Received: 12 May 2021 Accepted: 8 September 2021

DOI: 10.1002/aur.2618

RESEARCH ARTICLE

Analysis of the SPARK study COVID-19 parent survey: Early

impact of the pandemic on access to services, child/parent mental
health, and benefits of online services

Anjana Bhat1,2,3

1
Department of Physical Therapy, University of Abstract
Delaware, Newark, Delaware, USA
2
Children with ASD receive a multitude of educational, medical, and therapeutic
Biomechanics & Movement Science Program,
University of Delaware, Newark,
services. At the onset of the COVID-19 pandemic, all of these services came to a
Delaware, USA complete halt following strict lockdowns. Many services have resumed in a hybrid
3
Department of Psychological & Brain Sciences, format using face to face and virtual modes of delivery. This study describes find-
University of Delaware, Newark, ings from the COVID-19 impact survey administered at the onset of the pandemic
Delaware, USA
in a subgroup of families from the SPARK cohort (N = 6393), one of the largest
Correspondence
ASD cohorts in the US. The differential early impact of COVID-19 on various
Anjana Bhat PT, PhD, Associate Professor in subgroups of children with ASD and their families was examined. Caregivers of
Physical Therapy, University of Delaware, children and adolescents with ASD between 19 months and 18 years completed
Newark, DE 19713.
Email: abhat@[Link]
an online survey inquiring about the impact of COVID-19 pandemic on access to
services, parent concerns about the same, impact on child’s ASD-related behav-
Funding information iors, child, and parent mental health, and the benefits/potential benefits of online/
HRSA DHHS, Grant/Award Number: future online services. Analysis revealed that certain demographic (age, income/
R41MC42492; Dana Foundation: Clinical SES) and child-related factors (repetitive behaviors, language, functional, cogni-
Neuroscience Award; National Institutes of
General Medical Sciences, Grant/Award tive, and motor impairments, and child’s understanding), as well as parent’s past
Number: P20-GM103446; National Institutes of mental health were associated with/predicted greater service disruptions, greater
Mental Health, Grant/Award Number: ASD-related behaviors, and greater negative impact on parent mental health. In
R01MH125823
conclusion, younger children, children from low-income families, and children
with greater impairment severity (more severe repetitive behaviors, language, cog-
nitive, function, language, and motor impairments) were more negatively
impacted by the pandemic through service disruptions, increased ASD-related
behaviors, parent health/family impact, and found online interactions to be less
beneficial.

Lay Summary
The SPARK study impact survey shows that at the onset of the COVID-19 pan-
demic, parents reported significant service disruptions, negative impact on their
child’s ASD-related behaviors as well as their own mental health; which was
greater in families with younger children, children with greater ASD severity, and
children from low-income families. Majority of families did not report significant
benefits of online services whereas some families did. Low-income families were
hopeful about receiving benefits through future online services. Overall, these
findings have important implications for future clinical care delivery and
healthcare policies to ensure that healthcare services are not interrupted during a
potential resurgence of COVID-19 or other pandemics. A combination of in-
person and online healthcare and family support services must be implemented to
prevent negative health impacts in the future.

© 2021 International Society for Autism Research, Wiley Periodicals LLC.

2454 [Link]/journal/aur Autism Research. 2021;14:2454–2470.

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BHAT 2455

KEYWORDS
ASD services, Autism Spectrum disorder, child health, COVID-19, online service benefits, parent
health, unmet needs

INTRODUCTION ASD to access various medical, therapeutic, and mental

health services (American Psychiatric Association, 2013;
The COVID-19 pandemic has created a social, economic, Bhat, 2020, 2021; Bhat et al., 2011, 2018; Shield et al.,
and public health crisis within the US and throughout the 2017; van Etten et al., 2017). Children with ASD utilize
world. In the first several months, parts of the US experi- substantially more healthcare and therapeutic services
enced statewide lockdowns and school, clinic, and work- compared to children with other disabilities or no disabil-
place shutdowns that suddenly took away the health ities. They accessed more physician visits each year for
service and social support systems from parents and fami- preventive, nonemergency, and emergency care (90%
lies caring for children with autism spectrum disorder vs. 12%), utilized more physical, occupational, or speech
(ASD). The school and clinical service shutdowns led to therapy services (76.0% vs. 6.3%) compared to children
significant loss of services for children with various dis- without ASD (Gurney et al., 2006). They also received
abilities including those with ASD. In the subsequent more counseling (75.4% vs. 7.0%) and prescription medi-
months, Centers for Disease Control and Prevention out- cations (51.4% vs. 14.5%) for their emotional, develop-
lined various best practices to resume social interactions mental, or behavioral problems (Gurney et al., 2006).
in alternative formats (e.g., online videoconferencing/ However, patterns of service utilization by families hav-
telehealth) as well as limited social interactions along ing a child(ren) with ASD may vary based on demo-
with precautionary measures to prevent virus transmis- graphic, child- or parent-related factors. For example,
sion (e.g., mask wearing, social distancing, hand washing, demographic factors such as race/ethnicity, socio-
and sanitizing surfaces and touchpoints) (Centers for Dis- economic status (SES), insurance status, and geographic
ease Prevention, 2020). These alternative methods of location may hinder their ability to gain knowledge about
social interaction require all individuals including chil- or utilize certain services (Liptak et al., 2008; Monz
dren with ASD to engage in remote/virtual interactions, et al., 2019; Thomas et al., 2007). On the other hand, cer-
resulting in reduced direct human contact, and led to tain child-related factors such as ASD/impairment sever-
drastic changes to daily routines due to restrictions on ity (e.g., greater impairments in the social, language,
travel and socialization. These changes to our natural behavioral, or motor domains) or age (e.g., younger chil-
experiences have resulted in negative mental and physical dren) may be related to greater service needs (Green
health consequences especially, in families and children et al., 2006; Srinivasan, Ekbladh, et al., 2021; White
with disabilities including children with ASD and their et al., 2006). Taken together, different child and family
caregivers (Ameis et al., 2020; Colizzi et al., 2020; Spinelli characteristics will influence service utilization by families
et al., 2020). of children with ASD.
The Simons Foundation Powering Autism Research The caregiving responsibilities for children with ASD
for Knowledge (SPARK) study is one of the largest stud- are substantially higher compared to children with other
ies following the development of children and adults with disabilities or no disabilities leading to greater parental
ASD in the US (Feliciano et al., 2018). In mid-March to stress, marital conflicts, and further negative impact on
early April 2020, the SPARK research team completed family/sibling dynamics (Schieve et al., 2012; Brown,
an online COVID impact survey of families having a Ouellette-Kuntz, Hunter, & Kelley, 2010; Brown
child with ASD as well as independent adults with ASD. et al., 2012). More severe impairment is associated with
The survey findings from dependent and independent greater parental stress and negative impact on family
adults with ASD have been reported by Bal et al., 2021. dynamics (Abbeduto et al., 2004; Bromley et al., 2004).
General findings from the survey in children and adults Parent-related factors such as parent’s past mental
with ASD have been reported by White et al. (2021). health, their personality, their optimism, and their coping
Parental stress measures have been briefly reported abilities play a significant role in dealing with caregiving
recently by Kalb et al. (2021).The goal of the present stresses (Twoy et al., 2007, Ingersoll & Hambrick, 2011;
study was to examine the differential early impact of Baker et al., 2011; Estes et al., 2009). Demographic fac-
COVID-19 on subgroups of children with ASD based on tors such as minority status and SES or available social
various demographic (age, sex, geographic location, etc.), support networks (i.e., informal and professional
child-related (social communication, language, cognitive, childcare and respite support) also play a significant role
functional, and motor impairments as well as repetitive in adding or reducing caregiving stresses (Farmer
behavior severity), and parent-related (i.e., parent’s past et al., 2004; Bromley et al., 2004; Vasipoulou &
mental health) factors. Nisbet, 2016; Galpin et al., 2017).
The complex, multisystem nature of ASD along with It is important to examine parents’ perceived unmet
its co-occurring comorbidities requires children with needs for health and therapeutic services because they are
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2456 BHAT

often charged with the coordination of services for their and more systematic studies will be needed to examine
children and can accurately report the actual barriers to the perceived benefits of adding the option of virtual
accessing services (Brown et al., 2010). Addressing unmet services.
needs will provide greater assistance to families in hopes The COVID survey completed by the SPARK study
of reducing some of their emotional stresses (Bromley families allows us to stratify the large SPARK sample
et al., 2004). Parents of children with ASD generally (N = 6393) based on various demographic, child-related,
express the need for more information on available ser- and parent-related factors. The aim of this study was to
vices, strategies to use with their children, and help coor- identify the subgroups that suffered greatest losses in
dinating multiple services (Cassidy et al., 2008; Ellis ASD services and perceived the most negative impact on
et al., 2002; Krauss et al., 2003; Monz et al., 2019). Com- child and parental emotional and mental health. Parent
pared to parents of children with other disabilities, par- opinions on benefits of online/potential online services
ents of children with ASD express many more unmet for their child with ASD are also reported. Based on
needs, dissatisfaction with services received, and delayed past studies, certain demographic factors such as
access to services (Kogan et al., 2008). Among demo- SES/income and child’s age, parent’s prior health status,
graphic factors, belonging to minorities or lower SES child’s understanding of COVID-19 information, and
were more associated with unmet needs (Farmer child’s ASD severity across different domains will be
et al., 2004; Kogan et al., 2008). Among child-related fac- associated with greater loss of ASD services, more nega-
tors ASD severity, specifically, greater negative behav- tive impact on their ASD-related behaviors, greater par-
iors, lower language, functional, and motor abilities were ent concerns, greater negative impact on child and
associated with greater perceived unmet needs (Palisano parental mental health, and fewer benefits of online
et al., 2010; Douma et al., 2006; Srinivasan et al., 2021). services.
At the outset of the COVID-19 pandemic, stringent
statewide lockdowns of schools, hospitals, clinics, and
workplaces took away various healthcare/therapeutic METHODS
services and social supports for families having children
with ASD, leading to increased caregiving burden on Participants
families. Initial studies in smaller groups of children with
disabilities reported a substantial lack of access to basic At the onset of the COVID-19 pandemic, around mid-
educational and therapeutic services with 43%–60% of March 2020, a subset of parents of children with ASD
children losing educational access, 63%–70% losing from the SPARK cohort were invited to complete the
access to therapeutic services (i.e., physical therapy [PT], COVID-19 impact survey (N = 9249). In this analysis,
occupational therapy [OT], and speech therapy), 53%– the parent survey findings in children and adolescents
73% losing access to behavioral/psychiatric services from 19 months to 18 years of age were examined. For a
(i.e., applied behavioral analysis [ABA] therapy, social multiplex family (i.e., family with more than one child
skills, counseling, psychiatry), and 87%–89% losing with ASD), a single child was selected at random and
access to recreational services that promote physical their issues were reported by the parent completing the
activity and social connections (Jeste et al., 2020). In survey.
Spring 2020, families faced significant challenges due to
substantial loss of services, alterations in methods of
offering services (telehealth vs. face to face), parents hav- SPARK study original procedures and data
ing to play an active role in their child’s virtual therapy/ access
schooling without much support, stresses related to
working from home, unemployment, or caring for multi- Families throughout the US with one or more children
ple children. Together, these challenges may have further with ASD have been recruited in the SPARK study
affected children’s and parent’s emotional and mental through a growing number of sites (i.e., presently 31 clini-
health outcomes (Bellomo et al., 2020; Chen et al., 2020; cal sites) across the US using a multi-pronged social
Kalb et al., 2021; Nonweiler et al., 2020; Spinelli media strategy (Feliciano et al., 2018). Families voluntar-
et al., 2020). As clinicians, educators, and researchers ily signed up for this study by completing the online
started rethinking therapeutic service, learning, and questionnaires ([Link]
research delivery models including protocols in this account_information/) on the SPARK website. They also
author’s lab (Bhat et al., 2021; Srinivasan, Su, received information on studies in their nearby commu-
et al., 2021; Su et al., 2021) many have chosen a hybrid nity to volunteer for local research studies. This author
delivery model – a combination of face to face interac- signed up with the SPARK study to utilize their study
tions with precautions or a remote/virtual mode of care/ recruitment resources (i.e., SPARK Participant Match
education/research delivery. However, remote/virtual Resource) for ongoing research studies approved by the
models of care do not work for all subgroups of children University of Delaware (UD)’s Human Subjects Review
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BHAT 2457

Board. UD also signed an authorization agreement with T A B L E 1 SPARK study demographic information for the sample
the Simons Foundation; after which the author was given used in this analysis
access to latest versions of the SPARK study database Sample size and inclusion/exclusion criteria
(release date: December 2020). Original dataset 9249

Inclusion/exclusion Form completed: 9027,

criteria
SPARK forms and measures Age ≤ 18 years: 7889,
SCQ score nonblank: 7796,
A. The SPARK COVID-19 impact survey included SCQ score ≥ 12: 6393
questions about the negative impact of COVID-19 on Final dataset 6393 included (total excluded = 2856
service-related issues (i.e., service disruptions and [30.9%])
parental concerns about the same), negative impact
Demographics
on child’s ASD-related symptoms, child’s and par-
ent’s emotional and mental health, family-related Sex Female: 1235 (19.3%),
concerns, parental stress, as well as benefits/potential Male: 5158 (80.7%)
benefits of online services (see complete survey in Race/ethnicity Non-White (More than one: 1507 [23.6%],
supplementary data file B). Parents were also asked Asian: 104 [1.6%],
to report on any past mental health issues and their
African American: 248 [3.9%],
child’s school status and understanding of the
Native American: 20 [0.31%],
COVID-19 information/news. Respondents were
asked to select a single best answer on a 4–5-point Native Hawaiian: 3 [0.05%],
Likert scale. For example, parents were asked, “In Hispanic: 6 [0.09%],
the past week, to what extent have (child’s first Other: 50 [0.8%]),
name)’s ASD services or therapies been disrupted White (4191 [65.6%]),
due to COVID-19?” The parent may choose one of Missing: 264 (4.1%)
the following responses: Severely / Moderately / Min- Annual household ≤20 K: 627 (9.8%),
imally / Not at all / Not applicable. income ($) 21–35 K: 782 (12.2%),
B. The SPARK team also asked participating families to
36–50 K: 729 (11.4%),
complete multiple parent questionnaires such as the
basic medical screening form, individual data form, 51–65 K: 608 (9.5%),
and background history form. The basic medical 66–80 K: 667 (10.4%),
screening form includes demographic information, 81–100 K: 667 (10.4%),
birth history, professional diagnosis of ASD and 101–130 K: 657 (10.3%),
other disorders, as well as other general medical con- 131–160 K: 362 (5.7%),
ditions. The individual data form provides details on ≥161 K: 576 (9.0%),
when the ASD diagnosis was made, which profes-
Missing: 718 (11.2%)
sional provided the diagnoses, whether there is a pres-
Geographic location Urban (Large central metro: 1121 [17.5%],
ence of a cognitive impairment, whether there is an
Individualized Education Plan (IEP) for the child, Large fringe metro: 1543 [24.1%],
and whether the child receives ASD services. The Medium metro: 1079 [16.9%],
background history form lists the various intervention Small metro: 543 [8.5%]),
services received by the child as well as information Rural (micropolitan: 462 [7.2%],
regarding cognitive, language, and functional age Noncore: 294 [4.6%]),
level of each participant (i.e., above, at, slightly Missing: 1351 (21.1%)
below, or significantly below same-age peers) which
Age A (years) A ≤ 3: 89 (1.4%),
will be used as a parent-reported outcome for cogni-
3 < A ≤ 6: 1136 (17.8%),
tive, language, and functional delay (at or above,
slightly below, or significantly below peers). Tables 1 6 < A ≤ 9: 1548 (24.2%),
and S1 in supplementary file A summarize the type of 9 < A ≤ 12: 1447 (22.6%),
SPARK study data used in this analysis. 12 < A ≤ 15: 1236 (19.3%),
C. Additionally, three parent questionnaires including 15 < A ≤ 18: 937 (14.7%)
the Social Communication Questionnaire – Lifetime
(SCQ, Berument et al., 1999), the Repetitive Behav-
iors Scale – Revised (RBS-R, Lam & Aman, 2006), i. Social Communication Questionnaire (SCQ) is a
and the Developmental Coordination Disorder Ques- widely used parent questionnaire (Yes/No format) to
tionnaire (DCD-Q, Schoemaker et al., 2006) were screen for autistic traits in children above 4 years of
analyzed. age with a mental age of at least 2 years (Berument
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2458 BHAT

