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28 April 2020 | Story Andre Damons | Photo Supplied
During a recent training session at the ASC. From the left, front: Marisa Viljoen and Noleen Seris; back: Prof Lauren Franz, Dr Nokhutula Shabalala, and Dr David Griessel (Unit Director).

Greta Thunberg, the 17-year-old climate and environmental activist who identifies as autistic, calls her autism a superpower. And it might just be this superpower that saves the world. 

Celebrating the strengths of autism
With April being Autism Month, it is a good time to celebrate the strengths of autism, says Dr David Griessel, Director of the University of the Free State Autism Support Centre (ASC), and a registered developmental paediatrician in the UFS Department of Paediatrics and Child Health. This includes a no-nonsense, direct thinking, and ‘outside the box’ way of looking at life, which is not mired in wishful thinking and false hope.

The Autism Support Centre was initiated by Dr Griessel, who has a special interest in neonatal intensive care, perinatal care, neuro-developmental evaluation in high-risk babies, neuro-developmental behavioural problems and learning difficulties, autism spectrum disorders, and the ethics of neuro-disability. The centre is under the auspices of the ‘Make the first 1 000 days count’ project and is located on the UFS Bloemfontein Campus.

According to Dr Griessel, the current pandemic is asking questions of us as society. “Questions about what is really important to us as humans. Whether we can really keep on expanding and consuming as if tomorrow does not exist. The inconvenient fact is that our encroachment on the habitat of wild animals bring us in contact with wild animals, and although bats are very resistant to viruses, we are not,” says Dr Griessel.  

Dr Griessel says Greta does not care about social codes, and directly asks of us: “How dare you steal my dreams and my childhood with your empty words; our homes are on fire.”

Children with autism need significant support 
“If we, as so-called neuro-typical parents, caregivers, and society can accept and support them, they add to the richness and complexity of life. The first person described in the medical literature, Donald T, had a full and eventful life, but financial support and a small community who had his back, were real enablers!”

“In this time of lockdown, my thoughts go out to parents and the challenges they may face at home. There are wonderful resources available from Autism SA, which may help them navigate these uncertain times. When we listen to Greta, a thought springs up – maybe autism will save the world.” 

A first in Africa
The Early Start Denver Model (ESDM), a first in Africa, was recently presented at the ASC and is now used to support therapists, caregivers, and patients with autism and related disorders.

This model is one of the so-called naturalistic developmental behavioural interventions, which attempts to change the core features of autism. They all share the idea that normal developmental forces should drive the process of interaction between caregiver and child; this has been  to be effective in different controlled trials.

Three registered ESDM therapists, together with Prof Lauren Franz from Duke University in North Carolina as mentor, visited Bloemfontein at the end of 2019 to become accredited trainers. Colleagues from Tanzania as well as attendees from all over South Africa have visited the centre before.

The unit is also being used by two local therapists, Elize van Rensburg and Angela Correia, to achieve reliability in this therapy. Furthermore, the unit is used as a therapy centre and for ADOS (Autism Diagnostic Observation Schedule) evaluations – the gold standard for diagnosis.

 

An inside view of the Autism Support Centre on the Bloemfontein Campus of the University of the Free State (UFS).

Supporting families as caregiversAutism South Africa has adapted a guide from the Frank Porter Graham Child Development Institute at the University of North Carolina on the support of individuals with autism through uncertain times.

Individuals with autism may need additional support to process the news and adapt to the many changes.  This population may face additional challenges related to comprehension, communication, difficulty understanding abstract language, an insistence on sameness, and a greater likelihood of anxiety and depression – all of which may be exacerbated during this stressful period. 

The following seven support strategies are designed to meet the unique needs of individuals with autism during this period of uncertainty.  

• Supporting understanding
• Offering opportunities for expression
• Prioritising coping and calming skills
• Maintaining routines
• Building new routines
• Fostering connections (from a distance)
• Being aware of changing behaviours

News Archive

UFS cardiac team leading with project
2017-05-31

 Description: Cardiac team read more Tags: Cardiac team read more

Prof Peter Schultheiss of the Charité University in Berlin,
Germany, visited the Robert WM Frater Centre for
Cardiovascular Research at the UFS for a study regarding
cardiomyopathy, a significant cause of fatal heart failure
among Africans. From the left are Dr Glen Taylor,
Dr Danie Buys, Prof Makoali Makatoko,
Prof Schultheiss and Prof Francis Smit.
Photo: Rulanzen Martin

A team of cardiac doctors associated with the Robert WM Frater Cardiovascular Research Centre at the University of the Free State’s (UFS) Faculty of Health Sciences has commenced with a pioneering research project regarding idiopathic dilating cardiomyopathy.  

An Afrocentric research focus
Prof Francis Smit, Head of the Department of Cardiothoracic Surgery at the UFS and Head of the Frater Centre, describes dilating cardiomyopathy as a heart muscle disease that is quite common, particularly among people of African descent. The disease weakens the heart muscle, which in turn leads to heart failure.

“To date there is no curable treatment for this condition and 50% of patients that have shown heart failure, died within a period of five years. The causes of this condition have been unknown in the majority of patients. But over the past few years major strides have been made where virus infections of the heart muscle or myocarditis have been identified as a possible underlying cause. Various genetic diseases are also linked to it,” says Prof Smit.

International collaborations ensure success
According to Prof Smit, the project is being run in conjunction with Prof Heinz-Peter Schultheiss of the Charité University and the Institute for Cardiac Diagnostics and Therapy in Berlin, Germany.

“We have been working on the project over the past 18 months and I have twice visited Prof Schultheiss in Germany. He is now visiting us in Bloemfontein. We have established a collaborative project focused on patients in central South Africa”.
Prof Schultheiss is a world leader regarding the diagnosis, pathology and treatment of dilating cardiomyopathy, says Prof Smit.

“He brings a lifetime of research experience to Bloemfontein and is internationally renowned as the father of myocardial or heart muscle biopsies.

“His pioneering work on the discipline has led to diagnostic accuracy that has induced purposeful and personalised treatment of dilating cardiomyopathy and has brought about dramatic changes in some subsets of patients’ life expectancy and their cure.”

Solving problems close to home
According to Prof Mokoali Makatoko, Head of the Department of Cardiology, there are more than 1500 new cases of heart failure identified annually at the Universitas Academic Hospital, of which approximately 30% are attributed to cardiomyopathy. “With the use of endomyocardial biopsies the team hopes to treat viruses unique to Southern Africa as well as other underlying causes of dilating cardiomyopathy.”

Prof Stephen Brown, Head of Paediatric Cardiology at the Universitas Academic Hospital, says children suffering from this disease never reach a mature age and those under his supervision will also be undergoing these tests. Various other departments at the UFS will also participate in this project. Profs Makatoko and Brown did the first four endomyocardial biopsies under the management of Prof Schultheiss during the past week. The results will be available in the coming weeks after which the project will be officially launched and patient recruitment will start in earnest.

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