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Ingredients of Self-Advocacy

Exploring Neurodiversity Podcast – Episode 30

by Adina Levy

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Play. Learn. Chat - Exploring Neurodiversity Podcast Logo

Self-advocacy is not as simple as just learning one skill or one isolated thing. In the neurodiversity affirming world and in the therapy world, we love talking about self-advocacy, but what is it and how do you get there?

I like to think of the components of self-advocacy is being broken up into four main sub parts:

  • Supportive Environment & Community – Safe people and spaces that encourage, believe you, facilitate and offer support
  • Self-awareness of Needs & Preferences – You need to be aware of what you like, need, and don’t like or don’t want
  • Self-worth & Confidence – You need to believe you’re worthy of support, and feel confident and secure enough to ask for what you want/need
  • Ability to Communicate – You need to be capable of communicating your preferences, choices and protests in a way that others around you understand

In this episode, I outline what each of those parts are, why they’re so important. And some ideas and examples for how this can look in practice.

Keep learning with me!

Register for the Communicate and Connect Webinar Series for Professionals who support Neurodivergent Children: https://playlearnchat.com/c-and-c 

The 3 webinars in the series are:

  • Responsive Relationships: Communication Strategies for Professionals to Connect with Neurodivergent Children
  • Collaborative Connections: Coach and Communicate with Carers & Teams of Neurodivergent Children
  • Supportive Spaces: Creating Inclusive and Accessible Environments to Support Neurodivergent Children in their Communities

 

 

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Transcript:

Welcome to the Exploring Neurodiversity Podcast for adults who support Neurodivergent children. Whether you’re an allied health professional, medical professional, education professional or a parent of a Neurodivergent child, you are welcome here.

This podcast is recorded on the Aboriginal lands of the Gadigal and Bidjigal people. I acknowledge the traditional owners elders past and present, and I extend my acknowledgement to any Aboriginal first nations people listening in.

I’m Adina from Play. Learn. Chat. I’m an autistic ADHDer, a speech therapist, professional educator speaker, and I also support Neurodivergent Business owners in my other business, neurodivergent Business Coaching and Consulting.

I’m obsessed with creating a world when Neurodivergent people are understood, embraced, supported, and celebrated. A world where we Neurodivergent people can understand ourselves and thrive in a life aligned with our individual strengths, wants and needs.

On the Exploring Neurodiversity Podcast, you’ll get my perspectives and conversations with my Neurodivergent friends. All about how adults can best support Neurodivergent children in our lives.

I bring a Neurodiversity Affirming approach and indeed a human affirming approach to the support that we all provide for Neurodivergent kids in our lives.

Let’s dive in.

 

Self-advocacy is not as simple as just learning one skill or one isolated thing. In the neuro diversity of farming world and in the therapy world, we love talking about self-advocacy. And building children’s capacity full of self-advocacy, but what is it and how do you get there? I like to think of the components of self-advocacy is being broken up into four main sub parts.

And in this episode, I’m going to outline what each of those parts are, why they’re so important. And some ideas and examples for how this can look in practice.

But first, what is self-advocacy?

quite simply self-advocacy is the ability to communicate or request the things that you need and want.

If I put my hand up in class and ask to open up a window because I’m feeling a little bit hot. That is self-advocacy.

If I tell my parents that I’m hungry and I need a snack. That is self-advocacy.

If I’m a baby learning to eat solid as my baby is right now, and I have a little bit of motor control. And I continually swipe food off the table. That is self-advocacy that is communicating in a way without words, which is absolutely valid. Communicating a message that I don’t want this stuff right now. However rewind a few weeks.

And if she was swiping that food off the table, It probably wasn’t self-advocacy it was probably more random motor movements.

If I tell another person. Ah, who I work with that I don’t really like the way that they spoke to me in a meeting that is self-advocacy.

So keeping in mind that, oh, communication is valid and self-advocacy doesn’t happen. Three spoken requests only.

