Raising my son to be an autistic self-advocate

The Boy

Raising my son to be an autistic self-advocate

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Raising my son to be an autistic self-advocate

Early in life, Doug Waddell could read. He had a fifth-grade reading level in kindergarten.

But he was a quiet kid who had difficulty demonstrating just how smart he was, and his mother was confused about his low reading comprehension scores.

Doug Waddell

Doug Waddell

Then came middle school, where he was bullied. High school? Many people thought he was weird and crazy, and his overall performance started to fall apart.

“So many things I wish someone had told me back in the day,” he wrote in an email conversation we had. “That masking neurotypical is an exhausting, exhausting, perhaps even soul-crushing, experience.”

A cloud had been lifted

The most important thing nobody was able to tell Doug was that he was autistic.

It’s something he wouldn’t know for most of his life. When he found out, it was as if a cloud had been lifted.

Knowing why he was “different” was a revelation, and it was empowering.

But it came after bouts of depression, an overwhelming stop at the University of Tennessee, and overall embarrassment of perceived failures with no tangible way to explain it all.

“I had no idea why I went to the same restaurant every day and ordered the same thing every day,” Doug wrote. “I had no idea why surprise eye contact cut me to the core.”

April is Autism Acceptance Month

Doug Waddell

Doug Waddell

His story of strength and perseverance has a happy ending that is still in progress.

Part of the reason was the autism diagnosis that came in 2016, when he was 36.

He communicated with me as part of Autism Awareness Month, commonly relabeled Autism Acceptance Month by autistic people.

Doug’s diagnosis came just after he dropped out of law school and after he had earned a master’s degree from Wake Forest University. It came after abusive relationships and suicidal thoughts. It came after years of unexplained social awkwardness and a misdiagnosis of bipolar type 2.

Doug is my son, in 30 years

But finally, it came.

“My mom said my entire life became clearer in her eyes and everything suddenly clicked when she heard that diagnosis,” he wrote.

This is where his story of self-realization and our conversation about it all will serve as a parenting tool as we raise our autistic son to be empowered, strong, and willing to advocate for his rights.

You see, Doug is my son, with one life-changing difference.

My son will know why he’s “different.” He’ll know that he needs to ask for accommodations, and that those kinds of requests don’t make him less.

And I can promise anybody reading this that our son will know his entire life why he flaps his arms when he gets excited, feels the need to chew on his stim necklaces to cope with sensory issues, and is infatuated with sliding doors at the library.

He’ll know all of that, in part, because of people like Doug, who are advocating right now for autistic people to be accepted.

Working on his strengths

So, how? How do we raise The Boy to join the fight and to love who he is?

That all begins with talking to our son about being autistic and what that means for him.

“Encourage him to develop his strengths, particularly his special interests,” Doug wrote. “As he gets older, encourage him to seek out Internet communities inhabited by other autistic people. We have trouble with spontaneous conversation, but man, give us a keyboard and computer, and we turn into Chatty Cathies.”

So far, it means that he started reading when he was 2. He knew the alphabet forward and backward before starting preschool. He follows along with learning apps meant for children several years older.

Still, his speech is delayed. He can’t have a conversation, but can fully express what he wants and what he needs.

The Boy

The Boy

Essentially, our son is incredibly smart but is still working on being able to demonstrate all that he knows. Sound familiar?

‘Adopt a philosophy of pride’

His first four years of life mirror those of Doug. Our job now: Learn from what autistic people like Doug are trying to tell us about how to parent our son.

Their experience is varied and saturated with lessons for parents, autistic people, and really anybody trying to embrace the idea of acceptance.

“Adopt a philosophy of pride,” Doug writes as advice to my son. “That helps. Now that I know what my hand flapping is? My rocking? My slightly slapping the back of my head? Biting my fingernails and skin around my fingers? I take pride in stimming, and damn anyone who is annoyed by it.”

Doug expects to move back to his home state of Tennessee and get back into teaching. This past year has been a roller coaster ride that has him currently finding peace with who he is and what he needs.

He’s on social media advocating for himself and other autistic people. He’s talking to family and friends about how the diagnosis completes the picture of his past.

He’s living the life I want desperately for my son. One of love. One of acceptance. One of peace and one with a promise of fulfillment.

Doug is my son, 30 years from now … if we do our jobs as parents.

“Just know that we’re out here, building a community, and we’re doing our best to look after our own,” he wrote.

Thank you.

Note: I asked an autistic friend of mine to do a video talking about self-advocacy. He posts on YouTube regularly about living on the spectrum.

Louie Villalobos is a parenting blogger and digital producer for azcentral and allthemoms.com. You can follow him on Twitter @louievillalobos and find his podcast on iTunes, Stitcher and Google Play. Just search for “I am your father.”

 

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