April is Autism Awareness Month, and for many living with autism, the COVID-19 pandemic brings a set of new challenges. Since the confirmation of our first Novel Coronavirus (Covid-19) case on March 12th in T&T, our worlds have gradually grown smaller and more uncertain due to measures of social distancing to prevent the spread of the disease. We have all had to adjust to a new reality, normal daily routines have fallen asunder. Coping with the unknown and navigating school closures, furloughs, abrupt changes in routines, loss of in-person contact with family and friends and fear of contracting the virus is a burden for all of us. All of us are coping with the anxiety generated during this period of uncertainty. Most of us have the cognitive and physical ability to adapt to social distancing. However, for those with autism and their families, the adjustment can be particularly difficult. Studies have shown that children with Autism do not do well if their daily routine is disturbed even in the slightest. The breakdown in structure, as well as being confined to small spaces through social distancing, could result in distress or, sometimes, meltdowns in this group.
Autism, a spectrum of disorders (Autism Spectrum Disorder), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communications. Social distancing can make life harder day by day for those with this condition. School, play and a busy schedule helps them cope with Autism. We should be concerned about the struggle of families of those with Autism in a world of smaller spaces and limited activity. These families would have to increase the number of already practiced activities by their loved one with Autism, or invent new ones to create structure in this current time of social distancing. Imagine, for example, a routine of having a bath three times a day, not for the mere routine, but for the water play that addresses the sensory neural needs of some with Autism. This would have to be increased to maybe six times a day for the sake of stimulation and schedule. That puts a lot of additional stress and cost regarding water usage and soap or shower gel for a family already on a limited budget. In addition, with the real fear of Covid-19 entering the homes, those who would have had additional help from hiring caregivers, can no longer rely on such help and now have to deal with the situation alone. Children with ASD may face additional challenges during this stressful period related to deficits in communication, difficulty, understanding abstract language and insistence on sameness.
The Autism charity (AslAm: https://asiam.ie/) in Ireland recently carried out a survey of 300 people through its website to see how people with Autism and their families are coping with Covid-19 reinstructions. It found that many Autistic people really need to regulate and move around. The survey revealed that 80% of Autistic people are finding it difficult to regulate. The survey also found high levels of anxiety and concern exists among people on the Autism spectrum and their families. Others reported agitation, aggression towards self and others, an increase in self-stimulation behavior, poor sleep, perseverating on a topic for several hours and confusion. 78% of people felt that an Autistic person would find it difficult to self-isolate if they became sick. This may be because some Autistic people may not understand the requirement or might require support while they are unwell.
Of course, not everyone with Autism is struggling with the new Covid-19 restrictions. For some, working from home is quite manageable and is a welcome opportunity to slow down. So, what’s the best way to help those with Autism, especially children, to adjust to a new routine during this time of uncertainty?
Designate a place in your home for a sensory bucket. It helps those with Autism stay calm when his/her routine gets flipped upside-down. A sensory bucket is a designated space or container like a piece of property that someone with Autism has where he/she can go get some of the input that they need. This includes their favorite stuffing, putty, playdough or TheraPutty ®. Playing with such things is not only therapeutically healthy, but it is also a great calming tool.
Be honest and communicate about things like washing hands and other practices that prevent the spread of infection. Part of that communication process includes being visual. Adjusting a calendar with them to map out the changes, write out with them as best as you can what is happening and plan out every day. Visual stimulation with a television screen or tablet works well, so we do not want to take those things away necessarily. It should not be a reward or a punishment. Use these tools especially if they gravitate towards them.
Schedule a virtual playdate. We are in the age of technology so children can talk to others on social media or other online interfaces. Families of individuals with ASD should encourage them to have some form of contact via phone or internet with their friends, teachers, medical providers etc., so that social anxiety does not exacerbate once social distancing ceases.
Reach out to your local Autism organization (http://autismtt.org/) and find out what they are doing. Find out what sources and resources are being available for you in your own community.
During this Autism month, now more than ever, we must be mindful that not everyone has a full understanding of the rules of social distancing. It can be hard for some with Autism to wrap their minds around it. Many people are trying their best, and they ask that we keep that in mind.
Dr. Visham Bhimull
Primary Care Physician
MBBS (UWI)
Diploma in Family Medicine (UWI)