Inclusion Done Right: Conor at Leo Hayes High School Resource Centre

Pictures above and below: Inclusion done right at Leo Hayes High School Resource Centre

Pictures courtesy of Steve at the LHHS Resource Centre

Inclusion done wrong is inclusion as advocated by Gordon Porter of the CACL and NBACL, and the current Conservative government which has very close ties to Mr Porter and the NBACL.  According to them inclusion  means that ALL children, including those with severe disabilities like my son Conor MUST be educated in the regular classroom.  This is a philosophical belief held by Gordon Porter and those who follow, in a cult like fashion, his teachings.  It is a belief system but it is not an evidence based system.  It actually results in harm to some children including some children with severe autism disorders and intellectual disabilities, some of whom are actually removed from the school system to be educated at home.   I have fought against this non evidence based, belief system since Conor has been in grade 2 when the challenges for him to receive education in a regular classroom resulted in daily self injurious behavior especially biting of his hands and wrists.

Inclusion done right is what Conor has received since our concerns were made known to the school system in Grade 2. The local school authorities could see the evidence for themselves on his hands and wrists and Conor was, and has been accommodated, since then..  Conor receives his ABA based instruction in a separate room in a neighborhood school, Nashwaaksis Memorial grade school, Nashwaaksis Middle School and Leo Hayes High School.  Conor is based in the Leo Hayes High School Resource Centre an excellent accommodation for the needs of many students with diverse conditions requiring accommodation. In that environment he has a number of adults who have both the aptitude and the interest in accommodating the needs of children with various extra needs. On trips to grocery stores in our neighborhood, and at the local theatre among other places, Conor has been greeted joyfully by the friends he has made at the LHHS Resource Centre.  Conor enjoys time in the school gym, in the controlled parking lot area where the chalk fun took place and where a basketball hoop offers Conor some extra fun.  Most of all Conor goes with other students from the Resource Centre to the swimming pool at his old middle school.  Conor loves, loves, loves the swimming pool and has social opportunities during activites he loves to do.

The assistants who work at the LHHSRC come to know Conor personally and understand his strengths and his limits.  He participates in some of the activities organized by the Resource Centre and not in some others. The Centre does consult with us with respect to activities chosen for Conor.  The LHHS Resource Centre team, often with the assistance of Best Buddies, has provided Conor with some very enjoyable activities which invoved him socially with other students both those at the Centre and those in Best Buddies and others who are kind enough to offer their time and attention. 

Conor has benefited greatly from the LHHS Resource Centre model of inclusion and the fine people who make it work.  The self injurious biting of his hands while forced into a regular classroom is long gone.  Conor loves the Resource Centre, a message I have provided to Gordon Porter at the STU Human Rights Inclusion symposium at the Crowne Plaza two summers ago.  It is a message, and evidence, which he chooses to ignore. Gordon Porter and the current government may not look at the evidence but open minded rational people can see the evidence in Conor's face in the pictures accompanying  this comment.

The Leo Hayes High School Resource Centre is a model of inclusion done right, one which accommodates, based on the evidence, the specific needs of individual students with extra challenges.  If you don't believe  me look at my happy Conor in these pictures.

Conor's 3rd Tonic Clonic (Grand Mal) Seizure

Two and a half hours ago Conor suffered his 3rd Tonic Clonic or Grand Mal seizure.  (A Year ago he also suffered an episode of rhabdomyolisis, a serious adverse reaction to his previous seizure medication).  On the previous 2 seizures Conor was in a room by himself when they started, this time he was with me in the living room after we had returned, together with his mother, from a trip to the Superstore.  I sat down in a chair in the living room and Conor came in and fell backwards like a tree falling in the woods.  Fortunately he fell into a soft, well cushioned chair and did not hit his head on anything hard or sharp. I thought at first he was joking but then I saw that the cheese which he had sought out at the Superstore had been flung across the room. I noticed then things were not right.  

His mom was home and together we moved him to the floor on his side with a soft pillow under his head.  When he spewed up fluid it went on to the pillow and a rolled up blanket we had also put under his head.  His body went into convulsions and he was unconscious for a period of 3-4 minutes.  We called 911 and they sent the emergency response team (thank you again 911 and EMT responders) and they measured his body temperature, took his blood pressure and heart beat and observed him for a period of time before agreeing that he could stay home wihout an emergency room visit this time.  They gave us signs of things to look for and be concerned about.  Conor has recovered more quickly this time than on previous occasions and he has been bouncing off the floor as always (and playing on Dad's computer). 

