Reading the Research: Walking a Virtual Mile in Someone Else's Shoes

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 gives us a glimpse into the future.  There are a lot of potential uses for virtual reality.  These researchers have landed on the idea of making sexism a more real problem to people via putting them into a woman's body and having them experience typical sexist verbal abuse.  Because virtual reality reads as real to people, they experience the events more personally and powerfully.  The researchers think this would make a good rehabilitation tool for prisoners.  

While that's probably true, and a noble cause, why stop there?  Why not use it to teach people in the first place?  

There have been some attempts, via Google Glass, to teach autistic people parts of "the hidden curriculum."  Things like reading emotions and body language, what things to say in a conversation, and when to say them.  But Google Glass never got very far, and the cost of the technology was too high for all but the richest of parents.  Most autistic people don't have access to those resources.  

If, as I suspect, virtual reality becomes more popular and accessible, it may eventually become possible for programs like this to teach all kinds of things.  The Stanford programs could be only the beginning.  You could gameify having a back-and-forth conversation, giving extra points for remembering relevant parts of a person's life so your questions and responses are more intelligent.  As face-reading technology improves, a wider database of facial expressions could be developed so autistic people could have enough information to recognize emotions easily, even when the person is a stranger.  

You could even use virtual reality to teach life skills in a safe environment, or even remotely.  One of the barriers for autistic people in learning these skills is not having any familiarity with the skill, and being afraid to fail.  You could walk through the process of cooking a basic meal, doing the laundry, or feeding the cat, without there being a mess afterwards if something spills.  

There are a lot of possibilities.  In this time of quarantine, when we don't know how long this will last, when a coronavirus vaccine will be available, and what life will be like afterwards... it gives me hope to know that this technology is on the horizon.  

(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.)

Book Review: The Loving Push

The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults, by Temple Grandin and Debra Moore, is a book geared around teaching parents how to support their kids into adulthood.  The transition from child to adult can be particularly difficult for autistic and other neurodiverse people, especially when you mix in disability.

The typical story that comes up in the parent support group I attend is a "failure to launch" type story.  The child has some disability, but could probably live independently or elsewhere, with some supports.  Due to numerous setbacks and the utter inability of minimum wage to support that lifestyle, though, these people are typically living at home with their parents, and have no plans to move out.  They may even feel like they're incapable of managing life on their own, and expect their parents to handle that aspect of their lives forever.

Of course, no parent lives forever.  Nor does every parent feel okay with this lack of boundaries and the child's lack of independence.  So while some of these parents let the situation slide for decades, eventually it all ends the same place: "we can't do this any more."  Efforts might be made to nudge the child onward towards making a life for themself, but depending on how things have gone, it can be an uphill battle.

Hence, this book.  Its information is backed up with real stories from autistic young adults, their parents, and their friends/support staff/professionals.

In reading this book, I suspect that most of the information presented is useful for any kind of kid (or adult child, as some people call grown children that still rely on their parents).

• Neurotypical children may not have singular special interests that they're intensely focused on, but if you want to teach effectively or motivate someone, you still incorporate the things they're interested in.  
• Neurodiverse children of all kinds may run into similar barriers, such as repeated rejections, learned helplessness, depression, anxiety, and addiction.  
• Perfectionism and addiction (regardless of what kind it is) are poisonous to learning and growing, regardless of your neurology.  Autistic people may be more prone to Internet/gaming addiction than most, but there are many kinds of addiction, including TV, drugs, and codependency (always sacrificing your own health and wellbeing to help others.)  
• Responsibility, chores, and life skills like cooking, cleaning, and laundry are important for all humans, regardless of IQ, neurology, etc.  While a person confined to a wheelchair or mobility device may not be able to reach the high cabinets, they can still learn to cook or garden or do laundry if given the right tools and teaching methods. 

Read This Book If

You're a parent, professional, or support person for a neurodiverse person in transition.  Transition age can vary widely for neurodiverse people.  Starting earlier is better (the book repeats this frequently), but it is never too late to start learning.  This book will help guide you in supporting the neurodiverse person and giving them the nudges they need to move forward to whatever their best life looks like.  

Reading the Research: Kicking TMS into high gear

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 is what I've been waiting to see since I realized how effective LENS was in treating my depression and anxiety, and since I read Switched On by John Elder Robison.  

