This may just be my experience as an autistic person, but the kids I’ve nannied whose parent’s complain of ‘bad awful in cooperative selfish autistic behavior’ are… Not like that? At all?
Like, for example, I cared for a kid for a while who was nonverbal and didn’t like being touched. Around six years old? Their parent said that they were fussy and had a strict schedule, and that they had problems getting them to eat. Their last few nannies had quit out of frustration.
So, I showed up. And for the first little while, it was awkward. The kid didn’t know me, I didn’t know them, you know how it is. And for the first… Day and a half, maybe? I fucked up a few times.
I changed their diaper and they screamed at me. I put the TV off and they threw things. Not fun, but regular upset kid stuff.
Next time, I figured, hell, I wouldn’t like being manhandled and ordered around either. Who likes being physically lifted out of whatever it is they’re doing and having their pants yanked off? Fucking few, that’s who.
Next time, I go, ‘hey, kiddo. You need a new diaper?’ and check. ‘I’m gonna go grab a new one and get you clean, okay?’ ‘Wanna find a spot to lay down?’ ‘Alright, almost done. Awesome job, thanks buddy’.
I learned stuff about them. They liked a heads up before I did anything disruptive. They didn’t mind that I rattled of about nothing all day. They didn’t like grass or plastic touching their back. They were okay with carpets and towels. They liked pictionary, and the color yellow, and fish crackers, and painting. They didn’t look me in the face (which was never an issue- I hate that too, it fucking sucks) but I never had reason to believe that they were ignoring me.
Once I learned what I was doing wrong, everything was fine. Did they magically “”“become normal”“” and start talking and laughing and hugging? No, but we had fun and had a good time and found a compromise between what I was comfortable with and what they were comfortable with. (For the record, I didn’t magically sailor-moon transform into a socially adept individual, either. In case anyone was wondering.)
I don’t like eye contact. It’s distracting and painful and stresses me out.
They didn’t like eye contact either.
Is eye contact necessary to communication? No. So we just didn’t do it.
Was there ever a situation where I HAD to force them to drop everything and lay down on the lawn? No. So the thirty second warning came into play, and nobody died.
“But they never talked!”
No, they didn’t. And they didn’t know ASL, and they didn’t like being touched.
So you know what happened?
My third day in, they tugged on my shirt. ‘Hey monkey, what’s up?’ I asked. And they tugged me towards the kitchen. ‘oh, cool. You hungry?’. They raised their hands in an ‘up’ gesture. ‘you want up? Cool.’ and I lifted them up. They pointed to the fridge. I opened it. They grabbed a juice box out of the top shelf, and pushed the door closed again. ‘oh sweet, grape is the best. You are an individual of refined taste.’ I put them down and they went back to their room to play Legos.
“But they didn’t say please or thank you!” “But you should be teaching them communication skills!” “But!” Lalalalala.
1. The entire interaction was entirely considerate and polite. I was never made uncomfortable. I was made aware of the problem so that I could help them solve it. There was no mess, no tears, no bruises, no shouting.
2. Did my brain collapse into a thousand million fragments of shattered diamond dust out of sheer incomprehension? No? Then their communication skills were fine. Goal realized, solution found, objective complete. They found the most simple and painless way to communicate the situation and then did it.
Kids are not stupid. AUTISTIC kids are not stupid.
I’m willing to bet real cash money that the real reason the last few nannies had quit had a million times more to do with their own ability to cope, not the kid’s.
To this day, that was the most relaxed and enjoyable job I’ve ever had.
And I know I don’t speak for everyone. All kids are different. All adults are different. But in my time and experience, pretty much 95% of all my difficulties with children come from ME not being understanding enough. Every single “problem child” I’ve worked with turned out to be a pretty cool person once I started figuring out how to put my ego aside and let them set the pace.
Again, not speaking universally, here. I’m just saying. Sometimes social rules are bullshit, you know? People are people
Have you ever read an article about the study that found that teaching the parents to cope with autistic kids yields better results than other therapies? Because this is exactly what they were talking about.
It’s all about adjusting to the needs of the kid you got, and not wrapping the kid around your needs, wants, and expectations.
“Fifty communities from San Francisco to Washington, DC, and as far as Canada and Australia will convene this Thursday to hold vigils of their own and memorialize people with disabilities who’ve been murdered by their caregivers.”
Researchers have found a genetic mutation that links Ehlers-Danlos Syndrome (#EDS), Postural Orthostatic Tachycardia Syndrome (#POTS), and Mast Cell Activation Syndrome (#MCAS) http://ow.ly/2FcO30i8IrR
Free Review Copy For the First Historical Romance with a Disabled Protagonist (Spina Bifida)!
This is the first historical romance from a big publisher with a disabled protagonist! You might remember me talking about the first book in the series – The Importance of Being Scandalous (it’s 99cts atm!), in which Julia, the character with spina bifida, was a side character. It’s a companion series with separate stories, so you don’t need to have read the first book to read this.
