AuTeach Founder Robin Roscigno on Respectful and Neurodiversity-Informed Parenting

gender nonconformity kids
My guest for today’s episode is AuTeach founder Robin Roscigno, a PhD Candidate in Education at the Rutgers School of Education who specializes in the history of autism intervention in the US. Robin’s experience as a late-diagnosed autistic woman, parent of an autistic child, and educator with ten-plus years of experience inspired her to start AuTeach, her community outreach project about respectful, neurodiversity-informed parenting and teaching.

During our conversation, you will hear us talk about Robin’s work with AuTech, her powerful TEDx Talk called Your Autistic Child Can Have a Great Life. Here’s How, which dives into the crucial and sometimes daunting moment after parents receive an autism diagnosis for their child, and what the “autism industrial complex” is. Robin also talks about her area of focus for her doctoral program, which is actively working to get rid of the use of restraint and seclusion as a “tool” in schools, and shares advice and action steps we can take to advocate for and protect children in school systems that are often disrespectful to autistic children.

 

About Robin Roscigno

Robin Roscigno is a PhD Candidate in Education at the Rutgers School of Education who specializes in the history of Autism intervention in the U.S. Her experience as a late-diagnosed Autistic woman, parent of an Autistic child, and educator with 10+ years of experience inspired AuTeach, her community outreach project about respectful, neurodiversity-informed parenting & teaching. AuTeach has reached millions of viewers on TikTok and has helped shape a new narrative around Autism.

 

Things you’ll learn from this episode

  • Why Robin started AuTech and how it shifted during the pandemic
  • How Robin uses TikTok to share information about neurodivergence
  • What the “Autism Industrial Complex” is
  • Robin’s ideas for a better supporting parents grappling with a new autism diagnosis for their child
  • Robin’s thoughts on the tension within the AA (“actually autistic”) community between parents of autistic children and non-parents
  • How parents can advocate expanded insurance coverage for new and different therapeutic modalities
  • The state of the use of restraint and seclusion in schools
  • What parents can do if they find out that their child has been restrained or secluded
  • Robin’s advice for parents who are new to the autism community

 

Resources mentioned for AuTeach and neurodiversity-informed parenting

 

Special message from our sponsor

Bracing for a challenging school year? Lindamood-Bell Learning Centers can help your child catch up and stay on track no matter what. We teach students how to read, comprehend, and do math to their potential. Instruction is individualized, one-to-one, and proven effective for students with challenges that affect learning, including students with dyslexia. It’s a great time to get your child the help they need—the Learn More Save More discount applies to any type of instruction, in-person or online.

Get more information at LindamoodBell.com/tilt.

Episode Transcript

Debbie Reber  00:00

Today’s episode is brought to you by Lindamood-Bell Learning Centers. Lindamood-Bell Learning Centers help students catch up and stay on track one to one instruction for reading comprehension and math in person or virtual. Learn more at Lindamoodbell.com/tilt

Robin Roscigno  00:19

They are overused and I can say that with great confidence because I work idle on a lot of cases of routine restraint and seclusion. It happens in public schools. It happens in private schools. It happens in residential programs. It’s pretty ubiquitous, and anyone who has a kid who has any type of behavior has likely had their child at least partially restrained at some point in their school career.

