Friday, August 30, 2013

New Brunswick is a Canadian (and North American) Leader In Early Autism Intervention and School Autism Services

New Brunswick is a Canadian, and North American,  leader in early autism intervention and school autism services.  I do not doubt that that statement is enough to prompt a retort from many jurisdictions.  New Brunswick is not one of the wealthiest jurisdictions in Canada, let alone North America, but the fact is that New Brunswick has had publicly provided early ABA autism intervention to the extent of 20 hours per week for ages 2-5 for several years.  700-800 education aides and resource teachers also  received the same UNB-CEL Autism Intervention training.  

These services have been provided by both Liberal and Conservative governments.  The drive to put these services in place resulted from intense, persistent and well organized parent advocacy.  Above all we had the advantage of guidance from local autism experts.  The UNB-CEL program that provided these autism services was able to do so in both of New Brunswick's official languages, French and English, even though the French language Universit√© de Moncton chose not to participate in developing the program.  Ultimately NB was recognized as a leader in provision of early intervention by Dr. David Celiberti of the Association for Science in Autism Treatment.  

Over the past year several international and local experts, listed in the attached letter from Nicole Gervais, Executive Director, have developed an on line program which has provided ABA based autism training to NB teachers and aides. They did so in conjunction with the NB government's new, combined Department of Education and Early Childhood Development. The predecessor Department of Education's officials had long felt that paying the UNB-CEL for the autism training was too expensive and were clearly annoyed that the program resulted from parent advocacy, professional advice and direct political initiative. Officials including the Director of Student Services moved to assert control over autism programs in the Education Department, even going so far as to threaten me with legal notice to stay out of a meeting between the Department and ASNB at which autism training was discussed. Nonetheless senior department officials essentially claimed ownership of the program developed by UNB-CEL and have, over the past year, developed the in house departmental training program described in Ms Gervais letter:

I am very impressed with both the international and local autism expertise involved with developing the program and I have to believe that this program will bode well for New Brunswick children and youth with autism spectrum disorders. Many of the concerns which I raised in a  recent letter to NB autism officials, and raised several years ago, as an Autism Society New Brunswick representative, when advocating for provision of UNB-CEL autism training for resource teachers and aides are dealt with in this program as described. Given the recognized expertise of those who developed the UNB-CEL program further I am certain that the program itself will be excellent.  

I am much less assured though by the in house elements of the program, particularly the evaluation of the candidates practicum completion, in the context of a collective bargaining environment where the parties conducting the evaluations are representatives of the employer in the collective bargaining relationships with NBTA and CUPE Local 2745 representing the teachers and aides respectively.  I have 30 years experience as a labour lawyer in New Brunswick and federally. I have also been very active as an ASNB representative on autism education issues over the past dozen years. On these issues I do not defer to the Department autism experts or to their in house legal advisers.  There will be grievances filed if any aides or teachers fail their evaluations with resulting pressures on those conducting the evaluations.

CUPE Local 2745 in particular has been averse to even supporting autism training for the aides they represent for fear that older aides would be unable to complete training and their ability to utilize their seniority for preferred assignments would be compromised.  As an ASNB president I had invited and met with the then CUPE Local 2745 President to discuss autism training for TA's (Education Aides) at a breakfast meeting at Bolden's Cafe in Fredericton.   She was totally disinterested in my suggestion that CUPE support parents in advocating for autism training for teachers and education aides.  Her successor, the current CUPE Local 2745 President, Sandy Harding, has been much more openly hostile to our efforts advocating for autism trained education aides in their bargaining unit. 

Notwithstanding my concerns over the in house elements of the program I do recognize the considerable expertise both of the international and the local experts involved in the development of the program and that expertise bodes well for New Brunswick children and students ... particularly if the Department officials have the will to properly evaluate those who take the training.  If education officials can stand up to CUPE 2745 pressure and provide honest, accurate evaluations of autism course participants New Brunswick will continue as a North American leader providing early autism intervention and autism school services to ALL students not just those who can afford specialized instruction or live in Fredericton where evidence based intervention and autism instruction have historically been embraced.

Tuesday, August 27, 2013

2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program

The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

Saturday, August 24, 2013

Hemispherectomy: Cut My Son's Brain In Half? No Way .... Unless

I am not a neurologist, neurosurgeon or medical doctor of any kind.  I am not a psychologist or a certified behavior analyst.  I am a lawyer and a father of two sons one of whom has a severe autism disorder, profound developmental delays and ... in recent years has suffered a number of seizures including absence seizures and grand mal or tonic-clonic seizures.  He also suffered a life threatening adverse reaction to one of his anti-seizure medications.

With all that I can still not even begin to contemplate, with all the debates and lack of scientific confirmation of cause or cure that exists in the autism literature I have read over the past 15 years, the thought of surgeons cutting my son's brain in half. I am absolutely NOT second guessing the parents who have approved such surgery for their children.  I assume their children's seizures are much worse and much more frequent than what my son has endured. I believe the process is a last resort and is considered when severe seizures are identified as resulting from a specific location in one hemisphere of the brain. To those whose children have received a hemispherectomy I wish their children continued and total recovery and life improvement.

Apart from the kick to the groin that results from even contemplating such a remedy I am unsure from what I have read that the science of this radical procedure is solid.  I am aware that there are reported instances of success, and confirming studies,  as set out in the NBC News article "Taking out half a kid's brain can be best option to stop seizures, research confirms".  On the other hand there are also doubts about the process as set out in the Medpage Today article "Outcomes Mixed for Brain Surgery in Epilepsy".

