I turned 30 this year. Societally, 30 is when you're supposed to have your life together. That includes your social life as well as your professional life. Since I'm autistic, the social life is the more crippling factor that contributes to the professional life's success or failure. Autism is, after all, a social disability. I simply don't think like most people, and didn't learn to socialize and act the same way most people do.
Autism, then, can make for a difficult time making friends, holding conversations, and managing social expectations. In short, autism can make having a social life very difficult.
When I was a child, a stinging retort some children would throw at each other was, "Oh, get a life!" Now that I'm 30, I started to wonder if I'd succeeded, and what exactly constitutes a social life. A social life, I suppose, is the summary of a person\'s relationships with the people around them and with the general public. So what's a good one look like?
Values
I expect the definition of a good social life varies based on who you ask. Some people value achievement, and connections that advance their careers. Some people value pleasure, and favor people that are entertaining to be around. Others value social change, and make connections with minority groups, politicians, or nonprofit organizations. Still others seek truth and understanding, and look for others that can help shed light on difficult questions. And some value a particular hobby or profession, and seek people within their favored subjects.
I think most people tend to opt for a combination of these and other values, favoring some more strongly than others.
The relationships we seek decide which events we spend our time on. For example, a fancy dinner party for social climbers, a church's Bible study, or a choir or other interest group?
All of my examples so far have been groups you have to leave the house to attend, but you can also attend events virtually. The online computer game I play with my spouse involves the two of us spending a couple hours per week with people from California, Pennsylvania, Louisiana, and other US states. We all meet up at a scheduled time and play a very challenging piece of content in the game together. Personally, I feel this is a legitimate use of my time, but I expect there's at least one person out there that feels that if you\'re not meeting people outside your house, it doesn't count. That theoretical person and I will just have to disagree.
Needs
Then, too, you need to keep in mind how much social interaction you need, and how much you can take. I, like most humans, have a certain level of minimum required social interaction in a week. Less than that level, and I start to get lonely and sad. My depression gets worse, and my anxiety ramps up.
But especially for introverts like myself, I think there's also a maximum level, after which I run out of energy and become unhappy. If I go to events all the time, and fill up my schedule, I start to get crabby and short-tempered. Then that starts leaking out on people that don't deserve it, and that's no good for anyone. Instead, I have to set aside some time in my day to be alone. That includes being away from my spouse, by the way, even though I love him very much. I simply need alone time as part of my self-care.
So a good social life balances your alone time and your social time. You don't run out of energy, but also don't starve yourself for socialization.
It's a bit of a tricky balancing act, and I feel like most people don't really have to think about it. I do, though, and it's not much fun. The idea of limited energy has been posited before by someone much wiser than me. If you're not familiar with Spoon Theory, I strongly suggest you click that link and read the short story that explains it.
Putting it Together
So, perhaps a broad definition of "a good social life" would be "a social life that meets your personal needs and values." Which then begs the question: what are my needs and values?
Personally, I think my need for social interaction is fairly low. I'm fairly heavily introverted, and I spent much of my childhood without proper friends, only interacting with people when necessary. A good book was a much better companion than another person. Nor do I seem to benefit much from having the sound of human voices nearby (such as from a TV or podcast). I've heard of people having those on while they're at home "for company," which struck me as kind of odd. But either way, I'm fairly happy by myself, and rarely suffer the effects of under-socialization.
Over-socialization is a much larger problem for me. I seem to have something like a daily ration of energy, as well as a weekly ration. Exceed either one, and the effects linger. Managing how much socialization is too much is definitely an art, not a science. I can spend hours in my spouse's company and spend very little energy, for example. Or for the same amount of energy, spend 10 minutes with a difficult stranger. So what kind of people I spend time with matters, and what kinds of expectations are put on me also matter. A fancy party where I have to dress up and make polite conversation costs a lot more energy than a small get-together at a friend's house where we'll be watching a favorite TV show and eating takeout.
Values-wise, I seem to currently favor people that are interesting to be around or share similar interests to me, with social change and truth being secondary factors. I should probably be prioritizing my career more highly, but that's exhausting and I tend to run up against my energy limitations. My regular week's events include:
- three "catch up with friends" events,
- one "watch a TV show with friends" event,
- two "exercise with parents" events (one of which inevitably bleeds into lunch and chatting, and why shouldn't it?),one regular church service (where I sometimes run the sound board),
- one Bible study event,
- two regular guild meetups in World of Warcraft to play group content together.
Onto this list, there's also the monthly events, which include attending an autism parent support group, attending my condo association board meetings, and going to hang out with a group of autistic adults and play card games or visit local attractions. (There's also this blog, which is my daily job, and household chores, of course.)In the End
I spent a lot of my late 20s worrying that I wasn't doing a good enough job managing my life, and that I was becoming a shut-in. And indeed, I do spend a lot of time indoors and in front of my computer. But I think, looking at that list, that I'm probably doing okay by way of having a social life. I suspect I spend more time on self-care than most people do, but when the world is so hostile to people like me, self-care is essential. Also, my work and my play are mainly at my computer, so it kind of makes sense.
Hopefully, as I age, I can continue to keep a good balance in my activities and energy levels. Looking at my list, I feel like I should probably add in a weekly autism-related activity of some kind. I'm not really sure what to add, though. The local autism support group doesn't really need clerical help (I already asked), and I don't know what other help I could offer them. I suppose I can ask the next time I see the chair of their board.
Beyond that, I'm not really sure what else to look into. But I expect that's merely because I haven't looked very hard. Guess I should do that.
Autism- and Sensory-Friendly events
https://theoutline.com/post/5175/a-glimpse-into-autism-day-at-six-flags?zd=2&zi=ivnnivap
I\’ve been seeing more and more of these recently: mainstream events designed around, or directly for, people with special needs. In my particular community, there is no nationally-branded amusement park, but both major theater groups (AMC and Celebration) offer sensory-friendly showings of various movies. I\’ve been to one on accident: it was more or less the same as a regular showing, except the lights were on in the theater, there was a kid running up and down the stairs a lot, and it was a bit more socially acceptable to have a quiet conversation with the person next to you.
What made this particular event at Six Flags interesting to me is that they effectively closed their doors to most of the population of the US, in the name of being autism-friendly. The amusement park did, of course, offer accommodations in various places for overstimulated children. Most places do that. Most places, however, don\’t bar the general public from the event. On this one day, Six Flags did exactly that, allowing only autistic children, their families, and specially trained teachers into the park.
The article\’s author notes that the reasoning is quite valid: even one intolerant person is enough to make a whole family feel unwelcome. Making the park only have people that have experience dealing with autism and the difficulties and differences that come with it means there\’s far less of a chance of some judgemental loudmouth asking the parents \”why they can\’t control their child,\” or some similarly thoughtless, useless remark or question.
As a non-parent, I am admittedly not an expert in this area… but it occurs to me that children are literally small humans, and it\’s not exactly possible make any human be a perfect little puppet. Especially if they\’ve got difficulties and differences like mine. Even if they\’re little.
