“If you have young children and you’re following that typical routine vaccine schedule, in many cases, the early signs of autism may be present, as well,” says Jaime Zavier, AAoM outreach manager. “Between the ages of one to three, a trained professional would detect early developmental delays and/or autism regardless. These visits serve multiple purposes beyond vaccination. The earliest diagnosis of delay or autism should ultimately lead to the earliest interventions.”Zavier notes that these timing similarities contribute to the myth of vaccines causing autism despite evidence showing no link exists between the two.
“It’s really unfortunate because, for communicable diseases, vaccines are so critical,” says Sharon Milberger, director of the Michigan Developmental Disabilities Institute. “I understand how parents could draw conclusions, but the research does not support that.”
While awareness of misinformation is important, AAoM makes both accurate information and resources available to help people living with autism get the best care possible — as a group, they report lower-quality health care on average.
During the COVID-19 pandemic, vaccination was especially important for people living with autism. Not only were autistic adults infected and hospitalized at higher rates, but social distancing and stay-at-home orders limited access to services and made communication more difficult for a community that already faces communication challenges.
For those living with autism spectrum disorder (ASD), doctor visits can present a range of challenges that make receiving care difficult. These challenges, combined with misinformation surrounding vaccines, autism, and COVID-19, can make it difficult for people living with autism and their caregivers to get needed health care.
Before the visit
Vaccination is important for everyone. Getting screened early for autism can help parents and caregivers prepare for any special accommodations that may be needed. Regardless of the reason for the visit, health care visits may be especially challenging for this population.
Children and adults living with autism can experience great anxiety when their daily routines are disrupted. Zavier and Milberger say preparation can help.
Before making an appointment, Zavier advises parents or guardians to call the doctor’s office to ask about accommodations for patients living with autism. Doctors may be able to schedule these patients for the first appointment of the day — a quieter time when not as many people are in the waiting room and it’s faster to get in and out.
Milberger says, “I would talk to the provider and ask them, ‘What can we expect? What can we do on our end to make it a successful visit?’”
AAoM also offers a free directory of autism-informed providers. After creating a free online account, parents, caregivers, or adults living with autism can browse offices where physicians and staff have been trained in treating and accommodating patients living with ASD.
While it may not be possible everywhere, Milberger says visiting the site before the appointment can help prepare patients living with autism. Seeing the equipment and asking questions can “go a long way for just health care in general, so that it’s not as scary.”
“I would talk to the provider and ask them, ‘What can we expect? What can we do on our end to make it a successful visit?’” Sharon Milberger.
The waiting room
When the day of the appointment arrives, the waiting room can also feel overwhelming and present challenges. According to the National Library of Medicine, two detriments to the waiting room experience are long wait times and a lack of developmentally-appropriate toys for children living with autism.
This combination can negatively impact patients with ASD due to them experiencing hypersensitivity and hyposensitivity. Hypersensitivity occurs when a person overly reacts to sensory information compared to others. This situation can quickly or gradually overwhelm a patient’s brain when they are exposed to too many stimuli in their environment. Hyposensitivity, or under responsiveness to stimuli in an environment, leads to stimulation-seeking behaviors.
Erik Gallery, AAoM director of Statewide Access and Early Identification Initiatives.
Covering one’s ears when a noise is too loud or engaging in constant movement can be signs that someone living with autism is experiencing hypersensitivity or hyposensitivity.
“Many medical providers don’t always have control over the physical environments that they’re providing their services in,” says Erik Gallery, AAoM director of statewide access and early identification initiatives. “They don’t take notice of how glaring the fluorescent lighting can be because they’re used to it. Same thing with the level of noise in those environments and some of the imagery that might be around.”
However, each person experiences ASD differently. Some may not necessarily experience sensory aversion.
Patients also can advocate for themselves by asking for accommodations before appointments. Telling doctors about past challenges can help patients and caregivers learn about available accommodations. Knowing more about the upcoming visit can help ease some of the discomfort.
For patients with varying sensory aversion, doctor’s offices can provide sensory items like weighted blankets, fidget toys, or noise canceling headphones to make the appointment more comfortable. If the doctor’s office doesn’t provide these items, it can help to bring these and other sensory items like books and videos from home. Changes to the physical environment such as keeping rooms quiet, dimming lights, and other interventions like massages and space for physical movement can also be helpful.
“There’s research showing that there’s a view that people with disabilities have a lower-quality of life,” Milberger says. “So, you can imagine the kind of care that would be given or not given.”
This expectation is another reason why preparation for health care appointments is also important. Zavier advises people living with autism to write questions down beforehand as environments with a lot of sensory stimulation, like doctors’ offices, may lead to forgetfulness.
As everyone living with autism interprets stimuli differently, some affected by touch may find the sensations from treatment cause additional challenges. Again, asking for or bringing sensory items like fidget toys can help people living with autism to focus during treatment.
Gallery notes that effective communication is also crucial, whether it is from caregivers or professionals.
“Being intentional and doctors talking through what they’re doing with the patient is also important,” Gallery says. “Not just doing the steps, but actually communicating what’s happening to give a little bit of pre-awareness as to what a procedure is going to look like.”
Social stories, a social learning tool that supports the safe and meaningful exchange of information between parents, professionals, and people with ASD, can help caregivers explain to patients living with autism what to expect in certain situations. While they can help anyone with anxiety surrounding the unknown, Gallery says they can be especially helpful for those living with autism. In health care settings, a social story may walk a child through the process of getting a shot.
“When I talk with parents and caregivers, I try to reinforce the importance of being vocal about their child’s needs,” Gallery says. “Whether it is developmental delays, a child not having a diagnosis, a child having a diagnosis, or just coming for their routine care, being vocal about their needs helps ensure that those living with autism get the best care possible.”