Reading the Research: Biomarkers and "over 50%"

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 mostly makes me shake my head, but it does have some merit.  Just not the merit they're crossing their fingers and praying it has. 

A perennial concern in some autism circles is trying to make autism into a medical diagnosis.  To that end, millions of dollars have been poured into trying to find biomarkers, or biologically testable differences.  The kind of things that blood tests would pick up, so you could just give the person a blood test and then rubber stamp the person autistic or not based on the results. 

...Naturally it isn't even slightly that simple.  Autism is not really in your biology, it is your neurology: your brain, not your body.  In addition, there are a lot of factors that go into whether someone is autistic or not.  The increase in the autistic population is not a question of heavy metals or flame retardants getting into our bodies, so much as it is the culmination of those plus air pollution, degenerating systemic nutrition and diets, a better understanding of neurology and what autism can look like, and even genetics. 

Genetics.  As it turns out, autistic traits have been in the human genome for a long time.  Autism itself may have been a survival mechanism, gifting humanity with specialists in valuable skills (such as reading the stars in order to navigate by boat).

The article stresses the "over 50%" success rate in detecting autistic people.  You know what else has about that success rate?  Flipping a coin.  This is not a good test of whether someone is autistic or not.  Such is their desperation to find a medical test to diagnose a neurological difference, that 53% becomes something to be boasted about.  Yikes. 

Coin flip aside, this isn't a completely merit-less study.  You see, autistic people come with a variety of biologically unusual features.  It varies on the person, with under- and over-sensitivity to sights, sounds, smells, and even touch.  Some autistic people do poorly unless they're on gluten-free, dairy-free diets.  Some of us have unusual food allergies, or other amped up allergies (like my allergy to the algae that grows in my back pond...). 

If the researchers here have come up with categories of biomarkers, those categories could be used to figure out what diets, allergies, and sensory issues might go along with those categories.  Basically, blood tests could be used to improve autistic lives without years of painstaking arguments with doctors, subjective reports, disbelieving specialists, etc. 

What we need now in autism research is not more diagnostic tools, but ways to improve existing autistic lives.  Maybe someday researchers will actually listen to us on that point... 

(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: Autism in Heels

Autism in Heels: The Untold Story of a Female Life on the Spectrum, by Jennifer Cook O'Toole, technically falls into the "my life with autism" category of autism literature, but it is so much more.  Besides being what it says on the tin: the story of an autistic woman rather than the stereotypical autistic guy, it's also the story of a mother of autistic children, the story of a wife of an autistic man, the story of an abuse survivor, and the story of a survivor of self-harm via eating disorder.

Jennifer O'Toole is a lot of things, as a person, and this book is a look into many of them.  It was also painfully familiar to me in a lot of ways.  The difference is that her story is moreso than mine; she reached more tremendous highs and plummeted to significantly more painful depths.

A major difference here is that while the author embraced her femininity, using it as a pattern and a framework with which to understand her life and self, I ignored mine until I found a word that actually does describe my gender: agender.  Effectively, I would most prefer you leave your gender expectations at the door when meeting and interacting with me.  I am not masculine, or feminine, or both.  I am "no thank you."

I was fortunate enough to be born to parents who allowed me to be myself, even if "myself" was painfully unfashionable and insisted on wearing sweatpants into high school.  Because my parents didn't actively enforce gender roles, I was able to grow without pretzeling myself into stereotypes I hated, or dealing too much with dresses, skirts, high-heeled shoes, and a million fiddly accessories which only lend themselves to accentuating the fact that that women are reduced to the attractiveness of their bodies.

A lot of autistic people find themselves in the gender minority camp, apparently.  But we live in a world where gender roles and stereotypes are still very much in effect.  And of course, as the book points out, many autistic people are born genetically female and not recognized as autistic.  So a book like this is exceedingly valuable, because in Jennifer's experience being autistic and female, we can find echoes of our own lived experience.  And not only that, but she also points out her pitfalls and failings honestly, which allows us a better chance to avoid those pitfalls.

