Late Not Less: Not Enough Clinicians Are Trained to Assess Adults

Shannon Davis (she/her) is a late-diagnosed autistic woman from Vancouver Island. She shares her story of realizing her autism and how many clinicians she had to go through to get a professional diagnosis.

I’ve been a lawyer for over 10 years. Writing is one of my favourite parts of my job and something I spend a lot of time doing, but I’m nervous about writing this.

I’m used to writing for judges and government officials about the interesting quirks of BC’s provincial taxes, or what happens to your undergraduate student loan when you declare bankruptcy shortly after finishing a second degree. Writing for a broader audience about a personal topic is different.

I was diagnosed with autism spectrum disorder in November 2022. I got my diagnosis after several months on a waiting list for a diagnostic assessment, several more months before that figuring out how to get a diagnosis, and several years of what I now recognize was gradually worsening autistic burnout.

I decided early on, before I got my diagnosis, that I was going to tell people about it. I felt it would be awkward to keep it a secret or to tell just a few people and ask them to keep it a secret. I also hope that telling people will help them understand me better and avoid making negative assumptions based on how they expect neurotypical people to behave. And I have found it helpful to read about other people’s experiences, so I hope I can help other people by sharing mine.

Getting an autism diagnosis was unlike any other health care experience. It was far more difficult than I expected. And I’m sure lots of people have found it more difficult than I did.

For many people, the cost is a significant or even insurmountable barrier. I’m fortunate to have a well-paying job that allowed me to pay for a psychologist and travel from Victoria to Vancouver for my appointment. But there were nevertheless some major barriers. The first, and probably most significant, was simply not recognizing that I was likely autistic and that the difficulties I was experiencing were likely related to autism. Once I figured that out, the next barrier was not knowing how to get a diagnosis — while I figured out pretty quickly that I should go to a psychologist, I didn’t know how to find someone suitable. Then there was the lengthy wait for a diagnostic assessment. Finally, preparing for the assessment — filling out detailed forms and questionnaires, arranging for other people who knew me to talk to the psychologist, and organizing relevant information to provide to the psychologist — was stressful and time-consuming.

Figuring out I was likely autistic

I had read about autism and Asperger’s as a young adult and recognized long ago that I had some traits in common with people on the spectrum, but I didn’t think I actually was autistic. There were lots of things I didn’t notice about myself until I started really paying attention, and other things I noticed but didn’t connect to autism because I didn’t know enough about it. I also assumed my autistic traits would have to be a lot more pronounced to be diagnosed as autistic. And I didn’t recognize that the problems I was experiencing with fatigue and burnout — which had occasionally been a problem in the past but had become unmanageable in recent years — could be connected to autism.

I am not surprised that I was not diagnosed as a child, given how the diagnostic criteria have evolved. I am sure there were signs when I was very young that would likely lead to a diagnosis today but would not have met the diagnostic criteria back then. In my first few years of school, I barely spoke to the other kids at all. Although I didn’t know this till recently, my mom recalls my kindergarten teacher asking if I was cuddly or if I was stiff and rigid when people tried to hug me — a question that may have been related to autism as it was understood at that time. Apparently, I was cuddly, at least with family members, so that line of questioning didn’t lead anywhere.

When I was in grade two, my mom informed me that my teacher had said I was a good student but needed to socialize more. My mom started asking me after school each day who I’d played with at lunchtime. The answer was always “nobody” and I grew increasingly uncomfortable as it became obvious this was not the right answer. But I didn’t know what to do about it. I don’t think it occurred to me there was anything I could do. Eventually my mom said, “Just find some kids you want to play with and say, ‘Can I play with you?’” While I didn’t feel comfortable doing that, I also didn’t want to get in trouble for not doing it, so I tried it the next day and the other kids said I could play with them. After that it got easier to ask, and eventually I didn’t need to ask because the other kids expected that I was going to play with them as usual.

From then on, I became quite preoccupied with making sure I was socializing enough. It took a long time, probably until I was in my late 20s, before I realized it was actually OK to go out and do things by myself — I didn’t need to find someone to go with me if I wanted to go out for a nice meal or see a show.

I’ve never been good at initiating or maintaining relationships, but I can generally manage to get along with people if I have a good reason to interact with them. As a child and even in university, this was usually enough for me to make friends with people who shared common interests: gymnastics in middle school, synchronized swimming in high school, and competitive swimming and water polo in university. I wasn’t very good at any of these, but I had fun, stayed active, and met people I could socialize with. (UVic water polo club parties were great: low-key gatherings of familiar people sitting around enjoying our favourite beverages, talking about water polo, and recounting tales of past water polo club parties.)

