After two years of trying, dozens of hours of research and countless emails, I finally managed to get a neuropsychological evaluation (neuropsych). This process was the only way I could get diagnosed as autistic, which was necessary to receive all the accommodations I needed from Wellesley’s Accessibility and Disability Resources (ADR). The labyrinth I went through to get this diagnosis is unfortunately the norm rather than the exception. Of the dozens of treatment providers I contacted, all either had a waitlist of over a year or cost thousands of dollars out of pocket. This creates unacceptable inequities, where people are unable to access life-changing diagnoses because of the red tape involved.
I first started suspecting I was autistic at the beginning of my senior year of high school, but it wasn’t until I came to Wellesley that I realized I’d need to get a neuropsych to get a formal diagnosis. I was lucky enough to have a great therapist who managed to get me some accommodations with my mental health diagnoses, but I was worried that this wouldn’t be enough — both for my time at Wellesley and for any accommodations I needed in the workplace.
I quickly realized that there wasn’t a lot of support for someone in my position. ADR recommended that I contact a Harvard psychologist or a nearby clinic. The Harvard doctor never responded, and the clinic was so busy that their waitlist was full. Other students told me that the Stone Center might offer neuropsychs, but when I reached out to find a provider, they never responded to my email.
I was left researching psychologists and clinics that took my insurance, would evaluate me as an adult and had reasonable waitlists; all while trying to juggle classes, work and extracurriculars in my first semester of college. The lack of options was absurd. Out of 20 places in two states, I found exactly one that both took my insurance and only had a waitlist of about four months. A lot of people don’t have the time, energy or executive functioning skills to complete this process, not to mention those who are uninsured.
Even for those who do manage to get a diagnosis, inequities don’t end. Stereotypes about minority groups, as well as bias in research practices and socialization, means that there are both gender and racial disparities in who gets diagnosed. For autism specifically, white kids are diagnosed 19% more than Black kids, and 65% more than Hispanic kids. Boys are diagnosed about four times more than girls, and girls are often diagnosed later in life (even though a lot of autistic people are non-binary or trans, research about gender ratios in autism often assumes everyone is cis).
My use of the terms “girls,” “boys” and “kids” is very intentional. A lot of neuropsychs are meant to evaluate children, which means that if you fall through the cracks as a child, it’s a lot harder to get diagnosed as an adult. I was evaluated using the same diagnostic tools at age 19 as age 9, and I can’t describe how patronizing it is to have to read a picture book or explain to your examiner how one brushes their teeth.
There are so many more examples I could give about how this system is broken, but I think I’ve made my point. I’d also like to emphasize that I’m one of the lucky ones. My parents supported me in getting a diagnosis. I was able to get accomodations with my previous neuropsych. I had so many fellow Wellesley sibs suggest places to go, listen to me rant or celebrate with me when I finally got a diagnosis. I was also lucky enough to only have to go through this process once, when so many people need to try multiple places before getting a diagnosis.
This issue is complex and doesn’t have an easy solution. However, there are definitely things that Wellesley can do to help its students out in the current system. It would be great if Wellesley could use some of its $2.2 billion endowment to provide financial support and minimize the economic cost of this process. The Stone Center could clarify on its website if it provides neuropsychs or not, and either start providing them or offer referrals to other places. ADR can clarify what options there are available for people who are still awaiting an official diagnosis. And beyond Wellesley, we can work to remove barriers to both neuropsychs and healthcare in general.
