By Dr. Dineshani Hettiarachchi Sirisena
Autism Spectrum Disorders (ASD), also known as ‘autism,’ is now recognised as a global condition affecting nearly 78 million people worldwide. Over time, the numbers have increased tremendously. Global statistics indicate that one in 44 children are being diagnosed with ASD.
Seeing this fast-growing disorder impacting the new generation of the country, the Lady Ridgeway Hospital, as Sri Lanka’s largest children’s hospital, decided to initiate a campaign to uplift the services provided for ASD. ‘ACCEPT 2022’ was an initiative from the Lady Ridgeway Hospital Steering Committee for Autism (LRHSCA) with the assistance of the Rotary Club of Colombo Reconnections (RCCR) to build awareness by forming an intersectoral collaboration between both State and private sector institutions. The vision of the project is to support children with ASD to be independent and be an asset to society by providing them with comprehensive care. In this light, we spoke to LRHSCA Convener Dr. Prasadhini de Silva.
Lady Ridgeway Hospital Director and LRHSCA Chair Dr. G. Wijesuriya welcomed the gathering and thanked and appreciated all individuals who have been serving the children with special needs and the RCCR for supporting the project throughout. He also highlighted the objectives of the event as an initiative to bring many experts holding responsible positions together to uplift the lives of the children with autism at many different stages of their lives. The bigger objective is to create public awareness, social inclusion, intersectoral collaboration, and opportunities sustainably. Concurrently a webpage for ‘ACCEPT 2022’ was also launched.
Understanding autism
LRHSCA Consultant Child and Adolescent Psychiatrist Dr. Swarna Wijetunga expressed her views on the health perspective of ASD, which is a complex, lifelong neurodevelopmental disorder. A research study conducted in 2009 highlighted the prevalence rate of ASD as one in every 93 children affected with autism. A child with ASD shows impairment in social interaction, delayed or limited language development, repetitive behavioural patterns, and rigid behaviours. Even though major aspects of functioning are affected, early diagnosis and treatment could bring a significant change in a child’s life to allow them to be fully functional. In contrast, if the child is left undiagnosed and untreated, autism could be a lifelong disorder.
ASD makes both the child and their families vulnerable in multiple ways, exposing them to many stressors. Due to lack of awareness, many children with ASD are subjected to bullying and stigmatisation. They may be left at home, hidden from the community, thus making them fully dependent on family members during their entire lifespan. Family members could be facing social stigma, financial difficulties, inability to attend employment, education and support for other siblings, distress over uncertainty and unavailability of services, stress, undue cost due to exploitation, and burden of increase in travelling expenditure. The majority do not receive support from or have access to adequate healthcare, education, and social care services, partly due to the lack of awareness. On top of it, the child with ASD should be under close supervision for they could become victims of sexual offenders.
One of the major solutions to this condition is transforming the children with ASD to be fully-functional, independent, and financially stable as adults. Multidisciplinary team interventions aim to build skills that are absent or diminished. Integrating these children into the school systems and supporting their continued education and skill development is one of the identified needs. Following this, the impacted children could be made independent and financially stable in their adulthood. Therefore, the intention of project ACCEPT ’22 was to invite both State and private institutions to work in unison to provide a comprehensive support service to the children with ASD, stated Dr. De Silva.
Lady Ridgeway Hospital for Children, Colombo offers services for children and families with autism including assessments, early interventions, and follow-up with the multidisciplinary team, stated LRHSCA Secretary Dr. Dulangi Dahanayaka.
Inclusive education
Opportunity for education is a right of every child that the Government is bound to provide. The United Nations promotes inclusive and equitable quality education and lifelong learning opportunities for all. “For example, if Yutaro Sun, who can say yes and no only by blinking an eye, can be a student of the Open University in Japan, why not children with autism?” stated Ministry of Education Assistant Director of Education – Non-formal and Special Education Branch Rashika Ella Wala.
