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. Thankfully this week contained no doom headaches. It did contain a lot of bleh feelings, including dizziness and tiredness. I'm not really sure why, but later today I'll be seeing my doctor, so hopefully I can get some answers. It might be related to the fish oil I started taking? Or not. I really have no idea. I was so dizzy and faint in church on Sunday that I actually just stopped singing entirely, lest I actually pass out for the first time in my life. I've also just felt low energy and tired a lot. Definitely not ideal. I'd been having this issue, or something very like it, about a month ago. So not new, exactly. Perhaps the lightbox I mentioned a few weeks back will help. I was told to stop using that last time I saw my doctor, as I think I might've been overexposed to it. But it'll have been two weeks as of today, so maybe whatever was wrong is out of my system and I can start using it again. We'll see! I did manage to finish pet-sitting for my friends without damaging the bird or my furniture. Their bird is a fully-flighted Pionus parrot, and very used to being out of her cage more often than not. Because of this, we made some minor modifications to the lower level of my house to accommodate the visiting parrot, giving her the ability to fly safely around two of the rooms there. She was a handful, but I do like animals, and it's always an interesting experience to take care of others' animals. When I was younger, pet-sitting and volunteer experiences were my only ways of spending time with critters that weren't either my pet snake or gerbils. Slightly related to pets, but not entirely, I was linked to a video about loneliness recently. I don't think I'll make a Friday post about it, but considering the isolation that autistic people often experience (also autism parents), it seems highly relevant. It has some interesting things to say about the biological underpinnings of loneliness, and our current age. I rarely have the patience to sit through an online video, so the fact I did sit through this one and am even recommending it... definitely give it a watch.
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 vindicates any person who's ever had difficulty with eye contact. That includes many autistic people. It especially includes me. Turns out, the participants in this study couldn't tell if their conversation partners were looking at their eyes or at their mouths. This suggests, rather strongly, that demands for autistic people to make eye contact are unreasonable. We make themselves uncomfortable or dis-regulated in order to have a "respectful" conversation, but this is now shown to not be nearly so important as it's preached to be. Merely paying attention to a less pain-inducing part of the body makes for a sufficient amount of attention. This is excellent news to me. Any Applied Behavioral Analysis institutions should take note as well, and adjust their curriculum appropriately. It can be difficult to teach autistic children to make eye-to-eye contact, and apparently, this is wasted effort. I've mentioned in the past how uncomfortable eye contact makes me. It's like getting hit in the head with a baseball bat. The more familiar the face, the softer the swing of the bat. Still, it's not something I'd do on purpose... except that Western culture assumes you're lying, shifty, inattentive, untrustworthy, passive, and lack confidence if you don't make eye contact. So I've had to make myself. I assure you, it's no fun. The word choice for Western culture's opinion of eye contact is "reverence." I find this highly appropriate, given what I've had to go through lest I appear disrespectful. I have never experienced the "magical connection" when looking into a crush/significant other's eyes. The intro to the article mentions this, as does media and even some people I've met. I don't expect I ever will experience this, honestly. I look forward to trying this new mode of "eye contact" next time I'm out. Do you find yourself making use of this "eye contact" method unconsciously? I think I have, when I'm very tired or overwhelmed, but I just figured they would hopefully forgive me my apparent inattention. (Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
I turned 30 last year, chronologically speaking. (My actual age is debatable, but that's an entirely different discussion.) Societally speaking, that's supposed to mean I'm to have my life together. What exactly "having one's life together" means is also debatable, because the American dream of "college education, good job, house, car, spouse, kids, retirement," isn't really feasible in its entirety for most people in my generation, let alone most autistic people overall.
This is less an issue with autistic people as people, and more an issue of how many of those expectations are flatly unfair.
Starting with college education, since that's normally the first thing on this list people achieve, or don't. The promise here with a college education is that you'll become a well-rounded, well-equipped person who can then proceed more successfully in life.
First and most obviously to anyone of my generation, if you get a college education and aren't rich, you have to take out loans. Lots of loans. The days of being able to put yourself through college on a summer job or a part time job during the year ended in the 1980s.