I found this a difficult book to read.  Not because of the writing style, which was quite easy to read.  Not because of the length, which was less than 300 pages.  It was the subject material, which often struck very painfully close to home.  The question of, "how can I be so smart and still feel so stupid?" is all too real to me.

"Spiky skills" is sometimes how this phenomenon is phrased, where the person has great strengths in some developmental areas and skills, but in others, barely scrapes by.  In autistic people, the obvious example is being a trivia god/goddess (whether that trivia is trains, edible plants, or classical literature), but never knowing what to say when someone is upset, or even what upset them in the first place.

The author focused less on the social difficulties, and more on Executive Functioning difficulties.  Charmingly, she does so by starting with Santa.  I especially recommend reading this section.  It's shockingly easy to read for a lesson on brain science, first and foremost, but also because Executive Function isn't well understood despite being incredibly important to understanding autism.  There's a lot to unpack and understand about it, and doing so can help you understand your autistic loved ones better.

I honestly don't believe I've read a clearer, more approachable description of Executive Function anywhere, ever.  So while I strongly recommend the entire book, I wish that particular section was required reading for every autism-related professional, and given to every parent and newly-diagnosed autistic person.

Read This Book If

You are autistic, especially if your sex or gender is female or female leaning.  Also read this book if you love someone who meets those criteria.  Professionals and teachers would find this book useful in broadening their understanding of the autism spectrum.  It gives the lived experience and "inside the mind of" for a person who has lived a lot of life, both highs and lows.  

There is, as of yet, not nearly enough understanding of autistic women, and so accounts like this are incredibly valuable.  This particular account is especially so, but be warned: you may find yourself in tears in places.  My (very short and exclusive) bookshelf will be graced by a copy of this book in a few days, and it has rightfully earned that place.

Reading the Research: Keeping Tabs on Ketamine

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 another step forward in getting better, faster treatments for depression to the people that need them.   Autistic people are chief among those, as we tend to suffer higher rates of depression and anxiety than the general population.  Now, in the current circumstances with coronavirus isolation looming large, depression rates are up, and the need is greater than ever for fast, effective treatments.  

I've always been kind of horrified by the common strains of anti-depessants.  They take a month to kick in, typically come with side effects that are almost as bad as the thing they're treating, and your chances of getting one that works for you the first time are minimal, even with a competent doctor.  You can go through a dozen anti-depressants before finding one that works.  Or you might never find one, because our current anti-depessants simply don't work for everyone.  We have theories about how depression works and how to treat it.  Compared to the very sure, known treatment for things like influenza and chicken pox, it's vastly disheartening.  

So when something that works fast for depression comes up, I really have to wonder why people didn't fast-track it and get more and better tests done.  When this drug, ketamine, works so quickly that you can use it in the ER to help suicidal people stop being a risk to themselves...  why would you wait years to explore it?  

It's probably money.  At least in the US, that's usually what it is.  In any case, this study advances the understanding of how ketamine acts so quickly.  The researchers make noises about ketamine's drug ranking, which would hold a lot more weight with me if marijuana wasn't ranked as a Schedule I (dangerous; high potential for abuse) drug.  Also, admittedly, it would mean more to me if I didn't know that in the right quantities, poison becomes medicine and vice versa.  Also also, that literally anything can be addictive, from food to TV to exercise.

I'll be interested to see if they do manage to synthesize a new class of drugs based on how ketamine works.  But in all honesty, this is not where I see the future of treatments for depressive disorders going.  I strongly suspect the data will show that neurofeedback and other forms of brain stimulation like TMS are far more cost-efficient for the patient, as well as having long-lasting effects.  Combined with effective therapy, like Cognitive Behavioral Therapy and other data-proven schools of thought, the person would be given the best possible chance to improve.  

I do see ketamine or similar drugs having a place in the future, though.  Acutely suicidal people, people who go to the ER or to mental healthcare in order to get help could use this fast-acting relief.  If you keep the person from harming or killing themself, they can get their feet under them, get into therapy, and get set up with brain scans and brain stimulation.  All that would put them on the path to recovery and a better life, which is what any decent person would want for others in that situation.  

