Imagine living with someone you love dearly that makes you question daily why you have been cursed. Imagine serene family picnics suddenly turned to embarrassing screaming fits of rage for no apparent reason.
Welcome to the world of living with a child with an Autism Spectrum Disorder. For years the high functioning child may go without the diagnosis and the support they need and may fall behind at school. Up until a certain age they look and act like a normal child with albeit quirky cute behaviour but some things just aren’t right.
The diagnosis isn’t with a blood test nor simple observation. It requires painstaking analysis of their history from multiple sources across a variety of disciplines including paediatricians, psychologists, psychiatrists, teachers, parents and other child specialists.
The other less known effects are the impacts of reduced quality social interactions. For example, little or no friends, missing out of birthdays, reduced social development and quality group play.
Whether because of the increased reporting, diagnosis or “something in the water” autism rates are on the rise. Detection rate now puts ASD at over 2%.
The longer terms effects of ASD are; reduced education opportunities (despite academic brilliance being the norm in many ASD cases), the ASD sufferer is often socially immature or may lack friends or miss many social queues, anxiety, drug dependence, depression and high rates of suicide or thoughts of suicide.
A missed diagnosis early in life can result in a life of missed opportunities for the ASD sufferer. Often they seek out attention and friendship from the wrong crowd and can go on to a life of crime, homelessness or despair. Given the right opportunities however high functioning children can lead a brilliant academic life. Due to the obsessive nature of their minds they can go on to have particularly creative or technical careers. People such as Einstein, Mozart, Steve Jobs and Bill Gates are all suspected of being ASD.
Another aspect that needs to be considered is the way we talk about them. Maybe referring to them as sufferers and comparing them to a “normal” person is unfair, thus making anyone who is outside this norm as having a “condition”. This is an incredibly painful notion for anyone with any disability (another word I am reticent to use) either physical, or mental. Thus making the term “ASD sufferer” somewhat prejudgemental. While for the person sitting in the Autism Spectrum, they want be seen as anything other than as suffering from something, the right diagnosis can help their learning. From counselling, to modifying teaching practises, and training the parent in raising them, can greatly improve quality of life.
The stigma attached to ASD and other behaviours over flow onto the parent. A raging child is often labelled as spoilt or naughty and the parent inconsistent, bad or not being able to control their child. Parenting a child with ASD can be tough due to the small triggers that can send the child into a rage. For example the wrong plate or clothing colour, something happening in the wrong order or some request being unfulfilled. Often the unknowing parent raises their own anxiety and intensity levels to match the child, often making the situation worse. A non ASD child learns through both positive and negative reinforcement about appropriate behaviour, but the ASD child won’t make these connections easily, if at all, unless taught a different way. The same can be said about every aspect of their learning.
Specialist skills can be taught in isolation to prepare them for life; for example resilience, self regulation, communication norms, and safety. As teens they can be taught more transitional skills such as independence, personal care and food preparation.
As a society we must be more tolerant, less judgmental and display more understanding to families with ASD children. This helps to reduce the stigma, lessens the harmful effects of bullying, and allows them to feel more normal, thereby reducing its impact on the individual.
I have written this to raise awareness on the plight of raising children with a ASD. Often its an invisible thankless task with zero support. Don’t be the one out in the public who misjudges a situation and makes parents feel worse.
For people with children who have or they suspect of having ASD, here are some useful support links: