This year, as last year (technically last January), I went to Washington DC to serve as a consumer reviewer for the autism research program. I was thankfully less tired this year than I was last year, and the trip was less rife with difficulties. There was even a smaller workload this time around, which was a kindness since most of the work happened in October (a busy month for me).
I was pleased to be called on to serve again, and was pleasantly surprised to see many of the same faces for other consumer reviewers and scientists. Shockingly, some of them remembered me too. They even remembered me positively, which is good because I don\’t remember being terribly positive at the time. Mostly I remember being grumpy and overwhelmed and tired.
Anyway, there was less socialization this year, which was too bad, but I did still get to chat with a few scientists and handed out a few cards. I have this bad habit of educating people I rub elbows with, but considering the guy running the panel told me he thought I was MVP reviewer, I suppose I must be doing okay.
Here\’s the official press release:
SCIENTIFIC PEER REVIEW OF THE AUTISM RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE
The Peer Reviewed Autism Research Program (ARP) consumer advocate Sarah Frisch recently participated in the evaluation of research applications submitted to the ARP sponsored by the Department of Defense. Sarah was nominated for participation in the program by Autism Support of Kent County in Grand Rapids, MI. As a consumer reviewer, she was a full voting member, (along with prominent scientists) at meetings to help determine how the $7.5 million appropriated by Congress for Fiscal Year 2018 will be spent on ARP.
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Sarah said, “It’s challenging to represent so many different people, from teachers to parents to autistic children and adults of all kinds, but rewarding to know our viewpoints matter and are taken into account. It\’s also great to meet so many people that share my passion for bettering all of our lives.”
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY07. Colonel Stephen J. Dalal, Director of the Congressionally Directed Medical Research Programs, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”
Scientists applying propose to conduct innovative research focusing on improving the lives of individuals with autism spectrum disorders. The ARP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.
Hello from my house, where I have safely returned after the 12+ hour drive from my inlaws\’ house in Connecticut. Thanksgiving went really well, to the point where I think it\’s in the running for \”best inlaw visit ever.\” The other major contender for that title would be my very first visit, where I was fairly cheerful because I was running on the \”new relationship\” high. I dunno if \”cheerful\” describes my demeanor this time, but my general attitude reminded me of my brother a decade back, save that perhaps I was a mite more talkative. I\’m not sure if that\’s a genetic thing or what, because I wasn\’t trying to replicate his particular combination of polite, thoughtful, and caring. It\’s not the first time I\’ve noticed the similarities on my better days, so perhaps this is how I would normally act if I wasn\’t slightly depressed most days. Regardless, I\’m very pleased that I handled the transitions between home, Washington DC, and Connecticut so well. My supplements arriving in time definitely contributed to the success, I\’m sure. The visit did burn through most of my blog buffer, which is somewhat to be expected, but I don\’t feel like the situation is dire or impossible. I simply need to make sure to spend a lot of time in the next few weeks rebuilding it, before the December holidays strike. The trip back from CT was probably one of the nicest such trips I\’ve ever made. There\’s only so pleasant a 12+ hour trip can be, but having a second driver to switch off with helps. Music helps. This year we actually added a third kind of boredom-reducer, a podcast, to the mix. It wasn\’t my usual comedy joke advice podcast that I am still working through (it\’s been at least half a year, probably more, of me just listening to this one podcast to try to catch up). Instead, it was a theatrical Dungeons and Dragons (D&D) game podcast. Basically, a GM runs a D&D campaign, records it, and then adds sound effects and music and such to make the game more immersive and entertaining to listen to. Since my spouse and I both have a background in D&D, it was just fun to hear all the creative ideas the players and dungeon master came up with. Since D&D is ultimately a cooperative storytelling experience, it\’s really cool to see what other people dream up, and it can inspire ideas of your own. I\’m still pretty done with personally playing D&D, but I don\’t mind hearing about others\’ fun experiences, and this is kind of an exaggerated version of that. It\’s also something my spouse and I can do together, which he values very much.
Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations. Today\’s article deals with gastro-intestinal (GI) disorders, which are so commonly found alongside autism that some parents and professionals insist they\’re part of autism. Regardless of whether you believe that (I don\’t), GI disorders do affect at least 25% of autistic people, and that number may be a great deal higher than our numbers show.
The reasons are manifold. First, for autistic people who are nonverbal or have limited communication, it can be really difficult to convey that you\’re in pain, or what kind of pain you\’re experiencing, or that the pain is a regular problem. Second, if you\’ve had pain in a certain area for as long as you can remember, or pain in that area is a very commonplace occurrence, it may not occur to you to bring it up. I suffered constipation for much of my childhood, and had no idea it wasn\’t normal. The most that was said on the subject was teaching me how to use a plunger to unblock the toilet pipes after I was done.
