Features
Some thoughts on children with autism
Dr B. J. C. Perera
MBBS(Cey), DCH(Cey), DCH(Eng), MD(Paed), MRCP(UK), FRCP(Edin), FRCP(Lon), FRCPCH(UK), FSLCPaed, FCCP, Hony FRCPCH(UK), Hony. FCGP(SL)
Specialist Consultant Paediatrician and Honorary Senior Fellow, Postgraduate Institute of Medicine, University of Colombo, Sri Lanka.
Joint Editor, Sri Lanka Journal of Child Health
The diagnosis of a condition called autism in a child has the potential to be a totally devastating event for the parents and family members. However, right at the outset, it is most important to point out that it is now called autism spectrum disorder (ASD). The reason for using this extended terminology is that there is a range of manifestations in it which could be from the mildest forms of it at one end, to the most severe types at the other. That is why it is now classed as a ‘spectrum’ where a given child with the problem could be professionally assessed and placed at a point in the range of the possible manifestations of the disorder. The crux of the matter is that it is vitally important to note that individuals with ASD can vary widely in their abilities, challenges, and support needs as well. Furthermore, some individuals may have additional co-occurring conditions such as intellectual or developmental disabilities, anxiety disorders, or attention-deficit/hyperactivity disorder (ADHD). The World Health Organisation (WHO), in a communique dated November 2023, reports the global incidence of autism spectrum disorder to be as much as one in a hundred children. The United Nations General Assembly has denoted the second of April of each year as World Autism Awareness Day.
Autism is a disorder of the development of the brain, characterized by a wide range of symptoms and challenges that affect social communication, behaviour, and sensory processing by the brain. They have problems with social interaction and communication difficulties, classically manifested by delay in speech development. They may have difficulties in understanding and using verbal and nonverbal communication cues such as gestures, facial expressions, and tone of voice. They may struggle with initiating and maintaining conversations, understanding social norms, and forming relationships with others. They have very low attention spans and to put it quite bluntly, as a result of all these drawbacks, these children seem to live in a world of their own.
Many children with ASD engage in repetitive behaviour and routines, such as hand-flapping, rocking, or repeating words or phrases. They may also have highly focused interests in specific topics, objects, or activities, especially toys with repetitive movements. They often experience heightened sensitivity or even reduced sensitivity to sensory stimuli such as light, sound, touch, taste, and smell. Some of them may have difficulty adapting to changes in routines or environments and may prefer sameness and predictability. They may also demonstrate rigid thinking patterns and have trouble understanding other perspectives or abstract concepts. Many individuals with ASD struggle with executive functioning skills such as planning, organization, problem-solving, and impulse control. This can impact their ability to complete tasks, manage time effectively, and navigate daily life independently. Most importantly, children with autism often find it challenging to understand social cues, navigate social situations, and form and maintain relationships with others. They may have difficulty interpreting others’ emotions and intentions, leading to social isolation or misunderstandings.
All these considerations are well and good. But here is something that is vitally important and would be a source of some solace to parents of children with ASD. Gone are the days that autism was looked at as a ‘lost cause’. Now the pendulum has completely swung back as we know for sure that so much can be done for children with this problem. It is crucial to suspect and make the diagnosis as early in the life of a baby as possible, simply because the sooner we start doing all the necessary things, so much better the ultimate results would be. There is incontrovertible research evidence that early interventions do go a long way in improving the results of proper scientific management. Early diagnosis, intervention, and support are crucial for helping individuals with ASD reach their full potential and lead fulfilling lives. Towards an early diagnosis, two features may help tremendously. One is speech delay, while the other is a lack of eye and social contact. These features when presented by the parents should never be dismissed out of hand, even by doctors.