Children with autism benefit through inclusive education customised according to their different abilities. Implementing the Ministry of Education Circular No. 37/2020, all three-year-old (by 31 January 2022) children with special needs are registered with the support of primary healthcare workers and targeted teacher and parent training is to be conducted. These children’s preschool enrollment is to be done when they are four, where they will be accommodated in regular classes. This practice will harness an inclusive environment which is the most effective means of combating discriminatory attitudes and creating welcoming communities. Moreover, this will improve efficiency and ultimately the cost-effectiveness of the entire education system.
Department of Social Services Deputy Director Nadeeka Dharmadasa stated that they would accommodate children with autism at their Child Guidance Centres, offering early intervention and counselling for parents.
Development of vocational skills
The Tertiary and Vocational Education Commission is the regulatory and the apex body in technical and vocational education in Sri Lanka. The Commission’s Director – Industrial Liaison Manjula Vidanapathirana explained the National Vocational Qualification (NVQ) system which is of Level 1-7 (7 – Degree Level), while expressing his willingness to work together, and stated the most appropriate pathway for obtaining NVQ for a child with autism would be the Flexible Learning Model (FLM) where qualifications are awarded for specific units; for example, in the bakery course, an unit qualification is given for baking a cake.
Provisions for employment and private sector participation
National Secretariat for Persons with Disabilities (NSPWD) Director Anuradha Herath stated that a 50% salary subsidy (up to Rs. 15,000) is provided for the recruitment of people with disabilities into private entities coordinated at Divisional Secretariat level. Self-employment assistance of Rs. 25,000 is provided to persons with disabilities.
Department of Manpower and Employment Director General Anusha Gokula Fernando emphasised the need for creating a co-working culture in our society and establishing a proper system. She identified the need for a disability database and further emphasised the need for proper networking and collaboration of all sectors. She asserted that whatever was planned should suit the receiver and be well received by the public and based on facts rather than sympathy. Her department provides capacity building and career guidance. Additionally, it facilitates the collection, analysis, and dissemination of information pertaining to the labour market.
Sharing his insights on autism, RCCR Immediate Past President Harold Sandrasagara stated that all the corporates should be brought under one umbrella for this worthy cause. Therefore, the Government, the corporate world, and other charitable organisations and volunteer groups can contribute by joining hands to uplift the affected families to fight autism, he noted.
The way forward
The series of presentations ended with a fruitful panel discussion, where all the representatives from the Government and private sector came together to decide on the way forward. Health Services Director General Dr. Asela Gunawardena together with Family Health Bureau Director Dr. Chithramalee de Silva and Dr. Asiri Hewamalage took the responsibility of appointing the Central Steering Committee for Autism in Sri Lanka.
Ministry of Education Secretary Prof. Kapila Perera mentioned that he was educated on autism thanks to the programme. Building awareness on autism/special needs is a necessity in order to have well-informed teachers and have the support of assistant teachers. He encouraged the introduction of a buddy system (obtaining the support of a bright student in the class), noting that people should be encouraged to pursue careers in disciplines relevant to autism.
Dr. G. Wijesuriya suggested utilising already available resources to the maximum. Deshamanya Dr. Rohantha Athukorala added the final touches to the panel discussion by highlighting the aspects related to the employment of individuals with ASD. Highlighting recent research from the Western arena, he informed that 56% of employees appeared to have some level of autism features and surprisingly outstanding people have some degree of autism. He went on to mention that this time at the National Export Awards an award had been given to a company that was employing people within this spectrum/those who were differently-abled. Dr. Athukorala was keen to take up a project with RCCR to initiate a campaign to introduce a mandate to employ 5% of employees with special needs or autism. The requirement is to have a set of skills. He insisted on conducting a pilot project enrolling 400-500 companies.
International Health Director Dr. Alan Ludowyke concluded the event on the note “what you can do I can’t do, what I can do you can’t do – but together we can do!”