Reading the Research: Psychology Has A Long Way To Go

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 underlines how far psychology has yet to go in terms of making scientifically valid diagnostic categories for mental illness and neurological differences.  This study focused on obsessive-compulsive disorder (OCD), which sometimes has a crossover with autism.  But it's also relevant because quite frankly, autism is a trashbin diagnosis.  

When a diagnostic label can be equally applied to myself (an independent, speaking adult with a house and a car) and to a 9 year old who cannot be toilet trained, has not progressed emotionally past age 4, and does not speak... something has gone very wrong, scientifically speaking.  That diagnostic label is all but useless.

I'd known this was the case with autism for years, but it surprised me that apparently the same is somewhat true of OCD and other mental disorders.  There are many kinds of obsessive-compulsive behaviors.  The stereotypical one is repetitive handwashing, but the article also calls out binge-eating, excessive shopping, and various types of addiction.  

Let me particularly call your attention to this paragraph:

"In the current study, patients met an average of 3.7 concurrent diagnoses.  Disorders are also highly heterogeneous -- which means that two patients might have the same diagnosis, but have little to no overlapping symptoms and might respond in entirely different ways to the same treatment."  

To me, there were two bombshells in this paragraph.  First, 3.7 diagnoses on average?  That's a lot of metaphorical alphabet soup.  Perhaps I shouldn't be surprised, given that I think they gave me 5 diagnoses at the end of my testing.  I reject one, but that still puts me at 4, which is right around that average.  In other types of science, you don't need 3.7 labels to describe a phenomenon.  You have a classification: meteor, and three types: iron, stone, and stony-iron.  We've been studying the human mind and brain for over a century, and apparently the best we can manage is 3.7 diagnostic labels...

...and secondly, those diagnostic labels aren't even self-consistent!  I'd always kind of assumed autism and ADHD were relatively new and not well understood, but that other labels weren't so absurdly different in terms of the mixture of people that fall into them.  Apparently I was very wrong, and much of this is definitely still theory, not practical application.  

I probably should have known better given how many different therapies there are for depression.  There's pharmaceuticals (many and varied!), neurofeedback, supplementation/vitamins, exercise, talk therapy (like CBT), ketamine, and deep brain stimulation, to name a few.  Here's a link to a similar "wow, this diagnostic label sure has a lot of different symptoms!" study for major depression.  

Apparently the human brain, being a self-reprogramming computer that generates consciousness somehow, is possibly the most complex thing we've ever tried to study.  I just hope, for all of our sakes, that it doesn't take too much longer to get a handle on what we need to understand to help people.  

(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 Do Excitement: Handling Emotions While Autistic

I had kind of an interesting and educational experience last Tuesday.  Briefly, I was invited to help lead and speak on a panel to educate med students about autism.  It was myself and three other autistic people.  This was, thank God, the last major thing this month besides a dual party for myself and a friend.

I wrote the bones of my speech the day before, the speech itself the day of, and then I spent another hour or so putting together a handout with further reading and the main points of the speech.  Because I've been a student and I swear to you, lectures are the least useful way to convey information.

After all this was done, I had about two hours before I needed to leave.  This left me sitting in anticipation.  I assessed the emotion absently, labeled it anxiety, and proceeded to put on depression music to shift my emotional state.  Basically it's the kind of sad/angry music you can kind of drown in, which helps you feel understood and also feel calmer, though not better.  I've done this before, and it works quite well.

But I thought about it as I listened to the music, and realized that I was probably going about things wrong.  The anxiety feeling was uncomfortable in its strength, but the situation I was heading to wasn't really a bad situation.  It was simply new and important.  If I kept the depression music on, I would be less anxious, but I'd also approach the situation with resignation and sadness.  That wasn't a good attitude to bring to these medical students. 

I also recalled the podcast I'd listened to a few months back, which mentioned that emotions can be boiled down to two spectrums: wound up-calm, and positive-negative.  Excitement, you see, is merely positive anxiety.  Physiologically, they're exactly the same.  The difference is in how you mentally view the situation.

This realization made me realize I honestly don't do excitement.  I do anxiety.  All excitement in my life has likely been mislabeled anxiety or worry because it's what I'm used to.  Granted, the excitement-to-anxiety ratio is probably heavily skewed toward the latter, but I don't honestly know. 

The end result was that I was so used to feeling bad and reading wound up as anxiety, that it didn't immediately occur to me that I should maybe just be happy for myself that I had this opportunity. 

