Tag

ASD

Anxiety explosion

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“It’s OPtimism. It means when you are optimistic.” I hear Tyler say.

“No. AUTism is different.” My ears perk up. I tune in.

“Do you have autism?” A third voice. Nick.

“Yep.” says the matter-of-fact OPtimistic (and autistic) kiddo.

I miss a few exchanges while I answer a very important Lego question from another group of kids playing. When I tune back in, Kayla is half-giggling, half-babbling.

“Autism means you’re stupid! You have a dumb brain. You have a cuckoo brain.” I catch her eye and I know, this is not her core. This beautiful, smart, hilarious fourth-grader doesn’t believe this. I know she doesn’t.”

I casually join the trio. “Kayla, what were you talking about? I couldn’t hear you from over by the Legos.”

She shrieks. “Nothing! I wasn’t talking about anything! I’m sorry I’m sorry I’m sorry! Just forget it!”

I try another way. “Oh, okay. I just couldn’t hear everything. Were you talking about autism?”

Another shriek. “Yes but I didn’t mean it! I was just kidding! I’m so sorry! I’m sorry!” Tears roll down her cheek.

Nick watches, fascinated. He is the one who has been asking kids for weeks if they have autism, trying to get a dialogue going. I think that maybe it’s his way of trying to understand himself. Because he is, certainly, autistic. Nick oh-so-helpfully says, “Oh, so you’re autistic and so is Tyler. That’s why you both have meltdowns.”

Kayla is quiet, and she looks at me. Tyler keeps building with his blocks. So, I answer. “Well, autistic kids can have meltdowns. But so can people who aren’t autistic. I’m not autistic and I’ve had meltdowns before.”

Kayla chimes in. “I have meltdowns sometimes! Really big ones where I can’t stop running in circles. It’s like a tantrum kind of.”

I continue. “So autism is not a bad thing at all. It just means that your brain is different. So some things might be easier for you, or harder for you.”

“Right,” says Kayla. “And you might have trouble learning or trouble making friends.”

“You might,” I reply. “But a lot of people have trouble with those things, and they’re not autistic. So if you’re autistic, does it mean you’re stupid?”

“No!”

“Nope. It doesn’t at all.”

Later, when we’re all finished playing, we go find parents. I check in with Kayla’s mom, tell her about our conversation. She’s worried. “I just don’t know what to do. She’s known about her diagnosis for over a year. And I think that often she feels good about herself, but sometimes at school….she just doesn’t. She knows she’s different, regardless of how high-functioning she is.” We talk a little bit more. Then I turn to Kayla. She’s standing, staring into space, tears rolling down her cheeks.

“Kalya?” I ask softly. In a flash she is on the ground, wedging herself on the floor, with a table and chairs in front of her. She’s sobbing. “I’m sorry I’m sorry I’m sorry! Everyone hates me because of what I said! I’m stupid and dumb!”

“Do you mean when you said kids with autism have cuckoo brains?” She nods.

“Ohhh. Guess what, though. Nobody was mad at you at all. Everyone knew you weren’t being serious. And I know you weren’t being serious. And I know that kids with autism are actually really smart.” she starts to nod, but another wave sets off and she lets out a shriek.

“No! My brain IS stupid! My brain is wrong! I AM dumb! I am so mad at myself for saying that!!!!!!” I kneel down, not too close, and say very softly, “What can I do to help you right now?” She says that she just needs to hide there and cry. Which makes perfect sense to me, truly. So her mom says, “Okay, Kayla. But soon let’s go home. And you will feel better. Right now you are worried about it, but when you feel better you won’t be.”

Her mom and I talk a little while longer, and eventually Kayla pushes the chair and table back and stands up. “Okay,” she says. “I am ready to go. Maybe when we get home I can cry some more in the dark.” She climbs into her mom’s lap and says, “hold me.” They rock and hug. I catch her mom’s eye, and her mom says to me, “Thank you. We’ll be okay. We’ll talk more about it when she’s calm.” Nobody knows their child better than a parent.

As I leave them, her mom is engaging Kayla in one of her favorite movement activities. Kayla is smiling, her body is relaxing, and she is calm.

My heart broke for Kayla, tonight. Because I know what it’s like. To believe something awful about yourself. And to have moments of clarity, but lose those moments when anxiety roars. To cycle back and forth, around and around, unable to let go of a thought. To not be able to trust the truth that you know in your calm moments.

