Looking At Autism Through The Lens Of Trauma Theory
Last Month the National Institute for the Clinical Application of Behavioral Medicine offered a free broadcast of their new Advanced Master Program on the Treatment of Trauma because they believe that the latest research and developments in this field are so important that they wanted to make it available to as many people as possible. Nearly 47,000 people from 141countries around the world tuned into the five module webcasts that was presented over several weeks. The program included interviews with several of the top leading experts in the field of traumatology. However, much to my disappointment, one of the greatest contributors to this field who pioneered viewing trauma through a compassionate, humanitarian perspective, Dr. Gabor Maté , was conspicuously not included among the panel of NICABM’s experts. The program is designed to train clinicians, but the material is accessible to anyone, so laypeople, teachers, clergy, etc. also attended. This was a really great thing for NICABM to offer for free at this point in history when our country has just experienced the most polarizing, traumatizing four years followed by a worldwide pandemic.
I feel that NICABM’s program would have been very much improved and could have had a far greater impact if they had included the autistic experience (which is inherently traumatizing) in their scope. I wish they had included the works of Gordon Gates (author of Trauma, Stigma, And Autism: Developing Resilience And Loosening the Grip of Shame) and Dr. Gabor Maté , who pioneered Compassionate Inquiry and who specializes in childhood developmental trauma and its potential lifelong impacts on learning, physical and mental health, including autoimmune diseases, cancer, ADHD, (which also has implications that apply to autism), addictions, and a wide range of other conditions. Dr. Gabor Maté also authored four bestseller books which can be found at: https://drgabormate.com/book/
The autistic experience is, in itself, traumatizing because we autistics have to live in a society that is not compatible with our neurology, we are stigmatized due widespread misinformation surrounding autism, and because our impaired social engagement system makes it very difficult for us to achieve attunement with others. When this failure to achieve attunement happens to autistic children at a very young age, and if their parents do not understand about autism, it impairs the ability to form secure attachment. (For a quick explanation of John Bowlby’s Attachment Theory please view the following video: https://www.youtube.com/watch?v=WjOowWxOXCg&t=247s). In an interview where Dr. Gabor Maté talked about his book Hold On To Your Kids: Why Parents Need To Matter More Than Peers he asserts the importance of the presence of non-stressed, emotionally available, attuned parental caregivers to the physiological development of children’s key brain circuits that deal with stress response, emotional self-regulation, impulse control, attention, and recognizing social cues (all of these things happen to be characteristic deficits of autism, but Dr. Matte is just referring to children in general here). He asserts that today’s modern society and media influences effectively destroys the emotional parent-child attachment owing to economic pressures, birthing practices that separate mothers from their babies, societal trends like bottle feeding instead of breastfeeding, and short maternity leaves. (Dr. Matte contends that a nine month maternity leave would be developmentally appropriate). He then describes how this destroyed attachment in the formative years results in “all kinds of dysfunction, mal-development, and behaviors that manifest severe emotional losses which are typically mistaken for behavioral problems” when the child is older. Dr. Matte says that by treating this relationship issue as a behavioral issue, “by trying to stop the behavior we make the problem worse because we end up punishing these kids and attacking them and further eroding their relationship with us and their trust in us.” As I listened to Dr. Matte describe this phenomenon I was struck by how much it resonates with the autistic experience. He paints quite a bleak picture, but it is even bleaker for us autistics because in addition to all of this we also have to contend with environmental/sensory issues that no one else experiences (and therefore do not acknowledge our struggle). So our relationships with our adults (and peers) are even further eroded because we are punished and harassed (or bullied) for our natural response to the overwhelming sensory stimulation. We are even prevented from doing the natural coping behaviors that we do to try to cope with sensory overwhelm in order to make autistics “indistinguishable from peers.” This is essentially the goal of Applied Behavior Analysis (ABA) which is still considered the “gold standard” for Autism “treatment” despite the fact that it has no scientific basis to back it up and despite the protestations and testimonials of thousands of autistic adults (who have undergone this “treatment” as children). These individuals claim that ABA is damaging, abusive, even traumatizing, and that it “grooms” one for a lifetime of being victimized by predatory relationships because ABA trained them from an early age to ignore their natural inclinations and means of self-regulating their emotions and their nervous systems in order to appease others, to the detriment of their own mental well-being and sense of self. Subjugating their own needs and well-being to appease others resulted in becoming disconnected from themselves. (For more information on this please refer to the list of blog links below). Consequently, Dr. Gabor Maté defines trauma as “disconnection from the self.”
