Ugandan Court Ruling: A glimmer of hope for children with Autism Spectrum Disorder (ASD)

By Emmanuel, Adetokunbo, and Kristie

Introduction

Autism is often known as Autism Spectrum Disorder (ASD), a broad terminology for a range of diseases involving brain development that has lifelong consequences (WHO, 2022). It may appear in early childhood or later in adulthood and is often marked by communication and social skills difficulties. Children on the autism spectrum might have difficulties developing interpersonal relationships, challenges with communication, may erratically switch from one activity to the next, and lack the ability to concentrate or sleep (Lord et al., 2018; WHO, 2022). In addition, children on the autism spectrum may struggle to respond to their names by their first birthday, and continue to fall behind in their development. Children with ASD might find it challenging to socialise and over time this reduces their educational attainment and employment prospects. A recent court hearing reveals the neglect facing people with ASD in Uganda.

© Photo by Ketut Subiyanto

Context: The Autism Spectrum in Uganda

Globally, an estimated 100 in 10,000 persons and 1 in 100 children have autism (Zeidan et al., 2022). Autism is more common in males than females — about 4.2 males with autism for every female (ibid). Unfortunately, there is a paucity of available and reliable data on the prevalence of autism in low- and middle-income countries, including Uganda (Elsabbagh et al., 2012; WHO, 2022; Zeidan et al., 2022). However, based on the prevalence of 100 per 10,000 and the male-to-female ratio, about 460,000 persons (386,400 males and 73,600 females) and 240,000 children aged 0–14 years have ASD in Uganda.

Communities and families with autistic children in Uganda do not have the required knowledge and understanding of autism. Namuli et al. (2020) discovered that health care practitioners, particularly psychiatric nurses and medical social workers, have little understanding of childhood ASD. Autism in children is often misdiagnosed as malaria or not diagnosed at all (Nassaka, 2022; Wesaka & Kigongo, 2022). This lack of understanding affects their development, health, and well-being as well as the quality of life of caregivers in Uganda (Namuli et al., 2020; Sadoo et tal., 2022). Consequently, many children with ASD remain undetected and are denied the necessary treatment and support (Zeidan et al., 2022). Similarly, parents lack the necessary skills and support and feel terrible about not being able to help their children.

In Uganda, persons with ASD, particularly children endure discrimination, stigma and prejudice, including denial of adequate health services and treatment and insufficient opportunities to participate effectively in their communities. These discriminations are partly reflected in some communities’ derogatory language to describe persons or children on the autism spectrum. Some of these words are “mulalu” which in Luganda is a loose definition of “mad or stubborn”, or “kasilu” which describes an autistic person as one who is “lacking a few brain wires or deaf and dumb.” A typical example of autism-related stigma includes communities accusing the parents of children with ASD of exploitation of their children for rituals to get rich (Nassaka, 2022).

Normative framework relating to the right to health and early identification in Uganda

Uganda ratified the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) in 2008. As a signatory to the CRPD, Uganda confirms its commitment to ensuring everyone, including children with ASD, have the right to the best possible physical and mental health. Specifically, Article 25 of the CRPD outlines the obligation of Uganda as a signatory to ensure that persons with disabilities enjoy the highest attainable standard of health without discrimination based on disability. As a signatory to the CRPD, Uganda is mandated to take all necessary steps to ensure access for persons with disabilities to health services, including health-related rehabilitation. Further, Article 25(b) requires that States Parties provide:

“those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimise and prevent further disabilities, including among children.”

This provision is significant as it outlines Uganda’s obligations with respect to the right to health, particularly early identification and intervention. In addition, this provision is buttressed by commitments in the Convention on the Rights of the Child (CRC), the United Nations Sustainable Development Goals (SDG) and the Agenda 2030, which outlines critical rights, including respect for dignity, freedom of choice and independence, non-discrimination, full participation and inclusion in society, and acceptance of persons with disabilities as part of human diversity. The disability-inclusive SDG 4 guarantees disability-inclusive development — including improving social inclusion and access to services — such as disability assessment and referrals for persons with disabilities.

