Voices from the Edge: Tale of a Haircut


Voices from the Edge: Tale of a Haircut

My youngest child got his haircut yesterday, and as I sat watching the very patient hairdresser continually checking with him and asking him if he was alright, I almost began to cry. Haircuts can be traumatic. But before you begin asking for photos of my bouncing baby boy, let me tell you that Allen is an adult on the autism spectrum, and getting him to even consider a haircut -- let alone allow someone to actually take scissors to his treasured locks -- was a process I began two weeks ago.

Accomplish your goals and find strength one step at a time, by taking the first step firstWith Allen, I have learned to take things one step at a time.

The Center for Disease Control (2012)  estimates that care for adults with autism cost the government between $175 and $196 billion a year. But this only amounts to 7% of the total allotted to researching autism and finding a potential cure. While statistics from Sweden suggest that ⅔’s of the budget could be cut with early identification and education, this is of very little help to those like my son who were not diagnosed until adulthood. Currently, the Office of Autism Research Coordination (OOARC, 2019) states that only 1% of the government funding goes towards researching and providing for the needs of adults with ASD. And that’s depressing news for the 2.7% of the adult population who live somewhere on the spectrum. 

Meanwhile, those of us who find ourselves parenting an adult with ASD are essentially flying without a net. We learn by doing, stepping back and forth in a dance with our offspring, figuring out what works and what doesn’t. Then figuring it out all over again when the tried and true method fails.

In Allen’s case, surprises are a no-no. Careful preparation is required for anything more than a change in dinner menu. If I need to address a new situation with Allen, I lay in wait like a mother lioness on the prowl, sniffing for clues that might allow me to broach a new topic.

Two weeks ago, as Allen stood at my dresser mirror lamenting his thinning hair and the sad fact that “all the men’s hair products lie,” I saw my chance. I stowed the clue away in my brain and waited for an opening, which came a few days later when he and I were running errands and he ran his hands through his hair, expressing dismay at the tangles which had taken over his head.

“You know,” I said, “Grandmom was a hairdresser. And she always said that hair would grow more when you cut it. Just something to consider.” 

He nodded but did not respond. A day later, he approached me and said, “I remember Grandmom cutting my hair. But maybe that was only true of lady hair.” 

My pulse quickened but, like the wise lioness, I kept my breathing steady. “Hmm, “ I said. “I guess we could find out. Would you be willing to talk to someone who cuts men’s hair?”

He sent me a suspicious look and I averted my gaze. After a moment, he said, “Sure.”

So I began an investigation to find someone who worked with people with special needs. I found Benny’s Hairstyling in Springfield, PA, and when I called and explained the situation, I was given an appointment for Friday with Sally.

Then I began to prepare Allen. We’re just talking. You don’t need to cut it unless you want to. We’ll go for lunch later. Yes, anywhere you want. I wisely lulled him into security.

As a complex developmental disability, Autism is a spectrum disorder because it can affect people differently. Allen’s hot buttons are mostly sensory -- heat, noise, bright lights -- but also extend to social delays and lack of recognition of nonverbal cues. When we arrived at Benny’s, I was pleasantly surprised to find that Sally works in an area separate from other stylists. When she  invited Allen into her chair, he backed up and looked at me. Sally, bless her, caught it. “We can just sit here and talk,” she said and indicated a set of chairs.

And they did. After a few moments, he was willing to sit in the barber chair. A few more, and he was willing for her to cut it “a little.” A few more and the tangles and knots were falling quickly onto the floor. And then -- wonders of wonders! -- he let her wash it.

According to three different reports summarized on OpenMind.com, in another ten years 2 out of every 100 adults will exist somewhere on the autism spectrum. And the $330,000 currently spent on providing research on adult needs just isn’t going to -- excuse the pun -- cut it. 

Zac Smith, writing for VOX, says this about his own adult diagnosis of autism: The autism spectrum is a broad and constantly redefined place, a frontier of the mind that's still mostly wilderness. The revised definitions of it in the DSM-5 just a few years ago are still controversial — it's both easier to diagnose aspects of the spectrum in people and more difficult to determine if a formal diagnosis is necessary, if it's even a "problem."

Trust me on this, it’s a problem, and one that is likely to worsen until we recognize that we need to explore the wilderness and remove that stigma that is often attached to “having autism.”

And we need more people like Sally at Benny’s Hairstyling, who treated Allen with both respect and kindness. And yes, Sally, I am reminding him to brush his hair everyday.

Now, because you asked so nicely, is a picture of my bouncing baby boy. All 6 ft 6 inches of him.

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