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Indian Pediatr 2021;58: 890-891 |
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Autism
Spectrum Disorder in the COVID 19 Era: New Challenges - New
Solutions
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Rahul Bharat,1* Uzaina,2
Sanjay Niranjan,3 Tribhuvanesh Yadav,4 Sue Newman,5 Jonathan Marriott,6
Gemma Smith,7 Garima Sawlani2
1 Department of
Pediatrics, Royal Cornwall Hospitals Truro, Truro, United Kingdom; 2 Geniuslane Child Development Centre, Lucknow, India; 3 Neo Child Clinic, Lucknow, India; 4 Global Child Clinic, Lucknow India;
5 Children’s Services, Cornwall Partnership, 6NHS Foundation Trust, Truro, United Kingdom;
7 ASD Assessment Team, Children’s Care Management Centre, Cornwall Partnership NHS Foundation
Trust, Truro, United Kingdom.
Email: [email protected]
Published online: June 28, 2021;
PII: S097475591600351
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This survey explored the support
available and the effect of lockdown on children with autism spectrum
disorder and their families in India and the United Kingdom. Our
findings showed significant problems for children and families due to
lockdown. App-based information delivered to parents with support showed
encouraging feedback.
Keywords: Anxiety behavior, App-based support,
Lockdown, Telehealth.
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During the coronavirus disease 2019 (COVID-19)
lockdown, all face-to-face support and planned activities of children
with ASD were interrupted. This brought a significant change of routine
for them [1]. They reported higher levels of anxiety, reduced
dispositional hope, and psychological well-being [2]. Information
technologies have been an essential tool during these challenging times
[3]. Studies have reported positive effects of parental empowerment with
training and support using technological platforms [4]. We investigate
the impact of lockdown on children with ASD and their families in India
and the UK.
Parents of 45 children with a confirmed diagnosis of
ASD - 15 from Conwall, United Kingdom [mean (range) age, 11.06
(7.02-17.05) years] and 30 from Lucknow, India [mean (range) age, 5.2
(2.11- 8.07) years] participated in the survey. Children with confirmed
ASD were identified from clinical records of the child development
center in Lucknow and Cornwall. Consent was obtained and General Data
Protection Regulation guidelines were followed during data collection
and analysis.
A semi-structured survey was constructed. It included
four variables: change in behavior (CIB), change in the routine (CIR),
regression in skills (RIS), and parental stress (PS) (Web Fig. 1).
The final survey was reviewed by an expert panel, and their suggestions
were included before conducting the telephonic survey. Speech and
language therapists in the UK and trained child psychologists in India
conducted telephonic surveys in mid of April over two weeks. Each
interview took approximately 45 minutes. All questions on CIB, CIR and
RIS were rated on an 8-point scale ranging from 0 to 7 and for PS on a
5-point scale ranging from 0 to 4.
Nonparametric t-test, Pearson correlation and
multivariate regression analysis were calculated to measure the
difference, bivariate associations, and the impact of lockdown on the
study variables.
The mean rank for CIR, PS and CIS were higher in the
UK as compared to India, whereas there was no significant difference in
CIB. CIR and CIB were reported for all children. All parents reported
increased PS (Table I). There was a significant correlation of
change in behavior score with change in routine score (r=0.446, P<0.01),
regression in skills score (r=0.750, P<0.01) and parental
stress score (r=0.370, P<0.05). Parental stress score also
significantly correlated with change in routine (r=0.535, P<0.01)
and with regression in skills (r=0.375, P<0.05).
Regression in skill and change in routine scores were also significantly
correlated (r=0.410, P<0.01).
Table I Impact of Lockdown on Children With Autism Spectrum Disorder and Their
Families in India and United Kingdom
Group |
Mean rank (SD) |
P value |
Change in behavior |
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India |
24.0 (10.49) |
0.45 |
UK |
20.9 (10.49) |
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Change in the routine |
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India |
18.22 (4.44) |
0.01 |
UK |
32.57 (4.44) |
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Regression in skills |
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India |
22.28 (2.84) |
0.61 |
UKa |
24.43 (2.84) |
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Parental stress |
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India |
17.18 (6.30) |
0.01 |
UK |
34.63 (6.30) |
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Number of families
enrolled UK-15, India-30. Proportion of parents who
reported changes in the variable during lockdown was
100% for all variables except a78.6% for regression in
skills from UK. |
Parents and families reported extra difficulties in
managing adults with ASD [5,6]. In the UK, children with ASD are
provided diagnosis based on NICE guidelines. Necessary support is
provided through schools, along with parental courses offered by the
local council. Additional help is available through pediatricians,
speech and language, child and adolescent mental health services,
occupational therapy, and support groups. In Lucknow, children were
assessed by a multi-professional team. The diagnosis was confirmed using
ADI-R. The families who enroll in the early intervention program were
provided with a home program support app.
