#5 | Barb Avila Q&A

expert interview Dec 09, 2021



  • SEEING AUTISM by Barb Avila 
  • For a summary of SEEING AUTISM and a copy of this transcript, click here.

Lynn Davison 0:13
It is my extreme pleasure today to introduce Barb Avila, who authored this wonderful book, SEEING AUTISM that I call just a great big hug. She writes about it in such a clear way. It's like you're talking to your best friend but she's really knowledgeable. Wonderful resource and I highly encourage you all to to get a copy and read it and maybe even I'm contemplating giving it away for Christmas to a few. [Barb: Thank you, Lynn.] I really do believe that this is is is just a great key to put in the door to open up what's you know what's really beautiful and complex about our loved ones who are on the spectrum. So thank you again, Barbara.

Barb Avila 1:09
I feel honored to be here. Thank you. 

Lynn Davison 1:15
I just love the summary thoughts that you had have, we really need to start first with understanding and, and that like, is a whole world in and of itself and it feels like I can be there for the rest of my life. 

Barb Avila 1:31
I am I'm still there. I live there every day. So yeah, absolutely.

Lynn Davison 1:36
Absolutely. And then the connection piece is all about, you know, how do we best, how do we create an environment where the safety needs are met so that the connection can be made. So the fear factor that really is ever present in our time and our loved ones lives can be at least mitigated somewhat.

And then the final thing is to just keep practicing that partnering that is my mantra now, okay, we're practicing are partnering over and over again and some days. It does feel like you don't make any progress today, but I can tell you that the more progress on this one and more connected.

Barb Avila 2:20
It takes time. In fact, yeah, and so just sorry, for people who don't know that's how, yeah, how how my book is organized is exactly what you just shared.

So I kind of break it down into the first section is understanding the second section is about connection. And then the last part is how have you practice some of the things that yeah, connection and continuing to understand.

We were talking before we even went live about just how understanding is a continual process. Yeah, thank you for that summary.

Lynn Davison 2:54
Well, it's just it really was a wonderfully concise way to get it in my brain. And that's what I'm trying to do is make it make it stick.

And then of course, I wrote the summary and I usually only have one column of great ideas, but with Barbara's book I have two columns of, you know, incredibly good ideas that I need to just keep reminding myself of on a daily basis.

And they really they break down into those three categories, but they're just like one of my favorite ones, the one that pops up right now is aiming for the window of tolerance between chaos and rigidity where we function without fear. Wow.

Barb Avila 3:37
Yeah, well, I mean, that really, I have to give credit to Dan Siegel, who Dr. Dan Siegel and Tina Bryson. They talk a lot about that and their books who I also referenced in mine, but really just the whole idea that people on the autism spectrum are autistic people, as most prefer to be called, are functioning a lot of the time in either a feeling state or a feeling of chaos, like everything coming at them all at once, and how they often will manage that get really rigid, and so there isn't really you know, that flow in the middle is what we all in life are trying for. But people autistic people may not feel that very often.

I have one one of the adults that I serve. I was talking about how do I help someone feel safe? And I was asking his advice and he said some people may not even know what that means. And so helping someone actually, like figure that out.

What does it mean to say when I'm not feeling like I have to control the you know, things that are going to be as predictable as possible, or how do I get out of feeling that flight and that overlying sensory overload.

Lynn Davison 4:53
So what advice did he give you?

Barb Avila 4:59
Really, he said, the first thing that he said was, maybe the conversation needs to not be about safety. But how do you get out of feeling like you're in danger?

Like what are the things that trigger you? What are the things that are making you feel that way? And then how can we calm those down?

So it's just kind of shifting the conversation a little bit to be more concrete, which is pretty common for a lot of conversations with autistic individuals is that we just need to be a little bit more overt and concrete about things

Lynn Davison 5:32
Overt and concrete, so we're sharing what's going on inside of us as so that they understand okay.

And the model that I use is called the STEAR model at the STEAR Map, and it starts with a situation the thought, the emotion, action and the results.

So when I share with Mark, I say, Okay, here's the situation we can all agree on.

And listen, I thought, you're not responsible for that thought. Because you know, I often hear I'm so sorry, you know, for my Yeah. And it's like, you're not responsible for what happens inside of me. You didn't I'm responsible for that part. And, and then we talked about okay, so that makes me act like you know, that's the emotion it creates and then that's how I act. So that's what you're seeing. And the result is either connection or disconnection. I mean, pretty much comes down. Yeah.

Barb Avila 6:26
Well, and just that's a beautiful way of talking about it with autistic adults.

And I think the only addition that I would make, which maybe you already do, but I'm just gonna make it over for the audience to is to make that visual.


