The Human response to fear: Meltdowns, Shutdowns, Withdrawal, Escape
Challenging Autistic Undesired
Human Feelings & Behavior
Meltdown, shutdown and withdraw happens when the mind becomes "hooked" on a negative stimulus—whether a sensory experience (a harsh sound, uncomfortable texture), a thought (a painful memory, a worrisome prediction), or an intense emotion—the amygdala, the brain's fear center, is immediately activated. This triggers the body's fight-or-flight response: the “autonomic nervous system” is now running the show: stress hormones surge, increasing heart rate, blood pressure, and alertness. The intense focus prevents the individual from shifting attention or engaging in cognitive coping strategies.
Triggers can come from any of the senses - including (and often) the sense of interoception. Fear, sudden movements, loud sounds and worry about the future are likely catch the attention of the autonomic nervous system. “Threats’ from the psyche - fear of failure, things not going as expected, embarassment, threatened relationships, and dread can be particularly powerful motivators for autonomically driven behavior.
Neurotypical parents and caregivers may not immediately understand 'why’ fight/flight has been activated, but that doesn’t need to change our approach. A human in crisis needs empathy and support, not rewards or consequences. Treating a child who is experiencing a physiologic activation of survival instincts with behavioral modification (and without understanding the reason for activation) not only teaches the child to surpress emotion and causes trauma.
The problem with framing states of meltdown or shutdown as ‘Challenging behavior’ is that this term is centered on the experience of the parent, teacher or medical professional - the person who is trying to ‘manage the behavior’. It is dismissive to the physiologic and pyshcologic experience of the human in distress. The term negates what we know: that meltdown, shutdown and withdrawal is not wilful disobedience or ‘bad behavior’, it is activation of the human fight/flight/freeze survival instinct.
““Seeking to eliminate behavior without fully understanding its purpose is not only unhelpful; it also shows a lack of respect for the individual. Worse, it can make life more difficult for the person with autism.”
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Ask Why.
(And then ask why again)
Rigidity, clinging to routine & avoiding the unknown are often human responses to uncertainty.
Avoiding, escaping or refusing can be innate - conscious or subconscious - responses to fear
Demand avoidance emerges a human response to sensory or cognitive stress - it is what we do when things feel like more than what we can handle. It also results from threatened autonomy.
Flapping, moving, fidgeting and spinning can be responses to joy, excitement anticipation or help with focus.
Focus on a topic of interested feels wonderful, and can be all consuming & sometimes draining.
Deep pressure may feel calming. Rocking is comforting. Unexpected touch can be frightening. Eye contact can be intense.
Flickering lights, ruminating thoughts, hurt feelings, a mechanical drone or an itchy tag can be impossible to ignore.
How each of our unique neurobiolgoy notices, prioritizes and processes our sensory environment (inside us and around us) changes how we respond.
Supressing innate behavior
Whether or not we understand why. Whether or not our neurobiology experiences it the same or different. Whether or not we notice. We cannot allow a difference in neurobiology negate or devalue a human’s experience.
And we must recognize that any therapy aimed at eliminating innate behavior - especially in absence of understanding and explicit consent - can be as harmful as trying to train anyone to not jump when startled, or not eat the food in front of them when hungry, or to not cry when sad.
Behavior communicates human experience.
From the behavior experts:
If I had to pick a starting point, this is it. Autism is beautifully presented s a unique way of being human.
When we are dysregulated—emotionally or physically—that we cannot learn, or often even listen.
Before we can shape behavior or build regulation skills, we must first ask a fundamental question: does the nervous system feel safe?
On Applied Behavioral Analysis and Therapy:
ABA (Applied Behavioral Analysis) therapy remains one of the most commonly used interventions for autistic kids in the US and is often the only therapy covered by insurance. Despite its widespread and mainstream use, ABA therapy remains highly controversial.
Some of this controversy is rooted in the past. ABA was developed by the same scientist (Dr. Lovaas)- and using the same foundational science – as conversion therapy for LGBTQ youth. Dr. Lovaas publicly considered autistic humans to sub-human.
