Sensory Friendly Clinics: A Kinder Healthcare Experience for Children with Autism and their Caregivers

Without noise, crowds or intense lights – and with the support of sensory toys, tools to reduce the pain of injections, and the help of specially trained personnel – the process is much more bearable for patients and their caregivers. Irene Arellano attests to this after participating in the vaccination day offered by the Autism Society of Texas with the support of the Vaccine Education Initiative.

By: Maria Isabel Capiello

Every time Irene Arellano takes her son Anthony to a doctor’s appointment, she prepares for the worst. Not only does she have to help him deal with the overwhelming sensory load of the usually crowded and noisy waiting rooms, but she also has to tolerate the lack of empathy from other patients and even nurses and doctors.

From a very young age, the 17-year-old, diagnosed with non-verbal Autism at the age of 2 in 2008, has shown resistance to any type of medical intervention; more so if it involves the administration of a vaccine or a blood test.  

“Every time we go to the clinic it is chaotic. As a child he would lie on the floor, cry or run in the office while people stared at us. There was so much pressure that I felt from the people and the doctors themselves that there came a point where we just avoided going,” says Arellano.

Now that Anthony is a teenager, Arellano has lost count of how many times they have resorted to extreme measures to vaccinate him: “They have had to hold him down with up to ten people because he won’t cooperate.”

But everything changed in 2022 when they went to the Autism Friendly Vaccination Clinic, organized by the Autism Society of Texas, to give him the COVID-19 vaccine.

“I thought it would be the same, but it turned out to be completely different. We saved ourselves all the stress, crying, anxiety and frustration, as well as all the stares. Anthony left there happy, without crying or anything. I could not believe it.”

That is precisely the goal of the Vaccine Education Initiative (VEI), a project of the Autism Society that seeks to address systemic barriers and promote education, confidence and access to vaccines in this population.  The idea is to rethink the vaccination experience to reduce stress and thus increase access for people with autism and other disabilities that are characterized by sensory, cognitive and social differences.

It is estimated that currently 1 in 36 children in the United States has Autism, a condition whose prevalence is increasing in the country. Like other individuals with special needs, they are at higher risk for vaccine-preventable diseases, but they also face significant health disparities that limit their access to vaccines.  Studies indicate that children with Autism are significantly less likely to be fully vaccinated than their peers.  Accessible vaccine clinics, like the one offered by the Autism Society of Texas with support from the Vaccine Education Initiative (VEI), seek to close that gap.

“The main thing is that we make adaptations to make vaccination easier for people with Autism” explains Adriana Crostley, Director of Education and Outreach for the Autism Society of Texas, which in 2022 offered special events in cities including San Antonio, Houston, Austin and Dallas. 

Small details make a big difference at Autism-friendly vaccine clinics.

The vaccination experience is made more enjoyable for people like Anthony and his family from the moment they walk through the door.  Appointment scheduling is set so that there are fewer people in the waiting room to avoid crowding and noise, and dimmed lights help those like Anthony who suffer from extreme light sensitivity.  Noise-canceling headphones are available, as well as a number of sensory toys (stress balls, infinity cubes, bubble poppers, and lap pads among others) that help relax and distract the patient during the process. They also have social narratives and other brochures that visually explain the step-by-step process of vaccination to reduce anxiety about the unknown, something that was very useful in Anthony’s case.

“In the past, no one ever explained to him what was going to happen. They thought that since he was non-verbal he wouldn’t understand, but he understands everything. Here they took the time to understand who he was and that made everything easier for them and for us,” says Arellano, who also appreciates that the nurses spoke Spanish.

In these clinics the waiting time is minimal – something that parents like her also appreciate: “The whole process did not last more than ten minutes.”

In addition to having friendly medical staff trained in working with individuals with Autism, they use available devices such as “Buzzy Bee” and Shot Blockers, designed specifically to control pain associated with venipuncture and superficial injections.  All of this allows patients like Anthony to receive the vaccine with less apprehension and resistance. 

“For the first time he didn’t get angry or anything. They let him calm down and they congratulated him,” says his mother.

Once the shot is given, a wide variety of bandage selections, toys, and other positive reinforcements help the individual remember the vaccination experience in a new light. The figures reflect the effectiveness of this formula. In the 35 clinics offered in 6 states as part of the Vaccine Education Initiative, they have managed to immunize 550 people, with a 99% successful vaccination rate. 

Among the vaccines administered are not only that for COVID-19, but also many others such as influenza. In total, they have trained more than a thousand medical professionals and established 60 alliances with regional, local and national organizations, as well as managed to distribute thousands of vaccine kits to medical providers and the community.

Now that we are in flu season, mothers like Arellano are confident that the initiative will continue expanding: “I’m waiting for them to open another day. These clinics offer what we parents want: for medical personnel to see our children not as just another statistic, but as a whole person.”

To access more information about this project and other useful resources for adapting the medical care for sensory sensitivity, visit the Autism Society of Texas website.