Kip Chow didn’t realize they were autistic until they were an adult.

The 2021 UBC grad spent years in virtual disability spaces, interacting with people who discussed their experiences with autism. But it took Chow a while to realize that they related to these experiences too.

“Very slowly I figured out that I relate to some of those things,” Chow said. “I did a bunch of further research into what being autistic looks like outside of stereotypical presentation … and I was like, ‘Oh, I think that’s me.’”

Chow became more certain they were autistic after moving into primarily autistic spaces and hearing more and more experiences they related to.

“Gradually learning about others' experiences and thinking more about my own experiences growing up — and just in general — is how I figured it out,” Chow said.

Soon after, Chow sought out an autism assessment to see if they could get a formal diagnosis to access academic accommodations at UBC. Accommodations can include extended time on tests, distraction-reduced test taking environments and easier access to extensions on assignments to name a few.

But, when they emailed different autism advocacy organizations, they were told that an assessment would cost at least $2,000 and could only be done privately.

“I was like, oh that’s bad, I don’t want to do that. But I’ll do it if I really have to,” Chow said.

But Chow was lucky — they asked in online local disability communities about the assessment process and were pointed to former UBC professor and psychiatrist Dr. Anthony Bailey, one of the few psychiatrists who did autism assessments covered by the BC Medical Services Plan (MSP).

Chow, who was on leave from UBC at this time, called to get on the list.

Six months went by.

A year went by.

Then, Chow got a call. They booked an assessment, and were diagnosed with autism. From there, they were able to get appropriate accommodations from UBC’s Centre for Accessibility.

Waiting a year seems like a long time. But waiting only a year and not having to pay thousands of dollars out of pocket for an autism assessment is rare for adults in BC who want to be diagnosed.

The province funds autism assessments for those under 19, but currently there’s an 84-week waitlist to get a free diagnostic assessment through the BC Autism Assessment Network. It can stretch up to three years in certain parts of the province.

If you’re an adult seeking an autism diagnosis, get ready to shell out upwards of $2,000 for a private assessment. That’s because there’s no provincially-run autism assessment network for adults. And in the private sector, very few doctors conduct assessments that are covered by MSP.

Deborah Pugh, the executive director of Autism Community Training, said it’s “disgraceful” that it’s so difficult to get a publicly-funded autism assessment as an adult in BC.

“This has been an issue going back 20 years in British Columbia,” Pugh said. “I think it is a human rights issue because what other diagnosis can you think of where there’s nowhere to refer you to in the public health system, and you’re turned away if you don’t have the money to pay for a private assessment?”

Bailey — who Pugh said “did a tremendous job over the last decade in helping particularly students at UBC with diagnoses” — retired last month, leaving even fewer options for adults to turn to if they want to be diagnosed with autism. Bailey declined an interview due to ill health.

“It’s a situation that has been getting progressively worse because the Ministry of Health has not taken action,” Pugh said.

Brock Sheppard, from Autism BC, said the advocacy organization has asked the Ministry of Health “to provide public funded assessments for adults and ensure that there are adequate practitioners to deliver the assessment and support services that follow an adult diagnosis.” But Autism BC never heard back from the Ministry of Health on this issue.

The Ministry of Health sent The Ubyssey information on autism diagnosis for children, but did not respond to multiple requests about why there’s no publicly-funded diagnosis for adults.

Diagnosis needed to get accommodations at UBC

Chow found getting accommodations through UBC fairly easy because they had a diagnosis. But disability accommodations at UBC are rooted in Policy LR7, which states that in order for students to get accommodations for a disability they must have current documentation.

Two issues emerge with this requirement: first, the sheer cost for many to get an assessment. And second, the confusion around the “current documentation” requirement.

The Centre for Accessibility tries to find funding for students who need it, said Director Janet Mee.

Funding opportunities can come from external sources, Mee said. She noted the AMS/GSS Health Care Plan and referenced the $1,500 mental health benefit. A guide to the plan states that “diagnostic services” are covered, but does not specify how much. She also said the Centre helps students look at parental extended health care to see if any of the cost can be covered.

She also pointed to provincial and federal grants.

“There’s currently a conversation at the provincial level about expanding access to the Canada [Student] Grant to cover the costs of documentation,” Mee said. “We are quite hopeful that that will shift and that that will become another resource for students.”

Internally, Mee said the Centre works with enrolment services to identify sources of funding.

