By Chloe Rothschild
My involvement with health care professionals increased in August 2015.
I was hurting and exhibiting behaviors as a result of pain in my bladder. All I could communicate was “tummy hurt,” because I did not recognize the difference between stomach and bladder pain.
My parents took me to numerous doctors. I went through multiple tests; each time we heard the words “normal” and “negative.” Yet my pain persisted.
In October 2015, I was seeing a specialist at Michigan Medicine. She mentioned a chronic bladder condition called interstitial cystitis and referred me to a urologist.
I was eager to see a urologist, as I was eager to see anyone who could possibly help me find answers, and most importantly help make the pain manageable. But I also felt a little nervous to see yet another doctor because I was worried that the doctor would not understand.
The opposite happened when I walked in on a later October day to meet with the urologist, Dr. Ann. I let her know about my autism ahead of time. (This was a self-advocacy win in my book.) It also helped that Dr. Ann is also the mom to an adult with autism.
When Dr. Ann came into the room, she did not judge me or my caregiver.
She saw the pain I was in and took it seriously. At no time during the appointment did she question the fact that something was causing the pain. She never made comments such as, “you do not look like you are in pain,” “other patients I see with stomach aches have anxiety,” or “it’s likely anxiety.”
I was diagnosed with interstitial cystitis. We first tried medication. When medication alone wasn’t working, I had a procedure where the bladder gets stretched (hydrodistention) and a cystoscopy done under anesthesia. The pediatric urologist who did the procedure was able to confirm to Dr. Ann that I had IC.
When I still had some pain in January, we decided to take another treatment approach with Dr. Ann’s encouragement and guidance: bladder installations. I go to the clinic for these installation appointments. At one point I went once a week, and there was one month I went twice a week. For the past year or so, I have been going once every three weeks or so.
Dr. Ann was there for my family and I every step of the way.
I am forever grateful that the receptionists, nurses, and Dr. Ann believed in me and never gave up. When one method to help stabilize my pain did not work, another was tried. Even when I thought it was not possible or would be too hard, Dr. Ann and her team proved me wrong.
I mentioned to Dr. Ann that I wanted to see a program and supports for adults with ASD at Michigan Medicine. Michigan Medicine already had some experience creating sensory kits for different hospital departments. The goal was to expand this initiative even more. We worked with others at Michigan Medicine to create the Autism Initiative and created an educational video. I’m on a mission and I have big goals.
I wish there were more doctors like Dr. Ann!
I am hopeful that I just haven’t met them! Many people, including those with ASD, struggle with interoception. Interoception is the eighth sensory sense which helps you feel your body and emotions. I am passionate about this topic, Kelly Mahler, Jarvis Alma and I are co-authors of My Interoception Workbook: a Guide for Adolescents, Teens and Adults. This can impact the ability to feel pain. I like to say that communicating what hurts can be harder for me that sometimes we may have to look deeper into it. It can be like detective work at times! Patients should not be afraid to explain this to doctors and to ask questions.
I’m always hopeful that health care for individuals with autism will continue to get better and that services and acceptance will become more and more available globally and across the lifespan. I have big ideas, and I hope that Michigan Medicine’s Autism Initiative can continue to grow and expand. Thanks to the efforts at Michigan Medicine, I now feel comfortable, understood, and cared about when I go to the clinic for appointments.
This journey continues to show me that with a team and support anything is possible.
Chloe’s Tips for Self-Advocacy in Health Care
Throughout my medical journey, I have learned several helpful tips and strategies with the help of my family, doctors, and others that I want to share with you. It is my hope that these tips can help make medical appointments easier:
- Take a trusted caretaker or friend with you to the appointment to help you advocate. That person can also remind you what the doctor said after the appointment.
- Take sensory tools such as noise cancelling headphones, your weighted blanket, sensory fidgets, communication devices or tools, and comfort items such as a stuffed animal to the appointment. My stuffed tiger named Sunshine has been to many appointments. Appointments can involve lots of waiting, bright lights, tactile input, and unexpected, loud or different noises.
- Bring items that can help distract you while you wait for the appointment. Some examples are games or videos on the iPad, coloring, playing with sensory fidgets, etc. You might get to an appointment early, or the doctor might be running late. That’s OK.
- Write out a list of your questions and concerns or program them onto your communication device ahead of time. Bring the list with you so that you know what you’d like to cover or talk about at your appointment. Sometimes it can be hard to remember everything! Also, bring a list of your symptoms and medications that you are taking with you to the appointment.
- Consider disclosing your autism to the doctor, and advocating for any supports and accommodations you might need. You might need more time for the doctor to see you or an appointment first thing in the morning to minimize wait times, or so your support person can come with you. Sometimes it may take longer to get thoughts and words out or process information, which makes a later appointment helpful. Waiting can be hard, so this can make an earlier appointment helpful.
- I always make sure to tell the receptionist scheduling the appointment to please make a note that I have autism so the doctor knows ahead of time. Also, do not be afraid to ask if there is a doctor in the practice who has experience working with autism. I’ve even written an email or two to a doctor ahead of time to let them know my needs. This has also provided me with some comfort and helped ease some anxiety.
- Communicate and show your symptoms in a way that works best for you. I’ve drawn/written a cartoon comic before about how I got hurt once. I’ve also marked and labeled on a blank coloring page outline print out of what/where something hurts.
- Use language that makes sense to you or have a caregiver help explain to others.
- Plan something for yourself to look forward to as a reward or special treat to look forward to after an appointment if you think that this may be helpful.
- Contact the Child Life Department at your hospital if they have one. Child life specialists help make the hospital easier for children. I have called or emailed and explained my situation before. I’ve been lucky that they’ve been super helpful. You can ask what supports they can offer you. They have helped me with different things such as access to a social story PowerPoint, links to resources, providing a mini DVD player for me to watch a movie or TV show on, stopping by and checking in on the day of a procedure, providing a distraction such as a coloring book during a stressful time when I wasn’t feeling well and was at the ER, and more. You do not know what help is out there until you ask.
- Have a trusted person help you create a visual schedule and/or social story for a procedure, test or appointment ahead of time. You will feel more prepared once you know what to expect.
- Sometimes a provider may not end up working out for whatever reason. It’s okay to find a different one. You do not need to go see a medical professional who you do not feel can meet your needs or who you feel like you are walking on eggshells around.
- Some medical providers also have a portal messaging system or a way for you to contact them online in a secure way before you see them next. This can be a way for you to ask questions. It can be especially helpful if you feel like you always think of more questions after the appointment! I use this feature often and am so grateful for it.
- Last but not least, trust your gut! Advocate for your needs. Explain your sensory differences and communication needs. Without these explanations, it is likely to be harder for medical professionals to best serve you.
Chloe Rothschild is a young adult with autism who is an advocate, presenter and author. She serves on the OCALI (Ohio Center for Autism and Low Incidence) board and is on the board of directors for the Arc of the United States. Chloe is a coauthor of the My Interoception Workbook: A Guide for Adolescents, Teens, and Adults. Chloe is a teacher’s aide at an autism school 3 days a week.
Read more articles on “How Self-Advocates are Changing Health Care” in Zoom Autism Magazine, Issue 17:
- 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
- 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