The Spectrum Perspective – Dealing with a Late Diagnosis

Dealing With Late Diagnosis

by Matthew Lemay

I was almost exactly a month away from my eighteenth birthday when I received a diagnosis that I never expected: Asperger’s Syndrome.

It was an accepted fact amongst my family and the rest of my inner circle that I had Obsessive Compulsive Disorder or OCD. After all, I had all of the classic signs: from my distaste for sudden change, to my incessant habit of collecting everything that interests me, to my compulsive need to write lists. If there were a list that doctor’s used in diagnosing someone with OCD, I’d have checked off every box. In fact, I’m pretty sure that, even today, I still would.


I went into the psychiatrist’s office that day expecting a formal diagnosis. And, I did get one. It just wasn’t the one I always thought it would be. Asperger’s Syndrome or any type of autism never once crossed my mind. Not even once.

To say I was stunned would be an understatement. My entire mind went blank for just a moment as I feverishly processed what I had been told. I was surprisingly calm. To have a name, to know that there was something medically wrong with me, that I wasn’t going insane, was more a relief than anything else, as shocking as what the said medical diagnosis implied in my mind.

All of my life, I had been woefully misunderstood. Accused at points of being cold and inhuman, I was very much a loner, with very few close friends. My philosophies, ideals and viewpoints had always been more suited for an adult twice my age than for a young elementary and high school student. That perhaps explains why, even now, I feel most at ease around older people than someone my age: my maturity level has always exceeded my age. As a result, I am often told by others that they believe me to be older than I actually am.

It was my maturity and my support system that made this unexpected development in my life easier to deal with.

And it’s that support system that will be most integral in dealing with the late diagnosis of Asperger’s Syndrome or any form of Autism Spectrum Disorder.

Many people who are diagnosed late have been, in reality, dealing with the symptoms for many years prior, as I was. This will lead to many doubts and questions. Those doubts are not easily silenced. Those questions are of the type that know no easy answer.

That is exactly why a strong support system is so vital. Those diagnosed with Autism Spectrum Disorder at a late age will doubt the fact that they’ve been living with this for years and will feel as though they changed at some point. They will question how this could have gone unnoticed for as long as it had been.

It is a strong support system of family and friends, an open dialogue with doctors and other medical professionals, and people like Pat, with the many programs and services that she and her organization offers, that will allow them to feel at ease with themselves.

For those who have been diagnosed late, please take it from someone who has been where you are right now, someone who has dealt with the doubts and questions that you have: you are most certainly not different than you’ve always been. It may feel like that, and it’s certainly a valid way of feeling in this situation, but you are still the same person, and no medical diagnosis should take that away from you, or make you doubt yourself in that way.

For those who form the immediate support system for those dealing with a late diagnosis of any type of Autism Spectrum Disorder: educate yourselves about their particular diagnosis, reassure the person that they are the same person in your eyes that they’ve always been, and just be there for them. They are going to need your support in this time.

Dealing with a diagnosis like Autism Spectrum Disorder at a late point in life is not exactly easy. But, with proper tools, those who have been diagnosed, and those who make up their support system, will be able to deal with it in as an effective manner as possible and can begin to live life as if the diagnosis doesn’t exist, secure in the knowledge that while it will never be gone, they have learned how to live with it and can deal with it when it’s more pressing symptoms emerge.


Matthew Lemay is an aspiring author and entrepreneur who has been writing for three-and-a-half years and whom is currently working on several writing projects. He has been living with the Asperger’s Syndrome strand of Autism Spectrum Disorder for over a year. He has been associated with Integrated Autism Consulting since very early on in his personal process of dealing with his diagnosis. He is a regular attendant of their Social Club program. He hopes to one day fulfill his dreams of authorship and entrepreneurship and use his resulting platform to advocate for others and support causes that he believes in. When he is not writing, he enjoys spending time with his family, reading, listening to music, watching films and television series, learning languages, biking and swimming. He currently lives in Barrie, Ontario.

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