Debbie Reber  00:47

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. My guest for today’s episode is Robin Roscigno, a PhD candidate in education at the Rutgers School of Education who specializes in the history of autism intervention in the US. Robin’s experience as a late diagnosed autistic woman, parent of an autistic child and educator with 10 plus years of experience inspired her to start Au Teach, her community outreach project about respectful neurodiversity informed parenting and teaching. Au Teach has already reached millions of viewers on Tik Tok and has helped shape a new narrative around autism. Although I admittedly am not up on Tick Tok I feel like I finally have a good reason to join just to hear Robin’s advice for parents. During our conversation you will hear us talk about Robin’s work with Au Teach as well as her powerful TEDx talk called Your Autistic Child Can Have a Great Life. Here’s How, which dives into the crucial and sometimes daunting moment after parents receive an autism diagnosis for their child and what the autism industrial complex is. Robin also talks about her area of focus for her doctoral program, which is actively working to get rid of the use of restraint and seclusion as a tool in schools, and shares advice and action steps we can take to advocate and look out for our children in school systems that are often disrespectful to autistic children. And remember, if you want to dive deeper into my conversation with Robin, please check out the show notes page on Tilt Parenting. There you’ll find a bullet-pointed list of key takeaways; a transcript of the episode links to all the resources mentioned in a podcast player with the episode broken down into chapters. So if you want to go back and re-listen to a specific piece of the conversation, you can easily find it. This week’s episode can be found at tiltparenting.com/session277. Before I get to that, if you’re looking for in-person connection with other parents and caregivers in your community who are raising differently wired kids, and share a philosophy of optimism and positivity about who our kids are, I encourage you to get involved with a tilt together group near you or if there isn’t one, consider starting one of your own. These are parent led and parent run groups that are round cities in the US and several other countries. There are actually two new groups just getting started, one in Phoenix, Arizona, and one in Hummelstown, Pennsylvania. You can learn more about these new groups or any of the Tilt Together groups by visiting tiltparenting.com/together. Lastly, if you’re feeling stressed and overwhelmed with changing schedules, family and in law dynamics, big expectations and tricky kid energy, you could use a giant reset button so you can wipe the slate clean and start fresh. Check out my new mini course The Emergency Reset. I created this course to help you get out of a negative parent child cycle and prevent you from getting dragged back into that cycle moving forward. It’s about creating new energy, a new dynamic and new resolve to show up for ourselves and our kids in a way that feels so much better. So if you could use some extra support right now and set yourself up for a smoother holiday season. Please check out the emergency reset. You can learn more at tiltparenting.com/emergencyreset. Thanks so much. And now here is my conversation with Robin.

Debbie Reber  04:48

Hey Robin, welcome to the podcast.

Robin Roscigno  04:50

Hey Debbie, how are you?

Debbie Reber  04:51

I’m doing okay, so I’ve read your formal bio and shared with listeners kind of the top line items of what you do in the world. But could you give us a little bit more of your story and who you are?

Robin Roscigno  04:54

Sure, so I’m Robin, I think that’s … We got that far. And I am an autistic parent of an autistic child. But I did not find that out until I was like an adult. So I was diagnosed after my child, which seems to be a fairly common story of women, especially our age. So, you know, I was not diagnosed as a child, my brother was. And then I went into teaching. And so before I even had my daughter, I was a special education teacher. And I taught autistic students my whole teaching career. And then I left to do my PhD, and I do research about autism, Disability Studies kind of research. And then yeah, I mean, so that’s kind of it. And then now I do social media stuff, I have my business Au Teach, which is kind of like the culmination of all of that, like bringing it all together, and then providing resources for parents and educators.

Debbie Reber  06:10

Yeah, I’d love to, I mean, I want to talk a little bit later about your research that you’re doing. Because I think it’s fascinating and so important, and actually covers things we haven’t talked a lot about on this show. But I’d love it if you could also tell us more about Au Teach — what it offers, and how listeners might want to connect with it.

Robin Roscigno  06:29

Sure. So I you know, it started as, you know, doing some consulting for schools for parents, like locally. And then COVID happened, and I was thinking of you know how to do that kind of work. And people were asking me a lot about their kids being home, and I found that there was just really a need for it. So I started with just a Tik Tok doing kind of educational content. And now I do a lot more. So I do trainings for parents, I do a lot of speaking, I did a TED talk this year. And I do kind of one-on-one consulting for parents. But then I also, you know, I’m offering some courses, and we’re expanding to have even more course offerings for parents and educators. So that’s really, I wanted it to be like a hub of good information for people who are looking for that kind of neurodiversity perspective, but also that they could put into action. So not just ideals, like actual practical suggestions. And so that’s kind of what we do.

Debbie Reber  07:34

Well, I’m super impressed just with the Tik Tok, and I sound  … I’m just even seeing the Tik Tok, I am so not into it. My husband watches Tik Tok, but I’m always impressed when I meet people who are utilizing that as a social media, because I think it can be so effective, especially what you’re trying to share.

Robin Roscigno  07:53

Yeah, I mean, I, you know, I got on Tik Tok in the beginning, because it just worked for what I wanted to do, because I wanted to like, talk to people. And I never really figured out Instagram. And so this was like, in the beginning, you could make a video and a million people would see it. And it just, you know, had this like authentic reach. And I felt like I could do something good on there, and then maybe translate it to, you know, other platforms. But in the very beginning, it was like the quickest way to get what I was doing out to the most amount of people.

