‘’If I think back I knew there was something not quite right from then. He started at the speech therapy and had been there a few weeks and one of the other mums said to me, “Do you think he might be autistic”. I have never even thought of it. I thought that there is something not right, may be he has got learning difficulties but autism is a condition I hadn’t considered at all. And then I started looking into it and realised that he had all of the criteria listed for autism. And I thought well he must be. So in a way when we actually got the diagnosis we were kind of prepared. We were quite expecting it and from then on that meant that we knew what we were dealing with. It must be frustrating for people to not have a diagnosis for the child’s condition as well. Because it means you don’t really know what you are dealing with but as soon as you have you start looking into how is it going to affect them. What can I do to help, how can I start to understand what they are doing, why are they doing thing, you know it is sort of why is he spending hours just lining things up and it was just his way of getting a bit of order into his life I suppose ‘’
Account from a parent
In order to understand autism we need to first understand the basics of human communication
Let’s say you just saw a pretty flower and you want to share your excitement with me. First you need to have the will to want to interact with me, then you convert your thoughts into meaningful sentences. At the same time your facial expressions, gestures and tone of voice helps me pick up that this is something you find very exciting. By my reply and facial expressions, you are able to figure out the subtext, that I am not really interested in the flower, although I am not explicitly saying that because I am being polite. All these elements mix together to form human communication which goes beyond plain speech into hidden rules, use of body language and stems from the urge to interact with others.
Let’s say your child gets amazed because a big red bus just passed by. He has not yet mastered language well enough to put that into words but looks at you and points to it so he can share the excitement with you. Joint attention is an important element of social communication by which we share our feelings with others. I find something interesting and I really want to share that with you. This is very different from the child trying to use you as a tool, like for example pointing to the bottle so you can get his milk.
So what is autism?
Being autistic does not mean having a disease. It means your child’s brain works in a different way in the way they experience life and others around them. This mainly affects the following aspects
· Communication – ability to use language, along with facial expressions and gestures
· Social abilities – the urge and ability to interact with others and share experiences with them
· Behaviour – they may have habitual or repetitive behaviours
What is the cause?
It is not clear what causes autism. We suspect that genes play a role as tends to run in families. There is research going on about environmental factors that may contribute into the development of autism. Some parents are concerned about a possible link between vaccines and autism. There have been numerous scientific studies which have not shown any link between the two.
Signs and symptoms
Although the child’s difficulties are often present since birth they are usually noticed by parents after the first birthday where the start becoming much more obvious.
Some children never develop the ability to speak while others have poorly developed language in a way that they are unable to maintain a simple conversation. They may repeat what they hear others saying (echolalia). Others may take things literally and be unable to understand the rules of conversation.
They may be socially withdrawn, not keen on interacting with others (for example starting a conversation or making eye contact), do not share experiences with others (joint attention as explained above) and appear totally uninterested of their surroundings. It often feels that there isn’t another human being in the room.
They may have a narrow repertoire of interests and activities. They may be fascinated with a particular subject only (for example numbers) and insist on sameness. Around age 2 children start playing with toys in ways that are varied and start using their imagination and creativity to make stories, where children with autism may be attached to non-toy items like a pen or a paper roll, or use the toys in unusual manners (line then up in a raw, spin them around).
They may have unusual sensitivities to everyday sounds, smells or textures. For example, they may get distressed every time they hear the mixer.
Autism is a spectrum.
Every child with autism is different. Some have high functioning Autism which means they need little or no support. Others need help with daily life because they find it hard to look after themselves. Autistic children can have any level of intelligence. Some have above average intelligence while others have a learning disability and need help to progress at school.
Will my autistic child live a happy fulfilling life?
Being autistic does not stop you from experiencing life in a full way. Autistic children have things they're good at as well as things they struggle with and this is actually true for every one of us. People with autism can too make friends, have relationships and get a job. But they might need extra help with these things. It is impossible to predict a child’s future adult abilities in early childhood.
Will my other children have autism too?
If there was no history of autism in your family a child’s risk of developing autism would be 1%. If you already have a child with autism that risk is increased to 3-7 % that the same disorder will occur to your other children.
How do we make the diagnosis?
There is no laboratory test or imaging modality like let’s say brain MRI that can make the diagnosis although these tests are sometimes performed to rule out certain medical conditions. The diagnosis relies on the presence of a constellation of typical symptoms. The diagnostic process involves taking a detailed history from the parents and observing the child’s behaviour. There are specific diagnostic tools (like ADOS 2) that assist in this process.
Thinking about labels
Diagnosis is an issue with two aspects. Some parents are against their children being labelled as ‘autistic’. On the other hand without the diagnosis, their child might not get the right support. Some parents felt that having the label meant that teachers had to take notice of their children in school. As one parent commented “There is no point in saying your child has just got behavioural difficulties because that doesn’t get you any sort of understanding or any support in the classroom”. Having the diagnosis also helps get financial support.
How can we help a child with autism?
As no 2 children with Autism are the same, the approach that is appropriate for one child may be different for what is used for another. Plans are individualized based on each child’s needs.
Young children with autism need specialized services aimed to help with development of communication and social skills. This is usually led by speech and language therapists, occupational therapists as well as other professionals. Some commonly used approaches include Applied Behavior Analysis (ABA) and TEACHH (treatment and education of Autistic and education handicapped children). These interventions need to be intensive (up to 25 hours per week for 12 months per year). Parental education is also crucial so they can assist in promoting their child’s social skills at home.
Early start of such treatment will improve a child’s ability to function more effectively later in life.