Monday, November 21, 2016

Autistic Insights on Meltdowns, Aggression, and Self-Injury

Brent White and Lindsey Anderson
Ala Costa Transition Program

A Presentation at Support For Families in San Francisco, California, which also included Dr. Clarissa Kripke's presentation Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices.

Lindsey Anderson, Brent White, and Nora
[image: white woman with long straight brown hair,
in front of a white man with a black cap, glasses,
and a silver beard, holding a small white dog]
Brent: The Ala Costa Transition Program, which serves students ages 18-22 with developmental disabilities, is 100% community based. We understand that when “behaviors” happen in public, sometimes really big ones, it adds a whole different layer. We want to be really careful in how we think about those scenarios. So we came up with guidelines that we use in our program, and that hopefully you can think about while an autistic person is overwhelmed and having trouble coping.

It’s important to remember that when someone is struggling, they are not being “bad” or trying to do something to you personally -- even though it can feel like that, especially if they’re screaming at you or making you angry.

By the time “behavior” happens, it’s too late to stop or redirect. So you want to be kind to the person who’s having trouble, even if it’s hard, and can be super scary for you. Be empathetic: it’s about them. Even if it happens in the community, and even if you have all these community members telling you what to do, and saying “that shouldn’t be happening.”

When someone is having a meltdown, they’re probably looking for a place to be safe, so they can stop feeling the way they’re feeling. As parents or staff, we want to get everyone else away. If there’s a crowd, we say, “Please go away, let us deal with it.” So if there’s a way for the person having a meltdown to choose a safe space, let them choose that.

It’s really hard on your own body, witnessing a person experiencing that much trauma. Especially if you’re in public, like in a grocery store or a Costco. That anxiety is hard on your body, and making decisions based on your anxiety can make things worse. So, if community members are gathering around and asking questions, that’s their problem. Your focus should be on the person in trouble.

While meltdowns are happening, that’s not the time to ask someone “what’s wrong with you,” chastise them, or ask them questions — that’s all useless. Again, be as empathetic as possible. Keep yourself as quiet as possible. Don’t shame them for their behavior. You can ask them questions afterwards. You can also praise them for how they emerged, and say things like “I love how you stopped and were able to get yourself away.”

You can also say, “When you’re feeling that way next time, here are some things that we can try….”

Lindsey: It’s just miserable for the person having the meltdown. When I’m anxious, it feels really terrible. And it feels terrible for the person, such as a parent, witnessing it too. So it’s really important to have an abundance of compassion for yourself, to take a big deep breath -- and to also know that the person experiencing the meltdown is feeling one hundredfold worse than you do at that moment. If you can be compassionate and loving towards yourself, then you can extend it to that person who needs your support.

Brent: If you’re in that situation, the more you try to be mindful, the more you’ll have a chance of handling the situation well. But let me also tell you a secret: Neurodivergent and other autistic people, in my experience, are really great at reading non-verbal cues -- so they will feed off your anxiety. That’s why it’s important to be mindful; to be quiet, calm, and kind. Even if you’re not saying anything, if you’re anxious, they’re feeling it.

Lindsey: We autistic people feel what you’re feeling, even if you’re not giving us those signals with your voice or face. We sense whatever you’re feeling in your heart and chest. (This is different from not noticing that people are picking up on us, and asking them out for dates!)

Brent: (Laughs) That is a completely different thing.

I’ve worked in this field for fifteen years. And there are a lot of little things that parents might not understand. We have participants who flap, and verbally stim, and walk on their toes -- and for some reason some people think of those things as “behaviors” -- and they are not. There’s nothing wrong with them -- that’s how they communicate, that’s how they interact with the world.

Lindsey: What a person is doing doesn’t have to make sense for the person not experiencing it. For instance, Brent is not using a microphone right now, but I am using one, and that’s OK. People need to be able to make their own choices, even if other people don’t understand or share their reasons for making them.

Brent: Actions that neurodivergent people engage in that other people consider odd aren’t always actually problematic. Someone “bouncing off the walls” may actually be engaging with their environment fully -- and that can be really beautiful.

