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.

Volume vs. Pitch – A Test

I’ve seen a lot written about sensory issues.  I wrote about the difficulty I have with pitch differentiation when combined with volume changes.  This is something I wrote about years ago, and I’m reproducing again, since I still haven’t seen much written about this type of sensory interaction.  It’s not pitch or volume I have trouble with.  It’s the combination of pitch and volume.  I suspect this is a pretty significant issue (not necessarily pitch and volume, but the idea of combinations of sensory stimuli that are difficult for autistic people, compared to neurotypicals, to process) but one without much research behind it.

Volume and Pitch Difficulty Test

I have trouble determining if a given note is higher or lower in pitch then another if the volume is also different. To me, pitch and volume are seen as the same thing to my conscious mind, although I can  appreciate music and tell when something is wrong with a musical piece. To explain this to my musical friends, I put together some sounds that describe what can’t hear consciously. If you want to test yourself, follow along with my directions, below.

All tones that I link to are in MP3 format. Your computer will need to be set up to play MP3 files for this to work. Unfortunately, I won’t be able to provide support on how to get MP3 files to play properly, although most computer people should be able to help.

Also note that I suspect most autistics hear these tones fine. In fact, some autistics excellent musical abilities. However, I know I don’t hear these tones the same way neurotypicals do.  (Update: informally, most of the autistics I’ve talked to have no problem with these tones)

Calibration Tones

Click to Listen – Calibration Tones

I hear these tones in the same way I suspect an NT does. This file (you can play it by clicking on the above link) consist of six  different tones. The tones are the low volume versions of the low, medium, and high pitch tones that I use, followed by the high volume
versions of the same tones. If you can’t comfortably hear all six  tones, the below links won’t work. I can easily tell, within the first three tones and the second three tones, which one is the highest and lowest pitch – if I was what is usually considered “tone deaf”, I wouldn’t be able to do this.

Test Tones

These are the test tones. Click each one ONCE and try to guess which tone has the highest pitch (the first, second, or third tone). None of my neurotypical friends have any difficulty telling the highest pitch, although I find it very difficult. The first and fourth sets of tones are the most difficult for me – the first time I heard either set, I couldn’t tell which notes were highest in pitch – they all sounded like the same pitch to me, although the other two didn’t have a high degree of certainty for me.

There are two links in each bullet below – first, the “Test Tones” link is the tones themselves.  The “Answer” link will pop up a new window with information about which tone had the highest pitch.  Remember, you’re listening for pitch, not volume.  So, it might be the quietest, the loudest, or the tone that has a volume in between the quietest and loudest that is the highest pitch.

Can you do it?  Does anyone else have similar auditory issues to me?

Joel, You’re Not Polite!

First, a word on the word “bigot.”  I’m old enough that I know there’s a time to be nice – that’s when people, upon hearing of an injustice, make real, concrete steps to fix it while seeking out the input of those they hurt.  I’ll be nice when that situation seems possible.  But if you demonstrate that you don’t get it, I’m not going to make it easy on you or comfortable for you to act bigoted.  Sure, a bigot would like me to say “we have a small disagreement” rather than “you are a bigot.”  After all, “we have a small disagreement” means he doesn’t have to implement any change.  “You are a bigot” requires action – either more bigotry or a turn from bigotry.

To be honest, if everyone called out bigotry in direct, “harsh” language, there would be a lot less bigotry.  One thing that allows bigotry to continue is when those not directly involved simply stay silent or minimize the act, out of politeness towards the bigot.

If you are going to increase your bigotosity just because someone pointed out your bigotry in a rude way, well that’s pretty much the definition of a bigot.  Feel free to be rude back to someone rude to you – but if you’re doing something bigoted, it’s time for a change, even if it was pointed out in a rude way.  You’re not morally superior if you hold your ground on bigotry because the other person committed a moral transgression in your eyes (rudeness).  No, in that situation, you’re trying to be controlling.  You’re trying to enforce your idea of rudeness.  Well, that’s fine, but please do it with something other than bigotry as your “stick.”