Yes. And when I say that, I talk a lot about visual conversations now, of just have grabbing a notebook, you know, and just having a conversation that brings the joint attention together, so you both know that you're talking about the same thing and saying, hey, you know, yeah, the, the parts that we have, you have yours here I have my hair and just showing that can be so powerful, rather than just expecting somebody to auditorily have that picture. In their head. Yeah, that's even just writing down like

Lynn Davison 7:16
this like that. When I coach my young adults, I usually have them I just write down what their thoughts are. And then we walk through and we say which one of those is most interesting to you?

We'll walk through that and see what the result is. Is that the result that you intended? As often? Yeah, it's not the result that we really wanted to create. Okay, so let's do it again. Is are with the same situation. Is there another way of thinking about it? Because there's like 7.8 billion ways to think about it. Yeah, yeah.

We all have like and yeah, that's why it's perfectly okay to have a thought whatever thoughts you have, you know, but we want to practice the ones that work best for connection. In the case. Yeah, we're doing here. So yeah.

Barb Avila 8:00
The way I also look at that, that kind of adds to that I think is I actually can't remember if specifically in the book, it's so much I wanted to write and that I had to like pare it down, but maybe it will be the next book, but anyway, helping somebody with decision making and kind of along the same lines. I'm gonna see if I can connect it for you and for the listeners, as much as I have it connected in my head, but oftentimes, we'll start trying to solve a problem.

Before we've actually helped the person see it as a problem or help them identify what the problem is for them. We go into our neurotypical way of solving problems or you know, going into like this the situation leads or thoughts of that, before actually sitting with what is what is going on, and kind of identify, so it was funny because I used to go okay, we need to do this executive function itself of let's create a plan and then follow through and experiment with it and then try and review it and this kind of cycle and then I went, Wait a second. But if we're doing all that work, the person on Spectrum isn't getting experience with even seeing what the problem is or seeing the problem is for themselves rather than somebody else. Am I making sense?

Lynn Davison 9:25
You're making perfect sense, because what I what I the first step is the thought download. The first step is tell me what what your sense what sentences are are in your brain. And I was scribe the scribe, the scribe the scribe, and if I'm not fair, I encourage them if you can't write fast enough, which is the case for for a couple people that I love that just use a otter which is a way to transport even the text you know the thing on your phone where you can be taught and teach to be accurate scribe for you just say it out loud, but let's get loud so then we can together look at it, you know, stand your thinking and you can you know, and then we can kind of work through that. Yeah. First step or something, like you said, we're solving the problem before we even know what it is. Yeah,

Barb Avila 10:19
exactly. Yeah. And I have to, I have to again, one of the things that I love to do is give credit to people who've come before me and one of those people is Carol gray with social stories, and we've gotten away from the original and a lot of people probably listeners will know social stories, but we've gotten away from her true intention. Her true intention was exactly what we're talking about. Find out first, what is bothering or upsetting or getting in the way for the person at first, and then write the story that's very personal to that situation or that person. We've gotten away from it. Now we have these social stories that are like pre done. And we've got you know, it's like wait a second, that may be what the person is struggling with, but it may not be maybe totally different.

Lynn Davison 11:16
It's often when we when I describe the thoughts that I go, wow, I had no idea. That was the challenge you have in that particular situation. Yeah. Wow. And there are insights we miss. Because they are very insightful people. And they literally, yes, if we don't do that, Oh, wow. There's, you know, there's a way of looking because the people I love and a lot of the people that I coach are so sensitive to the other person. They can oh my gosh,

Unknown Speaker 11:45
absolutely. Just

Lynn Davison 11:47
pinch or feel they and they know because there's so much food, but what's going on, maybe because of that fear thing or that, that danger thing where they're they they're trying to, I don't know, but they really recognize what's going on. And if I and I think I don't feel like I give them credit. Yeah, absolutely.

Barb Avila 12:07
And I think that you know what I hear a lot from people, autistic adults in that I have in the book as well. Is imagine if you did have that ability of being able to really be attuned and understand emotions, meaning that you could identify that someone else is having a reaction to this or whatever, at the same time, and the same kind of priority level as everything else that's coming in including your own emotions, including her own sensory experiences that tag on the back of your shirts as the lights in the room, all coming in at once you're going to just be fronted. And so kind of those, there's two choices that I feel like so many autistic. People have is either totally shut down, and just go I give up. I can't do it. Or to be just hyper vigilant all the time and being able to try and connect all those dots at the same time, which I can only imagine how exhausting that would be. And so what you have is then you have a you know, this exhaust exhaustion that ends up in what's called artistic or an app where I can't do it anymore. I can't pretend and try and mask or camouflage or try and manage all of that all at once.