Regardless, such remarks or other hurtful words and actions can really alienate autistic people and their families, so this step, while rather bold, is perhaps not unwarranted. It\’s a single day in their year, as well, so it\’s probable the amusement park\’s profits weren\’t too severely dented. I would be kind of curious to see a count of the attendance that day, though. Amusement park admission isn\’t cheap, and a lot of families with autistic members don\’t have a lot by way of disposable income. From the fliers, it looks like there were sponsored admissions through at least one organization, though.
I\’m not sure what to think of these exclusive events. While I recognize the legitimacy of keeping the general public out so that we can enjoy ourselves without worrying, I\’d hate to see it become a trend. Exclusion negates the possibility of inclusion. We can\’t teach neurotypical people to include us and see us as people if we exclude them from our events.
I doubt it\’ll become that widespread of a trend, though, so I\’m glad these events exist.
Improving the Autistic Future
The transition between high school and adult life is almost inevitably a difficult one for autistic people and their families. The question of college, trade school, or job is a difficult one for neurotypical young adults, and when you mix in autism, it becomes exponentially more complicated.
The assumed pathway, at the time I was growing up, was that you went from high school to college. That was what was expected, and it was what I did. But many autistic people who do this find they are ill-prepared for that transition. A lot of those people return home, feeling like massive failures as people, and like their lives are ruined forever.
Why does this happen? Well… Part of it is that our schools aren\’t teaching us the day-to-day skills necessary for being a functional adult. Things like what laws your country has, how money works, how to vote and register to vote, and how to make a budget. Have a well-made song that covers this subject admirably. I have no idea if the performer here is autistic or neurodiverse in any way, but he\’s absolutely right.
Something he doesn\’t cover, by the way, is the loss of art, music, technical, and theater programs in favor of ever-more academics and sports. Though by the video, I\’d bet he\’d have an earful about it. The point of school is to give you broad base, required and everyday knowledge and introduce you to all sorts of interesting subjects so you can choose for yourself what things you want to study or make a career out of. Removing these programs ensures that the only path forward autistic (and neurotypical) people will see is college.
What\’s the problem with that? Well, not everyone needs or wants to go to college, first and foremost. Continuing your education is excellent, but if you love cars and excel at taking apart and putting together engines and machines, you hardly need to go to 4 year college to find out you\’ll make a great car repair person. The fact is, not all special interests align with a college education, and no one should be forced to shoulder the lifetime of debt that comes with that education.
This is particularly true of people on the spectrum whose opportunities are more limited due to communication difficulties, chronic health problems, intellectual disabilities, and other factors. Just because these people don\’t care to go to a standard 4 year college, or wouldn\’t be able to get through it, doesn\’t mean they can\’t have happy lives. It\’s just that our definition of a happy life may look a lot different than \”high school -> college -> marriage -> house -> kids.\” Deviating from this pattern seems incomprehensible to many parents, but why should it be? Autistic people can have strong interests and derive a lot of joy from them. Why can\’t we have lives based around those? It\’s certainly possible, as this article by one happily surprised parent shows.
I read somewhere that \”the grand essentials for happiness are: something to do, something to love, and something to hope for.\” I think this is probably true, assuming basic needs (food, water, shelter, etc) are met. Maybe a bit simplistic, but it seems accurate enough. Without something to do, you feel like you\’re wasting your life.
A job can fill this criterion, assuming it\’s not actively making your miserable. But it doesn\’t need to be a paying job if that\’s not feasible: volunteer work is also a way to use one\’s efforts, and sadly, it\’s the most accessible work for autistic people. But it can lead to paying work, also. The volunteer may do such a good job, and make it known that they would like to be hired, that the organization chooses to hire them. Volunteer work also lets you learn new skills that you might otherwise not have ever picked up, which can then be applied to other parts of your life, or even other jobs.
The something to love is a bit harder. \”Something\” does not need to be a significant other, or a romantic partner. It can be your family, for example, or a group of friends. It can also be a pet. Support animals are popping up more and more as ADA-sheltered accommodations. The responsibility of supporting an animal can also be good for peoples\’ wellbeing. They\’re a lot less complicated than people, and often much less judgemental. Your cat does not care if you\’re autistic, and your dog loves you regardless of whether you look and act \”normal.\” Other kinds of animals can be helpful in this way, too.
I\’m not sure if I\’d term my childhood pet corn snake as a support animal. I do hear snakes can be affectionate, but I don\’t think mine was. Dogs are much better at being lovable, and cats too, somewhat. I\’ve also heard of pet rats being affectionate, as well as ferrets, hedgehogs, and of course birds (especially parrots and macaws). Any of these animals could serve an autistic person or person with other disabilities well, by providing a friendly, non-judgemental companion for us to talk to and be with.
At least with autism, you can definitely make an argument for the \”something to love\” being a special interest, too. Our passions can be all-consuming, and that can be good. It can lead to a job, or to volunteer work and meeting people. Some parents decide their autistic children\’s passions are distracting them from the demands of life, and work to undermine them and keep their children away from them, in hopes that the interest will fade. This is remarkably shortsighted unless the interest is directly dangerous. It\’s better for everyone if the passion is worked into the demands of life. Schoolwork can be phrased in terms of comic book heroes, and animals or computers or classic books made into jobs (vet tech/animal shelter volunteer, home tech support and repair services, and librarian/library volunteer, respectively).
Something to hope for is naturally the hardest. Peoples\’ goals vary immensely. With the stress of raising an autistic child and running a family, I feel like parents tend to miss or overlook their children\’s goals. Don\’t assume that a person doesn\’t have goals, just because they haven\’t communicated them to you. A goal might be as complicated as, \”I would like to get married, have children, and live in my own home,\” or as simple as, \”I would like some privacy for an hour every day to engage in my hobbies.\” As much as is possible, it should be a priority to help autistic people achieve our goals. Even if those goals don\’t line up with what society (or you personally) prescribe. Perhaps especially if that\’s the case. We are unusual people, destined to lead unusual lives. Help us lead to way for others to do the same.
House-Hunting While Autistic, Part 3: Complications After the Offer
This is the third in a series about my experience of finding a house. (Part 1 is here, Part 2 is here, Part 4 is here) As I\’m autistic, the process proved to be a bit more challenging than it would be for most people. In part 1, I covered why we decided to buy a house and what things we opted to look for, given my disabilities and challenges. Last week in part 2, I described the actual search process, which proved to be both draining and frustrating. This week, I\’ll explain what happened after we put an offer down on a home.
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So there was a bunch of annoying paperwork that went with putting the offer in, but thankfully that can all be done online these days, somehow, and all I really had to do was read a bunch of legalese in .pdf format, then sign at the appropriate places. Reading it was optional, even, but it\’s never a good idea to sign something without reading it…
After we put in the offer, there was the painful waiting period while the other offers went in, were checked over, and a decision was made on which offer to take. Fortunately, our offer was accepted. Had it not been, we would have been back to square one, basically.
Thus far, the process had been exhausting, but relatively straightforward. Now began the back and forth between waiting and flailing frantically. Communication came in bursts, with much waiting between each burst, and much activity directly afterwards.
Complications With the Seller
There was the inspection first. We hired an inspector to do a general inspection, which came back with a few oddities, but no major problems. The sump pump was broken. The garage door will happily crush small children or pets to death. And there were some strange chewmarks on the deck. But that was it. No water damage, all the appliances in working order, etc.
