Supporting parents of children living with autism. Autism Spectrum Disorder (ASD) is a genetic condition which leads to abnormal brain development and function. There is a wealth of research undertaken to establish the cause of autism, but as yet there are no definite answers. There is agreement, however, that autism is no-one’s fault.
It is NOT a psychological or emotional disorder. It is NOT the result of bad parenting and children with ASD do NOT choose to “misbehave”. “Misbehaviours” are often reactions to the environment and are expressions of the difficulties they experience.
The incidence of ASD is on the increase worldwide with international statistics implying that it now affects 1 per 158 children under the age of 8 years. ASD affects 4 times as many boys than girls.
The Pietersburg Provincial Hospital occupational therapists and speech therapists took the initiative to organize an autism awareness and support day for parents of children living with ASD. The event took place on 03rd November 2015 at the Pietersburg Provincial Hospital in Polokwane. LINC partnered with the therapists as part of LINC’s objective to improve the management of Long-term Health Conditions (LHC), with funding from ELMA Philanthropies.
The event, attended by a group of around 15 parents, mainly mothers and female caregivers, highlighted the dire need to support and empower parents of children with ASD. An emotional day for many, but equally enlightening and informative. Guest speakers included Dr Robertson, the LINC Project Lead and Provincial Paediatrician for the Limpopo Provincial Clinical Specialist Team (PCST), who is both an expert and advocate for ASD in the province. Dr Robertson shared valuable information about the nature and as yet undetermined causes of autism, stressing the fact that autism is not caused by actions, or lack thereof, of parents, which is common perception amongst parents that are desperate to find out “what went wrong?”.
Ms Alice George from New Horizon School, one of only 3 schools in Limpopo that specifically caters for children with ASD, shared her personal journey as a parent raising a child with ASD. She too was inspired to empower herself with the necessary knowledge and skills to support her child’s development with the realization of the lack of educational opportunities for children with ASD in the province. She is now providing educational opportunities to other children with ASD, through New Horizon School. Her insights based on her own personal experiences were appreciated by parents in attendance, who for the better part feel overwhelmed and like their struggles are not shared by any other being.
It was also refreshing and inspiring to hear the story of a mother, Ms Nerina Barnard, with a child with Asperger Syndrome, which is one of 3 types of ASD. Her appreciation of the uniqueness and wonderfulness of her child was contagious and deviated from the often serious and negative light in which we discuss ASD.
Autism South Africa, a national NGO with its head quarters in Johannesburg, “aspires to achieving a society in which persons with Autism Spectrum Disorder (ASD) enjoy all the rights and opportunities to meet their needs and fulfil their potentials, throughout their lives, as loved and valued members of their families and communities”. The province is pleased that Autism South Africa has established an office in Limpopo. The local representative of Autism SA, Mr Peter Tjale, introduced the organization and its current programmes in the province, which include establishing support groups for parents of children with ASD. LINC will be working hand in hand with Autism SA in developing and rolling-out a capacity development programme for health professionals (nurses, doctors) and allied workers (therapists, psychologists, social workers) on the management of ASD. It is anticipated that the first group of health professionals and allied workers will be trained early 2016. This will be coupled with supporting the trained cadres to set up ASD clinics at their respective facilities.
Parents also appreciated the allied workers (occupational therapists, speech therapists, dieticians, psychologists) each sharing their scope of services and objectives in managing children with ASD, which are often not understood and thus not appreciated by parents, as critical a role each of these cadres play.
The event was without a doubt a success and unequivocally delineated the need for increased opportunities to bring parents and professionals together to openly and honestly deliberate on the challenges in managing and raising a child with ASD, as well as share available resources. It was an empowering experience for parents, which LINC intends leveraging in the province, in partnership with health professionals, allied workers and Autism SA.
