‘Parents’ role vital for children with ASD’ | Sunday Observer
Today is Autism Awareness Day

‘Parents’ role vital for children with ASD’

2 April, 2023

World Autism Awareness Day (WAAD) observed on April 2 every year, aims at shining the spotlight on the hurdles that people with autism face daily.

The Sunday Observer spoke to Professor in Paediatric Disabilities, Disability Studies Dept, Faculty of Medicine, University of Kelaniya and the Ayati Centre, North Colombo Teaching Hospital Ragama, Dr. Samanamali Sumanasena to enlighten us about this developmental condition and the important role of parents /caretakers in helping these children reach their fullest potential.


Q. Autism is a health topic not many people understand. What is Autism?

Dr. Samanamali Sumanasena

A. Autism / Autism Spectrum Disorder (ASD) is a neuro-developmental disorder- a condition which results from the abnormal connections within the brain of a child from the time that the brain is developed within the mother’s womb up to early infancy and childhood. This will result in the formation of abnormal pathways by brain cells (neurons) connecting (synapse) to pass messages, especially with regard to how humans socially communicate and interact. Humans are the only species in the world that have a highly complex brain structure that learns new skills systematically over the first five years of life. Majority of such skills are learnt naturally because this highly complex brain architecture enables humans to walk, talk and behave in social circumstances by observing others and through practice. In children or people with Autism this process is not naturally programmed to occur in the brain and is thus characterised by difficulties in social communication and interactions and restricted repetitive behaviours in such people.

Q. What are the main causes that drive this condition?

A. There are few genetic combinations identified, yet the expressivity of genes depends on multiple other factors. It is likely to recur in families and parents with features of social communication difficulties. When they are young around 6-12 months, these may be subtle features such as not always looking at the principal caregiver’s face, or smiling with parents occasionally when stimulated.. Also in some infants it may be just excessive movements of the hands and feet.

Q. Who are most at risk - gender wise and age wise?

A. Males are three times more likely to get ASD than females. ASD is there in children from birth and symptoms become more prominent during the second year of life.

Q. Can a newborn baby have this condition?

A. Yes. Poor latching and early breast feeding difficulties, not responding to baby talk and less smiling, difficulty to console, abnormal body tone with tightening of the whole body or lack of muscle tone are some of the key features during early neonatal period. There are doctors specifically trained to do these assessments.

Q. Symptoms in toddlers and primary school children - what are the differences?

A. The features in toddlers and preschool children may vary largely because the brain development is in different stages in these two groups of children. Toddlers may have very subtle features whereas the preschooler will show prominent and established features.

All these children will show features suggestive of difficulty with social interactions, will have deficits in reciprocal communications, use less non verbal communication skills such as gestures and facial expressions and will play alone. They exhibit repetitive behaviours, and may have a strong attachment to routines that can cause upset when disrupted. They may also have sensory issues, being either hypersensitive/ hyposensitive to certain inputs like loud noises or textures, and may respond with behaviour like covering their ears or avoiding certain environments/foods.

Toddlers may often present because they are not speaking. But often the families report that they sing nursery rhymes, know their alphabet and letters. However, it is important for parents to understand that such skills are not considered verbal skills unless they are used in meaningful contexts. They will also show extreme resistance to small changes.

However, because their brains are growing faster they may respond to interventions better.

In the case of Preschoolers many don’t interact with other students and may wander away from the classroom, or may have difficulties adjusting to small changes and have major behaviour outbursts.

Q. Can a newborn baby have this condition? If so, what are the symptoms?

A. Poor latching and early breast feeding difficulties, not responding to baby talk and less smiling, difficulty to console, abnormal body tone with tightening of the whole body or lack of muscle tone are some of the key features during early neonatal period. There are doctors specifically trained to do these assessments.

Q. Are there different types and degrees of autism?

A. The severity of Autism may vary in children from level 1 (mildest) to level III (the most severe) according to the severity of the symptoms and the impact of such on the daily functioning of an individual in the society. The two groups of features may be communication difficulties or behaviour difficulties. The features that children show will vary depending on the age of children.. These children show very early signs even as young as a few months with impairments in the social smile from early days, abnormal repetitive body movements and lack of back and forth interactions.

They may have difficulties in being put to sleep. Or in contrast these babies may be very silent babies who seek attention from adults rarely and are often labelled by parents as ‘good babies’. They may have early bonding difficulties with mothers resulting in lactation failure of the mothers. These babies may be overly interested in their own body parts such as waving their hands repetitively and looking at them or they may become overly interested in parts of toys and the repetitive spinning, stacking or lining up of toys rather than using them in meaningful pretend play.