Amongst many things that can be offered to children with ASD, an important and useful initiative that is very helpful in managing ASD is the Son-Rise Programme. It is an intensive, home-based therapy approach for children with autism spectrum disorder that was developed by Barry Neil Kaufman and Samahria Lyte Kaufman in the 1970s, inspired by their experiences with their son, Raun, who was diagnosed with severe autism at a young age. The programme gained significant attention after the release of the documentary film “Son-Rise: A Miracle of Love” which documented the Kaufmans’ journey with their son which led to the development of the programme. The entire initiative is based on the premise to show how much can be done for children with autism spectrum disorder.
The Son-Rise Programme is based on the belief that children with autism have the potential to overcome their limitations and develop meaningful social connections with others. The components of the initiative emphasise building a strong, accepting, and interactive relationship between the child and the caregivers, typically the parents. It is rooted in the principles of unconditional love, acceptance, and a non-judgmental attitude towards the child. The very basic but hallowed principle underlying this initiative is for us to join the child in his or her world, before we try to get the child to join our world.
Given below is an overview of the key components and principles of the Son-Rise Programme:-
Acceptance and Unconditional Love: The programme emphasises accepting the child exactly as he or she is, without trying to change or “fix” them. Caregivers are encouraged to love their child unconditionally and to realise that autism is a unique aspect of their personality.
Joining and Interactive Attention: Caregivers are taught to join the child in their world by engaging in activities that interest the child. This involves following the child’s lead, joining in their repetitive behaviour or interests, and using these as opportunities for connecting with the child.
Empathy and Understanding: The programme encourages caregivers to empathise with the child’s experience and perspective.
By understanding the motivations behind the child’s behaviour, caregivers can better connect with them and respond in a supportive manner.
Building Rapport and Connection: Caregivers are taught techniques for building rapport and connection with the child, such as mirroring their body language and vocal patterns, maintaining eye contact, and using enthusiastic and engaging communication styles.
Creating a Structured Environment: While the Son-Rise Programme emphasises flexibility and following the child’s lead, it also recognises the importance of structure and predictability for children with autism. Caregivers are encouraged to create a structured environment with clear routines and boundaries to help the child feel safe and secure.
Celebrating Every Success: The programme when implemented at home celebrates even the smallest successes and accomplishments of the child, thereby reinforcing positive behaviour and fostering a sense of confidence and self-esteem.
Continuous Learning and Growth: Caregivers are encouraged to continuously learn and grow alongside their child, seeking out resources, training, and support to enhance their understanding of autism and their ability to support their child’s development.
The entire enterprise needs to be facilitated and supervised by Paediatricians and psychologists working as a team. For the disorder per se, there are no magic silver bullets in the form of medicinal drugs although some associated features such as hyperactivity may warrant certain specific medications.
The Son-Rise Programme has garnered both praise and criticism within the autism community and among professionals. Supporters of the programme laud its emphasis on acceptance, love, and building meaningful connections with children with autism. They point to anecdotal evidence of significant improvements in social skills, communication, and overall quality of life for some children who have participated in the program. The internet is full of several success stories.
Critics, however, argue that the Son-Rise Programme lacks empirical evidence to support its effectiveness and may promote unrealistic expectations for “recovery” from autism. Some professionals have raised concerns about the programme’s focus on intensive parent involvement and its departure from more evidence-based interventions, such as Applied Behaviour Analysis (ABA).
Of course, one must not run away with the notion that the Son-Rise Programme is a panacea for all ills in the Autism Spectrum Disorder. It may not work all that well in certain children with ASD and expert help would be required in such cases. However, it must be reiterated that the Son-Rise Programme does offer a unique and holistic approach to supporting children with autism and their families. It is centred around the principles of acceptance, love, and connection. It can be a huge boon for parents who could be at their wit’s end to look after a child with ASD. While it has inspired many families and caregivers and shown promising results for some individuals, it remains a subject of debate and further research within the autism community. What we need to desperately believe is that these children are not born in a broken state of mind but are assembled a little bit differently in their higher mental functions. Some of them can and do grow up to be useful citizens of a given nation.
by Dr Gotabhya Ranasinghe
Senior Consultant Cardiologist
National Hospital Sri Lanka
When we sought a meeting with Hon Dr. Ramesh Pathirana, Minister of Health, he graciously cleared his busy schedule to accommodate us. Renowned for his attentive listening and deep understanding, Minister Pathirana is dedicated to advancing the health sector. His openness and transparency exemplify the qualities of an exemplary politician and minister.