In fact it is politeness, or the perceived idea of politeness, combined with power imbalances and subtle bigotry in bystanders that prevents people from confronting bigotry.  For example, watch people’s reactions much of the time when a non-disabled person refuses to give up a seat on public transportation to someone who apparently needs it more.  Now, I’m not talking about someone who explains that they need the seat – I’m talking about someone who just doesn’t give a care about someone else.  We’ve been taught it’s rude to get involved in other people’s business.  Sure, we’ll probably speak up if the seat-hogger himself gets rude towards someone else, but if he stays silent, we generally do to.  In other words, we’re more concerned about the seat hogger’s feelings than the person who needs the seat.  So who has the power?  Obviously the one that gets us to react in a way that helps them.

Granted, I probably wouldn’t recommend yelling at the seat hogger, “You dumb ass, can’t you see that someone else needs that seat more than you?”  I would probably suggest an attempt at politeness.  But if that request is refused, or people on the bus know that this person does this repeatedly and polite discussion doesn’t work, then it may be time to at least make the person as uncomfortable as he’s made the people who might need his seat.

My tactic is to generally point out a problem to someone and then watch where they go with it.  Generally, I give them a lot of time (sometimes months).  I start with giving them a chance to see the problem for themselves, after pointing out something that should make the problem obvious.  Later, I explain the problem in detail, again still trying to be “polite.” But if no movement happens, I’m done with politeness – since clearly that didn’t work.  I’m going to be direct enough that it’s not comfortable to remain doing the wrong thing.  Other people do things differently, and I’m glad there are many styles of advocacy.  Sometimes my style works.  Sometimes someone else’s works.  That said, I’d be curious if politeness has ever worked when when someone doesn’t correct the issue in a relatively short period of time – I think at a point, it takes shame, negative publicity, rudeness, and refusal to allow the action to continue without being contested.

To me, the ironic thing is when I’m accused of being rude – perhaps a harm that I’ve caused – but the harm I’m complaining about is far worse than simple rudeness.  For instance, I remember being handed a friend’s wallet after she paid for some items in a store.  The clerk thought I was her minder or something, and that I should have her credit cards and cash.  I asked the clerk, “Do you normally hand cash that belongs to one person to another person?”  The clerk responded by saying, “You don’t have to be so rude.”  Maybe he was right – I don’t know.  But it’s interesting that now the problem was my rudeness, not the fact that he just treated his customer as if she was incapable of holding her own wallet, and, by extension, managing her own financial affairs.  I’d say that was rude too.  Probably more rude than a complaint about giving somebody a wallet that belongs to someone else!

Really, this wasn’t about rudeness.  It was about comfort.  The clerk was now uncomfortable, just as my friend was when her wallet was handed to me.  And we’re not supposed to make you uncomfortable, apparently.  Even if you just made someone very uncomfortable, dismissed their ability to manage their own affairs, prevented them from accessing services, or were otherwise doing something bigoted.  Bigotry is not supposed to be confronted “rudely,” at least if the person doing it thinks they are a nice person who has done nothing wrong in their own eyes.  A large amount of this isn’t about rudeness, but rather about being right or wrong.  And being told you’re wrong often feels rude.  Sure, maybe the right words will help you digest things, but at the end of the day, you either are or aren’t willing to change your behavior and recognize your prior behavior as bigoted (whatever word you use for it).

I’d be curious how others handle this.  What do you do when weeks or months of politeness fails?  Do you stay polite?  What are you changing to get change in the other person or organization?

Responses to being Called Out

People respond to being “called out” for prejudice, ableism, sexism, bigotry, etc, in many different ways.  I won’t pretend to know why – I don’t.  But I do know that in my life, I’ve seen many reactions.  The least common, sadly, was recognition of the problem along with correction of the problem.

Note that all of these can apply to organizations as well as individuals – and that organizations are even more likely to do one of the wrong things.  Here’s what I’ve seen when people are “called out” on bigotry:

1. I’ll call these the “appeasers”.  These people do as little as they believe necessary just to get the person who called them out to shut up.  So the person might make a small, token apology and promise to do better next time – without any hard action – hoping that by the time next time comes up, you will be long gone.

