NEW JERSEY – While conditions are gradually changing to allow more in person contact during the ongoing COVID-19 pandemic quarantine, autistic children and their parents are are continuing to face new challenges.
Not only are families suffering from reduced income, closed schools, and closed day programs, but individualized educational and vocational supports sometimes cannot be delivered remotely or are more limited in hours per week or scope.
Donna S. Murray, PhD. is vice president of clinical programs and head of the Autism Treatment Network (ATN) at Autism Speaks. She recently spoke to Jersey Shore Online/Micromedia Publications about the issues facing families with autistic children. “Many appointments have shifted to telehealth, which is a great alternative but may not be the right fit for every child. There is also an overall lack of connection with the community.”
Autistic adults are also facing unique challenges during this time. From appointments being cancelled, to work being closed, to classes being moved online, there are many different factors that are creating disruption.
“In addition to changes in routine, adults may be experiencing unemployment and changes in independent living situations. For example, while getting groceries may have been a routine task before, that process looks different for everyone now,” Murray added.
Murray noted that “some stores are directing traffic one-way through the aisles or requiring other new procedures, in addition to dealing with product shortages and purchase limits. These changes can quickly pile up and make it extremely difficult for someone with autism to navigate them and get what they need.”
As to what the public can do to help those with autism as the pandemic continues Murray said, “be kind, now more than ever the autism community needs kindness and compassion. At Autism Speaks we are focused on creating a kinder, more inclusive world for people with autism and we encourage the community to be kind and reach out to someone who may be experiencing additional challenges during these trying times.”
“You never know what challenges a particular person is facing, so offering support and understanding can be a universal starting place to help each other right now,” Murray said.
Michele Ruscavage has an autistic son, Michael, who is 17 years old. She has found this time of coronavirus lockdown to be an extremely difficult time for her and her husband Joseph but they have met the challenge.
“It is has been rough, very rough, challenging for sure. Michael is a senior at Monmouth Regional High School and he thrives on routine, school, job sampling, community service, at the gym working out and all of that has been disrupted,” Michele Ruscavage said.
She added, “his anxiety levels are very, very high which leads to many unfortunate behaviors that we do have to address. It has been challenging for him more than any of us because he is suffering terribly in not quite understanding what is truly going on. We try to prepare him for each day.”
Like everyone, the Tinton Falls family had their daily routine radically altered from the start of the pandemic and currently. “Normally he would have gotten up and go to school with a day of academics in a structured environment in a vocational setting. He worked part time at Five Below in Eatontown and some days he would volunteer his time during his lunch break at Red Bank.”
Following his 7:30 a.m. to 2:30 p.m. school day he’d go with his father to the gym and work for about two hours and when his mother came home from work he would take a walk with her around the neighborhood.
“It is kind of our spring routine and every Saturday we’d go to Great Adventure as he’s a big rollercoaster guy. So everything has been affected and what we had to do was create a new routine which took some time. Now there is virtual school in the morning with his great teachers and support staff helping out in the morning,” Michelle Ruscavage said.
She said that in the early afternoon she joins Michael for numerous walks in different beautiful parks in Monmouth County. “When the governor had shut down numerous parks it got very challenging. That made it really tough.”
“I’m glad after a month the governor reconsidered that because it was really, really hard. We do three walks a day, average 10 miles a day by my husband and son right now. We go to virtual church services on Sunday. We’ve done a lot using technology and also staying outside social distancing,” she added.
Michelle Ruscavage said one difficult point of instruction was teaching Michael the rules of using his protective COVID-19 mask. “That was really important for him that he had to understand that people are getting sick so everyone has to protect each other and be distant from each other and wearing a mask. He gets that.”
Michael’s parents managed to create an alternate structure for him “which we continue to prepare him for prepare each day. This is what we are doing, this is what we can do and that is what we are going to focus on with visual aids. He’s not always happy and he does have melt downs occasionally but unlike us when we have uncertainty we can talk ourselves through it I don’t think he is able to do that so my husband and my job is to walk him through it repetitively and it is a lot of work but I think that is all we really can do.”
Michele Ruscavage said that some parents of autistic children use medication more to cope with such situations but we aren’t advocates of that and we feel more of talking through with him that way has shown effectiveness. We are trying to keep it that way.”
Joe and Michele Ruscavage both work at home. Joe is a teacher at Monmouth Regional High School and Michele is a former teacher who is now an administrator at another school district. She occasionally works at home but more often works in an office. Michelle said they are fortunate with their working arrangement which allows them to be there for their son.
Michele Ruscavage said she has a network of colleagues and friends who are in the same situation and have children with autism. “We do talk and strategize as to what works, try this try that so it is a good support model and we help each other.”