Personally, I attempted to get a "good job" via an internship in my minor at the local library system. The internship went well enough, and led, after some time, to a "good job" at a local company... but due to miscommunications, depression, and massive anxiety attacks, I lost that job and pretty much never regained that path since. I worked several "underemployment" jobs doing secretarial work, but even those didn't last. My current job, as an advocate and consultant, pays only sporadically.
Regardless of how much you make and whether it uses the degree you went to college for, you are paying a mortgage on your life, effectively. On average, this debt will take 21 years to pay off.
That puts a bit of a damper on getting a house. To have a chance at a house, you need to have money for a down payment, which means having savings. Y'know, that thing you don't have because of student loans and medical bills. You also need to be able to save some money for property taxes, maintenance, and repairs, because stuff does like to break.
I have a house at this moment because my spouse has a "good job" that he likes, and I had the good fortune to be born to parents that were good about saving money in the long term, as well as a generous grandmother. Between our pitiful savings and the support of my relatives (who we are now paying back, and will be for years), we were able to make the down payment on a home in good repair and with sufficient space for us.
Unfortunately, my scenario is not the norm, even for neurotypical people. Mostly, people of my generation rent or live with our parents.
The latter option is particularly common for autistic people due to our higher support needs. Our parents are often our first advocates and know our needs best. Finding the supports we need to live our best lives is difficult and expensive. Usually there's only one route to receive those services: Medicaid. Otherwise known as the service that tends to routinely deny first time applicants*.
* I don't have a source for this, but seriously, just go to your local autism parent support group and ask. Most parents will be happy to complain to you about how stupid the system is on this facet and others.
The fun part (sarcasm) about Medicaid is that its income restrictions (meant to make sure only the poor and disadvantaged use it) haven't scaled with inflation over the years, so you also usually have to be nearly destitute to benefit from it. Remember that good job you wanted? Yeah, probably not happening if you need support services.
Even if you can get Medicaid, finding the right services is extremely challenging. A good supports coordinator is supposed to do that for you, but with the high turnover rate, good ones can be hard to find, and in some cases, your area may simply not have what you're looking for. If you need assistance moving around, taking care of things at home, or simply want something to do during the evenings, you're at the mercy of what's available to you. In rural areas and some suburban areas, that's not necessarily much.
Having a caris often essential to having a job and a social life, but like a house (on a lesser scale) it isn't necessarily affordable (cost of a car, and then insurance, maintenance, and repairs) or even feasible. With certain types of disabilities, such as visual difficulties or anxiety disorders, you can't even pass the tests or complete driver's ed training for your driver's license. In fact, fewer and fewer teens in general are getting their drivers licenses. Not surprising, then that only 1 in 3 autistic teens are successfully acquiring their licenses.
My first car was a gift from my grandmother, after she decided she was done driving herself around. Had my need for a car not coincided with that occurrence, I might not have had a car while I was in college. Trying to buy a car while in college would likely have been impossibly difficult for me, as I was struggling to simply survive college for the first couple years. And that's assuming the money was even there for such a purchase.
With less mobility (either due to lack of a car, or due to other transportation difficulties), it becomes harder to keep up a social life. Once out of school, the forced daily social interaction disappears, and we're left with online communities and little else. A church can offer some activities, as can supports derived through Medicaid or paid out of pocket.
Beyond that, though, the "easy" routes are gone, and you're left trawling for interest groups, visiting local events if you can (again, transportation!), and spending lots of time online. Finding a spouse in all of that is... difficult, to say the least. Autism is literally defined by having significant difficulties with social interactions and rules. And a managing relationship is basically that, but all the time, and with high emotional stakes. Autistic people tend to be fantastically loyal, which endears us to some people, but the strain of routine miscommunication can be difficult for both partners to bear in the long term.
For me, I didn't find my spouse, he found me. This was fortunate, because during most of school, I radiated "leave me alone" vibes. I'd learned that people tended to be cruel to me, and there weren't sufficient positive reasons to interact with people for me to bother. If you were decent to me, I was decent to you, and otherwise I tended to ignore you. This does not lend itself well to meeting new friends.