Now she’s getting her own book and it’s vital that we support it to show we want diverse books! You can help by talking about the book, reblogging this post – or you might get an early copy if you request one:
for special requests about other involvement (promo etc) email publicist Holly at holly@entangledpublishing.com with details about your social media.
Who qualifies:
Everyone who can leave a review on Goodreads/Amazon/Their Blog. You don’t need to have a book blog.
The release date is January 30th. Reviews posted by then would help the most, but there’s no deadline.
Full blurb:
Jasper De Vere doesn’t do sad. Ever since the death of his parents, he’s devoted himself to life’s many pleasures—while making sure to avoid attachments. It’s difficult to avoid your own grandfather though, especially when you’re the heir to his Dukedom. Unable to sit by and watch one of the few people he cares about wither away, Jasper flees to his friend Nicholas’s country estate.
Julia Bishop leads a life of glorious excitement—in her head. The spinal injury she was born with makes her a permanent pariah in society, so despite being the daughter of an earl, she’s spent her life in the country with just her family to keep her company. When her brother-in-law’s flirtatious—and devilishly handsome—friend mistakes her for an untroubled debutante, Julia isn’t about to let an opportunity for some real, live adventure slip away.
Delicious distraction and flirtation turn into an all-out affair, and slips dangerously close to something more when family intrudes. Can Jasper and Julia return to their separate lives in isolation, or will they take a risk and choose each other?
Okay, can we just pause a moment and watch Shaun “catastrophize” the car accident after Lea let him try driving? This is a real autism nuance that I have NEVER seen portrayed, but it’s one I think almost all autistic people can relate to.
Lea was teaching Shaun how to make the car peel out (burn rubber) and wasn’t specific enough about telling him to take his foot of the gas before taking it off the brakes. So he took his foot off the brake first, drove the car off the road and I think the axle or a tire got messed up because he ran over a big rock.
Lea didn’t react the way Shaun expected. She took the blame for the accident and had to calm him down because he was making a big deal out of it. But why is Shaun reacting this way to something Lea considers minor?
Answer: Autistic people are never allowed to fail the way neurotypicals are.
Neurotypicals are given a shot at something, and if they mess up they get to laugh about it / get a little embarrassed and try again.
Autistic people are given a shot at something, and if we mess up we get lectured / yelled at, the opportunity is taken away from us and we’re told “obviously you can’t do it, so why bother trying again?”
We are kept on a really short leash by the authority figures in our lives. This is especially true of autistic people such as myself who can’t live independently and need some or a lot of help every day. We’re expected to defer to caregivers as authority figures as if we’re not capable of deciding anything for ourselves or being an authority in our own lives without a “go ahead” from someone else. Some of us might need someone else to help us do the thing after we make our decision.
The reactions caregivers give to our decisions may cause us to decide the opposite of what we actually want so we don’t inconvenience them and cause a conflict– and that can feel like not having a real choice at all.
“I want thing A, but they always get mad when I want thing A, so I’ll say I want thing B instead because less social pressure.”
I’ll give a simple scenario to express what I’m talking about here. Assume the autistic person needs assistance getting dressed, and how they express what they’re saying (speech or AAC) is up to your imagination.
One day:
Autistic person: “I want to wear my red hoodie today.” Caregiver: “I haven’t sorted the laundry yet. I’m tired. Why don’t you wear the blue sweatshirt instead?” Autistic person: *Hesitant* Caregiver: *Sighs and looks annoyed* Autistic person: *Stomach gets a tight feeling; this is social pressure. Pushing against social pressure causes conflict. Conflict is painful.* Autistic person: *Conflict discomfort is unbearable, seeks to end it the quickest way possible.* Autistic person: Fine…I’ll wear the blue sweatshirt. Autistic person: *Feels defeated, like their choices don’t matter.*
Another day:
Autistic person: *Wants to wear their red hoodie.* Autistic person: *Remembers the caregiver’s response about the hoodie last time* Autistic person: *Stomach gets tight again.* Autistic person: I’ll wear my blue sweatshirt today. Caregiver: *Looks relieved.* Caregiver: Okay, let’s get you dressed.
Autistic person: *Stomach tightness goes away, but they feel defeated like their choices don’t matter.*
And what about nonverbal autistic people who need lots of daily help and can’t make their communications understood? Many of their meltdowns may be sensory, but I can betcha all the money in every bank on Earth that some of their meltdowns are from feeling like they have no say or control in their own lives. Every decision is made for them, they’re maneuvered through their day, get tugged on if they resist and then they act out explosively (ie aggression, bolting, vocalizing) because that’s the only choice they get to make that is entirely their own.
