In their own 'unreal' world

One in 93 children in Sri Lanka are diagnosed as having autism, but early detection can minimise the adverse effects:

by Carol Aloysius

Recent studies by the Health Ministry have found a sharp rise in the number of children with neuro-developmental disorders, especially autism. Health officials addressing the media on World Autism Day in April this year pointed out that one in 93 children in Sri Lanka had been diagnosed as having autism, a growth over the past decade. Early treatment, they stressed would help minimise the adverse effects of this condition to a large extent.

Dr. Sudarshi Seneviratne, Senior Lecturer in Child and Adolescent Psychiatry, Honorary Consultant in Child and Adolescent Psychiatry, Lady Ridgeway Hospital for Children, discusses what Autism is, its early symptoms, and how parents can cope with such children in this interview with the Sunday Observer.

Excerpts....

Q: Autism is still a relatively little known disability in Sri Lanka. Could you tell us more about this condition?

A: Autism is a neuro -developmental disorder, which means there is a delay in the development of the brain areas leading to delays in different aspects of the child's development. It is categorized as a mental disorder in the ICD 10. (International Classification of Diseases 10). It affects the developing brain and certain other areas that needs to have developed becomes delayed, giving rise to the symptoms. The exact location where the defect is, is not known but functional imaging has given probable areas where the defects might be present.

Q: Are there different types of autism?-e.g. Infantile autism and adult autism? And which is more common?

A: Autism can be considered as a spectrum disorder. This means the disorder can have different severities ranging from mild to severe degrees. This is a disorder that can be lifelong but some children can outgrow some of the symptoms with time. This is mainly true for children with mild to moderate severity of symptoms. On the other hand, those with severe symptoms will tend to have symptoms even as an adult.

Q: How early can the symptoms of autism be recognized?

A: Autism can be identified very early in life we if are able to detect the delays in the developmental milestones. The main symptom of presentation is delay or abnormality in the speech development. It could be delayed, or there can be regression in the acquired speech. If we look closely, some of the child's social interactions might also be delayed but this is a feature that parents find difficult to recognize. In western countries there are more sophisticated methods to screen children with eye tracking and moments but still at an experimental level.

In Sri Lanka children mostly present symptoms at around 2 years of age and then a diagnosis can be made confidently. There have been cases that have presented earlier due to parents being vigilant of the delays and even at the early age of around 18-20 months with a good history and observation a diagnosis can be made.

Q: These children live in an 'unreal' world of their own and find it difficult to have intimate relationships with human beings including children their age...?

A: Yes children with autism are quite on their own. This is one of the main diagnostic features. The reason for this is their poor ability to engage in normal social communication. In the absence of communication they will appear to be in their own world. Due to the lack of speech and normal social communication strategies they fail to engage with their same age group or even with parents. They lack eye contact social interactions, gestures, imaginative play and pointing to name some of the defects in the social communication area.

Q: What are the most significant behavioural patterns that set them apart from 'normal' children?

A: If we start from the early development, the main feature is their poor speech development. The speech can be delayed up to many years. Again as we mentioned their isolated behaviour is also quite evident from very small ages. There are other features such as repetitive stereotypic behaviours and rituals such as hand flapping, turning in circles, inability to be in a place.

Q: Any other uncommon behavioural patterns?

A: There can be other features like preference to a single type of toy or game, poor sleep, feeding problems and aggression and temper tantrums. Some of them can display symptoms with poor sensory integration either as hypo or hypersensitivity to different external stimuli.

Q: Does their behaviour vary from child to child?

A: These children can be unique. One set of problems may be quite unique to him and on the other hand some symptoms can be common to many. Their behaviours are not very predictable as we might not be clear about the reasons for some of their behaviours. These children can react in abnormal ways to even the slightest change making it difficult to predict their behaviour. With clear understanding of a child's usual behaviour we might be able to suspect the reasons for some of the changes in their behaviour.

Q: What about their learning abilities? Have they a lower IQ than normal children?

A: The latest findings reveal the IQ levels to be below average in around 70%. There is another group which we name as high functioning autism and they can have a normal or above normal IQ. Some of these children can have extensive knowledge on selected areas but the functional level of this ability may be limited.

Q: Is autism curable? Reversible?

A: This is not a disease which can be reversed. There can be improvements with adequate therapy and input from the patients. Being a developmental disorder the main area of therapy would be to work on the missing skills and have an intensive input to help the development.

Q: What causes it?

A: There is no clear understanding as to what causes autism. It is mainly a heritable disorder where the genes have a main part to play, but it is not the genes only.

We call this a gene environmental interaction where the susceptible gene in combination with an environmental factor can give rise to the illness. Some of the common environmental factors implicated have been agro chemicals, pollutants, viral infections.

Head injury is not a cause. Children with pre-maturity or with different syndromal diagnosis can be more prone to autism.

Q: How do you manage such children?

A: There are no medications to treat autism. The treatment is through a muti- disciplinary team input with behaviour therapy, speech therapy and specific occupational therapy for sensory issues. Medication management is only for some of the associated behaviours and these need to be used sparingly.

Q: If given drugs, will they have to take them for the rest of their lives?

A: Mainly to manage associated behaviour issues and only for short term

Q: Do autistic children need to attend special schools with specially trained teachers? Or can they attend normal schools?

A: Some of the children who develop adequate speech can be incorporated into normal schools for inclusive education.

It is better for these children to be educated by teachers who have some ideas on how to engage them and use skills that are beneficial for these children. It is best not to have these children in special schools as these schools do not provide the child with adequate social skills training with peer interactions.

Q: As a specialist in the field, what do you see are the shortcomings in our health system in 1) detecting 2) treating 3) educating these children and their carers? Do we have enough child psychiatrists to attend to them? Are there special wards or units in hospitals for them?

A: There are no services all around for these children. From the point of diagnosis treatment and education we lack the necessary resources and there is a large treatment gap.

This is a constant battle faced by the service providers as these children require a multidisciplinary input. There are only a very few child psychiatrists in Sri Lanka and they are placed in the capital. Services in the suburbs are very limited.

Q: What are the most urgent needs of these children right now?

A. There is good evidence to say that early detection is important if therapy is to be of benefit.

In my opinion we need to sanitize health professionals on how to diagnose and also parents to be vigilant of possible signs and symptoms. Second important area is to have a skilled cardre of clinicians to provide therapy

Q: Stigma surrounding autism has been a deterrent in encouraging more parents to have their children come to clinics for examination. Your comments?

A: I think the best way to handle this is for the public to be aware of the positive outcome if therapy is delivered on time. If we are able to highlight success stories more parents will be willing to come for diagnosis.

Q. Your message to parents and care givers?

A. If parents have concerns about the development of their child it is best they bring them to the notice of a clinician. There are many myths in our country so it is best to rule out a pathology before it is too late.