Since its origin, ABA has undergone significant evolution, and it is inaccurate to compare today’s ABA therapy used in the 1960’s. There is also wide variation between ABA practices and implementations. Some practitioners had adapted their practices to align more with neurodiversity affirming practices, and some have not. It is very difficult to tell the difference and the controversy remains.
The fact that many autistic adults who received ABA therapy as kids liken it to emotional or psychological abuse should give us as parents and medical professionals immediate pause before pursuing ABA therapy for our kids.
Modern ABA therapy still abides by the principle of making a child appear and behavior more similarly to their neurotypical peers. Normal behavior is inherently defined as neurotypical behavior and desired behavior is usually defined by the adult or behavioralist without input from the child.
Jule Bascom as head of the Autism Self advocacy agency stated in 2023: “The stated goal of ABA is an autistic child who is ‘indistinguishable from one’s peers – an autistic child who can pass as neurotypical. We don’t think that’s an acceptable goal. The end goal of all therapies, supports, interventions, and therapies an autistic child receives should be to support them in growing up into an autistic adult who is happy, healthy, and living a self-determined life.
The problem is not in using behavioral interventions to teach a regulated kid to hang up their coat when the get home, or to wash their hands after using the toilet. The harm arises when behavior therapy is used to change innate behavior, or alter behavior without understanding the true reason be hind it – such as when well-intentioned neurotypical providers provide involves non-harmful stimming or coping mechanisms.
In the words of Carol Millman: ABA is good at accomplishing what it set out to accomplish. There is plenty of research demonstrating this, and ABA practioners point to it often. You can use it to change an organism’s bheavior. But should you? Read more
The harm that has been caused by ABA therapy is not controversial, subtle or unknown:
1. A 2022 Study out of Europe found that 92% of autistic adults who receved ABA therapy opposed or strongly opposed ABA therapy. Read more
2. A 2018 study found that adults with autism who received ABA were more prone to suicide.
3. A separate studies showed that 46% of 460 ABA participants met the threshold for PTSD
ABA therapy is not a ‘gold standard’ treatment and the suppo:
1. Evidence of the benefit of ABA is ‘Very Weak’ according to a 2018 Cochrane review
2. A 2022 Department of Defense report demonstrated a lack of correlation between improvement in symptoms and hours of direct ABA services, found that the improvements recorded were due to reasons other tha ABA services and ABA services did not meet the TRICARE hierarchy of evidence standard for medical and proven care.
We can debate the evidence, the quality of the studies, etc., and we can note how kind, compassionate and caring ABA therapists are (they are!) but that will not change the fact that there is a very outspoken and united group of adults who received this therapy and consider it harmful, and trauma-inducing. And, it won’t change the fact that these voices have been largely dismissed and ignored by the ABA industry and professional organizations.
I wonder how much of our reliance on ABA therapy has to do with the fact that without it, we – as parents and medical providers - don’t know what to do. Autistic kids and parents come to us in distress and overwhelm, and we want to fix it. ABA has been positioned as the tool – the treatment – that we can offer.
As with any medical intervention that carries real risk, and limited benefit we should proceed with appropriate caution and full disclosure of the risks and careful reassessment for possible harm. To do so ethically would require consultation and monitoring from autistic advocates. To proceed in any other way – or in a way that minimizes, negates, or dismisses the real concern of autistic adults around this intervention - is negligent.
There are other options:
- CBT, DBT, mindfulness, and sensory, somatic or movement-based therapies have shown to have incredible benefit in autistic kids and have been largely embraced by the autistic community.
- Less intervention, and more acceptance – especially of stimming behaviors – has also been shown to have incredible mental health benefits.
Before recommending or referring a child to ABA therapy a careful discussion of the risks and benefits is warranted. Medical providers should also remember that the ABA industry was estimated at 3.8B in 2023 and these services and the studies that support them have been well marketed by industry leaders.
Early intervention does not equate to ABA. Early intervention means targeted supportive therapy at a young age to assure critical developmental milestones aren’t missed – that is not the controversy. Early intervention is vitally important and some of the documented benefit of ABA therapy is likely not related to the therapeutic technique, but by the immense benefit of an therapeutic intervention from a kind and deeply caring human.
Imagine the benefit that 20-40hours a week of neurodiversity affirming support might have!