(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.)

"Rehoming"

Hey folks?  Raising special-needs kids is really hard.  We all know this.  Sometimes people need extra support to manage the task, like therapy, scheduled self-care time, respite services.  That is okay, and normal. 

Sometimes, people simply aren't equipped with the resources they need to raise a child.  That's less normal, but it does happen.  In that case, the correct response is to contact an agency that's experienced in handling these things...  not to hand your child off to some random people on the Internet.

This is apparently horrifyingly easy to accomplish, thanks to the convenience of the Internet.  And naturally, the folks often looking to receive children this way aren't... exactly... star parent material. 

Here's a summary of an investigation into one child's experience with "rehoming" from Reuters, plus significantly more data from one online marketplace.  While the article mainly focuses on children adopted from overseas, the majority of the children "rehomed" like unwanted dogs and cats had some form of listed special needs... and the vast majority of the rest didn't come with any data on the subject.  Personally, I'd bet at least half of the "unlisted" children had some form of neurological difference or mental illness. 

I don't think I should have to say this, but: children are not pets.  They are not ornaments to boost your status.  There's a word for treating children like this, and that word is "monstrous." 

There are reasons for the laws and red tape that guard the process of giving a child up for adoption, and it's to prevent those children from becoming trafficked into the sex industry, abused by people unfit to care for even animals, or even being murdered and simply disappearing. 

If you, or someone you know, is overwhelmed by the task of parenting someone with autism, special needs, etc, that's okay.  There are options available to you. 

In Michigan, you can get help through your local Community Mental Health.  They can provide respite care and help you get support services for yourself and your child.  If you adopted, the agency that helped you adopt will likely have some supports to help.  For example, Adoptions From The Heart has this page and Adopt US Kids has this one.  Michigan also has an organization called MARE that provides resources as well as arranging for adoptions.

MARE also has links to resources in other US states here, and for traveling military members.  You may also receive assistance here.

Please remember that needing help raising a child is not failure, it is life.  The saying is "it takes a village to raise a child," and most of us these days don't have social circles as wide as a whole village.  Seek these resources to support yourself and your child(ren), and recommend them to people who are struggling.  

Reading the Research: Mindful in School

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 mindfulness as a tool to help autistic students "take a break" from the demands of life and school.  While in-person school is not currently a thing, it's valuable to have the ability to take a moment for yourself in home schooling, when on an outing, or really just any time the rigors of life get to you.  

It's not unusual for autistic people to get overwhelmed in the course of daily life.  The world isn't built for us, after all.  Having a safe place to retreat to can be invaluable to staying sane.  Sometimes, however, you can't physically remove yourself from a situation.  Meditation or other forms of mindfulness can stand in for that, or just allow you to take stock of how you're doing and find the words to convey that state.

It's also typical for autistic people to have a harder time with planning, emotion recognition and control, and anxiety... so adding in something to school that boosts these skills seems like a no-brainer.  In typical fashion, what's good for autistic people is often good for people overall.  Adding mindfulness training to all schools would likely have major positive effects on grades and student learning.  

I had no such opportunities when I was in school, and I suspect my grades (and mental state) suffered as a result.  Unlike many autistic kids, I don't think I came home from class and imploded, leaving my parents to clean up the mess... but that situation is distressingly common, and mindfulness might help alleviate the tension and stress before the autistic person reaches that point.

It remains to be seen what schools are going to look like next fall, and whether home schooling is going to be the "new normal" (hopefully not: most parents are not equipped to be teachers).  But it's my hope that the focus on school, whatever it looks like, can be less on standardized tests and grades, and more on student wellbeing and skills they'll need as adults.  

As is required every time I talk about improving schools, please watch this insightful Youtube video about changing what schools teach.

(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.)