et al., 1999). It is based on a well-validated diagnostic reduced the final sample to 6393 children. These samples
interview, the Autism Diagnostic Interview-Revised were cross-referenced for additional questionnaire and
(ADI-R). The SCQ has two versions – lifetime, participant data from the SPARK dataset version 5 to
which is used to support a diagnosis and - current, extract the details not provided in the COVID-19 impact
which is used to support an evaluation of current dif- survey data, including certain details on demographic
ficulties. The Lifetime version provides a total SCQ information from the standard SPARK forms, and stan-
score and a total score ≥ 12 is indicative of a social dard questionnaire data - SCQ, RBS-R, and DCD-Q.
communication delay and higher likelihood to be on Demographics of this population sample are also
the autism spectrum. The 12-point cutoff used in this presented in Table 1. Key demographics for this sample
study is a research recommended, more sensitive cut- are as follows: 81% are males, 66% are Caucasian,
off score (Lee et al., 2010; Daniels et al., 2011; 24% are multi-racial, there is a fairly equal distribution
Zwaigenbaum et al., 2015; Marvin et al., 2017). of income from ≤20 K to ≥161 K USD, 42% are from
ii. Repetitive behaviors scale-revised or the RBS-R is a large metro areas, and there is a fairly equal distribution
widely used, parent report measure to characterize of age from 19 months to 18 years. Most of the missing
the repetitive behaviors of children with ASDs. It has data was for information on geographic location (21%),
high internal consistency and medium reliability income (11%), and race/ethnicity (4%). Information
(Lam & Aman, 2006). It has six subscales to assess extracted from SPARK forms and standard question-
the child’s stereotyped (I), self-injurious (II), compul- naires is presented in Table S1 in supplementary file A.
sive (III), ritualistic (IV), and sameness behaviors
(V), as well as restricted interests (VI). Each item/
question is scored on a 4-point scale: 0 (no such Subgrouping analysis
behavior), 1 (mild problem), 2 (moderate problem),
and 3 (severe problem). Therefore the total score Similar to the approach in Bhat, 2021, the questionnaire
ranges between 0 and 129 with higher score indicat- data were divided into five subgroups based on the differ-
ing more repetitive behavior. ent ranges for SCQ scores, RBS-R scores, and DCD-Q
scores using each measure’s sample mean and standard
iii. The Developmental Coordination Disorder Ques- deviations (see Table S1 in supplementary file A and
tionnaire (DCD-Q) is a parent questionnaire used to details in Bhat, 2021). Accordingly, the entire sample was
assess a child’s gross- and fine-motor coordination divided into five subgroups ranging from very low, low,
during everyday functional/play skills within their high, very high, and extremely high social communication
natural environment (Schoemaker et al., 2006). It impairments or motor impairments or repetitive behavior
focuses on various motor skills such as ball skills severity. Consistent with previous results in Bhat, 2020
(e.g., hitting or catching a ball), complex body coor- and 2021, this sample also presents with 87.4% of the chil-
dination skills (e.g., jumping, running), fine motor dren reporting motor impairments based on their DCD-Q
skills (e.g., writing, cutting.), and general motor con- performance. Missing data for information on scores was
trol abilities (e.g., quickness, clumsiness, fatigability). 10% for the RBS-R and 22% for the DCD-Q scores,
The total final score is calculated as a sum of the but no data was missing for SCQ scores because presence
individual subscale scores with higher scores indicat- of the SCQ score was a key inclusion criterion.
ing better motor coordination/functioning. Further Data extracted from parent reported levels of cognitive,
details on DCD-Q performance in the SPARK sam- functional, and language delays are presented in Table S1 in
ple can be obtained from Bhat, 2020, 2021. supplementary file A. Similar to the approach in Bhat, 2021,
the parent-reported outcome data were divided into three
subgroups based on the reported level of cognitive, func-
tional, and language delay compared to peers (i.e., at or
Inclusion/exclusion criteria above, slightly below, or significantly below peers). Missing
data on impairment levels was 12% for cognitive, 10%
Out of the 9249 families contacted, 9027 respondents for functional, and 10% for language delays.
completed the COVID-19 survey form. Only one child
with ASD was allowed as a participant from each family,
that is, if a family had more than one child with ASD Statistical analysis
registered in SPARK, one of the children was randomly
selected as a participant for this survey. Table 1 shows Statistical analyses were conducted using JMP Pro 15.0
the subsequent filters applied to ensure inclusion/ (JMP, Inc). Descriptive analyses were conducted to report
exclusion based on robust criteria. Participants above mean and standard deviation for each demographic and
18 years of age were excluded, resulting in 7889 children. child /parent-related characteristics as well as proportions
Only participants who met the SCQ cutoff of ≥12 were of different responses for the COVID-impact survey ques-
included (Lee et al., 2010; Daniels et al., 2011), which tions. Spearman correlation coefficients were used for
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BHAT 2459

F I G U R E 1 Disruption explained by service type (panel a), location (panel b), proportion of responses regarding service impact, concerns, health
impact, ASD related behaviors, family concerns, and online/potential online benefits (panel c), and parent mental health status (panel d)

ordinal or continuous data. Ordinal logistic regression ana- were reported for speech-language therapies (59.8%), spe-
lyses were used to predict the impact on ASD symptoms, cial education (56.7%), physical/occupational therapy
child and parent health impact, and online benefits using (46.8%), ABA/behavioral therapies (36.8%), mental
various demographic, child /parent-related factors. The health (21.9%), recreational therapies (19.9%), other edu-
rationale for the independent variables used was based on cational services (17.1%), medical (12.1%), and early
past literature confirming important factors which impact intervention (EI, 7.3%). In 14% of the sample had miss-
health service access and unmet needs, for example, age, sex ing data, hence, the reported percentages for disruptions
(male, female), minority status (White, non-White), geo- and no disruptions sum to 86% for each service.
graphic location (rural, urban), SES (nine income levels), 80.5% of families reported that their child’s school
child’s ASD severity based on various measures (cognitive, was closed during the pandemic (78.9% due to COVID-
functional or language delay levels, SCQ, DCD-Q, RBS-R 19 and 1.6% due to spring break or other reason). Overall
scoring levels), parent’s past mental health (affected, not disruptions in service locations ranged from 4.0% to
affected), and child’s ability to understand COVID-19 77.1% (Figure 1b). In descending order, disruptions were
information (four levels - completely, moderately, mini- reported at school (77.1%), professional clinic/office
mally, or not at all). For regression analyses, Pearson’s cor- (45.9%), home-based through visiting staff (22.0%),
relations were used to rule out multicollinearity between home-based through parent/caregiver (12.9%), daycare
independent variables (r < 0.6). If an independent variable (5.5%), and residential programs (4.0%). Services that
was moderately correlated with another then only one of were most often accessed through schools and clinics
those two variables was used within the regression analysis. (i.e., speech, special education, and physical/occupational
The Wald test’s chi-square values and its significance levels therapies) were more disrupted than others.
were used to assess which independent variable/coefficients
significantly contribute to a given model and to compare
contributions of coefficients across models. Statistical signif- Impact of COVID-19 on service access, concerns
icance was set at p < 0.05. Bonferroni corrections were used about disruptions, ASD-related behaviors, child
when multiple correlations were performed. and parent health impact, and overall family
concern
RESULTS Figure 1c shows the proportions of different responses
provided for each question. The 80.5% reported school
Service disruptions due to the COVID-19 closure. The 78.5% reported moderate to severe disrup-
pandemic tions in services as a result of the pandemic. The 64.6%
expressed moderate to severe concern about feeling
Overall disruption in types of services ranged from 7.3% stressed or overwhelmed by the service disruptions. The
to 59.8% (Figure 1a). In descending order, disruptions 56.2% reported moderate to severe negative impact on
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2460 BHAT

T A B L E 2 Spearman correlations between demographic (rows 1–5), parent-related (row 6), and child-related factors (rows 7–13) and parent-
reported impact of COVID-19 (columns 2–7) and online/potential service benefits (columns 8–9)
Impact on ASD Parent’s Negative Parent’s Negative Online
Impact on behavior/ concern impact on overall impact on Online benefit potential
services symptoms (due to regarding child’s concern parent’s (perceived benefit (not
(service service service mental about mental benefit from receiving
disruption) disruption) disruption health family health online services) online services)

Sex NS NS NS 0.038 NS NS NS NS
Age 0.216 0.070 0.128 0.097 0.043 0.062 0.142 0.094
Minority status 0.062 0.044 0.040 NS 0.036 NS NS 0.057
Income NS 0.162 0.093 0.062 NS NS NS 0.115
Location NS NS NS NS 0.056 0.053 NS NS
Parent’s past NS 0.051 0.084 0.085 0.042 0.173 NS 0.063
mental
health
Child 0.256 0.153 0.198 0.164 NS 0.066 0.252 0.180
understands
Cognitive 0.158 0.141 0.130 NS 0.037 NS 0.135 0.050
delay
Functional 0.162 0.159 0.133 NS 0.090 0.089 0.129 0.098
delay
Language 0.283 0.104 0.155 0.135 0.054 0.060 0.211 0.144
delay
SCI level 0.088 0.175 0.106 0.094 0.043 NS 0.068 NS
RB level 0.119 0.334 0.232 0.223 0.097 0.107 NS 0.126
MI level 0.149 0.166 0.145 0.043 0.069 0.072 0.153 NS
Abbreviations: MI, motor impairment; RB, repetitive behaviors; SCI, social communication impairment.
Note: Correlations with p < 0.00625 after Bonferroni corrections are shown below, correlations ≥0.1 or ≤ 0.1 are highlighted, and NS indicates not significant.

ASD-related symptoms. The 44.1% expressed moderate the remaining 28.0% thought that there would be mini-
to severe impact on their child’s emotional or mental mal or no benefits (only 57.5% responded to this
health due to pandemic-related concerns. The 80.7% question).
expressed moderate to extreme concern about the impact
of the pandemic on their family or household. The
71.1% expressed moderate to severe impact on their own Associations between demographic factors and
emotional or mental health due to the pandemic and parent-related factors and COVID impact on
49.8% parents said yes to having past mental health service access and concerns
issues.
Figure 1d shows the proportion of different responses Table 2 shows correlations between demographic, child-
for questions related to parent’s mental state. The 65.4% and parent-related factors and impact of COVID-19 on
reported feeling mostly or moderately anxious/nervous, service access, negative impacts, and online benefits.
53.0% reported feeling mostly or moderately hopeful, Among demographic factors, age correlated with
33.3% reported feeling mostly or moderately depressed, COVID impact on services (ρ = 0.22, p < 0.0001) and
27.9% reported feeling mostly or moderately lonely, and parent concerns about disruptions (ρ = 0.13, p < 0.0001)
25.2% reported physical reactions to the ongoing experi- indicating that younger children were facing greater ser-
ences mostly or moderately. vice disruptions and their parents were expressing greater
Only 39.8% felt their child moderately understands concerns about such disruptions. Age also correlated with
the information and news, whereas 60.2% felt that their parent’s perception of benefits from online services
child had minimal to no understanding. In terms of bene- (ρ = 0.14, p < 0.0001) indicating that younger children
fits of online service delivery, only 13.5% were moder- were minimally benefited from online services compared
ately or significantly benefited whereas the remaining to the older children.
18.8% were minimally or not benefited (only 32.3% Household income correlated with negative impact
responded to this question). In terms of potential benefits on a child’s ASD-related symptoms (ρ = 0.16,
of online service delivery, only 29.5% thought their child p < 0.0001) such that lower income families reported a
would be moderately or significantly benefited whereas greater negative impact of the pandemic on their child’s
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BHAT 2461

