Delegates at the DDRC seminar held at UKZN.

The Development Disabilities Research Collaborative (DDRC), a College of Health Sciences research group affiliated to Autism Speaks in the United States, held a seminar at UKZN to highlight research in the fields of Autism Spectrum Disorders (ASD).

The underlying themes of the seminar were based on the position paper of the DDRC and the South African Chapter of the Global Autism Public Health initiative, namely: community awareness and empowerment; research, education and training, developing an evidence base, conducting ethnographic studies in the South African context, the development of valid instrumentation for assessment and the training of professionals to provide specialised services to individuals with ASD.

Professor Rob Slotow, Deputy Vice-Chancellor and Head of the College, emphasised the importance of collaborative research among the disciplines to ensure expansion of the professional capacity to deal with challenges holistically.

Dr Meera Chhagan of UKZN’s Department of Paediatrics presented on the Asenze study being conducted by UKZN academics from Paediatrics, Psychiatry, Speech Language Pathology, Audiology, Occupational Therapy, Psychology and non-governmental organisations. The study focuses on the health and psychosocial needs of children with developmental disabilities in a time of HIV and is taking place in the outer west districts of eThekwini which includes five tribal areas with a predominantly impoverished population.

The initial phase of the study assessed 14 425 households for possible developmental disorders. Using the 10 questions screening test for monitoring child disability, the researchers found 1 771 children between the ages of four-six who screened positively.

The prevalence of serious disability was found in 45 percent of the group.

Global statistics indicate a positivity rate of between three-48 percent, revealing that the prevalence of serious disability in this age group is “quite high” in KwaZulu-Natal. The study also found that the primary caregiver of the children varied with 63.9 percent living with their mothers, 22 percent with their grandmothers and 15 percent with a relative.

It was also indicated that 73 percent of the caregivers were HIV negative whilst 27 percent were positive.

Among the care givers, 14 percent reported alcohol use in the categories of hazardous, harmful or dependent use; with 32 percent screening positive for mental health symptoms.  The findings of the study revealed a population in dire need of assistance.

Global studies indicate that without early intervention, these children and eventually adults are unable to maximize their functional capacity.

Also highlighted was a study by Dr Lawrence Mubaiwa, UKZN’s Paediatric Neurologist based at the Inkosi Albert Luthuli Central Hospital (IALCH). The study was a retrospective analysis of 2 100 patients being attended to at IALCH’s Paediatric Neurology Unit.

Mubaiwa found that pervasive developmental disorders were evident in between 10-22 per 1000 patients seen at the Unit. These patients were predominantly male with 60 percent completely dependent on others for assistance. The majority of the children under the age of five had no speech and an IQ of less than 60 combined with epilepsy.

Thirty percent of the patients were regressive, 14 percent had no communication, 65 percent communicated through telegraphic sentences and 14 percent communicated through infantile polysyllabic babbling. Up to 50 percent of the children were on some type of medication whilst the majority was first assessed by an occupational therapist.

Dr Sibusiso Radebe, KwaZulu-Natal Special Needs Directorate in the Department of Education, said there were 71 special needs schools and 81 mainstream schools in the province being developed as full service schools. The disabled learner enrolment was 16 717 in special needs schools and 26 000 in mainstream schools.

Radebe said the Department had also spent R4 million on assistive devices and a further R9, 529 million would be spent on learner teacher support material. A further R138 million would be spent to improve access to education for learners with disabilities.

Other guest speakers at the seminar included Dr Enver Karim of UKZN’s Department of Psychiatry, Dr Nola Chambers from the Asenze study, Ms Kerry Wallace of PolkaSpot and Mrs Lisa Aziz of Action in Autism.