In BC and across Canada, thousands of autistic adults provide unpaid care for disabled loved ones. While we know this to be true from our recent survey and the lived experience of our staff, there’s very little information about autistic caregivers’ experiences online.
One third of the 108 autistic adults who responded to our survey were caregivers, with 35% of them providing care to a child(ren), 25% providing care for an adult(s), 21% providing care to a teen(s), and 19% providing care for a senior(s). That diversity isn’t reflected in most autism-related media and programming, and we want to be a part of advocating for more representation and awareness.
This blog is one small way to support these community members providing essential work in BC and beyond.
Examples of autistic caregiving
Here’s an example of what that autistic caregiving can look like in practice, outside of a typical parent-child relationship.
An autistic adult provides care for:
- Their autistic partner who uses a manual wheelchair and lives with chronic daily pain and fatigue as a result of ME/CFS, EDS, POTS, fibromyalgia, C-PTSD, and other related conditions.
- Their neurodivergent partner (a different person) who has severe hip dysplasia, C-PTSD, ADHD, and other related conditions.
- Their autistic best friend who has BPD, OCD, and ADHD.
- Their autistic brother who has Tourette’s, OCD, and ADHD.
- All of these people also have related mental health needs.
- All of these people also provide care for this autistic adult, making all of them neurodivergent caregivers as well.
In these kinds of atypical dynamics, people show up for each other in the ways they need, essentially delivering individualized care plans that are adaptable and accessible. They demand flexibility around capacity and a commitment to helping one another succeed despite the challenges. At the core of these relationships is devotion to community care, an important concept to disability justice.
Protections and benefits for non-traditional family structures are crucial for people who are taking care of their spouse, for example, or who don’t have any support people to provide care for them after they turn 19. These protections and benefits would help both caregivers and care receivers with long-term individual and relational health.
Community care
Community care is an integral element of disability justice, not only because we rely on it to survive when systems fail us, but because they provide pathways for liberation not possible in more traditional, ableist spaces. This way, we can avoid facing offers that aren’t helpful because they don’t suit our individual needs.
Peer-to-peer care between autistic people can feel natural when we have similar experiences. In those judgement-free spaces, connection feels healing and reciprocal, which can be refreshing for autistic adults who struggle to feel understood in neurotypical relationships.
Burnout and risk management
There are risks associated with caregiving, especially for some autistic people. These challenges are often compounded for caregivers who are low-income, racialized, or queer, adding another layer to the lack of support.
One of the most common ones is burnout, often experienced by both caregivers and autistic people. It stands to reason, then, that autistic caregivers have double the risk factor to burn out — and when we do, it can destroy our capacity to provide care. That can create a domino effect that harms everyone in our network, which could be avoided with more external support.
Complications can arise when several autistic caregivers’ needs outweigh their capacity, leaving nobody available in times of crisis. Without external support that’s free and easily accessible, we can end up alone when it’s not always safe. We can’t always receive care when we need it, even if we dedicate our lives to providing it in the community.
Autistic caregivers can be just as good at delivering care than non-autistic people. But pretending it has no negative impact on us won’t help anyone, especially when caregiver support is already considered essential for parents of autistic children in BC.
It’s time services were more equitably extended to autistic adults taking care of other autistic adults so we can keep our cups full and do more for our communities outside of just crisis care. That means more fully funded services to improve our health and wellness as caregivers and receivers.
Remember, just because it’s hard sometimes doesn’t mean it’s not worth it. Through dedication to this good but difficult work, autistic caregivers further refine skills and find others to share knowledge with.
The answer to keeping us out of burnout and validating our work is giving us more help than we’re getting now, both at a caregiver and care receiver level.
Community care matters, but it’s often a rhetorical band-aid for untreated societal wounds: Poverty, ableism, and a lack of commitment to effective long-term solutions from various authorities, for example.
Existing support
Below, you’ll find a list of organizations providing resources that could be helpful for autistic caregivers, though most focus on general caregiver wellbeing support.
- Family Caregivers of BC
- Brain Injury Canada
- Pathways BC
- Developmental Disabilities Association
- Autism Canada
- Cerebral Palsy Association of BC
- Government of British Columbia
- West Kootenay Boundary Caregiver Support
- Community Living BC
- Vancouver Coastal Health
- Caregiving Excellence Canada
- Government of British Columbia
- 211 British Columbia
- Interior Health
- CARE BC
- Clicklaw
If you’re feeling at capacity, consider calling the Family Caregivers of BC Caregiver Support Line at 1-877-520-3267 and ask about short-term caregiver wellbeing support.
What local peer caregiver supports are you connected with? Let us know by emailing [email protected]. We want to include whatever’s missing so more autistic caregivers can get what they need to succeed.
Next steps
Autistic caregivers hold communities together. It’s time our systems did the same for us.
One hurdle strengthening reliance upon autistic caregivers in BC is the Canadian Disability Benefit not reflecting the cost of living in cities like Vancouver. Most of us have less money than we need to make it day to day, so we may need assistance with basics like having enough groceries, clothes, and medicine. It’s in these moments that we go to the community for help, often falling into the arms of other autistic people who have been in our position and know how it feels.
That’s why we’re part of a group of organizations advocating an increase in the benefit amount in the future, but you can be part of the conversation too.
Share this post with someone who provides care in your community. The more we talk about it, the more we can change.
We’re collecting stories from autistic adults providing care in any form — for partners, friends, or family members — to help us advocate for better support. If you’d like to share, please contact us.
