In my career to date, I have only seen and cared for a handful of South Asian families where their child has been given a diagnosis of autism. Whilst every autistic child is different, what I have taken away from interacting with these wonderful families is that the diagnosis has always been a surprise and has always been devastating.
We have spent numerous consults discussing what the diagnosis means, how to best support their child and navigate not only the complex Australian health care system but also the bureaucratic machine that is the NDIS, and finally ‘what does this mean for my child? Can they live their best life?’.
The simple answer is that every child develops and makes progress on their own timeline, and the best that we can do is to support them with the right therapies along the way. One of the most challenging questions I get, is how to explain autism to family members, especially the extended family, and whether there are any alternative ‘treatments’ for this condition.
In this article, I will do my best to provide an overview. However, if you do have any concerns regarding your child’s development, the next best step is to see your GP for a chat around if any further referrals are necessary
What is autism?
Autism is the name given to a neurodevelopmental disability which affects communication, how information is processed and how people interact with the world. We use the term ‘Autism Spectrum Disorder’ to highlight that individuals can present in many ways. It’s often helpful to ask a person with autism as to how they would like to be referred to. This condition affects 1-2% of Australians, and can often run in families. The genetic associations are still being studied. As it is a condition which often presents with developmental delay, early intervention with speech therapy, occupational therapy and psychology can be beneficial. As a paediatrician, I look for concerns in key areas of development – specifically issues with social communication skills and restricted/repetitive behaviours.
What should I look out for if I’m concerned about an autism diagnosis?
An important thing to note is that autism cannot be diagnosed in a baby. Having sensory issues e.g. disliking certain textures/foods/sounds is also not diagnostic of a neurodevelopmental disorder on its own. As your child gets older, you may notice a delay in language or an unusual manner of communication with adults and peers. Some children may not use nonverbal communication like pointing, or eye contact, in the way that we would expect. They may also not respond to their name. Some children may require a strict routine to feel comfortable, and any deviation may cause distress. Many families also notice repetitive behaviours e.g. wanting to play with the same toy in the same manner, with limited capacity for imaginative play. Restricted/repetitive behaviours can also include repetitive body movements or the copying/mimicking of sounds/words that have been heard – this phenomenon of copying words is known as ‘echolalia’.
Your child may present later in primary school. Often children in this age group start to experience difficulty in relating to their peers. Changing from one activity to another, or dealing with change can be particularly challenging for children with autism. They may also have a hard time with external sensory inputs – a loud noisy classroom with bright lights can potentially cause discomfort which might present as poor behaviour or falling behind in their class work. Adolescents with autism often verbalise feeling like they have had challenges with friendships, feelings of constant worry or anxiety, and often have a special interest.
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What can autism look like/coexist with?
Attention deficit hyperactivity disorder (ADHD), Intellectual disability (ID) and anxiety often coexist with a diagnosis of autism. Eating disorders and language delays are also common comorbidities. Paediatricians will usually organise blood tests to check that there is no underlying medical/genetic reason for your child’s developmental delay – this includes checking iron, B12, thyroid function, and some basic genetic blood tests amongst other things.
What to do once an autism diagnosis is made?
The gold standard (ideal way to make a diagnosis) test is done by a group of clinicians (usually a mix of psychologists, speech therapists and occupational therapists) who have observed your child over a period of time. This process usually also involves talking to your child’s daycare/preschool or classroom teacher. It is not usually a diagnosis made on the first visit, unless the severity of your child’s symptoms might be high enough to do so. Once a diagnosis is made, the supports you have are guided by what your child needs are – for example, your child may require support with their emotional regulation, speech and toileting skills. Your doctor can help support you with applying to the NDIS and discussions around schooling and whether your child may require additional school supports
There are no medications available for autism. However specific medications may be needed if your child has one of the coexisting conditions listed above. It’s also important to note that some parents may feel guilty and want to know if there is anything they could have done to prevent this from occurring. I usually spend much time with families reassuring them that this is not the case and they could not have done anything differently. It may be useful to reach out to community groups and online resources. I also explain to families that every child will make progress with their development on their own timeline, but it’s not something that we can predict with any certainty. Having more open conversations in the South Asian community about what autism is, can also help reduce the stigma that may be associated around this condition – many parents express to me that they have received criticism around their parenting skills due to a lack of understanding in the wider community.
