Too Scared to do What I Want

Today, I something pretty huge happened. You see, I’m traveling in Europe and attending a conference.  At the conference, another attendee offered to take a group of people on a walking tour of this city (they know the city well) the day after the conference – just “come up to me after the session and we can exchange contact information” if you want to go.

I started shaking. I really wanted to go – it sounds like a really fun way of seeing the city, and doing it with someone who actually knows the city is even more exciting. It’ll give me a chance to see things and talk to some of the attendees at the conference who, no doubt, are interested in many of the same things I am interested in. And it’s hard to meet up with people.

But I was shaking.

Would I recognize this person in 10 minutes? Almost certainly, no.

Would I be able to go up to them and tell them I’m interested? Again, no way.

But I really wanted to.

Yet I was terrified.

When you’re an autistic kid, particularly if you don’t fit into the clique of other boys at all, life is pretty horrifying – and that leaves scars. It leaves a scar that makes it hard to go up to people and say, “Yes, I WANT SOMETHING!”  You learn that your interests are wrong, that you aren’t cool enough to hang around with other people, and, if by some miracle they let you come along, that’s only because they plan on doing something awful to you away from the prying eyes of an adult. Maybe they’ll steal your money. Or hit you with something. Or violate your body. Or hide, waiting for you to show up and find nobody there, while they laugh at the dumb boy. Or leave you somewhere. Or tell you that they are doing something illegal – and convince you to join in it, only to find out it’s a setup for which you take the blame because the “good kids” turn you in.  But whatever happens isn’t going to be that something you want.

But I’m nearly 40. These things won’t happen. The people making this offer want people like me to come, or they wouldn’t have offered. I know all of this.

But I’m shaking. I’m terrified.

And I’m not going to recognize this person after the session anyhow.  I can’t just go around to 300 attendees and say “Hey, are you the person that talked about X?” And I certainly can’t ask anyone to point them out to me – then I have to overcome this twice.

It makes you want to cry. Why can’t I have the smallest amount of confidence?

Because I’m terrified. It’s not logical, it’s deep in the heart.

This time, the person making the offer was distinctive enough looking that somehow I was able to find them – they look (to me) just like their partner (same gender, same age, same basic body type, same hair color), so I have a 50/50 shot. And I risked it.

I was shaking.

What kept coming to me was a quote, from a different context, about activism: “Speak your mind–even when your voice shakes.”

I can do that when someone else needs me to. Mess with my family and you’ll find that out – there is nobody I can’t go up to and set straight when they’ve wronged someone I love. Or when someone I love just would be happy if I did.

But asking for something about me–that’s different. That’s hard. And it’s not something I need, I’m not advocating for rights. I am just saying, “Yes, Joel wants something.” But isn’t this, too, advocacy? Aren’t I a person worthy of happiness and joy, and needing someone to speak?

I was terrified.

Somehow, when I found that person.  And I gently tried–and failed to get their attention.  I wasn’t positive of their name, so I didn’t want to use the name, but I couldn’t get their attention either.

I was shaking.

I just about gave up.

Someone else saw me and said to the person I was trying to talk to, “Hey, someone’s trying to get your attention!”

More shaking. More terror.

But I did it. I spoke, with my shaking voice. “Are you the person organizing the walking tour?”

Terror.

Shaking.

“Yes, are you wanting to go?”

Terror.

Shaking.

But I somehow found the voice to say yes.

Tomorrow, when I meet up for the tour, will be another bit of stress and terror. I have to find someone tomorrow, in a building I’ve never been to before (another thing that terrifies me).  I’m terrified.

But I’m also excited. And proud. And happy. Filled with anticipation of doing something I want to doBecause I want to do it. Not for someone else. Not pretending I am not interested, lest I be humiliated by finding out I wasn’t really allowed to do this. No, it’s wonderful!

So, tomorrow, that’s what I’m doing.

And I’m terrified.

And shaking.

But the shaking is just as much excitement as it is terror. And probably the cold temperature in this room.

People Pleasing and Self-Respect

I like people around me to be happy.  And I’m in the middle of a bunch of conflict right now.  And I don’t like it.  As part of trying to explain why I’m reacting certain ways and doing certain things, I’m writing this post.  But I’m writing in a general sense, because I think it might affect others and it consolidates a whole swirl in my head.

Sometimes however, it’s easy to do what people want rather than what I want.  Now, sometimes I do what others want and push aside my wants, and that’s good because I consciously make the choice, “This person is more important to me than my own desire in this area.”  For instance, I might not want to help a friend move, but the friend’s happiness and ability to manage life is more important to me than this particular want.

