I have a confession to make.
I couldn't shower myself until I was sixteen.
I wasn't completely independent with teeth-brushing until I was somewhere around fourteen.
I never did my own laundry until I had to, my first weekend being away at college.
I never cut cheese off a brick until last summer, when I was twenty.
I was never taught "life skills". Because I am not intellectually disabled or "severely" autistic (in fact, my disability is cerebral palsy; though I do consider myself neurodiverse and there are some lesser known effects of the CP brain damage that mimic effects of autism), I was not in "life skills" classes in school. In fact, I was in advanced and AP classes, and all the special ed staff at my school waved off my difficulties with a "Cara's so smart - she'll do fine!" It seemed like every IEP meeting always dissolved into everyone praising my intelligence.
Why is lower intelligence always associated with difficulty with life skills? On the flip side, why is intelligence considered a trump card over all other difficulties?
I often feel younger than my peers precisely for this reason. Most twenty one year olds know how to cook without using a microwave. They can drive, even if they choose not to. They have normal summer jobs like working retail or being a supermarket cashier. Looking at others my age, I feel embarrassed, and so very, very young.
No one ever taught me how to do basic life skills. I think it was assumed that because I was "so smart", I would automatically know how to do these things, like all the non-disabled children out there. No one ever took into account that my physical difficulties would mean doing these things differently. No one attempted to try to adapt these things - not even the physical and occupational therapists that pulled me out of classes three times a week.
It was my mother, bless her heart, that started to realize around the time I became a teenager that if I was ever going to go to college and become an independent adult, I would have to learn how to do things. She put her wonderful, creative, research-oriented mind that I inherited from her to work and found out about adaptive nail clippers, shower chairs, long handled hair scrubbers. She pushed me to learn to do things on my own, some with adaptive equipment, some without.
She filled in the blanks that the school left out. But she shouldn't have had to, and not everyone has that family support. Life skills training should be a part of every school curriculum for students with disabilities - no matter how "smart" they may seem. I am tired of the oxymoron that shouldn't exist. Intelligence and life skills are not - and should not - be mutually exclusive.
Cara Liebowitz - a.k.a Spaz Girl
http://www.thatcrazycrippledchick.blogspot.com
Ohh, this is familiar.
ReplyDeleteAnd you are right, not everyone has a support system at home that promotes these things.
My mom was more than happy to use this "sudden" discovery to pull the plug on my entire life.
http://apanthropy.wordpress.com/2012/05/17/quick-thoughst-adventures-in-housecleaning-3/
Additionally, I didn't really 'understand' laundry until my twenties, though I was walked through it on a teen tour when I was sixteen, I'd never been taught how to clean a bathroom (Google, yay).
DeleteI have never had a driver's license. I've had some terrifying experiences with permits, but never a license. It's amazing what people think of you when you announce that you don't drive, but you don't have something like epilepsy to 'explain' it to others (it suddenly becomes everyone's business).
I don't drive either. I used to be able to, but I would have to leave an hour early so that I could meltdown and recover in the parking lot before I could go into work/store/etc. I got a ticket and my license was suspended and it was the biggest blessing in disguise ever. I really wish more people understood that this isn't a choice I make because I'm lazy or that I want people to do stuff for me. Only recently, have I started to accept this and not feel guilty about it. Other people, unfortunately, are not always as understanding.
DeleteI'm considering driving at this point because of a slew of things beyond my control. The driving would be minor - grocery store and home, that kind of thing. I'm now living in a situation where people are often unavailable or unwell, and my only other option is to hop a cow and ride into town...
DeleteDoes this mean that my 13 year old will start brushing his teeth next year? I can't imagine a house that doesn't have lists attached to every surface, detailing the required steps for major activities (like brushing teeth!). As a parent of four kids, all of whom need direct instructions for life, (and only two have "disabilities")I've become convinced that all kids need this. Oh, and about not being able to cook or such things at 21--most people can't do much without a microwave! I lived at home till I was 23, partly because I knew I needed to learn a lot more before I could do everything on my own. Nothing to be embarrassed about!
