Some Insights from Autcom

I won’t write about all of the insights at Autcom that impacted me, but I will say that one part in particular Melanie Yergeau‘s presentation was creepy. Don’t misunderstand – Melanie gave a great presentation that was really insightful and interesting. She illustrated one of her points about how some uninformed outsiders “hack” autism by playing this video:

Of course any video that starts, “Autism Speaks wanted people to experience how this must truly feel for parents…”  Of course I could comment on the choice of an Asian child that looks unhappy as the example of autism by a group of almost-exclusively white upper middle class people viewing it – there are definite shades of racism and cultural bias. But even ignoring that, again, our parents are what is important. And apparently the problem isn’t that the girl seems unhappy, it’s that she doesn’t make eye contact. To make the parent feel good.

I didn’t actually think anything could lower my opinion of Autism Speaks as an organization. That was insight one: they are capable of new (to me) and surprising things.

You can look forward to me someday creating an autism simulation using a creepy white kid to stare you down no matter how you try to move out his creepy gaze.

Another insight was more personal, from Suzanne Oliver’s presentation. She’s a music therapist in the US who talked about the importance of rhythm in creating, stopping, or transitioning movement – and how some rhythms could enable an autistic person to move easier, while other rhythms might serve to trap a person in a sort of loop, and yet others might make it hard to move. She presented some research, which I wasn’t able to evaluate, so I’m not going to speak about the scientific basis of her theories – as I really don’t know one way or another about them.

What I will speak about is my personal experience, as an adult with autism. During her presentation, it “clicked” why I use my tablet-based AAC device so much less than my older keyboard-based devices. Certainly, being able to type at 100 WPM or faster makes me prefer keyboards, but there is more to that, and I think it’s applicable to other autistic people too. I set my tablet to provide a short vibration when I tap a key, but not to provide auditory feedback which I believed would disturb other people (probably true).

However, after listening to Suzanne’s presentation, I had an “Ah Ha!” moment. I learned to type on a real IBM keyboard – the kind you could hear three classrooms down the hall when the strong, real, “click” was heard.  Like this video:

This was when keyboards were keyboards.

I’ve never been able to type as fast on newer keyboards, but I never really thought much about why. But I think I know – for whatever reason, the clicks provide that feedback to get the next button pressed.

Sure enough, I tried it at Autcom – I turned on key clicks on my tablet, and sure enough I found not only could I type easier, but I could also think of my next word and thought easier. I could communicate better.

Is it placebo effect? Maybe. Is it something where the keypress rhythm is stimulating my mind in a better way? Maybe. I don’t know. All I know is that I was able to say what I was thinking again, using typing, in a way that I can’t as easily with speech. And I thought I had lost that when I converted to a tablet device. That’s pretty exciting. Being able to say what you think again is exciting! And I think Suzanne is onto something real.

It was also great to see some of my online Facebook friends and people whose writings I really admire.

So, overall it was a good time. Sure, there were moments that weren’t so good, but I won’t get into those right now. Right now, I’ll focus on how to build my creepy staring child simulator and how I might be able to actually use AAC again!

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)

Inexperience and Irony

I commented on an online discussion today about autistic people.  The conversation basically went like:

  • (person A) [states a premise that isn’t supported by research, but is their belief]
  • (person B) [states a different premise that also isn’t supported by research, but is their belief and uses personal experience to demonstrate it is true]
  • Joel: Actually, I disagree with person A on this, for [this reason] and with person B because it’s also unsupported by research on this.
  • (person C) Joel, that’s just your experience.  Other autistics are different than you.  We also need research on this.

That’s pretty common as a response to comments from an autistic person.  When we say, “Uh, no,” and describe our disagreement, two things are immediately assumed by some people (too often, these people are parents, so that’s the example I’ll use, but of course not all parents do this, nor is everyone that does this a parent):

  1. Joel, you don’t know much about autistic people other than yourself.
  2. Joel, you are nothing like my kid, so what you say doesn’t apply.

Now, I never argue that I am like someone’s kid (for one, I’m an adult, and most kids are well kids; for another, yes, I do know that there are lots of different autistic people).

