Monday, July 6, 2020

Reading the Research: Fairer IQ Tests

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 improvement on IQ tests, which may help serve autistic people and other neurodiverse humans better.  

Before I get started on the meat of this development, a quick reminder is necessary.  The most popular IQ test, the Stanford-Binet Intelligence Scales, was invented in 1916 to measure, roughly, how good a child would be at learning typical school subjects in a typical school setting.  Essentially, what this test measures is book smarts.  

While the culture overall has decided this is the only kind of intelligence there is, if you ask most autistic people, we can tell you it's not.  I, for example, score well on IQ tests, but struggle with identifying emotions in strangers.  Autistic people may also struggle with organization, planning, and other things that fall under the heading of Executive Functioning.  While pop culture may not consider these skills "intelligence," you can bet autistic people are called "stupid" when we have a hard time with them.  

As it happens, there are tons of kinds of intelligence, and most of them are not covered in IQ tests.  Interpersonal intelligence is a struggle point for me, but you won't find a score for it in a typical IQ test.  Musical intelligence, like how well you can match tones, stay on key, and keep a rhythm, isn't touched by IQ tests.  Spatial intelligence, which includes physical coordination and benefits athletes especially, certainly isn't tested or covered by IQ tests.  

Long story short: IQ tests are an extremely restrictive measure of one very limited form of intelligence.  

So, what does this slightly truncated version of an IQ test mean?  Well, mostly, it means fairer testing for people with shorter attention spans and/or difficulty sitting still and focusing.  It's hard enough for autistic people to be in strange surroundings with strange noises and strange people.  On top of that, the typical version of this test takes two hours, which is a long time for even neurotypical children.  Reducing the length of time while still keeping the usefulness and validity of the test means that your results are going to be a better reflection of the child's abilities.  

In short, prior versions of this test may have wrongly told us that autistic children were below average when they aren't.  Decisions like "this child belongs in special education 100% of the time" may have been made as a result, when that was not in the child's best interests.  

A better, more accurate test means better results, means better decisions on the child's education.

(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.)

Friday, July 3, 2020

Worth Your Read: Finding a Good SLP (and other support personnel)

http://www.thinkingautismguide.com/2020/05/finding-right-speech-language.html

It can be really hard to quantify what makes for a good therapist.  Most typically, I've stumbled, blindly, through finding my professional supports.  That haphazard discovery process seems all too common in families with autistic people, unfortunately.  Whether it's Medicaid assigning you people or picking blindly off a list of qualified individuals that are covered by your insurance, there's a lot of trial and error involved in finding good support for yourself and/or your kids. 

That's why people often rely so heavily on recommendations- whether that's from parents at parent support groups, or directly from autistic individuals.  If you aren't already, I strongly suggest you get hooked into the local autism community. 

It's not always possible to get those recommendations, or even if you do get them, the recommended people may not be available to serve you, or turn out to be as good as you were hoping. 

That's why I was pleased to see this guide to selecting a Speech-Language Pathologist.  While it is very specifically geared for that type of support service (and includes a guide to why an SLP is such a good investment), many of the recommendations translate effortlessly into helping you select a good therapist, home care professional, peer mentor, and even primary care practitioner. 

I can't stress how important it is to have a supportive care team that listens to your concerns and works with you.  With these criteria in hand, you can choose safe and effective professionals and support staff that will help you or your loved one be a happier, healthier, more successful version of themself, not abuse them in pursuit of some imagined standard of normalcy.  

Monday, June 29, 2020

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.)

Friday, June 26, 2020

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.

Monday, June 22, 2020

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.)

Friday, June 19, 2020

"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.  

Monday, June 15, 2020

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.)