Seizures are more common in persons with autism than in the general population and even more common if the autistic person, like my son, also suffers from an intellectual disability.  This is stuff you don't hear often from those persons, high functioning autistics or their family members, who fight against the rights of people like my son to have a cure, who fight to prevent research into causes and treatments of autism and other neurological disorders including seizure disorders.

To those people I say you have no right to fight against cure oriented research.  If you are fortunate enough that your alleged autism is not a disorder from which you suffer, enjoy your business successes and your literary and lecturing careers and stop oppressing my son and others like him who actually suffer from autism disorders and the other cognitive, neurological and other disorders that so often accompany them. 

I am tired of listening to your complaining while my son suffers.

For those who suffer from autism and seizures or those who care for them the US NIH, through its MedlinePlus service provides the following information about tonic clonic seizures:

Generalized tonic-clonic seizure

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Generalized tonic-clonic seizure is one type of seizure that involves the entire body. It is also called grand mal seizure. The terms seizure, convulsion, or epilepsy are most often associated with generalized tonic-clonic seizures.

Causes

Generalized tonic-clonic seizures may occur in people of any age. They can occur once (single episode). Or they can occur as part of a repeated, chronic illness (epilepsy). Some seizures are due to psychological problems (psychogenic).

Symptoms

Many persons with generalized tonic-clonic seizures have vision, taste, smell, or sensory changes, hallucinations, or dizziness before the seizure. This is called an aura.

The seizures usually result in rigid muscles. This is followed by violent muscle contractions andloss of alertness (consciousness). Other symptoms that occur during the seizure may include:

• Biting the cheek or tongue
• Clenched teeth or jaw
• Loss of urine or stool control (incontinence)
• Stopped breathing or difficulty breathing
• Blue skin color

After the seizure, the person may have:

• Confusion
• Drowsiness or sleepiness that lasts for 1 hour or longer
• Loss of memory (amnesia) about the seizure episode
• Headache
• Weakness of one side of the body for a few minutes to a few hours following seizure (called Todd paralysis)

Exams and Tests

The doctor will perform a physical exam. This will include a detailed look at the brain and nervous system.

An EEG (electroencephalogram) will be done to check the electrical activity in the brain. People with seizures often have abnormal electrical activity seen on this test. In some cases, the test shows the area in the brain where the seizures start. The brain may appear normal after a seizure or between seizures.

Blood tests may also be ordered to check for other health problems that may be causing the seizures.

Head CT or MRI scan may be done to find the cause and location of the problem in the brain.

Treatment

Treatment for tonic-clonic seizures includes medications, changes in lifestyle for adults andchildren, such as activity and diet, and sometimes surgery. Your doctor can tell you more about these options.

Alternative Names

Seizure - tonic-clonic; Seizure - grand mal; Grand mal seizure; Seizure - generalized

Canada Should Fulfill Its International Commitment to the WHO and Develop a Real National Autism Strategy

Canada is on record as being a member state of the World Health Organization an organization which has just recently passed a resolution on Autism Spectrum Disorders by its member states  which, among other things, requests the Director General to work with member states to  strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems.   All member states including Canada (and the United States) supported the resolution.  In doing so Canada has made an international commitment, to the World Health Organization,  to develop a real national capacity to address autism and other developmental disorders.   

Under the Canadian Constitution international relations are within the constitutional jurisdiction of the Government of Canada which, under the Stephen Harper - Mike Lake government has expressly refused to develop, let alone strengthen Canada's national capacity to address autism on the grounds that health care is within provincial not federal jurisdiction.  This argument is of course bogus, nothing stopped the federal government from cooperating with the provinces to develop a National Health Care (medicare) system in the first place. Regardless of history it is Ottawa that must implement international commitments and the Canadian government, despite the efforts of a strong parent led autism advocacy movement in British Columbia, Ontario, New Brunswick and PEI and political leadership of the late Andy Scott,  Peter Stoffer, Shawn Murphy, Glenn Thibeault and Senarot Jim Munson, has yet to begin to develop our national capacity to address autism and other developmental disorders.  