So I knew Chris from my second high school. He happened across me when I'd had enough of the day and was having a good cry on the library steps. I had a class with him, so he wasn't simply some stranger come to gawk at me. He proceeded to plop himself down and sit with me while I was miserable, asking after my wellbeing despite it being blatantly obvious I was not doing well and he was asking to get an unhappy earful.
We did not magically become close friends that day, but I remembered that incident, and so when he said hello again, a couple years later, I responded instead of ignoring him as I would most random messages on Facebook. This repeated about once a year during college, still with no romantic interest on either side. We worked at the same place one summer as well, and he was again friendly without expectations or demands of me. One year (2013, I think?), he messaged me again on Facebook, the conversation never really died after that.
This is all to underline that while the marriage we have now is definitely a partnership of equals, the actual groundwork was all by his efforts. Most autistic people don't get that lucky, and don't have persistent former acquaintances turn into friends, and then partners in life. Rather, the autistic person has to put in effort to find friends, through dating sites, church, interest groups, etc, and one of those may turn into a romantic partner, and perhaps into a life partner.
With all the debt and/or limited finances you've accrued, even if you find a good spouse, kids are not necessarily an option. Not everyone wants kids, first and foremost (which can break relationships, by the way!). But also the sheer expense makes it not feasible for some couples. In the US, the cost of raising a single child is around $245,000. That's not including a college education, and if you're still in debt paying for your own education, how are you supposed to afford a kid, and then help your kid with their own education?
For autistic people, there's worries about autism being genetic and passing it or any mental or physical illnesses you might have on to your kids. There's also the question of whether you can manage yourself and your life as well as a tiny defenseless human. Or whether the people in your life will allow you to do that, for some people with higher support needs. (Having high support needs doesn't mean you can't make a good father or mother, but it does make it more complicated.)
Kids or not, eventually you will grow old. People my age tend to have less saved aside than previous generations, due to the factors I listed above, and more. Retirement, therefore, is a bit of a pipe dream. Eventually, though, our bodies begin to fail us more and more, and work becomes more difficult. It's likely that millennials like myself will be expected to work to age 70, perhaps even longer, in order to qualify for Social Security. Health advancements might make that extra time more feasible for the general population.
But the autistic population is a bit of a different story. We already struggle to have work. Our life expectancies are much less than our peers. Mental illnesses, seizures, gastointestinal problems, even heart disease, all occur at higher rates for autistic people. Some estimates for an autistic lifespan are as high as the 50s, some are in the 30s. Compare that to the current general population's life expectancy (70), and you'll get the grim picture.
Obviously I won't know my personal life expectancy until I actually die, but I got good genes on one side of my family for longevity. Also, one of the main killers of autistic people, suicide, is not currently a factor. I have depression and anxiety due to the strain of not fitting in, but my depression is on the milder side, and the emotional pain is not so great and all-encompassing as to outweigh the knowledge of what my death would do to the people that care about me.
Retirement for autistic people won't be a simple affair. The popular conception of a lengthy vacation until your death is mostly a dream at this point. It's better for people overall to have some form of meaningful activity to do with their lives. Volunteer work, for example. That is most likely what my retirement, should I live long enough to have one, will look like.
I've deconstructed the "normal" expectations for a person's life in the US, and why they're unfair and unreasonable, especially for autistic people, it begs the question: what is reasonable? The answer varies by the person. This is why person-centered planning is important: finding out what the person wants in life, what their skills are, what their interests are, and what their needs are, is how you begin figuring out what kind of life to aim for. (For a really good parent-written book on this subject, read this post.)
