Autism Level UP! Co-founders Amy Laurent & Jacquelyn Fede on Learning From Autistic Self-Advocates

Debbie Reber  00:00

This season of Tilt Parenting is being brought to you by the Differently Wired Club. The Differently Wired Club is grounded in the values of optimism, hope, radical acceptance, curiosity, self reflection and respect. If you’re committed to a neurodiversity affirming approach to parenting, please join us doors open for a few days at the end of every month. Learn more at tiltparenting.com/club

Amy Laurent  00:25

Do seek out those autistic spaces, do seek out the autistic voices, do listen because their experience is quite different. If we’re going to provide authentic and validating supports that are actually useful to the individuals. We have to understand their experiences. We cannot project what we think they are or what we think they should be.

Debbie Reber  00:49

Welcome to Tilt Parenting a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber and I can’t believe it. But we are here at the end of this podcast season. I hope you’ve enjoyed all the conversations and incredible guests that were part of this winter season. But to close it out, I’m bringing you a fantastic interview with Amy Laurent and Jacquelyn Fede from Autism Level UP! And I’m gonna go out on a limb and say most of you have probably heard of Autism Level UP! or heard Amy and Jacquelyn’s names before. But in case it is new to you, Autism Level UP! is a resource that I have personally spent hours poring through because it’s so accessible and informative. So in this conversation, I wanted to talk with Amy and Jacquelyn about why they created Autism Level UP! how the conversation surrounding autism and support for autistic people has changed over the past decade, and how we can all level up our own understanding of and experience with autism and neuro divergence. Here’s a little bit about Amy and Jacquelyn before we get to that. Amy Laurent is an OT co-author of the SCERTS model and the co-founder of Autism Level UP!. She enjoys supporting autistic individuals and their partners by conspiring as an ally to autistic people and creative design of useful and accessible tools and supports. Jacquely Fede describes herself as a super fun, super goofy and super duper nerdy autistic advocate and the co-founder of Autism Level UP! Jac also enjoys supporting autistic individuals and their partners as well as program evaluation data and statistics and app and web development. Before I get to that interview, a quick reminder that if you haven’t read my book for parents differently wired or, or maybe you have read it but could use a refresh and want to go through it with the group of parents. I’m currently running a virtual book club to go through Differently Wired together over the course of four weeks. So we just kicked off last night, but it is not too late to join us. We’ll meet once a week over zoom to go behind the book and be available to answer questions. We’ll have lively conversation, you’ll also get a downloadable workbook so you can take notes and explore ways to apply the strategies in your own family. So if you join us now you’ll get access to the recording from last night. So you can just dive right in and get started with us at next week’s call. You can get all the details about registering at tiltparenting.com/bookclub. And just one last reminder, I will be going on a brief break for the month of May while I get ready for the new season. And I already have some wonderful conversations lined up. But that pod club on Facebook will be active so you can always continue checking in there. And of course, we still have this episode today. So here it is my conversation with Amy and Jacquelyn.

Debbie Reber  03:50

Hey, Amy and Jacquelyn. Welcome to the Tilt Parenting Podcast.

Amy and Jac  03:54

Thanks for having us. We’re excited to be here. Yeah, great to be here. Thanks.

Debbie Reber  03:57

But you guys have kind of a unique story and your relationship together as part of what you’re doing through Autism Level UP! Could you tell us a little bit about how you came to create this resource.

Amy Laurent  04:07

This is Amy. I usually start talking and then Jacquelyn usually follows up just so you guys have a sense of who’s talking and what time and whose voice is who’s. I am a developmental psychologist and occupational therapist and a special educator. And I am allistic which means I am not autistic. And Jacquelyn is a developmental psychologist, data analyst, research nerd, physical activity junkie and also an autistic adult. And so our partnership is really the combination of our two perspectives to figure out the way forward that really combines both perspectives that are necessary to figure out how to create a more kind of affirming and supportive environment for neurodivergent people.

