The Inform-Every Autism Initiative
Autism Spectrum Disorder (ASD) has been on the rise in Canada over the last two decades and it has brought with it significant social, fiscal and human costs. In Canada, over 515,000 people are affected and approximately 87,000 of these are school-age children (an increase of 3,000 individuals per year within the last 5 years). ASDs now affect 1 in 68 births, and as many as 1 in 54 boys are predicted to be born with the disorder within the next five years. The lifetime educational, health and social service cost is estimated to range between $5 million to $8 million per patient.
The key to addressing ASD is early detection, intervention and treatment. The improved outcomes generated by early intervention significantly reduce the costs, both human and monetary, associated with the condition.
The greatest issue for individuals with ASD and their families both in British Columbia and the rest of Canada is the lack of reliable information, inconsistent and sometimes inappropriate service delivery and inadequate resources. This impacts the system’s ability to detect, intervene and treat the condition early in its development. Specifically, some of the challenges include:
- Lack of reliable information – once a diagnosis is confirmed, families accessing autism funding programs must learn to navigate a complex and confusing system of therapies and supports, often with little or no guidance. How parents spend the money and what kinds of treatment protocols they choose is largely up to individual families;
- Ineffective, delayed diagnosis and inappropriate treatments – ASD cannot be effectively addressed within the singular and often inadequately responsive silos of medicine, education, research, psychology or social work. Despite widely accepted evidence that earlier treatments lead to significantly better outcomes, and the fact that most experts agree that signs of ASDs are evident in the first year of life in nearly 50 per cent of affected children, most are not diagnosed until the age of 6 years or older. Furthermore, the diagnostic tools used in detecting ASDs are inconsistent and unfortunately rely mostly on traits children develop after they reach age of 3. In addition, few teachers, social workers and medical practitioners have any specialized training in autism and the wait to see specialists can be years long. The alternative is families are forced to access private service at considerable expense.
- Inadequate resources – Facing a possible $60,000 to $75,000 in annual treatment costs, families are extremely vulnerable to misinformation and those trying to sell them a “quick fix”. Desperate, they may spend tens of thousands of dollars of their own money on what seems a promising program, only to find out later that the person who sold it to them has no recognized credentials and that the program has no reliable evidence base whatsoever.
It is important to note while there are some very effective ASD programs and approaches available in the country, there is by and large an acute lack of reliable information, inconsistent services, and inadequate resources available to patients with ASDs and their families. The Inform-Every Autism Initiative tackles these challenges head on by ensuring that each and every patient and their families, regardless of where they live, has equal access to the latest information and appropriate treatment.
The Pacific Autism Family Centre Foundation (PAFCF):
The Pacific Autism Family Centre Foundation (PAFCF) is a charitable organization with a mandate to service the needs of individuals, and their families, with ASDs and related disorders. The Centre is a unique and a first of its kind project in the world. The vision of our organization is to create a centre of excellence for autism in British Columbia and Western Canada that will serve as a comprehensive and trusted one-stop orientation and service destination for individuals with ASD, their families and care teams.
On December 16, 2014, we broke ground for our Centre in Richmond, BC. The ground breaking was a culmination of the tireless efforts of our team since 2008 to develop key strategic partnerships, both public and private sector, and secure the necessary funds to make PAFC a reality. Our partners to-date include the Province of British Columbia, the University of British Columbia, TELUS Communications, Genome BC, David (Patch) Patchell-Evans – GoodLife Fitness, Cocchia Family, and Variety the Children’s Charity, just to name a few.
With its hub (named after our lead donor), (“The Goodlife Fitness Family Autism Hub”), in Richmond, British Columbia, the Centre’s core purpose is to become a knowledge centre of excellence that will link together state of the art resources for assessment, treatment, education support and research, in order to continuously build capacity to address the lifespan needs of individuals with ASDs. Our goal is to ensure that the Centre builds upon the existing ASD services currently available, and acts as the catalyst for continuous development of best practices – driven by the needs of our ASD community, and research developed by our partners and stakeholders.
