Facing Autism in New Brunswick

Millions for Woodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question

2012-01-25T03:55:00.004-04:00

Second from Left, NB Premier and Woodstock MLA David Alward
PHOTO BY MICHAEL MACDONALD/NBCC WOODSTOCK

On January 4 2012 I emailed New Brunswick Premier David Alward and relevant cabinet ministers the following inquiry which asked simply whether his government was considering helping autistic adults and is working on a modern, reality based model. I also asked if such an undertaking was not being considered to please say so straight up.

Health Minister Madeleine Dubé's office was the only one to acknowledge receipt of my email. I have received no substantive response to my question or concerns to date from Premier Alward or any of the relevant Ministers. The question itself requires no research, no public consultations. It is a simple information request. The question of adult autism residential care has haunted parents of severely autistic children in New Brunswick for many years. It was probably expecting too much to receive a prompt answer to a direct question.

In the meantime though 8 million dollars of federal and provincial dollars are being poured into upgrading a civic center in the Town of Woodstock in Premier Alward's riding. No time to answer a simple question about adult autism care in New Brunswick but lots of time and money for a civic center in Woodstock. I absolutely do not begrudge the good people of Woodstock an upgrade to their recreational and community center but a few minutes to answer a simple question about adult autism care does not seem unreasonable either. Maybe I should have used an old fashioned letter for my inquiry and mailed it with a Woodstock P.O. Box return address?

January 4 2012

Dear Honourable Premier, Honourable Ministers
and Respected Recipients

Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need

I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days. At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago. Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment

I also advocated for adjustments to the total inclusion education model in our schools. My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs. Our children have, at times, been sacrificed to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.

Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care. At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults. Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities. The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew. It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities.

I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on. Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help.

I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border. I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine.

In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years. We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped. Autistic adults need a place to live. My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.

Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model. If that is not in the works, please say so straight up.

Respectfully,

Harold L Doherty,
Conor's Dad

1. A Place for Conor What resources are available when you’re growing up with autism?
2. Autism services needed for N.B. adults
3. N.B. can be a leader in autism services
4. Autistic boy kept in New Brunswick jail, Toronto Star, October 19, 2005

Catherine Lord Confesses: DSM-5 Autism Spectrum Disorder Intended To Exclude Intellectually Disabled

2012-01-21T15:07:00.000-04:00

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

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

The above reference to, and quote of, Dr. Catherine's Lord about the DSM-5 committee's intent to exclude intellectually disabled from further autism diagnosis was important journalism by Amy Harmon even if it was simply an inadvertent by product of her exploration of HFA and Asperger's in the DSM-5's New Autism Spectrum Disorder. Ms Harmon has shown considerable interest in HFA and Asperger`s while largely ignoring those severely affected by autism disorders. To here credit her article about worried observers relates primarily to those high functioning groups but did cough up the above confession by Dr. Lord. Ms Harmon consistent with her slant towards covering High Functioning Autism then moved on and glossed over the admission by Dr. Lord. In Amy Harmon World as in Dr. Catherine Lord`s DSM-5 the intellectually disabled just don`t count and will be excluded from the Brave New Autism Spectrum Disorder.

To my knowledge I am one of the first, and few, persons to comment on the intentional exclusion of the intellectually disabled from the autism spectrum in the DSM-5; despite their historical presence on the "spectrum"` as a vast majority of those with classic Autistic Disorder. One person who pursued my concerns was Lisa Jo Rudy, then of the About.com autism site, who obtained the following information from Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group:

"My Question for Dr. King

There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?

His Response

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

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

When I read Dr. King`s reply to Lisa`s question I was skeptical. I had difficulty rationalizing his answer with the express wording of mandatory criterion A of the DSM-5`s new Autism Spectrum Disorder which requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Dr. King stated that it was not the DSM-5 committees`s intent that children with mental retardation (now to be known as Intellectual Developmental Disorder) would be disqualified from receiving an Autism Spectrum Disorder diagnosis. Dr. Catherine Lord`s appears to say exactly the opposite. Dr. Catherine Lord takes issue with the Volkmar data base and study that has prompted the current fears over exclusion of persons with HFA and Asperger`s from a DSM-5 Autism Spectrum Disorder diagnosis.

Dr. Lord is undoubtedly correct and Amy Harmon and the New York Times need not worry. The DSM-5 targets for exclusion from the new ASD diagnoses are not those with HFA and Asperger`s. Those who will be excluded are the invisible autistics who are not featured in the NYT or in Hollywood movies.

NB Ombudsman's Centre of Excellence is a Fantasy That Will Not Fill Residential Care and Treatment Needs of Severely Autistic Adults

2012-01-15T19:14:00.000-04:00

The Bricks and Mortar Office of the Ombudsman 548 York Street,

Fredericton,New Brunswick, at the Staying Connected consultations,
in which I participated, Ombudsman Bernard Richard and NBACL
President Clarence Box both dismissed Long Term Residential
Care and Treatment Facilities for Autistic Youth and Adults as "Bricks and
Mortar Solutions" The Centre of Excellence which the Ombudsman's
office has promoted so heavily is not an actual center, it is a
bureaucratic fantasy which will not provide a place to live and receive
treatment for severely autistic youth and adults.

As a former Autism Society New Brunswick representative I met with government officials on several occasions to stress the need for evidence based, secure, autism specific residential care and treatment facilities for New Brunswick adults with severe autism disorders. Invariably government officials in both Liberal and Conservative administrations have declared that they were studying the issue but they have never taken concrete action to establish a modern, decent, facility with autism trained staff or with access to ongoing autism treatment. I have on this site posted several times over the past 6 years about the lack of adult residential care and treatment facilities for autistic adults.

Still nothing happens. Part of the problem lies with government and part of the problem lies with the community living ideology which governs education, health and social development departments and institutions like the NB Human Rights Commission and the NB Ombudsman's Office under its various names. All of these institutions talk about providing care in the community and talk about temporary care for the more severely autistic in more institutional settings. But they have no grasp of the realities facing severely autistic adults, none whatsoever, and NB youth and adults with autism pay the price for their autism ignorance.

Since my last post and email on this subject CBC New Brunswick reported the situation of an 18 year old New Brunswick autistic man who checked himself out of Centracare in Saint John in winter weather wearing only a hospital johnny shirt:

"The family of an 18-year-old with autism, who's currently being housed at the Salvation Army hostel in Saint John, is calling on the province to do more to help people in his situation.

The young man, whom CBC News has chosen not to name, has mood swings and behavioural issues, including violent outbursts.

He has been unable to remain in a group home and last Sunday, he checked himself out of the long-term mental health facility Centracare, wearing only a Johnny shirt in the subzero temperatures."

This 18 year old autistic man unfortunately falls squarely in the middle of the gap that exists in New Brunswick between group homes and psychiatric hospital care. CBC News deserves some credit for reporting this story but in their report they asked for feedback from former Ombudsman Bernard Richard. Mr. Richard is a very courteous and gentlemanly career politician and bureaucrat but he is also a person who lacks any obvious understanding of the realities faced by youth and adults with severe autism disorders. In his comments on this Saint John "johnny shirt" incident Mr. Richard talked about the alleged "centre" recommended by the Complex Needs process which he oversaw:

""I've been generally encouraged," he told CBC on Wednesday."They are feeling that they need to do something and I am hopeful that they will."

In 2008, in his report called Connecting the Dots, Richard recommended a centre of excellence be dedicated to research and the provision of services to children with very complex needs, including the establishment of community-based residential capacity for them.

The centre was one of 48 recommendations in the report, which was a two-year undertaking and included a review of seven individual complaint files relating to youth with very complex needs.

Richard called for a centre of excellence again last year in report called Staying Connected, which he co-authored as co-chair of a task force on a centre of excellence for children and youth for complex needs.

"When a placement outside of the home is required for assessment or step-up intervention purposes, the centre of excellence will help ensure that clinicians, educators, social workers and all interveners work together and from the same page in meeting the child’s needs," the report said.

"The millions expended to date for step-up interventions abroad could benefit many more children if they were spent here in New Brunswick; those expenditures could develop expertise, services and employment in communities around our province."

The first point to note is that Mr. Richard is talking about children not older youths and adults. The second is that he is talking about community based residential capacity for these children. Mr. Richard's comments, to the extent that they are referring to autism disorders, do not demonstrate any understanding of the very serious, long term, and in some cases, permanent challenges facing many adults living with severe autism disorders. For such adults assessment is not an issue. Nor is a hospital in patient out patient model the answer. Many severely autistic adults need facilities in which to live permanently with autism trained staff and access to expert autism therapeutic and medical care on an ongoing basis.

I was involved with the Staying Connected review process and I spoke about the need for permanent residential care and treatment placement facilities with autism trained expert staff. My comments carried no weight with the Staying Connected process panel which was ideologically opposed to any attempt to establish centres. The Ombudsman's office has never been a strong advocate for autistic children and adults in New Brunswick. Positive improvement in early intervention and school services were obtained by committed parents fighting on behalf of their children. The Staying Connected consultations actively discouraged discussion of actual facilities, or "bricks and mortar" solutions for the serious challenges facing New Brunswick adults with complex needs including the very complex needs of severely autistic NB youth and adults.

Unfortunately, when it comes to adult autism care, the Ombudsman's office is not just an irrelevant bystander as it was for preschool and school autism services. It has become part of the opposition to providing decent modern and adequate residential care and treatment facilities.

The Ombudsman's office is not part of the solution when it comes to adult autism residential care and treatment in New Brunswick. As a bureaucracy closely tied to the community living leadership which has such great influence with New Brunswick governments, and which vigorously opposes residential care and treatment facilities for autistic adults, it is part of the problem, a very big part of the problem.

2011 Autism Progress or Back to the Future?

2012-01-14T09:30:00.000-04:00

Was there any progress in addressing autism disorder issues in 2011? In the humble opinion of this father of a severely autistic 16 year old there was very slight progress on the research front, very slight, and that progress was more than offset by the regression on other fronts particularly in the area of autism awareness.

The hard core reality is that in the six years since I began this blog and in the nearly 14 years since my son was diagnosed with autistic disorder no substantial progress has been made towards curing, treating or even understanding autism disorders. The displacement of the original more severely autistic population with very close links to intellectual disability by Aspergers diagnosed, in some cases self diagnosed, persons with very little, if any impairment in daily life functioning has confused the public, confounded autism research and taken the pressure off of autism service providers.

The severely autistic are still under represented in autism research which now searches Korea and the rest of the world for those who are so high functioning that they are not even noticed as having a disorder in highly structured, organized societies. Those who are barely autistic, if at all, still purport to speak on behalf of those on the spectrum who are severely affected by autism. Governments feel less and less pressure to provide services for those who most need them because autism has become autism fluffy and lite in the New York Times and other influential mainstream media outlets.

The original severely autistic remained invisible in 2011 and with the DSM5 removal of the intellectually disabled from the autism spectrum will be forgotten completely. Hidden out of sight in institutions, they are now out of the public mind completely which instead sees highly intelligent, highly functional "geek" populations, as representative of autism. Autism has become autism lite and fluffy. Autism dark and heavy remains hidden and forgotten.

For those seeking treatments and cures for autism, for the original, invisible, severely autistic population in 2011 it was just another year like those before, just more back to the future.

Autism, Obesity and Medication: Our Run, Jump, Fly Boy Says NO THANK YOU!

2012-01-10T06:35:00.003-04:00

Run, Jump, Fly Boy 2007

Run, Jump, Fly Boy 2011

There are many news reports concerning possible connections between obesity and medications prescribed for children and adults with autism and other developmental disorder. Those reports help stiffen our resolve to avoid medications for our autistic son Conor, our Run, Jump, Fly Boy.

In the article In Treating Disabled, Potent Drugs and Few Rules the NYT examined the psychotropic medications given with few guidelines to children with developmental disorders and the possible harmful effects, including obesity, anxiety and in some instances enlarged breasts in boys requiring surgery, that can result. The NYT article also quotes sources indicating that the medications do not treat the underlying conditions.

