5 Reasons Autistic Adults in BC May Struggle to get Assessed

The statistics in this article come from AutismBC’s Adult Autism Assessment Survey. If you have experience with adult assessment or are struggling to access an assessment, please fill out our survey here so we can continue to understand the needs of late-identified autistics in BC.

There are many reasons why autistic adults may not be getting assessed in BC. A recent AutismBC survey found many respondents couldn’t afford to get assessed and would have to wait months or even years to see a professional.  

 Here are five reasons why it’s tough for autistic adults to get an assessment.

 Not enough money 

Cost is a major barrier, as reported by 75% of survey respondents. An assessment can cost thousands of dollars, easily the equivalent of one or two paychecks. There’s no public funding to help, and not everyone is privileged to have savings or the ability to take on debt or loans, preventing them from getting the support they need. 

Not enough experts

Very few specialists are trained to help autistic adults, and the few who can offer assessments are backlogged. According to a few diagnosticians that we’ve talked to, the demand is getting higher, but the expertise is lacking. Some people even have to travel far to different areas in the province to get assessed, delaying diagnosis and leaving vulnerable people without resources. 

Long waitlists

Because there’s a lack of specialists in the field, people may need to wait over a year to get their autism assessment.  We’ve heard stories about how someone gets on a waitlist, only to find out it will be a year or more until they hear back. A year later, they’re unable to take the time away from work to focus on their health, and they slip through the cracks. They need to get on another waitlist to have a second chance at diagnosis. In the meantime, these undiagnosed adults don’t have extra help, and they’re unable to find the clarity and confidence they’re hoping a diagnosis will provide. 

Not enough adult services to justify the cost of the assessment

While there are some services available for autistic adults with high support needs, not everyone is eligible. Many autistic adults have told us that having a professional diagnosis leads to benefits like self-understanding and accessing accommodations, but sometimes the cost of seeking an assessment outweighs the benefits. If there were more cost-free or low-cost options available, it would give autistic adults more incentive to get assessed as they could use their diagnosis as a tool for getting accommodations met. 

Personal doubts and fears

Half of our survey respondents reported this as one of the biggest reasons they can’t get an assessment. Even if all signs point to autism, years of trauma and invalidation from others can still cause self-doubt or “imposter syndrome.” Autistic adults are often worried that if they receive and share their diagnosis, they will be treated differently at work, home, or school. Over 36% of respondents to our survey cited “doubts from family and friends” as a challenge to getting assessed.  

Many autistic people already feel alone and struggle to connect with others. Commonly co-occurring conditions like depression, anxiety, and PTSD can make personal doubts and fears seem overwhelming, which is part of the reason why autistic adults would benefit from more comprehensive care in BC. 

Other barriers to getting assessed may include transportation or mobility, the fact that diagnosis can be harder to obtain after childhood, a lack of research on how to improve the lives of autistic adults, and more. 

To learn more about autism assessment in BC, check out other resources on our blog.