House-Hunting While Autistic, Part 2: The Search Process

Posted on by Realistic Autistic
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

Posted on by Realistic Autistic
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)

——————-

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.

What I Learned from the Autism Research Program

Posted on by Realistic Autistic

How This Happened, and Getting There

I went to Reston, Virginia, just outside Washington DC recently.  I\’ve covered this in recent entries, but for readability\’s sake, I\’ll rehash it.  About a year and a half ago, John Elder Robison, one of the most respected autistic self-advocates in the US, put out a call for autistic people to sign up to be research reviewers for the federal government\’s research programs.  I looked at the information, said, \”Why not?\” and sent a message to the contact listed.  You need to be vetted by an organization, which I was, via Autism Support of Kent County.  To my surprise, (and after an interview process) I was invited to participate.  2016 went by, and nothing happened, so I sort of forgot about the matter.

Fast forward to around Thanksgiving 2017 this year, and my phone rang with the opportunity to participate in 2017\’s Autism Research program.  40 hours of work, reading, researching, and reviewing scientific proposals, right through December.   At the end, a trip to near-DC to do the final reviews.  I winced, admittedly.  My December was already going to be stressful with the holidays.  But it was a hard opportunity to pass up- the chance to advocate not just to parents (though that is definitely important) but to researchers, who rarely leave their labs to begin with.  I couldn\’t say no.  Unsurprisingly, December was kind of insane.  But I did manage to get all the work done, despite much dilly-dallying, the traveling, and the time demands of the holidays.  The government paid for the airplane tickets (but not the baggage fee, which is reimbursed separately), so off I went. 

There were two different groups for this year\’s grants: theoretical research, and clinical trials.  The theoretical research was unfortunately the much larger category, and also the one I was assigned to.  This was rather disappointing, because part of what I\’d wanted to do in DC was explain to these scientists how incredibly important immediate results were.  I wanted to tell them that time was up on researching \”mechanisms\” and genes, and specific processes that might increase autism rates, because we need help now, and we\’re not getting it.  I somehow managed to do all my preliminary reviews and get to DC without realizing that I\’d been specifically assigned to the \”theoretical and new ideas\” section of the grants.  This was unfortunate, because I had some variation of, \”this isn\’t helpful immediately, maybe consider that we need help now?\” in 7 of my 10 reviews.  Slightly embarrassing, suffice it to say.  I had to do a lot of rewriting my reviews at the end of the trip…

The specific aim of that group wasn\’t the only problem I had.  At least a third of the research proposals I reviewed involved experiments on mice.  These are called \”mouse models,\” and they\’re a staple in a lot of autism research.  Instead of experimenting on autistic people (which is hard to get past an ethics board), you experiment on mutant \”autistic\” mice.  I found this both annoying and utterly perplexing.  How do you make a mouse autistic?  Is that even possible?  How is that even a reasonable thing to do?  So at the end of the first day (which was more meet-and-greet than it was reviewing research), I asked the room of other reviewers if someone would please explain mouse models to me.

Mice Are Not Autistic

I got one taker to explain mouse models, an older man, who roped a friend of his into helping to educate me.  I later pestered a third scientist for a different perspective and better understanding of the subject.  First: the mice are not autistic.  You literally cannot make an autistic mouse right now, and you may never be able to.  Because we don\’t know what causes autism, only dozens-to-hundreds of factors that can play into the question, you can\’t make an exact representation of autism in a mouse.  Some of those factors are genes, too, and mice have different DNA than us.  Some mutations that seem to play into autism are lethal if applied to mice.  Especially if you try to do more than one.

So mouse models are relatively simple mutated mice.  Only a few different genetic modifications.  Too much more than that, and the mice stop breeding, or don\’t produce offspring even if they do breed, or just outright die.  So it\’s a tricky balancing act, because you need the modifications to make the mice have autistic-like traits.

There are whole jobs revolving around simply creating mutant mice for studies like this.  It\’s a hard job, too, because you have to adhere to three kinds of ideal standards:

  1. Face Validity– the mouse behaviors need to look like the autistic behaviors.  So, one example is a particular mutant mouse strain is prone to jumping, repeatedly, for long periods of time.  This roughly corresponds to stimming, and so they do experiments on those mice to test things that might affect stimming.  Needless to say, mouse models tend to handle this type of validity fairly well. 
  2. Construct Validity- this one is a bit harder.  Now our mice can\’t just seem to be stimming, they need to have genetic abnormalities or specific environmental condition triggers like actual autistic people.  Some of these genetic abnormalities are outright fatal or otherwise unusable in mice.  So you can see this starts to get complicated.  
  3. Predictive Validity- the mice have to respond to treatments, like medicine, in the same way an actual autistic person would.  Otherwise the mice are of minimal use for the experiments, because this is the whole point.  If something works for a mouse, you want there to be a pretty good chance it\’ll work for a human the same way, too.  

Lining these three types of validity up perfectly in a mouse model of autism is not feasible at present, because again, we don\’t know what causes autism.  Trying to model it perfectly is just not possible.  So instead these mouse models tend to focus on specific identifiable features or side-traits of autism.  Usually at least two.  Stimming, or sensory sensitivities, or social interactions, or specific genetic quirks.

