Standing in the living room of my apartment, with the cell phone resting against my ear, I had to blink twice when I heard what was being said to me at the other end of the line. It wasn’t the news that I got disqualified from an adult research study from an NIH Autism Center of Excellence. It was the reason why I got disqualified from the adult research study.
Dave and I were invited to participate in an ongoing research project at a university located in the United States that focused on HFA and AS adults. For both of us, this would be our second time of trying out. Eleven years ago, when Dave was 19, he got accepted into the study and was flown to the city where the center is located to partake in various tests, interviews, and the coveted fMRI (all expenses covered). I initially applied a few years back, and because of a medication glitch, was disqualified early on in the candidacy process. Last Fall, I decided to try out again, and Dave decided to participate a second time.
Fast forward 10 months, a few in-depth phone interviews, mailed documents that contained proof of autism diagnosis (at 19 months, 4 years, and 7 years), signed contracts of consent, etc. … and I had reached the final step of candidacy qualification: a behavioral phone interview with my mother.
It was a result of the scoring on the interview with my mother that the university called to tell me I was disqualified. My mother had spoken to me earlier that week and shared her thoughts on the experience: “I was prepared to talk to them about your schooling, your early intervention programs, your struggles with speech and with peer interactions, but they asked me very specific questions,” my mother told me, “I was mainly asked to compare particular obsessions and behaviors you displayed as a 4-5 year old and compare it to you now as an adult. It was certainly not a typical parent interview.”
Having that prior knowledge, I let the gentleman on the phone know I appreciated the update, and kindly suggested in the future, if they were going to ask a parent to compare the behaviors of their child at 4-5 years to their behaviors as an adult, it would make more sense to direct some of those questions to the adult candidate. My mother and I live a few thousand miles apart. Of course she wouldn’t know what obsessions, rituals, and sensory issues I still go through as an adult. “The questions you asked my Mom were excellent ones,” I told the gentleman on the phone, “but I only see her twice a year, so of course what she’ll tell you might not be accurate to what I currently go through as an adult.”
Turns out the scoring wasn’t based on my behaviors as an adult… the scoring was based on my behaviors as a 4-5 year old.
Even at an age when I was repeating my second year of preschool and seeing a speech therapist 2 to 3 times a week, and had my fair share of behavioral meltdowns, that still did not qualify me to participate in the study, and, as the university determined, that my autism was “too mild”.
There went a fantastic opportunity to donate my time and insights to benefit an NIH Autism Center of Excellence’s efforts towards researching the needs of adults.
Dave was surprised when I told him the news. He was puzzled as to why, 11 years ago, he was admitted to the exact same study, and is well on his way to qualifying again. We both didn’t speak until the age of four. We both started out in a special education classroom setting. We both stimmed. We both had meltdowns. We both underwent similar behavioral interventions. What could have set us apart?
And then I began to wonder…. was this because I’m a girl?
There have been many cases where, not until the age of adolescence of adulthood, women have discovered they are on the autism spectrum. In most cases, if females are diagnosed early, it is due to displaying very profound indicators of autism. I was very lucky to have received a diagnosis when I did (19 months old to be exact), and I always assumed I was able to receive it because at the time, my autism was far more profound.
So what separated Dave from myself? Were his autism symptoms indeed more profound, or did he carry out his behaviors differently? Did I carry out my behaviors differently?