As an adult, I’ve found it harder to make friends. I’ve kept busy with various activities over the years (continuing with swimming and water polo, joining a sea kayaking club, and taking sailing lessons) but mostly I have made acquaintances rather than friends. (Never mind that I often have a hard time figuring out when I can consider somebody a friend rather than an acquaintance.) It has also got harder to find the time and energy to socialize. I’ve found that working full-time is a lot more tiring than being a student. And, although I am happy to live on my own because I appreciate having my own space, I find it hard to keep up with household tasks.

In the summer of 2019, it had been a few years since I started experiencing what I now recognize was the early stages of autistic burnout. I read a novel featuring some autistic characters that mentioned the Autism Spectrum Quotient, which I looked up online mainly out of curiosity. Although I got a pretty high score, I didn’t take it seriously and assumed it just reflected that I’m an introvert. I never considered that it might be relevant to the problems I was experiencing. It took another two years before I figured out, I was wrong.

It was in the summer of 2021, when I read an article by CBC reporter Justin McElroy about his own experience with autism, that I started to figure things out. One thing he said particularly resonated with me: “I have strengths and weaknesses like everyone else, but my strengths are very strong and my weaknesses create real challenges.”

I had been increasingly questioning whether I was qualified for my job, worrying I was going to get fired or that I would need to quit. I struggled to manage my workload and often felt overwhelmed by seemingly simple tasks. But I’d been doing this job for several years and had been reasonably successful, receiving lots of positive comments from colleagues and supervisors. I went back and forth between feeling like I was unqualified and convincing myself that I was in fact qualified: sure, there were some things I wasn’t as good at as other people, but there were also some significant parts of my job I knew I was very good at, and overall I felt like I could make a valuable contribution to my organization as long as I could avoid getting overwhelmed by the things I found difficult.

At the time, I didn’t know it is common for people on the spectrum to have uneven skill sets, but that comment about strengths and weaknesses got me thinking. I started reading and learning more about autism, noticing things about myself I hadn’t noticed before, and seeing other things — which I had noticed but hadn’t thought were connected to autism — differently. Maybe when I was the only one who got upset about the noisy vacuum cleaner at our office early in the evening, it wasn’t because my colleagues were so much more tolerant of the horrible noise — maybe my brain just perceived the noise differently.

Figuring out how to get a diagnosis

By the time I started thinking seriously about autism, I had been seeing a psychologist for a couple months after having an anxiety attack during a videoconference. It hadn’t occurred to me to look for someone knowledgeable about autism, because I hadn’t considered the possibility autism might be the underlying reason for my anxiety, exhaustion, and other difficulties. The psychologist I was seeing didn’t list autism as one of the areas she practised in, but I figured talking to her would be a good place to start, and maybe she could help me figure out what to do next.

I’d read Justin McElroy’s article about a week before a previously scheduled psychologist appointment, so I spent much of that week trying to learn more about autism and figuring out what I wanted to say to her about it (or whether I was going to say anything — I had some moments where I wondered if it was crazy to think I might be autistic and thought maybe it would be better not to say anything to anyone about it). When I talked to her about it, she encouraged me to look into it further.

I started searching for information on how to get a diagnosis. I naively assumed the process would be similar to that for other conditions: see a qualified professional, rely on that professional’s expertise to get a diagnosis, and then seek treatment once I got a diagnosis. Many of the resources about adult diagnosis on AutismBC’s website weren’t published when I first started looking, and perhaps I would have had an easier time if I’d had those resources.

I went to the BC Psychological Association website and did a search for psychologists who could diagnose autism in adults. I probably should have sent an email to AutismBC to ask for a list of psychologists — an option provided on the website — but I guess I am inclined to avoid sending an email to a real person when I could do an impersonal database search instead. I was unable to find anyone in Victoria, where I live, but I found one psychologist elsewhere on Vancouver Island and arranged to see him.

I had an intake appointment a few weeks after I first contacted him and a second appointment a little over a month later. He told me the process would involve two standardized tests called the ADOS and ADI-R.

