Autism in the Adult Recognizing Attempts at Regulation on the Autism Spectrum
Join Dr. Regan for the final episode of a four part series on regulation and dysregulation on the autism spectrum. This episode focuses on recognizing when an individual is attempting to regulate and using this information to partner toward the best outcome.
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Dr. Regan's Resources
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Book: Understanding Autistic Behaviors
Transcript of Episode
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This is Dr Theresa Regan.
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I'm a neuropsychologist and I specialize in understanding the way that the brain is related to emotions,
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behavior, cognition --
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thinking skills -- and also personality.
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I'm a certified autism specialist.
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I'm the director of an autism diagnostic clinic for adults in Illinois.
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And I'm the mother of a teen on the spectrum.
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This is our final episode of a four point series on regulation and dysegulation on the autism spectrum.
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In the first episode,
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we talked about what those words mean.
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So regulation has to do with the nervous system's ability to help us stay centered with alertness...
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whether we are able to wake up quickly and efficiently in the morning and are able to wind down to sleep in the evening ... that has to do with regulation of our alertness,
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Also regulation of attention...
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so sometimes we may feel spacey and inattentive and other times we may have too much hyper focus,
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too attentive to details that aren't really helping our situation.
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And also third,
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the regulation of emotions and behavior.
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And so this would be what we typically call fight, flight, or freeze modes when someone's overwhelmed and they may revert to an outburst or a meltdown,
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they may be an individual who has quieter struggle...
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So they may have flight reactions --
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like I'm leaving school,
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I can't come out of my room,
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I'm withdrawing.
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I'm hiding ... psychologically or physically.
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And some people have freeze reactions that ... I'm physically present,
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but I'm really shut down.
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I'm not psychologically present ... and it may even take the form of a dissociative episode like this person is shut down...
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They don't remember this conversation later.
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They're really just not able to be fully present.
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Another form of freeze reaction
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could be this expression of psychological stress through the physical body.
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So a person who's having what we call nonepileptic seizures.
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Those are seizures that are expressions of psychological struggle rather than based in electrical changes in the brain.
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That would be in this category.
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People who have feelings of physical pain in the context of emotional pain.
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People who have headaches or stomachaches etcetera.
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So we talked about ways to prevent dysregulation in the second episode.
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How to reduce those episodes of feeling uncentered.
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In the third episode,
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we talked about how to recover once dysregulation occurs, because it will ... it does for every human and there are just times in our life when we have more difficulties slipping into these dysregulated states.
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And then once that happens,
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we need to have strategies to recover.
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And that was our third topic.
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This is our fourth and final topic, and it's about how to recognize when the person you are with ... or how to recognize in yourself ... when you are attempting to regulate, because a lot of what we do as humans is say to ourselves,
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"Gosh,
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why is this person behaving that way?
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What does it mean?
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Why is my kid doing this?
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What's their intention?
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What does that mean?
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Or why did my spouse say this or didn't say this?
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What is the meaning behind that?"
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And it's really important if someone has a behavior and an attempt to regulate, that
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we understand that's what this behavior means.
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It's stemming, not from any personal issue between me and this person,
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It's stemming from an attempt to regulate and it's a sign ...it's revelation to the person and to those around him or her, that this is a person who's not feeling centered, and they're trying to get there and we all really want to support each individual's attempt to get to the center.
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And the first step is recognizing when someone is trying to do that and not interfering with their attempt to regulate unless we can offer them a better option for regulation and we'll talk about that in a little bit.
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One of the strategies that we talked about in previous episodes for regulating, whether that is alertness or attention or emotional calm,
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can have to do with the sensory system. The sensory inputs that people often use for adjusting that regulation state often has to do with pressure...
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So getting sensations of pressure, and that can be in the muscles or the joints.
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That's when we get what we call proprioceptive input.
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And that is why weighted blankets are calming for some people, that you have this pressure in the muscles and the nervous system gets these signals that it can kind of recenter, refocus, and get grounded.
