Have you ever been given directions by two different people at the same time and felt utterly confused about what to do? Have you ever been sure enough of yourself but had to rely on someone else’s information to know for sure? Welcome to the state of publicly available autism research. No offense is intended. In August 2019, my counselor’s hunch proved to be correct. I was autistic.
In the weeks afterwards, she and I spent several appointments diligently searching the internet for autism research articles. I wanted to know what autism actually was. Before the assessment, I had heard of it, but that was the limit of my knowledge. I also felt I needed to know because my counselor had such a hunch about me being autistic. What we found was a collection of articles by mental health professionals that tried to explain autism.
By early 2020, general counseling felt less effective, and my social problems continued unabated into the New Year. In March, when the lockdowns forced in-person counseling to be virtual-only, I discontinued services with my care provider and switched to a new one. When I was finally assigned to a new counselor five months later, I prioritized understanding autism because I felt a need to know.
My new counselor and I spent our appointments diligently searching the internet for autism research. We found a number of different articles by mental health professionals that tried to explain autism. She encouraged me to search on my own too. I was still unable to make sense of it. Then, in 2022, discovering that autism influenced neurology was the key to understanding it. But I was unable to ignore what I saw as a serious flaw.
Although my first counselor herself admitted that she was inexperienced with autism, her hunch and initiative to act made all the difference in my life. My second counselor was more experienced, having worked with autistic clients. Instead, mental health professionals were publishing autism research that was inconsistent and incomplete. Some of them overlapped in their descriptions of traits, but collectively they were too confusing.
At this point, I realized these professionals were well-educated. For this exact reason, the inconsistency problem became an unresolvable paradox. I had no way of knowing who to believe, and there was no one else with experience to turn to for understanding autism. This set me back almost three agonizing years! Three years is a painfully long time. I feared what would happen to other autistic people.
In September, I came across a woman on Twitter who had recently been diagnosed as autistic. She explained that she had tried searching the internet for publicly available research, just as I had. It was too confusing for her to understand autism. So she hid her diagnosis. Then, something very disruptive happened that wrecked her life directly because of it. When I came across her story on Twitter, I felt both validated and appalled.
Both of us were competent people, not to mention adults. What if it was the parent of an autistic child? How many of them have to figure it out for themselves? What is actually out there for any of us to know what we are dealing with? Do tell. If we are unable to determine enough about what autism is from experts, then the scattered state of autism research needs an overhaul and we need to be included.
Not 30 years from now. Not 10 years from now. Now. A complete reevaluation of existing autism research data is needed to resolve this problem. Possibly existing autism services as well. If what is out there is equally ineffective, it will continue to do more harm than good.
#LetThatThinkIn
Welcome to the next Autism Experience.
I Overthink Therefore I Am.
