By Andriana Simos.
Father of three, Charlie Sleiman, speaks openly and truthfully about having a son, Josh, who was diagnosed with autism at the age of two. Seven years later and Charlie continues to be amazed by his son as he charges through his challenges with the determination and maturity of a man double his age.
1. Tell me a little bit about life with a child who has autism.
Very interesting. I’d never been exposed to the world of autism before having my son. For me, I thought it was what everyone else thinks- pretty much what you see in the movies and what TV leads you to believe. It’s nothing like that at all. There’s no point reading about someone’s experience with autism as it’s almost not going to apply to your situation. It’s that unique. Being such a wide spectrum, the needs and challenges of two kids that have autism can be completely different. I guess it’s about learning on the fly, being open to things changing at the last minute, it’s being very patient, developing routines, understanding how to communicate. As a parent, it’s also important not to treat the three kids differently. It’s fascinating. Just when you think you’ve got it figured out, something will come and shock, surprise or even frustrate you.
2. Are there any hardships?
In the beginning there were quite alot. Mainly because we had never experienced this world before so it was frustrating for us not understanding what our son wanted, frustrating for him not being able to communicate what he effectively wanted. Once we were able to really understand and interpret each other’s signs and symbols and body language, we were able to communicate better.
The other hardships came with just understanding that routines are a big part of everything and sometimes, when you like to do things spontaneously, that doesn’t really exist in our world. It’s really just the challenges of learning what does and doesn’t work. It’s not something I’d change though because it teaches you a lot about yourself as a person.
3. Of course there are so many positives too. What are they?
Just seeing the achievements, watching your child battle through their challenges and the big smile on their face as they overcome an obstacle. Some of the things my son is brilliant at just blow me away. I can give him a movie name and he can tell you the year it was made, who starred in it, the genre… really fascinating stuff. Watching him go about his business in a totally different way to the way his sisters do it, is just an amazing experience.
4. Do you have a favourite moment that you’d like to share?
When Josh was younger he hated loud noises and anything that really stimulated the senses really sent him into overdrive. We stayed away from environmental situations that really peaked his senses. About two years ago, we took him to a concert- lots of loud music, lights, cheering and clapping. Josh had his headphones in but watching him get up and dance was pretty special.
Another favourite moment was when he used to do swimming lessons. He used to get under the water, splash his face, all that sort of stuff. But he always used to swim aided. Last year he developed the ability to start swimming by himself. It might not seem like a big deal but watching him and his challenges up until that point, to be able to have the confidence and freedom to be himself said a lot more to us about where his mind was at than just the ability to float on his back or swim. It was a mental obstacle that we felt he had overcome.
5. Was there a moment in your life when you realised you really needed to stand up for those with autism and raise awareness about autism? What was it?
There are two moments I can think of. Firstly, my son’s diagnosis and just seeing how little there was available in terms of help and support for the parents and for the kids. We found that it was just a matter of speaking to people- friends, relatives, doctors. You had to be pushed in certain directions or otherwise you wouldn’t be able to find that kind of support. Some of that support was quite beneficial for us. I took it upon myself to start educating others that it’s not the end of the world. Just because there’s no support out there, doesn’t mean it doesn’t exist. It’s just a matter of asking the right people and knowing what questions to ask. So for me, that kicked off one part of the process.
The other part was my neighbour. I was outside one day cutting the grass or watering the plants and he said to me: “Sorry to hear about your son.” And I was thinking to myself, “He’s not dying. It’s autism, it’s not terminal.” I don’t blame him but obviously there isn’t enough education out there for people like my neighbour to understand the true impact of autism. It’s not a sickness. It’s not terminal. It’s just a way of life. It’s no different from someone that loves skydiving or a chef that loves cooking food. It’s just the way the brain’s wired.
6. Why do you think it’s important to raise awareness for autism?
Awareness if one of my biggest things because I don’t want my son to be judged before he opens his mouth. At the moment there is this stigma around autism- that everyone with autism is the same, everyone has the same symptoms, the same challenges, everyone needs the same treatment. It’s not that at all. Some people diagnosed with autism can function better than you and I in society. Others need a lot of help. The spectrum is so wide that there is a massive difference in abilities. So when someone hears autism, I don’t want people to automatically think they are at the bottom or the top of the spectrum, or just assume that they think they know what the person is capable of. In reality, no one really knows. So awareness is really important so that people can know that an individual is more than the autism label.
7. Do you think there is still a stigma towards people with autism? Why/why not?
Absolutely. Why am I so sure? Because I’m not a judgement person and even I thought I knew what autism was even before I had been exposed to the world. There’s a lot out there that could easily mistranslate what autism really is.
8. Do you think this will change?
Yeah I think it will. I see it changing at the moment. Things like World Autism Day and Autism Awareness Month are fairly new initiatives. It seems like the world is becoming a bit more accepting of raising awareness and making people aware of what autism really is. You have TV shows that are centred around a perspective of autism- The Good Doctor for example. So it’s definitely out there and it’s becoming more prominent.
Simos Standpoints 