It’s really about a person, intentionally sharing a message about what they want or need in their life to feel good and to feel okay, to feel safe, whatever that might be about.

I have a visual that goes along with this concept and I’ve shared it on my Instagram lately. And that you hopefully will be able to see this in the show notes.

I think it does depend where you’ll be viewing this, but also know that if you go to playlearnchat.com/podcast-30, 3 0 as in this episode number. You will actually be able to see that visual there.

And I’m going to describe it for you so you can put it in your head. If that is something that will work for you.

So the visual that I want you to imagine is a circle. And inside that circle is a triangle kind of pyramid shape. And it’s split into three segments vertically. So there’s a, if you know, Maslow’s hierarchy of needs, it’s that kind of idea. There’s like a bigger horizontal chunk at the bottom and then a medium chunk of that triangle pyramid, and then little pointy tippy top of that pyramid. All of that triangle lives within the circle. What are these parts?

Each of these parts represents what I believe are the key ingredients of self advocacy.

The circle around the outside is labeled supportive environment and community people don’t exist in an isolated bubble of self.

We live within a network within a context within an environment, obviously, and, and many environments too. So we kind of have many contexts and environments and people that we interact with.

So all of that is represented by that outside circle that says supportive environment and community.

I’ll give you the other labels and then we’re going to go into each one in a little bit more depth.

Now coming to our triangle pyramid shape in the middle, the base level is self-awareness of needs and preferences. Meaning an individual first needs to know what they like and what they prefer and what they need. That is one piece of our self-advocacy pie before. Want to call it that.

The middle piece is self-worth and confidence.

This is referring to the understanding or the belief that you are worthy of support. You are worthy of being helped. You are worthy of something better than your current situation.

And finally at the tippy top of our triangle slash pyramid thing, we have ability to communicate. And again, reminding you, this is not just about spoken words.

This is the ability to show you a message in any way that the people around you will understand.

And so the people around you, they are encompassed in that circle around the outside, that supportive environment and community, they are part of the community.

Okay. I hope you’ve got that in your mind now. So we’ve got supportive environment and community. Self-awareness of needs and preferences self-worth and confidence, and the ability to communicate.

So these concepts is something that I will teach on, a lot more in depth in my upcoming webinars series, it’s called the communicate and connect webinars series.

But as I develop ideas and examples, I definitely want to share them with you with the beautiful hundreds of people who listen to these podcast episodes.

Thank you for being here. I don’t want to just keep it all behind a paywall, but I do want you to know that there is space for you to keep learning more with me. If these concepts are important and helpful, and you are ready to delve into more professional learning around these topics.

In the communicate and connect webinar series, I’m talking about three aspects of communicating and connecting with Neurodivergent children that you support, whether you are an allied health professional, a medical professional, or an education professional, either in early childhood education or in the school system.

the communicate and connect webinar series is starting with the first live on, on the 22nd of April. And you can actually access all three of them at any time, whether you prepay and you can join the live ones, or you can watch them later on the recording.

If you are listening anytime before the 10th of April 2024 in Sydney time, 2:00 PM. You can access early bird pricing. If you register for the webinar series, uh, the link for that is playlearnchat.com/c-and-c that’s. The letter C for communicate and the letter C for connect. So, uh, you’ll find it there.

Also, the link is in the show notes. So don’t feel you have to remember it. Just pop into the show notes, tap it and go and check it out. That is how we can go deeper into topics like this. And really thinking about how you can put into deep, deep action and practice, how you connect with the Neurodivergent children in your care. How you collaborate with the teams around them, the families, the carers, the other professionals in their support teams. And how you can check their environments to be very inclusive and accommodating for Neurodivergent children’s needs.

That is what the webinar series is all about.

And you’ll hear these concepts around, self-advocacy pop up all throughout it. So that’s why I’m super, super stoked and excited to share this with you today. Let’s dive into what each part of it looks like and what it means a little bit more.

So supportive environment and community.

This pace of the self advocacy pie is all about recognizing that we exist in a context. And the way that we live in our world depends on how we are perceived by the people around us. How the physical environment around us is set up to support or not support us.