I commend NICABM for including in their lineup of traumatology professionals Dr. Thema Bryant Davis, licensed psychologist, ordained minister, and podcaster who specializes in womanist psychology and bringing healing to marginalized communities. Her discussions on “Erasure” and W. E. B. DuBois’s “Double Consciousness,” also resonate strongly with the autistic experience. Double Consciousness is “the internalized conflict experienced by subordinated groups in an oppressive society.” Jenara Nerenberg does an excellent job of describing this phenomenon that is experienced by neurodivergent populations in her recently published book, Divergent Mind: Thriving in A World That Wasn’t Designed for You in her discussion of masking during job interviews: “As neurodivergent individuals, we are almost constantly having to hold two realities simultaneously, because we pick up on so much external stimuli and have the repeated unfortunate experience of having our ways of interacting shunned and rejected.” Dr. Bryant-Davis explained “Erasure” as the feeling that the wholeness of a person is the sum total of what others think of them: “Erasure is interpersonal trauma that creates a narrative that you do not matter, that your voice does not matter, that your body does not matter, and that your needs and wants do not matter.” These are common sentiments expressed in online autistic only support group spaces, often citing ABA “therapy” for the reason they feel this way. They have been constantly given messages that they are inappropriate, incorrect, or that their natural instincts are just plain wrong; essentially training young autistic’s into a lifetime of erasure. (Thousands of individuals in the autism community decry ABA, however because of the pathologizing view the psychology profession has of autism and the death grip that ABA lobbyists have on their income stream, our voices are ignored...which is just another form of erasure)! Our marginalization can be traced back to the fear mongering and widespread misinformation Autism Speaks has disseminated since 2005 in its efforts to exploit millions of dollars in charitable donations from a well-meaning but uninformed public. (Less than 1% of their eighteen million dollar 2017 annual budget actually went help autistic individuals. See for yourself at: https://www.autismspeaks.org/sites/default/files/2018-08/2017-annual-report_0.pdf). Autism Speaks used the millions of dollars they raised to create expensive TV ads that trained the general public to view autistic individuals as tragedies incapable of contributing to society and autism as a child-snatching, family-destroying villain to be feared. Thanks to the mass character deformation this greedy organization perpetrated, autistic adults are oppressed and disenfranchised from society because this horrible reputation makes it impossible for us to find gainful employment that is challenging and fulfilling for us because society underestimates us and employers are prejudiced from considering us as viable job candidates. Prior to 2005, autistics went unnoticed and unhindered in their attempts at finding gainful employment. Many of these individuals gravitated to Tech High Schools and other such hands-on, small class size training programs or they became entrepreneurs. The autistic community is also marginalized simply due to the facts that our disability is invisible and that we are in the minority, (and society is designed to suit the neurological makeup of the majority): According to the Social Model of Disability, systematic barriers, derogatory attitudes, and social exclusion make it difficult for individuals with impairments to attain their valued functioning. If autistic people were in the majority there would be less noise, less crowds (no giant box stores), no harsh, artificial lighting, nature would be incorporated into building designs, and job interviews would focus on skills and abilities instead of personality matches (performance prioritized over social ease).
Stephen Porges’ Polyvagal Theory, which describes how the nervous system regulates emotion, social connection, and fear response in terms of different nervous system states also applies to the autistic experience. (For a quick introduction to the different nervous system states see: https://www.facebook.com/groups/1015628291826263/permalink/3441227522599649/). We in the autism community struggle with both our nervous system regulation and our emotional regulation and we experience a great deal of social anxiety and novel situation anxiety. These things present challenges to our ability to experience social connection, especially when what others observe about us is misunderstood or interpreted through the lens of neurotypical (NT) experience. (It would be so helpful if people would understand that it is like a cultural difference; just as you cannot achieve diplomacy and avoid misunderstanding by imposing one culture’s norms on another, the same holds true for NT and autistic interactions). It seems to me that Polyvagal Theory and the autism community are describing the same phenomena, but they each have given their own names or terms to describe them. Perhaps we in autism community are shooting ourselves in the foot by using esoteric terms that mean nothing to anyone outside of the autism community and we would do well to adopt the trauma informed terminology. After all, communication difficulties is one of the core challenges of autism, so why further complicate it by using esoteric terms that can be readily misunderstood? Especially when the misunderstanding thwarts