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Making Sense(ory) of the World

 By Brian R. King, LCSW
Autism Asperger’s Digest  March/April 2014

It is a true gift to feel at home in your own body. For those of us with sensory integration issues and autism spectrum disorder, it is a rare gift and one that must often be fought for every moment of every day.

Each human being comes into this world with senses through which to experience and navigate life. He’s fortunate if those senses are working together to create a cohesive picture of the world. However, there are an increasing number of children and a myriad of adults who know all too well the experience of trying to make sense of a world through senses that seem to work independently of each other.

Some senses want more input, while for the others even a little is a little too much. The challenge becomes finding the balance through which we can experience even a moment of calm and focus—so that we can participate in the flow of life instead of always feeling like we’re swimming upstream. Fortunately, there are ways we can achieve this, together.

It’s important to remember that a person’s difficulty handling an overwhelming environment isn’t a matter of motivation or endurance. Our senses work on autopilot. So telling someone to try harder is absurd. Take sweating for example. If someone is sweating a lot, does it make sense to tell him to stop it? Would you say, “Come on, cool down. You’re not trying hard enough.” It doesn’t make sense, does it? But that’s what many people expect of those with sensory regulation issues.

Increase Self-Awareness

If a child needs to sit still and he’s very kinesthetic, you can use a weighted vest. One problem with those is the premise that any pressure will do. Weighted vests don’t automatically get heavier as a child gets more stressed. So what options do we have?

It begins with self-awareness. Any person oblivious to his own needs can’t begin to seek out the strategies to meet them. I’ll explain this through an experience with my then five-year-old son Connor. Please pay close attention to the wording in this example because the wording is everything. We’re talking now about how to help increase the self-awareness of a child on the spectrum about what his sensory needs are in terms of how to self-regulate.

Five Types of Hugs

Connor was a banger and a crasher and needed a lot of proprioceptive (the experience of pressure on the body that helps the brain determine the position of one’s body in space) input to regulate his nervous system. One of the best ways for him to get this was through hugging, but, like a weighted vest, any old hug won’t do. Through talking with him in a strategic way, we established five different hugs depending on what his sensory needs were, and he’d tell us which one he needed.

He used to get his hugs ambush style. He’d run up to me or anyone else and hug their leg as hard as he could—sometimes knocking the person off balance. I used to scold him for this.

One day I asked him why he kept doing that. With a pouty lip he said, “I want a hug.” So I kneeled on one leg and gave him a hug and he hugged me tightly. I asked him if he felt better. He said, “Yes,” and ran off to play. Knowing what I know about the spectrum, I realized he needed deep pressure, and between being five and being on the spectrum, he didn’t know how to effectively get what he needed, so he just did it. So I began working to teach him the language and reciprocity behind getting a hug when he needs it. I teach parents how to have this conversation with their children to achieve the same outcome.

First, you need the right mindset. When your child does something outside the norm for you, it is critical that you understand that its purpose is to meet a need. The moment you judge it as inappropriate, you want to change it when what you really need to do is understand it. Be teachable and seek to understand the need your child is trying to meet.

The first question you must ask yourself when you experience a child doing something unique is, “Why that?” Of all the things the child could be doing right now, Why that? What problem is this child trying to solve for himself?

“Why that?” is how my wife Cathy and I began the exploration of helping Connor discover his five types of hugs. The outcomes we achieved were that he was able to communicate the hug he needed, demonstrate it, and experience how these skills will generalize. And generalization is the truest measure of the value of any skill.

Cathy initiated the process when Connor would come home from preschool. He’d get off the school bus and she’d be waiting for him at the door. The moment he reached her, he’d melt down and begin crying because he was so overloaded. She would sit on the floor next to him and say, “Okay, you seem like you’re not very happy. Can you tell me what’s wrong?” He’d say, “I don’t know.” She’d ask, “Okay, are you hurt?” “No,” replied Connor. “Do you think you’re sad?” “Yes.” “Okay, do you know why you’re sad?” “No.” “Well, is there something that I could do that might make you feel better?” “Yes.” “Okay, can you tell me?” “I need a hug,” answered Connor.

So Cathy would hug him and then ask, “Does that work?” “No, I’m still sad.” “Okay, do we need to do something different?” “Yes.” “What do you think you need?” “Tighter.” Over time by asking him specifically how he needed the hug, we developed a hug system so he has the right hug for the job, depending on how he’s feeling.

Now when he comes home, he’ll say he wants a Connor hug, which means he’s had a good day and he just wants a general hug to give him some quick pressure to calm down a little. Then he’s off and running. We also have the bear hug, which is a tighter, slightly longer Connor hug. He’ll say, “I’m done” when he’s had enough.

