A confession to make: I still have trouble with a lot of basic daily living activities.
No, it’s not that I can’t do them. I’ve proven without a doubt that I can, having lived in my own apartment for several years. It’s just that they’re significantly more stressful and overwhelming than they are for your average neurotypical person.
Take getting groceries, for instance. For most people, the steps are basically: Drive to the grocery store. Take as long as you need to get groceries. Get them. Cart them back out to the car. Drive home, and get them back out.
For me, it’s more like: Take sufficient downtime to make sure that I can process things when I actually get to the grocery store. Wait for bus. Keep waiting, because it’s invariably running late. Catch bus when it arrives. Hurry to get groceries before the next bus arrives, as there’s only one per hour, and the routes in either direction are staggered. Also hurry because the fluorescent lights and noises are overloading. Buy the groceries, making sure not to buy more than you can carry in one trip. Keep waiting at the bus stop, because it’s invariably running late in that direction as well. Ride the bus back, then cross the street back to the apartment with a bunch of heavy bags in tow.
Is it any surprise I need even more downtime after all that?
Similar issues hold for things like cleaning sinks, between the smell of the cleaning solution and tactile issues (I’ve found that I can’t clean at all without wearing gloves, and even then, stuff often ends up getting under the gloves). Or cooking—I need so much downtime to prepare, and need such a clear head to actually do the cooking, that after a busy day, I’d rather just microwave, eat something raw, or go out to eat. And let’s not even get started on laundry—washing and drying isn’t much of an issue, but I usually just leave my clothes wrinkly because ironing is so stressful, especially with my coordination problems.
In short: because it takes me so long to handle these daily living activities, and because they’re so stressful as to require more downtime, I end up getting less actual work done as a result. And my life would be greatly eased by services or accommodations to make these activities less stressful.
But that’s exactly the problem: that I can do these things. Assuming I even could get services to help out with such issues (which is already in question, since I’m over 21, “high-functioning”, and have an above-average IQ—but that’s something for another blog post entirely), the request might still be denied, since I’m obviously able to do the things I’m asking for help for. Completely ignoring, of course, how much more difficult they are for me than for an average non-autistic person—clearly I can do them, so I don’t need even the slightest bit of help, right?
(Oh, yeah, and in further irony, accessing a lot of these support services in the first place requires making a phone call. Yeah, immediate barrier right there for some people with disabilities, myself included!)
This is closely related to what several bloggers observed on Blogging Against Disablism Day, including Jennifer Fitz and Anne at The Trick Is To Keep Reading. The whole support system is designed with the assumption that because you can do something, you’re consistently able to do it, and it’s no harder for you than for anyone else who can do it. And if you reveal that you need support for something, but it’s later discovered that you can do it—no matter what difficulty is involved!—you’ll end up being called a faker.
(I actually have a bit of personal experience with this phenomenon myself. I can’t hear on the phone very well, but can communicate face-to-face without much issue because the sound is clearer and because I can fall back on reading lips. Suffice it to say: people get very confused when someone who called them via TTY relay can carry on a face-to-face conversation perfectly fine.)
And so, despite the fact that such services would make my life significantly easier and less stressful? I’m left to basically handle these things on my own. Yes, I can get help from friends and family—but that hardly solves the issue when they may not always be around to help. This, too, is an issue I’ve encountered many times; on several occasions, I’ve made plans with a friend to run errands together, which ended up not coming to fruition due to illness or schedule conflicts. (And of course, by the time I’ve found this out, there are often no more buses I can catch to run those errands.)
If I had to go through all that to get groceries, I’d be more than exhausted. You have so many barriers to “ease” that I’d never considered, never HAD to consider. I just take those things for granted.
What you need is help. Able-bodied, moneyed people take for granted those things. And help usually comes at a cost, whether it’s money, or independence or self-respect (ie, having to “ask” for help, also means the helper has the freedom to deny the help for reasons that may not take into account the real needs of the helpee. The helper makes the decision…the helpee has to live with it.)
I don’t mean to be intrusive. I just tried to see things from your perspective. You can be proud of yourself, for what you have accomplished. Anyone in your shoes would be tired.
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@Rose: That’s the thing– I’ve been desperately trying to find help from a good variety of sources. It’s just that none of them have worked out very well.
I’d take a taxi if they weren’t over $20 dollars for a round trip. On a graduate student’s budget? That’s quite costly. (And then there’s the phone phobia on top of that, which also doesn’t help matters.)
