In India, prevalence of autism spectrum disorder (ASD) is estimated to
be 1-1.4% (1 in 100 children) in children aged 2-9 years [1]. However,
there continues to be a deficit of trained therapists to address these
children [2]. Parent-implemented interventions with adequate guidance
from trained therapists could be the best alternative for young ASD
children [3]. We have developed an online intervention program (SCoPE-EDITT:
Socio Communication Play and Educational Program-Educating Parents on
Direct and Interactive Teaching Techniques) to involve and support
parents in the early intervention of children with ASD (or at risk for
ASD). Parent-implemented intervention also extends the benefits of
intervention to the home environment thereby supporting in
generalization.
The purpose of this pilot study was to find whether
the short term parental training brings about changes in parental
interactive behavior and child engagement skills and also to assess
effectiveness of the SCoPE program. Participants were 22 young children
(Mean age 27.3 months) with diagnosis of ASD/at risk for ASD. Before
beginning the intervention, baseline data on children’s language and
cognitive skills was assessed using Mullen Scale of Early Learning
(MSEL). Parents were asked to play and interact with their child in
their usual way for 10 min in the centre and it was videotaped. Parents’
baseline interactive behavior and children’s engagement skills were
observed and rated using Modified Maternal Behaviour Rating Scale (MBRS)
and Modified Child Behaviors Rating Scale (CBRS) [7]. CBBS identiûes two
domains (attention domain and initiation domain) of children’s
interactive engagement with their parents. In our study, CBRS scale was
modified by excluding affect and persistence items.
Parents were trained over 4 weeks to learn and use
interactive parenting techniques with structured EDITT program and
suggested to use individualized SCoPE based activities during homework
sessions. All children continued regular weekly (weekly twice for 45
minutes) language therapy sessions (with/without sensory integration
sessions based on individual child requirement) with trained therapists.
Parents and their children were followed up for next 9 months. After 1
month of EDITT parental training program, parents showed significant
improvement in all the interactive behaviors, and decline in directive
behaviour parameters of MBRS. At 3 months follow up, parents showed
significant improvement in their interactive behavior and further
decline in directive behaviors (Sensitivity d=4.87, Responsiveness
d=3.78, Effectiveness d=3.37, Achievement d=3.78, Reinforcing behaviour
d=3.08 and Directiveness d=-2.74) with maximum improvement in their
sensitivity towards their children.
At 1 month and 3 months follow up, children showed
significant improvement in their engaging skills in all the parameters
of Modified CBRS, Attention d=4.16, Cooperation d=2.8, Involvement
d=2.5, Initiating behaviors d=1.94). Children showed maximum improvement
in their attention behavior and least improvement in their initiating
behavior.
At 9 months follow up, children showed significant
improvement (P<0.01) in language and cognitive domains of MSEL.
On average, children showed 12.3 months improvement in receptive
language, 10.7 months improvement in expressive language and 9.6 months
improvement in cognitive domain over 9 months of SCoPE based
intervention. 66% children showed improvement equivalent or more than 9
months in all domains.
As per existing scientific evidence, active
involvement of caregivers with appropriate supervision and training as a
form of co-therapy is desirable but there is not much evidence for the
efficacy of parent-mediated approaches [4]. Our study adds evidence to
efficacy of parent mediated approach. SCoPE- EDITT program not only
empowered the parents to serve as co therapists but also facilitated
joint attention, imitation skills, language and cognitive development in
the children with ASD.
Acknowledgement: Dr Akhila Nagaraj, Developmental
Pediatrician, Centre for Child Development and Disabilities.
1. Arora NK, Nair MKC, Gulati S, et al. Neurodevelopmental
disorders in children aged 2-9 years: Population-based burden estimates
across five regions in India. PLoS Med. 2018; 15: e1002615.
2. Mahapatra P, Pati S, Sinha R, et al. Parental
care-seeking pathway and challenges for autistic spectrum disorders
children: A mixed method study from Bhubaneswar, Odisha. Indian J
Psychiatry. 2019;61:37-44.
3. Zwaigenbaum L, Bauman ML, Choueiri R, et al. Early
intervention for children with autism spectrum disorder under 3 years of
age: Recommendations for practice and research. Pediatrics. 2015;
136:S60-81.
4. Mahoney G, Kim J, Lin C. Pivotal behavior model of
developmental learning. Infants Young Child. 2007;20:311-25.
5. Oono IP, Honey EJ, McConachie H. Parent mediated
early intervention for young children with autism spectrum disorders
(ASD). Evid Based Child Health. 2013;8: 2380-479.