Stanford has developed a form of TMS, or trans-cranial magnetic stimulation, which treats depression.  It does so in a relatively short amount of time, without medication or need to spend money over a lifetime.  And this version showed a 90% success rate, on subjects that no other form of therapy could help.  

I've talked about the medication roulette, where people with depression spend copious amounts of money buying pills they'll need to take for weeks to find out if they'll help.  Often they don't, and then you need more pills, a different SSRI or other anti-depressant.  Repeat until your life implodes, the side effects wreck you, you run out of money, or you run out of options.  It's a very ugly, messy cycle.  

Neurofeedback and other forms of brain stimulation don't do that to you.  Some version of it can have you coming back week after week, but with others, like this one, you pay for a week's worth of sessions and the effects linger for years, or even a lifetime.  The up front cost might be expensive, but you save money, time, and suffering in the long run.  

This form of TMS will need a LOT more testing, on a larger range of subjects.  It will not likely keep the 90% success rate in larger populations.  Still, it's an incredibly promising start, and I'm hopeful that technology like this will become the gold standard for treating depression.

(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.)

Looking Forward, Looking Back (2020)

Normally I do this sort of thing in January, but because of complications hosting Chris' younger brother, it just didn't happen.  Then the coronavirus stuff happened, and now the future is really kind of uncertain overall.  Still, you can't just sit on your hands and expect everything to work itself out neatly for you, so here's my best effort at my goals and future planning.  Things may change, but that's life, and that's okay.

Typically I want my goals to be SMART: Specific, Measurable, Achievable, Relevant, and Time-bound.  This year, stuff is so up in the air that I'm not sure I'm going to rigidly adhere to those excellent criteria. 

2019's Goals:

1.  Exercise at least 3 days a week, at least a half hour each session, minimum.

I can't decide whether I succeeded here or not.  On one hand, I didn't have a regular Wednesday exercise day like I'd envisioned.   On the other hand, I definitely did go walking with my friend Tsushi nearly every week, and sometimes those times involved tramping through the outdoors picking wild food.

Life kind of went haywire starting around October in my personal life and in one friend circle, and I ended up being moving crew a lot for a significant amount of time.  It was great exercise.  On the flip side, I got the flu around that time.. which meant I got almost no exercise for a whole week.

I don't feel great about my progress on this goal, but in an effort to be kind to myself, I'm going to note that I technically achieved this... just not the way I wanted to.  One of the books I read recently notes that indoor exercise, the gym, my exercise bike, etc, is not really a good environment for humans, ie: boring.  So you want to do more with the outside.  I'm just not sure how I feel about going for a walk in biting winter winds.


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.

I succeeded!  And then promptly fell behind again!  But I did branch out to new stuff.  Sadly most of the blog-relevant podcasts turned out to be dead ends.  Still, I've gotten to bone up on a lot of more self-care relevant things, like mythology, books, and new/interesting ideas.  So, a success!  At least as written.  I don't know how feasible keeping up-to-date on 18 podcasts is, but that's how many I'm subscribed to.

If you have disability podcast recommendations, especially ones related to current news and issues, I'd love to hear about them.


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

This one I didn't entirely succeed at.  Or to be more precise, I hit a dead end.  The idea was to find stuff besides mold and the algae that messes me up, but in all honesty, we couldn't find anything.  *Something* is probably messing me up and making me generate so many histamines, but it's not my diet, and it's not really my bedding either, given that I wash that once a week in hot water.

We could still shell out to re-tile the master bathroom (an area that was noted to be slightly moldy in the house inspection), and that's on the list of home repairs I'd like to have handled, but it's expensive, and the money isn't there right now.

I'm stalled on the histamine issue, too.  Vitamin C doesn't seem to be doing the trick, so perhaps when I can breathe again, I'll look into trying specific herbs or other avenues.  I simply haven't had the energy since about October.


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

I did this!  And then there didn't seem to be enough work for me, so it sort of fell through after a few months.  So uh.  Success?  Failure?  Failcess?  I'd hoped to use this to get more hooked into services and people, but that didn't really happen.  So probably closer to failure.  I'm a little frustrated about this because I had a car and mobility, and now I don't as much, so trying to get a job at a further place would be significantly more difficult.

