Letting Go of Control and Rethinking Support for Autistic Individuals | Amy Laurent | TEDxURI

Summary

Amy Laurent, an occupational therapist, shares her transformative journey in working with autistic children. Initially, she followed traditional behavioral methods that viewed autistic behaviors as disruptive, often focusing on suppressing them. However, through personal experiences and insights from autistic adults, she realized the importance of shifting from behavior management to emotional regulation. This involves understanding and embracing autistic behaviors as vital expressions rather than maladies to be fixed. By fostering emotional regulation and forming partnerships, we can empower autistic individuals to navigate their environments successfully, while society learns to accommodate their unique neurological differences.

Highlights

• Amy Laurent questions traditional approaches to managing autistic behaviors 🤔
• Highlighting the role of sensory processing differences in autistic behaviors 🧠
• Stressing the importance of understanding autism through the voices of autistic people 🗣️
• Moving away from making autistic individuals indistinguishable from neurotypicals 🚫
• Focusing on empowerment and accommodation rather than control 🎉

Key Takeaways

• Shift from behavior management to emotional regulation for autistic individuals ➡️
• Embrace autistic behaviors as vital expressions, not issues to fix 🌟
• Partnerships empower autistic individuals to manage risk factors effectively 🌐
• Educational practices need to adapt to new understandings of autism 🏫
• Autistic people teach us invaluable lessons about neurodiversity 🌈

Overview

Amy Laurent began her career as an occupational therapist, working with autistic children using traditional behavioral methods. These methods typically aimed to suppress what were seen as 'disruptive' autistic behaviors. Over time, Amy realized these were not just behaviors to manage but vital expressions of the autistic individuals' internal experiences.

Through her work, Amy learned that focusing on behavior management wasn't effective. Instead, embracing and understanding the neurodiverse experiences of autistic people led her to advocate for emotional regulation. This approach emphasizes supporting autistic individuals in managing their emotions and reactions rather than trying to control their behaviors.

Amy emphasizes forming partnerships with autistic individuals, advocating for their empowerment, and recognizing valid expressions of emotion. By doing so, we accommodate their unique needs and learn from their perspectives. This shift from control to collaboration reflects a deeper understanding of autism and promotes a more inclusive society.

Chapters

• 00:00 - 04:00: Introduction and Early Experiences The chapter titled 'Introduction and Early Experiences' discusses the speaker's initial experiences as an occupational therapist working with autistic children. The speaker had no prior experience or knowledge about autism and hence began to educate themselves by reading extensively. This chapter sets the stage for the insights and experiences that follow in the speaker's journey.
• 04:00 - 08:00: Questioning Behavioral Management The chapter 'Questioning Behavioral Management' explores the prevailing themes about children with autism during a certain period. One of the dominant views was that these children were akin to 'empty fortresses,' difficult to reach emotionally. They were often perceived as unfeeling and emotionally blind. A significant part of the discussion references Dr. Evar Loas, a leading authority on autism education, who advocated for starting from scratch with children with autism using behavioral principles. This perspective suggests a foundational rebuilding from a purely physical basis, without prior emotional or intuitive connections.
• 08:00 - 12:00: Understanding Autistic Behaviors The chapter 'Understanding Autistic Behaviors' discusses the concept of 'building' a child in the context of autistic behaviors. It describes the practice of scaffolding development by stripping away behaviors that interfere. The narrator reflects on their concerns and curiosity about their role and qualifications as a new graduate in this process.
• 12:00 - 16:00: Impact of Risk Factors The narrator describes feeling nervous on their first day of work, where they are about to meet their first client, Corey. Surprisingly, Corey appears more like a child than expected. Before interacting with Corey, the narrator is given a behavior management plan by Corey's behavioral therapist, outlining behaviors Corey is not allowed to do, such as jumping and spinning.
• 16:00 - 20:00: The Call for Change The chapter delves into the challenges faced by individuals with autism, particularly through the eyes of a character struggling with understanding autistic behaviors. It highlights the use of tools like a 'token board' and behavior plans to manage these behaviors in a structured environment. The narrative explores the emotional response and the necessity of such methods to encourage desired behaviors and discourage nonfunctional, disruptive actions in autistic individuals, suggesting a call for change or better understanding in managing autism.
• 20:00 - 25:00: A Shift to Emotional Regulation Corey and I entered a space resembling a giant playground filled with inflatable cushions, slides, and swings, creating an exhilarating environment for play. As we engaged in various playful activities—jumping, crashing, spinning, and laughing—I realized my struggle with inhibiting forbidden behaviors during moments of play. The immersive nature of the playground highlighted my challenge in regulating emotions and actions in such a stimulating context.
• 25:00 - 30:00: Forming Partnerships The chapter discusses the dynamics of forming partnerships, highlighting a scenario involving Cory, who expresses excitement through physical movements. Despite being told by a behavioral therapist to keep 'quiet hands,' the narrator supports Cory's natural expressions, noting that his actions don't make sound. This reflects broader themes of communication and understanding in partnerships.

