Autism Society Canada Misrepresents Autism On Its Web Site Makeover By Hiding The Many with Autism AND Intellectual Disability

The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that once it was back up the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again.  ASC, on its "new" web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that  as much as  50% (World Health Organization) of persons with autism disorders also have an intellectual disability:

"Q: Do persons with autism always suffer from intellectual disability?

A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability."

(World Health Organization, September 2013) 

Canadian families of children with autism disorders should be aware of the very high % of persons with autism disorders who also suffer from an intellectual disability.  Those families should also be aware that many with autism and intellectual disability have very high rates of seizures and increased mortality.

Statements below from a more reliable source that takes autism disorders more seriously than the Autism Society Canada appears to:  the American Academy of Pediatrics in a statement concerning Management of Children with Autism Spectrum Disorders published in 2007 and reaffirmed in 2010 and 2014. 

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

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)