Intro to this month’s spotlight
Rukhsana Shah has been working on autism awareness in Pakistan for more than 20 years.
Inspired by her own experiences, she has been championing autism awareness in Pakistan ensuring that individuals with autism do not face the same lack of understanding she and her son faced at the beginning of their journey.
What inspired you to work on autism awareness in Pakistan?
I am a mother of a young man with autism. He was diagnosed in the United States in 1990 when I was visiting my parents. At that time, there was hardly anyone in Pakistan who had even heard of this disorder. Even in the US, it was a new field at that time. When I returned to Pakistan I tried to learn as much as I could but there was no internet at that time. I had to send him to different schools where he struggled with education and socialization.
In 2000, when he was eighteen and we had returned to Pakistan after a four year stint in London, I carried out a survey of all the resources available in Lahore (doctors, paediatricians, neurologists, special schools) and found that children with autism were being misunderstood and maltreated by the professionals because of lack of awareness.
2001, I set up in an NGO called Ramaq, to raise awareness about autism in the country through seminars on the subject in all major cities. We participated in the First Regional Conference on Autism, which was attended by delegates from India, Bangladesh and Bhutan. The regional collaboration to learn together continued and subsequent conferences have been held in Bangladesh and India.
You are now the Chairperson of ASD Welfare Trust (ASDWT). Tell us more about the work of ASDWT?
After my retirement from government service, I set up the ASD Welfare Trust in 2015 with the collaboration of Mahvash & Jahangir Siddiqui Foundation. We have offices in Lahore and Karachi and our main objectives are to:
- Create awareness in all cities and towns of Pakistan;
- Train doctors, nurses, paramedical staff, as well as teachers in diagnosis and management of children with autism; and
- Advocacy for skill development and employment of persons with autism by writing in newspapers and television and radio programmes.
What do you think are the greatest challenges for parents of autistic children in Pakistan?
The list of challenges is long.
The most important problem is that early diagnosis is very difficult especially in the rural areas, with the result that by the time parents get to know about autism, the child is already quite considerably older, and intervention therapies are not so effective. At the same time, there is a critical shortage of special education teachers and therapists in the country, and whatever therapies are available, these are too expensive for parents.
Schooling is a big issue. There is an acute shortage of special schools in the country, while mainstream schools do not accept children with autism. In my opinion many of them are not equipped to do so even if there was appropriate legislation in this regard as mandated by the UN Convention on the Rights of Persons with Disabilities
Thirdly, due to abject poverty, a child with autism is more neglected in terms of attention, nutrition, medical support and education compared to his numerous siblings who have a better chance of survival.
Do you think the situation has improved since organisations like yours have been working on this issue?
Yes, certainly. There is more awareness about autism and learning disabilities in Pakistan now and especially among teachers of special schools. I carried out a survey at Amin Maktab School in Lahore in the year 2000, where 80 per cent of the children were said to be “Mentally Challenged”. We gave the teachers and staff three days intensive training in diagnosis and assessment and checked again after three months: the number of children labelled “Mentally Challenged” had gone down considerably, replaced by a recognition that many of those children had autism. The same is true for many other schools in the country. There is also more awareness about autism in the medical community now compared to 15 years ago.
What aspects of Pakistani culture do you think are particularly supportive of individuals with disabilities?
There are many factors that can be an asset but can sometimes undermine support for autistic individuals too. For example, our joint family system can be an asset as it provides children with a deeper sense of security, while also providing opportunities for extended social interaction, understanding and support. However, the same set up can lead to blame for the mother, leading to added pressure and even breakup of the marriage.
What advice would you give to a mother whose child’s autism diagnosis has just been confirmed?
That she must leave no stone unturned in improving the future of her child; that she must develop a positive attitude to ensure positive outcomes; and that while she must learn as much as she can about autism and its therapies, she must also keep a firm grip on her instincts and intuition.
You can find out more about the work of the Autism Spectrum Disorder Welfare Trust. To find out about other organisations working on autism in Pakistan see our Resources section
