Needed a sensitivity for special care

Dr Gitanjali Natarajan

Autism is a serious neuro-developmental disorder among young children that now occurs at epidemic rates in developing countries like India. Globally, the prevalence of autism is estimated to be between 1 in 500 to 1 in 166 children (The Centers for Disease Control and Prevention, USA). There have been no epidemiological studies of autism in India, nor in any developing country to provide a definitive estimation of prevalence. However, prevalence rate in India is approximately 1 in 500 kids that means more than 2 million children are affected with Autism Spectrum Disorders (ASD). 

The severity in autistic symptoms is found to be less in India when equated with Western countries. The various socio-cultural factors could be protective. However, the conventional treatment approach’s in India is quite inadequate. 

Whereas earlier, it was understood that a child had to be at least 3 years before autism could be identified, currently new screening tools are able to pick up autistic features in children at risk even as early as 18 months of age and younger. Detecting autism at the earliest is of utmost importance to optimise treatment outcomes. 

Early markers

There is evidence that reduced levels of social attention and social communication, as well as increased repetitive behaviour with objects, are early markers of ASD between 12 and 24 months of age. Additional potential markers include abnormal body movements and temperament dysregulation. 

The specific factors that influence the development of ASD are unknown, but it is clear that genes play a large role in its causation. About 5 per cent of autistic patients with autism have chromosomal abnormalities. However, the majority of molecular genetics research on ASD suggests that the disorder is not inherited in a Mendelian fashion; instead, multiple interacting genes as well as non-genetic (i.e. environmental or epigenetic) factors are likely to be involved in up to 95 per cent of cases of ASD.

Rising awareness

Awareness about autism in India has risen in the last decade. Growth has occurred in numerous domains such as diagnosis, treatment and educational options, parental involvement, vocational options, human resource development and legislation. 

From the point of view of diagnosis, clinical accounts show that disparities among families of children with autistic spectrum disorders interfere with timely diagnosis and interventions in general. Besides this, families in rural areas have lower accessibility for assessment and treatment. The concerns about stigma often prevent parents from getting the assessment done. These problems call for greater awareness and accessibility for specialised services. 

Need for sense and services

There is also a need for increased sensitivity among primary healthcare providers to detect developmentally challenged children and refer them to the specialised services. Number of specialists and institutions that are equipped to manage autism are very few in India. Parents often find themselves directionless and frustrated when trying to access good treatment and after care options for their child with autism.

Studied approach

Numerous studies are increasingly researching the biological causes behind autism. These include the studies that look at the effects of genetic mutations resulting in social and cognitive deficits and effectiveness of pharmacological interventions. Simultaneous research is also taking place about the psychosocial interventions in autism. Many studies have found that peer-participated social interventions have produced striking improvements in social outcomes of autism. Cognitive researches are focusing on how executive functions are affected in autism. For interventions, the best-researched programmes currently involve intensive, early home based Applied Behaviour Analysis (ABA) interventions and those which focus communication and parent-child interventions.

Parental perspective

Parents with autistic children should be calm and able to accept their child unconditionally rather than feeling embarrassed about their child’s behaviour. They should be able to see the positives in their children as well as be aware of what the kids can and cannot do. The parents should understand the disorder well enough to be able to tell those involved in the child’s care, such as teachers, and care-givers about the strengths as well as challenges that the child faces on a day-to-day basis. 

Studies also show that parent-implemented autism intervention works, indicating that parents should be actively involved in therapy and be given psychological training. Through parent management training (PMT) parents successfully can learn new strategies to use with their children at home leading to positive changes in their children’s social and communication skills. Because the child is learning new things at home with the people closest to him, learning becomes natural, motivating, and ongoing. 

Treatment and rehabilitation

Though, significant advancements have happened in the area of assessment and identification of autism, the treatment and rehabilitation is highly inadequate, especially in the government sector. Hence, parents have to shell out huge amounts of money for daily behaviour therapy, occupational therapy and speech therapy in private centres. Many times, they are forced to relocate to places that have such centres. There are no schools that specifically cater to children with autism. Hence, such kids struggle to adjust and study in schools meant for normal children or have to settle for special schools meant for children with mental retardation. Both these scenarios are not beneficial for the autistic child or their parents.

In short, we need better infrastructure, more resources, trained healthcare providers, specialised institutions, a dynamic government approach and above all a sensitive and empathetic society to provide a conducive atmosphere for such kids to flourish. 

— The writer is head of department, clinical psychology, Amrita Institute of Medical Sciences, Kochi

Developmental red flags

The following delays warrant an immediate evaluation by your child’s paediatrician:

By 6 months: No big smiles or other warm, joyful expressions

By 9 months: No back-and-forth sharing of sounds, smiles, or other facial expressions

By 12 months: Lack of response to name; No babbling or “baby talk”; No back-and-forth gestures, such as pointing, showing, reaching, or waving

By 16 months: No spoken words

By 24 months: No meaningful two-word phrases that don’t involve imitating or repeating

— Smith. Et.al (2018)