Everyone
Aging with autism isn’t easy, but it happens to all of us lucky enough to reach our senior years. Because autism is a life-long state affecting the brain, nervous system, and developmental factors — among other parts of the body — changes that often come with age, such as shifts in motor function, memory, and independent living skills, can be more pronounced for autistic seniors. That means we deserve proper support, but it can be harder to access than it should be. For many autistic adults, finding clear information on things like 24-hour care and estate planning is still a challenge.
About a quarter of Canadians are disabled — millions of people managing support needs that won’t vanish as they get older. In BC, there are estimated to be about 1.1 million people with disabilities, including tens of thousands of autistic people, and that’s likely an underestimate. These people matter, and they deserve support in the later years of life, too, not just during their childhood and adolescence.
Most of the focus has been on young autistic children. Lately, there’s been more conversation about autistic adults, but older autistic adults are still often left out of the conversation. This blog is a step toward addressing the representation gap and ensuring that autistic seniors are more included in conversations and resources.
Why don’t I see autistic seniors?
You probably do, just without knowing it. Autistic seniors who were born in the twenties to the fifties wouldn’t have benefited from the knowledge we have of autism today. Most of them would have gone unnoticed, been deemed eccentric, or misdiagnosed in their youth, adolescence, and/or young adulthood. The creation of the internet and the wide dissemination of information through knowledge-sharing networks helped people all over the world learn about autism. And while parents went through the assessment and diagnosis process with their children, they may realize they are autistic too. Sometimes, parents are already 65 or up by the time they find what they need for self-discovery. If they choose to get them, assessments and diagnoses can also take time and deter them from telling others they’re autistic.
Upsetting but true: Scientists, care providers, and the government didn’t expect us to live past 65 until relatively recently. This is a complex topic that we can explore further in another blog, but essentially, we’re living longer now because we have a better chance of living happy, healthy lives than we used to. With growing awareness and support comes growing life expectancies.
What isn’t working?
With even less support than the average senior, autistic people 65 and up face a disturbing lack of services across BC.
Autistic adults designated Persons with Disabilities by the federal government can get support until they’re 65, but after that, they lose access to almost all the programs they may have come to rely on. Community Living BC (CLBC) continues supporting them until death, but otherwise, they have to fill the gaps as best they can with the limited resources available. Critical supports, such as the Canadian Disability Benefit and Disability Tax Credit, remain insufficient to meet living costs. Grassroots organizations can provide some relief, but they can’t come close to addressing the totality of the issue: Autistic seniors need more help than they can get, and they deserve to receive appropriate care.
Autistic people with higher support needs often rely on family or long-term caregivers throughout their lives. When those caregivers are no longer able to provide support, it can leave them without the safety net they’ve depended on. Without the right supports in place, they may be more vulnerable to challenges like exploitation, health risks, and social isolation. An American study called “Aging and Health Matters” found that loneliness puts older adults at risk for serious mental health problems, demonstrating the need for more comprehensive and autism-friendly social programs and similar supports.
It’s also worth asking how prepared CLBC staff are to support autistic seniors without a dedicated department to manage them. There’s limited information available about this demographic’s unique experiences, needs, and desires; as a result, there are few specialists able to provide appropriate care. Without the research, it’s challenging to train providers who can help bridge these essential service gaps.
Sound familiar? It’s a very similar problem to the one BC has with autism assessment: There aren’t enough specialists to meet the demand from people looking to get assessed. Also relevant, Indigenous and Black People of Colour (IBPOC) being excluded from clinical trials has shown how the research gap leads to harmful misinformation, stigma, and a lack of equitable access to appropriate care. Now we know autism is not white and male, so more people are understanding they’re autistic, which is adding to the assessment waitlists, which is highlighting the comparative lack of assessors. In the same vein, now that we know autism is lifelong and autistic seniors exist, we can find and support them in the ways they need.
One way to help is advocating for autism-specific palliative care, a type of healthcare which provides “care, comfort, and support to individuals and families who are living with a life-threatening illness” (Lakehead University). A palliative care team is a caregiving group comprising family, friends, healthcare providers, and volunteers. “It is about improving the quality of life at a time when the goal is not a cure,” says Lakehead University in a brochure on the subject. While it is for people of all ages, many seniors will require palliative care before passing on, either at home, in a care facility or in a hospital. It can include pain and symptom management, links to resources, and support for social, emotional, spiritual, caregiver, volunteer, bereavement, and resource needs. For autistic seniors, that support might look different. They are likely to have co-occurring conditions that complicate their case. Having providers who understand their needs and triggers and can provide a structured routine in a sensory-friendly environment is essential. They should be trained in supporting and responding to situations like self-aggression, self-injury, meltdowns, selective mutism, and other intense or heightened responses. (ConsidraCare).
What do autistic seniors want?
Here are some of the concerns autistic seniors told us they have, according to our recent survey:
- How am I going to plan for when I die, and my child won’t have my support anymore?
- How am I going to plan for when my parents/other caregivers die, and I won’t have their support anymore?
- How can I cope with my loved ones passing away more frequently as I get older?
- How can I manage my needs and live independently when my co-occurring conditions make things especially complex?
- How am I going to survive if I can’t take care of myself alone and I don’t have the money to pay for residential care?
- How will I be able to cover my basic needs if I want to live independently but Canadian disability benefits don’t apply to seniors?
- Who will be with me when I’m sick and/or dying?
- How can I get help with writing a will and other estate planning?
- How can I get opportunities to connect with other autistic seniors?
- How can I cope with loneliness and isolation?
History of Disability Rights in Canada
Disabled people have been hidden, silenced, and neglected throughout history; it is only thanks to tireless advocacy by the community that our quality of life has improved. It wasn’t until 1985 that Section 15 of the Canadian Charter of Rights and Freedoms was enacted, granting all Canadians, including autistic individuals, legal equality. It was one of many beneficial human rights laws that have emerged in the last 40 years, but there’s still a lot of work to be done. Stigma is still a barrier to support. Suicide rates have gone down, though they remain higher than for the general population. And as more people know about and take an interest in autism, our chances of being able to grow old can only get better.
Conclusion
Enjoying our twilight years in comfort and dignity should be accessible to everyone. Still, the current system offers few options for autistic people over 65 unless they can access full-time, individualized support.
Very few of us can; the majority of all autistic people over 19 struggle with income and employment insecurity to some extent, and we’ve heard time and time again that poverty doesn’t improve with age unless it’s accompanied by adequate social support.
Including autistic seniors in our advocacy efforts as members of the broader autistic community is essential, and the process starts with education. Share this article with a friend or on your favourite social media platform to join the conversation and help others understand the barriers for autistic seniors in BC.