In Texas Johnson & Johnson is soon to go on trial in respect of its practices in marketing Risperdal a medication often prescribed for autistic children. The AP article Texas suit against J&J over drug to go to trial reports that Risperdal and similar antipsychotic drugs have been associated with increased risk of strokes and death in elderly dementia patients, seizures, major weight gain, onset of diabetes and potentially fatal high blood sugar.

A UK report Parents' tragedy as autistic son found dead in Haringey care home tells of parents' grief at learning that their 20 year old son, who had been placed in a group home 15 months earlier and during his time there had been prescribed chloropromazine, had died of an obesity linked heart attack after being found faced down in his room hours earlier:

"Coroner Dr Andrew Walker of Barnet Coroner’s Court ruled the 22-stone teenager’s death was due to a heart attack linked to obesity at an inquest on Wednesday last week (January 4). But Harry’s parents, Jennifer Horne-Roberts and Keith Roberts, claimed strong anti-psychotic drugs he was given without their knowledge were responsible. They claim his three stone weight gain during 15 months in care was due to the drug chloropromazine and that the boisterous 6t-teen was given the drugs without their knowledge.

Before he moved to the care home, Harry had been exuberant and regularly took part in sports and outings. His parents took the heartbreaking step to put Harry into care to increase his independence, but claimed during the inquest they were instead locked out of his treatment with catastrophic consequences. They only learned that he was on the drug when a carer let the information slip in March 2009 and then wrote four letters to Harry's psychiatrist without receiving a reply.

During the inquest psychiatrist Dr Sujeet Jaydeokar said: There was a breakdown of communications."

In our son's case, shortly after Conor was originally diagnosed his pediatrician, who has considerable expertise with children with autism disorders, recommended that we avoid medications for Conor ... as long as possible. So far we have avoided resort to medication even as Conor, soon to turn 16, and standing a solid 6'1" in height (as measured by hospital staff in a recent visit), continues on the sometimes challenging journey known as adolescence.

The first combined photo above is from 2007 and the next two are from 2011. Our son loves to run, jump and fly when we are out outdoors on our local trail systems (and sometimes indoors). As long as we can we will avoid any medication for Conor as his pediatrician recommended so many years ago. I do not want to see him lose the joy he obviously experiences when he decides to Run, Jump and Fly.

I don't want to take Conor's joy of movement from him and I don't want to see the physical and mental harm that appears to have been inflicted on some autistic children and adults by medications. I want our Run, Jump, Fly Boy to enjoy life and his love of movement, for as long as possible. So far we have not resorted to medication. We have instead adopted a behavioral management approach, as recommended sources in the NYT article. At school which he loves dearly, he works with a UNB-CEL Autism Intervention trained Education Assistant using the ABA principles recognized by several credible authorities. For now at least our Run Jump Fly Boy can continue to be who he is, and continue to enjoy his love of movement.

Joy of Conor 2011

2012-01-07T16:39:00.010-04:00

Just a tiny bit of the joy that Conor brought to his Mom and Dad every day in 2011.

A Place for Conor? New Brunswick and Its Community Cliché Addicted Bureaucracy Have Failed Severely Autistic Adults

2012-01-04T16:29:00.012-04:00

The Ombudsman and the community living bureaucracy in New Brunswick can Connect all The Dots and hold as many cheer leading sessions as they want but none of them have done anything to address the need for decent residential care and treatment facilities for severely autistic adults in New Brunswick.

When it comes to the need for modern properly staffed residential care and treatment for New Brunswick adults with severe autism disorders our community living cliché addicted government institutions have prevented all progress.

In 2011 Karissa Donkin, a journalism student at St. Thomas University met with me and Conor before addressing these issues head on in a well written piece of journalism: A Place for Conor. For me, and for my son Conor, this was the autism story of 2011. It asks a question I asked at a meeting of the Autism Society New Brunswick last year. It asks a question I have raised, with other parents of autistic children, in several meetings with New Brunswick government officials over the past 10 years. It is a question I have asked of the community living bureaucracy that has dominated the New Brunswick Human Rights Commission, the Ombudsman's Office and the Departments of Education, Health and Social Development. Last year I raised the issue of adult residential care and treatment during the Ombudsman's public consultations. I might as well have been singing to my self in the shower.

I participated in the center of excellence consultations organized by the Ombudsman's Office in connection with the Connect the Dots campaign. It was an orchestrated charade with the same cliches about "community" and "inclusion" and expressed hostility towards "bricks and mortar" centers that have prevented progress on evidence based autism issues for decades in New Brunswick. It was clear from the comments of those at the head table as well as NBACL head Clarence Box who moved to the table I was seated at that there would be no real centers considered during the consultations.

As we move forward in 2012, the need for a decent residential care and treatment system for NB adults with autism disorders remains as it has over the past decades. The past several decades have been dominated by a community living bureaucracy whose ideas were framed decades ago and which has not moved on to address the need for modern evidence based residential care and treatment needed by some people, including my 16 year old severely autistic son.

With no disrespect intended the fact remains that the community living bureaucracy, including the current occupant of the Ombudsman's office, doesn't have a clue about what is required to move severely autistic adults out of psychiatric hospital and general hospital ward care and into modern residential care and treatment facilities. They refuse to consider meaningfully any ideas which conflict with their tired community living ideology, an ideology which began around the time my childhood heroes Neil Armstrong and Buzz Aldrin walked on the moon. It is an ideology whose adherents have remained inflexible and dogmatic in their thinking. It is an ideology whose adherents have failed, despite years of the highest level of influence in our government institutions, to help the most severely disabled autistic adults.

New Brunswick has a need for autism specific residential care and treatment facility. Our province has answered the call in early intervention and to some extent in providing autism specific education services in our schools. It has been accomplished despite the determined opposition of those with a near religious belief in community living cliches. UNB-CEL Autism Intervention and the Stan Cassidy Centre in Fredericton have developed some excellent early and school years intervention services. We have natural living environments in the capital area. There is no excuse for not beginning a serious effort to construct a professional modern living centre for autistic adults in our capital region. None at all.

Karissa Donkin's article, A Place for Conor:

"A Place for Conor

What resources are available when you’re growing up with autism?

Fredericton’s Second Cup is loud and busy on a Tuesday afternoon and Conor doesn’t like it.

Conor is 15 years old and looks the part of a boy becoming a man. He’s nearly six-feet tall and growing sideburns. His blue eyes are staring out of the coffee shop’s window, where he’s watching a raging snowstorm blanket the downtown streets.

Every few minutes, when the noise gets to be too much to handle, Conor lets out a small scream and bats his ears with his hands.

The only person who can hold Conor’s attention is the man sitting across from him with the same blue eyes.

Since Conor was diagnosed as severely autistic and intellectually disabled 13 years ago, Harold Doherty has worked tirelessly to lobby the government to better support autistic children like his son. For the past five years, he’s operated a blog called Facing Autism in New Brunswick.

“There were no services here in New Brunswick … People had to stay active. There was a group of parents who did and I was one of them.”

But Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.

“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.

“On the other hand, I don’t want him dumped into one of the group homes they have.

“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”

***

Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism.

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.

But Barbour admits the province needs to do more to help autistic adults.

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said.

Not only is the current system not comprehensive enough for adults with varying degrees of autism, but it’s also expensive, says child psychologist and autism expert Dr. Paul McDonnell.

Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families, that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

***

Every school night before Conor goes to bed, he packs his lunch and puts it by the door.

Conor is in Grade 9 at Leo Hayes High School and loves getting up and going to school every day.

In elementary school, Conor used to come home with bite marks, a sign of frustration from being placed in a regular classroom. Now, Conor studies in a resource room at the high school.

A severely autistic teenager like Conor thrives on the structure of the school day and he struggles when he doesn’t have that structure.

“When school days are missed for different reasons, it’s challenging for him,” Doherty said.

Doherty worries about how to manage Conor’s behaviour when he’s finished with the public school system.

“It’s difficult as parents to give him the structure that he gets at school.”

Many members of the Autism Society of New Brunswick are parents who share similar worries. Doherty organized the society’s first meeting in two years in January.

The parents have been lobbying the government to reform autism services for years. They started out lobbying for services for the youngest kids and saw an autism intervention training program developed at the University of New Brunswick’s College of Extended Learning in 2004.

“We know that wasn’t going to help our children. My son never got the benefit of those (pre-school) services. But it was the right thing to do,” Doherty said.

The parents moved on to advocating for better services at the grade school level and have spent the last couple of years focusing on adult services.

“It’s tougher to get that same emotional response when you’re talking about adults.”

Many of those same parents got burnt out trying to manage careers, autism advocacy work and their families, Doherty said, and the society was disbanded for two years.

But with the clock ticking and Conor approaching adulthood, Doherty knew it would be necessary to have a society to communicate with government.

“Because we don’t look for compensation, we’re not in a conflict of interest. We can’t be pressured into representing our children to the fullest of our ability.

“That’s why we were able to keep pushing ahead when other people pulled back. We know how important it is.”

McDonnell, who has worked with parents to help them understand autism, knows how important it is for parents to be advocates.

“If you don’t (advocate), you simply won’t get the services.”

***

Six weeks ago, Conor had a meltdown in the middle of the night.

Around 2:30 a.m., Doherty woke up to find his son harming himself. Clearly frustrated, Conor was slapping himself in the face and head.

“I tried to talk him out of it and manage his behaviour and it didn’t work this time.

“I tried to grab his arms to restrain him from hurting himself … he lunged forward and gave a good bite on my bicep.”

This is a rare example of a time when communication broke down between Doherty and his son, making it hard for him to manage his son’s behaviour.

Doherty suspects Conor’s frustration that night came from not understanding the teenage changes going on in his body.

The incident serves as a reminder of Doherty’s race against the clock to ensure his son will be able to live his adult life with dignity.

While Doherty is worried about the future, he maintains he isn’t going anywhere soon. Spending time outdoors and running around with Conor, who has a lot of energy, is keeping him healthy and young in body and spirit.

“(Conor) has his frustrated moments but those are far outweighed by the moments he’s just happy and smiling a lot.”"

Study Confirms DSM-5 Autism Spectrum Disorder Excludes Low Functioning, Intellectually Disabled Autistics

2012-01-01T02:55:00.000-04:00

The abstract following is for the article Testing the Construct Validity of Proposed Criteria for DSM-5 Autism Spectrum Disorder, authors William P.L. Mandy, D.Clin.Psy., Tony Charman, Ph.D., David H. Skuse, M.D.Accepted 21 October 2011. published online 05 December 2011. The study participants were 708 children and young persons who had mild to severe autistic difficulties. The authors, as I have highlighted in bold in the abstract, concluded that the two-factor DSM-5 model for the New Autism Spectrum Disorder (three domains become two, APA, DSM-5, ASD Rationale) was superior to the three-factor DSM-IV-TR model.

The authors' conclusion that the DSM-5 was a superior autism model was expressly based on the conclusion that "Among higher-functioning individuals, ASD is a dyad, not a triad, with distinct social communication and repetitive behavior dimensions." No mention in the abstract conclusion is made of whether the same was true for lower-functioning autistic individuals who are not even mentioned in the conclusion.

It appears that, for the authors of this study, there is no need to consider whether the DSM-5 model is superior to the DSM-IV model for lower functioning autistic individuals, including the vast majority of the original classic autistics who suffered from intellectual disabilities. It seems reasonable to assume that the authors' nonchalance is based on the wording of the DSM-5 which expressly excludes the intellectually disabled from a diagnosis under the DSM-5's New Autism Spectrum Disorder. If the most low functioning autistics will no longer be included in the DSM-5 New Autism Spectrum Disorder why worry about current DSM-III and DSM-IV low functioning autistics?

In other words the authors know which way the wind is blowing in the DSM-5 2013, and beyond, world of autism. The DSM-5's New Autism Spectrum Disorder is for High Functioning Autism and Asperger's only. Low functioning, intellectually disabled autistics will be found under the Intellectual Developmental Disorders category of the DSM'5's brave new autism world. (ASD - Mandatory Criterion A)

"Objective

To use confirmatory factor analysis to test the construct validity of the proposed DSM-5 symptom model of autism spectrum disorder (ASD), in comparison to alternative models, including that described in DSM-IV-TR.