And the big question I had to ask: why mice?  Why not monkeys?  Why not something larger and more close to actual humanity?  The answer is, perhaps unsurprisingly, money.  Mice are very inexpensive.  Techniques for meddling with their genetic codes are well researched and relatively simple.  Also, they have quick life cycles, which lets you test a lot of generations in short order.  If you used monkeys, or dogs, or even chimpanzees, you\’d also risk a lot more outcry from animal activists.

The Reviewers Themselves

So it\’s pretty much mice.  And some rats.  But almost nothing else.  Micemicemicemicemice.  Listening to the researchers talk about their subjects, I kind of wonder if they aren\’t more familiar with, and more fond of, their rodent subjects than they are the autistic population they\’re trying to help. (This isn\’t to say that these researchers weren\’t willing to learn from me, or were bad people or something.  All of the people I met on this trip were pretty much lovely, and my comments and observations were verbally appreciated by more than a few people.)

Speaking of the researchers, it didn\’t occur to me at the time, but in retrospect I should have probably guessed: researchers are almost invariably huge nerds.  This was very comforting to me.  Nerds are easy to talk to.  You just ask them what they do, or what they care about, and sit back and listen while they spout whole paragraphs and pages about it.

I did kind of regret not asking more of the researchers about what got them into studying autism.  There were all sorts of people there, with a dozen accents from all over the world, it would probably have been a lot of interesting stories.  At least half the scientist reviewers were women, which I found unusual given the statistics for STEM careers.

Quite a bit of chatting and socialization ensued, even outside of the reviewing hours.  I tried to make it to most of the formal and informal events, but didn\’t entirely succeed, given how tired I tended to get by the end of the night. 

Every consumer reviewer was biologically female, also.  That was a little strange, considering the ratio of male to female autistics is 4 to 1.  (I say biologically female, because I\’m agender and when I talked about it with the other reviewers, at least one of them commented that she didn\’t feel particularly female either, now that she thought about it.)  At least two of the other autistic reviewers are in the category that I tend to call \”The Lost Generation,\” except they themselves weren\’t actually lost.  They got their diagnoses late in life, and didn\’t get shunted into mental institutions and prisons (these two things are sometimes the same).  A lot of their generation weren\’t so fortunate, particularly the more heavily affected ones.

In addition to the other autistics, there were also a couple mothers of autistic children serving as consumer reviewers.  The one that served as my mentor was retired military, and has a more heavily affected son in his 20s.  She was quieter than the others, but had lots of good things to say when she did speak up.

On the Whole…

This was a pretty good experience.  I learned a lot of useful things, met a lot of interesting people, and I\’ll be getting paid for it.  I would definitely do it again, particularly if the bulk of the reviewing didn\’t have to happen around Christmas.  It was still doable, obviously, since I did it, but if I had to do it again, I\’d definitely just do it all before leaving for the holidays, and not have to care about it later.  
The reviewing rooms were set up relatively comfortably, with a special laptop for each reviewer and a microphone between every two reviewers.  The chairs were arranged in a very straight U shape, with the moderators at the bottom of the U and the reviewers in two lines facing each other.  This allowed for some ability to see who was talking, and for everyone to see the screen at the far side of the U.  There were also support personnel off to one side, but they kept quiet unless called upon.  They were there to take notes, provide tech support, keep track of time, etc.  
I can\’t (ever, for some reason) talk about the research I reviewed specifically, though I will say there is definitely one researcher out there that needs to be smacked upside the head repeatedly with an ethics book.  I pointedly didn\’t memorize the institution and head researcher attached to that study, so I couldn\’t be tempted to yell at him later.  
As a side note, this program through the US government is the only grant program in the nation (for all conditions, not just autism) that includes consumers in its reviewer ranks.  It\’s common enough to have scientists look over the other scientists\’ work, but asking the opinions of people whose lives are directly affected by your research is apparently a very new thing.  This knowledge was rather dispiriting to me, but it probably means I\’m never going to be out of a job as a self-advocate…  It does strike me as kind of hilarious that the government is at the forefront of progress in this area.  Y\’know, the same government that trundles slowly, ponderously forward in pretty much every other case. 

My amusement aside, the staff of the program were pretty much unfailingly polite and willing to listen.  The scientific reviewers were a bunch of good natured nerds, for the most part.  The consumer reviewers were all interesting, pleasant people.  It was definitely an interesting experience, and one that gave me a lot to think about.  If nothing else, I should also be better able to read research articles for my Reading the Research posts. 

An Open Letter to Autism Research Scientists

Posted on by Realistic Autistic
This open letter comes about because I\’ve been reviewing research applications for the DOD\’s autism research grant program.  As I am restricted from putting my precise feelings to paper by various guidelines, I\’m going to settle with summarizing them here, and then spend the time formatting my objections according to the government\’s guidelines.

