Wednesday, February 12, 2014

Responding to Salon.com

[If you are Autistic or a parent of an Autistic, you will probably get severely triggered by this. T/W: mild swearing.]

Today [as in when I started writing this] at around 7:00EST (I can't sleep) Salon.com posted this article from 2011:
As the mom of a 4-year-old with Asperger's, I'm used to accusatory stares when he throws fits. Does it get easier? --by 
Since Salon normally posts quality life stories, I expected to find a decent enough article to read as I couldn't get to sleep. Sadly, I was wrong. The article followed a basic format of inspiration/tragedy-porn endemic to articles about Autism: 1) something is wrong and people are blaming me; 2) I'm in denial of there being a "problem;" 3) I got him* a diagnoses and I refuse to believe it; 4) "my life is a daily struggle, I now understand that one John Mellencamp song--life goes long after the thrill of living is gone " and/or he's hopped up on drugs and I feel better. 80s music references aside, this type of article creates an atmosphere of fear and hate towards Autistics and Disabled people in general. Since I believe this is the prototypical article about Autism, I believe it is important to deconstruct every little detail about it. (*Female representation in media related to the Autistic community is way out of proportion to what it should be. This leads to women not being diagnosed as much, which perpetuates the stereotypes and patriarchy in Autistic circles.)

Let's start from the top (bold portions will be specifically unpacked):
"I am the mother you shun at Walmart. Your disapproving eyes dart from my disheveled hair to my 4-year-old son. It’s August, but he’s dressed in a long-sleeved shirt and black-wool leggings. He also sports a cowboy holster and sheriff’s badge. Any minute now, he’ll start yelling and shrieking about the toy he wants to buy. You wonder what is wrong with him.You wonder what is wrong with me. I wish I could assure you that we’d be out of your way soon, but I have no idea how long this harried Walmart nightmare will last. All I know is that this will be our sole outing this week, and that I only brought him here out of sheer desperation. We are out of milk, and if my son does not have milk tonight in his special cup, he will have a horrible hour-long rage. He will hit me, crawl under the table, scream and throw things. His little sister will cry in fear. The dogs will cower behind the sofa. I will pour myself a big glass of chardonnay. When the rage, which may last anywhere from 15 minutes to three hours, finally passes, I will cuddle him, massage his shoulders, put him to bed and say, “I love you.” Then I will go out to the living room and cry and drink some more.
My son has Asperger’s syndrome. Most people have heard of it by now; even Facebook founder Mark Zuckerberg is rumored to have it. I have my doubts, though. I see little resemblance between the billionaire genius and my 4-year-old son. I wonder if the Facebook founder had daily, explosive, irrational fits when he was 4. I wonder if his mother drank. [emphasis mine]"  
 Many parents of Autistics (my parents included) have this issue. A store is a loud place with many distractions, bright lights, and many people--it is simply overwhelming. I get it. I've been in many of these situations. One time in a store (I was maybe seven) I ran away to a quieter area of the store, it's garden section. I was having a difficult day and the stress of the store made it far too much for me to handle. To my credit, I at least told my mom where I was going (yes, yes I did, mom) but she didn't hear. That certainly caused a scene. Many other times I have screamed or shouted in a store, because when an Autistic is stressed to the point where they need to hide, etc. their eloquence goes completely away (this is true of non-verbal Autistics as well, if I understand the posts I've read from them). The only way I can reasonably communicate that the situation seems dangerous to me is to scream. In addition, if "making a scene" includes stimming, then I would have a meltdown when forced to stop. Stimming is what Autistics like me, like your child uses to calm down. I would like to ask: whom are the actors in this situation? I can identify three main ones: you, your son, and the people who designed the store. It was their decision to promote an environment that is almost completely inaccessible to Autistics. Is it just for other parents to fault you for the failure of management to care about all those who use their service? It's not unheard of; Walmart and all other stores built since the passage of the Americans with Disabilities Act have parking for the physically-disabled.