Dr. Palitha Mahipala, the current Health Secretary, demonstrates both commendable enthusiasm and unwavering support. This combination of attributes makes him a highly compatible colleague for the esteemed Minister of Health.
Our discussion centered on a project that has been in the works for the past 30 years, one that no other minister had managed to advance.
Minister Pathirana, however, recognized the project’s significance and its potential to revolutionize care for heart patients.
The project involves the construction of a state-of-the-art facility at the premises of the National Hospital Colombo. The project’s location within the premises of the National Hospital underscores its importance and relevance to the healthcare infrastructure of the nation.
This facility will include a cardiology building and a tertiary care center, equipped with the latest technology to handle and treat all types of heart-related conditions and surgeries.
Securing funding was a major milestone for this initiative. Minister Pathirana successfully obtained approval for a $40 billion loan from the Asian Development Bank. With the funding in place, the foundation stone is scheduled to be laid in September this year, and construction will begin in January 2025.
This project guarantees a consistent and uninterrupted supply of stents and related medications for heart patients. As a result, patients will have timely access to essential medical supplies during their treatment and recovery. By securing these critical resources, the project aims to enhance patient outcomes, minimize treatment delays, and maintain the highest standards of cardiac care.
Upon its fruition, this monumental building will serve as a beacon of hope and healing, symbolizing the unwavering dedication to improving patient outcomes and fostering a healthier society.We anticipate a future marked by significant progress and positive outcomes in Sri Lanka’s cardiovascular treatment landscape within the foreseeable timeframe.
by Fr. Emmanuel Fernando, OMI
Jesuit Fr. Aloysius Pieris (affectionately called Fr. Aloy) celebrated his 90th birthday on April 9, 2024 and I, as the editor of our Oblate Journal, THE MISSIONARY OBLATE had gone to press by that time. Immediately I decided to publish an article, appreciating the untiring selfless services he continues to offer for inter-Faith dialogue, the renewal of the Catholic Church, his concern for the poor and the suffering Sri Lankan masses and to me, the present writer.
It was in 1988, when I was appointed Director of the Oblate Scholastics at Ampitiya by the then Oblate Provincial Fr. Anselm Silva, that I came to know Fr. Aloy more closely. Knowing well his expertise in matters spiritual, theological, Indological and pastoral, and with the collaborative spirit of my companion-formators, our Oblate Scholastics were sent to Tulana, the Research and Encounter Centre, Kelaniya, of which he is the Founder-Director, for ‘exposure-programmes’ on matters spiritual, biblical, theological and pastoral. Some of these dimensions according to my view and that of my companion-formators, were not available at the National Seminary, Ampitiya.
Ever since that time, our Oblate formators/ accompaniers at the Oblate Scholasticate, Ampitiya , have continued to send our Oblate Scholastics to Tulana Centre for deepening their insights and convictions regarding matters needed to serve the people in today’s context. Fr. Aloy also had tried very enthusiastically with the Oblate team headed by Frs. Oswald Firth and Clement Waidyasekara to begin a Theologate, directed by the Religious Congregations in Sri Lanka, for the contextual formation/ accompaniment of their members. It should very well be a desired goal of the Leaders / Provincials of the Religious Congregations.