Letting Go of Control and Rethinking Support for Autistic Individuals | Amy Laurent | TEDxURI Transcription

• 00:00 - 00:30 [Applause] 20 years ago I was a newly minted occupational therapist and I took a job working with children diagnosed with autism now I had never worked with an autistic child before and to my knowledge I had never even met an autistic individual so I did what you do in those times when you have no idea what's going on and I started to read and as I did I encountered many concerns
• 00:30 - 01:00 themes children with autism are like empty fortresses you have to break down walls to reach them they are unfeeling they live in emotional blindness and there was one concerning theme that I kept encountering over and over again and it was put forth by Dr Evar loas who was considered to be the preeminent Authority on educating children with autism at the time using behavioral principles and this theory was that when you were working with a child with autism you were starting from scratch you had a child in the physical sense
• 01:00 - 01:30 hair ears nose eyes but not in the psychological sense you had to build that child and often to build that child in scaffold development you had to strip away interfering behaviors now you can imagine that I was quite concerned and wondered what I had gotten myself into and I was also extremely curious as to what my qualifications as a new grad were for child building
• 01:30 - 02:00 so there was some trepidation when I went to my first day of work and I was about to encounter my first client I look across the waiting room and there sits Corey surprisingly looking like a whole child now before I can even say hi to Corey I'm whisked to the side of the room by his behavioral therapist and handed a behavior management plan and in this plan is a list of all the things he's not allowed to do jumping spinning
• 02:00 - 02:30 flapping his hands silly talking and all I can manage in that moment is why why can't Corey do these things and the answer comes back at me super fast they are autistic behaviors they are stems they are nonfunctional and they're disruptive we actually use this token board to encourage him not to engage in them she handed me the token board she handed me the behavior plan and we went into our session now what you need to know is this environment the
• 02:30 - 03:00 enter we entered was like a giant playground there were inflatable cushions there were slides swings we're talking fun Corey and I started to play and as we played we jumped we crashed we spun we laughed and it was really apparent that I was not good at inhibiting forbidden behaviors when I was actually engaged in them myself because I was lost in play
• 03:00 - 03:30 it also was really evident to me that every time Cory got excited he would jump and he would flap and he would jump and he would flap and he would giggle every single time and I would say you look so excited and the behavioral therapist would say quiet hands and I would go his hands are quiet this doesn't make any sound okay so it should come as no surprise
• 03:30 - 04:00 that I was relieved of the token board and the responsibility for implementing that behavior management Plan before the session even ended I left my first encounter with an autistic child with two thoughts two the first one was I was really really bad at behavior management plans the second was a question a question of why why did Corey engage in these behaviors they appeared fun to me
• 04:00 - 04:30 now as I settled into my new job it became apparent to me that this question of why didn't just apply to Corey it applied to all the children on my case load so every time a behavioral therapist would come into a session with me I'd ask the same question why does a child engage in these behaviors and the answer was always the same because they have autism and I would counter with well that's pretty circular because they only qualify for a diagnosis of autism because they engaged in these repetitive
• 04:30 - 05:00 restrictive and stimmy behaviors this focusing on extinguishing on getting rid of autistic behaviors formed the Bedrock of almost all of my clients educational programs this was pretty uncomfortable for me because as I said while they looked slightly different from the norm like Cory jumping and flapping every time he got excited they appeared functional and this idea that you could fix a child or these Pro behaviors were problems hearken back to that early reading I did
• 05:00 - 05:30 that viewed autism is something different and something deficient now the voices of autistic adults are very clear in telling us this approach to extinguishing autistic behavior is flawed in fact you can't change underlying neurological differences by simply getting rid of some behaviors you can't uncover a hidden neurotypical Child by extinguishing hand flapping so we have mounting evidence
• 05:30 - 06:00 that tells us that these behaviors are the result of differences differences in sensory processing differences in social communication and neurophysiological differences they're risk factors and these risk factors are best understood in listening to the voices of individuals with autism so I'm going to invite you to do just that now let's talk about some risk factors for disregulation for those of us with sensory issues
