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Mon
11 ^th

Autism + Recovery?

Posted by Jen — 2 Comments

I just read this article from the New York Times Magazine. Before you click on it, let me tell you what the title is: “The Kids Who Beat Autism.” Yes, it made my blood pressure increase before I had even read it. I get so defensive about topics like this. I’ve written before about this topic, about the issues surrounding the idea of “recovery” from autism, about the dangers of viewing autism as an awful disease that needs to be cured. (As a side-note, I do really appreciate that the article quoted Ari Ne’eman and gave some of the autistic adult perspective. I really, really appreciate that, a lot.)

There are many blog posts and articles already out in the blogosphere, many of which are written by autistic adults. And I can’t even imagine what it’s like to be autistic and reading about how the core essence of your being is something that should be changed or fixed (here is the blog post that led me to the article initially).

I am trying to be open-minded and see both sides. And I can sympathize, and try to understand, that if you are a parent of a child who is struggling, you would want to do anything and everything in your power to “fix” or “cure” that struggle. I can try to understand that if someone promises you “recovery,” you would do anything you could to get to that point. I can try to understand that the concept of “a neurotypical life” might have seemed much more enticing than “an autistic life.”

Here’s the problem. And actually, there are a lot of problems. One of which is the whole idea of recovery in the first place, but that I babbled about a lot in that previous blog post. The issue I’m toying with right now is that there is no one autism. I believe in my soul (and this is not the time or place to talk about causes of autism or influential factors because I have not fully done my research and am not open to an argument on the topic right now) that there are many contributing factors to autism. I believe that there is no one cause. I believe that there is no one treatment. I believe that while there may be a cluster of similar symptoms, every case, every person, is ultimately different.

Take anxiety. Depression. OCD. PTSD. I don’t feel confident saying that there is ONE way to treat each of those disorders (or any other mental health condition, for that matter). Sure, there are best practices. Sure, there are evidence-based studies. Yes, I believe in cognitive-behavioral therapy. And dialectical behavioral therapy. And individual therapy and group therapy and residential treatment and exposure therapy and medications and alternative treatments and……the list goes on and on. But what works for one doesn’t necessarily work for another. I have many friends with the above diagnoses, and while some of them have some of the treatments in common, each person’s course is different. Because each person is different. And the causes are all different.

Not to mention – are we really “recovering” from those mental health disorders? I would argue in a lot of ways, no. Anxiety is in my wiring. It always has been. It’s in my family genetics, it’s in my blood, it’s in my brain. No, it doesn’t consume me. Yes, I’ve learned strategies to handle it. Yes, I’ve done the therapy route and the medication route and the alternative treatments. And yes, those things helped immensely. But does that mean that I no longer “have anxiety” or does it mean that I have learned strategies and tools to handle my innate wiring in the most effective way?

I can think of several friends who dealt with acute bouts of anxiety or depression, got some support and help for them, and now don’t really deal with that anymore at all. Is that “recovery”? Does it mean the rest of us should aim to achieve that same goal? Or does it mean that everyone is different, that maybe some things are acute and some things are chronic, that some things are innate in our wiring and some things are situational, some things occur when many factors join together and some things seem to disappear as soon as one factor disappears? Who knows, and I don’t think it matters.

I worry that settings our sights on autism “recovery” or “cure” sets up countless families to fail. Because they might have tried all of the zillions of treatments too, and…..their child is still autistic. But that doesn’t mean they’ve failed. I just want to hug all the parents and tell them, I KNOW you’re doing the best you can. Please believe me. You don’t have to prove it by making your child “recovered.” Help your child be the best version of himself that he can be – autism included. And of course – would some individual’s quality of life, or ease of life, be easier if they didn’t have _____ (insert whatever diagnosis or disorder)? Yes, of course. Might be easier. Might be simpler. Which is why I have such compassion for the fights we all take to help ourselves and our loved ones, whether it’s with a physical disability, mental disability, neurological disability. We don’t want things to be hard, and if we have the slightest inkling that we can make things easier, we want to. I guess it’s just that there are multiple ways to make things easier. There’s eliminating something, or there’s working to embrace something.

I don’t know how to end this. I don’t know what else to say. I’m afraid to post this. To potentially open up a can of worms. But I guess that’s the point, right? We have to talk about the hard things, the scary things. We have to disagree sometimes, have to debate and discuss. That’s how we move forward, that’s how we remove stigma from conversation topics, that’s how we grow and change.

So, here you go. Dialogue. Discuss.