One thing I had learned from reading about other people’s experiences was that I would have to be prepared to “make my case” for a diagnosis. As a lawyer, I figured I could manage that. I spent a lot of time learning about the diagnostic criteria, thinking of relevant examples from both my childhood and adult life, and preparing to share this information. I assumed that my own observations, and observations that people who knew me had shared with me, would be important. I didn’t expect that the assessment would focus on the psychologist’s observations from spending an hour with me in an artificial environment, but I was wrong.

And, at that time, I was only vaguely familiar with the concept of camouflaging. I hadn’t noticed how much I did it and hadn’t tried to stop doing it. I was probably even doing it more than usual when I met with the psychologist, because I was interacting with someone unfamiliar and I wanted him to help me. So, I was smiling and nodding as he went on and on about irrelevant things, while inside I was getting increasingly stressed and frustrated as I looked at the clock and worried about how much time he was wasting. I wasn’t doing this deliberately — I had just learned (unconsciously) that I was supposed to act this way. I didn’t recognize that keeping it up all the time was bad for my mental health and keeping it up in this context could prevent me from getting an accurate diagnosis.

At a subsequent appointment, before we’d scheduled a time for the ADI-R portion of the assessment (which was intended to evaluate whether symptoms were present in early childhood), I asked if he had enough evidence to conclude that the diagnostic criteria were currently met or if he needed further information. He told me he hadn’t scored the ADOS yet, but he could tell without scoring it that my score for communication would fall below the threshold for a diagnosis. He said this meant he was not allowed to give me a diagnosis. He eventually offered to refund the deposit I’d paid for the assessment, so I was only charged for a one-hour intake appointment. This seemed very reasonable when I was under the (mistaken) impression that government guidelines prevented him from giving a diagnosis regardless of his professional judgment.

I was sceptical but couldn’t find anything clearly saying he was wrong despite hours of searching for relevant information online — most of the information I found was either specifically focused on children or came from other provinces or countries and wouldn’t necessarily be relevant to BC. In a later email exchange, this psychologist told me that psychologists in BC were not allowed to give a diagnosis if any ADOS sub-scores were below a certain cut-off score, but he said perhaps a psychiatrist could exercise more professional judgment. (I recently looked this psychologist up on the College of Psychologists website and discovered that his practice is now subject to restrictions: in response to a complaint, he acknowledged he has not kept up with current standards in this area and agreed not to do diagnostic assessments for autism in the future.)

Based on what he had told me, I made an appointment at my primary care clinic to ask for a referral to a psychiatrist. I spoke to a family doctor and then a mental health counsellor. The counsellor tried to find a psychiatrist who could do autism assessments for adults but told me during a follow-up appointment that she wasn’t having any luck. However, she knew a psychiatrist who did ADHD assessments for adults and suggested ADHD might be worth looking into, because she thought it made sense that there might be a neurodevelopmental issue underlying my anxiety.

I didn’t really think I had ADHD, but I hadn’t given it much thought and figured I might as well look into it — after all, I wouldn’t have to pay for it, because I would be seeing medical doctor rather than a psychologist. The process was surprisingly quick and efficient: I got a referral in early December, filled out a detailed intake form, and had an appointment in mid-January where the psychiatrist informed me that, unsurprisingly, I do not have ADHD.

Getting a diagnostic assessment for autism was entirely different. I still suspected the psychologist I’d seen previously was wrong about not being allowed to give a diagnosis, but I was having a hard time finding a clear answer to that question.

In October 2021, AutismBC had put on a presentation about adult diagnosis, which I had found out about in November, too late to attend. In January 2022, I went back to look at the information about the presentation, hoping I could contact the presenters to get more information. I was pleasantly surprised to find a video of the entire presentation, featuring Dr Grace Iarocci of Simon Fraser University and Dr David Worling of Spectrum Works Consulting Group. I learned, among other things, that the psychologist I’d seen previously was wrong to say he was required to treat ADOS scores as definitively ruling out a diagnosis. I also learned that there was one psychiatrist in BC who did autism assessments for adults, Dr Tony Bailey, but he would be retiring soon.

I decided to contact AutismBC for a list of psychologists who do adult autism assessments (as I should have done in the first place). I also wanted to sign up as a member so that I would get information about future presentations like the one I’d initially missed. But I got stuck when I had to choose a membership category: the options were (1) Autistic Adult, (2) Professional, (3) Family Membership, or (4) Autism Community Ally. Obviously option (1) was the correct one, and I suppose I knew it at the time, but because I didn’t have I diagnosis I felt I needed someone to tell me it was OK before I signed up. So I asked, and I was told (of course) to select the first option.

