Thursday, June 30, 2011

Blaming Autism Parents: The Self Described Science Bloggers

Harriet Hall, MD,  photo by Sgerbic 

There are a number of so called science bloggers on the internet that routinely attack any criticism of, or concerns about,  vaccine safety. Because of the belief by many parents of autistic children that their child's autism is in essence a form of vaccine injury, parents of autistic children are routinely attacked, ridiculed and mocked by self described science bloggers and authors on the internet.  Any scientific study is used as a pretext to attack the "anti-vaccine contingent" code for for autism parents (medical persons who ask questions about vaccines and autism such as Dr. Bernadine Healy are simply ignored) who feel their children's autism resulted from, or was triggered by, vaccine injections.  A blatant example of this type of "science" blogging can be found in the comment by Harriet Hall MD,  Autism and Prenatal Vitamins, on the blog titled Science-Based Medicine .

In Autism and Prenatal Vitamins Dr. Hall, also known as the "SkepDoc" embraces the recent study by Schmidt et al. published in Epidemiology on May 23, 2011, entitled “Prenatal Vitamins, One-carbon Metabolism Gene Variants, and Risk for Autism.”  That study as summarized by Dr. Hall, "found that mothers who didn’t take prenatal vitamins were at greater risk of having an autistic child, and certain genetic markers markedly increased the risk. There was a dose/response relationship: the more prenatal vitamins a woman took, the less likely she would have an autistic child."

The good Doctor does report some weaknesses of the study: "A weakness of their study is that it depends on patient recall long after the fact. Also, it did not attempt to gather any diet information." I am just an ignorant parent of an 15 year old son with autism (and a neutral in the vaccine autism controversy) but it seems to me, as someone who is also a lawyer, that evidence based on memories long after the fact, with no record of other sources of vitamins ... diet ... are not just weaknesses. It seems to me they are serious weaknesses in the study.

It would also be interesting to see the actual questions asked about prenatal vitamin consumption long after the fact  to see if they were in any way "leading" questions.  As a humble, but active, litigation lawyer I have to be conscious of such questions in a courtroom or tribunal proceeding since leading questions contain the answers being sought by the person asking the question. They suggest the "correct" answer to the person being questioned. The risk of such questioning arising in a study based on memories of long ago events which do not account for possible competing factors .... diet ... seem to this humble small town lawyer to be quite substantial.

I describe myself as a neutral in the vaccine autism war. I do not know what caused my son's autistic disorder.  I do accept the prevailing view that autistic disorders likely result from the interaction of genetic and environmental factors. I believe that the well known fact that autism research funding has been overwhelming directed towards genetic research has limited our understanding of possible environmental triggers. I also believe that vaccine autism connections have not been thoroughly studied despite the Offit Offensive rhetoric to the contrary.  Specifically, Dr. Bernadine Healy pointed out that more study is needed on the possible impact of vaccines taken by pregnant women, particularly when they contain thimerosal.

I welcome research like the vitamin study commented on by Dr. Hall and hope that more studies are conducted on the possible role of prenatal vitamins in causing or triggering autism. Presumably such studies might confirm, refute, modify, or clarify the results reported in this initial study. What I do not welcome is the tendency of intense vaccine safety defenders like Dr. Harriet Hall to use any such study as a launching pad to attack autism parents and to deter any further examination or study of possible vaccine autism connections. Having provided a clear and comprehensible summary of the prenatal vitamin-autism study that even this  autism parent can understand Dr. Hall apparently felt the need to attack autism parents and defend vaccine safety even though the study had nothing to do with vaccines:

"How will the anti-vaccine contingent react to this new study? It was convenient and satisfying for parents to be able to blame vaccines and accuse the evil medical establishment of causing their children’s autism. Now will those parents accept that at least part of the responsibility lies with their own genetic contributions and the mother’s actions prior to pregnancy? That’s not as palatable a thought, but it’s more realistic."

Dr. Hall's comment amounts to a confession of some important points:

1) The "anti-vaccine" contingent is simply a code for autism parents. When she and other vaccine safety defenders talk about anti-vaccine persons, when they attack or criticize them, they are simply attacking parents of autistic children.

2) More than just attacking the views of autism parents Dr. Hall makes it clear that, in her mind at least, the causes of autism disorders rest with the parents ... their genetic contributions, their actions, even their actions prior to pregnancy.  

Autism can not, in Harriet Hall's opinion, result from the contributions of vaccines, the pharmaceutical companies that manufacture them, the doctors who inject them into patients, including pregnant women, the manufacturers of jewelry, children's toys and common household items containing mercury, lead, arsenic, or any other known environmental contaminants in our air or water supplies. 

No, what Dr. Harriet Hall has been quite honest about, to her credit,  is the need of many medical professionals to blame parents in the vaccine autism debates and deter any further investigation of possible vaccine autism connections. 

