DEI Special Edition Spring / Summer 2024
hallway because patients refused to enter a room. What ’ s more – the familiar voice, a communication by relationships, that special picture hanging at a slight tilt in the hallway, even specialized sign language for our nonverbal community is absolutely critical to delivering care. Now imagine a world … where after years of trust - building with a healthcare pro- vider, you approach an autistic patient and ask them to leave that same environ- ment for a clinical trial. The resounding answer will be, “ No – I can ’ t leave my doctor. ”
We would not ask a blind person to personally drive to a site and we wouldn ’ t ask a deaf individual to participate in a trial solely with an audio - only phone. Why would we ask autistic patients to participate in clinical trials solely by abandoning the structure
and routine they have developed to survive?
The answer – we won ’ t. It would completely derail years of lifestyle manage- ment and potentially cause meltdowns for the same patients we are working to help. Thus, autistic patients do not participate in clinical trials out of choice, but out of the necessity to survive away from a well - known and unfavorable out- come. Patients are NOT their Diagnoses The first thing that comes out of a colleague ’ s mouth when I tell them I ’ ve start- ed an autism - friendly clinical trial site: “ Oh I know a few Autism clinical trials that you might be interested in. ”
And the second thing that comes out of my mouth: “ Just because I run an autism - friendly clinical trial doesn ’ t mean I specialize in autism clinical trials. ”
There is far more complexity to autistic patients than their ASD diagnosis. They suffer from and are fully qualified for trials that focus on seizures, anxiety, de- pression, diabetes, metabolic disorders, and so many more. How may we include Autistic patients comfortably in clinical trials? To welcome autistic patients into our trial portfolios, we must look beyond ASD, see them as comprehensive patients and individuals, and understand how we as clinical research professionals can accommodate their needs.
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