ONE of the most pressing issues in Pakistan for parents of children with neurodevelopmental disabilities such as autism is that once the parents and caregivers are no longer alive, their children or adults will not have any safe home to go to. This is a very real fear, because, usually, these orphans are divested of their property and income by close relatives, and even by guardians and trustees appointed to look after their interests.

In India, parents are actively involved in developing their own residential facilities on a self-help basis. There are more than 80 different models for autistic adults’ homes run by parents’ groups, ranging from large residential complexes like Ananda in Delhi and Badlapur in Maharashtra, to smaller housing options in Bangalore, Chennai, Hyderabad, Kolkata and Kerala. These group homes not only provide assisted living in safe and CCTV-monitored spaces, but also cater to the specific needs of persons with autism and related conditions by providing structured activities, academics, vocational training, sports, gardening and medical support. These homes are financed by parents and run by governing bodies comprising parents and professionals.

At Ananda, adults with disabilities are permanent residents as well as short-term visitors, who can stay for a few days and then go back to their homes. This gives respite to their families and also provides time to the young person to settle down in a space away from home. Respite homes encourage the development of independence and open up opportunities of making friends. Residents can participate in social events, sports and leisure activities, as well as engage with the larger community of the area.

Autism ashrams and guardian villages in Chennai, Hyderabad and Bangalore offer parents the opportunity to buy or rent accommodation for their children/adults with special needs, as well as for themselves. This gives them the security of living near their children, with the advantage of a structured environment offering assisted or independent living and educational, therapeutic and recreational activities. ALAP in Delhi and Arunima in Dehradun are two other models created by parents.

Where will adults with autism live when they’re on their own?

In Pakistan, Darul Sukoon in Karachi is the largest residential institution for adults with intellectual disabilities. It provides adequate care and support, but rarely allows family members to visit, as children are usually dumped here by their caregivers. Rising Sun and Hum Mashal-i-Rah in Lahore have also initiated residential facilities, but these are at a nascent stage. The Fountainhouse has set up a facility on the SOS model in Farooqabad for male and female patients with mental illnesses, but these do not offer opportunities for independent living or socialisation, which are necessary.

Roshni Gaon near Lahore comprises two community houses, arts and crafts workshops, a bakery and a farm. Around 30 ‘special friends’ live here with ‘house parents’, staff and volunteers. It is based on the Waldorf Steiner philosophy of ‘education for life’, with developmentally appropriate activities in sync with the natural rhythm of nature for residents, day-care students and volunteers. But, since the facility is not financially supported by parents, it is in poor condition.

Pakistani parents are lagging far behind their peers in the region in setting up residential facilities for their children. Parent groups, philanthropists and NGOs need to come together on a single platform to develop sustainable homes for autistic individuals. Recently, the ASD Welfare Trust organised a conference in Karachi and presented possible models along with their financial implications, organisational challenges and legal options.

To start a pilot project, parents would need to first agree on the concept, design, construction/rent, amenities, and funds for maintenance, utilities, food, staff and security salaries, as well as cost of academics and other services. They will need professional training in trust-building, financial and administrative management, budgeting and accounting. Based on the ALAP model, average costs of utilities, food and other expenses could be worked out for two to three years, and equal contributions by parents placed in a bank account to be run by the governing body. One hopes that parents here will take the initiative in this direction.

The UN theme for today’s World Autism Awareness Day is ‘Transformation: towards a neuro-inclusive world’. As far as slogans go, this seems timely, as there is increasing self-diagnoses among young adults with autism in developed countries who are struggling to be accepted for themselves as they are — autistic. But for persons with autism in poor countries faced with stigma and exclusion, this is a far cry from where they find themselves today — sans awareness, diagnosis, education, employment, housing — sans everything.

The writer is a former federal secretary.

Published in Dawn, April 2nd, 2023