The broken sump pump was of sufficient worry to me to request it be replaced before we moved in, so there was a disagreement with the seller about that… After much back and forth (like, a week\’s worth of back and forth), and after he found out the sump pump was the owner\’s responsibility, he finally paid for a new one. (All of $150, and him receiving literal thousands of dollars on the sale of this home. Ugh.)
Unfortunately, that wasn\’t all. I\’m sensitive to mold, so I had to hire a second inspector to do a proper mold test. No sense moving into a place and then finding out I couldn\’t live in half of it. To my horror, the mold test did come back with toxic black mold spores, which was almost enough for us to call it quits on the entire place. But there hadn\’t been water damage, so we suspected perhaps the sump pump was the problem. But then we had to bargain with the seller for who was paying for any mold remediation costs… which was a mess. I think it took another week or so before we were able to get the seller to agree on splitting the cost. In the meantime, he threatened to back out of the sale, which was extremely frustrating and nerve-wracking to me, given how much time we\’d spent on this place.
The mold cleanup ended up being little more than replacing the sump pump and cleaning the carpets, and the second test came back without any toxic black mold spores, so thankfully I think we dodged most of that bullet. I\’m breathing the basement air at present and don\’t feel hideous or particularly out of sorts, but I guess we\’ll see how the weeks progress.
Prior to those messes, the seller had originally offered us all the furniture save a few pieces in the home. Since it was nice stuff, well matched and coordinated, we were excited and wanted to take him up on it. We offered a reasonable price, specifying particular pieces we really liked. Then there was nothing for half a week. We then heard back that he was going to keep most of what we\’d liked, but did we want anything that wasn\’t already spoken for in the downstairs? We did, and offered an appropriate price for those pieces… only to hear back a couple days later that, \”just kidding, I\’m taking everything but these pieces you didn\’t want, which you can have for a ridiculous price.\” I was pretty annoyed with the seller after that.
The final headache with the seller came after the bank had appraised the home, and they decided the place was worth about $4k less than we\’d offered for it. For some reason, they wouldn\’t redo the appraisal, and so we were stuck figuring out what to do about that last $4k. The options were: pay the $4k up front, negotiate with the seller to lower the purchase price by $4k, or negotiate some kind of compromise. We really didn\’t want to just pony up $4k unless we absolutely had to, as our bank account tends to be below $10k at all times… so we attempted to negotiate. Thankfully, this was near the end of the process, and the seller was willing to split the cost. He dropped the purchase price $2k, and we ponied up the remaining $2k.
The Trainwreck Mortgage Loan Officer
And that was just the issues with the seller. The mortgage loan officer was an entirely different mess, of the type I\’d more call a trainwreck than an anxiety-provoking annoyance.
The wreck actually started after we put in our application for \”preapproval.\” We heard from him briefly, saying he was going to try to finish our application before the end of the week… and then utter silence for basically the whole of the next week, until we emailed… at which point we found out he was on vacation and hadn\’t bothered to tell anyone. Including the realtor who had recommended him to us.
When he got back from his unannounced vacation, we tried to contact him again, and succeeded… only to find out that he\’d somehow lost vital parts of our application… such as how much our income was. Then he couldn\’t seem to keep straight the documents we needed for the various parts of the process. So things like taxes, driver\’s licenses, etc. He kept asking for a document that didn\’t exist, and he should have known didn\’t exist if he\’d read the documents we\’d already sent him.
To top all of that, he completely messed up our insurance paperwork by informing us that we didn\’t need any additional homeowners insurance on top of the insurance that comes with the condominium. So we thought we were fine, since he made it sound like he\’d looked into this carefully… only to find out that no, that didn\’t count, and we therefore might lose the bid on the house if the bank didn\’t let us submit proof of insurance late.
And to finish off this shortened version of the angry email I sent to the bank, he was all but impossible to get a hold of. We had his email address, his office phone number, a secure email line via the bank\’s website, and even his cell phone… and the jerk wouldn\’t respond to any of those, unless you chain-called him every five minutes until he picked up.
So, for any people looking to buy a house, and who would like to avoid this trainwreck, please make sure you avoid one Stephen Kik, of Lake Michigan Credit Union. I can\’t speak for the rest of LMCU\’s staff, beyond that this was by far the absolute worst service I\’ve had from any employee there. But yeah, avoid like the plague.
Normally, if you have so many problems with a mortgage loan officer, you can switch to another one with limited issues. Unfortunately, when we tried to do that, the person who would authorize and oversee that transition was on vacation. Because apparently everyone takes vacations in January. So we had to stick with the uncommunicative, avoidant, absent-minded dunce for the entire thing, and it annoys me to this day that he probably made money from the whole debacle.
But In The End…
After dealing with those two sanity-shredding facets of the process, we did manage to get bank approval for our offer, a closing date set, and all our funds straightened out. My grandmother kindly gifted us with some of the money needed for the 20% down payment, and my parents loaned us the rest. These days, you don\’t strictly have to do a 20% down payment, but if you don\’t, they make you have an escrow account and you lose access to your money. It\’s basically an extra tax on the poor. We were thankfully able to opt out of that mess.
We scheduled a walkthrough to make sure the place was still as we expected it to be, and to check on the new sump pump. Everything was in order, and in fact, the seller was there and even gave us a set of keys. He wasn\’t even entirely moved out yet, so that was nice of him. He also showed us how to use the gas fireplace and gave us the day for trash pickup and such.
The closing itself was both annoying and anti-climactic. We had to drive about an hour to the western shore of the state to sign something like 150 pages of paperwork. The only bright point to it was that our realtor also came with, and she got us a nice blue teapot, some mugs, and some tea. Since I don\’t actually have a decorative teapot, this was kind of nice. We took her out to lunch afterwards.
All that remained was waiting for the seller to get done with moving out. Then we could start moving in. Next week\’s entry will cover furniture hunting and the actual process of moving in.
House-Hunting While Autistic, Part 2: The Search Process
This is the second in a series about my experience of finding a house. (Part 1 is here, this is part 2, part 3 is here, part 4 is here) As I\’m autistic, the process proved to be a bit more challenging than it would be for most people. Last week I covered why we decided to buy a house, and what things we opted to look for, given my disabilities and challenges. This week I\’ll be covering the actual search process.
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We opted to house-hunt in the winter. This was more due to the fact that winter was when we were ready to hunt, rather than any conscious choice. I had, in fact, agitated to start hunting a lot earlier in the year, but nothing came of it. Winter, however, is when houses go up for sale for financial reasons, so it wasn\’t the worst possible decision. It can, however, make the inspection difficult, since foundations are hard to inspect when they\’re buried under 2 feet of snow.
Despite the inspection problems, winter was possibly the best season for us to be shopping in… not because it\’s ideal as a season, but because of our particular housing market. In most housing markets, the homes go up for sale, and if they\’re well-priced and immediately livable, they might go off the market in a week or two. In this housing market? That same house would go up for sale and be gone by the end of the day. Three days, tops. Any home that didn\’t disappear within a week or two, in this market, had something wrong with it.
Once we had our list of criteria, including the bare minimum, preferred criteria, and ideal criteria, we went about trying to find a realtor. Apparently, these days you can opt to work with several realtors without a contract, but because of my social difficulties and lack of energy, we stopped as soon as we found one that we liked. That was, thankfully, the very first one. Chris found out about her through someone at his workplace, and got into contact with her. She was a sweetheart, and relatively laid back and hard working.
