Early detection, interventions improve quality of life of Autistic children | Page 2 | Sunday Observer
Shine a light on Autism:

Early detection, interventions improve quality of life of Autistic children

28 March, 2021

In a few days on April 2, thousands of people around the world will light up their buildings, streets and homes in blue to convey an important message – that of promoting early detection and interventions which would help autistic children to lead a normal life despite the obstacles they face.   

 We are fortunate that steps to detect autistic children as early as possible and introduce timely interventions such as home centred activities and vocational training for such children have been put in place with the blessings of the Health Ministry and the State in Sri Lanka, with encouraging results.

The Sunday Observer spoke to the Sri Lanka Association for Child development (SLACD) President, who is also a Senior Lecturer in Paediatrics - Faculty of Medical Sciences, University of Sri Jayewardenepura and Consultant Paediatric Neurologist, Teaching Hospital, Colombo South, Dr Saraji Wijesekara, to share her views drawing on her  hands on how these results were achieved and her experiences in dealing with  such children.  


Q: Autism Awareness Day falls on April 2. What is the theme of this year’s Autism Day? How relevant is it to the needs of the Lankan child with autism?

A: The theme for 2021 is “Shine a light on Autism”. This is to re- focus awareness about persons with autism specially children, which is a subject that needs more attention.

Q: How important is it as a step forward especially with regard to Lankan children with Autism?

A:  The recent Education ministry’s initiatives under the concept of education for all, envisions that every child has some form of education until he/she is 18 years. The vast majority of school leavers are in the ages of 14-17. The implementation of vocational training by the Ministry of Education has played a pivotal role in educating children with disability, such as autism.

Q: Not many people understand what Autism is. Describe Autism in simple language

A: Autism is a condition demonstrating poor social communication skills and some peculiar behaviours that could be repetitive in an affected child. In Sri Lanka, still the presenting complaint is the speech delay as in most developed countries. However, the symptoms and signs vary vastly among persons.

Q: Is autism a disease or a condition?  What causes it?

A: Autism is not a disease entity. It is a condition. The causative factors are yet to be identified. Genetic influence coupled with environmental triggers have shown to be the major risk factors. The dietary components, screen time and lack of stimulatory inputs to the developing brain have been positively associated with many studies.

Q: Are there different types of autism or degrees of autism?  What are the symptoms? 

A: The symptoms of this condition fall into a spectrum. In the study conducted in Sri Lanka, the most significant presentation was the speech delay. When detected late i.e. close to three years and it could be considered a delayed presentation. Others include: Avoidance of eye gaze, lack of interest in the surroundings, living  in his/her own world, not playing with peers, ritualistic behaviour, such as rocking, hand movements, spinning and interest in rotatory objects, such as the fans and rolling the tyres of cars among a range of symptoms. Some may have a jargon of words with no meaning and have echolalia (repetition of the question itself with the same wording). They may not like cuddling, hugging and kissing. Some may be frightened of loud noises or familiar noises, such as the blender and polisher.

Q: How are the symptoms categorised?

A: Depending on the severity of the symptoms, they can be categorised as mild, moderate or severe.

Q: What are the usual outcomes of each episode?

A: The outcome would depend on the severity of the seizure.

Q: I understand there are certain factors that put some people more at risk of getting Autism than others. E.g. those with ADHD.  Do you agree? If so what are they?

A: Children with autism could have many associations. Attention deficit hyperactivity is one such condition. Epilepsy, aggressive and depressive behaviours and learning disability can also be witnessed in some.

Q: Is it correct that teenaged mothers and older mothers are more prone to have autistic children due to low birth weight babies and declining hormones as they reach the end of their menstrual cycle?

A: The hormonal theory could be the reason. However, no quality research publications have proved it so far.

Q: How widespread is Autism in Sri Lanka? Has there been any recent study on the figures?

A: Sri Lanka has only 2000 data which is 1/93. No recent data has been published yet. But from the numbers seeking medical care, it shows that the incidence of autism is increasing and the awareness among public is soaring.

Q: Is Autism curable?

A: Autism is a neurodevelopmental disorder. It is not curable. But early intervention with therapy and guidance would help them lead a normal life including opportunities in education, employment and marriage.

Q: Is it preventable if detected early?

A: As we have multiple factors responsible for autism, it is difficult to implement preventive strategies. However, early detection and intervention with therapy would lead to a better quality of life.