Canada is listed on the UN web site as member state of the WHO:

"Countries

All countries which are Members of the United Nations may become members of WHO by accepting its Constitution. Other countries may be admitted as members when their application has been approved by a simple majority vote of the World Health Assembly. Territories which are not responsible for the conduct of their international relations may be admitted as Associate Members upon application made on their behalf by the Member or other authority responsible for their international relations. Members of WHO are grouped according to regional distribution (194 Member States).

C

• Cabo Verde
• Cambodia
• Cameroon
• Canada"

 As reported on the  Autism Speaks website on May 23, 2014:

"Today the World Health Assembly adopted a formal resolution making autism a global health priority. The assembly is the governing body of the World Health Organization (WHO). As such, the resolution brings a formal commitment by member states of the United Nations."

The resolution adopted by ALL WHO member states including Canada is titled Comprehensive and coordinated efforts for the management of autism spectrum disorders. In paragraph 2 of the resolution Canada, and other WHO member states through the World Health Assembly:

2.   REQUESTS the Director General:

(1) to collaborate with Member States and partner agencies in order to provide support and to strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems, to addressing mental health and disability, and in line with existing, related action plans and initiatives;

The member states, including Canada, are also specifically requested:

(4) to increase the capacity of health and social care systems, as appropriate, to provide services for individuals and families with autism spectrum disorders and other developmental disorders;

(7) to strengthen different levels of infrastructure for comprehensive management of autism spectrum disorders and other developmental disorders, as appropriate, including care, education, support, intervention, services and rehabilitation;

The current federal government of Stephen Harper and Mike Lake has doggedly refused to develop a National Autism Strategy or commitment of any kind to increase and strengthen systems and infrastructure necessary to provide services and support for individual and families with autism spectrum disorders and other developmental disorders.  The federal vs provincial jurisdiction argument did not prevent Canada from developing a national medicare system through cooperative means.  

The international commitments made by Canada through its membership in the World Health Organizations now provides a further rationale for developing a Real National Autism Strategy one that increases the capacity and strengthens the infrastructure necessary for Canada to provide the necessary health, social care other support required by autistic Canadians and their families to live full, decent lives.

 

World Health Organization Autism Resolution: Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders

As stated on the Autism Speaks website on May 23, 2014:

"Today the World Health Assembly adopted a formal resolution making autism a global health priority. The assembly is the governing body of the World Health Organization (WHO). As such, the resolution brings a formal commitment by member states of the United Nations."

133^rd session                                                                                                                            EB133.R1

Agenda item 6.1 30 May 2013

Comprehensive and coordinated efforts for the management of autismspectrum disorders

The Executive Board,

Having considered the report on the comprehensive and coordinated efforts for the management  of autism spectrum disorders, 1

RECOMMENDS to the Sixty-seventh World Health Assembly the adoption of the following

resolution:

The Sixty-seventh World Health Assembly,

Recalling the Universal Declaration of Human Rights 1948; the Convention on the Rights of the Child 1989; the Convention on the Rights of Persons with Disabilities 2007; United Nations General Assembly resolution 62/139 declaring 2 April as World Autism Awareness Day; and United Nations General Assembly resolution 67/82 on addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders,developmental disorders and associated disabilities;

Further recalling, as appropriate, resolution WHA65.4 on the global burden of mental disorders and the need for a comprehensive, coordinated response from health and social sectors at the country level and resolution WHA66.9 on disability; resolution SEA/RC65/R7 adopted bythe Regional Committee for South-East Asia on comprehensive and coordinated efforts for themanagement of Autism Spectrum Disorders (ASDs) and developmental disabilities; resolutionEUR/RC61/R5 adopted by the Regional Committee for Europe on the WHO European Declaration and Action Plan on the Health of Children and Young People with Intellectual Disabilities and their Families; resolution EM/RC57/R.3 adopted by the Regional Committee for the Eastern Mediterranean on maternal, child and adolescent mental health: challenges and strategic directions 2010–2015 all of which emphasize a strong response to the needs of persons with developmental disorders including autism spectrum disorders and other developmental disorders;