Debbie Reber  08:30

So cool. Okay, so you mentioned your TED Talk, which is fantastic. And listeners, I will have a link in the show notes. So definitely check it out. It was called Your Autistic Child Can Have a Great Life. Here’s How. Can you tell us more about that talk and what your goal was in what you were hoping to share with the world?

Robin Roscigno  08:50

Yeah, so the TED talk is really about that kind of moment where you get that diagnosis, and you are bombarded with information, right. And so now more than ever, parents are going online, and they’re just getting literally bombarded with recommendations. And there’s more and more new therapies and conflicting information, and just how to weed through it, and how to actually reprioritize what’s actually important, which is that your child’s health and happiness is going to come from your acceptance, first and foremost, and then getting them supports that they need, the amount that they need and not going overboard and kind of trying to help parents understand that actually, a lot of those things are completely not necessary, right that there are a lot of things sold to you and you don’t actually need all of them, right. You just need some but not all and kind of helping parents to see through a little bit of that because, like it or not, autism services is a billion dollar industry. And parents are the bread and butter, right? And so kind of talking about the way that people get parents to buy things is to make them really afraid, right? Afraid of the future, afraid of their child, afraid of everything. And so that’s a really effective motivator to buy, to buy therapies to buy services to buy supplements to buy, you know, the next thing. And so kind of giving parents that pep talk in the beginning of you don’t need all of those things, right? You need to be a loving parent for your child and accept them and get them support. But you don’t need all of it.

Debbie Reber  10:37

Yeah, I mean, watching your talk was the first time I had heard the phrase “autism industrial complex.” And as soon as you said it, kind of a light bulb went off for me, and I just hadn’t heard it in that way. Is that a phrase that you coined? Or can you talk more about that?

Robin Roscigno  10:53

Sure. The first person who actually uses it is Anne McGuire, who is a tremendous autism, critical autism scholar in Canada. She has a great book called War on Autism. And then this piece kind of started writing about it. My colleague, Alicia Broderick actually has a book coming out of the same title. And she is, you know, way, way ahead of my thinking on this. This is really her life’s work. She’s been doing critical work around autism for a long time. So we kind of took what Anne was kind of getting at and then really out, laid out the way the complex works, right, the way that fear breeds, the need, the need is solidified by people’s purchasing power, and how that creates a kind of system that is making a lot of people very wealthy.

Debbie Reber  11:46

Yeah, it really, like I said, it just struck me so much. And I was just thinking about, you know, I run a community, a lot of folks on Facebook, in particular, they come to Tilt Parenting, to my Tilt Together community, very fresh, like they’ve just gotten this information, they are introducing themselves through the level of the autism level their child is, which is not something that I was even spoken about when when I went through the evaluation process. But so they have this list, right? I need to do this, this and this. And I’m just wondering, what is a better onboarding process and how do we support parents who are early on? Because I feel like there’s a deprogramming that has to happen, right?

Robin Roscigno  12:32

Yeah, I mean, in some ways, it’s giving parents permission to take it slow, right. And the way I kind of explained it to parents is that therapy, or choosing therapy for your child is almost like making a pie crust, right. So like you’re making your pie crust with your butter and your flour, and you got to add the water at the end, right. And when you add the water, you have to add just enough so that it comes together. But if you add too much, it falls apart. And so adding therapy to your life, right, you’re going to do it based on what your child needs, not on what the diagnosis is. So the way therapy is sold, right is your child is autistic, these are the best therapies for autism. And then here are all of them, you should do as many of them as humanly possible. And if you don’t, you should feel very, very bad about that. And you should be striving to do more. And instead of doing that, you know, I kind of get parents to like, take a step back and say, okay, so what are your biggest struggles right now? What is your child struggling with? And then they’ll say, you know, potty training, or I would love for them to be able to communicate more verbally, or I would love for them to use an AAC device, or they’re banging their head against the floor all day. Right? So starting with, like, what the needs are, and then say, Okay, well, here are some therapies or modalities that can help with that. And you can do a little bit of that to support growth in that area. And you don’t have to do everything else. So tune out the noise, instead of thinking therapies for ADHD therapies for autism, and kind of lumping them all together as this like global necessity, really thinking about what is the purpose of therapy in general, right, and as to support growth and development in these particular areas, and then matching the need with the modality if that makes sense.

Debbie Reber  14:25

Yeah, it makes perfect sense. And I think the tricky part is, and this is probably what you find in the parents you work with is that they do feel so vulnerable, and it’s so outside their comfort zone. And so even talking back to or questioning or challenging advice from a diagnostician or a pediatrician might feel really scary, right?

