Mugged by Sound – from NPR

A Facebook friend shared an NPR story (and the video I’m commenting on) about a fictional autistic boy dealing with the noise of his city.

I’ve linked the video here as well:

I’m sure there are a lot of autistic people who can’t relate to that video, but I definitely can relate to some of it.  That said, I do think my own audio processing difficulties are a but nuanced and that an overly simplified view of this can confuse people who expect it to be a simple matter of noise.

It’s not about noise, or volume.  It’s about energy levels.  It’s about what I’m doing at the time.  It’s about whether or not there is “information content” in the noise.  It’s about whether or not I’ve had a break or have a sanctuary from the noise.

I don’t mind noise.  I do some noisy things, like riding a motorcycle.  I don’t mind power tools or a load air conditioner – at least most of the time.  But I do need a place that is safe to retreat to, which means less noise.  Even routine noises – like those depicted in the video – can drain people (and, from research and observations of others, I don’t think autistic people are unique here, even if the magnitude of our drain is different).  I can deal with noisy crowds in cities or airports with earplugs – that extends my energy significantly.

I can also deal with short-duration noises.  Someone running water for 20 seconds is fine.  Someone running water for 10 minutes can, if I’m not ready for it, or if I’m trying to do anything (such as read, watch TV, etc), is overwhelming.  The same with noises like that of a spool scraping against a bowl – a few scrapes are no big deal.  But if there is 10 minutes of scraping and I’m crawling up walls.

Layers of noise are a problem, particularly when there is information content in the layers.  By “information content,” I mean that there is some sort of meaning – it’s not just noise.  Music and talking have information content.  The sound of traffic generally doesn’t.  So, a restaurant with loud music and tons of people talking to each other is horrible.  But another restaurant with the sound of loud traffic – even if it’s the same volume – is not.  There’s something about the information trying to grab my attention, so when there is multiple sources of information – even sources I’m not particularly interested in, my attention is yanked every which way which is simply exhausting.

I need breaks occasionally.  When I’m listening to, for instance, a lecture, I can handle this if there’s some back-and-forth, some delay, something to give pause between points.  I probably am very similar to someone with ADD in this regard – short, clear points are fine, but a long complicated point without a map can be a problem.  A large part of this is my very poor working memory – I simply can’t hold much in that working memory  so hearing 200 details together to synthesize the whole in a lecture isn’t nearly as effective for me as hearing about the whole first, then hearing each of the 200 details individually.  You want me to do well in your lecture class?  Give me an outline before the lecture!  I suspect that’s one reason I don’t have the ability to keep up with social dynamics in groups – it’s all about the details and you’re left to your own to somehow juggle thousands of individual details to synthesize a whole.

Certain sounds when I make them are fine, but not when others make them.  When I make them, I can stop anytime.  I’m not trapped by the sound.  I can escape.  But that same sound made by someone else, doing nothing differently than I did, can be extremely overloading.  The keys are duration of the sound, my energy level, what I’m doing at the time, other sounds simultaneously occurring, and my ability to escape the situation.  Volume level has relatively little to do with it, although certainly the louder the sounds are, the worse this is.

Some examples – I already mentioned motorcycle riding.  Hearing the wind noise at 80 MPH is no big deal, even combined with traffic and maybe some music.  I encounter few things in life that are this loud.  But I can handle it fine, even enjoy it.  The only information content is the music (note I’m not saying the traffic noise doesn’t cue me into what is going on around me, but it doesn’t have the same type of information content).

I can operate power tools all day, even loud ones.  That doesn’t bother me in the least.

Every year at Autreat – an environment where people have a greater understanding of sensory issues, however, I face challenges.  This proves the point that one autistic’s differences don’t necessarily match those of another autistic.  Inevitably, there’s a crowd gathered near the sign-in table.  Typically there are several groups of people, all very (understandably) excited to see each other, so there’s typically a lot of volume in the side-conversations – sometimes even nearly (or actually!) screaming.  It takes every bit of my strength and self-control to walk through the room to the table, say my name, and get my registration items.  The reason is that there is information content in those conversations.  Even though I very likely can’t hear the conversations well enough to understand the words, my mind tries – whether I want it to or not.  This is pretty much the sound that is the absolute worst for me, and every year I experience at Autreat one of the worst assaults on my senses!  Of course there are other things going on too – typically there’s a bit of chaos rather than order (the registration might be late, or something may be missing, or someone at the table might not know how to do something).  I might also want to say hi to people and greet them, so I’m trying to do something different than what I’d normally do in such a situation, and I stick around.  And, importantly, I’m typically rather worn out after traveling, so I’m “out of spoons”.  Together, this makes it a huge, overloading, draining, exhausting, and painful time (I would definitely prefer a root canal as far as pain level!).  But clearly not every autistic feels that way, since typically it’s other autistics making the noise!  We are all different, after all!