Besides being a formator/accompanier at the Oblate Scholasticate, I was entrusted also with the task of editing and publishing our Oblate journal, ‘The Missionary Oblate’. To maintain the quality of the journal I continue to depend on Fr. Aloy for his thought-provoking and stimulating articles on Biblical Spirituality, Biblical Theology and Ecclesiology. I am very grateful to him for his generous assistance. Of late, his writings on renewal of the Church, initiated by Pope St. John XX111 and continued by Pope Francis through the Synodal path, published in our Oblate journal, enable our readers to focus their attention also on the needed renewal in the Catholic Church in Sri Lanka. Fr. Aloy appreciated very much the Synodal path adopted by the Jesuit Pope Francis for the renewal of the Church, rooted very much on prayerful discernment. In my Religious and presbyteral life, Fr.Aloy continues to be my spiritual animator / guide and ongoing formator / acccompanier.
Fr. Aloysius Pieris, BA Hons (Lond), LPh (SHC, India), STL (PFT, Naples), PhD (SLU/VC), ThD (Tilburg), D.Ltt (KU), has been one of the eminent Asian theologians well recognized internationally and one who has lectured and held visiting chairs in many universities both in the West and in the East. Many members of Religious Congregations from Asian countries have benefited from his lectures and guidance in the East Asian Pastoral Institute (EAPI) in Manila, Philippines. He had been a Theologian consulted by the Federation of Asian Bishops’ Conferences for many years. During his professorship at the Gregorian University in Rome, he was called to be a member of a special group of advisers on other religions consulted by Pope Paul VI.
Fr. Aloy is the author of more than 30 books and well over 500 Research Papers. Some of his books and articles have been translated and published in several countries. Among those books, one can find the following: 1) The Genesis of an Asian Theology of Liberation (An Autobiographical Excursus on the Art of Theologising in Asia, 2) An Asian Theology of Liberation, 3) Providential Timeliness of Vatican 11 (a long-overdue halt to a scandalous millennium, 4) Give Vatican 11 a chance, 5) Leadership in the Church, 6) Relishing our faith in working for justice (Themes for study and discussion), 7) A Message meant mainly, not exclusively for Jesuits (Background information necessary for helping Francis renew the Church), 8) Lent in Lanka (Reflections and Resolutions, 9) Love meets wisdom (A Christian Experience of Buddhism, 10) Fire and Water 11) God’s Reign for God’s poor, 12) Our Unhiddden Agenda (How we Jesuits work, pray and form our men). He is also the Editor of two journals, Vagdevi, Journal of Religious Reflection and Dialogue, New Series.
Fr. Aloy has a BA in Pali and Sanskrit from the University of London and a Ph.D in Buddhist Philosophy from the University of Sri Lankan, Vidyodaya Campus. On Nov. 23, 2019, he was awarded the prestigious honorary Doctorate of Literature (D.Litt) by the Chancellor of the University of Kelaniya, the Most Venerable Welamitiyawe Dharmakirthi Sri Kusala Dhamma Thera.
Fr. Aloy continues to be a promoter of Gospel values and virtues. Justice as a constitutive dimension of love and social concern for the downtrodden masses are very much noted in his life and work. He had very much appreciated the commitment of the late Fr. Joseph (Joe) Fernando, the National Director of the Social and Economic Centre (SEDEC) for the poor.
In Sri Lanka, a few religious Congregations – the Good Shepherd Sisters, the Christian Brothers, the Marist Brothers and the Oblates – have invited him to animate their members especially during their Provincial Congresses, Chapters and International Conferences. The mainline Christian Churches also have sought his advice and followed his seminars. I, for one, regret very much, that the Sri Lankan authorities of the Catholic Church –today’s Hierarchy—- have not sought Fr.
Aloy’s expertise for the renewal of the Catholic Church in Sri Lanka and thus have not benefited from the immense store of wisdom and insight that he can offer to our local Church while the Sri Lankan bishops who governed the Catholic church in the immediate aftermath of the Second Vatican Council (Edmund Fernando OMI, Anthony de Saram, Leo Nanayakkara OSB, Frank Marcus Fernando, Paul Perera,) visited him and consulted him on many matters. Among the Tamil Bishops, Bishop Rayappu Joseph was keeping close contact with him and Bishop J. Deogupillai hosted him and his team visiting him after the horrible Black July massacre of Tamils.