Robin Roscigno  14:50

Yeah. And so a lot of what I’ve been doing, you know, lately on Tik Tok is I have a series going on where I’ve been helping parents like navigate that initial call to a therapist Right? Or what do you say when they recommend X? What do you say when they want to do why and you aren’t comfortable with that? How do you actually navigate that process, and kind of giving people almost like scripts to do it because it is tricky. And you there is like a kind of impulse to recommend more and more and more, and everyone has their specific thing that they champion. And they all get thrown all of it at once. And so kind of like weeding it out and saying, okay, like, we don’t need to do that right now. Let’s focus on this specific priority right now, and then how to communicate that back to your child’s doctor. Mm hmm.

Debbie Reber  15:41

That’s great. Now I am going to have to jump on Tik Tok just to see what you’re up to. So that’s very cool that you’re offering that because I think scripts are so helpful. I’m a big fan of having all the things written down because otherwise my words get twisted. So I wanted to ask then, in terms of this idea of parents, this is also another big conversation in my group is oftentimes parents with autistic children, or they’ve just found out their child is autistic. And they’re asking questions, and I have a lot of autistic adults in my group as well. And they’re always like going to autistic lead spaces, you need to be talking to actually autistic and that is what stands for in this world actually autistic. Can you talk about the actually autistic community and parents, you know, muggles, like allistic parents and the tension? Because it’s, it is really tricky, especially when you start talking about therapies and certain kinds of interventions.

Robin Roscigno  16:39

Yeah, so I mean, when I set out to kind of start to teach, I saw this need to communicate between the groups, right. And so I’ve been in a lot of spaces that are autistic spaces that I felt a little like, I couldn’t get the advice that I needed, because there was a lot of don’t do this, don’t do this, don’t do this. Don’t do this. That’s abuse. But you know, but not a lot of like, so what do I do then? Right, and not a lot of real consideration of like, the actual material constraints parents are under, right? So it happens a lot with ABA discourse, right? As a parent is told, don’t do ABA, it is child abuse, right. And that is all they are told, then they go to their doctor and says, If you don’t do ABA, I’m going to call CPS on you because you are neglecting your child, right? And so now, well, I don’t, well, I don’t want to abuse my child, but I don’t want you to know, so what am I gonna do? And so, I’ve tried to kind of bring together you know, what it’s really like to, like, raise a real kid in the real world with like, real health insurance and actual, you know, constraints on what you can actually do. Not all of us can pay out of pocket for, you know, floor time, or whatever it is, right. And then also be respectful of like, what the actual problems are with those therapies, right, and to help parents to navigate that. So I do a lot of like, you know, I call it like harm reduction work of like, okay, so you have to use ABA. Okay, I get it, sometimes you do. And there can be lots of reasons why that is the case? How are we going to find a match for you, for your child that’s going to teach them skills, but not, you know, force them to mask right and, and helping parents navigate that, I think, has put me in a weird spot where I am often the recipient, recipient of criticism from autistic adults, many of which are not parents, right. And so I think that’s a little bit of the tension is like, they’re not parents yet. So they’re not really, you know, aware of how hard it is to navigate this system, and how hard it is to just do something else. Like it’s really, really deeply involved, right, in therapy for autistic kids. And that is by design. And so that’s kind of like the approach that I have. But I have a lot of parents that find me after trying to ask questions and autistic spaces and being like, dog piled. And they still leave confused. Like, I know, everything I do is wrong, but I don’t know how to fix it. And that’s, I kind of try and strike a little bit of a middle ground.

Debbie Reber  19:24

That seems like very brave and important work, because it is complicated. I’ve had to shut down conversations in my Facebook group that kind of got nasty, and I want to keep an open mind and I want to prioritize and center the right voices. And it’s very, it’s very complicated. And I think it does leave a lot of parents feeling like there’s no good choice here.

