Spectrum Warriors: Life Through The Autism Spectrum

What I Wish Someone Had Told Me When Autism Came Into Our Lives

October is autism awareness month in Canada, and my awareness post is not about the numbers or the need for more services – both of which are very important – it’s what I wish someone made me aware of when we first got our diagnosis.

What they don’t tell you – the bad

  • You will lose friends, not everyone will understand why you can’t just ‘attend’ parties and outings at the last minute
  • You will get looks when you are out in public and your child stims, yells or has a meltdown. People who don’t know you will judge you as a bad parent because they don’t understand and don’t live in your house
  • Not everyone will accept the diagnosis, this could be friends, family, strangers or even other health professionals involved in your child’s care
  • You will need to be your child’s strongest advocate and voice, especially if they don’t have one
  • You will need to learn ninja skills to fight for resources and become a detective uncovering what kinds of services might be available and how to get them and a super sleuth to figure out what the caused the latest meltdown du jour
  • Some days you will cry and feel utterly defeated and alone

What they don’t tell you – the good

  • You will gain new friends, a community of people who understand and are able to offer advice, support and carefully scheduled play dates that avoid sensory overloads
  • You will become an educator and advocate without even knowing it
  • You will take joy in what other parents sometimes take for granted – the milestones of being able to go out in public with your child – fully clothed!
  • You will learn ninja parenting skills that make you feel like a super hero when you get your child to try something new
  • You will become a super sleuth and learn how your child’s brain works which very likely be extremely different than your own, it will teach you a whole new perspective
  • You will cry some days out of sheer happiness because your child did something you never thought possible, or that a year ago would never have been possible
  • You will learn that your child can amaze you in ways you never imagined

Autism – regardless of where your child falls on the vast spectrum will change your life dramatically. Some of it will be bad, some of it may be for the better, although often it will be hard to think like that, especially if you have a child who is non verbal and/or self-injurious. You as a parent need to accept not just the diagnosis, but that everything you thought you knew about parenting pretty much goes out the window and you’ve entered a whole new ball game filled with acronyms, therapy and a whole different set of goals.

I heard this song performed live last night a local autism awareness event with Comedian Michael McCreary – Does this Make my Aspergers’ Look Big and I thought it was fitting to share during autism awareness month.

The song was performed by Cathy Hutch and is called I’m in Here. It brought tears to me eyes so I wanted to share it.

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