Lynn Davison 13:28
Which totally makes sense. I mean, yeah, imagine that. And it's just because the brain they got in the genetic lottery, I mean, yeah, the way it is, or I don't know maybe the way it developed, which was also very helpful. When I finally read, you're just some very kind description of why this comes about in infancy where the disconnects happen and the differences, you know, the missed opportunities, creating the cascading effect. Wow, it was like, Oh, I get it now.

Barb Avila 14:02
Yeah, that came out of I mean, I'm kind of a research geek. So I just, like any research having to do with autism in the brain and that, you know, what, what, what does happen and how, I mean, really, it started with me being super, super curious and just different processing that I was seeing, like just processing sensory information differently was just fascinating to me. But then what would happen is that I was going, Hey, wait a minute. Okay. So all of this research is saying that we need to be focusing on I mean, all this research is saying that children, infants are having trouble with attention shifting, this joint attention piece that I talked about in the book, that is really early stuff. But then when we get into service later, we're like working on all these other skill development things. Really. We lose that and how many people have I talked to who I say, Do you know what the core issues of autism are? They have no idea even though they've been diagnosed for years. I'm like, oh, no, there's there's a huge disconnect. Why aren't we targeting some of this? What really is getting in the way for adult contact from

Lynn Davison 15:09
a database? Yeah, I love the ladies who do the three ice creams and the the sprinkles on top and I can't do it. Justice. But they explained the three core features and then okay, there can also be these things and I wish I could I don't know that one.

Barb Avila 15:23

Lynn Davison 15:25
Oh, why not? Describe it. Oh, yeah, you can help me because what are the three Okay, so first, I know that there's the sensory, you know, integrating the sensory processing is one scoop. And there they argue that that could be bigger or smaller, you know, depending on who you are. And I read you that Alright, so the second thing is going to be what the social interaction the social piece. Is that it?

Barb Avila 15:51
I mean, I I go to exactly what it has to be present for someone to receive the diagnosis. And to be Believe it or not sensory is not actually one of them. It's sort of one of one, okay, because there's two, two scoops on my ice cream cone with a sprinkle that I would have for social reciprocity. So difficulty with the back and forth, right having to do with so social engagement is maybe just kind of awkward or struggle all together. Right. So that's where the second comes. But that's where we learned so much about how whatever what somebody else is thinking about, etc, etc. So that's the first group the second group is the restricted or repetitive behaviors or interests. And that's where the sensory often will come in, right? So somebody will get really rigid or have sensory experiences that then make them have repetitive behaviors and things like that

Lynn Davison 17:01
as a coping skill, as a coping strategy coping

Barb Avila 17:03
skill. Yeah. Yeah. To Yes. To cope with the sensory sensitivities, for example. Yes. Or to cope. Also, with the non understanding of the back and forth social reciprocity. I think they're really intertwined.

Lynn Davison 17:19
Oh, it's all Yeah, it all ends up melted in the in the ice cream cone. Yeah. That's all I'm sorry, I'm gonna have to get this out there. But it's the third piece the anxiety because that to me is in glove but that that just that the Migdal you know the amygdala. Just gets triggered. And, and how we talk to ourselves? Do we listen to that inner ticker tape of thoughts that are being presented to help keep us safe, help keep us manage our energy and help keep us in the social group in a number you know? But then there's our prefrontal who's trying to tell us make a good decision, make a plan, whatever. And how do we decide to tune in to something in FOIA tell you when when you're scared, all you do is see that ticker tape. Morning Morning Morning. Yeah, after you hear

Barb Avila 18:17
your run autistic individuals can see that a mile away that and so sometimes they'll shut down before it's even like, Oh, I just know that that is not going to be manageable for me. So I'm going to shut down. And I'm going to say no, right? Right.

Lynn Davison 18:34
No we used to say that.

No, no, no.

And then, you know, as we got older as as my kids are now all over 20 We we just we just go okay, well, I expect that now. I expect Yeah. And then you just walk us slowly a pace as the other person who can tolerate you try to rush things at kick.

Barb Avila 19:02
Doesn't Yeah. Yeah, it's funny because I also I don't know if this was the experience for you, but no is often much comes much sooner just about mentally than Yes. For artistic weeds particular.

Unknown Speaker 19:19
And if you think of that, I'm just listening to things like the audio interview I did with Bob Avila just the audio part.