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. I survived a truly awful headache on Monday. I call these tension headaches, though I'm not sure that's medically accurate. They're migraine-level suffering, and the longer I'm conscious with them, the more they hurt. They're kind of interesting in that they ramp up all my senses even further, meaning that all of those can be used to make my headache worse. Case in point, the smell of dinner. It wasn't a super spicy dinner, just a variation on forgotten roast with various vegetables and potatoes. But at least in my house, if you use the slow cooker to make food, the smell of it will permeate the house. The smell of dinner, then, was torture to me. It wasn't that it smelled bad, it was that the smell was so strong, it actually hurt me. When it came time to eat, I couldn't make myself even consider eating it, so I opted for leftovers. Cold leftovers, to dampen the strength of the smell and taste. Other things that were more painful included sunlight, which there was much of that day, reflecting off the snow. That was remarkably unhelpful, I must say. Also the loud music at the lunch place I visited, sound effects in my computer game and any form of touch or speech. So, basically most things in life caused me pain. As the pain increased, I began to feel sick to my stomach. Even an hour and a half nap did nothing to help. It was... really not a great day. I used to get these headaches about once or twice a month in college. I had no idea why, other than "maybe don't be so stressed out, dummy." But really, it's college. Stress comes with the territory. Same with adult life, really. The difference between now, when I rarely have these bewilderingly powerful headaches, and back then, when I had them on a regular basis, is chiropractic care. These headaches are, in me, directly caused by a mis-alignment of my neck vertebrae. I'm sure the stress, and my hunching and stressing the associated muscles, is what causes the misalignment... but there's less to be done about that. After the hour+ nap didn't work, I battled nausea to drive myself down to the chiropractor to get my neck fixed. This is sadly not a magical fix for the issue, but it does stop the pain from increasing by correcting the penultimate cause. After that, I got myself home, shut myself in the bedroom against the smell of dinner, took appropriate pain killer, and proceeded to basically do nothing useful for the rest of the day. Note: in case it wasn't obvious, this was because I literally couldn't do anything useful due to the sheer amount of pain. So while Monday is usually supposed to be a work day, it was pretty much eaten by this experience. But I still got a useful blog post out of it, so that's not truly a wasted day. Other notable things this week include caring for a friend's pet bird for a few days and a positive checkup at the dentist.
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 the harder-to-spot reaction to anxiety and depression. In children, this is particularly clear by example. There are two ways to deal with anxiety and depression: externalizing, and internalizing. Externalizing is what the classical problem children do: they disrupt class, get into fights, and act out. Children displaying these symptoms tend to be noted and helped at a higher rate than those that internalize. Internalizing is what people like me do. Instead of taking things out on other people, we bottle it up, perhaps blaming ourselves. Such children tend to be very quiet and do not attract attention. As such, they also do not receive help. Autistic people can fall into either or both of these categories. Often a person will tend towards one, but may occasionally display the other. In broad brush strokes, guys tend to externalize, and girls tend to internalize. These are merely trends and not predictive of any given person, so you or your loved one may or may not be a perfect example of this. It's both worrisome and heartening to see that there may soon be technology that allows us to detect internalized anxiety and depression. Heartening, because when used in a medical or school context, a 15 minute test could have detected my internalized anxiety and depression, and I could have gotten help sooner. My entire schooling experience could have been turned around into something positive. High school might not have been a slog. College might have been easier. There are so many autistic people and families of autistic people whose lives could be much improved by a round with these wearable sensors. Worrisome, because it's all too easy to demand, if these devices are so good, that they be worn all the time for "at-risk" children. All that data collected on children is stored somewhere, with insufficient security. You don't have to look far these days to find a story about some big company's data getting burgled, including credit card numbers and identities of customers, even though the company has used appropriate security precautions. Soon, people will be able to steal not only your credit card, but also your location, heart rate data, blood pressure, activity level, and other physical-health related information. Which I can guarantee, at least in the US, will then be used to invasively advertise to you. Possibly calculate some kind of health score which may win or lose you a job... and probably blackmail you. Remember this post, because I'm going to say I told you so if it happens. Like many new technologies, the possibilities are wondrous... but you do have to keep an eye out for how it can be abused. (Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
I've been married for over two years now. That means there has been plenty of time for arguments and getting upset with each other. While of course we do try not to argue, I can be rather rigid about some things, and my experience of our life together is rather different than my spouse's on some important facets. For instance, touch can hurt me rather than comfort me.
A lot of the learning we've done over the last few years has included how to recognize when the other person is upset, and what to do once that's recognized. With me, the first one is an extra complicated challenge. I thought it might be useful to present this information, because some of it may be applicable to you or your loved ones.
With most people, their faces display the whole range of their emotions, or at least what emotions they want to be displaying. This emotional expression is called "affect" in psychology. One of the ways you can start to recognize an autistic person is by their affect. If their emotional expressions seem flat all the time, that's a thing to note. Neurotypical people can also display blunted or flat affect, but it's usually because they're depressed or completely worn out.
