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.

What Makes a Good Communication System…Part 4

Previously, I mentioned the need for a way to say no, the need to be able to report abuse, and the need to be able to be inappropriate.  For this post, which I think will be the final post in this series, I want to talk about the value of babble.

A close-up of a magnifying glass with a blury background that may be a desk

Magnifying Glass by Auntie P (Flickr), Licensed CC BY-NC-SA 2.0

Since I wrote JTalk years ago, I’ve talked to many users and parents about how my text-to-speech software was and is used.  Very few people use it as I thought they would.  Instead, I’ve heard some neat stories about how the software is making people’s lives better in ways I wouldn’t have predicted.  One of the more common usage is to connect meaning, sound, and writing.

It’s a conceptual leap to realize that symbols can have meaning, whether those symbols are letters on a piece of paper or sounds made by someone’s vocal cords.  Once that leap is made, however, people typically want to explore the symbols, their relationships, how to write them, and how to say them.

With the users of JTalk, there were three things I heard multiple people doing:

  • Typing repetitive “gibberish” and having the computer speak it
  • Typing something to communicate, listening to the computer speak it, then repeating the words vocally
  • Typing words to hear and then “practicing” alone, having the computer speak the word and then speaking it vocally

The first of these, typing repetitive “gibberish” and then having the computer speak it, consisted of something like typing long strings of a single letter (“TTTTTTTTTTTTTTTT….”) and then hitting speak.  Or it might consist of a repetitive sound, like “Wowowowowowowowowowowowowowowowo…”  In effect, these might be seen as stims (they are repetitive, and that can be calming or grounding).  But I think more may be at play here, at least some of the time.  Just as a neurotypical starts with vocal language by babbling and making nonsense sounds, some autistic people may do the same when they come to language late.  Further, this type of sound play is linking a symbol to a sound (“what does ‘wo’ sound like?”).  In effect, it’s teaching a person that these sounds can be strung together in ways that produce desired output – something people who speak do every day.

Of course I won’t ignore or dismiss the value of it just from a stim standpoint!  But it is more than that for some people.  Unfortunately, this type of sound play can also be annoying or distracting to others.  Certainly there are times and places where it is inappropriate, but it’s important to ensure that there is a time and place where it is appropriate!  There’s real learning and language development here for some people (and for others, it’s just plain calming to have control and assurance of what comes next).

Other people might type something and then hit speak, listening carefully to what is said.  Then, they can repeat the words using their own voice.  I don’t do this so I don’t know for sure what people’s motivations are, but it seems as if it gives people confidence and a reference point to anchor their own speech.  They can hear the words and know what they sound like (they may already, but this will give extra confidence).  Regardless of the reason people do it, this seems to give people the confidence they need to initiate and respond to others verbally, when they would have remained silent otherwise.  So despite the apparent repetitive nature of this, it’s a good thing!

Yet others practice words in private.  In effect, it’s a way of people learning literacy, albeit backwards from how most neurotypicals learn it.  Most neurotypicals learn audible language first, then written language.  So they may need occasional help to connect the symbols on paper to sounds they already know.  Some autistic people do better in writing, so they may have a much larger written than spoken vocabulary (I’m one of these people).  They may know a many words that they can read and write, but can’t speak.  What better way than to have a non-judgemental and infinitely-patient device pronounce the word, as often as you need it, as repetitively as you need it, to get a handle on the word?

I suppose these things have less to do with the construction of a communication system than the uses that a system has.  But they are vital – it’s important a person with any communication system (including the standard vocal system!) gets a chance to play with sound and symbols, to develop the connections and confidence they need to communicate.  It’s also interesting that these types of activities are sometimes complained about by parents – particularly strings of “nonsense” sounds being emitted from a device.  It seems some people expect someone to take a new means of communicating and instantly speak deep thoughts eloquently to everyone.  Few people do that!  Most of us need to learn to use our communication tools, which involves a lot of just plain tinkering with voice, symbols, sounds, etc.

These activites fascinate me in another way, too.  I wrote JTalk for people who wouldn’t speak in some situations – yet I see people using JTalk (and other devices/software) so that they can speak more!  A common concern parents and others have when a person uses some speech is given alternatives to speech is that allowing someone to type (or gesture, symbol, write, etc) when they can talk will remove incentive for speaking from the person.  Quite the opposite seems to be the case – in many cases it seems having the speech device or system encourages people to speak more!  Trust me, as a part-time speaker, I’ll speak when I can speak and communicate my thoughts clearly.  Why wouldn’t I?  Unless it’s painful or difficult at the time (which means I probably wouldn’t communicate at all without alternatives), or completely inaccessible, speech is just plain easier and quicker.  It’s naturally self-reinforcing.  I don’t need communication alternatives removed to grasp this!  And, for me, having alternatives handy means I’m more willing to stretch myself and speak more – since I do have something to fall back onto for an emergency.  I don’t need to preserve speech energy for emergencies that rarely occur!

All this said, there’s a lot to designing communication systems, and a lot to understanding how they are used.  I’m not an expert on this, although I have a lot of experience personally with my communication needs.  I encourage people to learn more, both from users of speech alternatives, from family of users, and from clinicians.  There’s a lot more to this than just my opinions.

Earplugs, Anyone?

While looking for some motorcycle earplugs, I found www.earplugstore.com.  While I haven’t yet ordered from them (but plan on it!), I was very impressed with their selection of earplugs and similar items.  I know many of us struggle with a loud world and look to earplugs or other hearing protection.  But I know many of us also struggle finding comfortable hearing protection (I recommend the “Hearos” brand – very soft and very quiet, but too quiet for using on a motorcycle, unfortunately).  This place looks like it might be a good place to take a look around.  Interestingly, in the “About Us” section of the site, the site owner mentions she’s a parent of an autistic child.

No,  I don’t get a commission or anything – I have no relationship with the store other than my plans to become a customer. So please comment below if you’ve had good – or bad – experiences with this place.