Shifting Perceptions & Paradigms on Self-regulation

Over 20 years ago when I first began working in the field of autism, I learned the “gold standard” of interventions and naively thought that behavior could be easily deciphered, like a code that would give me hints as to what was going on with my autistic students. The lens through which I looked through in those early days was horribly skewed. Blind to my own astigmatism, my training along with my socially constructed interpretations regarding autistic behavior guided me time and again to erroneous conclusions: I viewed autistic behavior as volitional and not purposeful and even worse, an insight into cognitive functioning.

I thought I understood what it meant to self-regulate. I thought autistic individuals needed support because their behavior was not “productive” and they did not know how to help themselves. Hindsight is truly and sometimes painfully 20/20. I was so far from having even the slightest clue as to what was going on! I had no idea of the complexity involved in self-regulation and completely misunderstood the motor efforts that my students were making as they attempted to accommodate their nervous system’s processing of vast amounts of sensory information. Fast forward and thankfully I have a new set of lenses. The sensory-motor perspective has clarified my vision and thanks to a growing community of autistic self-advocates, families, and professionals who are like-minded, I always presume competence and have a better understanding of autistic movement and what really happens during the process of self-regulation.

A conventional and simplified definition of self-regulation is “the ability to regulate one’s own behavior, emotions, and cognition – it is fundamental for achieving personal goals and successful socio-emotional adaptation.”¹ But a more encompassing and holistic view of self-regulation reveals that it is a dynamic neurological process involving sensory feedback that is fundamental to “attaining spontaneous autonomous control over our actions in order to make them volitional.”² Whether learning to dance or trying to tune out noise while reading a book, the self-regulatory process is a continuous bi-directional loop of sensory information flowing between what our body senses and how our brains respond in terms of movement. The very definition of self-regulation suggests that one must be intentional and purposeful while moving in order to make adjustments that might be needed as the brain processes what’s going on both inside and outside of the body.

Before we explore this “bi-directional flow of sensory information,” let’s dig a little bit further into what purposeful movement really means. Purposeful or volitional motor movement occurs in the supplementary motor cortex. And to be more accurate, praxis is “the neurological process by which cognition directs motor action.”³ Put simply, praxis involves the ability to create an idea, make a plan, initiate and execute the motor action, all while making the revisions needed to achieve success. Conscious effort must occur when we engage in praxis. A great example of this is when you first learn to drive a car. Think about how much mental effort it took for you to remember to first put on your seat belt and then to put your foot on the break in order to start the engine when you turned the key (back before there were keyless ignitions!) When learning any kind of new activity, even a challenging one, but for most of us, our body can follow through with the steps that are needed. We might need to focus a bit and pay attention to what we are trying to do, but it really doesn’t require much more mental or physical effort than that.

This kind of intentional motor planning is a completely different experience for autistic individuals. For years now, autistic self-advocates have reported experiencing a “mind-body disconnect” and have expressed extreme frustration with knowing what they want to do but having a body that is uncooperative almost with a mind of its own. According to Anne Donnellan, “typical volitional control (in autism) is highly compromised often with a striking disconnect between the intentions and the actions…”⁴ She goes on to say that some “observed behaviors may be artifacts of the difficulties a person may be having in organizing and regulating sensation and movement” and that “self-advocates also report that they lack sensation or feedback from their bodies and may feel physically unaware of their facial expressions, position in space and movements…”⁵

Research is proving what autistics have known and have been living with for years! While the brain is the fundamental organ of self-regulation, it is interdependent on the sensory information coming from within as well as outside of the body. “Not only must the brain regulate the body and be regulated itself in keeping with external realities, but it must also regulate and be regulated in keeping with internal realities.”⁶ Think about the kind of sensory information that comes at you in just a few seconds out of your day. As I write these words, I hear wind chimes outside my window ringing in the wind and in my peripheral vision I can see the flicker of palm tree leaves moving. My sleeping dog rolls over and I feel my stomach growl all while hitting the correct keys on my laptop to type these words. The sensory nerves in my body detect all of this and send impulses that it has received from receptors to my brain in mere milliseconds. Then it’s up to my brain and spinal cord to figure out how to respond.

In her research, Elizabeth Torres found that “fast, automated goal-less motions may be routed differently through the subcortical “unconscious” proprioceptive GSA fibers” (i.e. nerve fibers.) While “goal directed movements may be routed through the cortical “conscious” proprioceptive GSA fibers.”⁷ In other words, sensory information is routed via specialized nerve fibers towards the central nervous system depending on the type of information the nerve receives. These signals being sent to the brain must be both accurate and routed correctly for the peripheral and central nervous system to be able to decipher what information is relevant or irrelevant as it guides motor control. And all of this occurs beneath our awareness. Our neurology is simply amazing, and most of us take it for granted! According to Torres, to be able to control or “regulate” motor output, any biological system requires sensory feedback in “real time.”⁸ All movement whether it be “goal-less” or “goal-directed” requires us to “selectively find and use the form of sensory-motor guidance to help make us more efficient at choosing and controlling the right motor programs in the face of sensory-motor noise.”⁹

Image Credit: Autism: the micro-movement perspective, E. Torres, et.al., 2013

Imagine if the flow of this vital sensory information was interrupted or somehow misinterpreted by the body? Once again, research is catching up! Neurons communicate with each other chemically and in between the synapses or gaps neurochemicals allow information to flow between the neurons and all along neural pathways. Torres found that the feedback between the synapses was “noisy” for autistics and that the information about the outside world and from inside the body was scrambled and random.¹⁰ This “neuronal noise” impacts how autistics sense the world and how they move accordingly.