2020's goals:

1.  Gather and prepare more wild food.  

There's a few reasons for this.  First, it helps to have an additional food supply besides the grocery store.  We're not in danger of starving or running out of food money anytime soon, but stretching it as far as we can is smart.  Second, having a diverse diet is good for everyone, but especially people with unsteady biological systems, like myself and other autistic people.

This is a young dandelion greens salad I made a few weeks ago, with olive oil and salt. I'd like to eat more wild salads like this, but dandelions have to be picked very young or they're INCREDIBLY bitter.  

Third, the organisms that you come into contact with and consume in wild food can help strengthen and diversify your gut bacteria, which means less digestive issues.  This is very good news for me, because I have gut issues already and have for decades.  

2.  Pick up a volunteer or paid job.

Strictly speaking I already have this, at least in name, but in practice I'm just not sure how much work is actually going to come from it.  When the quarantine lifts, I may ask further in that organization.  I may also simply look into work unrelated to autism, like the local library.

My spouse is currently furloughed from his job, which is to say his job will be waiting for him in June sometime (hopefully).  Likely the local library is going to have a truly absurd number of job applications, on account of it being walking distance for a lot of folks.  Still, any income's better than none.  I have to think on it further, and there may be other places I could apply.  Libraries tend to be comfortable, safe places to me, though, and it's literally a mile's walk from my house. 

3.  Incorporate daily exercise into my life.

At the moment I'm not sure what this is going to look like.  I have Ring Fit Adventure, which I can use on days the weather is bad.  I have hiking/searching for wild food, which definitely qualifies as exercise.  I have my exercise bike and Dance Dance Revolution equipment.  And I have my bike.  So I do have options. 

What I'd like to do, I guess, is have at least 10 minutes of exercise built into every day (except Sunday).  That might be as simple as using Ring Fit every day, and whatever else happens, happens.  As video games go, it's kind and supportive while still being reasonably demanding, and you can absolutely work up a sweat playing it. 

I tend to do best with a schedule, so that's probably my best option.  And I should probably also build it into my morning routine so I have the good effects of exercise for my day, plus the accomplishment of doing that to boost my morale. 

My biggest irritation with it is that I have to move the coffee table to play the game, then move it back so we can use the space normally.  You'd think that wouldn't be much, but doing it day after day irritates me a lot for some reason.  Makes me not want to put the effort in. 

4. Survive the coronavirus/quarantine/etc.

This probably goes without needing an explanation, but the uncertainty of everything is kind of difficult for people that don't do well with change.  Such as most autistic people.  And myself. 

I'm less worried about physical needs, like food and shelter, at the moment, and more just entirely exhausted.  I'll write about why at a later point, when I'm not so emotionally overwrought about it. 

At any rate, with Chris home all the time now, and my still wanting to do this blog and possibly other work, there's going to be a lot of adjustments needed.  

Reading the Research: Autistic Friendships

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 does something I've never seen a research article do before: it accepts autistic friendships as valid and seeks to describe them, rather than pathologize or try to "improve" them by demanding they adhere to neurotypical norms.

I've never heard friendship described in quite the way this article does, with its talk about synchrony (or the sharing of emotions as well as experiences).  In thinking about my friendships, I'd tend to agree in noting that as the falling down point.  It can be hard to get to know me or even read my face.  I feel like I do an adequate job of displaying my emotional state now, but the way I react to things and think about things can be so dizzyingly different than typical reactions that it serves as a significant barrier to syncing up emotionally.  

That said... I can confirm, while growing up, that my autism was less a barrier to making friends than the expectations put upon me by neurotypical people.  Making friends when I was little was hard because I was rarely given the chance to even try.  Because I didn't act or react they way they expected, my peers avoided me (except for bullies).  The environments of schools were never ever sensory-friendly.  It was about all I could manage simply to survive the stated purpose of school: the academics.  

On finding your tribe: at this point, I can safely say that at least two of the people I became friends with in high school later received autism diagnoses.  Judging by my recollection of behavior patterns, I would say at least two more of those friends probably qualified as well.  None of us, at the time, had those diagnoses as far as I know.  So I did, in a manner of speaking, find my tribe... but without that knowledge of common diagnostic ground, we merely gravitated to each other on shared interests and common tolerance for less usual behavior.  

