Imagine sitting down to work as construction outside hammers your ear drums; the light creating a glare that assaults your eyes. You get up to close the curtains. You move work stations and close the door. Now imagine that this assault on your senses is not something you can escape and you cannot express in words the pain you feel.
For some with autism, this is the reality of life. Autism Spectrum Disorder (ASD) is a neurological condition that affects the way the brain functions, particularly affecting social and communication skills as well as behaviour. It is defined as a spectrum because each person with autism is unique in the types and severity of signs and symptoms experienced. Common symptoms include difficulty communicating, difficulty with social situations, repetitive patterns of behaviours and interest in a limited number of activities. For many, sensory sensitivity and cognitive processing difficulties are also common, in addition to other co-morbid conditions.
Given that an established and predictable routine is imperative for children and adolescents with autism, it is easy to see how lockdowns and changes in how our world functions – the inability to attend usual school programming, meet with usual therapists for in-person sessions and go out for typical day-to-day activities such as grocery shopping – have been challenging.
For some, a home environment that has been calmer, quieter and less distracting than a typical classroom may have been beneficial; for others, staying home and avoiding the stress from daily interactions may have been soothing.
Exhaustion is a word that many parents can relate to after a year and a half of work and school from home. Juggling roles and responsibilities has become essential. For most, the role of teacher in addition to parent has become familiar; for parents of children with autism, the role of therapist also has been added to this list.
Thus, the risk of caregiver burnout has been accelerated, especially for those from vulnerable communities with limited access to support programs. Burnout in parents is detrimental to all children but especially to those who have increased care requirements.
Shannon Des Roches Rosa, one parent of a child with autism whom I spoke with, prioritized sleep and exercise to cope with her feelings of burnout. For families with children with ASD who have not been able to access therapeutic supports, “There’s definitely a lot, a lot, of burnout, and mostly people are just getting through the best that they can,” she says.
Her advice for parents experiencing burnout: “Please don’t blame your child,” emphasizing the enjoyment she has had in spending more time with her child during the pandemic. “When kids have disabilities, our kids need more support, not less. The thing about all of these hardships (imposed by the COVID-19 pandemic) … is the people who need the most support are going to be affected the most. Everything that was already hard for families whose kids didn’t need as much support was harder for countless families whose kids (do) need more support.”
Empathy for children with ASD as they struggle to cope during the pandemic is essential, says Elizabeth Young, a developmental pediatrician at St. Michael’s Hospital. She stresses that losing the ability to participate in favourite hobbies, coupled with loss of structure and routine and difficulty communicating, can add additional stress and frustration that results in dysregulation and, in some cases, can lead to aggression that is dangerous for both the child and the family.
Young also expressed concern over the potential harm increased caregiver responsibilities can have on both the child and family. Respite services that were available to parents in pre-pandemic times were often shut down or operating at reduced capacity as finding respite workers became increasingly challenging. She emphasized the importance of physician involvement to recognize, validate and support parents as they experience burnout.
Ripudaman Minhas, a developmental pediatrician at St. Michael’s Hospital, notes that many therapists who deliver essential services for children with ASD – such as speech, occupational and behavioural therapies – moved online, but these novel techniques have not been validated with research-based evidence. In a survey of adults with autism, the National Institute of Mental Health indicated that 41 per cent of respondents reported a disruption in services during the pandemic and 97 per cent noted that services had been negatively impacted.
Moreover, according to Minhas, the disparity in access to therapeutic and diagnostic services has been such that families that have endured systemic inequality are often more reliant on accessing therapies through a school system, and these channels have become largely inaccessible during the pandemic.
“Empathy for children with ASD as they struggle to cope is essential.”
Heidi Rudyk, an elementary school teacher, says virtual schooling also made it more challenging to identify children that may have autism as well as provide support to those already diagnosed, since visual and behavioural cues are harder to identify.
Rudyk says her stronger students continued to flourish during the past school year while those that had been struggling or needed more support were further disadvantaged and fell further behind, adding that societal inequities and families’ ability to access online schooling and quiet spaces to learn influenced children’s ability to participate in school.
Minhas also acknowledges that families that newly required access to services – perhaps because of a new diagnosis or changing needs – were severely impacted in their ability to access therapies. He adds that early identification and early intervention is essential to get supports in place and maximize children’s developmental potential. Thus, any delays in supports could be detrimental to children with new diagnoses of autism.
This is especially concerning for children from vulnerable or disadvantaged families.
“I think the gaps have widened … and I think we’re going to learn more about that as we look at data around this in the months and years ahead,” says Minhas. “But, certainly in our clinical practices, we are seeing really significant challenges further exacerbated for families that were already pushed to the margins in the pre-pandemic world.”
Minhas says there is much work still to be done. “(The pandemic) has really reminded us of the need for innovation,” he says, referencing the organizations, programs and providers that aim to provide resources and therapies for people with intellectual and developmental delays.
This requires investments to improve access to telemedicine, and tele-education as well as research into teletherapy are essential next steps. We need to focus on creating something that is “pandemic-proof,” in which there are fewer barriers to access and systemic inequalities.
Another area to focus on is increasing respite services for caregivers in addition to increasing physician involvement in detection and support of caregiver burnout.
Lastly, it would be helpful if we could institute a system in which a dedicated crisis team is available for children and adolescents, who can display behaviours that are dangerous for themselves and those around them when they are overwhelmed.
Minhas says he and his colleagues are expecting a rush of new referrals requesting assessment for autism once in-person schooling returns this fall. “We are preparing and schools are also preparing for kids who are now going to be present in the school system for the first time or may have been missed or flown under the radar to be able to connect and to provide timely diagnosis.”