An autism mom stuck at home with her son on a hot summer day meditates
on the smallness of his world when inclusion is the only option.
Stock photo
By Feda Almaliti
It’s 95 degrees outside and I’m here at home with my little guy Muhammed. I call him my little guy because he is the youngest of my children, but little guy is 12 years old and already 5’10”. Muhammed has autism, the kind that most people don't like to talk about. He is constantly moving, vocalizing, and “fixing things” (because everybody knows that coffee mugs can only be on the left side of the middle shelf in the cupboard next to the sink, right?).
His language is limited but every other phrase is “want eat.” He is perpetually hungry, and did I mention he already weighs about 200 pounds? He finds solace in watching Dora videos, which he requests about 100 times a day. He grabs food at times when he’s not supposed to so we nicknamed him “Swiper the Fox,” but unlike the cartoon character he doesn't stop when we say “Swiper, No Swiping!” three times. He can charm the pants off you once you get to know him, and he is legit the coolest kid I know, and believe you me I know A LOT of kids ;).
Muhammed is never going to be a Sheldon or pass as a quirky kid with autism. He has his awesome days and the not so awesome ones where he’s a whirl of mental and physical chaos. But this boy has a calm and happy place, and it’s smack in the middle of a cool blue pool. But like most autism moms, I don't have a pool. I will not be blessed with a pool anytime soon unless some reality show takes pity and surprises me with an Extreme Backyard Makeover.
So, given the stifling weather and the long weekend day ahead, I desperately want to take him swimming, but where can I go? In theory we could hop to a public pool, Y, hotel, or friend’s house. But reality is hardly so accommodating. No matter how much we may opine that severely developmentally disabled people like Muhammed deserve equal access to the community (which they absolutely do!) invisible signs everywhere tell us to "Go away."
Let’s face it, when he’s having one of ‘dem days, people don’t want kids like Muhammed near their calm and carefully maintained pools and manicured gardens. He scares little kids. He scares adults. He might take off his bathing suit in public. He sometimes pees on the ground when we can’t get to the bathroom fast enough (it would be better if he did it in the pool like everyone else though, and don't pretend your kid doesn't). Sometimes he grabs strangers' food and eats or throws it. He annoys other pool-goers as he “sings” and yelps unintelligibly.
So, as you can imagine, we get evil stares. We are treated rudely or asked to leave. And he's not exactly invited back to my friends' pools. They are worried about "liability" or "disturbing the other tenants" or neighbors. Even my famous homemade hummus is not enough to persuade people to reopen their doors. So here we sit, dry-docked while the rest of the world frolics in the blue. Thank god at least we have air conditioning.
The idea of full inclusion is all too often an illusion for severely autistic people like Muhammed. Heck, if he attended a conference about autism discrimination he'd be kicked out in two minutes. So we should be alarmed by the rise of the militant inclusionista ideology that says no matter how profound their cognitive impairments or disruptive their behaviors, people like Muhammed should be included in the mainstream of community life at all times instead of "segregated" in special programs designed for them.
Segregated. Ouch, it sounds like such a horrible word. Brings to mind Jim Crow and whites-only drinking fountains.
But that's not what I'm talking about. I'm talking about self-imposed segregation …like nudist colonies, senior living facilities, women-only gyms or even smoking lounges in airports. Gosh, how I yearn for it. How desperately we need it! I literally have dreams of an autism island, but I'd totally settle for an autism kibbutz.
I imagine programs and places, away from the rules and consternation of the general community, where all of Muhammed's exuberance was welcome. Where he could be safe, and be totally himself, splashing and yelling to his heart's delight. This sort of positive segregation would open doors for Muhammed, instead of closing them.
"Heck, if he attended a conference about autism discrimination
he'd be kicked out in two minutes."
Of course my pool predicament is a microcosm of a bigger problem: disability-friendly day programs, jobs, housing, and therapeutic care—vital lifelines for parts of our population—are at risk given the direction of federal policy. The trendy mantra is "community integration" while options for the severely disabled slowly disappear into the black hole of red tape and de-funding.
It’s not that I don't want my son to be included, to the contrary, we work with him at home every day, and let’s not forget the various therapists, aka uncanonized saints, to come closer and closer to that goal. But I’m a realist, and Muhammed will never live independently in the community and I’m never going to be the next Beyoncé. So, if inclusion is the only answer for Muhammed, his future will look like today: isolated inside our house, with nowhere to go.
"But I’m a realist, and Muhammed will never live independently in the community
and I’m never going to be the next Beyoncé."
They say, “Why maintain an autism day program when Joe could just go to the local Y?” or “Why have sheltered workshops when Sam can get a competitive job at Safeway?” Please tell me, what are these people smoking and in which smoking lounge can I find them? Have they ever tried caregiving for someone like my son?
So let's make a deal. Let's ensure inclusion and integration for all those who want it. And let's support acceptance of all, including acceptance of alternative options for the Muhammeds of our world. Don't let narrow ideology throw our babies out with the bath, or, er, pool water. It's just common sense. In the meantime if you'll invite us over for a swim, we'd appreciate it.
(This is only MY opinion obviously but undoubtedly some people will misinterpret this piece to mean I believe that all people with autism should be segregated from the community, which I am not saying nor implying nor do I believe! But let the hate mail begin in 3, 2, 1….)
Feda Almaliti is an autism mother who lives in the San Francisco Bay Area. This blogpost was reprinted based on the original 2017 post at Autism Society San Francisco Bay Area.