World Autism Awareness Day (WAAD) will be observed on April 2 across the world. WAAD is one of four special awareness days in the UN calendar.
Yet it is also a condition that has seen an upward spiralling in recent years and due to lack of awareness and ignorance among parents and carers of persons with autism in some areas of the country, it has led to unnecessary delays in early intervention strategies being introduced to ensure optimal quality care for persons with autism which is also their right.
The Sunday Observer spoke to Prof. in Paediatric Neurology and Honorary Consultant Paediatric Neurologist, University of Sri Jayewardenepura/Teaching Hospital Colombo South, Dr. Saraji Wijesekara who was also the former President of the Sri Lanka Association for Child Development( SLACD) for more insights into what Autism is, how it can be managed and controlled, facilities for accessing available resources and where such resource could be obtained free to all persons especially the underprivileged who form the bulk of Sri Lanka’s population.
Excerpts:
Q: World Autism Awareness Day (WAAD) is observed every year on April 2. As this is a subject that not many readers are familiar with what is Autism?
Dr. Saraji Wijesekara
A. Autism is a spectrum of symptoms and signs observed in individuals. It is not a disease but a condition. Individuals identified as autism have poor social interactions and repetitive behaviors and or actions. There is a variation of presentation in autism which is why it has a wide spectrum.
Q: What are the main causes that drive this condition?
A. The usual belief is that there is a genetic tendency for the condition. However, the conducive environment too can sometimes trigger symptoms and signs in children. Some syndromes like Fragile X syndrome and Down syndrome would have a higher chance of being in the spectrum.
Q: Autism Awareness Day is one of only four special awareness days in the UN calender. Why is there such a urgent need to raise awareness on autism amid other urgent health problems in the world?
A. Autism is a condition that has a higher prevalence in the world. The numbers are on the rise each year and as these individuals lack the ability to social communication, they may be targets for breach of fundamental rights in them. So, setting apart a special day to raise awareness is very important in order to affirm and promote the full realisation of all human rights and fundamental freedoms for autistic people on an equal basis with others.
Q: How does Sri Lanka compare with other countries in the region in the number of autistic cases ?
A. The numbers are on par with the developed countries in the world. In 2007 the number is 1/93 and has gone up to about 1/60 in 2023 (unofficial results.)
Q: Who are those most at risk of developing Autism?
A. Mostly children of affluent families, nuclear families, children of professionals are at high risk considering the environment where the children are with screen addiction and living in a virtual world. Also living in apartments without peer relationships have worsened the situation. Recent Covid-19 outbreak has markedly influenced the worsening of the situation.
Q: Age-wise and genderwise, are more females or males liable to develop autism.If so why?
A. Both sexes are affected almost equally while some studies showing slight male preponderance. The changes of behaviour is noted from as young as infancy and may even detect later as preschool or school age in some children. There are individuals with autism who are adults and may have had difficulties with communication and engagement from young age.
Q: Are there different types of Autism?
A. Yes, Some of the individuals with autism lack eye contact and speech. But some may be over talkative and friendly and may have grandiose ideas
Q: Are there different degrees of Autism – For example from mild to moderate to severe? If so what are the symptoms to look out for in each of them?
A. Autism typically is a spectrum as I mentioned earlier. Therefore there are high functioning autism especially seen in very intelligent and persons such as those working in the capacity of professionals but with less social interactions. The other extreme is low functioning autism where they need help with daily chores. The rest have some difficulties, but manage with behavioural issues and having problems in home, school and workplace.
Q: Can a baby be born with ASD?
A. Yes as it has genetic implications they are born with autism.
Q: What are the symptoms to lookout for in a new born baby and in an infant?
A. A newborn baby to 2-3 month older would throw out extreme temper tantrums, may not respond or following the carer. No back and forth gestures and not interested in the surrounding are some of the red flags in infancy.
Q: Do they vary as the child grows from toddler to pre schooler?
A. The speech delay, tip toe walking, unintelligible speech and poor eye contact with refusal to touch and withdrawal from other senses are some of the many symptoms that a toddler may present with.
As a toddler their play activities are limited and poor interaction with peers and carers, still lacking eye contact and not interested in the surrounding are major findings. They may be in a world of their own and would not listen to the teacher and comply with the commands
Q: Is Autism curable?
A. Autism is not curable, but with appropriate therapy it can be managed effectively to lead a near normal life in the society
Q: Is it manageable to enable better outcomes?
A. Yes, of course.
Q: If parents delay in getting a child diagnosed and treated early what will be the adverse oonsequences on the child’?
A. Autism is a neuro-developmental disorder in childhood. The neurons make rapid connections during the first 36 months of life and out of which within the first 2 years they form even more rapidly. If a child with autism is diagnosed or suspected at very early age the interventions directed to form the connections of the brain can be stimulated effectively and the best outcome could be predicted. If there is a delay obviously the speed of developing neural connections are poor and even the intervention is delivered at the same intensity the outcome may not be optimum.