Self-determination is important. People being able to choose their own coping strategies is really important, really empowering. They need to be able to make their own decisions about what they’re doing, feel like they have some control when they’re otherwise out of control.

But we will make suggestions, like “Do you want to go outside, do you want a drink of water, do you want to listen to some music?” We don't suggest them that quickly of course, but we’ll give lots and lots of choices. That way, when someone needs support, we can say “what choices do you have?” Even when we’ve had people having meltdowns that look really bad, they’re actually choosing their own safe space and way to do it. And after a few times, they really feel like they have agency and control. And that’s what’s most important.
 
Really, everyone here has probably had a meltdown of some sort, due to grief or just being a puddle -- it’s a terrible, terrible feeling, and it’s one I personally live in fear of. It’s really shameful to feel like you’re out of control. Giving control and agency can help, and knowing that lets me personally be in the world, instead of just wanting to hide.

Lindsey: Using these kinds of tools and approaches can reduce the amount of shame your child or the person you’re supporting experiences in the world. Shame plays a huge role in the way I personally experience my emotions, it’s something I’m overcoming -- I’m unlearning a lot of things that I learned as a child from society and from my parents and from the people around me. So if you can nip that in the bud, it can heal the community you’re around and it can also set your child up for success in the future.

Brent: When I was a kid and feeling overwhelmed, it was like being in the middle of a tornado of feelings. I would feel shitty, but I wouldn’t know why. I would go to my mom and ask for help -- and she would react by hitting me or shaming me.

Autistic kids sometimes need help understanding things about themselves and in making preferred choices -- I needed someone to ask me if I was hungry, or if I needed to go outside, and to recognize the things that usually upset me.

My mom didn’t recognize that I needed to eat. She thought I was having a temper tantrum. And that happened a lot when I was a kid because I simply didn’t have the context to put feelings to words to language and to be able to say to someone, “I’m hungry.” (And sometimes, I still don’t.) Autistic kids don’t always have the ability to match feelings or needs to language. Asking them questions can help.

It’s important to legitimize the feelings of autistic kids. There is nothing that feels as bad or as frustrating as having a thought or a feeling and not being able to express it. It may be the hardest thing about being neurodivergent. It’s a common problem.

Making friends can be really hard. It’s really hard for most autistic people. If kids are not responding to the friendship overtures of an autistic child, you can help the child understand that it may because of communication difficulties, and that’s not their fault. Focus on not shaming. And give them some time to respond.

And also make it sure that this is just something that’s happening, and that’s part of being aware of one’s disability: If your kids are autistic, tell them they’re autistic! There shouldn’t be any shame about that, either -- in fact, there’s power and knowledge in it, in knowing that it’s not your fault. That is one thing I wished my parents had told me.

These are some of the guidelines Ala Costa’s adult Programs use for working with Neurodivergent youth in the community

Brent: ACAT Ala Costa is a 3:1 program for young adults transitioning out of high school and into the community, which is all full of chaos -- it’s beautiful.

Lindsey: 3:1 means three students to one teacher.

Brent: Another thing to consider when working with people, or your kids, is the concept of “slowness.” Understand that Neurodivergent people process information differently and that processing time is different. So when you ask a question, wait as long as you possibly can for an answer -- until you’re bursting -- and then wait a little longer.

If you are not neurodivergent, the questions you are asking may make sense to you, but may make no sense to the neurodivergent person. I get that a lot. People ask me questions, and I’ll think about it a long time, I might start to panic. So you want to wait, and be patient. A really beautiful way to be in the world, with a disabled person, is to be super patient -- that’s so respectful.

Neurodivergent people process information differently, and they also process things that other people aren’t processing. If people noticed the sound of the lights in this [conference] room the way I noticed them, they wouldn’t have these lights at all. I am also hearing the sounds of the environmental system, probably a lot of other people in the room are not.