In the Autreat case, another factor is not being able to escape.  There are two parts to this – firstly, I can’t escape because I need to register to attend Autreat, something I very much want to do.  So I want to get it over with – it’s not going to be easier in an hour, so I want to get through the stress as soon as possible.  Second, escape isn’t just hindered by external requirements or environment.  It’s also hindered by internal desires and feelings.  In some situations, escape may draw unwanted attention to me – probably not at Autreat though.  At Autreat, the motivation is still internal: I want to interact with people, I want to see people, I want to meet people.  And if I escape to my room, that’s impossible.  Sometimes I get lucky and someone there who knows me already recognizes what is going on, and we leave the room together somewhere at their suggestion – then I get the human contact I’m seeking and get to escape!  But of course asking for this is something that also hits internal barriers, which is why it needs to be at the other person’s suggestion – simply asking “can we go talk somewhere quietly” is expressing the very thing that makes me vulnerable.  When you grow up abused, you learn not to speak your vulnerabilities.

So it’s not about Autreat being a horrible environment or anything like that.  It’s about the complex interaction between the environment at Autreat and my characteristics, some of which are autistic, some of which are part of being an abuse survivor  some of which are energy and ability level at the time, some of which are internal motivations, some of which are just plain the way I am.

That’s part of what makes this hard for people to understand.  It’s not as simple as “Joel is autistic and dislikes noise.”  It’s “Joel has sound sensitivities which are subtle and unique, and not just like that autistic boy in your kid’s school.”  Because it’s unique, and because it’s seemingly contradictory and manipulative.  For instance, if someone is talking during a church sermon, it can be very overloading, even if they are very quiet.  But the reaction I get, even if it’s not spoken so plainly, if I express this is, “You don’t mind hearing that power tool, but a little bit of whispered conversation in church causes you to go into overload?  You just want to control the situation!”  Yes, control is part of it – control makes things easier to handle, for sure.  Because with control, there’s the removal of the stress of not knowing how to escape.  But this gets mistaken for manipulation:

This gives us one of Joel’s Laws:

 Any difficulty someone has that is not immediately understandable by another person is called “manipulation.”

Sure, autistic people can be manipulative.  Of course!  But just because someone wants something changed doesn’t mean they have a sinister motive.  They really might be suffering in a way that you don’t understand.

How to Create a Bully in an “Accepting” Environment

A lot of autistic people like black and white rules.  We want rules that make it clear what is, and what isn’t, acceptable.  Unfortunately, not all the world works that way.  While clear, concise, easy-to-summarize rules are ideal, they simply don’t fit in every situation.  In fact, they can make things worse for autistic people (and others prone to being victimized by others’ abuse).

One of the favored technique of my childhood abusers (the bullies, I.E. those who assaulted and battered me) was to provoke me to violence or meltdown.  They would simply learn the rules of the classroom and manipulate those in a way that was a bit more socially cleaver than I could.  For instance, they might know that a certain sound was nearly unbearable for me, while the teacher didn’t.  They might also know that this sound wasn’t considered a violation of rules (perhaps it was free time or lunch).  And they might know that my reaction to the sound would render me unable to clearly communicate.

So, the abusers, knowing this information, would provoke the meltdown.  When I screamed, punched at the abusers (note that I was much, much smaller than them and couldn’t have done any physical harm to them even if I wanted to when not overloaded), ran from the room, or otherwise responded in the only ways that I could – note I say ONLY ways, and this is important – I would then find myself in trouble, sometimes serious trouble.  And of course I wouldn’t be able to defend myself eloquently (or likely any way other than screaming incoherently).

So what happened?  I stayed after school.  The abusers may have even been seen as victims of my unpredictable violence.

Yet my “violence” wasn’t unpredictable.  The abusers predicted it, and, in fact, sought it.  They were hardly victims of an unstable, mentally defective kid.  No, they were already showing the signs of sociopathic behavior.

