inviting joy back into the conversation

It never fails– I open my computer and there is another story about an autistic child harmed, or killed, at his or her mother’s hands.

There is a big conversation that needs to happen around this. Huge.

Yes, part of the conversation is about family and mental health support, of course… but it’s really about the rest of us.

Why?

We as a society are talking about autism. And we have a lot to say about it. Almost always negative things.

Yes, autism comes with challenges. Big ones, sometimes huge ones.

It can come with co-morbid diagnoses: seizure disorders, sleep disorders, anxiety disorders, OCD, rage, sensory overload.

It can be very, VERY hard on parents. I’m not going to shy away from saying that. When you have two people with vastly different neurologies who are trying, all day every day, to understand each other and love each other and just functionally coexist, you are both going to be exhausted a lot of the time. (See also: all the stuff I listed above. Raising a child with those conditions is also hard.) This is not the child’s fault, it just is what it is, but BECAUSE it is, we need to acknowledge it.

But autism is not all fear and sadness and it is not a death sentence.

People who do not speak can still communicate.

People who do not make eye contact are still listening– and hearing when you think they’re not listening.

People who move their bodies in different ways are not always expressing an emotion that most closely matches how we are feeling when we move our bodies in that way. (Flapping and fidgeting does not always mean nervous!)

People who use their voices in different ways are not always expressing an emotion that most closely matches how we are feeling when we use our voices in that way. (Yelling does not always mean distress!)

Autism is people, and people are a lot of things. People contain fear and sadness and anger and frustration, and they also contain joy and love.

If we only talk about the scary parts, it’s going to be that much easier for parents who, for whatever reason (because really, it’s hard to process the reasons but whatever they are, they exist) are vaulting themselves straight over the line of acceptable parenting decisions, past survival mode, and into unthinkable territory– and a lot of it has to do with the pervasive culture of  abject hopelessness surrounding the autism world when too many people are somberly looking in from the outside and reporting on their fears. We lock joy out of the conversation and it needs to be invited back in.

Since I’m pretty damn tired of having my brain stuck on trying to process how a mother can throw her son off a bridge and I just don’t want to do it right now, I’m going to present this video of Hammy instead. She discovered a piece of furniture with a mirror backing that is exactly the right size for her to see her whole body when she bends forward a bit, and she loves it.

So if you’re also tired of picturing a small child thrown off a bridge by his mother tonight, I invite you to come instead watch two minutes of Ham being fully Ham. She’s delightful, I think you’ll agree, and I wouldn’t want her any other way. (And of course the same goes for her sister, who is, in this video, watching Super Why in the kitchen with her Nana.)

it’s hard to make new autism mom friends

I watched the mom and her son enter the waiting room. He was clutching the same big, round, brightly-colored plush animal that he’d brought with him the week before. She walked to sit in a chair along the wall across the room from me where she’d sat last week, and he started spinning and vocalizing happily near me and my girls, who were climbing on the chairs and rolling on the floor. The boy’s mother occasionally looked up from clipping the coupons she’d brought to check in on him. Her eyes flicked over to me once or twice, and I wondered if she was gauging my reaction to his atypical behavior. I smiled at her, trying to convey some sort of recognition, and wondered if she noticed Ham making some of the same kinds of happy noises from her spot on the floor, halfway under the row of blue plastic chairs.

I never really know how to start small talk with another person, but I’d missed my chance last week when I first “met” them and I knew that the following week would be our last before preschool, so I took aim and fired: “Coupons– smart! I usually just sit here playing around on my phone.”

Success– she smiled and we launched into some brief small talk. Beneath the surface I detected the delicate dance in which we both knew, but had to pretend we didn’t, that the other’s child was autistic. I don’t think of “autistic” as an insult, and yet, I know better than to be presumptuous and risk offending. We peppered our conversation with clues– I allowed the acronym “ABA” to slide in without providing context, indicating that I knew she knew what that was– until we hit a point where, I think, we knew we’d both said it in so many words.