Uganda has made progress in CRPD compliance and has developed country level-specific regulatory frameworks. These frameworks include the 1995 Constitution of the Republic of Uganda (as amended in 2018); the 2020 Persons with Disability Act; the 2018 Mental Health Act; the 2016 Children (amendment) Act; the 2006 National Policy on Disability; The National Child Policy 2020; and the 2017 Child and Adolescent Mental Health Policy Guidelines. These legislative frameworks reflect the CRC and CRPD provisions on selected areas of rights for children with disabilities. For instance, the 2016 Children Act puts into effect the Constitutional provisions on children — and is enacted to provide for the care, protection and maintenance of children in Uganda (GoU, 2016). Notably, it emphasises the rights of every child in Uganda, including being free from discrimination and access to information, which can help guardians or parents to make informed decisions on the well-being of children.

The 2018 Mental Health Act also supports treatment for mental illness for all patients at primary health facilities. The 2020 Persons with Disability Act reinforces the Children Act by outlining the rights of children with disabilities to inclusive education — which requires early assessment and treatment and non-discrimination of children with disabilities at health care units. The Persons with Disabilities Act requires the Government to establish a system of early identification of disabilities and strengthen existing systems to minimise disabilities among children. Additionally, Section 9 of the Children Act mandates parents of children with disabilities and the State to take the necessary steps to ensure early assessment of disabilities and provide appropriate treatment, including access to facilities for rehabilitation. The goal of the 2017 Child and Adolescent Mental Health Policy Guidelines is to promote mental health and augment the knowledge, understanding and involvement of families and key stakeholders on the mental disorders in children and adolescents. However, there is an implementation gap between policy and practice especially in childhood disability interventions (Ministry of Gender, Labour and Social Development (MGLSD), 2020; UNICEF-Uganda, 2019).

Case study: The outcome of CEHURD and Ors vs Buyende District Local Government and Anor HCCS

When Perez, an autistic child, was four, his family had limited knowledge about his condition. Perez was restless, constantly crying and lacked sleep. As a result, his parents sought medical advice from various hospitals to help understand his condition and provide him with the necessary support. However, all their efforts yielded nothing but a misdiagnosis of the condition as malaria. Finally, when he was 12 years he received the correct diagnosis of autism. Consequently, in 2017, Perez’s family and the Centre for Health, Human Rights and Development (CEHURD) issued a complaint against the Buyende District Local Government and the Attorney General in the High Court of Uganda at Jinja. The complainants reported the failure of the Government through the Buyende District Local Government to provide essential outreach services and early detection services to Perez. Following this, on Mar 10 2022, the Jinja High Court of Uganda, through Justice Winifred, found the government of Uganda liable for violating Perez’s rights. These violations were due to the Government’s inability to provide the required knowledge and the disability assessment and referral system which could have helped to improve Perez’s development, health, and well-being (Wesaka & Kigongo, 2022).

This case demonstrates a gross violation of children’s rights, particularly the rights of children with ASD. In her landmark ruling, Justice Winifred observed that mental health disorders, including ASD in children, are not adequately prioritised and regarded as critical health and human rights issues in Uganda. Notably, the outcome shows three critical areas of importance to the disability-inclusive development agenda, especially in Uganda.

• Firstly, it reflects the importance of a functioning early detection, diagnosis, and referral system.
• Secondly, this ruling sheds light on duty bearers’ lack of accountability for the realisation of the rights of children with disabilities. Thus, it reinforces the need for the government to re-examine its commitment to Article 25(b) of the CRPD and the Ugandan regulatory framework.
• Finally, the ruling has highlighted the Ugandan government’s need to recognise and prioritise mental health, especially ASD in children, as a human right.