Third, even if you\’re capable of conveying the information and recognize the situation as abnormal or relevant, talking about your bathrooming isn\’t really a normal or polite subject, so it\’s not necessarily addressed. Fourth, assuming all these previous conditions are met, the autistic person may not be able to pinpoint exactly where it hurts when asked. The article quite rightly points out that sensory processing disabilities exist, and can really get in the way of diagnosing a potential problem. When asked to locate the pain, a person might point to their stomach rather than their colon, which muddles the issue quite effectively.
The article also makes the very excellent point that GI problems can lead directly to behavior problems. This is a surprising revelation to some people, but it shouldn\’t be. At least, not when you think about people who live with chronic pain. In my experience, such people (including me) tend to be get frustrated more quickly, have less patience for things overall, and can be both aggressive and angry in the wrong circumstances. Parents sometimes mistake these poor behaviors for symptoms of autism… but while autism can\’t be cured, GI problems can be.
With all this in mind, the researchers developed a short questionnaire to try to simplify the process. At only 17 questions, it\’s not at all bad, and could be easily used in a doctor\’s office when a parent has concerns about their child\’s behavior. And with an accuracy rate of 84%, it\’s significant enough to reasonably send a parent off to a GI specialist.
Hopefully their second study will come back with similar results, and this questionnaire can be adopted widely. A lot of kids and adults could be spared a lot of suffering as a result.
This is a short blurb about a documentary called Intelligent Lives, the subject of which is people with low IQ. This is sometimes referring to as intellectual disability, or ID. Autistic people can have IDs as well as other conditions like depression and anxiety, and in fact, one of the subjects of the documentary is autistic.
I wanted to take a minute here to talk about IQ overall. In the educational setting, IQ measures intelligence. To the general public, that\’s the beginning and the end of it. A high IQ means you\’re smart and more likely to succeed, and a low IQ means you\’re not, and are less likely to succeed.
Now, I have a psychology degree, so I learned about IQ in more depth than most people do. IQ, or Intelligence Quotient, is a measure of how well any given person learns in an educational setting, especially academic subjects. That\’s all it does.
Does that seem like the equivalent of overall intelligence? If it does, let me explain a bit more. Academic subjects, like math, writing, history, and literature, are only a small portion of what a person draws on to be successful in life. In addition to these, there is also:
Interpersonal intelligence: how well you sense others\’ emotions and motives, how well you handle disagreements, and how well you can manage and direct people into a working unit. Autistic people, myself included, often struggle with this form of intelligence. Because we\’re so different from others, it\’s not as intuitive to understand people.
Intrapersonal intelligence: how well you know yourself, your reactions, your motives, your strengths, and your weaknesses. This skill is important for taking care of yourself.
Musical intelligence: how well you can keep a beat going, identify specific sounds, and even how good your sense of pitch is. Perfect pitch is fairly rare in Western society, but approximate pitch (which is what I have) is more common. Musicians usually score highly in this, for obvious reasons.
Kinesthetic intelligence: how well you can coordinate your limbs and fine motor movements. Athletes tend to excel at this, but so do surgeons and gamers.
Existential intelligence: your grasp of what life is about, why we live, and why we die. This tends to come up in religious settings or philosophical ones.
Spatial intelligence: how well you can visualize things in 3D. Architects, sculptors, and graphic designers all tend to excel at this.
Debatably, there are even more kinds than these. The point being, though, is that IQ simply isn\’t a catch-all measure of what a person is capable of. There are all too many high-IQ autistic people that succeed in academia, only to graduate and be unable to keep a job. Lacking social skills, not understanding how to handle other people, and not having sufficient functional self-care skills (knowing how to do the laundry, keep yourself clean, and take care of a living space, for example), can make it impossible to handle the demands of adult life. At least one piece of research agrees with me.
I count myself as a lesser example of exactly this phenomenon. I wasn\’t supremely ill-prepared, and I\’m not brilliantly high-IQ, either. But college was definitely a difficult experience. Even though it eased me into taking care of myself, it was still extremely challenging to manage attending all my classes, keeping my area clean, handling personal hygiene, and still remembering to eat and do homework. I definitely let any non-mandatory social experiences lapse by the wayside for the first couple years, and often forgot to do all of my personal hygiene.
My grouchy stomach usually ensured I ate, at least. Even if the food often wasn\’t very good. I may have spent most of my 3rd and 4th years in college eating mac\’n\’cheese for dinner, every night. And my lunch was often nearly the same thing each day, although I did at least try to make that meal balanced.