F I G U R E 2 Impact on services/concerns, ASD-related behaviors, and online benefits as a function of - cognitive delay (panels a–d), functional
delay (panels e–h), and language delay (panels i–l). Negative impacts (severe and moderate) increased and online benefits reduced with increasing
delay from left to right

ASD-related behaviors. Income also correlated with par- (ρ = 0.16, p < 0.0001), ASD-related symptoms
ent’s perception of potential online benefits with lower (ρ = 0.14, p < 0.0001), and parent concerns about
income families perceiving greater benefit of accessing service disruptions (ρ = 0.13, p < 0.0001) indicat-
online services in the future (ρ = 0.11, p < 0.0001) com- ing that parents of children with greater cognitive
pared to higher income families. delays reported greater COVID-related service dis-
Parent’s past mental health correlated with parent ruptions and concerns about the same as well as
health impact (ρ = 0.17, p < 0.0001) such that majority greater negative impact on their child’s ASD-related
of the parents who reported past mental health issues behaviors (Table 2, Figure 2a–d). Additionally, the
were more likely to have a greater negative impact on severity of cognitive delays correlated with perceived
their current emotional or mental health. Lastly, a child’s benefits of online services (ρ = 0.14, p < 0.0001)
understanding of the COVID-19 pandemic correlated indicating that parents of children with greater cog-
with multiple negative impacts including impact on ser- nitive delays were reporting lower benefits from
vice access (ρ = 0.26, p < 0.0001), ASD-related behav- online services.
iors (ρ = 0.15, p < 0.0001), parent concerns about
services (ρ = 0.20, p < 0.0001), and benefits of online/
potential online services (online: ρ = 0.25, p < 0.0001, COVID-19 impact as a function of functional
potential online: ρ = 0.18, p < 0.0001) with children who delay
understood less having more negative impact on their ser-
vices, ASD-related symptoms, and parents noting that The severity of functional delays correlated with
online/potential services were/would be less beneficial to impact on services (ρ = 0.16, p < 0.0001), ASD-
them. However, one unexpected finding was that child’s related symptoms (ρ = 0.16, p < 0.0001), and parent
understanding of COVID-19 information correlated with concerns about service disruptions (ρ = 0.13,
the child’s emotional and mental health (ρ = 0.16, p < 0.0001) indicating that parents of children with
p < 0.0001) with less understanding about the pandemic greater functional delays reported greater COVID-
associated with less impact on their emotional and mental related service disruptions and concerns about the
health. same as well as greater negative impact on their child’s
ASD-related behaviors (Table 2, Figure 2e–h). Addi-
tionally, the severity of functional delays correlated
COVID-19 as a function of cognitive delay with the benefits of online services (ρ = 0.13,
p < 0.0001) indicating that parents of children with
In terms of child-related factors, the severity of cog- greater functional delays were reporting lower benefits
nitive delays correlated with impact on services from online services.
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2462 BHAT

F I G U R E 3 Impact on services/concerns, ASD-related behaviors, and online/potential benefits as a function of repetitive behavior severity
(panels a–d) and motor delay (panels e–h). Negative impacts (severe and moderate) increased with increasing repetitive behavior or motor
impairment from left to right (panels a–c, e–g). Parents of children with more repetitive behaviors were hopeful about potential online benefits (panel
d). But, parents of children with greater motor impairments perceived less benefit of current online services (panel h)

COVID-19 impact as a function of language COVID-19 impact as a function of repetitive

delay behaviors
The severity of language delays correlated with impact Categories of repetitive behavior severity correlated with
on services (ρ = 0.28, p < 0.0001), ASD-related symp- impact on services (ρ = 0.12, p < 0.0001), ASD-related
toms (ρ = 0.10, p < 0.0001), and parent concerns behaviors (ρ = 0.33, p < 0.0001), and parent concerns
about service disruptions (ρ = 0.15, p < 0.0001) indi- about service disruptions (ρ = 0.23, p < 0.0001) indicat-
cating that parents of children with greater language ing that parents of children with greater repetitive behavior
delays reported greater COVID-related service disrup- severity reported greater COVID-related service disrup-
tions and concerns about the same as well as greater tions and concerns about the same as well as greater nega-
negative impact on their child’s ASD-related behaviors tive impact on their child’s ASD-related behaviors (Table 2,
(Table 2, Figure 2i–l). Additionally, the severity of lan- Figure 3a–d). Surprisingly, repetitive behavior severity cor-
guage delays correlated with the benefits of online ser- related with potential benefits of online services (ρ = 0.13,
vices (ρ = 0.21, p < 0.0001) as well as potential benefits p < 0.0001) indicating that parents of children with greater
of online services (ρ = 0.14, p < 0.0001) indicating that repetitive behavior severity expressed some confidence
parents of children with greater language delays were about benefiting from online services in the future. Lastly,
reporting lower benefits from online services and felt repetitive behavior severity also correlated with their child’s
less confident about benefiting from online services in emotional and mental health (ρ = 0.22, p < 0.0001), as
the future. Language delay correlated with parent’s per- well as their own emotional and mental health (ρ = 0.11,
ception of their child’s emotional and mental health p < 0.0001) such that parents of children with greater repet-
(ρ = 0.14, p < 0.0001) such that greater language delay itive behavior severity reported a greater negative impact
was associated with less perceived impact on child’s emo- on their child’s and their own emotional and mental health.
tional and mental health.

COVID-19 impact as a function of motor

COVID-19 impact as a function of social impairment
communication impairment
The severity of motor impairment correlated with impact on
Categories of social communication impairment services (ρ = 0.15, p < 0.0001), ASD-related behaviors
correlated with impact on ASD-related behaviors (ρ = 0.17, p < 0.0001), and parent concerns about service
(ρ = 0.17, p < 0.0001) and parent’s concern about disruptions (ρ = 0.14, p < 0.0001) indicating that parents
service disruptions (ρ = 0.11, p < 0.0001) indicating of children with greater motor impairment reported greater
that parents of children with greater social communi- COVID-related service disruptions and concerns about the
cation impairments expressed greater concerns about same as well as greater negative impact on their child’s ASD-
service disruptions and reported greater negative related behaviors (Table 2, Figure 3(e)-3(h)). Additionally,
impact on their child’s ASD-related behaviors the severity of motor impairment correlated with the benefits
(Table 2). of online services (ρ = 0.15, p < 0.0001) indicating that
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BHAT 2463

T A B L E 3 Results from ordinal logistic regression analyses. Goodness of fit and statistical significance for the whole model is provided for each
dependent variable

Impact Impact on ASD Concern for Child Overall Parent Online

on behavior/ service health family health Online potential
services symptoms disruption impact concern impact benefit benefit

N 4659 3989 3961 5658 4399 3822 1549 3162

R2 0.054 0.067 0.044 0.035 0.013 0.027 0.032 0.028
Probability > chi-
square for the
whole model <0.0001 <0.0001 <0.0001 <0.0001 <0.0001 <0.0001 <0.0001 <0.0001
Wald chi-square

Demographic Sex 5.57 12.23

factors Age 109.71 15.40 34.69 29.57 5.70 14.09 9.32 21.11
Income 27.10 21.87 15.96 22.24 24.73 22.21
Location 16.04 16.03
Minority status 5.72 4.40 15.23
Parent-related Parent’s past 29.49 9.47 5.01 104.96
factor mental health
Child-related Cognitive delay 18.17 10.00 10.84 7.25
factors Functional delay 6.42 7.18 6.33 24.79 17.61 16.63
Language delay 99.94 16.65 96.34 26.17 37.37
SCQ level 5.51 6.02
RBS-R level - RBs 29.54 263.17 118.06 365.88 37.15 13.00 73.76
DCD-Q level - 14.52 9.09 10.40 4.28 16.44
Motor
Probability > chi-square

Demographic factors Sex NS 0.0182 NS 0.0005 NS NS NS NS

Age <0.0001 <0.0001 <0.0001 <0.0001 0.0169 0.0002 0.0023 <0.0001
Income 0.0007 0.0052 0.0430 NS 0.0045 0.0017 NS 0.0045
Location NS NS NS NS <0.0001 <0.0001 NS NS
Minority Status 0.0168 NS NS NS 0.0359 NS NS <0.0001
Parent-related factor Parent’s past mental health NS NS <0.0001 0.0021 0.0252 <0.0001 NS NS
Child-related factors Cognitive delay 0.0001 0.0067 0.0044 NS NS NS 0.0266 NS
Functional delay 0.0404 0.0276 0.0422 NS <0.0001 0.0001 NS 0.0002
Language delay <0.0001 NS 0.0002 <0.0001 NS NS <0.0001 <0.0001
SCQ level NS 0.0189 NS NS NS NS NS 0.0142
RBS-R level - RBs <0.0001 <0.0001 <0.0001 <0.0001 <0.0001 0.0003 NS <0.0001
DCD-Q level - Motor 0.0001 0.0026 0.0013 NS NS 0.0385 <0.0001 NS
Abbreviations: DCD-Q, developmental coordination disorder questionnaire; NS, not significant; RBs,repetitive behaviors; RBS-R, repetitive behaviors scale-revised;
SCQ, social communication questionnaire.
Note: Highlighted cells indicate a substantial contribution based on Wald chi-square (>10).

