Talking about my disorder helped my son — and me

I have lived most of my life in anticipation of being found out.

An avuncular friend pointed out that this is because I was born and raised in Ireland, and that might be part of it. But the larger part is that I have a communication disorder — I dislike the word disability. In short, every conversation I have, or have ever had, is a challenge.

I struggle to find the intended meaning in people’s words, and I cannot read body language. In the seconds it takes me to parse the meaning of the first sentence, the speaker is typically several sentences along. I am very lucky that I managed to carve out a career as a professor, where extensive questioning of one’s interlocutor is expected and even encouraged.

Until today, very few people were aware of my situation. I have been reluctant to share lest others think me incapable of meaningful conversation, perhaps to the extent that they slow down their speech to a level that, deliberately or not, amounts to mocking.

Over the years, I have developed strategies to cope with typical conversations and I am fortunate that I can now do so, albeit with the need to ask more questions than might seem necessary.

I have abandoned the body language issue as a lost cause; I rely on people saying what they mean, but shouldn’t we all? I have accepted that my brain is different, in some respects, from what is considered normal. While this has brought significant challenges, it has also contributed to the small degree of success I have enjoyed as a researcher.

I have faced challenges since early childhood, but I was in my 30s before I understood the full extent of how my interactions with others differ from the typical. I sought out help and, with that help, came a formal diagnosis of social communication disorder. I almost broke my silence in 2021, when one of the few people I had confided in threatened to out me. While I did not want to reveal my story out of fear alone, the occasion of my recent Dorothy Killam Fellowship seems as good a time as any and a better time than most.

The fellowship will give me time to work with my team of graduate students to develop models that will have important real-world applications. Both of my boys have autism, so I have a personal interest in applications to data on autistic children. Some of the models my team developed were used to identify developmental trajectories for autistic children in collaborative, multidisciplinary work that was published last year in the Journal of Autism and Developmental Disorders.

With the support of this fellowship, my team and I will build more sophisticated models so that, hopefully, the phenomenon of children switching between developmental trajectories — why the path they’re developing along sometimes changes — can be investigated.

When I first chatted with my youngest son about some of the challenges I face, I was struck by what a difference it made to him to hear my story.

It was not that he thought I have autism. He didn’t and I don’t. Rather, he had never heard another person describe how they found interactions with the world around them challenging. Hearing my level of comfort with not being considered normal visibly moved him. His reaction gave me the nudge I needed to finally write this.

There was a time in my life where I would go to lengths to avoid conversations and interactions. Too often, I would stay silent at times when I really should have spoken. Although some will surely deny it, there is a degree of tyranny in the expectation of normalcy. People should be more accepting of others for who they are, instead of trying to coerce, treat, or medicate them into some preconceived ideal of communication and behaviour. I don’t, and never will, grasp what that is supposed to achieve.

As I child, I read a poem in school entitled “A Red Letter Day,” by the Irish poet Justin McCarthy. The second-last line, “The lingering echo of thy exquisite voice,” made me smile as I imagined a situation where I would have several opportunities to try to understand each sentence aimed at me. Now, that would be a red-letter day!