When I first became a pregnant, I worried. Like most new parents I had the concern. “What if something is wrong with my child?” For many people Down’s Syndrome, Cerebral Palsy among other disabilities are at the forefront of their concern. We all want our children to live happy, healthy or productive lives and worry that these conditions could put that in jeopardy. These are real issues and real worries for parents but I have found that mostly the fear comes from a lack of understanding. In my work I have had the pleasure of working with people with many types of disabilities. I found that children and families can thrive with many challenges given the chance and a little acceptance. After all, no child is perfect and everyone has things in life to overcome.
While I know these words to be true, if I am being honest there was one thing as a mom-to-be that scared the heck out of me. I was petrified of having a child with autism. The idea of having a child that I couldn’t relate to or that I couldn’t communicate with scared me silly. The whole reason I wanted to be a parent was to connect and mentor a life with all the joy that it brings. It was all about me and what I wanted as a parent.
I remember when my children hit their 2nd birthdays and were talking, socializing and behaving more or less “normally.” Working in Mental Health I knew that most severely autistic children show signs of social and emotional delays pretty early. So I felt like my family was in the clear. It was a huge relief but also one that I felt ashamed to admit.
It was about this time that I started working with families in a psychiatric setting. In my interview I was asked what types of issues did I feel the least comfortable working with. I said “autism.” I told them of my discomfort and how I planned to address it. I think I may have had some lame answer about being open minded and willing to learn. Really I was freaked out. How could I help families with children cope with something I didn’t understand? How could I be any good to someone that was dealing with something that scared the heck out of me. I got the job and thankfully I learned.
Quickly I was working with families of adolescents with autism. I realized how my own preconceived ideas about the challenges of these families was very wrong. It is easy for us to think of autism as the child freaking out in the grocery store, or the child in your kid’s class that seems to just start screaming or worse yet punch your kid in the nose. Autism can be all of those things, or none.
Some children with autism can be stubborn and have extreme temper tantrums when things fall off the rails. This can create fear and judgement from society as a whole. Many families I have worked with have had Children’s Services called when a well meaning but uninformed neighbor called to report what they thought was an abusive parent when the parent was actually trying to calm their child down. This is an extreme side of autism. More often than not these families find a way to manage and understand each other’s needs just like the rest of us.
On the other hand our society sometimes glorifies autism thereby dismissing the real struggles of the individuals and families that deal with the disorder. The Sheldon Cooper, or Rain Man references come to mind. Autism can be these things as well but often these are just our society’s way of dumbing down a real issue. I have heard many people and celebrities talk about Asperger’s (a high functioning form of autism) as a desirable trait so much so that many try to self-diagnose their quirkiness as “Aspy”. This isn’t a helpful view of autism either.
I believe that education is a helpful tool in acceptance and understanding. So here is my meager attempt to describe what I have learned about autism. Keep in mind that there are many experts out there on this issue and I am not one of them. Here is what I have learned.
- Autism has a vast spectrum of symptoms. It also varies widely on its functional impact on a person’s daily life. It can range from someone who is just “quirky” to someone that never speaks and has difficulty with daily functioning. Some of the characteristics of autism include communication issues. This can range from an inability to communicate verbally to a more socially awkward disconnect.
- Difficulties reading social cues. One of the more difficult symptoms to pinpoint is the difficulty with social interaction. Some people with autism struggle reading social cues or understanding the subtlety of social interactions. This can take the form of mild or odd interactions with people or in its extreme form a social isolation. It is not that autistic people don’t desire social interaction, just that it can be difficult for them to understand. They often struggle with sarcasm, reading facial expressions and boundaries. This can lead to misunderstandings and uncomfortable interactions.
- Repetitive movements. Many people with autism also have repetitive movements. This is usually more pronounced in early childhood. The extreme forms of these movements such as rocking, head banging or hair pulling often get noticed by outsiders. This could be a way to communicate frustration or a way of self-soothing when overwhelmed. Less extreme examples are more difficult to pinpoint such as mild rocking or twitching.
- Developmental or emotional delays. There are sometimes developmental delays or gaps in learning but not always. One classic symptom of autism is a rigidity of thought and an obsessive nature. This is where you can see some people with autism as quite brilliant in a particular area of life. Some think very deeply about things and have extraordinary ways of seeing the world around them. The effect is that some autistic minds are quite exceptional at one thing or another. So some high functioning people with autism are often really talented or smart about science, math or other things that involve complex patterns. This is often the more glorified symptom of autism. It can be a fascinating and highly valued asset unless the obsession is with Pokemon or My Little Pony instead of science or math. The down side of the obsessional thinking is sometimes this leads to a delay in other areas of their life which can stunt their emotional and development maturity.
- Sensory sensitivity. Autism also often comes with a sensory sensitivity. The theory is that people with autism have brains that process information fundamentally differently. Instead of filtering out useless information they process all the data coming in through their senses. This means they can be extra reactive to sensory overload. Think of standing in a room full of screaming children for a few hours and you can understand what sensory overload means. New settings, unfamiliar routines and loud environments can be difficult and for some people with autism can lead to extreme emotional reactions. Mostly this is because they feel unsafe.
One client I worked with described his brain like a computer. He was a Mac and he saw the rest of the world as PCs. We just fundamentally work on different operating systems. This is an analogy that often comes to mind when I am working with parents. A Mac and a PC are capable of communicating with each other. It can just be a bit glitchy.
I am not afraid of working with people with autism anymore. A little understanding goes a long way. People dealing with autism deserve compassion and understanding just like you and me.
Strangely I have found that it is not often the person with autism that has the problem with their autism. As they grow, learn and cope they can be content with their lives just like the rest of us. It is often the rest of us that have the problem with how their brain works. We try to find ways to fix them or change their behaviours. In my experience, trying to fix anyone is not very productive. No matter who you are and what your life challenges, change always comes from within.
If you are interested in knowing more check out Temple Grandin’s TED Talk on autism or visit the Autism Society of Alberta‘s website.