National plan for autism, development disorders needed:

Autism treatable

by Carol Aloysius

Autism is thought to be five times more common in boys than girls www.optibacprobiotics.co.uk

A sharp rise in children with neuro-developmental disorders including autism, has raised concerns among health professionals, who pointed out at a media seminar on World Autism Day on April 1 that one in 93 children in Sri Lanka had been diagnosed as having autism, a substantial growth over the past decade. Early detection and treatment, they stressed could minimise the adverse effects of this condition. Unfortunately a lack of child psychiatrists and trained staff has prevented many of these children from getting optimum benefits from services available to them. What is urgently required is a National Plan to help such children islandwide. This has been underscored by an eminent child psychiatrist who says most parents often detect their children are autistic and have development problems too late. Early treatment and intervention is the key to help them lead normal lives, she points out.

Here, Senior Lecturer in Child and Adolescent Psychiatry, Honorary Consultant in Child and Adolescent Psychiatry, Lady Ridgeway Hospital for Children, Dr Sudharshi Seneviratne discusses what Autism is, its early symptoms, how parents can cope, and why a national plan to manage them is so urgent in her 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? Is it a mental disorder? Does it affect the brain?

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 categorised as a mental disorder as it affects the developing brain, and certain areas that need to have developed become 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 levels of autism? Is it a lifetime disorder?

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

Q. What are the symptoms? How early can they be detected?

A. Autism can be identified very early in life when we are able to detect the delays in the developmental milestones. The main symptom of presentation is delay or abnormality in the speech development. Here the speech development 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 recognise, although in Western countries there are more sophisticated methods to screen children with eye tracking and movements. But these are still at an experimental level.

Q. From your experience at what age do Lankan children begin showing symptoms?

A. In Sri Lanka children mostly present symptoms at around two 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. You referred to poor social interaction, and how parents find it difficult to detect this early. Can you explain this in detail ?

A. Children with autism are quite on their own. This is one of the main diagnostic features. The reason for this is there poor ability to engage in normal social communication. Due to 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 to mention some defects in the social communication area.

Q. Any other unusual features that set them apart from ' normal' children?

A. Repetitive stereotypic behaviour and rituals such as hand flapping, turning in circles, inability to be in one place. There may show preference to single type of toy or game, have poor sleeping patterns, feeding problems and have temper tantrums.

Q. Does this behaviour vary from child to child?

A. One set of problems may be quite unique to such children while some symptoms can be common to many. Their behaviour is not very predictable. These children can react in abnormal ways to even the slightest change making it difficult to predict their behaviour. .

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

A. The latest findings reveal that their IQ levels are 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. Does this mean they are mentally retarded?

A. In one sense yes. IQ levels below 70 are considered as children with Intellectual Impairment. (II) so most of them will come under this category

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? Genes? Injury to the brain?

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 treat such children?

A. There are no medications to treat autism. The treatment is through a multi- 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 needs to be used sparingly.

Q. 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. With your long experience in the field, what shortcomings do you see in 1) detecting 2) treating 3) educating these children and their carers.? Do we have enough child psychiatrists to attend to them?

A. In reply to this question 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. We have good evidence that early detection is important for therapy to be of benefit. We also need to educate health professionals on how to diagnose and advise parents to be vigilant of early signs and symptoms. We also need to have a skilled cadre of clinicians to provide therapy.

Q. In that case, will an action plan on a national scale be the answer to helping them?

A. We definitely need a national program for early detection and intervention for children with developmental needs. There are only very limited service providers who have the necessary skills to manage these children.

These children need to be managed in a multidisciplinary team with input from the child psychiatrist, occupational therapist, speech therapist and educational psychologists.

All these sectors are still not developed. These shortcomings hamper services that can be provided for these special needs children.

It is very important that these services are established around the country as patients coming from long distances find it difficult to come regularly to attend our clinics.

There are adult psychiatrist in every district and a well developed network of paediatricians and primary health care workers. The national plan will incorporate all of these resource persons and an early detection that will occur at four different points in the child's life from birth.

When the children are screened they will be referred to a locally placed service providing institute which will house the entire multidisciplinary team.

The main aim would be to train the parents who would function as therapists at home and necessary guidance will be provided to them from time to time.

It is also important to project to the future to think of the problems these children will face when they have to enter school, interact with peers and also in the future with regards to employment and independent living. These are areas we will need to plan for the future.

Q. Your message to parents?

A. Focus on the positive outcomes, if therapy is delivered in time. If you have concerns about the child's development get him or her seen by a clinician immediately.