"God knew you could handle this!" might be the worst
May 13, 2014 12:39 AM   Subscribe

 
Good article - made better for the link to the confessions in the sidebar.
posted by dangerousdan at 12:46 AM on May 13, 2014


I'm not sure what she means by the last one. I see special needs children all the time out with their parents, and I don't think to ask their parents questions about them. i assume they are happy going about their lives.
posted by roomthreeseventeen at 2:58 AM on May 13, 2014 [1 favorite]


I'm not sure what she means by the last one. I see special needs children all the time out with their parents, and I don't think to ask their parents questions about them.

I think what she means is that, in an otherwise average social setting, where you would be making small talk and discussing kids and suchlike, when it becomes apparent that you're talking about someone on the spectrum, you just... stop. Suddenly, that entire human being is an off-limits topic because you don't want to be that "So, I read this one article about autism on HuffPo last month..." person.
posted by Etrigan at 3:48 AM on May 13, 2014 [5 favorites]


Articles like this make me anxious. This one unfortunately reinforces the urge that socially anxious or awkward people (like myself) have to say nothing at all - also on the list of things not to do, lest the parent judge you or roll her eyes inwardly at you. It's not that I'm trying to excuse rudeness, because clearly some of these are just rude regardless, but the tone the article takes is one of shaming people for their ignorance. I myself now feel like I should never ever talk to a parent of an autistic child unless I've done about a thousand hours of research learning all about it so that I can avoid any faux pas that might result in them going aggro on me or something.

I feel like advising people not to be rudely nosy about one's children's medical conditions would be a better path to take, since I think that's really the point here, made very obliquely. There's not really a reason to talk extensively about a child's autism, that I can see, unless you're very good friends with the parent already. I dunno. It's trying to come off as helpful and enlightening, but makes me feel pretty crappy, for whatever reason.

... looking at the article again, though, the blog title "Scary Mommy" perhaps should have tipped me off. I suppose taking it in that context might alter the perception a bit. :X (And those confessions are indeed pretty awesome. And wince-inducing.)
posted by po at 4:04 AM on May 13, 2014 [6 favorites]


Ignore that last one, imho. Nothing to say? Say nothing.
posted by rahnefan at 4:06 AM on May 13, 2014 [5 favorites]


We have a pile of quack articles from family we keep under the bed in case said family members demand some sign we have them.
posted by mobunited at 4:14 AM on May 13, 2014 [1 favorite]


Because my son has problems eating due to texture aversion self-diagnosed folks with ASD have, on multiple occasions, said that it and similar issues that come along for the ride are caused exclusively by parental abuse. And that any treatment for it is also abuse.
posted by mobunited at 4:18 AM on May 13, 2014


Last week my son was repeatedly hit by another kid because the educational assistant thought his time was better spent with kids who could communicate because that would get results. So that happens.
posted by mobunited at 4:21 AM on May 13, 2014


I never know how to react when my son is mocked by other children but he doesn't notice, especially when their parents are right there and not saying anything. I don't think it would be good for either kid or for me to smack the shit out of somebody else's dad in front of them.
posted by mobunited at 4:25 AM on May 13, 2014 [9 favorites]


I suppose my point is that this article is great and all, but being a parent of an autistic kid means being subject to 360 degree assaults on your kid's dignity and your parenting, and not just from total strangers, but people in your communities and supposed support systems. Honestly, some stranger walking up is something I can banish from my mind from short order.

But there are good people too. My son's regular EA (not the asshole I talked about earlier) is amazing. We have great as well as disappointing family. And there are even good strangers. Mostly good.
posted by mobunited at 4:32 AM on May 13, 2014 [2 favorites]


I'm not a parent, but I am a family member, and at this point I think I've heard it all. The genuinely mean-spririted comments are the easiest because those people are pure pieces of shit; the well-intentioned stuff is harder and gets old really fast.

And because I'm not a parent and people who don't know me well aren't going to know my family details, it's a form of passing which allows people to feel free to expose their biases. People who would never use a racial slur and know to put an asterisk after "trans" will happily make retard jokes all day long.
posted by Dip Flash at 4:36 AM on May 13, 2014 [2 favorites]


I suppose my point is that this article is great and all, but being a parent of an autistic kid means being subject to 360 degree assaults on your kid's dignity and your parenting, and not just from total strangers, but people in your communities and supposed support systems.