I can\’t, according to the terms of the job, discuss anything specifically found in these applications I\’m reading… but I don\’t have to, because I have a lot of things to say about the general content and focus of them… 

Dear Autism Researchers,

Please, please, please stop using overly obtuse language in your research papers and applications.  I recognize you have specialized concepts to convey, and those things have names, but there\’s a difference between conveying concepts and using words like \”elucidate,\” \”bioenergetics,\” and \”sensorimotor\” all in the same sentence.  There is also a difference between trying to convey a concept quickly, and inventing or using unnecessary acronyms.  Seriously, sounding like you swallowed a dictionary and are now throwing it back up onto a paper does not make you look smarter.  It makes you look pretentious.  It makes you look like your ego is the only thing that matters to you, and your research is just a vector for showing off.  This is triply true when you\’re writing a lay abstract, which is meant for non-scientists. 

Oh, I know, \”It\’s just the style of how papers are done!\”  Well, let me ask you this: Are you, or are you not, people dedicated to advancing human knowledge and discovering new, better, different ways of doing things?  If so, why are you making it harder for everyone, including other researchers, to understand you?  You should also keep in mind that your research is no longer sequestered in your hallowed institutions and universities.  Parents of children on the autism spectrum read your papers, and autistic people like myself do as well.  These are our lives you\’re researching.  We want to understand what you\’re doing, too, and we shouldn\’t need a PhD to do it.  Stop making it harder for us!  Autism may seem like an intellectual puzzle to you, but it\’s a difficult reality for us, and the more we can work with you and your research to improve the world and our lives, the better.

I\’ve said we need you, and that\’s true.  Researchers are the driving force behind progress toward a better world for everyone.  But you should also keep in mind that you need us.  Talk to us.  Learn from us.  We know autism like you never will.  While you fiddle with your animal models, your mitochondria, and your genetic patterns, we are living and suffering and thinking about all of it.  We have ideas for research, too, and you are missing them by spending all your time in laboratories, with each other, in academic echo chambers.

One very specific idea most of you keep missing is that the question \”what causes autism?\” is now unimportant when placed beside the vast and desperate need for the answer to, \”what helps people with autism live better?\”  You\’ve had more than 20 years to research \”what causes autism?\” and the underlying mechanisms, genetic factors, environmental factors, etc.  You still don\’t have solid answers.  The average age of someone on the autism spectrum is now 18.  That is the age where we either start into the real world, or we start falling through the cracks because our support services through school ended.  Guess which of these options happens a lot more?

Quit trying to find out what causes autism.  We, the autistic community, already exist with autism.   Even if you found the \”what causes it\” tomorrow, it won\’t undo our suffering, or improve our lives in any real way.  We care about getting effective therapies for our problems.  We care about having good social supports, and programs to help us get jobs and have social lives.  I will literally yell this from rooftops if I have to, and some of you are going to get an earful when I get to Washington D.C. this January.  Try to listen.  I will try to be polite and listen to you in return.

Speaking of politeness, could you please try not to refer to autism as a disease?  I, personally, am fine with the word \”disability,\” though it misses the fact that autism has also given me strengths.  I\’ve seen some researchers use the phrase \”Autistic Spectrum Conditions,\” which I found interesting, and perhaps that would be the most respectful way to refer to us.  You see, while most of you are busy training magnifying glasses on all the disabilities and problems autism can come with, we\’ve built our own culture and understanding of autism.  You just haven\’t been listening to us.

To some of us, autism is not an ailment we suffer from, it\’s a condition that is fundamental to who we are.  We\’ve built communities around it, and understanding it and ourselves.  We tend to have some good traits in common, such as honesty.  We tend to value expertise and skill.  You might, in fact, consider autism our cultural heritage, in that sense.  Think of it like how African American people have a cultural heritage.  So some people, myself included, get a bit irate when all of that is dismissed as a \”disease.\”  Particularly if the word \”cure\” comes into the picture.  \”Healing\” and \”reversing\” and \”erasing\” are really not much better.  Please be respectful of the people you\’re trying to help. 

Sincerely,
Sarah Frisch
The Realistic Autistic

RIP Dairy

Posted on by Realistic Autistic

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.

New Vocabulary

Posted on by Realistic Autistic
This entry is brought to you by a very thoughtless action on the part of someone I rubbed elbows with recently!  They don\’t know they inspired an hour long angry rant at my poor spouse, Chris, and they probably never will, but you all get to enjoy the beneficial results of that rant.  With the help of another friend, who is quite thoughtful in matters of semantics and societal justice, I discovered three new words, which I would like to share with you.

Some introduction / what is neurodiversity?

I am autistic, which means that I do not operate on the same mental and emotional wavelengths as most people.  My brain is literally wired differently, so I naturally think and act differently.  This has made my life difficult, and continues to do so, because most people expect others to think and act the way they themselves think and act.

This seems absurd, perhaps, to the casual reader.  After all, we have many differences, backgrounds, religions, cultural heritages, economic levels, etc.  And that\’s true, humans are a varied species.  But I\’ll also tell you that, at least in the United States, there are certain expectations that are shared across pretty much all those categories.

For instance, you look at someone when they\’re talking to you, but you don\’t stare, so you glance away every now and then.  The percentage is about 85% eye contact, 15% glancing down or to the side or at whatever you\’re talking about.  I know this percentage because I do not automatically want to look at a person when I\’m talking to them.  Looking a person in the eye is uncomfortable, to the point where it can feel like getting hit in the head by a baseball bat.  Yet I am still expected to take that baseball bat to the head every time someone talks to me.  That\’s the rule, and it\’s one that everyone takes for granted: when someone\’s talking to you, you make eye contact without staring.