Sri Lanka-Singapore Free Trade Agreement
By Gomi Senadhira
senadhiragomi@gmail.com
“You might tell fairy tales, but the progress of a country cannot be achieved through such narratives. A country cannot be developed by making false promises. The country moved backward because of the electoral promises made by political parties throughout time. We have witnessed that the ultimate result of this is the country becoming bankrupt. Unfortunately, many segments of the population have not come to realize this yet.” – President Ranil Wickremesinghe, 2024 Budget speech
Any Sri Lankan would agree with the above words of President Wickremesinghe on the false promises our politicians and officials make and the fairy tales they narrate which bankrupted this country. So, to understand this, let’s look at one such fairy tale with lots of false promises; Ranil Wickremesinghe’s greatest achievement in the area of international trade and investment promotion during the Yahapalana period, Sri Lanka-Singapore Free Trade Agreement (SLSFTA).
It is appropriate and timely to do it now as Finance Minister Wickremesinghe has just presented to parliament a bill on the National Policy on Economic Transformation which includes the establishment of an Office for International Trade and the Sri Lanka Institute of Economics and International Trade.
Was SLSFTA a “Cleverly negotiated Free Trade Agreement” as stated by the (former) Minister of Development Strategies and International Trade Malik Samarawickrama during the Parliamentary Debate on the SLSFTA in July 2018, or a colossal blunder covered up with lies, false promises, and fairy tales? After SLSFTA was signed there were a number of fairy tales published on this agreement by the Ministry of Development Strategies and International, Institute of Policy Studies, and others.
However, for this article, I would like to limit my comments to the speech by Minister Samarawickrama during the Parliamentary Debate, and the two most important areas in the agreement which were covered up with lies, fairy tales, and false promises, namely: revenue loss for Sri Lanka and Investment from Singapore. On the other important area, “Waste products dumping” I do not want to comment here as I have written extensively on the issue.
1. The revenue loss
During the Parliamentary Debate in July 2018, Minister Samarawickrama stated “…. let me reiterate that this FTA with Singapore has been very cleverly negotiated by us…. The liberalisation programme under this FTA has been carefully designed to have the least impact on domestic industry and revenue collection. We have included all revenue sensitive items in the negative list of items which will not be subject to removal of tariff. Therefore, 97.8% revenue from Customs duty is protected. Our tariff liberalisation will take place over a period of 12-15 years! In fact, the revenue earned through tariffs on goods imported from Singapore last year was Rs. 35 billion.
The revenue loss for over the next 15 years due to the FTA is only Rs. 733 million– which when annualised, on average, is just Rs. 51 million. That is just 0.14% per year! So anyone who claims the Singapore FTA causes revenue loss to the Government cannot do basic arithmetic! Mr. Speaker, in conclusion, I call on my fellow members of this House – don’t mislead the public with baseless criticism that is not grounded in facts. Don’t look at petty politics and use these issues for your own political survival.”
I was surprised to read the minister’s speech because an article published in January 2018 in “The Straits Times“, based on information released by the Singaporean Negotiators stated, “…. With the FTA, tariff savings for Singapore exports are estimated to hit $10 million annually“.
As the annual tariff savings (that is the revenue loss for Sri Lanka) calculated by the Singaporean Negotiators, Singaporean $ 10 million (Sri Lankan rupees 1,200 million in 2018) was way above the rupees’ 733 million revenue loss for 15 years estimated by the Sri Lankan negotiators, it was clear to any observer that one of the parties to the agreement had not done the basic arithmetic!
Six years later, according to a report published by “The Morning” newspaper, speaking at the Committee on Public Finance (COPF) on 7th May 2024, Mr Samarawickrama’s chief trade negotiator K.J. Weerasinghehad had admitted “…. that forecasted revenue loss for the Government of Sri Lanka through the Singapore FTA is Rs. 450 million in 2023 and Rs. 1.3 billion in 2024.”
