Mothering Through Autism

Words and Images by Isabelle Kohler

The story of my son’s birth still describes him to this day. It was high time for him to leave my body but he was not moving. I tried everything my midwife suggested: fasting, Indian bridges, sugar shock, drinking castor oil... you name it. I did it all. I was growing more and more frustrated until I was finally admitted to the hospital to induce labour. Two weeks after his due date, my son was born. When I first held him my heart exploded of all the love I felt for him.

He was a fairly easy baby and developed into a happy child. He was not showing too much of an effort to talk but other than that, he showed no irregularities at first. As he got older though things became increasingly more difficult. He was not getting on well with other kids, he refused to try new things, and he bit and scratched me and other kids - especially his little sister - when he did not get his way. Going to a party, family gathering, or a public playground became a nightmare and more than once we would all go home frustrated, exhausted, and in tears.

At home, we were reading everything and anything that we could find about whales and dinosaurs. He became an expert on how they were related, what they ate and their respective differences. When he was six years old he started school and with it, things got worse. His selfesteem was at an all-time low and frustration was part of all of our daily business. My smart kid who could not cope with the school system, was put in a track for kids with special needs.

He was already undergoing psychological tests but it took us more than a year to finally discover that my son is on the Autism Disorder Spectrum. He was diagnosed with a form that was first described by Hans Asperger - an Austrian pediatric, by the way, that my grandmother had actually met in person.

The diagnosis triggered all sorts of fears in me... how will he manage? How will I manage? Is he ever going to be able to live an independent life? The diagnosis collided with everything that I had planned out for my life.

But what does this diagnosis mean in everyday life? I think of my son’s autism as a social disability. Often I get asked about the special abilities that my son has. He was not born a Rainman. Yes, there are a bunch of things that he became very good at, an expert even, because of his special interests. But sadly, life in our world is sometimes very hard, tiring, and often lonely as he is misunderstood so often.

For most people social rules are easily understandable and also make sense. This does not apply to my child. I realised this the first time that I told my son to set the table. In full force he was telling me ‘no’, he was not setting the table. Until this moment we were having a good time and I was caught off-guard by his oppositional behaviour. Then I connected the dots and found out that he did not know how to do it. Even though we always set the table in the same way, he could not recreate it. He was grateful and also a little bit ashamed when I showed him what needs to be done in order to prepare the table for us to sit down.

28Another example of just not getting social clues is that my son did not understand the rules of the chase game that kids love to play. He never stuck to the rules and other kids were getting annoyed because for them, he was acting weird. It took me a long time to figure that out because the idea of not understanding simple rules from simply observing was not on my mind.

Another big social hurdle is the inability to read between the lines. Everything needs to be spelled out. In our communication we tend to use a lot of empty phrases. All of that does not make sense to my kid. For example, when I say: ‘We need to get there on time,’ I usually don’t have to explain what that means. My son on the other hand will not understand as this is not measurable and ‘on time’ is as vague as it can be. Saying we need to get there by 3pm makes more sense even though to be honest, time is not something that is easily comprehensible for him.

In order to prevent melt-downs and to improve cooperation, I completely changed my way of communication. I am as straight-forward as I can be. Being brought up by a very polite French mother on the one hand, and in a country that still clings to phrases from Imperial days that are long gone, on the other hand, that was a challenge. When I wanted something it involved phrases like: “Could you, if you, please, maybe ...” and so on.

I found out that my straight forward communication skills help me with neurotypical kids as well. I started to use as few words as possible to not lose my son’s attention while I explain why and how I think or feel about something. If you don’t know me, I might sound like I am leading an army but I get what I want in most of the cases. Instead of saying: ‘you need to get ready,’ I specify what that means. ‘Put on your shoes and jacket,’ for example. Sometimes it is necessary to push yourself even more. I learned that from attending a camp for autistic children. Another boy (also on the spectrum) wanted to visit our room and it was just not a very good time. I tried all tricks such as: ‘maybe later’, or ‘its is not a good time,’ and so on. The eager visitor would not drop it until I looked at him and said: ‘You are not welcome right now.’ Something, that otherwise I think of as being rude. But he finally understood and was not feeling hurt. I was feeling guilty, of course, but I learned that being clear and respectful is the way to go.

By the same token, proverbs cause the most interesting and sometimes amusing misunderstandings as people with autism tend to understand them literally. ‘To sweep something under the carpet’ may cause confusion as well as curiosity as to what really is underneath the carpet!

Living with my autistic son means living a life full of resistance. Resistance to learning how to ride a bike, resistance to changing from sandals to sneakers when seasons change, resistance to pretty much all new things. There is a lot of things one can manage beforehand. For example, showing pictures of the apartment you will spend your holidays at. You can generally talk about an outline of a day but you cannot control everything. Sometimes you will miss the bus, or you have to change from primary school into secondary school. I try to find a good balance between situations that can be controlled and do not hold any surprises, as well as the situations that need a little bit of flexibility. Like mixing up the order around the table and switching seats because we have guests. Sounds easy, but can be challenging.

The hardest part in parenting my son is to see whether he is well or not. He lives in a world of extremes. He is either well, which means literally nothing is a problem (including him managing to express his feelings) or if things are bad, they really are bad. He has high standards and cannot handle a mistake. Countless drawings such as Santa Clause putting him into a big brown bag because he has been ‘bad’ (a phrase I never use) prove that guilt is a big issue.

Thankfully, we have a network of specialists that still help us to this day. With their help my son gained confidence, changed into the regular schooling system, and knows how to order ice cream at the shop (first things first). Good and hard times come in waves. I try to never forget that, no matter if we have a low or an up at the moment.

What can you do when meeting an autistic child (or adult)? Try to apply all of the above, communicate in short and clear sentences. If you see that they struggle with rules, try to be kind and explain step by step how to behave and resolve the situation. Remember that most families and kids already have been through a lot, try to be kind and not judgmental about the ‘weird’ behaviours that a child may show. Most kids really want to do everything right and stick to the rules once they get them. They just need a little help to get there, as we all sometimes do.