Unknown Speaker 19:25
I mean, no, it's very predictable. It's I'm done. I'm out. indictable, it's safe etc. Yes. Is like opening yourself up for okay, what

Barb Avila 0:32
opening yourself up for okay, what's gonna happen next like I don't know like if I are even saying goodbye versus Hello. Goodbye is first because by I'm out of here versus hello is an invitation to okay what else are you going to ask me? What else are we going to do? What else are we going to which is all unpredictable in social interactions? Yeah so back to your your thought though is yes, anxiety comes. I mean almost hand in hand. It's almost. I do have clients that don't have anxiety also. But it's very rare.

Lynn Davison 1:12
It's very rare.

Barb Avila 1:13
And when I even when I say that it's not that they don't have anxiety, it's just that they don't have it as pervasive all the time. Right, because we all we all have anxiety, I shouldn't say, you know, yeah, we all we all

Lynn Davison 1:26
manifest that fear. That's not hard. That's hard wired. Yeah. Good question here. We, yeah, you know, if anybody would like to, you know, place a question in the chat box. I promise that I will look for it. I don't see any Oh, love that point, no shutdown. Unpredictability down. Yeah. Jane is contributing, and I really appreciate hearing from you all, so please send some some questions in but here are those that were one that was submitted ahead of time, on page 73. You described dysregulation as not being the time to return to the flag. I love that return on situations, you know, in order for for new learning to take place, but Monica asked, I feel more often than not, even when we're in a calm space returning to that situation with with her autistic young adult starts the dysregulation process all over again. And then you know, they become angry and defensive. So there she is caught in this vicious cycle, you know, where people just know we're just not learning together. So how do we gather that?

Barb Avila 2:38
As an excellent question. So first, like I said, I like to give credit to other people. So return to the flag is actually the way that one of the moms that I work with described it when I was talking about that concept, and I just loved it, so I have to give her credit. But it's a really great question that I actually I hear a lot I feel I hear really frequently. And I'd actually like to take a step back and consider that someone who's not always feeling heard or seen, may develop habits to shut down conversations even before they get started. So really, I'm going to jump into a recommendation for the sake of time is that I'd, I'd work on connection and building trust with someone that you'll listen without judgment with and just to connect with them as they are and not just pushing you're challenging them all the time because I do hear from autistic adults. A lot is like, I'm not even going to come out of my room because every time I come out of my room, they're asking me, what did you do today? What did you build? Right? Instead of just, hey, what were you reading and let's talk about that. You know, let's talk about that special interests that you have in anything from politics to Legos to whatever it is. Let's talk about that and just to really connect first because if they think that you're always going to come and at them with something, they're not going to be open to that. So you very specifically, you may wish to even assign yourself a goal of connecting just because at least 10 minutes per day, I often give like this little like just for yourself. They might have done that today, 10 minutes per day without an agenda. And you might have to do that for like, two weeks. And then return to that to do list for change. But don't lose sight of having that connection time every day. Because all of us need that right. We all need to be seen book to train

Lynn Davison 4:42
myself to do that. Yeah. This was four years ago and my son was in a depression dip and I was worried about him. So we started taking walks together every day at five o'clock. And I had to train myself to stop suggesting advising and criticizing I call it I had to stop stalking him and bite my tongue a lot of times and I've shared that enough. Thanks when something would come up and I would just be all out and like you can't do you have to? And I just I had to teach myself to stop.

Barb Avila 5:20
Yeah, and I get a lot of people who are like, Well, fine, Am I just supposed to let go and never had any of these expectations? And that's not what I'm saying.

Yes, I'm saying in order to get to those, somebody has to be seen first. They have to be feel valued. They have to feel like they have a say when you know and personal agency which I talked about in the book as well of being in order to be a part of that conversation about making things better in the future, which is that you know, returning to the flag.

Lynn Davison 5:54
So good. Well, Frank, made a comment in the chat that we talked about. You know, coming from a lack of trust, and yes, leading to something good.

Barb Avila 6:06
Yeah, absolutely. No is, you know, I like how he said that is the lack of trust.

And it's interesting because of the lack of trust not only in the other person but also in themselves to be able to handle something that is coming at them from that they don't feel like they can handle even neurologically confidence level.

Lynn Davison 6:31
Yeah, that's how I get the short chirps. I know that something's going on. Yes, no, maybe the short chirps and it's just the lack of confidence plus a lack of trust. I think yes.

Like up prices. I misread his statement. A lack of trust that yes, never leads to something good. Thanks, Frank, for clarifying. So the lack of trust is that yes, never leads to something good. So that's a fear must be right. If you do some, yes, that it's that nothing good is gonna come out of it.