After I thought about this for a while, I put on some more neutral, semi-wound-up music and sniffed my calming perfume scent to take the edge off my wound-up-ness.  I then began playing a favorite puzzle game on my phone until I could be distracted with other things and needed to go. 

I did manage the speech, though I was still pretty...well, it felt like anxiety again frankly, because there was a whole classroom of college-age students looking back at me.  I was a bit busy just trying to read the speech and not rush to question whether it was excitement or anxiety. 

That's something I'll have to look for, going forward.  I'm not sure if I'll continue to have to do it via deductive work (i.e.: this situation is positive, I should be excited not anxious), or if I'll eventually develop a sense for the difference. 

Either way, this is progress.  

Reading the Research: (Re)Building Hope

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 talks about the importance of hope in a therapeutic setting.  It also mentions hope's relationship to optimism and self-efficacy (in plain speech: how much you believe you can affect your life and surroundings, or how much control you feel you have).  The specific disorders studied were anxiety disorders, which occur alongside autism with a unfortunate frequency.  

For anyone who might not be familiar, Cognitive Behavioral Therapy (or CBT) is basically the go-to therapy in the current age.  There are a dozen or so schools of thought in therapeutic psychology, but when each was put to the test, only two consistently and repeatedly showed results: cognitive psychology, and behavioral psychology.  

The first focuses on analyzing your thoughts, identifying patterns that destabilize you and giving you mental tools to shift your thinking.  The theory is that if you shift how you think, positive change will follow.  The second is more interested in your behavior: changing what you do, or how you do it so it's more supportive to a healthy and happy life.  The theory is that if you positively change your behavior, your thoughts and life will follow suit.

Both theories worked, so people proceeded to combine them.  In addition, rather than hyperfocusing on a person's past, as some schools of thought did, CBT is firmly focused on the present.  The past is relevant because it's influenced the present, but the interest is improving the here and now.  The emphasis is also to help you develop your own mental toolkit, which can mean less need of therapists over time and more stable day-to-day living.  It's a good therapy, and I recommend it to anyone.

It's often the case that people only come to therapists when they're out of options.  At that point, their hope is a flickering candle, which makes it difficult to create positive change.  As such, a therapist's job is often to prop up the person's failing hope, and to offer more reasons to be hopeful.  Doing the work of the therapy, which creates positive change, can then lead to more hope and increased recovery, which turns into an upward cycle as it repeats. 

Results like this are probably why institutions upset me so much (I don't have personal experiences with them, unlike this person or this person).  They're the death of hope for the person locked away.  Institutions are psychologically harmful: they destroy self-efficacy and decay hope.  They don't allow for personal growth or improvement.  They are merely prisons for people who don't fit in.  This is one of many reasons why most autistic advocates call for the end of institutions.  

(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 Partner's Guide to Asperger's Syndrome

The Partner's Guide to Asperger's Syndrome, by Susan Moreno, Marci Wheeler, and Kealah Parkinson, is pretty much what it says: a book that tackles the challenges that may be faced by couples where one partner is autistic.  The scope of the book is somewhat limited in that it focuses intently on male autistic partners with female often highly socially-proficient neurotypical partners.  They acknowledge their advice here is limited to that situation, and autistic-autistic partnerships or female-autistic partners with male NT partners may have different situations to handle.

That said, some of the advice given here was broadly applicable regardless of the partnership composition.  There are certain tendencies addressed in this book that often apply to autistic people.  In many cases, these were exaggerated version of traits I sometimes display myself but could clearly see why they were painful to the neurotypical spouse or partner.  This similarity made the book rather painful for me personally to read, but I expect it would be rather enlightening for people who don't have an innate understanding of these behaviors.

Included sections are things like differences in communication, social skills, executive function, sensory processing issues, how to cope with stress, parenting, and common situations a NT spouse may find themselves in.  All included sections seemed highly relevant to the book's overall message.  The authors even attempted to give the book some balance by including a "positives and negatives" chapter about autistic traits.

I appreciated this effort to present the strengths an autistic partner can bring to a relationship, but I feel that overall the book focused intently on our deficiencies.  I felt rather sad and like I'm a broken human as I read the book, matching some of my tendencies to the stories of dysfunction in various real and fictitious relationships described in the book.

I feel like this wasn't really the authors' intent, and it's possible I'm being oversensitive on the subject.  After all, this is a book to help NT partners handle communication breakdowns and manage living with someone very different than oneself... it's not a book celebrating fully functional relationships that have few problems.