Yet, what, objective, verifiable, non-subjective events occurred?  Two did – and this is why a non-subjective, black-and-white evaluation is not sufficient:

  • The abusers made some sounds, which were allowed by school rules (some noise is of course allowed at some times of the day!)
  • The victim reacted violently, loudly, and incoherently, against school rules

To solve this with central authority (I.E. teachers, principals, etc), the central authority would need two things.  First, they would need to have empathy and a deep social understanding of the situation, including the motives that were at play.  Secondly, they would need the ability to articulate that to others in authority and to the abusers.  They would need to show that they weren’t going to be a tool the bully uses to abuse their victim.

Most teachers fail at that.  So do most organizations that claim to be supportive of disabled people.  It’s hard, and true social understanding a rare gift among both autistics and neurotypicals.

I see this behavior online frequently.  Someone will try to skirt the rules of a forum or group, and provoke others.  When there is a lack of moderator or SIGNIFICANT community opposition to intentional provocation, it’s only a matter of time before someone is provoked and violates a formal, black-and-white rule.  Yet the destructive element in the community was not the formal rule violator.  Rather, the problem was the guy (or gal) that walked-the-line and stayed just shy of crossing it.  That person had malice.

When rules don’t recognize the difference between provocation (malice) and response, the bully has been given a true weapon.

Unfortunately, it’s hard to put malice into a black and white rule.  And often when a leader or community stands up to such bullies, the bully will publicly, loudly, and, often, successfully claim to actually be the victim!  After all, they “didn’t violate even one rule, but are now being excluded.”  Particularly in communities where people have been excluded for inappropriate reasons, people will sympathize with the person claiming to be unfairly excluded.

In autistic circles, there’s a further element.  The destructive bully will know the community norms.  He’ll know we want black-and-white rules, because we have trouble sometimes with following, with good, non-malicious intentions, the fuzzy rules.  So he’ll point out that he violated a fuzzy rule, to gain our sympathy.  It’s easy to see his side and say, “Wow, I could have done that too.  It’s hard to know what the rules are if they are fuzzy, and if they are going to throw people out for that…that’s unfair.”  Ironically, this typically leads to a call for black-and-white rules, which are the exact tool that the bully needs to cause even more havoc in the community!

We need to be cognizant of this in our communities.  It’s okay to exclude someone who intends to destroy a community, even if they are clever and able to walk just inside the line of what is covered by black-and-white rules.  We don’t need people operating under malice.  We don’t need, nor should we tolerate, the bully.  But we need to recognize what bullying looks like.  It’s not the autistic child provoked to meltdown who then strikes out at their antagonizer.  Yet, that’s exactly who the black-and-white rules would say was the bully.

We must not enable bullies by immediately sympathizing with them.  We need to recognize that it’s possible to follow the black-and-white rules, yet be a very destructive and dangerous person.  Yes, dangerous.  And we need to agree we don’t want those people in our midst, or at least we don’t want to give them the weapons to inflict damage.

Yes, people are excluded for bad reasons too.  When an autistic misunderstands a rule and unknowingly violates a fuzzy rule, this is not the time for exclusion.  And we need to fight against that exclusion.  But throwing out all fuzzy rules isn’t something that creates an inclusive environment.  It creates bullies.  Intention can be everything.

Barriers to Relationships, Part 4

This is a forth (and final!) post in a series of four posts on barriers to relationships. Check out Part 1, Part 2, and Part 3. This series has been focusing on difficulties forming and maintaining romantic relationships imposed on autistic people not because of their autism, but rather because of abuse, financial policy, transportation, and other support services.

This article talks about sex and similar topics.  Personally, I don’t see any stigma with using the word masturbate or intercourse or whatever else.  Sex isn’t dirty.  It’s something most of the population does or wants to do (yes, I know there are completely asexual people too, and that’s fine too – that doesn’t make sex dirty though).  I also mix talking about sex and marriage below, but what I say applies to other aspects of romantic relationships.  It just so happens that these are the areas of biggest hangups in the eyes of non-disabled people when discussing romance and people with disabilities. Continue reading

Barriers to Relationships, Part 1

It amazes me how little time and research has been spent by professionals on autistic people’s desire for relationships and the barriers that exist to keep us from relationships.  Oh, there’s “research” on how awful we are for people who are close to us, but not a lot on what makes a good romantic relationship where one or both partners are autistic.  There’s little training or education for autistic people (other than “appropriate vs. inappropriate” touch, and, sadly, even that’s lacking too often) on relationships, sexuality,  avoiding abuse, marriage, child raising, and similar topics.

