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Better Late than Never, Perhaps: Getting a Late ASD Diagnosis

Cheryl Cohen
Online Community Director
July 20, 2015

Every day I respond to questions and comments from IAN Community’s many readers. I don’t dispense medical or psychological advice, but I act as a librarian to guide people through the complex maze of information about the autism journey. To paraphrase Star Trek’s Dr. McCoy, I’m an editorial director, not a doctor.

Now that the world is becoming familiar with autism and its symptoms, many people are finding autism-like traits in themselves or others. One request that I receive quite often comes from adults who suspect that they or an older loved one may have ASD. They want to know if they should seek a professional diagnosis and where to get one. They want to know how to get that “Aspergery aunt” to go for a diagnosis. They may have a child who was just diagnosed and wonder whether they, too, have ASD. They also want to know how to get help and services.

Researchers are finding evidence that autism affects adults at the same rate as children. In a study published in April 2015 in the British Medical Journal, researchers examined the medical records of people born in Sweden from 1993 to 2002.1 (Medical records in Sweden are comprehensive and uniform for the entire population.) They found that there was no increase in the percentage of children with autism symptoms, but a significant increase in the number of people given an autism diagnosis. So, instead of an autism epidemic, that study and others suggest that there is a change in how autism is being diagnosed. This leaves the world with a lot of adults with the symptoms and struggles of autism, no diagnosis, and even less community support than those with a diagnosis. Regardless of whether there is a true rise in the number of people with the symptoms of autism, an increase in the diagnosis and recognition of autism, or both, it is time for the world to provide better services to enable late diagnoses and appropriate support.

And now it’s time to put my librarian’s cap back on. There is not a lot of information about getting a very late diagnosis and very few community resources. But, here are a few articles that may provide some guidance:


  1. Lundström, S., Reichenberg, A., Anckarsäter, H., Lichtenstein, P., & Gillberg, C. (2015). Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samples. BMJ : British Medical Journal, 350, h1961. doi:10.1136/bmj.h1961.