Method

Participants were 708 verbal children and young persons (mean age, 9.5 years) with mild to severe autistic difficulties. Autistic symptoms were measured using the Developmental, Dimensional and Diagnostic interview (3Di). The fit of the two-factor DSM-5 model, which has a social communication and a restricted, repetitive behavior (RRB) factor, was compared with that of alternative models. In one half of the sample, properties of the DSM-5 model were examined to investigate the validity of specific diagnostic criteria, informing the development of a better fitting DSM-5 model. This was then cross-validated in the remaining “hold-out” half of the sample; and its stability was tested across groups defined by age, sex, and symptom severity.

Results

The DSM-5 model was superior to the three-factor DSM-IV-TR model. It was improved by the removal of items measuring “play and imagination” and “stereotyped and repetitive use of language.” A scale measuring sensory abnormalities was added to the model, and loaded onto its RRB factor. This DSM-5 model fit well in the hold-out sample; was stable across age and sex; and fit adequately in those with clinical and sub-threshold autistic presentations.

Conclusions

Among higher-functioning individuals, ASD is a dyad, not a triad, with distinct social communication and repetitive behavior dimensions. As suggested in the proposed DSM-5 criteria, sensory abnormalities are part of the RRB symptom cluster." [bold emphasis added - HLD]

Asperger's Spectrum Disorder in the DSM-5: Why the Concealment?

2011-12-30T04:32:00.000-04:00

One of the great DSM-5 puzzles to this father of a severely autistic son is the use of the label Autism Spectrum Disorder to describe what appears to be little more than a tweaked version of the DSM-IV's Asperger's Disorder. The APA's DSM-5 team has replaced Autism with Aspergers, removed the most seriously intellectually disabled to the General Developmental Disorder category and further diluted the requirements for an autism diagnosis. Why not be open and transparent about the Aspergers substitution for Autism and the removal of the intellectually disabled from the Autism category?

The APA has purportedly merged the three Pervasive Developmental Disorders into one Autism Spectrum Disorder. It would appear to be much more accurate though to refer to the new combined disorder as Asperger's Spectrum Disorder. There is no signficant difference between the DSM-IV Aspergers Disorder and the DSM-5 Autism Spectrum Disorder. The DSM-5 converts autism into Asperger's by:

1) Collapsing three requirements for an autistic disorder into two for the DSM-5's new "Autism" Spectrum Disorder. The two categories are the two main requirements for a DSM-IV Asperger's Disorder diagnosis: qualitative impairment in social interaction and restrictive, repetitive and stereotyped patterns of behavior, interests and activities. The spoken language deficits of the DSM-IV'S communication category are subsumed under social communication eliminating spoken language impairment in itself as a diagnostic feature of autism.

2) Precluding an Autism Spectrum Diagnosis for persons with Intellectual Disabilities. Mandatory Criterion A in the DSM-5's brave new Autism Spectrum Disorder which precludes an ASD diagnosis where accounted for by "general developmental delays" which is the DSM-5 diagnostic terminology for Intellectual Disability. Mandatory Criterion A's.

The Asperger's Spectrum Disorder masquerading as Autism Spectrum Disorder will accomplish three things:

1) It will further impair "autism" research. The 1994 DSM-IV autism changes are still being used to explain dramatic increases in autism diagnoses. The 2013 DSM-5 changes could permanently impair our understanding of autism causes and increases. This will prevent any serious epidemiological based research into possible environmental causes including substances, air, drugs, diet and water supplies, vaccines and vaccine ingredients, affecting the pre-natal environment.

2) It could reduce public service costs for children with autism disorders by removing the most challenging cases of autism disorders: very low functioning intellectually disabled autistic children. The possible expansion on the other end of the Asperger's Spectrum may offset this reduction or may be affected by more serious emphasis on impairment of daily functioning levels in the DSM-5 era.

3) Legitimization of claims by very high functioning persons with current autism disorder and Asperger's diagnoses to speak on behalf of those most severely affected by autism. The Neurodiversity movement is based for the most part on persons from this group and tends to be very supportive of efforts to resist any serious environmental focused autism research including vaccine autism research.

The DSM-5 debates currently raging, spearheaded by Dr. Allen Frances, will have no impact on the Asperger's (Autism) Spectrum Disorder category in the DSM-5. It is a fait accompli. Current autism research tends to exclude, for matters of convenience of the researchers involved, use of severely autistic study participants. The mainstream media reports serious tragic incidents involving the severely autistic but its features invariably focus on high functioning autistic\Asperger's\savant success stories.

When looking at challenges the mainstream media tends at most to look at the social awkwardness of those with HFA\Asperger's. The recent Amy Harmon NYT "navigating love" feature is the perfect example of this aspect of MSM representation of autism.

Asperger's Spectrum Disorder is already with us; having unofficially taken over the Autism label. Why the APA feels the need to officially hide that fact in the DSM-5 is puzzling.

FOX News Autism Experts Worry About DSM5 Impact on High Functioning Autistic Children, No Concern for Low Functioning Autistic Children

2011-12-28T21:36:00.003-04:00

FOX News has published a report, Some Experts Worried Over Revised Autism Guidelines, in which two autism experts, Dr. Keith Ablow, a psychiatrist and Fox News contributor, and Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital, express their concerns about the possible impact of the DSM-5`s new Autism Spectrum Disorder category on high functioning autistic children. They are concerned that some high functioning autistic children might lose their diagnoses, and access to autism specific education services, although the FOX report does not provide much detail on the basis for their concerns:

“These new guidelines would place an emphasis on preservative and repetitive behaviors – but many children who were originally diagnosed with autism may be reclassified. Ablow said this can leave some people who are still suffering with some of the symptoms or less severe symptoms out in the cold. “If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier.”

There is no mention however of the possible negative impact on low functioning autistic children, those with intellectual disabilities who might be excluded by the DSM5 Autism Spectrum Disorder mandatory criterion A which excludes an autism diagnosis where a person is also intellectually disabled:

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:.....`

Like so many autism experts and professionals the FOX experts are concerned about high functioning autistic persons but not about low functioning autistic persons who remain the invisible autistics abandoned by health care professionals and the mainstream media alike.

Vaccines and Pregnancy: Lack of randomized, placebo-controlled trials and ... means ...?

2011-12-27T22:09:00.000-04:00

My children have received their recommended vaccinations. I have had some although I am old enough that I received my measles and mumps shots the old fashioned way ... I had bad cases of both mumps and measles as a child. I have not ... as yet ... attributed my son's autistic disorder to any injections he received, or that his mother received while carrying him, although I keep an open mind on the subject. I refuse to simply accept either camp's dogmatic conclusions.

I believe that the public health authorities have shot themselves, no pun intended, in the foot with their dogmatic assertions that vaccines have "debunked" any vaccine autism connection and with their condescending, and at times pejorative and nasty, dismissal of parental observation, also known as direct, first hand observation, of changes in their children's conditions immediately following vaccinations.

As one who has advocated strenuously for evidence based ABA treatment for autistic children I marvel at the ease with which some in the health sciences still do not accept ABA as an effective autism intervention after decades and hundreds of studies yet turn around and claim that a couple of dozen studies debunk all possible vaccine and vaccine ingredients even those given to pregnant women as possible causes or triggers of autism disorders. I am amazed that some of the same people who claim that we can not know whether autism increases are real because of changed diagnostic definitions and social factors turn around and claim that epidemiological studies which fail to find a vaccine autism connection in some circumstances proves for all time that all possible vaccine autism connections have been dis-proven while ignoring for those purposes the changed diagnostic definitions and social awareness factors that complicated drawing safe conclusions.

Then there is the occasional study which does not seem to receive the usual attention of the NYT, the LAT or CNN perhaps because they are not so dogmatic in the debunking claims. The following abstract does not specifically mention autism disorders, (it might not get published if it did) but makes some interesting observations relative to the vaccine autism wars:

Safety of Hepatitis B, Pneumococcal Polysaccharide and Meningococcal Polysaccharide Vaccines in Pregnancy: A Systematic Review

Authors: Makris, Marinos C.; Polyzos, Konstantinos A.; Mavros, Michael N.; Athanasiou, Stavros; Rafailidis, Petros I.; Falagas, Matthew E.

Source: Drug Safety, Volume 35, Number 1, 1 January 2012 , pp. 1-14(14)

Abstract:

Immunization during pregnancy has the potential to protect the mother and the newborn from preventable diseases. Current recommendations suggest that inactivated vaccines might be considered during pregnancy when the benefits outweigh the risks.

In this review, we aimed to evaluate the safety of hepatitis B (HB) vaccine, pneumococcal polysaccharide vaccine (PPSV) and meningococcal polysaccharide vaccine (MPSV) administration during pregnancy by systematically reviewing the available evidence in PubMed and Scopus databases, as well as postmarketing surveillance data (including the Vaccine Adverse Event Reporting System [VAERS] database). A total of 18 studies were eligible for inclusion in the review. Six studies provided data on HB vaccine, six on PPSV and three on MPSV; three additional studies compared PPSV with MPSV. Additionally, 91 reports on vaccinations of pregnant women were identified from postmarketing surveillance data (88 on HB vaccine, 2 on PPSV, 1 on MPSV). The most common complaints were local reactions, including tenderness and swelling. Overall, immunization during pregnancy did not seem to be associated with a teratogenic effect on the fetus, preterm labour or spontaneous abortion. However, the lack of randomized, placebo-controlled trials, or even large cohort studies, in addition to the inherent limitations of the reviewed observational studies with small statistical power, precluded safe conclusions. Large, prospective, population-based cohort studies are needed to elucidate this issue. (bold emphasis added -HLD)

The bold highlighted text states clearly that, at least for the vaccines listed in the study report title safe conclusions could not be drawn about the safety of those vaccines when given to pregnant women ... because of the lack of randomized, placebo-controlled trials, or even large cohort studies, in addition to the inherent limitations of the reviewed observational studies with small statistical power.

Autism Fluffy and Lite With Amy Harmon and The New York Times

2011-12-26T20:55:00.003-04:00

Amy Harmon and the New York Times like their autism fluffy and lite,

none of that yucky severe autistic disorder stuff

You wouldn't know it from reading NY Times columnist Amy Harmon, or from reading the NYT generally, but 70% of persons with Autistic Disorder suffer from intellectual disability. Approximately 30% of persons with Autistic disorder also suffer from epilepsy. There are regular reports, in non NYT papers anyways, about autistic children and adults going missing, sometimes never to safely return. Self injury is a serious problem for many. For many others lives spent in institutional care is the reality they endure or face in the near future. As an autism advocate in New Brunswick Canada I have seen these realities for myself. But I am not a columnist for the New York Times which has never had a good record on dealing straight up and honestly with autism disorders.

As with the current series run by Amy Harmon (1, 2) the New York Times prefers to report on and portray autism as high functioning autism and Aspergers. They prefer stories about autistic artists and John Elder Robison's son Jack and his difficulties with personal intimacy, difficulties faced by most adolescents, whether they are autistic, or whether they are neurotypical, to use the Neurodiversity terminology that dominates NYT autism articles.

Amy Harmon and the NYT discriminate by omission against the original, severely autistic "autistics". They like their autism sweet, fluffy and lite. No severe autism reality at the NYT thank you.

Autism Reality NB's 2011 Christmas Wish for Autism's Vast Majority

2011-12-26T09:50:00.000-04:00

Conor Doherty, one of Autism's Vast Majority of Invisible Autistics,

brings joy to Mom and Dad in the Christmas season and throughout the Year.

My 2011 Christmas wish is that Autism's vast majority, the 70-80% with autistic disorder and intellectual disabilities, will lose their status as autism's invisible autistics. It is a wish that will grow farther from fulfillment as the American Psychiatric Association stands poised to obliterate the original autistics and replace them in the DSM5 with its Aspergers Spectrum Disorder hidden under the label Autism Spectrum Disorder. It is a big wish and one which will not be easily fulfilled but I will continue to do my best as the father of an autistic 16 year old son with intellectual disabilities and behavioral challenges to fulfill that wish.

