How the pandemic has impacted children with disability and their families
For many children with neurodevelopmental disability and their parents, the COVID-19 pandemic has been especially tough, particularly in relation to their mental health.
Here, we talk to clinical psychologist Professor Nicole Rinehart, who specialises in Autism Spectrum Disorders and ADHD, about how COVID-19 has impacted these families and what support measures they might consider.
Firstly, what are neurodevelopmental disorders?
According to the Murdoch Children’s Research Institute website:
“Disorders of early brain development are often called neurodevelopmental disorders and include autism spectrum disorder (ASD), intellectual disability, motor disability (i.e. cerebral palsy), seizures, learning disabilities (i.e. dyslexia), and attention deficit hyperactivity disorder (ADHD).”
These conditions have the following features in common:
- They are first seen in infancy or early childhood
- Brain development is disturbed
- They are stable and do not show episodes of worsening or improving 1.
People with neurodevelopmental conditions may experience a wide range of symptoms including impacted learning ability, difficulties with social integration, and reduced emotional regulation.
Research has found that young people with neurodevelopmental disorders have an increased risk of experiencing poor mental health. You can learn more by downloading information published by Orygen on Neurodevelopmental disorders and youth mental health.
A testing time
The COVID-19 global pandemic has impacted certain members of the population more than most. Children with neurodevelopmental disability and their families for instance.
A recent report by Children and Young People with Disability Australia (CYDA) captured the experiences of children with disability and their families during the first lockdown period.
The survey, which was largely (93%) undertaken by family members and carers, identified a broad range of negative effects, including the impact on their mental wellbeing.
Indeed, half of the survey’s respondents experienced a decline in their mental health, either for themselves or for the child or young person with disability.
They also reported a lack of information about coronavirus targeted to their particular needs, which “exacerbated distress and uncertainty.” They also felt “scared and uncertain” about the best ways to act, which had an impact on the mental health of all family members.
For clinical psychologist Professor Nicole Rinehart, who specialises in Autism Spectrum Disorders and ADHD, this comes as no surprise.
For children with neurodevelopmental disorders, a sense of certainty is really important
“Change can have a significant impact on their mental health, and the upheaval and challenges brought about by the global pandemic have, unquestionably, been particularly hard on these children and their families,” says Rinehart.
“When COVID-19 hit, important routines and vital support systems for supporting mental health were taken away. These families will have strived so hard to put these things in place, too, so to lose them is a double whammy.”
According to the same survey, uncertainty about education was a prominent theme for families with children with disability.
From disruptions to remote and flexible learning programs, to transitioning back to on-site learning, the pandemic has created a unique set of challenges in terms of schooling.
“Transitioning back to on-site learning is likely be a very stressful time for children with neurodevelopmental disorders, as they will also have to work extra hard at achieving successful social interactions with other children all over again,” explains Rinehart.
“They may also find it harder to adjust to the ‘new normal’,” adds Rinehart, who says that a lot of children she works with have been left feeling very stressed and isolated due to lockdown restrictions.
“I also noticed a real spike in obsessive compulsive symptoms and disorders. Some were overthinking and over-worrying, while others developed compulsions where they have to do something a certain number of times for the world to ‘be safe’.”
In this together
Rinehart is keen to reassure families that “it’s very normal to feel unsettled and anxious in this extremely not normal environment.”
“There isn't a rulebook for this chapter in our lives, which is why it’s so helpful for everyone to be in this together,” she says.
Moving forward, Rinehart firmly believes that parents and schools in particular need to work together very closely, placing a priority on children with neurodevelopmental disorders’ social and emotional health.
AllPlay, which Rinehart founded in 2014, aims to improve the quality of life and mental health of young people who experience developmental challenges or disabilities through sport, dance, and education.
Acknowledging the need for current advice and resources, AllPlay Learn developed new content and resources offering specific COVID-19-relevant support for children, families and early childhood educators and teachers as we continue to navigate this tricky time.
Supporting the supporters
Rinehart says the impacts of COVID-19 have been hard on many of the parents of children with disability she works with, and she advises those who take care of young people with disability to make sure they prioritise their mental health and wellbeing.
It’s so important for parents look after their own mental health
“It’s going to take a long time for some people to recover from how stressful and exhausting this time has been. It’s so important for parents look after their own mental health right now,” says Rinehart, who suggests reaching out for professional support – even if it’s accessed in bite-size chunks.
“Even a couple of sessions of psychological support can help parents to regroup and refresh, which benefits the whole family in both the short and long-term.”
For further advice on how parents and carers of children with disability can help support their mental health go here.
- The latest official COVID-19 health advice and information for people with disability and their carers from the Australian Government.
- Find a selection of videos, podcasts and factsheets created to support parents & carers of children with disability during COVID-19 from Murdoch Children’s Research Institute here.
- Mental health & wellbeing resources from Children and Young People with Disability Australia .
- Disability Information Helpline: 1800 643 787 (available Monday-Friday 8am-8pm) for access to information and referrals for people who need help due to COVID-19, including counselling.
1.Source: Orygen, Neurodevelopmental disorders and youth mental health fact sheet.