parents of children with greater motor impairment were child- and parent-related factors. Statistical signifi-
reporting lower benefits from online services. cance of the predictors was assessed using Wald chi-
square values (Table 3). Upon correlating the indepen-
dent variables, only “child’s understanding of COVID-
Predicting impact on services, ASD-related 19 information” moderately correlated with language
behaviors, child and parent health impact, overall delay (ρ = 0.62, p < 0.0001); hence, only language
concern, and online/potential online benefit using delay was included within the regression analysis and
demographics and child /parent-related factors child’s understanding was excluded. No other correla-
tions were above 0.6.
Ordinal logistic regression analyses were used to pre- For the impact on services model, in the order of
dict COVID-19 impact using various demographic, most to least importance, child’s age, language delay,
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2464 BHAT

RBS-R scores, income level, cognitive delay, and School and clinic-based services for children with
DCD-Q scores were the significant contributors to the ASD have a greater risk for disruption in a
model. For the impact on ASD-related behaviors model, future pandemic
child’s RBS-R scores, income level, age, and cognitive
delay were the significant contributors to the model. Majority of the service disruptions in Spring 2020 were for
For service-related concerns model, child’s RBS-R school and clinic-based services that children with ASD
scores, age, parent’s past mental health, language delay, often receive such as speech-language therapies, physical/
income, cognitive delay and DCD-Q scores were the occupational therapies, and ABA/behavioral therapies
significant contributors to the model. For the child (Brown et al., 2010; Chiri & Warfield, 2011; Farmer
health impact model, child’s RBS-R scores, language et al., 2013; Karpur et al., 2018). Interestingly, EI, mental
delay, age, and sex were the significant contributors to health, medical, and recreational services were not reported
the model. For the overall family concern model, child’s disrupted to the same extent. When strict lockdowns were
RBS-R scores, functional delay, income, and location imposed to prevent transmission of COVID-19, schools,
were the significant contributors to the model. For the businesses, and hospitals were closed and not offering out-
parent health impact model, parent’s past mental health, patient therapeutic services. As a result, it is not surprising
income, functional delay, location, age, and RBS-R that a range of therapies came to a halt for several months
scores were the significant contributors to the model. before clinical and educational sites reopened or reinvented
For online service benefits model, language delay and their modes of care/educational delivery. One of the initial
DCD-Q scores were the significant contributors to the reports from parents of children with intellectual and devel-
model. For potential online service benefits model, child’s opmental disabilities found that 74% of the parents reported
RBS-R scores, language delay, income, age, functional loss of access to at least one therapeutic or educational ser-
delay, and minority status were the significant contribu- vice following the onset of the pandemic (Jeste et al., 2020).
tors to the model. The reported percentages are similar to the 79% of the
SPARK families who expressed moderate to severe disrup-
tions in service access with 65% expressing moderate to
DISCUSSION severe concerns about the service disruptions. Along these
lines, Neece et al. (2020) reported parents feeling concerned
The present study examined the differential impact of about loss of services for their children with developmental
COVID-19 in Spring 2020 on a large group of families disabilities and the long-term impact of prolonged lack of
of children with ASD from the national SPARK study. services for their children. Lack of access to services meant
Most service disruptions occurred for school- and that the parents were responsible for providing care and ser-
clinic-based services. A large proportion of families, vices to their child with ASD without any professional sup-
specifically, families with younger children, from low- port. At the time, there were multiple calls for providing
income families, and those having children with vari- alternative means to access healthcare/therapeutic services
ous delays (cognitive, social communication, language, through safe reopening of schools as well as virtual/remote
functional, or motor) as well as greater repetitive interventions, both of which have been implemented over
behavior severity were expressing significant concerns the last year (Aishworiya & Kang, 2021; Dibner et al., 2020;
about the service disruptions and reporting a greater Fontanesi et al., 2020). During potential future lockdowns,
negative impact on their child’s ASD-related symp- it will be important to consider continuing safe methods of
toms. Majority of the parents who reported past mental service delivery through in-person interactions with proper
health issues were more likely to report a greater nega- precautions or meaningful virtual/remote methods to avoid
tive impact on their current emotional or mental large gaps in access to services.
health. Parents of children with greater repetitive Even so, certain service types such as EI, mental
behavior severity reported greater negative impact on health, medical, and recreational services as well as ser-
their child’s and their own emotional and mental vice locations (i.e., home-based, daycare, and residential)
health. However, parents felt that children with greater were not reported as disrupted to the same extent with
language delays and less COVID-19 understanding only 4%–22% reporting disruptions. It is unclear if the
were less negatively impacted in their emotional or families did not access certain services often before the
mental health. Families of younger children and pandemic and hence, did not report concerns (e.g., annual
those with cognitive/language/functional/motor delays physician visits) or perhaps these services were deemed
expressed lower benefits of online services. In contrast, essential at the time and were not closed, or their occur-
low-income families and parents of children with rence was determined by the individual facility, family, or
greater repetitive behavior severity were not receiving clinician involved and hence, still continued. Certain types
access to online services at the time and were more of services or formats of care may be more resilient and/or
hopeful about its future benefits. Next, the significance less affected by nationwide lockdowns. More research is
of these findings and recommendations for the future needed to evaluate the differential nature of the pan-
will be discussed. demic’s effects on various types of services.
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BHAT 2465

Various subgroups of children with ASD faced working from home, job loss, or caring for multiple chil-
significant service disruptions and worsened dren, loss of access to peer/expert interactions, and the
ASD-related symptoms loss of the daily structure of a school day (Ameis
et al., 2020; Bellomo et al., 2020; degli Espinosa
Seventy-nine percent of the families were facing moderate et al., 2020; Manning et al., 2021). Parents of children
to severe service disruptions and 65% were moderate to with disabilities including ASD were reporting increased
severely concerned about the disruption. Eighty-six per- anxiety, depression, and stress due to their caregiving
cent of the families reported moderate to severe negative burden increased ASD-related negative behaviors of their
impact on their child’s ASD-related behaviors and 44% child during the pandemic and challenges they face while
reported moderate to significant negative impact on their managing their child’s behaviors (Chen et al., 2020;
child’s emotional and mental health. There have been Dhiman et al., 2020; Spinelli et al., 2020). Parents of chil-
multiple reports on the lack of access to services for chil- dren with ASD with greater ASD severity as seen by
dren with developmental disabilities including children greater functional delays and repetitive behavior severity,
with ASD for smaller samples (Jeste et al., 2020; Neece and poor understanding about COVID-19, families with
et al., 2020; Spinelli et al., 2020). Parents have also younger children, low income were reporting the greater
reported an increase in challenging / negative behaviors negative health impact on themselves and concerns about
and the need for further coaching/training to better han- their families. It has been well-established that caregiving
dle their child’s increased negative behaviors due to loss stresses are much greater in parents of children with ASD
of structure of a regular school day (Ameis et al., 2020; with greater repetitive behaviors, language delays, and
Chen et al., 2020; Colizzi et al., 2020; Nonweiler functional dependence and need more family supports
et al., 2020). A child’s language abilities and their ability (Srinivasan et al., 2021; Abbeduto et al., 2004, Bromley
to understand the COVID-19 crisis played a major role et al., 2004; Brown et al., 2010). There are a few reports
in negatively impacting their emotional and mental on how family supports such as respite care were not
health and those two issues were found to be related in operational during the initial months of the pandemic
this analysis. Only 44% of surveyed parents of children (Chen et al., 2020; Spinelli et al., 2020). In fact, parents
with ASD reported negative impact on their child’s emo- were expressing need for more respite care services during
tional and mental health. It is possible that parents may the initial months of the pandemic due to school closures
not be accurately reporting on the emotional health of and all the caregiving burden placed on them. In the
their low to nonverbal children with ASD. More impor- future, it would be important to also consider the needs
tantly, the severity of service-related concerns or negative of families of children with ASD and other disabilities
impact on ASD-related behaviors increased in younger when imposing lockdowns in response to resurgence of
children and in those with increasing autism severity COVID-19 or other future pandemics and to have impor-
including worsening cognitive, language, functional, and tant family support services in place to support parents
motor impairments as well as repetitive behavior severity. and caregivers.
Families with younger children, children with greater
impairments, and low income families reported greater
loss in services, concerns about the same, and greater Parents were divided about the benefits of online
negative impact on ASD-related behaviors. This is not services
surprising because even before the pandemic, such
healthcare inequalities impacted the families of children Only a small proportion of families responded to benefits
with greater autism severity, poor adaptive functioning, of online services and about equal numbers found it
and low-income families the most (Brown et al., 2010, highly beneficial (14%) or not beneficial (19%). Low-
2012; White et al., 2021). The COVID-19 pandemic fur- income families expressed potential benefits from online
ther laid bare the pre-existing healthcare inequalities and services in the future suggesting that those subgroups
continues to highlight the greater service needs of families were most negatively impacted in the initial months and
of children in the aforementioned subgroups. were hoping services could be resumed in an online for-
mat. Most importantly, with increasing autism severity
including poor child understanding of COVID-19, wors-
COVID-19 had a negative impact on parent’s ening cognitive, language, functional and motor delays,
emotional and mental health and led to greater there was less online benefit perceived. Similarly, parents
family concerns of younger children reported fewer benefits of online ser-
vices than older children. Both of these trends are plausi-
The COVID crisis significantly increased the parent’s ble in that younger children and children with greater
caregiver burden due to loss of services, having to adapt ASD severity may not be able to attend to the computer
to the altered methods of offering services (telehealth screen for a prolonged period or may not perceive the
vs. face to face), parents having to play an active role in verbal cues or demonstrations presented to them making
their child’s virtual therapy/schooling, family stressors of it difficult for them to engage with online therapist-child
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2466 BHAT