The word choice amuses me because another definition of "affect" in the general lexicon means "to put on a pretense of." So, "she affected wealth and high position, but in truth was working retail." And also, "affected" as an adjective can mean "feigned" or "assumed artificially." In short, depending on how you think about the word, everyone's putting on pretenses of what they show on their faces.
So, with that in mind! If I'm slightly annoyed by something, my face may display it briefly before I decide it's really not worth my time. If I am more moderately or heavily annoyed, my face may show it and I may try to address the situation. Easy examples of both situations would be stuff that triggers my sound sensitivity.
Somebody dropping a heavy box of clothes from 60+ feet away might count as slightly annoying. The sound that produces would be low in pitch, and while it might be loud, the distance helps make that tolerable. I would hear this sound, but would try not to let it interrupt what I was doing.
However, someone's child screaming within 20 feet of me is more on the moderate to heavily annoying range. My face might display the pain of having that high-pitched, grating, unending shriek shredding into my brain. And if the child doesn't cease quickly, I might put in earplugs or try to leave the situation.
Emotional pain, such as that caused by arguments, can be much more painful. This is where it gets tricky. After a certain point, between "I'm upset" and "I am melting down, stand clear," my face stops displaying emotions. This is not because I'm trying to be confusing, and definitely does not mean I'm doing fine. It means I've lost regulation of those muscles and am instead focusing very hard on managing myself and the pain I'm feeling.
Affect, you see, takes effort for me. If I'm using all my energy to manage a conversation and my own hurt feelings, I have none left for communicating in a way that's unnatural to me. I go stone-faced. This is easy to mistake for "calm." It is very much not calm. In a direct argument, treating it like that can be disastrous.
After I'm pushed beyond "stone-faced," my face starts expressing emotions again... but only because I'm likely in tears or screaming. Ideally things never get to this point, but it does happen sometimes.
Not All Bad
This tendency to stone-face while moderately emotionally upset has its upsides. It made it so that I wasn't constantly scowling during school. Formalized education was not a pleasant experience, and more often than not, I was miserable. Also angry. But mostly miserable. If I'd actually looked how depressed and angry I was, much fuss would have been made over me. And since all I really wanted was to be left alone, this helped me survive.
Although I'm less miserable as an adult, the tendency to stone-face does still come in handy. In cases of being amongst strangers, I may be made miserable by any number of things, including my depression, screaming children, or people I'll never see again being cruel or rude to me on accident. Since I'd still generally prefer not to cause a fuss, this can be helpful.
It's probably not the best possible adaptation to the situation, but it beats being unable to go out in public. Some of my misery-inducing problems, like my depression, don't go away if asked nicely. There are just times you need to go grocery shopping, and they can't wait until you've stopped feeling like you're everything wrong with the world.
What's Camouflaging?
Camouflaging, in this context, is when autistic people deny their natural mentalities and behaviors in favor of appearing to be neurotypical. This is what the worst kinds of Applied Behavioral Analysis teach. On the surface, this might seem like a good thing: after all, neurotypical behavior is what's expected from everyone. Camouflaging, then, is trying to fit in.
The thing is, there's a price for denying who you are and stifling yourself. It's paid in emotional pain, which expresses itself as depression, anxiety, and other kinds of mental illness. All the responsibility is placed on the autistic person to "act normal" but neurotypical people do not then, in kind, try to accept and work with our differences when they are expressed. The result is an unjust society, and a markedly higher suicide rate in autistic adults.
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 another doctor's office, where I'm getting my medical expenses out of the way before my health care plan rolls over. There are such gems as "getting a wisdom tooth pulled," and "checking to make sure I haven't acquired skin cancer somewhere." The latter, at least, seems to all be in order. I wasn't super worried, but I thought I'd noticed some changes in one of my moles. Apparently normal changes, so that's good.