People on the autism spectrum, and people with other brain differences, are called neurodiverse, or neurodivergent.  The movement for acceptance of people like me is called neurodiversity.  In essence, it\’s basically calling for a \”live and let live\” mentality when it comes to people whose brains, and thus thoughts and actions, don\’t entirely match your own. 

A metaphor / the social contract

This movement is kind of like saying that people with iPhones and people with Android phones can live and work together, if we just put in the effort to accept each other.  We may not entirely \”get\” each other all the time, or even be able to do all of the same things on our phones, but our phones are still phones.  Apple\’s App Store has far fewer apps than the Google Play app store, but they tend to be less buggy and better put together.  However, Apple\’s iPhone won\’t let you play with most of its settings and really customize how the phone works, because Apple\’s motto of \”it just works\” doesn\’t work so well if everything isn\’t cookie-cutter.  Android, on the other hand, will let you stick your fingers into all the settings and customize practically everything, but if you break it, you\’re probably stuck trying to fix it yourself.  Some of the popular apps, like Twitter, Instagram, Facebook, etc, are for both types of phones, but sometimes an app is only for one phone or the other.  Without that app, the two phones don\’t have matching functionality, even if the other phone finds a similar app. 

Get the idea?  Now imagine the whole world is iPhones and you\’re an Android phone.  Depending on how much time, patience, resources, and effort you\’ve put in and others have put in, you may have some of the popular apps that others have.  People on the autism spectrum must often teach themselves or be taught social skills, and once those rules are learned, can then blend reasonably well into neurotypical (normal) society.

As an autistic person who focused very intently on learning social rules and expectations, and then literally studied psychology to learn them even better, I qualify as \”better blended.\”  Unless you know better or are a very astute observer, you would likely think me perfectly normal if you passed me in the store or had a 5 minute conversation with me.  Because I had supportive parents, enough observational skills, and presumably an aptitude of some kind, I learned through hard work what most people know intuitively.  Some autistic people learn these things via therapy, or books, or by lots and lots of experience.  But we don\’t automatically know most of it, because it\’s not innate for us.

When I\’m not at home alone, I spend most of my time \”acting neurotypical.\”  Because neurotypical people tend to expect certain things, like eye contact, I have to make a lot of efforts to make sure I provide those things.  If I don\’t, I tend to get labeled \”rude\” or \”weird\” and avoided or called out.  So I\’m constantly needing to keep details like eye contact, facial expressions, small talk, and rules of politeness in mind when I go out.  If this sounds exhausting, that\’s because it absolutely is. 

Essentially, I have a bargain with the world at large: I act the way your arbitrary social rules expect me to, and you treat me like a human being.  I like being treated like a human being, and unfortunately this is, thus far, the only (mostly) predictable method I have of being treated like a human being.

But sometimes, I slip up in my \”neurotypical act\” or am exhausted and can\’t hold that act together, or I think it\’s safe to be a little more myself, and it bites me in the butt.

Then someone ticked me off, again

Sadly, when I slip up in my pretending to be neurotypical, the reaction I get is usually poor.  Essentially, I get a politer version of \”how dare you be different than me?!\”  I get weird looks.  I don\’t get invited to events.  I stop being counted as human.  It becomes okay to be rude to me, or to ignore me.  I get belittling comments, or polite suggestions that I change the way I am so I don\’t upset people.  
The kinds of things that can trigger those reactions are anything from not looking at a person when they\’re talking, to my choice of relaxational activities at the end of the day, to expressing an dissimilar opinion about a subject under discussion. 
So recently, this happened sort of thing happened.  Again.  I\’m not perfect, I can\’t be what I\’m not all the time.  And there was politely veiled criticism conveyed to me regarding my actions.  And unfortunately, it\’s not a situation I can shrug off and expect to never have happen again. Also, it blindsided me because the person in question was so quiet and polite about it that I had no idea I was upsetting them.  
Usually, I just get frustrated for awhile about these sorts of things, then sigh, shrug, and try to do better next time.  But occasionally the unfairness of the situation gets to me, and I get angry.  I started out with calling them a \”petty, small-minded, egotistical, thoughtless, neurotypical jerk,\” and continued in that vein for a bit before realizing that \”neurotypical\” is really the wrong descriptor for the kind of mentality.  
Neurotypical, you see, refers only to the brain structure and development of a person, not what they choose to do with it.  All neurotypical people are not petty, small-minded, egotistical, thoughtless jerks, even when it comes to neurodiversity or other innate traits, like skin color.  There is a great plethora of examples of good, thoughtful, supportive neurotypical people on this very blog: many of the authors of the books I\’ve reviewed here, for example.
Therefore I needed new words.  I needed a word for a mentality that actively opposes neurodiversity, and a word for people that merely expect neurodiverse people to act \”normal\” in their presence.  Finally, I needed a word for discriminationatory acts based on those mentalities.  

