Being diagnosed with autism as an adult in Alberta

Last week, I was diagnosed with autism. When I announced it on social media, one person asked me to blog about the process I took to get my diagnosis. So here we are.

Getting a diagnosis requires getting an assessment. There are 2 problems with getting an assessment, however.

First, there just aren’t a lot of specialists who can do it. Only psychiatrists and registered psychologists can diagnose mental conditions. Even then, not all of them are willing to assess for autism, and certainly far fewer specialize it. That’s further complicated by the fact that most of those who do assess people focus on children.

Second, it’s cost prohibitive. For some unfathomable reason, assessments aren’t covered by Alberta Health Care. Not even my private health insurance covered it. And most practitioners I found charge between $2000 and $3000. Who has that kind of money lying around? Don’t they know autistic people are poor?

The first step was the hardest. I tried asking our family doctor for a referral, but she was convinced that there was no one here in Lethbridge who could do it and I’d have to go to Calgary. So, I had to do the research myself. That’s how I found out how expensive it is.

One frustrating part about the information gathering phase is that not everyone publishes their fees on their website, so you have an initial consultation, which can take up to an hour, only to find out that they’d charge you several thousand dollars.

There also doesn’t seem to be a list of currently practicing autism professionals in Alberta. If there is, it’s not easily located. I ended up scrolling through a bunch of websites trying to track down specialists and asking professionals I knew for referrals. After several months, I finally found a handful of practitioners who assessed adults, but they were all out of reach, so I figured it’d be a long wait.

But then, in March, I was talking to someone, who mentioned two local practitioners who do assessments. I brought those names to my doctor and asked for a referral. She said she’d leave it with her nurses. I got a phone call not long after my appointment with my doctor, and the nurse I talked to said that they couldn’t make the appointment for me for some reason. I had to do it myself.

So, I reached out first to Dr. Janice Sutherland at the The Memory Clinic, which is located on The University of Lethbridge campus. Her clinic told me they do adult assessments, so I booked a free initial consultation.

I contacted Dr. Sutherland during the first week of April, and my initial consultation was the first week of May.

At the consultation, Dr. Sutherland got to know me a little bit and conducted a questionnaire. After she tabulated the results, she noted that my score was above the threshold for being assessed.

My assessment was just two weeks later. It lasted over 2 hours, and Dr. Sutherland conducted several tests, both for autism and for other conditions, such as ADHD, anxiety, depression, OCD, and sociopathy. A lot of the questions revolved around childhood, interacting with others, and behaviour.

Because I’m in my 50s already, she skipped the neuropsychological evaluation she normally does, as she doesn’t think it would provide me with any useful information, given than I’m not in school.

At the end of the session, she concluded that I definitely had autism; however, she was going to go through all the questionnaires and her notes and compile it all into a comprehensive report, including recommendations. We don’t have an appointment set to follow up on the report, but she said it would take a week or two to put it together.

I haven’t paid for the assessment yet. She said I could wait until our follow-up, once I have the report. I don’t know what the final price will be, but I do remember her saying $600 during our initial consultation, which is far more affordable, but could still be out of reach for a lot of people. That being said, Dr. Sutherland did indicate that she’s willing to take payment in instalments, but I don’t know how flexible the schedule would be.

So that’s my journey into getting tested for autism. Hopefully, that’s helpful for some people.

Being diagnosed with autism, just like when I was diagnosed back in 2018 with ADHD, really explains a lot about my life growing up.

I struggled a lot with making friends, but I always attributed that to the fact that my parents moved around a lot when I was young, so I was in a new school every other year; I was often the new kid.

I still struggle making friends. In all honesty, I don’t have any friends. Not in any real sense of the word. No one phones me or chats with me just to see how I’m doing, certainly not regularly. No one wants to hang out with me regularly. No one shares their struggles, fears, or secrets with me.

Well, no one I’m not married to.

But I’m not complaining. I’m just observing. I really don’t care if I have friends. I’m totally fine just hanging out at home. I mean, I do things socially with people, but a lot of it is because I’m president of a local charity that organizes those events. I probably wouldn’t be doing these things if I wasn’t.

Of course, people are friendly when we chat, but I wouldn’t really call any of them friends. Most certainly, I don’t have a best friend. Again, no one I’m not married to.

I’m grateful I served a Mormon mission back in the 1990s. I’m not sure if they still do it, but they used to have a programme they’d have missionaries follow to improve their interpersonal skills: how to make chit chat, make eye contact, ask questions, restate statements, build on common beliefs, and so on.