Jacquelyn Fede  04:48

Yeah, and our partnership really came about. This is Jac now because we went to grad school together and when I was finishing grad school, I took a job. My first full time job as a tracking and evaluation specialist on a clinical research grant. And this was the first time I ever had such a mismatch between my profile and the environment around me, I could do the job, no problem. But being in the office with the human, I was coming home every single day, breaking things, kicking through walls, smashing furniture, exploding, melting down, or the opposite, meeting absolute silence and darkness and shutting down and sleeping for 26 hours. And I went on like this for months, I didn’t have my diagnosis at the time, and I had no idea what was going on. But asking someone else for help was not even a thought process that occurred to me for months, and months and months and months. And finally, one day, I had taken a picture of a hole that I kicked through my door. And I sent a picture, this picture of this hole to Amy, who I had worked very closely with in grad school and somewhat stayed in contact with even through my shutting down of all the few social connections I had. And I said, lol, I did this. And that, for me was a huge plea for help to get to that point. And from that, we started working together. And she started supporting me in sensory. And then in social when we realized that was a part of it. And through my diagnosis. And I think that initial working together really began with us trying to do more for the larger community, like, let’s take this framework we’ve used for me and make it applicable to the larger autistic and neurodivergent communities.

Debbie Reber  06:51

It’s a really incredible story. And I’m wondering, how long ago, did you get your form identification? And did you decide we need to kind of share this with people,

Jacquelyn Fede  07:03

I took that job in July of 2017. All it took was two weeks, that’s when I got to that lowest low. And then I went on for months in silence, just not having any idea what to do.

Amy Laurent  07:18

And December was the first time that I sat down with you, yes, but what I was starting to allude to is you knew me very well. And you knew my work. But you never, at one time thought that, hey, I know this person who has the skill set who might be able to help me, that was not even part of the thought process. It was just I was one person she still trusted it was in contact with. And so when she sent me the door, I was like, Oh my gosh, like I know, I didn’t know exactly what was going on. But I knew what was going on from a regulatory and a sensory standpoint. And so…

Jacquelyn Fede  07:57

And I didn’t even really, I had no idea that those words even applied to me. Regulation sensory.

Amy Laurent  08:06

No, you can’t meet her without knowing she’s a sensory nightmare, so…

Jacquelyn Fede  08:10

I do. I do admit to that.

Debbie Reber  08:16

Even with that timeline, I think about how things have changed so much since 2017. I mean, I support parents raising neurodivergent kids, many of whom are twice exceptional autistic and ADHD, all kinds of profiles are so many adults who are now either self identifying or being formally identified as being autistic. Knowing this was only six years ago, it feels like the landscape has changed. I’m sure that your work is part of that. But have you noticed that kind of broader at least understanding that we’re talking about a lot more people than we may have believed even 10 years ago?

Jacquelyn Fede  08:52

Yeah, thinking back to when I was in school, I think that there’s a lot of people in my generation, especially those who present or identify as female, who were missed, because at that time, it was really the most DSM stereotypical cases, even for males, that were being diagnosed. And as adults have been telling their story, and blogging and streaming and sharing all this stuff, we’ve really come to a much more full understanding of the thing we already call the spectrum, but didn’t really live by and I think that’s it’s really empowering. I mean, that diagnosis for me, was the difference between thinking I’m some broken human who’s not cut out to exist in the world, or at least the working world, to Oh, my brain is different knowing that gives me power and allows me access to tools that might work for me. and actually navigate these environments. So I think there’s a big shift, and you’ve been in the field longer than me. So we’re probably the better one to answer.

Amy Laurent  10:08

But I think that the companion answer to that is my perspective. Because I was in the field for a long time. I’m a co author of the certs model, and I specialized in supporting autistic individuals for a very long time. That being said, I did know Jacqueline for a very long time, I didn’t know she was a sensory mess. And I knew that she had regulation challenges, because I just knew those things about her. But she had such a mask.

Jacquelyn Fede  10:34

Because if you meet Amy in person, she will be judging your senses.

