Impact of COVID-19 on children and adolescents with autism spectrum disorder (ASD) and their families

Children & adolescents with autism spectrum disorder (ASD) and their parents
are hit hard by the COVID-19 measures. ASD is a developmental disorder that is
characterized by limitations in social communication, repetitive behavioral
patterns, and restricted interests and activities. The current circumstances
greatly task capacities that children and adolscents with ASD normally already
struggle with, particularly social contact and dealing with changes. we expect
that many children and adolescents with ASD, given the diagnostic criteria, and
comorbid problems, as a conequence of the COVID-19 measurements, experience
more stress, anxiety, depression, loneliness, a setback in functioning, and
confusion due to the ever-changing information about the pandemic. This is also
something parents of typically developing children express, especially now the
rules are loosening a bit. In addition, we expect that parents of children with
ASD, who have to take on more care tasks, in addition to their own stress,
worries and work obligations during COVID-19, experience more psychological and
emotional problems. On the contrary, it is also feasible that some families
experience more room now the expectations and pressure of society have
diminished. The concurrence of the events at least put both the children and
families for challenges, that influence the functioning and quality of life of
both children and parents. As children with ASD and their families generally
have limited resilience, there is a realistic change that the impact of
COVID-19 will be long lasting with far reaching consequences. Our collaboration
partners (3 mental health care institutions in the region of South-Holland)
signal the challenges the measurements are causing, which is why we are
combining forces to investigate which children and adolescents with
ASD/families run into issues or not, where the worries are the greatest and how
we may provide support.

Our goals are to investigate 1) the impact of COVID-19 on families with
children with ASD, 2) the risk and protective factors of functioning and 3)
care and information needs. Our results can inform clinical care, parents, and
the government on how to best work with children and adolescents with ASD
during crises.

The study design is an observational mixed-methods cohort study, in which
functioning of a large group of children and adolescents with ASD and their
families is charted during the course of 3 months, by both quantitative (WP1 &
WP3) and qualitative research methods (WP2).
For WP1 we ask participants (T0: N = 68 parents; T1: n = 57 parents and
4 adolescents/young adults) to fill out a survey (which partially overlaps with
intake/routine outcome measurement (ROM) data), now (T1) and after 6 months
(T2). By asking information now in a COVID-19 peak (T1) and in the fall of 2021
(T2), a possibly calmer period in terms of COVID-19, we get a longitudinal
insight of the impact (in relation to resilience) as well as an indication of
the impact of changes in the measurements taken. Part of the survey data will
be compared to intake information and ROM-data (T0: maximum 1 year old from
March 1, 2020). These data are regarding general functioning, ASD
characteristics, and such things and is completely seperate of COVID-19. This
way a natural experiment occurs, in which we can compare relevant data to
pre-COVID-19 functioning of all participants (T0 --> T1 --> T2). In addition,
WP1 will provide information about riks and protective factors.
For WP2 we ask a subgroup of parents (N=27) to participate in individual
semi-structured interviews, to provide more in-depth knowledge with regard to
quality of life, the impact of COVID-19 on family functioning, and (current)
care- and informational needs.
In addition, by collaborating with the Generation R study we can also draw a
comparison between (parents with) children with or without ASD (WP3).
Generation R contacts about 3000 parents and adolescents in the same timeperiod
as our T1 with harmonized questions. By collaborating we can then identify the
impact on families with children with ASD to families with children without
ASD. The Generation R study/data collection is completely seperate of the
current study.

Filling out the two surveys (2x 45 minutes) both by parents and children, and
the participation in the interview (60 minutes) cost the participants time,
which is a downside of participating. For filling out the surveys participants
are compensated (T1 survey = 10 euro bol.com gift certificate, T2 survey = 25
euro bol.com gift certificate). Participants of the interviews receive
compensation in the form of a 25 euro (T1) and 50 euro (T2) bol.com gift
certificate. Other than that, the burden is minimal for the participants, as it
is spread out over a period of approximately 6 months. There are, besides the
time investment no downsides to participating in the study.
The children and parents participating in the study will continue to receive
their care as usual, like medication, supportive contact or individual meetings
aimed at the ASD problems, comorbidity, and parent guidance. This also means
there are no risks to be expected.