You Want to Take Away my Window

This is an old essay I put on my former website.  Ancient by some people’s standards – 2001!    A few words first:

Don’t be offended!

This is written “to” an imaginary person who represents those people who can’t accept me for who I am. I’m not targeting it at anyone in particular, nor non-autistics in general.

A window in a bedroom looking out to a grassy path

You Want to Take Away My Window

I am autistic. I’ve always been autistic, and I always will be autistic. Autism is part of who I am, just as my sense of humor and my emotions are part of me. I like who I am, even my autistic part.

You see, autism isn’t an awful condition. I’m not condemned to an “un-natural life.” Yet, I have lived a life with pain, fear, and confusion. Pain because of your cold heart. Fear because of my past, and because of my future in a your world, which can’t tolerate uniqueness. Confusion because of my ways of interpreting your world and because of the deceit, lies, and apathy in it.

But, I don’t just feel pain. I know great joy and peace. I wish I had words for what it is like inside these walls, where the noise of the outside world can’t destroy my peace. You can’t understand the joy I have in my quiet place, alone and far from the voices that would destroy, nor can I understand your world of noise and crowds. You probably can’t understand that I enjoy watching, not participating, in your world, nor can you understand why I laugh in response to an inner joy. But, that’s all-right with me.

I’m an observer, trying to understand your world. You may not know this, since you don’t even think I see you most of the time. But, I do see you. I might not be “looking” at you, but I’m watching you through the window of my house – through the corner of these eyes. I don’t want you to know, though. So, I peer through the blinds as you walk by.

As I watch you, I get confused. I’ve seen you say you hate someone. But, later, when that person approaches you, you tell him that you love him. Did I see something wrong? Did you change your mind? People tell me that I’m defective and broken for not doing the things you do, but I don’t understand how you can say things that you don’t believe deep inside. Have you forgotten where you store your thoughts? What drives you, since you don’t follow your inner beliefs? What gives you your purpose?

As I watch you, I wonder what life must be like for you. How can you tolerate a world without right or wrong, but only shades of gray? How do you know when your actions are wrong, if all actions are at least a little bit wrong and a little bit right? Is it painful for you to live in a world full of subtlety and without boundaries? My walls give me peace and comfort, as I know where my world ends and yours begins. But, you don’t have any walls around you. What keeps you grounded? I’ve been told that my thinking, because of my clear boundaries and rules, is both limited and deficient. Yet, these boundaries and rules are my walls. They hold my soul together. What keeps your soul in one piece?

I don’t see your skin color, beauty, or age. I always thought that everyone deserved to be treated kindly, justly, and lovingly. Yet, when I gaze outside my walls, through my window, I see your world which condemns some to a life of pain because of their race, appearance, or age. You told me as a child that I shouldn’t get near to anyone who was different than me – that I should stay with my people, and they should stay with theirs. Didn’t you realize that I am different from you, too? Can’t you see the inner beauty in someone that’s different on the outside?

Your world tells me that I’m wrong to enjoy my times alone, inside this house, with only my thoughts to speak to me. You tell me that I should surround myself with strange voices, to spare me of the “pain” that comes with thinking and quiet contemplation – that I should listen to some sort of noise to block out these pesky thoughts – perhaps the radio, TV, or maybe other voices – that I should tear down the walls of my house and let these thoughts and my thoughts mix. But, I ask, wouldn’t it destroy my value if I became one with these other voices?

When I gaze out my window, I wonder why you want to take away my joy. You claim that you want me to come out and play with you, to leave the “confines” of my house and enjoy your world. But, you want to destroy my house when I’m not looking. You want to take away my window. You see my quietness as a disease that needs to be cured; my joyful activities a pain to be eliminated; my innocent eyes a blindness to be treated.

Of course, you can’t know why my house is important. But don’t you know that I’d show you what my house is like, if only you would knock on the door?

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.

What Makes a Good Communication System…Part 2

In my previous post, I talked about how “no” is one of the most important things we communicate.

That’s not the only important thing to have on a communication system.  When I see a new communication system, my first question is, “How do they say ‘no?'”  But, right after that, my next question is: “How do they report abuse?”

Certainly, I’m not an expert.  I hope others will comment and fill in the gaps I ignored.

“An Empty Park” by last-light.com, licensed CC BY-NC-SA 2.0

This post will be hard for some to read.  For some of us, we’ve survived abuse.  For others, the abuse may not have stopped.  And my heart breaks for the parents who are working so hard to protect their children, but who just can’t protect them all the time.

