Louie Villalobos

The Republic | azcentral.com

I have no idea what it's like to be autistic. That's something I need to remind myself as I write this blog post.

I'm not a spokesperson for the autistic community. Organizations that present themselves as allies shouldn't solely rely on my feedback as they go about setting agendas and priorities for how to help autistic people.

I am not autistic. My beautiful son is.

But even his autism doesn't make me better qualified to speak about the spectrum that is made up of countless people who are actually autistic. That's what this post and this podcast are about. Their voices.

Magnus Hedemark, 43, is an autistic father of an autistic child. He works and lives in North Carolina where he often tweets about autistic topics and works as a social-media activist for the community.

I reached out on Twitter to ask for his perspective on being autistic and what he would want the rest of us to know. What I got back was a wonderful window into autism as it impacts his life and family.

Autistic brains are wired differently, he wrote. That allows autistic people to experience things differently from the rest of us. That can mean a richer experience.

“My autism is a difference in how my brain processes my senses, and it's a difference in how I solve problems,” he wrote. “When I work in an environment made for me, I do wonderful things. But environments that overload my senses can have a disabling effect.”

Social media is filled with autistic people seeking inclusion and acceptance while the rest of the world discusses and works on their behalf.

The hashtag #actuallyautistic is how I came across Hedemark and several self-activists. Look it up to see it bubbling with activity this month, labeled Autism Awareness Month despite the fact that many in the autistic community prefer Autism Acceptance Month.

One of those who you'll see through that hashtag is a YouTuber who calls himself Ultimate Oddball, an autistic man who posts videos on the topic. I asked him to do a video for azcentral about what autism means to him. This is that video.

That word "acceptance" is a particularly strong one. It’s something Hedemark wrote about to azcentral in terms of how autistics can be perceived.

“We might move differently than you, make sounds differently than you, or maybe speak very little or not at all. But what's going on inside may be very different than what you think you see from the outside,” he wrote. “We're not in our own world; we're in your world, but experiencing it all from different perspectives.”

That last bit about autistic people not being in their own world really sticks with me. My son is still very young. He’s showing a great deal of development in his speech and communication skills but is still having some challenges.

We’ve learned that his behavior is communication. He’s so amazing and smart that he’s able to get his point or request across but it's a work in progress. Hedemark’s comment reinforces our commitment to keep looking for our son’s perspective.

I took the opportunity to ask Hedemark about raising the Kraken. What can I learn from him and other autistic adults who society seems to forget were at one point autistic children?

“What we want the most for you is to help you to connect with and deeply empathize with your child and help them to thrive in a world that won't always understand or accept who they are,” he wrote.

Ashlynn Zuiderveen, 26, lives in Surprise as a newly diagnosed autistic adult. She mentioned "stimming" several times via email.

She has found that stimming, often expressed through repetitive moments such as flapping her hands, helps her better function in her surroundings that can sometimes be too much to handle. Zuiderveen said stimming and echolalia -- repetition of noises or phrases -- play a significant part in her autism. What she didn't know entirely was how much of a role it plays in my son's autism.

He happy flaps with the best of them when we go feed the ducks. He repeats words or phrases, often immediately after he hears them.

More specifically, the Kraken will use our words to help organize his day, despite not really being conversational with his speech. He’ll say “let’s go” when we’re in the car or “all done” when we’re back home. He picked up both those phrases from us.

Zuiderveen's email is a sort of telescope into my son's behavior.

Where her comments really struck an emotional chord with me was when I asked what she wants parents to know about raising a child on the spectrum. Tantrums are a thing for all children. My son's carry a little extra weight since they can warn that something real is bothering him.

That doesn’t make those moments less challenging for us, though. Zuiderveen reminds parents to pay attention.

"We don't aim to give parents a hard time, we are having a hard time,” she wrote. “Meltdowns are not temper tantrums. They're neurological overload."

The idea of being overwhelmed at times is one that I spoke with Gabe Nelms, 13, about while he was spending time with the animals at The Therapy Farm in Gilbert.

The 13-year-old Mesa boy, diagnosed with autism as a toddler, said his focus is working through anger issues. You can hear him talk about that a little in this video.

Gabe talked about some of the things he's already figured out do help him through those moments. A snake, he said, is a great example because of the skin and the movement. That kind of sensory help is vital for him. The same goes with the family dog or the horse he spent time with while at the Therapy Farm.

"To me, feeling that is very relaxing," he said while playing with Watson, a therapy dog in training. "It makes me feel better that they're alive and have a personality."

Still, there are times when that sensation isn't at his disposal and he has to work through his anger. The very self-aware boy notices the reactions he sometimes gets from people who might not know he's autistic or trying his best to regroup.

"That's what I think. That they think I'm a foolish person when I get angry," said Gabe, who loves Minecraft because it caters to his creative side.

I spent almost two weeks meeting people like Gabe. This teenager and the autistic adults I communicated with really are an example of who we should be talking to when it comes to writing about the autistic community. I combed through my notes and emails from the interviews to find one last quote that really sums up the point of this blog post. It's a trick journalists use to end the article in a somewhat poetic fashion.

I kept coming back to Zuiderveen's email and these words typed in her long note filled with moments of advocacy for autistic people.

"I want folks to know that we autistic people, by virtue of lived experiences, are the best experts on what autism is and what it isn't," she wrote. "So if you wanna better understand your autistic child, make friends with some autistic adults. We were kids once."