2. I’ll call this group the “hurt toes”.  A lot of time, the first response to being told that a person is bigoted is a complaint about the way they were told they were bigoted.  Now there probably already was some sort of harm, or someone was really concerned about a deep harm that the person was about to do – but this isn’t important.  What’s important is that you didn’t tell them they were a bigot in a nice way.  This leads to either ignoring the request completely or digging in deeper, while blaming the person who made the request and their “rudeness” for their new, more bigoted, position.

3. The next group is the “under appreciated”.  This group feels that they have already went out of their way to include others, so any additional requests or comments is too much.  Can’t people be happy with what they already did?  This is particularly common with ADA requests, such as a person asking for a sign language interpreter and getting a response along the lines of “We already have wheelchair entrances that cost $500,000 to build.  We allow service animals at the meeting.  We had to turn off our strobe lights for you people.  We hired a cripple to greet people.  What the fuck else do you want us to do?  Are you people never happy?”  Note that most commonly the things they feel under appreciated for are things that perhaps nobody involved even needed, or which are basic legal requirements.

4. Then there is the “I’m only human”.  In this group, people respond to any comment about bigotry by essentially saying they are powerless to prevent it.  It might be something like a change in language (“I’ve been using that term forever.”) or something that more complex (“we can’t be responsible for only having stairs to access the meeting, it’s not our facility”).  Regardless, it’s likely something that is within the power of the person, either directly (such as using respectful language) or indirectly (such as caring and finding solutions when a facility is inaccessible).

5. The “sliders” are people who fear the future, usually with an absurd, extreme twist.  This is exceedingly common in disability accommodation requests – “I know giving you the option to take that test using a pencil instead of a pen is a small thing, but if we let you get that without making you jump through tons of hoops, then someone might come in and want hundreds of thousands of dollars of building modifications we can’t be sure they need.”  It’s also very common with immigrant and LGBT issues – typically a fear that in twenty years, they won’t be able to speak their own language, marry an opposite-sex partner, or simply be the majority.  Usually the fears are unfounded and illogical.

6. Another group is the “litigaphobic”.  These people fear litigation above all.  Now, you would think that would encourage them to follow the law, but typically not.  Typically they are a subtype of slider who is fearful that if they do the right thing for you, they won’t be able to not do what everyone else wants without fear of a lawsuit.  Or, they’ll develop complex worries, such as, “If we let that developmentally disabled older child participate in this program, we’re opening ourselves up for lawsuits if a younger child gets hurt.”  Typically these complex worries have no basis in reality.  They will ironically violate laws to avoid being sued.

7. The “equalitarians” want everyone to be equal, or so they say (and often believe).  That means the rules should be the same for everyone, even when that is hardly equality.  They love the phrase “Special Rights.”  They will enforce rules that prevent equality, while claiming anything else would be unequal.  For instance, they might tell a mother, “If I let you pump breast milk a couple times a week, then I’m essentially penalizing others who don’t do that, since they have to take their breaks at different times.  So it’s not right to do this.”  This group is also very opposed to disability rights, since they see a disability accommodation not as a way of allowing equal participation from everyone, but rather as something the disabled person gets that others didn’t (even though the others very likely wouldn’t want or need it).

8. The “historians” seek a continuity with their idea of the past (which is not always what the past was).  So, if they or their organization always did something a certain way, that proves that change is unnecessary to them.  After all, if it was necessary, they would have done it from, apparently, day one.

9. The “I have satisfied customers” can’t see how what they did is bigoted or discriminatory.  So it isn’t, and that’s final.  For instance, a store owner might say, “I don’t know what you mean by saying that my store discriminates.  None of the frequent customers to my second floor location say they can’t get up the stairs.  I asked them.”  The people they don’t discriminate are happy, so they don’t see any problems.

10. The “it’s not bigoted to…” people are probably the most intellectually honest of the people listed so far.  They are the only ones so far who don’t try to justify doing the wrong thing for reasons other than just “I don’t want to.”  We see these people in our political discorse – “It’s not bigoted to say that gays are child molesters and that they can’t raise kids well.”  At least you know where you stand with these people – you know they are bigots, and they are in fact happy in their bigotry, without the need to justify their bigotry.  Ironically, they are the easiest to deal with, but they are also the group that groups 1 through 9 above fear being lumped into more than anything else.  When you tell a slider they are a bigot, they immediately hear “You’re telling me I’m like that crazy pastor from Kansas who protests soldiers funerals!”  No, we’re not.  We know your motivation, though still wrong, is different.

