April is World Autism Awareness Month. Autism Spectrum Disorder (ASD) is a complex developmental condition that presents challenges in social interaction, verbal and non-verbal communication, as well as restricted and repetitive behaviours.
Autism affects different individuals in different ways, which is why it is referred to as a spectrum condition. Like all people, no two individuals on the spectrum are the same, each person has their strengths and weaknesses that are unique to them.
Routines are often extremely important to children and adults with ASD. In fact, as previously mentioned, one of the primary diagnostic criteria for people on the spectrum is that they have restrictive, repetitive behaviour patterns, activities and interests. They often rely on familiarity and are relatively intolerant to changes in routine to the point that any deviation from routine can result in anxiety, and tantrums.
For a second year in a row, we celebrate World Autism Awareness Month amid a global pandemic; one that has disrupted all our lives in unprecedented ways. While it has been a great challenge for us all to adjust to social distancing and stay-at-home orders, families with individuals with developmental disorders have been disproportionately affected.
The impacts of this global pandemic have been felt firsthand by those with ASD, their caregivers and their families. Caregivers raising or taking care of people on the spectrum often utilise multiple services and multiple providers for their children’s educational, functional, and vocational needs. Findings from one pre-pandemic study have suggested that the majority (83-96%) of school-aged children on the spectrum in the US receive some form of support services or therapy.
Research shows that individuals with ASD often learn best in situ, and they struggle with generalisation. This means that a skill is ideally taught within the same context that it is performed, so daily living should be taught at home, and educational and vocational learning should be done on site. This means that therapy through telehealth and remote learning, while in some cases have worked, they may not be ideal in these circumstances.
One study that surveyed 3,502 parents and/or caregivers of individuals on the spectrum found that during the pandemic, most participants were not receiving telehealth services at follow-up, and of those who were receiving them, they reported minimal benefit.
Children under the age of 5 especially struggled from disrupted services and their caregivers were less likely to report any benefit from services delivered remotely. Caregivers that were surveyed as part of this study also reported a worsening of symptoms, and an increase in family reported distress.
In Qatar, researchers from Hamad bin Khalifa University’s Qatar Biomedical Research Institute (QBRI) and the World Innovation Summit for Health (WISH), both Qatar Foundation entities, presented findings from their first survey that looked at the impact of the pandemic on those with ASD. The study, presented at the virtually hosted WISH summit that took place last November, was conducted by QBRI in collaboration with WISH and Qatar Autism Society.
Similar to the findings from international studies, in Qatar, researchers found that only 19% of the caregivers they surveyed reported that they had accessed some form of interventional therapy for their children, which has resulted in the regression and worsening of symptoms in some children.
Seeing as individuals on the spectrum are especially vulnerable in situations of crisis such as the Covid-19 pandemic, it is absolutely critical that emergency preparedness and planning ensures that this population receives the essential support services they need during this crisis and for future crises to come. Guidelines and strategies that support the ASD community should be developed and implemented urgently.
In order to develop interventions that can be delivered remotely to individuals of all ages with ASD, additional and accelerated research is needed. It is also recommended that, in the meantime, service providers consider alternative solutions that, in critical circumstances, allow for some in person contact in a safe and protected environment. Support services should also be extended to caregivers and families, who may be feeling especially distressed during this time.
Even as we slowly emerge out of the pandemic, it is important that we as a community continue to work on finding solutions to help and support those with ASD and their families, keeping in mind that the exit is also likely to be stressful, as individuals with ASD will have to learn to re-engage with settings and activities that they were once comfortable with but perhaps no longer are.
Maha El Akoum, MPH, is a public health professional currently working as Head of Content at World Innovation Summit for Health [WISH].