I liked the experimental programs they listed here, and I hope more of them become available to autistic kids.  Theater in particular seems promising: as it says in the article, theater can literally teach some of the hidden curriculum that autistic people don't innately learn.  I somewhat regret never trying it when I was in school.  The closest I got was being stage crew for a single production, and I wasn't even very good at that.  

All in all, this was a promising article and I hope to see more thoughtfully written and fundamentally accepting pieces like it. 

(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.)

Types of Stigma: Healthcare Practitioner Stigma

Type 7: Healthcare Practitioner Stigma

Healthcare Practitioner Stigma is when a health professional allows stereotypes about autism to negatively affect a patient's care.

When I first looked at this type of stigma, I wasn't sure why it was separate from public stigma and structural stigma.  I thought about it, though, and unfortunately, it's correct to have it be a separate category.  To explain why, we'll revisit Dr. Stephen Shore's often-quoted adage: "If you've met one person with autism, you've met one person with autism."

The Diagnostic and Statistical Manual, or the DSM, gives us words to describe different neurologies, mental illnesses, and conditions.  The World Health Organization puts out a series of numerical codes (ICD) to go with those words, which insurance and healthcare entities use.  Patients are coded with these numbers, which serve as a shorthand to who they are and how to handle them when those patients show up in an office.

I wrote a post about this back when I was working at an autism therapy center.  Four codes to summarize, in healthcare-ese, me as a person.  The same four codes a therapist might receive when taking me on as a client, or a doctor might receive when preparing to help me with a health problem.  When I went through school to receive my psychology degree, I was also taught about autism.  I didn't recognize myself in the diagnostic criteria, but it's what I was taught.

It is, in fact, what they're all taught, if they're taught anything.

With the diagnostic criteria being so unhelpful, and autism being such a broad and diverse group of people, it's maybe not surprising that healthcare practitioners would fall prey to making bad assumptions about autistic people.

The issue, of course, is that unlike random passersby, healthcare practitioners are trusted with the power to open and close doors to therapy and care.

If healthcare practitioners work on the assumption that all autistic people are dependents, or that all autistic people can or can't speak, or that we all suffer the same kind of depression, anxiety, or digestive disorders, their decisions will be skewed or even outright wrong.  Each autistic person should be taken separately, like any other human.  Every human has strengths and weaknesses, different biologies and different healthcare needs.

As a rule, autistic people tend to have more health problems, more fragile systems, and more challenges with mental health and wellness, so it's incredibly important to have competent healthcare practitioners who know to ask questions rather than making assumptions based on their schooling.

Yet of all the healthcare professionals I've had since getting my diagnosis, only one has made a point of asking lots of questions about me as a person, after I gave them my diagnosis.  Can you guess which one it was?

It was my therapist and LENS practitioner.  Y'know, the one doctor who has literally no excuse to not know better, given how many of her clients are autistic.

The size estimates for the autism population are still rising.  We need better understanding in our healthcare professionals.  Our lives and health depend on it. 

Reading the Research: Misguided Genetics Research Goes On

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 is an example of one of those fun (sarcasm) hide-and-seek games scientists play with autistic genetics.  

Scientists, at Autism $peaks' direction, have been searching for a genetic cause for autism for decades now.  They have been entirely unsuccessful.  The fact is that autism is not a singular condition.  We are all different, right down to our genetics.  Because the issue can't be dropped (Autism $peaks might make less money and their climate of fear and their massive money stream might dry up), scientists are instead trying to find genetic subtypes of autism.  

(If you're not familiar with why most of the autistic population holds Autism $peaks in contempt, please consider this short handout with all the information you need to know.  If you were planning on donating this Autism Acceptance month, please consider ASAN or AWN instead.)

I have yet to see an overarching summary of these subtypes in the research streams I follow, though I heard a bit about it a couple years back at the governmental research review conference.  I want to say there were at least 8 different types theorized, which is a lot of subdivisions.  

The thing is, these subtypes were all directly focused on the clinical definition of autism.  Which is to say, they were only interested in deficiencies.  There was no care for what these genetic differences might mean for being better at certain jobs, or what positive personality traits might tend to go with them.  All that mattered, once again, was how autistic people didn't live up to some imaginary perfect neurotypical experience.  