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That's why yoga often is something that people gravitate toward for calming and centering,
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you often have these poses that you hold for a significant amount of time... enough that that pressure in the joint really gets settled in there.
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But there are a lot of other ways that people get pressure as well and we'll talk more about how to recognize that ... A lot of times the things people gravitate toward without really realizing why do I do this...
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There could be some sensory input part to it besides pressure...
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we're also going to be looking at movement.
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So that's when our brain receives vestibular input.
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So if person is riding their bike down through hills and down through neighborhoods,
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that person is getting vestibular input into their brain.
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And this kind of input is only present if the person is moving through space in the sense that they were in position one and now they're in position two... like they're down the street,
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that means the fluid in their ears starts to move and the brain gets this type of input...
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What doesn't give the brain vestibular movement input would be if the person is riding a stationary bike,
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they're moving their arms and legs and guess what ... they are getting proprioceptive input....
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that pressure in their muscles and their joints...
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but they're not moving through the neighborhood, down the hill,
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they're not getting that sense of movement into the brain, and that can be why a lot of people -- and you know who you are --
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will say, "I love running through the neighborhood,
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but I'm not going to run on a treadmill."
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You know,
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that is a clue that you are someone that needs that vestibular component,
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otherwise it just doesn't meet your sensory needs.
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Let me give some more examples of sensory strategies so that we recognize when someone around us may be using a sensory strategy. When kids or adults chew on things...
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pencils,
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shirts,
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chewing on gum,
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chewing on the tops or tabs of things.
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People put all kinds of things... like straws or tabs in their mouth.
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So our approach to correcting that is to say,
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"Hey,
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don't chew on your shirt,
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that's disgusting"...
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or don't chew on the pencil,
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it's not for chewing.
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Um but that kind of instruction doesn't really help.
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And the reason that in the long term the person kind of reverts back to that is it's probable that they actually are needing some pressure input through their jaw,
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through their uh the teeth into the jaw.
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And when you chew you get a lot of oral input and a lot of pressure input and that kind of input may be centering for that person.
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We even now ...at least in the United States, when there's an individualized educational plan for a student with attention problems or other difficulties in school,
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it may be written in their program that they're allowed to chew gum during class because it can help with focus and concentration and centering to have some pressure through the jaw and through the the teeth into the jaw.
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Another way that you might see people trying to get proprioceptive input would be that kid that is rolling on the ground, is crashing into people or things, and seems to like that.... um impact of hitting something or tackling in football,
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that kind of thing is going to give them pressure in their muscles and joints.
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Kds who like to run and jump into someone's lap or jump into a bear hug might really be wanting to get that pressure input ... for people who like to work on a laptop or on a project while they're laying on their stomach,
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you're getting a lot of pressure throughout your...
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the length of your body. When people are sitting and they're um kind of swinging their legs and they're hitting their ankles onto the the leg of the chair.
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Uh that gives pressure into the ankle joint there.
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People who like to go barefoot,
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you get a lot more proprioceptive input from the floor that way... by going barefoot rather than having a shoe on. Other people shuffle or drag their feet and they might be corrected by a parent and saying pick up your feet...
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the individual who sleeps with a ton of blankets or stuffed animals or really likes to be swaddled into something to sleep
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might be seeking pressure input. For people seeking vestibular input,
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you get that movement input ... and it may be riding the bike as I had talked about,
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It could be jumping on a trampoline (that also gives you pressure in your joints or when you flop on the bed of the trampoline).
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So you,
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you might be seeing that the person is getting both of those ...
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people who love roller coasters, who like to ride a motorcycle,
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Um,
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even just we can see that some people like to go for a ride in the car, and that clears their mind and it may be that there's some component of quiet that they find there,
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but they're also maybe just this predictable linear movement that might be calming.
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I want to tell you a story in particular.
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I saw a mother and her...
