The second part of our series for Autism Awareness month features Dena Gassner with a clever twist on awareness and acceptance from a personal point of view.
Awareness at the Key to Self
When we think about Autism Awareness Month, we often think about Awareness as an outside force for assistance. But for me, the most impactful “awareness” has come with introspectively coming to “awareness” and “acceptance” of my own autistic identity.
For most of us, we develop suspicious inklings about our identity in an isolated circumstance-we don’t know other autistics, we may not have heard about it or our only exposure to it may be from media that seems to like the visibility of a more “male” presentation, wherein the features of autism are more externalized and notable. However, many autistic women have been socially conditioned by virtue of gender to contain our features so the autism is more internalized. Regardless, the autistic mind is present and in need of understanding.
My diagnosis was a tiny, nearly insignificant step in my awareness. Pathological medical model content on that report did not sound hopeful or give me any “real time” understanding when I most needed it. In the 20 years since my diagnosis, it has been the immersion in my family of choice-the autism community-that has most helped me mirror my experiences and develop understanding of self; to create language and conceptual framework around my identity such that I can not only explain my autism to others, but largely have been able to explain it to myself.
As one example, I would go to therapists for years weeping profusely and expressing my extreme shame around a lack of organization. At one point, I felt my language so inadequately conveyed the intensity and consequences that I took photos to the provider’s offices, head down, quietly and tearfully sliding the images across his desk in hopes that he could help me in any way. It was the lowest point in my recovery (not out of autism, but into it!)
Now, thanks to my relationships with my autistic peers and allies who are genuine “whisperers” I can instead express, “I have working memory problems which mean that unless it’s right in front of me, the item/task/deadline does not exist. This happens with electronic and physical items. Also, while my passion for achievement is intrinsically motivated (sometimes to perfectionism) my capacity to execute is extrinsically motivated by deadlines.” This helps others to better understand my needs and is the foundation for my own agency and self-advocacy.
Diagnosis alone is NOT the answer. It’s the first, tiny baby step to a process I call “Integrating the Diagnosis” (https://www.youtube.com/watch?v=9O7iN05ze2c)
- What is autism?
- How do I experience autism?
- How do others experience my autism?
- What words, scripts, tools can I develop to bridge the gap in understanding myself?
- What words, scripts, tools can I develop to bridge the gap in understanding with others?
- How do I use this self-awareness to identify accommodations, modifications and supports to help me maximize my success and achieve my dreams and goals?
- Where do I secure a second person/support to aid my productivity?
- With this foundation of self-awareness, how do I narrow my focus to take meaningful action toward my goals?
I have taught nearly 100 persons how to execute this process. In my practice as a social worker, my focus is on helping autistic persons post-diagnosis, to ‘integrate’ their diagnosis such that self-awareness and understanding is present and available in real time. We need to be able to say, “Ah, this is my autism-what strategies and go-to tools can I use RIGHT NOW, to resolve this situation?” The diagnosis alone is insufficient, yet, few to no programs actually provide that support in integrating the diagnosis in real time for real change.
This protocol is logical and sequential which can be helpful for autistics. It does not involve criticism, but insights through concrete feedback. It’s reality based and while shame and trauma may surface, executing this process with positive reinforcement of the person’s past achievements can make this doable and instrumental in building strengths based approaches for life.
I am autistic, disabled AND intelligent. I can hold multiple capacities and identities in my intersectional being. But now that I have a personal framework of self that incorporates my autism and the needed language/insights to achieve, my awareness has shifted to action. Action I am grateful to finally be able to act on even if I am also now intersectional with aging! That’s a smile coming your way—-