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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

Media: Sunday Times
2006-05-20

Sunday Times, 4 June 2006

True leadership may mean admitting disunity
 

In this edited extract from the inaugural King Moshoeshoe Memorial Lecture at the University of the Free State, Professor Njabulo S Ndebele explores the leadership challenges facing South Africa

RECENT events have created a sense that we are undergoing a serious crisis of leadership in our new democracy. An increasing number of highly intelligent, sensitive and committed South Africans, across class, racial and cultural spectrums, confess to feeling uncertain and vulnerable as never before since 1994.

When indomitable optimists confess to having a sense of things unhinging, the misery of anxiety spreads. We have the sense that events are spiralling out of control and that no one among the leadership of the country seems to have a definitive handle on things.

There can be nothing more debilitating than a generalised and undefined sense of anxiety in the body politic. It breeds conspiracies and fear.

There is an impression that a very complex society has developed, in the last few years, a rather simple, centralised governance mechanism in the hope that delivery can be better and more quickly driven. The complexity of governance then gets located within a single structure of authority rather than in the devolved structures envisaged in the Constitution, which should interact with one another continuously, and in response to their specific settings, to achieve defined goals. Collapse in a single structure of authority, because there is no robust backup, can be catastrophic.

The autonomy of devolved structures presents itself as an impediment only when visionary cohesion collapses. Where such cohesion is strong, the impediment is only illusory, particularly when it encourages healthy competition, for example, among the provinces, or where a province develops a character that is not necessarily autonomous politically but rather distinctive and a special source of regional pride. Such competition brings vibrancy to the country. It does not necessarily challenge the centre.

Devolved autonomy is vital in the interests of sustainable governance. The failure of various structures to actualise their constitutionally defined roles should not be attributed to the failure of the prescribed governance mechanism. It is too early to say that what we have has not worked. The only viable corrective will be in our ability to be robust in identifying the problems and dealing with them concertedly.

We have never had social cohesion in South Africa — certainly not since the Natives’ Land Act of 1913. What we definitely have had over the decades is a mobilising vision. Could it be that the mobilising vision, mistaken for social cohesion, is cracking under the weight of the reality and extent of social reconstruction, and that the legitimate framework for debating these problems is collapsing? If that is so, are we witnessing a cumulative failure of leadership?

I am making a descriptive rather than an evaluative inquiry. I do not believe that there is any single entity to be blamed. It is simply that we may be a country in search of another line of approach. What will it be?

I would like to suggest two avenues of approach — an inclusive model and a counter-intuitive model of leadership.

In an inclusive approach, leadership is exercised not only by those who have been put in some position of power to steer an organisation or institution. Leadership is what all of us do when we express, sincerely, our deepest feelings and thoughts; when we do our work, whatever it is, with passion and integrity.

Counter-intuitive leadership lies in the ability of leaders to read a problematic situation, assess probable outcomes and then recognise that those outcomes will only compound the problem. Genuine leadership, in this sense, requires going against probability in seeking unexpected outcomes. That’s what happened when we avoided a civil war and ended up with an “unexpected” democracy.

Right now, we may very well hear desperate calls for unity, when the counter-intuitive imperative would be to acknowledge disunity. A declaration of unity where it manifestly does not appear to exist will fail to reassure.

Many within the “broad alliance” might have the view that the mobilising vision of old may have transformed into a strategy of executive steering with a disposition towards an expectation of compliance. No matter how compelling the reasons for that tendency, it may be seen as part of a cumulative process in which popular notions of democratic governance are apparently undermined and devalued; and where public uncertainty in the midst of seeming crisis induces fear which could freeze public thinking at a time when more voices ought to be heard.

Could it be that part of the problem is that we are unable to deal with the notion of opposition? We are horrified that any of us could be seen to have become “the opposition”. The word has been demonised. In reality, it is time we began to anticipate the arrival of a moment when there is no longer a single, overwhelmingly dominant political force as is currently the case. Such is the course of history. The measure of the maturity of the current political environment will be in how it can create conditions that anticipate that moment rather than seek to prevent it. We see here once more the essential creativity of the counter-intuitive imperative.

This is the formidable challenge of a popular post-apartheid political movement. Can it conceptually anticipate a future when it is no longer overwhelmingly in control, in the form in which it is currently, and resist, counter-intuitively, the temptation to prevent such an eventuality? Successfully resisting such an option would enable its current vision and its ultimate legacy to our country to manifest in different articulations, which then contend for social influence. In this way, the vision never really dies; it simply evolves into higher, more complex forms of itself. Consider the metaphor of flying ants replicating the ant community by establishing new ones.

We may certainly experience the meaning of comradeship differently, where we will now have “comrades on the other side”.

Any political movement that imagines itself as a perpetual entity should look at the compelling evidence of history. Few movements have survived those defining moments when they should have been more elastic, and that because they were not, did not live to see the next day.

I believe we may have reached a moment not fundamentally different from the sobering, yet uplifting and vision-making, nation-building realities that led to Kempton Park in the early ’90s. The difference between then and now is that the black majority is not facing white compatriots across the negotiating table. Rather, it is facing itself: perhaps really for the first time since 1994. Could we apply to ourselves the same degree of inventiveness and rigorous negotiation we displayed leading up to the adoption or our Constitution?

This is not a time for repeating old platitudes. It is the time, once more, for vision.

In the total scheme of things, the outcome could be as disastrous as it could be formative and uplifting, setting in place the conditions for a true renaissance that could be sustained for generations to come.

Ndebele is Vice-Chancellor of the University of Cape Town and author of the novel The Cry of Winnie Mandela

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