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.
Features
The Division Bell Mystery
Tales of Mystery and Suspense 3
The murder, in a private dining room in the house, is of a financier with whom the government was negotiating a loan. When this seemed difficult the Minister of Home Affairs agreed to lead discussions, since he had known Mr Oissel the financier when they were young. Hence the private dinner, but when the Minister stepped out for a vote, Oissel was shot just as the Division Bell rang.
The Brahms and Simon detective novels, the first of which I wrote about last week, were amongst several books by the pair that Robert Scoble gave me when I was in Australia towards the end of last year. Amongst them was another thriller of a very different sort, though that too was written and set between the wars.
Called The Division Bell Mystery, it was set in the House of Commons, the first such book I believe, and was by Ellen Wilkinson, a Labour MP who became Minister of Education in Attlee’s government after the war, having served previously as Parliamentary Private Secretary to several ministers. Her hero Robert West is also a PPS, but a conservative, and his Minister, of Home Affairs, is an old style aristocrat, not much loved by the less orthodox Prime Minister, who nevertheless needs his support on many occasions.
The murder, in a private dining room in the house, is of a financier with whom the government was negotiating a loan. When this seemed difficult the Minister of Home Affairs agreed to lead discussions, since he had known Mr Oissel the financier when they were young. Hence the private dinner, but when the Minister stepped out for a vote, Oissel was shot just as the Division Bell rang.
West was just outside the door when the shot was heard, and when he opened it saw only the dead body with a revolver beside it. The assumption that this was suicide was however challenged by Oissel’s grand-daughter Annette, who was his heir, on the grounds that he would never have killed himself. But her view was given greater credence by the Inspector put in charge of the case who said there were no burn marks on the body which would have been the case had Oissel fired the pistol himself.
Matters are complicated by the fact that Oissel’s flat had been burgled while he was at dinner, and Jenks the policeman allocated to him, who had served the Home Secretary and seemed more acceptable to Oissel than someone from the Security Service, had been killed. Matters get even more complicated when Annette says her grand-father’s notebook in which he wrote his secrets in cipher was missing.
That was found in Jenks’ pocket, and then a photographer came to West to say he had been asked by Jenks to photograph this. More worryingly for West, he finds in the Home Secretary’s drawer a few pages from the notebook with what appears to be an interpretation of the cipher.
Overwhelmed by all this he confides in a recently created peer who knows all about the business world, who insists that they leave the house party at which they had met over dinner and discuss the matter with the Prime Minister who promptly summons the Home Secretary.
But the Home Secretary had gone to Scotland to launch a ship over the weekend, so the meeting could take place only on the morning of the Monday, when difficult questions were expected on the adjournment motion. He admits at the meeting that he had got Jenks to take the notebook, and also that he knew the code since it had been created by him and Oissel when they were young.
He thought he should resign, and even contemplated suicide, but the Prime Minister told him that that would be even worse for the government, and that he should go home to bed. The Prime Minister said that he himself would handle the question, which he did with aplomb, insisting that confidentiality was needed until the inquest. What had happened would be made clear then, he declared, leaving West and Inspector Blackit and Lord Dalbeattie what seemed the impossible task of solving the murder.
Dalbeattie had suggested that West ask a female Labour MP who was very fond of him to get what information she could from the staff. That there was some involvement there had become clear when West, going back late one night to collect a briefcase he had left in a dining room, found someone lurking in the dark in the corridor outside the private rooms. Room J, where the murder had happened, was meant to be guarded throughout by a policeman, but he had left the room having felt dizzy, and it seemed that his coffee had been drugged. West’s sudden appearance however had prevented anyone else getting into the room.
Dalbeattie decides to recreate the scene of the murder and has a dinner party in Room J on the Tuesday night, inviting West and Annette and the society hostess at whose house he had met, and also Patrick Kinnaird, an MP who was engaged to Annette, as well as the Permanent Secretary to the Home Ministry.
After coffee Inspector Blackit comes in with Grace, the Labour MP who had got the confidence of the staff, and a journalist who had also been helpful, and just as they say they think they are on the track the division bell rings. Grace jumps up and tells the Inspector that that provides the solution and they get a ladder, and sure enough find the revolver in the space where the bell is. Directed at the place where Oissel had sat, it had been primed to go off with the ringing of the bell. The waiter who had helped to set things up made clear who the murderer had been.
The reason for the murder and the confused motives of all those involved made for a fascinatingly intricate mix. But also impressive in the book were the descriptions of the isolation possible in the crowded premises of the house, the forceful characterization of the members – Grace based on the writer, the society hostess based on Nancy Astor, the first female MP – and the laid back nature of senior politicians which West realized had to change in the brave new world of high finance.
Features
The challenge of keeping value-based politics alive
The current outbreak of anti-immigrant protests in Durban, South Africa is bound to have taken many a subscriber to value-based politics or political idealism quite by surprise. After all, this is evidence that despite the historic accomplishments of nation-builders of the stature of the late President Nelson Mandela it cannot be taken for granted that identity politics, including racism in its worst forms, is no more in South Africa.
At the time of this writing details are scarce on the substantive root causes of the protests but it could very well be that economic grievances, particularly on the part of the majority community in South Africa, are contributing considerably to the disaffection. Shrinking employment and material prospects are likely to figure majorly among the factors igniting the unrest.
