The First Regional Conference on Autism was organised by Ramaq Centre for Awareness and Social Responsibility in Lahore on 16^th and 17^th December 2005. 175 parents, special schoolteachers and professionals attended the Conference. Speakers made presentations on different aspects of Autism, Inclusive Education, Intervention Strategies and Teachers Training Programmes from India, Bangladesh, Bhutan and Pakistan.

The Conference was a landmark in Ramaq’s Autism Awareness Campaign that it has been running in Pakistan since 2002, as it was the first time that speakers and participants from the South Asian region got together to discuss issues relating to Autism, advocacy and services required to improve the lot of people with Autism.

Autism is a developmental disorder about which very little is known in Pakistan. While we are all familiar with Downs and MR, Pervasive Developmental Disorders including Autism, Asperger and Rhett’s Syndrome have just recently started to attract the attention of teachers and parents. Autism is a complex pervasive developmental disorder that affects the normal development of the brain in the areas of social interaction and communication skills. The people falling within the Autism Spectrum Disorders can have severe to mild developmental disorders. In severe cases, the child is unable to communicate through either 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 through intervention programmes and tremendous progress achieved in developing learning and living skills. The more mild cases of autism can usually be trained to cope independently with their disability, taking up jobs and living on their own.

Evidence shows that early intervention results in dramatically positive outcomes for young children with autism. That is why it is critical that diagnosis is carried out as early as possible, for which paediatricians and psychologists need to be sensitized and trained in this area. Even in developed countries, it is only recently that emphasis on early diagnosis has resulted in a phenomenal increase in the number of people diagnosed with the Autism Spectrum Disorder. The latest statistics from the Autism Society of America show that the incidence of autism can be as high as 4 persons in every 1000. This would mean that in Pakistan, there are more than 600,000 people suffering from Autism Spectrum Disorders.

The Conference highlighted the need for early diagnosis, appropriate interventions at home and at school, specific training programmes for teachers and carers, and improvement of public services for people with Autism through advocacy and legislation.  The keynote speaker was Dr. Shahnaz Ibrahim from the Aga Khan University, who gave a detailed presentation on Autism and its implications.

Ms. Merry Barua of the Action for Autism (AFA), New Delhi, stated in her presentation that while there was a tremendous increase in awareness about autism in India since the last fifteen years, there was still a poor understanding of the disorder. Due to limited facilities of special education for children with autism, the burden of care fell on families. There was a need to build up counselling, training and support services all over the country, and not just in major urban centres. The AFA provides diagnosis and assessments, along with an outreach programme of counselling, home management programmes, parents and teachers training, vocational and living skills programmes, and the Open Door School for Early Intervention.

According to Mrs. Sabina Hossain of the Society for the Welfare of Autistic Children in Dhaka, there is no data on the prevalence of autism in Bangladesh, but it is estimated that one child in 500 is affected by autism. Many autistic children who are taken to the doctor are often misdiagnosed or referred to psychiatrists who get them on antipsychotic drugs straight away. SWAC was founded by parents of children with autism in the year 2000, and has providing early diagnosis and intervention to a limited number of children due to financial constraints. Mrs. Hossain stated that the Ministry of Social Welfare has introduced disability allowance and 10% quota in the job market for the disabled recently. It remains to be seen how much of this quota will actually be implemented.

Dr. Shazia Maqbool from Pakistan talked about the Autism Unit set up by her at the Children’s Hospital in Lahore in 1998. The Unit not only provides diagnosis, but also early intervention in terms of training of parents, and two to four hours of therapy provided by a multidisciplinary team consisting of a trained paediatrician, paediatric neurologist, child psychiatrist, clinical psychologist, speech, sensory, physical and occupational therapists, and an audiologist. Dr. Shazia, however, stressed the need to create awareness about autism in society, since the number of diagnosed patients had not increased significantly despite the availability of this service in Lahore.

Mr. Jannik Beyer, an educational psychologist and Autism Specialist currently working in Bhutan with the Ministry of Education on an Inclusive Education project, gave a detailed presentation on Inclusive Education in general, and knowledge-based quality education in particular. He pointed out that out of the 10 core life skills stated by the World Health Organisation is critical for a better quality of life, people with autism did not have a single one. These were self-awareness, critical thinking, decision making, inter personal skills, coping with emotion, empathy, creative thinking, problem solving, effective communication and coping with stress. He stressed that a child-friendly curriculum in any school should be broad, balanced and open to provide children with a diversity of skills, build on positive social and cultural values, celebrate all learners, respond to the diversity of learners and provide opportunities for all students to learn and achieve.

Dr. Radhike Khanna of the SPJ Saadhana School in Mumbai showed a film and gave a presentation on the Saadhana School that runs programmes for about 120 persons with mixed disabilities. She stated that teachers who have interest, love and commitment to helping children with special needs were most successful in bringing about a positive change. She presented several case studies showing how children with profound autism and other learning disabilities had made tremendous progress, and some of them were even working as designers, bank officers and craftsmen in Mumbai. Her approach and commitment was inspiring for the special school teachers, and gave a great deal of hope to parents participating in the conference.

Ms. Viveka Chattopadhay gave two presentations on Early Intervention methodologies, and developing Teachers Training Curricula in developing countries. Ms. Merry Barua gave two additional presentations on Teachers Training Programmes and Verbal Behaviour Analysis, while Ms. Parul Kumtha spoke about Forum for Autism, a parents network in Mumbai and how it helps parents of children with autism to not only cope with their children with autism, but also on how to lead social and fulfilling lives themselves. Dr. Nelofer Halai of the Aga Khan University also spoke about the role of parents, while Sister Gaitonde, principal of the SPJ Sadhaana School talked about the role of counselling for parents.

The wide range of topics kept the audience riveted and interested, and the panelists from different professions and special schools added to the interest by offering additional services to parents and advocates of autism in Pakistan.

It was announced at the Conference that the Second Regional Conference on Autism would be organised in Bangladesh by the Society for the Welfare of Autistic Children (SWAC) in Dhaka in November 2007.

 Rukhsana Shah