A Poor Start
She had us send her the criteria we\’d developed, and later, the spreadsheet we put together to rate homes. Using that, she narrowed down the various homes listed in our search area, and had several options for us to look over. We got started almost immediately, attending an open house on a nice little house, and then seeing another one afterwards.
All this happened relatively quickly, faster, in fact, than our pre-approval letter from the bank. So we ended up seeing several houses, and absolutely loved the very first one we saw. It had a lot of open space, and a public and private area of the home, along with a sunroom and everything we wanted on the \”preferred\” list. It was also distinctive, and not too large. But we couldn\’t put an offer on it (we thought) because we didn\’t have that pre-approval letter.
This ended up being a source of intense frustration for us, because as it turns out, even with us house-hunting in winter, the housing market in our area is completely insane. In the dead of winter, which is the off-season for house hunting. Can you imagine what it must be like in the spring and summer? By the end of the day, that house we loved was off the market and gone. I was extremely frustrated, and fairly sure we wouldn\’t be able to find anything else like it.
I took that negative attitude into the next weeks of showings. All things considered, it wasn\’t the worst thing I could have done. Almost all of the homes we saw in that time were inappropriate for our needs, or had problems that would have required fixing. One of them, less than 15 years old, was so badly battered that we couldn\’t imagine living there. Another, built in the 1920s or \’30s, had such narrow hallways that I felt as though I wouldn\’t fit. Yet another had the garage entryway dumping you almost directly down a flight of stairs into the basement, which I could almost guarantee would end in my going to the hospital within 2 years.
The Grind
Perhaps what contributed most to keeping that negative attitude, though, was the fact that there was no rest from the house-hunting. Any available time we had was spent looking at houses, or arranging showings, or looking at house-listings. This was not merely because we were in a hurry to ditch our apartment complex. If a promising home went up for sale, and we didn\’t see it that day or the next, it would be gone. That was the reality, and we\’d already seen it happen with the very first house we saw.
I was still worn out from Christmas, in addition, so the experience was extremely exhausting and bad for my sanity, to say the least. Checking out each home reminded me somewhat of job-hunting, where you mentally \”try on\” each job to see if you think you\’d be able to do it and enjoy it. Each house we saw, I had to mentally imagine myself living there, taking the groceries in, doing laundry, going to bed for the night. Doing this twice a day, sometimes, every day, for weeks, is not an experience I would consider fun.
In truth, all this travel, imagining, marking checklists, and inspecting wore me right down to the breaking point. I started having to tell my spouse to only message me listings at certain times, and to not bother me with ones he wasn\’t sure about. I became snappish and withdrawn. I stopped working on this blog much, and stopped seeing friends. I stopped doing anything productive outside of my blog, as well, and spent a lot of time in bed, doing close to nothing. In retrospect, I was basically defaulting to self-care, reading webcomics I enjoyed and comforting books where the good guy wins in the end… but at the time, it felt like I was just being a useless lump.
After the initial barrage, what remained on the market were homes that had things majorly wrong with them, and the occasional fresh home that went up on the market. Looking back over my notes and the various spreadsheets, I think we saw fewer than 25 homes in total. Which I suppose says something about my tolerance, or lack thereof, for the entire enterprise. Most of these homes that we saw didn\’t really interest us, but we went to see them in case they were more than the pictures seemed to show. Mostly, they would be summarized by, \”It\’s just a house, like every other house.\” Having seen that first house, which was really, truly special, I couldn\’t be satisfied with \”just a house.\”
Or at least, not until the weariness of seeing one house after the next, after the next, after the next, struck me. We had almost decided to put in an offer on a smallish, fenced in yard house. It had some eccentricities and some slight water damage, but otherwise seemed acceptable, if not really amazing. But my trip to Washington DC was coming up, so we weren\’t committing to anything… and then a condominium went up on the market.
Finding That One Place
It was awful timing, really. I needed to pack for the trip, and mentally prepare for the rigors of travel and the reviewing process. I had only just finished the written reviews for the trip. Still, the place seemed promising… so once again, I dropped everything to go to see the place. Condominiums in particular tend to go quickly, so it was dropping everything, or missing out on seeing the place.
It turned out to be fairly spacious. The driveway was strange, and crooked. But the place met the vast majority of our criteria. The appliances were all in good condition, the condominium fee was reasonable, and the house itself was built the same year I was born. It had good water pressure, and a view of a pond out the back window, along with various trees and just enough nature to be pretty.
What caught our attention most, though, was that it came with two things we\’d really wanted but couldn\’t reasonably put on a required list: a fireplace, and a hot tub. These two features were on the luxury list, and we hadn\’t reasonably expected to have them in our home. But here they were, a gas fireplace (albeit of an older design), and a one person hot tub.
I don\’t think we were so hasty as to decide to put an offer on it during the showing, but since I was leaving the very next day, we did decide to do so that same day. The resulting mess (because frankly that\’s all I can reasonably call it) will be described next week…
House-Hunting While Autistic, Part 1: The Criteria
This will be the first a series on my house-hunting experience. My spouse and I have recently searched for, located, bought, and are in the process of moving into a new home, and I thought it might be useful to explain some of the challenges and why we made the decisions we did.
(This is Part 1, Part 2 is here, Part 3 is here, and Part 4 is here)
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Why A House?
My spouse and I have rented an apartment together for years, now, and the rental rates just keep going up, for less and less space, services, and courtesy. I\’m sure in some places it\’s cheaper to rent rather than buy a home, but in our case, we figured out we could get about twice the space, for about the same price per month. So by that metric, it only makes sense.
We don\’t have much illusions by way of expecting to get more money out of the home than we put in, although I\’m told emphatically that used to be the case. Houses were an investment, people said, and you could expect to gain money if you took care of the house. That honestly does not seem to be the case any more, even in the market type around here.
In addition to paying less for more, we also wanted to live in a less populated area, in a different neighborhood. I\’ve complained in the past about the apartment complex we currently live in, but in brief: it\’s loud (car horns, people shouting, children shrieking), at all hours of the day. The apartment complex has changed hands four times in the last two years, minimum. The complex\’s repair staff keeps changing, information keeps getting lost, and whatever remains seems to be mainly ignored. The gutters sit clogged, month after month. The roads and parking lots go unplowed, with never enough parking spaces to go around even in good weather. The trees threaten to fall on the buildings near them. And the public spaces are dirty, trashed, and get used for all manner of unsanitary and antisocial activities.
What Kind of House?
I know most people put together some kind of vague criteria for what they want, and then dive into house-hunting until they find something they adore the look of. That… was not how we did things. I\’m autistic and detail-oriented, so I wanted to nail down what we wanted, why, and what things we could and couldn\’t compromise on.
This required a lot of talking, and involved some arguing and a bit of sulking at times. Communication is not a strong point for either of us, so this was a lot more work than you\’d think, and a house has a lot of fiddly details. Spreadsheets, word processing documents, and hours of verbal and typed communication went into the process.
We first set some minimum requirements for what we wanted. 2 bedrooms, 1 bathroom, a larger kitchen, in-building washer and dryer, 3 prong outlets in every room, central AC/heat, basic appliances, and parking that\’s at least off-street. Also, the house had to be livable already, we didn\’t want to spend weeks fixing up a home before we could live in it.
