Friday, April 05, 2013

Autism Understanding: Day 5

Conversation tried
And tried and tried and tried and
Why do they walk away?

I think social thinking and social skills should be incorporated into the general curriculum of every school, at every level. I think even college students need to be required to take social skills classes and training. If people really gained these skills, really got a chance to think them out and practice them before being tossed out there to flounder, the world would just be a better place, all-around.

Anti-bullying programs are a joke. They don't work. Kids seem to regard them as some sort of irritating adult thing, like South Park's Sexual Harassment Panda. In the abstract, people know you don't beat on other people and make fun of them. On the ground, the lines are apparently not so clear. The idea of treating others the way we want to be treated just completely goes over most people's heads. That other people have feelings to hurt, that it might be a bad idea to insult people even when they are not standing in front of you, that being included means being inclusive- these things are apparently harder to learn than they appear.

Besides that, kids who are already serious bullies don't care about anti-bullying programs. They aren't the ones really being targeted. They need a whole different kind of support- someone needs to take them aside and figure out the root of the problem, and address it. Now. Denying that bullying exists in your school, and that no one knows who the bullies are, suggests you might need that kind of intervention yourself. Turning a blind eye is a type of abuse that absolutely requires intervention.

The over-use of the term "bully" isn't helping, either. Is turning a blind eye "a form of bullying"? Perhaps. But let's call it something with more specific implications: abuse. It may seem a passive thing, but really, anyone who has ever worked with people on any level knows that bullying- the direct pressuring of one person trying to exert power over another- happens, and you have to watch for it. If you teach kids (and I mean really teach them, not just note it and move on) early what the pitfalls are that result in bullying, they can at least watch for the traps. When you teach others not only how to act social, but to actually think about social interaction, to think about the other person as well as being self-aware- that gives people the tools to not only avoid the pitfalls, but know what to do if they fall in to one, before it becomes a serious situation.

All too often, people on the spectrum are criticized for "lacking social skills." If we actually thought about social skills and were socially aware and socially thinking, we might realize that it isn't just "an autism thing." Today, I watched Joey in the park. Joey loves babies and little kids, and he wandered about much of the time, trying to interact with families and small kids, play with the babies and get involved with the little ones. No, he's not good at opening interactions, but that's no excuse to hurt his feelings- especially if you an adult, since he is so clearly a child. I could tell you a lot about each and every adult out there in about five seconds, watching their faces as Joey walked up to them and tried to open conversation. And tried. And tried again.

Some of the adults smiled and joined in. Some of them wrinkled their noses and ignored him. A couple families actually picked up their kids and walked away, only to return when he had moved to another part of the park. A group of college kids actually remarked, sitting right next to me, "Someone ought to take that retarded kid home. He's making everybody uncomfortable." You can imagine their faces when Joey came over to me, and we did some signing and playing together, then I gave him a kiss before he returned to his attempts at play. I didn't look. The few seconds of silence before they wandered away was deafening.

This is what passes as social skills?

Imagine how different middle school would be for everyone if social thinking was part and parcel of the curriculum. If kids on the brink of huge social changes and questioning were given the tools to be both self-aware and to understand how their own actions and feelings might affect others, they might have the tools to navigate the social world they are creating. They might understand the real value of diversity, and find the challenge of inclusion far less daunting. With safe, controlled situations to practice in, kids might find going out and making realities a familiar thing, and do it with real confidence and strength in experience, instead of trying to strike out with no idea how to do it.

It's amazing how much easier it is to do something when you have an instruction manual and can practice a bit before going out and doing it "for reals." We know we need to practice skills to get them right. Why do we think we can just go out and use social skills without practice?

Thursday, April 04, 2013

Autism Understanding: Day 4

If you sit silent
You can almost hear him think
The world swirls through him.

Joey has discovered our back yard. This is a very exciting thing. He has taken to getting up whenever he feels like it, putting on his shoes, and acting out his favorite games and movies outside. Sometimes he even adds to them, pretending to be the characters, acting out what they might do or say or think. Joey is very good at imitating voices. He is an amazing Mr. Waternoose.

What I especially like is the getting up and moving part. Moving really helps Joey's brain make connections and think things out. I am convinced that much of the bolting behavior we see is actually Joey trying to get away to take a walk, to process what is happening around him and to him; to escape the immediate melee and make sense of it. Figuring out that he can get up and do this at home is, I believe, a huge step forward for him.