Magazine Review: NYT's Understanding Autism

While in the checkout line at my local super grocery store, I happened to spot this:

I typically don't find anything of interest in checkout lines, especially not things related to autism, so I was rather surprised.  I decided to buy it (rather expensive, at $15!) and find out what the New York Times thought was essential for people to know about autism and people like me.

The intro article was by Steve Silberman, which was a promising start.  He's known for his support of the wider autism community and his care to point out that autism has been in the human genome for hundreds, if not thousands, of years.

On the whole I approved of most of the intro article, though I thought describing Andrew Wakefield's set of case studies regarding the MMR immunizations and autistic traits as "launching a propaganda war" and Wakefield himself as a "charlatan" was a bit much.  There was also a very brief mention of Dr. Asperger's link to the Nazi party, which kindly described that as "shadowing him" and politely failed to mention the fact that Asperger literally sent less verbal autistic children to death camps.

After the intro article, the magazine went more into short "my life/my family's life with autism" stories arranged into categories, such as  "Autism and Science," "Child and Family," and "Aiding the Autistic."  I was pleased by the number of women included in the stories, and there seemed to be some effort to include people of color within the pages as well.  Since autism is not a "whites only" condition, I'm glad to see this effort to show more than just the usual faces for autistic people.

There was a somewhat of a bias in the article towards employing autistic people in tech jobs.  While some of us can make livings that way, it's not true that all of us can or even want to, even when the appropriate work environment is provided.  So I found that a limiting factor of this publication.

Regarding the article on autism-friendly travel, it talks about SeaWorld Orlando, which I visited very early this year.  The article seems to imply that the entire of SeaWorld is now certified, which... surprises me, given the noise level of the place overall.  I did visit the Sesame Street section, which was a bit better and had other amenities, including a sensory-friendly quiet room and a family resting area.  It seems like the certification only requires a single quiet room for an entire park, which...  seems excessively minimal to me.  SeaWorld is enormous and exhausting to walk through.  I'd honestly argue for one quiet room for every two bathrooms...  But I'm probably asking a bit much.

I was rather disappointed with the science aspect of the magazine.  Much of the most promising research into autism is now done with brain scans and various forms of neurofeedback and brain stimulation.  The only things covered in this publication were genetics (still basically a dead end) and chemical exposures during pregnancy (which is a great way to guilt parents- very unhelpful).  Those two things were basically it for the science section, save for a little blurb about how the MMR vaccine doesn't cause autism.

Where is the interview with John Elder Robison about his experience with TMS?  Where is the discussion of the interesting differences in brain anatomy we can see on brain scans?  Heck, where's the discussion from the autistic community on neurofeedback?  I have some notable things to say, like how I can now smile at cameras and babies, after almost 20 years of being unable to.  Are these too new, too unbelievable, too scary?

The highlight of the publication, for me, was an article called How to Meet Autistic People Halfway.  It talks about how autistic people are social, but our mannerisms and communication skills may make it appear otherwise.  This quote was what really made the article for me:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors, and eventually, social withdrawal. 

As an autistic participant in one study explained, "I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior.  There's a point where you say, 'To hell with it, it's impossible to please you people.'" 

This sentiment exactly is where a lot of autistic adults end up, myself included (to some extent).

Worth Your Read?

Eh...  I dunno if I'd spend $15 again on this magazine.  It had some good things to say, including pointedly noting that autistic people can also be female, a piece about how autism is badly portrayed in popular media, and of course, "To hell with it, it's impossible to please you people."  I was very disappointed with the science section of the magazine, as it lacked... well, really anything of recent note.  A piece on TMS, neurofeedback, or even brain scans would have been appropriate, but all they wanted to talk about was old news: genetics, vaccines, and chemical exposures.  Yikes.  

This honestly struck me a publication that's less of a "oh, autism, what's that?" kind of deal, and more, "here's some things to think about regarding autism that you might not have before."  Which is fine, but it doesn't strike me as useful for harried parents or even autistic people ourselves.  So I guess this publication was more for special education teachers, professionals, and "vaguely interested yet already somewhat educated" relatives and others.   

