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Autism Demystified
The label ‘autism’ can be terrifying at first, but once the problem has been identified solutions can be sought
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When Andres Lejeune, four, was diagnosed with Autistic Spectrum Disorder (ASD) his mother Rocio was relieved. Suddenly her badly behaved, often violent child, made sense to her, and with understanding came the possibility of improving both his and everyone else in the family’s lives.
“It was a relief to have a label, to finally understand how to help him. It’s the beginning of many new possibilities with him now. Before he was just a child who misbehaved. He had a lot of tantrums and I used to think, physically he’s still small, but how will I handle him when he grows? I was questioning my abilities as a parent. It helps to know it’s not his fault or mine. Knowing he is autistic has changed the way we relate to him; we are more patient and we try to see things from his point of view. We have changed his diet and have been able to get him the help he needs and already there has been a big change for the better in his behaviour.”
Children like Andres don’t behave badly because they are naughty, but because the world around them is a frightening place – too loud to listen to, too scratchy or too hard or too soft to wear or touch, too bright to look at, too sour or too sweet to taste.
Speech therapist Deborah Stodel says: “The world is at times a terrifying place because they can’t make sense of it; it is bewildering because they don’t perceive things as we do. The biggest problem is their lack of imitation and that they’re not socially motivated. If you don’t intervene, children with autism may engage in repetitive behaviour – sit in corners and flap, for example. This is a big factor in why we intervene: our world terrifies them and that’s where they have to live. We have got to give these children a chance through intervention. These children have high levels of anxiety which is often what leads to extreme behaviour,” she says.
The challenge for parents and teachers is to find ways to make the world feel safer, less alien, and more habitable for these troubled children. “When the behaviour is under control, the real features of the child’s personality emerge,” says Annalies van Rijswijk, who runs the Special Needs Adapted Programme (SNAP) for autistic children.
What is autism?
Autism is a psychiatric disorder with neurological causes, classified in the Diagnostic Statistical Manual of the American Psychiatric Association as a Pervasive Developmental Disorder. Autistic Spectrum Disorder (ASD) includes Autistic Disorder, Aspergers Disorder, Pervasive Developmental Disorder, (which is a more subtle form of Retts Disorder) and Childhood Disintegrative Disorder.
ASD ranges from very severe to barely noticeable, but it is usually characterised by a triad of impairments in communication skills, social interaction and imaginative activity, according to paediatric neurologist, Dr Birgit Schlegel. “These children also think differently from neuro-typical children,” says van Rijswijk.
“They have enormous difficulty with abstract reasoning. They find it enormously difficult to socialise because they don’t read body language. Some of them learn how to do it, but the world stays difficult because it’s not natural for them. Neuro-typical children do spontaneously what these children have to work on. Many problems arise because people don’t understand how they think. For example one of the boys who was on the SNAP programme who has gone to a mainstream school chose his friend because they both have the same colour suitcase. Academically he’s doing well but he’s being teased because he is different from the other children. Another difficulty is that many children with ASD are hypersensitive and most also have low muscle tone, says Schlegel. “Many [autistic] children have associated significant learning difficulties.” Children with ASD may also suffer from epilepsy, sight, hearing and speech problems, clumsiness and co-ordination problems, among others. There has been a massive increase in the number of children being diagnosed with ASD.
Stodel tells us that a decade ago British statistics put the number of children with ASD at one in every 10 000. Today the figure is up to one in 158 and a study completed in London this year puts the figure as high as one in 100.
It’s unclear what has caused this massive increase in numbers, but the feeling among professionals is that the jump probably reflects a rise in diagnosis rather than an increase in incidence. Van Rijswijk says, “Some children are born autistic while others develop normally and then – usually before they are three – they start losing skills. No one knows why. I have worked with a few children who had a severe trauma and then lost all skills. I believe all these children were however prone to autism.”
“ASD is often diagnosed at around 18 months when a child is normally starting to verbalise – it’s also the age at which the MMR (mumps, measles and rubella) vaccine is given. This timing has led some people to believe the MMR vaccine causes ASD. There is no medical or scientific evidence to support this link though. Rather, scientific evidence points to a genetic cause. Some medical conditions or disorders can be associated with autism. Children who have previously had rubella or cytomegalovirus infections, often before they were born, children who previously had Herpes encephalitis or children with phenylketonuria, a metabolic condition, may also be at risk,” explains Schlegel.
Looking for solutions
The label autism can be terrifying for parents at first, but as mom Rocio says, “Once you know what the problem is, you can look for solutions.” Her family’s solution was extreme; they packed up their home in Belgium where they would not be able to get ASD-specific help for Andres until he was six, and moved to South Africa. “Here we looked at the different options and we liked SNAP. It’s also important for me that I can meet and speak to other parents here.” Stodel, and others working with children with ASD, believe the sooner you start therapeutic intervention, the better for your child. “With diagnosis you’ve had a bombshell, there are worries for the future and massive financial implications but the quicker you can start with one-on-one therapies the better,” says Stodel.
A child with ASD usually needs physio, speech therapy, occupational therapy, a special diet – as ASD kids often have gut problems – as well as a tutor to teach and guide them through the minefield of social interaction. A psychologist and a paediatrician should also be part of the team. At SNAP Rocio got all this for Andres, or was referred to the relevant specialists.
SNAP offers a varied programme. Brain gym, a series of exercises that cross the body mid-line, and pressure point stimulation make children more aware of their bodies and their place in the physical environment.
