Here is a copy of the brief I submitted:
Written Submission for Pre-Budget Consultations for Federal Budget 2025
By: True Taylor
July 2024
I. Recommendations:
● Recommendation 1: That the government includes specific initiatives in the National Autism Strategy (NAS) to find, diagnose, support, and assist older autistic adults and autistic seniors.
Recommendation 2: That the recommendations for the National Autism Strategy (NAS) outlined in the brief provided by the Autism Alliance of Canada be modified to include older autistic adults and autistic seniors.
II. Introduction
The National Autism Strategy (NAS) is anticipated to be released by October 2024. The services needed to support the entire life span of the diverse autistic population span various departments, necessitating a coordinated, whole-of-government approach that involves leadership from multiple departments (e.g., Labour and Seniors, Finance, Employment and Social Development Canada (ESDC), Infrastructure Canada, and the Canada Mortgage and Housing Corporation (CMHC)). By working collaboratively across ministries and agencies, a more inclusive and impactful set of initiatives aimed at improving the quality of life for all Autistic individuals in Canada can be developed.
By committing to a NAS, the government has signalled that it recognizes the need for a comprehensive approach to support Autistic Canadians, ensuring their full participation in society and the economy. This submission outlines targeted measures and investments to address those autistic individuals, older adults and seniors, who have, to date, been excluded from acknowledgement, acceptance, advocacy, and support, and promotes inclusivity, economic empowerment, and well-being for those forgotten Autistic Canadians.
My name is True Taylor and I’m a seventy-year-old autistic woman. In 2021 I started an online and in-person support group for autistic adults and autistic seniors called PEI Autistic Adults. I started the group because I was unable to find any support for an autistic person my age. We currently have 132 members. Our mission is to be a community of Autistic Adults on PEI through peer support, lived experience and knowledge sharing. Our vision is to celebrate and promote the positive aspects of autism while advocating for acceptance and consideration from the wider community on PEI. We are not affiliated with any organization, and we do not receive funding from any organization.
III. Explanation of Recommendations:
Recommendation 1:
That the government includes specific initiatives in the National Autism Strategy (NAS) to find, diagnose, support, and assist older autistic adults and autistic seniors who were previously excluded from a diagnosis of autism as it did not exist when they were children. The Autism Alliance of Canada is guiding the National Autism Strategy in collaboration with the Public Health Agency of Canada (PHAC)’s Division of Children & Youth. Although autism is a lifelong condition, many of their recommendations focus on children, parents, and families missing a significant portion of the autistic population of Canada in their brief. Autistic children grow into autistic adults and autistic adults grow old. In 2022, about 15.58 percent of the population in Canada fell into the 0–14 age category, 65.39 percent into the 15-64 age group and 19.03 percent were over 65 years of age. As there is no evidence the rates of autism are changing, this population breakdown indicates there are at least as many autistic seniors as there are autistic children 0-14. Research confirms autism is as prevalent in older people as it is in children: from Epidemiology of autism spectrum disorders in adults in the community in England
Autism is a relatively recent diagnosis. The DSM-III was revised in 1987, significantly altering the autism criteria and the DSM-IV, released in 1994 and revised in 2000, first categorized autism as a spectrum. As such, older autistic adults and autistic seniors were not diagnosed in childhood as the diagnosis did not exist when these adults were children and knowledge of the persistence of this condition after childhood was limited. Now we know Autism is a lifelong condition but although the great majority of autistic individuals are adults, the focus remains on children. As we can see here, our National Autism Strategy is being driven by PHAC’s Division of Children & Youth. Unfortunately, although parents advocate for their minor autistic children, no one advocates for autistic adults or autistic seniors who have been denied acknowledgement, acceptance, support, and services all their lives.