As for the milk in a special cup anecdote, well, yes a trait of Autistics is our need for order. When I was a small kid still to this day, I need to sit in a certain spot in my house if I can calm down after a long day of interacting with people and sensory stimuli. (I am currently sitting there listening to Pink Floyd.) It's literally one spot. If anything is placed there, say groceries or boxes, etc. I will get very distressed. Whole arguments have been catalyzed by not being able to sit there first thing in the morning or after school. I'm serious about it. Caring for his need of having milk in a specific cup is not unlike feeding, clothing, or reading a bed-time story to him. It's his way of getting peace. When you take that away from him, it is an attack. Any four year old I know is not the greatest at managing emotions, so imagine a neurotypical four year old placed in a situation that is incredibly distressing to the point of extreme stress, perhaps a camping trip gone wrong. I've seen things like this happen to other four year olds whom are, as far as I can tell, completely neurotypical. They cry, scream, and maybe, just maybe, they'll hit someone. His needs are monotonous, sure, but they are not terrible. I suspect the part that makes his need for milk in a specific cup, maybe even a specific time, unacceptable is that "normal" kids don't do that. I get it, the rules of parenthood are passed down from generation to generation. It relies on a falsehood of normality as to make it simple. To have a child that differs so wildly from this box of normality can be very distressing. You might feel that it's "not what you signed up for." That's valid. However, we encourage parents to support their kids if they have depression or other different needs, so what is the problem with the needs of an Autistic being met? If it helps. think of it as something akin to his bedtime. In addition, you know when he calms down enough to hold him and massage his shoulders? As an Autistic myself, I can tell you that if you did that at the beginning, maybe 80% of the time he will calm down almost immediately. Hopefully you have learned that now that he is diagnosed, but the passed down rules of parenting omitted that section, so it's fine if you don't.

As for drinking some wine, sure, that's your way of unwinding. It almost seems like a ritual habit. It may not be the healthiest without moderation, but it is a routine that you follow so you can begin the ritual of winding down. That's not unlike your son and his milk. The fact that you cry is normal. Toddlers are difficult; a toddler that you struggle to understand how to parent because you were never taught how and have other parents judgmentally blame you for it is completely justified. Having an Autistic child is difficult, I know I am. But who's causing this difficulty? Is it your son who has the audacity of being wired a different, but not lesser way? Or is it your unbearably judgmental friends and family? Words hurt. The bullying you experience is not the fault of yourself or your child; it is the fault of the aggressor. Sadly, I expect this bullying to intensify because of rumors driven by stereotypes and fear, like the one about Mark Zuckerberg. Computer nerds and Autistics are far from being mutually exclusive, but they are not one in the same--far from it. It seems as though any awkward or socially questionable thing uttered is followed by "that's so Asperger's" or the like. These attitudes have root in the three of the many great evils of the Autistic plaguing the Autistic community: "aspie supremacy," Autism Speaks, and the show The Big Bang Theory (seriously, there is so much wrong with that show, but that's for a different time).

The article horrifyingly continued:
"I first realize we have a problem when my son is 18 months old. My family tells me his screaming fits are just his way of “pressing my buttons.” They say I’m spoiling him; that’s why he throws tantrums when he doesn’t get his way. But they can’t explain his extreme negative reactions to large crowds and loud noises. Once when we’re in a public restroom, the automatic toilet flushes, and my son throws himself against the door and begins beating on it in his desperation to get away. The lady in the next stall glares at me when she comes out. I know she thinks I was hitting him. Another time at church, the organist starts playing, and my son dives under the pew in front of him. The man beside us moves over, far over. [no emphasis because it would be all highlighted]"
Your family sounds like a bunch of up-tight people. Have you considered telling them to be quiet? Also, "get his way?" Seriously, you need new family/friends. Gallows humor aside, the glares and stares are probably the worst thing about raising a child outside the neurotypical box. It can make one feel trapped, I'm sure. As someone who has been that child, I can tell you it hurts us, too. My feelings of self-worth are incredibly damaged from that time. So many people with so many words and so much vitriol. All the while my parents being equally stressed. It's tough; I know. But who's the issue here, the victim or the aggressor? The world is aggressively and specifically designed for the able bodied and neurotypical--the stares and glares are just icing on the ableist cake. And by the way, that man who moved far away is probably an insipid, mean person--it's best not to deal with them. Just know in your heart that ableism is not your fault.

