Therapist Neurodiversity Collective


8/23/2021, by Casey Bryn McCarthy, MS, CCC-SLP (she/ her/ hers)

Many speech-language pathologists do not think of sensory, emotional, or cognitive regulation as a part of their area of practice. In actuality, though, all communication originates from the need for regulation, and it is impossible to support a child’s communication skills or language development without understanding and supporting their regulation needs. While occupational and mental health therapists are also integral to identifying and accommodating regulation needs and building regulation skills, we as speech-language pathologists cannot afford not to integrate these concepts into our practices as well. 

The ability to regulate our internal states is the foundational skill that impacts every aspect of human behavior and development. Interoception, or the capacity to notice and identify internal sensations and states, enables the development of self-regulation, in which we take steps to seek out or remove particular stimuli within our environments in order to shift ourselves to the internal state needed to navigate those environments. The processes of interoception and regulation continue to develop throughout our lives and continue to be central to the ways in which we communicate with others. 

The primary regulatory challenge for a newborn infant is to move between six states of alertness smoothly. Newborns’ six alertness states are “deep sleep,” “light sleep” (also known as “REM sleep”), “drowsy,” “quiet alert,” “active alert” (also called “fussy”), and “crying.” In order to transition between these states, babies need to find ways to block out external stimuli in order to calm or sleep and take in external stimuli in order to reach an increased level of alertness. T. Berry Brazelton, M.D., of Harvard University, a pediatrician who served as a hugely influential figure in the field of pediatric medicine and the study of infant psychology and development, wrote in his guidebook, Touchpoints : The Essential Reference, that premature newborns and newborns who have experienced trauma (in the womb or during birth) have particularly under-developed regulatory systems and are often hypersensitive to stimulation. The handful of regulation strategies they may have in order to block out stimulation that is painful or stressful for them include arching their bodies, bringing their hands to their mouths, falling asleep, or crying and thrashing. Likewise, Dr. Stuart Shanker reported in his book Self-Reg: How to Help Your Child and You Break the Stress Cycle and Successfully Engage with Life that infants’ independent self-regulation strategies are primarily limited to “sucking, self-distraction, gaze aversion (looking away), and shutting down.” 

Shanker’s book focuses on the foundational concept in pediatric neurology that the brain development of young children, particularly as it relates to regulation, occurs almost entirely through the children’s interactions with caregivers (and later, peers). Young children are physiologically unable to achieve a regulated state without coregulation from caregivers. Through consistent, responsive caregiving that is focused on coregulation (in which caregivers provide emotional support and connection and increase or decrease stimulation to meet the children’s needs), children eventually develop an increased capacity to use independent self-regulation strategies. Children who do not receive coregulatory support cannot develop independent self-regulation skills, and are likely to remain extremely sensitive and highly reactive to external stressors, or to shut down in their presence because of a lack of other coping strategies. 

In later childhood, adolescence, and adulthood, we continue to use regulatory strategies to enable ourselves to shift between different internal and external states. Autism Level Up, a neurodiversity-affirming educational and therapy approach developed by Amy C. Laurent, PhD, OTR/L and Jâcqûelyn Fede, PhD, describes six energy states that individuals can use regulation strategies to move between. These states are “maxed out/ frenzied,” “amped up/ fidgety,” “focused/ purposeful,” “settled/ calm,” “sleepy/ still,” and “asleep.” Notably, these states are not drastically different from the alertness states of newborn infants- but, as we grow and develop and the demands and stressors within our environments change, our internal states present in different ways, and we use different strategies to move between them.

If we have received adequate coregulatory supports in early childhood, then as we get older, we will likely learn to use a variety of both self-regulation and coregulation strategies. Each of us as individuals find different kinds of activities, environments, and situations stressful, calming, or stimulating. We may seek out support from others to help ourselves to regulate in certain situations (e.g., seeking support from friends or family to navigate a break-up or talk through a stressful work situation) and prefer to use independent regulation strategies in other situations (e.g., lying in bed watching TV alone to decompress after sitting in traffic for hours, going for a solitary hike to think through a conflict with a friend).

Coregulation typically requires some form of communication with others to indicate to them how they can support us. In some contexts, we may also need to communicate with others in order to access self-regulation strategies. For example, we might need to let a roommate, partner, or child know that we need some time alone or we might need to ask others to provide us with something to help us to self-regulate (e.g., if ice cream helps us to regulate, we might need to talk to someone in order to order or purchase it). At other times, we may just need to be able to meet these needs quietly on our own.

The challenge here is that when we are dysregulated, our access to communication is reduced and may at times become severely impaired. It can be really difficult to communicate how we’d like our friends, partners, or family members to support us when we’re very upset- and we may be crying too hard to speak, might not be able to explain exactly what we mean, or might speak in a manner that unintentionally feels hurtful to the people we’re reaching out to for help (but please note that this does not ever excuse domestic abuse!) We might also have more trouble thinking and problem-solving, which can impact our ability to access our self-regulation strategies- such as when you try to read a book or watch TV to calm down, but are too upset to pay attention to it or too overwhelmed to remember where the book or TV remote would be.

All of these barriers exist even for neurotypical adults without disabilities who do not typically struggle to communicate with others in most contexts, do not have heightened levels of sensitivity to most sensory or emotional stimuli, and do not have difficulty with executive functioning skills such as impulse control, organization, planning, memory, attention, and task initiation. For neurodivergent children with complex communication needs, heightened sensory and emotional triggers, and executive functioning impairments, communicating in the ways that adults expect them to may be physically impossible when they become distressed, even if they are able to do this when they are in more regulated states. In addition, children often have decreased access to self-regulation strategies not only because of their decreased neurological maturity relative to adults, but also because of their decreased control of their own lives. Children may be dependent on adult assistance or permission in order to access regulating items and activities such as food, drinks, toys, technology, the outdoors, movement breaks, prescribed medications, and even the opportunity to sleep, any of which adults without disabilities can most often access independently.