But on the first point, I’m actually a bit more knowledgable than people seem to think when they dismiss my views on the basis “it is personal experience.”  No, I try to make it clear when it is personal experience and when it’s not.  (Ironically the writings that I’ve written that have the fewest criticisms are writings I wrote based on personal experience alone – probably because of the ease in dismissing any need to take into consideration a different opinion)  Yes, my experience informs me, but I – believe it or not – actually know that there is a wide variation among autistic people.  I have a bunch of autistic friends, all very different.  And I’ve met plenty of autistic children.  But beyond that personal experience, I’ve talked to researchers and experts, read their reports (and criticized some of them when warranted!).  I actually know some things through means other than personal experience.  And when dismissing personal experience, outside of baseless generalization (if someone says something applies to all autistic people, an autistic person is perfectly justified in saying, “It doesn’t apply to ME”), I try to explain why I am saying something, and often even provide citations.  Because I don’t want to be ignored.

Strangely, the people that dismiss my views as personal experience and an experience unlike that of their child generally know very little about my personal experience.  But, beyond that, often the personal experience of raising an autistic child is considered relevant.  Few people question a parent who says something about autism and cites their experience with their kid as an example – that personal experience is acceptable.  That’s valued.

I find that interesting.  And ironic.

I also find the conversation today – one like many I’ve had – interesting in that people say that we need research on this topic while being ignorant of the research that is already done.  Now ignorance of research isn’t a horrible thing – that’s normal.  I certainly don’t know all that is out there, and there is no reason someone else should either.  But most of the time when I talk about the research in such a case – because the research most likely supports what I’ve already said!  Instead, I get, “Well, autistic people are different and we need more research.”  Uh, maybe.  But maybe we should start by figuring out what research is out there, whether it is any good (that would likely involve reading it prior to criticizing it), and being willing to expand our mind a bit.  Too often, “We need to research X” really means, “We need someone to confirm what I’m saying.”  That’s not cool.  Willful ignorance isn’t as benign as simple ignorance.

Now, I’m fine with people disagreeing with me.  I’m not driven by a need to be right (really!).  But I do demand – when it affects people’s freedom and rights – that people saying or doing things to restrict that freedom or rights actually have a valid reason for what they are doing, beyond personal experience or calls for yet more research (particularly when the research actually exists!).  So, disagree with me.  But back it up.  And perhaps we might both learn something beyond who is right.

I’m not doing that

Apparently I’m confrontational. This is to the people who think this.

I’m too abrasive to do effective advocacy.

Too rude.

Too direct.

Too inflexible.

It’s because I say things like, “Autistic people, not non-autistic family members, should be directing the autistic advocacy movement.”

That means exactly what it says. It doesn’t mean that non-autistic parents shouldn’t speak up (or, indeed, speak for their kids at times) for the good of their kids. Nor does it mean any of 1000 other things that people read into it.

But that’s not how people too often hear it. And I’m the one who is supposed to translate my language into something that nobody can take what I left unsaid and make it say something I didn’t say. Something like “parent’s shouldn’t be involved in autistic advocacy” or “non-autistics are bad people” or whatever else I didn’t say.

Sorry. I’m not doing that.

I’m sick of disclaimers. I already have to put too many in place – see the above three paragraphs!

If I say, “people shouldn’t mention lack of services in the same sentence as discussing the murder of an autistic person by their family,” people think I’m saying that lack of services isn’t a legitimate problem. Well, I’m not. And I’m not going to write four paragraphs every time I say something like this to explain that, no, I didn’t say anything about your stress level or ability to get services your child needs.

Sorry, I’m just not doing that.

Nor am I going to pretend that non-autistics that are trying to appropriate my community’s identity are okay. It’s not. There is a difference between someone experiencing autism in themselves and someone experiencing it in someone else. Sure, someone else might have tremendous love and insight – which is awesome and great. And they might say and speak and do great things that help many people. I too will celebrate it. But it’s not your identity. It might be your kid’s, which means you care what happens. That’s fine.

I know there are decent neurotypicals (and, no, neurotypical is not an insult). I shouldn’t need to say that every single fricking time I write something!

I certainly shouldn’t need to go further and constantly gush over the people who do it right. You don’t become an ally so you can be gushed over. It shouldn’t be necessary. If I compliment or acknowledge goodness, that’s a fine thing. But it shouldn’t be required of an autistic person doing advocacy!

