Each April 2, the United Nations commemorates World Autism Awareness Day. This global initiative kicks-off Autism Awareness Month and helps raise awareness about Autism.
World Autism Awareness Day is about more than generating understanding; it is a call to action. I urge all concerned to take part in fostering progress by supporting education programmes, employment opportunities and other measures that help realize our shared vision of a more inclusive world.
Secretary-General Ban Ki-moon
Message for the World Autism Awareness Day 2014
You probably know an adult or a child that has Autism. My family has 13 grandchildren and statistically speaking, one of them would have likely had Autism. My daughter plays volleyball and soccer and so we meet many other families. We know of at least 3 other families that have boys on the Autism spectrum. Those odds seem staggering to me but it is more the norm than you know.
Did you know that Autism is classified as a spectrum disorder? That means that there are varying degrees of how a person is affected. It can range from mild to severe with each child showing different symptoms/traits. So in reality, no two children are alike in my opinion. It is estimated that one in every 88 children is born with an ASD. There are approximately 200,000 Canadians living with ASD. The Autism Society of Canada has a great two-page information sheet on common questions about Autism. You can find out more right here.
I was asked to write this post about Autism because my son is on the spectrum. To be honest with you, it is not a secret. My family and close friends know. Many of my blogging friends know. His school knows. His elementary school classmates know. But many others don’t.
I don’t know, I guess there are times that it is not an issue. He presents like most normal 12 year old boys: he loves video games, he is indifferent to girls, he likes to annoy his sisters… you know typical stuff.
But then there are those moments… those small…insurmountable… definable… moments that made it very clear that he is on the spectrum and that we have to handle him differently than our two girls.
Those moments became apparent to a speech pathologist when he was two and a half years old. H. was there to work in a group setting to build his speaking skills. She noticed that he did not enjoy playing with others. He did not know how to play with others. He did not stim, he did not avoid eye contact (completely), walk on his tippy toes. He did not show ‘typical’ ASD characteristics. He did however seemed to be in his own little world. We later came to understand that he had sensory processing issues. But in the beginning, his anti-social behaviour was just on someone’s radar. Intuitively, I had a feeling something was amiss. I had had two other children that had never shown these developmental differences… but hey, he was a boy… there were built differently I was told. I only had two girls so I had no benchmark to refer to. I ran into my pediatrician years later and she said to me… see all along you thought he was autistic and he wasn’t. She was the first one to make that mistake.
As he grew up and was in school, he had a crisis year. He started to lash out. He started to hide under his desk, he started to hide in the school. They thought they had lost him once. They hadn’t he just needed to be alone, away from others, from the chaos, from the noise, form the structure, from the ‘orders’ the teacher was giving.
We went to see specialists: an MD that specialized in ADHD and ASD; then a Children’s Center (a social worker, a psychologist). We then saw a psychiatrist – two in fact. One that actually wanted to know what I was doing wrong. What I did to make this happen (don’t even get me started about the amount of therapy it took me to get over thosehurtful hateful words).
All of these people had an opinion: he had ADHD, he did not have ADHD. He had Autism. He did not have Autism because he had ADHD. They are mutually exclusive (not so, it turns out). He had Oppositional Defiant Disorder (a behavioral disorder). He had Sensory Processing Disorder. He had learning disabilities… he had some traits but not all. He had… he had… he had…He was … he was… he was… many things but no one ever seemed to say he was ‘normal’.
Once we were lead to a dedicated psychiatric professional (only they can diagnosis ASD and prescribe medication if needed), we have had a very successful time managing this with him. No, he did not have ODD. Yes, he could have ADHD with ASD. Yes, he did have sensory issues. Yes, he was on the spectrum. NO we are not crazy and NO you are not at fault.
He helped us understand what we needed to worry about (support from our school, school board, teachers and resource support team) and what we didn’t (his limited ability to form friendships, some social skills – he doesn’t need to be a perfect child etc.). He also gave us the confidence and tools to work together as a team to help H. succeed in life.
Fast forward 5 years and you would be hard pressed sometimes to say he wasn’t just a normal kid. But you must remember, there is no ‘cure’ for Autism. It is with you forever – you just have to learn how to cope with it. You have to teach your child how to use different strategies.
As I said, we are very lucky our son has a mild form of Autism – PDDNOS – Pervasive Developmental Disorder, Not otherwise Specified. That just means that he has some traits but not all traits yet enough to know that he needs help at school sometimes. That he might have awkward moments in social situations. That he had to learn about personal space. That his obsession with trains was pretty typical.
I am writing this post so you can understand that the line to diagnosis is not always a straight one. It is not easy and it is not ever over. What it is, is a hope that if you feel there is something that is ‘not quite right’, you pursue it. ADVOCATE for your child. Make sure that he or she receives all the support that they are ENTITLED TO IN SCHOOL. His biggest support and school advocate was the woman you see here with H. She made a world of difference to his success. We are indebted to her for supporting us at every turn and helping H. understand his strengths and limitations. Getting people like N. to help is essential.
As a parent, my\ biggest worry (and I am sure of many of my family and friends) was that there would be a LABEL on my son, a target on his back, smudge on his records.
The best thing we did was to embrace that Autism label because it made us advocate for the help that he needed to succeed in school. We don’t shout it from the rooftop that our son is on the Autism Spectrum because he is just like so many other kids that have to deal with all sorts of issues. It is the fabric of life.
This April 2nd celebrate with me because it is International Autism Awareness day. Find out more… donate… educate… support and love those special people that have ASD.
Margarita Ibbott is a Blogger, Professional Organizer, Speaker, Social Media trainer, wife and greatest advocate to her three children. She brings order to people, places and things & then blogs about it. She has a son that was diagnosis with PDDNOS when he was 9 and understands the challenges of have a child on the ASD spectrum.
You can find her musing on her blog DownshiftingPRO – Your Family, Your Home, Your Life. You can also find her most Wed. nights at 8 pm ET on Twitter co-hosting #LinkedMoms Chat (a resource for bloggers and brands). Connect with her on:Twitter, Facebook, Instagram, Pinterest, LinkedIn & Blogging