After all this is said and done, I think I'm going to actually manage to get all the blood tests I wanted to get done. So I'll have updates on what my vitamin levels look like, now that it's the middle of winter and I've been taking my supplements faithfully. Hopefully it'll be a good guide as to how to deal with the excessive tiredness... I'm super tired today, and have been for a few days. I'm not sure if that's screwiness with the new light box, the weather, hormones, or what. I'm making me a grump, though, which is super unhelpful for getting through life and getting work done. I guess I just feel like I'm slogging through life. It's very unhelpful for being a good spouse. Relatedly, today is the 13th of the month, which makes it our monthaversary. My spouse and I express our appreciation for each other via a minor celebration every 13th of the month. (We started dating and were married on the 13ths of those respective months, so it kind of makes sense.) In Februaries this is kind of weird because then Valentine's Day is the very next day. We don't have big plans for either occasion, though, which is probably just as well due to my current state.
In happier news, my grandmother seems to be doing better. In times past, I'd only see her about once a month, but I've been trying to do better about that and we're visiting about once a week. It's not much, it feels like, but it's something. Something is better than nothing.
Also, if you're seeing this late and wondering why... I seem to accidentally have scheduled it to go live at 9 PM instead of 9 AM... oops. Hopefully that won't happen 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 ties into the Diagnostic and Statistical Manual criteria for autism. More precisely, I think it makes a sound argument that rigidity isn't specifically an autistic trait. For reference, the criterion I'm referring to is this:
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
With this in mind... The article talks about psychological flexibility. Three levels, high, medium, and low. These levels of flexibility were measured alongside psychological distress. It was found that people suffering high levels of psychological distress tended to have low levels of psychological flexibility, while people with low levels of distress tended to have high levels of flexibility. So, what causes psychological distress? It's actually all kinds of things: difficulty finding a job or handling the demands of a job, a death or tragedy in your social circles, rejection from people in your social circles, not living up to the expectations you or other people place on you, the stress of moving from one home to another, or the slog of managing chronic pain or other conditions that wear away at a person. All these and more can cause distress, and the more things a person is dealing with at a time, the higher their distress level is. Some quick examples from people I've literally met to make these ideas more clear:
A male student in a Christian college recognizes, after a presentation on the sexuality spectrum, that those nagging feelings he's been trying to ignore since age 12 are the clear signs that he's gay. His community and parents will not approve.
A single mother finds that her job in retail (one of two jobs she holds) is upping her hours, and she does not have a choice about this change. The additional hours will make it so that she barely sees her kids each day. Her family is important to her, and she cherishes the time she spends with her kids. But she needs the job to pay for housing, food, and medical expenses. She must decide whether to quit the retail job and search for another job so she can still spend time with her kids, or sacrifice even more of her family-time in exchange for security.
An autistic child goes to an integrated school every day and tries to make friends with their peers. They do not succeed, over and over. The other children begin to mock the autistic person's eccentricities and refuse to be friends with them. The teachers do not intervene. The child feels lonely and despairing, and begins to withdraw into themself. The child's parents, seeing their lack of effort, encourage them to try harder.
The first example is societal and personal rejection. Gay and other LGBTQIA+ people often suffer this kind of rejection, and must decide whether they want to hide this part of their personality, or show it and accept the rejection that comes with it.
The second example is a matter of others' expectations and existing job demands. As big companies continue to see how far they can squeeze their employees, many people, especially minorities, have to make decisions like these.
The third example is a very common one for autistic children, and is an example of mismatched expectations as well as personal and societal rejection.
I would argue that existing as an autistic person in this world, a world that commonly doesn't accept, understand, or appreciate autistic people, is a source of psychological distress. Not because it's inherent to autism, but because of how people tend to react to that autism, and treat people with autism overall.
The end result of this raised amount of psychological distress might well be the rigidity ascribed to us in the diagnostic criteria. I think it's a reasonable assumption, anyway. If accurate, it also makes the case that if the psychological distress in an autistic person can be reduced, their flexibility will increase. Which I think we can all agree is a good thing.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Autism Adulthood: Strategies and Insights for a Fulfilling Life, by Susan Senator, is a remarkably thoughtful parent-written book about how to create a meaningful life for an adult autistic person. Especially, notably, a low- or non-verbal autistic person.
