This is Autism Awareness month and I wanted to write a series of articles to increase awareness and to be informative. I live in Ontario, Canada and all references to wait times, money, etc are based on that experiences here. There are places in the world that are better and there are places that are worse.

I have often said that raising a child with autism is a lot like raising a child with super powers. They don't see things as we do, they don't hear, smell or taste as we do. They often have little control over their motor skills, but if you can somehow teach them control, they just might save the world. Take Ma and Pa Kent, raising a young super Clark who must have found his hearing and vision overwhelming. I would be sure that they, on occasion, likely often said in any autism household, wondering aloud, "How did he get that on the ceiling?" or “he did what with what? Is that even possible?”

Autism is a neurological disorder that causes sensory perception to be wildly different from that of a neurotypical child (that means normal but to say your child is not normal is not ... well, normal). They can have senses that are much more sensitive than usual or have problems getting their senses to work at all. What would you do if suddenly you could not feel your hands? You might flap them around? Hand flapping is a common symptom of autism. What would you do if every sound came to you as loud as if your Ipod was on full blast? Cover your ears? If that didn't work you might bang your head in frustration or shout out in anguish. But no one else hears it like you do so you are just having a tantrum in a public place for no reason. Would that be hard to deal with? Now imagine it every day, every minute of your life. Not sure I could deal with it, how about you? That child in the store wailing away as if the world is ending - might just actually feel like it is and he cannot turn it off or shut it off or make it stop.

Autism is a Spectrum disorder (ASD mean Autism Spectrum Disorder). As a spectrum disorder it means that there are so many variations of symptoms and manifestations that doctors have to and rule out before delivering a diagnosis. There is no blood test, no early screening before birth – and they have no real idea what causes it or why. There is a saying in the ASD community that if you have met one child with autism, then you have met just one. No two children are alike or exhibit the exact same symptoms. The characteristics of symptoms are categorized under Socialization, Behavioural and Communication (I will not list the symptoms here, but for examples see www.autism-society.org/about-autism/symptoms). The severity of the disorder can range anywhere from mild to severe. Conditions like Epilepsy and low Serotonin levels are often hand in hand with autism.

The last I heard, autism was now occurring in 1 out of 88 children. A recent report suggested to it is now 1 in 50 but I am not too confident of the data collection of that model. It really doesn't matter what the number is - it is getting worse every year. Getting help for your child with autism is not easy. We have waited a year just to get him into his first therapy program. It would have taken us two years to get the assessment done so we could be on the waiting list for programs. We didn't wait the two years of course, we ended up paying to have an assessment done, but that isn't an option for everyone. The cost of a private assessment is $2500-$5000 on average. I have heard of some people cashing out twice that amount too. If you want to skip the line and go privately for therapy, they you are looking at an estimated $60-$70k per year. Yes, there are a lot of people making a lot of money off autism. Oh, by the way, the Ontario government funding to help you with that is no longer available but there is a waiting list you can join if you want to see if it gets renewed one day.

There are many types of therapies and programs for Autism but the only one that the Ontario government will fund is called ABA (Applied Behavioural Application). It is an operant conditioning method based on training ASD kids to respond through a series of rewards. It has a 50% success rate as not every child responds to it. There is also speech therapy (More than Words) to help increase verbal responses and occupational therapy to help with gross/fine motor skills. Some combine all disciplines and teach it to the parents because we are with them the most (IMPACT). There are some that work on a change in diet (gluten/casein-free), some that work on massage and pressure points and even hug therapy. I am not going to say which is best and which isn’t because – all children with autism are different. If something works for someone else, who am I to say they are wrong? There are success stories of children learning to deal with their autism and so much so that they appear to be neurotypical to most. Some claim cured but that is not true, at this point no one is cured, but they can learn to cope, and learn to embrace their differences.

My son, Incrediboy as we call him here, is autistic and is on the mild end of the spectrum. We have taken the IMPACT and the More than Words programs to help him cope and I am happy to say that every year we have more progress with him. He begins Social Skills 1 today at Surrey Place just as he is beginning to ask to have friends over or play with other children. He is verbal now, starting to socialize and is dealing with his autism. He is only five so we have a long way to go, but we have come a long way already.

I started this article with the intentions of writing a series of informative notes on various topics that would help raise awareness and express some of my thoughts on the challenges. But I came to realize that I do not have enough time to do so and that given the choice between time spent with my family and writing, I will take family every time. This is one of the reasons I do not attempt to blog about my autism journey. There will be plenty of information and awareness posted today by others, and I encourage you to read an article or three. If you have a question, feel free to ask, if you are on a similar journey, feel free to reach out.

Ten things that my Son has taught me while I was teaching him:

1. People that judge do not think. They reach for judgement, hatred and fear instead of thinking and I do not have time to waste on people who do not think.
2. All behaviour is communication. Think about that for a moment because it took me awhile to understand what that means. My son has sensory perception issues, not a behavioural problem. His behaviour communicates the sensory issues.
3. Love is not a clean house, a well set table or a Rockwell painting. Love is accepting, honouring, hoping and being there to play Thomas yet again – without a “because”.
4. Sleep Deprivation can be dealt with a sense of humour, a strong will and a bit of whimsy.
5. I am much more patient than I have ever been in my life, either that or I have a thicker skin now. I would like to believe I am more open to new concepts and compassion. Unless you are getting in the way of my son’s progress – then all bets are off.
6. Trust my instincts. Doctors only have opinions, teachers work on a “typical” child approach and no one spends more time with my son than my wife and I. Never accept what the heart tells you is wrong.
7. Doing something is better than nothing. There are many ways that autism is treated and the disorder changes from person to person affected. What we are doing may not work for another, and so on. So I cannot tell someone that my way is the best way and no one can tell me that their way is the only method.
8. Giving up is not an option. My son will not give up. I will not give up. My family will never give up.
9. Being different can be beautiful. Normal is a setting on a washing machine.
10. Obi-Wan was right. Many of the truths we cling to depend greatly on our point of view. My point of view has been permanently changed by my son, and that is not a bad thing at all.