Worth Your Read/Watch: Deej

Posted on by Realistic Autistic
http://bloom-parentingkidswithdisabilities.blogspot.com/2018/05/deej-upends-what-you-think-you-know.html

Lacking speech does not mean lacking intelligence, or capability, or humanity.

This seems like such an obvious thing to say.  Thing is, it’s not.  Speech is the single most common communication method for humans.  It’s taken for granted that you can and will communicate via speech at a moment’s notice.  If you can’t express yourself “normally” via speech, people automatically relegate you to a rung normally occupied by pets and very small children.

Deej, the interviewee in this article, knows this far better than anyone I’ve ever met.  He suggests, in the article, asking neurotypical people why it is that speech is associated with humanity.

I’m not NT, and never will be… but I would guess that it’s because it’s one of the things we as a species think separates us from other animals.  It’s one of those age-old assumptions, that speech is what makes for sentience, and therefore because humans have speech and language, we are superior to all other animals.  (Also unstated, therefore humans lacking speech aren’t sentient and therefore aren’t human.)

It’s false, of course.  Language as we recognize it may be a specifically human form of communication, but it doesn’t make or break a person’s humanity.  Deej shows us this clearly, in this interview and in his movie.  He is fully human.  No ifs, ands, or buts about it.

I have never been physically disabled or had any extended period of time where I couldn’t speak.  But a few lines from a YA science fiction series comes to mind.  A character in the story has a pretty severe case of cerebral palsy.  He generally can’t speak a single word without a lot of effort.  In the story, he gains the ability to communicate using telepathy.  While using this ability, he comments, “You know what hell on Earth is?  Having a large vocabulary, an encyclopedic knowledge of musical theater, and a speech impediment.”

I kind of wish telepathy was a real thing, or that we had two or even three primary communication forms instead of just speech, so that people like Deej, and this character, could express themselves freely.

Communication is important.  Speech, though, is only one form of communication.  It’s time we recognize and prioritize other forms of it as well, so people like Deej aren’t told, by our words and our actions, that they are less than human.  We have so much to learn from him, and from people like him.

Find Deej’s website here, and his movie’s website here.

Reading the Research: Eye Contact and "Eye Contact"

Posted on by Realistic Autistic
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.)

Deconstructing A Lifetime\’s Expectations

Posted on by Realistic Autistic
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.

This financial strain of the loans you take out to pay for tuition, room, and board beggars your income from any job you might get post-college… which statistics show us is not guaranteed to be a good one using your degree anyway.  Those statistics are across the mainstream population, and it\’s not just a temporary rut you fall into– the underemployment can last for much of your life.  Your prognosis only gets worse if you add in special needs.

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*.

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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 car is 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.)

"If My Face Has Gone Neutral, It\’s Bad", or Flattened Affect in Camouflaging Autistic People

Posted on by Realistic Autistic
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.

This is particularly relevant when you recall that people don\’t merely convey their mental states on their faces, but instead use them as another hidden form of communication and to modify the behaviors of others.

A Matter of Degrees

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.  

Worth Your Read: The Last Straw

Posted on by Realistic Autistic
https://miatblog.org/2019/01/the-last-straw/

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.  

Looking Forward, Looking Back (2019)

Posted on by Realistic Autistic
At least where I\’ve lived, people make New Year\’s Resolutions around New Year.  Sometimes they\’re made in earnest, sometimes they\’re just a load of hot air.  But mostly what I notice is that people tend to give up on them if they don\’t work out fairly quickly.  
I think that\’s kind of pointless.  Real change, I\’ve learned from both my psychology degree and from personal experience, is often slow.  Sometimes it\’s very difficult.  Habits can hard to change.  But if you want it badly enough, you can manage it despite that slowness and difficulty.  
I\’m not as enamored of making goals for the new year as my culture is, but I do think even minor introspection on ways to improve one\’s life is a good idea.  So while I\’ll flatly refuse to call them resolutions, I do make a list of goals each year.  Last year\’s is here.
Ideally, these are SMART goals: Specific, Measurable, Achievable, Relevant, and Time-bound.  So rather than saying, \”I\’m going to get in shape this year!\” you might say, \”This year, I\’m going to aim to lose 20 pounds by instituting and holding a 4 day a week exercise schedule at the gym.\”  You have your measureable, time-bound goal: lose 20 pounds by the end of the year.  You have a specific, relevant, measurable method of achieving this goal as well: creating and adhering to a 4 day a week exercise schedule at the gym.  And hopefully your chosen method is achievable, or you\’d best choose a different method, like yoga, cycling, or jogging.  

