‘Autistic children need understanding, not sympathy’

Autistic children should be deeply understood. We should understand their problems (reason for their perplexing condition) and build a world around them which they find congenial.

This exhortation was made by Ms. Sadaf Shahid, CEO of The Circle-Caring for Children, at the Autism Learning Seminar, titled, “Evidence-based Practices in the Diagnosis and Treatment of Autism Spectrum Disorder (ASD)”, held at the National Institute of Child Health on Saturday.

“We need to make this world more accepting of children with such abnormalities, disabilities. We mustn’t forget that we are all different individually,” she said.

The incidence of the disorder was spreading rapidly, she said, adding that in 1960 one out of 10,000 children was likely to be smitten with the disease, while today it was one in 59. She was quick to clarify that autism is not brain damage; only the brain of a victim is heavier than normal.

Autism, she said, was not an acquired condition. A child is born with it. It is a genetic condition and is life-long, but that does not mean that it marks the end of creativity.

Enumerating the peculiarities of autistic children, she said that:

— Children with autism don’t like uncertainty

— They don’t initiate because they cannot

— Too much memory with too little processing

— Cannot think from another person’s perspective

— They cannot initiate and wait for being prompted.

— Such children don’t know how to start and when to finish

She said that parental counseling was extremely important in dealing with the children’s dilemma. Parents often did not get the message right and either became too optimistic about the condition of the child or were overly dismal.

They need to have a clearer comprehension of the child’s condition for which it is essential to impart counseling to them.

Others who spoke were Dr Shazia Kulsum of the National Institute of Child Health (NICH). She said that one of the characteristics of autism was the social communications gap. She said that sometimes autism was found to be connected with epilepsy, but it would not be right to say that one was the outcome of the other. “From available evidence,” she said, “epilepsy is rarely the result of autism and vice versa.”

Saba Naz of the Institute of Medicine and Rehabilitation Centre, Dow University of Health Sciences, discussed the various tools of diagnosis, IQ (intelligence quotient) assessment, and adaptive behaviour, and said that it must be determined whether hyper-activity was on account of autism or some other disorder. “Consulting a geneticist is also a must,” she said.

US-based behaviourial analyst Jawahar Alvi stressed the role of applied behaviourial assessment. She stressed the importance of evidence-based practices in which we asses progressive behaviour over a span of time.

Talking about evidence-based practices, Farida Saba Aslam, UNI-certified autism specialist, said that we must give prime importance to the fact as to whether the caregiver has the requisite qualifications. We have to stress early intervention.

She said there’s no fixed treatment for autism, and occupational therapy is recommended as an important part of the intervention.

She defined autism as a neuro-developmental disorder which has no cure but there are patterns (rehabilitation approaches which can make them functional and in some cases independent too) which can mitigate the disorder. Autism, she said, caused repetitive behaviour and hindered ability to communicate and interact socially.

Paediatric endocrinologist Dr Jamal Raza said that autism had become a major problem because awareness about it had increased. The chief solution, he said, was understanding and awareness. What was called for was the removal of taboos and those with problems like dyslexia were dubbed retarded, he said.

“The therapy has to be customised taking into account the different social and cultural backgrounds of the children. We need to have a thorough knowledge and good understanding of the disorder and the family circumstances.”

Najma Adnan (Adam), occupational therapist, dwelt on the role of occupational therapy installing the progression of the disorder.

Dr Wamiq Ali, of the Aga Khan University stressed the role of early intervention in the management of autism. He also spoke on the pharmacological intervention in coping with the disorder. Others who spoke were Dr Premchand, a senior paediatric neurologist at the AKU; and Dr Atif Saeed Anjum, paediatric neurologist at Rehab Department, NICH.