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I would say the son was probably about 10 years old, and it was one of those situations where unfortunately we were all in line to sign up for something that was related to a kids activity.
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And so there were parents in this long line and um,
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some parents had their kids with them and the line,
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I think it was raining outside and the interior of the office...
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it was just very winding and it was like you could fit one person in this little hallway and then it it just um meandered like a snake around this whole building and so you didn't see any windows and you were kind of...
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it really was loud and claustrophobic,
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it was very difficult for me to wait in that line.
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And the boy who was next to me,
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I could hear his mom talking to another mom in line ...and she was talking about how her boys loved to ride down this a really, really steep hill by their house, and she she just worries about them a bit because it's so steep and they do things like you know riding on their handlebars and ...they just are so driven to go down this hill that she hasn't been able to figure out a way to keep them from doing that.
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And in my mind I'm thinking "oh those are kids that need a lot of vestibular input,
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they need that ... they're trying to regulate and that's the way that they found that really serves that purpose.
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And interestingly, the next thing that happened was the boy next to me started shaking his head back, back, back, back, back, back, back and forth... vigorously and then he'd stop and then he'd shake,
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shake,
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shake,
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shake,
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shake,
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shake,
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shake his head and then he'd stop... and in my head, I thought "oh that's a great way for this kid to try to regulate in a hallway, because there's no way he's riding his bike down this hallway,"
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but by shaking his head,
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he's standing still,
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he's not making any noise and he's getting vestibular input because his head is shaking and that fluid in the ears is moving.
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And I thought,
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wow,
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that's a really great strategy for him.
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And the mom though,
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didn't realize what was happening, and she saw that as bad behavior and she said "stop that."
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And that's really the purpose of this episode... that if we don't understand,
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you know,
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here is someone who is struggling to stand still in a winding hallway,
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that's not moving,
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the line's not moving,
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people are talking,
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it's a very close space.
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Um and he's not able to move at all.
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So here he comes up with this great strategy,
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I'm sure unconsciously,
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it's not like he thought,
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how can I get movement input?
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But his body helped him out by saying,
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hey,
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do this.
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And mom said no,
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and so what we can really do, if we recognize what is this behavior...
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we could say,
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"oh that's a great strategy,
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Does that feel good to move your head like that" -- and we can help the person identifying themselves,
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what feels calming and what they need.
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Now,
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if she felt like that was too disruptive or if he were somehow banging his head into people,
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she very well could say something like,
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oh I really see that your body has that itch
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to move,
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it really needs to move,
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That's kind of hard to do in here.
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But would you like to go to the indoor pool after we're done?
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So you can get some of that movement that you really need... so that she's offering an alternative, and she's acknowledging that that actually serves a very important need for him,
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that he needs a lot of movement throughout the day and offering him more opportunity to do that again in a way that is safe and healthy and doesn't disrupt other people is a much better strategy than saying "don't do that."
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So once she understands that,
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they'll get along well with it, once we have a detective's hat on and we can say,
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wow,
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I wonder if X,
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y and Z.
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You know,
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I wonder if this behavior that you're showing really serves a function for you that's important.
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Then our solution can be to help the person realize what's happening, to support their attempts to regulate, and to create more opportunities for good regulation.
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It also breaks up this adversarial stance between people where if I'm correcting this person and saying,
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um,
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you know,
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pick your feet up,
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don't drag your feet, and don't shake your head, and don't talk.
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It gets into this very constant kind of adversarial situation where I've established a relationship with the person where I'm making sure they fit into a very small space, and they feel like their needs aren't getting met ... and she's asking, let's take the son who likes to move or needs movement,
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She's asking him to be still and be quiet.
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So she's asking him to regulate in the hallway.
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But she's asking him not to use regulation strategies.
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So that's where the problem is.
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He can either stay in the line and tolerate it by moving his head -- or he might then become more disruptive.
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Like then "I just can't stay in the line if I can't use the movement."