Reiterating commitments to safeguard citizens from discrimination and social exclusion on the grounds of disability irrespective of the underlying impairment whether physical, mental, intellectual or sensory according to the Convention on the Rights of Persons with Disabilities, and promoting all persons’ basic necessities of life, education, healthcare and social security; and attention to vulnerable persons;

 1 Document EB133/4.

Noting that globally, an increasing number of children are being diagnosed with autism spectrum disorders and other developmental disorders and that it is likely that still more remain unidentified or incorrectly identified in society and in health facilities;

Highlighting that there is no valid scientific evidence that childhood vaccination leads to autism spectrum disorders;

Understanding that autism spectrum disorders are life-long developmental disorders and are marked by the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest; manifestations of the disorder vary greatly depending on the developmental level and chronological age of the individual;

Further noting that persons with autism spectrum disorders continue to face barriers in their participation as equal members of the society, and reaffirming that discrimination against any person on the basis of disability is inconsistent with human dignity;

Deeply concerned about the rising number of identified individuals with autism spectrum disorders and other developmental disorders and that individuals with autism spectrum disorders and their families face major challenges including social stigma, isolation and discrimination, and children and families in need, especially in low resource contexts, often have poor access to appropriate supports and services;

Acknowledging the comprehensive mental health action plan 2013–2020 and, as appropriate, the policy measures that are recommended in resolution WHA66.9 on disability, which can be particularly instrumental for developing countries in the scaling up of care for autism spectrum disorders and other developmental disorders;

Recognizing the need to create or strengthen, as appropriate, health systems that support all persons with disabilities, mental health and developmental disorders, without discrimination;

1.     URGES Member States:

(1) to give appropriate recognition to the special needs of the individuals affected by autism spectrum disorders and other developmental disorders in policies and programmes related to early childhood and adolescent development, as part of a comprehensive approach to address child and adolescent mental health and developmental disorders;

(2) to develop or update, and implement relevant policies, legislation, and multisectoral plans as appropriate, in line with resolution WHA65.4, supported by sufficient human, financial and technical resources to address issues related to autism spectrum disorders and other developmental disorders; as part of a comprehensive approach to supporting all persons living with mental health issues or disabilities;

(3) to support research and public awareness raising and stigma removal campaigns consistent with the Convention on the Rights of Persons with Disabilities;

(4) to increase the capacity of health and social care systems, as appropriate, to provide services for individuals and families with autism spectrum disorders and other developmental disorders;

(5) to mainstream into primary health care services the promotion and monitoring of child and adolescent development in order to ensure timely detection and management ofautism spectrum disorders and other developmental disorders according to national circumstances;

(6) to shift systematically the focus of care away from long-stay health facilities towards community-based, non-residential services;

(7) to strengthen different levels of infrastructure for comprehensive management ofautism spectrum disorders and other developmental disorders, as appropriate, including care, education, support, intervention, services and rehabilitation;

(8) to promote sharing of best practices and knowledge about autism spectrum disorders and other developmental disorders;

(9) to promote sharing of technology to assist developing countries in the diagnosis and treatment of autism spectrum disorders and other developmental disorders;

(10) to provide social and psychological support and care to families affected by autism spectrum disorders and to include persons with autism spectrum disorders and developmental disorders and their families within disability benefit schemes where available and as appropriate;

(11) to recognize the contribution of adults living with autism spectrum disorders in the workforce, continuing to support workforce participation in partnership with the private sector;

(12) to identify and address disparities in access to services for persons with autism spectrum disorders and other developmental disorders;

(13) to improve health information and surveillance systems that capture data on autism spectrum disorders and other developmental disorders, conducting national level needs assessment as part of the process;

(14) to promote context-specific research on the public health and service delivery aspects of autism spectrum disorders and other developmental disorders; strengthening international research collaboration to identify causes and treatments;

2.   REQUESTS the Director General:

(1) to collaborate with Member States and partner agencies in order to provide support and to strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems, to addressing mental health and disability, and in line with existing, related action plansand initiatives;

(2) to engage with autism-related networks, and other regional initiatives, as appropriate, supporting networking with other international stakeholders for autism spectrum disorders and other developmental disorders;

3) to work with Member States, facilitating resource mobilization in different regions and particularly in resource-poor countries, in line with the approved programme budget, which addresses autism spectrum disorders and other developmental disorders;

