Another Likely-Neurotypical Child Wanders from Home – and the 1%

This time of the year, we hear the frightening stories of yet more neurotypical children wandering from home.  For instance:

Okay, maybe we don’t hear about these things often.  We hear about how autistic kids wander away from home, sometimes leading to injury and death.

I’ll start this by saying I have the utmost sympathy for any parent who can’t find their child, regardless of the neurological status of their child.  It must be absolutely frightening.  It has to make even a good parent feel as if they have failed as a parent.  And for parents who have children who are seriously injured or die, my heart grieves too.  I can’t imagine how awful that must be.

But there’s a lot of focus on how autistic kids run away from home, as if this is completely unusual childhood behavior.  Apparently, if your child is neurotypical, this is a non-concern.

This was reinforced by reporting, with the headlines talking about half of autistics bolting off, that referenced a recent study that, among other things, supposedly compared autistics wandering away with non-autistics wandering away.

It’s important to note that the study was a parent survey.  IAN, the organization that created the survey, defines “elopement” as follows: “For the purposes of the Elopement and Wandering Questionnaire analysis, we defined “elopement” as the tendency to try to leave safe spaces or a responsible person’s care at age 4 or older, beyond the toddler years when it is considered normal for a child to bolt from caregivers on a beach or in a store, or to leave the front yard and enter the street.”

We’ll come back to this.

In the study, they state, “Thirteen percent of siblings of children with ASD had ever eloped at or after age 4 and children with ASD were more likely to elope than unaffected siblings at all ages (Fig 1). For example, from age 4 through 7, 46% of affected children eloped compared with 11% of unaffected siblings. Likewise, from age 8 through 11, 27% of affected children eloped compared with 1% of unaffected siblings.”

“Affected” children have an ASD with appropriate scores on an autism spectrum diagnostic instrument (note that this instrument will classify people without a diagnosis as autistic and vise-versa).  The ultimate determination of “affected” was determined by parent self-reporting.  Also note that one incident of eloping during the child’s life put the child into the eloper category.

First, I’m not sure this passes the sniff test.  Really, between 8 and 11, only 1% of “unaffected” children ever decided to “leave safe spaces or a responsible person’s care?”  Since when?  I explored my neighborhood with typically developing peers, and I can’t say everything I did (or they did) was safe.  I can also say I remember sneaking out of my house occasionally – just like my peers.  I have a hard time believing all of my peers were the 1%!

So what gives?  What is going on here?

First, the study relied on participants to evaluate whether the wandering was actually “elopement.”  Obviously, once being in an unsafe place during this age range or once being without supervision was not elopement.  While the survey is not publicly available, the survey seems to be including a subjective evaluation of the wandering behavior – typical childhood play is not considered wandering, but something else is.  Most likely, this something else is behavior that the parents are worried about, which may or may not actually be tied to higher risk to the child engaging in those behaviors!

So, if a 10 year old non-autistic child wandering the neighborhood doesn’t cause the parent concern, it’s probably not considered “elopement” in this study.   Would the same behavior by a 10 year old autistic child be elopement?  I’m guessing that’s up to the parents.

Second, only parents with autistic children were surveyed – no survey was given to parents without autistic children.  So the “unaffected siblings” came from only families with an autistic child.   This is significant, since if parents of only “unaffected” children (isn’t that a yucky way of phrasing things?) were surveyed, it’s probably reasonably likely that the parents are a lot more worried about the safety of their non-autistic child than their autistic child, whether for good reasons (inability to safely interact with the world outside of direct supervision) or bad reasons (perceived, incorrectly, to be unable to safely interact with the world outside of direct supervision).  But regardless, they were typically much more concerned about the behavior of their autistic child when she was outside of supervision.

This study does have some useful findings.  Clearly, parents are worried about autistic children wandering.  And that’s a serious concern that needs serious attention.  But I’m worried when I see a subjective instrument with lack of good experimental control used to say autistic kids wander but neurotypical kids don’t.  I just don’t think that’s right.  Kids explore and wander off.  They get bored and leave those boring places.  They sometimes don’t come home when the parents would like.  This is true of neurotypical and autistic kids!  But that doesn’t necessarily translate into higher safety risks for the autistic kids.

In addition, there may be a significant survey bias present.  A New York Times article referencing the study notes that one of the primary investigators shares this concern.  The article stated, “Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.”

How could this be studied better?  It would be important to study neurotypical kids too.  Do they go outside of the boundaries set by their parents?  How often?  Do autistic kids take risks when wandering that neurotypicals do not?  What kinds of risks?  How can they be mitigated?  Are two boys wandering around the woods lost perceived differently because it’s not a boy by himself?  There are some real questions to answer.

Do autistic kids wander?  Yes, of course.  Do neurotypicals?  Yes, of course.  Do autistics wander more often?  We don’t know.