I also like that he "gets" the rule that he is to stay in the back yard. We are constantly having to put up doors and locks and obstacles, lest his frustration overwhelm him and he bolts. It feels like we are building a prison around him; I'm betting he feels it, too. Joey doesn't have firm enough control of language as a communication tool to be able to express himself to, say, a police officer. During his longest bolt, he made it to the park, talked to some of the folks there, and came home; but that is not the same as someone in a uniform stopping you and asking you where you live and if you are OK. When the anxiety goes up, the ability to speak plummets for him- usually increasing frustration and anxiety in an out-of-control vortex of screaming abyss. Being able to have him go into the back yard and stay there, without having to put up a six-foot solid gate (there is a locked gate, but he could, with a little effort, climb it) to pen him is something I think may be important. To be able to mark and understand boundaries, without having to put up physical barriers to understand them- that is something to learn, a lesson about personal and public space. It is important to know the boundaries of "home."

There are boys in our neighborhood who roam. Awesome Neighbor was roaming by the time he was nine- often to our house, where we understood and accepted him, and didn't mind a little bouncing. There was no doubt that when the call came, he would turn for home. One of our current roamers- all in middle school- is an autistic kid from around the corner. It is a tug at heart and mind to think of Joey in his locked yard, when other boys seem able to roam free, with little concern from their parents that they will, when evening comes, turn their faces toward home. It is a hard line to walk, between trust and safety.

It is a line that I know one day I will have to step over. He will walk down the street, and I will have to trust that when the sun goes down or the text goes through, he will turn his feet towards home. And he might say he's going one place, and actually go another. He may decide to turn his feet another way. It is the risk every parent takes, that first time they let their child out the door and out of their sight. Risk and trust. Risk and faith.

If you have never seen that panic in Joey's eye, that rise of color to his face, that bolting trot, it may be hard to understand how fine the line is, how delicate the knife edge. One day, he will be ready. But not this day.

This day, we are taking the first steps along that line. He gets up, and slips out the back door. And I trust that when he feels done playing, instead of going over that gate, he will come back in that door.

We all have to start somewhere.

Wednesday, April 03, 2013

Autism Understanding: Day 3

I can hear him scream
My heart shatters, my feet run
Please help keep him safe.

Spring break sucks.

I love my sons, and I love having them home. I love having them to cuddle late into the morning. I love listening to them play, and having their wild feet race through the house.

What I don't love is Joey getting completely overwhelmed by the total schedule upheaval, and melting down.

Trying to mitigate the situation, I usually stat our day by printing out a schedule for the day, which Joey is permitted to carry with him. However, there is absolutely no way that schedule can be anything remotely like, "7:15, Get on the bus. 8:05, Arrive at school. 9 am, math class..." See, they have a break, but like so many other working parents, I do not. On top of that, I don't do regular work. I can't just drop them off at a daycare or other structured situation, or even a corner of an office. I work 2-3 jobs every day, with varying schedule from day-to-day; so I can't even set a schedule today and have Joey understand that will be the schedule tomorrow, because it won't be.

This piecework income production does very well in working around therapy appointments and bus schedules, but isn't very conducive to consistency when Joey is home and needs a regular schedule. We can't just stay at home and be quiet and still, as we can on winter break, when most of my jobs are also on hiatus. Running about to Grandma's is even a bit of a strain on his nerves, as the only solid warning he gets to anticipate when he will be going is basically that piece of paper he wakes up to, even when I tell him the day before and go over the schedule as best I can. Often, i don't even know where I will be until the morning. Sudden grocery stops and Walmart runs are simple when the boys are in school; these things are require huge amounts of planning and prep when they are home on break.

I also can't say he didn't need the break from work; to just keep sending him to school right now would also not really work. There have been far too many changes there, and his anxiety levels are through the roof. The sudden-para-switcheroo has also lead to a change his academic schedule, which has him thoroughly unbalanced. Now he's not only overwhelmed at home, school is also a mass of confusion and surprises.

I would love nothing better than to spend a day at home, letting both boys breathe and play in the yard as they felt the urge to jump around. I'd like to give Joey a day when he felt some semblance of control over his own life and his own time. But that just doesn't happen on these little-but-just-too-long breaks, such as Spring Break.