Disruption in routine due to lockdown affected the
behavior of children with ASD [1]. Change in routine was positively and
significantly correlated with change in behavior, regression in skills,
and parental stress, similar to previous reports [5].
In Cornwall, the parents’ interview explained a lack
of support or contact because of the long waiting list of appointments
with professionals before the pandemic, which worsened with the
lockdown. Studies reported a lack of support for both autistic
individuals and their family’s post-diagnosis prior to lockdown [8,9].
The mainstay of autism treatment is parental training
and environmental modification around the child [10]. This study
identified a gap in empowering parents with resources post-diagnosis
that they can access when required. The app model support has shown
promise, but parents needed support, despite using the app. Due to the
lack of appropriate measures, we were unable to measure the psychometric
of the survey. However, the finding of this study is based on the direct
parent’s experiences, which is a strength of the study. The result
helped in re-establishing the important role of routine and structure in
children with ASD (Web Table I).
In conclusion, COVID-19 lockdown brought an
opportunity to reassess our services for children with ASD.
Technology-mediated support showed encouraging feedback of being used in
combination with clinical practice.
Acknowledgements: Rohan Pandey and Shipra Verma
for helping in conducting the survey in India.
Note: Additional material related to this study
is available with the online version at www.indianpediatrics.net
Ethics approval: Royal Cornwall Hospitals
NHS trust Audit department, ID 1721.
REFERENCES
1. Colizzi M, Sironi E, Antonini F, et al.
Psychosocial and behavioral impact of COVID-19 in autism spectrum
disorder: An online parent survey. Brain Sci. 2020;10:341.
2. Ersoy K, Altýn B, Bayram SB, Güngörmüþ OO. The
comparison of impact of health anxiety on dispositional hope and
psychological well-being of mothers who have children diagnosed with
autism and mothers who have normal children in Covid-19 pandemic
[Turkish]. Sosyal Bilimler Araþtýrma Dergisi. 2020;9:117-26.
3. Eshraghi AA, Li C, Alessandri M, et
al. COVID-19: overcoming the challenges faced by individuals with
autism and their families. Lancet Psychiat. 2020;7:481-83.
4. Lai MC, Anagnostou E, Wiznitzer M, et al.
Evidence-based support for autistic people across the lifespan:
Maximizing potential, minimizing barriers, and optimizing the
person-environment fit. Lancet Neurol. 2020;19:434-51.
5. White LC, Law JK, Daniels AM, et al. Impact
of COVID-19 on individuals with ASD and their caregivers: A
perspective from the SPARK cohort. J Autism Dev Disord. 2021:1–8 [Epub
ahead of print]
6. Singh S, Roy D, Sinha K, et al. Impact of
COVID-19 and lockdown on mental health of children and adolescents:
A narrative review with recommendations. Psychiat Res. 2020;293:
113429.
7. Davis NO, Carter AS. Parenting stress in
mothers and fathers of toddlers with autism spectrum disorders:
Associations with child characteristics. J Autism Dev Disord. 2008;38:1278.
8. Crane L, Batty R, Adeyinka H, et al. Autism
diagnosis in the United Kingdom: Perspectives of autistic adults,
parents and professionals. J Autism Dev Disord. 2018;48:3761-72.
9. Jones L, Goddard L, Hill EL, et al.
Experiences of receiving a diagnosis of autism spectrum disorder: a
survey of adults in the United Kingdom. J Autism Dev Disord.
2014;44:3033-44.
10. Beaudoin AJ, Sébire G, Couture M. Parent training interventions
for toddlers with autism spectrum disorder. Autism Res Treat.
2014;2014:839890.
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