I’ve tried to get rides from friends, but there’s the whole problem that I mentioned at the end of the post if schedules conflict or if the friend backs out. That, and I just don’t have a lot of friends who can drive!
The interesting thing here is that if I were living in a different environment, some of these problems would be non-issues. If there were a grocery store that were in easy walking distance on a road that’s actually pedestrian-friendly, the only thing I’d have to still deal with is the weight of the groceries and the sensory overload– and both of those could be managed by making lots of smaller trips instead of one big one. (That, and I could do it on the weekend!)
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I currently can walk to the grocery store. It’s about 2 miles. It’s pretty much great. Some of the long time residents here appear to have their own carts so they can wheel things back to where they live, there are lots of people here who can’t afford cars even though the public transportation system isn’t great.
It’s still a huge endeavor to do it, though. If I couldn’t relegate it to a slow day on the weekend I would simply not have food many days.
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I do not find your difficulties at all remarkable. I’ve also found that, should I decide NOT to take the bus, the roads are all ripped up with detours, theres a fire with a bazillion trucks and sirens… at the store there’s always a flourescent light fixtures on the fritz, while I’m stuck in line, and the muzak is literally making me sick… for the longest time we did not eat chicken because I refused to touch the raw meat, etc.
I do not have a diagnosis, just get annoyed. Stay out of stores on the weekend, unless you have a 24-hour and can go at, like, 1:30 am.
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I can empathize with your situation and often wonder if my son will experience such difficulties as he grows into adulthood. He is now 11 and is diagnosed with PDD-NOS, which means no benefits or treatment other than meds.
Have you considered ordering your groceries online? Many stores now have this service. I think also there are online stores that offer grocery items. Shipping will be a cost. But for me, it would be worth double the savings in my sanity!
Maybe there would be someone at the store who could help you out? Sometimes just connecting with the manager will help. I know that may be an obstacle for you as well, but perhaps with time and setting small goals to achieve that result would be helpful.
Thanks for sharing your story!
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@Edna: There are no grocery stores in my area that offer delivery— trust me, I looked!
I could get non-perishables via something like Schwan or Amazon, but that still leaves the problem of fresh foods like fruit, meat and milk.
Hadn’t thought of contacting the manager of the store, but I don’t exactly know what the manager would be able to do for me in that respect anyway.
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I don’t know how “normal” people feel when faced with similar challenges. But overwhelmed is a perfectly OK thing to feel. For various reasons, I also get thoroughly overwhelmed by things that other people take for granted, and just can’t get as much done in a day as others seem to. The question isn’t “what’s normal?” but “what can I do about it?”
It sounds like you’ve done a lot already. Asking for help is huge. Can you get an apartment that’s closer to shopping, etc? Do you have a friend who will pick up a few things for you if you give them your list (I once found myself in a situation where it was virtually impossible to get to the grocery store, No-one wanted to help get me there, but a few people were happy to pick up a few items for me) Can you get a bike with a good basket/trailer/backpack to give you a little more control over the timing of your shopping excursions?
Of course, I don’t know the solution to your problem. I just want to encourage you that it’s OK to be overwhelmed, to need help, and to have difficulties with things that other people don’t seem to think about. It sounds like you are doing so many great things for yourself already – I hope that you find, not only solutions to these sorts of obstacles, but also confidence to accept and conquer them without a trace of self-doubt or apology!
Now go take a rest, man! You deserve it!
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For the apartment, this was one of the cheapest I could get–and one of the few ones I could get where campus was readily accessible. The other options would’ve had the same issue for getting to my daily classes.
Friends… well, see the last sentence of the post, because the same thing applies there. I don’t have that many friends to begin with, and most of the ones I do have are in the same quandary!
And my proprioception is bad enough that I still can’t ride a bike safely. An adult trike, maybe– I’ve actually considered that, but then I’d have to ride in traffic amongst drivers who are utterly clueless when it comes to sharing the road. Half the roads around here don’t even have dedicated bike lanes.
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That’s rough. Like I said, I don’t know the solution to your problem. Just the same, I hope you are encouraged to hear that you’re on the right track and you’re not alone. I just wanted to let you know that a lot of people struggle with these sorts of things, and it’s hard to find help from people who just don’t get it. And I wanted you to know that I’m cheering for you. (And I agree with you about riding a bike in traffic. I’m not brave (or stupid) enough for that either.) Hope it works out for you…
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That really sucks that there are no delivery options at all where you live and that the transit is so sketchy. The grocery store I regularly ordered from recently ceased its online shopping service (frowny face), but there are other options for me like CSA delivery and personal grocery shopping services, plus another less preferred store that still delivers, and I do have a Trader Joe’s within walking distance; sometimes I take the “bubbe cart” over there and load up and bring it back. And yeah, I’ll often go somewhere on transit and cab it back; it’s not cheap, to be sure, but owning a car is way more expensive, even a cheap car. (I used to drive, and to say I had bad car karma is putting it mildly.)