And I love talking about this first, because I think very, very often this is an afterthought and I am trying to flip this on its head.

This is a huge aspect of neuro-diversity affirming, supporting care. Is to consider that rather than changing the individual. We want to change the world around them. So here we go. Let’s focus in on the world, around them.

One way that the supportive environment and community can facilitate self-advocacy is by simply removing or reducing the need for self-advocacy because at the outset, things are set up in a way that are most supportive for a Neurodivergent person.

The second predominant way that a community, especially the people around and you’re a divergent child.

Can.

Facilitate self-advocacy.

Is in how they respond to the Neurodivergent persons bins for self-advocacy. So when somebody does advocate for themselves and either share something that they want more or less of or different.

How tuned in is that person in their environment to. Pick up on that communication. How much does that person believe then you’re a divergent individuals needs.

How willing is that person to actually make changes to how they communicate or what they’re doing or what they provide as supports for the Neurodivergent person.

Each of us, whether we on your division or not, can all be part of this, we can consider how we support all the people around us. Let’s be honest. I love particularly talking about how to support Neurodivergent children, but of course, these concepts apply to anyone.

How can you set up a physical environment and an emotional environment where you are preempting, what somebody else might need and want?

And if somebody does share something that they want with you let’s say they want a little bit more quiet or they want a little bit more space in their weekly schedule to go and do walks.

Can you dial up how willing you are to listen to them, to believe them. That’s important for them to honor that request and to support them, to make it happen.

In terms of the physical environment. This is pretty much the whole content of the third webinar in my series.

Which is called supportive spaces where I’ll be sharing guidelines, all about setting up physical environments and also digital environments that can facilitate communication, safety, engagement, all of those things. That can support somebody to feel much better and more comfortable.

because it is such a burden for a Neurodivergent person to always be the one seeking support and asking and asking and asking, and really the best help that the world can give to a Neurodivergent person. Is by being wonderful and just the kind of environment that they need in the first place.

And therefore reducing the need for actual self-advocacy to occur, which takes energy. It takes emotional energy. It takes social entity. It’s a really onerous thing.

So I think I might step off my soap box about how important it is to have a supportive environment and a supportive community. Because I have hours ahead of me where I get to share lots and lots on those topics.

So the three more internal ingredients of self-advocacy that happened within an individual. You first need to be aware of your needs and preferences. Think about yourself, whether you are near a divergent or not.

Think about how much you know about your sensory needs and your sensory preferences. And whether that fluctuates.

If you don’t know, what are the sensory triggers that make you feel uncomfortable or on edge, or just not feeling your best? Then you can’t do those later steps to actually make a change in your world so that you get more comfort and less discomfort. I’m just using sensory preferences. As an example here. It could be anything at all, but what you need to know first is I like this.

I don’t like that right now in this moment, I would like more of this, or I would like less of that.

Once you are aware of what you would like the next step is self-worth and confidence. This ingredient of self-advocacy is all about feeling that woodiness feeling that you are actually deserving of comfort. You are deserving of feeling good. You are.

You are worthy of support and help.

And it’s also very much tied in with your past experiences. So if you in the past have received good feedback and people ready to help you, when you have asked for that support. You are going to be more likely to ask for that support in the future. Of course, the opposite of that is true as well.

If you’ve asked for support or you’ve shared your accessibility needs before, and it’s been met with somebody. Pushing it down, diminishing it, not helping, not meeting your needs. Or laughing about your needs, whatever that might be, you are going to feel a lot less likely or a lot less willing to put your hand up in future and ask for what you need.

And that is completely natural and also devastating.

I deeply deeply believe that it is your right as a human to feel comforted, supported, safe, connected, and listen to.

You are worthy of support. You are deserving of a comfortable life of a supported life, where you have just the help that you need to do the things that you want to. And everyone around you is as well.

The confidence to do that is, you know, it gets built up over time, but unfortunately it also gets eroded over time, but it’s something to keep thinking about and keep practicing.