Thu
07 ^th

Little snippits

Posted by Jen — No Comments

Snippits of thoughts that I have tried to turn into blog posts but can’t, yet:

–Being a middle school or high school girl is hard. I so remember. It’s hard enough for a neurotypical girl, and when you add an autism or other social-communication diagnosis, it makes it that much harder.

–Endings, transitions, change are so hard. We as staff dread the end of the summer – and it’s that much harder on our kids. Who don’t necessarily have a happy transition back to school coming, who might not even know if they’ll make it through this year at school, who don’t have friends to look forward to seeing, who are dreading leaving camp, a place where they have safely been nurtured and gently pushed forward, and observed in a non-judgmental way, and supported no matter what they said or did. And so the transition behaviors we see…well, they just make sense. It makes sense that kids revert to old behaviors that had been extinguished. It makes sense that there is more stimming, more scripting, more tears, more anger, more hitting. It makes sense that there is yelling at friends and staff, trying to burn bridges that were made, because isn’t it easier to leave if you convince yourself there’s nothing behind to miss? We see it every year and it breaks my heart every year because I know that however hard it is for me, it’s a million times harder for them.

–I keep replaying a conversation that we had with one of our 10-year-olds the other day as she struggled through a meltdown. “What do I do when I’m not mad, I’m just sad?!?!” she screamed, as she sobbed and lunged herself at us, trying to find relief. “You have no idea how this feels!!! I’ve never been so mad and it’s all in my body!!” she screamed, as she shook and her teeth chattered. You could see the anger and sadness and despair swirling throughout her body. While we sat with her through it, we took turns calmly empathizing with her. “I do know how that feels,” I softly and slowly told her. “No you don’t!!!!!” I waited. “I do,” I said. “I hate that mad feeling. I know what it’s like to be so mad that the best solution seems to be to use my body to calm myself down.” She stopped screaming and looked at me. My co-worker and I spent the next hour or so empathizing and sharing bits and pieces from our own life, just tidbits that might be helpful, but all the while….my heart was breaking. Because we weren’t lying, we DID know how this girl felt. It’s just that we are able to internalize it. Keep it inside of us. And who knows, who’s to say that’s better? Who’s to say that walking around with panic and anger and despair inside of us is better than screaming and crying and hitting until it all comes out?

—Collaborative Problem Solving works. Like, really, really works. Think back to when you were a kid, or a teen, or even now at work in a meeting. Are you more likely to do something when you are told to do it? Or do you feel better, and are you more likely to agree and compromise when you’ve been able to share your thoughts and feelings, to a non-judging listener, and when you’ve been able to be a part of the solution? Our kids are brilliant. BRILLIANT. And sometimes they just need to be heard. And usually they’re right. Try to compromise with them, let them be heard, and you’ll be astounded at the difference it makes.

–And, a related, reminder: kids are doing the best they can. They really are. They might annoy you, push your buttons, frustrate you beyond belief, but if you see it through the lens of, “They are doing the best they can with what they have,” it helps. (And, as always, a connection to us: we are doing the best we can, with what we have, too.) Compassion, empathy, understanding.

Wed
23 ^rd

A Social Thinking Lesson

Posted by Jen — 2 Comments

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.

Tue
15 ^th

A hypothetical note to parents

Posted by Jen — 3 Comments

[Ed note: I started to write this using “I” instead of “We”, but it didn’t feel right. We do everything as a team, we have been a team for years, and despite not having asked everyone if they share these thoughts, I am nearly certain that they do.]

We are in Week 3 of our 7 week program. We see it every summer – Week 3 is when things shift. Kids are getting to know their peers better, the novelty has worn off, group leaders are getting into the nitty-gritty of social thinking development, kids are feeling more comfortable around us and in our setting, and, as we always say each year, “The honeymoon period is over.”

So we start seeing behaviors that we might not have seen the first two weeks. Refusal, noncompliance, anger, meltdowns. And we aren’t bothered by that. We expect it. We know that in a lot of ways, it demonstrates the kids’ comfort with us and our program. They are being themselves, allowing for vulnerability, and letting us step in and guide them through it.

Sometimes a meltdown turns physical. We know that. Please know: you do not, ever have to apologize for your child’s meltdown or physical aggression. We know the difference between a tantrum and an autistic meltdown. We know this is a meltdown. A neurological storm, a complete inability to do anything except ride it out. Please know that we don’t think your child is being purposely defiant or difficult. We get it. We don’t think any different about you or your child post-meltdown. We aren’t upset if papers got torn up, if the walls were colored with markers, if water was purposely spilled. We are okay if we get scratched or pushed. Please know that in those moments, our focus is in no way anger or hatred toward what is going on. It is purely compassion.

