Caregivers’ burden

Published May 31, 2023
The writer, a former federal secretary, is CEO, ASD Welfare Trust.
The writer, a former federal secretary, is CEO, ASD Welfare Trust.

A STUDY on Maternal Stress and Health Quality of Life in Mothers with Special Needs Children, authored by Sara Jafree and Khadija Burhan of FCC University, Lahore, was published by Ataturk University recently. The study maintains that mothers of special needs children (SNC) face tremendous stress not only in accessing appropriate healthcare for their child, but also in negotiating economic, social and cultural support for themselves. The problem is exacerbated in conservative, including Muslim, societies where patriarchal attitudes, social stigma and superstition dominate the narrative and SNC and their families are shamed and excluded from the community.

The brunt of seeking medical treatment, education, therapies and vocational training, caring for the SNC physically and emotionally, and managing daily chores and family relations, falls on mothers. No wonder they feel exhausted, anxious and depressed, with low self-esteem and deteriorating health outcomes. The NIH in Maryland found that mothers of adolescents and adults with autism experienced “chronic stress comparable to combat soldiers”. Many of them admitted to having said at least once in their lives: “I will kill him/her and then kill myself.”

These women also experience insecurity due to the higher risk of abuse and violence of SNC. In many cases, family and in-laws are not supportive or are hostile, while conservative norms restrict their mobility. Compared to fathers, mothers of SNC have very few opportunities to mingle with the larger community and are deprived of leisure activities. The solitary burden they have to bear due to unsupportive government policies and community neglect is incredible.

With three per cent of children currently diagnosed with autism according to the Centre for Prevention of Diseases, US, and an increasing number of self-diagnosed adults, there is an urgent need to restructure social welfare services in Pakistan. The government with its limited resources needs the help of civil society organisations to spread awareness and acceptance of invisible disabilities like autism and ADHD. It is also imperative to develop responsive communities to play a supportive role.

Mothers with autistic children must be shown support.

The ASD Welfare Trust is working to spread awareness about autism and related conditions in small towns and villages in Pakistan. The goal is to empower women — mothers, teachers, lady health workers — with information as well as comfort. Autism awareness seminars are held in local hotels and marriage halls where lectures and discussions are followed by lunch, giving people a chance to intermingle.

Social engagement helps reduce class barriers, isolation and stigma, and creates opportunities for catharsis, psychoeducation and problem-solving. For parents, such activities are transformative as they find a new environment of empathy.

The approach focuses on groups and communities with little or no access to information, and that are vulnerable not only to the stigma attached to disability, but also to harmful practices such as recourse to faith healers and neglect of children and young adults, particularly girls with autism who are perceived as mad and socially and economically unproductive.

Social engagement improves communication, empathy and support for SNC and their families. Collective training programmes for mothers are needed to make them aware of the need for consistent engagement with their children, especially those with neurodivergent conditions. This is a neglected area as many mothers tend to leave everything to teachers and avoid personal responsibility.

In recent years, the concept of social role valorisation is being used by many social service delivery groups to train community leaders to support disabled and neurodivergent persons. According to SRV theory, everyone has the capacity to play a positive role in his/her personal life as well as that of society. The community needs to recognise these multiple roles and identities and add value to these through social role valorisation. The strategy is to mobilise and sensitise communities to evolve from devaluation of persons who are different from the rest, to ‘valuation’ and appreciation of their roles in different community settings.

It is the responsibility of the government to reinforce these initiatives through training of social welfare and health officials about the laws, rules and services related to SNC rights. Financial subsidies, free healthcare, hospitalisation, and maternal counselling must be given to SNC and their families. The government must engage with community notables, religious leaders, NGOs and CBOs and the media to create awareness and mobilise collective community support for their inclusion in educational, economic and sociocultural activities.

The writer, a former federal secretary, is CEO, ASD Welfare Trust.

Published in Dawn, May 31st, 2023

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