GREAT DIVIDE: Educational facilities for autistic children are available only in big cities (Picture by Aloke Mitra)

Pradip is a 55-year-old man, but is totally dependent on his octogenarian mother to care for him. Since childhood, he has been a loner and found it difficult to interact with people. Throughout his life, he followed certain routines because he cannot cope with any kind of change. He found employment in a factory after finishing school, but couldn’t continue for long. To compound his troubles, Pradip met with an accident a few years ago. Following the mishap, he became totally housebound and developed agoraphobia (a fear of open spaces). He was referred to psychiatrists. During the therapy, it was revealed that Pradip had an unusual fear about visiting doctors and hence his mother had to consult doctors over the phone. He was diagnosed with autism.

Autism is a condition marked by severe impairment of reciprocal communication or processing difficulties. Patients are likely to be reclusive, unable to pick up social cues and show resistance to change. The condition may also be associated with some unusual fears, as evident in Pradip’s case.

“Many autistics also experience sleep disturbance, food fads and repetitive non-goal- directed body movements. The key to successful treatment lies with clinical training and recognising the underlying condition. Clear communication strategies produced with the help of speech and language therapists and specialised teaching methods such as TEACCH help in minimising difficulties. This eventually allows the person to develop additional skills for survival and normal day-to-day living,” says Dr Sabyasachi Bhaumik, a consultant psychiatrist and head of a research team working with the Learning Disabilities (LD) service at Leicester Frith Hospital in Leicestershire in the UK. The multi-disciplinary service comprises a well-established psychiatric team, facilities for psychological counselling, physiotherapy, speech and language therapy and occupational therapy, community nursing and an outreach team facilitating support for the mentally challenged. The primary objective of the team working on LD is to provide patients with a holistic treatment that requires the involvement of carers.

In Pradip’s case, care is an issue of grave concern. If his mother passes away, he won’t be able to take care of himself. The only solution will be to seek the help of social services. In that case, he is most likely to be sent away to some residential home.

In the West, health and social services care for persons afflicted with LD or mental retardation. A considerable number of patients live on supported living schemes. In most cases, they receive state benefits in the form of a disability living allowance. On the other hand, psychiatrists are specially trained to deal with mental health problems of people with mental retardation. Moreover, other professionals like psychologists; specialist nurses, physiotherapists, occupational therapists and speech and language therapists are also involved in the treatment of LD patients. In India, however, such a social and medical support network is almost absent. Care is generally the sole responsibility of the patients’ families.

“There is an increasing awareness among Indian parents about mental retardation, especially in those who have children with autistic spectrum disorder. This awareness, however, is unfortunately patchy. Support groups and educational facilities are available only in big cities,” says Dr Bhaumik, who is also involved in developing a national curriculum for higher psychiatric training on LD in India. “There is a general lack of awareness about the fact that mental health problems are four to five times more likely to be present in the mentally retarded population than in the general population.” This is amply evident in the case of Rahul, who is a married man in his late thirties with three children. He suffers from mental retardation and has a history of aggressive behaviour, including self-injury. In fact, he was once arrested when a neighbour saw him grabbing his daughter by the hair and swinging her around him. Rahul’s parents, instead of seeking psychiatric help, thought it wiser to consult their spiritual guru. Abiding by his advice, Rahul’s parents got him married to a young woman so that she could bear him children to cure him of his illness. But thankfully, the wife understood his condition and went for proper treatment and also family planning advice.

Experts also rue the dearth of formal psychiatric training centres for trainee psychiatrists in India insofar as a holistic approach to treating mental retardation is concerned. There are only a couple of such centres, including NIMHANS, Bangalore.

In India, about three to four persons per 1,000 people are in need of such services. “There are special conditions like Downs Syndrome which are associated with under functioning of thyroid glands, increased prevalence of depressive illness and early onset (age 40+) of dementia. These physical and mental health problems largely go unrecognised and untreated,” says Dr Bhaumik.

At present, there is not much research on mental retardation in India, except in the field of social sciences. The Leicester Frith team is taking some initiatives in this regard. It is collaborating with institutes like Asha Bhavan Centre in Uluberia. It also plans to collaborate in research with the Thakur Hari Prasad Institute in Hyderabad and Father Muller Medical College in Mangalore. “These research projects will try to look at the prevalence of physical and mental ailments among the mentally retarded. Our aim is to increase the awareness of psychological, social and physical morbidities associated with mental retardation and to train professionals, including psychiatrists and caregivers in dealing with these issues,” concludes Dr Bhaumik.