I’m asking for my community’s allies to loose a bit of defensiveness and not read everything written by members of the community they are advocating for as if it might be hateful towards them. I’m not hateful of neurotypicals. Nor are most of us (I’m sure someone can find counter examples of hate from autistics, but that’s not the point – I’m not claiming my community is perfect). Heck, I’m one of the first typically to call out an autistic who implies that all neurotypicals are evil or bad or hateful. But by the same token, I should be able to write about discrimination and problems we experience in a world not designed for us without everyone thinking that I’m implying all neurotypicals are bad or evil.

Our ability to speak about our own community should not be dependent upon being good little autistics. It shouldn’t be dependent upon people not seeing any way to take our words wrongly. It certainly shouldn’t be dependent upon people who claim falsely to be allies feeling good about our words. If you’re only our ally when we’re polite and nice and have the right disclaimers, you’re not a good ally!

For those allies that get this, thank you. We do appreciate it.

Three Things You Don’t Know about Sensory Differences

Okay, maybe you do know these things! But I didn’t until college, and I still don’t see them talked about. So, here’s what I learned – which helped me cope with life. I’ll assume my readers know autism affects senses significantly, even if it’s often ignored in the diagnostic criteria.

1. First, there’s not just five senses! Sure, there’s touch, smell, taste (closely related to smell), sight, and hearing. But there is also things like the position of our body in space, our sense of hunger and thirst, knowing how the parts of our body are positioned (proprioception), sense of time, and others. Even senses that seem related aren’t necessarily – for instance, the feeling of pressure, temperature, and itch are actually distinct senses (heck, even pressure isn’t one sense, but at least two – light touch is processed distinctly different than deep pressure)! Any of these can be affected by autism or other neurological differences. For me, my internal body senses (Am I hot or cold? Am I hungry? Am I sick?) and proprioception are generally weak, but other senses are significantly more sensitive (light touch). Others might have more impact to their sense of time (common with ADHD), taste, etc. It’s important when looking into your own sensory processing (or that of a loved one) that you consider not just the senses you learned about in elementary school, but also all the other senses and their intricacies – and to remember one might be affected yet another might be typical.

2. There’s a difference between sensitivity and registration. For instance, a sound might affect an autistic person differently than a non-autistic person, because it causes the autistic person pain (and doesn’t do that for most non-autistic people). Yet, at the same time, this person who is in pain doesn’t always react to the sound. So an outside observer might conclude, “This person isn’t really in pain, because they would always be in pain when this sound was present if it was real. They are manipulative.” That’s not true! It’s possible for someone to be pain-sensitive to sounds, yet also have low registration. In other words, the sound really isn’t painful until it’s noticed, and the person may even have a harder time actually noticing the sound! This is not manipulation or deceit. Rather, it’s the way some people’s senses work. The converse is also true – someone might be high registration and notice things few others do. But registration and sensitivity are not the same thing – one is the sense reaching a threshold of affecting the person, the other is how much it affects the person.

3. Senses don’t always work in the way an observer would expect. I was thinking about this during the week, when I was riding a motorcycle. Why can I do that without problem, but I can’t help but bang into a table when I walk through my living room? It’s actually not complex, but it’s also not obvious. I have trouble with the sense of proprioception – knowing where my body is in space. Obviously, that’s important when walking around your living room if you don’t want to bang into things! It’s also important on a motorcycle, as you need to have a strong connection to the environment – and the positions of your body parts is pretty important for that! So, why can I do one, but not the other? It’s simple: I get lots of feedback from the motorcycle. It’s vibrating, I feel the wind, there’s bumps in the road, etc. In other words, I get lots of input – and with that input, I know where all the parts of my body are within space. Walking through the living room, I don’t get that input. So I knock over the coffee table! I suspect if we put my living room on giant springs, I’d be fine. But it’s not. So I’ll keep banging into things. But this is the important thing to realize: someone might see someone that walks awkwardly through their house and think, “The last place they need to be is on a motorcycle. They get hurt just walking. I can’t imagine what will happen on a bike.” They would be wrong, though – it turns out the bike may be safer than walking, because I get the input into my body to know where everything is. In a way, a motorcycle is assistive technology!

That’s in fact the key to all three points: how people interpret the world through their senses is not necessarily easy to understand, obvious, or predictable. But that doesn’t mean it’s not real.