Reading the Research: Eating Disorders

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 had scientists wondering about the relationship between eating disorders and autistic traits.  It seems eating disorders are common in autistic people, so things like anorexia, bulimia, pica, and probably the most common-to-autism one, avoidant/restrictive food intake disorder (an example being the "white foods diet" of milk, cheese, macaroni, bread, etc).  I have an answer as to why, albeit not one that would be acceptable to publish in a research paper without, y'know, actual data to support it.

To be autistic is to live in a world unsuited to you.  In most cases, that world rejects you, whether you try hard to fit in or not.  The rules of this world are typically not made clear to you, but you're expected to understand them and follow them.  Anything less than perfect compliance is followed by closed doors, weakened relationships, and even outright punishments.

Being put under that kind of stress is painful and stressful for any human, naturally.  Add in the garbage food that's endemic to the US diet, things loaded with pesticides, herbicides, food coloring, and nutrition-less white flour and sugar, and your experience gets worse and worse.  Your senses malfunction.  You have a harder time focusing, and thus succeeding in school.  It all becomes this maelstrom of exhaustion, stress, anxiety, and eventually, depression.  You have no control over yourself or your life.

No human thrives without some control over themselves and their lives... and eating disorders can provide exactly that.  You can't control the people at school, or the expectations put on you at home, but you can generally control what you put in your mouth.  So that's what some people do.

This study seems to have addressed the question of whether autistic traits precede eating disorder traits (not surprisingly: yes).  This would follow with the understanding of autism as an innate, from birth, condition.  Eating disorders, on the other hand, tend to develop later, in childhood at earliest.

The other notable thing about this study, to me, was its note that the interventions typically used for eating disorders don't help autistic sufferers nearly as much as they do everyone else.  There are biological factors and processes that likely figure into this, such as the fact that some people don't digest dairy and gluten properly.  Instead of turning it into energy, their bodies turn it into an opioid, which... naturally, does not go well.

I hope to see more research like this in the future.  While there are many comorbid conditions with autism, eating disorders are remarkably common, and make our lives and our parents' lives much worse.  With work, we might understand how to treat these so meals never have to be a battle.

(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.)

Trying Intellicare: App Suite for Mental Health

This week I tried a set of apps meant to help combat anxiety and depression this week.  I found them in a press release from Northwestern University while on my hunt for decent research to present to you for Monday posts.  You can read about the apps a bit more here and here.  The article points out that the app is especially useful now, during the Coronovirus pandemic, because more people are suffering mental illness and everyone has reduced contact with their support networks.

I've done a similar app review with Woebot, and also Wysa in a less thorough manner, but neither really helped me that much.  Which isn't to say either app isn't helpful overall, it's more that they were geared towards different groups than me, specifically.

At any rate, I opted to try Intellicare because the suite of apps interested me, and because after a very careful examination, it seems Intellicare does not sell your personal data or even share it unless demanded by law.  Their privacy policy wasn't in plainspeak, but neither was it particularly long or onerous to read.  So that was something.

The Apps

I downloaded four of the six available apps.  The hub app was mandatory, of course.  The five additional apps are:

Day To Day, the app that teaches coping skills and gives information on techniques and things to try during the day.  I chose to try this one.

Daily Feats, the app that helps you celebrate your accomplishments and prods you to do some basic self-care.  I chose to try this one as well.

Thought Challenger, the app that helps you challenge negative thoughts and control your mood.  I don't currently suffer a lot of negative thoughts other than boomerang memories (and even those are rare), so I did not download this one.

My Mantra, the app that helps you set a guiding phrase or goal.  I chose to try this app.

Worry Knot, the app that teaches you how to manage your worries and helps you spend less time on them.  I chose not to try this one, as I'm not prone to spending lots of time worrying.

Starting Off

The first thing the Hub app did was present me with a questionnaire, to get a baseline for how I was feeling.  The questions were easy to understand and the given answers were understandable and distinctive.  I ranked as slightly anxious and moderately depressed, which is about right given my diagnoses.  Each week, the Hub app is supposed to have you retake the questionnaire, which can then show you your progress.