Amy Laurent  10:40

I’m trying to see if you’re a good match for me, that’s all. Okay, so yeah, we get along quite well, because of that activity profile. But at the same time, your mask was something I’ve never seen in anybody before. She was the calmest, coolest, most collected person on the surface. And so it wasn’t until we really started digging into the sensor and the regulation side of things. And I started reflecting on some of our other conversations, where she would say these things like, and I would just shake my head and laugh and be like, she’s so naive. And then I started to put all those naive statements over all the years all together and be like, Oh, it’s not naivety, it’s social, not understanding. And here I am, somebody who has been in the field for a long time is a co author of a model who’s looked to as somebody as a specialist, and it took me a long time to put the pieces together to go, oh, my gosh, I missed it. And I truly missed it. And then when I started to go back and put things together, I’m like, I don’t know how I missed it. But it did. And so again, I think that evolution in the field, not just with autistic individuals identifying themselves and recognizing in themselves, but the professionals are going, Oh, we had this very narrow view.

Debbie Reber  11:59

That is fascinating. A couple of things. One is, I feel like even hearing that is going to be helpful for parents who maybe discovered this or supported their child much later than they wish they would have and may be feeling guilty about that. And I should have known. How did I miss this? And so it is comforting to know that this was your profession. And I also recognize the power of masking. We talked with Devon Price about unmasking autism. And that’s something we’ve talked a lot about on the show. And it is something we know that people can be very good at. And especially as you said, people who identify as female, it tends to be even a stronger skill. I do want to mention, Amy, that you mentioned the certs model. And so we’ve had Dr. Barry Prizant on the show a couple of times and so you’ve worked with him, can you just take a moment to tell us what the SCERTS model is just for people who may not be familiar with that.

Amy Laurent  12:50

Sure. So SCERTS is a model of education or support for autistic individuals. And it’s an acronym because all models of education have acronyms associated with them. So S and C stands for social communication, and we’ll level that up in just a minute, E and R stands for emotional regulation, and T and S stand for transactional support. So the model is designed to support autistic individuals in developing the communication and regulation abilities that will help them navigate their daily lives in ways that are meaningful and authentic to them. And that’s done through transactional support, right? That’s the partner in this. It’s not that we’re just looking for change in growth in the child or the individual. We as partners are willing to come to this interaction and this relationship and change and grow with you. And, that’s really the basis of certs. And we talk about it as a person centered model. It’s developmentally grounded. There’s an evidence base behind it, all of those things, but then we enter in the autistic perspective. And Jacquelyn likes to level up the acronym for us, it’s the same acronym, but the S and the C are…

Jacquelyn Fede  13:55

I say significant communication. Yes, I think social, especially when you’re talking about a neurotypical population has a very specific connotation that doesn’t always drive with autistic culture. So significant communication, energy regulation. Emotions are, you know, one of the things that we kind of take on not that they’re bad, but they are, in fact, made up. They are a, they’re a social construct, they’re a socially abstracted layer, put on top of all this physiological arousal going on in the body. And I’m only half joking that they’re made up because for those who are socially attuned, it’s very real, to have that shared understanding and use those terms, to communicate with another who presumably understands what that means when you say that word. And if you’re not someone who’s grown up wired for the social, that development may look of those constructs and ideas may look very different or may not happen at all and So that’s really why we have stripped it back, try to take off that very abstract layer, make it more concrete with energy regulation, where’s your energy? Where do you need it or want it to be? How do we shift it around if it’s not there yet, so E and R, and then transactional support, that’s just jargony. So I turned it into a two way street, it’s a two way street, we got to think about the burden for change can’t solely be on the autistic person, because then change in our society will never truly happen. So I can’t expect autistic people to change without the partners around them. Also being willing to understand and change and where we can make environmental and activity modifications, we want to do that. And we want to inform the person that we’re doing that so that when they leave a school or a home, leave those four walls, they actually understand the things that they need and might need to advocate for. So that’s the leveled up SCERTS.