Looking Back at 2018\’s Goals

1.  Create and keep a buffer for at least 10 months of the year.  Preferably the entire year after I rebuild the buffer.

I think I actually succeeded at this one.  Sometimes the buffer was only \”well I still have one more week of buffer, that counts..!\”  And I\’m pretty sure I did run out of buffer at least once or twice, but the goal wasn\’t to not run out of buffer, it was to keep a buffer for the vast majority of the year.  Which I did.  Yay!

2.  Finish the arduous and exhausting job of house-hunting, get moved into a house or condo, and stop having to give a crap about the whole thing.

This also happened.  It was deeply unfun.  But I\’m writing this not from a rented apartment, but a mortgaged condo.  It took a lot of work on my spouse\’s part, sifting listings, finding a realtor, and both of us together figuring out what we wanted from a place.  Seeing all the various places despite work and other scheduling issues.  (You can read the first post of the 3 part saga here.)

3.  Become better at managing a social network, and network with several autism researchers in pursuit of increasing my chances at a career in autism, and if nothing else, helping nudge research away from \”what causes autism\” toward \”what helps autistic people?\”

Uh.  This… mostly didn\’t happen.  I didn\’t take out the \”how to network\” book at the library like I said I might.  I did meet some people at the government research panels, and I think made some actual human connections, but there has to be follow-through there, and I… didn\’t.  I need to work on getting peoples\’ business cards.  And then follow up with them.  And maybe get that book.  

It\’s not a total loss.  I did talk to researchers and parents this year.  I just don\’t think I made as much of a difference as I was hoping to.  I won\’t say I completely failed at this goal, but I\’d give it a \”ehh…\” rather than a \”yay!\” or \”success.\”  Failure is a mandatory part of life, and a valuable learning experience, so hopefully I can learn from this and do better in the coming year.

4.  Keep steady on the 2 days a week exercise with my parents, and find, buy, and use a recumbent exercise bike this year for the 3rd day per week.

This was kind of a mixed bag.  I definitely succeeded at part 1, except for during holidays and such when it wasn\’t really an option to do the classes.  Over the late spring, summer, and early fall, I well and easily exceeded this goal, though not in the way I\’d planned.  I took my bike and went outdoors with it 3 days a week, using the bike trails that run a sneeze away from my new home.  So I had a 5 day a week exercise schedule while the weather was nice.

But when the weather turned poorer, I stopped biking outside.  Unfortunately, I find biking outside much more tolerable than using the recumbient bike inside.  I\’d meant to have something else to fill the third day, like yoga or some other indoor exercise, but between the mess that was October and the holidays afterwards, that third day just really didn\’t happen.

I think it could happen, if I re-committed to it.  But I really need to do something with myself besides trying to use the computer and the exercise bike at the same time.  I can do it, but it\’s clumsy and unpleasant and makes me not want to repeat the experience each time.  The downstairs area has more options for distractions from exercise now.  I just need to figure out something that doesn\’t feel like I\’m wasting time, yet doesn\’t demand I twist my torso sideways.

Moving Forward in 2019

This year\’s goals are going to be bit less generic, I think.  Some of them won\’t make any sense without explanation, which is probably fine.  In general I don\’t think I make all that much sense without explanation, being autistic and such.  
So, this year, I\’m going to try to:
1.  Exercise at least 3 days a week, at least a half hour each session, minimum.

Exercise has been on my goals lists for the last two years, too.  I\’m still not managing 3 days a week reliably.  Failure is a mandatory part of life, and an important learning opportunity.  While I definitely got more exercise last year than any year prior, I still need a better plan as to how to handle the months of bad weather.  
Exercise tamps down on my anxiety and depression levels, which is extremely important for my wellbeing.  It\’s a pain in the rear, though, because in almost every context, I really don\’t enjoy exercise.  The singular exception is outdoor biking in good weather, which I do kind of slightly enjoy?  I still don\’t like the exertion, but the sunlight, fresh air, and scenery changes mostly make up for it.  
So this will probably keep being on my goals list until it\’s accomplished to my satisfaction.  I\’d love to lose weight due to this, but I\’d really just settle for being healthier overall, mentally and physically.  The weight loss will happen, or it won\’t.

