, social and behavioral challenges.


Approximately 75-80 per cent of persons with the most severe form of autism, Autistic Disorder, also have intellectual disabilities.


When my son was diagnosed with Autistic Disorder 12 years ago, the Center for Disease Control in the U.S. estimated that 1 in 500 persons had an autism disorder. Today that CDC estimate has risen to 1 in 110.


Many autistic children and adults can't function on a level which would permit them to live independent lives.


Despite these realities, our federal government has done nothing to deal with Canada's growing autism crisis, preferring to leave autism as a provincial responsibility.


Across Canada provincial governments have provided varying levels of responses. Fortunately for my son, New Brunswick has actually been a leader in developing early intervention and school services for autistic children.


The government-funded early intervention services, provided by competent trained staff at the autism intervention centres, makes New Brunswick a leader in that area.


The UNB-CEL Autism Intervention Training Program, which has received high marks by the most expert professionals on external review, has provided training to staff at the early intervention centres and to approximately 500 teacher assistants and resource teachers in New Brunswick schools.


Severely challenged autistic children like my son are able to receive instruction in quieter environments within neighborhood schools, while visiting common areas of the schools like gyms, pools and kitchens for socializing purposes.


As a long time advocate for these evidence-based services for autistic children I thank former premiers Bernard Lord and Shawn Graham for their rich contributions to New Brunswick's autistic preschoolers and students.
And I thank the many parents who fought so hard to draw attention to the need for these services.


I also thank professionals who have led the way like Dr. Paul McDonnell, Dr. Annie Murphy, Dr. Tara Kennedy, all the directors and staff of the autism intervention centers and Ann Higgins of the UNB-CEL Autism Intervention Training Program.


We have all failed, however, to improve the living conditions of autistic youth and adults, some of whom live in desperate conditions on hospital wards, with over-challenged and increasingly elderly parents and in psychiatric hospitals.


Autistic adults, as Professor Emeritus Paul McDonnell has recently stated, are badly in need of a modernized residential care and treatment system. We must act now to help autistic adults in New Brunswick.


Harold L. Doherty
Fredericton

Autism Speaks Walks the Plank

There was a time when I was an enthusiastic supporter of Autism Speaks. That time has passed. I apologize to anyone who might have been influenced by my earlier support to view Autism Speaks as a legitimate spokespersons for those severely affected by autism or the parents fighting to help their children who are truly and seriously affected by autism disorders.

AS has raised the profile of autism around the world, worked together with the state of Qatar to establish World Autism Awareness Day, and raised funding for autism research. When some of the research money went to notorious anti-cure "autism" researchers like Dr. Laurent Mottron I began to have serious doubts about Autism Speaks. It began to look like a bureaucracry shifting with the winds of political correctness as defined by a few major media organizations which seldom portrayed autism as functional disorder which restricts the lives of many with Autistic Disorder and  some with Aspergers Disorder. The bringing on board of successful businessman John Elder Robison as an "autism" self advocate was a serious alarm.  The final alarm though is the recent affiliation with Alex Plank, an allegedly "Aspergian" young man who is also very successful socially, and in the world of the internet, a young man whose web site, amongst other trashy commentary, praised the fact that Dr. Ivar Lovaas had died recently. 

Autism's Gadfly, Jonathan Mitchell, has written an excellent commentary, Mr. Robison Goes to Washington,  on the ill advised role of John Elder Robison as a science adviser for Autism Speaks, an organization which apparently no longer speaks for parents of children with autism, or for autistic persons like Jonathan Mitchell, who would like to see more research aimed at finding a cure for autism disorders.  In the following video, co-sponsored by Autism Speaks, Alex Plank, John Elder Robison's son and an allegedly "Aspergian" young lady mock various toys sold at an autism conference.   Whether the toys are of any therapeutic value, whether autistic children or any children, enjoy playing with them I don't know. What is offensive is the sight of these very capable young people, including Mr. Plank who makes reference to his Land Rover,  mocking the efforts of parents to help their children whether those efforts are ultimately successful or not. The video is set in front of bookshelves filled with books and obviously these are intelligent young people in the video even if their sense of humor is offensive as I in find it to be.  

The mocking humor displayed by Mr. Plank and young Mr. Robison is  mild stuff by the standards at Mr. Plank's Wrong Planet web site where the death of Dr. Lovaas was cheered and parents seeking cures are routinely mocked and derided by self professed Auties" and "Aspies".  Why these obviously intelligent people,  including John Elder Robison,  huddle together under the banners of what are, by definition, mental disorders defined in the DSM, is beyond me. 

What is clear is that Autism Speaks has abandoned any pretense of seeking to  speak for the families of seriously autistic children  and autistic adults who seek cures for their autism disorders.