Barb Avila 7:09
Well, and I'll take that a little bit further and be curious what Frank has to say is that, yes leads to unpredictability and unpredictability is what never leads to feelings of confidence, trust. It feels that blood that chaotic the feelings of not being able to handle it. And so now not leading to anything good. I say yes, it's unpredictable. It never leads anywhere. Good. So I'm going to stay in the safety zone of saying no, and having things be more predictable.

Lynn Davison 7:45
And yeah, here's my part. Here's the part that really concerns me, and that is that we grow when we're uncomfortable. Yeah. And so we have to figure out how to feel the feeling anyway. Yep, there's a book a long time ago. Feel the fear and do it anyway. That title? Yeah. And so I tried to teach you know, well, you know, if we can just drop into our body and recognize that it's a vibration caused by a chemical that was

Barb Avila 8:17
simulated by our

Lynn Davison 8:19
brain, you know, can we just describe it? Can we act like and then you know, I try to teach that the feel the feeling piece. I sometimes worry that I'm asking too much. You know, because of the sensory processing. It's just like they're on fire when they feel

Barb Avila 8:36
well, and I think that's an excellent question to ask, Am I Am I asking too much because it isn't about whether or not you challenge it's about how much you challenge and how you challenge and how because, how, how some of us, neurotypical neural neuro diverse I'm not quite sure I know that some people are moving away from neurotypical. So I want to be respectful of that and actually not sure. It's so awkward with some

Lynn Davison 9:04
of these words, isn't it? There just aren't Yeah.

Barb Avila 9:07
But non autistic our experience is I lost my train of thought when I started thinking about the different words. I'm sorry. I don't think we can.

Lynn Davison 9:21
Yes. Well, Frank just said that the lack of trust comes from a lifetime of experience. Also to your natural definitely, I've found that things often don't get better with experience.

Barb Avila 9:37
Okay, so that reminded me what I was gonna say. So

what we as non Autistics feel is a challenge, maybe way too much for somebody who is autistic, right, because we process things differently. So we may be thinking it's just let me use a really concrete example. I just had somebody a couple of weeks ago say doing laundry to us feels like one task. Just do your laundry. Just get it done. What's the big deal but in the launch, but to somebody who has autism, it feels like 50 tasks. You have to collect the laundry that you need, what's dirty, what's not might even be three tasks right there, in addition to then getting it downstairs or you know, to the apartment complexes, you know, whatever, to putting it in the laundry. Right so just that like to think about what we're asking you just do laundry has a really different experience for somebody. So breaking those down into, okay, you do just this part and then I'll help you with the rest. Like a partner with you with the rest might be the challenge that that person needs, rather than just do laundry because sometimes you just have to do things that are hard.

Lynn Davison 11:14
You follow me? Yes. Well, in fact, that's how I get out of overwhelm, is I break the task down to the very first step, and I teach the other one about no more trying to get things done. It's okay, what's the next best thing that can do here? That's kind of and that has helped me incredibly, though I can and I'm trying to use that as often as I can, you know, where it's okay. Well, if you're not up for the whole kitten caboodle, let's just start with the first step.

Barb Avila 11:44
Yeah, and sometimes also, even just saying, you get started and then I'll help you or, like, I think we think it either has to be them or us, like, you know, on your own and, and, and so I support a lot of parents and saying, Well, you know, for example, like room cleaning is a common one. If you know if it's not clean by Friday evening, I'll help you clean it on Saturday morning. Because then if somebody has doesn't even know how to where to start with cleaning their room or is overwhelmed by it, then they have your help. If somebody is like nope, I got it because I don't want you in my space. Yeah, cleaning by Friday.

Lynn Davison 12:28
Yeah, yeah. So we

Barb Avila 12:30
were not if the women

Lynn Davison 12:33
asking Do you have any ideas as to how we can teach was adult son with autism that they had personal agency, respecting his and slowing down canceling online classes if he wants to? Maybe? Yes, in fact, that's the whole core of what my course is about because we go through the 10 domains, and we start with where they are. We just see exactly where they are, and we remind them of all the stuff they've already created. And then we just start with, okay, what are just the basic things that we do and the fundamentals first let's identify those things we do even when we're not having a good day. And then okay, why do we want to level up, Max? And wow, that whole personal agency piece I find, you know, these life plans that people put together and whatever and I don't know we were just reviewing that with our okey web people. And it was like so overwhelmed it just so we just have a little short list. It's just a list with just a couple on it. And you don't always have to level up you can just stay where you are. That's fine. But that piece is so important.

Barb Avila 13:49
Well, and I think that I'd like to expand on that a little bit because we learn personal agency within interactions really early in development. Autism is a developmental delay of exactly that. And so what ends up happening is that people Autistics

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