02 April 2008

Living with an autistic child

My daughter is 18 years old, she cannot read or write, has no friends, and never gets invited to parties or outings. She is autistic.

By Felicity Nelsen

Welcome to Cloud Cuckoo Land - this is where we live. My daughter is 18 years old, she cannot read or write, has no friends, and never gets invited to parties or outings. She is autistic. We have experienced mortifying humiliation, spectacular amusement, but never normality.

Baffling condition
There is no manual that teaches you how to deal with such a complicated person so we turned to the professionals for help. After 18 years of every possible therapy, treatment and diet we have come to the conclusion that no one completely understands this condition at all. So, we make it up as we go along, continually searching for something that will make her life more bearable and hoping more than anything in the world to see her happy.

You cannot reason with an autistic person, they simply do not understand consequences. Their brain is wired differently to ours. They live an isolated life where nobody understands them. They experience sensory overload where every sound, touch and sight is exaggerated and chaotic. Objects are more important than people and they become obsessive about this. Can you imagine being obsessed with a frying pan, or an old face cloth? It is so bad that when she cannot find it all hell breaks loose.

A life of isolation
We cannot take our daughter out in public because her behaviour is completely socially unacceptable. The family has become isolated - friends stop coming around, and who can blame them when she spits at them? Not to mention the neighbours who suspect that we are child abusers, and it is understandable when they hear awful screams and breaking windows at all hours of the night? Our daughter is unable to make sense of our world and we can’t make sense of hers.

Very few facilities, minimal support
The tragedy in all of this is the lack of support and facilities for people with autism and their families. It has a detrimental effect on siblings - they stop bringing their friends around, spending more and more time away from home. As for the parents we simply try to remain sane and maintain a sense of humour.

Our greatest fear is the potential for abuse and what will happen to her should we no longer be around. We are very grateful to Autism Western Cape for working so hard to fund facilities, like the Growth Through Knowledge School for our children. The biggest problem is when they leave school as there very few options available. People with autism are even discriminated against by other institutions for the mentally challenged as they simply do not have the skills to deal with autistic adults.

People with an autism spectrum disorder, due to the altered chemistry and functioning within the brain, literally cannot fully understand other people’s emotions, reactions and the complexity of social relationships. This results in unusual and often complex behaviours and varies in symptoms, severity and impact. Each person with an autism spectrum disorder presents themselves differently.

What is Autism Spectrum Disorder?

Autism spectrum disorder is a lifelong developmental spectrum disorder that affects a person’s ability to communicate, disabling them from relating to those around them and interacting socially on an everyday basis. It results in unusual and often very demanding behaviour. It varies in symptoms, severity and impact, and each person with autism spectrum disorder presents themselves differently.

What is life like for a person living with autism spectrum disorder?
Imagine the radio is not tuned into a station properly. Other radio stations are interfering in a distorted cacophony of sound. Everything you look at is grossly distorted in movement and colour. Faces, objects and sounds make up a nightmare world and leave you with fear and confusion. Your outside world becomes chaotic and frightening. Now try and imagine spending every waking hour of your life in this world. This distortion of sensory input would cause you to withdraw into a safer world inside your own self.

Who is affected by autism spectrum disorder?
The current internationally acknowledged statistics are that 1 in 158 people is affected by autism spectrum disorders. From this we can extrapolate that more than 270 000 people in SA are on the autistic spectrum.

It is not an exclusive disorder, in the sense that it has been found throughout the world in families of all racial, ethnic and social backgrounds, though it is four times more prevalent in males than females.

According to the US organisation Autism Speaks, a child is diagnosed with autism spectrum disorders every 20 minutes.

From data collected from North America, Western Europe and Japan, it is conservatively estimated that 35 million people worldwide have autism spectrum disorders.

What causes autism spectrum disorders?
The causes of autism spectrum disorders are still being investigated, but many experts believe that the pattern of behaviour from which autism spectrum disorders is diagnosed may not result from a single cause.

There is strong evidence to suggest that autism spectrum disorders can be caused by a variety of physical factors, all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up. There is also evidence to suggest that genetic factors are responsible for some forms of autism spectrum disorder. Scientists have been attempting to identify which genes might be implicated in autism spectrum disorders for some years.

What are the signs and symptoms of autism spectrum disorders?
The severity of signs and symptoms vary from person to person, but they often include having:

  • little awareness of others, or of their feelings
  • poor ability to make appropriate social contact
  • difficulty in forming relationships
  • difficulty with speech and language development
  • minimal reaction to verbal input, sometimes acting as though deaf
  • unusual habits such as rocking, spinning or fiddling with objects
  • little or no eye contact
  • a heightening or lowering of five senses
  • difficulty with imaginative play
  • an inability to cope with change in environments

Is there a cure for autism spectrum disorders?
Autism spectrum disorder is not curable, but it is treatable with early and appropriate intervention.

How is autism spectrum disorder being treated?
Because autism spectrum disorder affects each person differently, there are a wide range of treatment options available. This includes conventional counselling, behavioural interventions, relationship-based interventions, speech and language therapy, and music therapy.

Where can I find more information?
Visit or contact Autism Western Cape on 021 556 2600 for brochures, handbooks and general information.

Source: Autism Western Cape

(Joanne Hart, Health24, March 2008)

FIND OUT MORE: The movie Snow Cake, featuring Sigourney Weaver and Alan Rickman, is a touching and powerful exploration of the friendship between a high-functioning autistic adult woman, living alone, and a man traumatised by the car accident in which her daughter was killed. It gives some sense of what living with an autistic person means, and perhaps some insight into the autistic person's world, too. Find it at art movie outlets.


Read Health24’s Comments Policy

Comment on this story
Comments have been closed for this article.