This Is Really Hard. For Me.

From DiaryofaMom Facebook: “One of my favorite conversations at the event last night was between an autistic friend of mine and the state representative who was one of my fellow dancers. She told him that as a lawmaker, he really should end daylight savings time because it’s no more than a mindf*%ck for autistic people. ‪#‎Truth

First of all – I did not make up the ‘daylight savings time is a cruel mindfuck for autistic people’.  I got the phrase from the wonderful Rebecca of the blog Fosterhood, and the exact post is here: http://fosterhood.tumblr.com/post/44786296305/someone-at-work-just-asked-whens-the-big-day

And she deserves credit.

So, anyway, Jess posted that I repeated that anecdote to a politician last night (true, I did, but after I’d educated him about other, actually-important bills going up this political cycle) and a number of people replied saying variations of, ‘Yes, it is, I hate it too,’ and ‘I feel the same way’ and ‘children/dogs/babies hate it too’.

Which brings me to the point I’d like to make.

When autistic people say “this is really hard for me, this is really hard for autistic people,” the correct response is not “this is really hard for non-autistics too.”

I understand that you are trying to be empathetic as well as sympathetic, but in fact, it does not come across that way to me.  If you will please bear with me, I will tell you why.

You see, I have heard various iterations of this many, many times.  A parent of an autistic kid says their kid is a picky eater, and another parent of a neuro-typical kid chimes in, mine is too!  An autistic adult says a sound is bothering them, and others are quick to note how annoying the sound is.  I say I am having a hard time doing X, and others say how very difficult X is for them, too.

Here’s the thing: if X is hard for both of us, then why do you deal with it so much better than me?  And why does that make me feel so bad?

Daylight savings time throws my entire body out of whack for a good two weeks.  I feel jumpy, off-kilter, impatient.  My body gets hungry and tired at times that do not align with the clocks.  I, who live my life by routines which I love dearly, have my routines all happening, but they are all wrong, in some undefinable way.  I rely on schedules because so much of my life is unpredictable, so much of my life is beyond my control.  Daylight savings time is yet another thing that is beyond my control.  When you add it on top of the stress that I deal with on a daily basis, it can and does send me over the edge.

I had a meltdown today.  A full-on, crying, screaming, swearing, exhaustive meltdown, the kind that adult autistics don’t like to talk about because it is so damn embarrassing that at my age, I’m still having meltdowns. And while no, I do not think that DST was the direct cause of my meltdown, that would be the fault of the Other Stuff that happened this morning, I do think that the time change contributed to it in that I was out of sorts before I woke up this morning.  They – whoever ‘They’ are – stole my hour last night, and that is really, really fucking hard for me.  And unless you are also autistic, I’m sorry, but no, you do not know just how I feel.  You do not know what it is like to live, day in and day out, with the stress and sensory overload and whacked-out neurology and ableism everywhere I turn.

The horrible thing is, spending time in autistic community, with Jess and others like her who are so warm and welcoming and who honestly wouldn’t give a fuck if I cried or startled or whatever – it spoils me.  It spoils me for every day life, because there is such radical acceptance there – there was such radical acceptance last night – that to wake up this morning and go out and face the world and hear the world say Your Need Is Not Important – well, it just makes it harder than ever.  The more time I spend in the autistic community, the less patience I have for the everyday world, but the fact is that I have to live in the everyday world and, unlike Diary’s readers, they really don’t tend to care.

But – and I’m trusting Jess here, ‘cause I do not know Diary’s readers all that well – I’m assuming you care here.  That if you saw a guy with a broken leg trying to navigate a long staircase, you would not say, ‘yeah, I hate it when the elevator’s broken, too,’ because it is not the same degree. So the next time somebody on the spectrum says, ‘this is really hard for me’ try simply agreeing with them.  Acknowledge the struggles that they and I face.  Let them vent, excuse their behavior, offer them chocolate, offer them tea*.  Just don’t – please don’t – say that you know how I feel.

Please note: I am referring here to instances in which I, or someone else, says, ‘this specific thing is hard for me because I am autistic’, not all instances of things which are hard for me and hard for everyone regardless of their disability.  There are, after all, certain universal frustrations that we all share: traffic, snow, projectile vomiting toddlers.  When a certain kid I take care of began throwing up all over herself and the living room a few weeks ago, it was disgusting and horrible and I felt terrible for her, but those feelings had nothing to do with my autism and everything to do with see above: vomiting toddler.

,

Also, this is why when we say #BlackLivesMatter we shoudln’t say #AllLivesMatter.  Because the fact is, of course they do, but society makes it significantly harder and less safe to live as a black person than as a white person, just as society makes it harder to live as an autistic person.

*Please don’t actually offer me tea.  I hate tea.

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