Therefore, meet the words…

Neurorestrictive: the belief that everyone\’s brains, thoughts, and behaviors should meet your expectations of those things, and the expectation that if they aren\’t, the neurodiverse person will restrict themselves to acting that way while in their presence.  This sort of person would invite a neurodiverse person to a party, but be upset if they needed some quiet time in a separate room, or needed to leave early, or didn\’t want to socialize the whole time.

Neuroconfining: the belief that neurodiverse people should not exist (and should therefore be cured / \”corrected until they act normal\” / confined away from \”normal\” people / etc.) and actively oppose any form of neurodiversity.  This sort of person person wouldn\’t invite a neurodiverse person to a party, and likely believes neurodiverse people shouldn\’t be invited to parties at all. 
Neurodiscrimination: discrimination against a person or group of people based on differences in their brains, thoughts, actions, and behaviors.  The act of assuming a neurodiverse person should act \”normal\” at parties, or choosing not to invite a neurodiverse person to a party because they\’re neurodiverse. 
The person that inspired the hour rant and this several hour post, therefore, committed neurodiscrimination against me by assuming I would do everything their way and being hurt, angry, and passive-aggressive when I didn\’t.  
While they have not, in the past, shown signs of being neurorestrictive, this action has clearly indicated that they are, at least in some situations.  I must keep a better eye on them and my actions around them or they\’ll avoid me or dislike me more in the future. I don\’t think they\’re neuroconfining by nature, since they have, in the past, listened to me talk about my life without making judgements like this.
And perhaps I\’ll see if I can\’t ease them, gently, into being a bit more open-minded about autism and more adult about conflicts in the future.  Y\’know, so I don\’t have to spend four hours of an already busy day trying to invent words to properly express why I\’m so livid.

Boomerang Memories: Artifacts of Depression

Posted on by Realistic Autistic
The vast majority of my life, thus far, has been dogged by the frustrating ailment we call depression.  I have what psychology calls \”dysthymia\” or basically, low grade, long-lasting depression.  Unlike major depression, which usually only lasts weeks to a year or two, dysthymia can be with you for your whole life.  Sort of like having chronic pain, it won\’t ruin your life or make you wish you were dead, but it\’ll sure put a damper on basically everything you do. 

So in the process of living this particular difficulty, and learning about it and other conditions in psychology, I\’ve become rather analytical about the whole thing, and I thought I\’d share a particular feature of depression that\’s been making my life more difficult in the last few weeks. 

I\’m calling them boomerang memories, but I\’m sure there\’s a technical term for it: when your brain reaches back into the past and drags forth an embarrassing, saddening, or hurtful memory.  So if you, like many people, have had dozens of embarrassing moments in your lifetime, you can expect to review the worst of them, regularly.  Tripped over a flat surface in the lunchroom and everyone laughed at you?  Definitely seeing that again, as clearly as if it had just happened again.  Your crush in middle school turned you down?  Going to be reliving that again, without the benefit of the years to soften the emotional blow.  Said something obviously stupid when you were talking to a someone whose opinion you value?  Hope you don\’t mind wincing about that again.  Like a toy boomerang, these unpleasant memories come back, but unlike the boomerang, the memories always hit you in the face. 

Taken one at a time, and infrequently, these sorts of memories are the kind of thing you\’d shrug off.  They\’re downers, they\’re bad for your self-esteem, but they\’re probably not going to ruin your whole day.  Everyone remembers bad things sometimes.  The thing with depression is that these things don\’t politely visit you once a week and then stay away.  Instead, they may opt to visit you every hour.  Or every 15 minutes. 

You\’ll be thinking about what to have for dinner today, or what task you should focus on next, and suddenly you\’ll be remembering a joke you told that not only fell flat, but actually hurt someone you were trying to entertain.  BAM, your train of thought is derailed, and now you\’re sad or frustrated or angry. 

Now, at this point, normal people just wince, shrug, and reroute their train of thoughts back to dinner or work.  You wasted a few seconds remembering this unpleasant thing, but now you\’re back to the matter at hand.  Unfortunately, depression doesn\’t work like that.  Depression, instead, makes that thought process sticky.  Like bugs on flypaper, your brain gets trapped and then stuck on that bad memory.  You live it several times instead of once, and think about what things you should have done instead.  Psychology calls this \”perseverating.\”

Shaking yourself loose from this stickiness is an effort for people that are depressed.  I, personally, have to tell myself, \”You know what, this is a thing that happened, and that\’s okay.  It is long past, and no longer matters.  Let\’s get back to what we were doing.\”   Unfortunately, that is not a magical chant, and does not always work.  Several repetitions or interruptions to the sticky train of thought can be necessary, and this can waste a lot of time and energy. 

It\’s kind of like having your own personal deconstructive critic inside your skull.  No one else can fight it for you, or tell it to buzz off.  Your personal anti-cheerleader has full audio-video access to your brain.  And unfortunately, you have no power to permanently drive off or otherwise silence it.  You can only shoo it away for a time, knowing it will be back.

All of what I\’ve said so far is, as I see it, solid reliable fact.  What I\’m going to say next is not, but merely personal musings, so please consider them or pooh-pooh them away as you please. 