Remember the brain-body disconnect? We’ve all heard descriptions of how the autistic brain is “wired differently” but what’s really being described here is a sensory movement difference. “Sensory movement differences are defined as a difference, interference, or shift in the efficient effective use of movement. It is a disruption in the organization and regulation of perception, action, posture, emotion, speech, and/or memory.”¹¹ So it’s really mixed messages that are being generated at the synaptic level so to speak that are being sent to the brain. Think about what this really means. Whether the message contains too much or not enough sensory information, the brain will always attempt to interpret and respond. Mixed messages also interfere with the brain’s ability to suppress the subcortical regions which are guided by reflexes and impulse signals. And let’s not forget about praxis!

As mentioned earlier, many autistics have significant challenges with intentional motor planning. And so it’s truly as they have been saying for years: they know what they want to do, but their body may not be able to execute the movement smoothly or they may do a completely different movement altogether. When we support nonspeakers, minimal or unreliable speakers in spelling to communicate, we are helping to build sensory organization and motor control by teaching intentional and accurate motor movements. As CRPs (Communication and Regulation Partners) we are conscious as to whether or not we are helping our students to organize that sensory noise or if we are contributing to it. We support self-regulation strategies and always promote positive messages about our student’s efforts.

Human beings are hardwired to make interpretations about the actions of others. And whether we realize it or not, we adhere to internalized standards about what behavior or self-regulation should look like which inevitably leads to assumptions. Thank goodness for communication! It allows us to have conversations with others about their experiences and intentions. I know you’ve heard this before but try to imagine having neurons that can’t send a clear message to your brain and then having a body that cannot follow through with what you’re thinking! Surely you would want to communicate about your experiences because people make assumptions, even about your cognitive abilities. But how can you do that if you cannot even speak?

Being a person with reliable speech I know how much I take my effortless communication and body movement for granted! I’m grateful that I can clarify assumptions made about me and this is exactly why spelling to communicate must be available for all who experience challenges with spoken communication. I want to go back in time to my 25-year old self and educate her. I want to tell her about Anne Donnellan and how she said, “our assumptions about a person’s intention or meaning directly influence the way we respond moment to moment, the relationships we form and the support we give to people.”¹²

This post is about self-regulation, but we cannot learn about it without addressing the current paradigm that exists about autistic behavior and the related assumptions that automatically occur. These assumptions are dangerous on multiple levels, not only because of the interventions they lead to, but because of the beliefs that are created surrounding ability and competency. Once we can recognize these social constructs, we can begin to tear down our own beliefs and re-build our understanding about the autistic self-regulatory process.¹²

Let’s close with a lesson we have learned from Anne Donnellan, “We do not put people in jeopardy by overestimating their experience. We do look for competence instead of deficits and talk to people in age-appropriate ways. And we model such interactions for all those who are, or may become, willing to know them better.”¹³

Deborah Spengler
S2C Practitioner

Notes

1. Ludwig, K., Haindl, A., Laufs, R. M., & Rauch, W. A. (1970, January 1). Self-Regulation in Preschool Children’s Everyday Life: Exploring Day-to-Day Variability and the Within- and Between-Person Structure. Retrieved from https://www.semanticscholar.org/paper/Self-Regulation-in-Preschool-Children’s-Everyday-Ludwig-Haindl/dcde866be4586db1ab9824d9f4c16e2ba122eb8d
2. Torres, B, E., Maria, III, R. W., Yanovich, Polina, … V, J. (2013, April 21). Autism: the micro-movement perspective. Retrieved fromhttps://www.frontiersin.org/articles/10.3389/fnint.2013.00032/full
3. Ayres, A. J., Mailloux, Z. K., & Wendler, C. L. W. (1987). Developmental Dyspraxia: Is it a Unitary Function? The Occupational Therapy Journal of Research, 7(2), 93–110. doi: 10.1177/153944928700700203

^4.Torres, B, E., Autism: the micro-movement, (2013, April 21).

5. Torres, B, E., Autism: the micro-movement, (2013, April 21).

⁶The self-regulating brain: Cortical-subcortical feedback … (n.d.). Retrieved fromhttps://www.researchgate.net/publication/222522595_The_self-regulating_brain_Cortical-subcortical_feedback_and_the_development_of_intelligent_action

^7.Torres, B, E., Autism: the micro-movement, (2013, April 21).

^8.Torres, B, E., Autism: the micro-movement, (2013, April 21).

^9.Torres, B, E., Autism: the micro-movement, (2013, April 21).

^10.Torres, B, E., Autism: the micro-movement, (2013, April 21).

^11.Leary, M. R., & Donnellan, A. M. (2012). Autism: sensory-movement differences and diversity. Cambridge, WI: Cambridge Book Review Press.

^12.Donnellan, A. M., Hill, D. A., & Leary, M. R. (2013, January 28). Rethinking autism: implications of sensory and movement differences for understanding and support. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3556589/

^13.Donnellan, A.M., Rethinking autism: implications, (2013, January 28).