I was also given information about the Getting Together on the Spectrum virtual meet-up group for autistic adults, which I decided to attend. The first time I joined, I was nervous about the fact that I didn’t have a diagnosis. But it turned out a lot of other people there were self-diagnosed as well, and others were very accepting of self-diagnosis. It has been a while since I attended, mainly because the Wednesday time slot makes it difficult to fit in between work and water polo, but I found it very helpful to talk to other autistic adults, including some who, like me, were trying to get an official diagnosis.

Once I got the list of psychologists, I started looking for more information about them online and picked a couple to contact. Dr Iarocci was on the list, but her waitlist was extremely long, so I decided to look for someone who could see me sooner. I contacted Dr Worling’s clinic and got on a waitlist, and I got on one other waitlist with another psychologist. I meant to get on more waitlists but never got around to it. After the experience I’d had with the previous psychologist, I found it stressful trying to decide whether to trust other psychologists. I asked some questions about their process for diagnostic assessments but still worried that I didn’t know what I was getting into.

I spoke to the mental health counsellor at my primary care clinic again and told her about the video of Dr Iarocci and Dr Worling’s presentation. She suggested trying to contact Dr Bailey to ask if he was taking new patients, saying the family doctor could give me a referral if he was. Dr Bailey was a professor at UBC, so I was able to find his email address on UBC’s website and contacted him. He got back to me quickly but said he was retiring in a few months, and his wait list had closed a couple years earlier. And he wasn’t aware of other psychiatrists in BC who did autism assessments for adults. He suggested seeing a psychologist and specifically mentioned Dr Worling.

Waiting

I got on the waitlist for Spectrum Works in early February 2022. I was told that their current wait time was 18 months. (The other psychologist whose waitlist I was on said the wait time was uncertain but could be 6 to 8 months. I haven’t heard anything further from her over a year later, and the information on her website about adult autism assessments has been taken down, so I’m glad it wasn’t the only waitlist I was on.)

Shortly after that, I decided to get on some waitlists for counselling with psychologists and counsellors who are knowledgeable about autism, rather than waiting for a diagnosis. I wish I had done so sooner, since I think it could have helped me prepare for the diagnostic assessment in addition to dealing with other issues.

Several months went by, and then I heard from the Spectrum Works clinic administrator in early August, much sooner than I’d expected. She asked me to fill out an intake form and told me my assessment could be scheduled for the fall.

Preparing for the assessment

When I heard from the clinic administrator last August, it had been almost exactly a year since I started looking into getting a diagnosis. In some ways, I had been preparing for my diagnostic assessment since then, reading about autism, observing my own thoughts and behaviour, and thinking about past events that might be relevant. I wrote out answers to questionnaires I’d found online and in books, wrote down relevant things I observed or remembered, and tried to organize this information in a way that would help me get a diagnosis.

I started working on my intake form right away. There were some very straightforward questions that I answered quickly and easily. There were others I couldn’t answer at first because I needed information from my parents: questions about family history, my mom’s pregnancy, and my birth and early childhood. Some parts I put off because they seemed time-consuming, like a detailed employment history. But the hardest part was the very first question, which I answered last: “Reason for seeking an autism assessment”.

I assumed Dr Worling wanted to know both why I thought a diagnosis would be helpful and why I thought I was autistic. I saw this as my best chance to give him as much relevant information as possible about how I met the diagnostic criteria. But I wasn’t sure how much detail was needed or which details were most relevant. I worried about not providing enough information but also worried that I would include too much marginally relevant information and make it hard to find what was most relevant.

In mid-August, I was told my assessment could be scheduled for October 13. I had a couple weeks to confirm the date would work.

This meant, among other things, I would need to identify at least one other person (referred to as an “observer”) who could talk to the psychologist about me. I knew my mom would have the most relevant information, but she seemed nervous about talking to a psychologist. My dad said he could do it, but I didn’t think he would be able to provide much information, since my parents had split up when I was three, and he had moved to Australia when I was seven. I don’t have older siblings. My sister, who’s two years younger than me, was willing to do it, but she wouldn’t remember much about my early childhood.