And of course, for the little Neurodivergent peeps in your life,

You can help them learn that they are worthy of support and they are worthy of feeling more comfortable and more supported.

And that especially comes in how you respond to their requests, whether they are overt or a bit more subtle as well.

Finally, we have the ability to communicate.

Even if you know what your support needs are and you feel that you deserve that extra support or that slight change in your circumstances?

You then need to be able to share that message with the world around you. As a speech therapist, I spend heaps and heaps of time. Talking about the fact that communication is not just talking.

This links back in with the environmental support. So we want to make sure that every individual has multiple ways that they can share messages in as easy as possible way. So that it’s lessening the burden on them to feel that they have to put together a clear sentence or make sure that their voice doesn’t sound shaky or whatever that might be. In many cases, speaking a request can be a lot harder than sharing our request in a different way.

In some environments, it can be really appropriate to have visuals, for example, in a classroom, it can be really, really appropriate to have visuals that a child can share with a teacher.

And that can be a really simple, low demand way. That that communication can happen, where a child is able to share their message of what support they need.

This is something again, I’ll go into a lot more depth in the communicate and connect webinars series, both in how we communicate with children directly. And also how we set up a facilitative communication environment physically.

For now, let’s just keep in mind that even if somebody has a message that they want to share with the people around them. Uh, asking for more of something or less of something or something to be different.

They may not be able to access or easily use their, let’s say typical way of communicating. So we want to make it as easy as possible and be really clued into watching what that person might be sharing.

Even if it’s in more subtle ways. It could be through their behavior.

And it could be through lack of behavior as well that you might get clues about what that person may need or want to feel safer, to feel better, to feel more capable or to feel ready to participate.

.

Communication ability grows over time and with practice and when support. And certainly speech therapists can help very much in this space. This is what we do. But communication does not just happen one direction. It goes bi-directionally. That means it goes between two people. Somebody is sharing a message and somebody is perceiving a message. So, again, back to the circle around the triangle, it is up to the community around that child to be receiving those messages. And trying to interpret what it is, if it’s not so obvious trying to interpret what it is that that child may want or need, what are they advocating for?

What are they asking for? And honoring that as much as possible that will then feed back to the level below here, their self-worth and confidence. And practice. So they’re more able to actually ask for what they need in the future.

So in my experience, self-advocacy can only happen when you have all of these four ingredients together.

And in the absence of any one part of those ingredients, we just don’t have effective. Self-advocacy somebody may know what they want. They may feel that they’re ready and brave enough to ask for it. But the way that they communicate it, isn’t really understood by the person around them.

Well, somebody may have all of those internal pieces, so they know what they need.

They feel worthy. They feel confident enough to request it. They have the communication skills. The other person understands the message, but doesn’t respond or the environment is not set up in a way that is able to facilitate that request at all.

And then we don’t have effective self-advocacy because it hasn’t actually achieved an end result.

As always, I have tons more. I want to share on this topic and lots of specific examples and tools that you can use in your clinical practice or in your education settings, wherever you are.

I really aim to make it easy for you to actually implement learning. When you join my webinars, I share heaps and heaps. So. Please do consider checking out the communicate and connect webinar series. That’s playlearnchat.com/c-and-c.

And I remember that the early bird pricing is on until Wednesday, the 10th of April 20, 24.

But if you miss that, no worries. You will still be able to access the webinars into the future. So please still come and check it out. And I would love to hear from you if you want to catch me on Instagram.

What’s something interesting or surprising that you’ve learned from this or something that you’re reflecting on that you’ll take into your next week as you work with the Neurodivergent kids around you.

Thank you so much for sharing this space and time with me. Thank you for being open to learning and unlearning and to listening to the perspectives and experiences of Neurodivergent folks.

If you found this episode helpful, please share it with a friend, share a screenshot on Instagram, pop a five star rating and a review in your favorite app. And join me on Instagram and Facebook.

I’m @play.Learn.chat. Have a spectacular day!

 

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