Moreover, the case is a warning to other governments about the neglect of the rights of children with disabilities. Usually, persons with disabilities struggle to exercise their legal rights due to the barriers in the policy, legal and policy sector that exclude persons with disabilities from attaining their legal rights. There is a paucity of available and reliable data on (un)successful cases where the courts (or tribunals) in Uganda have ruled on issue(s) relating to disability (Network of Public Interest Lawyers, 2017; Oyaro, 2014). Citizens with disabilities should not need to take their government to court in order to have their rights fulfilled. Imagine what would happen if more of them did.

Recommendations

While the government of Uganda has enacted various legal frameworks to advance the rights of persons with disabilities — especially children with disabilities, much is still desired. Includovate welcomes the CEHURD and Ors court ruling and agrees that the Government of Uganda should provide persons with neurological disorders sufficient primary health care. We make the following recommendations:

• Implementation of court ruling: It is crucial that the Government shows strong political will to ensure that children with disabilities and particularly ASD are adequately assessed to ensure timely interventions. One way to show political will is to ensure that the court directives in the CEHURD and Ors vs Buyende District Local Government and Anor HCCS are promptly implemented.
• Early detection and care: The Government of Uganda should provide persons with neurological disorders sufficient primary health care. This includes improving disability assessments and referral systems, conducting knowledge gap assessments of health care providers and building the capacity of primary health care workers. If the government of Uganda does not have sufficient funds then they should appeal to the various donors supporting the health care system.
• Review of child rights-related frameworks: Re-examine the Ugandan regulatory framework and provisions about the responsibility of duty-bearers to guarantee the recognised rights of children with disabilities — especially children with ASD.
• Intensify ASD awareness and advocacy: The existence of autism stigma and prejudice is attributable to a lack of awareness about autism among some policymakers, communities and families. As a result, the government and development partners must promote context-specific campaigns and autism awareness raising. Early detection among communities and policymakers must be emphasised in order to raise public understanding and create a public health response to autism.
• Use of reliable and accurate data for decision-making: Prevalence estimates of autism are essential for informing public policy, raising awareness, and developing research priorities (Zeidan et al., 2022). The government should gather and use accurate and reliable data on autistic persons, including children. Conducting a disability monograph of children with disabilities in Uganda is advised.

Conclusions

Uganda ratified the CRPD, CRC, the United Nations Sustainable Development Goals (SDG) and the Agenda 2030, which requires them to have inclusive and sustainable development. This blog highlights the gaps in Uganda’s provision of health care for children with ASD. A number of reforms are required including, changing discriminatory attitudes towards autistic children in Uganda and the need for early detection, diagnosis, and intervention for ASD. The Ugandan Government and all key stakeholders are urged to pay attention to obligations under the CRPD and their commitment to the SDGs. Children with ASD should have the same rights to healthcare as other citizens.

About the Author:

Emmanuel Mensah

A gender and human rights activist and positive masculinity expert. Emmanuel has extensive experience in Social Norms Change for Gender Equality and Women Empowerment (GEWE) and Positive Masculinities to End Violence Against Women (EVAW). Has worked on various GBV and #HeForShe programs with the UN Women, Uganda and Uganda Police Child Family and Child Protection Unit and provided technical support and guidance to develop standardised awareness raising materials on GBV prevention, mitigation and associated risks, including promotion of equitable gender norms and positive behaviour change towards women’s and girls’ protection from GBV, positive masculinity and the importance of men’s and boys’ role in supporting GBV prevention and mitigation.

Includovate is a feminist research incubator that “walks the talk”. Includovate is an Australian social enterprise consisting of a consulting firm and research incubator that designs solutions for gender equality and social inclusion. Its mission is to incubate transformative and inclusive solutions for measuring, studying, and changing discriminatory norms that lead to poverty, inequality, and injustice. To know more about us at Includovate, follow our social media: @includovate, LinkedIn, Facebook, Instagram.

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