Would it be useful to know the exact number of ways genetics can change to produce autistic people?  Probably.  Might it help us know what to expect in terms of gut issues, anti-depressants, and other quality-of-life concerns?  Probably.  

Y'know what would be more useful?  Researching those treatments NOW, with even a fraction of the amount of money used to hunt these genetic differences.  Include autistic adults in designing these studies and in carrying them out.  Make those treatments and the information about them widely available to us and our families, so people suffering gut issues or mental illness or seizures can benefit NOW.

Happy Autism Acceptance Month.  

(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.)

Types of Stigma: Structural Stigma

Type 6: Structural Stigma

Structural stigma is the existence of institutional policies or other societal structures that result in decreased opportunities for autistic people.

"Institutional policies" is kind of a mouthful, so I'll start by pointing out that it's not just referring to mental institutions or whatever we're calling the modern day insane asylums these days.  It's also not just talking about sheltered workshops or group homes.

An institution, in the broadest sense, is stuff like churches, schools, hospitals, governments, and other organizations.  An institution is an organization founded around a purpose, whether that purpose is religious, social, educational, or some other reason.  Institutions have rules, bylaws, norms, and unspoken expectations.

There are a lot of kinds of this stigma in existence, but the one I hear about from parents most involves Medicaid.  You see, support services for autistic people cost money.  A lot of money.  Since most parents aren't independently wealthy, they cannot afford to pay hundreds of thousands of dollars per year for the services their kids need to thrive.  What's a loving parent to do?  Certainly not watch their kid suffer for lack of help, or burn themselves out trying to support the family plus act as their kid's only (untrained and uneducated) support full time.

Instead, the typical answer, at least in my state, is to apply for Medicaid.  The government has money set aside to pay for support services in situations like this.  It's less and less each year, and because of the US's eternal suspicion of the poor (because being poor is SO FUN (/sarcasm)), you have to jump through about eleventy billion hoops to acquire that support, demonstrating in excruiciating detail that yes, your kid really does need this help.  It's a process that can take years, and multiple rejections even though the person's need is real.

Unfortunately, depending on what kind of Medicaid you receive, there may be income limitations.  Literally, your family or the autistic person themself might make "too much money" to qualify.  Let me remind you support services can cost hundreds of thousands per year.  The amount you can't exceed per year to receive full support, if you're a single working adult? $18,000 a year.  So you could be making $20k a year, barely have enough to make ends meet, and yet be expected to pay multiple times your yearly income in services.  Apparently, this is "fair" by the government standards.

What usually happens here is that families and individuals on the spectrum need those services, and need to be on Medicaid to afford them.  They therefore quit their jobs or take massively reduced hours in order to qualify.  The types of jobs that make the cut for these restrictions are usually high stress, unfufilling jobs without hope for advancement or further training.  Even if advancement is available, the autistic person or the family may need to turn down those opportunities in order to continue to qualify for Medicaid.

Thus, one reason for the massive amounts of unemployment and underemployment in the autistic population.

Another easy example is the educational system.  It varies widely on the school system, but in many cases, "special needs" children are segregated 100% of the time from their typically developing peers.  Sometimes this is done after assessing the child's skills and abilities, but sometimes merely having a diagnosis is enough to mandate immediate separation from your peers.  Sometimes entirely separate school systems are involved.  Often entirely different curriculums are involved.

I'm not going to pretend the neurotypical school system is flawless and that it's appropriate for every child to learn everything taught in a typical school system.  The school system actually has serious issues.  However, inclusion is mandatory.  Curriculums that challenge and spur the growth and development of each child, are mandatory.  These things are not happening in most school districts, and as a result, autistic people do not learn as well or as much as they're capable of doing.

Effectively, school policies are stunting our educational opportunities.

Due to this lack, autistic people may have limited higher education options, or even none at all.  We might be denied a chance at trade schools, at colleges, or even at internships or apprenticeships due to our lack of good grades, lack of diploma or GED, and use of alternative curriculums.  You'll note this phenomenon, too, ties right back into poor or no employment options.

I've named two major forms of structural stigma here.  There are many more, from churches excommunicating autistic people or refusing to allow them into Sunday school to hiring policies that don't allow for neurodiversity overall.