The world knows very well the high functioning adults with autism disorders, some of whom were only diagnosed with "autism" disorders as adults, some of whom have an Asperger's diagnosis, some of whom relish their autism label but object to being characterized as having a mental disorder or ever a medical disorder. The barely autistics are studied with fMRI scans, they are featured in fashion spreads in New York magazines, they are given seats in important government organizations like the IACC, and important autism charities like Autism Speaks, they presume the right to speak on behalf of the severely autistic, the vast majority with intellectual disabilities who will live their lives dependent on the care of others, many in institutional facilities with no significant continuing education or recreational opportunities.

I wish Autism's Vast Majority of Invisible Autistics the right to be seen, the right to have their existence acknowledged, without shame, without prejudice and without those who do not know them or their challenges speaking on their behalf. This Christmas season I wish my son Conor and all other invisible members of Autism's vast majority happy, healthy lives.

2011 Autism Research Game Changer: California Autism Twins Study (CATS) And Gene Environment Interaction

2011-12-21T01:22:00.005-04:00

Joachim Hallmayer MD, Stanford University

Following is the press release I received setting out what Autism Speaks considers to be the top 10 autism research achievements of 2011. Personally I do not think every one of these projects should be on a list of top 10 autism research achievements but this is the Autism Speaks list and I reprint it in its entirety here without any editing by this humble autism dad. I have added some bold highlighting to emphasize what I feel is truly the most significant achievement the California Autism Twins Study (CATS) ... a large study providing further confirmation that autism causation results from gene environment interaction.

As the Autism Speaks press release indicates the CATS study is a game changer in our common understanding of what causes autism. This study has further hastened the demise of the "it's gotta be genetic" mindset, the belief that autism is an entirely genetic disorder, that has dominated public understanding of autism causes, dominated autism research funding and hindered discovery of environmental, particularly prenatal environmental triggers of autism disorders.

The "it's gotta be genetic" mindset will still live on in the largely autism ignorant, advertising revenue dependent, major mainstream media institutions in LA, New York and Toronto but in the informed autism world it is being replaced by the gene environment autism research paradigm.

AUTISM SPEAKS TOP 10 AUTISM RESEARCH ACHIEVEMENTS OF 2011

Leading Autism Advocacy Organization Documents Progress to Discover Causes and Treatments for Autism Spectrum Disorders

NEW YORK, N.Y. (December 20, 2011) – Autism Speaks, the world's largest autism science and advocacy organization, has released its annual list of the 10 most significant science achievements to have impacted autism during the previous year. Every year, Autism Speaks documents the progress made toward its mission to discover the causes and treatment for autism spectrum disorders (ASD), and identifies the Top 10 autism Research Achievements of the year. Autism Speaks’ Top Ten list includes discoveries on how frequently autism recurs in families and the extent to which “environmental,” or non-genetic, influences, increase the risk of autism in those who are genetically predisposed to this developmental disorder. These important results continue to shape the future of autism research for 2012 and beyond.

“Not only has the research community continued to make significant progress towards effective treatments, 2011 offered some game-changing discoveries which help us understand underlying causes of ASD,” explained Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “Some of these discoveries will have direct and immediate impact on quality of life of people with autism.”

The 2011 list reflects the exponential rate of discovery in autism research, supported by the joint commitment of government health agencies and private organizations such as Autism Speaks in supporting this vital work.

“The recent reauthorization of the Combating Autism Act was critical to ensuring a continued federal commitment to supporting autism research and services that will improve our understanding of autism and help people with autism lead productive and fulfilling lives,” stated Autism Speaks President Mark Roithmayr. “I applaud the thousands of families nationwide who joined Autism Speaks Walks as well as our many corporate sponsors whose support and funding are enabling us to move forward,” Roithmayr added. “Working together – families, scientists, professionals, government officials – we are making progress through science and advocacy.”

With input from Autism Speaks' Scientific Advisory Committee (SAC), Autism Speaks science staff culled through thousands of publications to arrive at these choices. “These outstanding scientific advances are changing the way we think about autism and its causes,” said SAC member Gary Goldstein, M.D., president and chief executive officer of the Kennedy Krieger Institute. “From the game-changing twin study to the emerging clues on environmental risk factors, these studies highlight the important role of gene-environmental interactions in autism.”

This year’s highlights also reflect discoveries which advance translational research – the science of designing drugs to address core symptoms of autism. Research in 2011 also delivered evidence that may yield immediate benefits, that adequate folic acid around the time of conception may lower autism risk, and the validation of a method for screening at one year that may enable earlier intervention to improve children’s outcomes. An international study from South Korea not only found a much higher prevalence of ASD in schoolchildren by using a community screening method – 1 in 38 – – but provides evidence that community screening elsewhere may yield much higher prevalence rates than would be found in standard surveys of medical records.

It’s More than Just Genes Early environment shared by twins contributes to autism risk

For years, scientists have been following twins to help determine the contributions of genetic and non-genetic factors in the development of autism. But until this year, only three small autism twin studies, with just 66 twin pairs total, had been completed. Together they suggested that autism’s development stemmed almost entirely from inherited genes.

When one identical twin developed an autism spectrum disorder (ASD), these studies suggested, the chances were 9 out of 10 that the other twin would do so as well. Identical twins (who arise from the same fertilized egg) share 100 percent of their genes. By contrast, the studies found little or no autism overlap, or “concordance,” between fraternal twins. Fraternal twins arise from different eggs fertilized at the same time and, as a consequence, share about 50 percent of their genes.

Then came the game changer: In July we learned the results of the largest study to directly assess twins with autism (192 twin pairs). It revealed a significantly lower autism concordance between identical twins – just 70 percent. Even more surprising, the researchers discovered a much higher than expected overlap between fraternal twins – around 35 percent. That’s considerably more than the overlap seen among different-age siblings, which numerous studies have shown to be lower than 15 percent.

The conclusion: In the presence of an underlying genetic predisposition, the environment shared by twins – but not different age siblings – appears to significantly affect the risk that a baby will develop autism. In particular, this suggests that autism’s non-genetic, or “environmental,” risk factors involve the environment of the womb – from conception through birth. Further research is needed to pinpoint the nature of these influences and how they affect early brain development.

The large sample size of the study, led by Joachim Hallmayer, M.D., of Stanford University School of Medicine, was made possible by Autism Speaks Autism Genetic Resource Exchange (AGRE) and its volunteer families. The study was also co-funded by Autism Speaks and the National Institute of Mental Health.

Hallmayer J, Cleveland S, Torres A, et al. Genetic heritability and shared environmental factors among twin pairs with autism. Arch Gen Psychiatry. 2011;68(11):1095-102 [Jul 4 Epub ahead of print].

Population Screening Reveals Dramatically Higher Autism RatesSouth Korean study suggests many missed diagnoses in general population

A South Korean study that directly screened schoolchildren for autism spectrum disorder (ASD) revealed a prevalence of 1 in 38 children, or 2.6 percent. Two-thirds of the affected children were in mainstream classrooms, previously undiagnosed and receiving no services.

The finding, published in the American Journal of Psychiatry, raises the possibility that the current CDC estimate of autism prevalence in the United States (1 in 110 children, or about 1 percent) may be a considerable underestimate. The U.S. estimate is based on reviews of medical records, rather than the Korean study’s method of direct screening and case confirmation of children in the general community.

The South Korean study covered a wide-ranging population and used gold standard screening and diagnostic tools. Led by Young Shin Kim, M.D., Ph.D., of Yale School of Medicine, it was the first to attempt a rigorous estimate of autism prevalence in the general South Korean population and among the first such prevalence survey outside North America and Europe. It included about 55,000 schoolchildren between the ages of 7 and 12 living in a residential community near the capital city of Seoul. The researchers first screened for autism using parent and teacher questionnaires, then used standardized diagnostic methods to evaluate the children who screened positive.

The findings stress the need for improved and wider autism screening among the general population, the researchers concluded, especially among younger age groups, as early diagnosis and intervention have been shown to improve outcomes. Goyang City, where the study was conducted, now offers autism assessment and intervention services for all children entering first grade.

The study was funded in part by Autism Speaks, which is now working with the CDC to implement a study of community screening in the United States. Even at the current estimate of ASD affecting 1 in 110 US children, more children will be diagnosed with autism in the coming year than with childhood cancer, juvenile diabetes and pediatric AIDS combined.

Kim YS, Leventhal BL, Koh YJ, et al. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. 2011 Sep;168(9):904-12.

Baby Siblings at RiskAutism recurs in families more often than previously thought; underscores importance of early screening

Many parents of children with autism want to know the likelihood of having another child on the spectrum. Knowing that younger siblings are at high risk can promote earlier screening, diagnosis and therapy, which may improve outcomes.

This year brought clearer guidance with the largest study of infants with one or more older siblings on the autism spectrum. It found that these younger siblings have close to a 1 in 5 chance (20 percent) of developing an autism spectrum disorder (ASD). This is considerably higher than previous estimates of 3 percent to 10 percent, based on much smaller studies that used various methods of ASD diagnosis.

The researchers also found a higher rate of autism among baby brothers (about 1 in 4, or 25 percent) than among baby sisters (about 1 in 9, or 11 percent). For infants with more than one sibling on the autism spectrum, the risk of developing ASD was even higher – about 1 in 3.

The study, led by Sally Ozonoff, Ph.D., University of California, Davis, MIND Institute, assessed 664 infants, all of whom had at least one older sibling with a verified diagnosis of ASD. They didnot find a link between autism risk and the severity of symptoms in the older sibling. Nor did they find an effect on risk from other family characteristics such as parental age or education, ethnicity or birth order, or an older sibling’s gender or IQ.

The researchers enrolled infants very early (two-thirds of them before 6 months) before symptoms of autism become obvious. The clinicians then followed the babies through 36 months of age. They used gold standard diagnostic methods and comprehensive assessments performed by expert clinicians.

The findings highlight the need for close monitoring and screening of infants with an older sibling on the autism spectrum, Ozonoff says. Identifying early signs of autism can help clinicians and families take advantage of intervention strategies that can improve outcomes.

The study’s researchers are members of Autism Speaks Baby Siblings Research Consortium, an international network that coordinates studies and pools data from affected families in 21 sites in the U.S., Canada, Israel and the UK. Autism Speaks also funded the study’s cross-site analyses through a grant to co-author Gregory S. Young Ph.D., also of the University of California, Davis.

Ozonoff S, Young GS, Carter A, et al. Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study.Pediatrics. 2011; 128 (3) e488-95

De Novo Genetic Changes Provide New Clues for Autism

Four studies show spontaneous mutations in DNA may contribute substantially to autism occurrence

This year, four separate studies shed new light and confirmed earlier findings that in some – perhaps many – cases, genetic mutations associated with autism arise in an egg or sperm or very early in embryonic development. As such, they are not present in the genetic makeup of either parent. Together, the four studies identify hundreds of places in the human genome where spontaneous, or “de novo,” mutations could increase the risk of ASD, possibly by altering early brain development.

Though rare, de novo mutations may contribute to the development of autism in a substantial number of families with just one child on the spectrum, the researchers agreed. Some went further, noting that de novo mutations might explain why advanced parental age at the time of conception appears to increase the risk that a child will develop an autism spectrum disorder (ASD). Other studies have suggested that de novo genetic mutations in eggs and sperm become more common with age.

In addition to emphasizing the diversity of genetic contributions to ASD, these studies set the groundwork for finding new candidate genes and gene networks and for the potential development of treatments specific to certain subtypes of autism.

In years past, most autism gene research focused on inherited mutations – present in one or both parents. Increasingly, however, researchers are looking at de novo variations in genes involved in the formation and function of brain cell networks. The four new studies strongly suggest that this new focus is the right direction and offer further clues on the particular areas of the genome that should be targeted by future investigation. The findings were made possible, in part, by technological advances that enabled a shift from looking at large mutations to very small DNA changes.

The three largest studies, published simultaneously in the journal Neuron, analyzed DNA samples from children and parents in the Simons Simplex Collection, a newly assembled repository of over 1,000 U.S. and Canadian families with only one child on the autism spectrum. Using DNA chip, or microarray, technology, the researchers scanned for genetic mutations known as copy number variants (CNVs). CNVs can range from tiny deletions in the genetic code to extra copies of a large DNA sequence.