interactions. As a result, the parent will need to play an nonessential clinical interactions such as participating in
active role in explaining, prompting, and reinforcing their a research study during the pandemic.
child or learn the principles from the expert to implement
throughout the day without any professional support. In
both cases, the caregiving burden falls on the parent LIMITATIONS
entirely and managing their child’s care on their own
could easily contribute to parent anxiety and stress. In Reliance on parent report questionnaires is a clear limita-
the future, clinicians must recognize the characteristics of tion of this study. Parent reports of their child’s abilities
the child and family unit. For some children, virtual/ could be influenced by reporting biases such as the Horn
remote services may not be beneficial and they will need effect, i.e., parents of children with greater ASD severity
continued professional support in-home or in-clinic to may have rated higher scores for negative impact. For
facilitate age-appropriate skills. Effective approaches that example, parents may not accurately perceive the emo-
allow face-to-face interactions with precautions such as tional health of their child with language delays. Never-
wearing masks, social distancing, limiting the number of theless, parent reports as opposed to parent interviews or
people present, and sanitizing surfaces and toys will need child assessments are the best way to obtain information
to be implemented. from a large group of families. In spite of the large sam-
At the same time, there was a subgroup of families ple size, there could still be an ascertainment bias due to
(14%) that found online services to be significantly ben- the online nature of the study and inclusion of partici-
eficial, specifically, families with older children and chil- pants from large autism centers in the US. The COVID-
dren with low ASD severity. There was also a 19 impact survey developed by the SPARK study team is
nonintuitive finding of a subgroup of families of children not a validated measure; however, it was a very timely
with greater repetitive behavior severity reporting greater effort to document the service challenges and human
potential benefits of online services. From a family’s per- impact of the pandemic on families of children with
spective, virtual/remote therapies reduce the burden of ASD. Another detail to note is the potentially problem-
traveling to the therapy location and online interactions atic use of the term “Early intervention” as a type of ser-
are more distant/disconnected and hence, less socially vice because parents may know that their child receives
intense and stressful for the child. Even before the pan- speech therapy but may not know that it is through EI-
demic, there was a body of literature including multiple based programming or may associate EI with a different
systematic reviews on the efficacy of telehealth to provide name (e.g., Child Development Watch in Delaware) and
a variety of health services to families living in remote hence, may not accurately respond to the question. Last
and rural areas (Knutsen et al., 2016; Ferguson but not the least, the SPARK study sample is currently
et al., 2018; Sutherland et al., 2018). Telehealth services biased toward a larger proportion of Caucasian and
can be provided through live synchronous interactions or urban families.
asynchronous content that is shared through audio,
video, or written formats (Samadi et al., 2020). However,
face to face or in-person interactions have always been Implications for clinical practice and healthcare
the mainstay of pediatric clinical practice. The pandemic policy
has clearly accelerated the implementation of telehealth
approaches in pediatric practice with the availability of In the future, during a potential resurgence of the
videoconferencing technologies such as HIPAA enabled- COVID-19 or other pandemics, it would be important to
Zoom, transition to online/hybrid education, and the continue access to healthcare services to children with
acceptance of remote videoconferencing among service ASD and other developmental disabilities because access
providers as well as families. A range of therapeutic ser- to care was significantly reduced at the outset of the
vices are being provided virtually including ABA, speech- COVID-19 pandemic. Researchers need to systematically
language, physical and occupational therapies using study the short-term and long-term impact of this pan-
direct child interactions as well as via caregiver training demic on the future outcomes of children with ASD and
(Simacek. et al., 2020; Tenforde et al., 2020; Tomlinson other disabilities. Families have been informing
et al., 2018; Tohidast et al., 2020). This author has modi- researchers such as this author that their child with ASD
fied an ongoing movement intervention clinical trial has lost skills over the last 1 year due to a complete lack
involving face-to-face interventions to a hybrid format of or inconsistent access to services they urgently need.
wherein families are able to choose between in-person With more sites and schools providing hybrid methods
vs. online/telehealth visits to complete testing and inter- for delivering care and instruction, it is important to pro-
ventions as outlined in recent publications (Su vide services based on family preference and child needs
et al., 2021; Bhat et al., 2021; Srinivasan et al., 2021). All- to ensure optimal care. This may require giving families
owing families to choose their preferred mode of clinical the option of in-person services with appropriate precau-
trial delivery has made it feasible to conduct the study in tions or telehealth services for both, healthcare and fam-
spite of hesitancy among families to participate in ily support services. Lastly, parents burdened with the
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BHAT 2467

care of their child with ASD are in urgent need of respite Health and Human Services (HHS) under
care and other related family support services often not [R41MC42492] the Autism Secondary Data Analysis
capitalized upon by parents. Family support services Research (SDAR) Program. The information, content
need to be better developed, promoted, covered through and/or conclusions of this paper are those of the author
insurance and Medicaid programs and made accessible and should not be construed as the official position or
to all families of children with ASD, but especially those policy of, nor should any endorsements be inferred by
having younger children, children with greater severity of HRSA, HHS or the U.S. Government. During the writ-
ASD or other impairments as seen by greater repetitive ing of this manuscript this author’s research was also
behaviors, language, functional, and/or motor delays, as supported by the National Institutes of Mental Health
well as low-income families that may not have access to through an R01 award (Grant #: R01MH125823, PI:
personal childcare/home care networks. Bhat, A.), the National Institute of General Medical Sci-
ences of the National Institutes of Health through a DE-
INBRE Pilot Award / Institutional Development Award
CONCLUSIONS (IdeA) funding (Grant #: P20-GM103446, Site PI: Stan-
hope, S.) and the Dana Foundation’s clinical neurosci-
The present study examined the findings from the ence grant (PI: Bhat, A.).
SPARK study COVID-19 impact parent survey. A large
proportion of parents reported significant service disrup- CONFLICT OF INTEREST
tions and concerns about the same. They also reported a There are no conflicts of interest to report.
substantial negative impact of the pandemic and related
lockdowns on the ASD-related behaviors of their child. OR CID
The negative impact of the service disruption on their chi- Anjana Bhat [Link]
ld’s ASD-related behaviors and their emotional or mental
health increased with increasing ASD severity including REF ER ENCE S
increasing cognitive, language, functional, and motor Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W.,
impairments as well as repetitive behavior severity. A Orsmond, G., & Murphy, M. M. (2004). Psychological well-being
small proportion of families reported minimal to no ben- and coping in mothers of youths with autism, down syndrome, or
fragile X syndrome. American Journal on Mental Retardation,
efits from online services whereas another small percent- 109(3), 237–254. [Link]
age reported significant benefits. More importantly, PWACIM>[Link];2
younger children with ASD and children with greater Aishworiya, R., & Kang, Y. Q. (2021). Including children with develop-
ASD severity were less benefited by online services. Low- mental disabilities in the equation during this COVID-19 pan-
income families were hopeful about receiving some bene- demic. Journal of Autism and Developmental Disorders, 51, 2155–
2158. [Link]
fits through online services. Overall, these findings have Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Cop-
important implications for clinical care delivery and ing, fostering resilience, and driving care innovation for autistic
future healthcare policies to ensure that healthcare ser- people and their families during the COVID-19 pandemic and
vices are not interrupted during potential resurgence of beyond. Molecular Autism, 11(1), 61. [Link]
s13229-020-00365-y
COVID-19 or other pandemics. Hybrid healthcare deliv-
American Psychiatric Association. (2013). Diagnostic and statistical
ery models inclusive of face to face and/or telehealth ser- manual of mental disorders, 5th edition: DSM-5 (5th ed.). Ameri-
vices must be offered to families based on their can Psychiatric Publishing.
preferences and needs. More needs to be done for parents Baker, J. K., Smith, L. E., Greenberg, J. S., Seltzer, M. M., &
with greater caregiving burden to improve knowledge Taylor, J. L. (2011). Change in maternal criticism and behavior
about, accessibility to, and private insurance/Medicaid problems in adolescents and adults with autism across a 7-year
period. Journal of Abnormal Psychology, 120(2), 465–475. https://
coverage for family support services including respite [Link]/10.1037/a0021900
care, childcare, and home-based care, specifically for, Bal, V. H., Wilkinson, E., White, L. C., Law, J. K., Feliciano, P., &
parents of younger children, children with greater ASD Chung, W. K. (2021). Early pandemic experiences of autistic
severity, and those belonging to low-income families. adults: Predictors of psychological distress. Autism Research,
14(6), 1209–1219. [Link]
Bellomo, T. R., Prasad, S., Munzer, T., & Laventhal, N. (2020). The
A CK NO W L E D G M E N T S impact of the COVID-19 pandemic on children with autism spec-
The author is grateful to all SPARK families, SPARK trum disorders. Journal of Pediatric Rehabilitation Medicine, 13(3),
clinical sites, and SPARK staff and appreciates obtaining 349–354. [Link]
access to the phenotypic data on SFARI Base. Approved Berument, S. K., Rutter, M., Lord, C., Pickles, A., & Bailey, A. (1999).
researchers can obtain the SPARK population dataset Autism screening questionnaire: Diagnostic validity. British Journal
described in this study at [Link] of Psychiatry, 175(5), 444–451. [Link]
Bhat, A., Srinivasan, S., Woxholdt, C., & Shield, A. (2018). Differ-
phenotype/sfari-phenotype by applying for the same at ences in praxis performance and receptive language during
the following website: [Link] This project fingerspelling between deaf children with and without autism
is supported by the Health Resources and Services spectrum disorder. Autism, 22(3), 271–282. [Link]
Administration (HRSA) of the U.S. Department of 1177/1362361316672179
19393806, 2021, 11, Downloaded from [Link] by Ondokuz Mayis Universitesi Kutuphane Ve Dokumantasyon, Wiley Online Library on [25/01/2025]. See the Terms and Conditions ([Link] on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
2468 BHAT

