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Late Not Less: Why Late-Identified Autistic Adults Need More Support in BC

April 2nd, 2023

Terri Hopkinson

For Everyone

In just the past 5 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 and 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.

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 at Emily Carr. During this time, in COVID 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.

This wasn’t the first time Liv had dealt with burnout, but it was the first time they suspected they might be autistic. This time, as they lost function and capacity for their everyday tasks, their autistic traits started to peek through the mask they had been building for decades.  

They started journaling and reading, knowing what they were experiencing wasn’t explained simply by ‘anxiety.’ They read many articles about executive dysfunction and found autism coming up again and again. They started putting the pieces together. Their emotional dysregulation, social challenges, and sensory profile all felt connected in a way they never had before. As Liv put it, “It wasn’t just that a lightbulb went off, it was like I discovered electricity. [Autism] explained everything.”

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’s autistic, Shannon, a lawyer from Victoria, 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.

She first started to suspect that she was autistic in 2021 after reading Justin McElroy’s article “So, it’s Autism Awareness Day.” His descriptions were so familiar that she brought the question to her psychologist, “Could I be autistic too?” This psychologist was encouraging but knew very little about autism in adults and could not refer Shannon elsewhere. On her own, Shannon found a clinician an hour away who did adult autism assessments and made an appointment.

She prepared well for the meeting, but this led to him judging her communication skills as too good for an autistic person. He also missed how little eye contact she was making and how much she was masking. He told her that he was bound by her score on the ADOS, an observation metric originally designed to assess children. Not only could he not diagnose her with autism, he told her that no psychologist in BC would be allowed to either. This was not true, but Shannon had no reason not to trust the “expert.”

Shannon was at a loss. If she couldn’t prove she was autistic, what came next? Would she be able to get the accommodations she needed at work? Without a formal diagnosis behind her, she was reluctant to share the difficulties she was experiencing were related to autism

Luckily, Shannon caught the recording of AutismBC’s Talk on adult assessment hosted by Dr. Grace Iarocci and Dr. David Worling, two of the very few diagnosticians in BC experienced in adult assessment. Shannon reached out to Dr. Worling’s team and, after being put on a long waitlist, was assessed and diagnosed with autism.

It’s clear that BC needs more education on autism at all levels. The process of diagnosis would have been much smoother had Shannon’s family doctor known what to look for, if her first psychologist was more familiar with autism and better connected to autism specialists, if her second psychologist had been trained on what to look for in high-masking adults, and if there were more assessors available to shorten waitlists.

Autistic Adults Are Frequently Misdiagnosed

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.”

These labels led to years-long struggles with self-worth, behavioural issues, and addiction. As an adult, a mental health professional looked at this history and diagnosed Megan with borderline personality disorder (BPD), a significant mental illness that has many diagnostic criteria that overlap with autistic traits. Once Megan spent time with others who were diagnosed with BPD, they began to realize that they didn’t really identify with the struggles they were facing. In fact, they started to recognize themself more in the neurodivergent students they work with in their role as a social worker. After a lot of research on similarities between BPD and autism, what autism looks like in women, and the systemic racism that vilifies Indigenous people with mental health challenges, Megan came to the realization that they are autistic.

The presumptions made about Megan, both as a child and as an adult, overlooked their autism in favour of “easier” answers. 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, advocate for better supports for herself and vulnerable populations, and heal.   

Stigma and Ableism Got in the Way

Shortly after their younger brother’s autism diagnosis, Kristina recalls sitting in a waiting room while their parents and brother had an appointment with a specialist. They were only seven or eight years old and had already practiced an acceptable pose to sit quietly in public: Legs crossed, hands on knees, smiling. Something about this room—the low light, the art on the walls—relaxed Kristina enough to drop this mask and make a beeline for the K’Nex building toys in the play area. When their brother’s appointment concluded, the specialist observed Kristina’s focused play and asked their parents if they had considered having Kristina assessed for autism as well.

Kristina’s parents quickly ushered them out, and Kristina never attended another appointment.

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. Their parents focussed solely on their gifts, even if it meant they continued to struggle. Looking back, their parents were already seeing the impact pathologization and stigma was 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.

In 2018, as an adult, Kristina suffered a workplace injury and enrolled in an occupational therapy day program. A neuropsychologist involved noted that Kristina had indicators of being neurodivergent. That doctor suggested that Kristina explore the possibility of autism as it could help them understand and advocate for their needs, as well as inform their ongoing care.

It was hard news to take. Kristina was 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.

“Being autistic without knowing you are autistic is incredibly isolating,” says Kristina.

“Things that seem absurdly simple for other adults require impossible amounts of work and time to secure and maintain. If you have any self-awareness, you know the difference is because YOU are different, but you also do not know why, or how to deal with those differences. Over time, isolation and failure seem to compound like interest.”

Adult Assessment is an Uphill Battle Without Much of a Reward at the Summit

Caroline realized she was autistic in the middle of her son’s violin lesson. She had stepped away for a moment to continue her research on autism in girls. She was mid-intake for her son’s assessment and her doctor had recently suggested that her daughter may be autistic as well. She knew her son was more likely to be identified first, as he is white-passing and male, and wanted to know how autistic traits might look different in her daughter.

Instead, she ended up going down a rabbit hole that led to reading autistic women’s accounts of their experiences, tweets and memes from autistic adults, and more that she related to. On the inside, she was having a revelation. On the outside, she returned to her son’s lesson.

Both of Caroline’s children have now been diagnosed. Through that process of learning, and self-reflection, she is now even more certain that she’s autistic. She’s also more certain that she will likely never be professionally diagnosed. Putting aside the financial aspect, the assessment process can be long, painful, and emotionally draining. Caroline has already done that work 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.

So, for now, Caroline is not pursuing a diagnosis of her own. Instead, she is focused on raising her children in a neurodiversity-affirming home, learning one step at a time which tools may support her children, and creating makeshift versions of those tools to support herself.  

Conclusion

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 an 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.

AutismBC wants to be an advocate for autistic adults. We are collecting stories, like the ones in this article, from late-identified autistics about their journeys. We want to hear about how realizing you’re autistic changed your life, what barriers have stood in the way of diagnosis, and what you’d like to see in terms of support and funding for autistic adults in BC.

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