One of the biggest things: Presume Competence. Even if someone is doing something differently than you do, that doesn’t mean they’re doing it wrong. Everyone has their own way of doing things. The way Neurodivergent people get from A to B in the world is a lot different than the way neurotypical (NT) people do it. We don’t use the same systems and benchmarks. And it often results in amazing ways to adapt.

When I was growing up, I felt like neurotypical kids had all read the same script, and all knew what they were doing -- and I just didn’t understand any of it! I had to figure it all out in my own unique way; and not just one or two things, but every single aspect of my life. It’s a million little tiny things that you do in your life. Maybe if you’re neurotypical and you’ve read the script and you’ve figured it out, those things don’t matter to you, but probably for your kids, a lot of that stuff is not going to make sense.

When you’re talking about goals, and where people should be, think about how they’re adapting to the world, and really appreciate how they’re adapting to the world. And if you want to praise them for something, you can say “the way that you’re doing this is not the way I would do it -- but it’s amazing that you did it that way.”

It is really important not to say that results that are correct for that person are incorrect if they actually make sense! It’s especially important to presume competence in this way when it comes to testing, when the testers expect things to be done a certain way.

Lindsey: We also live in a world that doesn’t really like chaos because chaos means pain, and chaos means “too much, too much change.” But sometimes the way our brains work require chaos. We have to have that chaos -- and what may be chaos to other people are often beautiful and meaningful to us. And I think it can also be beautiful and meaningful to other people too! But we like to stick to rules in our society. And when we break those rules, we’re not trying to disrupt the system -- we’re trying to survive a system we’ve been put in that doesn’t give us the supports we need, so we have to create our own systems. No one gave anything to us; we had to figure it out ourselves. So respecting that process -- supporting and encouraging and appreciating those systems is so, so important.

Which leads us into the next topic: It’s OK to be different. I encourage it, I love it. Let that freak flag fly high! It’s the responsibility of rest of the world to adapt and deal with our differences -- we adapt to the world each day, and I don’t think it is too much to ask the world to meet us halfway.

If your child is stimming or even having a meltdown in public, and strangers are scowling at you, forget them. They are unimportant. This is our “normal.” We need to be positive in that way. And it’s not just the strangers; it can be grandparents, it can be family members: They want you to get that kid “under control” or “stop that screaming” or “stop being a brat!” People see differences in such negative terms, but we have the opportunity every day to reflect the joy of difference.

Brent: One of my adult clients laid down on the floor right in the middle of the tomato section at the Berkeley Bowl grocery store, because he needed a break. He was of course in the way of Berkeley people getting to their organic tomatoes! Our staff stood next to him so that no one tripped over him. They weren’t going to move him or touch him. The staff let the client do what he needed to do to feel safe. The shoppers got to experience that and interact with a situation. They got to be uncomfortable for 15 minutes and see that the world didn’t come to an end.

Shannon (moderator): My son loves the Monterey Bay Aquarium, and I consider it to be one of the most accommodating places in our area. One of his favorite things to do is to lie down on the floor and look up at the anchovies swirling around in their tank.


[video: close up of a school of anchovies
swimming in a cylindrical tank.]

I used get nervous, because typically in situations like that people will approach me in a concerned but patronizing way, and ask if we need help. But the Aquarium staff — they tend to approach and ask what’s going on. And when I told them, “He loves being able to do this. He’s so happy!,” their response was, “Well, we love it when our guests are happy.” And I was so shocked and grateful, and could only squeak out a “thank you!”

The more we’re out and just being ourselves and not hurting anybody, I think the more we can be comfortable being out and about.

Brent: I think that’s a great thing parents and caretakers can do too. It’s that idea of positive regard and how we reflect back to the world what’s going on. So if a kid’s lying down in the middle of the aquarium, and if his mom is beaming because that’s a beautiful thing, that makes such a difference.

One of the most controversial parts of our program is our belief that Neurodivergent people have a right to take risks! I’m not talking about dangerous risks. I’m talking about allowing people to learn by failing, and how important that is. Because that’s one way people learn, by failing. We all learn by failing. We all have the right to take risks and the right to fail. We all get to screw up; autistic people and their parents too.

