Research data published by the
National Library of Medicine found that 80% of adults with Autism Spectrum Disorder (ASD) reported difficulty visiting a general practitioner. Barriers included deciding if symptoms warrant a visit, difficulty making appointments by phone, and communicating with doctors,
and more. In addition, autistic patients are also more likely to experience chronic health conditions.
Because equal and quality access to care is so important, making sure medical practices improve access and accommodations for people with autism is a crucial goal of the
Autism Alliance of Michigan (AAoM).
Why are accommodations important?
A care provider’s waiting room can present challenges due to hypersensitivity, an intense reaction when sensory information overwhelms autistic persons, and hyposensitivity, under responsiveness to stimuli that lead to stimulation-seeking behaviors.
Imagine two people having a conversation at a park in town. One is an autistic person, and the other is not autistic. The person who is not autistic would likely have no difficulty hearing and focusing on the person they are speaking with. While the autistic person may hear the words the other person is speaking, all of the noises surrounding the two may have the same level of input — cars driving by, other conversations, a gardener using a weed whacker, footsteps of people walking, water flowing in a fountain, and other sources of noise all have the same volume level. The abundance of auditory stimuli makes it extremely difficult for the autistic person to focus on the conversation.
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Belinda Lee, Belinda Lee, AAoM outreach and engagement specialist.
“The analogy is you can't see the forest for the trees,” says AAoM health and wellness lead Belinda Lee. “It's losing things because there's so much information there and not being able to filter out what's important to focus on in that conversation with the person across the table. Everything's coming in at the same volume.”
The
elements of a doctor’s waiting room that can create problems with hypersensitivity include fluorescent lights, sounds of other patients, background music or a TV, and other distractions.
In other cases, an autistic child may exhibit certain behaviors while at a medical office because they are experiencing anxiety. Lee says a child may start fidgeting or rocking because of not being able to sit still. This movement is an effort by the child to create sensory inputs to focus on what they can control, a response to hyposensitivity. Essentially, the child is trying to compensate for a lack of accommodations by creating the accommodations for themself.
Although fidgeting and rocking can create a sense of control, Lee says it can impact care when, for example, a nurse is trying to administer a shot. The nurse will want the patient to be still, which ends the behavior that is helping the child to remain calm.
“Some providers will not provide services for those with ASD or disabilities, and that puts people at risk in terms of their own personal health,” Lee says. “It shortens lifespans. Ultimately, quality of life quality is reduced."
However, when providers create accommodations and patients, or their parents or caregivers, prepare in advance, risks for a negative health care experience are mitigated.
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Knowing what accommodations work best for the specific patient is critical.
Be proactive, not reactive
Before visiting a provider, calling and asking about accommodations can help create a successful visit. Knowing what accommodations work best for the specific patient is critical.
Dr. Anna Groebe, a practitioner who works hard to make accommodations for autistic children in her practice at
Bloom Pediatrics in Birmingham, Michigan says it is better to be proactive than reactive — patients or caregivers can call in advance to alert the provider about what causes hypersensitivity and other difficulties. Not only does this help the patient, it also helps doctors and nurses prepare for the patient’s visit.
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Dr. Anna Groebe.
“Ideally, that communication gets to the right people and the experience is much smoother for everyone,” Groebe says. “We welcome those phone calls in advance.”
Doctors may be able to schedule patients with ASD for the first appointment of the day. This time is often quieter than later in the day, potentially limiting the amount of stimuli in the waiting room and a faster visit due to fewer people scheduled ahead of them.
“In our office, we’ve tried very hard to accommodate any family in any way we could,” Groebe says. “This includes being open early before general patient hours. We are known to play music during our flu clinics and give out balloons, both of which can be over-stimulating to kiddos that are sensitive and overstimulated easily. We had a few parents say, ‘When can we come where you won't play music?’ We made a big effort to say, ‘We’ll do anything you need.’”
Groebe says being flexible and meeting patients where they are is an important accommodation. Groebe’s practice offers vaccines in the parking lot so kids can stay in their parent’s car. Other times, patients are brought in through a side door. The practice also offers services at alternate locations like schools and community centers.
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When a nurse is trying to administer a vaccination, the patient needs to be calm and still.
Making it personal
Groebe’s office also tells parents what times of the day are typically the quietest. Patient and parent feedback is written down in the patients’ charts so staff know which nurse they like, what kind of environment is best, and other ways personalized accommodations can be made.
Essentially, accommodations should be flexible so that each patient is as comfortable as possible.
“We are sometimes able to get information in advance from the families,” Groebe says. “We had one kid who liked Burger King. We made sure the minute he walked in, we talked about Burger King. He was excited about his reward.”
Knowing what the family uses to reward their child and make them feel safe also helps tremendously, according to Groebe. If information is not offered in advance, Groebe mentions that paying attention to each patient, listening, and looking for more subtle indications of how a visit is going can help.
It is also crucial that autistic patients and parents of autistic children find a health care environment that will work for their needs. According to Groebe, without knowledge of where to receive care, parents of children with ASD may take their child to a pharmacy for a vaccine because the child is familiar with the store. Groebe recommends that patients with ASD avoid pharmacies for vaccines because some pharmacists or pharmacy staff administering them may not be trained to give vaccines to all populations like children in general, let alone those with autism who may benefit from extra accommodations.
AAoM’s directory of various autism-informed service providers across the state is a free tool that parents of autistic patients and patients with ASD can use to find d health care providers who will create accommodations for their patients.
To learn more about the Autism Alliance of Michigan, click here.
Joseph Goral graduated from Oakland University in the summer of 2023 with a Bachelor of Arts in Journalism and a Bachelor of Arts in Communication. Before his graduation, Joseph was a digital news intern at ClickOnDetroit and a contributing writer for The Oakland Post. When Joseph is not writing, you can usually find him watching Pistons basketball, playing with his dog Biggie, doing personal photography, and spending time with friends and family.
Photos of Belinda Lee and Dr. Anna Groebe courtesy AAoM.
Other photos in order of appearance by Shevtsa, Yan Krukov, Norma Mortenson, and N. Voitkevich via Pexels.com.
Autism Alliance of Michigan (AAoM) was founded with the vision that people with autism will lead lives that meet their greatest potential. AAoM leads efforts to raise expectations and expand opportunities for people touched by autism across the lifespan.