The piece continues:
"I think my little boy is just sensitive, until at age 3, he starts having bathroom issues. He holds it all in until his little tummy was bloated, and once he doesn’t go for four days.
I take him to the pediatrician. I have to tell elaborate lies about where we’re going, because by that time, doctors scare him. When he got his shots for preschool, he cried and screamed for a half-hour straight. Once we pull into the parking lot, I have to bribe him with money — a lot of it — just to get him out of the car. “I want paper money. No metal,” he says.
After I explain the bathroom problem, the pediatrician tells me I should make my son sit on the toilet after each meal for approximately 10 minutes. I pay my $50 copay and walk out the door. That night, I find out that 10 minutes is a long time when you’re yelling, “Sit there, damn it! Sit there!” When he finally does go, the toilet is smeared with feces. I assure my husband that it was just a mistake; our son is not smearing feces, he is not destined to become an ax murderer. I believe this to be true. No, I need this to be true. Desperately [emphasis mine]." 
Hah, I can top that! Once I was completely and totally constipated for six days! Many times over. I too have gastrointestinal issues. No pun intended, but if anything on this list is truly horrifying this shit is it. I know it must be scary, but did you really have to type Axe Murderer? Well that makes me (and your son when he reads your piece) feel awesome. You know, even though I cry every time another child is murdered by their mom for being Autistic. Or when I get so inflamed by the lack of justice for PoC in my country that murders of Black teenagers are effectively legal. I happen to have empathy. But, nope, AXE MURDERER!!! Yep, totally. Oh by the way, doctors (well, psychologists) scared me at that age, too. I'm not exactly sure why, but it might, might have had something to do with the fact that when you are a toddler, having to habitually go somewhere that even popular children's television finds scary, might be a tad scary. Plus, getting a shot hurts like all hell. If I wasn't so anti-VILE and her like, I'd probably not like getting vaccines as much as I do. Look, I get that the tone of the piece needs to be like this, but really? Really? Really?! 
For a few weeks, things seem to be getting better, but then my son begins to pull out his eyelashes. Then he picks at a mosquito bite until it bleeds. One time, he sucks on his arm until a red bruise appeared, ironically shaped liked a small smile. He becomes more difficult for me to handle too. When I run out of his children’s toothpaste and put regular, adult toothpaste on his brush, he screams for an hour afterward. He says it was hot and burned his tongue. He accuses me of trying to kill him.
Self-injurious behaviors, as explained by most recent post, are a sign that less effective stims aren't working. Now, if your kid is puling out his eyelashes, then he feels less pain from that than the sensory input he was getting. Sucking on his arm, something I do still to this day, shouldn't get that result unless he is really distressed. As for me, my favorite self-injurious behavior that actually hurts/causes limited damage is twisting and pulling my hair out. It's been my favorite stim like that for a while now. When I was nine, for example, a girl once walked up to me when I was doing this and asked if "I was wanting to get dreds." Being white and not a Bob Marley fan (yet), I did not actually know what she was talking about so I indignantly replied "yes." She then proceeded to tell me that I was doing it incorrectly and terrible things would happen with it. She was also white, so she was probably regurgitating some racist bullshit her parents taught her, but that's not my point. The point of that story was to show that it's not the end of the world if he does those behaviors/that was the first story I remembered off the top of my head. So yeah, your son has sensory processing disorder and is hurt by sensory issues. Well, since that didn't come in the proverbial parental-instructions-manual (trademarked), it shouldn't be expected for people to understand that. Now if he gets a diagnoses (next paragraph), I would hope the attitude would change a little bit, but...
Our pediatrician finally recommends a psychiatrist. “He is displaying some signs of Asperger’s syndrome,” he says quietly. “I’d like to refer you to this new doctor who specializes in child psychiatry.” For once, my son is not the one crying when we leave the office. I am. I Google the terms when I get home, and cry some more. I refuse to believe my son has autism. There must be some mistake. My son is smart, verbal and creative. Like so many other people, I have no idea what the “autism spectrum” really is, and it makes no sense to me that my intelligent, funny, beautiful little boy has anything in common with nonverbal, special needs children. My husband is as shocked as I am. We talk about it endlessly, and finally decide to get a second opinion.
