What happens when the regular world has had enough of my son's autism
By Feda Almaliti
Oh Muhammed, or Mu, as we like to call him… my sun-shiny 13 year-old autistic boy, with his big smile, bigger hugs, and that mischievous sparkle in his eye. I’m literally kvelling just thinking about him.
But the rest of the world? Its patience seems to be wearing thin. As I explained in a post last year, Inclusion Sucks, Or Why My Son Has Nowhere to Swim this Summer, Mu has the sort of autism that makes him welcome, well, not a whole lotta places. So naturally we’ve had another summer of rejection.
Oh Muhammed, or Mu, as we like to call him… my sun-shiny 13 year-old autistic boy, with his big smile, bigger hugs, and that mischievous sparkle in his eye. I’m literally kvelling just thinking about him.
But the rest of the world? Its patience seems to be wearing thin. As I explained in a post last year, Inclusion Sucks, Or Why My Son Has Nowhere to Swim this Summer, Mu has the sort of autism that makes him welcome, well, not a whole lotta places. So naturally we’ve had another summer of rejection.
Here’s how it started. Mu can speak some sentences, though usually only when the planets and Ben & Jerry’s align, and even then he’s not understood by non-familiar listeners. Therefore he is considered functionally nonverbal. So to help him communicate he uses an Augmentative and Alternative Communication device (AAC). The AAC has been a godsend. It reduces his frustration and lets him bark at me like a regular teenager. His device shouts, “Want fries!" (his favorite vegetable) and “Want bubble water!” (In my experience, the word “please” drops from the English vocabulary between ages 13-17, autism or no.)
And it’s not just about food. He can use it say, “Fix that!”— “that” being soap dispensers (three of them, yes, there must be three) when not placed at perfect 90-degree angles. Not to mention helping him medically, since he can usually use it to tell me where the “hurt” is. Mu wears the device pretty much all day long. It’s his voice, an essential.
Now, Mu’s autism is really severe. He can be aggressive at times, have tantrums, and massive meltdowns. And when he does, you better believe the device is right there through it all. So our insurance policy includes getting a loaner during repairs. But recently the company that makes the device denied Mu one. Why? He was on the “Do Not Loan List.”
I mean I’m an Arab and a Muslim so I’ve totally heard of the Do Not Fly List. I’ve even heard of the Do Not Call List. But a Do Not Loan List? What’s the heck is that? Like a three-strikes law for autistic people?
And it’s not just about food. He can use it say, “Fix that!”— “that” being soap dispensers (three of them, yes, there must be three) when not placed at perfect 90-degree angles. Not to mention helping him medically, since he can usually use it to tell me where the “hurt” is. Mu wears the device pretty much all day long. It’s his voice, an essential.
Now, Mu’s autism is really severe. He can be aggressive at times, have tantrums, and massive meltdowns. And when he does, you better believe the device is right there through it all. So our insurance policy includes getting a loaner during repairs. But recently the company that makes the device denied Mu one. Why? He was on the “Do Not Loan List.”
I mean I’m an Arab and a Muslim so I’ve totally heard of the Do Not Fly List. I’ve even heard of the Do Not Call List. But a Do Not Loan List? What’s the heck is that? Like a three-strikes law for autistic people?
"I'm an Arab and a Muslim so I've totally heard of the Do Not Fly List.... But the Do Not Loan List? What’s the heck is that? Like a three-strikes law for autistic people?"
I pleaded with the rep, telling him the AAC is his voice, not a vacuum cleaner! The rep still wouldn’t budge. Too many loans, and my son was Out.
Anyway, even without a loaner, Mu managed to ask to go swimming about 100 times. But guess what, we can’t go. Because, wouldn’t you know, we are also on the Do Not Swim List.
We recently took Mu to a nearby community pool, and let’s just say things didn't go so smoothly. We were asked to leave.
Anyway, even without a loaner, Mu managed to ask to go swimming about 100 times. But guess what, we can’t go. Because, wouldn’t you know, we are also on the Do Not Swim List.
We recently took Mu to a nearby community pool, and let’s just say things didn't go so smoothly. We were asked to leave.
"Let's just say things didn't go so smoothly. We were asked to leave."
As soon as he blasted through the door, Mu jumped on, and broke, the pool’s handicap chair. Yes, you know that something that exists to make the pool more inclusive.
I gotta admit… not cool Mu. That was way outta line and I laid it down to him. But believe it or not, that’s not why we were asked to leave. It’s because he was bothering the “moms and their young children” and taking “bites out of the swim noodles.” First off, I’m fairly certain there were chunks missing in the swim noodles when we got there—hey, it’s not like typically developing kids are all well behaved angels. And second, if allowed to return I would bring an armful of new ones as gifts—the Dollar Store is, after all, an autism mom’s best friend. But for now, it’s no AAC and no pool for Mu.
