This piece is part of the Autism and Culture series, in which researchers at the Faculty of Education carrying out studies relating to autism across the globe reflect on new challenges and exciting opportunities. This series was published in recognition of World Autism Awareness Week 2021, and you can view the rest of the series here:

Reflecting on some of my previous roles brings a smile to my face. As Special Educational Needs and Disability Coordinator (SENDCO) supporting autistic pre-school children, volunteering with the paediatric Dysphagia Team (Speech and Language Therapy) in clinical settings, or recently coaching an autistic college student in the UK online, I have always been inspired to do and be better in my practice. In my autism research in Ghana, I noted that Western criteria for autism spectrum disorder based on the International Statistical Classification of Diseases-11 (ICD-11) or the American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5) is frequently used to assess, diagnose and support autistic persons. It set me thinking about its effect on the practice and support of autistic persons.

Dr. Prithvi Perepa delivered a well-articulated presentation in February 2021 on Autism, Culture and Ethnicity touching on some of the issues I encountered when carrying out cross-cultural research in Ghana, or with persons of Ghanaian descent in the UK. For example, I observed that a child making direct eye contact with an adult is considered rude and disrespectful in Ghanaian culture. Yet, in some western societies like the UK, a child’s tendency to avoid eye contact may be considered as an early indicator of autism spectrum disorder (ASD). I quickly googled ‘cultural imperialism’, which I thought was an interesting perspective on autism and minority ethnic communities in the UK (Perepa, 2021).

In Ghana, literature about autism and disability often brings up the stigma, superstition, negative sociocultural and religious undertones associated with these subjects. Within the local communities, parents, caregivers and others require the ‘right’ knowledge to be able to access information, resources, services which can lead to assessment and diagnosis of their child or ward or an awareness of how to best support autistic persons. Training parents, caregivers and professionals, or supporting autistic children with the necessary tools to enable them to socially interact with mainstream society are some of the many options available to effect change. Although The Ghana Statistical Service and the Ghana – Revised Country Report present some data on disability in Ghana, it is neither autism specific nor current. Reliable and current statistics on autism appear to be virtually absent in local research literature.

Interestingly, the private sector appears to be forefront in the provision of a wide range of support and services to families (such as autism education, training {for parents, educators and religious bodies}, advocacy, counselling, home respite care, home programmes, donation of learning resources, health checks and more). However, since services are often uncoordinated or based in urban areas like the cities of Accra and Kumasi, there is a likelihood that many persons on the autism spectrum miss out on the benefits. Structured funding is virtually non-existent for most of these private sector service providers who have to plan their own funding models.

Exploring autism in Ghana and within Ghanaian communities in different contexts, I realise that I must rethink my blanket application of theories and re-evaluate the use of some of the diagnostic tools underpinned by Western cultures. Giving autistic persons a voice may mean exploring my research through a sociocultural lens, which may differ from that of Western norms but offer in-depth understandings of my phenomenon. My reflections about carrying out autism research in Ghana or with ethnically diverse communities are varied but hopeful.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub.

Hannah Ackom-Mensah is an Educational Doctorate student interested in improving conditions of autistic persons in Ghana and within Ghanaian communities in the UK. She organised and moderated the annual AutismDTgh events in 2018-2019 in Ghana bringing parents, autistic persons and other stakeholders into one space to discuss autism in Ghana and how best to improve conditions for persons with autism.

Posted by:fersacambridge

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