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I want to give you another example I witnessed of someone who is using vestibular input to regulate, and that was a preschooler who I observed the class was walking in their single file line behind the teacher. One of the students that had a lot of difficulty regulating
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-- I already knew from past observations --
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He was spinning while walking down in line.
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This kind of took a lot of coordination,
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but he was spinning in his own personal space,
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but while moving in a single file... line and again,
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that was something that he got reprimanded for.
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But it's a big revelation.
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It's a big clue.
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And if we can say,
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wow,
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that's a clue,
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maybe I should put this kid on a swing and and let him go before we go back into the classroom,
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then we can use that information.
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The person who wants to chew on everything.
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Maybe they can chew gum instead of chewing on pencils or ruining their shirts.
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Um maybe they can chew on a pencil topper ... so they make different things you can chew on that you could put on top of a pencil.
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Another strategy that sometimes works for kids to kind of give them another source of regulation is to have them do their homework or um you know,
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for an adult to do their projects, while sitting on an exercise ball because when you're doing that,
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you're getting more pressure into your seat and you have the opportunity to move and get that vestibular input as well.
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And sometimes that reduces the need for chewing because you're actually getting some pressure and movement and feel more centered.
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Another way that people tend to seek regulations...
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so we've talked about sensory inputs... and another way that people seek regulation is when they want to engage in their pleasurable activities.
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So for the individual on the spectrum,
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this might include something like sorting or patterning objects in their collections.
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So they may take time to sort and organize their colored pencils,
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they're playing cards,
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they may take out items to look at that
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... they have that are figurines that are ornaments, that are books in a collection with special covers signed by the author.
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It may be that this person is wanting to read their favorite book,
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watch their favorite tv show,
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eat their favorite meal ... and this is their attempt to regulate.
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So they're gonna like ... their pleasurable,
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go-to activities ... and they're also going to tend to like things that are familiar. And one of the biggest problems I encounter for families is when they misinterpret why the person is trying to grasp at these familiar and pleasurable things.
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So let's take the example of a teenage girl who comes home from school and she is exhausted,
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it's loud at school,
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she was previously homeschooled,
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so the high school environment is a big difference.
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And after school she gets off the bus,
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she comes in and she breaks the family rule about using mom's iPad.
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So she is allowed to use mom's ipad for a certain number of minutes a day,
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and it is not until she has done her homework that she's able to start with it.
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But she goes right in to get the iPad, and she goes to her closet and she sits in the dark with the iPad, um with the closet door closed and mom finds her in there and ... really,
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really gets upset! Like this...
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these kind of things have happened before.
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And mom really views her as being very defiant,
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even though she intellectually knows the rules. She interprets her sitting in the closet in the dark with the ipad as "I know I'm not supposed to be doing this and I'm doing it anyway"
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and that feels very, very intentionally willful and defiant to mom.
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And so she um takes a very hard stance about it...
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she starts to yell and get upset,
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she grabs the ipad and physically takes it out of her daughter's hands.
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the daughter loses it,
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she starts screaming,
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she slams doors,
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she takes one of the doors ... not completely off the hinge,
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but kind of breaks and bends one of the hinges, and it just turned into a very loud screaming and property breaking kind of episode.
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And so this was unfortunate because I think mom's interpretation of what was going on was inaccurate.
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In my working with this teen,
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this is a teen with straight A's in school,
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she is very rule-oriented in school,
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which makes her mom feel very upset that she breaks the rules at home ...
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but she's just exhausted by the time she gets home,
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it's a complex academic, sensory, and social environment ...and she has not been used to it,
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she's back in a public school environment, and even the bus drive there and the bus drive home,
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that adds another,
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you know,
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hour to the day of being around all these people ...and it's very overwhelming to her. When she gets overwhelmed,
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what she wants to do is look at pictures of animals, and she wants to look up animal facts and topics and charts, and she wants to learn about a new animal and see pictures of the animal.