I had trouble with the Hub app.  It lost my questionnaire results after I loaded it up for the second time.  After a couple days, it wouldn't load up at all.  I wasn't thrilled, but the other apps work independently from it, so it's not the end of the world.  Being able to track my mood climate week-to-week would've been nice, but since my trial period for this app suite was just over a week, it's not like it would have given me much data anyway.

I opted to create my own mantra in the My Mantra app: "I am a worthwhile person."  I sometimes struggle with personal worth issues, so it seemed like the best place to start.  The app gave numerous examples for your mantra, such as, "I am strong," "I am loved," "I will create," and "I am generous."  The app then prompted you to think about your mantra and take pictures throughout the day of things that support that mantra.

The Daily Feats app came with four basic "feats" or healthy goals to begin with.  These were: "I completed a task," "I did something physical today (even just walking)," "I smiled at another person," and "I ate something healthy."  For my own personal edification, I added "I tended my plants today" and "I did 5 wall pushups and 10 situps today."  I wasn't great about handling the lattermost, because I didn't assign a time of day to do them.  Also doing situps hurts my tailbone for some reason.

No special setup or input was needed for Day To Day, beyond telling it my waking hours.  This let the app calculate when to send me the next bit of knowledge about the skillset of the week.  The first week was called Challenge Thinking, and revolved around noticing, understanding, and challenging negative thoughts.  This was not super relevant to me personally, but Week 2 (Cultivate Gratitude) and Week 3 (Activate Pleasure) struck me as more useful.  Unfortunately, there was no way to hop weeks.

Observations/In Practice

One of the things I noticed early on about these apps, at least on Android, was that they didn't seem to know how to rudely run in the background even though you've closed them.

To understand why that's a flaw, I should mention that these apps include reminders to use them.  Daily Feats is supposed to remind you to jot down what feats you've accomplished so far that day, or a reminder from My Mantra to review your mantra, add pictures to it, or even set a new one.  Day To Day, in particular, sends you multiple notifications throughout the day to help teach you self-management skills, feeding you a bit of info every few hours across your day.

However, these notifications did not trigger on my device if the apps were closed.  Which means you need to keep each one open instead of closing them when you're done with them for the day.  While I'm sure there are a lot of people that just navigate away from the apps without closing them when they're done, I don't think it's wise to expect your whole userbase to act that way.  In addition, most Android apps that use reminders are programmed to run rudely in the background like I've described, so the fact that these don't do that is surprising.

I left the apps open for the last two days of my test, and surprisingly, that did not seem to fix the issue, so perhaps the problem is also linked to the Intellicare Hub app not working. 

Also, some of the apps seemed incomplete or not fully thought out, like My Mantra.  The idea was to set a mantra or two, which you would try to keep repeating to yourself of the course of the day.  You could take pictures and store them under each mantra.  But the app didn't really do anything except act as an image repository for categories (your mantras).  If you don't regularly take photos of things, this app doesn't seem all that useful.

This may also somewhat be a function of the fact that I'm not a very visual person.  So having to describe, "I am a worthwhile person" in pictures taken around my house, I struggled.  Taking a picture of a clean, empty dishwasher (representing that I do my chores and that is worthwhile) doesn't convey that extra meaning to me when I immediately look at it.  Taking a picture of an achievement in a video game seems shallow to me, even though I might be somewhat proud of it.  And taking a picture of my plants, which still aren't dead for some reason, just reminds me of how much further they have to go before they'll produce anything.  Seeing them in person is one thing, but a picture is quite another, at least to me.

I did spot typos in the course of the week, such as the one in Day To Day when setting your day schedule.  Mistakes are italicized.  It asks, "When dose your day typically start?"  And an awkward phrasing in the Hub app during the assessment, which asked "... how often have you felt trouble falling asleep/staying asleep or sleeping too much?"  Obviously neither of these example typographical and grammatical errors would cause much confusion, so these aren't really major issues.  They simply caught my attention, as such things often do.

