Issue 17’s Big Question
What is the most important thing for doctors to know about treating #ActuallyAutistic patients?
Our editorial team asked this question to the #ActuallyAutistic Community on Twitter and Facebook. Here’s a snapshot of what many of them had to say:
“Like any other patient, consent is key! Ask/tell the patient before turning on a light or equipment and before you touch their body or belongings. My least favorite thing doctors do is extend their hand to shake, because I feel obliged and it exhausted me. Use creative problem-solving to overcome sensory obstacles- “Yes, I need to turn on this bright light, but you can wear sunglasses,” or “I’ll make this part (with the bright light) quick and then we can turn the lights off to chat.”
Helen Rottier, @HelenRottier
“Ask about eating disorders! I’m white, an AFAB nonbinary person, and I hover around the low end of what is a healthy weight for me. I don’t happen to have an eating disorder, but I always disclose my autism to test whether doctors know that they should ask people who fit my profile. No doctor has expressed concern or offered help, not even when I was a student and so poor I was underweight. This issue is close to my heart because an autistic woman who was like an older sister to me died of eating disorder complications. I will miss her to the end of my days.”
Larkin Taylor-Parker, @ltaylorparker
“Everyone’s struggles are not the same. All of our experiences are different.”
Mark Tapia
“What kind of services do you already have? How do you think autism is affecting you? Are you taking any medications at the moment? If so, how are they affecting your daily life?”
Bill Wong
“We absolutely understand what you’re saying—the blank look is just us working a little harder to process everything being said.”
“Don’t dismiss our physical symptoms just because we have autism. Also, I just had my first mammogram. Every healthcare professional should be like Gretchen @DignityHealthSC Radiology. She walked me through every minute detail of the process without skipping a step. Made the experience very low-stress. #ActuallyAutistic”
Carly Fulgham
“Sensory processing differences, communication differences and comorbids. I’ve had strep throat many times, but my throat never hurt for it. I can burn myself and barely notice but a light touch hurts. Pain scales, listing types of pain can be very hard and not very useful. When it comes to communication, there are nonspeakers, one can have unreliable speech, if not questions like “how are you” can be confusing. Be patient and direct. Provide what the person needs. Many conditions are more common in autistic people, for example EDS is common.”
Cordelia Hacker
“To be super clear about what’s going on so I don’t overthink. To be patient if I’m freaking out when most patients wouldn’t. To listen to my words rather than read my facial expressions — if I’m telling you something is hurting, it is. And with nonverbal autistics, patience is key too. If it’s a child, listen to the parents if they’re telling you their child is in pain even if it’s unclear to doctors. We know our children even if they can’t communicate. I know when something is physically wrong with [my son]. One time, I knew he was in pain because of the way he walked. It took 3 doctors and 20+ x Rays of his lower body but they finally found the fracture (on his big toe). Keep an open mind and trust that sometimes, loved-ones of nonverbal autistics know best.”
Eileen Lamb
“To ask specific questions that cover everything and include ‘is there anything else you want to add?’ at the end. The amount of times Mum would say why didn’t you say X, and my response was, because they didn’t ask. I answer the exact question asked of me.”
Rosie Weldon
“Please be mindful that we may be able to tolerate hospital and medical settings less than more sensory-friendly settings, and that can affect our experience of pain.”
Vanessa Lierre Blue
“We do not need to be spoken to like children.”
Becca Lory Hector, @beccaloryCAS
“Just because my face doesn’t look like I’m in pain, I promise you I am. I’m not faking for pills, I’m just not expressive. Please do not downplay why I am here because I don’t match your face chart.”
Stephanie
“Let them disclose if they want to, but also don’t alter practices after they disclose to you. Knowing about a patient’s autism diagnosis should only alter how you treat them if explicit extra help is needed. Otherwise it just comes off as condescending.”
Jordan Schmidt
“Ask a lot of questions, because autistics do not volunteer information. Give them specific words, e.g. “Do you get headaches? Does your stomach ever hurt? Is it like a hard ball in your stomach, or is it fizzy?”
Harriet Koscho
“Dr’s need to know Autistic patients aren’t lying when they fidget & don’t make eye contact; they need to know autistic patients aren’t “catastrophizing”/making themselves sick when they research their own symptoms. Conversion Disorder criteria cause bias against Autistic people.”
Signe E. Land
“Executive dysfunction and the myriad of issues that makes phone tag hell for us are a MAJOR barrier to appropriate medical care, especially for those of us who don’t have someone to call for us. Your office NEEDS a schedule online option.”
Joseph
“Many medical professionals have shamed or chastised me for not “taking better care of myself” when the root cause of that was some combo of stuff like executive dysfunction, depression, sensory issues, etc. All their shame did was make me more resistant to getting care.”
Joseph
“To visually show me whatever is about to happen. If I can’t see it, I can’t mentally prepare myself enough and therefore panic.”
Alice
“The most important requirement is that the doctor has an understanding of what autism is and how an autistic communicates when in pain/crisis/need! A failure to understand could adversely affect a doctor’s ability to effectively treat/diagnose.”
Breige
GO BACK TO ISSUE 17
Read more articles on “How Self-Advocates are Changing Health Care” in Zoom Autism Magazine, Issue 17:
Cover Story
Feeling Comfortable and Understood by My Medical Community by Chloe Rothschild
Includes Chloe’s Tips for Self-Advocacy in Health Care
Feature Stories
- Why I Became Passionate About Autistic Advocacy in Health Care by Lydia Wayman
A Letter from our Guest Editor - A Physician/Mom’s Tips on Making the Most of Your Office Visit by Ann Oldendorf, MD
- Health Care Self-Care on the Spectrum by Delaine Swearman
- How Serious are Health Care Issues in the Autistic Community? by Campbell Teague
Our Columnists
- Cummings and Goings: Hope and a Fighting Determination! by Conner Cummings
- Showing My Body the Grace It Deserves by Gretchen McIntire
- THE VIEW FROM HERE: A Glimmer of Hope for Those Who Struggle by Daniel Derrico
- How We Manage the Fear and Anxiety of Doctor Visits by Megan Amodeo
Discover more Zoom Issues:
- Issue 13: Family
- Issue 14: Trailblazers
- Issue 15: Powerful Women
- Issue 16: Traveling the Spectrum Way!
- Archived issues on the Zoom Home Page
More autistic-written articles and author interviews on our blog
What does Zoom have to do with Geek Club Books nonprofit mission?
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