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 ASD is almost five times more common among boys (1 in 42) than among girls (1 in 189), according to the Centers for Disease Control and Prevention
ASD is almost five times more common among boys (1 in 42) than among girls (1 in 189), according to the Centers for Disease Control and Prevention
Jill Hamilton. Modern Parents columnist for OC Family.

“What should you say to a parent when they tell you their kid is on the spectrum?” my friend asked the other day. My answer was, “Uh …” Which was not only lame, but also kind of ridiculous because I have family members on the spectrum and a shockingly high number of friends with children who have been diagnosed with autism spectrum disorder – or ASD, which is the current term for an array of symptoms including repetitive behavior, restricted interests and difficulty in social situations and communication.

The rate of diagnoses has skyrocketed – from 1 in 2,000 in the 1990s to 1 in 68 in 2010, according to the U.S. Centers for Disease Control and Prevention. If you don’t have a kid or relative with ASD, you probably know someone – probably a lot of someones – who do. Don’t believe me? Check your Facebook feed on the next Autism Awareness Day (It’s April 2).

So what do we say when someone tells us their child is on the spectrum? What would parents like us to know about ASD? How can we best support them and their cool, interesting kids?

Don’t say, “Ohhh, I’m sorry”

“‘I’m sorry’ tops the list of D-bag responses,” said Courtney Pooler of Long Beach, mother of Parker, 15. “We don’t need to be sorry – it’s a gift. A tough, challenging, but beautiful, new lens in which to view life.”

So no “I’m sorry,” then … what?

Jill M. Pernicano of Ann Arbor, Mich., mother of Reed, 9, suggested saying something helpful along these lines: “What can I do to help him feel at ease while he’s here?” “If he has any sensory issues, I’d be happy to dim the lights/turn down the music,” or “Do you need a quiet place to retreat to in case he gets overwhelmed?”

Don’t force or expect eye contact

“Eye contact can be painfully intense for autistic people. He can’t listen to you if he’s marshaling all of his resources to maintain eye contact. He will have a much easier time processing your words if he is not required to look at you,” Pernicano said.

Do go out of your way to engage

“You have to step into their world because they’re rarely going to step out into ours,” said Rebecca Goddard of Mission Viejo, who has two children with ASD, Franklin, 8, and Jackson, 6. “You have to draw them out. Bend down and touch their hands with a smile and warmth so they know you’re a safe person. Calling their name is not going to get their attention. You have to get right in their grill.”

Don’t get up in their grill

Jo Ashline of Orange, mother of Andrew, 13, added: “ASD is a diagnosis that covers an extremely wide and diverse range of abilities and challenges and that means everyone on the spectrum is unique. What works for one child may not work for another. The approach should be about getting to know everyone at his or her level.”

Don’t change the plan

A change in plans, even something as seemingly benign as a spontaneous trip to get ice cream, can be super upsetting for a kid with ASD. Heather Shelley of Goshen, Ind., mother of Holden, 17, said: “It helps to prepare a child for what will happen later. I usually warn my kid a day or two in advance, and then again the next day and the day of. This is especially important if it’s something out of the routine like a doctor’s appointment.”

ASD kids can be really, REALLY sensitive to stimuli

Lights, noises, clothing tags or other things that are scarcely noticeable to the rest of us can bother kids with ASD. They’re not being bratty or picky, but they are completely overwhelmed. “You know the second hand of those big classroom clocks?” Pooler asked. “Parker says that little tick that we all tune out is like someone sitting at her desk and taking a sledgehammer to her desk every second.”

ASD kids might not act in a way you expect

“Kids with ASD might not seem friendly. They might give one-word or awkward answers, or not respond when they’re spoken to. Holden looks absolutely normal, so people think he’s just being rude or a jerk,” Shelley said.

Kid freaking out in public does not equal bad parenting

No glaring, please. “She is having a meltdown, not a temper tantrum. Give me one more nasty side-eye while she’s losing it and I will punch you in the throat,” said Kyra Kramer of Bloomington, Ind., mother of Alana,10.

Don’t get wigged out by “stimming”

“The movements he makes (such as flapping arms or hitting wrists together) are a form of self-care called stimming. Autistic people use stimming to self-regulate in stressful situations. Stims do not hurt anyone, and they help the person who is doing it,” Pernicano said.

Explain, explain, explain

“My child only gets things through verbal instruction,” Shelley said. “He doesn’t pick things up through observation or non-verbal methods,”

Don’t assume that a child with few or no words doesn’t understand

“He may not speak, but he hears and understands everything,” said Michelle Del Rosario of Orange, mother of William, 15. “Presume competence; you’d be surprised what he’s interested in learning about.”

Be patient

“I know you want to help but let him try it by himself; sometimes it just takes him a little bit longer to process words and type his thoughts,” suggested Del Rosario, whose son communicates via an app on his iPad.

Teens may be physically affectionate with their parents even though they seem “too old.”

“Holden still wants to hold my hand even though he’s 17,” Shelley said. “Most kids his age don’t even want to be around their parents, but he has no other social contact besides us.”

Brenda Seeberg of Birmingham, Mich., mother of Erin, 18, noted: “Erin head-butts me, kisses me and touches my hair in public. It was easier when she was little, but she is turning 18 next month, and then it can look creepy. I have developed a very thick skin.”

ASD kids think literally

“If you say, ‘Cat got your tongue?’ Reed will be picturing a cat chomping down on his dismembered, bloody tongue. He might be upset at this horror he believes you are wishing upon him,” Pernicano said.

Listen to the content of the child’s words rather than the tone or volume

“If he screams, ‘PLEASE!!’ or ‘THANK YOU!!’ he’s actually trying to be polite, but is having trouble modulating his voice,” Pernicano said.

It’s OK to give feedback on social cues

“I don’t like her to be treated with kid gloves,” Pooler said. “On the playground in middle school, Parker would walk right up to all the cool girls and start talking about ‘Backyardigans’ when everyone else was talking about Justin Bieber. It was, like, so painful. But that’s what she needs help with. These are rich moments for us to be able to teach her in the moment.”

Kids on the spectrum may perceive the world in ways you can’t imagine

Pernicano’s son has prosopagnosia, or face blindness, meaning he doesn’t recognize her by her face. She asked him how he recognized her in the hallway after school when she’s standing with the other moms. “He mentioned my long brown braid, my glasses, my voice, then pointed to my bra strap showing and said, ‘None of the other parents have that,’” Pernicano said.

Things might get awkward

My nephew went through a phase where he’d go up to older women and ask them if they had a husband and if so, if the husband was dead yet. This generally didn’t go over well. “Kids on the spectrum have no filter, so be prepared for the child to say anything,” said Pooler. “It’s probably going to be as awkward as possible,” she said. “Just keep collecting it as material for your stand-up routine.”

ASD kids are different – and that’s good

Susan Hammond of Huntington Beach, mother of Audrey, 12, said, “Every kid is different – embrace that. It teaches us compassion. Audrey asks a million questions and it can be exhausting, but I remind myself that that’s what makes her so brilliant. The world needs people who think differently.”

And remember, no “Ohhhh, I’m sorry”

“Use it as a springboard for conversation,” Pooler suggested. “Ask questions: ‘What are your biggest challenges with her?’ ‘What are the biggest gifts?’ Watch the child and be genuinely intrigued by what makes this kid tick.”