Q: If a child is brought with symptoms of autism who can diagnose him/her? The GP? Mid wife? Or a specially trained neuro physician?
A. Autism is diagnosed clinically. No costly investigations are necessary. There are certain questionnaires that the parents may have to fill in and face few interviews by the clinician with the child. A GP, midwife, teacher or any other health professional could suspect with the clinical symptoms. However the diagnosis is to be made by a specialist doctor who is trained in assessing children with autism.
Q: Does this procedure involve hospital settings?
A. Not necessarily. These assessments could be done in the community.
Q: Treatment wise how do you treat autistic patients? Is there a blanket treatment for all or is it custom tailored to suit each patients depending on he degree of autisms and his present health status? Walk us through the normal procedure from the moment the patient is brought in.
A. Autism is a condition. Treatment of autism per se does not involve medicines. However, some associated conditions like epilepsy, attention deficit hyperactivity, depression or any other psychiatric disorder may warrant treatment
Q: Will healthy lifestyles and nutritious food help autistic persons?
A. As in any other normal person healthy lifestyles and nutritious food would have a positive impact on the life of these individuals. These life styles may help reduce undue stress in worried families.
Q: Do the parents have a role to play in this process of rehabilitation since they know the child better than outsiders?
A. Yes of course. Autism management in Sri Lanka is family centered. Therefore the parents or the caregivers have a major role to play in the management. The therapists would guide them and the therapies to be conducted at home and inculcate them to the daily routines should be by the parents.
Q: Role of teachers ?
A. Teachers too have a major role in managing these children in school. Specially identifying the strengths and weaknesses and adopt accordingly. They need to encourage these children to socialise with other children in class and to facilitate opportunities for them
Q: Do you recommend special schools for autistic children or home schooling?
A. Not at all. However, in rare circumstances children with autism with vary severe behavioural disorders may need to be home schooled. This group is very minimal.
Q: Many autistic adults suffer from various mental problem and socio economic problems due to wrong ideas and myths about this condition. What are the most common of these myths you have encountered in your field of work as a neuro-Consultant physician and former President of the Sri Lanka Association for Child development and member of the Sri Lanka College of Paediatricians?
A. These adults have poor social interactions and they have no friends or no connections with the peers. They live in a world of their own and have very strict routines. Hence they have difficulties in settling in with the rest of their colleagues.
Others feel that they are ‘different’, alien’ or ‘monsters’ and they are unable to do any productive work. They disrupt work in others if they are in school or workplace and are their presence is thus a disadvantage to those in the same classroom or workplace.
Q: Myths about Autism in Sri Lanka. What are they?
A. That autism is a curse and incurable and there was no need to take a child born with autism symptoms for early testing thus leading to delays that could have adverse impact on the child’s wellbeing and development.
Q: How would you like to debunk them?
A. Most of individuals with autism are very focused. They have limited vocabulary nor they talk much. Hence they have a target and work towards it . They are not interested for gossiping and fighting for their rights. So no trade unions.
Q: The theme for this year is “ Transformation towards a Neuro – inclusive World for All”. What is the significance of this theme for autistic persons both globally and in Sri Lanka?
A. The theme denotes that every individual with any neurological condition irrespective of their differences is welcome in the face of neurological disorder or disability. They share equal rights and equal opportunities in the society.
Q: There is also a sub theme of Colours. What is its relevance ?
A. Colours indicate vibrant stereotypies and restrictions in individuals with autism.
Q: What are the gaps in delivering optimal care for all autistic persons everywhere in our own health system?
A. Firstly the suspicion or diagnosis of autism is delayed. Once the diagnosis is made there is reluctance to accept of the diagnosis. There is dearth of therapists and expertise for management. The improvements after stimulation would take many months to years and it is an ongoing problem, hence most parents give up. There is lack of quality education and employment for these individuals.
Q: How would you like to close them?
A. A national care pathway for diagnosis, treatment and follow-up needs to be implemented to serve the country with equitable resources. Support from the local government and international relationships in order to keep up with the up-to-date therapy would be useful.
Q: What has the SLACD and Paediatric Association in Sri Lanka done so far to raise more awareness on Autism in the past few years?
A. Over the past decade or so workshops targeting parents, teachers, health care workers and doctors have been organised.
Multimedia have been involved to educate the general public. Public walks with banners and posters and hand bills to the public in all four corners of the island. Display of common symptoms in public places like clinics,hospitals and schools. Lighting up of buildings of historical interest on dedicated Autism awareness days and hotline to answer and direct people who have concerns on autism.
Q: What are the Do’s and Don’ts about autism?
A. Autism is not a disease. Hence do not consider these individuals as patients.
Q: Finally have you a message to share autistic persons and their parents?
A. Autism is not curable but early intervention strategies would improve the behaviours and life styles, thereby promising them a better outlook in future.