“We’ve been pretty creative and working with enrolment services to find bursaries and other sources of funding, where resources are the barrier to getting the documentation that they will require.”

However, Mee said there is no specific funding allocated to helping students get a diagnosis.

Oliver McDonald, the previous president of AMS resource group UBC Disabilities United Collective, thinks UBC should be directly paying for students to get a diagnosis due to the barriers that exist.

“Asking students to pay $3,000 to access something that they need is ridiculous,” he said.

McDonald is not autistic himself, but often heard from autistic students through Disabilities United Collective about problems they experience at UBC.

“It’s just incredibly difficult and time-consuming and exhausting for people to find any sort of medical diagnosis and of course, to get accommodations based on either being autistic or not, you need medical documentation,” McDonald said. “So, that’s a huge problem.”

McDonald said students can also turn to UBC Disabilities United Collective for funding. As an AMS resource group, the Collective has access to the AMS resource group fund, a pool of $500,000 split among the various resource groups. Students interested in accessing this funding can contact the president of Disabilities United Collective.

“There’s a lot more struggles that go into getting diagnosed than just finances,” McDonald said. “But, it is a big resource that I really hope can help people have access to things that they wouldn’t otherwise have access to.”

Chow agreed that the biggest barrier to accommodations for students is the diagnosis requirement. While they understand why that requirement exists, they said it could be more flexible.

“Let’s say, hypothetically, I’m a student in first year. I figure out I’m autistic in second term. I’m struggling,” Chow said. “I have to wait at least one entire year or pop out like $2,000 to be able to get the help I need? That’s rough.”

Mee said the Centre recognizes it can be tricky to obtain those diagnoses in the first place, but that the Centre is looking for documentation from an “appropriate medical practitioner.”

“We rely on the medical practitioner to determine what assessment that they’re going to use in order to come to the conclusion of that diagnosis.”

Under Policy LR7, Mee said the Centre has the ability to provide interim accommodations to students going through the assessment process or looking for funding. UBC is currently reviewing the accommodation process as part of the Inclusion Action Plan’s implementation.

Asking students to pay $3,000 to access something that they need is ridiculous.

— Oliver McDonald

Clear communication is another challenge — UBC’s accommodations policy states that students must “usually” have a diagnosis from within the past three years.

However, Mee said this does not apply when it comes to autism as autism is considered a “permanent condition.” She said the Centre does accept a childhood diagnosis, despite permanent conditions not being addressed in policy.

“We have discretion within the policy to make decisions based on our own professional expertise and our knowledge of the community and access to documentation and those kinds of things to make decisions,” Mee said. She added that the Centre would accept autism diagnoses that are “much older” than three years.

That asterisk not being written out in policy has confused students. Casey Broughton, an autistic UBC alum, said when she applied for accommodations she was nervous it wouldn’t be accepted because she only has a childhood diagnosis.

Broughton said the Centre should be clearer in policy or in communications to students that there is more flexibility to the policy than stated.

“[The policy wording] is scaring away people that should be registering or should be able to register,” she said.

Mee agreed that the Centre can always do better on communication. She acknowledged that since the policy states three years as a requirement for recent diagnosis, it’s a bit tricky to communicate the exceptions they make, such as with autism.

Emma Smith, a master’s student in library and information studies, was 11 or 12 when she was diagnosed with autism. The process of getting an assessment and accommodations was fairly straightforward for her, but said it might be tough for other students.

“Somebody who is new to the province or somebody who doesn’t have that sort of support system, or somebody who doesn’t have English as a first language … I imagine that would just make everything much more difficult,” she said.

Mee said the Centre tries to deliver information more directly to students through the UBC admission application. She pointed to a part of the application that asks students if they want more information in terms of support for students with disabilities.

“If they tick that box ‘Yes,’ it’s not part of the decision-making process for their admission, but that information is funneled to the Centre for Accessibility and we send them a letter with an invitation to come and find out more about what we do,” Mee said.

Community, beyond the Centre for Accessibility, is essential for autistic and disabled students, Smith and Chow said.

Chow said being able to get advice from local disabled people through online communities was so important to them when going through the assessment process.

“I feel like that kind of connection is really important when the medical system is what it is — which is to say: complicated, unnecessarily bureaucratic and difficult to navigate in many cases,” they said.

McDonald encouraged autistic students, and any disabled students, to get involved with the UBC Disabilites United Collective.

“We need active members who can help us advocate for change,” he said.