But it’s not always like that.  Sometimes the want is more important.  In some cases, the want is for time and space to think through things.  In other cases, the want is to not see people hurt by others and, if I have the power to stop it, I should, even if it doesn’t please people.  Of course that’s hard to do and it’s why so many of us (including myself too often) fail at it.  But that doesn’t change that it’s the right thing to do.

There are two reasons I try to please people rather than listening to my inner voice.  First, in my past, there are times when I was unable to defend myself against bullies and abusers.  When the bullies and abusers were unhappy, so was I.  That’s probably a pretty common reaction to abuse – to sort of internalize it and think, “Well, I could have prevented it if I only made sure my abuser was happy.”  Of course that doesn’t work, but it’s a maladaptive pattern that is pretty ingrained in me.  It was an attempt to survive, which is exceptionally rational.  So partially, it’s an survival mechanism that can be triggered.

Second, I may try to please people instead of listening to myself because I am sensitive to other people’s emotions, although not in the same way as a non-autistic might be.  They affect me very deeply and very strongly.  I don’t like being around unhappy people.  It can easily pull me into a spiral, something I’ve learned I need to avoid.  I can’t deal with these emotions when they enter my mind, overwhelming me.  I’ll get swept away.  So to avoid getting to that state, sometimes I’ll just go along with what people want.  I’m okay being happy.  I don’t want anger or sadness or whatever else in my head though.  This isn’t a good way of dealing with things, and I’m learning and growing in other ways.

Now, I debated writing this – someone reading this will know how to manipulate or abuse me right now.  But I’m, despite being wronged in the past by some in my community, still of the opinion that most people are decent people who don’t want to do me wrong (and even that some of the people who wronged me didn’t intend to wrong me, and are good people overall).  Not everyone shares my optimism, but my optimism has kept me alive. So, I’m going to hang onto it. I’m writing this to explain what affects me, knowing it probably affects others.

It’s hard to learn to listen to your voice.  It’s hard to step back and say, “I want person X to like me.  But I need to do what is right.”  It’s so much easier to give in to the coping mechanisms and just do what person X wants me to do. My abusers taught me well. And it’s not like most autistic people have tons of spare friends. I still live with lots of fear, whether that’s going into strange buildings, approaching people, or this. And unlike what may be said by outsiders, this fear has nothing to do with autism. It was taught.  And I learned that lesson well.  As do, I fear, lots of autistic people. Someone who hasn’t felt this fear has no idea.

So, not only do I respond to pressure to act certain ways, but I actively look for, “What can I do to make this person happy?” What I’m not doing is what is good for me.  I’m trying to do what is good for them.

Now, this isn’t the fault of the person who is unhappy or that wants my help.  They don’t know they are doing this most likely.  I’ve got to eventually stop things and say, “Hey, I need a bit to process this, get words around it, and maybe even figure out what my brain is trying to tell me.”  But of course that’s part of the abuse training too – I don’t do that often.  But I’m really proud of myself when I do.

How can people help? I don’t really know. I don’t have good strategies for this. I guess, people who know me and know this about me could realize I have a tendency to do this and give me time to process and think, and not take it as a personal insult if I don’t immediately do what they would like to see me do. What they want may also be what I want. But it might not be, too. And I would ask that you listen to me when I hint that I’m at the end of my rope.  If I even hint at it, it probably means the end of the rope is now five feet above my head and I’m dropping down a 500 foot drop. I don’t ask for help much. But I might occasionally hint at it.  That hint is real, it’s not like someone who might yell and scream over something not quite going their way – and, yes, people do that. But my hinting at a problem gets mistaken for not being a serious need while someone else’s yelling gets taken seriously. That sucks. Loudness or forcefulness is not the same as seriousness.

This is why we aren’t believed in the hospital. We go in and say, “Somethings hurting, but not bad enough for me to want to die.” That gets translated to, “It doesn’t hurt bad.”  Meanwhile someone two doors down is yelling and screaming about a minor injury – so they at least get some treatment. If we were worse off then them, we’d yell louder, too, right? Not quite. (ironically, if I say it does make me want to die, then I’m probably “suicidal” and a threat to myself, and, thus, not actually “really” sick and in need of having a physical problem treated)

It’s also a problem with the way a lot of us grew up, both from informal teaching (like my bullies) and formal teaching (where we’re taught don’t question people, quiet is better than loud, keep your voice level down, don’t make other people’s lives hard).  Autistic people get this type of teaching. A lot. Combine that with the typical responses that autistic people have to problems (tell the autistic how they could make people like them, rather than addressing the bully, for instance) and no wonder we often have problems with this. That’s why I don’t think it’s unique to Joel.

