Providing neuroaffirming care isn’t just about breaking barriers — it’s a lifeline for autistic people in BC who need appropriate care from people like doctors, therapists, and emergency responders.
In a recent survey, we asked autistic adults in BC to tell us about the barriers they faced while accessing neuroaffirming care, and they offered suggestions for what might help them get more support.
According to the results, 57% of participants have specific healthcare needs related to autism they feel are unmet.
Half of the respondents said they hadn’t received adequate support for their mental health needs, and 88% had co-occurring health conditions.
Over 90% of participants said healthcare staff need training on providing care to autistic people, and 83% said they need training on neuroaffirming care in general.
Here are some of the barriers and suggestions for neuroaffirming care suggested by our survey participants:
Barriers and Suggestions
Barrier: Autistic adults in BC don’t know where or how to get neuroaffirming care
- Hire people trained to support autistic adults to help them get a neuroaffirming care team
- Train care staff to provide neuroaffirming care and outreach to autistic people and their families
- Primary care health staff can learn more about autism and neurodiversity in primary care through UBC’s Autism and Professional Development website
Barrier: Paying out of pocket for neuroaffirming care makes it inaccessible
- Offer free or low-cost ongoing counselling that’s available online or in person
- Provide at-home and beyond-crisis counseling
- Allocate provincial funding to increase available staff (psychiatrists, nurses, clinicians) for individualized support to autistic adults in the healthcare system
Barrier: Symptoms obstruct access to services needed for co-occurring conditions
- Funded or subsidized diagnostic services for autism/ADHD
- Creation of an MSP billing code for autism assessments which would allow service providers to have a publicly funded option and close price gaps for private assessments
- Support for anxiety and social skills
- Peer support: One participant speaks with a peer weekly for a half hour
- Trauma-informed nurses assisting with mental health crises instead of isolation
Barrier: Conditions treated in isolation rather than holistically, impacting overall care
- Group work for neurodivergent people
- Extend services across the lifespan, including the elderly
- Collaborate with Family Smart and BC Children’s Hospital programs like Kelty’s Key Online Therapy to include autistic people in the planning/delivery process
- Training for autistic peer specialists and family specialists
Barrier: Difficulty communicating the complexity of co-occurring conditions to healthcare professionals
- Create a support hub online with support groups, online programs, and a list of services
- Psychoeducation focusing on the strengths of autism
- Post-diagnostic supports that educate and empower autistic people
- Create anti-discrimination policies for healthcare providers
Barrier: Lack of services without long waitlists, including for autism assessment
- More accessible ways to reach out to therapists/healthcare providers beyond cold calling
- Support person to help with getting a neuroaffirming healthcare team
- Trauma therapy covered for anyone with a CPTSD diagnosis
- More autism-related programs for older people
- Non-CBT/counseling support groups
- Help with navigating work demands and social situations
- Increase legal aid resources
The impact of being unable to access neuroaffirming care
Doctors and other care staff not knowing how to provide neuroaffirming care could lead to less-than-optimal health outcomes.
First, getting an assessment or diagnosis in BC is no small feat. It’s expensive, and waitlists can be months or even years long. The same goes for seeing specialists and getting procedures done for co-occurring conditions that aren’t autism, both common needs among autistic adults.
Healthcare professionals’ understanding of the relationship between autism, communication, and sickness is often lacking, leaving treatment possibilities uncertain. A knowledge gap among healthcare professionals about the interplay between autism and stomach or gastrointestinal issues adds to the complexity of the issue.
Since many autistic adults don’t work full-time in fields that give them extended health coverage, they tend to lack access to specialized healthcare. Challenges in getting suitable and affordable diet and nutrition support persist, as do hurdles in getting support from occupational therapists, leading to worse health.
For autistic people who struggle with interoception (knowing how your mind and body feel), the lack of understanding and accommodation can be hazardous. Life-threatening injuries might go undiagnosed and untreated without access to appropriate and meaningful support.
Despite that, hope remains for positive transformations around neuroaffirming care in BC. It will take time, money, and the investment of governments and non-profits to overcome these barriers, but it is possible.
What you can do now
If you don’t have money to pay for private healthcare and are stuck on waitlists, you can still do some things.
Bringing an advocate to appointments can be helpful if you struggle with communication. If that’s not an option, using an AAC (alternative/augmented communication) device can also ensure you can relay important information to care professionals.
Whoever’s talking to the care professionals can share what neuroaffirming care is and why it matters. Outlining some of the barriers and suggestions and how they can be a part of positive change might help them understand how they can adapt how they work with neurodivergent patients.
Before your appointments, try keeping a symptom tracker. If you get into the habit, you can look back at your app, journal, or voice notes to remember how you felt, when, and what the triggers could have been. You could even show it directly to a doctor so you don’t have to explain it.
Emotionally and mentally, prepare yourself before you go into care appointments. Adjust your expectations, make a safety plan if you need one, and schedule cool-down time afterward to avoid causing or worsening a mental health crisis. If you’re already burnt out, consider rescheduling.
Sometimes, feeling frustrated, angry, and sad after the appointment is also healthy.
Using an outlet, like engaging in a special interest, can help channel these negative emotions in a way that doesn’t jeopardize your well-being. Non-violent stimming can also be incredibly useful, as can sharing how you feel with someone you love.
Remember: If you’re struggling, you’re not alone. Consider attending our Getting Together on the Spectrum online group for autistic adults to meet, connect, and share. Recall the pros of being autistic and know that you deserve care that gives you hope for a better future.