It’s nonsense that you should know exactly what to do when your kid has a meltdown in Costco or the bank. You have a right to be confused, and do things the wrong way. That’s how we learn. This is especially important for Neurodivergent people who often have to find their own way through the world. Try, fail, then try again and again, until we figure it out.

In our adult programs, the right to fail is an important ethical component -- for me, for the staff, and for the participants. It also ties in with self-determination and self-advocacy. We can’t do anything unless we believe we can do it!

There is too much learned helplessness in Special Ed environments. You can’t learn to do something for yourself if no one ever lets you do that. Which means that others need to stand back, to let you do that. When people are allowed to fail and learn from their failures, it builds confidence. It builds belief in oneself. It’s not enough for anyone else to say, “Yes, I believe you can do it.”

Lindsey: Historically, disabled people are too often taught that they’re fragile and that they aren’t allowed to take risks because something might happen to them. So they never have the opportunity to learn from mistakes. With disabled people, it’s important to let us screw up. Let us go to the grocery store, try to buy something without money, and be told by the cashier that we can have the item because we need more money -- instead of doing it for us or giving it to us because we’re disabled.

I think about this a lot with my very visibly disabled clients and program participants. We go to the store nearly every day, and buy lunch as part of the program. Sometimes we’ll have a participant who really wants a piece of delicious pizza and a soda but they can only afford the pizza. So what happens then? That’s a time when they have to make the decision to buy something they can afford, because that lets us learn about money. That lets us learn that if we can’t get what we want, then we have to figure out something else. Because what are they doing to do when they are dealing with people besides parents and caregivers?

Brent: Independence means different things for different people, and I prefer to frame it as “less dependent.” Anyone can create situations and spaces where people can be less dependent. And for some people that might mean spending three minutes alone, for others that might mean living on their own.

Inclusion

Brent: Inclusion is usually constructed around the idea of the disabled person presenting as “normal” as possible. But I think inclusion is a two-way street, which means the neurotypical world needs to meet the neurodivergent world halfway. The world belongs to disabled people too, but we’re often excluded from it. We always have to force our way into it.

Inclusion should not mean invisibility. The historical narrative of disability says that we’re broken or diseased -- that there’s something wrong with us. People with intellectual or developmental disabilities are always being separated, whether by institutionalization or isolation. The only way to break that down is by all of us educating ourselves to counter that narrative.

I really want to see a world where when your kids get older, they won’t have to struggle to fit in the way I did. I want it to be just a little bit easier for them, and then a little bit easier for the next generation too.

Lindsey: Brent and I didn’t have people talking about this when we were younger. So it is really healing for us and really important to have this platform. But it’s also really important to have a wonderful audience like we do today -- one that is willing to listen, and willing to take this message back to their home, office, job, school and implement what we’re talking about so we don’t have to go through the same pain, generation after generation, of Neurodivergent people.

In terms of our own experiences as young people: Growing up, I always knew I was different, but I was never given an autism diagnosis even though people were always talking about my behaviors. As wonderful and loving as my parents were, everyone always thought I was throwing tantrums, that I was just angry, overly sensitive, and overly emotional.

Something I would have told them if I could have, and that I’m telling you now: It’s important to pay attention to what is going on in that moment of having a meltdown -- when we’re feeling really uncomfortable. It’s important to have compassion in that moment -- both for your child when they’re not feeling well, and for yourself. I’m not overly sensitive, I’m hypersensitive -- I was taking on both my own emotions and the emotions of everyone else in the room, and was incredibly aware of the way people acted around me because none of them acted like me. No one stimmed, or threw their hair around, or jumped around like I did -- so I modeled what everyone was doing around me, and I learned to keep all my really uncomfortable, painful feelings inside. For twenty-one years.

Now I have a community. I even learned I was autistic by talking with other autistic people. That self-knowledge has helped me understand coping mechanisms. I don’t have awful meltdowns anymore. And my anxious feelings, well they don’t really happen unless I have to speak in front of people!