This time, we take our child to a children’s hospital. They give us 40 pages of forms to fill out, and ask his preschool to fill out papers too. Four months later, the diagnosis comes back: Asperger’s syndrome, attention deficit disorder and oppositional behavior disorder. My husband starts to ask questions, but there are few answers. The Nice Doctors give us booklets and the names of parent-support groups. They refer us to a specialist whose office is two hours away, because there are no child psychiatrists in our town who are taking new patients.
The whole thing would need to be highlighted again. This is just ugh. Other than the fact that this whole thing was incredibly ableist, I understand it's common. Oh, and the complete victim behavior here is a little bit outrageous. I'm going to hope this is hyperbolic because it makes a good essay--hey, we've all done it. (Please don't read this Mr. Kendrick.) So your child is getting hurt, and you are the victim. Yeah, because we can obviously choose how to wire our brains and we're maliciously hurting you. Jesus, this is how Autism Speaks must trap people. Cue next quote...
I’ll be honest. I don’t do much of anything right away. I can’t. When my family asks what the doctors said, I write them an email: “This is hard to write. He has been diagnosed with autism. It’s on the high end of the spectrum, called Asperger’s syndrome. [I am ashamed of this disclaimer, but still, I write it.] I know one day we will be the Poster Parents and do fundraising and have benefits to raise awareness. But for right now, we are shocked and panicked and grief-stricken.”
No one writes back. Perhaps they are just giving us a little space, I think.
Seriously? That must be how they do it. Also, why did psychologists ever peddle (and still peddle) the notion of low and high functioning when it has no scientific basis? Right, because obviously Amanda Baggs is so low functioning when she would have written a better piece than this than me. But, whatever, you're uneducated. Hopefully you'll contact other Autistics, but based on the latest shitstorm at The Feminist Breeder, I doubt it. Ugh, please, please let this be sensationalist hyperbole!
Finally, grief subsides a little, and I begin to get back to the work of trying to help my boy. When I try to make an appointment with the child psychiatrist, he says, “I have a specialized practice, and I don’t take insurance. It’s $300 for the first evaluation, which should last an hour and a half and $150 for each session after that. I don’t do counseling; I just manage medicines. Now what was your son’s diagnosis again?”
My son is sitting beside me. I’ve never said those words in front of him. “Asperger’s syndrome,” I whisper. I’m not even sure I’m pronouncing it correctly.
“The first appointment I have is in three months,” New Doctor says. My son doesn’t hear a word. He is looking at Halloween costumes in a magazine. Halloween, or any holiday, ever, seems very far away to me. 
RUN, RUN THE FUCK AWAY, RIGHT NOW!!! RUN AS FAST AS YOU CAN AND DON'T LOOK BACK. Okay, so let's be clear, taking medication for anything should NOT carry stigma, but please don't make that the first thing you do. Still, I respect that you want to help your child feel better. That's the best thing a parent could do, care for the welfare of their child.
After three months of daily rages punctuated by two threats to kill me, we visit New Doctor. His office is resplendent with a water fountain in the foyer, deep burgundy couches in the waiting room, and what looks to be a real Tiffany lamp.
“I still can’t believe my son has autism,” I say to New Doctor, still hoping he’ll tell me it’s a mistake.
“This will be a problem until you accept it,” New Doctor says, somewhat harshly. “We will put him on this anti-psychotic medicine, try a social skills class, and enroll him in an occupational therapy program. This can work, over time. “ 
Run, please for the love of God run away from these types. Now, I did occupational therapy, but that truly did nothing from what I remember. I was put on an anti-psychotic as well. Worst thing ever. Social skills classes do nothing and are incredibly demeaning from my experience. Everyone's experiences will be different, and different things work for different people. This doctor happens to be an ableist creep. The idea that you should chemically straitjacket someone for being "weird" is totally abhorrent.
I tune out. It’s the word “time” that hits me. I am already stretched to my limit. I work 40 hours a week. I take my children to the pediatrician, dentist, eye doctor and reading specialist; they both are in swimming lessons, and my husband is often gone because he works for the military. But, sure, let’s throw in some more classes.
I'm going to interpret this as you being sarcastic which would be awesome. I'm going to hope you said that to the doctor, because from what I've read, he sounds like a dick.
Now, the doctor is saying that I’m doing a good job. I don’t believe him; he sounds too patronizing. He also tells me things might get worse, especially when my son hits adolescence. He rattles off a long list of problems he will likely encounter — ordinary things like peer pressure, alcohol and drug abuse, hormones — all exacerbated tenfold by his special needs. It’s a glimpse into the future as my son’s mother, and to be honest, I hate what I see. Where will I get the guts, help, information, help, respite, help, time, help, steadfastness, help, money, help, love, help, energy, help, I need for him in the coming years?
SUSPICIONS CONFIRMED. Your child isn't some kidnapped soul or an Autistic Tsunami or whatever. Sure, there's going to be plenty of challenges. He is likely to face depression, extreme social anxiety, and lack of trust. Based on his gastro-intestinal problems, holy hell he's in for a rough start at school. I know. I dealt with it. But he's no more of a lost child than I am. My mom purportedly felt this way when I was his age, and I think triggered by this piece because of it. I'm still writing right now at sixteen. The world didn't implode. It's still here.
About two months later, as the medicines kick in, the New Doctor turns out to be right. My son does indeed get better. The rages have stopped, for the most part, except when we go to crowded, noisy places, like a restaurant, like a school concert, like Walmart. I have cut my hours at work so I can take him to therapy appointments. I have learned to prevent a lot of problems for him by sticking to routines and eliminating a lot of extra things from our lives. It is hard. Very hard. Life seems … sparse. But still, I see improvement, and I cling to it. My son seems more content, more balanced and more — I hate to use this word — normal.
Me? I’m not sure I fared as well. I’m not normal anymore. I am tired. And to be honest, I blame myself, I blame my husband, I blame Old Doctor, New Doctor and Nice Doctor. And on a lot of days, I blame my son. I know I’m not supposed to, but I do. I’m working with another psychiatrist, this time for me, trying to get past all that blame and anger.
Until I do, I’m just another mother in Walmart, walking fast, trying to avoid eye contact.
Well, yeah, he's chemically unable to do stuff. I was put on that stuff, too. I know how he feels more or less. And truly, it's a frickin' shame of our society that forces neurodivergent children's parents to pay more for therapies to capitulate their child to a society exclusively built for neurotypicals, whilst simultaneously forcing people to work fewer hours to do it. That's cost-shifting at its most ugly; it is ableism. As for the last emboldened  piece: don't worry, your child will, too! Yep, self-hate all around!

______________________________________________________
[Note: the tone of this will get super harsh now because I ought not be nice to fucking Salon.]

To Salon: fuck you. No, fuck you. The only reason you posted this was for clicks and ad revenue. You even put a disheveled, shrieking child for the cover. This peddles the notion that we are a burden in a clearly tragedy-porn format. You know why she might have been devastated that her child was--GASP--Autistic? Because you and all the rest of media say it's the worst thing ever, shut out Autistic voices, and promote your agenda: sameness. Maybe instead of taking your marching orders from Autism $peaks, you should listen to us. Thank you.

3 comments:

  1. Like like like like. Excellent rebuttal/rant/reasoning. I was nodding my head at everything you wrote. There is so much work to be done to make sure parents don't get that "doom and gloom" message when their child is first diagnosed, and articles like this do NOTHING to help.

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  2. I learned more about Autism and Asperger Syndrome in the last few minutes reading this incisive, well written, passionate piece than I have in two years in graduate school pursuing a master's degree. Thank you for being a light in the world. I will be sharing this.

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  3. Thank you everyone for your comments! This post had been languishing in my drafts for months, but I finally got it done!

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