One in 68 U.S. children has an autism spectrum disorder. That’s a whole lot of parents feeling misunderstood and alone. Here’s what they want you to know.
Autism isn’t one size fits all.
Nicole Ramage says, “It’s important to know that it is a spectrum disorder. Just because one child is nonverbal and low functioning doesn’t mean they all are.” She adds, ” And every autistic child isn’t ‘Rainman’ either.”
Lindsay Crapo explains a common misconception is that people with ASD have a hard time with feeling and emotions. In her son’s case, it isn’t that he lacks the ability to feel, but that constantly feels every emotion at once. “The difficulty lies in separating them.
Daily life is challenging.
Kelley Bravener says routine is essential. Planning for a simple trip to the grocery store often takes longer than the actual errand. Crowds, unfamiliar people, transition, changes and new places are all triggers. Another part of day-to-day life is a near constant battle with insurance companies and school districts to get the services a child is entitled to. Keeping their child safe from wandering off or hurting themselves is a never ending worry. All of this is exhausting.
Their parenting choices are constantly judged.
Because their child’s special needs are invisible, many parents of autistic children feel judged when their child has a public meltdown or exhibits behavior others find unusual. Amanda Larson has had strangers comment on her allowing her daughter to play with electronic devices during dinner at a restaurant, however, it is a survival tactic so the rest of the family is able to enjoy the meal. The constant judgment gets tiring to even those parents with the thickest skin some times.
They are desperate for a place fit in.
Kathy Peterson is relieved to have finally found a place her family feels safe, loved and appreciated. They searched for a long time for a community where her autistic teenage son could be himself and feel included without being expected to act like all the other kids. They’ve never found that environment with a school setting, but they did find it at church. Jennie Skrobisz advises to listen when a child with ASD speaks “because it will likely be profound.”
They can love their child, but hate autism…or they may see it as a gift.
Michael Shelah says, “I love my son with all my heart and if you told me we could remove his autism and let him have a typical life but it would require violently ripping off my arm, I’d do it. I love my son and hate autism.”
Rachel Vogelsong has a different point of you view “I don’t need my child to be fixed or cured. It’s my job as his mom to help him find ways to make the world make sense for him. His unique perspective is a blessing”
So how can you help these parents? Start by bringing them a cup of coffee and a muffin, then asking what you can do.