Individuals with Autism at Home during Lockdown

For most people this coronavirus crisis is a very worrying, stressful and unclear time that we don’t know when it’s going to end, but the problems and challenges this crisis creates for the individuals with autism are more severe.

“Because the coronavirus has taken away those daily routines and you can’t go to the places you used to go everydaymany individuals with autism are facing emotional distress and anxiety of unexpected events which makes it harder for them to do their daily tasks or could be even dealing with self-injury or aggression if they get overwhelmed with all the stress”, says Zoe Gross, director of operations at Autistic Self Advocacy Network (ASAN), a nonprofit advocacy organization run by and for autistic individuals. 

“People with autism don't often have the best support networks to start with so it's really hard for them to get support in a crisis like this,” says Jane Harris, Director of External Affairs at the National Autistic Society.

Some people with autism find themselves sheltering with people who might not have the knowledge about their needs and might provide insufficient support. They could also be deeply isolated during this crisis and are not receiving the care they need and here are some examples:

Simon is 53 years old and has autism. He has very limited communication but he’s a very active man who would go riding and swimming once a week. “Simon felt ill and I just felt sick with worry, what's going to happen to him if he is so ill, he has to go into hospital?" says Simon’s mom Andrea to BBC News.

Simon wasn’t even tested for coronavirus, even though he was having all the typical symptoms, and his mother Andrea wasn’t permitted to see him. Simon doesn’t communicate so they didn’t know if he was feeling better or worse. "No doctors will come, and we don't know what we are dealing with, the hospitals have very limited staff who know how to deal with autism and learning disabilities individuals” says Simon’s mom to BBC News.

The National Health Service (NHS) guidelines states that if someone with autism or any learning disability needs hospital treatment for Covid-19 then a single family member is able to visit. 

David was diagnosed with autism and multiple learning disabilities as a kid and now he is in his 50s and living in a residential care homes. He is very worried about what will happen if the virus spreads and gets him. He doesn’t feel protected because of the lack of personal protective equipment (PPE) for all the care providers. "They should test the residents and care workers daily," says David to  BBC News.

Another example of this situation is Cristopher. "He gets very confused, frustrated, anxious when there is a change to his daily routines," says his mother Jane to  BBC News. He lives alone in his own house and he use to have two caregivers who will help him do the tasks he couldn’t do alone, but because of the COVID-19 they had to resign and left him without any support at all.

There are a lot of individuals with autism that find hard to handle the unpredictable, and since the coronavirus outbreak some individuals have been self-isolating and have limited contact with other people to just having brief phone calls or a knock at the door, which can make them lose all their social skills again. 

Like most parents, Megan Hufton has been staying at home with her two young sons because of the coronavirus outbreak. Both of her sons are autistic and nonverbal and for her being a single mom with two sons it’s already challenging enough, but the life changes that the COVID-19 brought into her life were very unpredicted. “It’s been a unique challenge, especially for my younger son, who is 8. He’s used to having a routine, he loves school, he loves therapy. My older son does, too, but he’s more ‘go with the flow,'” Hufton told Healthline.

“Because of the developmental levels of an individual with autism, it’s very difficult for them to understand why a routine has been disrupted, for how long and for how long. It can add stress,” says Donna Murray, PhD, CCC-SLP, vice president of clinical programs and head of the Autism Treatment Network (ATN) at Autism Speaks, and Adjunct Associate Professor of Clinical Pediatrics at Cincinnati Children’s Hospital told Healthline.

Some of the things that people can do to start getting used to the ‘new normal’ is to make a new schedule and routine that fits their lifestyle during this lockdown, like writing schedules, lists of daily activities or visual schedules might be helpful. 

Also, support groups, online video chatting, or local organizations to help individuals with autism are all the sources needed to help build a community peer support during this confusing, stressful time for many people.

This is a very stressful time for everyone right know but remember to stay positive, that this is all new for everyone right now and that we are all still learning and trying to figure out how to deal with it together. 

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