But now, regardless, you know something about me. I’m trying to stand up for myself too, to not be carried around with every wind of desire. My friends will accept that. Even when I disagree over things. They want me to have self-respect.

(and, for reference, no, I’m not directing this at one party or another in the Autreat thing, just in general to how demands for “do something now!” can be very triggering, so please don’t read this that way)

The Risks of a Neurotypical Driver

A road sign reading "Watch Out" with a cartoon car heading directly towards a cartoon bike heading the opposite direction

Watch Out <> By KEVIN, Licensed CC BY-NC-SA 2.0

First, I’ll start by saying this: if a person would be at a high risk of killing or injuring themselves or someone else while driving a car, they should not drive.  But note that I didn’t say “if a person would be a dangerous driver,” as that’s a slightly different statement and would bar just about every teenager from driving.

Second, I’ll state that this post is US-centric.  I know other countries have different rules for getting driver’s credentials.  I don’t know what those rules are, nor do I know if they are better or worse than the USA’s.  So you’re warned.

There’s a lot of autistic people old enough to have driving credentials, but who haven’t obtained them.  I’ve seen a lot of reasons, with the most common being:

  • They feel they would be a danger while driving a car
  • Their parents feel they would be a danger while driving a car
  • They have no desire whatsoever to drive a car

I’d add I think there’s a forth reason: Learned helplessness.  And also a fifth reason: different expectations for autistic people than neurotypicals.

Certainly some people shouldn’t drive.  Including some autistic people.  I agree 100% here.  And if someone tells me they would be a danger while driving, I’ll take their word for it and not try to convince them otherwise.

But I’d like to look at the forth and fifth reasons.  First, let’s look at what I mean by learned helplessness.  I know that’s a triggering phrase and that it has a lot of pop psychology meanings.  I ask readers to put those aside and allow me to explain what I’m meaning by that.

Many of today’s young adults had the fortune – or misfortune – of having an autism diagnosis from an early age, accompanied by IEPs, special education, therapies, specialists, etc.  Through all this special labeling and treatment, it’s easy for one thing to be made clear to an autistic person: you’re different, and the normal way of doing things won’t work for you.  It’s also easy to make it clear that the experts know all about your autism, so you should listen to them.  While I agree early diagnosis and appropriate services are good, I think it’s easy to teach you’re not as capable as others.  It’s easy to teach the person that they don’t have social skills, don’t have the ability to plan things, have motor skill issues, have sensory issues, and can’t concentrate.  And from there it is easy to guess that these same difficulties would manifest in certain ways while driving.  Of course this isn’t 100% true – shouldn’t these same difficulties make something like climbing a tree difficult?  Yet I know tons of autistics that were frequent climbers (to their parents’ horror) at early ages.  I think the difference is nobody told them their autism would make tree climbing hard.  Many individuals are used to being told what will be difficult for them, so why would driving be different?  Why would they disagree, even if it wasn’t true?

That’s how we get to the fifth reason: different expectations for autistic people and than neurotypicals.  What’s the expectation (in the USA) for a 16 year old getting a drivers’ license (or whatever age is legal where you are), other than demonstrated competence (to some degree) behind the wheel?  If the child is neurotypical, the expectation seems to most often be two-fold: “Get good grades” and “be born long enough ago.”  If the neurotypical meets these two criteria, they can begin to gain the skills to demonstrate competence as a driver.

But…are these neurotypicals always good, safe drivers on day one of drivers’ education?  Of course not.  They accidentally run red lights, they drive the wrong speed, they miss cues from other vehicles, they don’t realize that that kid standing by the side of the road might run into the road.  Simply put, they have a hard time putting together the whole picture and all sensory inputs, and figuring out the social rules of driving.  At this point, people think, “Oh, autistic people have trouble with big picture thinking, sensory inputs, and figuring out social stuff.  So they’ll do even worse.”