11. So that gives us the 11th group – the “how dare you call me a bigots!”  This group believes the greatest wrong that can be done to someone is to say they are a bigot.  And, like the “hurt toes,” they now focus on the offense you’ve caused them rather then the wrong they’ve done.

12. The “justifier.”  This person justifies what they did, based on some attribute of the victim or society.  They typically say that anyone could have done what they did, so it wasn’t really bad after all.  Rather than seeing ignorance of something as a mistake that they can correct, they respond that, essentially, you shouldn’t expect someone to change since there are ignorant people.  You might hear phrases such as “lots of people use that term” or “if a blind person can’t access this business, they shouldn’t be going out without help.”

13. Finally, we have the “repentant.”  The repentant is a group of people who “turned from their wicked ways.”  This typically involves both a real, actual apology (without conditions, justifications, or explanations of why it wasn’t that bad).  Unlike the “appeasers”, the apology is then followed by clear action.  Through the whole process, the involvement of people hurt is sought (as someone to learn from, not someone to convince not to sue them, or to convince that bigotry/discrimination didn’t really take place).  This is a rare breed of person and should be cherished when found.

Did I miss any?

How to Pray for your Enemies

I’ll give a bit of a disclaimer for people not interested in Christian posts: I’m Christian, and this is from a Christian perspective.   I’ve seen a lot of prayer in the last few days that I don’t like.  Now I think God can use that prayer just as much as He uses mine.  He is God, after all.  But I hate to see what is intended as a communion of love between human and God become a way of expressing bitterness and resentment.

When I taught prayer to people, I always told them one key thing when praying for someone they disagree with or who they think is wrong: never pray for someone else something you wouldn’t want prayed for you.  And I think this applies to the spirit of the prayer, not just the literal words.

For example, if I had a professor who I felt treated me unfairly, it would be tempting to pray for God to smite them, or at least for God to “change their wrong attitude towards me.”  That’s not really loving my neighbor, it’s really just loving me.  Instead, I might pray that God gives them more wisdom and compassion – while asking God to check my heart and spirit to help me accept growth in my own wisdom and compassion, areas that aren’t easy for anyone to grow in.  In the end, a lot of prayers for my “enemies” end up becoming prayers for me.

Now I’m not saying that my way of praying is the only right way of praying – I don’t believe that.  I believe the point of prayer is to spend time with God, not convince Him to do things.  And I believe that as I spend time with God, He changes who I am, just with His presence.

So, when I see people publicly “praying for our nation” but really they are praying that God somehow smites and knocks sense into the heads of everyone who disagrees with them, I grieve a little.  I grieve when I see preachy prayers that basically say, “God, you gave us a chance, but the dumb, heathen, Godless voters who are going to Hell didn’t vote for freedom and righteousness.”  That’s not prayer.  That’s bitterness and resentment.

If you want to pray for our leaders, please do!  They can use wisdom and guidance.  I can’t imagine what it is like to be Obama (or, before him, Bush, or any of the others) and be faced with the responsibility of doing the right thing when people are going to die no matter what decision I make.  I’m very glad I’m not in that position.  So, yes, we should pray for them.  But prayer is not the time for the bitterness.  Nor is it a way to mask with religiosity your public denunciation of someone else.  If what you publicly “pray” would sound ugly if you were not praying, it’s ugly, even as a prayer.

What do you do if that bitterness, fear, or resentment is there?  Bring that to God too.  Above all, be honest.  We’re human, we aren’t Christ.  We don’t always think or feel the way we “should” and God knows it.  But just maybe it is a better idea to bring that before God in private, where we are receptive to His correction.  Sure, we might tell God what we want – that’s fine.  But at the end of the day, it’s God’s call, not ours.  And part of that means listening, not just commanding.  And I personally find I come out ahead when I do that part in private, since there is plenty God is working on in Joel.