Jacquelyn Fede  13:59

I love that. I’ve heard you talk about the energy regulation versus emotional regulation before. And that just makes so much sense. And even as you’re explaining how you’ve re-worded that acronym, and stripped it down. It’s just such a good reminder that everything needs to be questioned constantly, like the language is evolving so much I feel in neurodivergent spaces when I launched tilde parenting seven years ago, and I probably would be really embarrassed to go back and listen to some of my earlier podcast episodes, because I’m sure I use language that’s not acceptable anymore. But I love this idea of continuing to question these social constructs in these kinds of ways that we just assume are kind of the baseline or the standard and just disrupting that is really exciting.

Amy Laurent  16:49

Yes. We’re fans of disruption.

Debbie Reber  16:53

Yeah, it’s awesome.

Debbie Reber  16:57

Are you craving personal support, practical tools and genuine community to help your life as a parent feels so much better? Check out my Differently Wired Club. The club is a neurodiversity affirming community that focuses on seeing our children through a strengths based lens and prioritizing our own personal growth, our values, our optimism, hope, radical acceptance, curiosity, self reflection and respect. The club features virtual office hours and coaching calls, expert guests monthly themes, connection with an incredible community of parents, an extensive resource library, and much more. Doors open for a few days, at the end of every month, Learn more at tiltparenting.com/club.

Debbie Reber  17:44

I want to be sure we spend some time talking about your resource and what you’ve created in autism level up, which is about disrupting the conversation, I think and being such a leader in this paradigm shift, just tell us what it is, first of all, as a tool is a resource for listeners to engage with.

Amy Laurent  18:01

So we’ve got many different tools and topics that we tackle. So if people go to our website, they’ll find a wide variety of resources. But this energy work that you’re talking about a little bit really does come from the crux of Jacquelyn’s and my work together to help support her in her regulation. So obviously, I had this very emotional regulation focus based on certs. And it was kind of how I thought and as I got to know Jacquelyn differently, owner previously, it was very quickly apparent that emotional regulation wasn’t going to work, no talk therapy, no labeling of emotions, none of that was gonna have any success. But I knew and continue to know that from a sensory perspective, that’s your path to regulation. And that ties much more to energy for many people. And even when you go back and you look at the developmental literature, that is the foundation of certs and you look at how we wrote about certs. We always wrote about energy and emotion as being intertwined with those two things and like the neurophysiological literature tells us that too, right? There’s a shift in emotion. There’s a shift in energy, there’s a shift in energy, there’s a shift in emotion. And as we started working through what Jacqueline’s needs were, it became apparent you said that that emotion is a language barrier for you. So it just made sense to go. We can strip that away, we can simplify it, and still provide all the support that you needed and need.

Jacquelyn Fede  19:33

Yeah, and I always had this knowledge that while the emotion words have always been elusive, to me, I definitely have a very intuitive sense as to am I lacking energy is energy surging throughout my body. Is it moving quickly? Is it pulsing? Is it all streaming towards one thing or is it spread all over the place? And so the server Really helpful things for regulation. And so we started designing tools around this concept, we use those tools for quite some time. And then we actually reached out to people who had been using them, adults, children households, full households using these tools, and we kind of hosted a paper, we didn’t really write it, we hosted it, asking people about their experience with energy. And there are 18 different artistic perspectives in this paper. It’s also free, we can provide a link, talking about things like, this is what was missing, my entire household uses this now, it makes so much more sense. Energy is the first language of the autistic person and all these things. So it’s great because my experience is one autistic experience. And yes, it can give great insight into the autistic brain and how it might work and such. But you have to know from more diverse groups, people who are typers, people who are very young people who are very old people who come from different backgrounds and cultures and such. How is it working for them, and this was a resounding idea that this framework works for us. And that that was a beautiful thing to see. And so we’ve built off of it, we’ve built multiple tools, and a whole suite of tools around energy and others that are like one offs of this problem arise in a school. And this is the support we ended up making for it. And hey, it might help your situation too.