Monday, June 27, 2011

Blaming Parents: Autism Families Torn Apart by Ignorance

Families with autistic children, parents who love their autistic children dearly,  must endure much in order to live a normal life with their children, to be happy with their children to see them grow and develop to the best of their abilities notwithstanding their disabilities.  The concerns and challenges of parents of autistic children are often dismissed contemptuously by scientists, health care professionals, educators, social workers ... and some involved with the justice system. 

Last week the world learned that a caring British Columbia single father lost his autistic daughter to that province's children's authorities, at least temporarily, because she had left the home unattended and wandered to a nearby home where she stayed for a couple of hours. The father had taken precautions to prevent such incidents and had run to look for her when he realized she had left the home. He called police and she was found safe and sound but still the government took his child apparently because they doubted his ability to provide her with secure care.   

The Detroit Free Press has been reporting extensively (12, 3, 4, 5, 6 ) on the havoc wreaked upon a Michigan family, the Wendrow family,  when the parents were charged with sexually abusing their severely autistic and mute daughter. The evidence was provided by a social worker who purportedly communicated with the daughter via facilitated communication a process which in this case involved the worker guiding the child's hand as part of the "communication" process. The case imploded when the child could not answer ANY questions, in any format, unassisted. It became obvious that the information purportedly communicated by the daughter was simply the beliefs of the social worker not the allegedly abused daughter. The parents did spend time in jail and the family, including the daughter, were separated. What I find most bizarre and disturbing  in this case though is how far the prosecution continued without any apparent legal foundation:

"Julian and Thal Wendrow were criminally charged in late 2007 after their 14-year-old autistic and mute daughter alleged, through facilitated communication, that her father had been sexually abusing her. They were separated from their children for 106 days, until prosecutors dropped the case because of lack of evidence.


The ordeal didn't end when it was clear that the girl wasn't communicating, after all. It didn't end when a sexual assault exam found no proof of abuse. And it didn't end when a prosecution witness insisted the abuse never happened."

TIME has reported on the six part investigative series by the Detroit Free Press and noted in its own commentary about facilitated communication generally, and the horrendous impact on a family of its use in this criminal prosecution of the father for allegedly raping his autistic daughter, that:

"the technique, in which the aide's hand is supposedly guided by the child to type what she wants to say, has been proved ineffective. It has been shown to rely on the aide's projections rather than to reflect the child's thoughts. Although some autistic children can learn to communicate genuinely via a keyboard with only initial guidance, facilitated communication, in which an aide always does the typing has repeatedly failed to demonstrate that the words are written or thought by the child. For example, when the facilitator is not allowed to hear the questions being asked of the child, the resulting answers are wrong or nonsensical.

When the Wendrow's daughter's aide typed allegations of sexual abuse against the girl's father and brother — and claimed that the child's mother had been ignoring her complaints — a prosecution of the family was set into motion that became nearly unstoppable. The aide refused to believe she was not typing her own ideas, even though the child was clearly not capable of the complex language being attributed to her. Once prosecutors and the aide became convinced of the truth of the allegations, even overwhelming evidence of their falsehood was ignored."

Parents of autistic children face many challenges trying to raise and care for their autistic children. Most of us  face some of those challenges .. the stares and looks from strangers who do not understand the screaming of the "obviously spoiled" child in the grocery store, the educators and doctors who ignore the input of parents.  Some face the grief a father is going through right now in British Columbia.  Few of us face the horror of a wrongful criminal prosecution as the Wendrow family has had to endure; or the after effects they will probably have to continue to face.  Behind it all though is a common thread, a thread that goes back to the "refrigerator mothers" theory of autism causation that was embraced so willingly by the psychology and psychiatry establishments, to that theory's politically correct replacement - the "it's gotta be genetic" theory of autism causation. It is easy to find fault, to blame parents, for the challenges faced by their autistic children who suffer from serious neurological disorders ... who suffer from autism spectrum disorders. 

As a father with a severely autistic son,  who happens to also be a lawyer,  I commend the defense team that represented the Wendrows throughout the criminal prosecution.  I commend the Detroit Free Press for bringing this story to the forefront when so many in the mainstream media refuse to comment on the harsher realities of autism disorders and their impacts on families.  Most of all I commend the Wendrow family for staying strong, for fighting the good fight.  I wish them well.

Kim Oakley: Medical mysteries, autism and chronic self-injurious behavior

One of the blogs I follow,  and list on the side bar of this blog, is Autism, Epilepsy and Self-Injurious Behavior by Kim Oakley. A couple of days ago Kim Oakley wrote on the subject of Medical mysteries, autism and chronic self-injurious behavior. As is always the case Ms Oakley writes with straight up honesty and with a view to understanding and helping her son, and others,  who engage in self-injurious behavior.  In this comment Oakley describes some of her son's self-injurious behavior, in what contexts it arises and how long the last episode lasted:  4 days.

Obviously 4 days is a long time.  My son's self-injurious behavior has never lasted more than half an hour to an hour to  my knowledge.  I can't imagine 4 days of self injury, the pain it must have inflicted on her son or the courage Oakley and her family needed over those 4 days. Oakley isn't sure what caused the 4 day self-injurious "bender" to suddenly stop but she offers some speculation about what brought it to an end.  