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And so all she's doing on the ipad is looking up animal facts and pictures and this is soothing to her. I do get where mom's coming from, that there are some households where the rule is you get to do fun things after you do your homework,
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but this person's nervous system really needs the opportunity to regroup before doing something again.
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That's hard.
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So she is at a breaking point when she comes home and it's actually her attempt to regulate that has her take this thing ... and I know she's hiding with it.
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But I also think that being in a dark, quiet space is also something she's trying to do to regulate as well.
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I think the misunderstanding is that mom feels that the daughter on the spectrum could easily comply and behave in a different way.
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And my view is that she's leaning toward trying to get her neurologic needs met and it breaks the household rule
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which puts everybody in a very tough position.
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So mom is essentially saying "I want you to regulate without doing your pleasant activities."
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And she is saying "I can't regulate if that's taken away from me."
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So mom's um kind of coming in and barging into the the bedroom area and the closet area,
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turning the lights on, physically taking away the
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ipad and raising her voice ... really added to this very overwhelming situation for her ... and then when she couldn't use flight...
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here she had come home and used flight right?...
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I'm going to go to the closet.
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Um,
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and her favorite activity to prevent a meltdown.
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Once that was taken away from her,
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then she did have a meltdown, and it wasn't in defiance...
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it was just that what she was using to regulate was taken away.
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I think there would have been a much better outcome if the parent had seen her in the closet and thought,
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wow,
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it looks like you had a really rough day.
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Does it feel good to be in a dark cozy space and looking at your animals?
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And this could have started a real dialogue about what her system needs and what she notices.
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And it can introduce this concept that we can partner together to make sure that you're safe and healthy,
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but that your needs also get met because you are important and how you're doing is important.
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Um,
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and it sets up this collaboration and this partnership.
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Maybe there could be flexibility in the iPad rule and maybe they discussed that mom really does want her to feel centered after a hard day at work.
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And one option might be that mom and daughter could sit in a dark room together after school and look at animal facts for 30 minutes.
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If the reason that mom is restricting the ipad is that she thinks that she must be in the closet because she's looking at unapproved sites ... or maybe they could decide that having animal books from the library
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and the daughter could choose those books and go into an enclosed dark space and look at the books...
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if the reason for the rule is that mom doesn't want electronics all day in front of the daughter.
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Perhaps they could even have a tradition where after her alone time looking at animal facts and books,
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she could come out and tell mom some animal information.
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What was the most interesting that she learned... and this could also bring them together.
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once they have this,
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this better partnership and a tradition like 'this is how you unwind,
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this is how we connect'...
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And then once they figure out that that's helpful,
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they can talk about what else could we set up for you and give you access to that would help your system.
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You know,
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maybe this person needs a weighted blanket or a hammock or maybe laying in a bubble bath after school feels grounding, and they could come up with more ideas so that she has more access rather than less access to regulating activities.
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Consider an example of a husband who comes home from work
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to his wife and two preschool kids, and he walks straight to his home office,
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he shuts the door,
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he watches tv, plays games on his phone... and his kids had just thrown themselves at him when he came in the door only to be uh rejected and feel rejected.
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His wife is feeling like she's the one who needs to recharge because she's been with the kids all day.
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She hasn't seen another adult and she also feels ignored and rejected in her marriage.
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This again is a case of,
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um,
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an autistic adult who has given everything at work and comes in and actually does need some recentering time.
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And a discussion of this would probably be more fruitful
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than people talking about discontent with it, or telling him to do something different.
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Uh,
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it may be much more strategic to say "what do you need for these 30 or 40 minutes when you get home and then I'll tell you what I need and how can we get these things that we all need in the evening."
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Another strategy would be maybe he could start doing things at his office that would help him regulate during the day and then when he gets home,
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maybe he'd have a little bit more left.
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So maybe over a lunch break,
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he could eat his sandwich while he's walking around the block,
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Maybe he could listen to music when he's not in meetings.