Now, I know what you are thinking—if Mu can’t behave in a way the public expects, at least there's help at home, right?
Well, think again, because our behavioral agency recently put Mu on the Do Not Serve List.
After years of working with us they decided they wanted to drop Mu because they couldn't “appropriately” serve him (code for we don't get paid enough to deal with your kid). So, after much advocating we were able to secure help of another agency.
Then, within a week we faced another walkout.
It started with the toilet. If something has a moving part, Mu will most certainly figure out a way to break it. It’s not that he means to or does it on purpose. He’s just very strong and doesn’t realize his own strength most of the time, some of the time, okay… all of the time.
I gotta admit… not cool Mu. That was way outta line and I laid it down to him. But believe it or not, that’s not why we were asked to leave. It’s because he was bothering the “moms and their young children” and taking “bites out of the swim noodles.” First off, I’m fairly certain there were chunks missing in the swim noodles when we got there—hey, it’s not like typically developing kids are all well behaved angels. And second, if allowed to return I would bring an armful of new ones as gifts—the Dollar Store is, after all, an autism mom’s best friend. But for now, it’s no AAC and no pool for Mu.
Now, I know what you are thinking—if Mu can’t behave in a way the public expects, at least there's help at home, right?
Well, think again, because our behavioral agency recently put Mu on the Do Not Serve List.
After years of working with us they decided they wanted to drop Mu because they couldn't “appropriately” serve him (code for we don't get paid enough to deal with your kid). So, after much advocating we were able to secure help of another agency.
Then, within a week we faced another walkout.
It started with the toilet. If something has a moving part, Mu will most certainly figure out a way to break it. It’s not that he means to or does it on purpose. He’s just very strong and doesn’t realize his own strength most of the time, some of the time, okay… all of the time.
[Although I feel in a recent case he was plotting against me. Seriously, how did he even think to remove the toilet tank cover and stick in whole roll of toilet paper, then put the cover back on, and don’t even ask me what the plastic thing was in the middle of the roll. Again, not cool, Mu.]
Anyway he broke the toilet handle and tank so often our handyman finally insisted on installing a commercial version made of one solid piece.
Problem solved? Hardly, because then Mu broke off one of the sink handles, and then the doorknobs to the bathroom. Three strikes, again.
Even the handyman had enough. He quit, too. Yes, the ultimate nightmare for us autism parents—the Do Not Fix List.
Anyway he broke the toilet handle and tank so often our handyman finally insisted on installing a commercial version made of one solid piece.
Problem solved? Hardly, because then Mu broke off one of the sink handles, and then the doorknobs to the bathroom. Three strikes, again.
Even the handyman had enough. He quit, too. Yes, the ultimate nightmare for us autism parents—the Do Not Fix List.
Inclusion is a hot topic in disability circles, but when our kids can’t play by society’s rules, inclusion can truly suck. Instead of some fantasy of joyful acceptance, we get black-listed. Over and over and over. How I dream of places, spaces and programs fully accepting of our special children. Autism-friendly rules, not “If you act autistic you’re out” rules.
"Instead of some fantasy of joyful acceptance, we get black-listed."
With that in mind I end on a more positive note. At Autism Society San Francisco Bay Area’s Summer Pool Parties we make sure an autistic kid can be him or herself. Where they can chew on pool noodles, bellow and flop around, and no one judges them. So here we are, me in the burkini and Mu in his element. A place, however small, where everyone with autism belongs... on the VIP List. If only the rest of the world were so accommodating.
[End note. Please read before you send me hate mail. I believe all persons with autism should be accepted as they are anywhere they go, while I’m still holding out for my autism kibbutz or island. Whichever comes first. It’s all about choices. I respect everyone’s choices. Even yours.
And yes I’m a Muslim who likes to speak some Yiddish, okay? Kvell = to gaze upon with love and pride.
And finally, for those who don't like realities of autism discussed in public, I'm not shaming my son. There is no shame in behaviors one cannot control, it's like saying there's shame in a seizure for someone who has epilepsy. If you are ashamed for Mu, well shame on you.]
Feda Almaliti is Vice President of Autism Society San Francisco Bay Area.
[End note. Please read before you send me hate mail. I believe all persons with autism should be accepted as they are anywhere they go, while I’m still holding out for my autism kibbutz or island. Whichever comes first. It’s all about choices. I respect everyone’s choices. Even yours.
And yes I’m a Muslim who likes to speak some Yiddish, okay? Kvell = to gaze upon with love and pride.
And finally, for those who don't like realities of autism discussed in public, I'm not shaming my son. There is no shame in behaviors one cannot control, it's like saying there's shame in a seizure for someone who has epilepsy. If you are ashamed for Mu, well shame on you.]
Feda Almaliti is Vice President of Autism Society San Francisco Bay Area.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.
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