My sadness aside, the book had valuable (if rather brief) information on all the subjects it addressed.  I would suggest this as a starting point for a partner, and then to follow up on specific questions and subjects.  Like, if the autistic partner has severe rigidity, there might be specialized resources for that.  Or they might have touch sensitivity but not visual or sound sensitivity, so you might look into a book or expert who knows a lot about that subject.

The last thing that struck me about this book is that it strongly recommends finding three therapists: one for the autistic partner, one for the NT partner, and a relationship counselor for the relationship or marriage.  The authors also caution the NT partner to find a therapist that understands autism, because otherwise their concerns may be waved away as being a worry-wort or being overbearing.  I have no personal experience on the matter, but I can definitely see something like this happening, and I wouldn't wish it on anyone.

Read This Book If

You're the spouse, partner, child (if interested), or friend of an autistic individual.  Especially if the autistic person is male.  Even if they're not, the information here is valuable and presented with far less negativity and personal trauma than books I've read in the past.  I'll likely recommend my spouse read this book and see if the added perspective helps him handle my less normal moments.  

Reading the Research: Balancing Usefulness

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 one of those developments that makes me pause and wonder whether the pace of innovation is too fast for our good sense sometimes.  On the face of things, having some kind of automated alert that a nonspeaking autistic person is getting stressed or upset seems like a good idea.  And it's not entirely a bad idea, to be honest.  Potentially a lot of meltdowns could be noticed and avoided, which could mean less worry and less property damage/physical damage to people.  

My worry here is twofold.  First, a 60% rate of success is barely better than flipping a coin.  A lot of things can make a person sweat, such as "eating spicy food," "being in a room that's too warm," "being sick," and "drinking a cup of coffee."  This is not, on the whole, a great indicator of an incoming problem.  In particular, this tool wouldn't seem to be terribly useful when a person is exercising.  They'd already be sweating from the exertion, which would set it off without there being necessarily any developing "behavior problems."

Yet in situations with autistic people prone to physical outbursts, the end result is that it will be treated like it's reliable, simply to avoid the possibility of property damage or self-injury.  This is especially true in institutions, where the person's physical wellbeing is very much secondary to problems they might cause.  You might end up with autistic people being straitjacketed or sent back to their rooms simply for reacting with happy excitement to another person or a favorite game or TV show.

My second problem with this idea is this: it can and will stand in for actual communication.  One of the researchers said this: "Individuals who are severely affected by autistic spectrum disorders are often unable to verbally communicate their discomfort when they become stressed" (My emphasis added via italics). Verbally communicate. Neurotypical people are so hyperfocused on verbal communication.

There are lots of ways to communicate that you're not doing well, including pointing to a face on a chart, using an app on a tablet, or waving at the relevant caretaker and then making an unhappy face.  These methods of communication are all the more important when it comes to nonspeaking autistic people, and paying attention to them is mandatory.  But it seems some people would rather wait for a voice from heaven to tell them, verbally, that something is up rather than simply using their eyes or teaching how to nonverbally communicate their emotions.

Maybe this technology, instead of being used as an alarm system, could be a teaching tool to help autistic people recognize when they're getting upset.  But at least for the moment, that's not the world we live in.

(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.)

Worth Your Read: Forced Friendships

http://www.thinkingautismguide.com/2019/08/forcing-friendships-doesnt-equal.html

This week's article is valuable for several reasons.  First, it contains a valuable perspective from a black mother.  Autism is often a "white male" condition, in that we often assume people who have it are those two things.  The thing is, that is increasingly not the case.  I'm female, and this mother and her son are black.  These experiences are just as valid as that of the more visible, stereotypical autistic people.  It's valuable to listen to these perspectives because it teaches us more about autism as well as broadening our understanding of what it means to be human.

The second reason is that this article talks about consent in terms that people may not consider them.  Consent, broadly, is the idea that people should be allowed to give or deny permission for things relating to themselves.  It was first brought up in terms of sex and sexual activities (ie: teach this and use it to identify and avoid rape).  In very very brief, if freely given and enthusiastic consent for the sexual activity is not obtained from all parties, those activities are rape against the non-consenting people.  Coercing, begging, or guilting a person into giving consent to an activity does not count as receiving consent.