After that, we decided on what we\’d prefer to have… but were okay with compromising on, if it came down to it. We also set some additional \”wishlist\” items for an ideal home, which we weren\’t really expecting to find, but knew we\’d really enjoy having if we could get them. In the l end, we opted to address several issues with these lists:
Sound Sensitivity: This is one of the reasons we wanted multiple bedrooms. We technically really only need one to sleep in, but having a second to sound proof for a quiet space, or use as a home office, or have guests over in, was very important to us. This is also why we opted to look for a place that didn\’t share walls, or only had one shared wall, preferably away from high-population areas, children, and other sources of loud noise.
Gastro-Intestinal Challenges: Both Chris and I suffer from gastro-intestinal issues. He\’s lactose intolerant, and I get constipated and moody if I\’m fed dairy. I also end up suffering extra inflammation around the time of my period, and have bouts with diarrhea. We\’re still figuring out what exactly causes all this, but in the meantime, it behooves us very much to have at least two toilets in the home so one of us doesn\’t suffer while waiting for the other to be done. We also opted to look for a place with a larger kitchen, which will allow more complicated food prep to cater to special diets, as well as elbow room and ease of use.
Executive Functioning: While Chris and I could probably fix a home up using the Internet, money, and stubbornness, we knew that would be exhausting and time-consuming. We decided to opt for a \”ready to live in\” place, rather than a \”fixer-upper.\” We also wanted a place that had most, if not all, of the necessary appliances for living. A washer, dryer, refrigerator, stove, dishwasher, etc, are all things you can buy post-moving in, but you have to price them out, and it\’s complicated and time-intensive to do so. If it turns out that we hate one of those appliances post-moving in, it can be replaced. But signing up to buy all those things was a deal-breaker for us. It was already going to be hard enough to find a good home, let alone adding that stress on top of it.
Depression/Anxiety: This is another reason for the multiple bedrooms. Separating oneself from the source of anxiety, or having a quiet place to go to think about things, can be a very important tool against depression and anxiety. The second (or third) bedroom could be both a home office and a place filled with things I enjoy, like my lava lamps, decorative fountain, healthy snacks, and a comfy chair.
We also stipulated that we wanted a large enough space to entertain friends and family. Having a comfortable place to invite people back to, whether that\’s just to chat, sip tea together, or host a bad movie night, we wanted to have the option available. Finally, on \”ideal wishlist,\”, there was a hot tub. I used to love having baths, but fell out of the habit when I went to college. I\’ve since found I don\’t fit into most tubs anyway, so the issue has mostly fallen by the wayside… but soaking in hot water is well known as a relaxing thing to do, so we added it, just in case.
Time Management: I work from home, but Chris doesn\’t. So we made sure to house-hunt in a relatively small area in order to be close to three important places. First, Chris\’ workplace. A long commute is a great way to ruin a perfectly good job. Second, my parents\’ new home. My parents moved to our area recently, and I wanted to be close to them so it would never be a problem to go visit. Third, the local supermarket. Shopping is already fairly time intensive, so being 15 minutes or less away from the supermarket makes for a much less frustrating experience.
We also decided to put preference on condominiums, rather than true houses. The reasoning for this was that we\’d prefer not worry about lawn care and landscaping. Neither of us likes that stuff, and it would be one more thing to worry about. Bonus points if there was a recycling program and community trash pickup so we wouldn\’t have to worry about that, too.
Light Sensitivity/Seasonal Affective Depressive Disorder: I am both photosensitive, which is to say that sunlight and bright lights can really hurt my eyes, and prone to seasonal affective depressive disorder, meaning I need to get a lot of sunlight whenever possible or I\’ll be depressed. These two traits are naturally and annoyingly at odds with each other. So the compromise was to look for a place with at least one large, south-facing window… and to have a larger bedroom with windows that could be easily covered with blackout curtains. On cloudier days, and normal days I\’m handling the sunlight better, I can sit in front of that window with my cacti, or even go outside. On bad days, I can hide inside and draw the curtains, or stay in the bedroom.
A copy of the house-scoring spreadsheet we ended up settling on is here.
Next week I\’ll describe the actual house-hunting, and why it was a lot more difficult than expected.
"Colorblindness", Respect, and Person-First Language
Does anyone remember, a few years back, when it was fashionable to say, \”I\’m color-blind\” in regards to a person\’s skin tone, ethnicity, etc? The idea was to convey that the speaker wasn\’t racist, because they didn\’t see the skin color and therefore didn\’t judge the person based on that factor.
It was also crap. The person never stopped being able to see in color, and everyone\’s at least a bit racist, myself included (to my great annoyance), regardless of whether you can see. Racism, you see, comes in a lot of different flavors. Most racism today is not the facepalmingly obnoxious old grandfather or grandmother yelling about how those darned black people (insert your own N word here) are terrible or violent or inherently stupider or something equally incorrect. That type of racism has become socially unacceptable, and has declined in the last couple decades.
Unfortunately, aversive racism, or implicit racism, lives on. This refers to the tendency to avoid minority groups and unconsciously prejudge them based on stereotypes. Notably, this type of racism exists whether the person consciously harbors ill-will towards a minority group or not. Basically, otherwise egalitarian people can still be quite racist, based on their unconscious actions, assumptions, and expectations.
What does this all have to do with autism? Well… I\’ve commented on another civil rights movement and its relevance to autism before, but for this post, it\’s a comparison between racism and ableism. A really easy one, from where I\’m sitting. Ask a person in a wheelchair or mobility device whether they\’ve been avoided or otherwise discriminated against by strangers. Bet you\’ll get a really instructive answer, especially if the person has lived a few decades in that wheelchair/mobility device.
But a person in a wheelchair is just an easy example. It\’s a very visible disability, and much lip service (and some actual work) has been done to make buildings and other environments more accessible for wheelchairs and other mobility devices. For an invisible disability like autism, it\’s a bit harder of a sell, because we don\’t necessarily look disabled.
The disability version of racism is called ableism. It\’s the prejudice of those without disabilities against those who do have them. It\’s defining a person first and foremost by their disability. It\’s the assumption that people with disabilities somehow deserve them. It\’s stereotyping someone in a mobility device as \”less capable\” or \”less verbal\” than someone without one, without knowing that person\’s particular physical, mental, and emotional capabilities. It\’s assuming you know what\’s best for someone with disabilities, without bothering to get their input.
I had the privilege a few days ago, as I sometimes do, of sitting in on a parent support group. It originally began as a support group for parents with older autistic children, so around transition age (16-18) and older. Now, I strongly respect parents, especially those of special needs kids. Raising a regular kid is hard enough. Raising a special needs kid is at least one order of magnitude harder. But I\’ve noticed they tend to fall into some traps. Such as using the word \”never\” when it comes to their kids. Some examples: \”He\’ll never live alone.\” \”She\’ll never have a job.\” \”He\’ll never get off the computer long enough to do anything else.\”
This makes me more than a bit agitated and frustrated. You don\’t know what kind of capabilities your child has, in the end. Every person may have different limitations and capabilities and some people may truly never have the capability to live independently, or hold a full time job, but as people grow, those capabilities also grow. I think it\’s probably very easy, as a parent, to miss that growth when you\’re constantly stuck dealing with the kid\’s worst aspects and failings. Particularly since special needs kids can develop at a much slower rate than normal children. At almost 30, I think I might have managed to be about emotionally 20 at this point. And cognitively, I feel about 50, at least. Some days, a lot older and more cynical depending on the current news.