being able to receive much needed support? For example, when our nervous system becomes dysregulated the term that is used to describe that phenomenon within the autism community is “melt-down.” However, most non-autistic people equate “melt down” with “temper tantrum,” which is loaded with judgement and thus fosters the antithesis of support. Similarly, we in the autism community refer to that brain and body exhaustion that we experience for the day(s) following a lot of social activity as a “social hang over” (which has nothing to do with imbibing of intoxicating substances). However NTs only hear the “hangover” part and assume that it is due to poor choices and poor self-control, so they have no understanding, no compassion and only judgement for us. (In trauma informed communities, this same phenomenon is referred to as being in dorsal vagal state). “Spoons” is another example of an esoteric term used in disability communities (we actually borrowed it from the chronic illness community, specifically Christine Miserando’s Spoon Theory). What we mean by “spoons” is personal bioenergetics resources (which is a term from Social Baseline Theory), and it basically refers to units of energy and describes the concept that an individual only has so much energy to spend each day. People with autism or chronic illness/chronic pain are not privileged with unlimited energy, so they must be conscious of every decision they make and the impact that it will have on their energy resources. For people on the autism spectrum with sensory sensitivities, being able to predict and control our use of our “spoons” is impossible because unpredictable things like emergency sirens, loud music, crowded spaces, or even a traffic jam can rob us of all of our “spoons.” Another term we in the autism community use that is getting misunderstood now during this pandemic is “Masking” which refers to the phenomenon of suppressing one’s natural inclinations and means of self-regulating their emotions and their nervous system in order to appease or be accepted by others. For example, stifling the need to stim or the urge to curl up in a fetal position and rock when the sensory environment is too overwhelming. (By the way, “Masking” cost us a lot of “spoons”)!
Dr. Porges’ original research focus was actually not about the study and treatment of trauma, it was actually focused on providing a plausible neurophysiological explanation for several of the experiences described by individuals who have experienced trauma. But Pat Ogden, Peter Levine, and Bessel van der Kolk, clinicians who do study and treat trauma, became very interested in the implications and insights of Polyvagal Theory and they helped to influence Porges work to being more about actually helping people (rather than his original path of theoretical research). This is how Dr. Porges came to participate in NICABM’s programs. I am very excited about this because I see it as a very encouraging sign that professionals from different fields of study are starting to collaborate with each other, and hopefully it won’t be long until they start to collaborate in regards to the understanding of autism. This in turn, should hopefully lead to the development of more appropriate, humane, and helpful therapies that do not include conversion therapy. Unfortunately, the lived experiences of autistic individuals historically has not been given credence because autistics are not considered “professionals” and this is why effective changes in the understanding and “treatment” of autism that would actually improve the lives of autistic individuals is so elusive, because it is left up to people to whom it is only an academic exercise. But how can effective solutions be generated by people (NTs) who do not have any first-hand knowledge of the autistic experience? This is why the autism community’s motto is “Nothing about us without us.” We are still awaiting the day when the psychology profession stops erasing us by pathologizing autism and ignoring the voices of actually autistic individuals. Dr. Stephen Porges gives me hope that the wait may not be long now.
Links to blogs written by actually autistic adults who decry ABA:
https://www.tandfonline.com/doi/full/10.1080/23311908.2019.1641258
http://www.thinkingautismguide.com/search?q=ABA
https://www.quora.com/Why-do-people-experiencing-autism-hate-ABA-Applied-Behavior-Analysis
https://autisticmama.com/big-deal-aba-therapy/
https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/
https://stopabasupportautistics.home.blog/2019/08/11/what-do-autistic-people-think-of-aba-therapy/
http://unstrangemind.com/aba/
https://awnnetwork.org/my-thoughts-on-aba/
https://aprenderaquererme.com/2019/12/02/evidence-based-practices-and-aba/?fbclid=IwAR2t3_ng3JeFgwiXuf9UyaJYwK8ecmmwp4gW1ADAdkviYMr1u7UBD2volkY
Michelle M. Baughman is a late-in-life diagnosed adult on the autism spectrum, an educator, a parent of a twice-exceptional child, and a trauma-informed AANE Certified AsperCoach who provides intensive, highly individualized coaching to individuals with Asperger Syndrome (AS) and related conditions. Michelle ascribes to the Neurodiversity paradigm and writes to help debunk the general misconceptions surrounding this condition to help autistics live their best lives and to change the negative cultural narrative about autism. She may be contacted via email: [email protected], or her online presence: http://linkedin.com/in/michelle-m-baughman-28b5a92b
https://www.facebook.com/groups/1015628291826263/
https://www.alignable.com/storrs-mansfield-ct/personal-evolution-life-coaching-2