DeleteWell, the key is that other people are able to learn in direct ways with things like cooking. Trial and error for me was a terrifying prospect and I got confused easily. Since we learn differently, being left to 'figure it out' the way most of my peers seemed to was impossible. Often I'd be told to "just try" because people didn't realize how agonizing that is for me.
DeleteThe, "Well everyone has that problem!" line of thinking doesn't function here when you stop to consider that it's easier for other people to *solve* that problem. My peers most certainly did NOT go through the things I went through in order to learn those skills.
DeleteLast comment on the subject: I also didn't have a mom who was interested in teaching me things even in the simple way you might for a non-autistic person. I had nothing vaguely resembling what you have around your house, and many of us adults don't have a fairy that shows up and posts those in every room and then teaches me with the best possible methods for my learning style how to use them.
Delete@Shannonhart, above....
DeleteI will be posting, eventually, in great detail about my home organization/get shit done protocols.
I have lists, schedules, reminders everywhere.
I'm 30.
Shannonhart: "Does this mean that my 13 year old will start brushing his teeth next year?"
DeleteWell, it might. Sudden/unpredictable skill appearance, or seemingly sudden ability to tolerate something that was intolerable before, is a thing that happens.
apanthropy: "I'd never been taught how to clean a bathroom (Google, yay)."
Wait, people get taught how to clean bathrooms?
?!
Apparently some do. I had no idea what I was supposed to do or how I was supposed to do it or what I was supposed to do it with. Since I'd been in many bathrooms in varying states of clean, clearly someone is either being taught, or is able to 'figure it out' in a way that I wasn't, as Google is a relatively new Thing.
DeleteI'm in my fifties and still have trouble with executive function stuff.
ReplyDeleteThank you.
ReplyDeleteAs the mother of a son who professionals look at an only tell me what he can't do, from the bottom of my heart, thank you. Beautifully written
ReplyDeleteCara, thank you *so* much for joining this. Please feel free to hang out wherever I am any time forever.
ReplyDeletei learned to drive at 21. i'm so "high functioning" that nobody even figured out i was autistic (including equally aspergial parents, one of whom was a special ed teacher) until i was half way through grad school.
ReplyDeletei was also afraid of showers until college.
there's house stuff i still haven't figured out and i've been married for 8yrs and we've been living in our own place for 6.
Very true - intelligence does not equal social skills.
ReplyDeleteI was 24 when I finally got a driver's license, after trying, off and on, to learn since I was 15. Learning to drive was the hardest thing I have ever done.
ReplyDeleteI'm too old to have had a childhood Asperger's diagnosis and took a lot of shaming because I was so intelligent yet years behind at learning to tie shoes, read an analog clock (or rather, look at an analog clock and produce the words to tell someone what time it is, a problem I still have at times) ride a bike, not have meltdowns in school.
Trying to reply coherently but flashing back to a very bad time in my son's life...all I'll say is the school psychologist told my recently hospitalized, depressed, recently diagnosed ASD son that kids with half his IQ didn't have the trouble with some things that he did, so he obviously just needed to try. Some people really need to be taught some social skills....
ReplyDeleteAs a PT (though not in pediatrics) I'm sorry to hear that you didn't get the help you needed for practical living in your therapy sessions. I think that the PT/OT professions are improving in prioritizing this, but will mention your experience (keeping you anonymous) to my colleagues just as a reminder. Thank you for sharing.
Glad to see this post and a collective of posts here.
ReplyDeleteI'm 43 and grew up before there was an Asperger's diagnosis. I heard variations on "you're too smart to have problems," and "if you're not getting it, you must be lazy," all my young life. So many people assume a simplified view of either being completely incapable or completely capable. Asking them to treat you as an individual with strengths and weaknesses seems to be too much trouble for most people.
ReplyDeleteJohn Mark McDonald
Scintor@aol.com
I'm 56 and just now starting to figure out how to get as much done as I want--it takes way too many spoons to keep a perfect house and I don't care. All those things that people seem to do without much effort are horribly difficult for me. I was too smart for problems, yeah, so I must just be lazy and not trying hard enough.
ReplyDelete"Looking at others my age, I feel embarrassed, and so very, very young."