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So this conscious working towards strategy helps us with the regulation piece.
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Then when he gets home,
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maybe he could go into his office and do some alone things for 30 minutes.
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And if wife needs alone time then or needs together time with him,
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they could pick maybe a restorative activity for the family... one that the kids never get to do.
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But they're going to pull this out in the evening because they really need something that's restorative and calm and so maybe they don't let let the kids watch movies or eat popcorn or eat anything in the living room.
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So maybe they could have a popcorn picnic or a pancake picnic in the living room while they put on a cartoon and they can turn off the lights.
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The kids might settle down in there,
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they can turn the volume down and then the parents could just cuddle on the couch and that level of activity
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may be something that he can regulate through and that actually is also restorative for them as a family.
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So once we recognize that the behavior is not intentionally defiant or manipulative at its core... and it doesn't represent a rejection of other people,
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we can problem solve and establish a partnership.
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And if you're the individual learning about yourself,
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you can say to the other person ... it looks like you have had a crazy day,
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I want to know what you need.
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Let me tell you what I think I need ... and so we can all grow in this self awareness and in these discussions about partnering.
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It's also important to note that flight can sometimes be an attempt to save regulation as well.
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And we talked about this a little bit.
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I just want to emphasize it before we end today ... that if someone leaves the room or if they shut down or if they stop the conversation and they are just going to leave ... one danger to chasing after them physically or psychologically,
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is that that flight may be the only thing
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saving them from melting down,
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that might be their strategy...
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flight might be their strategy.
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And so if it is,
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it often doesn't help to chase after the person and prevent them from flight.
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That's not to say that we don't want to work toward a more sustained level of communication.
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It's just that what doesn't seem to work -- and even though it's understandable ---is to go kind of in chase mode,
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like "I'm not going to let this go,
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this is important,
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we need to do this."
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Again,
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there are lots of caveats to all these,
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these are kind of general principles that I found helpful,
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but there may be times that you do block an activity or escape because of safety reasons.
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Um but most of the time when I see it happening,
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it's in frustration.
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Uh that ... I'm not gonna let you leave or I'm not gonna let you be defiant.
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Another approach that may work better in the flight mode issue is saying,
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I know that having this conversation is really tough for you,
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but it's also really important to me to communicate about this.
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And what would help you feel more centered and still be able to communicate.
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So some people may do better communicating about a sensitive topic when you're sitting in the dark so that they don't have to be face to face with you and they don't have to have eye contact.
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Another person may want to email about things for the same reason... that anything you can do to reduce the intensity of the conversation might make it more successful.
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So if they're overwhelmed enough that they want to leave,
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how can you reduce the intensity without reducing the core of what you want to accomplish?
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So maybe you can reduce the eye contact.
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Maybe you can reduce um you know turn down the lights or go in a quieter spot or schedule a time instead of having it spontaneous.
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So the bottom line summary of today's episode on recognizing when someone is attempting to regulate is that the way that we interpret someone's behavior ...
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you know, "what does this mean?"
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... it ends up impacting a lot, and if we think the behavior means someone's being disrespectful,
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manipulative, defiant, rejecting us ... then we are often going to respond in a way that's less effective than if we recognize that "oh this is a person who is dysregulated and trying to regulate.
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They're trying to get back.
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... this is a person who's overwhelmed ... then we can make better choices about how to respond in that situation to get the better outcome,
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the best outcome ... and that may include "wow it looks like you've had a rough day" or "it's really noisy in here isn't it?"
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Or "it seems like your system might need to move"... and really problem solving together.
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I hope this four part series on regulation has been helpful to you.
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It's certainly a topic that people often contact our clinic for ... for advice and education.
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Next time you join me it will be for the beginning of our next series, and I'm going to call it,
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Talking About Autism.
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This is a listener request, and I think it's a great one.
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It was sent in by several people,
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all wanting to really hear my input about how to talk about autism with each other.
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Hope you can join me then.