The opening words of David Winston's lecture hit me like a punch in the stomach.
It was the fall of 2013, and I had only been "out" as Autistic in my professional life for a short time, and was still figuring out the implications of understanding and embracing my neurobiology. Perhaps I should have known that a workshop called "Autism Spectrum Disorders and the Search for Answers" was going to treat me as a problem to be solved, another puzzle piece, rather than as a person to be engaged and understood. Maybe if I had known I would have found language that day, found a way to be able to respond directly to the things that were being said and implied about people like me. But I was caught off guard and felt afraid of confronting a widely respected elder in a place where I didn't know if I could count on anyone else for support, so I bit my tongue and held back my tears and pulled myself together in time to teach my next class.
Now, two years later, I have the same sick feeling in my gut that I had that afternoon, as I see that the journal published by the same organization that sponsored the conference where Winston delivered that lecture, the American Herbalist Guild, has published an article on Autism by another prominent herbalist who sees my neurobiology as a pathology. K.P. Khalsa's article is gentler than Winston's lecture, and his interest in Autism is clearly inspired by his love for his Autistic adult daughter, but it is still firmly rooted in a paradigm that presumes that there is one correct way for human nervous systems to develop and operate, and that the goal of medicine should be to make Autistic minds and bodies less Autistic.
Tonight, I have words to speak. And they are directed not just to Winston or Khalsa or the AHG, but to the entire herbal community. It is time for everyone to learn and understand some important things about Autism:
1) Autism is not a disorder.
Autism is a natural variation in human neurobiology that has existed throughout the history of our species. As Autistic scholar, Nick Walker, writes:
"Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.
"Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological 'operating system' than non-autistic individuals."Neurodiversity -- the diversity of neurobiologies -- is as essential to the health of a culture as biodiversity is to the health of an ecosystem. Traditionally, in many cultures, people whose modes of perception varied from the majority's were recognized and trained as people who could be seers on behalf of their communities and intercessors with other-than-human realms. This culture has treated only one form of perception and sensation and processing and communication as permissible, and as a result is now enduring a crisis of vision as it confronts human and ecological catastrophes.
Oh, and there is no such thing as an "Autism epidemic." The increase in the number of Autism diagnoses in recent years is the result of changes in diagnostic criteria, and was accurately predicted by those who wrote those criteria.
2) Attempts to "prevent" or "cure" Autism are, by definition, expressions of eugenics.
To speak about eliminating a genetically-based variation in the biology underlying consciousness is to speak about eliminating a way of being, a way of seeing, a way of feeling. As one of the people whose existence some of you would like to prevent our cure, I read such expressions to be declarations of war.
3) "High function" and "low function" are inherently oppressive concepts.
What we are supposed to be "functioning" as is as economically productive members of society. And as people who act enough like neurotypical people to avoid making other people uncomfortable with our presence. Categorizing us as "low functioning" or "high functioning" dismisses both the beauty and genius of the minds of Autistic people who don't speak or don't hold jobs or can't still their hands and the struggles of Autistic people who can do those things, but sometimes only at great cost to our health, who still face stress and trauma related to the difficulty of navigating a society shaped by and for non-Autistic people.
4) No understanding of Autistic health is complete if it doesn't integrate an understanding of the biological and psychological impacts of trauma and chronic stress.
To be Autistic in this culture is to live in a world of physically painful sensory overstimulation, where we are subjected to social norms that demand that we suppress our natural expressions and perceptions, and where we are marginalized and pathologized. As people whose experience of the world is inherently intense, we are more vulnerable to trauma than many others, and living in a culture of enforced neurotypicality is universally stressful and frequently traumatizing to Autistic people. Other people's failure to understand, and hence empathize with, and our difficulties in navigating relationships with people whose modes of perception and communication are very difficult for us to understand also make us more likely to experience physical, emotional, and sexual violenc than the general population.
Many of the "symptoms" and "co-morbidities" associated with Autism -- anxiety, depression, digestive disruption, dysautonomia, hypertension, autoimmune disease, asthma, allergies -- can be caused or exacerbated by the neuroendocrine disruptions caused by trauma and chronic stress. Complex Post Traumatic Stress Disorder should almost always be investigated as a potential factor in our health problems.
5) Our "symptoms" are differences with the majority of the culture, not problems to be solved.
Let's take a look, if we must, at the official diagnostic criteria for Autism.
We are said to have "persistent deficits in social communication and social interaction" because we have trouble recognizing social cues and adhering to social norms and we display "abnormalities in eye contact and body language or deficits in understanding and use of gesture." People claim that we can't read body language well -- but it turns out we read each others' body language and facial expressions quite well, we just have a hard time relating to the body language and facial expressions of non-Autistic people. But, you know what? Non-Autistic people have a harighly restricted, fixated interests that are abnormal in intensity or focusd time understanding our nonverbal signals. And most of us do way better understanding the signals sent by non-Autistic people than Autistic people do understanding the signals we send. One additional "problem" we have: when there is a discrepancy between someone's words and gestures, or between their outward communication and their presence, we often don't know which signals we are "supposed" to believe and end up responding in ways that are more honest than polite.
As for our other "symptoms":
"stereotyped or repetitive motor movements, use of objects, or speech" - aka stims - represent our attempts to create a single stimulus strong enough to drown out the flood of sensation being carried across our nervous systems in order to ground ourselves in overwhelming situations . .
"insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior" is another way of managing overwhelm in environments crafted by and for people with dramatically different from ours . . .
"highly restricted, fixated interests that are abnormal in intensity or focus" are passions we follow deeply enough and doggedly enough to discover patterns and possibilities no one else ever perceived . .
"hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment" means we respond to sensory stimuli in ways that are different from the majority of the population.
None of these are "symptoms" to be treated.
6) Nobody else can speak for us.
Non-Autistic family members and friends and partners of Autistic people have their own experiences of the world. Some involve frustrations and challenges communicating and collaborating across a neurological divide. Some involve compassion and solidarity with Autistic people. Some involve really fucked up ideas about how they wish we were different or wish we didn't exist. They can speak for themselves. They and their organizations cannot and do not speak for us.
7) We have good reasons to be wary of "natural" and "alternative" healthcare providers.
There are a lot of Autistic herbalists. And there are a lot of non-Autistic herbalists who support Autistic people in compassionate ways. But there are also a lot of herbalists and naturopaths and people who look and sound to all the world like herbalists and naturopaths who go around talking about preventing and curing Autism. There are a host of cruel and bizarre Autism treatments advocated by people who call themselves alternative or natural health practitioners -- eg bleach enemas. And the natural health community as a whole, and the herbal community in particular, have been major vectors for the transmission of toxic myths about Autism. So don't be surprised if Autistic clients are a little nervous and hesitant at first.
Still want to work with us? Great! Learn more about our lives by reading Autistic writers (and good allies like Steve Silberman.) And then come meet us from a place of openness, curiosity, kindness, and respect, and wll will go well!
