Research Spotlight: Study finds missed opportunities tied to late diagnosis

Study finds Autistics diagnosed in adulthood report having almost three times the rate of psychiatric

diagnoses than those diagnosed as children raising questions about clinicians' familiarity with Autism, possible misdiagnoses, and implications for research.

Researchers Dr. Vanessa Bal and Nikita Jadav of Rutgers University published in August in Autism Research finding a stark difference between the self-reported co-occuring psychiatric diagnoses between independent Autistic adults diagnosed under the age of 21 and those adults diagnosed after 21. Bal and Jadav found that those diagnosed later in life had also been diagnosed with about three times the amount of other psychiatric disorders including depression, anxiety disorders, personality disorders, and more. The findings raise questions about the implications of the findings for clinicians and researchers.

Chickens and eggs, again.

One of the questions raised by the study is the research fan fav chicken vs egg. In this case, why are Autistic adults who are diagnosed later getting diagnosed with more psychiatric conditions? Possible explanations are:

• Late diagnosed Autistics were misdiagnosed earlier in life with conditions that look like parts of Autism.

• Late diagnosed Autistics actually have more conditions than those diagnosed earlier in life.

• Early diagnosed Autistics are under diagnosed with other psychiatric conditions.

Looking at each of these possibilities one at a time, all lead to the same place: we have an issue in the clinical community where therapists, psychologists, and other diagnosticians are missing opportunities for Autistic children and adults. In the first case, if late diagnosed Autistics were misdiagnosed earlier in life, this is because when they presented for care, the professionals serving them didn't see their Autism. Autism isn't often a topic that gets a lot of depth of coverage in education programs, so it's an area providers would be seeking out education and training in. I remember in my 2015 program asking about Autism during a course one diagnostics. My truly excellent and well trained (in other respects) professor answered by saying Autism is a condition of childhood and (as we were in an adult focused program), we wouldn't be seeing Autistic people--even as adults--because they aren't likely to get talk therapy services.

If the third case is true, it also means that clinicians aren't addressing Autistic clients holistically. Some providers may address issues as being just a part of Autism. Co-occurring disorders are very common in Autistic people of all ages. Autistic people deserve to get the best care possible, and that means treating all of their conditions. Research also needs to accurately reflect the issues in order to inform practice and policy. That leads us back tot he second possibility.

If the second case is true--that late diagnosed Autistics indeed have more mental health conditions than their counterparts, then the system is failing Autistics. Knowing that one is Autistic means having a community of other people who understand you. It means getting support that is designed for us. It means understanding one's self, which is a means towards self-compassion. Knowing that you are Autistic is a measure of peace and connection. It's vital that clinicians are trained to see Autism.

My suspicion is that all three of these possibilities are contributing to these findings. This is information that many Autistics have gathered anecdotally from their peers in social and online spaces. Having research to first ask and answer these questions matters because research is a key to change.

Implications for Research

Research is more than just cool data points and interesting cocktail party conversation starters. Research is used to fund change. Research is how we get better services and make legislation. This study means that past research on co-morbid conditions is less useful if the study didn't define when the participants were diagnosed. It means that future researchers need to consider the importance of including that information in their data collection.

This study is a very important starting point. It confirms something that Autistic people have already deciphered. It raises these questions, but it's up to future researchers to keep digging to provide confirmation of what Autistic people already know.

The study report is available as open source in its entirety. The report is well written and considers content that I didn't expect to see. Often research on Autism topics miss connections that Autistic people see. When I consulted with Dr. Bal about the research and report, she stated, "while we are increasing including autistic collaborators on other projects, this one did not." The study was funded by SPARK.

It's clear to me that some neurotypical Autism researchers are listening to Autistic voices, including us in their planning and discussion, and keeping the lessons learned from Autistic wisdom.