Among other findings, their results confirmed previous smaller studies that found higher rates of spontaneous CNVs in children with ASD than in their non-affected siblings. The researchers also found that many of these non-inherited mutations affect genes or gene networks involved in brain development and have been implicated in past studies of autism and other mental disorders.

For example, they found a strong link between autism and CNVs in a region of the genome associated with Williams-Beuren syndrome, a developmental disorder marked by extreme sociability. While people with Williams-Buren syndrome are missing copies of DNA in this region, some people with autism have extra copies.

Overall, the researchers estimate there may be several hundred locations on the human genome where de novo mutations could increase the risk of ASD, further highlighting the complexity and variety of autism’s causes.

The fourth study looked for spontaneous mutations in 20 people with autism. This study likewise used DNA from the Simons Simplex Collection, but rather than test broadly for CNVs, the researchers used a genetic sequencing technology that targets only the protein-coding parts of the genome. The researchers found four spontaneous gene mutations that likely play a causal role in the development of autism. The researchers also noted that the four participants who carried these genetic mutations had particularly severe core symptoms of autism – suggesting that these particular genes warrant further investigation and may be associated with promising treatment targets.

Together, the four studies are the first set of experiments to offer a detailed genetic analysis of the Simons Simplex Collection, one of the largest databases focusing on families with only one child on the autism spectrum. This collection uniquely complements other large autism databases such as Autism Speaks’ Autism Genetic Resource Exchange (AGRE), which focuses on families with more than one child on the spectrum.

Gilman SR, Iossifov I, Levy D, et al. Rare de novo variants associated with autism implicate a large functional network of genes involved in formation and function of synapses. Neuron. 2011 Jun 9;70(5):898-907.

Levy D, Ronemus M, Yamrom B, et al. Rare de novo and transmitted copy-number variation in autistic spectrum disorders. Neuron. 2011 Jun 9;70(5):886-97.

O'Roak BJ, Deriziotis P, Lee C, et al. Exome sequencing in sporadic autism spectrum disorders identified severe de novo mutations. Nat Genet. 2011 Jun;43(6):585-9. [Epub 2011 May 15.]

Sanders SJ, Ercan-Sencicek AG, Hus V, et al. Multiple recurrent de novo CNVs, including duplications of the 7q11.23 Williams syndrome region, are strongly associated with autism. Neuron. June 9, 2011;70(5):863-85.

Different Forms of Autism Share Striking Brain Similarities
Atypical patterns of brain gene expression appear to be shared by those across the autism spectrum

As its name suggests, autism spectrum disorder (ASD) is known for its broad range, or spectrum, of outcomes – from profoundly disabled to highly but “differently” functional. Recent years have likewise revealed a diversity of genes that predispose to the development of ASD.

But this year, scientists discovered a remarkable consistency in the molecular changes occurring in the brains of those with ASD, across a range of autism subtypes. The study found two interconnected gene networks abnormally expressed in the brains of affected persons. The results suggest that diverse types of autism may share a similar biological basis.

Published in Nature, the study analyzed postmortem brain tissue donated to Autism Speaks Autism Tissue Program and was led by neurologist-geneticist Daniel Geschwind, M.D., Ph.D., of the University of California, Los Angeles, and Irina Voineagu, now at the Riken Brain Science Institute in Japan.

The team discovered that, within brains affected by autism, genes involved in cell function tended to be expressed at abnormally low levels, while genes associated with the generation of certain immune cells were expressed at higher than normal levels. Many of these genes are first turned on during embryonic development, they noted, suggesting that the abnormal development of brains affected by autism may begin very early.

In addition, the researchers looked closely at gene expression in the frontal cortex, the part of the brain that controls higher-level thinking, and in the temporal cortex, which controls sensory integration. In brains not affected by autism, the researchers found stark difference in gene expression between the two regions – as would be expected by their different functions. By contrast, these differences in frontal versus temporal lobe gene expression all but disappeared in those affected by autism. The results suggest a blurring of key differences during prenatal brain development. Such findings offer clues to both the causes of autism and guidance for developing medicines that might target autism’s disabling symptoms.

Voineagu I, Wang X, Johnston P, et al. Transcriptomic analysis of autistic brain reveals convergent molecular pathology. Nature. 2011 May 25;474(7351):380-4.

Prenatal Vitamins Before and After Conception May Decrease Autism Risk Study bolsters idea that low folic acid may increase risk in those with genetic vulnerabilities

This year brought evidence that taking prenatal vitamins during the months before and after conception may lower the risk of having a child with autism spectrum disorder (ASD) – at least if the mother or child carries certain genes that increase susceptibility to autism. The study appeared in the July issue of the journal Epidemiology.

The findings are the first to suggest a practical step women can take to reduce the risk of autism in their children. However, the results were based on interviews with fewer than 500 women and, so, need to be confirmed by the outcome of a larger study.

The study, led by Rebecca J. Schmidt, Ph.D., at University of California, Davis, is part of the larger CHARGE (Childhood Autism Risks from Genetics and the Environment) project, which continues to enroll families – both those affected by autism and those that are not. The aim of the project is to increase understanding of the causes and contributing factors that lead to ASD.

Schmidt and her colleagues based their findings on 288 children with autism and 278 children without autism, all between ages 2 to 5. After confirming autism diagnoses, they interviewed the mothers about their vitamin intake (prenatal vitamins, multivitamins, other supplements and fortified cereals) before conception, during pregnancy and while breast-feeding. The mothers who took prenatal vitamins the three months before conception and at least one month after conception were, on average, about half as likely to have a child with autism compared to mothers who did not take prenatal vitamins during this period.

Taking standard multivitamins or eating vitamin-fortified cereals did not affect autism risk. Prenatal vitamins typically contain more iron, folic acid and other B vitamins than do standard multivitamins. For years, physicians have encouraged women to take prenatal vitamins with folic acid because its use during early pregnancy reduces the risk that a baby will be born with neural tube defects, another disorder of brain development.

The researchers also analyzed DNA of the mothers and children. Women who had either one of two gene variants associated with folate regulation had double to five times the risk of having a child with autism – but only if the mother did not take prenatal vitamins around the time of conception. Children who had one of these gene variants had seven times the normal risk of developing autism if the mother did not take prenatal vitamins around conception, but just two times the normal risk if she did take them.

A deeper understanding of these gene-environment interactions may lead to improved methods for the prevention and/or treatment of autism, the researchers note. They also call for more research on the effect of other aspects of maternal nutrition and other potential environmental risk factors on crucial periods of prenatal brain development.

The ongoing CHARGE study receives funding from the National Institute of Environmental Health Sciences, the U.S. Environmental Protection Agency, UC-Davis’s MIND Institute and Autism Speaks.

Schmidt RJ, Hansen RL, Hartiala J, et al. Prenatal vitamins, one-carbon metabolism gene variants, and risk for autism. Epidemiology. July 2011;22(4):476-85.

Gene Knockout Mouse May Offer Leap Forward in Autism Animal ModelsNew mouse model exhibits all core autism traits; may offer advantages for testing helpful medicines

This September, scientists at University of California, Los Angeles debuted a new mouse that may represent a more useful animal model for studying autism spectrum disorder (ASD) and testing potential treatments. The mouse shows more behavioral and biological similarities to people with ASD than do most previous mouse models. It also responds to a drug (risperidone) already approved for treating some symptoms of ASD. This suggests that the mice may be particularly suited for testing promising new medicines aimed at relieving autism’s most disabling symptoms.

The strain, first created in 2003, lacks a gene dubbed CNTNAP2, or “cat nap two.” The gene plays a role in brain development. In people, rare inherited mutations in CNTNAP2 can cause a genetic syndrome known as cortical dysplasia-focal epilepsy, whose symptoms can include seizures, loss of language and hyperactivity. Nearly two-thirds of those affected by this rare disorder are also diagnosed with ASD. Daniel Geschwind, M.D., Ph.D., and colleagues at UCLA crossed this mouse strain with another known for its easily observed repertoire of behaviors. He then tested the new hybrids for autism-like traits.

For years, scientists have been genetically engineering mouse models of autism by deleting, or “knocking out,” the mouse versions of genes associated with autism in humans. While most previous mouse models showed only one or two core symptoms of autism, the new cat-nap model shows all three: hampered communication difficulties, social challenges and repetitive behaviors. The mice groom themselves excessively, have difficulty adapting to new situations and also vocalize and play less than do typical mice. In addition, brain studies reveal that the mice exhibit atypical patterns of brain activity and connectivity that are similar to those seen in many people with ASD.

As mentioned, the researchers gave their knockout mice risperidone. The drug is FDA approved to treat ASD-associated “irritability,” which can be accompanied by self-injury, tantrums and aggression. In the mice, the drug significantly reduced repetitive behaviors.

Penagarikano O, Abrahams BS,Herman EI, et al. Absence of CNTNAP2 Leads to Epilepsy, Neuronal Migration Abnormalities, and Core Autism-Related Deficits Cell. 2011 Sept 30 ;147:235–46.

Tweaking Electrical Activity in the Brain Impairs and Restores Mouse Social Behaviors

Researchers pioneer technique to test how changes in brain activity may produce autism symptoms

Researchers altered the social behavior of mice by using light to manipulate electrical activity in a brain region involved in learning and socializing. The study, published this fall in Nature, bolsters the theory that autism may stem from an imbalance in the natural signals that excite or dampen activity within the brain. The study also offers a new approach to creating animal models of autism – crucial for testing promising medicines that might relieve disabling symptoms.

Using a technique he pioneered and dubbed “optogenetics,” Stanford University psychiatrist Karl Deisseroth, M.D., Ph.D., and his colleagues engineered mice to produce light-sensitive proteins in the prefrontal cortex – a region involved in learning and social behavior. In a typical brain, some cells send signals that excite brain activity while other cells send signals that quiet it. In the optogenetic mice, excitatory brain cells respond to blue light and inhibitory brain cells respond to yellow light.

As a result, the researchers could dial up or dial down the level of activity in a mouse’s prefrontal cortex with pulses of light sent through a fiber optic cable implanted in its brain. The light’s effect lasted up to a half hour, enabling the researchers to remove the visible portion of the fiber optic implant and observe how the mice interacted with new mice or objects placed in their enclosures.

When the mice were exposed to blue light alone, they abruptly lost interest in socializing with new mice. By contrast, typical mice readily approach and sniff newcomers. However, the blue-light stimulated mice did not display other deficits such as difficulty adjusting to new objects placed in their cages.

When both excitatory and inhibitory cells were turned on simultaneously (by exposure to blue andyellow light), the mice resumed typical social behaviors.

The findings support a theory that autism stems from a dysregulation of normal brain signaling. Other evidence supporting this idea includes the fact that about one-third of those with autism also suffer seizures, a result of excessive electrical activity in the brain. In addition, several of the altered genes associated with autism play a role in brain signaling. Also, brain imaging studies reveal that some people affected by autism show higher than normal activity in brain regions associated with social behavior.

This latest experimental evidence further suggests that restoring balance to brain activity may be a way to relieve some of autism’s core symptoms. It also provides groundwork for future research investigating the role that specific brain circuits play in autism. Deisseroth and his colleagues are already developing new mouse models that will allow scientists to manipulate the activity of other brain regions and circuits, promising a more precise picture of how brain signaling problems might give rise to autism’s core symptoms.

Yizhar O, Fenno LE, Prigge M, et al. Neocortical excitation/inhibition balance in information processing and social dysfunction. Nature. 2011 Jul 27;477(7363):171-8.

More Evidence Linking Immune System to Some Forms of Autism
Children with regressive forms of autism show greatest signs of ongoing inflammation

In January, researchers at the University of California, Davis, reported evidence that many children with autism spectrum disorder (ASD) have signs of ongoing inflammation. They found levels of inflammatory markers called cytokines to be higher in children with autism than in those who did not have the disorder. Further analysis showed that the increased levels of cytokines occurred primarily in children who had a regressive form of autism. Regression refers to a loss of developmental skills such as language and sociability after a period of seemingly normal early development.

