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Kids With Autism Need More Than Our Awareness

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Usually around this time of the year I complain about the endless winter in Canada, and I also dress in blue and I join the conversation about autism awareness.

Since 2007, April 2 has been dedicated to talking about autism, to educating the public about the reasons why many of our kids flap around when they get excited; laugh for no reason, or don’t laugh at all; don’t make eye contact or don’t answer to their name when they are called; repeat constantly the same song or TV show; and throw huge tantrums at the supermarket or scream uncontrollably under particular conditions.

april autism awareness blue

Two years ago, I joined this conversation looking for answers to my current circumstances, and I started to navigate a colorful spectrum of information, from other people’s stories and concerns to possible causes and strategies to support the development of children with autism. At this point, I don’t focus anymore on the causes; I already passed the stage of “why” to deal now with the “what” and the “how.”

It has been quite a journey! Like a rollercoaster ride that never stops, that makes me dizzy but at the same time makes me wish for more and more, because maybe, in the next lap, we are going to make it!

Many times I’ve felt that my life can be divided in two. But I now realize that if this is true, and if there exists a point in my life that cut it in half, it could be when I started to live in the autism spectrum. I say “I started to live in” because, even though I am not the one who has autism, my life and the way I see the world had changed tremendously.

When the doctor confirmed the autism diagnosis for our son, Alejandro, I felt devastated. It was a very difficult time full of frustration and deep sadness. The confirmation of his diagnosis was something scary, and it made me feel really sad and hopeless. At that time, I thought autism was an incurable illness that was going to live with my son forever, and that was going to make his life (our life) very difficult.

More than two years later, things have changed a lot! Alejandro is still nonverbal, but he is learning to communicate in so many ways. He is looking at me and sometimes playing with me, and that encourages me every day.

I still feel anxious and overwhelmed, but I’m also stronger than I was two years ago, and autism doesn’t scare me anymore! I admit that I get mad at it sometimes, that some days are so difficult that I just want to leave and never come back, but other days are better.

When I can connect with Alejandro and I see his smile, I can easily understand that it is just a matter of coloring one day at a time: listening to my son’s own music and forgetting about conventional milestones; learning to be patient, or pushing when needed and celebrating his efforts and progress; promoting awareness with inclusion and, obviously, taking some mama time to enjoy a glass of wine on Friday nights to recharge.

As April starts, I’m complaining again about the endless winter in Canada (looks like spring isn’t coming this year), I’m wearing blue, and I’m joining the conversation about autism. But this time, I am not limiting it just to awareness.

Being aware is not enough; we need acceptance. Autism is not a choice for our kids, but we can choose to understand them and promote inclusion for all the people who live in the spectrum. Our children need love and appropriate resources; waiting lists for treatment are ridiculously long and private services are way too expensive for average families.

Our children need to be invited to birthday parties and play dates; they need to have friends. They have feelings and celebrate love and friendship, just like you and me. How are they going to improve their social skills, if they are not given the opportunity to socialize?

Our youth need to build confidence, and have access to opportunities to learn skills toward a successful job and a bright future. Our adults need fair salaries and ways to be heard. Autism’s parents need a friendly hand, not a judgmental stare or a comment like, “But he looks normal,” or “At least is not cancer.” (Believe me, it isn’t nice and doesn’t help at all.)

Sometimes I think that life presented to me this colorful spectrum to teach me that I need to slow down and really appreciate the music of people and the colors of the world around me… to be more humane.

Explore with us, and learn to see beyond the spectrum…

A longer version of this post originally appeared on One + One = Four.

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Originally published: April 2, 2015
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