The idea has since broadened to less intimate activities, including hugs and other forms of touch.  There are people, myself included, who can react very poorly to sudden touches.  This isn't just autistic people, anyone with touch sensitivities, or people who have suffered physical abuse, can be affected like this.  Even touches that are seemingly harmless, like hugs or a hand on the arm or shoulder, can startle, upset, and even hurt the person.  Because of that, it's wise not to assume a hug will be welcome, and instead ask whether you can hug the person.  This is respectful of the person, their boundaries, and their bodily autonomy.

By the way, this idea of bodily autonomy extends to family interactions as well.  Uncles, aunts, cousins, grandparents, even direct parents, may feel the need to express affection via hugs or other familiar touches.  They may consider these touches their right, being family.  I have to tell you, a touch doesn't stop hurting just because it's someone you love doing it.  These well-meaning gestures of affection can come off as overwhelming, agonizing, selfish demands, and the autistic person may come to dread them.  Respect your child's right to say no to these gestures, and help your relatives understand and respect this right as well.

This mother takes consent a step further.  Although autistic people can have trouble with having and keeping friends, she considers it her son's choice whether to spend time with people or not.  If her son wants to go to an event, she arranges for him to be there, and if he doesn't, she doesn't force him to go.

This seems like such a simple idea, and it's one that most adults take for granted.  But as she points out, the parental hope of "normalizing" the autistic child can overwhelm any caution or respect for the child's boundaries.  While it's true that  practice with social skills is helpful for learning and growing those skills, forcing the practice can absolutely backfire.

Personally, I think if my parents pointedly left with me "normal children" expecting me to "become more normal," I would internalize two things:

1. My parents do not love me.  They may say they do, but their eyes and hearts are fixed on some imaginary, non-autistic human being they think I should have been.

2.  I am unacceptable the way I am.  I must change who I am in order to be acceptable and worthy of love.

Needless to say, I hope, these are really not the messages you want to give your already-struggling autistic children.  So please don't.  Please follow this mother's advice: consider their wants and how they communicate.  Teach consent and bodily autonomy.  Respect their right to say "no" to things.  This is how you keep your children safe.  

The Last Legwork and Life?

This will probably be the last L&L for a while.  I'm suffering burnout, which makes me want to cut down on things so I can recover. 

Also, while I suppose technically my day-to-day life provides some insight on how autism can change your experience of things, I just don't feel like it's a super valuable part of the blog overall.  The hope was to make this blog a resource for parents, teachers, fellow autistics, and other interested parties, and I'm not sure a journal-style regular segment is really the most useful part of that. 

If you have strong feelings on the subject, feel free to email me at therealisticautistic(A T)gmail.com.  I'm willing to listen to my readers.  On the whole, though, this blog really hasn't garnered much by way of comments, feedback or really anything at all beyond my immediate family, so I'll be surprised if I receive an email. 

I don't anticipate never writing an L&L again, I suppose, but I feel like it'll probably be more like a bonus, when something actually happens in regards to my career or health.  

Reading the Research: Unreliably Tested

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 underscores how far we have yet to go in terms of early diagnosis for autism and other differences.  Psychology is a very young science, particularly the study of the brain and how people work, so it's understandable that sometimes things simply don't work the way you expect them to.  

This test, the M-CHAT, is a widely-used screening test given to toddlers when there's a suspicion.  It's usually administered by parents to their kids at home, and used to rule out autism.  A positive result is a good sign that you should take your kid to a specialist to get a proper screening with a different test.  A negative result was supposed to let you and your kid get on with your life, unworried about that particular developmental complication... 

As it happens, that negative result apparently isn't to be well-trusted.  The test was supposed to detect 91% of children with autism, but in reality appears to only detect about 40%, which you'll notice is quite a drastic difference.  This is a reoccurring theme in "my family's life with an autistic ___" books, but if your parental gut continually tells you something is unusual, it probably is.  

Now, please understand that while it can be very helpful to catch autistic differences early, which lets you start therapy and support services early, it is not a death sentence or the end of the world if it's missed.  Obviously, I survived nearly to my 21st birthday without an ounce of extra supports, and there are many adults like me.  

These days autism is much more well known than it was when I was growing up, and it's much more likely that someone will say, "hey, so you/your kid, are you/they on the autism spectrum?"  Or some concerned teacher will notice things, or their school performance will be spiky and merit extra supports, which raises the question of what's causing these higher needs.   So there's a lot of chances for an autistic kid to be noticed and get the support they need to live their best life.  