These statements, in addition to assuming these capabilities will never occur, also assume that these situations are ones the people in question want. Many people absolutely do want to live independently, and it\’s assumed by American culture that this is what everyone will do. But that\’s not necessarily what every person wants. Some autistic and disabled people are happier living at home with their parents, or with their siblings, or in a group home. For jobs, some people can hold at 40+ hour job, but others are happiest doing part time work. And there are a lot of kinds of jobs, too. You can\’t assume that because a person doesn\’t do well in a full time janitorial job that they won\’t do well in a full time farmhand position, or landscaping job, or some other type of job. You have to work with the disabled person, trying to line up their interests to a potential job.
All too often, autistic people aren\’t consulted about these things. It\’s a blind push toward what\’s assumed is \”best for us\” based on what the world dictates for people who aren\’t disabled.
Person-First Language is another example of this. It was decided by someone, at some point, that it is disrespectful to refer to someone by their disability (\”autistic\”) and people should instead be referred to as people, with their disabilities tacked on afterwards (\”people with autism\”). This was meant to promote the humanity of people with disabilities. It was a good effort… but one that\’s eventually drawn flack for not really doing what it was supposed to. For starters, the most respectful way to refer to someone is how they choose to be identified, not how you assume they want to be identified.
Longtime or extra observant readers of this blog will recognize that I usually refer to myself as \”autistic\” rather than \”a person with autism.\” This is twofold. Firstly, because Person First Language is awkward on the tongue. Secondly, because I blend relatively well with neurotypical people but believe strongly in promoting the welfare of all autistic people, I voluntarily put my diagnosis first. This, I hope, humanizes all of us on the autism spectrum, by putting a face to us.
Because unfortunately, we need that visibility. We need that humanization. We need to be listened to when we tell people what we need. Because people are still assuming they know what\’s best for us, when we can communicate what we want. Because \”colorblindness\” for disabilities exists, too, with people insisting that \”they don\’t see the disability.\” And just like how pretending you don\’t see skin tones doesn\’t fix racism, ignoring disabilities doesn\’t fix ableism. It merely makes it worse.
RIP Dairy
It finally happened. I finally got sufficient amounts of proof that I can’t ignore it any more. I am dairy-sensitive. (This is different than lactose-intolerant, which is my spouse’s problem and involves digestive issues rather than neurological issues.)
Intro/What is this Madness?
Ever since my LENS doctor suggested looking into the gluten free, casein (dairy) free diet, I’ve been kind of poking at the idea. Some of the side symptoms of autism, you see, can be made worse by ingesting food dyes, excessive amounts of sugar, gluten, and dairy. Several of the “my family’s experience raising an autistic kid” books talk about improvements made using gluten-free casein-free (GFCF) diets. It’s not that changing the kid’s diet “cured their autism” or anything like that. It was the side effects that improved: anxiety, depression, inattentiveness, sensory issues, cognition speed, etc. (To some parents, that is autism improving. But that’s an entirely different debate.)
Gluten takes a long time to get out of one’s system, so I’ve shelved that as a possibility for if I ever get ambitious. But dairy is a lot faster. Dairy can be out of your system in a week or less. My doctor suggested two weeks, at least, to abstain from consuming any form of dairy. I tried that, but not scientifically. I didn’t abstain entirely, I just eliminated most types of dairy from my diet, and kept tabs on my mood and such after consuming dairy products.
I’d been noticing a downswing in my mood after eating foods that contain dairy. I’d figured that was the sugar’s fault. I am very fond of ice cream, but of course ice cream is almost invariably sweetened with sugar or with high fructose corn syrup (HFCS). And sugar tends to mess with anyone, especially in large amounts. Given that I already knew my system was sensitive, I tried not to overdo it… and perhaps that’s why I’m only figuring this out for sure now.
The Stumbling Blocks
I’d actually cut milk out of my diet awhile ago, preferring almond milk for its longevity in the fridge. Slightly different taste, but it lasts three times as long? Never have to taste sour (or souring) milk, and throw out half a container again? Yes please!
Cheese is harder. I definitely no longer buy much cheese, but shredded cheese still goes in some foods that we make at home, and comes on a lot of things in restaurants. We’re Americans, most Americans have the European mutation that allows digestion of lactose (milk protein) long beyond the nursing years. I grew up eating cheese. I like cheese on my burgers, and I can recognize the individual tastes of swiss, colby, cheddar, muenster, mozzarella, gouda, havarti, and provolone. If you hand me a cheese platter and some crackers, I will enjoy myself. At least until later, when apparently all the dairy decides that I have had quite enough fun and it is time to suffer.
Ice cream is mainly my last issue with going dairy-free. I haven’t been impressed with any non-dairy ice creams I\’ve tried, and they’re expensive to boot. Instead, I got pickier about my ice cream. I stopped buying regular grocery store ice creams, and started only buying Ben and Jerry’s. The stuff is expensive, but it goes on sale every so often, it’s Fair Trade, and the Ben and Jerry of the company are highly respectable, moral people for having so much money and a successful business. They got themselves arrested last year while protesting all the private money in politics in Washington DC. Also, their ice cream is basically the best stuff on the market. I kind of couldn’t feel bad about only buying their stuff.
The Tipping Point/”Oh, Duh” Moment
I had been having a pretty average day, at least for this part of my life. Wasn’t in a bad mood, wasn’t in a good mood, was just kind of “eh, it’s fine.” We had cow milk in the fridge, for the first time in a good while. It’s not that I hate milk, is that it goes bad too fast. But we needed it specifically for a recipe, so I got a quart of it. That wasn’t much, we could probably go through it, I figured. He used his bit for the recipe, which left more than half the container… so this afternoon, I made myself some mac’n’cheese, and used some of the cow milk. And before that, I drank a bit to make sure it was still good.
It tasted fine, and wasn’t souring. But an hour later, I was in a foul mood, my limbs felt weak and shaky, and my stomach seemed upset. Not “you’re going to hurl, get to the bathroom now” upset, but definitely unpleased with me. I had been ignoring the symptoms as they came on, reading a book for my next Friday entry, until suddenly I noticed it all at once. And recognized, of course, that this was highly abnormal for the situation.
You see, I had no stressful events coming up for the rest of the day. I’d done everything that was on my plate and was working ahead, which tends to put me in a more satisfied state. The book I was reading was interesting, even slightly pleasant. Yet somehow I was now angry, sick, and shakily-weak.
So I began looking backward, comparing the sensations to previous sensations I’d had after eating cheese and ice cream… and it seemed about right. I suspect milk produces the strongest reaction, being relatively unprocessed. But cheese and ice cream both had also set me off in a similar way, muted perhaps by the other ingredients they’d been mixed with.
More or less, I accidentally did what’s called a food challenge in allergy testing. You eliminate the questionable food from your diet for a couple weeks, then give a moderate dosage and record the results. If you don’t see anything different, that food is probably safe for you. If you do have a reaction, physiological or neurological, you then know that food is not your friend.
