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India


On World Autism Awareness Day, let’s empower parents of kids with ASD

New Delhi, Apr 2 (UNI) One in eight children between the ages of two and nine in India has at least one neuro-developmental disorder, according to a recent community-based study.
This study is based on population-based burden estimates across five regions in India.
World Autism Awareness Day (WAAD) is observed every year on April 2 in order to raise public awareness of Autism Spectrum Disorder (ASD).
The focus of WAAD 2019 is “Assistive Technologies, Active Participation”

The WAAD 2019 observance at UN Headquarters will focus on leveraging the use of assistive technologies for persons with autism.
Mom’s Belief is a start up and its Home programme empowers parents to support their special needs child in the absence of accessible and affordable services, operating from its base outside Delhi.
Also, a dedicated, masters-level child psychologist is assigned to each family here.
Director of Mom’s belief Sunshine Therapy Dr Raj Thapa told UNI, ‘’Autism Spectrum Disorder is not something you notice in physical traits – rather, it affects behavior, especially communication and social skills. These impaired communication and social skills can cause people to avoid or actively exclude those with ASD, and this isolation is harmful to the person with ASD and to his or her family.’’
He said World Autism Awareness Day helps us draw attention to ASD and encourage a better understanding of this disorder.
''We must all take steps to end the isolation and work toward inclusion. Autism Awareness Day is a good time to start,'' added Dr Thapa.

Parents in Tier I cities have access to professionals and resources that can help their special needs child, though many lack the paying capacity to access services.
Parents in smaller cities and villages have almost no access to experienced professionals and resources for their child. They do their best to cope with a child who cannot communicate, or an older child who is far behind in self-help skills.
They watch their school-going child struggle to make friends and experience heartbreak when their child is excluded from social activities. For these families, there is no relief in sight.

“Initially (Mom’s Belief) had such a well-prepared question which covered all the possible aspects to gain information about my kid… In fact the questions they raised even helped me to learn more about my son. Based on the information they offered me to plan accordingly, Rekha, mother of Anil, told UNI.
''The tools I received were so good that me and my son had such a good time doing it. Earlier he was not interested in any activity, but these tools not only increased his interest but also helped him learn a lot,'' she added.

‘’I really appreciate the good work and good intentions of the entire team,’’ added she.

Additionally, family-centered care is the exception, not the norm in India, so parents are not engaged in the support provided to their child. They aren’t taught how help their child on their own.

Psychologists connect with parents using video conferencing, phone, email, and instant messaging.
Guided by a leadership team with expertise in child psychology, paediatric neurology, occupational, speech therapy and special education, the psychologist helps parents to identify goals and create monthly individualised education plans. Teaching tools are delivered to the home every month.

As support is provided remotely, the programme works only with children who have a diagnosis. It uses the child’s medical history and a skill and development assessment to create a neurodevelopment profile, which guides the creation of IEPs.
It empowers parents to support their special needs child in the absence of accessible and affordable services, operating from its base outside Delhi.
A dedicated, masters-level child psychologist is assigned to each family at Mom’s belief. Psychologists connect with parents using video conferencing, phone, email, and instant messaging.
Guided by a leadership team with expertise in child psychology, paediatric neurology, occupational speech therapy and special education, the psychologist helps parents to identify goals and create monthly individualized education plans.
Mom’s Belief was formally launched in 2018. To date, it has supported well over 1000 plus families in 114 cities across India, as well as in the US, UK, and UAE.
According to National Health Portal, ‘’For many people on the autism spectrum, access to affordable assistive technologies is a prerequisite to being able to exercise their basic human rights and participate fully in the life of their communities, and thereby contribute to the realization of the Sustainable Development Goals (SDGs).’’
UNI AE SV 1203
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