The Impact of COVID-19 on Autistic Individuals and Caregivers
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During the early part of 2020, the world witnessed an international lockdown in order to manage the spread of the deadly coronavirus. Among many things, these lockdowns meant that educational and clinical institutions that offer essential services to autistic individuals and their families were closed as well. Due to the complex needs of many individuals on the autism spectrum, it is important to explore the impact of the pandemic on the day-to-day lives for these individuals and their caregivers.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder comprising a range of conditions. It is characterized by long-standing social challenges, and restrictive, repetitive and inflexible patterns of behavior, interests, and activities. These symptoms vary in intensity among individuals, and they may change over time.
Although past descriptions of autistic individuals have categorized them as either high functioning or low functioning, advocacy in the autistic community has led to the revision of these terms. Instead of low functioning, individuals are described as “high support need” (in need of more help and intensive care), and instead of high functioning, they are described as “low support need” (requiring less help and intensive support). At the time of writing this article, research on the impact of COVID-19 focused on each group was still very limited; however, it can be assumed that autistic individuals with high support needs are the most impacted by the pandemic.
In a world that is designed for neurotypical individuals, autistic individuals and their families face a number of unique challenges. Some of these challenges include co-occurring physical and mental challenges (for example, gastrointestinal problems) sleep problems, attention-deficit/hyperactivity disorder (ADHD), anxiety and depression.
ASD prevalence continues to increase worldwide, with significant prevalence recorded in developed countries. Although early childhood diagnosis and intervention has proved to be a cornerstone in the development of autistic individuals across all spheres of life, access to services and support is inadequate.
With the advent of the COVID-19 pandemic, autistic individuals are experiencing challenges at a heightened level.
Impact of COVID-19 on Autistic Individuals
Strong needs for sameness and a structured routine, both core features of autism, have been disrupted by the pandemic. The personal environment fit is essential in the normal functioning of autistic individuals. For example, restrictions in the access of regular services have impacted physical health, mental health and family relationships/interaction in the lives of autistic individuals. For autistic individuals who prefer a specific diet, COVID-19 imposed lockdowns may result in increased stress and a decreased food intake.
The closure of schools and regular programs that promote different activities in autistic individuals means that there is less physical exercise — a cause for concern as autistic individuals experience higher rates of obesity. Screen time, which is already increased among autistic children, is another challenge that is directly linked to sleep problems, aggressive behavior (dominantly directed towards the caregiver), and anxiety. It is expected that individuals who prior to the pandemic displayed behavioral challenges are likely to be more affected by them now.
COVID-19 has also impacted autism diagnostic services that traditionally center in-person, interaction-based behavioral interaction. However, physical distancing may result in additional delays in the diagnosis, compounded by already long waiting lists. These delays will deprive autistic individuals of the medical and educational services that are needed to facilitate their development, health, and well-being. To deal with this challenge, many diagnostic practices (especially those dealing with children) have incorporated video-based naturalistic and caregiver mediated behavioral observation. However, this alternative approach is not practical in contexts where resources are limited or non-existent.
Impact of COVID 19 on Caregivers of Autistic Individuals
A review study funded by the Canadian Institutes of Health Research aimed to identify the gaps in mental health and well-being needs of caregivers and families of autistic individuals. It found that parents of autistic children and adolescents experience more mental health problems compared to families with neurotypical children, and even parents with children with other brain-based development conditions.
Families and caregivers of autistic individuals often experience high demands and spend a considerable amount of time addressing them. They provide around-the-clock care, act as therapists, advocates, navigators, or teachers in providing support to their autistic children, and manage high rates of child and adolescent difficulties, all while balancing their own needs, careers, and other family members. With the advent of COVID-19, the health challenges faced by autistic individuals are likely to be more prevalent. And with social distancing requirements leading to the closure of service centers, caregivers have the added responsibilities with no outside assistance.
There is a need to implement short-term and long-term alternative routines in order for autistic individuals and their families to cope with such emergency situations as the current pandemic. This may include setting a schedule at home for bedtime and morning routines, facilitating sensory stimulation, regulating screen and media time, taking note of daily hygiene and balanced food intake, and incorporating physical exercise.
It is also crucial to maintain ongoing access to educational services and clinical care, presently achieved via videoconferencing and online communication with autistic individuals and their families.
Thus, there is an urgent need for governments and public and private autism organizations to engage with the autistic community to find solutions. For example, professional bodies providing training to parents and caregivers, the majority of whom have become primary intervention providers, can be a practical solution for families who cannot afford telehealth and videoconferencing services on a prolonged basis.
Although these solutions are good alternatives, their implementation and success depend on many variables. These include the availability of resources, the availability of caregivers, and the needs of the autistic individual.
As such, the impact of COVID-19 on the autistic community and their families will vary according to contextual factors such as individual and family needs. And as more conclusive research is conducted in different parts of the world, there will be a more comprehensive understanding of COVID-19 on the autistic community and their families in the future.
COVID-19 restrictions have impacted the mental, emotional, and physical well-being of autistic individuals and their caregivers at a heightened level.
Although educational and clinical services for autistic individuals have been adapted to online alternatives, there are many more individuals and families who have no access to these resources.
Intervention measures and caregiver assistance from the governments, local governments, and other public and private autism organizations are needed.
More research in different world contexts, especially among marginalized communities and developing countries, is needed in order to attain comprehensive results on the impact of COVID-19 on autistic individuals.