In addition, the investigators found that impairment associated with autism increased with elevated cytokine levels. The findings suggest that ongoing inflammation may be linked to some forms of autism and autism-linked disabilities. The researchers called for more study on the implications for diagnosis and treatment of autism’s core symptoms.

The research team, led by immunologist Paul Ashwood, Ph.D., analyzed cytokine levels in blood samples from 223 children ages 2 to 5. Of these, 97 had a confirmed ASD diagnosis, 39 had developmental disorders other than autism, and 87 were typically developing children.

Using blood samples, the researchers measured levels of twelve different cytokines – immune-signaling molecules associated with inflammation. Levels of four of the twelve were significantly higher for children with autism than for children with typical development. Cytokine levels were generally highest in children with regressive forms of autism compared to those with non-regressive forms. The researchers considered a child’s autism “non-regressive” if that child had shown signs of autism from infancy.

Past studies have likewise found evidence that immune system abnormalities are more common in children with ASD than in typically developing children. This study is the largest to date looking specifically at levels of cytokines, which may influence brain development and behavior.

Further research is needed to confirm these findings and explain the association between these inflammatory markers and autism. It is unclear, for example, whether inflammation produces or worsens core symptoms or whether both inflammation and autism stem from a common biological issue. The research was funded in part by a grant from Autism Speaks.

Ashwood P, Krakowiak P, Hertz-Picciotto I, et al. Elevated plasma cytokines in autism spectrum disorders provide evidence of immune dysfunction and are associated with impaired behavioral outcome. Brain, Behavior, and Immunology. 2011;25(1):40-5.

Earlier Autism Screening Shows Promise Brief parent questionnaire enables pediatricians to screen for autism at one-year well-baby check up

Early detection of autism allows for early intervention with behavior therapies that can improve outcomes. Current American Academy of Pediatrics guidelines call for screening all toddlers at 18 and 24 months, the age at which existing screening methods are best able to identify children with autism. Physicians have lacked validated autism screens for younger children – until now.

This year, research demonstrated that a brief parent questionnaire, administered at a baby’s one-year well-baby check-up, can help pediatricians identify babies who have autism or are at high risk of developing it.

The study involved 137 pediatricians who handed out a simple 24-item checklist to all parents bringing in babies for routine one-year checkups. The questionnaire, called the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist, took the parents about 5 minutes to complete. It included such questions as “Does your child smile or laugh while looking at you?” and “How many blocks or rings does your child stack?” The pediatricians then reviewed the checklist (a 2-minute process), flagging those babies who scored below a pre-set threshold. (A previous study showed this checklist to be valid.)

In all nearly 10,500 children were screened, and 346 were flagged as at risk for autism and referred to an autism clinic for further evaluation. Of these, about half were followed to 3 years, 32 of them receiving a diagnosis of autism spectrum disorder (ASD). Another 56 were diagnosed with language delay, 9 with developmental delay, and 36 with other diagnoses.

The screen was able to accurately predict autism or other developmental delays about 75 percent of the time. This suggests that the questionnaire or a similar screen may be useful for earlier identification of ASD and other developmental delays that would benefit from early intervention.

The study, led by Karen Pierce, Ph.D., of the University of California-San Diego School of Medicine, also highlighted the ease of putting an early infant screening program into practice. At the time of the study’s publication, all of the 137 pediatricians who had participated in the project said they were still using the screening tool at one-year well-baby checkups. Prior to their participation in the study, only 30 of the pediatricians (22 percent) had routinely screened for autism at one year.

Pierce K, Carter C, Weinfeld M, et al. Detecting, Studying, and Treating Autism Early: The One-Year Well-Baby Check-Up Approach. J Pediatr. September 2011;159(3):458-465.

About Autism

Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 110 children in the U.S. is on the autism spectrum – a 600 percent increase in the past two decades that is only partly explained by improved diagnosis.

About Autism Speaks

Autism Speaks is the world’s largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research and developing innovative resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks’ Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council has received over $300 million in donated media. Autism Speaks’ family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit, a Grandparent’s Guide to Autism, and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government’s response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 29 states thus far, with bills pending in an additional 10 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

About the Co-Founders

Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He served as Vice Chairman of General Electric; and as the Chief Executive Officer of NBC and NBC Universal for more than twenty years. He also serves on the board of directors of the Polo Ralph Lauren Corporation, Mission Product, EMI Group Global Ltd., and AMC Networks Inc., and is a Trustee of the New York Presbyterian hospital. Suzanne Wright is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School.

###

Real World Autism Functioning Levels and Conor's Hospital Adventure

2011-12-17T14:10:00.000-04:00

Dr.Everett Chalmers Hospital,

Fredericton, New Brunswick

One of the many controversies that mark discussions of autism disorders is the question of functioning levels. Some high functioning persons with autism and Aspergers object to the notions of low and high functioning autism. Those who claim that a reference to low functioning autism is not founded in "science" do not provide any credible scientific authority for their beliefs. Nor do they usually make reference to daily real life situations of the kind experienced this week by my severely autistic, low functioning son Conor. Conor had to undergo dental procedures at the Dr. Everett Chalmers Hospital, the "DECH" as it is often described locally, and he did very well throughout the process. The fact though that he had to be placed under a general anesthetic in a hospital setting for procedures which most people would undergo with a local anesthetic in a conscious state in their dentist's office arises because he is severely autistic and it would be too risky to his safety and well being to have a dentist do extensive filling work while he was conscious.

In this case the severity of his autism disorder also precluded use of another local hospital in nearby Oromocto. This meant a longer wait for the procedure than if the Oromocto option had been open to him. The Oromocto hospital was used three years ago before his growth spurt which now has him standing a very solid 6' 1" as measured during Wednesday's preparatory procedures at the hospital. The dental surgeon who performed the procedures explained that Conor because of the severity of his autism condition AND his current size was now considered too big a risk for the Oromocto hospital.

To prepare we called in advance and spoke with hospital staff about arrangements including a quiet, private waiting room area. We also spoke about it with Conor well in advance making sure he knew he would not be going to school that day. Conor loves school and a surprise cancellation for any reason such as weather can be difficult for him. To ensure as positive an outcome as possible at the DECH it was necessary to prep him for what we described as a Hospital Adventure.

All went well, and then some, with Conor enjoying Mom and Dad's company. He also actually seemed to enjoy the attention of the several nurses, the anesthesiologist and the dental surgeon. I was permitted to gown (no pictures were taken of me wearing the hospital gown and hat) and accompany Conor to the OR, hold his hand and calm him while the IV was inserted and he drifted off to sleep. Before that point several nurses were attending to him in the OR and he thrived on their attention barely noticing Dad standing there holding his hand. There was some blistering and swelling of his lower lip (all now cleared up) and some very mild nausea after the operation but our big strong boy walked out holding Dad's arm without the need of a wheelchair. A trip to the Burger King drive-through and some cheese sticks and Conor was happy heading home. Conor spent the afternoon on the living room couch ... the cozy couch ... with lots of pillows and blankets and lots and lots of attention from Mom and Dad for the rest of the day. He loved every minute of it.

We were proud of how well Conor did Wednesday on his Hospital Adventure. But we don't lose sight of the underlying realities. We love our Conor and practice reality based autism acceptance, a form of acceptance which recognizes that autism is a disorder with different functioning levels and different accommodations for daily functioning levels. Failure to recognize those different functioning levels is nothing less than discrimination practiced by those who should know better. Because we do recognize the realities of Conor's autism disorder, and his functioning levels, we can help him have positive outcomes as occurred this week. Because we do recognize his functioning level realities we can free him up to succeed as he did this week to our great joy.

The next day Conor even felt good enough to tease Mom and Dad with requests for another "Hospital Adventure". As soon as we said yes to another Hospital Adventure Conor would laughingly withdraw the request replacing it with a request to go back to school.

To each their own. In our house we embrace the Joy of Conor while practicing reality based autism acceptance, acceptance which recognizes the severity of his autism disorder and the limitations it imposes on his daily functioning. As birthday 16 approaches next February we figure we have a pretty good handle on how to help our son, how to appreciate him and the joy he brings us. Reality based autism acceptance "functions" well for us and for Conor.

Autism Fiction Award 2011

2011-12-14T23:10:00.003-04:00

Please visit the top space on the sidebar and vote for your favorite work(s) of autism fiction in the Autism Fiction Award 2011 poll. The nominees, as objectively selected by AutismRealityNB, are:

a. LA Times Autism Series, Alan Zarembo

b. Nature Journal Changing Perceptions: Power of Autism, Laurent Mottron

c. ASAN Claim to Represent People With Autism In Ethics Debates

d. DSM5's New Autism Spectrum Disorder (Formerly Known as Asperger's Syndrome)

Autism Parents: Take the Time, Make the Time

2011-12-13T14:55:00.003-04:00

The photos that follow show my walk from my home to my office in beautiful Fredericton, New Brunswick a place I am happy to call home, a place that allows me to take the time I need and want for me and my children. The weather this morning was beautiful and very pleasant for mid December. With snow coming soon I could not resist the urge to get outdoors, to take the time to walk to my office instead of driving, to take the time for myself. My office is only a few minutes drive, literally 3-5 minutes from where I live. A walk is only 15-20 minutes.

This morning I brought my camera and extended my walk time to and from the office, from Nashwaaksis on Fredericton's north side across the bridge and the St. John River to my office on the south side, and back, but it was worth it for me. Everyone needs time for themselves and parents of autistic children, parents of severely autistic children have their specific need for time for themselves. This morning I took some and I am happy that I did. I encourage every autism parent to take time for themselves, to make time for themselves.

During my walk I reflected on how lucky I am to live where I do, here in Fredericton, New Brunswick, Canada. Life is challenging at times as it is everywhere but generally we are very fortunate and I know that and reflected on it as I walked. I also thought of how lucky we were when we moved from Burlington, Ontario back home to Fredericton, New Brunswick in 1997, just one year before Conor was diagnosed with his autistic disorder. Lucky not because Fredericton is better than Burlington but lucky because the move allowed me to spend much, much more time with both of my sons as they have grown. Lucky because I have been able to dedicate significant portions of my daily life to both my sons and in particular the challenge, as well as the joys, of raising our severely autistic younger son, who is now, in every physical sense, a strapping young man.

When we lived in Burlington we enjoyed the town. It was a very pleasant community in which to live. Both our sons were born at the Joseph Brant Hospital in Burlington. But my work at that time took me from the western edge of Burlington to downtown Toronto. Whether by car or by Go Train that meant a 2 1/2 hour commute each way, each day or 5 hours a day, 25 hours a week. Since we returned to Fredericton, when I drive to the office and back it is usually no more than 5-10 MINUTES of commuting each day. And when I feel like it I can walk and enjoy the time.

I can not imagine how different life would be for both of our sons, and particularly for our younger son with his severe autism and intellectual disability challenges, if I had not been part of their lives for those 25 hours a week over the last 14 years as they grew from little boys to young men. I just can't imagine.

I know I am very lucky and I believe my sons too have been fortunate to have had their Dad with them during these many hours and years of their journey from childhood to manhood. I know not everyone enjoys such good fortune but I encourage every autism parent to take whatever time, to make whatever time, they can for themselves and their children.

Autism Rising: LA Times Gets It Wrong

2011-12-12T05:45:00.000-04:00

The LA Times has written an ill informed, one sided, article on autism increases which misleads the public into believing that the evidence has clearly established that the entire increase in autism diagnoses over the past two decades is attributable to the 1994 DSM diagnostic manual changes, diagnostic substitution, and the hunt for government funded autism services. The article, Discovering Autism Unraveling an epidemic, can be summarized in the following paragraph from the article:

"Two decades into the boom, however, the balance of evidence suggests that it is more a surge in diagnosis than in disease."

The truth is the LA Times article publishes no reference to studies that confirm that conclusion about the alleged balance of evidence. The LAT does refer dismissively to Dr. Irva Hertz-Piccioto who has conducted research on possible environmental causes of autism disorders. It also offers selective quotes from a variety of other autism sources, in addition to Roy Richard Grinker, the anthropologist and father of a high functioning child with Aspergers, who has sought out all the allegedly autistic Korean children who function very well in Korean society.

What the article does not mention is the emerging consensus that autism arises not just from genetic factors, which would support the biased perspective the LAT offers, but from the interaction of genetic and environmental factors. Nor, in dismissing Dr. Hertz-Picciotto's work, does it mention that genetic autism research has been overwhelmingly funded at the expense of environmental autism research. Better to present positively the opinions of a biased anthropologist with an agenda then an actual autism researcher.

Dr. Bearman, a sociologist, is also quoted but not in any meaningful way. He was interviewed more fully, or quoted more fully, in an article on the National Institute of Mental Health website reporting a discussion Dr. Bearman had with Dr. Tom Insel of the IACC:

Dr. Insel: From what you know now when you add all of those together how much of the increase can you explain?

Dr. Bearman: Well that’s a complicated question, but I think we can pretty uniquely associate about a quarter of the increase from the birth cohorts from 1992 to 2001 which is a lot, to diagnostic change on the border between diagnosis and mental retardation in autism. I think we can associate about 16 percent of the increase on the other border between autism and other neurodevelopmental disorders on the spectrum: Asperger’s, PPDNOS etc. And those are largely non over-lapping components of increase, so that’s about 40 percent. I think the spacial clustering itself adds another few percent. I would say I am confident that 40 percent of the increase I think I know what caused that. That leaves a lot of increase left, 50 percent is a lot to look for still.

Dr. Insel: Any ideas about what’s driving that other 50 percent?

Dr. Bearman: Well, some is genetic. I think that the increased parental age accounts were 11 percent of the increase over this period and that’s a lot and the mechanism by which increased parental ages expressing itself I think likely largely genetic. I think the tricky part is going to recognize that it would be harder now to find that 50 percent. It would look like it should be some toxicological environment that’s shared because of the spacial clustering. Because there’s a very strong process of amplification of the understanding of autism that leads to increased diagnosis as parents learn how to recognize symptoms a very, very, small event that would transform the environment five years ago, ten years ago, even you could imagine, 40 years or 50 years ago, when the moms of children with autism now were in utero as eggs- a very small event could cascade into a larger epidemic now."

The LA Times could have checked out the web site of the IACC, the Interagency Autism Coordinating Committee which states:

"As with many complex disorders, [autism] causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. ... In addition, a number of other environmental factors are being explored through research because they are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as parental age, exposure to infections, toxins, and other biological agents may confer environmental risk. ... Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard,; Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors" [Underlining added - HLD]

- United States IACC (Interagency Autism Coordinating Committee)

No one disputes the obvious fact that the 1994 DSM changes increased the number of autism diagnoses. The LAT implies though that the "science" indicates that the increase in autism diagnoses is simply a matter of diagnostic change and substitution and that environment plays no significant role in causing autism disorders. That position amounts to a confession of ignorance and/or bias by the LAT ... and a lack of concern over whether the number of autism diagnoses could be decreased if the research dollars were distributed more evenly towards research of environmental causes and triggers of autism disorders.

We Don't Need Anymore Autism Ideological Extremism

2011-12-10T05:01:00.000-04:00

In Colorado the prosecution has announced that it will not pursue charges against a woman who killed her child because she feared that her child was autistic. Unfortunately some in the ever controversial world of "autism awareness", including Shannon Des Roches Rosa aka Squid Rosenberg of the ironically named Thinking Person's Guide to Autism have chosen to use this tragedy to promote their particular ideology and viciously attack those with whom they disagree.

A defense psychiatrist and a prosecution psychiatrist in Colorado each found the woman to be insane. The hospital in which she is detained refuse to release her for a court appearance and when she did appear it was in a suicide preventing smock. The details are of her killing of her child, as reported at Daily Camera online are gut wrenching.

"Child would 'ruin' her life

During the initial investigation last summer, Rochester told detectives that she believed her baby, Rylan, was autistic, and that having an autistic child would emotionally and financially "ruin" her life.

According to a police report, she told detectives that she placed a plastic bag over Rylan's head. When the infant was still breathing some time later, she told police she placed blankets over his face.

When Rylan was unresponsive in the morning, his parents rushed him to Avista Hospital in Louisville, where he was declared dead June 1, 2010.

Since pleading not guilty by reason of insanity late last year, Rochester has spent much of her time at the state hospital in Pueblo.

On one occasion, doctors there refused to release her for a court appearance in Boulder. They said she was too unstable to travel. Rochester frequently has appeared in court wearing a suicide-prevention smock."

Out of this tragedy Shannon des Roches Rosa was inspired to advocate ... not for improved services, and help, for mothers with serious mental health issues and post partum depression but to attack "negative portrayals of autism" in the media, parents and parent organizations that paint negative pictures of autism. She attacks Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds and describes them as "evil":

"Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics."

Ms Des Roches Rosa is not content to attack anyone who presents the negative realities of autism disorders. I suspect she would take great offence and declare me evil for referring to autism as a disorder or group of disorders. She does, however, find the wherewithal in her anguish and anger to pat herself, and her fellow "Thinking Persons", on the back and promote their forthcoming book:

"this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

For Des Roches Rosa, judging by the content of her blog page, autism is not a serious mental disorder listed in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association. For her autism does not include intellectual disability, serious self injury, injury to family members and caregivers. When an autistic person goes wandering and drowns or dies in a snow storm in Nova Scotia that is not autism. When a 50 year old severely autistic woman is abused in a facility in New York state by her attendants who are caught only because of a surveillance camera and a conscientious co-worker that is not autism. The adult autistics that, in my capacity as an autism organization representative, I have visited in psychiatric hospital facilities where they live out their lives, are not autism. For Ms Des Roches Rosa my severely autistic son who has limited understanding of the world, has limited communication skills, has bitten his hands and wrists and slapped and hit his head is not autism. For her talking honestly about my son's autism realities makes me evil.

For Des Roches Rosa autism is not a disorder. For her it is just some proudly quirky people fighting against the forces of evil including parents struggling to help their autistic children live the best lives they can.

I do not agree with Ms Des Roches Rosa and her fluffy, feel good, very high functioning autism advocacy. I find her claim to be a "Thinking Person" capable of guiding others on autism subjects to be ... amusing. But, unlike her, I do not , because of our differing perspectives about autism disorders describe her as "evil".

Shannon Des Roches Rosa is misguided, seriously misguided in her views about autism disorders. In her essay on the Colorado infanticide she has engaged in ideological extremism. She apparently harbors much hatred towards parents who view autism disorders as ... disorders ... but I have no reason to describe her as "evil". And I do not intend to follow her example and declare war on her or any other member of the world autism "community" with whom I disagree about autism disorders.

To Shannon Des Roches Rosa, I wish you and your loved ones happiness during the approaching holiday season and beyond.

Autism Research Studies Exclude Low Functioning Autistic Participants

2011-12-07T08:42:00.004-04:00

Discrimination against persons with low functioning autism disorders takes many forms. It is particularly rampant in the autism research world where studies purporting to inform us about autism almost invariably exclude low functioning autistic participants. Conclusions are again being drawn about persons with autism spectrum disorders based on a study which excluded low functioning autistic participants. The study examined the effectiveness of the antidepressant Prozac in treating repetitive behavior and obsessive-compulsive behavior in adults with "autism".

Presumably physicians will be prescribing Prozac either as a consequence of this study and similar confirming studies. If all their clients are persons with high functioning autism and Aspergers they will at least have done so on some evidence basis. If physicians prescribe Prozac to low functioning autistic adults based on this and similar studies however they will be doing so without any evidence basis.

As reported in TIME, Prozac May Reduce Symptoms of Autism in Adults:

The antidepressant Prozac may alleviate repetitive behavior and obsessive-compulsive symptoms in adults with autism, reducing these defining symptoms of the disorder, according to new research.

The research, which included 37 high-functioning autistic adults, mainly diagnosed with Asperger's syndrome, followed participants for 12 weeks. Taking Prozac (fluoxetine) doubled the chances that a patient would show overall improvement, measured by their clinicians. Half of the participants taking Prozac had significant reductions in obsessive-compulsive symptoms, compared with 8% taking placebo. Side effects were mild to moderate and participants taking Prozac did not show increases in suicidal thoughts or ideas.

"Repetitive behavior is a core symptom of the illness," says lead author Dr. Eric Hollander, medical director of the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York, explaining that "from a very early age, these children have rituals and routines. For example, they like to line up their toys and they get very bent out of shape if there is any deviation."

The abstract for the study, A Double-Blind Placebo-Controlled Trial of Fluoxetine for Repetitive Behaviors and Global Severity in Adult Autism Spectrum Disorders, published in The American Journal of Psychiatry, refers to the participants as adults with ASD's, or Autism Spectrum Disorders, but does not indicate that the study does not involve any low functioning autistic participants. The title of the study report also refers to adult autism spectrum disorders without identifying the exclusion of low functioning autistic participants.

Aspergers? CHECK High Functioning Autism? CHECK Low Functioning Autism? NO, not in the "autism" research world.

Autism and Dr. Allen Frances' Question 5: Will Autism Research Be Possible After the DSM-5?

2011-12-06T04:04:00.000-04:00

Dr. Allen Frances, chair of the DSM-IV Task Force

and principle investigator on the DSM-IV Field Trials

The last major changes to the "autism section" of the DSM occurred in 1994 with the grouping of Aspergers, PDD-NOS and Autistic Disorder in the Pervasive Developmental Disorders section and are still cited by many as the primary basis for the massive increases in autism diagnoses over the past two decades. No one doubts that a substantial amount of the recent increases are due to the DSM-IV diagnostic changes. The debate is over whether those changes account for the entire increase or whether they serve to mask or obscure the role of possible environmentally induced increases. With the DSM-5 soon to hit doctors' bookshelves the ability to develop a reliable understanding of what is behind future changes in the numbers of autism disorder diagnoses will probably be lost forever, or at least for the foreseeable future. Epidemiological studies, already the subject of much debate, and much confusion, could be rendered useless as tools for understanding what causes autism disorders.

In his November 8, 2011 article, APA Responds Lamely to the Petition to Reform DSM-5, re-posted by Brent Robbins PhD December 5, 2011 on the blog of the Society for Humanistic Psychology, Division 32 of the American Psychological Association, Dr. Frances, primary architect of the DSM-IV, asks five questions about possible diagnostic inflation resulting from the DSM-5. Question 5 asks the million dollar question:

5) Won't the many small, needless, and arbitrary changes in DSM-5 complicate future research efforts and make impossible the interpretation of data collected before versus after DSM-5?

If the answer to Dr. Allen Frances question is yes, as the Frances led DSM-IV experience suggests, then our ability to determine whether specific environmental factors are contributing to, or causing, autism disorders could be lost for another generation or more.

Possible Prenatal, Environmental, Causes of Autism Disorders: Valproate Drugs?

2011-12-04T06:49:00.000-04:00

The following information is taken from a July, 2011 information update on the Health Canada web site. It indicates that recent studies have found that "children whose mothers took a valproate drug tend to score lower on cognitive (intelligence) tests than children whose mothers who took other anti-epileptic medications during pregnancy."

The release also indicates, somewhat more ambiguously, that "Product labelling for both Depakene and Epival [valproate drug brands sold in Canada] contain information on the risk of birth defects (e.g., spina bifida), as well as the risk of developmental delay, autism and/or autism spectrum disorders." It would be helpful if Health Canada explained exactly what that statement was supposed to mean.

The abstract of a study reported in 2005 is somewhat clearer. In Arndt TL, Stodgell CJ, Rodier PM (2005). "The teratology of autism". Int J Dev Neurosci 23 (2–3): 189–99. doi:10.1016/j.ijdevneu.2004.11.001. PMID 15749245 it states that:

"Autism spectrum disorders affect behaviors that emerge at ages when typically developing children become increasingly social and communicative, but many lines of evidence suggest that the underlying alterations in the brain occur long before the period when symptoms become obvious. Studies of the behavior of children in the first year of life demonstrate that symptoms are often detectable in the first 6 months. The environmental factors known to increase the risk of autism have critical periods of action during embryogenesis. Minor malformations that occur frequently in people with autism are known to arise in the same stages of development. Anomalies reported from histological studies of the brain are consistent with an early alteration of development. Congenital syndromes with high rates of autism include somatic that originate early in the first trimester. In addition, it is possible to duplicate a number of anatomic and behavioral features characteristic of human cases by exposing rat embryos to a teratogenic dose of valproic acid at the time of neural tube closure."