Q. Is Autism curable if detected and treated early?

A. Early intervention and appropriate treatment can help manage symptoms and improve functional outcomes for children with ASD. It can lead to significant improvements in communication, social interaction, and behaviour for children with ASD. Early intervention services may include behavioural therapy, speech and language therapy, occupational therapy, and other evidence-based interventions. There is no one-size-fits-all approach to treatment. The effectiveness of treatment may vary depending on the individual child’s needs and the severity of their symptoms. The most well recognised intervention approach is parent mediated home based intensive interventions.

The naturalistic developmental approach encourages parents to use play as a mode of intervention to engage the child to develop his/her skills. In this approach parents need to take the child’s lead and participate in play with the child while maintaining the child’s attention and interactions.

Q. Delay in seeking treatment - What is the adverse health impact on the child?

A. The child’s symptoms may worsen over time if parents delay interventions.

They often miss important developmental milestones, which can delay development of social and language skills. They may have difficulty making friends and engaging in social activities, which can lead to social isolation and loneliness and exhibit challenging behaviours, such as meltdowns, self-injury, or aggression, which can be difficult to manage without appropriate support and treatment.

Q. I understand a multidisciplinary team is needed to treat and diagnose children with ASD. Who comprises this team?

A. Autism Spectrum disorder is diagnosed by a team of healthcare professionals who specialise in the assessment and treatment of autism spectrum disorders. The team includes paediatricians with specific training in child development/ developmental paediatricians/ community paediatricians or child psychiatrists, psychologists or neuropsychologists, speech and language pathologists, occupational therapists, and special education teachers. The ultimate goal of the team is to develop an individualised treatment plan for the child. There are no specific blood or radiological investigations to diagnose ASD. Only play based assessments and parent interviews are required.

Q. Are parents involved in this process?

A. Parents are the most valuable partners in the team. Parents can provide valuable information about their child’s strengths, challenges, and behaviour to help guide the development of an individualised intervention plan. Many interventions for children with autism involve strategies that can be implemented by parents in the home setting and they may be trained on how to implement these strategies effectively. They can monitor their child’s progress in intervention and report back to the intervention team about any changes or concerns, ensuring that they receive appropriate services without any delay in following up.

Q. Education wise, do you advocate special schools for autistic children?

A. This decision depends on the individual needs of the child. Some children with severe autism (Level 3) with major behaviour concerns may benefit from attending special schools that provide a more structured and supportive environment that can address their unique needs.

However, the majority of children should be ideally placed in inclusive education settings where children with Autism share their learning experiences with the typically developing peers in classrooms where they are adequately supported with relevant teaching methods and reasonable accommodations to support their learning experiences

Q. Myths about Autism you wish to debunk?

A. The belief that the diagnosis of autism is something to be feared, whereas early diagnosis can lead to better development outcomes for such children. Another is that Autism is caused by poor parenting, or emotional trauma. Many also believe Autism can be cured with the right treatment. However, I must emphasise that while there is no cure for Autism, early intervention and support can help these children learn and develop skills to reach their full potential.

Q. Intervention - wise, what are the recent steps taken by the Health Ministry as well as civilians to raise more awareness on these issues?

A. The Ministry of Health launched the guidelines for the management of Autism Spectrum Disorder in the year 2023. This is a great achievement for Sri Lanka. Also the College of Paediatricians, Sri Lanka Association for Child Development and the College of Child and Adolescent Psychiatrists are taking many steps to raise awareness.

Q. Gaps you see in the delivery of optimal care for persons with ASD in Sri Lanka? How would you wish to close them?

A. Lack of early intervention services can be a significant barrier to addressing the needs of individuals with autism. It is thus essential to invest in the development of early intervention services in Sri Lanka, such as improving the child development literacy among young families, screening and assessment programs and providing training to healthcare providers and educators.

The lack of opportunities for vocational training and employment is a major challenge for youth with autism, who may have unique talents and abilities and need opportunities to develop and showcase their skills.

Q. What is your message to the parents of children with ASD?

A. You as parents play the most vital role in the lives of your children. If you change the way you interact with your child, if you play more often with your child and talk to them in a warm friendly tone you are likely to make a significant change in the skill level of your child.

It is, therefore, important to seek advice at your earliest to train in these parenting skills, so that you could apply those in your daily interactions with your child. Also keep in mind that seeking early intervention is crucial for the best outcomes for your child as ASD is a complex condition, and your child’s treatment plan may involve a range of interventions, such as behavioural therapy, speech and language therapy, and occupational therapy. It is also important to be consistent with follow-up appointments and treatment sessions.

If you suspect that your child may have autism, seek a professional evaluation as soon as possible. It can make a significant difference in your child’s development.