ReplyDeleteI have this same problem at college right now. I feel like I am the only student who has never worked a paying job, nor knows how to drive. It is especially embarrassing when my parents are paying for one of the more expensive apartments, even though my full tuition and textbooks have been covered through financial assistance.
In the end, I realize that I should be grateful that I am getting this suport so that I do not have to deal with the problems many NT students have to. But I wanted to at least try working so that I could begin to feel more independent and womanly. Yet this college town is extremely competitive both in academic rigor and its workforce; thus, it has been merely impossible for an isolated person to get a job. Not only that, my grades are less than stellar, and I fear I will be turned down from grad schools.
Because the school has a high reputation, even people with disabilities are expected to pull themselves up by their bootstraps. It has been very rough for me to adjust without any close friends to look out for me. Getting private tutors is expensive, yet using the school resources requires me to have a lot of spoons and be willing wait through long lines. And there are ZERO programs geared to reach out specifically to autistic students, for either academic or social issues. A woman tried to set one up, but because of low attendance (3-5 students), she took the cowardly move to shut it down just a year later! That made me angry, because this campus direly needs one, even if it is not going to get immediate use. She did not seem to take into account the time it was going to take, when many autistic students are still afraid to get help (for understandable reasons).
Oh, yes, this!
ReplyDeleteAnd this is also where (in North America, at least) the IQ Less Than Or Equal To 70 problem comes in. People assume that if your IQ is over 70, of course you don't need services - or at least, services that are paid for. You are of average or above average intelligence, therefore you can do it! (Whatever "it" happens to be. For me, it's keeping myself and my environment clean, remembering to eat three meals a day - because I perseverate, and get hyperfocused in my passions, and lose all sense of time - and stuff like that.)
(Thank goodness Ontario has finally removed that restriction - I'm just hoping the rest of Canada's provinces and territories follow their lead *soon*.)
Like most of you commenting here, I was "diagnosed" as Gifted as a child. High intelligence, a gift for languages and math, a passion for science... and no ability to make or keep friends, or understand why I preferred the company of those younger than me, or why I couldn't play sports, etc. I was at least able to explain my dislike for social situations and my preference for being alone by "I'm an introvert" - which is true - which at least let me figure out reasonably early on that *that* was nothing to be ashamed of.
And yet... I couldn't clean my room. My parents regularly described it as "a fire hazard" - because I usually had books and printouts scattered all over the floor and in nooks and crannies, and the closet, not to mention the bookcases themselves. I learned to drive just fine - but couldn't pass the driving test, no matter how relaxed I tried to make myself beforehand. (I finally passed the test here in NL in October of 2012, at 36. After my official diagnosis, and thanks to a driving instructor who was experienced in dealing with and advocating for autistics.)
I can't cope with my own money - I have an unfortunate tendency to be impulsive with it, or to see but not *comprehend* the consequences of spending this much money when it might be needed for bills later in the month, etc. To the point where my mother is now a co-signer on my bank accounts, so she can monitor them. I'm 38. People (including my mother) have tried to teach me to budget. I understand the concepts. I just haven't been able to figure out how to apply them so that they *work* for me. Major Executive Function Fail.
We got really, *really* lucky; I was referred to a man who runs a program here in St. John's called "Pleasant Manor". The program is all about teaching those who have mental difficulties but who likely *could* live independently with support, how to learn and deal with those life skills. We cover shopping (on a budget), cooking, cleaning, etc. Some of that I know, some I know but haven't been able to apply, and some I don't know. One of the things I've mentioned I need serious assistance with is dealing with my finances. At the moment we're between life skills instructors, but the one we had for the last month and a bit gave myself and my housemates a solid foundation in cleaning and compromising with housemates, and cooking as well (for my housemates).
As well, although I *knew* how to cook (when I was in my early to mid-twenties and living with my parents, the choices were: school, work, or take care of the house - including making dinner - while the parents are working. I couldn't deal with university or college - had already effectively failed out of two - and I couldn't find a job that I could deal with. So I took care of the house), when I lived on my own, I ate microwavable meals. My parents have been working on changing this since I moved to NL (to live with them), but it's been hard work.
So no, you're definitely not alone.
{Hugs All with Deep Pressure}
:) tagAught