But I think what we have to do is exactly what Kayla did, and does: allow ones we love and trust to help us during our storms. Be real. Let ourselves be vulnerable and cry and shriek if we need to. Know that we can cry in a dark room. Accept help from ones who won’t judge us. And listen to the truths as soon as our brains are quiet enough to believe them again.

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.

A Social Thinking Lesson

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Disclaimer: As per usual, this post is completely unedited. And I’m tired. So it is likely hard to follow and doesn’t make sense. And I realize that I say that all the time but this time it REALLY is a mess. Like, for real. And it’s hard topic and post to write about coherently because it involves so much dialogue and inner thoughts. So, apologies in advance. But, hopefully the content and the ideas behind it come through. 

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One (of about a billion) things I LOVE about my job is that we deal with anything and everything. When situations arise, as they do with the kids we work with, we problem solve, and address immediately. And we’re lucky to be able to do that, in an environment that solely focuses on stress management, social competency, and self-awareness, without the academic demands. But more on that another time.

So when it came to my attention that staff members had overheard their pre-teen male (ASD) campers making jokes about rape and sex, we acted quick. That day I spoke to my boss, who is a clinician, who spoke to several other colleagues of ours, she got back to me, and I created a Social Thinking lesson based on another lesson from a colleague to do with the groups. The very next day, conversations were had with all of the participants and I did two groups on that topic. 

I don’t tend to talk about specific things I do with clients/students/campers in therapy or groups, but I felt really proud of this lesson and got a lot of good feedback from parents, staff, and most importantly, the campers themselves. So, I will share. 

I’ve done the lesson so far with two groups. To frame this: Both groups are five or six pre-teen or teenagers, one group is all boys and one group is all girls. All of the campers have social cognitive/competency deficits, and most of them have an Aspergers, ASD, or related diagnosis. 

We began with a discussion about what humor is. That was easy for them. I then took out my whiteboard and drew two columns, “Positive” and “Negative”. I explained that there can be positive and negative effects of humor, based on how it’s used, what the topic is, and who the joke is shared with. I was SO impressed at how quickly they thought of things. “Positive” effects that they thought of included: people will like you; make friends; get out of an awkward situation; avoid dealing with something hard; and “Negative” effects included: people think you’re a bully, people not wanting to be around you, getting in trouble with the law, getting suspended or expelled, getting a bad reputation. This was with pretty much no prompting. They had SO much to say. 

After we had flushed out that discussion, I introduced the idea of “deadly jokes.” The concept being, that there are certain topics that if joked about, almost always can have negative effects with friends, family members, teachers, colleagues, etc. I told them there were at least 7, and challenged them to come up with them. The boys group immediately came up with race/religion/nationality and sexual orientation. The girls instantly talked about disorder/disability, mental health, and sex. Overall, between both groups, our list included:race, religion, nationality, sexual orientation, sex, disorder/disability, mental health conditions, coworkers/colleagues/teachers/students, physical looks, violent crimes. Again – this was with almost no prompting. 

During the boys group, one of the guys said, “I know those are jokes that certain people would find offensive. But I would never joke about the topic that the person found offensive.” So we had a big conversation about perspective taking and theory of mind – that you can’t KNOW what a person is dealing with, you can’t KNOW that offends a person unless you know them inside and out – and even then, you can’t be sure. I got some rigidity and push-back, so we went through each category. “Can you ALWAYS know someone’s religion based on looking at them? Can you ALWAYS know someone’s sexual orientation by looking at them?” (by the way – that answer that I got was ‘yes, sometimes’ so we had a conversation about stereotypes and how they are often based in fact but can’t be our sole piece of information). We talked about things you can know by looking at a person and things that might offend them that are “invisible,” that you would never know otherwise. They were very interested in the idea that jokes could ultimately involve the police or authorities, and one of them brought up what would happen if you joked about a bomb at an airport. Another boy responded, “But you’d be joking!” So – another conversation about perspective taking, how a bystander or official wouldn’t KNOW you were joking, and there are protocols they must follow.

And then I brought up rape. Because that’s where this all stemmed from. The interesting thing? When I asked, “What about joking about rape?” they ALL vehemently shook their heads and said, “No no no! You can’t joke about that!!” but when I then follow up with, “Okay. Who knows what rape is?” not a single one of them knew. 

