5 things caregivers of autistic people never want to hear
Marie Sauret sees the sneers and hears the complaints said just loudly enoughto catch her attention.
“Why is that child so loud? Why are they letting him do that? Why doesn’t he just walk?”
They’re in response to her son, Matteo, who sometimes manipulates his voice into siren-like wails or prefers to lie onthe ground, even in public.
At age 9, he uses a pediatric stroller and an electronic communication device, which signal his own set of abilities.
But before he reached age 7, those devices weren’t yet a part of his life. To many, he appeared typical, which created fertile ground for some of the most common, and unwelcome, comments to his parents.
Here are five things Sauret and other parents of autistic people often hear, why they’d rather not hear them, and how they’re scientifically faulty.
1. “He doesn’t look autistic.”
For those in-the-know about autistic traits, his differences were noticeable, even at a young age: lack of eye contact, far fewer words than expected and a tendency for tantrums. But when Sauret would share his diagnosis, the “spectrum” part of “autism spectrum disorder” is often lost.
“Many people think of lower-functioning, handflapping, rocking back-andforth-type of autism. Someone like Dustin Hoffman’s character in ‘Rain Man,’ ” said Gary Swanson, an Allegheny Health Network child and adolescent psychiatrist with expertise in autism. “While stereotypical behaviors are part of the diagnostic criteria, not every person with autism has all of the criteria.”
Before the current iteration of the Diagnostic and Statistical Manual of Mental Disorders, published in 2013, the so-called “higher-functioning” group of autistic people (or people with autism, depending on preference) often received their own diagnosis called Asperger’s Syndrome.
Now, “autism spectrum disorder” encompasses every autistic person, in part, because what may appear “higher-functioning” from an onlooker’s perspective, reveals nothing about how intensely the individual experiences their autistic tendencies internally.
“There isn’t a particular way that an autistic person looks. There’s no particular appearance that they have,” Swanson said. “So, I don’t even know what someone means when they say, ‘He doesn’t look autistic.’ ”
2. “I’m sorry.”
Sauret openly shares Matteo’s diagnosis. For others, the diagnosis is shared with only a trusted few.
In either case, a common response is “I’m sorry” — a comment that frequently yields a bevy of fiery responses, bottled up by caretakers in favor of a forced, polite smile.
If they were said aloud, however, the sorrowful person might hear something like this: “It’s not a death sentence. It just means that his brain works differently,” Sauret said. “It’s not somethingwe need to be sad about. It’s something we need to have knowledge about and advocatefor and support.” It’s also not rare. According to the Centers for Disease Control and Prevention, autism is diagnosed in one out of every 36 children, and many of them are thriving.
“Sorry? For what?,” said Meagan Brown, a board-certified behavior analyst and applied behavior analysis professional development coordinator for The Children’s Institute of Pittsburgh. “How dare you. My child, my nephew, my friend — whomever it is — is contributing to this community just like you are.”
Albert Einstein, Leonardo da Vinci, Dan Aykroyd, Sir Anthony Hopkins, Temple Grandin, Elon Musk and Greta Thunberg are all autistic, or presumed to be.
“There’s a lot of positivity in these children with autism,” Sauret said. “They’re creative. They persevere. They work hard. There’s nothing to be sorry about.”
3. “They just need some discipline.”
Here’s the scenario: A person is having a meltdown — “throwing a tantrum,” some might say — in a public place, such as a playground or a grocery store.
To the general public, that person is “too old” to exhibit such behavior, which is why their eyes search for the parent and settle on them, laser beam-style.
The most outspoken among them might chime in with “Maybe they just need some discipline.”
“If discipline would work, I’d recommend it, but it typically doesn’t work in those circumstances,” Swanson said. “Psychiatry has a history, 70 years ago, for blaming parents for the development of autism. I’d like to think that we’re over that, but that doesn’t mean we as a society don’t still hold parents accountable for all kinds of things, including the behaviors of their kids.”
This comment also raises flags for Brown, who questions the meaning of “discipline.”
“When I hear something about discipline in that context, I hear that as physical discipline, and intervening with physical discipline or verbal reprimands is definitely not what needs to happen,” she said. “As a behaviorist, I’m worried about the function of the behavior, and I don’t use discipline to teach someone how to ‘behave correctly.’ That’s completely unethical.”
The “function” of that behavior largely depends on the individual and the situation. But a frequent cause of meltdowns for people with autism is sensory overload.
One study showed that individuals with Asperger’s syndrome — as this research was conducted just ahead of the DSM-V — produce 42% more information at rest, on average, than those without Asperger’s syndrome.
“At that moment, Matteo is over-processing. He just has too many tabs open, and can’t process one more thing,” Sauret said. “What’s going to help is being kind, patient and understanding.”
4. “Everyone does that.”
There is no blood test for autism. When studying the brains of autistic people, some research has noted characteristic shapes, but those tests are academic, not the standard of care.
As a result, neuropsychiatric testing is the method for identifying an autistic person, performed over hours with both the patient and the caregiver, if applicable, in addition to pages upon pages of questionnaires.
So, when someone asks, “How did you know they might be autistic?” the answer likely highlights just a few of the behaviors since the full breadth response would take a socially unacceptable amount of time.
By noting select characteristics, however, some listeners are compelled to say, “Oh, everyone does that.”
“Everyone may do that — at times — but typically, with someone with autism, they’re doing it way more often, and it’s interfering with their functioning and their social interactions,” Swanson said, referring to behaviors such as hand-flapping, rocking or scripted speech.
For Brown, simply observing a behavior or two isn’t enoughto draw conclusions.
“You’re only seeing one thing in one moment. I would never assume I know everything about a kid by watching them in one instance,” she said. “That’s not how science works.”
5. It’s not what you say, but how you say it.
When someone alters the tone of their voice to a higher pitch, slows down their speech or speaks louder to an autistic person, they — or their families — don’t often feel good about it.
“I think people assume people with autism are of lower intelligence, so they need to speak a certain way for Matteo to understand them,” Sauret said. “He’s not deaf. He just chooses not to listen to you because maybe he’s overwhelmed, or maybe hedoesn’t know you.”
Learning differences are a hallmark of autism. Lower intelligence is not.
Studies have shown that 29% to 42% of children with ASD have average or higher IQ.
Kelly Cain, founder of the Autism Caring Center in Canonsburg, finds another troubling method of communication with her son, Clayton, an adult with autism.
“People are very surfacelevelwith him,” she said. “It’s just a hi, or how are you? They don’t ask about his interests, or his hobbies, or what he’s doing this summer. They figure he’s just getting by,and to me, that’s sad.”
When given the opportunity, however, Sauret offers advice to those speaking to her son.
Like many with autism, Matteo’s auditory processingtime happens differently, and as a nonverbal autistic person, he uses a device to respond.
As a result, Sauret recommends asking him one question at a time, and waiting 20 seconds before they could begin to expect a reply.
“Most of the time, Matteo won’t respond to you because you aren’t giving him enough time to process the question and get his ‘talker’ out,” she said.
“I think it’s most helpful when people just ask, “What can I do to be better understood?’ ”