AAHR Patient Experience Board (PEB)
Autism has been a galvanizing force for many parents of autistic adults and self-advocates. We acknowledge and thank all of them for their time and efforts toward improving the lives of people with autism and those who love and care for them.
AAHR has benefited from, and is grateful for, the expertise and experience of 33 Patient Experience Board (PEB) members who devoted hundreds of hours to share the realities of navigating the health care system and advocating for quality care for autistic adults. Our PEB members include self-advocates, parents, and caregivers.
They experience a broad range of medical conditions and support needs. PEB members are diverse in terms of race, culture, gender identity, and socioeconomic status. They reside in urban, suburban, and rural communities throughout the US, with one member residing in Canada. Select members volunteered to share their stories and experiences for the benefit of this learner population.
Header image adapted from original artwork by Billy Megargel titled: Cross Sections (for more information see About Us)
Some thoughts shared with AAHR from PEB members:
I wish all physicians would presume competence with ASD patients and adjust accordingly (like educators who are certified to work with ASD students are trained to do). We might not understand everything, we may have some communication deficits and we might need things repeated or written down—which probably isn’t that radically different from other patients. But to be talked down to or talked over feels awful. I wasn’t diagnosed until late adulthood but I would have loved … a warm handoff between pediatric and adult care!
Whitney V., self-advocate
Advice to clinicians
"It's critical for medical professionals to understand that any change in long-standing behavioral presentations may represent a medical issue. The behavior may look like a behavior, but if it's new to this person (or something that has appeared in conjunction with medical issues in the past) that is an indicator to look for a medical issue."
Cathy B., parent
"I absolutely think that other medical issues/conditions are difficult to identify in ASD people. It is difficult to tell whether the issues are autistic traits or other underlying issues. My son cannot typically tell me what is wrong or if something is bothering him, so it is like dealing with an infant and trying to decipher clues as to what could be wrong. When it comes to other mental health issues, how do you know whether his behavioral issues are derived from his autism or if he is depressed, anxious or has some other underlying mental health issues going on. I am not sure what the answer is on how provider can overcome these challenges."
Stacy K., parent
My child has changed the mother I thought I would be into the one that I needed to be. And it wasn’t just me. They changed their father, grandparents, family friends, and well, everyone who came into our world. They showed us that we thought mattered didn't really, and then showed us what really did. They have stretched us past our insecurities and fears to a place painted with a technicolor brush where they are vividly alive, awake and aware. I know it hasn’t been an easy road these last 20 years. In many ways it will get harder still. But I have no doubt that they will continue to forge their own path, and that path, whatever it is, will be beautiful because it is their own.
– Betsy J., parent
It seems quite often that the picture of autistic people is painted as white, male, cisgender, heterosexual, and middle-class. This may stem from how that demographic is the most likely to be diagnosed with it, but that shows that others who have it are less often helped and understood to have autism.
Zian O., self-advocate