Temple is a world-renowned animal behavior scientist with a PhD and several game-changing inventions that can be found on farms throughout the world. But it’s her willingness to talk about her autism experience, along with frank advice, that captivates parents and educators alike.

Here again is another quote from Temple, speaking at the Chicago Humanities Festival in 2013, with some interesting advice for parents:

“If you want to teach a kid with autism things like UP and DOWN, you need to use seven or eight specific examples. Otherwise, they might think UP just meant UP THE STAIRS. No, the kite went UP in the air.  The cup was put UP on the shelf. I picked UP the paperclip. You’ve got to use a bunch of different specific examples. Everything is learned by specific examples, and specific examples are put into categories. That’s how my mind works!”

Parents who are listening to this for the first time today, and the general public, are captivated instantly by Temple’s conviction and certainty about what should be done to help autistic children thrive. It’s hard not to see her as an autism expert, to take her advice as truth. After all, she herself was diagnosed with autism.

But should autistic individuals like Temple speak on behalf of all autistics?

If Temple Grandin’s brain needs to be taught many different examples about one thing, does that mean your autistic child thinks that way, too?

On this week’s A.I.M., we look at the voices of children and adults with autism to understand and gain insight into their personal lived experiences.

And we explore the tension between prioritizing learning from autistic lived-experience and recognizing the broad diversity within it.

If we are all unique and different, then how relevant is Temple Grandin’s personal experience and advice for other autistic individuals?

Let’s learn directly from another autistic person:

“I get quite easily overwhelmed with bright lights and noises.”

That’s a quote from an autistic young adult from Ambitious About Autism, A UK-based special education provider.

Related Article: What Is M-CHAT| Modified Checklist for Autism in Toddlers

She describes what is commonly called sensory processing differences, specifically hyper-sensitivity to light and sound. Many parents raising an autistic child will recognize the same sensitivities in their child. And to help, they might provide them with sunglasses and noise-reducing headphones, for example.

But does this mean all autistic people get overwhelmed by lights and sounds? Should all teachers rush out to get noise-reducing headphones for every autistic student?

In one Instagram post, a parent with the handle @fortheloveofgabe shared a video including loud wedding music with the caption “Gabe is a non-speaking autistic teen who loves music, dancing, and partying. He got to attend his first wedding this year. He loved every minute of it!”

In another post, this same parent wrote, “He loves live music so much! We took him to see a concert two nights in a row after seeing how happy he was the first night!”

By the way, Gabe wasn’t wearing headphones in either of the short video clips of him in loud sound environments.

Insights from lived experience, like these, directly from autistic individuals and parents, provide a glimpse inside the autistic mind, their motivations, and behaviors. For parents of non-speaking children, parents who lie awake at night for years, wondering what their child feels and thinks and wants, these real-life glimpses can provide tips and clues.

Maybe that’s what I need to do for my autistic child! Take him to concerts!

But then, other views, …different lived-experiences conflict…

Years ago, for Autism Awareness Month, I organized an author panel at an Indigo bookstore in Toronto, Canada. In line with the goal of autism awareness campaigns to break down negative stereotypes, I promoted my book, Challenging the Myths of Autism, and invited two fellow authors, both parents of autistic children who had written books about their autism parenting journeys. One was Arthur Fleischmann, whose non-speaking autistic daughter Carly learned to type at the age of 10 and then went on to give interviews and lectures about her autistic experience.

Related Article: Parenting an Autistic Child with Confidence

Speaking through her digital-communication device, Carly once said:

“You don’t know what it feels like to be me. When you can’t sit still because your legs feel like they are on fire, or it feels like a hundred ants are crawling up your arm.”

How should another parent hearing this react? Is this what their non-speaking autistic child is feeling, too?

On the one hand, everyone agrees on the importance of giving voice to the autistic community.

For too long, research, government policy, and therapy programs have all been created by non-autistic neurotypical people. Autistic individuals must be listened to and included in shaping their lives and the supports that can help them thrive.

And that’s exactly what’s on the other hand: individuals. The autistic population is diverse. It’s a spectrum. A very, very broad spectrum.  So one person’s lived-experience may be very different from another’s. Parents share some common experiences, too, but also have their own unique journey.

Parents living with and raising a non-speaking, self-harming child with frequent meltdowns and aggression may not relate easily to advice from a high-functioning, fully speaking adult.

Years ago, I presented a seminar on autism at the Harvard Graduate School of Education alongside a colleague, Stephen Shore, whose book, Understanding Autism for Dummies, I had read and admired for his insights into life on the spectrum.  He’s a Professor at Adelphi University and is known for his smart saying about autism diversity:

“If you’ve met one individual with autism, you’ve met one individual with autism”.

Or, in the words of the young autistic adult from Ambitious About Autism in the U.K.

“You can’t mix us all into one label, ‘cause we are all so different”.

Related Article:  Autism and Picky Eating: Is Being a Picky Eater a Sign of Autism

This week, I invite you to A.I.M. your attention toward learning more deeply about the lived-experience of the autistic person in your life. Maybe start a conversation. Maybe observe more closely. And if your child is non-verbal, one way to learn more is to “join” by doing exactly what they are doing… like imitating, not mocking, with interest and respect. This is a research-based approach to building trust and learning more deeply about behaviors that are different from yours.

While we must continue to give voice and space to the autistic individuals to share their lived-experience and to explain their views, there is no clear answer as to whether we should follow the parenting and therapy advice they suggest. It’s unclear whether one autistic person’s experience and advice applies to all other people on the autism spectrum.

But one thing is for certain: we must continue to acknowledge and recognize the unique individuality in every human being.

I’ll leave you with some more insights from Temple Grandin’s opinions about autism:

“You know, people are always looking for magical turning points. There is no magical turning point. [...] You just keep learning more and more and more. There is no magic turning point.”

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