This type of dietary experimentation has been covered in at least three of the books I’ve reviewed, but I suppose I was never willing to commit to not eating cheese and ice cream, purposefully, long enough to actually do it. Hence it happening on accident instead.
Well Crap, Now What?
Well… I can definitely stop buying cheese. I’m not sure I can stop consuming cheese entirely. Right now, there’s a whole batch of freezer burritos in the freezer that I am flatly unwilling to chuck out simply because they contain shredded cheese. I can, I suppose, use up the last of the cheese slices in my refrigerator on bison burgers today and then commit to not buying more.
I’m going to need to think up something to put on sandwiches instead of cheese, though. Apparently my generation likes avocados a lot, on everything, but I never really got into that. I guess maybe pesto? Except that has cheese in it too. Not a lot, though, and maybe I can just find a recipe that’s just almonds, olive oil, basil, lemon zest, and… I guess just skip the grated parmesan or romano cheese… Or maybe there’s some kind of alternative. I’ll need to do more research.
I don’t know what to do about the fancy cheese shop in town, though. Their staffpeople are very sweet and let you try a lot of different samples to get a sense for the various kinds of cheese. Do you know how many kinds of cheese they have? It’s over 100 different kinds. That includes my favorite cheese in existence right now, a sharp cheddar with protein crystals and an utterly delicious taste. It is basically the best on crackers. And sandwiches. And… basically anywhere you put it. I don’t go to that shop often, but it’s definitely going to be asking a lot to simply… give up all the dizzying varieties of cheese they have.
Maybe I won’t have to, entirely. They have goat cheese, which I’ve always thought was very strong-flavored and gross. But they also have sheep cheese, which might not have casein in it. I’ll have to check with my doctor. Or do another, more purposeful food challenge, I guess.
Happily, it seems like I can still capitalize on the ice cream snobbery I cultivated over the last year. I did a bit of research for this post, and it seems Ben and Jerry’s has developed almond milk ice cream. I don’t think I’ve seen it in my local grocery store, but perhaps I simply haven’t looked hard enough. I still shouldn’t be eating tons of it, since I need to lose weight and I somehow doubt this stuff will be calorie-free as well as dairy-free. But it’s at least promising. And it’s vegan, which is kind of amazing. I have no doubts it will still be good ice cream, though. It’s Ben and Jerry’s. I literally can’t imagine them marketing a bad product.
Gluten..?
The question about gluten still remains, of course. Gluten and casein apparently have very similar structures, which means the body can sometimes treat them the same. Especially overly sensitive systems like mine. I think
I’m still going to shelve the question for a few months, at least. Gluten not only can take months to get out of your system, it’s in so so so much stuff. I recognize that bread isn’t the only food in the world, but I actually don’t love rice that much, quinoa is expensive, and a lot of the “ancient grain” products are just mixed right in with more gluten-containing grains.
Also, my father may have nicknamed me “The Bread Girl” growing up because I like bread so much…
Basically, it’s a can of worms I am super not interested in opening up right now. Trying to make sure I go dairy-free is going to be hard enough. I think it’ll do me good, and it will definitely do Chris good, since his intestines rebel when he eats dairy products (he has a big box of lactase supplements for when he has to eat cheese and other dairy products).
I’m just… starting to get to the point in the grocery store where I end up looking past entire aisles of food, whole sections dismissed as “irrelevant and/or blatantly harmful.” And having all those possibilities was one of the things I really liked about grocery shopping. Now almost everything is calculated risks, off limits, or “use sparingly.” I have so few pleasures in life, it’s really hard to see this happening more and more. If gluten turns out to aggravate my system too, it’s going to be even worse. I don’t think I can handle that right now.
Dissociation: A Stranger to My Life
I\’ve just gotten home from my week and a half trip out to Connecticut to help my parents move. Now both in their 60s, they\’re politely and thoughtfully moving themselves into an independent living facility/retirement home. The place is such that if they should become unable to maintain independent living, the management will provide helping staff for them. If that becomes too little help, they may be moved into an assisted living unit, and eventually, if necessary, into an intensive care area. Basically, they\’ve made it so that I, their closest child, will not need to worry about their living accommodations and care, right up until they die.
To facilitate this, though, they had to embark on a major stuff-downsizing campaign. So my mother spent almost the entire summer pruning the various things she\’d collecting in her years of life. Old art projects from my childhood, scads of paperwork, sheet music, odds and ends, etc. This was difficult for her, because her natural impulse is to keep everything for the memories and nostalgia and the \”in case we need this\” impulse. However, she\’s been working on reversing this tendency for at least a decade now, and she\’s gotten much better at letting things go. By the time I showed up, there were less than 30 boxes left to go through, at least ten of which were partially or entirely mine.
So I spent a lot of time in the basement this trip, with my head full of half-remembered memories as I sifted through years of my life stored in battered cardboard boxes. I threw out or donated most of what I found, but as I did, I must have absorbed some of my high school mindset. The various notebooks I went through contained some of my high school dilemmas, rants, and miseries. And of course I was staying in my old room, with its peculiar odor, in the old house, with all the same noises and quirks. I soon even reached a familiar state of sleep deprivation, which plagued me through late high school.
In short, it\’s sort of like I was transported partially back to my high school years, sans that I knew I was autistic and that sudden sharp noises and anxious people hurt and wore on me.
So maybe it\’s not surprising that when I finally got home to my apartment, I only half-recognized the wood flooring. And my computer\’s mouse and keyboard felt unfamiliar, despite that I do most of my work on it. And most upsettingly to me, that I only half-recognized my spouse\’s face, even as I did recognize his voice and demeanor.
It\’s not that I hadn\’t seen him during the trip. We\’d used a video phone system to chat for a half hour or longer every evening I was gone. I was pretty worn out every night, though, especially towards the end. Maybe I wasn\’t looking as much as I could have been? Either way, when I arrived back and was summarily confused by my lack of complete recognition, I don\’t think he noticed or cared. He was happy to see me and helped me carry my luggage back, which was why I was able to contemplate the flooring in the foyer, and my keyboard and mouse later.
I guess what floors me about this whole experience is that it was only a week and a half. I really wasn\’t gone long. But now my normal life feels strange. A book I read recently suggested that autistic brains are much more plastic (changeable) than neurotypical brains, so perhaps my brain was already shifting to accommodate the stressful circumstances I put it in?
I\’ve had this kind of dissociation in small portions before, where I\’d left off playing a computer game for almost a year. When I came back to it, the game interface and mechanics were simultaneously familiar and unfamiliar. But I don\’t think I\’ve ever had the dissociation on such a grand scale. My fingers are unerringly typing out this post on my computer\’s keyboard, and it no longer feels so unfamiliar now. So the confusion will pass, I\’m sure.
Hopefully soon. I have adulting to do: bills to pay, car registration to finalize, passport to renew, blog to keep up with… And soon, I\’ll need to incorporate my various personal items from my parents\’ house into this apartment, too. I think the process may take longer than it would otherwise. Normally I have more structure to my life than I do right now… because of the extreme amounts of stress, I stopped playing my usual computer game (and won\’t be returning to it; it eats too much time) and quit one of my volunteer jobs. I\’m going to have to find some other things to do. In the meantime, I guess things will feel strange for awhile.