(4) to implement resolution WHA66.8 on the comprehensive mental health action plan 2013–2020, as well as resolution WHA66.9 on disability, in order to scale up care for individuals with autism spectrum disorders and other developmental disorders, asapplicable, and as an integrated component of the scale-up of care for all mental health needs;

(5) to monitor the global situation of autism spectrum disorders and other developmental disorders, evaluating the progress made in different initiatives and programmes in collaboration with international partners as part of the existing monitoring efforts embedded in related action plans and initiatives;

(6) to report on progress made with regard to autism spectrum disorders, in a manner that is synchronized with the reporting cycle on the comprehensive mental health action plan 2013–2020, to the Sixty-eighth, Seventy-first and Seventy-fourth World HealthAssemblies.

(Third meeting, 30 May 2013)

Conor Has A Blast At The Leo Hayes HS Resource Centre Fun Run!

Conor had a lot of fun at the Leo Hayes HS Resource Centre Fun Run yesterday. I loved these pictures taken by Leo Hayes Resource Teacher Tanya McBride. Ms McBride was kind enough to forward them to us. Made my day!

For CNN and Francesca Happé Adult Autism Is A Bouquet of Pretty Pink Flowers

Update: CNN refused, on its comment section,  my brief criticism of its exclusion from its 

"autism is growing up" presentation of  severe,  low functioning autism.

CNN which loves to portray high functioning autism and Aspergers as autism has done it again with a feature called "Autism Is Growing Up" which ... of course ... features only adult persons with High Functioning Autism and Aspergers.  In fact CNN and its accomplice Francesca Happé present 7 full stories of persons with high functioning autism and Aspergers. In addition an 8th adult with Aspergers, Canadian Zoey Roberts, is featured on the opening page of this creative portrayal of Aspergers as autism telling people that "autism is not a tragedy" which of course it isn't if you happen to exist on the very high functioning end of the spectrum, if you are not one of the 50% of persons with autism disorders estimated by the World Health Organization to also  suffer from intellectual disability, or if you are not one of the many who suffer from seizures, self injurious behavior, wandering into traffic or ill physical health that many with severe autism suffer from.

CNN has done this wonders of  autism stuff before and it is not surprise that it is at it again.  In order to lend the presentation credibility though it has brought in a collaborator Francesca Happé whose credentials are well known to anyone familiar with autism research to any extent and which are presented by CNN:

"Editor's note: Francesca Happé is president of the International Society for Autism Research, a professor of cognitive neuroscience, and director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry at King's College London. Opinions expressed in this article are solely those of the author."

For Francesca Happé and CNN autism is no longer just about autistic children it is also about adults ... but only adults with Aspergers and Very High Functioning Autism. 

For Happé and CNN the severely autistic who do not live independent lives or have high IQ's or special talents, who live in the care of others, including in institutional care, remain invisible, they remain the unwashed, the  unwanted, about whom the public must not know.

For Happé and CNN adult autism is not a disorder ... it is a bouquet of pretty, pink flowers.

Linda Murphy Takes Drastic Action To Find A Place for Ashley - Well Done Linda, Well Done!

The picture above, as well as the italicized text below are from the CBC article Mother threatens to leave disabled daughter at minister's office. In essence the mother Linda Murphy desperate for a home for her developmentally delayed daughter Ashley threatened to leave her at the office of the Ontatrio Deputy Minister of Community and Social Services.  The CBC web page has the full story including some of the political discussion around the issue of adult care services for persons with special care needs.  

Any action by a parent to find a home for their adult autistic or developmentally delayed children is often met with strong criticism from people who don't know the families involved or the challenges they face. In this case I know this family from when they lived here in Fredericton beffore moving to Ontario.  Linda's daughter Ashley used to swim here in the Nashwaaksis Middle School the same pool, on occasion  at the same time, as the pool my son Conor loves to swim in.  Linda Murphy is an excellent mother.  I say that as someone who knows this family and I say that as someone who faces similar challenges in the years to come. 

Well done Linda, well done.