• 06:00 - 06:30 they include noisy restaurants and other places tags on clothing and also lighting fixtures that are ovally bright and especially recessed lighting fixtures that we find commonly in ceilings social environments a certain social environments can also be disregulated any activity with social interaction is the primary goal rather than the activity executive functioning thinking about thinking for example having to
• 06:30 - 07:00 keep track of too many things without a schedule or something to refer to just not having a plan not having things be predictable Assumption of knowledge that I don't just automatically have just not having control over my environment so and you know and then there's just the whole cumulative cogni of rain barrel how much energy have I utilized uh how much energy have I utilized for moment moment in my day
• 07:00 - 07:30 whether it's sensory or it's social or it's task performance and task demands or it's language processing demands is just too much for me a lot of the times I'm just saying this environment is overwhelming we have research that validates these sentiments research that not only validates it but extends it studies that show that the average resting heart rate of an individual with autism is much higher than neurotypical
• 07:30 - 08:00 peer studies that demonstrate elevated cortisol levels in the context of social interactions with other people and studies that clearly show Under and Over responsivity to sensory information in the environment and in this context we begin to understand these risk factors and their impact on the experience of an individual with autism they result in heightened reactivity heightened states of arousal and sometimes behaviors that can appear as explosivity so again we
• 08:00 - 08:30 need to ask the question why why does this occur and when we ask that question it becomes very clear that the risk factors result in an intensity of experience which cannot be contained my internal state is not really reflected um in a way that a neurotypical person might recognize as Joy um but I will say a lot of it can be things like hand Flappy and
• 08:30 - 09:00 um like the bouncing and swaying things like that hey I am NE cats and I am thrilled to share my story I feel Stress and Anxiety every day when I feel out of control of my life I experience tight tenseness throughout my body and others seeus as me not listening and being compulsive uh experiencing stress is overwhelming but in in the worst of ways
• 09:00 - 09:30 it's like it cannot be contained it has to come out and not in words in fact I don't really think or experience words when I am stressed it's a very physical experience in the midst of it in a moment um where I'm highly stressed you know I Pace I grab my head and and I scratch my scalp I bite my cuticles and my hands um more and deeper and harder than usual
• 09:30 - 10:00 um it feels like I'm in this chaotic Mayhem and like I need to throw myself full force into a wall or smash things and in my most stressed times I I do that some of these behaviors sound very familiar to us things that we might engage in in times of intense Stress and Anxiety some of them are less familiar but they are all grounded in neurological development it's human nature to seek out repetitive rhythmic actions especially paired with pressure
• 10:00 - 10:30 when we experience extreme stress and extreme excitement we start to understand that the intensity of the experience of an individual with autism calls on these explosive behaviors occurring much more frequently given this knowledge it's time for educational practice to reflect what we know we know better we understand risk factors and intensity of experiences
• 10:30 - 11:00 we actually need to be doing better again adults with autism are crystal clear they challenge us to rethink the status quo of behavior management trying to make them appear indistinguishable from the neurotypical population despite the fact that they have a unique neurology we need to understand the behavior but understand it within the context of autism the behavior in question was more than just a behavior to me it lay at the very core of who I
• 11:00 - 11:30 was and I don't know why I had that instinct but I just did and so it made the hurt doubly worse because they weren't just criticizing Behavior they were criticizing the very fiber of who I was so as we communicate our emotions these behaviors May then be squelched and trained out of us the sense that Mom therapist or Society wants to fix me um and not really seeing our personhood to control those emotional experien and how
• 11:30 - 12:00 they look is to control me and who I am it doesn't just feel yucky or tiring or boring it isn't just unpleasant it feels like living hell like total confusion and a feeling of being lost or incompetent again the weight and this of these sentiments the rawness of them cannot be ignored it's time for educational practice to reflect our knowledge our knowledge from the research and our knowledge from the voices of AU artistic individuals and
• 12:00 - 12:30 when we do that we need to rethink this focusing on extinguishing behavior on control and compliance because the voices of autistic adults are also very clear about the very real dangerous and damaging outcomes of such a focus instead of focusing on making them indistinguishable from their peers which means making it so that they just go along to get along and that can result in very tragic outcomes another area that's important to address is behavior