Talking about how I feel is a huge deal, and that’s why I talk about my experience -- so people don’t have to go through what I went through. As an adult I am way more autistic than I’ve ever been, but also happier than I’ve ever been -- because I understand myself and have the supports and coping methods I need. Knowing my access and support needs allow me to support others in my community.

Brent: My experience is really similar. I started going to therapy in my 40s, and when they asked me to describe my childhood, I said I was always “scared,” because I didn’t understand what was going on around me.

That’s the thing about being autistic and undiagnosed -- it’s scary, because you know you’re different, but you don’t know why. What was really debilitating was being told everything I thought and felt was wrong. It’s a really scary feeling. It’s like you don’t exist. And I didn’t understand how I existed as a human being, because I wasn’t like anyone else. I didn’t relate to anyone, because there was no one who was like me. Sometimes I felt like I was either invisible or on a ten-second delay from the rest of the world. Especially having thoughts and feelings that I couldn’t express because I don’t think in words. The world is a connected and beautiful place that was in the front of my vision the whole time, yet I couldn’t communicate that.

So I went through a lot of therapy and got a lot of misdiagnoses but wasn’t OK until I discovered the autism community.

Now I have a community, I know people who are like me. It took me fifty-something years to get here, but I’m here. And the reason I come out here and do talks like this that make me uncomfortable is because I want that for other people: I don’t want anyone to spend their life feeling confused and depressed, invisible and misunderstood, because they can’t connect with people. I connect with people really well, it turns out -- with neurodiverse people. Sitting in a room with other disabled people is a really great experience. It is happiness.

Lindsey: You need to find your community. If you can’t find someone who lives next to you, then go online. That doesn’t mean you have to like everybody, or listen to all of them, or that you’ll agree with everything everyone says -- but it’s out there. Keep searching. Because community is the most powerful thing you’ll find. It is more powerful than any education or anything else that will happen with your child. Community is key: for them and for you.

Shannon: To follow up on Lindsey’s emphasis on community: there are some really great spaces online, like the Thinking Person’s Guide to Autism Facebook Page, which has autistic people, parents, and professionals. It’s an information sharing community where you can meet people very much like yourselves. It's at: www.facebook.com/thinkingpersonsguidetoautism.

Also: something we come across a lot at Thinking Person’s Guide to Autism is parents telling autistic people like Brent and Lindsey that their personal experience as someone who can speak, and describe what they’re feeling, is different from their own child who can’t communicate the same way. But I am telling you that what Lindsey and Brent are describing is probably what your child is like, even if they’re not able to communicate that in a way that makes sense to you.

My own autistic son is a teenager, and our life together hase become so, so much happier and easier due to learning from autistic people what being autistic is like. Because if my son is not happy, then I am not happy -- and I’m sure that’s an experience shared by many people in this room. So understanding what Brent and Lindsey have been saying, about what it’s like to be autistic and what makes my son happy; the things that our other speaker Dr. Clarissa Kripke said about what it’s like to have serious medical conditions that are not identified, what it’s like to have sensory sensitivities in an sensory-unfriendly world when you can’t filter it on your own, all that.

So I’d urge caution in insisting that autistic people who can express their thoughts and feelings in a more typical fashion are not like your child -- because truly, they are like your child, but they have different abilities.

Lindsey and Brent can’t speak for your child because they are individuals. Trust me, there is as much personality difference in the autistic community as there is in any other community: Some people are great, some people are friendly and helpful, and happy to answer your questions, and … some people are not, and might tell you that you’re a jerk just by virtue of being a parent. So you need to seek out people and communities and spaces that will support you, and it is completely fine to reject a space in which you do not feel supported.

The shame that Brent and Lindsey talked about, you should not let any of that permeate your approach to parenting your children. You should try to find people who are trying to understand you, your needs, and who embody what Lindsey said about having compassion. We are looking at providing the best quality of life possible for the people we care about, the people that we work for, and ourselves. We have rights, and we should be able to exist in this world as ourselves without being ashamed of who we are.

