Working towards conquering autism

In the morning of September 8 we started from our residence at Uttara well ahead in order to reach in time the scheduled meeting at New DOHS, Mohakhali, Dhaka-1206. Luckily there was thin traffic which enabled us to enjoy the drive. We got a first-eye view of the scene before the meeting. I took notes that I would share with dear readers as usual in my column since the beginning of 21st century. While my grandson, now adult Fahim Hasan, sat around a nice table in a cozy atmosphere with his mother Dr. Shamima Islam Shumi and Grandma Prof Laila Akhter who exchanged views between them, fixed up the points of discussion, mutually understood quickly in the meeting that turned out very useful between us and this outlet run by dedicated and affected persons who deserve thanks.

The Parents Forum for Differently Able (PFDA) with fisted hands works on the natural volition of human beings-Love, Nurture and Protection-to the autistic divine and stick to the slogan 'They're Differently Able, not Disabled". In every special child/person there is genius; what are needed is love, nurture/ training and protection. The PFDA Centre is meant for the persons with Autism, Cerebral Palsy down Syndromes, Intellectual and Neurological Disabilities.

It is a platform that seeks opportunities for special boys and girls aged 15 years and above to work by providing required training to them and ensuring practically-possible honorable life and living. It imparts individual people need-based training in a structured manner after identifying working abilities and qualities by combined efforts of specially-trained trainers and parents. The Centre staff and volunteers are committed to using the ability of each trainee to the maximum, arranging in a special case a separate and practical lifestyle. It has outlets and contacts with shopping malls to sell their products. So an effective marketing system in social spirit is developed which works both ways commercially and continuously, monitored for sustainable links and expansion.

  The fields of training and output are: Bakery, prepare breakfast items and bread, carpet slipper, jewellery items like necklace, earring, bracelet, anklet; block works, mushroom and gardening, catering service, food service, tailoring, sewing, art and crafts, painting, first aid, paper bag, presentation, photography, T-shirt folding, computer, colouring, cleaning, therapy, cricket, cultural music, dance, acting and drama, office assistance, keeping account of money and transactions. Each plan is prepared by the Centre, based on an individual trainee's preference, is monitored tri-monthly and adjustments are made as needed. There is the Bangladesh Skills for Employment and Productivity (B-SEP) Project there with the International Labour Organisation support in this regard.

The educational curriculum, lifestyle training, physical training, recreation and sports are designed by the Centre thru a combined plan. Home visits are undertaken and assistance is provided to each family considering their home environment and safety matters.  No doubt all these are challenging tasks, which the Chairman Sajida Rahman Danny and Principal Begum Nur Jahan Dipa along with support staff have been doing without any craving for publicity and award. The outcome has been visible over the last four years.

The sincere wish of Prime Minister Sheikh Hasina and her qualified daughter Saima Hossain, National Steering Committee Chairman and Shuchana Foundation Chairman, have opened the new horizon, which we acknowledged with thanks and wished all concerned would reciprocate honestly. Government funds and international assistances and tours are increasingly provided to ameliorate the conditions of autism, undertake action researches and implementation of welfare objectives. Links with foreign countries for study tour, view exchanges and trainings have been established. It is time to evaluate all those and fix up the next programme's target after due evaluation and removal of shortcomings. It is expected that the enabling environment will create a mindset in each level of hierarchy of bureaucracy for working with passion.

Danny has suggested some steps for taking up on a priority basis countrywide for moving forward qualitatively, not quantitatively only, which we endorse. It is to be kept in mind that autism is not a marketing commodity for making fortunes by some self-seekers.  If qualities' standard is not ensured, the affected persons would not get proper benefits. The felt needs are to develop appropriate curriculum, syllabus and education's minimum standard, their registration process, monitoring and evaluation, ensuring appropriate classrooms and teaching aid before expansion to different places.

There is no substitute for proper management and trained 'Special Educator' caregiver therapists, support of parents to provide service, reduce severity of affected persons and convert their dormant merit into resource. Parents pay individual cost, fees of each trainee charged by the Centre for running an outlet. There are still good men who do not hesitate to extend helping hands without any material expectations, which are gratefully acknowledged.

 At present in special education curriculum under 'mental retardation' there is a topic on autism which is insufficient to help acquire knowledge on this subject. It is high time to make it a separate subject in that curriculum and get it adopted by the universities of the country. It should be compulsory for every teacher before taking a job that he has practical attachment to gaining experience of working with students. There should also be scope for higher education for students with special needs. All these presuppose serene academic atmosphere at campuses and universities free from partisan teachers' politics and violence.

It is seen that various voluntary and government organisations are imparting training and holding related events which are encouraging. Steps were taken on an ad hoc basis for autistic children and adults under the pressure of circumstances. What is needed now is to utilise the proper research and experience which will save time and money and keep quality standard and spread it countrywide. In case of residential rehabilitation/reasonable accommodation, a properly thought out policy is expected which would involve public-private partnership. It is not enough to have a good NDD Protection Trust Act for benefit of affected persons and families; its implementation should be accorded the highest priority.

 The writer is an economist, advocate and social activist

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