April 14, 2022

It’s that time of the year again. Taxes are due, light it up blue, it’s Autism Acceptance Month. Most Aprils – with some exceptions like in April 2020 when the pandemic shut down life as we knew -- online search interest in autism shoots up as evidenced on Google Trends. It’s clear that whether the month is termed autism ‘awareness’ or ‘acceptance’, more people are laying eyes on autism-related content in April. But it’s not clear what benefit, if any, result from this increased visibility. After all, there is a large gap between seeing information and believing it. In this era of misinformation, where more than 40% of Americans do not believe President Biden won the election and over 80% of Russians support the invasion of Ukraine, being aware of information does not necessarily have any connection with reality.

I understand and support the sentiment underlying the name change from ‘awareness’ to ‘acceptance’, but for me, as an autism epidemiologist, the naming of a particular month does not particularly concern me. There’s not one specific month that I am more ‘aware’ or more ‘accepting’ of autism – it’s business as usual, every working day. I am fortunate to be part of a passionate, dedicated team of scientists at the A.J. Drexel Autism Institute with whom I analyze autism-related data. In particular, one major theme of our ongoing work in the Life Course Outcomes and Modifiable Risk Factors groups is to document the unique health challenges that autistic persons face. Challenges including: the increased risk of early dementia in autistic persons (published last year); and forthcoming results including concerning levels of psychotropic medication usage in autistic youth, and high amounts of cardiometabolic disease burden in autistic youth. We work to publish these data in scientifically rigorous, peer-reviewed journals which is of course a necessary outcome, from a scientific perspective. But unfortunately, scientific publication is just one small step in the process. From there, a lot more work with communication has to be done. If a tree falls in the forest and no one is around to hear it, does it make a sound? If autistic persons, caregivers, and health providers aren’t aware of these health challenges, how can optimal outcomes be achieved?

This is where experts in communication can help – the Outreach Core at the Institute is effective at information dissemination to stakeholders, while the Drexel University Media Relations Office helps to engage with the lay public. For ‘straight from the horse’s mouth’ engagement, I’m slowly starting to learn the ropes of the Twitter-verse and send out occasional tweets into the ether. Please give me a virtual hello at https://twitter.com/brianklee_epi!

All of this is a long-winded way of coming back to the topic of awareness and acceptance as related to autism. For me as a scientist, I believe that ‘awareness’ is an incredibly important component to our work. We can’t keep our work locked up in the ivory towers of academia, behind journal paywalls that charge an arm and a leg to access. Quick tip for folks out there: if you’re being blocked by a paywall while attempting to read a scientific paper, always email the corresponding author – we’re more than happy to share with you! In this era of misinformation, where a lie can travel around the world before the truth has a chance to put on its pants, scientists have a responsibility to not only do science, but to do their best to help ensure that the persons who need to be aware of the science are made aware of it. Thus, while April is no more special of a month to me than any other month (at least related to autism), for me it is a reminder of the importance of awareness in helping to translate data into action.

Brian Lee, PhD is an Associate Professor of Epidemiology and Biostatistics at the Dornsife School of Public Health.