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autism

Google Glass: Brain Power for autism

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My dad sent me this article, knowing I would have thoughts. The article is called, “Can an app for Google Glass offer a path out of autism?”

I become suspicious, immediately, of anything promising to “cure” or “fix” or “save kids from” autism. So, my defenses were immediately engaged.

I have read a little bit about Google Glass over the last year or so, but am certainly no expert on the technology, nor do I claim to be. But, the idea, at least as I understood it, is this app (called “Brain Power”) would be used to encourage autistic children to make eye contact. The app flashes cartoon characters on the screen where another individual’s face is (e.g., a parent), to “lure” their eyes up to the individual’s eyes. Essentially, tricking them into making eye contact. Once they look up, they receive points, and the character is taken away.

First of all – I am a huge fan of technology. Almost every single one of my students use it for learning in some form, and I believe its implications are limitless. So my issue with Brain Power is not the fact that it’s technology. In fact, I believe that Google Glass in general could absolutely be added to the arsenal of tools that benefit our autistic kids.

Several things bother me. For starters, I have said many times, and it is no secret that I believe, that autism is not a “condition”, is not a “problem”, is not an “epidemic.” And I have a lot of reservations for a company who operates with this fundamental belief, as Brain Power seems to. Autism comes with its challenges, but so does neurotypicalism.

The next issue is what Brain Power is aiming to do. Is it REALLY aiming to improve social communication, and social thinking skills? Or is yet another behavioral approach, aimed at reducing certain behaviors? Because I am thinking the latter. I believe in Social Thinking, in teaching social communication, at breaking down the fundamentals to help our kids understand social interaction. I teach it every day of the year, and I’m all for it. But teaching kids how to interact, why to interact, is not the same as a strict behavioral approach. We are not requiring our kids to do something without helping them understand why.

Another app digitally accentuates the person’s eyes to attract attention, because autistic children are known to focus on the speaker’s mouth.

Well, I can’t tell you how many autistic kids and adults have expressed that they can’t make eye contact, because it’s too damn painful. We actually teach kids to look at a mouth, or a nose, or an ear – we teach them to fake it, that no, we aren’t going to force them into making direct eye contact, but by looking in the general direction of someone’s face, they are still showing that they’re listening, paying attention, showing interest. Yes, there are kids who truly don’t understand the concept of why they would need to look at someone’s face to begin with. So we start there. But it’s not looked at as a problem to be fixed. Of all of the zillions of challenges that come with autism, I have never, nor do I know anyone who has ever, thought, “Oh! You know what? A really important thing that we need to fix is make all of our kids make eye contact.” Because it’s just not crucial. Communicating wants and needs is. Coping strategies for anxiety is. Making the world functional and accessible is.

And I wonder, why is Brain Power so intent on increasing eye contact? Is it truly because they think it’s better for the autistic kids themselves, for the kids’ quality of life, or is it to try and fit our kids into a mold of “normal” that in reality doesn’t exist? Do their beliefs come from the same people who believe that we should eliminate scripting and stimming? Who are they really looking to benefit here?

The article concludes with:

Attending were Sara Gaynor, a special-education teacher, and her 11-year-old son, Sean. After trying out Glass, Gaynor said her son told her: “They’re awesome. I think those glasses make me smarter.”

Later, Gaynor recounted how Sean jumped up, arms outreached, and told her, “I think I am breaking out of an autism prison!”

I don’t know Sara Gaynor. I don’t know her son. I do believe that he liked the glasses. Like I said, I think a lot of kids would. I think the glasses hold great potential. But the way in which this quote was written into the article makes it sound like glasses = smarter, because autism = dumb. And Sean’s quote at the end? I don’t know how much I believe that this boy truly said those words. But if he did, it breaks my heart. Because it means he was raised believing his autism is a prison. And what implications for any autistic kid reading that article – to plant the thought in their own heads that their neurology, their wiring, is something so terrible that it should be compared to a prison.

I need to do more research, I need to read more about the company and their studies and their beliefs. Again, I do not claim to be an expert on this, to understand all of it, to fully know every detail about how the app would work. But at first glance, I am more than a little concerned.

