“Full-inclusive” proponents ignoring evidence & human rights of severely autistic students

Inclusive education where possible but not always.

It sounds counter-intuitive that “mainstreaming,” or “fully inclusive” education could harm a child or youth with special needs. But it definitely can and that it can is not a new idea.

Back in 1984, I wrote a peer-reviewed article for publication in Education Canada about just that potential problem. At that time, I was teaching university education courses, as well as operating a special education private practice.

Since part of my practice was acting as an advocate for parents trying to navigate the Ontario school system, I knew what problems they were having and those problems were at opposite ends of the issue.

For example, on the one hand, some parents wanted their children, particularly if they had physical, learning or intellectual disabilities without any behavioural problems, put into the regular stream.  So, I would help them get their children placed in the most acceptable regular classroom environment possible.  

But, on the other hand, there was a small number of parents who wanted their child left in or placed in a segregated environment based on specific diagnostic criteria, what is now referred to as a research “evidence-based intervention” approach to determining a school placement.   In the 1980s, that kind of placement was possible but by the 1990s, they were nearly non-existent.

However, in the Niagara Region where I live, there was the Niagara Children’s Centre, which continues to this day. So, while there can be huge waiting lists, an evidence-based environment is possible in our neck of the woods. Others parts of Ontario and Canada may not be so lucky. For example, the Thistletown Regional Centre is about to be closed down by the McGuinty Liberal Government in Ontario –with claims that parents can find similar services in their own communities — which is absolute nonsense.

Suffice to say that over the years, exclusive or segregated classrooms have all but disappeared. Why the one-sized fits all approach? In my opinion, it’s all about money and government priorities.

Just as Thistletown is being closed down in the near future, Ontario is spending huge amounts of money subsidizing private wind developers. And, just like when hospital beds or even hospitals are closed,  provincial governments continue to have the gall to say they are doing it to improve services.  

Anyway, it was with a heavy heart today, that I visited Harold Doherty’s website called “Facing Autism in N.B” and listened to his radio interview about how New Brunswick is trying to go to the “full inclusiveness” model at the expense of the needs of students like his son, Conor, who is at the severe end of the autism spectrum.

So, I recommend readers visit Doherty’s blog to listen for themselves. Simply click on the link and then wait a few seconds and the audio will come up. I have no doubt that Mr. Gordon Porter and the N.B. Association for Community Living have only the most honourable reasons for pushing “full inclusiveness.”

But they need to step outside their philosophical comfort zone and realize what it is like for parents who have children or youth who simply can’t manage in a regular classroom environment, regardless of the number of accommodations, enhancements, social workers or teaching assistants.

As Doherty suggests, insisting on full inclusiveness as opposed to making decisions based on verifiable diagnostic evidence is actually flouting the human rights of severely autistic students — something school boards and school districts across Canada need to consider.

McGuinty closing Thistletown mental health to waste $1.1 billion on wind

When it comes to government priorities, actions speak louder than words. The Dalton McGuinty Liberal government says they care about the most vulnerable in our society.

Yet, while they are willing to  spend $1.1 billion dollars a year on the Ontario FIT (Feed-in-Tariff) program and other green energy subsidies for wind and solar energy that are unsustainable (according to the Fraser Institute), they are “not” willing to spend the money needed to keep the Thistletown Regional Centre in Etobicoke open — where the most vulnerable go for help.

In terms of the FIT program and green subsidies, that money spent simply goes to private wind investors and energy demands seldom match availability. In other words, most of the money spent is money down the drain.

Click on image for thistletown.net

Yet, in terms of Thistletown, the money goes towards mental health treatments and services for children and youth, including those with autism, education programs and research not done anywhere else. A direct correlation? Perhaps not. But, an example of the McGuinty government’s priorities? Absolutely.

Think about it. The Ontario Government has a huge deficit which continues to grow. Yet, they plan to keep on spending money that is based on an approach to green energy that is failing everywhere in the world it has been tried.  And, Ontarians are fighting back as today’s FIT protest indicates. (For photos of that protest, see the blog Quixote’s Last Stand).   Not only that, Canada is now before the WTO having to defend the indefensible subsidies.  Check out ontario-wind-resistance.org for that story.