A Model for Canada:
Among the exciting elements of the Inform-Every Autism Initiative is its ability to catalyze collaboration on a national level and encourage the sharing of research and information, both of which are fundamental to informing the therapeutic decisions taken by service providers as they assist ASD patients and their families. The “big data” component of Inform is very consistent with the federal STIC initiative and will serve as a foundation and repository for any work being done on ASD in Canada. While much data exists, it is currently held in various “silos” and one of the goals of Inform is to bring all the disparate data sets together to serve as the foundation for which all future data is built upon. Our vision for Inform is for it to be a catalyst for a multi-disciplinary research agenda provided and governed by multiple institutions.
The two-way portal created by Inform will enable families and patients to access the most up-to-date information and treatment while allowing them to inform research being conducted. Whether a patient or caregiver lives in Fort St. John, Cranbrook, Campbell River or Vancouver they will be connected to the hub in real time. As the program matures, it is not difficult to envision connecting patients and caregivers in Cornerbrook, Thompson or Timmins to researchers and information in Richmond.
Appendix A – Context
Autism on the rise:
ASDs are a developmental disability that can cause significant social, communication and behavioural challenges. There is often nothing obvious about how people with ASDs look that sets them apart from other people, but people with ASDs may communicate, interact, behave, and learn in ways that are different. The learning, thinking, and problem-solving abilities of people with ASDs can range from gifted to severely challenged. Consequently, support levels for people with ASD range from minimal to significant.
There are five disorders that fall under the Autism Spectrum umbrella. The majority of children diagnosed will present with one of either Autism Disorder (classic Autism), Asperger Syndrome (AS) or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Rhett’s Syndrome and Childhood Disintegrative Disorder are extremely rare. While each disorder is distinct, they share common characteristics such as social difficulties, rigid interests and communication difficulties.
Currently there is no cure for ASDs and there are only two options available to individuals and their families currently in Canada:
- Behavioural modification, or
- Application of medications that are directed towards the symptoms.
These options, however, do nothing to treat the underlying pathology of the disease. The goal of PAFC is to provide a genuine and effective alternative for patients and families which combines state of the art resources for early detection, molecular and genetic research and data, education, assessment, treatment and support. The objective is to continuously build service capacity throughout a large geographical area and, in turn, address the lifespan needs of patients and their families.
The prevalence of autism in Canada is one the rise:
The prevalence of autism in British Columbia is also on the rise:
ASDs are on the rise in Canada and around the globe. They are affecting our children at rates that exceed those of juvenile diabetes, paediatric AIDS, schizophrenia, cancer and cystic fibrosis combined. In Canada, over 515,000 people are affected and approximately 87,000 of these are school-age children (an increase of 3,000 individuals per year within the last 5 years). ASDs now affect 1 in 68 births, and as many as 1 in 54 boys are predicted to be born with the disorder within the next five years. No one knows what causes ASDs or why the prevalence is rising so quickly, but at present it is believed to be the result of a complex array of genetic and environmental factors.
The rise of ASDs is presenting Canadians with immeasurable personal, medical, economic and social costs. The lifetime educational, health and social service cost is estimated to range between $5 million to $8 million per patient. ASD’s are among the most complex and fastest-growing medical diagnoses affecting young people today.
Furthermore, some are estimating that a significant proportion of our homeless population and those in the prison population are in fact untreated or undiagnosed adults with autism who have trouble coping alone and whose propensity to become victims of physical and sexual abuse is very high. Because of their socially naive tendencies, people with the disorder make easy “marks” for unscrupulous predators. In the US, studies estimate that 15 to 20 per cent of homeless people have autism spectrum disorders.
Challenges associated with the current service options:
The greatest issue for individuals with ASD and their families in British Columbia and large parts of Canada is the lack of reliable information, inconsistent and often inappropriate service delivery, and inadequate resources. For example, some of the challenges include:
- Lack of reliable information – once a diagnosis is confirmed, families accessing autism funding programs must learn to navigate a complex and confusing system of therapies and supports, often with little or no guidance. How parents spend the money and what kinds of treatment protocols they choose is up to individual families.
- Ineffective and inappropriate treatments – ASD cannot be effectively addressed within the singular and often inadequately responsive silos of medicine, education, research, psychology, or social work. As an example, wait times for diagnosis are currently far too long (average age being 6) and methods for diagnosis are also inconsistent. In addition, few teachers, social workers and medical practitioners have any specialized training in autism and the wait to see specialists can be years long.
