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.

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