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Survey to measure impact of bullying on children & youth with autism

Laura Shumaker, an autism advocate, writes that the Interactive Autism Network (IAN) has launched a national survey to find out the prevalence and impact of bullying on students with an autism spectrum disorder (ASD). The survey, for those living in the United States or its territories, is a good thing and I would highly recommend parents go to the IAN site and complete the survey.

As many regular readers know, my son has an ASD and, although now in his forties, was bullied all through public school, whether he was in a regular or segregated class.  In fact, I remember all too well the day he came home from school in Grade 7 covered in blood — an experiment in regular classroom integration that went very badly. For months, we had arranged for an older youth to accompany him to and from school. But, one day unknown to us, that young person was not available. So, when our son arrived home at the end of that particular day he was covered with blood and bruises and screaming uncontrollably — as a result of two very mean bullies.

While our son was not seriously injured physically, he was emotionally since he knew who the bullies were. So, he begged us not to make him go back to that school. My husband and I talked to school officials but they claimed they could do nothing beyond school property. In the end, our only realistic option was to have him bussed to a special education class farther away from home. Meaning, as happens in far too many bullying incidents, the bullies got away with their anti-social behaviour and the victim was the one who had to change schools.

I suspect that the IAN study will find that most, if not all, young people with an ASD will have been bullied at one time or another because they are “different.” Why, I don’t know because differences only make our world more interesting. But, I do know that our son was regularly called a “freak” and a “retard” — which he was not. Thank goodness there were no social media in those days or it would no doubt have been much worse.

In any event, school districts all over the U.S. and Canada (where I live) need to find ways to prevent bullying, as well as to hold those students (and perhaps even their parents) responsible for their anti-social words and actions! Unfortunately, however, that does not seem to be likely because of what appears to be a misguided belief that it is the bullies that need to be understood and protected.

Which prompts me to say that, even if bullies have an ASD, they need to be made aware their behaviour is wrong and their parents need to do something about it — even if it means they have to change schools or special education programs — thereby protecting both themselves and their victims.


Endnote: I hope the IAN survey provides a way for parents to identify, not only that their children with an ASD were bullied but if they were, in fact, ever bullies themselves. A politically charged issue? You bet. Particularly since most children and youth with an ASD are integrated into regular classrooms, no matter how severe their ASD symptoms. But, while accommodating all exceptionalities, we also have to ensure that all children have the right to a safe school environment.

Study claims preemies have a higher risk of autism

During the last couple of days, the media have been reporting that, according to a recent study, babies born prematurely (preemies) have a higher incidence of autism. The claim, published in the Journal of Pediatrics, and communcated by lead researcher, Jennifer Pinto-Martin of the University of Pennsylvania, is that five out of every one hundred babies born less than four and a half pounds were eventually diagnosed with autism.

My reaction? Is it the lower birth weight, the fact the babies were premature or some other variable, such as a lack of oxygen, that is the risk? As Dr. Karl Kuban, Chief of Pediatric Neurology at the Boston Medical Centre says: “Is it being born early that’s leading to the problem, or is it that being born early and having autism share a common risk? We don’t know.”

My own son, for example, who is now age 46, was nearly 9 pounds when he was born and nearly two weeks late. Plus, the birth process was traumatic for us both. And, yes, he has an autism spectrum disorder. So, was it the large birth weight, the fact that he was late or the difficult delivery. Or, was it none of the above and genetic? As Dr. Kuban says: “We don’t know.” As though parents of preemies don’t have enough to worry about!!

Endnote: Here is the latest issue of the Journal of Pediatrics which does not show the current study. In fact, even when I searched under the lead researcher’s name, all I could find was an article on this topic dated 1998. However, with a little digging, I was eventually able to find a link via ParentCentral.ca. Here, for example, is the study in question in the Journal of Pediatrics, a submision that was accepted by the Journal on July 20th, 2011.

Autism is treatable? More on ARI Conference at Las Vegas

As many autism activists know, there is a conference currently underway in Las Vegas (October 13-16). One of the main topics is that autism does not have to be a lifelong static disorder. Here are a few paragraphs from Market Watch:

As autism reaches epidemic proportions in the United States, science is challenging the traditional view of autism as a static, lifelong disorder. The Fall 2011 ARI Conference is a resource for parents, families, caregivers, educators, scientists, healthcare practitioners and other experts who will share information aimed at improving the quality of life for children and adults diagnosed with ASD, as well as that of their families.