Also, there are smaller stores where they know me and I can prepay for stuff with plastic, and then send a cab over to pick it up for me. I do this with the store that sells my cats’ special food. But damn, I’m spoiled here.
Really, people like us should qualify for disabled transport, if basic things like grocery stores are not accessible to us; too bad we have to jump through flaming hoops for that, too. And I think most “normals” would find the sort of shopping routine you describe as plenty exhausting.
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@Meowser: I actually was able to sign up for paratransit because of a complete lack of service within a mile of my apartment on weekends… but I only ever actually used it on a couple occasions.
The reason for this is twofold:
#1: Booking a trip needs to be done several days in advance. With my executive functioning issues, that’s bad enough as it is. But my weird sense of time also doesn’t help matters; it’s necessary to know when you’ll be available to leave the apartment, and also estimate when you’ll be done with shopping to get a ride back. Worse yet, if something like a mandatory guest lecture ends up being announced between the time you’ve made the appointment and the time of the trip… you’re just out of luck.
#2: Booking a trip requires making a phone call. Yes, at least the transit center actually knows how to answer a relay call (unlike certain other people I’ve had to do business with!)… but it still introduces the issue of there being a middleman who might mishear or miscommunicate something. And with my issues hearing people on the phone, I’d be none the wiser even on a voice-carryover call. (“Wait, why didn’t you show up when we came at 9:50 this morning?” “I thought the appointment was for 5:15…”)
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I know I can’t help you out, Cody, you live in a different city. What I am wondering is…how would I become aware of say…one person I could help out where I live, without becoming a part of “the system”, if you know what I mean.
I wouldn’t want to promise to assist much more than one person. I’m kind of a ditz.
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I’m thinking of an Independent Living thingy I was asked to join once. (I found a kid who lived with CP as an adult. I wanted him to come to my class to talk to a student who had even more severe cp than him. If it was run by consumers (gotta love that word) like the one in Columbia, SC was, it might be a good bet.)
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Codeman, you could technically buy canned fruits via amazon too. Obviously this is less than ideal for lots of reasons (price, nutrient loss, etc) but it’s still an option. Also, you don’t strictly NEED meat and milk. Basically the only thing that’s only in animal products is vitamin B12- technically it comes from bacteria, though. I take a multivitamin pill that has vitamin B12 in it. If you go this route you will need nuts or possibly something like avocados for the fat, though. The “animal products are necessary for protein” thing is pretty much a myth by the way, if you get enough to eat and aren’t just eating heavily processed food you generally get enough protein no matter what you eat. Plus cutting back or out on the meat means more foods you don’t have to cook, I cook very little currently and it’s usually confined to boiling water if I do anything.
I’ve seen nonautistic people say they want to eat better and want suggestions, and then they completely blow off the things I have to do to as being “below them” or something like that. This confused me at first because I tend to assume that if people aren’t doing something that would be good for them it’s because they’re having problems with something, even if they can’t communicate what those problems are. However, after being insulted repeatedly I’m now concluding that some people really are lazy after all.
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Thinking more- you could actually get canned meat too, like vienna sausage or spam. This stuff is ALSO already cooked. So if it was necessary one could live entirely off canned food (canned fruit, canned vegetables, canned meat, nuts) + grains. I’m not sure that would actually be a good idea but it could be stored for times when one’s food supply would otherwise have run out.
Also, to clarify I don’t think in my last message the first and second paragraphs were actually related. Sorry about that.
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Some people actually do need animal products for various reasons: Cost, very specific nutrients that aren’t considered necessary for most people, and things we can’t even figure out the reason for. (We just know how sick we get without it.) I have a muscle disorder that becomes much more severe without meat for some reason. I actually don’t like meat that much and could easily become vegetarian by accident just from forgetting to eat meat. But I have to force myself. I have someone to shop for me but I actually pay a little extra and get frozen chicken breasts from Schwann’s. Because inconsistent meat makes me gag and Schwann’s is as consistent as it gets. If it weren’t for how my health gets without meat (even with B12) I’d be eating only tofu and mock duck and fake pepperoni and beans and stuff. (I do eat a ton of mock duck even as it is, substituted for chicken in chicken paprikash.)
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