I Am Not

(This is another oldie from my old site, slightly modified)

I am not…An Autistic’s Response to Prejudice

I am not an object. Don’t talk about me when you are around me unless you are willing to talk to me.

I am not a child. Don’t make decisions for me – let me have influence over my own life.

I am not an extension of your ego. Don’t make me feel guilty for not acting in a way which reflects best upon you.

I am not a project. Don’t think of me as something you are building, God already built me. He doesn’t need your help.

I am not a decoration. Don’t pretend to be my friend, give me a token board membership seat, or take me to your autism event so you have someone to show off to your friends.

I am not a robot. Don’t assume I don’t have feelings.

I am not (insert famous autistic). I don’t think like him/her anymore than you think like John Wayne.

I am not worthless. Don’t throw me away when you grow tired of me, but value me, my insights, and my feelings. My life is as important as yours.

I am not a criminal. Don’t lock me up when I haven’t done anything wrong, but allow me to walk outside of whatever walls you may think I belong behind.

I am not a monster. Don’t stay away from me simply because I do something you don’t do; you do things I don’t, too.

I am not an experiment. Don’t test your theory on me.

I am not defective. You don’t need to repair or fix me.  Allow me to be the person I am.

I am not a puzzle. I don’t need you to “put me together”. You are as puzzling to me as I am to you, yet no one calls you a puzzle.

I am a person.

Have you considered welding?

I was a horrible student in school.  Most of my schooling involved me barely passing the required courses.  I had a tremendous range of grades and a rather strange mix of classes.  For instance, I had to retake freshman English and world history (and some others).  Yet I was in advanced placement math.

My teachers had no idea what to do with a student like me.  Or, rather, most of them didn’t.  So I ended up failing courses that should have been easy – English for instance.  I love reading, and have learned to love writing.  I’m fairly good at both.  Yet, I flunked basic English not because of lack of reading or writing ability, but simple lack of executive functioning combined with a way schools have of taking something that kids have natural talent at and turning it into a boring, dull subject.

That’s the first problem I had with school.  It didn’t help that I was getting the shit beat out of me, I was incredibly lonely, and was suicidal during most of my schooling.  But, ultimately, even if those things weren’t happening, I didn’t do good with school.  My college career, bookmarked by 4.0 GPAs during my first and last semesters  was pretty lackluster.  And college was a very happy and enjoyable time for me, so I can’t blame that on the abuse and depression.

I was plenty capable of doing well in school academically.  As I mentioned, I did great at the beginning and end of my college career – even with difficult classes like engineering physics.  And I did good my last year of high school, but we’ll get to why later.  But, in general I couldn’t do it.

The first reason I didn’t do well was simply executive function.  My ability to maintain a schedule and keep up with homework is variable.  Sometimes it’s relatively easy (at least as easy as it is for anyone).  Sometimes it’s very, very difficult – even impossible.  I just can’t finish, sometimes can’t even start.  That’s the autistic inertia you’ll see autistics, but not professionals, talk about.

Sometimes, through sheer willpower, I could overcome that – at least for a time.  But, inevitably, there’s a crash coming soon afterward.  From my experience, I can keep it up for about a year, if there’s tremendous motivation.  But no more than that.  That’s why I did good my senior year of high school (4.0 there, but not other years, as I graduated “in the top of the bottom quarter of my class”).  But I had some significant motivation.  I had two things that year – a mentor, which I’ll get to in a bit, and my parents’ help.

My parents helped (actually my mom) by making a deal with me.  “I’ll write you a note to get out of school anytime you want, for any reason, if you bring home A’s on your report card.”  For a kid who faced abuse at school, few things can motivate as much as getting away from ones’ abusers.  Now I don’t suggest that we abuse autistic kids so that we can give some motivation in the form of getting away from abusers.  But for me, this was exactly what I needed.  I needed a break.  And it wasn’t just from abuse – it was from the stress of the routine, that I simply couldn’t maintain.  I could do my burst of energy and activity, then take a day or two off from school.  That helped.

My mentor was also a huge help – for two reasons.  She was the computer instructor in the school, at a time when my school was one of the first schools in the world getting hooked up to the internet.  Because hooking schools to the internet, particularly in a rural area, was pretty unusual, nobody had rules about how to do it yet.  So I got to run wires through the school, set up servers, and, in general, just learn how the internet worked.  This teacher saw that this was something I was interested in, had aptitude for, and she could build upon.  So she turned me loose and took a huge risk with me.  She also told me that she would arrange for me to get out of any class I was doing well in if I wanted to work on the internet instead – once again, a great motivator!

What’s amazing about this instructor was that I never had her as an instructor – she saw me in a computer lab, saw that I had some interest in computers, and did what someone who loves teaching does – she taught me.  Not with formal lesson plans, which wouldn’t have worked well with me, but by letting me do something I valued.  It had a great side-effect of turning into my career (I’m employed today “making the internet work”), and has let me earn a good living for myself.  At my company, I’m the least formally educated person in my peer group.  That opportunity was available to me because of the experience  I gained, starting with running ethernet cables in high school.