A brushing programme helps desensitise children who are sensory hyperaware.
“One child I worked with was so sensitive that putting his finger in shaving cream hurt. This is often why these children can’t handle being touched – it’s not because they are necessarily unloving,” says van Rijswijk.
There are oral exercises that help with both eating and speech. Oral problems in ASD children can be tactile or to do with low muscle tone. The children also ride a horse twice a day at SNAP. The riding improves muscle tone and posture and provides the possibility for a non-judgemental relationship to develop between the child and the horse.
Van Rijswijk says: “Some children improve so much that they are blended into mainstream schools later. These are children who started here at age two-and-a-half with no speech, temper tantrums and emotional difficulties. The earlier you start the better because the behaviour patterns aren’t so set yet. What you always have to remember is that the autistic child needs to be taught everything – it’s so wide it’s mind-boggling at times. Recently one of the children got a cat and was told he could name it. He didn’t understand the concept, didn’t know how you went about naming something. He had to be taught that the horse he rides everyday has a name, he has a name and by the same token the cat could also have a name as a way of identifying it. The main thing though is to teach children language, because out of that comes play, interaction, socialisation and relationships with other people,” she says.
Stodel agrees that mastering language, whether verbal or visual, can make a world of difference to families living with ASD. “I’ve seen parents burnt out and exhausted; their children may scream constantly. When these children have learnt to communicate they go from that to a child who runs in, greets me, sits down and is happy,” she says.
Andres is still struggling with language; he already understands and, to a degree, speaks French and Spanish and now he has to learn English. Despite this his life and behaviour has changed enormously since coming to South Africa and working at SNAP. “Before he was taking all my time – I had no time for my other two children. Now he listens more, he’s toilet trained, he’s happier and we are convinced we have done the right thing by coming here,” says Rocio.
Jenny Buckle has four boys – Dylan, 12, and autistic triplets who are 11. She’s also a single mom.
“Somewhere between when they were twelve and eighteen months old we started noticing problems or differences with them. We noticed they weren’t speaking, but we weren’t sure if they were just doing ‘twin-speak’ among themselves. They were tolerant of each other’s touch but they were sensory avoidant to others. When the triplets were three they were diagnosed as having typical autism markers; they didn’t speak, they avoided eye contact and had little interaction, even with each other. They could sit for hours engaged in typical repetitive behaviour,” she says. The most frustrating thing for Jenny was that there were few options for help available for children this age. So she started the Applied Behaviour Analysis (ABA) Reach Programme, working with her triplets eight hours a day, five days a week.
ABA works with enforcement; the child learns to do something because the idea is repeatedly reinforced. Skills are broken down into manageable tasks. As she learnt about ABA, Jenny was using it to teach the triplets.
“It was absolute chaos. I was dealing with four kids, studying in the evening and training tutors to start working one-on-one with the triplets – I never slept!” she says.
After doing this intensively for a couple of years she began giving workshops for families living with ASD and also began managing other children’s programmes.
Four years ago she went to the USA to learn about Relationship Development Intervention (RDI). It’s a programme that helps children learn how to cope in a dynamic environment and develops mental programmes to aid social function. “For me it’s so important that there are more people empowered to provide programmes [for ASD children]. In the past few years autism has been demystified and parents need to be empowered to work with kids. My work is enabling the triplets to cope in this environment; it’s giving them the skills to be able to make choices. I want my twelve-year-old to be able to speak if he wants to. I am equipping them to make their own choices,” she says. The massive investment of time and money in her boys’ lives has had an enormous impact on the family’s life.
“A lot of the beast of autism is no longer in our lives. If you meet the triplets you might think they have a language problem, but you probably wouldn’t think there was anything wrong with them. They don’t have age-appropriate peers, but they have their cousins and each other. They have preferences for clothing they like to wear, places they like to go and they can communicate things to me. I can go on holiday with my four boys and have a good time.”
Like Rocio, Jenny doesn’t regret the time and money she’s spent over the years.“I would do anything to keep the three of my four boys out of an institution. Working with them has been an incredible journey for me.”
Diet and ASD
Many children with ASD also have severe stomach problems and an intolerance of certain foods. Removing these foods can have an enormous impact on your child’s behaviour, says paediatric clinical nutritionist, Adel Pelteret.
Jeannie Adams says changing her son Michael’s diet impacted hugely on his behaviour.
“It won’t fix things but the diet helps keep him calm and helps him cope. One can’t just treat the brain and not treat the stomach and soul of these children.”
One of the main areas of concern in natural foods for ASD kids is the case dairy products, which appears to ‘drug’ them, making them sleepy and unfocused. The protein in cereals and grains - gliadin – is also a problem, provoking an almost allergic reaction in ASD kids. It can affect the brain, thyroid and intestinal tract.
She goes on to caution that chemicals in innocuous seeming products like shampoo, washing powder and creams can have as much effect on a child as the chemicals in food colouring for example.
Not all children show major changes with diet changes, but Pelteret says the behaviour of children with ASD often improves when their diet does.
“Three diets we use with ASD are the Body Ecology Diet, the Gluten Free/Casein Free diet and the Specific Carbohydrate Diet.
However, each child is an individual and each will be on a different place on that disorder spectrum, so the diets I prescribe are child-specific,” she explains.
Good to find an expert who knows what she's talking about.