The origin of this personal anti-cheerleader is up for debate, so far as I can tell.  As a person raised in a rationalist, scientific culture, I\’m inclined to think of depression and this particular facet of it as an artifact of a malfunctioning brain.  That\’s what medical science has, thus far, told us.  Depression is caused by problems with brain chemicals and the brain\’s use thereof, and is therefore an internal problem. 

But my description, \”personal anti-cheerleader\” also reminds me of C. S. Lewis\’ writings on devils (see The Screwtape Letters).  The popular image of the angel on one shoulder and the devil on the other, both whispering what someone should do, would almost apply here, minus the angel.  Boomerang memories would then be the devil\’s purview, brought up again and again to wear you down, make you sad and crabby, and overall distracted from your life and what you should be doing with it.

It would make sense to me if the old descriptions of mental illness, ie: demon possession, had some basis in the truth.  The fault of every age and every era is assuming they know best, and that the previous generations knew nothing of value.  Certainly, we know more today than ever before, but much of it, we\’ll find in 20 years, is wrong.  I don\’t particularly think my autism can be attributed to demons, but my anxiety and depression?  Maybe partly.  I\’ll have to reread that book and some of the others that C. S. Lewis wrote. 

That said, medical science has apparently discovered the physical location of depression in the brain as of late last year, so perhaps, soon, our methods of treating depression will be less, ah… shots in the dark.  And perhaps my musing on demons and depression are entirely inaccurate.  Which is fine, I\’m certainly no brilliant religious scholar, philosopher, or world-mover. 

In any case, I hope this explains boomerang memories a bit better for those of you that have them, and those that don\’t.  It\’s hard to get a good understanding of depression when you don\’t have it, or so I\’m told, and those of us that do have depression benefit from the understanding.  

Autism in the next Presidency: a look at the 2016 election politics

Posted on by Realistic Autistic
Today I’m going to trawl through the major Presidential candidates’ websites, searching for each candidate’s viewpoint on disability.  Wish me luck. 

As an American citizen, it’s my duty to be informed, at least in brief, about the current issues.  As an autistic American citizen, disability issues are of some concern to me, not simply because they might impact me but because they absolutely will impact the parents, educators, professionals, and fellow autistic people I serve.  Up ’til now, I’ve mainly been focused on my preferred political party, but for the sake of this article, I’ll also take a look at the websites and stated policies of the other party candidates, and do my best to provide that information in an unbiased way.  I will also let you know my bias, because while I’m going to try to be objective, I’m only human. 

This coming election is… concerning to me.  We have two serious political outliers (at least to today’s politics: Trump and Sanders), and a few closer-to-middle-ground candidates.  The Republican party has a rash of candidates, which doesn’t bode well for party solidarity when election time rolls around.  More than that, though, the Republican party has kind of gone off the rails from what I understand it used to be.

The Difference Between Parties
So far as I can tell, the major difference between the Democrat and Republican parties is philosophical.  Democrats believe in supporting the people first: using social programs to improve the lives of the poor and the disabled, and getting as many people jobs as possible, so that they can work and earn their living.  By strengthening the people, Democrats (so far as I can tell) believe the economy and the country itself will be strengthened.  Republicans, on the other hand, believe in supporting businesses.  Businesses employ people; they’re the primary way for people to support themselves and their loved ones.  Prop up businesses, and you prop up the economy, which benefits  everyone.  Or, in very brief: “trickle-up” versus “trickle-down” economic theory.

My Bias
US policy, so far as I can tell, has been mainly of the trickle-down, or businesses first, mentality.  This has not, in my opinion, done a lot for the disabled community, the elderly, and the poor.  So as you can guess, I favor the Democrat party.  I think trickle-down theory has had its chance, and it just doesn’t work for the poor, the disabled, and the elderly.  The biggest companies of the US today are moving themselves right off American soil, evading taxes, and treating their workers like machines rather than people.  People right out of high school and college are having to take minimum wage jobs to pay off their staggeringly high education debts or try to support themselves and their families.  Because those are the only jobs available.  They’re not being given anything close to adequate health care despite President Obama’s best efforts.  This, in my opinion, is not okay.

Candidates Selected
We’re only two primaries in, so my choices of Republican candidates may not be flawless, but I opted to take a look at Trump, Rubio, and Cruz based on their numbers of delegates won thus far.  There are only two Democratic candidates left, so I won’t need to prune them.  I’ll be taking each candidate’s website and information at face value, since further speculation on my part would either be biased or uneducated (or both).


Ted Cruz
I can’t find anything specifically from his site about disabilities, but I did find something on healthcare.  According to his website, he favors repealing Obamacare post-haste.  That would include the expanded Medicaid programs that presently allow several of my friends and acquaintances to actually have healthcare.  Their jobs don’t provide it, and private plans are far outside their budgets.  Cruz, it seems, would rather expand the private insurance market across state lines and somehow try to make private insurance affordable.  Having scouted out my own insurance plans recently, I’m not going to hold my breath, but anything is possible, I suppose.