As an aside, I wish we could just skip all of that and go straight to the part where we just say it already, but it seems like most other parents aren’t quite ready for that and I’m trying to make friends here.

We talked about preschool. I moved across the room to talk to her. She said her son wasn’t in a sub-separate classroom like mine are about to be because she wants him to be around “normal” kids. Not even an integrated class– she skirted the public school system, which likely would have offered some services to her son, and sent him to a private preschool with an ABA aide. Only “normal” kids.

“He imitates their behavior,” she said, “so of course, we want him imitating normal behavior.”

Ah. There it is.

It’s hard to make autism mom friends.

I don’t expect everyone to do things exactly the way I’d do them. Quite the opposite, really– I need my friends to help me navigate, not just tell me I’m holding the map correctly as we head for an iceberg. I don’t want yes-men, I want other ideas. Other possibilities. Gentle prodding, telling me to consider another angle sometimes. This is all uncomfortable but good.

But.

There’s a foundation to be laid, and everything surrounding autism is rife with controversy. Some things I can’t abide, and seemingly minor parenting decisions all point back to methodologies and philosophies of raising autistic kids that turn really quickly into friendship barriers.

I’m okay with a friend feeding her kid M&Ms for dinner on Thursday because the kid has been screaming all day and her spouse has been on a business trip and she’s just exhausted. I’m okay with it because I’ve been there. The hypothetical friend and I share the philosophy that sometimes you just gotta lean in and roll with it because toddlers are terrifying and mighty creatures, and as long as your life consists of a baseline of 95% good choices and 5% survival choices, you’re probably doing okay. But I would not be able to maintain a friendship long-term with someone who fed their kids M&Ms for dinner every night for weeks on end, with no concern for nutrition. There is a fundamental difference.

I can’t sustain a long-term “we understand each other, and being friends with you fills the hole that my non-autism-parent friends just can’t” relationship with someone whose primary concern for her child is that he learn to adapt and imitate “normal” kids (normal really is one of my least favorite words), or someone who doesn’t consider how it might feel to deprive her child of the chance to have an autistic friend who “gets” him. It makes me wonder if she sees him spinning and vocalizing with joy in the waiting room– bothering absolutely no one– and processes the event through the filter of how she thinks other people are seeing him. He’s a sweet little boy! I love the happy sounds he makes. I love the happy sounds my girls make, too– even the impish little noises that tell me specifically in what way Chicken is misbehaving (she actually has different happy noises for bothering the dog, taking the roll of contact paper out of the art cabinet she’s not meant to be in, and climbing on the table). It’s part of who my girls are.

I won’t fault a parent for having a hard time with autism itself, and I know it’s controversial to even suggest separating out autism from the autistic person, but listen– at the very least, the happy parts of autism are part of your child. Maybe the hard parts with seizures and sensory overload and screaming and anxiety, those you are allowed to separate out and get angry at. But damn, enjoy the happy noises, even if they happen in an otherwise quiet waiting room. It’s cute as hell and it’s communication. Normal is stupid and boring.

There are other reasons to be wary of potential autism mom friends. I run waaaay the hell in the other direction when vaccines get introduced into the conversation. No one ever brings that up at all unless it’s to question if they played a role. I won’t even entertain that one anymore. That’s red flag #1. Other little things, I can handle. I do ABA, you do FloorTime or SonRise? That’s okay! We don’t have to live out our days in identical fashion to relate to one another. But the premise has to match, and in the volatile autism world, it’s hard to line that piece up with someone else and get a match.

I do have a few autism mom friends, and luckily, some are even local. At the very least, finding your tribe is a bit easier when the internet lets you cast a wide net. But man… those incidental moments when a potential friend seems to serendipitously appear before you? I wish more of those could work out. It means so much to be able to lock eyes across the waiting room and tell someone without words that you understand.