There is something powerful and beautiful about every single moment we spend with your kids. In the midst of a full-blown meltdown, complete neurological storm, a level 5 on the “volcano,” the powerful part is that we are able to be there for your child. To help them stay safe and regulate. To let them know, usually nonverbally, that they are not alone. That we are there, that they are okay, that we understand. It is powerful and beautiful to be with your child at his most vulnerable moment, when he has lost complete control of his words and body – and to know that we are entrusted to be his compass and guide him through the storm.

The moments we hold onto are not the aggressive ones. It’s the moments when we see him take that first deep breath, after an hour of shallow ones. When we can see the tension leave his face and body. When we see his core, true self, start to emerge again. When words return to him. When he calmly asks for a drink of water. When he looks right at us and asks us to please help him put his shoes back on. We don’t hold onto when he was screaming at us, telling us how much he hates us. Instead, our radar is on the moment when he is calm again, and happily asks us if we want to join him for ice cream.

Please know that. We love what we do. We don’t judge. We adore your children. We are honored that you have entrusted them to us.

Wed
02 ^nd

Conversation

Posted by Jen — 1 Comment

“I love gymnastics,” she says, out of nowhere. “I want to try it again, I quit last year. It was too late at night.”

“I get that,” I say. “I get tired on school nights too. What is your favorite part of gymnastics?”

“The exercise,” she replies. I nod my head. “You like to be moving?”

“I want a flat stomach,” she responds. My heart skips a beat. No no no no. Please, no.

Tread carefully, I remind myself. “Hmmm” is all I can manage. She continues, lifting up her shirt an inch and pinching her stomach. “I do not want this icky fat on me,” she declares.

I think. She’s a wonderful, insightful, unique, verbal, chatty girl. She’s also 15. And a teenage girl. And on the spectrum.

I choose empathy. Even if my words are not processed, I know the feeling will be.

“I get that,” I say. She looks at me. “But you know what? It doesn’t matter. It doesn’t matter if there is fat on your stomach, or anywhere else.”

She is listening.

I continue. “I sometimes have thoughts like that. Many people do. But I remind myself… ”

She interjects, “It does not matter! You are beautiful! It is what is on the inside that matters!”

I know it’s a script. I don’t care. The fact that those are the words she is pulling, in this moment, means that hope and belief and self love are all what she is trying to convey, and convince herself of.

“YES” I answer. And she moves on to a different topic, done with this conversation.

It’s a start.

Tue
24 ^th

To the mom I met last weekend

Posted by Jen — 5 Comments

Hi. I’m so glad that Charlie* is coming to our summer program this year. I’m so glad you brought him to the meet and greet a few days ago.

I know you were worried. When I sat down next to you, while Charlie was with his summer group and summer counselors, you gave me a tense smile and said, “I’m so embarrassed. He keeps saying bathroom words.” You went on to explain how awful he was behaving. That no other kids were saying poop or fart in response to questions. That during the year he had worked with his speech-language therapist who had provided him with social stories that were effective, and the bathroom talk had been extinguished. That you were petrified that it had returned.

When I gave you a smile and told you that this was SO common, that I had seen it a million times, I wasn’t trying to make light of your fears. I really was telling the truth. When I told you that potty talk doesn’t make any of us bat an eye, I was telling the truth. When I told you that it makes perfect sense that he’d resort to potty talk today, I was telling the truth. Charlie is 5 years old. Five year olds love potty talk. It’s silly and goofy and it’s a fun way for them to make each other laugh and connect. Charlie also happens to have an autism spectrum diagnosis. He has language, but anxiety and fear prevail over language. He was put into a new environment, with new kids, and new staff, for the first time all year. That would make ME nervous! So Charlie turned to the words that are easy for him, that he knows, that he could easily access. And those happened to be “poop” and “fart.” I promise you, this is the truth. I promise you, not a single one of us ever thought, or even will think, that he is “poorly behaved,” “trouble-causing,” or “disrespectful.”

When you left and told me, “Charlie said he loves this place!” I was thrilled. That was our goal for the meet-and-greet. To get each and every kiddo feeling like, yes, this is a place they will be safe and have fun this summer. You then followed it up with your disclaimer and fears, “But, he didn’t listen to a word anyone said.” My reply: “But he sat with the other kids. He kept his body in the group. He kept his body safe. He shared some laughs and some words. So from our point of view? It was a huge success.”

I was telling the truth.

We will work with Charlie all summer. We will help him find and access his language. We will teach him the “expected” and “unexpected” times to use potty talk. We will provide him with words and visuals to help him share his thoughts even if verbal expression isn’t accessible.

We are thrilled Charlie is here. We are thrilled you are here. You are in the right place.

I am telling you the truth.

*not his real name

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