Robin Roscigno  19:45

Right? Sometimes in real life, there isn’t a great choice, right? The way that our system is, is the things that are most prevalent, like ABA, right? are sometimes the things we want to avoid and can’t, right and so we actually have to know how to navigate those systems safely. Or else we are really, really putting ourselves in a hard situation, because then what else are you going to do? You either have to become somehow independently wealthy, or, you know, a lot of people will suggest things like just not doing any therapy at all. And I think, you know, some of the things I see promoted, and a lot of these groups are borderline neglectful, in my opinion, right? So I’ve also gotten flack for saying that it is like, not optional to brush your teeth. And, you know, I’ve had people say, Well, you’re imposing, you know, these standards, and that it doesn’t feel good and sensory issues. I’m like, Look, I have to write, there’s like, there’s things I really dislike that I have to do. And like, I have to survive in the real world, and my kid does, too. And we’re gonna try all the ways to make this as comfortable as possible. But at the end of it, your teeth are getting brushed. Like, that’s not a negotiable in my house. And I don’t think it should be in anyone’s house, really. And, you know, that gets me a lot of criticism, and, but also my, like, core group of parents were like, Thank God, somebody said it. Because I was feeling like the worst parent on Earth. But also, like, I don’t want to be like, you know, I want to listen. But then sometimes people are telling me to, like, just homeschool my kids and, you know, live off grid. And like, that’s not a reality for most people. I’m wondering

Debbie Reber  21:29

if we talk about systems in general, you know, so far right now, there are limitations in terms of who pays for what and how much money we can get, and what are the pathways? I’m wondering if you have ideas around how we as a collective as a society as parents and caregivers, and educators who are really invested in the neurodiversity movement, can be more involved in changing these systems, like how can we be a part of reframing this whole conversation?

Robin Roscigno  22:00

So one of the biggest pressing needs I see right now? Well, there’s two: one is to limit the practices we know are extremely overtly abusive, right? So restraint, seclusion. electroshock like at Judge Rotenberg Center, those things are discreet, we can tell what they are, you can tell when someone’s being restrained, right. And so there is actually a law that is trying to be passed, a bill called KASA Keeping All Students Safe Act, and there’s actions that people can take on that right now. It is, I think, at this point, it is reintroduced. So there’s a lot people can do around that specifically. The other thing that people can do, from a policy perspective, and we have to kind of look backwards is the reason ABA got insurance coverage is because of parents, largely because of Catherine Maurice, right, of Let Me Hear Your Voice. But then also, you know, Autism Speaks talk all at the same time are like promoting. You know, ABA is like this miracle treatment. So it is possible for parents’ voices to make a tremendous amount of financial difference for families. But a lot of the kind of criticism of ABA, the strategy has been to try and make it illegal. And in my opinion, it’s never going to work. Because there are a lot of things about ABA that are not different enough from other things for them to be really enforced. Right? So if you try and say Discrete trials are illegal now, right? And you do flashcards with your second graders? Did you break the law? It’s really confusing from an implementation perspective. So I really have said time and time again, I actually don’t think you can make ABA illegal. So then people say, well, let’s make the insurance coverage go away. Well, what do we know about institutions and giving money to disabled people? If we stop that, right, that line is never coming back? We’re just not getting services ever again. So my strategy has been, and it’s in New Jersey, they were able to do this as they put a bill to expand Medicaid coverage for ABA services, but they also tagged onto it that it now will cover floor time. rdi. Right, a bunch of other stuff, right. So parents have some choice in terms of what modalities are available. So there’s a bill in Texas, right that they were trying to kind of stop, you know, stop ABA. My opinion is that we should be rallying to have the insurance coverage expanded to other things, right. And at this point, a lot of those other things have a more significant research base, and we can make the argument that they’re effective. Right. And so it’s worked in other states, so I think we should be pushing for insurance coverage to cover other modalities of therapy for autistic kids besides ABA, so that there is Some choice, I think that will also force ABA to to progress, right? Because if there’s some, you know, not to get all like free market fixes everything, but if there is some competition, right, then they’ll be forced to kind of modernize along with it. So I think parents if they could focus there, that would make a huge difference.

Debbie Reber  25:22

That feels like something we can do to like that’s not theoretical, that is like, actual focus. I love that.

Debbie Reber  25:33

And now, a quick break for a word from our sponsor. Bracing for a challenging school year, Lindamood-Bell Learning Centers can help your child catch up and stay on track, no matter what they teach students how to read, comprehend and do math to their potential instruction is individualized one to one and proven effective for students with challenges that affect learning, including students with dyslexia, right now is a great time to get your child the help they need. The learn more, save more discount applies to any type of instruction in person or online. Get more information at Lindamoodbell.com/tilt. That’s Lindamoodbell.com/tilt. And now, back to the show.

