World Autism Awareness Day on April 2 will shine the spotlight on a subject that has up to now not been given enough attention. As experts in Early Child Development from across the world gather to discuss ways in which the autistic child can have the opportunity to develop his or her fullest potential, here in Sri Lanka various interventions have already been put in place by the Ministry of Health with Government support.
The World Autism Awareness Day theme for 2021 is ‘shine a light on autism’ thereby increasing awareness about those who have autism especially the children. To commemorate this Day the international community will light up hundreds of thousands of landmarks, buildings, homes and communities around the world in blue- ‘Light it up Blue.’ This will improve knowledge about autism and deliver information on how important it is to detect early for early intervention.
The Sunday Observer asked President Sri Lanka Association for Child Development (SLACD), and 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 expertise with our readers and parents of children with autistic and other neurological disabilities .
Excerpts of the interview:
Q. The current priority of the Government is to give every Lankan child an opportunity to develop to his/her fullest potential. Do you think this is a step forward, especially, in the context of children with certain inherent disabilities such as autism?
A. Yes. In Sri Lanka we attempt to detect children with autism as early as possible and carry out home entered early intervention. Starting with the Education Ministry initiatives under the concept of education for all, each child will have some form of education until they are 18 years.
As the majority of school leaving happen around the ages of 14-17 the implementation of vocational training by the Education Ministry has made a pivotal role in educating children with disability such as autism. Further, the paid apprentice period in governmental and non- governmental organisations is an important milestone in ensuring the future of these children.
Q. Autism is a subject that not many people understand. How would you describe Autism in simple laymen 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 the presenting complaint is speech delay as in most developed countries. This is identified as a spectrum as the symptoms and signs vary vastly among individuals.
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 and several hypothetical aetiological factors are postulated. 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. The problem is that it is detected late i.e. close to three years after the child’s birth. So it is considered a delayed presentation. Avoidance of eye gaze, lack of interest in the surroundings and being in his/her own world, not playing with peers, ritualistic behaviour such as rocking, hand movements, spinning and interest in rotatory objects such as fans and rolling the tyres of cars are a few of the many 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 or polisher.
Depending on the severity of the symptoms they can be catergorised as mild, moderate or severe and the outcome would depend on the severity.
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 behaviour and learning disability can be witnessed in some.
Q. Is it correct that teenage 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? Some studies have proved this. Do you agree?
A. This is an observation. Many studies are underway to address this concern. The hormonal theory could be the reason, however, no quality research publications have proved it so far.
Q. How common is this disease globally?
A. In 2020, the USA reported that approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to the 2016 data.
Q. How widespread is it in Sri Lanka? Has there been any recent study on the incidence?
A. At present the available data in Sri Lanka is only up to year 2000. No recent data is published yet . But the numbers seeking medical care shows that the incidence of autism is increasing and awareness among the public is soaring.
Q. Is Autism curable?
A. Autism is a neuro developmental disorder. It is not curable. But early intervention with therapy and guidance would help them to lead a normal life including 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 multidisciplinary team is needed to treat and diagnose autistic children. Who comprises this team?
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 will help to diagnose. Investigations such as MRI brain, EEG and blood tests would help to eliminate other causes and do not help diagnosing autism.
A Child Psychiatrist, Paediatrician or a Paediatric Neurologist would be needed to give a diagnosis of autism.
The Multi-disciplinary care by doctors, nurses, occupational therapists, speech and language pathologists, physiotherapists, psychologists, teachers who have been trained and social workers would help the child improve and each one of them will work on attaining certain short and long term goals for this child ensuring the participation of the child in society.
Q. What are the intervention methods used? Are they tailored to the specific needs of each child?
A. The term Joint Attention is very important. That is, the parent and the child have to engage in the same task without any interferences and it is integrated to the daily routine. The speech therapy, behaviour modification therapy, sensory integration activities are some of them that key stakeholders would work upon.
Q. Are parents involved in the process? What is their role?
A. The parents are the best therapists or doctor to their own child as they are the persons 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, etc) and interactive play with the child or read or write.
Q. What are the challenges that face those dealing with the care of autistic children?
A. Lack of literacy about autism in general. There is a lack of understanding the condition and directing to therapy. Most people caring for autistic children give up as there is no instant cure for the condition and also the caregivers are not given adequate recognition.
Q. Today we have an invasion of new technology and new methods on treating children with behavioural problems. I understand there was a conference held recently where such methods were highlighted in which you participated. Tell us about some of these new methods and approach to dealing with children with behavioural problems.
A. With the invention of new technology 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. Also there are many reliable sites on the web that give information to caregivers as well as clinicians.
The home based management is the mode of therapy in our country due to cultural and economic reasons and 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 have been successful in the recent past while usage of social media such as Face book, YouTube and Whatsapp have been a main source in disseminating knowledge.
Q. Do you think autistic children need to attend special schools? If so why?
A. Education for all and inclusive education for socialising in normal classrooms is the target by the Education Ministry. Those moderately affected who disturb the class with aggressive behaviour 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 doctors, psychologists and teachers will decide who need 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 this condition and delay bringing their child for medical examination. Myths regarding speech are very common and often the delay in speech is attributed to a family trait where someone in the family also started to talk late. The danger here is that it prevents 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 children with disabilities in the near future now that there is more focus on their plight?
A. I am being very optimistic as the Government has identified childhood disability as a key area that needs attention. So 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 carers?
A. This is a trying period for all of us and more so for children with autism. They face the risk that any other child would face if they don’t adhere to health regulations. The guidelines are such that if an autistic child gets the infection he/she needs to be kept with the reliable caregiver and caregivers need to be quarantined if 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 carers of children with autism?
A. Autism is not a disease; it’s a condition. The child has to live with it 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 the society.