The apps also seemed to lose track of what day it was on occasion, which resulted in a disappointing broken streak in Daily Feats, as well as only being at Day 5 in Day To Day when I've been trying the app for 8 days.  This phenomenon might be related to the issue I described above, with the apps not running in the background, but I honestly don't know.

The information in the apps, at least, seemed valuable.  I don't do a whole lot with challenging my negative thoughts recently, though I did a good bit in the past.  I mostly don't have tons of them any more, and it's become less of an issue, but the promptings of Day To Day and the Hub app (when it worked) seemed about right. 

The Intellicare Hub app contains a set of informational resources about depression, anxiety, self-care, social support, thoughts and feelings, activities and emotions, and social media.  I read through the sections on anxiety, depression, self-care, and social media.  The information within was basic, but accurate, approachable for most reading levels, and positive. 

The Hub app also contained a link to some quick resources, including the National Suicide Prevention Hotline, Crisis Text Line, and Suicide Prevention Lifeline Chat.  I was glad to see these, and particularly the variety of available options.  Some people like using the phone, but I personally despise it, so in an emergency when only phone call options were available, I'd probably just avoid that entirely.  This offers text options, including a simple over-the-Internet chat rather than a text message service. 

In Summary

At least for the apps I tried, this free suite of mental healthcare apps seems like a work in progress, albeit one with good potential.  The information given by the apps seemed valuable, readable, and accurate.  

However, there are definitely some major compatibility and functionality issues to work through, such as the Hub app simply refusing to open after a couple days and losing my test scores, the sub-apps losing which day it was, and the apps not running in the background (and thus the notifications not working).  I tested the apps on an Android tablet, which may have contributed to the technical difficulties I experienced.  Typically people use a phone, and Android itself covers a very broad base of devices.  Thus, coding for it can be difficult.  It's very likely the iOS versions of these apps, which have a much smaller range of applicable devices, are significantly more stable.

Beyond the major issues, there were minor issues like typos or "that's not quite right" grammatical issues, though not many.  The apps themselves could use a bit of polish as well.  I could have used some examples of how to make My Mantra's photo collection idea work for me, because, as mentioned above, I had serious issues with that, and in the end, basically didn't use that app at all after the first day.

I think I'll keep Day To Day and the Intellicare Hub app around for another week or so, and see what I think of using them in the long term.  Maybe week 2's Cultivate Gratitude sections will be helpful to me.  

Based on the performance I had from these apps using an Android tablet, they may or may not be worth your while.  If you have a therapist and support network already, you may not need any of the information within.  If you don't, this might be the perfect way to start learning this information.  Particularly now, with the coronavirus isolating us all, this could be a very useful set of tools and reminders for people who are suffering mental illness for the first time, or for the first time in a while.  

What I learned on #BlackoutTuesday

Yesterday was Blackout Tuesday, when people stop business as usual to boost the typically repressed black voices around us.  I am white, so I took the opportunity to do so on my Twitter account (and donate to Black Lives Matter), but I also spent a few hours that day learning about police violence and why the black community in the US is so upset.

As you read this, please keep in mind that autism is not a white-only phenomenon.  Black and brown autistic people are just as human as I am.  Additionally, the police are typically untrained to handle autistic people of any skin color, so it doesn't take much time on Google to find cases of autistic people needlessly shot by the police because the latter misunderstood the situation.  Reducing police violence against black people will bring measures that also save autistic people.

Please also keep in mind that the police are not a monolithic organization.  Each department will be somewhat different, and each member is a human being.  There are some very evil, hideous humans counted among the police (some of whom are in positions of power), but the majority didn't join the police for petty, power-seeking reasons.  However, the systems they live and work in have skewed their actions, and even their perspectives.

