Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. Parents usually notice signs in the first two years of their child’s life. These signs often develop gradually, though some children with autism reach their developmental milestones at a normal pace and then regress. The diagnostic criteria require that symptoms become apparent in early childhood, typically before age three.
- 1Article about Autism
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.”
- 1Common Myths of Autism
JF Kennedy once said: “A child miseducated is a child lost”. In South Africa our constitution states that all children should get equal access to education. Upon closer inspection, we find however, that 1 out 110 children, diagnosed with a spectrum disorder, are sadly not given equal access to education nor do adequate facilities exist to cater for them. Children, that due to the nature of their developmental disability, require urgent early intervention (between the age of 2 and 6) in order to improve their prognosis and achieve their full potential.
These are the children living on the autism spectrum.
According to DSM IV diagnostic criteria, children with autism are identified by a qualitative impairment in social interaction, communication and restrictive or repetitive stereotyped behaviour. The obstacles facing these children and their families are extreme.
Not only are these children often misdiagnosed or diagnosed too late, intervention without government support is extremely expensive. Medical Aids still do not recognize the disability or provide funding support for it. On top of that not enough schools, trained professionals and facilities exist in South Africa to cater to the needs of a disability that has, according to the Department of Health, increased 500 % in the past 5 years.
In 20 years the outcomes will be dire for the SA economy if the private sector or government does not intervene now. If early intervention can be given, 48 % of these children can progress to leading productive lives and not end up as a burden on the state.
Part of the process in leading the way is to advocate the facts and disregard the myths. The following myths commonly exist about Autism:
Autism spectrum disorders are not increasing in incidence. They are just being better diagnosed, and diagnosed earlier so the numbers are increasing.
Autism spectrum disorders are increasing world-wide at an alarming rate. Some countries are considered to be in an autism epidemic. Better and earlier diagnosis can only account for a fraction of the current increases in numbers.
It is better to “wait and see” if a child improves than to refer the child for a diagnostic assessment.
The earlier autism spectrum disorders are diagnosed and treated, the better. Outcomes for children’s lives are significantly improved with early diagnosis and treatment.
Myth: All children with autism are mentally challenged
Usually the children are perceived as mentally challenged because they are unable to communicate. However, when the children receive early intervention and because they have good memories, they show that they can learn and achieve goals in life.
Myth: All children with autism are savants
Only 5 % of all children with Autism have savant skills. These children stand out for their superior ability in a specific area, like doing mathematics far above their age or art or music.
Myth: Children who are mildly autistic do not require early intervention
Mild or severe, these children’s thought patterns are very literal and they therefore build patterns into their daily routine. In order for them to learn to become more flexible they need to acquire the tools to be able to understand and cope in an unpredictable world.
Myth: All children with autism do not want to be touched or hugged.
Children who are sensory sensitive are the ones who cannot tolerate to be touched. There are many children on the spectrum who crave physical interaction.
Myth: Children with autism do not make eye contact
Fact: Some children are comfortable with eye contact and because of this are often misdiagnosed.
Myth: Children with Autism will never properly talk or communicate
Some children have dyspraxia. This means it will take longer for their speech to develop and will become more intelligible as it is practiced, but it will develop. Only in severe cases does a child with autism not talk. But communication is possible for all as they learn to sign or use PECS (Picture Exchange Communication System). These methods teach them how to connect and interact with other people.
People with autism spectrum disorders cannot have successful lives as contributing members of society.
Many people with autism spectrum disorders are successful and contributing, however, this is most likely to happen when appropriate services are delivered during the child’s public educational years.
SNAP is a program for children with autism, with head quarters based in Durbanville, Cape Town. They offer a unique, child-specific, one-on-one, integrated program for children with autism and other special needs. Their program recognizes the uniqueness of each child and is geared to addressing the needs of each individual child and their family.
For more information visit www.snap.org.za or email firstname.lastname@example.org
Going to the Doctor
- 1A guide for children with ASD
Autism South Africa
Going to the doctor: A guide for children with an Autism Spectrum Disorder (ASD)
By Emma Jones
Touch (Tactile System)
Some people with an ASD are not very sensitive – hypo-sensitive- to touch. This means that they may have a high threshold to pain or temperature and do not mind heavier pressure when touched. This can cause difficulty when being examined by the doctor as the person with autism may not appear to be in pain but could, for example, have broken a bone.link sit na die res
The person with an ASD may be unable to decode the different body sensations to recognise it as pain.
They can display unusual responses to pain such as laughing, humming or taking their clothes off which may make it difficult for the doctor to recognise and identify the problem. It may be that change in behaviour is the only indicator that a person with autism is in pain.
On the other hand, a person with autism may be very sensitive – hyper-sensitive-to touch. They may experience the slightest touch as uncomfortable or even painful and will therefore withdraw from touch. This can cause difficulties when a doctor is trying to conduct a physical examination. Materials used could also be a problem: for instance, the paper sheet on the examination table, cotton wool or plasters may cause particular discomfort.
Sensory difficulties – Lights
Sensitivity to certain lightning can be a particular problem for people with autism. For instance strip fluorescent lighting can be experienced as painful and distracting. It has also been found that the use of pen lights can trigger seizures in those susceptible 20-30% of people with ASD. (Kagan-Kushnir, Roberts and Snead, 2005)
Fear of the unexpected
Although a visit to the GP can provide the structure that people with autism require in that there is a definite routine involved, it can still cause anxiety.
This may be the due to the fact that in most cases it is not known exactly what a doctor will do. The unstructured time in the waiting room and the other patients present can be difficult for a person with an ASD. The unfamiliarity of the consultation room and equipment used can seem quite daunting.
Alternatively, negative experiences from the past and associations with pain can influence the future associations and fear of the experience of a person with ASD.
- 1ASD in early years
Autism South Africa
Early Years and Autism Spectrum Disorder
By Christine Deudney and Lynda Tucker
WHAT IS AN AUTISM SPECTRUM DISORDER (ASD)?
An Autism Spectrum Disorder (ASD) is a lifelong condition that affects the way a person communicates and relates to the people around them. People with ASD have difficulty on relating to others in a meaningful way. Their ability to develop friendships is generally limited as is their capacity to understand other people’s emotional expressions. Some people, but not all, have accompanying learning disabilities .All people with ASD have impairments in social interaction, social communication and imagination. This is known as the triad of impairments.
Some children may be diagnosed as having Asperger syndrome or high functioning autism. Children with Asperger syndrome have fewer problems with language than those with Classic/Kanner autism, often speaking fluently, though their words can sometimes sound formal or stilted.
People with Asperger syndrome do not usually have the accompanying learning disabilities associated with Classic/Kanner autism: in fact, children with Asperger syndrome are often of average or above intelligence. Many will enter mainstream school and, with the right support and encouragement, can make good progress and go on to further education and employment.
It is important to realise that each person with an ASD is different from the next so the descriptions in this information sheet should only be taken as a general guide. Nevertheless, the common problems affecting social interaction, communication and imagination and the behaviour are common to all.
SIGNS OF AUTSIM
Children with an ASD exhibit a wide range of behaviours. Essentially though, the child will have difficulty relating to others and making friends; difficulty in communicating (some children may not talk at all); and be unable to engage in imaginative play.
Other signs include obsessions, fears, a lack of awareness of danger, ritualistic play and behaviour, inappropriate eye contact, hypersensitivity to sound, light etc., pinning objects and hand flapping.
A child does not need to show all these signs to be diagnosed as having an ASD and some children who do not have an ASD may exhibit some of these behaviours.