As you no doubt have heard, today, April 2nd, is Autism Awareness Day, leading into Autism Awareness Month. There is a hot debate going on whether you should be wearing blue or walking in red, but frankly, the colour of my shirt is not going to play into Incrediboy’s progress and I have never been much of a joiner. Yet, raising awareness of autism and the issues of autism is very important. It is a very misunderstood neurological disorder that is shrouded in myths and false information. All parents of a child with autism have come across these myths, dealt with them, even fell for them or accepted them whole-heartedly as the truth. I could go through a list of them all but I’ll focus on those myths we have come across during the years that Incrediboy has been in our lives.
When someone says something to you that is a myth or is false, you can’t help but feel a bit angry. You wish that people were more well informed and that they wouldn’t open their mouths and suggest things that are in no way helpful. The truth is, however, that most of the time, they are trying to help or trying to reach out. But when you as a parent hear these myths bandied about (for the hundredth time) – you just want to slap the speakers. We don’t (or we shouldn’t) actually do it, so I like to call these Myth-slaps. Myths that I wish I could slap into oblivion. Here are a list of ones we have heard in connection with our son:
Myth-Slap#1 – “Oh he is doing so well. He is cured now.” Or “He will grow out of it, won’t he?”
No. There is no cure for autism and I don’t think there ever will be one. You can teach someone to cope with their ASD, to manage or mask their symptoms and to fake being “normal”. They can do such a good job of acting “neuro-typical” that you would have a hard time noticing that they aren’t but it is just that – an act. The “difference” is part of them and will always be part of them. They do not experience the world the same way and many adult autistics have said they are just doing what they have to in order to pass as “normal”. This is something that needs to change, so the people with ASD can be themselves and be accepted for who they are. Remember – “normal” is only a setting on a washing machine.
Myth-Slap#2 – “You can leave him with us! Don’t be such a worrier”
No, we cannot just leave him with the neighbours’ kids and relax. Yes, he seems just fine, a bit loud, kinda awkward but basically fine, right? Except that can change in a instant. The aspect of autism that is most commonly misunderstood is the perception of senses. Simply put, they do not sense the world the same way as other children. They can be overwhelmed by loud noises, bright lights and strong smells. Once they are overloaded then they may struggle to control their reactions. Hand movements may became erratic or they feel pain or numbness and want the feeling back. In this state, they can lash out at anyone or anything in trying to get the feedback they need to make sense of the world again, (Ever have that sensation of falling when drifting off to sleep? Imagine not being able to shake off that sensation. Ever). They could hurt themselves, or the kids around them or any object they can get hold of – and they are unable, in that moment, to control it. So when we decline a birthday party invite or a chance to let them play in your backyard so we can have some time off – we refuse not because we are anti-social. We refuse because we know how to handle a meltdown and you don’t.
Myth-Slap#3 – “Prepare yourself. He may never talk and will likely never have empathy or show affection”
I know the doctors are just trying to give the news in such a way that we don’t develop false hopes and there are many families for whom this is true. It is a spectrum disorder and the ones on the far end of severe are very difficult to help at the best of times. We are very,very lucky to have a son on the mild end of spectrum and there are families that would do anything to be in our shoes. Still, we learned very early in this journey to never believe that a doctor or professional of any sort knows Incrediboy better that we do. We are his parents and our hearts guide us more than anything else.
Myth-Slap#4 – “What is his special gift? You know like Rainman?
I have grown to hate that film. The percent chance of someone with autism developing a savant talent is the same as a neurotypical’s and it is very low. The media loves to play up the ones that do but you can drive yourself crazy looking for a savant talent that is not there. Incrediboy has an amazing memory. He has memorized all the countries in the world, their flags, the capital cities, all the US states and Canadian Provinces/Territories. That is not a special talent but a singular focus on something that interests him. Many people on the spectrum have a singular focus, such that they memorize incredible amounts of data about it and can relate it to you if you sit near them long enough. But anyone can do it if they are willing to be so focused. That is the difference, the ability to focus on something you like so much as to shut out everything else. If we can turn that focus into a basis of a career – that would be lovely.
Myth-Slap #5 – “All he needs is a firm hand and a good swat on the behind”
Yes we have had people say this to us, more than a few. Usually folks who have no tolerance for noise or disruption in their lives and feel that if your child cannot stay silent you should not take them out. Well, you can’t beat autism out of a child. The outside world is a very scary place for someone with ASD, with sounds, lights, smells and it is hard to sort out. Sensory overload is around every corner and it is tough on them. But if we didn’t take Incrediboy out into the world, how is he going learn to cope (or show off those new coping skills)? We continually struggle with this, he is currently in a “no go” mode about venturing out and we are forced to start again with small steps towards going out into the world. A child who won’t go to Toys are Us because it is scary – think about that for a moment.
Myth-Slap#6 – “I heard about using X and they said it gets great results.
Gluten free? Hug Therapy? Bleach enemas? Yes we have heard of them all and some of them might work for others but the ABA therapy we are using right now is working and working well. As I said before, many people are dealing with the far end of the severe spectrum and I do not fault them for looking for an alternate answer. ABA at its best helps 50% of kids with ASD, yet it is the only one sponsored by the Ontario government. So if it doesn’t work … Yeah I would try something different too. There are a lot of people making money off autism and they are not all helping. If we could change the way autism is seen in the world, the news and the people – fostering acceptance and awareness, then things would not be so desperate. Another common myth is that you have to get therapy in the first five years or that is it – game over. That is not true, the brain develops past the age of five and research is showing there are other peak learning times beyond 1-5.
So those are 6 myths that I wish I could slap into oblivion. I hope that one day we can accept all people as they are and not as they are supposed to be by some socially accepted concept of normal. Incrediboy has enriched our lives so much in the seven years he has been here and I am sure he will keep on filling us with joy and wonder. So read some blogs, grab a book, watch a youtube video and become more aware of autism and what it is all about. Normal should remain on the washing machine, but our world deserves so much more.