2. Finish my catching up on the MBMBAM podcast and get started on the wider range of podcasts I\’ve already set up for myself.

This won\’t make sense to most of my readers.  MBMBAM is the shortened version of My Brother, My Brother, and Me.  It\’s a comedy podcast where three brothers take questions from their listeners and the Internet, and discuss them in funny ways.  Sometimes the questions get answered, sometimes not, but the end result is generally enjoyable if you don\’t mind the absurdity.  The brothers have good chemistry for siblings.  
If you followed that link, you\’ll notice there are in excess of 440 of these episodes.  I have this very very bad habit of wanting to start from the beginning with things, and not at the end.  Even if, as in this case, you really don\’t need to start at the beginning to enjoy the series.  
I think I\’ve been trying to catch up on this podcast for something like a year at this point.  I am on episode 356, so I\’m… getting there.  But in the meantime, I\’ve collected other recommendations, such as NPR\’s Invisibilia, which talks about interesting social phenomena and forces that aren\’t normally discussed in the news, with the idea of making you think more about yourself, your beliefs, and your life.  
There\’s also Pivot, which looks like it\’s probably more news-related.  Which would somewhat address my abysmal lack of connectivity with world events. And the one most relevant to this blog: Ouch: Disability Talk.  The interviews and discussions from people hooked into the disability world will be helpful for making this blog relevant to the wider autism spectrum.  

3. Quantify the environmental downers around the house I can be susceptible to, and eliminate or treat the issues if at all possible.

I\’ve complained a lot about the algae in the pond out back, and mold inside the house.  But they\’re not the whole story, and I\’m still trying to figure out what else is messing with me.  I think it\’s an air quality thing, because when I shut the flue in the fireplace, it gets worse.  So, while it\’s still cold outside and the algae is dead, I\’m occasionally airing out the house.  I also have a respirator mask for when the algae starts growing again, but it\’s uncomfortable to wear.  
Anyway, this year I\’d like to pin down what things tend to cause what symptoms, and what this third factor is.  It doesn\’t seem to be carbon monoxide (whew), and we\’ve searched the house pretty thoroughly for more mold, with no luck.  Narrowing things down is important, if nothing else.  
We also might look into buying a better air purifier.  The one we have makes an irritating whine that sets off my tinnitus.  It\’s better to treat the source of the problem than to simply slap a bandaid (air purifier) on it, but if bandaid is all I have, it\’s what I\’ll take.

4. Pick up an autism-related volunteer or paid job.

This is a form of career progress.  I feel like I do best when I have more chances to meet people, regularly.  Conferences are very very expensive, so if I ever have copious amounts of money, I could do those.  But I don\’t right now, so a part time job of some variety would be a potential way forward.  
Part time would be basically mandatory if I want to keep this blog going.  I\’ve done pretty well here in the last year, and I\’d hate to lose it in the mess of transitioning to having less free time.
Fortunately, I have an easy \”in\” for a volunteer position with Autism Support of Kent County.  I just need to follow up on it and commit to it.  
An ancillary goal is to print out these goals and have them at my computer where I can see them, so I don\’t forget about them, by, say, June.  Making goals is good, but kind of pointless if you don\’t try to follow through.  

WYR: Neurodiversity and Relationships

Posted on by Realistic Autistic
http://jerobison.blogspot.com/2018/11/neurodiversity-and-relationships.html

So, I can personally back this up.  Turns out at least 2 of my high school friends are on the autism spectrum or otherwise neurodiverse, and another few from college.  This was definitely not intentional. 

I didn\’t know I was autistic at the time, and neither did anyone else.  It just so happens that the people who were willing to put up with me tended to be odd themselves, which we later found out was because we were neurodiverse in some way or another. 

My spouse has expressed worries to me sometimes, that something\’s not quite right with him.  These are similar worries to ones I had prior to learning I\’m autistic.  My formal training in psychology doesn\’t extend to a really good diagnostic knowledge, but in all honesty, the diagnostic manual isn\’t super helpful in many cases.  I didn\’t recognize the autism in myself even after studying autism. 

A term I was introduced to, when it comes to being inclusive and recognizing the sheer immensity of human diversity, is \”not yet diagnosed.\”  This term recognizes that all people, even ones generally accepted as \”neurotypical,\” differ, sometimes rather impressively.  So even people who don\’t have or qualify for a formal diagnosis can be very different in both good and bad ways. 