Post-Talk Q&A

Parent Q: How do we support our children when they are having a public meltdown?

Autistic Q: How can we deal in the moment, like if we are having a meltdown in a medical office, and the response is to threaten to call security?

Lindsey: When we are having a hard time, it’s not our job to educate other people in that moment when we have so many other things going on. Maybe after the fact, you can come up with strategies for next time — or if it’s your child, talk to them about strategies they can use next time like a gesture for “please go away,” or “I don’t need help.” But interference in that moment is the last thing that you want because an autistic person is usually in the middle of processing what’s going on. Nothing’s probably going to stop it, and nothing’s going to make it pretty.

Brent: If I’m in charge of a situation in which other people might be unsafe, I am very strict about chasing those people off, to ensure my person’s privacy. I don’t care if it’s in the middle of Costco or a drugstore. That person deserves to have their privacy respected.

Lindsey: It’s not your job to educate people! Parent responsibilities are to yourself and to your child — not to other people in that moment.

Shannon: My son has recently learned to say “Stop, please.” And he uses it appropriately. It took a while for him to learn it, a lot of repetition, because he wasn’t ready before then. So just because teaching certain self-advocacy skills might not sink in immediately, that doesn’t mean they won’t sink in eventually. And even if they don’t use the skills, they do get internalized, and your kids will know you’re trying to help them, that you have their back.

Audience Q: What are some coping skills you recommend?

Lindsey. My coping strategies evolve every day. I use
  • Meditation
  • Having a quiet space.
  • Working out every day, weighted resistance helps connect my brain to my body, and process -- in general, and so I can be aware of and process energy from interactions
  • Being aware of triggers, and topics/encounters that will be energy sinks. I can’t avoid the outside world.
  • Allowing myself to listen to me! I am the expert of my body. No one is going to write the handbook for me but me
Brent and Lindsey: We also have service support dogs. Lindsey’s has been trained to provide compression as needed.

Audience Q: What causes meltdowns?

Lindsey: Sometimes meltdowns and self-injurious behaviors (SIBs) are not the terrible things they seem to be. Sometimes people just need to cry and be super upset, and that’s a way of processing. I actually usually feel better afterward. That should be OK. I don’t need to analyze why I’m doing it.

Brent: I experienced cortisol as electric currents under my skin, and needing to release it. This could  lead to serious SIBs, and it looked horrible and painful, but it was actually therapeutic.

Dr. Kripke: Data shows that mindfulness-based stress reduction techniques work for both autistic people and people with intellectual disability. Flight-or-fight meltdowns are often based on that cortisol hormone surge. People can learn techniques so that when you get that surge, and it’s not reinforced, meltdown can only last 10 - 90 seconds, instead of three hours. The goal is not to prevent the surge, but learn techniques for not reinforcing and perpetuating the surges: to focus on de-escalation, rather than escalation.

Audience Q: I wanted to ask about non-physical self-injury -- specifically for girls and women, as we’re socialized to be seen and not heard, to not make waves, to not disrupt. When we are doing things that are considered wrong -- or don’t feel right -- for me, I was so afraid for anyone to see that I was self-injurious that it all went internal. So I think that a lot of girls and women -- but also men -- injure themselves internally, and I wanted to ask if that’s part of self-injury. Because all of my meltdowns tended to come from internal stuff, not external stuff.

Brent: We talked a lot about shaming and the result terrible results of shaming, when it happens over and over again. It builds up in your head. It feels like everything you do is “wrong,” It leaves deep psychic scars. I don’t know any autistic adults who don’t feel that way.

Lindsey: I never knew that I was autistic, because I’m a woman and I’m expected to have certain characteristics I was always very aware of the way other people were acting and if “that’s not the way girls act” -- I internalized all of that. If I wasn’t acting out (having a physical meltdown), something I would never let anyone besides my family see because I was so incredibly self-conscious, then I would absolutely go internal with it. I’m still dealing with that and realizing and un-learning all of the self-harm that I would internalize from living in a world that doesn’t like the way I am naturally.