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How getting an autism diagnosis as an adult changed me

Ethan Cross is the international bestselling and award-winning thriller author of eight novels, including the soon-to-be-released series debut of Spectrum. Learn more about Ethan's novels.

My wife had told me for years that I had Asperger’s Syndrome. Her degree was in early childhood education, and so she had seen several children with autism spectrum disorder (ASD) and had learned a great deal about it in her studies. Despite her observations, I always thought that she was merely joking about it and that maybe I had some tendencies of the syndrome. I think that my hesitation to accept that anything was different about me stemmed from a misconception of what ASD really was, how the disorder manifests itself, and how wide the spectrum truly is.

A lot of this came from my reading of the book “Born on a Blue Day” by Daniel Tammet, a savant who possesses some incredible mental abilities.  These range from learning the Icelandic language in a week to holding the world record for digits of pi memorized.  I knew that I wasn’t nearly as smart as Daniel, and all of the portrayals I had seen of Asperger’s syndrome in fiction and the media didn’t seem to fit me.

But when I started to write a new series of novels featuring a main character with ASD, the information I was finding through my research started to make all too much sense. So I decided on a whim to take some online tests to see if I might also have the disorder. The tests came back with a resounding “Yes.” I then decided to seek out professional help, but I was unsure of how to do so. I did some research on the Internet and discovered that a psychologist could provide an official diagnosis. Luckily, our church had recently retained the services of a psychologist to provide counseling and help to our members, and she had also worked with several adults and children with ASD. I made an appointment, and in preparation for the meeting, I made a list of areas where I saw the symptoms in myself and had my wife do the same. After taking some tests with the psychologist and doing a long and detailed interview in which we discussed my life from childhood to the present day, she officially diagnosed me with autism spectrum disorder.

Many people asked me why I cared about receiving an official diagnosis and said that it didn’t change anything. But for me, it was important to know. Not merely suspect or believe or wonder if it was simply in my head, but to have my suspicions confirmed by a professional. Despite having an official diagnosis, I still had people close to me who questioned the identification. One friend even went around telling others that his young son had to go through days of testing to be diagnosed, and that I couldn’t have been diagnosed without the same testing his son underwent as a child. This hurt me deeply, as if they were saying that I was making it up or didn’t understand my own challenges and feelings.

At first, I was hesitant to believe that I was different, that no matter how hard I tried, I would never be like “normal” (neurotypical) people. I started to examine many of the difficulties I had faced in my life and the choices I had made. The more soul-searching I did, the more things started to make sense. I wasn’t feeling certain ways because I was “broken” or a “freak”— I had autism spectrum disorder. This was a revelation that explained so much. I was valedictorian of my high school class, but I didn’t want to go to college because the social aspects and drama of school caused me so much stress and anxiety. I preferred to be alone, and I didn’t seem to feel things in the same way that other people did. Now, I realize I wasn't an anti-social monster, my brain was simply wired differently.

The problem came in when I expected my friends and family to understand. I received a lot of indifferent comments like, “It doesn’t matter,” “You’re still the same guy you were yesterday,” and “It’s not a big deal.” But to me, it was a very big deal. The guy I was yesterday was scared to death of people and suffered from intense anxiety and depression. I kept all these feelings locked away for most of my life, and I thought that now that I knew why I felt this way, others would show compassion and understanding … I was very wrong.

I don’t believe this is because my friends and family didn’t care, but more that they didn’t comprehend the struggles and pain I had endured over the course of my life. They didn’t realize what having ASD meant. I had developed coping mechanisms over the years to fit into “normal” society, and so people were shocked when they discovered my feelings of being an outsider.

Since then, I have decided to dedicate myself to encouraging adult diagnosis and trying to educate the general populace on individuals with special needs through my fiction writing. 

The best way I’ve heard this condition described is that people with ASD don’t suffer from the disorder…we suffer from other people.  

This may sound harsh, but let me expound upon that a bit. Imagine you were suddenly dropped into a culture far different from your own. Then imagine how exhausting it would be trying to live and work and socialize in that vastly different and many times “alien” world. That’s what it’s like for many people with ASD every day, and while we can develop coping techniques to function in a confusing and often frightening world, on the inside, it doesn’t ever seem to get easier.

I wouldn’t change my brain if given the choice. It’s a part of me, and I feel that it has given me unique perspectives on the world and been an advantage in many ways. But those advantages come at a price. One that I pay every time I step out into a neurotypical world.

My wish for anyone reading this who believes they may have undiagnosed autism is that you would realize that you are not alone. You are not a freak. Seek a diagnosis, come to terms with your own abilities, and find ways to overcome your unique challenges. As Aristotle said, “Knowing yourself is the beginning of all wisdom.”

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.