As I\’ve learned more about the psychology diagnostic manual, I\’ve also learned that psychology is a very young science.  Our understanding of people and how we think and act is very rudimentary, by comparison to physics and biology.  As such, \”not yet diagnosed\” is also a way to acknowledge that we have a lot to learn about people. 

Finally, if you\’re familiar with the term \”alphabet soup\” in relation to diagnoses in people, you\’ll know that people rarely get away with just a single diagnosis.  I have five, personally, which include autism, anxiety, depression, and a couple other brain weirdnesses.  Psychology simply isn\’t good at putting people in boxes yet, because people tend to defy boxes. 

Whether that\’s because the diagnostic criteria simply aren\’t good enough, or because people are simply that complicated, is as of yet unknown.  But you can still safely shake your head when presented with a list of diagnoses, because even with that information, you really won\’t know how to help the person until you meet them.  Yet we still insist on putting people in these boxes, in hopes that it helps.  Overdiagnosis is thus an issue.  One of my formal diagnoses is \”ADHD,\” which I\’m pretty sure is inaccurate. 

\”Not yet diagnosed\” thusly also includes the element of over diagnosis, with the understanding that probably someday psychology will have a name, however accurate or inaccurate, for what\’s different about you. 

I like it as a term, honestly.  

Worth Your Read: Self-Determination

Posted on by Realistic Autistic
http://libertyhousefoundation.net/wp-content/uploads/2014/03/goes-under-informative-articles-You-and-I.pdf

Can you get up in the middle of the night and microwave a burrito for a midnight snack?  If so, you probably aren\’t living in an institution.

This \”burrito test\” is not a measure of midnight snacking.  It\’s a measure of self-determination.  Can you:

  • A) get up in the middle of the night and leave your room? 
  • B) easily and freely access a refrigerator and microwave?  
  • C) choose a snack that you want that isn\’t particularly healthy, and 
  • D) consume it outside a regular \”healthy\” eating schedule?
Most people, statistically, pass this test.  But those numbers drop when you start looking at the autistic population, and at other neurodiverse populations.  
In formal settings, \”self-determination\” is a buzzword.  It\’s giving the person a choice at pre-determined intervals, in structured decisions, and in activities tailored to the person\’s interests.  This isn\’t itself all bad (and it\’s a major improvement from what institutions used to be like), but it\’s not true self-determination.  
Self-determination is the ability to push boundaries and take risks.  It\’s having as much privacy as possible.  It\’s having the ability to leave situations if needed.  It\’s going to the nearest fast food restaurant because you felt like it.  It\’s trying whatever activities in the community you want to, and quitting them if you don\’t like them.  
Self-determination is scary, and messy, and complicated.  It scares parents of neurodiverse people, especially ones with high support needs.  
The job of a parent, for a big part of a child\’s life, is to protect them from things they don\’t understand but could definitely hurt them.  When the child becomes an adult, but still has support needs that make them seem less \”adult,\” parents often still think and treat their young adult as a child.  In fact, the terminology used in some parent advocate organizations is \”adult child.\”  Emphasis on the \”child\” part.  
This protective mentality makes it really hard to stand back and let the young adult make their own mistakes.  
All parents have to learn this \”standing back\” mentality eventually.  Parents of neurotypical (NT) children usually handle it easier than parents of neurodiverse children, because the NT children tend to better meet their parents\’ definitions of \”adulthood\” than neurodiverse children.   Their capabilities are within \”normal\” parameters.  
Maybe 18-year-old John (NT) goes off to college with slightly lacking hygiene, little fashion sense, and sometimes forgets to have breakfast.  But his parents won\’t worry as much about him as 18-year-old Jake (autistic), who still has trouble dressing himself, tends to go on long monologues about the latest comic books, and needs a lot of help to manage his classes, work, chores, and leisure time.  
Both John and Jake could thrive in college, but Jake is much less likely to actually have the opportunity.  His higher support needs are part of that, but they\’re not the whole story.  Jake might never even be offered the possibility, because his support needs seem impossible to manage in a setting like college.  
This is true of all levels of support needs, in my experience.  I\’ve known fully verbal, well-balanced autistic people in their 20s, whose parents insisted on controlling most aspects of their lives.  It gets less obviously repressive as support needs go up, but the pattern holds.  Parents of neurodiverse people tend to be overprotective, to the point of being oppressive.  And the period of overprotectiveness often lasts much longer for neurodiverse people.  
I go to the parent support group in my area for many reasons.  One of them, though, is to let parents see what their kids might be, given the right supports and services.  It\’s very easy to look at your child having a meltdown, or being nonverbal, or failing to manage their time, day after day, and think things will never be different.  That you\’ll always need to be on hand, managing their life exactly the same way at 26 as you did at 16.  
It\’s hard to let your child make obvious mistakes, and not rush in and stop those mistakes before they happen.  
But you have to.  That\’s the thing.  Some lessons in life have to be learned personally.  If you aren\’t allowing us to make mistakes, mess things up, and suffer from the results, you aren\’t allowing us to grow up.  
I can\’t give you a good road map for allowing self-determination for yourself, or your child.  That map is different for every person.  But I can say that as your child grows up, the role of a parent shifts.  You start being less \”the protector\” and more \”home base.\”  
As much as possible, stand back and let your young adult experience the world in the manner they want, try things, succeed or fail, but always have a home base to return to.  You know more about being an adult than they do, so be available to offer that wisdom to them.  Don\’t shove it down their throats, simply be available.  Accept that growing up includes taking risks, and some of those risks will end in mistakes and failures.  That\’s part of life, and that\’s okay!  

