Hi Lynn and Lynn’s community. This is Dr. Neff here or Megan Anna. You can call me either.
Lynn, thank you for your graciousness and understanding re: our miscommunication and then yeah, just my energy spoons being pretty limited for more interactive presentations at this time.
I found it really interesting that we were talking about self-advocacy and then we were negotiating self advocacy through that email.
So I thought I would read an excerpt from my book, Self Care for Autistic People, and then talk a little bit about the self disclosure thermometer, as well as provide a redesigned handout of it that you can give to your community.
So for context, Self Care for Autistic People, is a book that is divided up into short entries meant to be kind of bite-sized so that people can pick it up and then put it back down and take in information as they have capacity. So the excerpt that I'm reading is “Discover the Power of Self Advocacy.” And this is part of the “Boundaries and Self-Advocacy" section of the book.
“The concept of self advocacy may initially seem daunting to you. But it can be as straightforward as requesting a different seat or seeking clarification on a puzzling question.
In essence, self advocacy involves voicing your needs. As an autistic individual, it often falls on you to request the accommodations that enable you to function optimally, in a world typically tailored to the needs of allistic bodies and minds.
The process of self advocacy can be streamlined by keeping the following equation in mind:
Self-Disclosure Plus Request Equals Self Advocacy.
Self Advocacy frequently involves intertwining a disclosure about a particular need with a specific request. While the disclosure part isn't always necessary, this is pairing that morphs into a powerful act of self advocacy.
For instance, I recently found myself seated at a restaurant at a metallic table under glaring artificial lights. The metallic odor proved overwhelming. I asked the server if I could relocate explaining, I have sensory sensitivities and the metallic aroma is making me nauseated. Could I possibly switch to a wooden table? The server graciously complied and I found myself in a comfortable spot with natural lighting and a wooden table.
Other examples might be, “I have auditory processing differences, which makes it hard for me to hear in loud environments. Can we continue our conversation outside?” “I thrive on direct communication. Would you mind elaborating on your feedback so I can better understand how to improve?”
It's crucial to remember that full disclosure is not a prerequisite for self advocacy. Partial self disclosure, such as mentioning sensory differences, auditory processing difficulty, or a preference for direct communication is completely acceptable.
Or you can simply request what you need without an explanation at all, articulating your specific needs and making a request is particularly assertive, and effective self advocacy.
Sometimes jotting down a quick script ahead of time can make the interaction go more smoothly. To practice, reflect on the past week, identify the situations where accommodations would have been beneficial. Using the self advocacy equation, create scripts with scenarios or consider common experiences you have and write self advocacy scripts for those. Practice reciting the scripts out loud. Keep your comfort level with self disclosure in mind and modify the scripts as needed.
Self Advocacy is a powerful tool and like any skill it can be harmed with practice. Don't berate yourself if we stumble in your initial attempts. In addition, there will unfortunately be instances where you might face resistance or misunderstanding. Such reactions often stem from a lack of knowledge about neuro divergence and are not a reflection of your worth or your request validity.
When faced with such responses, reaffirm your worth and remind yourself that you deserve accommodations that allow you to interact with the world. It might be helpful to have a supportive friend or mentor with whom you can debrief and strategize for future instances.
With time you'll notice that self advocacy becomes more natural. And the hurdles less daunting.”
Okay, so that is my entry on the self advocacy equation. I like to simplify things because they can stick to my brain better when they are simplified. So this is where I really liked this equation of self disclosure plus request.
A person doesn't have to self disclose to make a request, but I find that tends to make it a more compelling request.
The reason I created “The Self Disclosure Thermometer” is because people like me with my neurology, we tend to have all or nothing thinking. And so the first time I heard about or read about partial self disclosure, so I was like, “Oh my gosh, wow, this is a really brilliant idea. I mean, it's not all or nothing. It's not saying nothing about myself or saying I'm autistic.”
So I wanted to visualize and have a resource that people could use where they can actually visualize what does it look like to have a partial self disclosure? It is not always safe to fully self disclose. We might not always want to fully self disclose for so many reasons. And so when it comes to self advocacy, I think thinking through
what is the thing I need here to be able to move through the space.
What that need what is it tied to about my experience in the world or about my identity, that I'm comfortable disclosing to this person, and from there, we can make self advocacy scripts.
And there's a...first way I'm gonna take a sip of tea. This is one of the aspects of long COVID I lose my lung capacity quickly. So I'm going to take some tea and take a breath real quick.
So one final thought that builds into self advocacy.
Self Advocacy depends on self awareness. And that's something that a lot of us struggle with, partly due to interoception struggles, so body awareness struggles, alexithymia so difficulty identifying emotions, or if someone who masks and is so kind of has so much experience of cueing into the needs of others, they can have a really hard time knowing what they need. So often, the foundational building blocks of self advocacy is actually self awareness.
And so we can teach skills, there's definitely skills that go into teaching self advocacy, but I would say more fundamentally, is actually self awareness. And that sometimes that is the hardest step.
So yeah, when it comes to self advocacy, self awareness and then building skills and then building confidence through practice, are some of the kind of core ingredients that I think of as going into self advocacy.
There's also a whole system aspect of self advocacy, and that's that's a whole other can of worms, learning how to navigate systems. There's some really great advocates and educators out there who can provide people with a lot of education on how to know your rights and to know how to advocate within systems. That's not what I specialize in. But there's there's some really good people out there.
One resource I really like is JAN. I'll send you a link to that. They have like a directory of kind of recommended accommodations based on they have for all sorts of different disabilities. But then even more so based on like if you have like sensitivities, so that's a great place if someone's just wanting to generate ideas of like, I have access to accommodations for my school, but I don't even know what to ask JAN can be a great place to just generate some ideas of what accommodations might even be helpful.
Okay, I hope that this is helpful to you and hopefully to your community. And I on my podcasts, the queen of awkward goodbyes so very fondly.
Here I am saying an awkward goodbye. Bye!
