Helena Mary Cole

Right before the first pandemic lockdown hit, my brother’s daughter Gemma was hospitalized for an eating disorder. I was grieved, worried, hoping and praying that she was going to be all right. It was especially difficult to go through all that on top of the confusion surrounding COVID. But I didn’t know that an even bigger bomb was about to hit my life as result of her disorder. I had no idea that events were now in motion towards my getting an autism diagnosis.

Now, my son Clark is the first close relative of mine to get diagnosed autistic. In his case, the signs of autism became apparent by the time he was 18 months old, but as doctors don’t like to diagnose until a child is two years old, we waited an addition six months before we knew for sure. Not only is Clark autistic, but he has the apraxia of speech that sometimes comes hand in hand with that. In other words, he is non-speaking autistic. Because his autism manifests in this highly visible way, so that anyone who meets him knows within a moment or two that something’s up, I was unable to see the possibility that I could be on the spectrum, too.

I mistakenly assumed that if there were anything more I needed to know about autism, that I didn’t know already, the doctor would tell me. No one told me that doctors hardly tell you squat when they diagnose you or your kid with a disability, that it was on me to learn about Clark’s condition, that if I didn’t take it upon myself to find out more, it was never going to happen. I didn’t even hear the term “apraxia” until I came across it in my own research six years up the road. The idea that a person could be autistic with apraxia, or autistic without it was never explained to me. Also, no one ever told me that autism is largely caused by genetics. To be clear, the causes of autism are still being researched and will probably never be fully understood, but genetics play a big role – that much is established.

In short, nobody ever told me that I needed to look into whether or not I could also be autistic. Some pediatricians do encourage parents to consider the fact that their child’s autism didn’t just spring up out of the ground out of nowhere, that it probably got passed on by at least one of them, but ours didn’t.

When our second son Lance was born, we weren’t concerned about autism. Lance was very different from Clark, and we didn’t see him missing the same developmental milestones that Clark had missed. We made the mistake of assuming that because he wasn’t like Clark, he must not be autistic.

We had a very limited idea of how autistic traits manifest in children.

That’s how, when my niece Gemma was diagnosed in the summer of 2021, more than a year after her hospitalization and only a few months after my daughter Leah was born, the news blew me out of the water. If Gemma was autistic, that went against everything I knew about autism. I was unaware of the link between eating disorders and autism, and that Gemma was automatically going to be screened for it. She wasn’t a thing like Clark. What was more, far from being non-speaking, Gemma had been a precocious talker, able to speak in full sentences by the time she was two. And, what was even more unsettling than that was the fact that Gemma had always reminded me forcibly of myself, especially when it came to how she conducted herself socially.

My world flipped completely upside down. I was walking around in shock yet unable to think about anything else. If Gemma was on the spectrum, then could I be, too? The idea seemed impossible, yet the similarities between us were also impossible to overlook. So, I went online and took the famous Autism Quotient (AQ) Questionnaire. When it came back positive, I was still unable to accept the possibility. I dismissed my AQ results, thinking, “Whoever wrote that quiz doesn’t know the difference between autism and introversion.” That was how I had seen myself up to that point: an introvert who was also a “highly sensitive person” with social anxiety disorder. And so the ground quaked beneath me again when I learned that “highly sensitive person” is not a highly respected term by psychologists, and it’s a known gateway to an autism diagnosis.

Before I knew it, I was “down the rabbit hole,” as many late-diagnosed autistic adults call this phase of discovery. I started gathering as much information about autism as I could get my hands on. I ate and breathed autism. I read a stack of books on the subject two feet high. I listened to as many autistic adults tell their diagnosis stories online as I could find. Within a few months, the coin finally dropped: I became very sure I was autistic. But I wanted to know with 100% certainty. I decided to seek a professional opinion.