An Ontario mother desperate to find permanent care for her developmentally disabled daughter, threatened to leave the 20-year-old at the office of Ontario Deputy Minister of Community and Social Services Marg Rappolt.  Linda Murphy of Arnprior, Ont., a small community outside Ottawa, arrived at the office Tuesday morning to drop off her daughter Ashley and then return home. The office, however, is closed as Rappolt is currently on vacation.The former minister, Linda Jeffrey, stepped down to run for mayor of Brampton, Ont., earlier this year.

Murphy arrived at the office Tuesday morning, and went to the 6th floor with a change of clothes for her daughter and a care plan. Her daughter just graduated high school, but is said to have the mental capacity of a two-year-old.  Murphy vowed to leave her there. Murphy has been trying for years to get Ashley into a group home. She was asked to wait outside Rappolt's office, then four Ontario Provincial Police officers arrived to tell her they weren't allowed to be there. Murphy was then ushered into a boardroom where she met with senior staff. She said after years of trying she finally got what she wanted: her daughter placed in a home. She said she had been told as recently as last week that was not possible. .... A space for Ashley has been found at an Ottawa area group home. Murphy said she's disappointed it took drastic action, but is grateful to finally have her daughter in a home.

Toronto Councillor Doug Ford Confirms His Fear of Children With Autism

Dear Toronto City Councillor Doug Ford, as the father of a son with severe autism disorder, my son Conor pictured above, I want to reassure you that you needn't be so afraid of autistic kids. If you actually get to know any you may find they can even bring a smile to your day.

Doug Ford has stood by his comments that a group home for children and youth with autism is ruining his community.  While his statement, as I said yesterday, is contemptible, and makes no sense,  maybe  inside that big, thug like appearance is just a scared little boy, little Doug Ford, terrified by autistic kids.  As the father of a severely autistic son, I want to assure Doug that there is nothing to be scared of, those autistic kids, like my autistic son, will not hurt him.  Don't be afraid Doug, don't be afraid.

Toronto Star: Toronto Councillor Doug Ford Believes Treatment Home for Kids with Autism "Ruined the Community"

Is Toronto City Councillor Doug Ford so contemptible as to verbally attack  children residing at a treatment centre  for children with autism?  

con·tempt·ible

adjective \kən-ˈtem(p)-tə-bəl\  : not worthy of respect or approval : deserving contempt

"Contemptible." Merriam-Webster.com. Merriam-Webster, n.d. Web. 18 May 2014. 

The Toronto Star reports that Doug Ford, yup, Toronto Councillor Doug Ford, brother of the allegedly rehab dwelling Mayor Rob Ford, thinks that a treatment home for kids with autism ruined the community.  Doug Ford, constantly defending and enabling his brother, the Toronto mayor filmed with crack pipes in his hand, mouthing obscenities, hanging out with alleged gangsters and knocking over a female member of Toronto City Council, thinks a treatment home for kids with autism ruined his community. 

"The director of an Etobicoke home for teens with autism says she is disappointed that Councillor Doug Ford thinks the treatment program has “ruined the community.”

Speaking last week at a meeting between residents and staff from the Griffin Centre, Ford backed neighbours who are concerned about mental health treatment at a home in their midst, according to a report in the Etobicoke Guardian. “My heart goes out to kids with autism. But no one told me they’d be leaving the house,” Ford was quoted as saying. “If it comes down to it, I’ll buy the house myself and resell it.” Ford did not respond to requests for comment from the Star on Saturday."

Anyone following the Ford Brothers Comedy Hour knows that denials inevitably follow reports of disgusting, contemptible behaviour.  In all likelihood Doug Ford will do so  and attack the Toronto Star in the process. 

I am not a fan of the Ford Brothers  but I do actually hope that the Toronto Star is wrong this time. 

I hope that a city councillor of Canada's largest city is not so contemptible as to mouth such a disgusting verbal attack against autistic children.  

CMAJ: Current Evidence Based, Effective Autism Treatments and Interventions: ABA and Only ABA

An article in the January 13, 2014 issue of the Canadian Medical Association Journal,  Autism spectrum disorder: advances in evidence-based  practice,   confirms what American authorities have told us for decades, from the US Surgeon General to MADSEC and the American Academy of Pediatrics, ABA still represents evidence based, effective best treatment practice while "Research on non-ABA–based treatments is sparse and shows limited efficacy.":

Autism spectrum disorder: advances in evidence-based practice

"What treatments and interventions are available, and are they effective? The goal of existing interventions is to facilitate the acquisition of skills, remove barriers to learning and improve functional skills and quality of life. 

Behavioural interventions

Current best practices for preschool-aged children with ASD include a focus on improving language, cognitive and adaptive skills using applied behaviour analysis (ABA) techniques.58  Applied behaviour analysis refers to the application of empirically derived learning principles(i.e., the antecedent–behaviour–consequence contingency) to produce meaningful changes in behaviour.59  Such strategies are carefully engineered and implemented through a variety of approaches (e.g., discrete trial teaching to more naturalistic learning contexts) to teach skills and reduce problem behaviour. Applied behaviour analysis interventions can be provided in a variety of settings (e.g., home, specialized treatment centres, specialized or public schools) by a range of front-line therapists, ideally supervised by a psychologist or board-certified behaviour analyst who specializes in ASD. 

 A recent overview of meta-analyses60 found significantly enhanced outcomes associated with early intensive ABA-based treatment (typically for 2–3 yr) in four of five included meta-analyses (effect sizes 0.30 to > 1); these findings have since been bolstered by a sixth meta-analysis.61 Gains appear to be greatest in verbal intelligence quotient (IQ) and language communication domains,62,63 for children with stronger pretreatment skills, if treatment is started earlier,64 and with greater intensity or duration of intervention. 60–62,64 These gains achieved in various domains have been summarized in a recent Cochrane review.63 Although the overall quality of evidence is low, it is the best evidence available. A recent study in Ontario reported predictors of outcome that account for some heterogeneity in treatment response.65

A recent RCT supported the efficacy of ABA-based intervention in toddlers by showing improvements in IQ, adaptive skills and diagnostic classification.37 Models vary, notably by how ABA principles are implemented, but everyday contexts (e.g., free play v. “tabletop”) and activities based on the child’s interests (v. therapist’s agenda) have advantages, including greater generalization of learning.66 Questions remain about which forms and intensities of treatment are most effective for which children. 

Research on non-ABA–based treatments is sparse and shows limited efficacy.67 Translation of evidence-based intervention into community practice is being evaluated, including in Canada.68 A key question is whether effective high-quality programs can be less costly and more sustainable; the findings from Nova Scotia are promising.38 Studies of the effectiveness of treatment programs for older children, youth and adults with ASD are scarce. Benefits have been reported for structured teaching practices, including ABA based interventions, for a wide range of skill deficits and maladaptive behaviours.58

Is the CASDA National Autism Needs Assessment Survey Credible and Legitimate?

"This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level,"said Cynthia Carroll, CASDA Chair."

Should autistic Canadians and their family members complete this survey reference above?  While I am very skeptical about the credibility and legitimacy of this survey, for the reasons that I set out in this commentary I do recommend that all eligible autistic Canadians, family members and care givers, give the organizers a chance and  complete the survey.

The above quote from CASDA director Carroll is from the CASDA National Needs Assessment News Release, set out in full below my commentary.  The quote itself is interesting in that it seems to assume, in stating that the survey is an opportunity to serve notice to our federal government that a national autism strategy is needed, that such notice has not already been provided, when in fact our federal government has been served with such notice many times over the past decade.

Parents here in Fredericton NB were actively involved over 15 years ago in lobbying our late, former MP Andy Scott to push our federal government to adopt a National Autism Strategy. Together with Nova Scotia MP Peter Stoffer a private members bill was passed which, although lacking teeth, did at least "serve notice" that a National Autism Strategy was needed.  A motion for a real national autism strategy also originated from the Maritime Provinces when former PEI MP Shawn Murphy attempted unsuccessfully to include autism treatment under our national healthcare legislation.  The Medicare for Autism NOW! organization originating in BC with members and supporters across Canada,  has advocated extensively for inclusion of autism treatment in medicare coverage for many years.  The Canadian Senate released its Pay Now or Pay Later report several years ago.

