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.
