Let me just start with two words: Fuck Autism. Fuck it. Fuck it.
And to any of you who want to start in on me for being angry? Fuck you too.
I’ve seen what having an autistic child has done to my sister. Nonstop work, nonstop expenses, nonstop stress. All for the magic of having an adult son who has the emotional maturity of a 14-year-old and the vocabulary of a sailor.
You’re supposed to understand it’s a disorder. But that becomes very hard when the main symptom of autism is to produce the personality of the world’s most spoiled and self-centered asshole. High-functioning they call it. But not quite high-functioning enough to hold a job, or to finish schooling – just to be a perpetual burden to his mother, emotionally and financially. (And the sad part is that my sister is LUCKY – her son is in a group home a good portion of the time, he can handle his own hygiene issues, and he isn’t violent or non-verbal.)
Autism – the surprise sniper in the feminization of poverty. Because the care of autistic offspring – most of it unpaid – falls disproportionately upon women. Like most women who gave birth to an autistic child, my sister is going it alone; her husband ran like a scalded rat, the way so many men do when they get a “broken” kid, especially a son. Not a penny of child support, of course. It was my sister who stayed for 30 years at a job she hated to make sure she had decent medical insurance to cover the therapies and medication for her son, it was she who paid for everything else, who did all the work with him when everyone blamed her for his condition, fought bureaucracies to get him any kind of help. (Her doctor said she was too stressed and recommended a vacation; she said “Oh, are YOU volunteering to take my adult autistic son for 2 weeks?” Turns out he wasn’t.) Care for disabled offspring is disproportionately the burden of the parent who’s underpaid and overworked to begin with.
I’ve been helping her with him – the only nearby relative who does so. Surprisingly, two exhausted middle-aged women with a ton of responsibilities find it hard to sympathize with an intelligent adult who spends his time eating, sitting on his butt, eating, reading comics, eating, playing video games, eating, watching anime, and eating – and complaining about those things. Case in point:
I helped my sister go shopping the year she got him a flatscreen TV (she frantically promised him one just to keep him from a meltdown at his grandparents’ because they wouldn’t let him hook up one of his game systems to their flatscreen – yes you’re not supposed to spoil kids, but tell that to a 60something woman who has to deal with a 200+ lb adult male who loses his temper at the first whisper of confrontation). Six goddamn hours in three different electronics stores around Christmastime – with the extra fun of us fighting to get assistance by misogynistic young salesmen who didn’t want to be bothered helping a couple of old women buy a TV when they’d rather talk game systems with their fellow bros. The price of the screen doubled because of the shipping, installation and adaptor charges to get the device hooked up at her son’s group home. And the end result of all that agony and expense? He whines and complains nonstop that she didn’t get the RIGHT brand of flatscreen, that his nonstop game playing burned images in it and it’s ruined now and the cabinet isn’t big enough for his adapter and he needs a bigger stand for it or maybe get it bolted to the wall and … (This, by the way, to two women who still own CRT TVs.)
Other fun aspects of living with this man: The time he called his grandparents to chew them out for not giving him enough gift money at Christmas. Or the time he smashed a burrito into his uncle’s face while he was driving (fortunately they were on a side-street and no one was hurt or killed) – his assault triggered by a discussion of his upcoming birthday. Or the time he had a multi-plex tool confiscated by airport security and he got so angry he tore up the book his mother was reading – the book I’d loaned her.
Then there’s just the everyday way he yaps nonstop about his cartoons and video games and his cartoons and his video games and his fucking cartoons and his goddamn video games to completely disinterested people who keep telling him they’re not interested. (I used to like some Japanese anime; I can’t stand it now, just from the fact that he won’t. stop. talking. about. it.) Or the way my sister loses social contacts, one temper-explosion by her son at a time.
The end result of all my sister’s hard work? A flat “I’m sorry I ever gave birth” on Christmas night after he was his usual self (getting angry at us for telling him something he didn’t like, pissing and moaning nonstop about writing two thank-you notes for two very generous cash gifts, and the straw on the camel’s back was his verbal abuse to his mother because she asked him to go into the bathroom when he wouldn’t stop loudly farting).
My sister was an artist in San Francisco, living with another artist, before she chose to keep that pregnancy. Those days are long gone. Her son will be her burden for the rest of her life. Then he’s MY burden until I die – because I promised to provide financial-trustee assistance. (And because I never had kids, never wanted kids, I have savings and can help her out.) Good luck finding any assistance for autistic people who’ve aged out of the system. My sister’s not happy with his group home as it’s little more than glorified babysitting, but aside from the financial considerations there simply aren’t enough good situations that exist, period, at any cost, for adult autistic people.
And I’m not supposed to think things like this, but on nights like this past Christmas I see my haggard, teary-eyed sister, and her sullen-faced behemoth of a son, look into the future for both of them, and I think, “Please, God, let them come up with a pre-natal test for autism.”
If you want to fight me on this, go ahead. If you want to flag this diary into invisibility for not being all sunshine and smiles about the magical life of very special children, do so.
And if you’re a woman who’s full of stories about how wonderful life is with your own autistic son, I’ll assume he’s under 10 years old and you are in your 30s and in your physical prime; add 30 years to both of you (and the testosterone influx of puberty to him), have your husband run away and leave you with all the work and bills, realize that your only plan for your son's future is a vague hope that he dies the day after you do, and then get back to me.