But in the end, I tried various full time jobs using my education and detail-oriented skills, and succeeded in keeping none of them. The 9-5 schedule simply strangled my energy reserves until it ground me down to misery. My moderately high IQ didn\’t help in the slightest for the demands of the real world.
This documentary will show, in ways mere words can\’t express, that having a low IQ need not bar you from having a successful life, and doesn\’t reduce your value as a person. I\’m looking forward to attending the screening of it in my area. The website for the documentary is here. Check it out, and see if there will be a showing in your area.
This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.
Hello from Connecticut, where my inlaws live, and where I\’m currently visiting to celebrate Thanksgiving with them. This year, Chris\’ family gets us for Thanksgiving, and my family gets us for Christmas. Next year it\’ll be the opposite.
I survived the first half of my trip! The expedition to Washington DC for the Autism Research program was a success. They might even invite me back next year, it remains to be seen. I may have slightly made an ass of myself last year (I was less than impressed with all the genetics and mouse models when autistic people are literally dying from lack of support services), but not as much this year. I suppose that probably bodes well for the future. I can only be called to serve so many times, but they do seem to appreciate having me around.
Due to nondisclosure forms, I don\’t get to talk about what I reviewed, but I can say I was a lot happier with this year\’s crop of applications than I was with last year\’s. It was also cool to see some of the same scientists and other consumer reviewers as last year, which was helpful because it\’s really stressful to get shoved into a room with a bunch of strangers and be expected to interact with them for hours. They do make things easier by giving everyone nametags, but even so. I definitely didn\’t remember pretty much anyone\’s name, but due to the nametags, that didn\’t matter so much.
Now I get to work on surviving part 2 of my trip, which includes the added bonus difficulty of not having my supplements every day. I was an enormous derp and miscounted how many days the trip would be. So I\’m going to be having my pills every other day, and hoping the ones I ordered to be shipped here will come in time. \”Less than ideal\” is definitely an understatement.
It should be okay… the pills should arrive by the end of today at some point. I just really want them sooner because the house I\’m staying in is quite old by US standards (nearly 250 years old), and thus quite dusty and possibly molding or mildewing somewhere not easily accessible to humans. I get fuzzy-headed, grouchy, sad, and anxious when I\’m here. The pills offset that a great deal, though not entirely.
I do still have the generous offerings Chris\’ family provides to help offset the house as well: an air purifier, a space heater to help with the open window in the room, an electric blanket, and four of those weird Himalayan salt lamps. I have absolutely no idea if the lattermost do anything, but the light they shed is nice, so I\’m not complaining. I might get one myself and use it as a nightlight, regardless of any claimed positive health effects. The light they shed is orangeish pink, rather than any kind of blue or white.
Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations. Today\’s article helps to clear up a misunderstanding about autism and mental illnesses like depression and anxiety. Autism, after all, often comes with depressive disorders and anxiety disorders, such as bipolar disorder, major depression, obsessive-compulsive disorder, and panic attacks. These things can be so well-intertwined with the symptoms of autism, that people equate the conditions. Having autism, to some people, includes having depression and anxiety. While this is generally accurate, statistically speaking (the statistics vary, but 80% is often quoted), it\’s not accurate in the absolute sense. Autism, as this study shows, does not innately include depression and anxiety. Instead, the cause of those conditions is social stress, and the stigma people attach to our lives. In much plainer words: we aren\’t broken (soul-less, rude, inhuman, un-teachable, hopeless, weirdo) people, but other people treat us like we are, and that\’s painful and hurtful. Over time, that stress and pain add up, and mental illness can result. The researchers describe this stress as \”minority stress,\” equating it with the kind of systematic stress that racial minorities suffer in the US. The good news about this is that we already know how minority stress can be handled: better education, integration, and better support systems. When people are exposed to autistic people young (or when they\’re older, if they\’re flexible-minded), they can learn to treat us like we\’re people instead of weirdos. Our eccentricities can be considered acceptable, even if they\’re not entirely understood. In short, the stigma can be undermined. With fewer people subscribing to that stigma, and treating us like second-class people, the mental health of all autistic people will improve. And that will mean fewer suicide victims.
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.
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.
This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.
Hello from somewhere near Chicago, probably still over a thousand feet up. At the time this posts, I\’ll likely be on an airplane and just about done with the first leg of my flight to Washington DC. I\’ll be taking a flight less than an hour afterwards, which will take me the rest of the way to not-quite-DC-proper for the Autism Research Program conference.
In preparation for all this, I spent the last week or so stressing over research applications and getting intensely annoyed by the scientific writing style. I\’ve been accused of swallowing a dictionary, or at least reading them for fun (untrue on both counts), but I have nothing on the people that write these research papers and applications.