Q: How is it diagnosed and by whom? I understand a multi-disciplinary team is needed to treat and diagnose autistic children. Who comprises this team?

A: The Multi-disciplinary team which delivers this care comprises doctors, nurses, occupational therapists, speech and language pathologists, physiotherapists, psychologists, teachers who have been trained and social workers.

Q: Do they have specific roles?

A: Their role is to help the child improve and each one of them will work on attaining certain short and long term goals for the child ensuring his participation in society. 

Q: How are such children diagnosed?

A: It is a clinical diagnosis. That means the behaviour pattern would help us diagnose it. There are validated questionnaires to be filled by the parents/caregivers, teacher assessments and doctors’ assessments which will help diagnose. Investigations, such as MRI brain, EEG and blood tests would help eliminate other causes and does not help diagnosing Autism.

Q: Are the intervention methods used tailored to the specific needs of each child?

A: The term ‘Joint Attention’ is important. That is the parent and the child have to engage in the same task without any interferences. It is integrated in the daily routine. The speech therapy, behaviour modification therapy, sensory integration activities are some areas that the key stakeholders would work upon.

Q: Tell us about the role parents play in this process? How important is their role?

A: Parents are the best therapists or doctors to their autistic child, as they are the ones who know the child well. They have to carry out activities with their child without any external disturbances (i.e. no mobile phones, talking to friends) and interactive play with the child or read or write. No screens are recommended for regular use in these children as it could, perhaps, make the condition worse.

Q: What are the challenges that face those dealing with the care of autistic children?

A: The lack of literacy about Autism. There is a lack of understanding the condition and directing those afflicted by this condition for early therapy. Most care givers give up as there is no instant cure for the condition. They lack support and are not given adequate recognition for their demanding job.

Q: Today, we have an invasion of new technology and new methods on treating children with behavioural problems. There was a conference you participated recently in which such methods were highlighted. Tell us about some of these new methods and approaches to dealing with children with behavioural problems.

A: There are apps in mobiles where the parents can use to detect initially to check if their child has early signs if the baby behaves in a peculiar manner. There are many reliable sites on the web that provide information to the caregivers as well as the clinicians.

The home-based management is the mode of therapy in our country due to cultural and economic reasons. Video conferencing has been tried with success due to the Covid-19 pandemic. The series of webinars conducted by experts in the field to reach every corner of the country has been successful in the recent past while usage of social media, such as Facebook, YouTube and WhatsApp has been a main source in disseminating knowledge. 

Q: Do you think all Autistic children need to attend special schools? If so why?

A: Education for all and inclusive education for socialising in a normal classroom is the target by the Ministry of education. Moderately affected children who disturb the class and have aggressive behaviours can be managed by teachers for special education. The very severe ones where it is impossible to socialise, the special schools would be the choice. Recommendations by the doctors, psychologists and teachers will have to be considered to decide who needs extra support.

Q: There are still many myths surrounding Autism.  How have they prevented parents seeking early treatment and detection?

A: Parents still lack understanding of the condition and hence delay bringing their child to medical attention. Myths regarding speech is common. They attribute the delay to someone in the family who also started to talk late. This will prevent early identification which in turn reduces the chance of getting proper care at the time of brain development.

Q: Do you see a rainbow of hope for such children in the near future?

A: I am optimistic as the Government has identified childhood disability as a key area that needs attention. A lot of background work is happening i.e. development of infrastructure, trained personnel and motivating families with disability.

Q: Since we are in the midst of a Covid-19 outbreak, how likely are children with autism to get infected with this virus?  Do you have guidelines for protecting them and their caregivers?

A: This is a time for all of us and more so to the children with autism. They have the risk that any other child would have and may not adhere to the rules and regulations.

The guidelines are such that if this child gets the infection, he/she needs to be kept with the reliable caregiver and if caregivers need to be quarantined, the child needs to be with them. The most important message to the caregiver is to practise health guidelines to prevent infection.  

Q: Have you a message for parents and caregivers of children with autism?

A: Autism is not a disease; it’s a condition which the child has to live with for the rest of his/her life. Early detection and intervention at the age where neural connections are being strengthened is key strategy to improve the quality of life in children with autism. Hence do not delay to seek medical advice. Multidisciplinary care is the successful mode of intervention to allow maximum participation of the child in family, school and society.