Opinion: Why late identified adults on the autism spectrum need more support in BC

Written for Daily Hive by Terri Hopkinson, a communications coordinator with Autism BC, an organization that aims to empower, support, and connect the autism community in BC.

In just the past five months, AutismBC’s blog article on adult autism assessment has been accessed over 11,000 times. That’s an average of almost 80 times a day. That, along with the 1,200 calls we’ve received in the past year inquiring about adult assessment or services, tells us that many autistic adults in British Columbia are struggling to find the support they need.

An autism assessment can cost thousands of dollars, and currently, that cost is only covered by public funding until an individual turns 18. The problem is that many autistic people were overlooked as kids for a whole host of reasons. Older adults have seen the diagnostic criteria change radically over their lifetimes. Stigma and ableism have prevented people from receiving diagnoses. Cultural, age, and gender biases in the assessment process have caused even more people to be overlooked.

Now that we understand how autistic traits can present in a more diverse range of people, many adults are recognizing these traits in themselves. However, with few clinicians trained to identify them, a huge price tag on assessments, and very little support available on the other side of diagnosis, autistic adults are getting left behind.

An autism diagnosis can be life-changing. It allows an autistic person to better understand their strengths, helps them identify needs and ask for accommodations, gives them a community to connect to, and provides self-understanding to people who may have previously attributed their challenges to personal failings.

This Autism Acceptance Month, we’re profiling five autistic adults who received a late diagnosis or are still struggling to access one. Here are the barriers that stand in their way.

Watch their stories: 

Assessment is expensive and there is no public funding

Liv, like many autistics both known and undetected, hit burnout during the pandemic. They were new to Canada and studying for their master’s degree. During the COVID-19 lockdown, increasing stress and isolation caused many autistic people to hit their breaking point. For those of us who were undiagnosed, it was hard to understand exactly why.

Autism BC/YouTube

Now that Liv knows they are autistic, they can much more clearly identify their needs and boundaries, recognize their challenges haven’t been a result of “not trying hard enough,” and maybe, just maybe, avoid another burnout.

That last one is a big ask without a diagnosis, though. A diagnosis could lead to accommodations at university and at work. It could help them access disability funding during times they can’t work. It could help their doctors catch any co-occurring conditions that are affecting their well-being. Without a diagnosis, however, these accommodations remain unattainable. And without accommodations, so does saving the thousands of dollars needed for a diagnosis.

Not enough clinicians are trained to assess adults

Prior to realizing that she was autistic, Shannon had seen many medical professionals — including her family doctor and a psychologist — but the subject of autism had never come up. She was treated for iron deficiency for her fatigue and given leave from work for her anxiety but had no assistance in figuring out if there was an underlying issue.

Once she realized she was autistic, she had to go through three psychologists before she found one who had the expertise to diagnose autism in adults. Even then, it was months on a waitlist before she could get an appointment.

It’s clear that BC needs more education on autism at all levels. We need family doctors to know what to look for, psychologists to have connections to autism specialists, and assessors to know what autism looks like in adults, and more assessors trained so that waitlists can be shortened.

Autistic adults are frequently misdiagnosed

Autism BC/YouTube

Until recently, it was much less likely for girls than boys to be diagnosed with autism. Female autistic traits were (and still are) underrepresented in research, and many girls slip under the radar. For Indigenous girls, this problem is exacerbated by cultural biases in the medical system. As a kid in the 1990s and 2000s, this all meant Megan’s doctors concluding they would “grow out of” their autistic traits and their parents concluding they “had an attitude problem.” As an adult, it meant a diagnosis of borderline personality disorder.

The presumptions made about Megan, both as a child and as an adult, overlooked their autism in favour of “easier” answers and contributed to years-long struggles with self-worth, behavioural issues, and addiction. Now that they know they are autistic, Megan can start to accept their younger self as a vulnerable neurodivergent person dealing the best they could in an overwhelming environment. An accessible diagnosis would help them confirm this and to heal.

Stigma and ableism got in the way

Kristina was a gifted kid in some ways. They were an advanced reader and a strong student. They also had challenges with coordination, hypermobility, and sensory overwhelm. At the time, their parents focused solely on their gifts and did not have Kristina diagnosed, even if it meant they continued to struggle.

Autism BC/YouTube

Looking back, their parents were already seeing the impact pathologization and stigma were having on their higher-needs and diagnosed brother’s life. Kristina’s parents wanted them to succeed, but ableism and fear of stigma kept support resources out of reach.

When Kristina realized they were autistic as an adult, it was hard news to take. They were coming up against years of internalized ableism and an identity built around giftedness. It took years of work to undo that thinking, but once they did, it allowed them to prioritize their needs, let go of guilt, and help others close to them with similar struggles.

Adult assessment is an uphill battle without much of a reward at the summit

Both of Caroline’s children have been diagnosed with autism in the past year. Through that process of learning and self-reflection, she came to a realization: she’s also autistic. She also realized that she will likely never be professionally diagnosed. Putting aside the financial aspect, the assessment process can be long, painful, and emotionally draining.

Autism BC/YouTube

Caroline has already done that work for herself and her kids and is in no rush to do it again.

Her children’s supports and assessments are paid for by the funding available from the provincial government. For Caroline and all British Columbians over the age of 18, no such funding exists. Neither, really, do private options for those who can afford them. There are very few clinicians in BC who offer adult assessments, and supports for diagnosed adults are also lacking. To Caroline, this uphill battle is neither financially nor emotionally worth the outcome: Someone telling her what she already knows and providing no subsequent support.

Where do we go from here?

Autism is a lifelong neurodevelopmental difference and though funding ends at 18 in BC, the needs of autistic people do not. All autistic adults deserve access to supports and accommodations and late-identified autistics should not need thousands of dollars, years of time, or advanced knowledge of autism in order to be assessed.

Late-identified autistics are not less autistic than those diagnosed as children. We are not less deserving of support or understanding.

Accessible assessments are the first step in a healing journey from the trauma of existing in a neurotypical world.

Editor’s note: Identity-first (inclusive) language, like the term autistic person, is used throughout this piece and some readers may have questions. To learn more about the language used to talk about autism here.