While it’s hard to get good numbers, we know, conclusively, that autistic and other disabled people are significantly more likely to face abuse throughout our lives.  There’s some well-researched figures out there that are downright frightening.  One article indicates the following:

  •  “… Roughly 5 million crimes are committed against people with developmental disabilities in the United States each year. She compares this with 8,000 hate crimes, 1 million elder abuse victims and 1 million spousal assault victims 1 each year.”
  • “… Sobsey and Doe (1991) found that 80% of a sample of 162 people with developmental and other substantial disabilities who had been sexually assaulted had been sexually assaulted more than once, while 49.6% had experienced 10 or more sexual assaults.”

These are not isolated statistics.  Study after study confirms that most of us (disabled people in general) have been sexually abused and almost all of us have been abused in sexual, physical, or psychological ways.

From my personal experience, out of my close autistic friends, I know none that I’ve talked about my abuse with who haven’t also talked of their own experiences with abuse.

So this is serious.

Autistic people are way more likely to need to report abuse than most people are (that said, abuse in general is way more common than it should be, shockingly so even).  And the abuse doesn’t stop at age 18, either, but can continue throughout a lifetime.

One motivation of abusers is a desire not to get caught.  Who could be a better victim, in the abusers’ eyes, than someone who can’t report them?

How to help

All communication systems (I’m not just talking technology) need to progress to allowing an individual to report abuse to a third party.  I’ve seen several trends that concern me, and I urge people to find way to counter them.  Certainly each situation is unique and needs to be taken individually, but it’s equally important that the focus remain on finding a way to report abuse.

So, what can be done?

Encourage Multiple Communication Partners

No system should rely only on one or a small, closely knit group of communication partners.  A person needs to be able to communicate with people about abuse that may be outside their family or staff circles, for obvious reasons.  Thus, focus should be on encouraging communication with other people and forming close relationships with many different people.

Good Vocabulary Choice

Vocabulary (whether the user speaks or uses another method) needs to include words for body parts, bullying, and other potentially abuse-related terms.  Age-appropriate words (that is, words others that person’s physical age may use with each other and others, so it includes words that most certainly are ‘inappropriate’ in some contexts) and phrases relating to sex that the person understands need to be part of the vocabulary.  I caution people on assuming that an individual doesn’t know about sex or should be shielded from it – the statistics show that too many of us know all too much about rape.

Emotional Words

Most people helping others with communication focus a lot of time and effort on emotional words.  After all, what parent doesn’t want to hear their child someday express appreciation for their hard work?  And what parent doesn’t want to know how their child is feeling?  But sometimes the emotions get ignored for the sake of nouns or labels in a communication system, particularly for adults.  Sometimes communicating an emotion can lead to further questions that uncover abuse.  For instance, a child that used to be excited about school that is now reporting that they are upset and don’t want to go to school may be doing so because of treatment at that school.  Of course they may just not want to take a test or do some other task that has nothing to do with abuse – but it’s worth investigating changes like that.  Which takes us to…

All Forms of Communication

Many of us have trouble expressing emotion, asking for help, or reporting abuse.  As the Jerry Sandusky abuse cases have revealed, even athletic, strong men have trouble talking about abuse they’ve experienced.  There’s a ton of stigma associated with being a victim.  So even a person who wants others to help may not be able to use words to communicate.  They may use other forms of communication.  To quote an infamous motto, It’s time to listen.  As we know in NT (neurotypical) communication, most communication takes place nonverbally.  Autistics are no different here, although we may use different nonverbal communication techniques.  When someone changes habits, becomes agressive or withdrawn, has other health issues develop, etc, it’s important to examine all possible causes – not just “this person is autistic, so they do weird things.”  It’s true that we can do things just for the heck of it.  But we, like other people, almost always have a reason for things. And one reason can be abuse.

A Note About Recording

One technique that SLPs (Speech Language Pathologists) use when providing an assistive technology communication device is a devices’ record features.  This lets the SLP analyze actual usage of the device to find potential ways to improve vocabulary and general usage of the device.  As such, it can be a powerful too.  But it also can be used to abuse a person. All devices should indicate that recording is on and provide an easy, user-accessible (not just password protected programming menu) means of disabling and re-enabling the recording, preferably without logging such actions.  This allows a person to confidentially report abuse, without informing people that may have a vested interest in preventing the reporting.  It also lets people talk and communicate about private subject matters – something even a child, and certainly an adult, needs to fully participate in society.  I’ll get more into this part later.

I’m sure there are other things that can be done.  I’d love to hear from others about how we can find out about abuse, particularly from people that may have communication disabilities, such as autism.