- Inadequate resources – Facing a possible $75,000 (Autism Speaks Canada) in annual treatment costs, families are extremely vulnerable to misinformation and those trying to sell them a “quick fix”. Desperate, they may spend tens of thousands of dollars of their own money on what seems a promising program, only to find out later that the person who sold it to them has no recognized credentials and that the program has no reliable evidence base whatsoever.
Appendix B – The PAFC Model and Why it is Unique
“Hub & Spoke”:
It is important to note that while there are some very effective ASD programs and approaches available in the country, there is by and large an acute lack of reliable information, inconsistent services, and inadequate resources available to patients with ASDs and their families. The PAFC’s model takes these challenges head on by ensuring that each and every patient and their families, regardless of where they live, has equal access to the latest information and appropriate treatment via a “hub and spoke” operational model. The model will ensure a two-way passage of the latest information, research, services and best practices between researchers, service-providers, and our clients. Our model includes the following components:
- Treatment Centre – preschool and afterschool programs
- Knowledge Centre – library, videoconferencing, networking, counselling
- Information Centre – counsellors, navigators, knowledge translation
- Leadership Space – collaborative office space
- Clinic and Research – medical, lab, assessment
- Lifespan Centre – youth and adults, vocational, social, and educational
- Research Partners
- ASD patients and their families
- Health care professionals
- Academic institutions
“Inform” – key to successful service delivery:
In addition to our pioneering operational model, a truly unique aspect of our approach to tackling ASDs is our research strategy, which will be spearheaded by our research arm entitled “Inform-Every Autism”. Inform will be the first in the country to use “big data” technologies and powerful analytics to bring together government, research and community data to tackle a major disease burden in Canada.
By combining and leveraging large data bases (including phenotypic, observational, molecular, and treatment-outcome data) and providing service providers, individuals and families with direct portal access, we anticipate that we, in cooperation with our research partners, will generate the necessary insights to develop new tools for early diagnosis of ASD’s and more timely and appropriate therapies and interventions. This knowledge will be leveraged throughout the PAFC’s hub and spoke model to ensure that the latest diagnoses and therapies are made available to providers across the service spectrum, individuals and their families.
More specifically, Inform’s immediate research goal is to undertake a longitudinal study of individuals with ASD to identify the disorder’s underlying causes and therapy impacts by using research data from molecular, genomic, educational, behaviour, imaging and other leading technologies.
In addition to ensuring that our services are backed and informed by the latest and most relevant data, our research-based delivery model and our research strategy will be transformational across a number of important areas for Canadian governments and the society at large:
- Patient and family centric – PAFC is in a unique position as a first of its kind project in North America that focuses primarily on the lifetime-span needs of patients and their families through a one-stop hub and spoke model.
- Backed by research – given that there currently exists no comprehensively analyzed patient data available to guide ASD services in the country, PAFC will be the only service model that feeds service providers, patients and their families with relevant and reliable data that is so crucial to informing and guiding effective services and programs.
- Integrates a spectrum of service providers and institutions – PAFC will lead a multi disciplined approach to innovation in the area of ASD detection and treatment by involving academic institutions, governments, health care partners, industry stakeholders, service providers and their families.
- Share information and best practices – PAFC will share latest information and best practices not only within its satellite locations, but also throughout the country and the globe.
- Assist individuals with ASDs achieve full potential and help create economic opportunities – diagnosing and treating individuals with ASDs early, especially the cohort of patients with mild to moderate symptoms, greatly increases their chances of achieving their full potential. As a matter of fact, if treated early and effectively, many individuals with mild to moderate symptoms are able to complete educational and training programs, gain meaningful and fulfilling employment, and become contributing members of our communities. PAFC will be there to help travel the road towards success by connecting them with relevant service providers and employers, including the Government of Canada’s two major employment initiatives (Ready, Willing and Able and Canada Works).
- Leverage and utilize invaluable but dispersed scientific data – the longitudinal study will bring together a number of academic institutions and partners in order to utilize and leverage large amounts of big data technology to unlock information collected consistently over a number of years and across a large number of individuals. The approach will allow the data to connect with other data sets from other clinical sites and investigators elsewhere in Canada and across the globe.
- Inform government policies and strategies concerning ASDs.
- Encourage utilization of existing government funding for ASD services – by helping improve their ASD-related policies and services through verified and research-backed solutions, PAFC will be able to assist federal and provincial governments utilize their limited funds more appropriately and effectively
- Share information and service benefits with all Canadians – through a distributed service model.