What Is Autism?

Autism is a developmental disability about which very little is known in Pakistan. It is a complex developmental disability that affects the normal development of the brain in the areas of social interaction and communication skills. It is a pervasive developmental disorder with a spectrum of varying levels of abilities and weaknesses. In severe cases, the child is unable to communicate either through language or gesture – in fact it may appear that he is so confined within himself that he does not feel the need to communicate. There is a complete lack of understanding of the outside world, and a distorted view of reality, leading to bizarre behaviour, tantrums, self-injury, and isolation. In persons with moderate autism, verbal language or communication can be developed, while the more mild cases of autism can usually be trained to cope independently with their disability, taking up jobs and living on their own.

An important sign of autism is that language development is uneven, and many autistic children do not use it as a means of communication or understand linguistic concepts and patterns. Intellectual development and functioning is not balanced and continuous among autistic children, who demonstrate unusual strengths and weaknesses in different subjects or fields at different times. The range is unusual: some individuals may be very good in music, mathematics or computers, but at the same time they may be hopelessly inadequate in comprehending basic family relationships
Some important signs of autism are that the child may:

• Prefer to be alone; appear unaware of other people’s existence
• Not respond to name and may on occasion appear to be deaf
• Appear to avoid gaze or show unusual eye contact
• Not seek comforting even when hurt or ill
• Not smile in response to parents face or smile
• Have difficulty in mixing and playing with other children
• Not try to attract attention to his/her own activity
• Not look at a toy across room when adult points at it
• Not look at things adult are looking at
• Have difficulty taking turns in turn-taking games or activities
• Not imitate adults’ actions
• Not pretend to play house, talk on phone
• Have unusual or repetitive play, lack or have limited pretend play
• Have extreme unusual fears or have poor awareness of danger
• Have language delay or loss of early acquired Language
• Rarely or not use gestures to communicate
• Lead adult by the arm to have needs met
• Reverse pronouns
• Echo words or phrases
• Have difficulty in initiating and sustaining conversation
• Enjoy rotating or spinning objects, or lining up objects, twirl objects
• Be occupied with parts of objects like knobs, switches, wheels
• Show apparent insensitivity to pain
• Show resistance to change in routines or surroundings
• Display repetitive actions and ask repetitive questions
• Not cuddle or stiffen when hugged or cuddled
• Display unusual behaviour or body movement such as spinning, hand flapping, head banging, or rocking
• Show extreme distress for no apparent reason
• Appear unaware of distress in others
• Display good rote memory for nursery rhymes, commercial jingles, and irrelevant facts

People with autism process and respond to information differently. Educators and other service providers must consider the singular pattern of learning strengths and deficiencies in the individual with autism to ensure effective intervention. The abilities of an individual with autism may fluctuate from day to day due to difficulties in concentration, processing, or anxiety. The child may show evidence of learning one day, but not the next. Changes in external stimuli and anxiety can affect learning. Many autistics may have average or above average verbal, memory or spatial skills but find it difficult to be imaginative or join in activities with others.

Evidence shows that early intervention results in dramatically positive outcomes for young children with autism. It is therefore crucial that these children are spotted by paediatricians very early – before the age of 3, and then diagnosed properly by a team of experts. In Pakistan, paediatricians, neurologists and even psychologists in big cities like Karachi and Lahore, do not know much about autism, and fail to advise parents about measures that can be taken to ameliorate this condition. The only exceptions are an Autism Unit at the Children’s Hospital in Lahore, and the Department of Paediatrics at the Aga Khan University in Karachi which provide diagnostic facilities and some help on behaviour management.

At present, most Special Schools in Pakistan categorize children with autism as mentally challenged and do not address their specific disabilities and requirements. This situation needs to be addressed quickly because it is very important to create a separate space for children with autism and run structured and tailored intervention programmes for them in order to improve their performance and develop their potential. A few schools in Karachi and Lahore are in the process of making separate units for these children and it is hoped that these would pave the way for specialized schools for autistic children where specific and structured intervention programmes can be followed.

For children with ASD, the intervention programmes should be appropriate, highly intensive and structured with applied behaviour modification techniques, extensive use of visuals to accompany instruction, highly structured schedule of activities, parents and staff training, transition planning and follow-up. Because of the spectrum nature of autism and the many behavior combinations which can occur, no single approach is effective in alleviating symptoms of autism in all cases. Various types of therapies can be made use of, including ABA, TEACCH, PECS, discrete trial teaching, occupational and sensory integration therapy, speech/language therapy, music therapy and social stories, etc.

When parents first find out about their child’s disability, they go through the phases of bewilderment, self-blame, guilt, shame and rejection. Many parents get stuck at the last two stages. Only if they are informed about the details of the disorder and what can be done about it can they move from rejection to re-evaluating their child, and reaching a deeper understanding with him or her. At least 30 to 40 percent of the problems faced by persons with autism can be alleviated if the parents are informed and educated about the specific nature of autism, as this enables them to respond more positively to autistic persons, thereby creating an enabling and conducive space for their development.

At this stage, Special schools in Pakistan need the backing of university research and training to develop the potential of persons with autism and to make them independent and self-sufficient. What is needed is government intervention to encourage research on autism in the universities, establishment of proper diagnostic facilities, introduction of parents’ and teachers’ training programmes, and support of NGOs to create awareness about autism among people. Meanwhile, it is imperative that an awareness programme be initiated by parents and NGOs through the media and the universities, so that they can give their individual inputs and experience, contribute to teachers training programmes and build up a network of resource persons to help them with counseling and institutional support.

According to latest US statistics, one out of 54 persons is affected by ASD. It is therefore imperative that awareness campaigns about autism should be undertaken in every city, town and village of the country, and a critical mass of professionals and trained teachers be created to help individuals with autism and their families.