Nothing of substance resulted from these historical efforts.  Even a National Autism Symposium which had been scheduled was cancelled and then rescheduled under the hilarious excuse that premises for the Symposium were unavailable in Canada's National Capital Region where such events are a core business of the area.  When the event was rescheduled local autism community activists, including me, nominated to attend by autism professionals were not accepted for participation by the Harper government.  Instead strident anti-ABA activist Michelle Dawson was given prominence and a stage to push her opinions at the "national autism symposium".  The efforts of parents across Canada had led to the introduction to various degrees of early ABA intervention, the only evidence based treatment for autism, in the provinces. The federal government opposed a national autism strategy which recognized those efforts and instead set up a phony puppet symposium of those who opposed evidence based early intervention for autism disorders.  

Is there any reason to think that the current needs assessment survey will result in a credible, representative statement of needs of autistic Canadians and their families? The CASDA web site indicates that the survey is funded by the Public Health Agency Canada (PHAC). As someone who has seen the opposition by Prime Minister Harper and CASDA "Political Ambassador" Mike Lake to a national effort to ensure that all Canadian children receive effective evidence based treatment regardless of their province of residence I am doubtful. As someone who has been active in autism advocacy in Canada including the events leading to the replacement of the original National Autism Symposium by the phony symposium dictated and controlled by the Harper government I will be very surprised if this survey results in a credible, genuine National Autism Needs Assessment.

I  sincerely hope though that  my skepticism is misplaced.  I myself completed the survey.  As a lawyer I have on occasion changed the legal opinion provided to clients when new information, new evidence points to a different or contrary conclusion.  I hope that this survey results in a genuine assessment of the needs of ALL autistic Canadians, of all ages and severity levels wherever they live in Canada.  Just as important I hope that the survey results in effective, real action and not more posturing and inaction.  

I urge all eligible Canadians to complete the CASDA survey.

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News Release

Autism National Needs Assessment Survey Responses Surpass Halfway Mark

 In one month, over 2,600 surveys completed, but help needed from ALL provinces [TORONTO – May 12, 2014] On April 2, 2014, World Autism Awareness Day, the Canadian Autism Spectrum Disorders Alliance (CASDA) launched the first National Needs Assessment Survey for Autism in Canada. Today, CASDA is delighted to announce that, after one month, they have surpassed the halfway mark with over 2,600 responses from the Canadian Autism Spectrum Disorder (ASD) community. This National Needs Assessment Survey is the first of its kind in Canada and is designed to canvas the opinions of thousands of Canadians, from all provinces and territories, with a goal of 5000 surveys completed. After analyzing the data to date, there has been an overwhelming response from ASD professionals and caregivers in Ontario but not yet enough representation from caregivers, professionals and those with ASD in other provinces. To ensure the data is statistically accurate and representative of the entire country, CASDA needs solid rates of response from all provinces.

 "This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level," said Cynthia Carroll, CASDA Chair. While 1 in 68 people in Canada will be diagnosed with Autism, there are thousands more who live, work and care for them. The data gathered from this survey will identify existing services and service gaps, provide perspectives based on regional, individual, family and professional views and needs as well as help support surveillance initiatives. Survey Quick Facts

• CASDA needs 5000 Canadians to complete the survey in order to ensure a statistically representative sample size.

• 300 surveys completed by parents/caregivers of children with ASD are needed in each province.

• To be eligible to complete the survey you must be, an Individual with ASD, a Family member of an individual with ASD or a Caregiver of an individual with ASD.

 • Survey is open only until June 30th and takes just 15 minutes to complete • Survey is available online in English at http://bit.ly/1qkfMQy and in French http://bit.ly/1gHySe1

• CASDA will use this information to write a report for the Public Health Agency of Canada, estimated publish date is October, 2014.

• Join the conversation online using #GetTo5000

CASDA wants everyone touched by Autism in Canada to have their voice heard and together, the ASD community is in a position to influence public policy and planning in Canada.

CASDA is a national coalition of autism related professionals, family members and community members and together, they are working to secure the federal government’s commitment to the development of a National Autism Action Plan. The National Needs Assessment survey was developed by Dr. Jonathan Weiss, a researcher from York University and CIHR Chair in Autism Spectrum Disorders Treatment  and Care Research, in consultation with Cynthia Carroll from Autism Nova Scotia. This research has been  approved by the Ethics Review Board of York University. From the data collected, CASDA will produce a  report to assist with its planning and advocacy process.

For more information, contact
Marg Whelan
Project Manager
info@asdalliance.org
416-522-9180