I think caregivers should present them with choices during the day, even if it’s as simple as what color shirt they wear or if they want oatmeal or a muffin for breakfast. Let them have some say in their lives. They might look at or touch the thing they want if you offer both and say they get too choose.
And hey, if it won’t hurt anything if they act like they want both, let them have both! Who cares if wearing two shirts that don’t go together looks a little silly? Who cares if they want a muffin with their oatmeal? They’re making their own choice. You can still steer them away from choices that would be dangerous while still giving them choices.
Like, don’t present them with any winter clothes in summer, and don’t offer food choices with foods that upset their stomach.
But let them have a chance to choose.
And let them have a chance to try, fail and try again.
Shaun was yelling “I want to make my own decisions!” when he had a meltdown. I wonder how many autistic people who can’t understandably express that thought are having meltdowns for the same reason.
Society teaches autistic people that we should do everything possible to not inconvenience our caregivers, but the cost of that is we feel little to no control over our lives.
The worst failure is not trying.
Let us try.
My sister isn’t autistic, but she has some autistic traits that go along with her other disabilities. This concept is so so important, because although she functions on the level of a 5 year old (she is 28), she is still a human being who has preferences. She is also extremely hard on herself when she feels like she did something incorrectly- I’m teaching her how to play the piano, and alongside that, I’m trying to teach her to be patient with herself.
2 part response!
1: It’s great that you recognize your sister’s frustration and are trying to help her be patient with herself. It sounds like the other people around her make a big deal out of her mistakes instead of noticing when she gets things right.
It’s nice to see someone trying to pick that apart and show her she IS capable.
Part 2: Mental ages are really stigmatizing and ableist. I know you didn’t mean it maliciously and may not realize why mental ages are harmful, so I hope this helps shed light on why.
Mental ages hurt disabled people because we’re treated like we’re the mental age instead of the adults we are. It results in us being treated with less respect, being treated as if we don’t know what we want and we get treated like we don’t know what we’re talking about when we do. It’s a form of infantilizing, and it’s an implication that we’re somehow “less developed” than our peers because baby / child brains are less developed than adult brains. We aren’t less developed, we just developed differently.
Mental ages get used as a shortcut, but it’s so harmful to disabled people just like functioning labels (mild / severe / high functioning / low functioning) hurt autistic people and intellectually disabled people.
Your sister may need things explained to her differently or need extra help that nondisabled 28 year olds don’t need help with, but she is still 28. She hasn’t been 5 since the year between her 5th and 6th birthdays.
I know you had zero malice behind what you said; that’s why I pointed it out so you can avoid it in the future. (Mistakes are how we learn and they help us grow.)
Good luck with your sister and I hope the piano lessons go smoothly! ^_^
huh. Interesting.
This is something I understand about myself, and I think instinctively understand about my twin brother (he is autistic, I am otherwise ND) but I hadn’t ever really thought through the internal process like this before. For either of us, really. I’m almost embarrassed!
I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”
This sounds like praise, but it isn’t.
The time disabled people spend working twice as hard as everyone else has to come from somewhere.
There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.
People need rest. People need leisure time. People have lives and needs and can’t do everything.
Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.
Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.
People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.
It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.
It’s an electric wheelchair that’s controlled by the levers on the sides (so yes, you do need two hands to operate it, just like a manual). It’s only 40 pounds and can be folded down to fit into any trunk. The creators/managers all seem to be wheelchair users. I personally talked to one on the phone who told me the features he uses.
You don’t understand, I’ve been in New York City for almost four months now and it’s been incredible and in that time, I’ve wheeled my manual chair about 300 miles (there are times I’m going up to 40 blocks a day) and I am so sore and so bruised and so tired and it’s going to s n o w soon and even though the city won’t get nearly as much snow as upstate, it’s still not going to be fun, but I’ve always been afraid to get a big, bulky, electric chair because I don’t want to:
A.) Completely give up my autonomy.
B.) Have a 500 pound electric chair run out of power and have to figure out how the heck I’m getting it and me home.
But this chair, this chair, lads…
This chair can get me all the way from my apartment down the island to Times Square and into Amorino for the world’s best waffles/gelato/hot chocolate before it even considers running out of power. And it only takes 3 hours to fully charge AND if for some reason, something happens, it can be folded up and put into any NYC cab and I’m just so, so, excited. NYC is filled with so many hills that I’ll now be able to go up/down without straining myself. I’ll be able to take the M5 down Riverside and still get to the center of the island without heaving and huffing and sweating. I just really, really, hope it all works out!
Note: Absolutely none of this is sponsored. I’m just really excited about this wheelchair. The Amorino part isn’t sponsored either but seriously, you should all go to Amorino at some point in your lives, I should stop going to Amorino because at this point, I go once a week and that is what we call Unhealthy. But I don’t care because life is short and Amorino is good. And so is this wheelchair (hopefully).
Holding the Bowl 