 

What Makes a Good Communication System…Part 1

Those of you who know me probably won’t be surprised that my first post will include a rude gesture!  But for others, welcome here – I’m really not quite as evil as people seem to guess I am from my blog posts, and I hope you stick around long enough to figure that out!  So…on with the post.

At Autreat 2012, I spoke on designing asssistive technology (or, more specifically, how NOT to design it).  One of the points I brought up is the need for a complete communication system for everyone.  I’m not talking about the need for specific technology, but rather a combination of methods for someone to communicate.

I didn’t get too much into what communication should consist of.  Yet, too often, the what is overlooked while the focus becomes the how.  Focus becomes “how can this person communicate,” rather than “what should this person be able to communicate.”

Communication improves our quality of life.  But what is the “what” of communication?

  • The ability to change things
  • The ability to express emotion
  • The ability to inform others

That’s what it’s about, at least to me.  For me, as a part-time speech user (who is using speech probably 99% of the time right now), I feel I have good command of all three of these things.  That said, my ability to express emotion is best accomplished in writing and through keyboard based augmentative communciation devices.  I can’t say what I feel with my natural voice, but I sure can with a keyboard in front of me.  And I’ve learned that’s okay.

But, even more important than emotions is the ability to change things.  And there are several things that are so important that I don’t think any communication system should exclude them.  Sadly, I’ve seen too many children who are emerging communicators denied the ability to change things – particularly the important things.

I’ll be getting more into this in the next few posts.  But I’m going to start with “No.”

A rude gesture, which can be a powerful, visual way of expressing “No.”  Licensed according to the Creative Commons Attribution-Share Alike 2.0 Generic by vidrio.

The ability to say “NO!”

Everyone needs to have the ability to say “no,” even when it is inappropriate and there are consequences to the “no.”  The word “no” has tremendous power.  Most children learn “no” (or an equivalent) at a very young age.  Yet, “no,” has shades of power to it that go well beyond the power a 3 year old may be able to muster.

It can share an emotion, such as sadness, loss, or anger.  The word “no,” uttered in a forceful way, can show the true depth of emotion a person has about a situation that they don’t like (or which even is harming them).  Picture a meeting of support workers for an adult autistic person.  During that meeting, lots of words are flying about, lots of concepts, and lots of legal and social-work jargon.  Imagine now that the autistic person, already overwhelmed, pulls back a bit and can’t figure out how to insert himself into the conversation.  A loud shout of, “NO!” or “STOP!” can bring the meeting to a crashing halt and allow that autistic person to hopefully now insert themselves back into the decisions involving their own life.  That’s the power of emotion.

It can demonstrate a boundary.  Sadly, many autistic people are abused (most statistics show the vast majority of us are sexually abused as children).  “No” can show incredible power here, too.  After all, “No means no.”  In the US, the phrase “no means no” was coined as a way to express, “No, it’s not okay to rape your girlfriend, she has the right to say no.”  Similarly, even an autistic kid who can express “no” could stop some abuse just by putting up a clear boundary.  This type of communication is vital.  Sadly, not everyone will respect the boundary, but there are some people who will claim ignorance of the existence of a boundary without the boundary being expressed clearly and concisely.

It can also express choice.  One of the easiest things to teach someone about language is the power it gives them to change their environment.  But this only makes sense if the person is allowed a choice in things, and, particularly, allowed to say “NO!”  It might be motivating to a young child to ask, “Do you want to play with the puzzle or the doll?”  But it might be even more motivating for the child to say, “NO!” if it can have an impact on the child being able to avoid some activities they don’t enjoy.  Power is a tremendous motivator – all of us want power in our own lives.  And that legitimate need for control in our own lives can be a powerful motivator for further communication.  But it has to start somewhere.

Now, “NO!” doesn’t need to be spoken, screamed, or even written.  In fact, almost everyone knows a way to say “no” already.  It’s equally important to listen and respect that person’s way of doing so.  Certainly there are appropriate and inappropriate ways of saying no, but and sometimes saying “no” won’t get you out of something you need to do. But the ability to express that is important, as is the willingness for people to listen to it. If a person can grunt to say no, and it’s unambiguous, there’s no need to teach lots of language just to say something they can already communicate.  Focus on the nuances, not the concept of “no” at that point!  And listen when the “no” is communicated, however it’s communicated (as I’ve said, this doesn’t always mean going along with the no – but rather it simply means listening to it and responding appropriately).

So, the first thing I look for in a communication system is simple: Can the person say
“no?”