Yet, while this was happening, I was getting career advice.  They felt all high school students should make plans for their future.  Fair enough, but horrible implementation.  Ever since I was 5, I wanted to program computers.  Once I was 10 or so, I knew I wanted to do computer security.  When I was 25, I was programming computer security systems – I was the only person I knew who was doing exactly what he dreamed of doing as a small child.  How many people end up in their dream job?  I’d consider that success.

So, I remember my career counseling.  I remember filling out worksheets to find out what I was “good” at, or what I had “aptitude” for – and finding out I should be a file clerk or mechanic.  I remember then talking to the actual staff, and telling them what I wanted to do.  The most memorable experience was one where I was told, “Computer programming?  That requires college.  I don’t think that’s the best choice.  Have you considered something like welding?”

Now, I have great respect for someone who can weld well.  I married a highly skilled welder!  I look at what my wife can do with a few pieces of scrap metal and am always amazed.  But I can’t do that.  Part of it is that I’ve never had training in welding – but part of it is that it isn’t what I have aptitude for.  I’d probably be able to become an okay welder, with enough education, practice, and time.  But I’m a good programmer, and much more helpful to society as someone who can practice his craft at that level than merely at the okay level.  Ironically, his comment about college also was wrong.  I finished college last year, about 16 years after I started it.  I never had a college degree when I was hired at a job.

That’s my problem with schools and career counselors.  Most look at the typical path from A to B.  I’m not typical.  I’ll never be typical.  I can’t do school and succeed the way my peers can.  But that doesn’t mean I don’t have things to offer the world, even if I might have to take a bit more twisty of a path to get from A to B.  Fortunately, some people saw my ability, and I had good mentors who helped me not with the technical stuff (although they did that by letting me loose on it!), but being able to engage me in my weaker areas while I was focused on my strengths.  I’ll write about that sometime, but this is long enough.

But in the meantime, I don’t want any career advice.  At least not from the system that thought it would be better to be an okay welder than a good programmer.  (for what it’s worth, I shudder when I think of the loss to society because others who would be great welders who are now just okay programmers – it’s a loss either way around)

Today, I’m feeling.

A sad yellow smiley face, with big blue eyes and a red frownYes, I’m feeling.  That’s all I know for sure.

I’ve always had a hard time figuring out what I’m feeling, particularly negative emotions.  I remember being shown, in kindergarten and first grade, pictures of smiley faces and frowny faces, and being asked, “What does this picture show?”  I always got “sad” and “angry” wrong.

I don’t know when I learned the difference between angry and sad.  I imagine it was a few years later.  I don’t think it occurred to me that “sad” was different than “angry.”  I knew I didn’t like the way either felt.
A yellow angry face, with eyebrows slanted towards where the nose would be, a black frown, and eyes looking downward

Certainly today I can tell you the difference between angry and sad.  But of course I still misread people, still miss cues, still do the wrong things.  The world is a complicated place.

But right now…well, I don’t know what I’m feeling.  I feel, well, weird.  Not happy.  Not sad.  Not angry.  I don’t know what I feel.  Nothing happened today that seems particularly emotionally significant – it was a decent day that I spent at home with my wife (and three good meals!).  We didn’t spend as much time together as I would like (we both had other tasks that needed to get done), but this isn’t a longing feeling, even if I would have loved if we both had nothing to do but spend the day together.  But, as much as I might want that, that isn’t the feeling I’m talking about.

Sometimes I think I was born without a secret decoding ring.  I had to spend a lot of time learning “Oh, that’s what HUNGRY feels like!”  It took me a while to learn to recognize being tired or overloaded.  And I still get these wrong.

Like I am today.  I don’t know what this feeling is, and probably won’t ever figure out what I was feeling tonight.  That’s okay, I know there are plenty of good and bad feelings in the world.  I don’t have to figure everything out perfectly.  But, still, it would be nice if I knew how I felt!

It’s Complicated…No Shiny Boxes

Shiny boxes don’t fit real people. We’re way too complex for that. It’s a point I often make about autistic people: we don’t fit boxes well. It turns out that autistics aren’t the only ones who don’t fit in boxes. In honor of National Coming Out Day last week, I’m posting a video that sums up a lot of academic ideas about sex, gender, attraction, behavior, and gender roles all in a few minutes.

There are tons of LGBT people in the autistic community (I suspect a far larger percentage than in the non-autistic population). Plenty of autistics don’t fit the stereotypical idea of a man or a woman. I’ll give a hint: just like an autistic person may intelligent but not speak, or may have sensory issues but not communication issues, there’s a lot to human sex and gender, and the different pieces are not necessarily related to each other. It’s bad to make assumptions about an autistic’s abilities. And it’s bad to make assumptions related to sex, gender, attraction, and behavior.

Enough of my writing – this person explains it much better: