Invited speakers left me thinking...

With our brains buzzing from the imminent threat of midterms, we were given a brief break from pure academia today. We welcomed four speakers from the community to give us some insight into Down's Syndrome, Autism, Eating Disorders and Depression, all of whom had something invaluable in common: personal experience, and a lot of it...

Down's Syndrome is a condition I was only vaguely familiar with from high school Biology and university Physiology lectures, so it was unsurprising that I was introduced to many concepts I had never come across before.
Through her 31 years of experience, following the birth of her daughter with Down's Syndrome, our speaker had a great deal of practical information that clarified my understanding of the syndrome tremendously.

She explained the prevalence of Down's Syndrome, pointing out that it is present across all races and socio-economic boundaries. It was surprising that Down's Syndrome has a prevalence of 1 in 660 in South Africa, much higher than I had imagined.

Having been given a brief overview of the history of the syndrome, I found it interesting how perceptions of the condition have changed over time, from people with Down's Syndrome being referred to as 'Little Mongolians' and having a life expectancy of just 9 years, to their current participation in all aspects of society, most experiencing a normal lifespan. It was also fascinating to find out that there are different manifestations of Down's Syndrome, such as Trisomy 21 (the most common occurrence), Mosaic and Translocation types.

I found it inspiring to hear the story of a young man with Down's Syndrome, who not only holds down a normal job, but also has his driver's license and is married. I hadn't realised that I had been constructing a ceiling for people with Down's Syndrome in my head, and it was eye-opening to have it shattered by the story of this individual.

From the perspective of a mother, the speaker had a unique insight into the difficulties faced by the caregivers of children with Down's Syndrome, not only physical and mental challenges, but societal as well. She expressed her annoyance at being told she was 'special' for having received a child with Down's Syndrome, or being treated to a range of irrelevant generalisations when someone found out her child had Down's Syndrome. It was refreshing to hear her perspective from the other side of the therapeutic 'table'.
She also stressed that children with Down's Syndrome be integrated into society as much as possible, so that they learn to comply with social norms, and can therefore be better functioning members of society.






The next speaker focused on Autism, another condition I had never had much opportunity to experience first-hand (but one I should definitely look into for my next Electives block...). She gave a good picture of a typical Autistic child: solitary play, routine or stereotyped behaviours, often a lack of verbal communication and delay or absence of social norms. She also explained that sensory difficulties are another common presentation, which OTs have a large role in, particularly with regard to sensory integration.
An interesting aspect was the historical progression in thought around Autism, from viewing it as a result of an unattached 'cold ice-berg' mother in the 1960s, to viewing it as a behavioural problem that could be remedied through reinforcement schedules in the 1970s and 80s, and finally, to the current socio-developmental or humanistic approach, which uses a more child-centred approach.

An interesting concept that the speaker introduced us to was the 'Theory of Mind', the idea that Autistic children lack the ability to perceive the thoughts or intentions of others, leading to a fear of the others' unpredictability. This in turn affects social interaction.

The speaker offered some good advice to us for working with autistic children:

• As patterns develop quickly, have a regular, positive routine for the session, so that the child starts to build rapport and learns to trust the therapist
• Do not set unrealistic expectations for the child, as this will cause anxiety and be overwhelming
• Focus on enjoyment and building rapport first
• Correct sensory, social and communication deficits first, through simple activities (e.g. starting off with blowing bubbles) before upgrading to include more interaction and functional skills

These tips make sense in a slightly vague way to me currently, but will no doubt come in more useful next year, when I have some practical experience to relate to it. In the meantime, the speaker left us with a list of interesting titles of books around Autism, which we can start perusing over the holidays (well, that's the plan... I hope some of them have pictures :D)

The next speaker, discussing Eating Disorders, was an interesting one, as she had gone through and recovered from an eating disorder herself. She explained how her problem had started, when she was High School and had been placed in the 'Fat' line due to her muscular build, setting off a spiral of negative body-image problems that, combined with a sense of perfectionism and obsession, turned into a full-scale eating disorder. She explained how she would constantly weigh herself, do excessive exercise and barely eat in an effort to lose weight.

From a first hand perspective, I got a real sense of the complexity of an Eating Disorder, and the all the underlying issues that have to be resolved before the disorder can be healed. It goes far beyond a simple desire to 'look thin' and into an obsession with control over the body, often to compensate for a lack of control in other areas of life.

The speaker gave some interesting tips on dealing with an eating disorder of a loved one: never comment on their weight or appearance, as it is likely to cause more harm than good. Rather focus on feelings and relationships, expressing your worry and desire to help them seek assistance. She stressed that eating disorders are not a demand for attention, but rather a maladaptive way of dealing with various underlying issues.

The final speaker spoke on Depression, a disorder affecting 1 in 4 people in South Africa, and accounting for 95% of suicides. She used an interesting way of presenting, using videos and music to convey the seriousness of the condition, and give us a sense of how people with depression really feel.
The important points stressed were that depression is treatable on medication, but is never an illness that just disappears. It often reappears throughout the lifespan, triggered by traumatic events or illness. She also reiterated the importance of picking up warning signs of depression and suicidal ideation, such as withdrawal, isolation, loss of interest in activities and irritability, and confronting them as soon as possible.

The speakers today were each inspirational in their own way. They provided valuable  perspectives on conditions we will be working closely with as we progress in our profession, from a very personal viewpoint not usually experienced in our academic lectures. They also introduced us to a variety of resources, such as the Down's Syndrome Association, Action in Autism and SADAG (South African Depression and Anxiety Group), that we can draw on in  years to come.