Families impacted by autism struggle with isolation, change during COVID-19 crisis

By: - June 3, 2020 12:02 pm

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Families all over Michigan have been at home with their kids for months during the COVID-19 pandemic. Life has been interrupted and looks a lot different now. 

The MiNavigator phone line for families impacted by autism is 877-463-2266 and is open 8 a.m. to 6 p.m. Monday through Thursday and 8 a.m. to 5 p.m. on Friday. 

And families with the added challenge of caring for a family member with autism are in a tight spot, as resources are limited and safety is more difficult to maintain.

Without school or therapy centers providing care and structure to individuals with autism during the COVID-19 pandemic, their lives lose valuable routine and support structures, said  Jill Matson, clinical specialist at the Autism Alliance of Michigan. 

Autism is a common disorder. It impacts 1 in 59 children in the United States to some degree, according to the Centers for Disease Control and Prevention.

Staff at the Bingham Farms-based organization instantly knew what shutdowns would mean for families with autism. The fear, isolation and uncertainty families would face during social isolation prompted the alliance to send out a statewide survey to families days after the announcement of Michigan’s stay-home order, Matson said. 

About 800 surveys came back.

https://www.michiganadvance.com/2020/04/02/whitmer-closes-schools-for-2019-20-districts-to-decide-learning-plans/

“They do have some concerns about explaining to their kids why they can’t go to school, why they can’t leave the house, why they’re not able to go therapy or why they have to wear a mask,” Matson said. “We’ve been providing a lot of support and education.”

Gov. Gretchen Whitmer on Monday lifted the stay-home order, providing some relief, but schools remain closed and other services are just starting to reopen.

All children, whether they’re on the autism spectrum or not, experience some regression when they’re not in school over the summer, Matson said. But kids who have been getting intensive therapies on a daily basis that are no longer accessible are particularly susceptible.

More than 20,000 students were eligible for Autism services in Michigan Schools for the 2017-18 school year, according to the Michigan Department for Education.

These families are dealing with the same financial troubles other Michiganders are. In addition, the loss of health insurance benefits that comes with unemployment sets families up to struggle to provide care, Matson said.

https://www.michiganadvance.com/blog/gov-signs-order-to-speed-up-jobless-benefits-process/

There can be challenges to caring for a family member with autism, especially children with severe behaviors, Matson said. The exhaustion that can come from caring for a family member isn’t enough for families to seek out help. Due to health concerns surrounding COVID-19, only 25% of those surveyed said they would allow respite services to come to their home.

“Some families were telling us that they did, in fact, have to go into a hospital with their child who was sick, whether it was from COVID-19 or another illness,” Matson said. “But what was happening is once they were there, they weren’t allowed to come and go. They had to stay the whole time, so then they had kids at home or other family members that weren’t being cared for.”

Oftentimes it’s really only the parents or close family members that can provide care for the individual with autism, Matson said. Parents expressed concern in the survey saying, “If something happens to me, who’s going to take care of my child if I’m sick or if I have to go to the hospital?”

It’s a lot to deal with and lots of families aren’t feeling supported, Matson said. Being locked at home is making people anxious and irritable. The main thing families really could benefit from right now is a plan.

Matson also is the manager of the MiNavigator program funded by grants and donations to provide free professional case management to families impacted by autism. Once a family contacts the program, it can keep that case manager for life, Matson said.

https://www.michiganadvance.com/blog/state-plans-to-reunite-foster-kids-with-parents-during-pandemic/

Telehealth options like the MiNavigator program have been crucial to supporting families through these difficult times, she said. The Autism Alliance is providing guidance to all kinds of health care providers to transition services online.

The organization used to hold bimonthly meetings with health care providers to talk about care, Matson said. During the pandemic they’ve been hosting meetings almost every week to talk about what the future looks like.

“We have seen some benefits, a silver lining come out of all of this,” Matson said. “I think a lot of these telehealth services will remain because for families who are living in remote areas of the state, where distance or location was a problem. … We’ve had a lot of people who have actually been able to access some services for the first time.”

Autism Alliance of Michigan photo

The struggles of families caring for someone with autism are unseen right now by many, due to isolation, Matson said. People can support those they know are facing this challenge by reaching out and calling the helpline. 

Matson said that others “just acknowledging that it’s hard and it’s difficult” for those with an autistic family member is important. 

“Sometimes that’s all families need or caregivers need,” she said. “t’s just to know that people know that it’s really hard for them.”

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Anna Liz Nichols
Anna Liz Nichols

Anna Liz Nichols is a former Michigan Advance intern. She is a Michigan State University graduate who has reported for several publications, including MLive and Michigan State University’s award-winning student paper, the State News, where she covered the many tendrils of the Larry Nassar sexual abuse scandal.

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