Bhat, A., Su, W. C., Cleffi, C., & Srinivasan, S. (2021). A hybrid clinical Degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., &
trial delivery model in the COVID-19 era. Physical Therapy, Scognamiglio, E. (2020). A model of support for families of chil-
101(8), 1–5. [Link] dren with autism living in the COVID-19 lockdown: Lessons from
Bhat, A. N. (2020). Is motor impairment in autism Spectrum disorder Italy. Behavior Analysis in Practice, 13(3), 550–558. [Link]
distinct from developmental coordination disorder? A report from 10.1007/s40617-020-00438-7
the SPARK study. Physical Therapy, 100(4), 633–644. [Link] Dhiman, S., Sahu, P. K., Reed, W. R., Ganesh, G. S., Goyal, R. K., &
org/10.1093/ptj/pzz190 Jain, S. (2020). Impact of COVID-19 outbreak on mental health
Bhat, A. N. (2021). Motor impairment increases in children with autism and perceived strain among caregivers tending children with spe-
Spectrum disorder as a function of social communication, cogni- cial needs. Research in Developmental Disabilities, 107, 103790.
tive and functional impairment, repetitive behavior severity, and [Link]
comorbid diagnoses: A SPARK study report. Autism Research, Dibner, K. A., Schweingruber, H. A., & Christakis, D. A. (2020).
14(1), 202–219. [Link] Reopening K-12 schools during the COVID-19 pandemic. JAMA,
Bhat, A. N., Landa, R. J., & Galloway, J. C. C. (2011). Current per- 324(9), 833–834. [Link]
spectives on motor functioning in infants, children, and adults with Douma, J. C. H., Dekker, M. C., & Koot, H. M. (2006). Supporting
autism Spectrum disorders. Physical Therapy, 91(7), 1116–1129. parents of youths with intellectual disabilities and psychopathol-
[Link] ogy. Journal of Intellectual Disability Research, 50(8), 570–581.
Boulet, S. L., Boyle, C. A., & Schieve, L. A. (2009). Health care use [Link]
and health and functional impact of developmental disabilities Ellis, J. T., Luiselli, J. K., Amirault, D., Byrne, S., O’Malley-
among US children, 1997–2005. Archives of Pediatrics & Cannon, B., Taras, M., Wolongevicz, J., & Sisson, R. W. (2002).
Adolescent Medicine, 163(1), 19–26. [Link] Families of children with developmental disabilities: Assessment
archpediatrics.2008.506 and comparison of self-reported needs in relation to situational
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers variables. Journal of Developmental and Physical Disabilities,
supporting children with autistic spectrum disorders. Autism, 8(4), 14(2), 191–202. [Link]
409–423. [Link] Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., &
Brown, H. K., Ouellette-Kuntz, H., Hunter, D., & Kelley, E. (2010). Abbott, R. (2009). Parenting stress and psychological functioning
Assessing need in school-aged children with an autism spectrum among mothers of preschool children with autism and develop-
disorder. Research in Autism Spectrum Disorders, 4(4), 539–547. mental delay. Autism, 13(4), 375–387. [Link]
[Link] 1362361309105658
Brown, H. K., Ouellette-Kuntz, H., Hunter, D., Kelley, E., & Farmer, J. E., Clark, M. J., Mayfield, W. A., Cheak-Zamora, N.,
Cobigo, V. (2012). Unmet needs of families of school-aged chil- Marvin, A. R., Law, J. K., & Law, P. A. (2013). The relationship
dren with an autism Spectrum disorder. Journal of Applied between the medical home and unmet needs for children with
Research in Intellectual Disabilities, 25(6), 497–508. [Link] autism Spectrum disorders. Maternal and Child Health Journal,
10.1111/j.1468-3148.2012.00692.x 18(3), 672–680. [Link]
Brown, H. K., Ouellette-Kuntz, H., Hunter, D., Kelley, E., Farmer, J. E., Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J.
Cobigo, V., & Lam, M. (2010). Beyond an autism diagnosis: Chil- (2004). Primary care supports for children with chronic health con-
dren’s functional Independence and Parents’ unmet needs. Journal ditions: Identifying and predicting unmet family needs. Journal of
of Autism and Developmental Disorders, 41(10), 1291–1302. https:// Pediatric Psychology, 29(5), 355–367. [Link]
[Link]/10.1007/s10803-010-1148-y jpepsy/jsh039
Cassidy, A., McConkey, R., Truesdale-Kennedy, M., & Slevin, E. Feliciano, P., Daniels, A. M., Green Snyder, L. A., Beaumont, A.,
(2008). Preschoolers with autism spectrum disorders: The impact Camba, A., Esler, A., Gulsrud, A. G., Mason, A., Gutierrez, A.,
on families and the supports available to them. Early Child Devel- Nicholson, A., Paolicelli, A. M., McKenzie, A. P.,
opment and Care, 178(2), 115–128. [Link] Rachubinski, A. L., Stephens, A. N., Simon, A. R., Stedman, A.,
03004430701491721 Shocklee, A. D., Swanson, A., Finucane, B., … Chung, W. K.
Centers for Disease Prevention (CDC) (2020) Interim Infection Preven- (2018). SPARK: A US cohort of 50,000 families to accelerate
tion and Control Recommendations for Healthcare Personnel autism research. Neuron, 97(3), 488–493. [Link]
During the Coronavirus Disease 2019 (COVID-19) Pandemic. neuron.2018.01.015
[Link] Ferguson, J., Craig, E. A., & Dounavi, K. (2018). Telehealth as a model
[Link] for providing behaviour analytic interventions to individuals with
Chen, S. Q., Chen, S. D., Li, X. K., & Ren, J. (2020). Mental health of autism Spectrum disorder: A systematic review. Journal of Autism
parents of special needs children in China during the COVID-19 and Developmental Disorders, 49(2), 582–616. [Link]
pandemic. International Journal of Environmental Research 1007/s10803-018-3724-5
and Public Health, 17(24), 9519. [Link] Fontanesi, L., Marchetti, D., Mazza, C., Di Giandomenico, S.,
ijerph17249519 Roma, P., & Verrocchio, M. C. (2020). The effect of the COVID-
Chiri, G., & Warfield, M. E. (2011). Unmet need and problems 19 lockdown on parents: A call to adopt urgent measures. Psycho-
accessing Core health Care Services for Children with autism Spec- logical Trauma: Theory, Research, Practice, and Policy, 12(S1),
trum disorder. Maternal and Child Health Journal, 16(5), 1081– S79–S81. [Link]
1091. [Link] Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., &
Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Pellicano, E. (2017). ‘The dots just don’t join up’: Understanding
Zoccante, L. (2020). Psychosocial and behavioral impact of the support needs of families of children on the autism spectrum.
COVID-19 in autism Spectrum disorder: An online parent sur- Autism, 22(5), 571–584. [Link]
vey. Brain Sciences, 10(6), 341. [Link] Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., &
brainsci10060341 Sigafoos, J. (2006). Internet survey of treatments used by parents
Daniels, A. M., Rosenberg, R. E., Anderson, C., Law, J. K., of children with autism. Research in Developmental Disabilities,
Marvin, A. R., & Law, P. A. (2011). Verification of parent-report 27(1), 70–84. [Link]
of child autism Spectrum disorder diagnosis to a web-based autism Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental
registry. Journal of Autism and Developmental Disorders, 42(2), report of health conditions and health care use among children
257–265. [Link] with and without autism. Archives of Pediatrics & Adolescent
19393806, 2021, 11, Downloaded from [Link] by Ondokuz Mayis Universitesi Kutuphane Ve Dokumantasyon, Wiley Online Library on [25/01/2025]. See the Terms and Conditions ([Link] on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
BHAT 2469