In infants, prior to the development of conventional gestures and use of spoken, signed, picture-based, or text-based communication, the strategies used to communicate to adults about their regulation needs are similar to, or in some cases identical to, the strategies they use to attempt to regulate themselves. Infants communicate their needs and feelings through facial expressions (grimacing, opening and closing eyes, and later smiling), shifts in gaze (towards or away from someone or something), crying (infants without disabilities typically use distinct cries to communicate different needs by 3 months old), other vocalizations (e.g., cooing, grunting, babbling, shrieking, laughing), body movements (e.g., flailing arms, splaying fingers, arching bodies, grasping objects and people, and, as they gain mobility, attempting to move towards or away from objects or people), muscle tone (tight or relaxed), and autonomic signs (e.g., heart rate, breathing rate, skin coloration). 

All of us, if we become distressed enough, may only or mainly be able to access the communication methods we acquired in infancy. For example, when in the grip of an intense wave of grief, we may communicate mainly through crying, body posture, and facial expressions. When we badly injure ourselves, we might communicate through body language, facial expressions, and screaming. If we are being physically attacked, we might communicate by screaming, crying, and physically lashing out at our attacker. An important consideration here is that restraint is absolutely a physical attack that triggers physiological responses that are identical to those triggered in the case of an illegal assault or animal attack.

We know that in infant development, the only way for infants to develop a larger repertoire of regulation skills and strategies is if we are consistently responsive to their current methods of communication and work to reduce stressful environmental input and increase calming input. Different babies will respond to different strategies, but we may be able to help them regulate by providing regulating input: talking to them gently, touching them, holding them, rocking them, swaddling them, feeding them, giving them a pacifier or a toy to suck on, playing gentle music, providing visual stimulation such as a mobile or bubbles, or giving them something to grasp. We also may be able to help them calm by decreasing dysregulating input (e.g., turning off a TV or loud music that may have startled them, walking with them to a quieter area, turning off bright lights). Many of these strategies are routinely recommended by professionals for premature or substance-exposed infants in particular. Any time an infant, toddler, or older child is dysregulated, we will need to attend to their communication signals to figure out which strategies are helpful to them in this moment and which are not and respond accordingly. Consistently helping them in these ways will teach them what calmness feels like (Shanker), teach them that others are trustworthy and care about and will respond to their emotional and physical needs, and give them a bank of regulation strategies that they can begin to use on their own as they get older.

Likewise, when adults without disabilities become so upset that they lose their access to most formal methods of communication, we might use some similar strategies: speaking to them in a quiet, reassuring way, offering physical affection, bringing them items that typically comfort them, getting them food and drinks, offering to put on a favorite movie, offering to go with them to a quieter setting or go for a walk with them, or just sitting with them quietly and keeping them company. And as with infants, we will be most effective at soothing other adults if we observe and respond to the ways in which they are currently able to communicate (e.g., not continuing to hug them if they stiffen or pull away, not playing loud music or TV if they seem to be flinching at the noise, not trying to pressure them to go outside if they tense up or cry harder at the suggestion).

Yet, neurodivergent children with complex communication needs who become too dysregulated to access their speech or communication systems, even to process and understand what others are saying to them, are often ignored, prompted repeatedly to “use your words,” marked down on a behavior chart or placed into the “red zone,”, made to lose tokens in a token economy, threatened with consequences, publicly shamed (e.g., by statements to peers or other professionals in front of the child, such as “oh, X isn’t being a good listener” or by having their name written on the board), physically forced to comply with adult demands, and/ or spoken to harshly.

Ignoring an infant’s cries or babbling doesn’t teach them to speak, and demanding that they follow your directions or face consequences doesn’t teach them to understand spoken language. Prompting a crying adult over and over to “just tell me what you want!” doesn’t make it easier for them to stop crying and get their words out. Babies can’t be bribed or threatened into talking when they haven’t developed that skill. Adults can’t be bribed or threatened into not crying while extremely dysregulated (or if they can, like, under threat of torture, it will take a huge tax on their emotional health and energy level and will not indicate that they are any more skillful or regulated). 

When I was four years old, my babysitter once told me that if I didn’t stop crying when upset instead of “using my words,” then she wouldn’t be able to take me places anymore. I’m told that I replied, “That will just make it worse!” 

If a child with complex communication needs, or any child, is unable to access symbolic communication such as speech, signing, typing, writing, or a communication device or book at a given moment, ignoring the ways in which they are already communicating (e.g., reaching, vocalizing, crying, hitting, throwing, self-injury, “flopping” to the ground) or repeatedly prompting them to communicate in a different way won’t make it any easier for them to either regulate themselves or communicate their needs. And punishment or lectures or threats will, as I said when I was four, “just make it worse.” 

“You want to figure out what the stresses might be, and to do that you start by… not becoming a stressor yourself.”

-Shanker. Self-Reg. Page 99. 


T. Berry Brazelton. Touchpoints: The Essential Reference.

Amy C. Laurent, PhD, OTR/L and Jâcqûelyn Fede, PhD. Autism Level Up.

Stuart Shanker. Self-Reg: How to Help Your Child and You Break the Stress Cycle and Successfully Engage with Life.

One Response

  1. This is a simply stellar article, Casey, and supports why I prioritize co-regulation in my work. THANK YOU SO MUCH for writing this.

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