the facts AUTISM There s a lot of confusion on In the first of our three-part series on autism, Rebecca Simpson explains what autism is and isn t.

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1 AUTISM the facts In the first of our three-part series on autism, Rebecca Simpson explains what autism is and isn t. There s a lot of confusion on parenting forums about the causes of autism, which makes it a hot topic. It s such a dynamic discussion and one that can be difficult to navigate. In this first article of a series of three, Playtimes explores the roots of the autism discussion what is autism, what are the signs and how do Hong Kong mums go about seeking help if they re concerned? What is autism? Autism is also referred to under the umbrella term of autism spectrum disorders, or ASD. The World Health Organisation defines ASD as: a group of complex brain development disorders. This umbrella term covers conditions such as autism, childhood disintegrative disorder and Asperger syndrome. These disorders are characterized by difficulties in social interaction and communication, and a restricted and repetitive repertoire of interests and activities. Officially, autism affects one child in every 160 as a global average, but some studies show that this average is increasing, although some experts believe this may be due to increased awareness, better diagnosis and a broader definition of autistim spectrum disorders (ASD). Dr David Fischer, behavioural consultant at Autism Partnership in Hong Kong, explains, Autism is a pervasive developmental disorder. That means it affects every area of a child s development. It can affect different areas to different degrees, but autism has a profound impact across an individual s entire life. He continues, From a diagnostic point of view, you re looking at two areas primarily an individual s social behaviour and social capacity; and the other area is behavioural. Signs of autism Autism presents uniquely from one child to the next, and that s one of the reasons why it can be very difficult to identify whether or not an individual has autism. However, Dr Fischer shares some common traits that might act as red flags for a child being at risk of an ASD diagnosis. These include: 1. Limited eye contact. Babies, even if they 42

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4 can t talk, still give eye contact and communicate that way. Individuals with autism are very unlikely to do that, even from such a young age. 2. Infrequent sharing of experiences. Dr Fischer explains this with the example of driving down a road and seeing a bear. A child, even if they can t talk, might point at the bear and turn to the person they re travelling with to share the experience of seeing an animal by the side of the road. Somebody with autism, even if they see the bear, isn t motivated to share that experience with another person. 3. Unusual repetitive behaviour without any functional goal. A child with autism might be lining up objects to play, instead of playing with them. Or repetitively waving their hands in front of their face. They might also have a routine in their daily life and be very upset if that gets disrupted. This could be something as simple as the path you take to the supermarket or school. If this regular path is changed, this would significantly affect a child with autism. 4. Restricted interests. This includes restriction to one or two activities, but also extends to individual tasks within an activity. An example of this would be repeatedly spinning a wheel on the same car. Dr Fischer also noted two issues that can be found among those with autism but aren t always present: a dramatic regression that is allencompassing; and high rates of disruptive behaviour. These behaviours don t present at a specific age for all affected children it can vary widely. Depending on the degree of impairment, how early you can diagnose the child will vary a lot, says Dr Fischer. Someone who is mildly impaired might not really begin to show any symptoms until they are in a school environment with a lot of other kids and people they aren t familiar with. The social demands and the structure of the setting will bring out problems that may not have presented earlier. For those children more severely impacted, parents may be able to identify the need to seek some help by the age of 12 months. Most likely what we consider to be autism now is actually a set of disorders we haven t separated from one another yet. We just don t have enough information. And, as we learn more about the genetics, the particulars and the subgroups, we might then be able to pick apart what is going on with the cause a little better, adds Dr Fischer. Myth-busting Water cooler discussions about autism are detrimental. It s a complex disorder and a field of study that is dynamic and constantly being updated. Here are some common rumours put to bed: Autism and vaccinations The World Health Organisation reports that data shows there is no evidence of a link between the measles-mumps-rubella (MMR) vaccine and autism spectrum disorders. When asked about the link between autism and vaccinations, Dr Fischer is adamant. It s a very sad story. There was a study published a while back that linked vaccinations to autism. Not only has that study never been replicated but it s also been learned that the doctor falsified the data. What he was reporting never even happened. He s since lost his licence. A lot of children have been sick and died because they haven t been vaccinated in response to this study. Parental blame game Sadly, parents of autistic children can be subjected to some unfounded blame and guilt by those who are illinformed. Dr Fischer explains, Again, this comes down to poor research. Many, many years ago there was a psychologist who blamed a mother for being unloving which, of course, is completely ridiculous. Now we would see that as absurd, but in the 1940s it wasn t looked on that way. Dr Fischer clarifies, This is largely a genetic disorder so it s not chosen by anyone. There are some risk factors that we are starting to get some evidence for regarding playing a role in the development of the disorder. So for example, parental age is a factor. Interestingly, if a child has a much older father than the mother, that is an additional risk factor. It s not just that the father is old, but if the father is older and the mother much younger than he, that combination increases the risk of autism. If the mother experiences a severe depression, that is May

