April is National Autism Awareness Month, a time to bring awareness (and acceptance) to this ubiquitous but sadly little understood subject. Unfortunately, this lack of understanding from the general public can make life difficult for people with autism and those who love them. All parents want their children to be seen, understood, and valued for who they are, so I asked a moms to share one thing hey they want you to know about their kids with autism.
This is not an article about what it is like to be a child with autism. Only someone with autism can tell you what that is like and they can only speak for themselves. (Pro-tip: listen to them!) I point this out because, sadly, people with autism often face the problem of people speaking for them and over them, without listening to them, and despite the fact that many are not only perfectly capable of speaking for (and about) themselves but really want to be heard. I don't wish to perpetuate this harmful practice, even in the spirit of visibility and acceptance. That said, I consistently aim to talk about parenting in a way that is open, honest, and inclusive. I believe there is tremendous value in parents sharing their stories and hearing the stories of others. The unique experiences of parents of children with autism deserve a platform, and it's a pleasure to give it to them.
Obviously, everyone I talked to can only speak to their own experiences, but I was touched by how many shared many of the same joys, challenges, and passion in making the world a more understanding place for their children.
I'll let them speak for themselves.
"This is such an important piece of our life right now. I need people to know that he is funny, smart, creative, energetic, and loving. Being a child with autism doesn’t make him any less important or interesting that his neurotypical peers. As a mom, I want people to keep inviting us over, keep texting ridiculous things your kids say. Just because my kid happens to have autism doesn’t mean I just want to talk about that. It’s really an important part of our lives but not the only thing. I have three other children, our family is kick ass. Autism is just a small piece of our lives. "
"I’ll put in every child is different and just because a child is 'high functioning' it doesn’t mean they don’t have their own struggles. [I hate] statements like, 'He doesn’t look autistic,' 'But he’s so smart,' 'But he’s so verbal...' My recent 'favorite,' though, was [someone] who asked if my son attends 'regular school.' There is such a long list. And the looks when we try to attend events, and the lack of invites to parties and get-togethers.... really there is so much more..."
"I want people to know that [my child] is just like their kids. He wants to be invited to birthday parties and playdates. He wants to be involved. He wants to have friends. He just shows it differently. He’s so smart, and he knows more than an outsider looking in will give him credit for. These kids want to be involved in the community, too. Invite them over, eat lunch with them at school. Even if your kids are the ones doing all the talking. And moms, talk to us autism mamas. It takes a village to raise a neurotypical kid, it takes a country to raise a child with autism. We need the support of others in the community, too."
"I’d like people to know that my son can be social. He loves his friends and he loves going to school. He is so smart and literally remembers everything even [from] well before he was verbal. He also is a badass. I feel that he looks at the goals that his therapists set for him like, 'Don’t believe me? Just watch.' He loves his big brother so much and wants to play with him and his friends and wants people to give him a chance. He loves so hard. The worst things that I hear, 'He doesn’t look like he has autism,' or 'But he’ll look in my eyes!' And I wish others would shut up and stop before they speak. Autism looks different for every single person!"
"I'd like people to not just know but truly understand an autistic child having a meltdown or having a behavior is just that: a meltdown and/or behavior. The child is separate from such. He is not just being bad. They don't do what they do because they want attention; they can't regulate their body and what information their receiving. My son is amazing, smart, kind, and loving, but he also can have moments where he is punching and hitting and yelling and screaming... and when it's over it needs to be over. Don't judge. Be accepting and be kind because you may have no idea what a child or mom is dealing with!"
"I want people to know that my boy is not a source of pity! He is loved, wanted, and he brings so much to the table at home and at school. He is a source of joy to many. Telling someone 'I’m sorry' when you’ve explained that your kid has autism is blasphemy. Never say that. Autism is only a small part of a whole person and don’t underestimate what a child with autism is capable of. Their minds are complex and they will surprise the crap out of you at every turn."
"One thing I wish more people understood is that a 'spectrum disorder' means that each affected person will present with varying degrees of severity. My son does not present as 'classically autistic.' His symptoms are 'milder' but it doesn’t mean he doesn’t struggle to function in this world. When he’s stressed or overwhelmed he completely disengages and stops participating in the world around him. It doesn’t mean he doesn’t want friends. It means he needs time before he’s ready to rejoin us. Some adults don’t recognize this because he’s not a squeaky wheel child causing major outbursts and thus minimize his challenges as, 'Oh he’s going to be fine, I don’t know why you’re worried.'
I worry because I’ve seen him regress and I fear the more pressure put on him to perform will result in greater loss of skills over time. Other children do pick up on the subtle differences in the way he communicates. I have seen some of these kids make fun of my child but he doesn’t understand the nature of these statements. I wish more parents educated their children that while some children have differences it doesn’t make them less than in any way. My son has a giant heart. He loves owls more than anything (he’ll tell you the snowy owl is his favorite). He obsessively collects rocks and knows if one is missing. Because of the incredible amount of services we’ve been afforded to support him since he was 18 months old, he has made incredible progress socially and developmentally. We used to wonder if he would ever speak and now he’s starting to read. He is smart and he is a good person who needs a lot of hugs."
"I would want people to know that even though my son has behaviors that make him look angry and sometimes mean, he is actually a very sweet little boy. When he is overwhelmed he has these emotional outbursts, but when it is quiet and he is calm he just wants to play and love on people. Also, I want people to know that when my son is having these emotional outbursts in public, I am very aware of there stares, gasps, and shaking heads. It makes everything so much worse because I get anxious and I can’t calm my son down as effectively. Give me a smile, an understanding nod, or just walk by and ignore us."
"Just because she can’t talk, doesn’t mean she doesn’t understand. She’s very smart and takes it all in. Autism is a spectrum for a reason.. it varies greatly between individuals. Just because she’s very loving, doesn’t line things up, doesn’t stim — all the “classic” signs ASD is known for — doesn’t mean she isn’t on the spectrum. It doesn’t mean we’re lucky. She’s awesome and fierce, kind and smart. I love her more than I could have ever imagined. But, many days, the grief brings me to my knees."
"My son will be 6 this month and still can’t speak. He communicates in other ways. He uses his AAC [augmentative and alternative communication] device, some sign language, and picture exchange. The biggest struggle for me is that people think because he can’t speak, that he doesn’t understand what’s going on. He is receptive and on point. He probably soaks up a lot more than a [neuro]typical person because he’s not drowning others out by speaking himself. People need to presume competence, always. Treat him with the dignity and respect that you’d treat any other child with. Talk to him, not to me about him. Don’t talk about him like he can’t hear you. That’s not how it works. He’s also extremely empathic. He gets upset when others are hurting. He is ridiculously affectionate and loving. He’s so completely my mama’s boy. When I pick him up at his dad's he runs down the sidewalk and jumps up to hug me. He swells my heart."
"My big thing is I want people to know that his reactions are not bad behavior or bad parenting. A lot of it is just as mysterious to me as a stranger. We all do the best we can but ... He is not [neuro]typical and your response is not going to work with how he copes or how his brain processes things. Just because he doesn't conform to your standards does not mean that he lacks anything."
Check out Romper's new video series, Bearing The Motherload, where disagreeing parents from different sides of an issue sit down with a mediator and talk about how to support (and not judge) each other’s parenting perspectives. New episodes air Mondays on Facebook.