There were many low points in the early years of parenthood for Caz Collins, a Durban mother whose son Malachi, 9, has autism.

"I was accused of being a bad mother many times," she says. "One of the manifestations of autism is difficult behavior and it is very misunderstood by people who do not know about the condition."

Like many families, the Collinses structured their lives around their child's limitations. Eating out was difficult because of his food avoidance and inability to tolerate unfamiliar settings. Fireworks would cause tantrums and getting caught in the rain was a problem. He could not handle the sensation of the water falling on his skin and taking a shower was out of the question. Cutting his hair would be a struggle from start to finish with non-stop screaming and thrashing around. If he was at a park, there would be tantrums if "his" swing was taken or if he had to wait in line for a slide. In addition, his language was delayed by 2 years and he had no social communication. All of this made socialising something of a nightmare.

Fortunately for Malachi and the Collins family, he received structured support from an early age, when the family was living in Denver, Colorado in the United States. Today he is a high-functioning pupil in a mainstream school in Durban.

Caz has experience with autism both as a professional and as a mother. She is a trained behavioral consultant who will be starting her Master's degree in autism this year. She also runs a support group for parents of children with autism.

"Living with an autistic child can be extremely stressful, and 80% of parents who have a child with autism end up separating," says Caz. "Because challenging behavior is typical of children on the autism spectrum there are parents who do not take their children out because of it. Having a child with autism is stressful for the whole family but behavior and communication can improve with the right support."

In Caz's case, she noticed changes in Malachi when he was 15 months old. As a toddler, his behavior worsened as he became picky with foods, threw tantrums, and would not respond when spoken to. When baby Ethan arrived, the family thought his difficult behavior was his way of adjusting to a new sibling.

"Experts said we were not disciplining him and we tried everything to improve his inflexible behavior," says Caz. "At age three, his speech development was poor and we decided to take him for a complete assessment. He was diagnosed with autism and while it was a shock, it was also a relief to get a diagnosis. We had been living in West Africa and when we returned to the US, I signed up for training."

Malachi started an intensive Applied Behavior Analysis (ABA) program. "It was hard and there were many tears but we just had to work our way through it," says Caz.

He attended a preschool that catered for special needs, but for starting reception, finding a school was difficult. He was not eligible for a special needs class as he was academically within the normal range, but without help in the classroom his learning would be hindered, so his support professional was sent along to school.

At the end of grade 1, Malachi was the regional winner in a spelling bee competition that involved 20 schools. Support tapered off as he improved and when the family returned to Durban, Malachi enrolled at Eden College in Glenmore, where he is now in grade 4.

"He is doing well at school academically but still needs support at times and has some social difficulties. His communication has improved a lot. At home he behaves like a typical child, asking for more TV time and fighting with his brothers. Although we are not at the end of the road, when we look at where we started and how far we have come, I am filled with pride."

There are many support approaches available for children with autism but ABA has the most research backing for success, dating back to the 1960s. For many families in South Africa, however, access to support is all but barred due to financial restraints. Disability grants and funding for appropriate schooling for children with autism are in desperate need.

"I have yet to meet a child with autism who is unable to learn. With early support and the right approach, there is hope for children with autism."

Autism fact file

  • Autism is a lifelong, complex disability which appears to have a genetic and environmental cause.
  • It occurs in one in 110 children under the age of eight.
  • It occurs in four times as many boys as girls.
  • It can present in many ways and is referred to as Autism Spectrum Disorder.
  • Differences are seen in language and communication, social interaction, and imagination, with rigid thought patterns and behaviors.
  • Autism is lifelong, and with early support, individuals can be helped toward their full potential.

Early warning signs

  • Limited or absent eye contact.
  • No pointing or babbling by 12 months.
  • Delayed or absent speech.
  • Lack of joint attention, meaning limited mutual enjoyment of an activity by referencing back and forth with another person.
  • Absent or limited imitation skills.
  • No response to his or her name being called.
  • Lack of interest or response to age-appropriate toys which are exciting.
  • Repetitive, ritualistic, or obsessive behaviors.
  • Lack of need for social interaction, preferring solitude.
  • Does not look to a parent for reassurance during an unexpected event, such as being approached by a stranger.
  • Failure to develop peer relationships.