‘No Matter What’ – a striking title and an intriguing book cover – but as I clutched the book what I sought were answers to the many questions that worried me since my son had been diagnosed as autistic. Hours on the internet left me dissatisfied and I hoped this book written by a Sri Lankan parent, even one whose experiences were overseas, would help resolve the many issues that buzzed in my head. And indeed it did just that and more.
It was full of commonsense logic that was appealing; information that was packaged in parent sized doses rather than the long complicated jargon filled essays or short, personalized blog entries that crowded the internet; and most of all it was optimistic – no matter what, the child could be ensured a happy childhood; the parents could gain contentment by doing their best to ensure their child’s development and the family could evolve much like any other family while facing the challenges of autism.
What is autism? It’s a very hard question to answer made harder by the fact that it is generally referred to as ASD – Autism Spectrum Disorder where the spectrum involves variations in intelligence, verbalization, sensory perception, levels of activity, and even physical health problems. At its simplest, think of a little boy of three and a half who has no speech impediment, whose mind is whirring with thoughts as reflected by his actions and has perfect hearing and yet does not talk, not even to request his favourite drink - that to me is autism in a nutshell. Sandy’s book is useful in highlighting the many variations and symptoms that may complicate dealing with such children. The glossary in particular is useful in un-entangling the jargon and abbreviations that abound in accounts of autism.
The writer’s insightful comments are likely to ring bells for readers like myself, as in the story of Steven’s calculated actions to get at the curtains put out of his reach in the Consultant’s Office. Sharing her feelings in phrases like “shock of diagnosis”, “accept your feelings and come to terms with the diagnosis”, “each step forward is a milestone” “achieving the child’s true potential” and particularly her suggestion of a new label “autism defeated” succeeds in achieving her desire, that her book be a guide and help to other parents. Likewise her advice to parents to avoid isolation, to face up to their own emotional downswings, to realize that spouses and family members cope with the diagnosis differently and to pace themselves out for the long struggle yet maintain a positive outlook are all useful. Many parents of autistic children, particularly those just confronting the diagnosis, could gain much information and benefit from the positive approach taken by Sandy Howarth.
Sandy’s book about Steven now aged 15 is most important to us in Sri Lanka because as parents the children we meet with autism are all relatively young. Possibly this is because of improved diagnosis facilities, like that offered at the Lady Ridgeway Hospital under Prof. Hemamali Perera and due to more media coverage than before. The question that haunts many of us is what will our children be like as they grow older? The picture Sandy offers is so reassuring: particularly the fact that Steven is such a loving brother to Raina who is five years younger than him and has normal development. His interactions with the family too are that of any loving child though one whose complexities of communication make it harder for him to conform to general expectations.
Sandy’s attitude to discipline also interested me: Steven’s rebellion re. wearing a coat and Sandy’s response was a useful example in providing insights into the role of discipline in day to day life. For here is another dilemma faced by parents of autistic children who waver between the constant pressure to get their children to conform to society’s expectations and the feeling that it is unfair to foist a life style we perceive to be normal on those who are happy in their own worlds.
What can we expect from society for autistic children in Sri Lanka today? The major concern many of us face is what happens when these kids need to go to school. Many of us have found good nursery schools where our children are learning alongside ‘normal developers’ – the ideal for autistic education. However the picture with regard to schooling is far from rosy. Few schools are willing to enroll even bright kids with high IQ but low verbal skills, and most of these are private or international schools.
Special education units exist in some government schools but very few, and the services provided in such special units are not often ideal for autistic children. Sadly Sandy’s experiences of the British educational system are far from rosy and the book ends with Sandy’s determination to home tutor Steven again. Finding the right type of education to suit such a child seems as complex and dicey in a developed country as it is here – unfortunately the grass does not seem any greener for autistic kids in developed nations, a point that struck home in a society where the general advice of friends post diagnosis tends to be migration.
No matter what, parents will strive to do their best for their children but greater state help through the setting up of the right sort of educational opportunities for such children would go a long way in reducing the anxieties of parents. Greater emphasis and resources for the training of speech therapists and occupational therapists, opportunities for their development and the development of such professions is crucial since it will ensure a greater pool of resources to strengthen the skills of the large number of autistic children in the country today. While exact numbers are not known, the numbers of kids diagnosed as in the autism spectrum is rising rapidly in Sri Lanka.
Society too needs to understand what it is to be autistic, what challenges are faced by autistic individuals and what role they can play in the lives of such individuals. Books like ‘No Matter What’ can play a major role in creating such awareness, and it is positive too in encouraging many people within and outside the family circle to get involved in the lives of autistic children. Autism stems from lack of awareness: of themselves and others in those who are afflicted; and yet greater awareness on the part of those around is what can help such children and adults to achieve as Sandy puts it “their true potential”.
This book can be ordered through any book shop
on ISBN 9781847477491