Last week’s IEP meeting

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Last week we had an annual review IEP meeting for one of our 8th grade students. Because he is now 14, he came to the meeting for a few minutes, to discuss his transition plan. This boy is one of the most empathetic students I have. He carries a tremendous amount of anxiety, which I am willing to bet has to do with his diagnoses and learning challenges, but also with trying to figure out how to be such a sensitive soul in this world.

He walked into the room, and took a seat. He looked around the table and said “hi” to his mom, and then quickly addressed every single person at the table and said “hi” to them, too. Our IEP team facilitator greeted him, told him that we would all love to hear a bit about what’s going well for him.

“So, maybe tell us, what’s your favorite class?” she asked him.

“Oh, uh…Science.” he replied. Then, scanning the room, realizing that several of his teachers were there, but not his science teacher, he quickly added, “But, uh, I love Math too. And Reading is okay. And Language Arts. And hey Jen, I like Speech, too.” There were a few smiles, but I felt myself getting teary. I totally got what he was doing. He was terrified of offending one of us. So much so, that, his math teacher responded, “It’s okay. I know you don’t love math. And I would never be upset with you for saying so.”

Our team facilitator moved on. “You and your counselor met to talk about what you’d like to do in the future. You mentioned that you would love to stay at [our school] for high school, and that after high school maybe you would work with computers or animals.”

His counselor jumped in. “Yup, and we talked about way down the road, where you might like to live. Remember, you told me that one day you would like to live on your own, and not with your parents?” he nodded, agreeing with her, and then caught his mom’s eye and froze. Oh no, I could imagine him thinking. What is Mom going to think to hear that I don’t want to live with her? 

“Uh, Mom…” he tried to explain. “I was just thinking that one day I’d like to have an apartment. But, uh, it’s not that I don’t love you. Because I do. You and Dad have been really good to me. But it’s just…” his voice trailed off as his eyes quickly darted from person to person.

His mom smiled, and gave a kind laugh. “It’s okay, buddy. I would hope you want to live on your own some day!”

After talking a bit about his career aspirations, and his love for computers and cartoons, his counselor sensed his mounting anxiety and backed up a little bit. “Now, all of this is going to be a long time from now. And we’re talking about things that might happen. But is it okay if your ideas change?”

“Uh…I guess so…” he said.

“Will anyone be upset with you if you change your mind about what you want to do or where you want to live?”

“Uh…I guess not…”

“Right. Because we’re just thinking. None of these are decisions that we have to follow. We’re just imagining. But just because we’re imagining does it mean you have to do these things?”

“Uh…no?”

“No, it doesn’t. And we don’t even have to worry about those things. Those are your long-term plans, but right now, our main focus is that you’re going to finish 8th grade and then go to 9th grade.”

“Um. Okay. Yes.”

He headed out of the meeting then, after saying goodbye to every single one of us, and giving his mom a hug.

I think we were all overcome with emotion. And I totally got it – I understand that desperate need to please everyone, the fear of what people will think of you if you don’t give equal attention or love or praise. For the rest of the meeting, we talked through his IEP goals, but we kept coming back to his sensitivities and anxieties. Because among his autism, among his language and learning disabilities, sensitivity and anxiety are at his core. They affect every part of what he does every day. And the same is true for so many of our kids. I truly believe – there are times when noncompliance or overreactions, or other behaviors, are just a mask for that panic inside. And I am not autistic. I don’t have a language disorder. And it’s taken a long time for me to be able to identify my anxiety and sensitivity and put it into words. So I can only imagine what it’s like for our kids. And I feel really blessed to get to help them do just that.

“That’s private!”

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The concept of “privacy” is a hard one to teach. It’s a very abstract concept, that has many exceptions, and no one hard-and-fast rule. Most of our special needs cherubs, especially those on the spectrum, thrive on hard-and-fast rules, and exceptions are tricky. Abstract concepts, like privacy, are hard for our kids to understand and generalize. They may act in ways that seem disrespectful or rude, but really, they just don’t understand. This may look like a kid who picks his nose in front of his classmates; a kid who scratches himself in private areas in the middle of the lunchroom; a kid who shares exactly what he did in the bathroom; a teenager who announces to the class that she has her period. This is a kid who might have heard, many times, from many adults: “That’s rude,” “Don’t say that,” “That’s inappropriate.” The problem is – those terms are equally as abstract and confusing, and have just as many exceptions to the rule. If a child is picking his nose during class, and hears, “Don’t do that,” it may be unclear to the child exactly what you’re saying. Should he not pick his nose in this specific class? Should he not pick his nose right now but he could in a few minutes? Is nose-picking in its entirety something he should never do? These are answers that you or I might have figured out on our own when we were kids, but neurologically, his brain doesn’t make those conclusions. Can you imagine how stressful and anxiety-provoking that would be, to just not understand?

