Perseverative Attraction

There’s a lot of stereotypes about autistic people, and, indeed, people who are not neurotypical in general. One of those stereotypes is that we are dangerous people that need to be kept away from others, particularly when it comes to sex and relationships. I’ve written about some of this before, such as Temple Grandin’s mother saying we’re more likely to be pedophiles (hint: we’re not). Or that autistic mate-selection should work like many assume neurotypical mate-selection works (through flirting at bars, for instance – which isn’t actually how neurotypical mate-selection works either).

One of the things that concerns me is that as we fight bad information, the tendency is to not want to talk about problems we do have.

Now, I’m not a researcher, and I don’t have any great data. I do have a survey I’ve done, which shows some interesting data. Among the most interesting, it showed (all results rounded to the nearest 5% to not imply precision that doesn’t exist in my survey):

Most people, autistic or not, have been pursued by someone that the person being pursued didn’t want a relationship with:

  • 65% of non-autistic people indicated they had unwanted pursuit (I didn’t break it into men/women due to small sample size)
  • 65% of autistic women indicated they had unwanted pursuit
  • 75% of autistic men indicated they had unwanted pursuit
  • 100% of non-binary autistic people indicated they had unwanted pursuit

When I asked if the pursuit continued without stopping, even after the object of affection indicated they weren’t interested:

  • 65% of non-autistic people said they’ve been pursued by someone that didn’t stop (thus, everyone that had unwanted pursuit also had unwanted pursuit that continued after the pursuer was informed the pursuit wasn’t wanted)
  • 45% of autistic women said they’ve been pursued by someone that didn’t stop
  • 60% of autistic men said they’ve been pursued by someone that didn’t stop
  • 85% of non-binary autistic people said they’ve been pursued by someone who didn’t stop

I found some of this interesting, although I’ll caution that drawing too many conclusions beyond order-of-magnitude-level conclusions – there are a lot of methodological issues and sampling bias in my survey. It’s also important to realize that the first category – someone pursuing you that you aren’t interested in – is not a problem in itself. For instance, if someone saw me, didn’t know I was married and monogamous, and thus indicated they are interested in a romantic relationship, I shouldn’t be angry about this if it’s done in a respectful and appropriate way. I wouldn’t want that relationship, thus it’s unwanted, but it’s not inappropriate pursuit at this point (assuming, again, the pursuit was respectful). Or, if someone is gay and an opposite sex person pursued them, that’s not inappropriate if done respectfully until the person doesn’t stop the pursuit when told it’s unwanted (hopefully most of us are respectful when doing this too). Hopefully one day if a same-sex person pursued a straight person, that too could be seen as acceptable, so long as it was respectful and the person pursuing accepted that not everyone is going to be interested in them. Likewise, you can be pursued by someone in a category you are interested in (such as a straight man being pursued by a woman), but still not be interested in that particular person – I’ve seen some people get this wrong and think, “I’m an attractive man, she is straight and interested in men, she should be interested in me.” But it doesn’t work this way – people can and should be free to choose their romantic partners for whatever reason they want – and that’s not wrong. Likewise, it’s not wrong to pursue up until the point where it becomes either disrespectful or the pursuit signals aren’t returned (it shouldn’t take an explicit “QUIT BUGGING ME! NO!” to get you to stop – simply not having reciprocation should be enough).

The first thing that struck my attention was that non-autistics, autistic men, and autistic women have roughly the same experience with unwanted pursuit. I’m not sure why less autistic women have had people not stop when they’ve asked them to stop, but in general, it looks like autistic experience is remarkably similar to non-autsitic experience. But what did stand out was non-binary people seem to deal with this stuff a lot more than the rest of us. I’m not sure what to make of that, but I do find it potentially interesting.

The other part of this is that it’s interesting is that there is a myth that autistic men are not pursued – clearly they are. Now I recognize that not everyone is, nor is the world fair. So some decent guys don’t have anyone express interest in them romantically. But it’s still not appropriate to respond to that “unfairness” with inappropriate behavior, and certainly not with violence or stalking or disregard for people’s boundaries.