And that’s why we do these lessons. The things our kids say – it’s not that we let them get away with it, or make excuses, but so often they just don’t know. Some of the boys admitted they thought rape and sex were the same thing. Some said they heard of it and knew it was bad but didn’t know what it was. So we talked about it. We talked about why you can’t joke about it. And they all left with an understanding.

The girls group was different. One girl brought up how friends joke with each other about things that others couldn’t joke about – like girls saying to each other, “Omg, you’re such a bitch” can be joking and harmless or harmful depending on the relationship. Another girl referenced “Mean Girls” and how they call each other “sluts.” A third girl said that she would be really upset if anyone made a joke about mental health conditions. And a fourth girl shook her head and said she wouldn’t care about that, but if anyone joked about learning disabilities she would rip their head off. Again, a conversation about differences, how one size does not fit all, how each person is different. The girls role-played what they could do if they overheard jokes like those, if they bothered them, or if they didn’t. We talked about how it’s okay to not laugh at a joke, even if everyone else is.

These are things our kids don’t know. These are things that if they aren’t taught, they won’t learn. And saying to them, “We don’t say that!” or “That’s inappropriate!” isn’t enough – because they don’t know WHY. It’s meaningless and unclear to them. We have to clarify. Even if it’s uncomfortable, even if we want to maintain innocence. We have to. For their sake. 

 

Progress Reports.

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It’s Progress Report time, which, for a special education school, means reporting on the progress of each benchmark within each goal, for each student. For me, it’s reporting on their progress towards their Receptive/Expressive Language (speech/language) goal.

And while doing that, I’ve realized how much of our data is confounded. I mean, obviously. There are a million different factors and that goes with the job, with the therapy. But I have so many students who live very much in their heads. Some who can even express what it’s like to be inside their minds and their bodies, who can explain, whether it’s through a script or a drawing, how their brain works.

And it isn’t easy for them to come out of their heads. And it isn’t easy for them to learn in the way that we teach. Easier when we modify, easier when we cater toward their needs and personalities, but still not easy.

So when I report that a student did not achieve a benchmark, did not obtain x/y/z skills, I’m struggling with it. Because I want to put in bold underneath:

Disclaimers:
-Student may know way more than s/he is able to show us.
-Student’s performance varies based on his/her internal state and sensory regulation.

Now I don’t know how much the Dept. of Ed. would like that (sarcasm) so I don’t do that. But I want the parents of my students to understand. That it’s not necessarily that their child can’t do something. Yes, there are things they can’t do, can’t understand, can’t comprehend. But I truly, firmly, strongly believe that more often than not? It’s that the world around them is not shaped in a way where they can SHOW what they know. Where they can access the knowledge that’s being taught. Where they can truly express their knowledge, thoughts, and comprehension.

I just want parents to know that. That I think their kids, all of them, are brilliant. That I understand them. A lot. On a nonverbal way, on that I-understand-him-through-my-soul way. That no matter what my Progress Report says, no matter how many benchmarks are or are not achieved, I will not give up. I will not think their child is incapable, not think that they have plateaued in development, not think that they do not or cannot understand something. I will not stop trying to meet them on their level, and I will not stop trying to teach in a way that they get. And if that means scripting back and forth with a student for 20 minutes so that I can explain a concept in a way that they understand? You bet I’ll do it.

Your kids are brilliant. All of them.

Please know that I know that.

The beautiful symphony of scripting

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Please. please. please. read. this. post.
This post, these words, they explain, better than I ever could, why I indulge my students’ scripts, why I try to meet them in their world, or at least at the fence. 

(via Diary of a Mom)

 

Brooke skips through fields of words and frolics in their sounds. She rolls from one to the next — Water Water Besha Besha — filling her pockets with the ones that delight her senses, dropping the rest on the grass with a satisfying thud as she runs, overcome with squealing laughter, a vocal gymnast throwing sounds twirling, twisting, flipping into the wind. My girl loves sounds. As tongue-tyingly frustrating as they may be when forced into the box of Other People’s Perceptions, words and sounds and sounds that are words are wondrous, joyful, FREE when unburdened by Communicative Purpose. 

From today’s post – a playground of words, featuring Julia Bascom –http://wp.me/pNO8N-43n