‘ARI is committed to empowering the autism spectrum disorders (ASD) community with science-based solutions for treating autism,’ said Dr. Stephen M. Edelson, pioneer, researcher and director of the Autism Research Institute. ‘An appropriate medical approach, implementing dietary and lifestyle adjustments, is proven to have significant impact for many with ASD. In the context of a growing incidence of the disorder–and considering that the standard ASD treatment is pharmaceutical–favoring an encompassing medical approach cannot be overemphasized.'”

So, while the notion that some types of autism  spectrum disorders are treatable will no doubt be good news for many. For others, it could give false hope.  For example, my now 46 year-old son showed tremendous improvement in his 20s following a decade of behaviour modification and special diets, although his negative autism behaviours never completely disappeared — which explains why he was never able to keep a competitive job longer than a couple of weeks. However, in spite of being diagnosed with PDD-NOS (Pervasive Developmental Disorder), he is a very friendly and warm person by nature, although he still cannot be touched or hugged and his inability to perceive cause and effect has adversely affected his life, particularly when it comes to finances and understanding social cues.

Then, there is the hand flapping and hand biting. Not long ago he was watching a program on TV and got so excited that he wasn’t even aware that he was flapping one hand while biting the other. In fact, he bit the one hand so hard, he broke a front tooth, leaving only the root. Surgery was necessary to remove the root pieces of course, and we arranged for a partial. But, the hand biting was indicative that in his 40s, some of his earlier obsessive compulsive behaviours had returned.

However, the good news is that he is living independently with his wife (who has intellectual and physical disabilities) and with community supports they can cope. His wife is totally dependent on him (for grocery shopping, housework and taking her to medical appointments) and that seems to give him the stability he needs to go day-to-day. I still worry about when my husband and I are no longer here but are thankful that he now has a financial trustee and there is a dedicated community agency working with both of them.

In other words, while it is great news that some children and adults who have been diagnosed with an autism spectrum disorder can be helped with ongoing ABA treatment programs, exercise and vitamin regimes, it would be wrong to go back to the future — where the blame for autism-like behaviours is put on the parents — particularly the mother. Been there and experienced that in the late 1960s and know how very demoralizing that can be for all concerned.

Some parents have unrealistic expectations for autism funding

Yesterday I read that Nova Scotia’s NDP government was going to double funding for pre-school children diagnosed with a moderate to severe autism spectrum disorder — from $4 million to $8 million a year.  In my opinion, that is a good investment because research has proven that the earlier you get children into an ABA or alternative program, the more likely their social interaction and verbalization will improve. (See also the report on the Stanislaus Study.)

So, what was the reaction among parents who have children with the kind of autism that would benefit from such funding? As the Globe and Mail’s Corbett Hancey reports (my italics):

“Jenn Fancy de Mena, President of the Annapolis Valley Autism Support Team in Nova Scotia thinks the funding is a step in the right direction, but worries the decision ignores older children with autism. ‘I presume they’re operating from the belief that the younger the children get therapy the better it is,’ she said. ‘Unfortunately that leaves out a whole group of kids. My son gets no money and no treatment right now.’

Ms. Lanthier of Autism Speaks acknowledges that despite new funding announcements parents of children with autism will still be going into debt to pay for treatment. She said that even funding in British Columbia, where the government provides $22,000 per autistic child per year, is not enough. ‘If you’re talking about a really multi-disciplinary, comprehensive treatment plan that includes behavior modification, speech and language therapy, occupational therapy…you could be talking $60,000-$80,000 per year.'”

 A step in the right direction? From $60,000 to $80,000 per year per child? What on earth has happened to our society when parents expect taxpayers to provide that kind of money for each and every child diagnosed with an autism spectrum disorder? Of course they will go into debt. That is a given. Because, remember, government’s can be all things to all people. They have to prioritize and take care of all children with special needs. 

For example, what about the parents who have children with juvenile diabetes, Cerebral Palsy, Muscular Dystrophy, Attention deficit Disorder and intellectual disabilities, such as Downs Syndrome? I mean, there is only so much money in any one province’s health care and social services pots, and that money needs to be shared.  In other words, it’s not all about childhood autism treatment or it shouldn’t be because there is a whole lifetime to consider!  

