As the father of a very young child—and having done it once before—I am pretty familiar with that sobering feeling of parental responsibility that arrives along with a new family member. To put it mildly: It can feel a little overwhelming.
I can only imagine how overwhelming parenting would be if my child faced a developmental disorder like autism. In addition to the usual demands of providing a stable, loving home, and considerations around school, friends, and activities, I’d also have an untold number of social, emotional, behavioral, medical, dietary, and logistical challenges to juggle. It’s hard to fathom. But with roughly one in 68 American children born autistic, this is their parents’ life’s work.
I recently got to meet with some of these inspiring people at an event hosted by Autism Hope Alliance (AHA), an educational and advocacy nonprofit for families facing the diagnosis of autism, and a partner organization of Nordic Naturals. After my visit with AHA, I realized how little I knew about autism. To gain a better understanding of the disorder, I contacted a friend from college who has made a career working with autistic children and their families. Michele Fouts is a Licensed Psychologist, and Autism and Developmental Consultant in New Haven, Vermont. Here’s what she had to say.
I asked Michele about common misperceptions, assuming most people (including yours truly) are pretty ignorant about autism. In her view, one of the biggest misperceptions is that people with autism are happy in their own worlds, and don’t want to connect with others. She hears this a lot but says it’s not the case. “People with autism generally do want to feel connected, but the way they go about it can be confusing for themselves and others.”
“How so?” I asked. As Michele describes it, people with autism don’t understand patterns of social cues the way that most of us do: “Even though we’re on the phone, and we can’t see each other, I know if you understand me, and you know if I understand you, because we notice and respond to voice intonation.” Autism seems to limit this sort of social nuance, so communication becomes much more literal to the autistic person, while their communication appears very awkward to others.
Sadly, the gap between an autistic person’s desire to relate socially, and their ability to do so, is made apparent by high levels of anxiety and depression that can appear during counseling. Yet even for parents of autistic children, it can be hard to believe that their child truly wants to bond. Young autistic children rarely make sustained eye contact, preferring instead to gaze at inanimate objects. Or, they may cry when picked up and become calm when put down, the exact opposite of what parents expect to happen.
“I have never met a child who wasn’t capable of connecting with [his or her] parents.”
—Michele Fouts, M.A., Autism & Developmental Consultant
Despite how autistic behaviors may manifest, most people with autism do connect socially, and can learn social behaviors that align with norms. This is why intervention programs should focus not only on functional “life skills” (self-care, etc.) but also on social and emotional development. “I have never met a child who wasn’t capable of connecting with [his or her] parents,” Michele says. Unfortunately, intervention methods tend to favor functional behaviors over emotional development as autistic children grow up.
“How about a cure?” I asked. Evidently, this is a difficult and controversial question. Michele believes that people with autism will always have a different way of processing the world, but that the right treatment, in certain cases, can render presentations of autism nearly imperceptible. Interestingly, whether autism should be treated is debatable. Some members of the autistic community identify with their condition, and find the attempt to “normalize” their behaviors somewhat patronizing. “My goal is not to cure autism,” says Michele. “I aim to improve quality of life for the whole family.” From what I gather, this is a worthwhile and attainable goal.
The Role of Diet
As someone who works for a nutrition company, I was curious about the role of diet in addressing autism. Plus, some of the AHA folks had mentioned that diet was one of the very first (and most significant) modifications they made with their own autistic children.
The key with diet seems to be consistency, but the urgency to do something impels many parents to try a scattershot approach to nutritional changes with the hope that something will stick. The fact that autistic children may have very specific food preferences (e.g. only brown and crunchy, or white and creamy, etc.) can make introducing or eliminating any one ingredient for a period of time extremely difficult. Nevertheless, anecdotal evidence from families, and the clinical experience of health care professionals, suggest that some children do improve with consistent dietary changes.
How to Help
After my evening with AHA, I left wondering what those of us outside the autism community can do to help, so I put this question to Michele. Her answer surprised me. “Be more patient. Accept some difference,” she says, which seems easy enough. “Who cares if someone across the room rocks back and forth to de-stress?” She reminded me that all of us have our idiosyncratic ways of handling stress.
A little more patience and understanding on all our parts may help parents the most. Parents often struggle with guilt around their child’s condition, and worry that their parenting will be judged by people who don’t realize that the child’s behaviors are out of their control. Because of this, “parents can feel very isolated, and may tend to keep their child at home because it’s a more manageable environment,” Michele says.
For anyone who wants to take a proactive step to help support families with an autistic child, consider purchasing AHA’s Pamper Me Pantry, a gift box filled with some of the best natural products available. Proceeds from your purchase will help provide a family with supplemental nutrition like omega-3s, probiotics, vitamins, minerals, and more. And for a deeper dive into topics on autism, here’s a resource on autism and sleep, and be sure to sign up for AHA’s annual online Autism Hope Summit, with some of the country’s top health care and nutrition specialists.
There’s still a great deal we don’t know about autism, but strides are made all the time toward a better understanding and approach to the disorder. From my own perspective trying to better appreciate autism, there is one thing I can now say with certainty: There’s always reason for hope.
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