There’s a few problems with this logic, however.  The first problem is that research doesn’t seem to bear this out!  This article cites some research that shows 12% of teenage autistic drivers with autism have received a ticket, compared to 31% of teens in general.  It also shows autistic drivers are less likely to have wrecked – 12% of autistic drivers vs. 21% of teen drivers.  It’s not a stretch to say that the autistic teens may be twice as safe as non-autistics.  That said, I haven’t read the study itself (no academic affiliation right now), and it does sound like the study had a small sample size and may have some selection bias.  But, regardless, I couldn’t find one link from Google about an autistic driver to causing a fatal accident (I did find some very young autistics who aren’t old enough to be a license but who did cause property accidents).  I did note I found many about autistic people (typically pedestrians) being victims in accidents, however.  In fact, in addition to those with a high “functioning level” (roughly meaning being in a typical school classroom and planning on going to college), two other things stand out as being associated with whether or not an autistic person has a license as a teenager: the experience of their parents in teaching teenagers to drive (the more experience, the more likely the autistic is to drive) and the presence of driving skills in a student’s IEP.  Imagine that: if you teach a person to drive, they are more likely to become a licensed driver!

Heck, Fehr in Das automanische Heimweh: Thesen zum Autozeitalter, stated that cars essentially turn drivers into autistic people, relating to how they isolate themselves from others while driving.  So it’s okay for neurotypicals to drive, even if they  become autistic while driving (according to Fehr!), but not okay for an autistic to do something associated with neurotypicals.  Interesting indeed.

Regardless of Fehr’s statements (which I don’t agree with), I do believe that autistics are held to a different standard.  When mom or dad puts their neurotypical teen into the driver’s seat for training, they don’t expect the teen to be a good driver.  But they do expect him to be able to learn.  So when he blows through a stop sign, slams down hard on the brake, and nearly runs over the curb, it’s attributed to lack of training.  When an autistic kid does the same thing, it’s proof of lack of aptitude.  Thus, the expectation for the autistic kid – too often – is “Show that you are a ‘safe’ driver and we’ll teach you to drive.”  How can that happen without training?

Of course there are variations in abilities.  Some autistic people really will not ever be able to competently drive a car.  Of course some neurotypicals fit in this category too.  And some autistics could earn a living from driving, whether it’s a taxi, 18-wheeler, or race car.  Everyone should be evaluated individually, but the standard shouldn’t be “can they drive ‘safely’.”  It should be: With training, could this person become a competent driver?  That’s a different question entirely.

It’s different due to the definition of “safe driver.”  What’s a safe driver?  It turns out that many accidents have little to do with skill of operating vehicle controls.  What causes fatal accidents?  The NHTSA has a bunch to say, using their 2009 statistics:

  • 38% nationally involved at least one driver with a BAC > .01%.  Clearly drinking and driving is bad (32% of accidents involved at least one driver with a BAC > .08%).
  • 31% of fatal accidents involved speeding
  • 54% of fatalities were not wearing seatbelts (note that > 50% of people wear seatbelts, so non-seatbelt use is significant in fatal accidents)
  • 16% of fatal accidents involved distractions (such as cell phones or food)
  • Early morning driving is particularly deadly (2:00 AM – 2:59 AM has 3x the number of fatal accidents as 7:00 AM – 7:59 AM; note this is absolute number, not percentage compared to number of miles driven or cars on the road at those times)

Of course operator skill and ability reduces accidents as well as not driving drunk, not speeding, and avoiding distractions.  That’s why everyone driving should get good driver’s education.  But autistics may be at an edge, particularly if we follow the law.  Everything in the above list, except early morning driving, is illegal.

I’ll also throw out my experience.  I’ve been a licensed motorcyclist for the last 5 years, and got my automotive license at age 16.  I’ve driven cars, driven trucks, riden motorcycles, riden ATVs, ridden scooters, driven RVs, pulled trailers, flown planes, piloted boats since a young age.  I’ve also done some flight education (dropped that due to money, not ability as I had no problem managing tasks such as maintaining altitude, speed, fuel mixture, engine RPM, and compas direction).  My wife (also autistic) was licensed at 16 for cars and is motorcycle license.  She’s driven just about everything with two or more wheels on it since she was a young teen, including scooters, motorcycles, early automobiles, tractors, and plenty of others.  We both have driven sticks, including vehicles that required double clutching or other complex actions (such as manually advancing the timing).  Neither one of us has had a serious accident, and we’ve only got a handful of tickets (speeding!) between us.

I took to driving very quickly, as did my wife.  I’m pretty sure either of us could drive almost any vehicle out there.  Some things took me a bit to learn (loading a boat onto a trailer in 40 MPH cross-winds is difficult.  For anyone).  But I learned.  I was given the chance to learn.  (edit: I’ll also add that both of us believe driving is much easier than things like walking, as far as motor skill requirements; the car does what I want, my legs don’t always)

If you can’t drive, that’s fine, please don’t.  But I encourage people to not immediately dismiss the idea of an autistic driver.

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.