Sometimes, when we start to really teach and explain the concept of privacy, the pendulum swings to the other extreme. Instead of sharing every single bodily function, nothing gets shared. Everything is overgeneralized to being “private.” This is when you ask the kid what he had for dinner last night and he said, “I don’t want to talk about it, that’s private.” Or when a parent asks his son what he has for homework, and the response is, “That’s personal.” It’s when the student tells you, multiple times throughout the week, “I need to talk to you in the hall” and what he needed to say was either, “Max is absent today,” or “I have P.E. next,” – none of which are actually private. But the drastic shift shows that he’s working on it, trying to get his brain to understand.

As with so many of the concepts that we try to teach our kids, perspective-taking is an underlying necessity. If you think about how you act in your own day-to-day life, the reason you don’t walk into a meeting and announce your bathroom habits is because it’s rude and inappropriate, sure, but ultimately it’s because others would have weird thoughts about you. And those weird thoughts may lead to a short-term and/or long-term consequence about how your colleagues view you. Without even realizing it, in a split second you evaluate what you want to say, then evaluate the situation, realize that in this specific situation, saying what you want to say would result in others having weird thoughts, and you decide not to say it. And you do this automatically.

But our kids don’t. So we talk them through it. We say to them, “Hey Noelle? When you keep tapping Sam on the shoulder, he might have a frustrated thought. He is trying to work, and it is very distracting to him to keep being tapped.” We say, “Noah, when you pick your nose at the lunch table it makes the other kids have grossed-out thoughts. They might feel they don’t want to sit with you if you’re picking your nose.” We label various settings. We say, “Sarah – this is an unexpected time to be making people laugh, because we are trying to work. You can save your joke for lunch time; that would be a more expected time to make people laugh.”

We teach our kids that actually, everything is expected and unexpected at one point, which is why curricula like Social Thinking® are so helpful, because they don’t tie our kids down to a set of rules that in reality have a million exceptions. Instead of teaching them what to do, we teach them how to think so that they can figure out what to do. We teach our kiddo that if he runs into my therapy room and announces to the group that he just had an accident in the bathroom, the other students will have uncomfortable thoughts, because having an accident is private, since it’s about his own body and bathroom-related issues, and other kids don’t want or need to hear about that. And we don’t teach him that punitively, we teach it factually, in a calm voice. We then give him the flip side, which is to label what he could do, and how he could think about it. We explain that announcing that he had an accident to a teacher, after she is in the hall away from other people, is completely expected in that situation, and would not make the teacher have any uncomfortable thoughts; the teacher would have happy thoughts and proud thoughts and the teacher would help him solve this problem (i.e., call the nurse). So it is not as though telling someone he had an accident is always unexpected or never “okay”. It just depends on where, with whom, etc. And that’s what we teach. And our kids need help, and they need to be talked through it time and time again. But they get it. They can get it. And they learn how to think and consequently how to act and then they are more independent, and more successful. And that’s, well, just awesome.

The silly 911 script

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I’ve written before about scripting, how it’s safe and comforting to our kids, how it’s often a way for us to get “in” to their brain and form a connection, how scripting can be so positive and we should utilize it. (And as a side note, I thought of another real-life example of scripting. When my favorite yoga teacher ends a class, she always, ALWAYS ends it with, “Drink water, be good to yourself.” And it’s a routine and I love when she says it, and if she didn’t, I would feel unsettled)

There’s a script/routine that I do at least once a day with one of my kiddos, Joey [not his real name]. Joey has high anxiety and often feels as though a problem is an emergency, and will react as such. For example, in the past, his anxiety combined with his impulsivity would lead Joey to push a child if he lost a game, call a peer stupid if Joey wasn’t picked to go first, or just get stuck ruminating if he wrote his name messily. Joey has learned all about the problem scale and though in a moment of calm he can understand and identify what’s an emergency and what’s a glitch, and what’s in between, he has a hard time accessing that in the moment.

