Living: Caring for an autistic child

Access to good treatment and aftercare for autistic children is still a parent’s dilemma

Autism is a serious neuro-developmental disorder among children that now occurs at epidemic rates in developing countries like India. Prevalence of autism globally is estimated to be in between one in 500 to 1 in 166 children.

The severity in autistic symptoms is found to be less in India when compared to Western countries. The various socio-cultural factors could be the reason for this. Earlier, a child had to be at least three years old before autism could be identified. However, currently, new screening tools are able to pick up autistic features in children even as early as 18 months of age and younger. Detecting autism at the earliest possible age will optimise outcomes for children with the disorder.

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 following developmental 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

Social stigma

In case of diagnosis, clinical accounts show that disparities among families of children with autistic spectrum disorders interfere with timely diagnosis and interventions in general. Apart from this, families in rural areas have lower accessibility for assessment and treatment. The concerns associated with stigma often prevent parents from getting the assessment done. These problems call for greater awareness and accessibility for specialised 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. There are very few specialists and institutions that are equipped to manage autism in India. Parents often find themselves directionless and frustrated when trying to access good treatment and aftercare for their autistic child.

Meanwhile, biological causes of autism are increasingly being researched upon. Studies are looking at the effects of genetic mutations resulting in social and cognitive deficits and effectiveness of the medication. Studies on psychosocial interventions in autism have found that peer participated social interventions have produced striking improvements in social outcomes of autism. Cognitive researchers are focusing on how executive functions are affected by autism.

Parents’ role

Talking about parents approach towards autistic children, here are a few things that the family of an autistic child should keep in mind:

Parents should be calm and able to accept their child unconditionally rather than feeling embarrassed about child’s behaviour.

They should be able to see the positives in their children and be aware of what they can and cannot do.

They should understand the disorder well enough to be able to tell those involved in the child’s care, such as teachers, about the strengths and challenges that the child faces everyday.

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, parents can learn new strategies to use with their children at home for positive changes in their children’s social skills. If the child learns new things at home with the people closest to him, learning becomes natural, motivating, and ongoing.

Although significant advancements have happened in the area of assessment and identification of autism, the treatment and rehabilitation are highly inadequate, especially in the government sector. Hence, parents have to shell out huge amounts of money for behaviour, occupational and speech therapies at private centres. There are no schools that specifically cater to children with autism. Autistic children struggle in regular schools or have to settle for special schools meant for children with mental retardation.

(The author is head of the Clinical Psychology department at Amrita Institute of Medical Sciences)