AUTISM and intellectual/developmental disorders (I/DD) are often seen as a childhood condition, and the focus is mostly on diagnosis and intervention therapies. However, these disabilities are lifelong, requiring long-term support structures such as independent living facilities, community acceptance, training opportunities and employment options throughout the lifespan of an individual. In many countries including Pakistan, autistic and I/DD adolescents over 17 years are not accepted by educational and vocational institutions, and are at a standstill when they cross the threshold of childhood.
Today, one in 44 children is being diagnosed with autism according to the Centres for Disease Control in Washington. Based on this data, it is estimated that there are 1.8 million children under 18 years in Pakistan who could be diagnosed with autism, and another 2m with I/DD. There is no data on adults with these disabilities anywhere in the world.
Since the last 15 years, we have been celebrating World Autism Awareness Day (April 2) to create awareness about neuro-divergent individuals. It is now recognised that autism is a spectrum of difficulties ranging from poor social interaction, speech impairments and sensory issues to extraordinary strengths in math, music, cooking, drawing, painting, mechanical and software engineering, etc. It is time that the government and civil society in Pakistan start planning and setting well-defined goals and strategies for inclusion of adults with autism and I/DD in mainstream economic activities.
The concept of inclusion is based on the fundamental right to work laid down in Article 18 of the Constitution, and subsequent federal and provincial governments’ legislations pertaining to the rights and empowerment of persons with disabilities. Article 27 of the UN Convention on the Rights of Persons with Disabilities recognises “the right of persons with disabilities to work, on an equal basis with others”, and in a “work environment that is open, inclusive and accessible to persons with disabilities”.
Today, one in 44 children is being diagnosed with autism.
In recent years, autism advocacy groups have been meeting key stakeholders, including adults with autism, vocational trainers and potential employers to identify barriers relating to their inclusion in full employment. Many professional job-placement agencies abroad are launching inclusive employment programmes to train and accommodate adults with autism and I/DD to identify and utilise their potential. Options ranging from sheltered and assisted employment and group-supported community internships to talent-supported, customised and integrated employment are being discussed in HR policymaking circles.
In Pakistan, community activities could include volunteer work such as that being carried out by non-profit organisations including the Aga Khan and Edhi Foundations, the Network of Organisations Working for Persons With Disabilities, the Saylani Trust, Roshni Gaon and others: such voluntary work and internships may support career exploration eventually leading to paid positions. However, as Nicole Leblanc, a leading self-advocate for autism, put it: “Unfortunately many people with disabilities grow up in the shadows of ‘low expectation syndrome’. Our hopes and dreams can be stripped away by doctors, teachers, parents and providers who have preconceived notions about what we are capable of doing.”
This aspect of ‘accommodating’ persons with autism and I/DD was highlighted at a conference in Karachi, organised by the ASD Welfare Trust, last week. CSOs stressed the need for the corporate sector to revamp their HR policies to include and train persons with autism and I/DD. They also pointed out that mainstream vocational training institutions had not modified their curricula despite enlightened legislation. Potential employers stressed that proper training, mentoring and job coaching were of primary importance, while others pointed out problems relating to accessibility, transport, negative attitudes of co-workers and safety of employees in the workplace.
There is a gap between what skills an employer needs and what are available in the market. For instance, banks, insurance and software companies have failed to develop spaces where persons with autism and I/DD can contribute and flourish as is being done by Microsoft and others. We need professionals and employment specialists in the private and corporate sectors to map out strategies to help create meaningful jobs.
Many workers with autism and I/DD require some level of predictability — to know what is going to happen and when. Therefore, good job matches for these individuals are often ones in which there is a high degree of structure, predictability and routine. With proper exploration, job matching and mentoring, they can be competitively employed in work that is not just fulfilling quota requirements, but are also utilising their innate potential talents.
The writer is a former federal secretary.
Published in Dawn, April 2nd, 2022