Autism Acceptance, Advocacy, and Interoception

A picture of Megan, a white woman with blonde hair, smiling. Her daughter is also in the frame, facing away from the camera.

Hello! I’m Megan, one of the board members at CAYR Connections. I’m an AuDHD (Autistic and ADHD) teacher and parent of a neurodivergent child.

In honor of Autism Acceptance Month, I wanted to take a moment and share some of my story about experiencing the world through my own neurodivergent lens and developing an advocacy lens as I navigated my daughter's transition to Kindergarten this year.

At CAYR Connections, our goal is to normalize neurodiversity. What we mean by that is we want neurodivergence to be seen as a natural variation of human brains, instead of viewing neurodivergent brains as "broken" and needing to be "fixed." Many therapies and school settings for Autistic, ADHD, and otherwise neurodivergent kids are compliance-based, focused on making them fit into the "neurotypical mold" and teaching them to mask their neurodivergent traits. These systems teach ND people to blend in, instead of meeting their immediate needs and encouraging them to self-advocate to get their needs met -- but this has the potential to have long term negative effects on their mental health and well-being.

In my experience, most teachers, therapists, and other providers have good intentions and genuinely want to help. However, the educational and medical systems are steeped in ableism and were created to "help" everyone be as "normal" as possible, which we now know is a harmful goal. It's hard for even the most neuro-affirming people working within these systems to avoid the status quo, neuronormative practices. BUT, when we normalize neurodiversity and the natural variations of brains, there is more room for inclusion instead of assimilation.

Growing up, I was taught to assimilate. I had traits like being “highly sensitive” and I was taught to bottle up my thoughts and feelings in order to safeguard others' comfort, at the expense of my own. I was delayed in my speech and reading, but once I caught up academically around 5th grade, I was expected to keep pace with my peers even though I had to work much harder to do so. I felt intense academic pressure, and it was discouraging to feel like the pressure was killing me while my peers could seemingly manage it easily. Now, I can't help but feel the effects of my own educational trauma when I see my 5 year old daughter being taught to do what the other kids are doing, play like they are playing, and keep up with their neurotypical social standards. If she doesn't comply, she's told she's doing something "unexpected," and is encouraged to make a "good choice."

All of this may seem innocuous but I want to share about the dangers of autistic masking and burnout. This article from the UK breaks it down. To quote Brené Brown, "the opposite of belonging is fitting in." The way I see it, the more that autistics feel the need to mask, assimilate, and hide their autistic traits to fit in, the more it affects their mental health, causing issues like anxiety, depression, and even suicidality.

For me, I didn’t realize I was an ADHDer until I was 20 years old, and I didn’t self-identify as Autistic until my daughter was diagnosed a few years ago. The more I reflected and engaged with the ND community, I realized that my “mood disorder”, clinical depression, anxiety, and eating disorder were the byproducts of Autistic masking. I didn’t know how to ask for accomodations or even what accomodations I needed and schools were, believe it or not, even less inclusive in the mid-late 2000s when I graduated high school and started college. I was a living case study of the cycle of Autistic burnout graphic that you see above.

One big piece of the puzzle (no autism pun intended) is interoception, or the sense of awareness of the body’s signals, like thirst, hunger, discomfort, etc. Early on, I learned how to shut off my internal cues and avoided tuning in to my body's needs -- it didn’t end well. Only recently, since learning more about my AuDHD neurotype, have I learned to identify my body's cues and interpret what they mean. Now, I’m trying to learn the art of self-advocacy alongside my daughter, so that we make sure that our needs are met.

In my daughter's school meetings, I speak a lot about interoception and understanding the autistic perspective, but I still see behavioral approaches being used that teach her how to "fit in." While this may seem benign, my daughter is increasingly dysregulated at school and at home, says that she’s scared at school and afraid of her teachers, cries that her friends don’t like her, and is starting to refuse to go to school -- all signs of burnout from being expected to mask her Autistic traits. It’s heartbreaking for me to see her and worry about her long-term mental health when she’s experiencing these things in Kindergarten.

This article about interoception versus compliance at school explains how we can use a curiosity-based approach instead of coercing compliance. By trying to understand the underlying "why," we can avoid harm from compliance-based strategies. I like this approach because it’s honoring my child’s needs; a focus on compliance feels like gaslighting to me, because I know what it's like to put my needs aside for the comfort of others. Honoring a child’s interoception is honoring their autonomy and supporting their mental health.

I want to share an example of how I’m trying to incorporate interoception and more neurodiversity-affirming principles for my daughter in her general education classroom setting. My daughter recently came home from school with a social story to try to "reinforce desired behaviors" at school. Some of the messages are fair, like don’t knock down other kids’ block tower creations. I like to consult with my child’s neuro-affirming private Occupational Therapist when I’m in the thick of advocacy and trying to pinpoint how to move forward. She pointed out that the social story that school provided establishes ground rules without adding an essential interoceptive piece.

What was missing? Teaching my child to note how her body feels when she’s knocking down the tower. If her body feels fast (that’s how she specifically talks about her regulation) and she doesn’t like how that felt, reflecting on that can help her do things differently in the future. A social story can explain to her how she can work together with a trusted adult to find something else to do if her body feels "fast" when she is playing with toys. This is the interoception piece. It is so important. Instead of shaming a child for a behavior by telling them "other kids don't like that" or "friends don't knock down block towers," an interoceptive approach can empower a child to tune into their needs and find other ways to get these needs met.

I shared some articles about interoception with my daughter’s care team, but my messages still seem to be falling short. I’m hoping that this concrete example with support from our neuro-affirming practitioner will help me educate my daughter’s team. I know they mean well, and are probably overworked and under-resourced, but these are the conversations and paradigm shifts that they need to have in order to support an increasingly neurodiverse population. Translating neurodiversity affirming principles into the education setting is challenging – I found another article to share for tips about how to incorporate interoception into IEPS. Being involved with the CAYR community has been so supportive as I navigate life as a neurodivergent parent to a wonderfully neurodivergent daughter.

Thanks for reading! If you want to chat more, join me for this month's CAYRgiver Circle virtual parent & caregiver meetup on Wednesday, April 16th from 7-8:30pm. We'll be discussing Autistic perspectives with Timotheus "TJ" Gordon, Jr., an Autistic self-advocate. RSVP to receive the Zoom link via email!

Click here to RSVP