All of this was to get to another point – people who do the pursuing. I asked a question about whether the person doing the survey pursued someone they knew wasn’t interested in them. In other words, did they do this behavior which may be inappropriate and unwanted:

  • 65% of non-autistic people said they pursued someone who they knew didn’t want to be pursued (FWIW, most of the non-autistic respondents were women, so this wasn’t a man-only thing).  100% of the non-autistic people indicated they’ve asked someone for a relationship (65% also indicate they’ve been turned down).
  • 15% of autistic women said they did this, while 55% of autistic women indicate they’ve asked someone for a relationship (75% of this 55% indicate they’ve been turned down) – so about 25% of autistic women who have asked someone out have also pursued someone they knew wasn’t interested.
  • 25% of autistic men said they did this, while 50% of autistic men indicate they’ve asked someone for a relationship (80% of this 50% indicate they’ve been turned down) – so about 50% of autistic men who have asked someone out have also pursued someone they knew wasn’t interested.
  • 0% of non-binary autistic people said they did this, but 85% of non-binary autistic people said they’ve asked someone for a relationship (100% of this 85% have indicated they’ve been turned down at some point)

I found the non-autistic number remarkable, and would love to investigate to see if that’s accurate or not. If it is, it seems that any given non-autistic person is more likely than any given autistic person to pursue someone they know isn’t interested. This may be the most remarkable thing I found in this survey. I have theories about this, but I think it would be premature to explain them.

I also point out that plenty of autistic women have asked someone out and been turned down – the majority of women who have asked at least one person out have been turned down at least once. Less women have faced rejection, but of course it’s likely they’ve asked less people out and thus had less chance of being rejected at least once.

All that is to say, basically, that autistic people aren’t all pursuing people with no respect for the other person’s feelings, at least not to a greater degree than non-autistic people, and I don’t want that point to be lost.

But some are. Just as some non-autistic people are.

And I want to talk about that in very brief terms. There’s different types of stalking and pursuit of uninterested people. None of it is particularly pleasant to the object of desire – if you’re not interested in someone, you’re not interested in them, and you wish you didn’t have to keep telling them no, for all sorts of reasons – you want to be respected, but you also probably don’t like rejecting someone (it’s not a fun thing to do to another person, if you have any empathy at all). There’s all sorts of extremes – and due to the way I asked the questions, the extremes could show up all sorts of ways in my survey. They guy that thinks shooting the president will get the girl (that link goes to a really chilling letter) likely would show up the same as the guy that asks a girl out once, waits 5 years, and then asks her one more time. John Hinkley Jr. was violent and willing to do great evil in his pursuit – I suspect Jodie Foster is glad that he was locked up. The guy who asks twice in 5 years (and doesn’t hang around someone’s dorm evesdroping on conversations or similarly creepy stuff) is something different, albeit still IMHO disrespectful at the least (no person should have to turn you down more than once – if you’ve been turned down, whether explicitly or through lack of reciprocation, you need to end hope for a relationship). Both guys are in the wrong, but there are difference between them.

There’s a form of autistic unwanted attraction that is somewhat unique, I believe. Now, I’m moving past anything I have anything even as decent as the soft data I described above – I’m going to talk about personal experience and some theories I have. So take this with a grain of salt.

Just as an autistic person might perseverate on trains, an autistic person can perseverate on a person. Of course we can’t always control our attractions, and it’s very possible to feel an attraction for someone who doesn’t reciprocate. It’s common enough to have thousands of movies, plays, literature, and other art (often which gives this idea that if a man sticks through it, they’ll eventually win the girl – which is dangerous if you actually believe life works this way). Having an attraction isn’t a problem. Not accepting a “no” (even in the form of non-reciprocation) is a problem. You can desire whoever you want, but you must call of both the pursuit of the relationship and the hope that you’ll have it when you hear “no” (or non-reciprocation). Seriously, I don’t care that your cousin-in-law or someone kept pestering someone until they got married. You need to stop. And if you can’t be around the person without wanting to make the relationship something more than it is (such as friendship), you’re being dishonest. It’s not ethical to do that to someone, and it causes real harm.