I recommend anyone struggling with self-injurious behavior in an autistic child to read  Medical mysteries, autism and chronic self-injurious behavior. Oakley does not pretend to have all the answers but she gives us plenty to think about.    Once again, I recommend anyone with a child with autism who engages in self-injurious behavior to visit and bookmark Autism, Epilepsy and Self-Injurious Behavior by Kim Oakley.  It might provide one more piece of information to help you understand the mystery of chronic self-injurious behavior of your autistic child.

Saturday, June 25, 2011

TAKEN: BC Government Takes Autistic Girl From Caring Dad

Derek Hoare shows a picture of himself with his daughter Ayn in happier times
John Van Putten Photo

The British Columbia government,  Ministry of Children and Family Development, has taken an autistic girl from her father's care after she went missing, very briefly, and was found safe at the nearby home of a neighbor. The father is on social assistance and had care of two autistic children, with the agreement of his wife.  He is described in the Adrian MacNair - Abbotsford  News report on  as a caring father.  

I felt a real chill reading this article and the father's description of his discovery that his daughter had gone missing. I felt that chill, in large part, because years ago my son Conor went missing on my watch and I reacted much as the father did in this case,  running around looking for him, then calling police. In my case my son was safe and sound in the neighborhood, at a local convenience store.  In Mr. Hoare's case his daughter was also safe and sound, at a neighbor's pool just two houses away.  In my case I recovered my son without further ado.  In Mr. Hoare's case the BC government took his daughter away from him as he describes:

 "More than three hours later, Ayn was found two houses over in a neighbour’s pool. She was safe and sound. It was a fairy tale ending, told by various media covering the story. And for a moment, it was.When the police brought Ayn back, she ran to her father and threw her arms around his shoulders as he breathed tearful relief. But four days later, representatives from the Ministry of Children and Family Development came to his house with orders to take Ayn away.

“Basically, what they’re saying is I’m a single dad and I have two autistic kids and my other son and it’s too much for me to handle. So, they’re going to take one of my kids away to lighten my load,” said Derek on Tuesday, after learning he wouldn’t even be able to see his daughter until a hearing determines access rights.

Because of her 24-hour care requirements, she won’t go into a foster home, but will be placed in a psychiatric facility for evaluation.Derek is concerned she will be sedated and drugged for her autism, which he has always opposed, despite doctor advice to the contrary.“They’re probably holding her down and sedating her,” he said, his voice choking. “This is a nightmare.”A single father on social assistance, Derek said he has custody of his three children with the approval of ex-wife Amie Van Dyk."

The BC Local News article goes on to describe the steps that the dad had taken to provide a safe environment for his autistic children.  When my son went missing we did call a behavior consultant who was already working with Conor and she designed some programs to encourage him to stay in our yard.  Even with that training though Conor, like Derek Hoare's daughter, requires 24-7 supervision. 

I hope that the BC Ministry of Children and Social Development does not keep this father and his daughter apart. I hope they work with him and provide help for his daughter.  Government's should not be punishing the father ... or his daughter ... because they face serious challenges arising from her autism disorder. They should work WITH the father ... not AGAINST him and not against his daughter's right to live with a caring parent.  A caring parent is an important asset for any child, including and perhaps especially, a child with a severe autism disorder.  It is an asset that should not be lightly squandered and taken away by government officials.

Friday, June 24, 2011

Autism Research: Which "Autism" Is Being Studied?

Neuron, Cover Page, 23 June, 2011 Volume 70, Issue 6

The abstract for the study Disrupted Neural Synchronization in Toddlers with Autism,  reported in the current issue of Neuron, indicates that autism is tied to disrupted cortical synchronization, weak "functional connectivity" across two hemispheres of the brain:

" we show that disrupted synchronization is evident in the spontaneous cortical activity of naturally sleeping toddlers with autism, but not in toddlers with language delay or typical development. Toddlers with autism exhibited significantly weaker interhemispheric synchronization (i.e., weak “functional connectivity” across the two hemispheres) in putative language areas. The strength of synchronization was positively correlated with verbal ability and negatively correlated with autism severity, and it enabled identification of the majority of autistic toddlers (72%) with high accuracy (84%). Disrupted cortical synchronization, therefore, appears to be a notable characteristic of autism neurophysiology that is evident at very early stages of autism development."

The abstract does not explain what is meant by "autism" for the purpose of the reported study. The DSM-IV does not list "autism" as a specific diagnostic label or category. It does list autistic disorder. Common usage refers to all of the Pervasive Developmental Disorders, including Asperger's Disorder as variations of "autism". It is very common for very high functioning persons with Asperger's Disorder to tell the world about their experiences as autistic persons. Some such as Ari Ne'eman, a very intelligent, articulate individual with the social skills to participate in IACC and government meetings, likes to declare to the world,  that "WE", referring to persons with "autism",  do not want to be cured of their autism.  The DSM-5 will expressly merge the various "autism" disorders into one Autism Spectrum Disorder. 