He seems to be against same-sex marriage, pro-life, and anti-Planned Parenthood.  Each of those puts several of my friends and acquaintances out in the cold.  Cruz’ strongest emphasis seems to be on the importance of the family.  So a life with him as President might involve strengthening the nuclear family as a whole.  The problem, for a lot of disabled people, is that our parents won’t live forever.  If there’s a sibling able to take care of the disabled person, that’s one thing, but that’s not always the case.  It seems like the autistic community and other communities would be left to fend for themselves under Cruz. 

Marco Rubio
Things might be a little less bleak under Rubio.  He mentions strengthening Medicare, on account of his mother and other senior citizens.  Like Cruz, he wants to repeal Obamacare.  Unlike Cruz, his website says every American should receive a refundable tax credit that can be used to purchase insurance.  If that happened, my friends and I might be able to afford private health care.

Rubio also targets education debt.  Rather than continue on with the current state of affairs, he proposes a single, income-based repayment method for federal student loans.  That won’t help my fiance Chris, since some of his loans aren’t federal student loans, but it might help future students.  Rubio also says he wants to increase the hiring of non-degree holding workers, which would be excellent news for several of my friends who haven’t made it through college.

Finally, Rubio seems to be promoting a tax credit of $2,500 per child.  I’m not sure how much an extra $2,500 would help a working poor family, but it’s certainly better than nothing. 

Hilary Clinton
Taking a break from the Republican candidates for a moment, let’s look at former Senator, Secretary of State, and First Lady Clinton.  Unsurprisingly for a Democrat, she specifically calls out the disabled population as one that matters.  She seems to focus on the Americans with Disabilities Act (ADA) and riding the good that law did.  She doesn’t promise any specifics about how she’s going to do that, but I haven’t followed every debate, so perhaps she’s expanded on that somewhere.  Her site is extensive on her various stances on issues beyond that. 

Clinton insists higher education is important to our country, and wants to refinance existing student loan debt, make public colleges tuition and books free, and institute some kind of monitoring system for colleges and their costs.  Students will need to work 10 hours/week in addition to their studies.  I’m all for reduced tuition, but in retrospect I’m not sure I could have pulled off a 10 hour/week job in addition to my classes.  Some semesters I barely pulled off the finals and final projects in time.  Adding transportation time and the extra time spent working might have been fatal to my graduation.  Granted, there are some jobs available right on campuses, but there are only so many of those, and I don’t interview well.  In any case, making it easier to get higher education is definitely a good thing for the people I serve.  State colleges, with their seas of people and large class sizes, are not always the best environments for people on the autism spectrum.  But I’d take that over no possibility of college at all. 

Clinton defends Obamacare.  She notes that out-of-pocket costs, like copays and deductibles, are rising, and says she’ll work against that trend.  While I’m not entirely crazy about every aspect of Obamacare, the program itself does benefit myself and other Americans like me. 

Donald Trump
I would, in all honestly, much rather have avoided even mentioning Trump.  Unfortunately for my sanity, he’s got the most delegates right now, which means I really shouldn’t ignore him.  His website is pretty sparse on his positions, but I’ll do my best to find what applies.

His tax plan has some applications for the poorer and disabled communities.  According to his site, anyone singly earning less than $25,000 per year or any couple earning less than $50,000 a year simply doesn’t pay income taxes.  That covers a number of my friends on and off the autism spectrum, so that’s a help, even if it doesn’t directly add anything to the social programs.

Trump’s site also talks about stopping countries from sending their jobs overseas.  While that won’t directly have an impact on the autistic unemployment rate, the availability of more jobs in the US would be good.

Beyond that I have absolutely nothing positive to say about Trump.  I, personally, believe he is the worst possible candidate for President.  He’s repeatedly demonstrated extremely poor behavior (sexism, bigotry, egotism) and routinely spouts vast quantities of lies.  I do not want to live in a US with him as President, because I see him as a bigoted, self-righteous loose cannon that would just as soon mock me and ship my neighbors out of the country as help me achieve my potential as a person. 

Bernie Sanders
So now we come to the other end of the political spectrum.  Sanders’ site is even more extensive on his viewpoints than Clinton’s, which is an achievement.

Sanders, of all the candidates, strikes me as the most thoughtful toward the autism community and other minorities.  There’s a page with a number of specifics on his website.  He wants to expand the educational opportunities for adults with disabilities by further funding an existing law (IDEA) and expanding on vocational education programs.  He also wants to increase the existence of resource centers for aging and adult disabled people.  This is not one of his more well-fleshed out policies (though more fleshed out than Clinton’s), but it does have specific ideas that sound good in theory. 

Like Clinton, Sanders wants to make public college tuition free.  Also like Clinton, Sanders would like to let people refinances their student loans.  I’ve covered why this is generally a good idea for people like myself, and people like my fiance.

Senator Sanders is also pushing the $15/hr minimum wage.  I suspect this policy seems ridiculous to older voters, who recall minimum wage as a thing to keep our teenagers from being taken advantage of.  Unfortunately, as I mentioned in the intro, that is no longer accurate.  Minimum wage, with both parents working, is now what supports many of our working poor.  A higher minimum wage would hopefully do good things for letting myself and my friends on the spectrum support ourselves.

