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. 

Reflecting on Progress and Paving the Way Forward: Human Rights Day Insights from Esteemed PsySSA Leaders

“Three Decades of Respect for and Promotion of Human Rights” is South Africa’s (SA) theme for our Human Rights Day on 21 March, which bore witness to the Sharpeville massacre on this day in 1960.

“All Human Beings Are Born Free and Equal in Dignity and Rights” is the United Nations’ 74th anniversary slogan for International Human Rights Day on 10 December, celebrated in recognition of the adoption of the Universal Declaration of Human Rights on that day in 1948. The UN General Assembly crafted the International Convention on the Elimination of All Forms of Racial Discrimination as a result of the pass laws and the Sharpeville Massacre, with this day being recognised as the UN Day for the Elimination of Racial Discrimination in 1969!

PsySSA’s Constitution proclaims that “We acknowledge psychology’s historical complicity in supporting and perpetuating colonialism and the apartheid system” and that we are committed to:
“Transforming and redressing the silences in South African psychology to serve the needs and interests of all South Africa’s people;” and
“Actively striving for social justice, opposing policies that deny individuals or groups access to the material and psychological conditions necessary for optimal human development, and protesting any violations of basic human rights”.

PsySSA members have, since our inauguration in January 1994, been informed by the enduring legacy of colonialism and apartheid trauma, and the unfinished attempts to correct these since the advent of democracy. The scars left by the infamy and profound psychological impacts of the “Pass Laws” in our history reverberate through generations, impacting communities, groups, families and individuals in ways that society has not fully come to grips with.

SA’s exceptionalism, blinding partisanship and twisting of language and narrative to suit narrow sociopolitical ends are the heritage of our colonial and apartheid past. Yet, here we are, almost 30 years after hard-won democracy, having to constantly disabuse ourselves of outdated bias and prejudice that should have no place in any vibrant society, stripping individuals of their dignity, autonomy, and sense of belonging, festering otherness. Brutal past and poorly-managed current policies have inflicted deep wounds on the psyche, perpetuating cycles of fear, anger, and despair. For many, the trauma of our terrible past persists in the form of complex PTSD, ongoing psychic emergency, depression, anxiety, and other mental health challenges, on a persistent bed of poverty all around us. Poverty of both income and leadership.

Intergenerational transmission of these sequelae – without any mediation – ensures their perpetuation, continuing to shape the behaviour of most of our children, who are socialised by suffering. Our children – our future – bear the mantle of psychological scars embedded by told and untold stories, widening the Them vs Us divide across society, made worse by the silly season of hundreds of political parties promising us everything, while effectively seeking it for themselves.

As psychologists, we recognise the importance of addressing all of these issues in the small and larger ways that we can, with authenticity and willingness to learn and better our skill sets in the process of reconciling and tolerating differences, in community healing and educational initiatives, thus playing vital roles in fostering healing and resilience. By confronting the past with courage and compassion, we can create a future where human rights are upheld, and psychological health and wellbeing are grounded for all to ensure that our children may fully embrace our common humanity.

PSYSSA commemorates Human Rights Day on 21 March 2024.
In the 30th year of our democracy, Human Rights Day allows us to reflect on past atrocities, reflect on current human rights struggles and importantly, imagine a better world for all. Human rights declarations offer a set of universal ideas and values that speak to the rights of all people regardless of their race, sex, sexual orientation, religion, language, political views, and socioeconomic status. In South Africa, human rights are enshrined in the constitution (through the Bill of Rights) and underpin the core values of freedom, dignity, and equality. On Human Rights Day, we commemorate those who valiantly fought for our freedoms and human rights that are central to our democracy. We remember those who lost their lives during the Sharpeville massacre and other liberatory struggles leading to our democracy. We also acknowledge those who played a role in the formation of PsySSA and who continue to promote a holistic rights-based approach to mental health and psychological well-being.

However, the majority of South Africans continue to live in unsafe environments and are exposed to inferior quality education, elevated unemployment levels, food insecurity, violence, crime and inadequate healthcare, to name a few. We are in the grip of a service delivery crisis where water access, loadshedding and infrastructure collapse threaten to undermine human rights in profound ways. We also see the continuing attack on the rights of marginalised groups through epistemic and political violence. We stand with groups fighting for human rights. We also stand in solidarity with those fighting for human rights around the world in a time of increased insecurity, military action, and political instability. As we look forward, we also look to galvanise the rights of marginalised people and their knowledge systems, promote meaningful participation in our democracy, and develop the rights of the natural world alongside human rights in the hope of a more just planetary future.