Listening to Autistic Voices

By Jenny Palmiotto

Have you ever received a bad prognosis about your child’s future?  Have you ever been told that you shouldn’t have hope?

Dr Steven Shore at 4 years old – “Diagnosed with atypical development and strong autistic tendencies and “too sick” for outpatient treatment, Dr. Shore was recommended for institutionalization.”

Anthony Ianni – “Doctors and specialists told Anthony’s parents that he would barely graduate from high school, would never graduate from college, would never have a shot at being an athlete and would likely live in a group institution with other autistic kids for his adult life.”

Alex Plank – Discovered he had autism by “rifling through his parents’ drawers. ‘I had always been told I was special and awesome,’ Plank says, ‘then I got this label that made me feel like a loser.’ ” (except from new book Neurtribes by Steve Silberman)

Each speaker’s story is unique.  Each start in life a little different. Yet, too often the diagnosis of autism is given to parents and the future starts to look very uncertain, even bleak. Thank goodness the parents of Dr. Shore, Anthony Ianni and Alex Plank didn’t listen to the “expert” advice.

For those of you parenting a child who is 3, 5, or 7 years old with autism may be wondering what you can learn at our Love & Autism conference?

If you are like the parents I encounter and work with, you are probably busy gobbling up thousands of hours of information since you first received your child’s diagnosis.  Many parents are hungry for information on the best ways to support their child.

Yet, in all of your research and self-education, what have you learned lately from someone with autism?

If your response is “not much,” don’t feel bad. You’re not alone in this.  This is why the Autism Self Advocacy Network recently put out a strong call to action for people to listen to the voices of autistic individuals too.

Now, take a moment to reflect on your childhood dream.  How many of us wanted to be an astronaut? Basketball player? Baker?  Chances are you informed your parents of said dream and then proceeded to engage any and all activities to reach your goal.  Long visits to planetarium, maybe an outdoor basketball hoop, or your very own Easy Bake Oven.

Today, if your child were to tell you that they wanted to be a musician, you’d have them take lessons or apprentice under a musician.  If your child wanted to perfect their golf swing, you’d take them to a driving range and get them a golf lesson.  And if your child said they wanted to be a train engineer, something tells me a family vacation might involve a trip on a train.

But what happens when your child wants to know about what it means to be autistic? Or maybe you as a parent are yearning for a deeper understanding of what it means for your child to have this diagnosis?

So here is a quick list of what parents can get from listening to autistic voices:

  • A way to understand your child more.  Many of our speakers are transparent about behavior that is perceived as ‘odd’ or ‘different’.  It is interesting and insightful to hear them reflect on this behavior and to articulate the “why” behind it.  Be sure to ask David Finch about the feeling of rubbing his head on the carpet as a child! Or David Hamrick about his childhood love of spinning in a circle!
  • Discover strategies that worked for others on their path to love themselves, their lives, their diagnosis, and others.  A universal message, but so important for individuals growing up with autism to learn to love this part of themselves. (Ask Alex how he turned something perceived as a negative label into a positive self-identity)
  • Meet powerful role models for both you and your child.  There are plenty of role-models to choose from (Alex Plank, Anthony Ianni, Lindsey Nebeker, David Hamrick, David Finch, Stephen Shore, Anita Lesko, Abraham Neilson, Michael Tolleson, Jeremy Sicile-Kira, Kat Highet, and more!)

Yet some of you may still be thinking that now isn’t the right time.  You might be thinking to yourself, “My child is 8 years old, I’m not thinking about their romantic relationships or sex.”

True, right now, you may not be thinking about your child’s dating life.  You are probably busy with current appointments or how to navigate your next IEP meeting.

However, you wouldn’t start playing basketball during your senior year of high school if your goal was to play college ball.  And you don’t study the night before the test if your goal is to get an ‘A’.  You plan in advance and take little steps long before you get close to your goal.  The same is true for raising a child who you want to have heathy and fulfilling adult relationships.  Start to plan for their future, today.  (Yes, I stole that line from an investment company…but it works and it’s true).

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