COVID-19 has inflicted a disproportionate burden on many groups, but one of the least recognized is that of people living with autism spectrum disorder (ASD). People living with an ASD are among those most likely to have a serious illness or die from COVID-19.
Dr Debra Pinals.
“It’s not that they’ll be more likely to have COVID-19 because of their disability, but there are factors [that can raise their risk]”says Dr. Debra Pinals, Michigan Department of Health and Human Services medical director for behavioral health and forensic programs.” They could be in a collective living setting. They might not understand the various mitigation measures we need to take, such as wearing a mask or washing our hands. And sometimes people with the autism spectrum, in particular, have more chronic illnesses – a lung disorder, a heart disorder, high blood pressure, or whatever. “
Additionally, adults and children living with ASD are more likely not to be vaccinated than those who are not. Scientifically unfounded fears that vaccines are linked to the onset of autism have increased vaccine reluctance among parents of children diagnosed with ASD, as well as adults living with it. Additionally, the physical act of getting the vaccine can be extremely difficult for children and adults living with ASD.
âIt really comes from the challenges people with autism face. With autism, you will have a person with communication problems, social challenges, and sensory challenges, âsays Colleen Allen, Ph.D., President and CEO of the Autism Alliance. of Michigan (AAoM). âWhat this means is that there is less ability to understand safety precautions and implement those precautions the way people without autism might. This puts them at higher risk. , mainly because they are exposed more often and cannot use these security measures. “
Colleen Allen.Pinals agrees.
âIt can be difficult for them to get out of their routines and go to the doctor or to a vaccination center. So a lot of work may need to be done to help them appease them and educate them on what they are going to do. And there may be concerns about the content of the vaccine, âsays Pinals. âSo there’s a lot of prep work that families or support systems may need to do to help encourage that person to get the vaccine or see a doctor if they have. [COVID] symptoms.”
For his child and his community
Joanna Lofton, AAoM Community Resource Specialist, has an adult son, Edward Lofton, with ASD. She was adamant that he received his COVID-19 vaccine as well as the booster.
Joanna Lofton.âI really wanted to make sure he was protected. I also wanted to make sure we were able to protect the other family members,â Joanna said. “Vaccination is really the only way to stop this virus. We have so many mutations because not enough people in the world are vaccinated. I just felt like it was part of my civic responsibility.”
The Lofton family haven’t stopped wearing masks since March 2020. Joanna Lofton says wearing a mask, washing hands and social distancing were all a fit for Edward, but he was able to adjust thanks to him. to persistent coaching. The support of his family also made it easier for him to make similar adjustments to the job where he works three days a week.
âThey have a lot of protocols on his job. And I knew he had to go to work, because he needed his routine,â says Joanna. “All too often, people with ASD end up slipping into depression – and their health problems worsen due to the isolation of being unable to get out among people. So that was another main reason for why. make sure he gets vaccinated. “
MiNavigators guide families with ASD to wellness
As COVID vaccines roll out for children, AAoM’s MiNavigator program has expanded its scope to include sharing scientific facts about the COVID-19 vaccine as well as information on how to prepare children and adults with the disease. from ASD to vaccination. A professional case management service for Michigan families affected by ASD, MiNavigator autism specialists work one-on-one with families to help them overcome the barriers they face when accessing care and support. of their relatives.
âSuccessful vaccination can be difficult for people with autism, especially children, given the unique behavioral, communication and sensory challenges of so many people with ASD,â Allen said. âAAoM is working with agencies and therapy centers across the state to establish immunization clinics that provide additional support that people with autism may need. “
MiNavigator’s first strategy is to prepare people with ASD for their vaccination. This may involve storytelling, role play, or a visit to the clinic where the vaccination will take place beforehand. They also help parents find immunization centers that understand the unique needs of people with ASD. Allen notes that each person with ASD has unique challenges that require unique accommodations.
âIt’s different from, say, a person with a visual or hearing impairment, where the adaptation will work for all people with that particular disability,â says Allen. “With autism, because it’s what we call an invisible disability, it won’t be clear to people as they interact with what the challenges are, whether it’s sensory overload or not enough input. sensory that causes the person to stop. It’s really the uniqueness of the behavioral challenges that can make getting a vaccine more difficult. “
The AAoM vaccination campaign gives providers information and training on how to create an environment that makes vaccination more comfortable for patients with ASD. Some examples include eliminating wait times, providing visual cues and sharing social stories, a social learning tool that supports the safe and meaningful exchange of information between parents, professionals and caregivers. people with ASD.
âIt could actually be a story of going to a doctor’s office and getting the shot, depending on the person’s ability. For those with significant cognitive issues, it could be pictures. ‘others, it’s actually a storyboard, âAllen says. “We know that unexpected and unforeseeable events are really difficult for a person with autism.”
Another part of preparing people with ASD for vaccination is explaining common side effects and letting them know that they can still get COVID after vaccination, although its impacts are likely to be much less severe. Although contracting COVID-19 is more deadly for people with ASD, the side effects of the vaccine are the same as for the general population.
“We let them know that [vaccine side effects] are normal, showing in part that your body is building protection, and that’s a good sign, actually, “says Pinals.” It’s part of educating them, talking about those side effects … and letting them know , also, that these side effects disappear within a few days. “
Because COVID-19 has taken its toll on Joanna Lofton’s extended family, she is particularly relieved that Edward is vaccinated. He can continue with the routine that helps him manage his ASD and is protected against the virus.
Joanna and Edward Lofton.âI think not only the Michiganders, but all of us, as a country, need to step up,â Joanna said. âWe need to get our people vaccinated as much as possible. We’re all scared and that’s understandable. But there’s also the fear of dying from COVID. And without vaccination, this virus will never go away.â¦ I think we have to. to one another. “
A freelance writer and writer Estelle Slootmaker is happiest writing about social justice, wellness and the arts. She is the development news editor for Fast growing medium and L’Arbre Amigos chairs, Wyoming City Tree Commission. His greatest achievement is his five incredible adult children. You can contact Estelle at [emailÂ protected] Where www.constellations.biz.
Photos of Joanna Lofton by Steve Koss. All other photos courtesy of the Subjects.