The book manages to handle this rather tricky subject with a surprising amount of grace and humanity. I'm afraid, as an autistic advocate, that I've been rather put off by the way autism parents talk about their grown children. One group in particular (whose name I won't mention in hopes of being more adult and graceful than several of them put together) was all but hostile to me when I attended one of their meetings. This was before I cut and dyed my hair, too, so I didn't exactly scream "young autistic adult in defiance of institutionalization and social norms."
Anyway, the author of this book seems to have an understanding of neurodiveristy and avoids demeaning terms like "adult child" and instead simply refers to her autistic son and her friends' sons as "our guys" or by their names. It's not exactly descriptive, but it's a lot more humanizing than literally any other vocabulary I've seen anywhere else. Her story mainly involves the stories of sons, rather than daughters, but I think much of the information in the book applies to both sexes.
The topics covered by the book include housing options, employment, risk management, choosing caregivers, financial planning, and the dreaded question, "what happens when I die?" Rather than the author simply opining on each subject, she went out of her way to interview and discuss these subjects with dozens of parents, professionals, caregivers, and even siblings of autistic adults.
The writing style of the book was clear and easy for me to understand. It was both approachable and friendly, neither overbearing nor over-specific. It provides a framework for all the subjects it touches, giving you places to start and pointers in broad brush strokes. Because each state in the US has different laws around Medicaid and housing, this is actually a good thing. It leads you to the right kinds of questions to ask.
I also really appreciated that this book took the time to address the issue of siblings. Siblings can be one of the greatest gifts to autistic people. But there's certain struggles and frustrations involved in being a sibling to an autistic person, and these things are sometimes overlooked in the work of supporting the autistic person. The fact that this book offers resources to help support siblings as well as the parents is invaluable, and I very much hope that these resources become more widespread.
On a personal note, two things. First, I appreciated chapter 6: "The Struggles of Apparently High-Functioning Autistic Adults." It makes very valid points about the situations of people like me. To those, I'd add one more thing. For people like her son Nat, there's hopefully a village to help surround and support him. For someone like me? Not so much. It's not that my parents didn't love me. It's that they expected me to handle my own issues. And I did, but I suffered for the lack of support. If all goes well, Nat will never lack for people to ask for help the way I did.
Second, the title of chapter 8 is, "Am I My Brother's Keeper?" This is, of course, a reference to the Biblical story of Cain and Abel. After Cain killed Abel in jealous rage, God asked Cain where his brother was. His flippant response was the quoted question. Many years later, I read the true answer to that question in a work of science fiction. I wanted to include it here.
Am I my brother's keeper? You are his keeper, as he is yours.
Read This Book If
You're a parent, guardian, or caregiver of an autistic person, especially one who's pretty clearly not following the "standard" academic track, is low- or non-verbal, or is already an adult and is having a hard time adjusting to "adult life." Even extended family could make use of this book, if only to understand what the parent, guardian, or caregiver is going through, and how to help.
This has become the first book I will point to if autism parents ask me, "How do I plan for my child's future?" If I was non-verbal or low-verbal, this is the book I'd want my parents to read. It's that good. Please read it.
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. I am hopefully going to be more awake each day from now on. A couple weeks ago I mentioned I'd borrowed a light box thing from my doctor. I complained of being painfully awake. Turns out I'd been using it for too long. (How 20 minutes per day can be too long, God only knows.) But it did have an appreciable effect, so I got the least expensive version to have around the house. Meet the Tiny Doom-Light.
Barely taller than my hand, but has all the attitude of the larger light!
So I'll experiment with this a little bit. It's possible that as little as 5 minutes a day will be sufficient to elbow my circadian rhythm back into proper order. For most people, 5 minutes would be nothing, but my system is apparently obnoxiously oversensitive. It's like that about sugar and other things, too. Likely this will become one of the many coping tools I have around the house, adding onto my gatorade substitute, my supplements, my exercise bike, my leg pillows, my earplugs, and my grounding mats. So many things to keep one person relatively balanced. It's kind of disheartening, when you consider I only just turned 30. I'm feeling a little more overwhelmed and low-energy than usual this week due to health-related developments in my grandmother. She's been in and out of the hospital due to various things. At present she seems to be on the road to recovery, with no further hiccups anticipated. So that's good. Because she's important to me, I've taken time out of my week to go to the various places she's been recovering to visit, sometimes with my mom, sometimes not. It's been an educational experience, which I may explain in more detail later. It's not the cheeriest subject, I'm afraid. For the time being, I'll just say that she's my very last grandparent, including Chris' relatives, and while our relationship has certainly had bumps, I love her very much and hope for the best for her. I spent time visiting I'd have otherwise spent working on this blog and handling chores, but it was time well-spent. I'm glad to see the piles of snow I mentioned last week on the retreat. It should make it easier to visit in the future.
