Steeped in myths and prejudices, misunderstood for certain diseases similar to it, even the definition of Autism has challenged the medical world. Specialists in the field describe Autism as a neurological and developmental disorder condition starting in early childhood and lasting throughout life. They have pointed out however, that the exact causes are unknown although studies point to likely trigger factors. In western countries like the US and UK where in depth studies have been done, the number of autistic persons are said to be higher than acceptable levels with new cases being found every year. The US Centers for Disease Control has noted that there was a tenfold increase in autistic children over the past forty years. Though no national data is available on the exact number of autistic persons in Sri Lanka as only limited studies have been carried out by a few private non governmental organizations, currently available figures seem to point to the fact that the number of autistic persons in South East Asia, including Sri Lanka, have grown over the past two decades. The main challenges that face paediatricians, psychiatrists, psychologists, speech therapists, nurses and occupational therapists who are among the large team of persons involved in caring for autistic children, is the reluctance of parents and guardians to get their child tested by a qualified physician if he/she shows signs of a personality disorder.
“Each autistic child is unique and interventions and therapy are custom tailored for his/her specific disorder. If these interventions are initiated early in life when the child is very young, we can promise the parents that their child will have a better quality of life and be able to live a near normal life”, says Chartered Physiotherapist Dr Gopi Kitnasamy who is the Director of a Centre for children with Cerebral Palsy and other developmental disorders. They have started a special unit for autistic children at their Centre which has a multi-disciplinary team providing services to these children.
Excerpts
Q. Autism is a subject that not many people understand. How would you describe Autism?
A. Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as by unique strengths and differences. It is a neurological and developmental disorder that begins early in childhood and lasts throughout a person’s life.
Q. What are its causes? Is it a single cause or a combination of factors?
A. The exact cause of autism is still being investigated. Research suggests that a combination of factors - genetic and environmental - may account for differences in development. Autism is not caused by a person’s upbringing, or their social circumstances and is not the fault of the individual with the condition.
Q. Are there different types of autism?
A. Autism is a spectrum condition. The term ‘spectrum’ reflects the wide variation in challenges and strengths possessed by each person with autism. There are four main sub-types of autism Autistic Disorder, also known as autism Asperger Syndrome, also known as Asperger’s disorder or simply Asperger’s; Childhood Disintegrative Disorder, also known as CDD; dementia infantalis, disintegrative psychosis or Heller’s syndrome; Pervasive Developmental Disorder also known as PDD or atypical autism.
Q. How common is this disease in Sri Lanka and in the world?
A. Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the autism spectrum–a tenfold increase in prevalence over the last 40 years. In Sri Lanka Autism may be more common than most people think. Though no proper statistics are available the actual numbers may be higher due to parents being reluctant to admit that their child has a development problem because of the stigma surrounding the condition. Delay in getting the child examined by a professional could result in a delay in getting treatment he/she needs.
Q. What happens if they delay getting their child the proper treatment?
A.This would delay him or her getting the interventions specifically tailored for each child, and which are now in place in our health system.
Q. What are the signs and symptoms of Autism? Is it identifiable even when the foetus is still in the mother’s womb?
A. The timing and severity of autism’s first symptoms can vary widely. Some children with autism show hints of future problems within the first few months of life. In others, symptoms may not become obvious until 24 months or later.
Q. At what age is a parent able identity these symptoms after the baby has been born?
A. Possible signs of autism in babies and toddlers are usually discerned as follows: By 6 months, no social smiles or other warm, joyful expressions directed at people. By 6 months, limited or no eye contact. By 9 months, no sharing of vocal sounds, smiles or other nonverbal communication.
By 12 months, no babbling. By 12 months, no gestures to communicate (e.g. pointing, reaching, waving etc.) By 12 months, no response to name when called. By 16 months, no words. By 24 months, no meaningful, two-word phrases, and loss of any previously acquired speech, babbling or social skills
Q. Are there possible signs of autism at a later stage? If so what are they?
A. Yes. Parents should look for the following signs in an older child: Avoids eye contact and prefers to be alone. Struggles with understanding other people’s feelings. Remains nonverbal or has delayed language development. Repeats words or phrases over and over (echolalia). Gets upset by minor changes in routine or surroundings. Has highly restricted interests. Performs repetitive behaviours such as, flapping, rocking or spinning. Has unusual and often intense reactions to sounds, smells, tastes, textures, lights and/or colours.
Q. I understand there are certain factors that put some individuals more at risk of getting Autism. Do you agree? If so what are they?
A. There may be many different factors that make a child more likely to have ASD. They include the following: Children who have a sibling or parent with an ASD are at a higher risk.
ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down Syndrome and other chromosomal disorders. Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid. Twelve to 13 percent of autism cases stem from pregnancy issues that result in prematurity, low birth weight or Caesarian section.
A recent multinational study of parental age and autism risk found increased autism rates among the children of teen moms and among children whose parents have relatively large gaps between their ages.
Q. Diagnosis? How is Autism diagnosed? Is it a complex procedure?
A. A diagnosis is the formal identification of autism, usually by a multi-disciplinary diagnostic team.
Q. Who comprises this team?
A. The team usually includes a, paediatrician, speech and language therapist psychiatrist and/or psychologist.
The characteristics of autism vary from one person to another, but, for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these limit and impair everyday functioning.
Q. Can Autism be cured? What is the usual treatment given to persons with this disorder?
A. There is no ‘cure’ for autism. However, there is a range of strategies and approaches - methods of enabling learning and development - which people may find to be helpful. Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs. Intervention can involve behavioural treatments, medicines or both. Early intensive behavioural intervention involves a child’s entire family working closely with a team of professionals.
Q. What are the challenges that face those dealing with the care of autistic children?
A. Mostly, delay on the part of the parents to bring their child early to be examined if they see anything different with regard to his development and growth. All our state hospitals have free screening facilities to evaluate the child and introduce the specific interventions that are best for him. Prejudice and superstitions are the main deterring factors.
Q. What about education ?
A. That too. The more educated parents usually come as soon as they see something unusual about their child’s behaviour. It is the parents in very rural areas who are likely to delay in bringing their child for testing.
Q. At the special unit for autistic children at your Centre, I understand, you have recently introduced a new App solely for autistic children. Can you tell us about this App and how it benefits such children?
A. In December 2017, we have introduced Avaz Sri Lanka which is the first Augmentative and Alternative Communication (AAC) app in the Sri Lankan languages (Sinhala and Tamil) to help children and adults with speech and communication difficulties. AAC assists or replaces speech for children with Autism, Cerebral Palsy, Down Syndrome and other developmental disorders as they find it difficult to communicate, either due to speech difficulties or other factors.
This app serves as an alternative device that facilitates communication for these children. The picture and text based communication system converts pictures to speech. It contains pre-recorded words and phrases, allowing many more to be added to suit the user’s needs.
Using this app, children can select pictures that then voice out the word, thus enabling them to express themselves. Prior to the introduction of the app, paper-based versions were used; and these come with limitations – words and pictures from which the children can choose are less; also, paper is subject to wear and tear. English speaking children however, had the benefit of using apps because the English version has been available for a while.
With the app, choices are in abundance – in addition to the numerous words and pictures already available in the system, users can add many more as the app is customizable to suit the needs of the individual child.
Q. Do you have a message for parents with autistic children?
A. If your child’s behaviour reflects a development problem at any stage of his life, do not delay getting the child examined by a professional psychologist and psychiatrist in order to enable him to enjoy his / her fullest potential.