Yet if you ask autistic people what things would make their lives better, “a partner” or “a spouse” is pretty high on the list, as are things like raising a child.  These are often above things like employment and independent living skills, yet we see the focus primarily on employment and independent living skills: things others want us to do.  By extension, I’m guessing relationships, sex, marriage, and child-rearing are not things others want us to do.

When barriers to relationships are brought up, it’s almost always in the context of how autism makes it difficult or impossible to be in a true partnership with another person.  In other words, the focus is usually on the autistic person’s autism – typically with a whole lot of false assumptions about autism.  But those aren’t the only things that give us trouble in relationships.  I’m going to write about three things that have nothing to do with autism itself, but rather deal with the society we live in, that make it hard for many of us to have successful relationships: sexual abuse, money, transportation, and misconceptions about autism.  Today, I want to talk about sexual abuse.  I’ll talk money, transportation, and misconceptions later. Continue reading

Zero, Eighteen, and Other Horrible Numbers

Quick, what does 18 mean to you?

Maybe it means the age you get to vote (if you live in the US).  If you drive trucks for a living, it’s the classic number of wheels on your rig.  It’s the atomic number of argon, a very noble gas indeed.  It signifies prosperity in some Chinese culture.  Maybe it’s just a number that comes between 17 and 19.

What does zero mean to you?  I’m not sure, but to the Weld County (Colorado) School District, it means zero common sense.

You see, in addition to a list of bad words, they have a list of bad numbers.  I couldn’t make that up.  13, 14, 18, 31, 41 and 81 are all bad numbers.  Gangs have used each of these numbers as “branding” for their gang or their ideas, apparently.  So, using zero common sense, Weld County Schools ban any use of the number.  Even when that number is worn by a third grader in the form of a Payton Manning jersey.

For people who don’t keep up with American Football, Payton Manning is the Colorado Bronco’s new star quarterback.  So it is sort of expected that a school kid from a nearby town might own a few things with his number on it.  Like a jersey.

While I absolutely believe in keeping students safe from violence, I’m not sure anyone with sense would think an 8 or 9 year old wearing a sports jersey of the local star football player is a gang member (and, no, people aren’t getting shot in Greeley for wearing the number 18!).  And never mind you can wear 88 (a pro-Hitler reference) at school!

That’s the problem when people develop “simple” and “clear” policies.  They both fail to achieve the desired goal (banning symbols of violence or symbols that might incite others to become violent) by not being far-reaching enough (such as not including 88 or almost any other number that can be used by someone for hateful purposes), while simultaneously going too far (and applying to people who are conveying a different meaning than gang membership).

Sure, it’s good to have simple and clear policies.  But blind application of rigid principles ends up hurting people.  There are times and places for exceptions to rules (and common sense).

For instance, we don’t want students to make threats to other students.  But what do you do when you report the severe bullying of a disabled, younger student, and the school does nothing?  Well if you let the kids know you’ll do something about it, you’ll get suspended.  For bullying.

Or, a pool might ban life jackets, water wings, and other flotation devices.  Should they ban them from a disabled child swimming with his mother?

The problem with cut-and-dry rules and policies is that they don’t take exceptional circumstances into account.  People aren’t cut-and-dry.  We’re messy, hard to classify, unique, and have all sorts of oddities that nobody but ourselves may realize.  It’s pretty hard…no, it’s impossible to write comprehensive policies that give a nice flowchart of questions and answers.  Because you won’t always ask the right question.  You need to ask questions like,

  • “Was the number 18 being used as a gang symbol by this third grader wearing the local football quarterback’s jersey?”
  • “Was the threat by this older student disproportionate to the situation and actually bullying behavior?”
  • “Are these water wings helping this disabled student take part and enjoy the pool, in a way that would be impossible otherwise?”

Sure, you could add these types of questions to the offensive policies, and that certainly would improve them.  But it wouldn’t approve them enough.  Rigid enforcement of rules doesn’t do anyone any favors – it will ignore real harms while simultaneously causing harms of its’ own.