Amy Laurent  21:35

And I think that one of the things that really sets the energy paradigm aside from other kinds of regulation programs, is that it really I recognize is that all energy levels have their place, there is a place for really intense maxed out frenzied energy. And if you’ve got that energy in the right environment, you’re well regulated for that. And it’s fantastic, right. And there’s also places where that really single stream flowing energy that Jacqueline’s talked about is the right fit. And if you’ve got that energy, you’re right where you need to be, we’ve all been there, we’re single stream and flowing on something else. But it will be better if our energy was maybe lower, or higher. And if we don’t have a match, we’re dysregulated. So it’s not this idea that single stream flowing is where we need to be all the time, it’s what energy do you need for what environment? And do you have the skills to shift up or shift down to get that right energy. So that’s a different twist that we bring to all of this.

Debbie Reber  22:37

It’s also fascinating. I mean, we spent so much time talking about emotional regulation and co-regulation. And first of all, I’ll have links in the show notes pages for listeners, you have to go to Autism Level UP!, there’s so many incredible tools, I spent a lot of time going through these just wonderful PDFs and downloads that can support people and understanding their energy level and what they need for different environments. I’m just looking at the power plan tool here, and I just loved it so much. What do I need to power down? What do I need to power up how to kind of individualize that for the person? So just incredible resources? I’d love to know how people are engaging with level up, I know that you encourage people to kind of assess where they are. Because first of all, the idea of leveling up is just great, right? It’s like wherever you are, you can level up your knowledge, your understanding your experience, you can better show up whether you’re the autistic individual or whether you’re someone supporting an autistic individual, or wanting to be an ally, as an holistic person, you have these five definitions of where someone might be on their personal journey and like assessing where am I on this? And then how do I love a lot? Can you talk a little bit about that?

Jacquelyn Fede  23:46

So this really came about from that day or that month? That World Autism Awareness Day World Autism acceptance day World Autism Appreciation Day, fill in the blank, right? And we were kind of talking about this, like autism awareness. That’s, I mean, it’s a really low bar, but some people really actually need true awareness. Acceptance, also kind of a low bar, but still like, how can you accept something that you don’t fully understand? How can you appreciate something you don’t fully understand? All of these things might be the case for someone and labeling it one just doesn’t seem right. And we were having this very intense conversation about it, and it kind of fizzled out for a moment. Like we really need to ponder this. And then Amy walked like, I don’t know, 20 feet away from me into another room and I texted her and said, I’ve got it. It’s autism level up wherever you are. Take the next step. If you are someone who knows of one autistic person in the media somewhere and you need real awareness, that’s where you should focus your energy. If you’re someone who has the On the work then in the community, listen to autistic voices, and you truly want to help and advocate and empower autistic people. We’ve got ideas for you, too, if you’re truly ready for that step. So it’s not about excluding people that aren’t at some certain level, it’s about bringing together people whatever level they’re at, and being able to provide some sort of resource or assistance or guidance to assist them and in real life, and what we do that comes out in, we do professional developments in schools, we will do individual consults with families and people, trainings for government organizations do all sorts of thing. I mean, there’s a lot of different ways it comes about even beyond the resources that we’re developing and putting out on the web.

Debbie Reber  25:48

There is so much work to be done, I was having a conversation yesterday with someone just about workplace environments. As an example, there seems to be this growing movement of workplaces really valuing the contributions of autistic people, which is great. And let’s also figure out how we can support environments as opposed to just bringing in autistic people to use them for the skills that they bring. So I really love this framework that you’ve developed. And also, I just want to put out there for parents, a lot of people come to tilt, who are very early on in their journey, sometimes they’ll be encouraged to join artistic lead spaces, and can say the wrong thing, and then feel ashamed and embarrassed that they’ve kind of blown it or they feel judged. And I really appreciate just the tone that you set through autism level up. There’s no shame here. If you’re committed to this journey, let’s meet you where you are. And let’s build on that. So I just think it’s such a wonderful resource.

Jacquelyn Fede  26:45

We do have an amazing community, too, and it is very respectful. I mean, don’t get me wrong, my people are a blunt people who give you the hard facts, but they’re very understanding if this is your first time, the only knowledge you’ve probably been fed is very negative, like I’m so sorry to tell you. And we know we know, that’s the system that you’re coming from. So we are lucky to have such an amazing community we are.