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 explains a bit of the complexity of emotional recognition for autistic people. Assume the autistic person doesn't have the innate ability to read faces, the way typically-developing people usually do. First, everyone's face is different. Second, there are 16,384 different ways a human face can express emotions. Third, a lot of the people you need to read aren't familiar to you. Fourth, everyone expects you to be able to do this flawlessly. I thought it was kind of interesting, and heartening, that there were only 35 categories of emotional expression. That doesn't, you understand, make it much less complicated to read any given person's face. But it does mean that teaching materials for each of the 35 categories would actually be an option. This article got me thinking about how I read faces, and it occurs to me that I tend to consider the situation a person is in first, and then try to piece together their expression from that starting point. So if someone looks angry when their situation should be calming and happy, I'm going to be very confused and not quite believe my eyes until I can figure out why they look angry. That's backwards of most people, from what I can tell. I think most people read expressions first and then consider circumstances from there, if their train of thought goes that far. Looking at the stock image on the article, with the eight pictures of the teenage girl, I have difficulty telling the difference between the emotions in the 5th, 7th, and 8th pictures. And because it's just a stock photo, and thus has minimal context, I have literally no idea what the minute differences in head tilt, eye crinkling, and... whatever else normal people see in those pictures to differentiate them. I really have no idea. When it comes to reading expressions, I really need context for anything more subtle than, "angry, sad, happy, or disgusted." I took a test online once, and it told me that while I don't have face blindness, but I do have great difficulty with faces. This was not news to me. Just a few days ago I met a guy, and saw him again later at another lecture. He recognized me easily (I'm sure the blue hair helped), but because he was wearing a hat and because my eyes and brain don't work together well, I didn't recognize him at all. I couldn't tell if he was offended, but my guess is yes. Most people are. It gives me a great deal of anxiety. (Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
I don't often do a lot of discussion in regards to physical disabilities. This is because I don't, at this point in my life, have any. That makes me a less effective advocate for issues like these, and so I usually simply point people to better advocates on the subjects (such as the above article).
As I age, my health situation will likely change, and perhaps I'll be able to advocate more personally. However, my current lack of physically expressed disabilities isn't necessarily the norm for autistic adults. Or even autistic children. So this merits the signal boost and whatever limited insight I can offer.
It's a bit of a case of "better late than never," in all honesty (the straw debate debuted in 2018), but if nothing else, I hope it'll shed a bit of light on the subject.
Cerebral Palsy (CP) sometimes accompanies autism. So does epilepsy. Sometimes multiple sclerosis as well. But even something as simple as deficits in gross and/or fine motor skills (very common with autism) can make a plastic straw from a luxury into a necessity.
Ever gotten water into your lungs? Like, you swallowed the wrong way and some got down the wrong pipe? And though you coughed and hacked for minutes, you still felt like there was stuff dripping into your lungs? I have. It's not common for me, but it's very unpleasant. Also, apparently, it can absolutely kill you, thanks to pneumonia.
Imagine having to have that feeling of liquid in your lungs every time you tried to have a drink. Also, your hands shake, so you're always spilling on yourself. Your clothes will frequently smell like pop, or tea, or whatever drink you happen to have. They'll develop stains, which people will see and become judgmental about.
You can avoid all of that with a simple plastic straw.
The author here knows more about the subject than I do. But I'd add my voice to hers: if you care about "being green," advocate for compostable takeout containers. Or start recycling their packing waste and food waste. Or you, personally, help fund your local recycling center so they can recycle more stuff. Maybe don't personally use plastic straws if you don't need them, too, but do these other things. They are by far better ways to help the environment than simply taking away assistive technology.