Music with my Autism

Posted on by Realistic Autistic
I ran across an article discussing the benefits of music for autistic people.  I\’m always pleased to see science studying music, because I think it\’s a very important and powerful medium.  It\’s also an integral part of my life, to the point that if music didn\’t exist, I wouldn\’t be me.  Also, I probably wouldn\’t have made it through college with my sanity mostly intact.  

The study talks about improved communication, improved brain connectivity, and family quality life, but not reduced autism severity.  Depending on who you ask, those things are connected, and thus the severity of the autism was \”improved.\”  As the summary here doesn\’t formally define autism, it\’s an open question… but when reading these articles, you always need to keep in mind what the researchers are defining as autism.  It may not be the same way you personally define autism.  My personal definition is different than that of any given researcher, and that of any given parent.  

Growing Up

Music has always featured prominently through my life.  When I was very little, my mother would sing to me, not only at bedtime, but also to distract me sufficiently so she could put on my shoes without a fuss.  Beethoven, Bach, and Brahms (and other classical masters) often played over the stereo in the living room in whatever house we lived in.  Mom didn\’t do this as part of some plan to increase my IQ or whatever.  She has a Masters degree in music, and a great fondness for classical music, and housework was drudgery.  So she played various recordings on cassette tape to make the housework more tolerable.  

I sang in choirs, of course, and attempted to learn to play various instruments, mostly unsuccessfully (practice time + anxiety disorder + extremely musically literate parents = no actual practice time).  As a family we attended church, which meant singing church hymns every Sunday.  I memorized many of those over the years, even though we moved between areas (and churches and even denominations).  Having them memorized was comforting, because hearing the familiar sequences of hymns at new places helped counter the unfamiliarity.  

One of my first \”big\” presents, as a child, was a stereo.  I played many cassette tapes on it, with various kinds of music.  I think it was in middle school, or early high school that I received my first portable CD player.  It was meant to be used while walking or running, I think.  I was never a terribly active child, but I did like having a favorite CD on hand to listen to, with whatever headphones I had onhand.  I went through many pairs of headphones, especially once I got an iPod (late high school/early college).

My personal music collection began with just a few CDs in middle school, mostly of classical music or soundscapes.  The latter were ostensibly to help me sleep, but in all honesty, I listened to them at any time of day.  Their soothing nature was helpful in handling the purgatory known as school.  I was introduced to more popular music in high school, of course, and even given a couple CD mixtapes of various favorite songs from people.  Which was pretty cool, and is something I enjoy collecting today.  I have playlists from about a dozen people, which I treasure even though those people have mostly moved on from my life.

Using Music as Assistive Technology

Listening to music allows me to leave or step aside from my current state of mind and sink into the emotions or message of the music.  The interesting thing about music is that there\’s so many possible ways to interpret a single song, let alone whole albums.  Never mind mixtapes and personalized playlists.  This was particularly important in college, when the stress and difficulty of life ramped up.