Not only does it cause harm (which is the reason you shouldn’t do it), but it also puts you at risk. I know a man, likely autistic, who perseverated on a girl who used him mightily. She did a pretty ugly thing back to him (she also may have been autistic, not that it matters, but I want to show that people of any neurology can take advantage of people of any neurology). The man asked and asked her to have a romantic relationship, and she bluntly, repeatedly, told him no. At the same time, she managed to lead him on just enough to where he thought she was getting interested, so he gave gifts, trips, meals, etc, to this woman over the course of more than a year – at thousands of dollars of expense. From where I could see, both people were violating the others’ boundaries, and both people were trying to manipulate the other (she was succeeding a bit more than him, however). I do not believe that she was innocent, but rather I believe she was intentionally manipulating. I’m not in any way saying this is the normal response of a victim of unwanted pursuit. Any sort of obsessive focus on someone, to the point where you stop respecting their “no” can equally be used against you by a clever manipulator.

But again the main reason to listen to a “no” (or non-reciprocation) isn’t to avoid being a victim – it’s to avoid being an ass, a creep, and a stalker. That should be enough reason.

All this said, I think it is important to recognize that this type of perseveration is something that can be somewhat different than other types of stalking behavior. That’s not a justification or acceptance or excuse for creepy behavior – nor is it a lack of recognition that even the guy that persists in trying to turn friendship into something more isn’t hurting the woman. They are hurting the woman. But the response is different. This is not necessarily a guy which will benefit from jail time (although I’m not saying autistic people can’t commit acts that should put them in jail). It could be a guy that needs a strong role model or mentor to make it clear, in no uncertain terms, that persisting on this path will have severe consequences, and is inappropriate, wrong, and harmful to the victim. People do have to learn to deal with perseveration properly, even when it involves a person.

I’ll also note that I’ve seen and heard about autistic women doing the same thing – this is not just an autistic guy thing, although more guys than women may be doing it.

In some cases a person can change. And when a person can change, they should be expected to do so. We should recognize that this is something that may be a somewhat unique problem in the autistic world. It may be that we’re actually less likely to refuse to call off our pursuit than a non-autistic person is, but we need to recognize some autistic traits can cause us to engage in dangerous, destructive behavior that harms a victim. We need to acknowledge that autistic excessive pursuit may look a bit different than non-autistic excessive pursuit.

And one more thing is certain: People need to learn, both autistic and non-autistic, that “no” and non-reciprocation means to STOP PURSUIT! How can we work in our community – autistic people – to present this message in a way that is best likely to be heard and followed?

Inexperience and Irony

I commented on an online discussion today about autistic people.  The conversation basically went like:

  • (person A) [states a premise that isn’t supported by research, but is their belief]
  • (person B) [states a different premise that also isn’t supported by research, but is their belief and uses personal experience to demonstrate it is true]
  • Joel: Actually, I disagree with person A on this, for [this reason] and with person B because it’s also unsupported by research on this.
  • (person C) Joel, that’s just your experience.  Other autistics are different than you.  We also need research on this.

That’s pretty common as a response to comments from an autistic person.  When we say, “Uh, no,” and describe our disagreement, two things are immediately assumed by some people (too often, these people are parents, so that’s the example I’ll use, but of course not all parents do this, nor is everyone that does this a parent):

  1. Joel, you don’t know much about autistic people other than yourself.
  2. Joel, you are nothing like my kid, so what you say doesn’t apply.

Now, I never argue that I am like someone’s kid (for one, I’m an adult, and most kids are well kids; for another, yes, I do know that there are lots of different autistic people).

But on the first point, I’m actually a bit more knowledgable than people seem to think when they dismiss my views on the basis “it is personal experience.”  No, I try to make it clear when it is personal experience and when it’s not.  (Ironically the writings that I’ve written that have the fewest criticisms are writings I wrote based on personal experience alone – probably because of the ease in dismissing any need to take into consideration a different opinion)  Yes, my experience informs me, but I – believe it or not – actually know that there is a wide variation among autistic people.  I have a bunch of autistic friends, all very different.  And I’ve met plenty of autistic children.  But beyond that personal experience, I’ve talked to researchers and experts, read their reports (and criticized some of them when warranted!).  I actually know some things through means other than personal experience.  And when dismissing personal experience, outside of baseless generalization (if someone says something applies to all autistic people, an autistic person is perfectly justified in saying, “It doesn’t apply to ME”), I try to explain why I am saying something, and often even provide citations.  Because I don’t want to be ignored.