In the spirit of understanding and building a safer world for us all, I present to you what I found:

1. The police pay a massively disproportionate amount of attention to black people, and this results in more incarcerations and more deaths.  You can find proof of this in both scientific research and simply in the statistics of the dead.  Racism does, in fact, exist in the system.
2. The police, especially in cities, are unionized, and their contracts renew every 4-6 years.  These contracts can include things like erasing officers' past misconduct from their files, limiting civilian oversight, and disqualifying misconduct complaints that are submitted too many days after an incident occurs.  Here's a good website about this subject, and a study that shows "bad apple" cops tend to stay "bad apple" cops.  Ever wonder why "bad apple" cops get to stay cops?  This is part of why.
3. Police policies often do not require officers to de-escalate situations, intervene if other officers are using excessive force, give a report each time they use force, or even give a verbal warning before opening fire. Here's a particularly good website about this subject.  If you thought, like I did, that all of these things would be in every police department's policies... well, I'm very sorry to say they're not.  Which is a pity, because these restrictions save lives.  The police are not required to exercise even basic protections against excessive force.
4. Police forces are being handed military weapons, and the results, predictably, are more dead people and less safe areas.  Here's a publicly available study on the subject.  The police do not need military-grade weapons to do their jobs.
5. When dealing with mental illnesses and developmental disabilities, the police are almost inevitably out of their depth.  They don't receive the kind of training needed to resolve those situations.  There is another option,  though, and it's to have a separate agency to handle those crises.  Deaths by police could be reduced by a quarter or more. Here's an article about just such an agency in Oregon.  The police are neither prepared nor necessarily needed for crises involving mental health or autism. 

Please remember that evil triumphs only when good people stand by.  The job of the police is to help keep the peace.  That does not include terrorizing racial minorities, shielding their "bad apple" members from consequences, and avoiding reasonable restrictions on their use of force.  

To learn more, and stop standing by (and thus silently saying, "this system is just fine, black (and autistic) lives don't matter"), consider:

• Donating to Black Lives Matter and Campaign Zero
• Supporting black-owned businesses, including banks.  I sadly only know of one black-owned business in my area, but the cookies they sell are quite good (and secretly somewhat nutritious!)
• Advocating for better laws, fair police contracts, community oversight and representation, and limitations on the use of force.  Campaign Zero is a great place to start with this.  

Reading the Research: A Lack of Followup Genetics Testing

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 discusses the minimal followup to receiving an autism diagnosis.  Did you know genetics testing for conditions Fragile X is recommended?  I didn't.  I certainly wasn't told to have any done after receiving my diagnosis.  I've had only minimal testing done, much later in life, and only on the suggestion of my LENS doctor/nutritionist.

The recommendations are relevant, though.  There are various genetic conditions that can go hand-in-hand with autism, and knowing which conditions you have can mean the difference between scraping by and thriving.  For example, I have a condition that means I don't process and get rid of toxins in my body as well.  I got a MTHFR (methylenetetrahydrofolate reductase) test to find this out, but it cost me a pretty penny to do so, plus my insurance wouldn't pay for it.  

I also likely don't absorb zinc from my food terribly well, because I got tested for that and it was catastrophically low.  So was my vitamin D level, which... you mainly get that from being in sunlight, and I work and play indoors.  That's somewhat less true now, as I've taken to going for walks with my spouse and the weather's finally nice enough to go biking.  It's fortunate that going outside is a basically COVID-safe activity.  Pathogens can't build up and become concentrated in the open air, which is fortunate since getting enough vitamin D is critical for my mood and wellbeing.  

Genetics testing can clue you into awareness of things like seizures, hyperthyroidism, sickle-cell anemia, and other complicating factors.  Having this sort of information in advance means not having to worry and wonder for years, until the symptoms force you to go to the doctor and demand answers, then spend months waiting and worrying for test results and specialists.  

The tests can be expensive, which is another limiting factor for statistics like this.  Medicaid may or may not cover the costs, and you may need a doctor to specifically recommend getting them.  I hope, someday soon, that these tests will be both immediately recommended and covered by insurance or at least sufficiently inexpensive that anyone who needs them can get them done.  In the meantime, knowing their existence and benefits is better than not knowing.

(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.)