- Gonzalo Laje
Understanding Affirming Care during Autism Appreciation Month
April is Autism APPRECIATION Month; we at WBMA say this loudly and proudly. As a neurodiversity affirming practice, we’ve intentionally chosen “Appreciation” over “Awareness” or “Acceptance” an Autistic brain (Check out our earlier article that discusses using identity first language here) is something to appreciate. Join us on April 21st at 9:30 am for coffee chat about supporting Autistic folks in our community by providing affirming care.
What is Affirming Care?
Okay, so, to start: what is affirming care and how is it related to Autism Appreciation Month? At an overview level, care that honors people’s identities–including, but not limited to, gender, sexual orientation, race, and neurotype–is affirming. Since we’re talking specifically about Autism this month, affirming care understands and celebrates the ways Autistic folks process the world as legitimate and awesome. Autistic folks are great because of, not in spite of, their neurotype. Neurodiversity affirming care operates on a few foundational truths:
Autistic folks are not broken or inferior.
Although Autism is classified as a disability, the more precise articulation of this is: Autistic folks are disabled by their environment and the neurotypical norms imposed upon them. Think of the toddler toy in which you match shapes to their respective holes–stars go in stars, squares go in squares, circles go in circles. Experiencing neurotypical privilege as a neurotypical person is being a circle in a world full of circle holes. Experiencing neurotypical privilege as an Autistic person is being a star in a world full of circle holes–a beautiful shape worthy of love and respect…and struggling to thrive when forced to try and fit through the circle hole. Except, instead of shapes and holes, we’re really talking about different approaches to communication, regulation, processing sensory information, and learning.
An autistic brain is as beautiful as any other brain. It is not a problem to be fixed.
Every neurotype has accompanying strengths and vulnerabilities. Often the two are related. For example, some common parts of an Autistic profile are a marvelous facility with recalling details, being observant, and organizing information systematically. The flip side of having a brain that naturally makes logical connections and thrives on synthesizing information to make predictions is that surprises–be it an unexpected trip to Sky Zone or rearranged desks at school–can really throw folks for a loop. They can trigger meltdowns. Non-affirming care might use words and phrases like “rigid,” “demanding,” or “needs to learn that not everything can always be their way” to describe this hypothetical Autistic kiddo. Non-affirming care could look like sitting down with the kiddo and talking through the meltdown with a focus on how it made others feel, how the response was inappropriate, and what responses the kiddo could use next time to be more flexible–shaming the child and leaving the underlying need that caused the meltdown unaddressed.
Affirming care operates with the understanding that “kids do well if they can” (thanks Dr. Ross Greene for that wonderful language!) and their behavior is communicating that they are having a hard time. Affirming care could look like the kiddo’s team reviewing what happened through the intersection of an Autistic lens and neurotypical norms and brainstorming how they could support the kiddo differently going forward. For example, the team might think: We expected her to be happy, because she generally loves Sky Zone. We anticipated excitement and gratitude, but instead, we saw her melting down. Let’s take a step back. We know that a significant contributing factor to her sense of felt-safety is predictability; when something happens that she doesn’t expect, her anxiety goes up, contributing to dysregulation. A dysregulated brain is run by the ‘feeling brain’ (i.e. limbic system), not the ‘thinking brain’ (i.e. prefrontal cortex), so her ability to engage with skills that stem from the thinking brain–like impulse control, emotional regulation, and using her words–are diminished, if not inaccessible, in those moments. Hence the meltdown we observed. Even though the surprise was something she typically enjoys, because it was not what she expected, it was hard for her to transition. Next time, we could support her regulation and her ability to deviate from the routine by a) giving her a heads up that we’ll be going to Sky Zone on her day off so she has time to incorporate it into her mental schema b) supporting the transition by embedding extra time for her to acclimate in the car and at the arena c) having external co-regulators available, such as a low-sensory room, a cold glass of water, and her go-to fidgets.
In the therapy setting, affirming care can be environmental (e.g.being mindful of sensory input and increasing and decreasing it according to patients’ verbal and nonverbal feedback to support regulation, encouraging unmasking and stimming), psychoeducational (e.g. helping Autistic folks learn about their brains, neurotypical privilege, and tools available to them as they navigate a world rife with neurotypical privilege), and approach driven (e.g. intentionally matching the patient’s pace and direction in session, not setting an agenda; asking the patient if they want the therapist to serve as a neurotypical translator; the therapist adopting the role of collaborator rather than arbiter of rightness and holder of answers; presuming competence and meeting the patient where they are).
Affirming therapy activities include discussions around masking, energy allotment planning, resource sharing, trialing and practicing self-care activities, strengths and interests, and a whole host of other activities that convey: “Your Autism is part of you. It is not a problem. I respect you and the way you process the world and am here to support you–whether that is to empathize with the challenges you’re facing in a neurotypical environment or to help you sort through what your options are as you decide which ones are a good fit for you.”
How does affirming care prepare kids for “the real world?”
Many caregivers have been steeped in person-first, deficit-based understandings of Autism. They’ve been told by well-meaning medical and educational professionals that they need to teach their child expected behaviors or else risk their child being excluded from a wealth of opportunities. These caregivers are terrified. They desperately want to protect their child and set them up for success.
As I always do, I want to bring all of this back to the brain. Cues of danger–everything from a loud noise to being told the way someone stimmed or sensory-soothed was unacceptable–activates the continuum of people’s fight or flight response systems. Non-affirming care damages people’s sense of safety–within themselves and in the world. It teaches them to not trust themselves and their insights. That is disgraceful and defeats the purpose of the work we set out to do. Affirming care promotes positive self-concept, self-efficacy (sense of “I can do it”), self-advocacy, and resilience. The “real world” relies on resilience and adaptability–you can’t regularly access the parts of your brain in charge of those skills if you’re chronically dysregulated, which is what happens when care is not affirming.
As a former special education teacher and a current therapist specializing in supporting neurodivergent kids and their families, I have participated in countless conversations with caregivers of neurodivergent children. I can confidently say that caregivers want what’s best for their kids. They want them to thrive–to live a happy and fulfilling life that has purpose and community. Affirming care is an essential component of making that dream a reality.
Part of providing autism affirming care is centering Autistic voices. To find excellent tools and to learn more about affirming care, we recommend the following resources, created by Autistic individuals:
https://notanautismmom.com/2020/07/20/autism-books/ (books with * by their name)
WBMA is here to help. Call us at (301) 576-6044 or email us at firstname.lastname@example.org to schedule a consult today.
Janelle McCarthy, LGPC
Licensed Graduate Professional Counselor