Tuesday, April 02, 2013

Autism Understanding: Day Two

Potato chips are
Duck food. Food for ducks. Duck FOOD.
They will make YOU sick!

Processing is something Joey often does "loud and proud." He repeats phrases and words, over and over again, rolling them over in mind and mouth and ear. He watches how you react to them. He giggles if he thinks they are funny. If you say something mean to him, or in a tone he doesn't like, I will hear it for weeks- exactly as you said it.

This is advanced echolalia.

Often when new caretakers and therapists meet Joey, they ask why he is not diagnosed with Asperger's Syndrome. I believe this question is rooted in a basic ignorance of autism, and of Asperger's Syndrome. As is not just "an autistic who speaks." Not all kids with "classic" autism are non-verbal. Being verbal doesn't immediately relegate you to the title "Pervasive Developmental Disorder- Not Otherwise Specified" (PDD-NOS). These labels aren't about functioning or not functioning. They are often connected to how and why these kids learn about communication and its uses, what ways they try to socialize and communicate, and yes, how successful they are in various ways of coping with the world around them. The blurring between labels is why the new DSM is going to umbrella various terms under "autism spectrum" instead of keeping them as separate diagnoses.

The hallmark of Asperger's Syndrome is the development of language that is recognizable as "in the normal range" by neurotypical benchmarks. Joey does not have this. Yes, he speaks. We have worked very hard to help him learn to communicate in a world dominated by people who are not autistic. He has become pretty decent at using the tool to communicate. But his speech is not "normal." His ways of considering the world around him and processing it are all his own. And often, it is rooted in a connection between words, phrases, and emotions, which he can then piece together into recognizable language when needful. Whereas Temple Grandin talks about "thinking in pictures", I think Joey on many levels "thinks in phrases." When he is presented with a communication opportunity, he spins through words and phrases he's heard before, how they were used, what labels to put into them. He picks the ones he thinks he will be useful, stitches them together, and out they come.

Every time Joey speaks, he takes a risk. Will these be the words I needed to respond? Is this was they were expecting?

It makes answering questions a horrible, awesome, overwhelming task. First, you have to process the question itself. What are these words saying? Do we have similar words we can process and are "on file"? What kind of response is expected? Do we have similar situations we can use to help? Then we have to process out an answer- which may be unique in context and wording. We have only a few familiar words in the question to attach meaning, and to find in our "files" matching expected and appropriate responses. It doesn't matter if he understands what he just read, or saw, or heard. The question is a separate processing task, unrelated, isolated, and with so much going in that it exponentially increases the risk and energy to respond.

Speaking requires a great deal of energy. You can imagine what a test might do to Joey. How can you evaluate someone's understanding of concepts when it is all they can do to process the evaluation tool itself?

Yet Joey knows what is expected. So he keeping playing with the words, the phrases, bouncing them about his mind, his mouth, his ear. He keeps trying, and trying, and trying.

And then we wonder why he's so anxious and frustrated all the time. Silly us.

Monday, April 01, 2013

Autism Understanding: Day One

He pads in to me
Leans his head on my tummy
Whispers, "I love you."

The first thing you should know about my son is he is one of the most unique people I have ever met. If you know me, you know what a huge thing I am saying. Absolutely, positively unique; no one sees the world quite the way he does, and the intensity with which he loves people around him can sometimes be overwhelming. He likes thing in his own way, in his own time.

And once you grasp the absolutely uniqueness of everyone around you, and especially Joey, I think you will find the world is a fascinating, intense place.

Joey has a way of walking right up to people and just starting talking, as if he's known them all his life. It takes people by surprise, unexpected and often disconcerting to strangers. However, it is very rare for them not to smile, if they give him a minute, listen to what he has to say, listen to the love and friendship and acceptance he is offering. I can tell a lot about a person in how they react to Joey; the first three seconds when he walks up and accepts them as people, just as they are. Will they repay the compliment, the kindness, the love, or not? It often turns out to be all I need to know.

As we enter April, I ask you to move beyond just "Autism awareness" and into "Autism understanding." Take a minute and listen to what Joey has to offer you. You might find that there really are people here with the one reason of loving everyone, and giving each and every one of us a chance to be ourselves.