The first step will be to find older autistic adults and autistic seniors. As can be expected, after a lifetime of rejection, misunderstanding, and misdiagnosis, many/most will be reluctant to come forward. Patients who have been treated for depression and anxiety for years without improvement would be one place to start as autistic people have many co-occurring health conditions. This research article describes the issue: “Possible misdiagnosis, especially in women, should be explored. The creation of supportive, accepting, and autism-friendly social and physical environments is important and requires a coordinated effort across agencies and needs support from government policies.” From Identifying the lost generation of adults with autism spectrum conditions
The next step will be to screen and diagnose older autistic adults and autistic seniors. Currently, Canadian doctors discourage adults from being diagnosed unless accommodations are needed. This is a mistake as frequently autistic adults only realize they’re autistic and require accommodations after a life-altering breakdown or burnout. The burned-out patient then has to self-diagnose, find a doctor with the ability to diagnose them, endure the waiting list, and pay thousands of dollars. All while trying to recover from burnout. There should be doctors or other medical personnel trained specifically to diagnose autistic adults and autistic seniors. The current diagnostic tests are based on children and some doctors even require confirmation of the patient’s behaviour as a child, rendering a diagnosis impossible for those whose parents are deceased. Lack of a diagnosis contributes to mental health issues for undiagnosed autistic adults and undiagnosed autistic seniors: “Adult‐diagnosed adults were significantly more likely to report lifetime diagnosis of psychiatric conditions, even after controlling for age at reporting, intellectual disability, and sex at birth, compared to childhood‐diagnosed adults.” From Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research
“Proper diagnosis and assessment of adults with autism is critical for mental health…When you live your entire life with undiagnosed autism, you live with a constant sense of wrongness.” From Why an Autism Diagnosis in Adults Matters
The next step will be to develop programs or therapies specifically tailored to support and assist older autistic adults and autistic seniors. Autistic people find routines calming and transitions difficult. Young autistic adults usually have parents, teachers, and guidance counsellors to support them. But retirement, the loss of a partner, etc., can be devastating changes for older autistic adults and autistic seniors who may be unable to cope and, without some sort of support, end up feeling hopeless, isolated and alone. Besides autism, undiagnosed autistic adults and autistic seniors have high rates of depression, anxiety, and other mental illnesses that require therapists with specialized training to assist them. “an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.” From ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality This research article is very informative concerning the experiences of autistic adults. I hope you will get a chance to read it.
“Areas of needed advancement in this field are substantial. Emergent recommendations are as follows.
Further evidence about the physical and mental healthcare needs of older autistic adults is urgently needed.
Practice guidelines would assist healthcare providers in relevant areas of care delivery common in older adulthood, i.e., autism relative to Alzheimer’s disease, Parkinson’s disease, etc.
There is need to develop housing resources that support optimal living arrangements and care in older age.
Development of interventional supports is needed, with attention to sex/gender and other Social Determinants of Health. Given relatively few studies to date, future work in addressing the intersectional and diverse needs of the aging autistic population needs to be a priority in research and practice.
Engagement, recruitment, and training of researchers and health care providers focused on autism and aging is warranted. This invites greater emphasis on interdisciplinary training and research focused on aging in autism. Accordingly, greater attention to this issue and advocacy is recommended.” From AIDE Canada (funded by the Public Health Agency of Canada): How do we ensure the health needs of older autistic adults are met
Recommendation 2:
That the recommendations for the National Autism Strategy (NAS) outlined in the brief provided by the Autism Alliance of Canada be modified to include older autistic adults and autistic seniors.
The Autism Alliance of Canada is guiding the National Autism Strategy in collaboration with the Public Health Agency of Canada (PHAC)’s Division of Children & Youth. As autism is a lifelong condition a national autism strategy should represent ALL autistic Canadians and not just children and youth. And yet the percentage of funding, research, attention, etc., devoted to adults and seniors remains in single digits. The research articles I provided clearly show that just mentioning autism is a lifelong condition is not enough, there must be programs, therapy, research, etc., specifically focused on autistic adults and autistic seniors. Autistic people do not remain with their parents for their entire lives. The recommendations for Indigenous peoples, working people, autism diagnoses, housing, etc., apply to older autistic adults and autistic seniors and should be specifically modified to include us. “[Autism] is absolutely misunderstood at a societal level, but even more concerning is that it's misunderstood among clinicians and caregivers and professionals…That lack of understanding can really do harm and affect somebody's long-term outcome really adversely if they're not diagnosed and supported in ways consistent with autism." From Adults with autism often misunderstood and lack support
“Better diagnosis, access to care and adequate support are all essential to improving the outlook for this neglected group of seniors, experts say — although there are few studies to support these observations. “There really is no systematic research on autism over 65, and so we really don’t know the nature of the problems…Most of the data on autism and co-occurring conditions come from studies of children; only about 2 percent of funding for autism research supports studies on the needs of adults, and most of that money goes to studies of young adults” from Growing Old with Autism
Further rationale and justification for this recommendation are included in the previous recommendation. I hope you will read the research articles as they contain much more relevant information than what I’ve quoted.
The effectiveness of the Strategy, housed within PHAC’s Division of Children & Youth, is constrained by the often-siloed nature of government ministries. There needs to be a further comprehensive strategy that extends beyond PHAC's Division of Children & Youth’s reach to create and enhance support for all Autistic Canadians including Autistic Adults and Autistic Seniors.
Conclusion:
This submission outlines the adjustments and modifications needed to create a comprehensive strategy to support all Autistic Canadians, including Autistic Adults and Autistic Seniors, addressing key issues anticipated to be identified in Canada’s first National Autism Strategy. By implementing targeted measures and investments, the government can promote inclusivity, economic empowerment, and well-being for all Autistic individuals across Canada, which is the intention of Bill S-203.
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