Fortunately, the local authorities in Durban are losing no time in calling for peaceful co-existence among the relevant communities and are pointing to the vital importance of stepping-up national integration processes. Apparently, immigrants in sizable numbers from neighbouring countries are present in Durban. However, international TV footage of the protests quoted some local authorities as saying that the majority of the immigrants in some centres that housed them were not illegal migrants and had the documents that entitle them to be in Durban.
In the Durban protests the world has fresh proof of the socially divisive consequences of the gathering globe-wide economic disaffection, touched off particularly by the continuing crisis in West Asia. Going ahead, the world would need to brace for increasing identity-based unrest of the kind it is just witnessing in South Africa.
Considering that the material lot of ordinary people everywhere could only aggravate progressively, with the US and Iran showing no signs of negotiating an end to their confrontation any time soon, it will be left to the more democratic and progressive sections of the world community to initiate positive measures collectively to bring a measure of relief to the discontented.
The swiftness with which such relief will be provided would depend crucially on the importance those sections taking up these undertakings attach to value-based politics as opposed to Realpolitik of power politics.
Going by these yardsticks, Italy could be considered to be moving in the right direction. Recently Italy came to the fore in initiating the collective named, ‘Rome Coalition for Food Security and Access to Fertilizer’, which has as one of its aims the swift provision of fertilizer to economically weak African countries.
In a recent statement Italian Minister of Foreign Affairs and International Cooperation, Antonio Tajani, said that a principal aim of the project was to ensure that the farmers of Africa gained easy access to fertilizer, considering that food security is a growing concern among some of Africa’s economically vulnerable countries.
The statement went on to mention that some 30 countries hailing from the Mediterranean region, the Middle East, the Balkans as well as the FAO had been invited to join the coalition. The venture is far-seeing in that food security is main among the reasons for social discontent which in turn could degenerate into endemic political turmoil and bloodshed. Separatist violence and geographical fragmentation of countries wouldn’t be too far behind these developments, as Africa itself has often proved.
It is hoped that more G7 countries would take the cue from Italy and do what they could to ease the hardships of economically distressed countries, particularly of the global South. In these efforts they would need to break rank with the US, which is today brutally indifferent to the consequences of its policy of making ‘America First’, come what may.
Going by current developments, the Trump administration seems to be blithely oblivious to the wider, deleterious effects of its policy course in West Asia. Besides rendering Iran militarily and otherwise impotent nothing else seems to matter to Washington, as regards West Asia. This is policy short-sightedness of an extreme kind. After all, right now West Asia could be said to be sitting on the proverbial powder keg.
On the other hand, Iran is not giving the world the impression that it is doing anything constructive to get out of the policy straitjacket that it wove for itself decades ago. Rather than enter into a policy of ‘live and let live’ in relation to Israel in particular and initiate a process of reconciliation with the latter, it has chosen to operate within policy parameters that continue to damn Israel. This has put Israel always on the ‘defensive’ so to speak and prevented the opening up of space for meaningful dialogue.
That said, Israel is obliged to explore the possibilities of entering into a negotiatory process with the Arab-Islamic world that could lead to a de-escalation of tensions and bloodshed. It cannot continue to look at its neighbours through lenses that distort them as archetypal enemies who should be ‘wiped off completely from the face of the earth.’
In other words, the need is urgent for Realpolitik to give way to value-based politicks. Italy is beginning to prove that the latter approach could be pursued with some success. May be the EU and the UK could throw their weight behind these initiatives as well and establish that international politics could be refashioned on the basis of humane, civilized norms. The UN would need to be fully supportive of these moves and prove an organizational nucleus of the operations that follow.
In fact the time is ripe for people of conscience to collectively stand up on the side of peace and say ‘No’ to war and violence. Organizations such as the ICRC, the WHO and Medicines Sans Frontiers have already taken up this call. Referring to the widespread destruction of health facilities and their dehumanizing results these organizations have said, among other things, that ‘This is not a failure of the law. It is a failure of political will.’
True, ‘failure of political will’ among those powers that matter accounts for the runaway, uncontrollable nature of war and destruction in contemporary times, but more fundamentally it is a failure of the human conscience. It could very well be that the phenomenal levels to which violence and war have been unleashed today have had the effect of deadening consciences. This is a matter for urgent study and wide discussion.
Features
Vesak celebrations … with Cuteefly
I would describe Indunil Kaushalya Dissanayaka as innovative and creative, and she operates under the name of Cuteefly.
Indunil always comes up with something novel to celebrate special occasions, and she does it with candles … and that’s her profession.
She was in the spotlight when she created a happening scene, with candles, for Christmas, Sinhala and Tamil New Year, and Valentine’s Day.
As lanterns light up Sri Lanka for Vesak, the Colombo-based candle maker is quietly turning wax and wick into little pieces of the festival.

Candles reflecting Vesak themes
Her candles reflect Vesak themes – light, peace, remembrance, giving, etc., to enable you to fill your Vesak celebration with devotion and beauty.
Among her Vesak creations is a lotus-shaped soy candle, scented with sandalwood, lavender, etc., meant to burn during this Vesak Poya Day.

Indunil Kaushalya Dissanayaka: Customers
praise her for her creativity
These handcrafted Vesak candles are perfect for offering at the temple, she says.
What makes her creations so novel is that they come in different shapes, scents, themes, and all are handmade.
What’s more, her customers have heaped praise on her for her creativity.
According to Indunil, her creations are perfect as a thoughtful gift … to bring beauty, unity, and light into every moment.
Says Indunil: “Our beautifully handcrafted Unity candles are designed with premium detail and love, making them perfect for celebrations, gifts, and meaningful occasions.”
Cuteefly, says Indunil, is available online.
Readers could contact Indunil on 0778506066 for more details.
He Facebook Page is: Cuteefly.

Handmade with love
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