I would get into an artist or a particular album, and listen to that music while walking between classes.  When I took exercise classes, I invented playlists to keep myself sane while I pulled my weight around the track, or forced my muscles to dully lift weights over and over.  Untangling headphone cords became a way of life, and it was more common to see me wearing headphones than not.

At some point in my childhood, I learned that professional DJs tend to have about 20,000 songs in their music collections.  Naturally, the type of music they have depends on what kinds of gigs they run… but having a collection that large appealed to me.  At present, my collection is just over 15k songs.  They do not follow a theme overall.  Large swaths of those songs are from video game soundtracks, because many of those were never licensed and I can therefore not be fined for having them.  But the remainder covers every major musical category I\’m aware of, from Alternative to World.  Metal, Rap, Industrial, Jpop, Electronica, and even Sacred music lurk in my collection.  I certainly have favorites and types of music I like less, but on the whole, I consider myself fairly appreciative of most musical styles.

As an adult, I\’ve stopped wearing headphones quite so much… but that\’s because I have more devices with decent speakers and fewer people around me to annoy by using those speakers.  For example, I am currently listening to piano music using my TV, which helps drown out the incessant scream of the vacuum cleaner upstairs.  Instead of an iPod (or a phone), I have a tablet larger than both my hands.  It has a headphone jack, of course, but it also has decent speakers, which I tend to use instead.

Personal Portable MP3 Player

One of the great kindnesses of my life is that even when I\’m separated from a device that plays music, my own mind can serve as an MP3 player, to an extent.  It\’s not as flawlessly accurate as an actual MP3 player, so if I don\’t have the song perfectly memorized, I can\’t play it in my head perfectly.  In the case of songs with words, it rarely matters.  I\’m word-centric and literalist in mentality, so if the vocal line is intact, the rest follows.

It\’s an effort to have my mental MP3 player play what I have in mind, but if I don\’t have something in mind to play, my brain will simply play whatever I\’m currently into, or church music, or even something chosen for reasons I don\’t understand.

I once was having a really hard time in life, struggling to keep my head above metaphorical water between a string of life demands and social occasions I couldn\’t miss.  And for several hours, when I was really feeling the stress, my mental MP3 player opted to play a particular playlist from the epilogue of a years-old D&D game.  This playlist had been the \”the game\’s done, you survived and succeeded, here\’s what happens afterwards\” playlist.  After thinking about it, I realized my brain was trying to comfort me and tell me to hang in there, because it was almost over. 

I can sometimes get a sense for my moods based on what music is playing in my head.  Usually it\’s not as obvious as the above example.  As I said, I\’m word-centric and a literalist in mentality, meaning that if the song has words, they probably feature first in terms of how I understand the music.  So if the words in a song are about a particular subject, or sad overall, I can kind of assume that\’s why.  Even with all that known, I mostly can\’t figure out why a particular song might be playing.   I mostly just shrug at my mental soundtrack, noting what\’s playing but not understanding why it\’s playing.  I have a lot left to learn on that front.

A Lifelong Effect

I have no doubts I wouldn\’t be the same person if music hadn\’t been so involved in my life.  I wouldn\’t have been able to self-soothe in college so easily, which likely would have led to dropping out entirely.  That\’s the easiest example.  
Would it have been a struggle every day to put my shoes on, as a little child?  Might other simple tasks have been affected by the struggle?  Perhaps I would have become a more defiant child.  The family dynamics themselves could have been affected, with me being an even larger problem child than I already was.  Perhaps the conflict would have spilled over into school, and I might not have graduated high school despite having the ability to do so.  Perhaps, without music tying the disparate parts of my brain together, I might not have become as good with words as I am, or learned the coordination necessary to roller skate, or even walk smoothly.  
I wasn\’t terribly social as a child, but being in choirs every year meant a certain amount of built-in socialization in my week, in addition to school.  That\’s a good thing, generally, even though it\’s tiring.  And, high school choir is how I met my spouse-to-be.  For about half a year, we were in the same choir in high school.  That was just long enough for me to recognize he was a decent sort, and for him to prove it by his actions, which paved the way for our later interactions, discussions, dating, and eventually, marriage.  
As an adult, I usually listen to music at least once a day, on the car stereo as I drive places, using my support tablet at home or outside, or using the TV or the computer to access my music library.  I would say I don\’t use music as much as I used to in school, but that\’s perhaps because there\’s less commute time involved.  When I was in school, there was always the bus ride to and from home, study halls, and the time between classes.  In college, there was the 5-15 minute walk between classes, plus study time at home.  I still listen to music in the car, but it\’s drawn from a smaller pool than the 15k songs on my computer.  (To be fair, it\’s not like a CD can hold 83 gigs of data…)
I do still self-soothe using music, though.  Hearing familiar music brings to mind the time period of life I listened to that piece most.  So, listening to certain punk rock songs reminds me of high school, which helps me work through or recognize being angry, stressed, and sad.  Listening to certain choral pieces can remind me of when I was learning them, and, like my father, incline me to sing along as the music plays.  Various pop songs remind me more broadly of their eras, and comfort me by being familiar and predictable.  
For obvious reasons, I\’m kind of alarmed that music classes, choirs, orchestras, and bands are being phased out of schools in favor of expanding sports.  Without music, I would not be who I am, and likely wouldn\’t have gotten as far in life as I have.  I\’d like it if every person had that opportunity.  No exceptions.  