I would guess, if pressed, that the makers of the M-CHAT likely didn't use a proper cross-section of the US population when testing their creation.  Often your test sample is white, middle class families who have time to do this sort of testing, rather than a broader, racially mixed and diverse in household income sample.  This is actually a really major problem in psychology as a whole.  Research is often conducted in colleges, and who mainly has the money to send their kids to college?  Middle and upper class white people.  So those college kids tend to be the test subjects for psychology research.  This is sometimes called a "sample of convenience."

It leaves a lot of people in the lurch, and makes for a poorer, less scientifically rigorous result... and this disappointingly unreliable test is one of many results affected.  

(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 Autistic Brain

The Autistic Brain: Thinking Across the Spectrum, by Temple Grandin and Richard Panek, is a book that explains the research, progression of thought, and advancement of autistic people over the time the primary author, Temple Grandin, has been alive.  This book is about six years old, so while it doesn't have the latest research, it's still valuable in terms of the discussion and overview.

Dr. Grandin is a voracious reader and a scientist, so she's kept abreast of research as it's developed over time.  Fortunately for parents and non-scientists everywhere, she's been able to write in terms that laypeople can understand.  Rather than make her readers sort through overcomplicated word choice, abundant acronyms, and obfuscation of ideas, she simply outlines the major research focuses, discusses them, and then discusses the "what next."

This is a two part book: past thinking and research is part 1.  It began with a summary of the history of autism, followed by a section on brain scans, then genetics and DNA, and then sensory sensitivities.  Each subject is discussed in enough detail to give you a clear picture of what's happened in that area.

The second half the book is more philosophy and building on the past research and ideas.  It's the "now what?" that followed the "where we've been."  Again, all of this is quite approachable and readable for a layperson, which I'm particularly appreciating after having to read so many words in scientific writing style.

The most notable section to me in this book was near the end, where Grandin discusses autistic thinking and strengths.  In a past book, she theorized that autistic people think in pictures.  She herself does that, after all.  The thing is, I don't.  At least, I mostly don't.

I think in some absurd combination of concepts, music, flavors, pictures, patterns, and words.  Grandin revisits this idea in this book, and corrects her initial assumption.  She now theorizes at least three types of thinkers.  While I still don't think I'm any of these theorized thinker types, I appreciate that she's willing to correct her mistake and rethink her ideas.

Mind you, I still think she has a ways to go, but in truth, I'm not sure I'd do much better in her place.

Read This Book If

You have an interest in learning the history and major research focal points of autism, without having to hunt down the research yourself.  Grandin and Panek do a fantastic job presenting that information to a wide audience.  They then build on the ideas presented to help answer the question of "what do we do now," tackling subjects like inclusion, employment, and quality of life.  I appreciated the effort the authors put into trying to include the whole autism spectrum: speaking and nonspeaking, savants and non-savants, and thinkers of all kinds.

Legwork and Life, week of 10/2/19

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.

"Recovering" is the word for this week.

The DC trip for the Autism Research Program went pretty well.  As in the last couple years, there were a few familiar faces as well as plenty of new ones.  I'll post about the program in more detail in an upcoming Friday post, along with the press release and such.  

The worst part of the trip was the travel, both to and from.  One of my flights home got canceled, in fact, due to nasty thunderstorms.  About the time I found this out, I also misplaced my driver's license, which nearly led to my having a meltdown in the airport.  Fortunately I was able to move myself off to a corner and upend my suitcase until I found it.  Thereafter an airline personnel was able to find me a later set of flights, which got me home about six hours later than I should've gotten home, but at least I did get home.  

Of course, as soon as I got home, my period started.  So I then spent the next couple days miserable, pained, and exhausted.  My brain has flatly refused to work for almost the entire week so far.  I'm really hoping this is temporary, because there's a lot of things I should be doing and haven't been able to.  It's kind of messing with me and making me feel like a failure.  

The histamine situation doesn't have a clear solution.  I'm going to try adding extra vitamin C to my diet.  I guess there's a certain threshold you can normally add before you get unfortunate side effects, and we don't know what mine is right now.  It's possible that I'm not at my vitamin C threshold, and adding more will help my body process all those histamines it's generating, which then make my attempts to exercise miserable.  

It's also possible that I'll need to try a DAO supplement, which is basically the substance your body is supposed to produce to prune down histamines on its own... but some people simply don't produce enough of it, so the histamines build up.  So that might be my problem also.  We simply don't have enough information.  

The vitamin C is the cheapest option, so I'm starting with that and praying it works out.