If these numbers are correct, as tariff liberalisation under the SLSFTA has just started, we will pass Rs 2 billion very soon. Then, the question is how Sri Lanka’s trade negotiators made such a colossal blunder. Didn’t they do their basic arithmetic? If they didn’t know how to do basic arithmetic they should have at least done their basic readings. For example, the headline of the article published in The Straits Times in January 2018 was “Singapore, Sri Lanka sign FTA, annual savings of $10m expected”.
Anyway, as Sri Lanka’s chief negotiator reiterated at the COPF meeting that “…. since 99% of the tariffs in Singapore have zero rates of duty, Sri Lanka has agreed on 80% tariff liberalisation over a period of 15 years while expecting Singapore investments to address the imbalance in trade,” let’s turn towards investment.
Investment from Singapore
In July 2018, speaking during the Parliamentary Debate on the FTA this is what Minister Malik Samarawickrama stated on investment from Singapore, “Already, thanks to this FTA, in just the past two-and-a-half months since the agreement came into effect we have received a proposal from Singapore for investment amounting to $ 14.8 billion in an oil refinery for export of petroleum products. In addition, we have proposals for a steel manufacturing plant for exports ($ 1 billion investment), flour milling plant ($ 50 million), sugar refinery ($ 200 million). This adds up to more than $ 16.05 billion in the pipeline on these projects alone.
And all of these projects will create thousands of more jobs for our people. In principle approval has already been granted by the BOI and the investors are awaiting the release of land the environmental approvals to commence the project.
I request the Opposition and those with vested interests to change their narrow-minded thinking and join us to develop our country. We must always look at what is best for the whole community, not just the few who may oppose. We owe it to our people to courageously take decisions that will change their lives for the better.”
According to the media report I quoted earlier, speaking at the Committee on Public Finance (COPF) Chief Negotiator Weerasinghe has admitted that Sri Lanka was not happy with overall Singapore investments that have come in the past few years in return for the trade liberalisation under the Singapore-Sri Lanka Free Trade Agreement. He has added that between 2021 and 2023 the total investment from Singapore had been around $162 million!
What happened to those projects worth $16 billion negotiated, thanks to the SLSFTA, in just the two-and-a-half months after the agreement came into effect and approved by the BOI? I do not know about the steel manufacturing plant for exports ($ 1 billion investment), flour milling plant ($ 50 million) and sugar refinery ($ 200 million).
However, story of the multibillion-dollar investment in the Petroleum Refinery unfolded in a manner that would qualify it as the best fairy tale with false promises presented by our politicians and the officials, prior to 2019 elections.
Though many Sri Lankans got to know, through the media which repeatedly highlighted a plethora of issues surrounding the project and the questionable credentials of the Singaporean investor, the construction work on the Mirrijiwela Oil Refinery along with the cement factory began on the24th of March 2019 with a bang and Minister Ranil Wickremesinghe and his ministers along with the foreign and local dignitaries laid the foundation stones.
That was few months before the 2019 Presidential elections. Inaugurating the construction work Prime Minister Ranil Wickremesinghe said the projects will create thousands of job opportunities in the area and surrounding districts.
The oil refinery, which was to be built over 200 acres of land, with the capacity to refine 200,000 barrels of crude oil per day, was to generate US$7 billion of exports and create 1,500 direct and 3,000 indirect jobs. The construction of the refinery was to be completed in 44 months. Four years later, in August 2023 the Cabinet of Ministers approved the proposal presented by President Ranil Wickremesinghe to cancel the agreement with the investors of the refinery as the project has not been implemented! Can they explain to the country how much money was wasted to produce that fairy tale?
It is obvious that the President, ministers, and officials had made huge blunders and had deliberately misled the public and the parliament on the revenue loss and potential investment from SLSFTA with fairy tales and false promises.
As the president himself said, a country cannot be developed by making false promises or with fairy tales and these false promises and fairy tales had bankrupted the country. “Unfortunately, many segments of the population have not come to realize this yet”.
(The writer, a specialist and an activist on trade and development issues . )
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