Medicine, 160(8), 825–830. [Link] children with intellectual and developmental disabilities. Journal of
8.825 Intellectual Disability Research, 64(10), 739–749. [Link]
Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the 10.1111/jir.12769
broader autism phenotype, child severity, and stress and depres- Nonweiler, J., Rattray, F., Baulcomb, J., Happé, F., & Absoud, M.
sion in parents of children with autism spectrum disorders. (2020). Prevalence and associated factors of emotional and Behav-
Research in Autism Spectrum Disorders, 5(1), 337–344. [Link] ioural difficulties during COVID-19 pandemic in children with
org/10.1016/[Link].2010.04.017 neurodevelopmental disorders. Children, 7(9), 128. [Link]
Jeste, S., Hyde, C., Distefano, C., Halladay, A., Ray, S., Porath, M., 10.3390/children7090128
Wilson, R. B., & Thurm, A. (2020). Changes in access to educa- Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N.,
tional and healthcare services for individuals with intellectual and Bagley, A., & Maggs, J. (2010). Family needs of parents of children
developmental disabilities during COVID-19 restrictions. Journal and youth with cerebral palsy. Child: Care, Health and Develop-
of Intellectual Disability Research, 64(11), 825–833. [Link] ment, 36(1), 85–92. [Link]
10.1111/jir.12776 Samadi, S. A., Bakhshalizadeh-Moradi, S., Khandani, F.,
Kalb, L. G., Badillo-Goicoechea, E., Holingue, C., Riehm, K. E., Foladgar, M., Poursaid-Mohammad, M., & McConkey, R.
Johannes, T., Stuart, E. A., Law, K., White-Lehman, C., & (2020). Using hybrid Telepractice for supporting parents of chil-
Fallin, D. (2021). Psychological distress among caregivers raising dren with ASD during the COVID-19 lockdown: A feasibility
a child with autism spectrum disorder during the COVID-19 pan- study in Iran. Brain Sciences, 10(11), 892. [Link]
demic. Autism Research. [Link] brainsci10110892
Karpur, A., Lello, A., Frazier, T., Dixon, P. J., & Shih, A. J. (2018). Schieve, L. A., Gonzalez, V., Boulet, S. L., Visser, S. N., Rice, C. E.,
Health disparities among children with autism Spectrum disorders: Braun, K. V. N., & Boyle, C. A. (2012). Concurrent medical con-
Analysis of the National Survey of Children’s health 2016. Journal ditions and health care use and needs among children with learn-
of Autism and Developmental Disorders, 49(4), 1652–1664. https:// ing and behavioral developmental disabilities, National Health
[Link]/10.1007/s10803-018-3862-9 Interview Survey, 2006–2010. Research in Developmental Disabil-
Knutsen, J., Wolfe, A., Burke, B. L., Hepburn, S., Lindgren, S., & ities, 33(2), 467–476. [Link]
Coury, D. (2016). A systematic review of telemedicine in autism Schoemaker, M. M., Flapper, B., Verheij, N. P., Wilson, B. N.,
Spectrum disorders. Review Journal of Autism and Developmental Reinders-Messelink, H. A., & de Kloet, A. (2006). Evaluation of
Disorders, 3(4), 330–344. [Link] the developmental coordination disorder questionnaire as a screen-
0086-9 ing instrument. Developmental Medicine & Child Neurology,
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., 48(08), 668. [Link]
Perrin, J. M., & van Dyck, P. C. (2008). A National Profile of the Shield, A., Knape, K., Henry, M., Srinivasan, S., & Bhat, A. (2017).
health care experiences and family impact of autism Spectrum dis- Impaired praxis in gesture imitation by deaf children with autism
order among children in the United States, 2005–2006. Pediatrics, spectrum disorder. Autism & Developmental Language Impair-
122(6), e1149–e1158. [Link] ments, 2, 239694151774567. [Link]
Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to 2396941517745674
specialty medical Care for Children with Mental Retardation, Simacek, J., Elmquist, M., Dimian, A. F., & Reichle, J. (2020). Current
autism, and other special health care needs. Mental Retardation, trends in Telehealth applications to deliver social communication
41(5), 329–339. [Link] interventions for young children with or at risk for autism Spec-
3C329:atsmcf%[Link];2 trum disorder. Current Developmental Disorders Reports, 8(1), 15–
Lam, K. S. L., & Aman, M. G. (2006). The repetitive behavior scale- 23. [Link]
revised: Independent validation in individuals with autism Spec- Spinelli, M., Lionetti, F., Pastore, M., & Fasolo, M. (2020). Parents’
trum disorders. Journal of Autism and Developmental Disorders, stress and Children’s psychological problems in families facing the
37(5), 855–866. [Link] COVID-19 outbreak in Italy. Frontiers in Psychology, 11, 1713.
Lee, H., Marvin, A. R., Watson, T., Piggot, J., Law, J. K., Law, P. A., [Link]
Constantino, J. N., & Nelson, S. F. (2010). Accuracy of Srinivasan, S., Ekbladh, A., Freedman, B., & Bhat, A. (2021). Needs
phenotyping of autistic children based on internet implemented assessment in unmet healthcare and family support services: A sur-
parent report. American Journal of Medical Genetics Part B: Neu- vey of caregivers of children and youth with autism spectrum dis-
ropsychiatric Genetics, 1538(6), 1119–1126. [Link] order in Delaware. Autism Research, 14(8), 1736–1758. [Link]
ajmg.b.31103 org/10.1002/aur.2514
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Srinivasan, S., Su, W., Cleffi, C., & Bhat, A. (2021). From social dis-
Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities tancing to social connections: Insights from the delivery of a
in diagnosis and access to health Services for Children with autism: clinician-caregiver co-mediated Telehealth-based intervention in
Data from the National Survey of Children’s health. Journal of children with autism Spectrum disorder. Frontiers in Psychiatry,
Developmental & Behavioral Pediatrics, 29(3), 152–160. [Link] 12, 1–6, 700247. [Link]
org/10.1097/dbp.0b013e318165c7a0 Su, W. C., Srinivasan, S., Cleffi, C., & Bhat, A. (2021). Short report on
Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2021). Per- research trends during the COVID-19 pandemic and use of
ceptions of families of individuals with autism Spectrum disorder telehealth interventions and remote brain research in children with
during the COVID-19 crisis. Journal of Autism and Developmental autism spectrum disorder. Autism, 25(6), 1816–1822. [Link]
Disorders, 51, 2920–2928. [Link] org/10.1177/13623613211004795
04760-5 Sutherland, R., Trembath, D., Hodge, M. A., Rose, V., & Roberts, J.
Marvin, A. R., Marvin, D. J., Lipkin, P. H., & Law, J. K. (2017). Anal- (2018). Telehealth and autism: Are telehealth language assessments
ysis of social communication questionnaire (SCQ) screening for reliable and feasible for children with autism? International Journal
children less than age 4. Current Developmental Disorders Reports, of Language & Communication Disorders, 54(2), 281–291. https://
4(4), 137–144. [Link] [Link]/10.1111/1460-6984.12440
Monz, B. U., Houghton, R., Law, K., & Loss, G. (2019). Treatment Tenforde, A. S., Borgstrom, H., Polich, G., Steere, H., Davis, I. S.,
patterns in children with autism in the United States. Autism Cotton, K., O’Donnell, M., & Silver, J. K. (2020). Outpatient physi-
Research, 12(3), 517–526. [Link] cal, occupational, and speech therapy synchronous telemedicine.
Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the American Journal of Physical Medicine & Rehabilitation, 99(11), 977–
impact of COVID-19 in ethnically diverse families with young 981. [Link]
19393806, 2021, 11, Downloaded from [Link] by Ondokuz Mayis Universitesi Kutuphane Ve Dokumantasyon, Wiley Online Library on [25/01/2025]. See the Terms and Conditions ([Link] on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
2470 BHAT

Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & caregivers: A perspective from the SPARK cohort. Journal of
Morrissey, J. P. (2007). Access to Care for Autism-Related Ser- Autism and Developmental Disorders, 51(10), 3766–3773. https://
vices. Journal of Autism and Developmental Disorders, 37(10), [Link]/10.1007/s10803-020-04816-6
1902–1912. [Link] White, S. W., Scahill, L., Klin, A., Koenig, K., & Volkmar, F. R.
Tohidast, S. A., Mansuri, B., Bagheri, R., & Azimi, H. (2020). Provi- (2006). Educational placements and service use patterns of individ-
sion of speech-language pathology services for the treatment of uals with autism Spectrum disorders. Journal of Autism and Devel-
speech and language disorders in children during the COVID-19 opmental Disorders, 37(8), 1403–1412. [Link]
pandemic: Problems, concerns, and solutions. International Jour- s10803-006-0281-0
nal of Pediatric Otorhinolaryngology, 138, 110262. [Link] Zwaigenbaum, L., Bauman, M. L., Stone, W. L., Yirmiya, N.,
10.1016/[Link].2020.110262 Estes, A., Hansen, R. L., McPartland, J. C., Natowicz, M. R.,
Tomlinson, S. R. L., Gore, N., & McGill, P. (2018). Training individ- Choueiri, R., Fein, D., Kasari, C., Pierce, K., Buie, T., Carter, A.,
uals to implement applied behavior analytic procedures via Davis, P. A., Granpeesheh, D., Mailloux, Z., Newschaffer, C.,
Telehealth: A systematic review of the literature. Journal of Behav- Robins, D., … Wetherby, A. (2015). Early identification of autism
ioral Education, 27(2), 172–222. [Link] Spectrum disorder: Recommendations for practice and research.
018-9292-0 Pediatrics, 136, S10–S40. [Link]
Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies
used by parents of children with autism. Journal of the American SU P P O R T I N G I N FO R M A T I O N
Academy of Nurse Practitioners, 19(5), 251–260. [Link]
1111/j.1745-7599.2007.00222.x Additional supporting information may be found in the
Van Etten, H., Kaur, M., Srinivasan, S., Cohen, S., Bhat, A., & online version of the article at the publisher’s website.
Dobkins, K. (2017). Increased prevalence of unusual sensory
behaviors in infants at risk for, and teens with, autism Spectrum
disorder. Journal of Autism and Developmental Disorders., 47(1), How to cite this article: Bhat, A. (2021). Analysis
1–15. [Link] of the SPARK study COVID-19 parent survey:
Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of
Early impact of the pandemic on access to services,
children with autism spectrum disorder: A systematic review.
Research in Autism Spectrum Disorders, 23, 36–49. [Link] child/parent mental health, and benefits of online
10.1016/[Link].2015.11.008 services. Autism Research, 14(11), 2454–2470.
White, L. C., Law, J. K., Daniels, A. M., Toroney, J., Vernoia, B., [Link]
Xiao, S., Feliciano, P., & Chung, W. K. (2021). Brief report:
Impact of COVID-19 on individuals with ASD and their