My son was born 45 years ago. I knew something was wrong with him in the hospital because he couldn’t suck. Then, as as soon as he could stand, the hand flapping and hand biting started.  Yet, in spite of all the subsequent problems before and after he started school,  it wasn’t until he was fourteen years old that we were able to get him admitted to an Ontario residential treatment centre where he received behavior modification over a two-year period.

Prior to that time, as with all parents, we had to pay for whatever help we could find ourselves. We both worked. We did without. We remortgaged our home many times, which was made possible simply because real estate prices continued to rise through the 70s and 80s.

So, yes, I acknowledge the importance of government funding. But, I also know, from personal experience, that scarce resources must be spent in the most effective way possible. And if that is at the pre-school level, then that is where it should go. Because, there is going to come a time — at the other end of childhood and youth — where funding of a different nature will also be required, either for supports to live at home, supervised independent living in an apartment (which is the kind of funding support my son and daughter-in-law receive at the moment) or in a specialized group home.

So, while individuals with mild autism or Aspergers can live their lives like everyone else, those with moderate to severe autism usually cannot. It’s also about the types of long-term support individuals and their families are going to need. If provincial governments started allocating $80,000 a year towards treatment for one child, say from age three to age ten, there will be nothing left when they are twenty-three and they and their families need other equally important interventions. 

Something to think about.

Endnote: I would like to point out that there are many people with mild autism that don’t feel they need any kind of health care supports, ABA or otherwise. In fact, some individuals with Asperger’s, for example, are very high functioning and extremely creative individuals. The reality is, of course, that none of us are “normal” in that none of us are “perfect.”  We all think differently. We all use different learning strategies. Some of us like using maps. Some of us like using point form lists. Some of us wear glasses, some not. So, when I refer to an autism spectrum disorder or special need, I am talking about children and adults who are like my son, unable to work in a competitive job and require constant supervision in the context of daily living, particularly with money management. Fortunately for us, our son is now quite verbal and social. But, there are also children and adults who are not only non-verbal, but have severe intellectual disabilities combined with autism-related behavioural problems. They, unfortunately, will always require 24 hour supervision — which is why I make the point that government funding needs to be shared and allocated throughout the entire life spectrum.

Genetic findings about autism factors are huge!

When I received my University of Toronto alumni newsletter this morning, I was very pleased to read a news release about the latest findings of the International Autism Genome Project, Phase 2. Although the report of the study itself can be found in a June 9th advance edition of Nature, the key points for professionals and parents from the release are:

The study substantiates the importance of genes as susceptibility factors in autism spectrum disorders. Meaning that if a child’s behaviours falls within the autism spectrum, identifying those factors could pave the way for a definitive diagnosis, which in turn should lead to treatment options.   

Some of the susceptibility genes — called “copy number variants” (CNVs) appeared to be inherited while others are considered new. The result? Dozens of new autism risk genes have been discovered, including “some that might be helpful in early diagnosis.” As Stephen Scherer (Director of the McLaughlin Centre at the University of Toronto) is quoted as saying: “We now know several of the genes involved in autism and for the first time, we are able to tie many of these genes into the same biological pathways involved in brain function….Knowing these autism genes are linked, we can begin to develop therapies to target the common pathways involved.”

Another discovery made during this phase of the project was the overlap between autism susceptibility genes and those genes that were previously thought to be implicated in intellectual disability. As such, I can’t help wonder how the developers of the next DSM-V will deal with this new information.

In 10% of the families studied (1500 in all and more than 120 scientists) they found that there were some genetic “clues” that may “assist in the early diagnosis of autism or related complications.”

So, the results of this study will, no doubt, result in a paradigm shift when “it comes to our understanding of the root causes of autism and indeed other neurodevelopmental disorders.” In fact, the Canadian researchers involved in this project say the next goal “is to set up mechanisms and processes so that all families who are interested can have access” to the same testing as the 1500 families involved in the study.

Think about that. Parents being able to take their children for DNA testing, just like any other blood test. Then, if no genetic cues or CNV’s suggesting autism or intellectual disability are found, then genetic causes can be ruled out. Meaning, that the medical profession will have no choice but to look for other possible causes, including environmental toxins and possible negative reactions to vaccines.

The crux of the matter is that, even though this study’s findings have been quietly released, its findings are huge because they are about to change the way autism spectrum disorders are currently diagnosed. Here, for example, is what Harold Doherty at Facing Autism in NB wrote on that topic in relation to these latest findings.