Autism Speaks, and its integrity, have walked the Plank.

An Autism Update You Should Read

If you are looking for a thorough, balanced and informed autism update I recommend that you look at  Update on Autism Issues in Treatment and Comorbidity by By Bryna Siegel, PhD, Eva Ihle, MD, PhD, Elysa Marco, MD, and Robert L. Hendren, DO at UBM Medica Psychiatric Times, October 15, 2010. The authors cover a wide range of issues in the increasingly complex picture of autism disorders. Prevalence, diagnostic assessment and classification, co-morbidity and treatment issues are canvassed. With comment on such a wide range of often controversial topics there are bound to be some that you disagree with  (I found some comments questionable)  but I recommend this article as a good use of your time if you are interested in understanding what our  current view of autism looks like.

Autism and fMRI Study: Autism Research Distorted, Once Again, by Exclusion of Low Functioning Autism Subjects

Another fMRI imaging study of brain connectivity in subjects with autism is reported in the Oxford journal Cerebral Cortex, October 12 2010.  I have highlighted  the article, Decreased Interhemispheric Functional Connectivity in Autism, abstract description of the study's autism participants .... all persons with High Functioning Autism.  Once again, the study which puports to draw conclusions about "autism" presumably referring to all of the Pervasive Developmental, or Autism Spectrum Disorders, excludes those most severely affected by autism disorders:

Decreased Interhemispheric Functional Connectivity in Autism

Abstract

The cortical underconnectivity theory asserts that reduced long-range functional connectivity might contribute to a neural mechanism for autism. We examined resting-state blood oxygen level–dependent interhemispheric correlation in 53 males with high-functioning autism and 39 typically developing males from late childhood through early adulthood. By constructing spatial maps of correlation between homologous voxels in each hemisphere, we found significantly reduced interhemispheric correlation specific to regions with functional relevance to autism: sensorimotor cortex, anterior insula, fusiform gyrus, superior temporal gyrus, and superior parietal lobule. Observed interhemispheric connectivity differences were better explained by diagnosis of autism than by potentially confounding neuropsychological metrics of language, IQ, or handedness. Although both corpus callosal volume and gray matter interhemispheric connectivity were significantly reduced in autism, no direct relationship was observed between them, suggesting that structural and functional metrics measure different aspects of interhemispheric connectivity. In the control but not the autism sample, there was decreasing interhemispheric correlation with subject age. Greater differences in interhemispheric correlation were seen for more lateral regions in the brain. These findings suggest that long-range connectivity abnormalities in autism are spatially heterogeneous and that transcallosal connectivity is decreased most in regions with functions associated with behavioral abnormalities in autism. Autism subjects continue to show developmental differences in interhemispheric connectivity into early adulthood.

HealthImaging.com reports on the study in Study: fMRI reveals functional differences in autistic patients and included the study authors' qualifications on the limits of the study including the fact that the study, conclusions, despite the titles of the Cerebral Cortex report and HealthImaging.com article, could not be extended to Low Functioning Autistic patients.

The authors acknowledged that limiting their study to high-functioning young autistic males restricted their findings from being extended to females, younger children or lower-function ASD patients. Nevertheless, Anderson and colleagues emphasized that “Our finding adds to growing evidence that abnormalities of interhemispheric connectivity in autism are widespread but regionally specific and related to cognitive and neurological impairments commonly found in the disorder.”

The authors posited that their findings highlight MRI as a  potential tool to assist physicians in diagnosing and treating autism.

In one breath the study authors acknowledge that the exclusion of low functioning autistic patients restricted their findings from being extended to those patients (or to other excluded groups, including females and younger children). In the next breath though, and in the title of their report and magazine articles the study findings are reported as being applicable to autism generally. 

This is not the first study to exclude low functioning or intellectually disabled autistic subjects from "autism" studies. Prominent autism researcher, and DSM-5 panelist,  Catherine Lord has identified the  tendency to exclude autistic subjects with severe to profound intellectual disabilities:

"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".

The lip service qualifying statement in this recent fMRI study report did not preclude the authors from making generalizations about autism as found across the spectrum notwithstanding the exclusion of low functioning autistic persons from the study. Articles commenting on this and other studies may or may not repeat that qualification.  Most certainly all will be accompanied by headlines reporting new "autism" findings.  Low functioning autistics are routinely excluded from major media institutions that like to focus on the barely affected, very high functioning persons with Aspergers or HFA, the Ari Ne'emans, Alex Planks, JohnMichelle Dawsons and Temple Grandins.  

As in the popular media, so too in "scholarly", "scientific" research. "Autism" just doesn't meant what it use to.

Alleged "autism" spectrum research is anything but representative of the autism "spectrum" disorders.