I am not pretending to have any expertise whatsoever in assessing this medical procedure to deal with epilepsy.  I have advocated for many years for evidence based interventions for autism disorders because of my son's autism and have looked for the most authoritative guidance from genuine autism experts to do so.  I am simply trying to come to an understanding of epileptic seizures and possible treatments and came across this information about Hemispherectomy, literally surgery to remove half of a child's brain.  As a reader can probably tell, I am surprised, very surprised that such a procedure exists today and I understand that other people have faced these serious challenges before with the guidance of medical experts.  

If my son's condition worsens perhaps I would have to get over it and contemplate this option. Right now all I can say is no way! But .... I know I have probably not seen my son endure what other parents have seen their children endure.  I hope I am never forced by circumstances to make such a decision in my son's case and I admire the love for their children and the courage of the parents who have had to make such decisions. 

The Hemispherectomy Foundation web site is available to provide the information, child and family impact stories, and balanced perspective that are lacking in my emotional reaction to learning of this process. Personally I will continue to read more on this important subject.  If the day ever arrives that this procedure is recommended and necessary to help my son ... I hope the science is clear and I hope I have the courage to proceed with his best interests in mind.

Friday, August 23, 2013

Children's Hospital of Eastern Ontario (CHEO) Writes Off Child With Autism AND Global Developmental Delay (Intellectual Disability)

CHEO: No Teddy Bears & No Autism Program 
for Severely Challenged Children 

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

Tuesday, August 20, 2013

SFARI Highlights Serious Risk of Epilepsy for Teens with Autism and Intellectual Disability

"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent.
The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."
SFARI (Simons Foundation Autism Research Initiative), Risk of epilepsy in autism tied to age, intelligence, Laura Geggel, August 19, 2013

The information in the SFARI article above helps inform the public about a study and an issue of great importance, one that should be brought to the attention of parents, family doctors and pediatricians and clinical psychologists - the substantial numbers of persons with autism, intellectual disability, epilepsy. and the adolescent years during which many with autism and ID first endure epileptic seizures.

The study itself could be a capsule summary of my son's disorders during his first 17 years of life.  Diagnosed at age 2 (literally the day after his second birthday) , after several months of tests, Conor suffers from Intellectual Disability the ultimae taboo in autism world discussions.  Together autism and intellectual disability increase dramatically the chances of developing epilepsy.  As the article and study it reports indicate adolescence is an age when epilepsy appears for many with autism and intellectual disability.  That is exactly what happened with our son Conor.

Conor's first Grand Mal seizure, as I reported on November 17, 2012, (No Autism. Today, Conor's Grand Mal Seizure Scared The Hell Out Of Me) literally shook our world. We had reported what we thought were seizures to Conor's pediatrician 18-24 months before.  He would suddenly stare off looking away or close his eyes as though he was in pain. His pediatrician agreed they were probably seizures but indicated medication was probably not a good idea since there was no falling involved in his seizures.  On November 17 things changed dramatically with Conor's first Grand Mal.  He would later suffer a second Grand Mal,  and shortly thereafter a life threatening adverse medication reaction, which I have also reported on this blog.

Our experience led me to believe that pediatricians and other doctors, as well as clinical psychologists, should inform parents and advise them to be on the look out for the development of seizure activity in their autistic children.  Hopefully this major study reported by SFARI and the prestige of the Simons Foundation Autism Research Initiative will encourage professionals  to inform and educate parents of autistic children particularly those with intellectual disability to be on the lookout for seizure activity and how to recognize them.  They may also want to direct them to Silently Seizing written by Caren Haines, RN and mother of an autistic son who suffered from seizures.  The book pulls no punches in talking about the damage that can occur  from seizures and would be an honest introduction to the seizure activity and its risks. 

Saturday, August 17, 2013

You Can Help the Chalmers Hospital ICU Save Lives!

The Intensive Care Unit (ICU) at Fredericton's Chalmers hospital saves lives even with vitally important monitoring equipment that is more than 10 years old.  We found out first hand how important the ICU is when our son Conor spent 6 days at the ICU with a life threatening adverse medication reaction:

Conor during his 6 day stay in the ICU

Conor, in full recovery mode, 3 months after leaving the Chalmers ICU

I understand that the Chalmers Foundation hopes to meet their target for purchasing the new monitoring equipment by the end of August.  

If you are interested in helping the ICU save lives visit the Chalmers Foundation current project page - ICU Making a Difference and contribute towards purchasing new monitoring equipment for the ICU.  

Wednesday, August 14, 2013

Autism Breakthrough? Autism Speaks Recognizes Autism Heterogeneity!

Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.

In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

"Rather than one disease, autism is now regarded as a collection of conditions with similar traits but different causes, Rosanoff says. People on the autism spectrum are extremely diverse. Some are non-verbal and profoundly disabled; others have successful careers, particularly in science and technology, describing themselves as different, rather than disabled. "Autism is so heterogeneous," Rosanoff says. "We're never going to get to the one cause.""

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 

Saturday, August 10, 2013

OTARC Panel: Dr. Giacomo Vivanti: Does Severe Autism Cause Intellectual Disability?

Excellent panel discussion by the La Trobe University Olga Tennison Autism Research Centre (OTARC) with Dr. Giacomo Vivanti, Dr. Cheryl Dissanjake and Dr. Cynthia Zierhut.  The panel comments on the cultural representation of autism as genius in movies such as Rain Man and television series such as the Big Bang theory. Dr. Vivanti talks about autism research tendency to focus on high functioning autism perceived by many autism researchers to constitute "pure" autism research.  He calls this bias into question as non evidence based,  circular reasoning. There is no legitimate basis to separate autism and intellectual disability as "comorbidity".  

Dr. Vivanti's recent paper, Intellectual development in autism spectrum disorders: new insights from longitudinal studies,  has looked at the possibility that severe autism itself causes intellectual disability an hypothesis which itself is controversial.