5 Truths I’d Tell My Past Self About Autism

Sophy&Son It’s been 10, 11 or 12 years since my son’s autism diagnosis, depending what you count as the start date (was it the day he was proclaimed “developmentally delayed,” “PDD-NOS” or “autistic”?). No matter the date, I’d still tell my past self these five truths:

1. Professionals will stop treating you like you’re crazy for thinking your son is autistic. Back when you started the journey, so-called experts like your first pediatrician didn’t heed your concerns or your PowerPoint-like presentations. But now, the understanding and recognition of autism has grown, so you don’t need to present the case for his autism at every doctor visit. Getting appropriate services still requires stamina, so it’s a good thing you developed your advocacy skills early on.

2. That resolution you made to have a good life with autism is one of the best things you’ll do for your son and yourself. You’ll even write about it in an NPR essay for “This I Believe.” It does give you a positive purpose, even on the hard days. It does help you appreciate the child and the life you have in the moment. It does make you grateful for the joy he brings you (spoiler alert: you will crack up with him at the emergency broadcast system).

3. Your quest to find the equivalent of a “What to Expect When You’re Expecting/What to Expect The First Year” for parenting a child with autism is a complete waste of time. Each person with autism develops in their own way, on their own path. But you will find something better: books, blogs and Facebook pages of people with autism who articulate their journeys and provide thoughtful parenting advice (especially those who become parents themselves), as do the parents of other children with autism. And your son will communicate more about his wants and, later, his thoughts. Ten years on, you will be an expert in his language.

4. While you will not be a paid full-time journalist, as perhaps you thought you’d be, you will use your journalism skills daily. You will not believe all the conflicting theories about the causes, treatments and approaches to autism you will encounter. Your ability to question, to research, to synthesize and to separate what’s valuable from pseudo-scientific manure will help ground you. As will your return to writing – on a limited basis about subjects that have nothing to do with autism (home design… who knew you’d like that?).

5. In 10, 11 or 12 years, when you look in mirror, you will be happy with the person you’ve become. You will like the person you’ve become not in spite of autism, but (in part) because of autism. There will be a time when you feel parenting a child with autism isolates you from the world at large. But then you’ll start to feel a connection with other people who struggle, other people who experience the world differently from “the norm,” other people who wake up each day grateful for, in your words, “the good life they make.”

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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