The dinosaur hug is for very deep pressure. Then we’ve got the fishy hug, where you pick him up, hold him tightly, and wiggle him so his legs swing. As he gets bigger, we’ll have to renegotiate that one to avoid injury! The fifth kind of hug Connor enjoys is the snuggle hug when you hold him while he sits on your lap and you both rock back and forth. It’s extremely calming and comforting for him. This type of hug gives him proprioceptive and vestibular input when he’s had a hard day.

One of the keys to this process is asking your child, “Can you either tell me or show me what you need me to do?” A nonverbal child may need to show you. However, many children won’t have any awareness of their needs. What should you do then? You offer a hug and then ask for feedback while hugging him. Ask, “Do you need it tighter?” He may honestly respond, “I don’t know.” In that case, you ask if you can make it tighter to see if it helps. When he gives you the permission to do so, you do it, hold it a few seconds, and ask, “Does this feel better?” If the child says yes, you’re good to go. You’re using both language and action when helping your child discover the strategy. You’re saying it as you’re doing it so he associates the feeling with the language. Then you encourage him to use the same language when requesting it.

Plan Ahead for Self-Regulation

With so much sensory dysregulation, it’s a struggle to find balance. Every day of my life is an ongoing concentrated effort to stay regulated, calm, and focused. Ultimately what’s required is to keep my life simple, meticulous, and predictable. Why? Because if I know exactly what I’m going to be exposed to through the course of a day (as much as possible), I can plan to avoid things that will dysregulate me—and surround myself with things that will help me stay calm and focused.

Yes, spectrumites like order and predictability, but it’s not because we’re controlling, it’s because we’re protecting ourselves from dysregulation. We just want to create a world for ourselves that allows us to maintain some sense of stability. That’s why we construct the lives around us that we do.

Watch for Sensory Preferences

Well, how do you even know what input you need? As a parent you can watch your child and see what type of sensory input he seeks and what kind he avoids. I highly recommend having an occupational therapist who specializes in sensory integration evaluate your child.

You can also tell by studying your child’s special interests. Look at how he spends the majority of his time. How does he calm down? What are the activities he chooses to the exclusion of all others? Take the child who wants to sit quietly by himself and read all day long—is this a child looking for a tremendous amount of auditory input? Is this a child looking for a lot of kinesthetic input? This is a child engaging the world through his eyes.

I do much better with an audio book than I ever do with a written one. When I try to read, it’s frustrating and exhausting. My eyes don’t track well, so I’m always losing my place. I might get through a page or two and have to read the same paragraph several times before I comprehend anything. I listen to an audio book and absorb the information like a sponge.

My middle son Aidan is very kinesthetic. For the longest time we didn’t know what he was good at. Then one day he asked, “Can I learn to crack an egg? Can I help in the kitchen?” One year for Christmas we got him a chef’s hat, and he’d wear it every time he helped with the cooking. He wanted to be the one to flip the burgers. He wanted to help. He wanted to move.

Stretch into the Fullest Life

Aidan has taught me so much about how limiting a classroom can be and how liberating it can be to be educated outside the classroom in a world where he can engage according to his strengths instead of according to what is appropriate.

He found what he’s good at and wants to do it as often as possible because doing so gives him the experience of feeling effective and competent. Working in the kitchen teaches him he has something to offer the world. In the classroom he hears, “Try harder. You can do better.” In the kitchen, activities are more concrete, completion of a task is measurable—the dishwasher was full, now it is empty—ta-da. He finds a better balance between his needs and abilities when he’s allowed to experiment with different contexts. The school system doesn’t have that kind of flexibility, but life does.

It’s important to realize that teachers are typically limited in what they’re allowed to do in their classrooms. The curriculum is standardized instead of individualized and doesn’t lend itself easily to individual learning styles. I’ve met some magnificent teachers that aren’t allowed to be as creative as they’d like to be and are actually held back as much as their students by someone else’s rules. It is helpful to teach your child strategies such as self-administered joint compressions that he can administer while sitting at his desk. Any seasoned occupational therapist should be able to teach these to you and your child. These compressions can be effective for helping your child last longer before needing a break, reduce anxiety, and even improve focus.

We now have more information about living on the spectrum than ever, especially from spectrumites themselves. Together we can find the middle ground and co-create a world that moves at a pace that allows each of us to be at our best.

BIO
Brian R. King, LCSW, ADHD and ASD Life Coach, is a #1 best-selling author, 25-year cancer survivor, and an adult with dyslexia, ADHD, and Asperger’s. He’s also the father of three sons on the autism spectrum. Brian is known worldwide for his books and highly engaging presentations that teach the power of connection and collaboration.

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.

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