Stream of Consciousness: Stress and Dependability
Introduction
I\’m running pretty ragged lately. I have a lot on my plate. Some of it\’s new stuff, stuff I haven\’t had to do exactly like this before. That\’s hard. But it\’s doable. It\’s not what\’s running me ragged. I\’m fairly flexible for being autistic, and I\’ve walked on the razor\’s edge of \”way too much to do in way too little time\” before. I didn\’t break then, I probably won\’t now.
But this situation is different than anything I\’ve had to deal with before, in one very major way: a lot of the involved forces, actors, etc, are partly-to-completely unreliable. And that is messing with me, big time.
The last time I was pushed to a bleeding edge like this, I was in college. Freshman year, second semester. I had a ton of projects due in finals season, and of course the finals themselves. I\’d been thrown out of a group project for being autistic, more or less, and suddenly had to do the whole project by myself. My boyfriend at the time assumed I would crumble under the pressure at some point, and he would have to clean up afterwards. I still kind of resent that assumption. But I get to resent that assumption because I made it work. The deadlines were set in stone. The projects had nice, clear descriptions. The finals had dates and study materials. All I had to do was be the superwoman of time management and prioritization, and survive until the end of the semester. I did that. It wasn\’t pretty. I had some crying fits in between studying. I was religious about my planner and my whiteboard of projects. I may not have eaten terribly well. But I did it.
Turns out real life involves a lot more cooperation with other people. In college, it was mainly me I had to rely on. Group projects were a thing, of course, but there weren\’t that many of them that semester, sans the one I got thrown out of. I think I prefer college.
I am presently trying not to fall to pieces, in part because I\’m not meeting my own standards for this blog and its posts. In part because I don\’t seem to have enough time to spend on creating an interesting fantasy world for my friends to enjoy. But really, other than detracting from my self-image and self-esteem, those are manageable. What\’s really got my goat is the self-advocacy group I joined over a year ago.
People Aren\’t Dependable
I\’ve heard it said that working with people is rather like herding cats. Maybe that\’s true of people in general, but it\’s not true of my parents. When they say they\’re going to do something, they do it. They think carefully before accepting a position, or signing up for an event. They\’re on time to appointments. So that is what I consider normal. I found, growing up, that I was happiest that way: being dependable, and people being dependable in turn. Since people often give what they get, it worked out fairly well, for a while.
That dependability is important. I make assumptions and plan my life around my calendar. If I\’ve been invited to a party, and I find out two hours before that the party is canceled, or worse, its location has been moved to a location an hour away, I\’m going to get upset. My careful planning and preparations for going to said party have been wasted, and I suddenly have to re-plan and re-prioritize what I\’m doing with that time.
Suddenly, I have to plan on twice as much traffic and more gas to get from where I was before plans changed. Suddenly, I have to live through my nerves shredding as I apologize to a friend for having to leave early from our social time. Or suddenly, I have to plan on being half an hour late and suffering that anxiety because I can\’t possibly make my schedule work. The sudden shifts upset me, and I flail and panic until I can get my calendar re-organized to work with the new plan.
If I can\’t reorganize, it shreds me up emotionally and mentally. I waste of a lot time and energy spinning my wheels and trying to make the situation work.
I know, of course, that life happens. Car trouble happens, for example. You can yell and scream all you like at a flat tire, it\’s not going to re-inflate or replace itself with a new tire. Same with someone getting really sick. But there\’s a difference between that and plain forgetfulness.
Forgetfulness, you see, is preventable. If you have a smartphone or a computer or even a paper planner, you have no excuse for being forgetful. Simply write down the event, and refer to your planner. Heck, you can even set your smartphone to remind you, repeatedly, that an event is going to happen. My particular calendar will remind me the day of, an hour before, a half hour before, 15 minutes before, and even 5 minutes before if I care that much. I have a hard time forgiving habitual forgetfulness, because of how easy it is to counter.
I am dealing with a lot of habitually forgetful, disorganized people at this group. I\’m leading a committee for the board of directors, in a second committee, and trying to work with a third group that\’s just me and another person to host an event. I have tried to make all the meetings for these groups, tried to keep in contact with the people involved, to set dates that work with their schedules, etc.
And I\’m getting back… indifference. Silence. Excuses. People are abandoning my committee. As far as I can tell… because I\’m requiring them to do a half hour\’s worth of work, once a week. I ask if there\’s anything I can do to make it easier on them. What the best way to contact them is. I get nothing. Or I get worse than nothing: unreliable info.
I am literally going to be running a two hour meeting for self-advocates in just over a week, and I have no idea if the other person is even going to be there. In the meantime, I\’m supposed to be advertising (I hate advertising) and arranging for food for an unknown number of people (I\’ve gotten no RSVPs). And now the support staff have also told me that apparently I need to have a presentation ready on a relevant subject, to share with the group. I think I glared bloody murder at the email that informed me of this fact, for about ten minutes. It beats crying, screaming, and smashing things into my desk.
My doctor tells me that I look \”puffy,\” which she tells me means my system is inflamed from all the stress. All my cells have puffed up a bit. I have kind of noticed I\’ve put on weight, or thought I\’d put on weight. My baggy shorts aren\’t so baggy despite my 3 day a week exercise program. I have no idea if this happened to me before, but I think I\’ve seen something similar in one of my family members when he was having a really rough time in life.
Handling It
High stress situations are kind of the story of my life. Sudden noises startle me, triggering stress reactions. Babies crying, or children shrieking outside, fray my nerves. Social interactions, especially unexpected ones, throw my analytical brain into high gear. Situations where people are relying on me stress me out, too, because I\’m afraid I\’ll fail them, disappoint them, and disappoint myself. Life itself is unpredictable.
What I\’m saying is that I have a pretty high stress maximum. So I\’d actually be kind of curious to see what would happen if I had a blood test for stress hormones or whatever, right now. Likely, the results wouldn\’t be pretty.
I go into avoidance mode when the stress goes over a certain threshold. So I\’ve been reading a lot of a favorite book series. To the point, unfortunately, where I haven\’t been reading books I should be for the blog, or doing things like writing blog entries or planning the next parts of my life.
I\’ve been doing all that pleasure reading because I literally can\’t focus anyway. And at least sometimes, the book series makes me smile. And it always has a happy-ish ending, for each book. Real life isn\’t that polite. Sometimes the hero fails. Sometimes, cartoonishly evil and egotistical people sit in power, shoved around by more subtle, competent evil people. And they use that power to oppress and destroy the weak and powerless, all for a smidgen more power in their vast array of power.
At times like that, you find out that life doesn\’t end. It keeps marching right on, heedless of your anguish and pain. And the due dates keep coming, and they also don\’t care about your anguish and pain.
So I have my books. I have a little indoor fountain thing that lights up red and blue and makes semi-soothing water sounds. I have sugar-laden snacks and calorie-intensive foods that taste good and make me feel better in the short term. And I have what little routine I can manage.
But mostly, I have the vast amounts of unreasoning stubbornness that both my parents gifted me with. It\’s why I got through that semester in college. Maybe it\’ll be enough to get me through this.
realisticautistic 