<sigh> It grieves me to tell this part of the story. It is very difficult to find anyone willing to diagnose an autistic adult, in this part of the world at least. The first psychologist I contacted was very keen to help me get Lance a diagnosis (I was pretty sure he was autistic by this point, now that I knew more about the subject, and I made the mistake of mentioning that) but not at all interested in assessing me; the second asked me to find someone else when I asked if she’d diagnosed any women before; the second one rather doubtfully agreed to assess me, adding, “You know, sometimes what looks like autism is just social anxiety” so I decided I didn’t want to work with her, if she was going into the process with that much skepticism, without having even met me; the fourth absolutely insisted that one of my parents, or someone else who knew me well as very young child, come in and answer questions about my childhood as part of the assessment process.

I do understand that the diagnostic criteria for an autism diagnosis state that the traits must have been present from early childhood on, and so the presence of the traits in very early life needs to be established – I get it. But this is frustrating for a lot of people, who were young children in the 1960’s, 70’s, and 80’s, in a time and place when so little was known about autism, especially in how it manifests in girls, when no one was trained to recognize it, when no one was even looking for it, and unless you also had a severe inability to communicate by speech, no one would have even suspected anything was up. Those of us in that boat… Our parents are old by now, if they are even still alive. They may not even remember many things from that many decades ago, and so it can be very difficult for their adult children to be diagnosed formally. Not all diagnosticians will insist on interviewing a parent, but as this particular assessment was going to be paid for by the provincial insurance, I thought I might as well ask my parents if either of them would be willing to come in and answer the questions about my childhood.

I had already made the unfortunate mistake of talking to my mother about what I was going through, about my shock and discovery that I could be autistic, and she had already hardened herself against all possibility that this could be true. She point-blank and quite angrily refused to participate in the assessment. My dad agreed to do it. But I had concerns about my dad. He’s a few years older than my mom and is quite hard of hearing. He gets nervous when he’s on the spot; his memory isn’t what it used to be; at times, he gets mildly confused. All the usual stuff for a man who’s getting up in years.

At first, I thought I was only going to be waiting half a year for the government-covered assessment, but when I found out the wait was going to be more like a year and a half, some additional doubts popped into my head. If I was already wondering how well my dad would fare with the interview now, what was it going to be like a year and a half later? He’d be approaching age 80. I wasn’t sure I wanted to put him through all that. So, I decided to search for another assessment option. Again.

And I found one, right here in town, with a wait time of only a couple of months. But then they put me off three months, and another three months, and another three months, till I began to doubt they were ever going to be able to squeeze me in. And the search continued.

And then, at long last, I got an appointment with yet another psychologist in the next city who specialized in diagnosing autism. I waited two months to get a slot; I attended three testing sessions/interviews three Wednesdays in a row; this one wanted to interview my husband, not my parents, though I did hand over as many of my childhood school report cards as I could find. Then, I had to wait several weeks for the results of the testing. But at long last, on May 9, 2023, after a year and a half of searching and waiting, I received my diagnosis. I am a diagnosed autistic person, “and it’s not mild,” the psychologist told me, “I’d place you between level one and level two support needs, leaning towards level two.”

I had a big shock all over again. I thought, if I’d flown under the radar all my life, a clear level one was a given. Since then, though, I’ve heard of clear level two-ers going undiagnosed for decades. Another shock was getting a firm ADHD diagnosis. I had suspected ADHD as well for many months – I don’t know why I took it so hard. I’ll comment more on that later.

But it is worth noting that all three of my kids are also diagnosed autistic. My newfound, accurate knowledge about autism accomplished that for them, even if Lance didn’t get diagnosed till he was four and therefore he missed the opportunity to attend the local school for disabled kids Junior Kindergarten year. Leah got diagnosed at age 25 months – almost as young as possible, which is unheard of for an autistic girl of previous generations. She got her diagnosis only a couple of weeks before I got mine.

I used to wonder, years ago, before Clark was even a twinkle in our eyes, what in the world I was going to do to help my (as-yet unborn) kids “if it turns out they’re like me.” Well, now I can put a word on what “like me” means (autistic), and what’s more, I’ve already done the first thing in my power I can do to help them, and that is, I got them diagnosed early in life. It is a totally unlooked-for miracle.