It is not clear to me what is meant by the term "autism" in this abstract study.  Is it Autistic Disorder in the DSM-IV? Is it the PDD's in the DSM-IV all of which are now referred to as autism in common usage? Is it the Autism Spectrum Disorder of the DSM-5? Does the term autism as used in this study exclude persons with autism who are also intellectually disabled as the DSM-5 definition appears to do?

If anyone has read the full study report could they indicate how autism is being used in this study? Do the subject toddlers have Autistic Disorder in the DSM-IV, all of the PDD's of the DSM-IV, or Autism Spectrum Disorder from the DSM-5? Were potential subjects with "autism" and intellectual disability excluded?

The media coverage (1, 2, 3, 4) of this study also refers generically to "autism" without indicating which autism is being studied, a piece of information that I would think is fundamentally important to understanding the study's conclusions.

Wednesday, June 22, 2011

CBC: New Brunswick Lacks Residential Care for Adults with Autism

Emma Smith and CBC did a feature (at minute 23:40)  on last evening's news on the lack of residential care available for New Brunswick adults with autism.  I was interviewed along with some other parents and staff from the Autism Connections Fredericton community autism centre.  Paul McDonnell, Ph. D., UNB Professor Emeritus (Psychology), clinical psychologist and mentor to many parents of autism children, was also interviewed.  

Paul McDonnell is the autism expert who helped educate many parents of newly diagnosed autistic children, including me, about the benefits of evidence based interventions for our children.  He really has been the intellectual force behind the progress that New Brunswick has made in early intervention and education of NB children and students with autism.  While the progress in early education in particular, and in our schools to a lesser extent, has been significant, no progress whatsoever has been made in developing an appropriate residential care system for New Brunswick adults with autism disorders.  Paul McDonnell talks about the need for a high end facility, one which would incorporate a variety of arrangements to accommodate adults from different points on the autism spectrum.  He also points out that as much as $500,000.00 a year is being spent to provide care for just 1 New Brunswick adult with autism ... at the Spurwink facility in Maine.  He points out it would make economic sense to design and construct a facility which could be designed to provide community integration here in New Brunswick. 

The struggle for improved autism services in NB has been taking place in a serious fashion over the last 12 years. During that time activist parents advocated, argued, struggled and fought for evidence based early intervention for autistic children.  We had some success, albeit not total success, in obtaining 20 hours of government funded intervention for autistic children aged 2-5.  Some gains have been made in our schools although much, much more effort is need there. No progress though has been made for adults with autism in New Brunswick. 

Government drags its feet on adult autistic care for a number of reasons.  In my experience as an autism advocate it is easier to get public attention for the need to help children then it is to attract their concern over autistic adults. It seems to be a natural inclination for people to be stirred more easily to help children than adults.  There is also the fact that once in the care of government autistic adults are out of the public eye. Out of sight, out of mind. The government can, and will, cite privacy reasons of the autistic adult as a reason for refusing to disclose information about them.  The most extreme examples of the privacy issue being used in this way is taking place right now in Ontario where that government has sent its lawyers in to action to prevent disclosure of information in the two inquests, including the Ashley Smith and G. A.  inquests.  In those cases the government is arguing against disclosure of information about what happened to these two youths, purportedly to protect their privacy,  even though they are now dead. 

In New Brunswick a huge obstacle to development of an autism specific residential care and treatment facility is the opposition of the very influential NB Association for Community Living.  Community living cliches are pulled out at every discussion of adult care issues. "No bricks and mortar" solutions is the cry of the community living advocates who believe that all problems are solved by dumping adults, including severely autistic adults, into privately owned group homes.  The powerful and influential people who subscribe to this ideology are well connected to cabinet ministers, the Human Rights Commission, the department of education, schools and school districts,  even the Ombudsman and Youth Advocates office. As long as we all go to bed at night repeating "community", "inclusion" and other cliches over and over again until we fall asleep all will be well.  But there will be no talk of "institutions' ... or any other facility that might be needed to help autistic adults.

No serious thought is given to providing the residential care and treatment that many with autism will require throughout their adult years. In fact active resistance emerges at events like the Ombudsman and Youth Advocate office's recent  Complex Needs consultations, in which I participated,  to any discussion of a facility that might provide the expertise, security and access to autism specific programs required by autistic adults.  

It is not cash that is preventing adequate residential care for autistic adults in New Brunswick. Huge sums are being sent to export our autistic adults to the United States. The "bricks and mortar" of buildings that might be necessary to provide residential care and treatment are not the problem either.  The real problem is the "bricks and mortar" that encases the thinking of the community living adherents who have subscribed to the same  ideology for decades and refused to consider the needs of severely autistic adults.  Their philosophy has ruled New Brunswick with an iron fist for decades even though the failure of that rigid philosophy is evidenced by the people with autism living on general hospital wards, in psychiatric institutions, in specialized facilities in Maine and other provinces, in hotel rooms and even on the grounds of youth correctional facilities. 