Worth Your Read: Where Do We Work?

Posted on by Realistic Autistic
https://www.houstonchronicle.com/news/health/article/500-000-teens-with-autism-will-become-adults-in-13338984.php

This is the thorny, dreaded question for both autistic people and parents of autistic people.  While the term \”boomerang generation\” has been applied to millennials as a whole, it\’s particularly apt when speaking of people with special needs.  \”Boomerang\” because we go out and try to manage adult life, but end up back at home with our parents.

There simply aren\’t enough jobs, and they don\’t pay enough to live on.  When you add in special needs and disabilities, the opportunities shrink even further.  How, then, are we supposed to take care of ourselves?  What happens to us when our parents are gone?

This question comes up a lot in the parent support meetings I attend every month, and it\’s one that has no simple answer.  The usual solution is to shoehorn the autistic person into manual labor (which pays abysmally, by the way), and hope we can keep the job.  Some people are happy doing that, and more power to them.  Personally, I was extremely unhappy doing manual labor, which deteriorated my emotional and mental stability until I finally quit.

The promise of higher education is that you pay your dues (tuition, which now usually ends in life-crippling debt), and then you get a job in your field afterwards to support yourself, and perhaps a family.  That was the route I tried to take.  Managing college can be extremely challenging for autistic people, between the loss of parental supports, the increased social challenges, and the increased workload.  Assuming you could manage the rising difficulty of juggling all of that, and your self-care and social skills were up to the task, it\’s supposed to be worth it.

The problem is that college no longer necessarily leads to a good job.  But it definitely leads to massive expenditures of money, and usually, debt.  So I, like many others, ended up with a college education, but no job to show for it.  I attempted to hold jobs related to my minor in college, but between the depression and the complete lack of understanding of my specific difficulties, I wasn\’t able to keep the jobs for very long.

Discouraged, I began looking for under-employment positions rather than lose my apartment.  Few of those were tolerable, and eventually, I stopped looking.  At present, I do consulting work, usually as an autistic advocate.  But the pay is not at all dependable, unfortunately, and my spouse\’s income pays for most of our expenses.

My story is fairly common, though much less heartbreaking than most.  So what\’s to be done?

Fortunately, autism is becoming better understood, and organizations are beginning to prioritize hiring people with disabilities.  Various local organizations offer \”find employment\” services, and those are often a good place to start.  Additionally, though, there are larger, nationwide or worldwide organizations that can help.  Here\’s a few:

https://specialisterneusa.com/
https://autismallianceofmichigan.org/employment/
http://www.easterseals.com/our-programs/employment-training/
http://www.autismsource.org/

The ideal success story is that the autistic person finds a good job that they love and which pays for their expenses (rent, food, some leisure, and support services).  This is what I tried for, and failed to manage.

In reality, success usually looks more like this: an autistic person finds a part time job they like or at least can manage.  They (or their parents) manage their hours carefully so they can continue to receive Supplemental Security Income, stay on Medicaid, and continue to receive support services through Medicaid.  They continue to live at home, or perhaps find a place in low-income housing. This is the success story I hear most from the parents at the parent autism support group.

This is not ideal, but it\’s better than what often happens: the autistic person languishes at home, becoming lethargic, depressed, and dispirited.  They rely on their parents to provide supports, do nothing worthwhile with their lives, and suffer because of it.  We can do better.