I AM A teacher, a therapist, wife, daughter and, most importantly, the mother of a brilliant, creative, funny, active six-year-old girl who happens to have autism.
In many instances, people cannot recognise my daughter as autistic, just by looking at her. In fact, the most common comment I get is that “she doesn’t look it.” I usually must tell them that she is, as a way of explaining certain behaviours or responses she may have and I further explain that autism does not have a “look.”
Even amongst those in the autism community, her challenges are misunderstood and so too are our challenges as her parents.
An awareness of the hidden challenges that many children and people experience on the autism spectrum is crucial if we as a society hope to really understand and accept differences in individuals and participate in inclusivity in all areas of life.
According to Davis Autism International (2016), autism is described as a spectrum disorder, because those on the spectrum are affected in various ways and to differing degrees. Indeed, no two people on the spectrum are alike. There may be similarities to the condition but, just as neurotypical individuals differ, people on the spectrum differ as well.
In the case of my daughter and many girls on the spectrum, one of the hidden challenges she faces is severe anxiety. Anxiety is not a clearly visible condition and often goes unnoticed by many. Of course, this anxiety presents itself in many ways. Most people think they would know if someone had anxiety, after all we have all felt anxious at some point or another.
For my daughter, anxiety mostly manifests itself as violent or aggressive behaviour. The assumption then is that we must not have taught her how to behave properly, or that we “spoiled” her. What people don’t see are her efforts at maintaining calm or her becoming increasingly distressed by overwhelming noise or sounds, or her agitation at being touched in a way she cannot tolerate (this is a sensory processing disorder).
Social anxiety is one of the more common types of anxiety that can exist in varying degrees for those on the autism spectrum. As environments become more socially demanding and more is expected of them, their anxiety heightens. Many people on the spectrum lack the necessary social skills for “fitting in,” so that knowing when to speak, understanding jokes and understanding hidden meanings can be difficult for people with autism.
In my work as a teacher and as a therapist, I recognise anxiety in individuals when I see it, but more so because of how much my daughter has taught me. I have learned to show empathy and compassion when it seems like she least deserves it.
This, I believe, is one of the most important lessons our society and parents of children on the spectrum must learn.
Instead of focusing on “right” or “proper” behaviour, we first need to focus on what our children need from us. Showing understanding and compassion in the face of their worst behaviour is not encouraging children to behave badly. It is an effort to figure out what they need most, finding ways to communicate with them and helping them to solve their “unsolvable” problems.
Most importantly, parents with children on the spectrum must become aware of and understand their children’s hidden challenges. It can be very tempting to impose punishment in an attempt to get them to behave more socially acceptable. In my work with such parents, I assure them that this usually does more harm than good.
One of my daughter’s first therapists told me that sometimes, to help her, we have to do what seems counterproductive to “good parenting.” It was the best advice I ever received.
What her therapist meant was that we had to look behind the behaviour for the reason. Our daughter needed us to understand how severely her anxiety affected every aspect of her life, even if she couldn’t explain it to us.
Once we started showing empathy in those situations that would trigger her anxiety to go into overdrive and trying to help her problem-solve, we saw progress.
Let us be aware that individuals on the autism spectrum experience several hidden challenges and that anxiety is just one of these comorbidities.
Crucial to our development and growth as a society, if we are to continue to lobby for inclusion of children with special needs, are the availability of information and the willingness of individuals to learn more about these challenges and become inclusivity minded. Only then can we speak of progress.