That's the point.
posted by MartinWisse at 4:38 AM on May 13, 2014 [1 favorite]


The "what not to say" approach is settling for politeness because you've given up on ever getting empathy. I don't know how I feel about being surrounded by others thinking the things they now know better than to say.
posted by Obscure Reference at 4:45 AM on May 13, 2014 [3 favorites]


That's the point.

Maybe, but this article is fish in a barrel Awareness Raising stuff. That's nice, but it doesn't really get into the fact that some of this stuff is coming from family, people who interact with your kid on a professional basis, and honestly, even people within the community of autistics and family members.

People want it to be about A Few Simple Rules, as if you can be made a better person through some superficial regulation of what you say. But it isn't. It's about the fact that you realize that buried within the collective unconscious is an attitude that your children are *weak*, and that you are *weak* for supporting them, that they should in some sense be erased from the world. The most surprising people--even people who believe they're there to support you--slip into this mode.

I can live with goofy remarks about God. They're dumb, I wince, I move on. The quackery is a pain in the ass, but it's just not going to happen. It's attitudes that constitute a real threat to my family's well-being that make me take notice.
posted by mobunited at 4:53 AM on May 13, 2014 [4 favorites]


Articles like this make me anxious. This one unfortunately reinforces the urge that socially anxious or awkward people (like myself) have to say nothing at all - also on the list of things not to do, lest the parent judge you or roll her eyes inwardly at you.
I actually feel exactly the opposite way. Thinking about saying the wrong thing makes me anxious. I already know there's the potential to say something wrong and hurtful, so articles like this give me a chance to think about what I shouldn't say and rehearse some things that I should say, and that makes me feel a little less anxious when the situation arises.

I also think it's important to remember that this is not about you. This is not about the parent judging you and shaming you and rolling their eyes. This is about you *saying something cruel about someone's child.* The way my social anxiety works, I have a much easier time dealing with fear of hurting someone's feelings than fear of making a fool of myself, so when I read something like this, I focus on using this advice to not hurt people's feelings.
posted by ArbitraryAndCapricious at 6:20 AM on May 13, 2014 [3 favorites]


not just from total strangers, but people in your communities and supposed support systems.

Oh my god, THIS. If I'm told by one more ASD parent how "proud" I should be of my son's diagnosis, or how I should just accept him for who he is, I'm going to punch someone.

I accept that he has this diagnosis. I'm not going to be "proud" of it any more than I would be "proud" that he had, say, type 1 diabetes. It's just a thing that is.

And I do accept him for who he is, but that doesn't mean I'm not going to fight every single day for him to ... well, to learn to act in ways that are more socially acceptable. I want him to have a great, successful life. "Oh, he has autism" is a way to marginalize him, not accept him for who he is. It reduces expectations.

So, yeah, my kid has an ASD diagnosis. We don't tell people anymore, because they treat him differently and expect less of him, and I don't want that for him. Because that's not the way it works when you're an adult. Unless you're highly impaired (which he is not) you can't exist in a special low-light, low-sound, low-stim bubble all the time. He needs to develop strategies to live in the world. Expecting the world to adapt to him is asking for trouble.

I understand wanting to make people more aware of what autism is and garner support for more research into the causes (and, perhaps, dare we say, a cure?). And I feel great compassion for the families whose child is nonverbal or who is otherwise never going to be able to live independently. There but for the grace of fate go I. But the vast majority of kids in the US today with an autism diagnosis are not seriously impaired. They will go on to live regular lives, as best they can (just as thousands who are undiagnosed do today). But to say that I need to celebrate it, and force the world to make accommodations for it. No, thanks.
posted by anastasiav at 6:37 AM on May 13, 2014 [2 favorites]


The "what not to say" approach is settling for politeness because you've given up on ever getting empathy. I don't know how I feel about being surrounded by others thinking the things they now know better than to say.

God, it's like we've all become the Deep South.
posted by The 10th Regiment of Foot at 6:41 AM on May 13, 2014


He needs to develop strategies to live in the world. Expecting the world to adapt to him is asking for trouble.

Speaking as someone on the spectrum whose parents also raised me this way, I'd ask parents of ASD children to be very careful about what messages they're inadverently sending while doing so.

I mean, my parents were trying to teach me how to be independent. But that sort of constant 'this is the real world' reinforcement really wore down on me and instilled some nasty habits. It taught me to never ask for accommodation. It taught me to always hide who I was, so that I would have all these barriers up that would render me inable to form any close relationships. It taught me to instinctively avoid any spaces where I would potentially run into any social tension, such that I was constantly starving myself of opportunities and experiences. It taught me to mask my struggles and insecurities, and to let myself be used as a weapon to similarly enforce oppressive norms on the other members of the communities I came to value.

Worst of all, it was always used as a weapon against me whenever I dared complain about my treatment. 'Well, you'll just have to get used to it. It's just how it is in the real world. No one is going to accommodate you.'

I think, for myself, I didn't need my parents to tell me how I needed to change and how wrong I was. The entire world was already telling me so. All I needed was a safe space, for one person, for someone I trusted, to tell me it was okay to be me instead of trying to lay harsh truths on me all the time. Because I didn't need to hear any more harsh truths - my life was already a harsh truth in itself.

My experiences aren't reflective of everyone's for sure, but if I could go back in time and give myself words to articulate, these would be the words I would give to say to my own parents. Because whenever the young me tried, crudely and lacking articulation, the message never got across - I would always be accused of being sheltered, idealistic and naive, for trying to carve out the slightest niche of safety.
posted by Conspire at 6:56 AM on May 13, 2014 [31 favorites]


Conspire I appreciate your perspective. It is one that I've heard from adults with ASD before, but it is good to be reminded. Please be reassured that we're trying to raise a child who feels good about who he is, who has safe spaces, and who is able to advocate for himself. It probably helps that there are now so many kids who need accommodation for one thing or another -- in school, at camp, in sports, everywhere we go -- and the other kids are sort of used to that, and adapt to it.

What I'm railing against, more, is those parents (and parents of neurotically kids do this, too) who want to make the entire world into a safe space for their special snowflake. Instead of giving their kids the tools to either advocate for themselves or cope with things they can't change, they try to force the entire world to change to adapt to their kid. And that's never going to work. Parents who, for example, refuse to send their ASD kid to therapy groups to improve social skills and cues, because "it would change who he is". Parents at my son's school who asked that the school disable the fire alarms because the noise would cause their son to melt down and it would take a couple of days for him to get back on track. (I sympathize with them, but .... just no. For the times when there is a planned drill, there are other ways to accommodate for that. For the times when there is actual a fire -- well, better everyone get the warning and get him used to the idea that "this loud noise is awful, but it means DANGER and here is the correct response" than the alternative.)

If we do this right, we'll end up with a kid who is celebrated for his strengths (and he has many) and who understands where his challenges are and knows how to adapt to them (including asking for accommodation as needed). Of course, we know that no parent does a perfect job, but we have a lot of skilled help, and we think our kid is pretty amazing.
posted by anastasiav at 7:23 AM on May 13, 2014 [4 favorites]


But you're setting up a false dichotomy between yourself and 'those parents'; I'm not fond of the parents who go overboard in their advocacy either, but it's important to look at the values and belief systems that drive their behavior. What these parents model for us is that we are allowed to be loud and proud as an identity; that we are allowed to push back against environments that harm us instead of simply settling into them, and question notions of ableism.

It's tough either way, passing or not, being medical or being social, externalizing your disability as a seperate component or integrating it into your being. And this is where the parents that you speak of fail in their execution - they fail to give the choice to the person owning the disability, and they fail to recognize that their kid is complex enough to occupy both dimensions and oscillate between the two as needed. But - so do the parents who push medicalized models. Who stauchly reject Aspie pride and culture. Who sanitize their words in pathology - 'advocacy', 'IEPs', 'independence', 'accommodation'. They are two sides to the same coin.

So why I call it a false dichotomy is because a stauch rejection of either side of the values espoused locks a person with a disability into a single model of identification. And you've got to be versatile - not just for the sake of presenting for the outside world, but protecting your inner self as well. It is so difficult to constantly identity with a medicalized model that turns your differences in human experience into pathology, strips you of your humanity and self-esteem.
posted by Conspire at 8:01 AM on May 13, 2014 [1 favorite]


Because my son has problems eating due to texture aversion self-diagnosed folks with ASD have, on multiple occasions, said that it and similar issues that come along for the ride are caused exclusively by parental abuse. And that any treatment for it is also abuse.

I've been coping with that picky eating one (not just texture either, also taste) for thirty years although I'm anxiety/OCD not self-diagnosed ASD. It's a bitch of a thing. I don't blame my parents at all. They tried their hardest with what they had but I just couldn't do it. I'm only now starting to force myself into pushing through the mental barriers that stop me.

Good luck with your son. If you have any questions about it from an adult perspective feel free to MeMail me.
posted by Talez at 8:12 AM on May 13, 2014 [1 favorite]


The "what not to say" approach is settling for politeness because you've given up on ever getting empathy. I don't know how I feel about being surrounded by others thinking the things they now know better than to say.

That's a pretty cynical take on good manners. Empathy, like battle courage, is a finite resource; politesse helps take up the slack. Nor can you be certain that the polite person is thinking things they know better than to say.

Myself, I could wish for a whole lot more politeness in this world. "Settling", indeed.
posted by IndigoJones at 8:38 AM on May 13, 2014 [6 favorites]


I have a theory that there's a subset of people who are pathologically neurotypical. Loud, pushy, grabby, and needy. The type of people who will blithely walk into your dimly lit office and flip on the overhead lights without even considering that you had them off intentionally, or who walk into a shared space, turn on a talk radio show, and then start talking to you over it. Who require constant, irrelevant stimulation, and lack social boundaries.

And it is also my theory that people who lean that way tend to be the ones most likely to try to codify their behaviors as socially acceptable. They talk more, they project more, and they tend to go into fields where they set behavioral standards, like teaching, HR, and self-help type things.

When people like that unduly influence social norms, we pathologize the entire autism spectrum, making perfectly reasonable requests that people not steamroll and harass others some sort of 'special accommodation.' And it's often backwards.

If someone has to self-identify as ASD to get some accommodation in order to stop someone from doing something unnecessarily intrusive, it unfairly skews the perspective. It pathologizes totally normal, reasonable human boundaries and communication styles.

We don't classify people as being on the neurotypical spectrum, but that'd make about as much sense as mass pathologizing people on the autism spectrum. There's a huge range of aspects of both of those things--some pathological, and many not--and maybe we should be paying closer attention to people's needs and sensitivities in general without labeling one side as correct and the other as deviant.

In fact, if you search on the term allism, you can find a few sites that flip the script, such as this and this. And a lot of those make about as much sense as what they're satirizing.
posted by ernielundquist at 9:11 AM on May 13, 2014 [13 favorites]


"God knew you could handle this!"

Christ, maybe never, ever say this to anyone ever.
posted by MoxieProxy at 10:45 AM on May 13, 2014 [9 favorites]


If someone has to self-identify as ASD to get some accommodation in order to stop someone from doing something unnecessarily intrusive, it unfairly skews the perspective.

People with this type of functioning are not even on the *same fucking planet* as my child is on in terms of getting things done in their lives safely. If your chief concern is that there might be too much light and talking in the room instead of, say, you would die of thirst or starvation in a room filled with food and water without intervention from another person, your problems are, to me, a variation of Cool Story Bro.
posted by mobunited at 11:01 AM on May 13, 2014


Ignore that last one, imho. Nothing to say? Say nothing.

Except this just ends up awkward (at best). Why not ask a few questions (assuming, of course, the parent has indicated a desire to talk)?

I just hooked up with an old friend whose ten year old was diagnosed with borderline OCD about five years ago. What came out of that conversation was his (the dad's) frustration with his wife over how to deal with it. Her response has been to dive into the "OCD community" and advocate for her son any way she can, but as my friend put it, "She's become way over invested in my kid's situation, maybe even trying to make it sound worse than it is, so she can score political points."

His attitude is very much in line with anastasiav's above ...

Please be reassured that we're trying to raise a child who feels good about who he is, who has safe spaces, and who is able to advocate for himself. [...] What I'm railing against, more, is those parents (and parents of neurotically kids do this, too) who want to make the entire world into a safe space for their special snowflake.

Unfortunately, his wife seems to be who he's really railing against (my friend, not anastasiav). Tough stuff, and again, the best I could do really was ask questions, and listen. Because he certainly wanted to talk.
posted by philip-random at 11:03 AM on May 13, 2014


As a person who is "guilty" of a few things on that list, I feel like I should comment.

A life-long and dear friend of mine suspected, not long after the birth of her second child, that that child might be on the autism spectrum. She and I would talk about this, and I, feeling as though I was acting as a friend, would try to keep her "positive," trying to reassure her that what she thought was the case was, in fact, not the case until she knew for sure.

I think that, to the more ignorant person I was then, it was sort of as though her telling me her child might be autistic was akin to her telling me her child might have cancer. It was a life sentence, a burden she would always have, and the idea of my friend having that burden made me sad. I wanted to help.

Over the coming months and years, her concerns were confirmed that her daughter indeed had what might be considered a severe form of autism. I wouldn't say "her fears were confirmed" because I now think the fears maybe were mine, not hers. It's impossible for me to comprehend what her state of mind was, but I can say with certainty I was afraid, mostly that I would not know how to behave, or would not know what to say, or would not know what to do, and couldn't know what sort of relationship I would have with her daughter. To the first daughter, I was "uncle Justin." What would I be to the second?

Simultaneous to this discovery, she had her third and final child. I happened upon something on the blue about television possibly causing autism. I forwarded it to said friend, and we chatted about it. We had a very real, very frank and honest discussion about how much television they watched and whether or not it might affect their third daughter.

Was I wrong to have forwarded that link, to have had that conversation? Maybe, but I don't think so. She was my friend, and that is the sort of relationship we have. Would I have been out-of-line to forward that link to an acquaintance whom I didn't know half as well? Probably, but maybe not. It depends on context, and it depends on the individuals involved. In my experience, the world does not suffer from too much empathy, but it does suffer from too much hard-line thinking about what is always appropriate and what is always inappropriate without exception, without consideration of circumstances.
posted by tempestuoso at 11:20 AM on May 13, 2014


If your chief concern is that there might be too much light and talking in the room instead of, say, you would die of thirst or starvation in a room filled with food and water without intervention from another person, your problems are, to me, a variation of Cool Story Bro.

Could we maybe not do this here? As someone or other once said, each person's hardest struggle is their hardest struggle. Autistic people who can (sometimes) "pass" as neurotypical have their own real and specific challenges that go way beyond "cool story bro".
posted by Daily Alice at 11:49 AM on May 13, 2014 [10 favorites]


People with this type of functioning are not even on the *same fucking planet* as my child is on in terms of getting things done in their lives safely. If your chief concern is that there might be too much light and talking in the room instead of, say, you would die of thirst or starvation in a room filled with food and water without intervention from another person, your problems are, to me, a variation of Cool Story Bro.

That was my point. That is why the big pathology umbrella is such a crummy model. It lumps together all different aspects and manifestations into one simplistic and wildly inaccurate profile, to the point that the category becomes almost meaningless, especially from a layperson's perspective. The first five items seem to stem from that basic misunderstanding, that there's one thing called autism that needs to always be addressed as a pathology.

Some manifestations do require serious accommodations and extensive treatment. Some autistic people cannot adapt to the point that they can live independently. I've never seen anyone deny that.
posted by ernielundquist at 12:17 PM on May 13, 2014


"God knew you could handle this!"

Yeah, I love that one. Especially since I don't believe in God. Maybe God also knows a way to get my 12 year old Autistic son to stop taking his clothes off all the time and drink something other than Diet 7-UP. If he would impart this knowledge to me I'd even go to church. For a couple weeks at least.
posted by MikeMc at 3:32 PM on May 13, 2014 [1 favorite]


Way worse than saying any of the items from the list above is saying nothing at all.

That's her opinion, but she's speaking for herself. "Most parents[...]" - maybe, maybe not. The fact is, that people react very, very differently. Some are eager to talk about their situation, others prefer it be completely ignored and anything inbetween. And there usually is no way of telling the preferences ahead of time. So sorry, but the safest course of action is to keep your mouth shut and let the other person initiate the conversation, and even then, do a whole lot of respectful and sympathetic listening, and very little talking. In general, I think it's good advice to mind your own business and refrain from opining and spouting off.

I can understand that the objection is that many people find navigating such situations too complicated and stressful, and so they tend to flee and avoid, which can be hurtful and annoying, but these are social skills, and many people are just not going to be very good at it. For them the best advice is still to be friendly and polite and mind their own business.

We had a discussion recently here about asking trans people intrusive questions. There's almost no situation where being friendly, polite and minding your own business is going to lead you astray. Meanwhile there are all sorts of minefields out there. And there are things you should never ever give advice about, or spout opinions on, even if solicited, because the odds are extremely high that things will go disastrously wrong: financial advice, health advice, opinions about significant others and romantic entanglements, child-raising practices and such.
posted by VikingSword at 11:22 PM on May 13, 2014


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