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6 a risk factor too. Not to be alarmist certainly most women who experience depression in pregnancy won t have a child with autism but it is a little piece to the puzzle. We can see there are some environmental factors that could be affecting a mother that, through no fault of the mother, get passed down to the child. Autism can be cured You hear that word sometimes, even from reputable service providers. Something that I mention to parents when they re looking at the endless barrage of treatments they hear about, a red flag for them should be if a provider is claiming they ll be able to cure their son or daughter. That s a sign you should think twice about proceeding. They re claiming something they can t possibly deliver, warns Dr Fischer. He shares that even though, with intensive therapy, a child with autism may become indistinguishable from a typical child, they still have autism. The reality is they re not cured. They have to try harder than a typical person would to appear typical. The path to diagnosis Parents with concerns about their child have a few options when seeking help. The first step is usually to discuss your worries with your doctor or paediatrician, who will be able to give advice and, if necessary, recommendations for a psychologist who is experienced in assessing children. Hong Kong s governmentrun child assessment clinics (CACs) can provide assessments, but the waiting lists may be long. Assessments include measuring the child s language, motor skills, play skills, social skills and general development, and a specialised autism diagnostic observation schedule (ADOS) test will also be undertaken. Parents will also be interviewed to give as full a picture of the child s development as possible. After the assessment, parents will meet with the psychologist to discuss the results and recommendations. If you first notice that your child may be exhibiting some signs of autism after they have started school or pre-school, you can discuss your worries with teaching staff. Michele Fernandes, Principal at Discovery Mind International Play Centre, says, Parents and guardians are always encouraged to talk to us about any concerns they have. Most often, parents will ask to talk to a class teacher or myself if they notice anything that concerns them. Alternatively, a school may contact parents if they have concerns after observing a child. Michele Fernandes says, When we notice anything that might give us cause for concern, before talking with parents we observe for repeated patterns of behaviour or other areas of concern. Then, we discuss observations at a weekly teacher meeting and ask parents to come in for a talk at their convenience; we appreciate both parents coming in for these meetings so that we are all on the same page. We ask parents for their observations, if they have sought any help and what they feel is the right approach if they have sought help and have knowledge of what we have brought up. If not, we will offer suggestions, expert referrals and ask them to keep us informed. Michele Fernandes explains the school s involvement in the assessment and therapy processs. Class teachers do not diagnose as we are not professionally recognised experts, however we are involved in working together with any therapists once a child has had an assessment. Assessment centres or child psychologists will usually ask for our written observations about a child who has been referred to them. In some cases, a child may continue to receive therapy while continuing in playgroup with us. The written assessment report and regular updates from parents are helpful to teachers schools require these for admission/ placement so that they may continue to help and reinforce the child s development and progress. If parents do notice anything that gives them cause for concern, Dr Fischer strongly advises taking prompt action. He says, The risk of not doing anything is extremely high. The best time to get services is when the child is young. If you wait, the door can close on some early intervention results. While a wait and see approach might feel best for those who are uncertain, experts warn the impact of being passive can be serious. First steps to treatment Facing the unknown is difficult. Once a diagnosis is made, a personalised journey should be created for your child. Each child is unique and parents need to create a plan that will best serve their child. Dr Minna Chau, a child psychologist and centre director at Sprout in Motion, shares her advice for parents facing a fresh diagnosis. Sit with it. Don t jump into the first treatment programme you come across immediately following news of the diagnosis. Allowing that small but significant space to make such an important, but timely, decision is of great importance. It is advisable to take time to learn about the options and think through the best course of action for your child. As one mum kindly shared with us, It takes a village, and each child needs a different village. It will be different for each kid, be ready to try and keep an open mind. May