Strangely, the people that dismiss my views as personal experience and an experience unlike that of their child generally know very little about my personal experience.  But, beyond that, often the personal experience of raising an autistic child is considered relevant.  Few people question a parent who says something about autism and cites their experience with their kid as an example – that personal experience is acceptable.  That’s valued.

I find that interesting.  And ironic.

I also find the conversation today – one like many I’ve had – interesting in that people say that we need research on this topic while being ignorant of the research that is already done.  Now ignorance of research isn’t a horrible thing – that’s normal.  I certainly don’t know all that is out there, and there is no reason someone else should either.  But most of the time when I talk about the research in such a case – because the research most likely supports what I’ve already said!  Instead, I get, “Well, autistic people are different and we need more research.”  Uh, maybe.  But maybe we should start by figuring out what research is out there, whether it is any good (that would likely involve reading it prior to criticizing it), and being willing to expand our mind a bit.  Too often, “We need to research X” really means, “We need someone to confirm what I’m saying.”  That’s not cool.  Willful ignorance isn’t as benign as simple ignorance.

Now, I’m fine with people disagreeing with me.  I’m not driven by a need to be right (really!).  But I do demand – when it affects people’s freedom and rights – that people saying or doing things to restrict that freedom or rights actually have a valid reason for what they are doing, beyond personal experience or calls for yet more research (particularly when the research actually exists!).  So, disagree with me.  But back it up.  And perhaps we might both learn something beyond who is right.

An Oldie…The Perfect Storm

One of the autism causation theories currently circulating is the theory that mercury causes autism. This theory follows a long line of theories that hold the “promise” of allowing parents to cure their autistic offspring. We’ve been through this before – we’ve seen the refrigerator mother theory. We’ve seen the demonic possession theory. We’ve seen changeling and elves. We’ve seen holding therapy. We’ve seen secretin. We’ve seen mega-doses of vitamins. We’ve seen gold salts. We’ve seen the MMR and the leaky gut theory. All these share, with mercury, a complete absence of valid scientific evidence. I doubt we’ve seen the last of the unscientific theories, either.

This is an old article, written around 2005.  I’ve reposted it because, sadly it’s still relevant in some circles.  But since 2005, there’s been court cases on this, notably in the vaccine court, which according to one of the judges, “This case . . . is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.”  Yet many people are still avoiding vaccinating their children, largely because of the bogus theory that there is a link between mercury and autism. Continue reading

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.

Megadoses of Amino Acids!

There’s a new study, reported in the LA Times (and elsewhere), that a rare form of autism that is accompanied with epilepsy is treatable with drug store supplements.  Or something to that effect.

I admit, I haven’t read the study.  I don’t need to – I know the effect it will have.  We’re going to see protein-diets, with protein-moms arguing online about what kind of protein cured their kids.  Great.

Sure, if this study found something that helps people with their lives, helps with epilepsy, in some cases, that’s a great finding.  I will note that the study is missing one key element: people – it tested mice, which while similar to some people (oh, sorry, I was thinking rats, not mice), aren’t exactly people.  So they have a way to go.  That’s assuming it’s not another bogus study about an autism cure, like the precursor to the last 10 or so fads in autism “treatment”.

Personally I have little tolerance for this type of thing.  Oh, no, not little tolerance for helping people with epilepsy, but rather how this will be clung to by some as their hope, while they give kids who don’t have these genetic sequences a bunch of dietary supplements (or, worse, completely screw with the kid’s diet unnecessarily).  I’m assuming the study found something real – only time will tell there (and a bunch of autistics who know science way better than me will rip it apart in a few days if it’s bogus anyhow).  I also note that the researchers say this isn’t a general cure for autism (and probably say they aren’t even sure it’s a cure for whatever type of autism they are curing).  But it will be treated that way by many – mark my words.

We don’t need quack cures.  We need to have a say in our lives.  We need a place in society – whether we get cured or not.  We should be able to have some control, some ability to live our own dreams.  That’s where I’d like to see the attention.  Not a bunch of people who will be sure that their kids have that genetic sequence and will be cured by a bunch of who-knows-what purchased at the local health food store.