In the midst of this pandemic, the autism community faces higher risk for contracting COVID-19, not receiving enough aid, and difficulty reintegrating into society.
Maia Pawooskar is a part of the Regional Advisory Committee at State Council on Developmental Disabilities, Consumer Advisory Committee at Developmental Disabilities (UCEDD), a Group Leader at Autism Society Inland Empire, and is on the Self-Determination Advisory Committee Chair at State Council on Developmental Disabilities/IRC.
Q: How do you think the reintegration into society will be for those with autism?
A: It is a tremendous […] difficulty but if we plan, knowing that this is going to happen and we have more socialization, smaller areas, more direction, and a mediator, then we can address those issues and help them come back, so reducing the time depends on how we plan it.
Q: How has the change from in-person therapy and schooling to online therapy and schooling affected those with autism?
A: For a large majority, it has not been good for two reasons: one is the lack of attention span. […] The teaching community for online [learning has] training on how to give one-on-one in-person training [not online teaching]. Because of that, the lessons [are] even hard for individuals without disabilities. Those individuals with autism get distracted more easily or they micro focus. They might be focusing on their reflection rather than the teacher and then the sound sometimes comes choppy and that cuts away the conversation. They need more processing time. And number two is lack of one on one. When two people are together, you are in their space, so you have the sensory element. Many of them [have] very heightened sense of sensory so even the smell of another person, the breathing sound of another person, can bog them down. We try to train them by putting them in these situations slowly [but] it’s impossible to do online.
Q: How has Covid-19 been addressed in the autism community and was the health care system prepared for those with special needs?
A: Many autistic children also have comorbidity and some of them have special health care needs [which] make them more susceptible to [Covid-19]. We were not prepared; I serve on the committee for State Council and I actually raised the issue to them because I was hearing from many people of the disabled community that must depend upon somebody else to provide them some assistance.
What was happening is their providers were not showing up and there was no alternative. Then it was recommended in State Counseling that the In-Home Supportive Service maintain a registry of alternative providers. [This way] if somebody doesn’t show up for two days or something, then the recipient can call [because] you cannot have a person just sitting in a chair without any assistance for more than two days, that’s dangerous. They would be able to put in a call and then they would be able to reach out to this database to send somebody to provide some assistance until the person is able to come back or until they are able to provide them a regular provider. It was very scary initially because it took more than a month to be implemented.
Hospitals were not allowing anybody in with the patient, there is no way you can have a child with autism or an adult with autism go to a hospital without their parent. What was happening was either they were not getting care because they couldn’t go or when they went, they were taken in and not treated properly because many individuals, even if they are verbal, cannot describe, or they get nervous and anxiety prevents them [from talking]. Now there is a directive, or an order passed [stating] that an individual with a disability who requires a personal care attendant whether that’s a family member or whoever must be allowed to come in.
Q: What can be done if this pandemic persists or if we were ever to experience something like this again?
A: We have to make sure school programs have documented all of this. Local libraries are documenting these experiences [and] City Council is aware. And when we open up, we have to make our children visible. They were not visible before which is why we’re here. We have to make them visible, so should this ever happen again we are prepared. But also, the community at large knows they already were at a disadvantage and they survived through this, so we need to be more understanding, and everybody can help each other.