This has served me so well in my post-mission life, and I draw on these skills all the time.

Because I served my mission in Utah, I got to teach a lot, which gave me a lot of experience practicing these skills. And because Utah missionaries cover a lot of congregations (several dozen sometimes) we often got asked to speak in church services. I probably gave dozens of sermons. This massively improved my public speaking skills.

On the topic of being married, having Mary as a spouse has been a huge blessing. Even though she had no idea that I have autism, she has been so patient with how it manifested in me. She also encouraged me over the years to be careful how I communicated, like using emoticons in my emails or if I had said something unkind or rude to someone.

I’ve learned a lot over the 30 years we’ve been married that I have a pretty good idea how to react in certain situations. She has been amazing. I can imagine that a lot of other people would’ve been so easily exasperated with me.

I also get frustrated with things that are out of place or don’t make sense. A lot of the time, that frustration is just being annoyed, like if the two switches on the lightswitch at the bottom of our stairs aren’t both pointing in the same direction or the dishes aren’t put away in the cupboard in their proper spot. Same with groceries.

Sometimes, that frustration is more intense. Like last week when I was talking to a life insurance adjustor who kept asking me questions that I couldn’t answer.

For example, at one point, he asked me for my height. I told him that I’m 6′2″. Then I realized that maybe he uses metric, so I also told him I was 188 centimetres. He said he couldn’t use both then asked me which I prefer.

This is the thing that neurotypical people don’t seem to understand about autistic people. We take things literally.

So when you ask me whether I prefer my height as imperial or metric, and I actually have no preference, that’s what I’ll say. But then he kept insisting that I had to pick and to tell him what my preference was. We went back and forth on this for several minutes. I finally asked him which option came first on the form, and he said imperial, so I told him, well then let’s just pick the first one.

Later, when I disclosed that I had a lump in my breast (it wasn’t cancerous and has been gone for 20 year or so now), he wanted to know when it was. I knew that we had gone to a family reunion in the summer of 2004 and that I had been examined prior to that, so I told him it was before August 2004.

So, he assumed that meant July. I told him that it might have been July, but I couldn’t say for sure. For all I knew it was January. Then he told me that I had to pick. But I couldn’t pick, since I didn’t know when I was tested and certainly didn’t know when I first noticed the lump.

We went back and forth again: his insisting that I had to be specific, and my assuring him that I had no idea, that it was over 20 years ago, and I no longer remembered.

Finally, I said, “Okay. I’ll just randomly pick May.” Then he had the gall to say, “I’ll write down that it was May 2004 to the best of your knowledge”. I told him that to the best of my knowledge, it was before August 2004 and that I couldn’t remember anything more specific than that.

That experience reminded me that I hate surveys: they often ask questions then give you answers to choose from but none of them apply.

On top of that, he told me it would be 20–30 minutes, and the entire thing went over an hour. Don’t tell an autistic person that something will start or end at a certain time, because they’ll expect you to keep to it and will get frustrated when you don’t.

Which reminds me of an appointment we recently had with a banker who said our appointment would take a certain amount of time, but then it went way over. I ended up very frustrated, and I was short in my answers. It wasn’t just going over that frustrated me; I had planned to make black bean burgers for supper that night, but now because we went so long, I wouldn’t have time to make black bean burgers. And I was really looking forward to them.

Speaking of being short with something, I’ve often been described as intimidating or unkind. And the people who label me as such do so to Mary, not to me. People have complained about my emails being too short, or being anal about grammar, or being argumentative, or interrupting, or not talking in social situations.

Over the years, I’ve learned to write in a way that is less pithy, I got paid to correct grammar, I argue a lot less now (especially if it ends up becoming circular), I interrupt a lot less (although it gives me a little anxiety bottling it up inside), and I’m a little better at initiating conversations. I still have a tough time talking to someone for the first time though, especially if I have to start the conversation.

Once, when I was a teenager, I was on my way home from visiting my maternal grandparents for a week. The Greyhound ride back to Regina was about 3 hours or so, and I was seated across from a girl around my age, who I thought was cute. I spent the entire trip trying to figure out how to start a conversation with her. And I never did talk to her before she disembarked in Moose Jaw.

I am pretty sure my NDPH is a result of my teeth clenching, which is something some autistic people do to deal with stress. Like stimming. And it’s been accumulating over the last 5 decades, leading to the constant headache I’ve had since March 2023.

Anyhow, I’ve gone on long enough. Even then, I’ve only barely scratched the surface of what living with autism is like. But you probably have things to do.