According to Dr Schlegel (Paediatric Neurologist), there is a triad of hallmark problems associated with autistic children. Typically there are communication problems, and language development is delayed. Social interaction is problematic as autistic children don't assimilate the social conventions that other children do. And thirdly, imaginative play is impaired. Autistic children simply relate to the world differently. "We try to take down the wall so that communication can take place", says Dr Shlegel, "however, you can't cure this condition. Autistic children will always have communication problems and relationship difficulties and parents should monitor and support their children particularly in these areas. What I recommend to parents who are worried about their child's lack of speech development, is to get a professional opinion. Early intervention definitely makes a huge difference to the development of an autistic child. There are programs that offer a lot of support and some children can learn to communicate, however ASD is a biological problem that persists."
Dr Schlegel referred Michael to speech therapist Deborah Stodel, who suggested that Jeannie get in touch with Annalies van Rijswijk at SNAP (Special Needs Adapted Program) in Durbanville. Annalies founded SNAP, a program based on the principles of behaviour modification, after working at the Vera School for 11 years. "Our meeting with Annalies was like coming home", says Jeannie in her e-mail. "I started crying when we drove into the gates and I didn't stop for two weeks. Everybody started getting a bit worried, but I was fine. I was simply so relieved to find help". The help that Annalies offers is an integrated program of tuition for Michael, as well as emotional support for Jeannie and Kevin. Dedicated tutors give each child a unique program of one-on-one lessons, in everything from recognizing emotions to saying hello and goodbye. There are ten little classrooms, and on the day I visit the school, Marisa van der Berg is observing her son, Rohan through a one-way mirror in the classroom door. He is happily working with his tutor, and if you didn't know he was autistic you wouldn't guess he had a developmental problem. The fact that he has always made eye contact with people, something that autistic children generally don't do, made diagnosis difficult. Says Marisa, "we went to see our doctor because Rohan wasn't talking at all, but our doctor said he wasn't autistic. He told us that he had behavioural problems and that we should be stricter with him". With no help from the doctor, Marisa and her husband had to take Rohan home and try to figure out the problem themselves. By the time they heard about SNAP, the stress and exhaustion was taking its toll and they were on the verge of a divorce. "The first day I came here, I thought "no way" but I saw an improvement in 30 minutes". Now that the Van der Bergs have seen Rohan's progress, the divorce talks have been called off. "My husband now understands that he has to be consistent, that he can't allow Rohan to tear up the newspaper one day, but get cross when he destroys it on another day before it has been read". As we stand outside the classroom, Rohan starts screaming. His tutor has asked him to stack three blocks, and he doesn't want to do it. "He is happy to play with blocks at home", says Marisa, "but he hasn't done it here with his tutor yet, and he doesn't like change". His tutor gently persists, encouraging him to stack the blocks with the promise of some bubbles once he has completed the task. When he is finally ready to stack the blocks he is rewarded with smiles and praise. Marisa's doctor's reaction - blaming the van der Bergs for their son's behaviour - is unfortunately not uncommon. "Not long ago", says Deborah Stodel, "the theory was that autism was a psychological disorder caused by poor bonding between a mother and child." Autism is a biochemical brain disorder, and is not about bad parenting. The symptoms vary from person to person, and while there are broad categories within the spectrum ranging from Asperger's Syndrome (when the child can talk but has poor social skills) to Rhett's Syndrome, each child has to be individually assessed and treated. Many parents initially feel that they are to blame somehow, and go through a process of trying to figure out why their child has autism. But as Dr Schlegel points out, scientific evidence points to a genetic biological cause. "Autism has strong associations with a range of other conditions like epilepsy and Fragile X syndrome, which causes developmental disabilities", she says. It is a biological problem something has happened in the early development of the brain. At this stage research indicates that there are a variety of contributing factors. Genetic factors play a role and there tend to be clusters in families as well as concordance in twins. The fact that it is polygenetic (more than one gene is involved) makes it more difficult to identify the responsible genes. There are also environmental facts, such as a high-risk pregnancy, and research is also looking into the mother's mental state during and after pregnancy, which is obviously a sensitive issue, says Dr Schlegel. There are sometimes additional factors that can trigger and bring out the symptoms of autism, such as a child's long separation from its parent or caregiver, a death or a life-altering change. Some parents blame their child's autism on the MMR vaccine and there is currently a lot of research into whether there is a relationship between the MMR vaccinations and ASD. Jeannie has wondered about the MMR. "It could've been made worse by the MMR vaccination, which left Michael very ill with a high fever. Who knows? Nobody can actually tell me for sure why and how. I just know that he was different right from birth. He wanted to sleep alone and was always quiet and hated crowds." Another thing confounding doctors is why the numbers of autistic children seem to be exploding. Deborah Stodel says that ten years ago the figures were one in 10 000, and now they are 1: 158.
In David Straughan's case it was a after a bout of meningitis that his paediatrician suggested his parents take him to a psychologist. Says his mother, Ronel, "I was irritated with the suggestion but when we saw the psychologist she said we should brace ourselves for bad news. I thought there must be a mistake. David's speech was slow, but I hadn't thought it was a problem". Ronel and her husband, Mark, reacted to the diagnosis of PDD in very different ways. "I panicked and wanted to run a mile,"says Mark, but Ronel went at it with great gusto. "Mark went into shock because I think he understood the full implications, whereas I think I didn't", says Ronel. She set up a range of therapies, which have been very successful and David has blossomed. "His speech is great and he is engaging and communicating. We are aware though, that there is some stuff that is never going to change. "Siblings often bear the brunt of living with someone with special needs. Ronel and Mark are still figuring out how to control the impact of David's needs on their relationship with their oldest son, Matthew.
Jeannie and Kevin try to give Gabrielle, who is only a year older than Michael, equal time, but it's difficult. What they have done as a family is changed their diet, to match Michael's new gluten- and dairy- free diet. Dr Schlegel concurs that diet is important. And Michael's progress? "He has responded incredibly well to the tutoring at SNAP. He is a different child", says Jeannie, "when he called me Mama for the first time ever, three days into the program I think my heart missed a few beats". He has developed a year of milestones in little more than a month and Jeannie is hoping that he will be one of the children at SNAP who can go to a mainstream school.
"I have declared war on this autism within my child," says Jeannie. "I know very well that Michael will always be autistic, but I shall do everything in my power to make him an as independent an adult as possible and to teach him life skills and compassion, which I believe is a cornerstone of life."