• 12:30 - 13:00 plans token economy focus on compliance-driven programs and how they can be potentially dangerous and damaging and in some cases creating post-traumatic stress syndrome to autistic individuals two results emerge one anxiety increases and two there's internal damage due to our Comm communication not being honored and
• 13:00 - 13:30 strong emotions like rage like rage sibs room destruction or suicidality these lived experiences of enduring educational programs which focus on behavior management and focus on trying to make someone appear indistinguishable despite their unique neurology need to become a thing of the past we need to move forward so the question becomes what's the shift if behavior management isn't the way what is the shift is one from behavior
• 13:30 - 14:00 management to emotional regulation we're going to take the focus off of that observable autistic stimmy behavior and focus on the unique underlying experience of the individual with autism fraught with those risk factors and that intensity of reaction we're going to embrace that neurodiversity and we're going to move away from management this external locus of control where I'm putting some arbitrary plan in place to control your behavior to make it look like you fit in and I'm going to shift
• 14:00 - 14:30 that to regulation regulation is a developmental construct where we teach individuals with autism new tools and strategies to be able to navigate their days successfully to regulate those strong emotional reactions so we move away from behavior management this external locus of control to emotional regulation a focus on skill development within the autistic individual and in that way we Empower them we Empower them to navigate their days successfully and
• 14:30 - 15:00 when we do so we maximize their potential it is vitally important to remember that autistic people are not a collection of behaviors to be modified but rather individuals to support so that we can use the strengths that they have to lead fulfilling and productive lives and to make that the rule rather than the exception I just think that we need to be focusing on helping kids kids and adults maximize their potential and
• 15:00 - 15:30 become the very best people they can be including their disability um in all my years uh running the world's largest membership Organization for adults on the Spectrum I certainly got it that this was all a 2-day street that the rest of the world had a lot of work to do and that we had some work to do as individuals on the Spectrum I don't know what that percentage is between the two of how much work needs to be done but I do believe firmly that from our end that 90% of our problems as adults in life
• 15:30 - 16:00 are caused by an inability to manage our challenges for emotional regulation so as we make this shift this shift to emotional regulation we form a partnership a partnership in which we help scaffold skills and abilities so that individuals are able to regulate their emotions and deal with the risk factors that they have but also a partnership that recognizes that we need to make accommodations to the environment so they're not so
• 16:00 - 16:30 overwhelming or activities and it's within the context of this partnership that our question starts to transform it's not just a question of why anymore but now it becomes a question of how and starts the conversation with the individual by asking how can I help and I think that a lot of emotional regulation strategies really can be benefit from that very concept but it's hard feeling tense it's hard feeling mad and stuff
• 16:30 - 17:00 sometimes it's hard for me to take deep breaths when I'm really angry it would be key if we had some space and stuff and had some time alone in our rooms and relaxed and did some good things and but I think that the help that would benefit me most from someone is to recognize that all of these behaviors um are just communication and they are valid uh messages valid
• 17:00 - 17:30 communication and it's not just a part of autism so in the shift to emotional regulation we form a partnership and we honor and we acknowledge and we Empower we teach new strategies and we also make accommodation for The Unique neurological differences and it's a shift a paradigm shift with starts with that question why but it reflects that we have so much more knowledge now and that we need to leave educational practice behavior management that is
• 17:30 - 18:00 rooted in limited understanding behind we need to move forward and in this context we understand that it was never about building a child or inhibiting behaviors when I was interacting with Corey but about me helping him learn new and different ways for emotional expression and to manage those risk factors and in that partnership it's also about me accommodating him so the world isn't so overwhelming for him and
• 18:00 - 18:30 in the partnership it is also critical to acknowledge that we have so much to learn from individuals with autism for instance Corey taught me that autism is really just a different way of being and honestly the best lesson was that jumping and flapping is an awesome way to let Joy flow through you like really try it after you're done here now given that this is a partnership and that I have been joined
• 18:30 - 19:00 by seven amazing autistic adults that I am extremely fortunate to call my dear friends I would like to step aside and let you listen to them and learn from them one last time let go of control don't try to change us listen to me learn from us respect us support us Empower us thank you very much