Given the huge imbalance of autism research funding that overwhelmingly favors genetic research over environmental focused autism research it is amazing that the autism paradigm shift which emphasizes the interaction of genetic and environmental factors is taking place. It is encouraging to see research of possible environmental factors particularly studies that examine possible prenatal causes of autism disorders.

The Autism Enigma: The Bacterial Theory of Autism

2011-12-03T14:30:00.005-04:00

David Suzuki in Fredericton

Photo by Charles LeBlanc

When David Suzuki speaks people listen as shown in this photo by New Brunswick blogger Charles LeBlanc taken in the United Church near my office in downtown Fredericton. As you can see the church was, literally, filled to the rafters. David Suzuki is one of the most trusted voices in Canada in explaining science and the world in which we live.

On Thursday December 8 David Suzuki will be presenting the Autism Enigma on "The Nature of Things". I have no idea what will be said, what perspectives will be offered, or whether I will agree with all, or any, of what is said, but, because it is David Suzuki narrating, I will be shocked if it is not a well informed, balanced and objective discussion of the subject. This "autism dad" will be listening. I encourage others with an interest in understanding possible causes of autism disorders to do the same.

The following press release was provided by Laurie Mawlam, Executive Director of Autism Canada:

(CORRECTION NOTICE - The Autism Enigma will air at 8 pm Atlantic, not 9 pm as I had previously indicated. HLD)

THE AUTISM ENIGMA,

THE STARTLING NEW DOCUMENTARY FROM COGENT/BENGER,

AIRS ON CBC's "THE NATURE OF THINGS"

THURSDAY DECEMBER 8, 8 PM ET, 8 PM Atlantic

Available for phoners: Marion Gruner, Dr. Derrick MacFabe of University of Western Ontario, Dr. Emma Allen-Vercoe, Microbiologist at University of Guelph.

TORONTO November 7, 2011. THE AUTISM ENIGMA, the new documentary from the award-winning Cogent/Benger Productions, tackles one of the most contentious issues in medicine today: the various, and often conflicting, hypotheses about autism’s cause. It airs on CBC's "The Nature of Things" on Thursday December 8, 8 PM (ET/PT)(8:30 PM Nfld)(8 PM Atlantic), with a second window on December 15 (10PM ET/PT. 10:30 Nfld.)(11PM Atlantic).

The film presents the fresh perspective of the “Bacterial Theory” of autism. Director Marion Gruner (a new mother who decided to investigate autism rather than just worry) along with co-director Christopher Sumpton, went beyond celebrity-endorsed theories and common assumptions to make new research accessible and understandable to all parents.

Narrated by David Suzuki, The Autism Enigma is written and directed by Marion Gruner (Pharma Sutra) and Christopher Sumpton (Pedal Power), produced by Christopher Sumpton, Robin Benger (Sex Scandals in Religion, Five Roads to Freedom), and Marion Gruner. Cinematography by Michael Grippo, csc, editing by Matthew Campea, and original music composed by Kevan Staples.

Autism is the fastest rising developmental disorder in the industrialized world. Even accounting for better diagnosis, its numbers have increased by an astounding 600% in the last twenty years. Even more disturbing is that science cannot say why. Research is inconclusive, but the emerging theme is that autism, while possibly stemming from genetic vulnerability, is triggered by environmental factors. Is something in our Western lifestyle proving too much for children to bear? Some say it’s the canary in the coalmine. Many say it’s an emergency.

Meanwhile, 70% of children with autism exhibit severe gastrointestinal symptoms, prompting some microbiologists to direct their research to an unexpected place - and ask whether autism actually begins in the gut.

The Autism Enigma looks at the progress of an international group of scientists examining the gut’s amazingly diverse and powerful microbial ecosystem for clues to the baffling disorder, and the extraordinary efforts of parents who have been relentlessly pushing science forward in hopes of finding answers for their children’s condition.

The documentary features: Laurie Mawlam, Executive Director of Autism Canada, Dr. Derrick MacFabe of University of Western Ontario, Adar Hassan and Idman Roble of the Somali Parent Support Group, Toronto, Dr. Emma Allen-Vercoe, Microbiologist at University of Guelph, and some children and child care workers from Puzzle Pieces Ltd.

The Autism Enigma is a Cogent/Benger Productions production made in association with the Canadian Broadcasting Corporation and ARTE France, and with the assistance of The Canadian Film or Video Production Tax Credit.

Robin Benger and Christopher Sumpton teamed up in 1997 to produce In Security for the CBC, which then led to Eastside Showdown for the NFB. Cogent/Benger Productions was formed in 1999 to continue in the same vein, producing relevant, creative documentaries such as Sex Scandals in Religion, Five Roads to Freedom, Pedal Power, Porndemic, Pharma Sutra, China’s Leap of Faith, How To Stop a Hurricane, which received the innovation prize at the Pariscience Film Festival, Money & The Maker, The In-Between World of MG Vassanji, Destiny: The Life & Times of Paul Anka and Wolverine: Devil Of The North. C/BP's programs have been seen on Canadian networks, such as CBC, CTV and Discovery, as well as internationally.

Autism? Florida IT Autism Prof Says: Hakuna Matata!

2011-12-01T07:02:00.010-04:00

Dr. Ivy Chong, Florida Institute of Technology

It seems to be impossible for anyone connected with the Mainstream Media, the MSM, to speak honestly and accurately about the natue of autism disorders. Even Dr. Ivy Chong of the Florida Institute of Technology whose site lists her impressive autism resume feels compelled to paint a pretty picture of autism disorders and ignore the harsher realities as shown in the following excerpts from her interview by Matt Reed at Florida Today:

To learn more about the mysterious disorder, I interviewed Dr. Ivy Chong, director of behavioral services at the Scott Center for Autism Treatment at the Florida Institute of Technology in Melbourne. Chong is a licensed psychologist and board-certified behavior analyst.

.....

Q:What happens to autistic children when they become adults?

Chong: A person with autism can expect to live a very good quality of life. They can hold jobs. There are some very bright individuals who aren’t even diagnosed with Asperger’s until they get to college, and they do very well. Their level of focus is exceptional in certain topics or courses.

As the children we are working with get integrated and go to school, and we have treatments for social skills and getting jobs, the sky’s the limit.

Professor Chong could have, but did not, mention the 70% of persons with Autistic Disorder and Intellectual Disabilities and severe challenges in daily functioning. She could have mentioned the 30% of those with autism and epilepsy. Instead she chose to mention high functioning persons with Aspergers some of whom are only diagnosed at university. She could have mentioned the very serious self injurious behavior issues, wandering, drownings and traffic deaths of those severely autistic who do not understand how the world works but she did not. She could have mentioned the uncounted numbers of severely autistic adults living with parents, in group homes and in institutional care, but she did not.

Just more feel good buzz about autism the beautiful and nothing about those who are most severely affected by autism disorders. Just the usual omission from our public consciousness of the invisible autistics, those in greatest need of our attention and assistance. From a MSM outlet like Florida Today? Par for the course. From an accomplished, experienced BCBA certified director of an autism treatment center? Very surprising.

Hakuna Matata! It's a problem free philosophy!

An Autism Taboo That Needs To Be Broken

2011-11-30T09:13:00.000-04:00

Break The Autism Taboo

Taboos, of autism and parenting at Ramblings of a Stone Age Queen is one of the best commentaries I have read about the realities of parenting an autistic child who suffers from meltdowns that can result in aggression towards herself and the parent who cares for her. This is not a fluffy opinion piece by a high functioning autism researcher sitting in his lab. This is a concerned parent talking honestly about the harsh realities, the thoughts that spring into her mind in the midst of being attacked by the child she loves. This is the story of mandyque; one parent who has stood up and said "this is happening to me".

I encourage you to visit mandyque's blog Ramblings of a Stone Age Queen where the commentary is posted. If you are a parent of a child with autism leave a message of support. If you feel up to it tell your story. Help mandyque break a taboo that needs to be broken.

Following is the entire comment. I was going to post an excerpt but this is such an honest, courageous and compelling story that I am reprinting it in its entirety. It is a story that should be known:

"I have had a particularly difficult weekend with my autistic daughter, and it occurred to me that there are some things that only other parents of children with autism understand properly. But even then, there are things which are left unsaid, because we are too scared that we will end up facing criticism, or worse, social services involvement. But if we aren't honest about what is going on, we carry on suffering in silence, convinced that we are the worst parents and that we will be hated and reviled if we dared to speak of our deepest fears.

On Saturday night, daughter had a major meltdown. She became so upset and confused that she attacked me, lunging forward and clawing at me, and she spent over and hour screaming blue murder. I have no idea what the neighbours must have thought, she sounded like she was being brutally tortured. The fact is, this hideous scenario occurred because she wouldn't go in the bath, then when I said it was time for bed, she wanted to go in the bath, but it was too late. Perhaps I should have given in and bathed her anyway, but it's all part of her needing to learn flexibility, that she can't always have her way, and besides, I was exhausted already and needed to go to bed myself.

Finally, I was able to get her upstairs, but she lunged for me again, trying to push me out of the way, clawing at my arms and chest and screaming. This is where the shameful part really kicks in. In any other situation, if someone attacked you, the fight or flight reflex kicks in, but of course you can't fight back when your disabled child attacks you, because that is a child protection issue. Nobody considers that it's also a carer protection issue, and no carer wants to admit that they had the urge to fight back. I didn't want to harm her, and I didn't, but the urge was there. The urges included wanting to tear at her hair, putting my hands on her neck, slapping and punching her. In any other situation that would be accepted as a normal reaction, but when it's your child, it's met with shock and concern that you are an abuser. I repeat again that I did not act on these impulses, I did not harm her, but to be put in that situation is an unbearably hard thing for a parent to cope with.

Eventually I managed to get her into the bathroom, where she sat on the toilet, refusing to move for over half an hour, while I got out and waited on the landing. When she is so wound up, she needs a lot of time to calm down, without stimulation and attention, so away from the TV and computer for a start! I sat on the floor, shellshocked and shattered by this latest episode and hoping that she wouldn't come and attack me again. She screamed and screamed for a while until exhaustion made it subside, but she kept winding herself up and having a little scream, which I had to ignore, while making sure that she can't come downstairs again. Finally she calmed down enough to realise that she had to go to bed, and bizarrely, once she had calmed down and come to terms with the situation, she just got up and went, as quick as that. She just stood up and walked into her bedroom, where we had a hug and a goodnight kiss and she went to bed. And that was the end of that, for her at least, the whole situation, over and done with. In the meantime, I'm ready to crack up, I don't know whether to cry or scream, I'm completely dazed by the whole event.

But how do you deal with this sort of situation? I know how to calm her down, I know that putting space between us works, I know that she needs a low stimulation environment and time to process information, but what do you do when your child attacks you? Especially as they get older and stronger, you can't pick a 15 year old up and put them in time out like you can with a tantrumming toddler, you can't lock them in somewhere because that is imprisonment, and you certainly can't hit them back. Manual handling courses are available for teachers and professional carers, but parents are not allowed to do these courses for insurance reasons. There is no protection for the carer at home. Parents of teens and young adults are actually told to call the police, but what is the point of that? Criminalising a disabled young person who isn't being violent because they are bad, but because they are confused and upset? Terrifying them with a visit from a policeman, who we all know is there to catch bad people and stop them doing bad things by putting them in jail? There's little point in calling on help from social services, you end up being made to feel that you are a failure as a parent instead of being supported.

The only people who truly understand are other parents who suffer the same way, but none of us get the help to deal with situations like this. A friend of mine today asked if I had a panic button, similar to the ones that elderly people use to get help, but there is no such support that I know of. What is the answer? I'm damned if I know, but taboos are there to be broken, and if one person can stand up and say 'this is happening to me', maybe others won't feel quite so alone."