AAP Voices Blog

Late Autism Diagnosis: Blessing or Curse?

I was definitively diagnosed autistic at 17 years old. A psychiatrist I saw around this time offered the opinion that I benefited from growing up without the autism label. I could not have disagreed more. I was angry and bitter, still smarting from all the years of being misunderstood and mistreated. I was filled with too much self-pity to see my situation as lucky. Problems with my development were identified during infancy, but no one appeared capable of pinpointing exactly what was wrong with me.

The consensus seemed to be I had a learning disability. In the decades since my diagnosis, I’ve come to see that the psychiatrist – who I so vehemently disagreed with – might have had a point. As challenging as things were for me growing up, I basically had a normal childhood.

The problems I did have were dealt with in normal ways. For instance, I had a hard time learning how to read, and even after I got the hang of it, I still was not much of a reader. Fortunately, my mother was an academic who got me into the habit of reading.

Research has shown reading literary fiction can improve one’s ability to empathize. Part of the effect comes from the process of delving into the interior lives of characters and being immersed in their perspectives. Now I wonder if there is a more direct link between dramatic irony and Theory of Mind.

In addition to talking to me about the books I read, my mother also analyzed the movies and TV shows we watched. Without necessarily being aware of it, my mother taught me the nuances of socialization as she explained the meaning of certain scenes or the interactions between different characters. The movies were social stories with special effects.

Through programs like Operation House Call at the ARC of Massachusetts, I’ve been invited to share my experiences with the health care system at medical schools, nursing schools, and schools of social work. When I speak to future health care professionals, I talk about the role reversal that occurred when my mother was diagnosed with lung cancer, and she became the designated patient and I the closest family member of the patient. Cancer trumped autism with the latter only being relevant when considering how it might impact my ability as a caregiver.

“Diagnostic overshadowing, or the failure to see beyond a diagnosis such as autism, is so seductive that I almost fell under its spell.”

I like to tell two stories that I think are instructive. The first story draws a contrast between two doctors: one who recognizes the wisdom of patients, and the other who acts like only they have the answers. When my problems began to escalate during my teenage years, my mother told one of the first psychologists she took me to about the Autism Residual State diagnosis I had received at 11 years old. The doctor immediately dismissed that as being ridiculous. He settled on Social Phobia.

When I ended up in the adolescent ward of a neuropsychiatric hospital, there was a psychiatrist who was more willing to listen to what my mother had to say. In fact, he felt an intellectual affinity with my mom and treated her almost like a colleague. He told her about an anthology that had just been published called Autism and Asperger’s Syndrome.

The second story I like to tell burgeoning health care professionals highlights the insidious nature of diagnostic overshadowing. Diagnostic overshadowing, or the failure to see beyond a diagnosis such as autism, is so seductive that I almost fell under its spell. At one of my periodic check-up appointments with my psychiatrist, the routine taking of my vitals revealed slightly elevated blood pressure. The next day at a disability conference, someone made an off-hand remark that people on the autism spectrum tend to have faster heart rates. I came dangerously close to thinking that because I’m autistic, my blood pressure is supposed to be high.

Autism doesn’t immunize me from the laws of physiology. High blood pressure is dangerous, and I need to watch my diet and exercise regularly like everyone else. If my proneness to anxiety puts me at greater risk, I can address that in ways unrelated to autism. In the last few years, I’ve found the practice of mindfulness (focusing on the present moment in a non-judgmental way) calming to my restless mind, thereby helping manage stress and high blood pressure.

I no longer harbor regrets about not being diagnosed autistic sooner. I’m glad that today more children are being identified early even when they’re verbal and don’t have an intellectual disability. However, I’m also concerned that the label could become a leash; I’d hate for kids to be held back based on a priori assumptions about what they can and cannot accomplish simply because of autism. At best, autism should explain the reason behind certain behaviors and challenges without becoming the reason a child doesn’t engage in activities. The diagnosis should be a floor, not a ceiling.