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Autism and Developmental Disabilities highlighted at International Conference

Professor Ezra Susser, Dr Andy Shih, Mr Michael Rosanoff and Ms Brigitte Kobenan

Local and international stakeholders gathered at UKZN’s Westville campus on November 16 to 17 to add their voice to a plan of action aimed at addressing autism and other development disabilities in South Africa.

The international conference, Autism and Development Disabilities: The South African Context was an initiative of UKZN’s College of Health Sciences in collaboration with Autism Speaks.  Autism Speaks is a global advocacy organisation whose core purpose is creating awareness on autism; funding research aimed at treating the disorder; and building support mechanisms for families affected by autism.   Autism Speaks defines autism as  ”a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioural challenges”. The Conference was aimed at attaining a spectrum of informed views on autism and developmental disabilities to draw up a white paper and launch the South African Chapter of the Global Autism Public Health Initiative (GAPHI).

Guest speakers who joined UKZN academics in addressing wide ranging issues relating to autism included:  Professor Ezra Susser, a Professor of Psychiatry and Epidemiology at Mailman School of Public Health University of Columbia and New York State Psychiatric Institute; the First Lady of Lesotho, Mrs Mathato Sebonoagn Mosisilli; Ms Jill Stacey, the National Director of Autism South Africa; Ms Jazel Peterzell, the Director of Autism Action South Africa; Professor Graham Thornicroft, Professor of Community Psychiatry and the Head of the Multi-Disciplinary Health Service and Population Research Department at the Institute of Psychiatry, Kings College in London;  representatives from the ministries of health and basic education; and a host of academics from universities around South Africa.

Welcoming guests were Professor Nelson Ijumba, the Deputy Vice Chancellor of Research and Dr Andy Shih, the Vice President of Scientific Affairs at Autism Speaks.  Thanking delegates for their participation in a conference he described as a “noble cause”, Professor Ijumba said the conference should facilitate the transfer of knowledge between academics who undertook research aimed at informing policy on autism and hoped discussions and presentations would benefit the overall objective.

Dr Shih said it was a privilege to visit South Africa and learn first hand about autism in this country through families affected by the disorder and academics who have undertaken research in the field. He added that there was no single solution to the complex disorder of autism, and it should be a collaborative effort of academics, government officials, affected families and other stakeholders who determined priorities in addressing the disorder.  “South Africans have worked diligently to advance the rights of people with autism nationwide, and have supported diagnosis and education. GAPHI-South Africa will assist in a new focus on autism research and training,” stated Dr Shih in a press statement.

Contextualizing the South African experience of parents with autistic children were three mothers who presented emotional accounts of what it meant being mothers to children with autism; the challenges in diagnosing and seeking therapy for their children; and the limited support mechanisms for the treatment of the disorder. 

The Director of Autism Action South Africa, Ms Jazel Peterzell , also mother to a nine year old daughter with autism said a point she often made  to mothers whose children have been diagnosed with autism was “…that it’s okay to grieve for a child who has autism because it hurts.  Learn about what your child has because it’s not going to go away. It’s an emotional and personal journey that will get better.”

In her role as Director of Autism Action South Africa, Ms Peterzell advocated for the early screening and diagnosis of children with autism which she said should be between 18 months to two years old. The importance of the empowerment of parents whose children were autistic was emphasised by Ms Peterzell and other mothers. She said it was important for parents to educate themselves about the severity of their own child’s condition (autism), to understand and act against challenges facing their autistic children, so that they were on par with health professionals when discussing their child’s needs. Dilemma’s facing autistic parents according to Ms Peterzell were the shortage of trained professionals to attend to their autistic children.

Professor Ezra Susser one of the keynote presenters who addressed the topic: Autism and Social Justice said autism advocacy which was the most powerful mental health movement in the United States could play a key role in the provision of services for other mental health conditions in South Africa and other countries. His talk touched on the existing global inequities in mental health care delivery in lower income countries like China and Brazil for example, that have fewer epidemiological studies and a scarcity of health professionals to deal with such disorders.  He suggested that activists at a grassroots level could play a significant role in advocating for the provision of services for autism and other developmental disabilities in South Africa.

Delegates including health professionals, academics, special needs teachers and parents of autistic children participated in a stakeholder summit during the Conference aimed at mapping out a research agenda for the Developmental Disabilities Research Collaborative (DDRC)).  According to Professor Sabiha Essack, the Dean of the Faculty of Health Sciences, the main purpose of the DDRC was to undertake research that informed best practice and improved the quality of treatment in the area of development disabilities, including autism. 

Stakeholders offered their suggestions in the areas of research, information and advocacy, training and professional development, interdepartmental collaborations; early interventions and diagnostic tools; and School Services for Autism Spectrum Disorders (ASD). Documented suggestions included: the need for research on the cultural responses to mental health diseases in South Africa; creating a central database informing all stakeholders on matters relating to ASD;  the provision of short training progammes for community practitioners to assist them identify the early signs of autism among children; the availability of autism screening tools in official South African languages other than English;  and the provision of assistant therapists for teachers who teach children with special needs.

Mothers of autistic children address delegates at the international autism conference hosts by the College of Health Sciences and Autism Speaks.



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