On healthcare, Sanders’ page is a series of quotes and infographics.  But it summarizes to that Obamacare isn’t working well enough, and a single-payer system would be better.  So he wants to expand Medicare to everyone.  I personally don’t know how well that would work, but apparently it worked pretty well for Britain and Canada.  I’d just be happy if I didn’t have to keep applying every year for varying benefits and worrying about whether I’ll be able to pay for it.

Finally, one of the Senator’s biggest issues is the wealth disparity in the US.  His numbers aren’t always the most accurate, but the general concepts are unfortunately true enough.  In the US today, the rich become richer and the poor become poorer.  The statistics, unfortunately, back that up. For the autism community, insurances often don’t pay for therapies, treatments, or social groups that we badly need.  That means we pay for those out of our own (shallow, since most of us aren’t employed) pockets, or don’t go at all.  That’s not okay.  We need understanding and help to be productive members of society.

In The End
Of all the candidates I’ve reviewed, I’d feel the most comfortable with the future under Senator Sanders.  I can’t honestly say I feel any of the Republican candidates care much for the plight of the disabled and autistic communities, based on their websites and espoused ideals.  This is in distressing contrast to the Christian faith they claim, where Jesus specifically called his followers to feed and clothe the poor, and care for the sick and injured.

I think either Clinton or Sanders would probably do the job okay, but Sanders seems far more focused on uplifting and empowering the small people, like myself.  The fact that he goes into specific ideas on his website, rather than broader, ambiguous statements, helps solidify that difference in my mind.

Whatever your particular political bent, though, please do vote in your primaries and the general election.  America needs you. 

Losing a (metaphorical) arm

Posted on by Realistic Autistic
So last weekend I had a rather unfortunate experience.  My tablet, which I bring everywhere with me, met its demise to a tile floor and a case design error.  Now, most people don’t have a tablet, they have a smartphone or a laptop.  I find smartphones’ screens too small, and I haven’t had the money to spare for a laptop. I bought this tablet initially for my now-deceased chainmail business- turns out with a tablet and a little plugin, you can accept credit cards pretty much anywhere there’s internet.

To help justify my purchase (which was expensive, even though it was refurbished and not the latest and greatest), I set about making my tablet into a Swiss Army Knife.  I migrated my eBook library onto it and read every night. I got myself apps for both my banks, another to track my sales in business, and still another to easily store all my business’ data.  I installed a calendar app, several radio apps and a flashlight app. A meditation app, checklist app, food tracking app, and email apps. I customized the directions apps and set them to a cell phone’s data plan so I would never be lost.  I even managed to set up a Google Voice number to act as a phone, after my dumbphone died and I realized I didn’t really like having one anyway.

And that’s just the stuff I used regularly.  I brought it everywhere, scribbling notes and doodles on it, asking the Internet any question I could think of (often hours for stores and restaurants), and reading book after book on it.  For four years.  It was always there, keeping me in tune with my life, providing my appointments and my music and the Internet.  Until it was gone. The case I’d bought to shield it from damage didn’t have any protection from falling screen-first on tile floor.

The screen was completely shattered.  I took it to the maker’s store, and they basically told me: “Yeah, that’s so old we can’t help you.”  In addition, the design of the tablet was such that it really wasn’t a DIY repair.  And the folks that could repair it, would charge about half the tablet’s original cost. If not more. Not really feasible.

At the time of the break, after the initial crying fit, I really just felt numb. But I also had to try not to cry, because I was in a public place and while some people might understand crying over a broken tablet, most, I suspect, wouldn’t.  But it was rather like I’d just lost an arm, or had part of my brain removed.  I no longer had my library, my calendar, my phone numbers, my directions, my music, and all the rest. Major parts of my life were suddenly inaccessible, and without them I was lost.

To his credit, Chris (my boyfriend) understood immediately.  I’m actually stealing his broken arm comparison for this entry. Other people, I feel, would have said something along the lines of, “oh, that’s too bad. Do you really need another one?”  Chris started talking about getting it fixed or replaced, immediately.  When most of the shock wore off, I asked him about that. He remarked that it was obvious to him. I read off it every night. I brought it with me everywhere.  I used it multiple times a day, for all manner of things.  Obviously it was important to me.  And so he offered to help me replace it.

It took quite a bit of research, but eventually we got it narrowed down to two tablets: the iPad Air 2 or the Samsung Galaxy Tab S.  For philosophical reasons, I chose the Samsung tablet. (Apple does a lot of things well, but their philosophy does not promote tech-savviness. I think having the ability to tweak important parts of your electronics is essential to that.) With work stretching my hours for all they’re worth, I’ll be able to afford the replacement in a few weeks’ time. But we got it as soon as possible, because I fortunately do not live paycheck to paycheck.

Now comes the rehabilitation. Because my previous tablet was so old and from a different maker, I have to manually migrate the music and books. It’s a lengthy process.  The music alone is taking days. The books… I have yet to find a good reading app.  And while most of my apps were available for download on the new tablet, some important ones weren’t.  So now I need to find replacements.  All in addition to learning to use the new interface.

I’m very fortunate that I can replace my tablet at all, of course.  I would probably be able to learn to live without all that, but with my memory not being as good as it used to be pre-LENS, I suspect my relationships would suffer.  Along with my sanity.