In truth we all want our children to remain as integrated as possible in our communities, as close as possible to our families.  As a parent though I know that talking about community and inclusion does not address the need of some autistic adults for expert care, for expert based continuing education and recreation opportunities and for security.  These requirements, for some, can not be provided in a small, privately owned group home. We need a facility close to autism expertise such as exists at UNB and at the Stan Cassidy Centre to provide appropriate life arrangements for our autistic loved ones as adults.   

The need is painfully obvious to parents who see their adult children sent to live in general hospital wards, psychiatric hospitals .... and facilities in another country.  New Brunswick needs to fill the gap between the inadequate group homes and hospital institutions and provide a modernized autism  facility to accommodate the needs of out adults with autism.  Here in Fredericton we have developed some behaviorally based autism expertise of note. It is time for the community living adherents who are so influential in our government institutions in New Brunswick to let go of their rigid and dated perspectives,  to loosen up and let the needs of autistic adults be addressed with modern evidence based solutions, with facilities that can provide security, expertise, education and recreation in as community integrated a manner as the circumstances served by those facilities  permit.  

Sunday, June 19, 2011

Autism's Compelling Question: What is Causing Spontaneous Mutations Linked to Autism?

"One compelling question is what is causing the mutations ... The obvious conclusion one has to reach is that something environmental may well be the cause of these [spontaneous] changes in DNA"

Irva Hertz-Picciotto, autism researcher and professor of public health science at UC Davis, commenting on studies led by Matthew W. State and  Michael Wigler, showing hundreds of spontaneous mutations linked to autism, LA Times, June 9, 2011 

The gene environment interaction (GEI)  model of autism causation has been emerging over the past half dozen years. Even this humble layperson has noted the GEI model on several occasions on this blog. The "it's gotta be genetic" (IGBG) model was noted over a decade ago by Teresa Binstock. The GEI model has developed despite, or perhaps more accurately because of, the almost exclusive dedication of research dollars to  the  "it's gotta be genetic" (IGBG) model of autism causation. 

It is the failure of the pure genetic research to identify a specific genetic basis for  autism that only now is beginning to cause its adherents to doubt their faith.  It is the failure of the pure genetic model to explain autism causation beyond the existence of hundreds of spontaneous mutations that must finally make even the most determined of the IGBG school of autism causation ask ... could environmental factors be involved?  Spontaneous mutation is giving rise to spontaneous combustion as the purely genetic model of autism causation burns in the flames of failure.

Autism's most compelling question, as stated by Hertz-Picciotto: What is causing the spontaneous mutations?

Saturday, June 18, 2011

Autism and Haircuts: Conor Has A Great Haircut Treat Adventure

Above: Conor after this morning's haircut.

Below: Conor before this morning's haircut.

Conor has full blown Autistic Disorder with profound developmental delays. Haircuts were a real challenge at one time.  But things have improved dramatically with time, effort, planning and education.Today was a great haircut day for Conor with very little difficulty and he is much more comfortable with much of his thick hair laying in piles around the barber chair.  

I thought I would share some of our approach for those who are looking for ideas; things that have helped us with Conor:

1. Pick a spot which has less traffic and noise for your child's haircut.
2. Pick a time when there will be less traffic. For us it is 9 am Saturday morning.
3. Find someone to cut your child's hair who has patience, understanding, empathy and willingness to take her/his time, using scissors as much as possible, and, as much as possible, without electric buzzing clippers.
4. Stick with the same person, place and time for the haircuts as much as possible.
5. Tell your child beforehand that they will be going for a haircut in a day or two, so that it is not a surprise for them.
6. Have mom  or dad close by ready to hold their hand and talk to them.
7. Distract them if necessary with verbal games eg having them count by 10's, 5's, 2's etc, or sing songs.
8. Bribe them. Tell them they are going on a haircut treat adventure with the treat following the haircut.
9. Tell them what a great job they are doing, what a great boy/girl they are as they are getting their hair cut.

These are some of the things that have worked for us.  Each time Conor gets a haircut with minimal fuss it is in itself a form of reward that should make it easier the next time.  Maybe some autistic children don't need special efforts by their parents and power to them and their families. If you do you may want to consider these suggestions ... if you haven't already.