When I teach the Problem Scale, to any of my kids, I often say that since a number 5 is an emergency type problem, if there’s a problem for which we don’t need to call 911, it’s probably not an emergency (e.g., though your pencil falling on the ground might feel like an emergency, we don’t need 911 to help with it, so we don’t need to react as though it’s an emergency). Joey latched onto this almost as a security blanket, and for whatever reason, it clicked in his brain.

So when a problem arises, like he spills water on his worksheet, he often turns to me and mimics dialing on a phone and says, “Do it, boop boop boop.”

And I hold out my palm like a phone and I pretend to dial and the noise I make for the pretend numbers is, “Boop boop boop.”

I hold up my “phone” to my ear and I say, “Hello, 911? Yes, we have an emergency. Joey spilled water on his sheet. Oh. Really? Hmm. Okay. Thanks. Bye.”

Then I “hang up” and tell Joey, “911 said it’s just a glitch and they don’t need to come.”

And Joey laughs and laughs and then moves right on. Calm. Comforted. Reassured.

We have done this countless times. For not winning a contest, for tearing a corner of his paper by accident, for not getting to have speech one day if there’s an assembly, for losing a game. The script is always the exact same, and it brings Joey comfort. For whatever reason. The reason doesn’t matter.

So yesterday when there was an assembly and a something happened that Joey perceived as upsetting and problematic, he tugged on my sleeve and I knelt down and he mimicked dialing, so we whispered the script to each other – and he was fine. He rocked that assembly and not only was I psyched that the script worked, but I was proud. He sought it out, he used self-advocacy, he knew what he needed and what he needed was reassurance, and this is how he got it. And that is no small accomplishment.

Scripting

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I realized that I don’t actually know a really great definition of scripting. So, if anyone else has one, please pass it along. The way I talk about scripting is that it is repeating phrases or words, sometimes from books or movies or t.v. shows, sometimes from social stories, sometimes from what a parent, teacher, or friend has said. Sometimes scripts are used in place of novel language, sometimes they are used because they’re comforting, and sometimes they’re just fun.

Examples of scripting can include:

-The 7th grade boy who, every Friday, says to his friend, “What day is it today?!” and waits for her to reply, “Friday!!” and then giggles and laughs to himself

-The 5th grade boy who will only communicate in metaphors related to the Muppets

-The 6th grade boy who, when another child is acting silly, quotes his something his speech therapist said once, and says, “Ohh, let’s remember to keep our silliness at a level 2!”

-The 4th grade girl who, when anxious, says, “I do not know how to tie my shoes” because on a t.v. show once, the character was anxious about not knowing how to tie his shoes

Now for all of those – they serve a purpose. Scripting is purposeful. It’s not useless, it’s not a detriment to communication. It IS communication. And I got to thinking the other day, how we actually all script. Not in the same way that our autistic kiddos might, but we all have our little rituals and sayings and routines that we say and do and enjoy.

Like:

-When my dad used to come home from work when I was little, he would always say, “Hello hello!” and if he didn’t, something felt off

-A parent saying, “Good night, sleep tight, don’t let the bed bugs bite” every night, before leaving their child’s room

-My brother, upon seeing me, saying, “How’s your face?” and me replying, “You know, it’s okay” [which makes no sense, but it makes us smile and it’s our routine, and it’s communication and scripting and who cares]

-My extended family reciting the same stories over and over again because they are funny and comforting and it’s routine and ritual

-Quoting “Friends” episodes with my friends, because they’re hilarious

Think about the phrases, the words, the scripts that you use to communicate with your loved ones. We all do it, to a degree. And it’s okay.

So when a child you are working with is scripting, script with them. Use their interests and scripts to communicate. Figure out what they’re trying to convey. And yes, there are times that they might just be having fun, because scripting is fun. Like my student last year who preferred scripting episodes of “The Simpsons” to doing any work, ever. And in that case, it’s okay to call it what it is. And to say, “First let’s do some work, then we can script at the end of class.” But if a student says something seemingly random, and you’re not sure why, there’s usually a reason and a purpose. It might take time to figure it out, but it’s there. And it can really help you figure out how they’re feeling, what they’re thinking, and what they need from you.