The observer didn’t have to be a relative: I was told it could be a spouse or roommate (neither of which I have), an employer (which I didn’t feel comfortable with; even if I did, I probably camouflage my autistic traits enough at work that their observations wouldn’t be helpful), or someone else who knows me well, but I didn’t feel that I had given anyone a chance to get to know me well enough to be able to provide the information needed.

We eventually decided that my mom and sister would both participate. The clinic arranged for them to speak to Dr Worling by videoconference just before my in-person interview with him.

By the end of August, I had confirmed the assessment date, but I still had the intake form to fill out. And, in early September, I received links to various online multiple-choice questionnaires I had to fill out. My observer also had to fill out some questionnaires, which we decided my mom would do with input from my sister.

I made some progress on the intake form, gathering the information I needed from my parents about family history and my early childhood. I filled out the employment history portion, providing details about the paper route I had as a teenager, various summer and part-time jobs I had as a student, co-op education jobs from law school, a few different full-time jobs I held after graduation before I became a lawyer, and my current job. But the “Reason for seeking an autism assessment” question remained unanswered.

I started working on the questionnaires. I find multiple-choice questions frustrating, because sometimes none of the answers is quite right (or more than one is), and sometimes they are poorly worded, and I wonder if I am supposed to take them literally or try to guess what they are really trying to ask. There was no place to add written comments in the questionnaires. I thought about keeping a list of comments and sending an email, but I wasn’t sure it would make much difference, and I worried about spending too much time on it when I still had the intake form to do.

By late September, the clinic was somewhat concerned about the fact that my intake form still wasn’t completed. If I didn’t get it done soon, my assessment might not be able to proceed as scheduled.

I did my best to answer the “Reason for seeking an autism assessment” question, briefly explaining why I thought a diagnosis would be helpful, but mostly focusing on why I thought I was autistic. I went through the information I’d compiled previously, but tried to be selective, leaving out points that seemed only marginally relevant and trying to avoid repetition. My final answer was 3,769 words, which I made it clear was not intended to be exhaustive. (Possibly that was too much, but I figured too much was better than not enough.)

I decided to go to Vancouver the day before the assessment and stay over the night after, to avoid getting stressed about travelling on the day of the assessment. I figured there would be other things I’d want to do in Vancouver while I was there, but I was so tired I didn’t have a chance to do much other than go out for meals and do some early Christmas shopping for my nieces and nephews at the Canucks Team Store. On the day of the assessment, I went to Dr Worling’s office and spent two hours with him, with a brief break in the middle. He had spoken to my mom and sister by videoconference just before that. He said he would let me know if he felt he needed any additional information, but I didn’t hear anything further until my feedback appointment four weeks later, when he confirmed my diagnosis and provided more information about my assessment results by videoconference. I got a written report about a week later.

What now?

It’s been a few months since I got my diagnosis. I think it will take more time to figure out what to do with that information and appreciate its significance. After the lengthy process and all the work I had put into learning about autism, I wasn’t surprised by the diagnosis. I had imagined I would be excited to finally have it confirmed, but mostly I was just relieved — I was more excited early on, when I started figuring it out for myself and finally had an explanation for the burnout and other issues I was dealing with. I am happy to have the diagnosis, but now I have to think about what to do next.

So far, I think the main benefit of having a diagnosis is that it has made me feel more comfortable talking about my autism. I’d previously told a handful of people that I was looking into getting a diagnosis, but I was reluctant to discuss it more widely. I worried that people would be sceptical of a self-diagnosis, or that they would at least expect me to explain why I thought I was autistic. Without an official diagnosis, I would feel pressure to justify my self-diagnosis. If people question it now, I would question why they think they know better than a professional psychologist.

One of the concerns that led me to seek an official diagnosis was that I would need it to get accommodations at work. Figuring out what accommodations may be needed, never mind getting them implemented, is a slow process. Having to keep up with work, while also trying to take better care of myself and avoid getting burned out again, has probably made it slower. I don’t know to what extent I will need formal accommodations in the long run — maybe my needs can be addressed informally now that my boss and many of my co-workers know about my diagnosis. We are still figuring things out, but I am hopeful that having a diagnosis will help me continue working productively without neglecting my own well-being.

I hope that knowing more about my autism will help me avoid a recurrence of the burnout I experienced in recent years. And, if it continues to be an issue, I hope that having an autism diagnosis will help to avoid incorrect diagnoses or inappropriate treatment. Perhaps it is too early to tell, but I am hopeful, and I am grateful to AutismBC for helping me figure out how to get a diagnosis.