(Yes, I bribed Conor today too, with a trip to McDonald's for some hash browns, which Dad also enjoys)

Friday, June 17, 2011

Edmonton Father Guilty of (Severely) Abusing Autistic Son

A 59 year old Edmonton father has been found guilty of abusing his autistic son. He was convicted of unlawful confinement, failing to provide the necessaries of life, assault with a weapon and assault. Alexandra Zabjek of the Edmonton Journal reports that the son's situation came to the attention of police when his two older sisters returned home to visit after having left the family home a few years earlier. They found him unresponsive, emaciated and chained in a room with a urine soaked mattress.
"Police officers, paramedics, and an emergency room doctor who treated the teenager told court during the trial that he looked "like a concentration camp victim."Court heard the teenager weighed 86 pounds when he arrived at the Glenrose Hospital for rehabilitation. He was five-feet, seven-inches tall. His muscles had atrophied, he suffered from bed sores, and his arms and legs were stuck in a curled-up position. He couldn't initially stand. The teenager gained 10 pounds in the five days immediately after he was taken into care, court heard."
The Edmonton Journal also reports that the man testified in his own defence and claimed that he locked his son in the room because of " episodes and reactions to his mother". The man also denied specific allegations brought by the sisters that he had hit his son with a coat hanger and a shoe. He testified the son received three meals a day. Obviously the son's condition was the most powerful evidence, evidence that spoke for itself, irrefutable evidence of abuse.
What the Edmonton Journal article does not mention is whether the man testified about why he and his wife  kept his autistic son in their home when they could not properly care for him.

Why keep their son in their home while he deteriorated in front of their eyes instead of asking the Province to take care of him or to provide help in taking care of him?

Thursday, June 16, 2011

Autism Functioning Levels Are Important, Reality Based Distinctions, It Is Time To STOP Pretending They Do Not Exist

There are people whose opinions about autism are sought out by members of the media who promote the falsehood that there is no such thing as people who are low-functioning. Those who promote this falsehood should STOP doing so and they should stop right now. They are causing harm. 

We do not do any favors for persons who are severely affected by disorders like autistic disorder, those who have serious intellectual deficits and lack the ability to function independently, by making statements denying that some persons with autism are low functioning because of their autism.  We are hurting them by denying their reality and by assigning blame to them and family members because they do not meet  the high standards of those less severely affected, if at all, by autism. Under the DSM5's new Autism Spectrum Disorder persons who lacks functioning deficits in everyday life activities should not receive a diagnosis  and should not be described as autistic. The proposed wording of the New Autism Spectrum Disorder, despite some questionable components, does make the functioning issue clear in Criterion D of the 4 mandatory criteria to meet an ASD diagnosis:

"D.         Symptoms together limit and impair everyday functioning."

The three categories in the New ASD are distinguished based on functioning levels:

"Level 1 Requiring Support

Level 2 Requiring Substantial Support 

Level 3 Requiring Very Substantial Support "

Being positive about facing challenges should not be taken to the extreme of denying that many people have disorders that in fact render them low functioning even to the extent of being dependent on the care of others in order to live. J E Robison, Alex Plank, Ari Ne'eman, Michelle Dawson and most, if any,  of the members of the Board of Directors of ASAN Inc. do not share the deficits, the low functioning levels, of the 80% of persons with Autistic Disorder (DSM-IV) who have intellectual disabilities.  These successful business people, college graduates, researchers and political participants, some who have sufficient communication skills and social abilities to be able to play in rock bands, find marriage partners, raise families, and participate in high level political and corporate environments do not share the challenges faced by the low functioning persons with autistic disorder whose realities they downplay or deny entirely.  The great irony is that it is on THE Spectrum, Autism Spectrum Disorder, where you find persons with an incredibly wide and disparate range of abilities, deficits and challenges that we are most likely to find people denying that functioning levels matter or even exist.

The attempt to deny the importance of different functioning levels among persons with Autism Spectrum Disorders should STOP right now.  It hurts those most severely affected by autism.

Wednesday, June 15, 2011

Here We Go Again: Citizenship and Immigration Canada Divides Family, Rules Son with Asperger's and Tourette's Medically Inadmissible

Here we go again. 

Nicholas Keung, immigration reporter with the Toronto Star reports that a Toronto family will be ripped apart by a Citizenship and Immigration Canada  ruling that University of Toronto professor Thomas Reynolds son Chris is is medically inadmissible to Canada and therefore ineligible to stay with his father because of his Asperger's Disorder and Tourettes disorders. As reported by Nicholas Keung:
"Born in Nashville, Tenn., Chris, an American citizen, has lived in Toronto since 2007, with his expatriate father, a tenured theology professor at the University of Toronto’s Emmanuel College, and younger brother, Evan, 17, who is still in high school — both here on their father’s work permit. Shortly after arriving in Toronto, the family applied to immigrate from within Canada.

An early medical assessment by Citizenship and Immigration Canada concluded that Chris would place an “excessive demand” on health and social services, and hinder the family’s chances of being accepted.

Officials never met with Chris but deemed him “medically inadmissible” and estimated his care could cost Canadians $7,000 a year."

It remains to be seen whether people in Toronto and Ontario will exert the kind of pressure necessary to pressure politicians to take action to stop the division of this family.  New Brunswick is a small province where the Cheers refrain  "everybody knows your name" rings very true. Ontario, where I attended high school (Petawawa)  and Toronto, where I have previously worked and  lived are obviously much larger, urban and complex entities than New Brunswick.  Will the plight of one family facing division drive the good people of Ontario to take the intense, sustained action necessary to move politicians and bureaucrats to reverse this family dividing decision?  