I complained about this last year, with a lot more heat and frustration than I feel this year… but that might only be because there were fewer applications to review this year, and one of the applications was actually readable. Like, someone actually took the time to make sure the application wasn\’t full of jargon and didn\’t use run-on sentences. I was impressed, so I made sure to say so.
I don\’t get to talk about the contents of the applications I read, but I will say that this year I was assigned to a category that\’s much less theoretical than last year\’s. This category deals more with things like transition programs and concrete research studies on human subjects. So, far fewer mouse models. Which was definitely better for my sanity. I\’ll probably be much less sharp-tongued this year as a result, which is definitely a plus.
The other preparation I did for the trip is a lot more normal: packing. When my family would go on trips, my mother would always make and check off important items that needed to be handled before we locked up the house and left. I\’m not quite as organized as my mother, but I did cobble together a packing list years ago. So yesterday I dug it out and updated it some, as well as putting it on Google Drive for easy accessibility.
There\’s the usual stuff, like clothes, on there, but there\’s also things like \”power strip,\” \”bottle of NAC,\” and \”feminine products.\” I take a power strip with me when I travel, especially if it\’s by airplane, because you never know when you\’re going to find yourself at a place with no free spots in a power outlet. The bottle of NAC (N-Acetyl Cysteine) is in addition to the NAC in my regular pills. I react rather poorly to mold, mildew, etc, so it\’s wise to bring extra with me in case of less-than-perfectly-sanitary environments.
Packing my things has reminded me of how many specialized products I use these days. My deodorant is aluminum-free. My shampoo is color-safe, which means it uses much weaker cleaning chemicals than most shampoos. My toothpaste has baking soda in it. Even my feminine products are odd: a menstrual cup (rather than tampons) and cloth pads. I use pretty specific lip balms and lotions as well. That\’s not even touching my food, which tends to be vegetarian anytime I leave home, and my supplements and vitamins, which have to be very specific brands due to the lack of regulation on that market.
All this specialization makes me kind of sad, because it severely limits my options when shopping. I made all these choices for reasons, though. Some of them for health reasons (supplements, deodorant), some for moral reasons (feminine products, vegetarian diet), and some simply for pragmatic reasons (shampoo, toothpaste).
Speaking of specialization, I started on a new book series recently, which I\’ll probably finish during the travel tomorrow. It\’s called Chaos Seeds, and it seems to be self-published. It\’s a very specific type of fantasy I hadn\’t heard of until recently, called litRPG. It\’s what you get if you blend MMORPG (massively multiplayer online role playing game) rules, fantastical worlds, and heroes\’ journeys together. I found the style extremely difficult to accustom myself to (and the writing improves over time), but I think I\’ve mostly got a handle on it now. The author of the series is African-American, which is pretty cool.
Wish me luck with the trip! After I\’m done in DC, it\’s off to the inlaws\’ for Thanksgiving, where I\’ll hopefully be able to relax some and eat good food before going home again.
Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today\’s article addresses an up-and-coming issue in academia, special needs, and other circles: brain stimulation. John Elder Robison wrote about experiencing a particular type of brain stimulation, called transcranial magnetic stimulation, in his book Switched On, which I reviewed at one point. He noted improvement in what some people term \”autism symptoms\” after undergoing the treatment. Various types of brain stimulation have also been used to treat Parkinsons, depression, and anxiety. And naturally, if it can be used for a medical purpose, somebody\’s going to try it on healthy people and tout the results for improved academic and professional performance. I, personally, am treated with a particular type of brain stimulation called LENS. It\’s non-invasive, like most types of brain stimulation, and has no chemicals to pump into your bloodstream and potentially mess things up in your biology. I receive it once every two weeks. It\’s helped with my anxiety and depression, and possibly with organizational and self-management skills as well. I was paying less attention to those at the time I started the therapy, so it\’s hard to say for sure that it\’s helped. But a less anxious, depressed brain also probably performs better overall. It\’s a little alarming to me that people would A) decide brain stimulation should be administered to everyone, and B) that they\’re more likely to demand other people get \”fixed\” rather than fixing themselves. Though admittedly, if I was sure the treatment wouldn\’t damage our politicians, and was also sure it would increase their empathy and decision-making skills, I\’d probably opt to have them \”fixed\” also. Either way, it\’s a major question, and seems like one that\’s going to be relevant in the next decade or so. Some academic fields and areas are very competitive, and people with the means to do so may use brain stimulation in hopes of getting an edge on their competitors. I worry that these unregulated usages will lead to brain damage on a very major scale.
They may also pave the way for brain stimulation to be used in an insurance-covered medical setting, which would be good for autistic people and other sufferers of depression, anxiety, and related things.
realisticautistic 