What has your experience been with scripting, either personally or professionally?

Dropping the rope

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This summer, I spend time talking with one of our campers who refuses to walk away when another camper is upsetting him. “But then he will win,” he tells me. “I have to argue back until he accepts that he’s annoying me.” I explain that by walking away, the same message gets sent. Drop the rope.

One of our kiddos walks into a situation where another camper is, who triggers her. She tenses up, then takes a deep breath, and asks, “Can I please move to a different location?” She drops the rope.

I am losing consciousness and about to pass out. I fight it, I’m determined to beat it. But I’m losing. So I stop fighting it and let it go. Whatever happens, will happen. I drop the rope.

I’m in a moment of increased anxiety. A few thoughts and fears spin and swirl around my head and I am so tempted to focus on them, dig into them, pull them apart. And I do, at first. I think and spin and check and worry and try to push everything out of my head. But it just increases my anxiety. So I breathe. And I sit with it. I drop the rope.

This concept is new for me. But now that I’m thinking about it, I realize that it’s everywhere, in all of my life. At work, with kids, with friends, with loved ones, with myself. 

When you find yourself in a tug-of-war, there are two ways to handle it. You can pull and pull until you can’t pull anymore. Or you can drop the rope and let it go. And it’s a concept that it’s hard for….well, everyone, I think. It’s something we teach our kiddos all the time. Ignore, walk away, focus on a different thought, take a breath, you’re okay. And it’s so hard for them because they want to fight the anxiety, the meltdown, the annoying peer, the fear. And really, I can’t blame them. I want to fight all of those things too. Sometimes there’s a worry, “But if I’m not fighting, I’m giving in. I’m giving up. I’m losing.” Giving in is not the same as giving up. Surrendering is not the same as losing. You are still in control. You’re still making the choice. There’s a peace that comes by dropping the rope. Which isn’t to say that the trigger, the thought, the person, the situation goes away. But it’s empowering (albeit hard and scary) to take control of the situation and decide to let go. 

You know I love metaphors and analogies – they help me understand everything, my work, myself, life. So. If you find yourself dumped into a big pool of water, your instinct is going to be to panic. To flail, thrash, scream. You’re panicking and the more you panic, the more you fight, the worse your fear gets, the more exhausted you get, and you accomplish nothing. But if you breathe. If you lay on your back. If you float. You’re still in that pool of water. You might still be scared. But you’re giving yourself a breath, a lift. You’re accepting where you’re at, and you gain both physical and emotional strength by doing so.

Sit with it. Drop the rope. 

And gain strength.

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Feeling the feelings

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“I’m so sad!” He sobs. “I don’t want to leave. I’m going to miss it so much!” Tears stream down his face as he clings to his mom, then clings to his counselors, then back to his mom.

It’s the last day of camp. And he’s heartbroken.

We started previewing the end of camp (Week 7) during the middle of camp (Week 5). Because it takes that long to preview, to process, to feel, to cope. We talked about it every day. And each camper’s response was different. Some ignored, some yelled, some hit, some cried, some became clingy and some became distant.

This little guy did a lot of the above. Some days he was super silly, some days he claimed exhaustion and refused to participate. Some days he got angry and hit.

But on this last day? He was just sad. And as he screamed and wailed about how much he didn’t want to leave, how sad he was, how much he would miss camp, my heart broke for him. Because even as staff, we feel that feeling too. Camp is not just special for our kids, it’s special for us, too. And as I heard him cry over and over again “I feel so sad,” I couldn’t help but realize how huge that was. This kiddo was not hitting, not shutting down, not fighting with other campers, not telling staff that he hates them. He was feeling his feelings. He was labeling his feelings. Do you see how huge that is?? So I felt sad for him. We all did. But in addition to that sadness (not instead of, not a replacement, we spend all summer teaching our kids that they can feel multiple feelings and that it’s okay, and so can we), I felt proud. He was labeling his feelings. He was feeling them for what they are. And that, is a major success.