Personally I hope so.  In the Reynolds case two sons have been living here for 4  years with their expatriate father who is a tenured professor of theology in Toronto.  I am very uncomfortable with Canada breaking up or exporting families solely because a family member has an autism spectrum diagnosis or any medical condition. There are differing opinions on these issues but I don't like it. To me it doesn't feel right. It doesn't feel Canadian. I am hoping for a Vancouver victory in the Stanley Cup Final tonight and I am hoping for a Reynolds family victory in their struggle to stay together. One family. In Canada.

Monday, June 13, 2011

Autism and Environmental Pollution: Review Shows Serious Study Needed

Judith Pinborough-Zimmerman, research assistant professor in the University of Utah’s Department of Psychiatry,  has called for more serious study of links between toxic pollution and autism spectrum disorders after a  preliminary review showed that children with autism spectrum disorders and other intellectual disabilities are more likely to have been born near industries that emit toxic chemicals or heavy metals. As reported by Heather May of Utah News the researchers found that children of mothers living within a mile of "Toxic Release Inventory" sites were were more likely to have autism spectrum disorders and intellectual disabilities:

"They found that children born to mothers who lived within a mile of what are called Toxic Release Inventory sites that emit certain chemicals and heavy metals were more likely to have those problems. TRI facilities release or dispose toxic chemicals regulated by the Environmental Protection Agency. The EPA maintains a database of all such facilities and the type and amount of chemicals they release.

• The risk of having an autism spectrum disorder was 3.5 times greater for children born within a mile of a site releasing between 5,000 and 10,000 pounds of halogenated chemicals (dioxins, polychlorinated biphenyls and trichloroethylene). There were five such TRI sites emitting at those levels in the mid-1990s.

• The risk of having an autism spectrum disorder was twice as big when living within a mile of one of six TRI sites emitting up to 5,000 pounds of the heavy metals arsenic, cadmium, lead, nickel and mercury."

To this lay person a finding that risk of autism spectrum disorders arises by 2 to 3.5 times with children born of mothers living near one of these pollution sites seems to be a very strong indicator of the need for further "serious" study as indicated by Assistant Professor Pinborough-Zimmerman.   We can always cling to the unproven assumption that autism has a 100% genetic basis and keep finding excuses for why autism rates continue to climb for a purely genetic disorder.  Or we could actually try to find out what has been happening to our children.

Saturday, June 11, 2011

Autism Services in New Brunswick: We Lack Any Real Adult Autism Residential Care

The Restigouche Regional Hospital in northwestern New Brunswick
is home for some of our adults with autism disorders

In Autism resources in N.B. are a 'patchwork system' Jacques Gallant of the Times & Transcript has reported on the state of autism services here in New Brunswick (Canada, not New Jersey).  As Mr. Gallant reports, our early autism intervention services have received justified praise and our schools have made significant progress although much improvement is needed especially in rural schools. I am interviewed and discuss, in particular, my concerns about the wholly inadequate state of adult autism specific residential care facilities in New Brunswick.  We have group homes with untrained staff who can't accommodate the most severely challenged autistic adults and we have psychiatric hospital in northern New Brunswick far from most of our population.  Other than that we have resorted to temporary housing in hotels, general hospital wards, youth prison grounds and shipping our autistic population out of the province and even out of the country to nearby Maine.  New Brunswick needs an autism specific residential care facility, based in Fredericton, close to the autism expertise that has been developed at the UNB-CEL Autism Intervention Training program and the Stan Cassidy Centre Autism team.  The center should have a variety of configurations and buildings to accommodate the differing needs of the range of autistic adults on the spectrum.  It should have the trained staff and quick access to the autism professionals in Fredericton to help provide continued adult education, recreation and life enjoyment opportunities for autistic adults in New Brunswick.  

Thursday, June 09, 2011

Maeng Family and Son with Autism Will Not be Deported from Canada!



The deportation order for the Maeng family of Moncton New Brunswick, Canada has been rescinded.  The family is no longer facing deportation because of their son's autism and epilepsy. The federal government rescinded the order after the Province of New Brunswick confirmed confirmed it will cover the health costs associated with the family's autistic son Sung-Joo Maeng 15. 

It feels good to be a New Brunswicker.  It feels good, once again, to be Canadian.  We have done the right thing by these good people. We have done the right thing for Sung-Joo Maeng.

Wednesday, June 08, 2011

Minister Jason Kenney In Response to Don Davies Question About Maeng Family Deportation

The Honourable Minister of Citizenship and Immigration Jason Kenney commented generally in reply to Vancouver Kingsway MP Don Davies' specific concerns about the Maeng family deportation.  The Maeng family has lived in NB for several years and have been valued contributing members to the local community. Their eldest son has done well in school and is studying to become a dentist.  Their younger son has autism and epilepsy and for this reason, years after the family arrived in Canada, and after disclosing the son's autism condition, Canada has ordered the entire family deported by the end of June.  Don Davies MP for Vancouver Kingsway, BRITISH COLUMBIA, questioned Minister Kenney and received this reply as reported in Hansard:

    Mr. Speaker, first of all I congratulate the member on his re-election and his appointment as the immigration critic for the official opposition.    The member knows that the minister cannot comment on particular cases because of the Privacy Act. Having said that, there is a very fair process, including access to applications for permanent residency for humanitarian and compassionate reasons by individuals. Those are not considered by elected officials but by highly trained public servants. I would point out that there is in our law provision for medical inadmissibility for those who the provinces deem would represent an undue burden to our tax-funded public health care system.

