AUTISM – Do we really understand Autism? – The importance of listening to the Stories.

 by Dr Petro Erasmus

We have come a long way in the diagnosis of neurodevelopmental disorders. In 1911 the term “autism” was coined to describe what Paul Eugen Bleuler claimed to be the childhood version of schizophrenia. In the 1980’s Autism was recognized as a spectrum condition with wide-ranging degrees of impairment. According to Edelson (2019) there are still a high percentage of children who may not yet receive life-changing intervention as easily as possible since screening for autism is not readily available to everyone. In South Africa the ADOS is widely accepted as a reliable tool to diagnose Autism Spectrum Disorder (ASD). According to research one out of 36 children may be affected by Autism.

What research is also showing is that girls and children in low-income families are often overlooked. Boys are 5 times more likely to be diagnosed with ASD. Another challenge is that there is a growing number of young adults who suspect they might be neurodiverse but who are not always referred to the appropriate professionals to make such a diagnosis. They suspect a diagnosis of ASD but also receive a co-morbid diagnosis of attention deficit hyperactivity disorder (ADHD). This highlights the need for ongoing research to fully understand the impact of neurodiversity across developmental phases but also from a systemic approach. Research done at the North West University focused on how Autism is understood from a Tswana cultural perspective. Findings from these research projects are important for professionals who work with neuro-diverse children to understand not only the child but also the system that they function within.

Just as important as a diagnosis is to access resources, it is also important to plan for what resources must be made available for specific communities. There is a scarcity of healthcare professionals with an interest in neurodiversity and expertise to make diagnoses which in turn informs interventions to assist individual to reach their full potential.

South Africa is one of the most unequal societies in the world and this is also evident in the resources available to make the diagnosis and more importantly to start with therapeutic interventions.  Evidence-based practices emphasize the importance of a multi-disciplinary team of professionals which ideally should include a pediatrician, psychologist, occupational therapist, speech therapist, remedial therapist, teacher, nurse, and social worker – who work closely with the family to support and educate them and the child.

Neurodiversity should be on the agenda of every political party as one of their focus areas. To inform policy makers more research is needed to understand the needs of the individual but also the system within their function. We need to listen and record their stories to understand their journeys. So many professionals had the privilege to walk the journey with a neuro-diverse child and their family. They have learnt important lessons – but sadly these lessons are not recorded. At SEPSA and PSYSSA the aim is to advance SA psychology as a science and profession that promotes psychological praxis as relevant, proactive, and responsive to societal needs and well-being. SEPSA, a division of PSYSSA promotes research activities and in this special Autism month, we hope that more researchers will be motivated and begin to tell the stories of our neurodiverse children and their families.

Reference List:

Diagnosis and Screening for Autism: Past, Present, and Future – ARI

https://autism.org/diagnosis-screening-autism/

https://aut2know.co.za)

30 Facts to Know about Autism Spectrum Disorder (massgeneral.org)

https://www.massgeneral.org/children/autism/lurie-center/30-facts-to-know-about-autism-spectrum-disorder

CaSP would like to acknowledge the contribution and hard work of one of our students in the MA Clinical Psychology programme at UNISA. The infographic below is the hard work of Mr Wesley Pereira, a first year student in the MA Clinical Psychology programme at UNISA.