Debbie Reber  27:14

So as a way of wrapping up if there’s something you want listeners to leave this conversation thinking about, or considering with regards to their experience either being autistic themselves, or maybe more specifically for this audience raising an autistic child, what would that be?

Amy Laurent  27:32

The one that I always go back to that I think is really important is do seek out those autistic spaces do seek out the autistic voices do listen, because their experience is quite different. If we’re going to provide authentic and validating supports that are actually useful to the individuals, we have to understand their experiences, we cannot project what we think they are or what we think they should be. And that is very much the ethos of autism level up is I have knowledge and understanding of things. But I got to bring it to the community and get that feedback, and combine it and create together to be able to actually generate something that’s useful.

Jacquelyn Fede  28:15

Yeah, and the thing I would say, two things. One is different is just different. It is not a deficit, the more you can reflect on your own biases towards normal, and what is normal, and kind of let that go, the better it will be for everyone. And my second thing that I always tell parents, especially teachers, educators, is along this journey with a different brain from autistic people, you’re gonna get things wrong, you’re gonna make mistakes, that is undeniable. And I’m just gonna give you all the permission for that in the world right here right now. Because it is just such a different relationship. When you come at it from the point of I really want to understand what this is like for you or what this means for you, or what it looks like for you, what it sounds like, what it feels like for you. Rather than I need to show you what this is supposed to look like, I need to show you what this has to look like for our society and those norms that I talked about before. So make the mistakes, have fun with them. Amy makes mistakes still all the time. And we have a great time laughing about them. I make mistakes too.

Amy Laurent  29:27

Occasionally. We don’t have a tally board, which is good.

Jacquelyn Fede  29:33

But yeah, just be a lifelong learner if you are the parent of any child, but especially have an autistic child, be a lifelong learner.

Debbie Reber  29:42

So good. So good. I’m gonna have links to Autism Level UP! You can find all of the tools there. Are you guys on social or anywhere else that you’d like people to engage with you?

Amy Laurent  29:53

So Facebook is our most active group. We’ve got quite a large following on Facebook. So I would definitely encourage people to check out autismlevelup.com. We have very sporadic engagement with any other social media. Between us, we have the executive functioning for one platform.

Debbie Reber  30:09

I’m all for that. Okay, so listeners again, I’ll have links to everything in the show notes page that we talked about. And I’ll link to the interviews I’ve done with Barry present to where he talks about certs and his book uniquely human is also great if you’re newer to this journey and want to have a more positive lens to consider autism through so Amy and Jack, thank you so much. I just so appreciate you and what you’re doing for the community and for taking the time to talk with us today.

Amy and Jac  30:36

Thanks so much for having us.

Debbie Reber  30:42

You’ve been listening to the Tilt Parenting podcast. To go deeper into this episode, visit the extensive show notes page. For every episode, there’s a dedicated page on my website with links to all the resources mentioned, a full transcript and a podcast player with key takeaways marked so you can easily go back and re-listen to the sections you’re most interested in. Just go to tiltparenting.com/podcast and select this episode. The Tilt Parenting podcast is hosted by me, Debbie Reber, author of the book Differently Wired and the founder of Tilt Parenting. This episode was edited by Andrea Curtis-Amezquita and show notes were put together by myself, Andrea and Lindsay McFadden. If you get a lot out of this podcast and want to help cover the costs of its production, please consider joining my Patreon campaign. On Patreon, you can sign up to make a small monthly contribution as little as $2 a month and it’s super easy to sign up. Just go to patreon.com/tiltparenting To learn more, or click on the Patreon link on any show notes page. To follow Tilt Parenting on social media, go to @tiltparenting on Instagram and Twitter and on Facebook. Lastly, please help this podcast stay visible and easily found by the listeners who need it by subscribing and leaving a rating or review on Apple podcasts or wherever you listen to podcasts. Thank you so much. And that’s all for this week. Stay safe, stay well and take good care. And for more information about this podcast or any of the resources that tilt offers, visit tiltparenting.com