Tuesday, June 07, 2011

Don Davies, MP Vancouver Kingsway, Stands Up for Moncton's Maeng Family

Yes a member of Parliament has spoken up in the House of Commons on behalf of the Maeng family, the Korean family, residents of Moncton New Brunswick  for several years, and contributing members of that community, who are facing imminent deportation because their younger son has autism and epilepsy.  No it is not the Conservative Member of Parliament from Moncton,  Robert Goguen, who has made no public comment on the serious threat facing the Maeng family and their 15 year old autistic son. It was Vancouver Kingsway NDP MP Don Davies who asked the Minister of Citizenship and Immigration to review this troubling decision, a decision of which many Canadians are ashamed:

Mr. Don Davies (Vancouver Kingsway, NDP): Mr. Speaker, the people of Moncton are shocked to learn that some very respected members of their community are facing deportation.
    The Maeng family have put down firm roots since moving to Canada eight years ago. They have built their own business, and their eldest son is studying to become a dentist.
    However, despite having disclosed their younger son's health problems from the outset, they are now being told his autism and epilepsy disqualify them from permanent residency.
    Will the minister commit to reviewing this troubling decision on humanitarian and compassionate grounds?

It is encouraging to see a Member of Parliament standing up for the Maeng family.  It is sad though  that an MP from Canada's other coast has taken up their cause while local MP's remain silent.

Thank you Mr. Davies.

Monday, June 06, 2011

Study Finds Positive Association Between Autism and Vaccines

A  recent (Online publication date: 26 May 2011) study published in the Journal of Toxicology and Environmental Health reports ,as set out in the report title, that a positive association has been found between autism and vaccines: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population. The study abstract places the conclusion in the context of current thinking which sees autism as the interaction of genetic predispositions and environmental triggers.  It also identifies flaws in some of the major studies which are touted as "debunking" any possible autism vaccine connection.

The genetic-environmental model of autism causation does not appear to have broken through the rigid mindsets of  those who sek to discourage  any further investigation of possible autism vaccine connections, people like  Paul Offit, Bill Gates and Richard Gorski.  These attack dogs will undoubtedly bark and snarl at this study and attack personally anyone involved with it.

For people with open minds on this serious issue though the article abstract states:

"One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted."

This study, like all studies, including those that purport to "debunk" any autism vaccine connections will, and should, be given close examination, and criticism, if warranted.  Hopefully reviews of this study will be conducted by serious, objective scientists and not just those with a "defend vaccines at all costs" agenda.  That, of course, is a very faint hope.  Paul Offit and his followers have doubled down on the irrational strategy of personally attacking parents, and researchers, concerned about possible role of vaccines and vaccine ingredients in triggering autism and other neurological disorders in children instead of continuing calmly with objective examination of their concerns.  

Saturday, June 04, 2011

Woe Canada! More Canadian Shame as South Korean Family In Moncton Forced to Leave Canada Because of Son's Autism and Epilepsy


Canada's shameful and dishonorable conduct towards families and children with autism and other disabilities continues with the forced expulsion of a South Korean family because one of their son's suffers from autism and eplipsy.  The family operates a business in downtown Moncton New Brunswick and the oldest son has, as reported in the Times & Transcript, graduated with honors and has gone on to Dalhousie University where he studies science and hopes to become a dentist:

"They came to Canada to seek a better life for their children, but now they're being told to leave because their youngest son's illness costs too much. They came to Canada to seek a better life for their children, but now they're being told to leave because their youngest son's illness costs too much. The Maeng family from South Korea moved to Moncton in 2003 and within a few years set up a business, The Main Stop Oriental Market on West Main Street. They care for their youngest boy, Sung-Joo, 15, who has been diagnosed with autism and epilepsy, while their older son, Jung-Joo, 19, has worked his way through school, graduating with honours from Harrison Trimble High School last year before moving on to Dalhousie University in Halifax.

Tae-Shik Maeng and mother Hee-Eun Jang, received a letter informing them that their family would have to leave Canada by June 30. The family's application to Citizenship and Immigration Canada (CIC) to extend their temporary resident permit (worker and student) was denied due to the medical and education expenses of Sung-Joo"

Shame on us Canada. 

Thursday, June 02, 2011

Metro - Vancouver : Video : No place to go: Caring for the mentally disabled

This heart wrenching video is the latest in a series by Michael Tutton of the CP exploring Canada's lack of decent, appropriate residential care for mentally disabled adults including people with autism disorders, downs and other intellectual disabilities.