Debbie Reber  26:25

Can you talk a little bit more about your area of focus? You know, I know that you are very involved in anti restraint and seclusion activism, you know, you just mentioned that that’s something that we can get involved in. But can you say more about your work in that area kind of lay the foundation for us about where seclusion and restraint has been and where we’re moving towards or evolving towards?

Robin Roscigno  26:47

Yeah, so, you know, restraints. Seclusion has been a kind of normative type of school violence. Since disabled students have been legally, some schools have been legally required to educate students with disabilities, right. So since like the mid 70s, but even before that, in institutions and elsewhere, there are stronger laws that protect patients in psychiatric facilities and hospitals, and there are in schools. And before fairly recently, there weren’t a lot of laws in states and there are still some states that have no laws whatsoever. There was a time almost that that was in some ways preferable because you could use the IEP, right? So you could write in the IEP, no restraint, and that could work since there was no precedent, right, the IEP would then become the legal document that could stop it. So then the next step was that all these states started passing laws. The problem is, the laws are not that effective, right? Because they all have this clause in them that say that you can restrain or seclude students if they are a danger to themselves or others. Well, guess who’s deciding if they’re in danger of themselves. It’s the teacher that’s restraining them. So at the end of it, they say, well, they were a danger to themselves, okay. And I’ve seen kids restrained for, you know, having a meltdown near a pencil, right, because they could have stabbed someone with the pencil. So they’re going to be restrained because they were harming themselves. And the reporting is different in every state. So in some states, they don’t have to report to the parents. And some states, they don’t have to report if they seclude there’s no laws and a lot of states about what the actual physical space that they’re being secluded in has to contain. So there may not be proper ventilation or lighting. I’ve worked on cases where kids were like, urinating on themselves in a seclusion room, or like in their past, like through their lunch, and, and well beyond the point that they were, you know, in crisis. So they are overused. And I can say that with great confidence because I work on a lot of cases of routine restraint and seclusion. It happens in public schools, it happens in private schools, it happens in residential programs. It’s pretty ubiquitous, and anyone who has a kid who has any type of behavior has likely had their child at least partially restrained at some point in their school career. And it’s, you know, teachers are sent to these restraint trainings, and it gives them a false sense of confidence that they can safely restrain someone, you can’t safely restrain someone right? There it is, by definition, unsafe. And the only reason you should be doing it is to prevent someone from dying. Because it can actually kill kids and it has. So there’s all of these government … the Government Accountability Office has published multiple white papers on this, so I’m not you know, and tracked the numbers of cases of restraint and seclusion. So it’s happening everywhere. And there has been some, you know, movement to make these laws. But what happens is when they make the law it almost kind of legalizes it. Right? Because before it was a question mark, is it legal, right? But when you make a law that says you can restrain if you meet X,Y, and Z condition, now kind of trumps the IEP, so it’s like harder for parents to fight back against it, because they have now this law that was meant to protect kids, but actually kind of codified restraint, seclusion as an acceptable practice, given that these conditions are met. So that’s where we are in the present, there is a bill called KASA, Keeping All Students Safe Act that would really limit restraint and seclusion in a meaningful way. And I urge everybody to look into the actions on that. ASAN has like great scripts, you can call your representatives. And to keep doing that, and to make that a practice. I also tell parents all the time, if you’re starting a new school, ask them to see the seclusion room. I had a you know, a friend of mine. I told her, I said, ask them to see it. And they said, Oh, we would never use that for your child and age and whatever. And she’s like, well, she’s in preschool. So I want to know what happens when she’s in first grade. And they took her to see it, it exists. I mean, they exist in many schools, and the parents just don’t know. And she took her there. And she called me crying. She was horrible. It’s horrible. And they just didn’t know and she’s like, I would have never known to ask if you hadn’t told me and seeing it. I can’t sleep at night now. And parents don’t even know sometimes because their kids are nonverbal, or can’t tell them or it’s not a state where they’re mandated to report on their kids are being restrained or secluded in schools.

Debbie Reber  31:41

Wow. And you mentioned ASAN. Could you just tell listeners what that stands for?

Robin Roscigno  31:45

Sure. It’s the Autistic Self Advocacy Network.

Debbie Reber  31:47

Thank you. And I’ll have links for all of these resources in the show notes listeners. Yeah, this occlusion piece. First of all terrifying to think that this could be happening to your child and you wouldn’t even know it. What if a parent finds out their child has been secluded? You know, restraint? Sounds like there are more formal steps that you would take but seclusion. Is that a different case? Or what would you encourage parents to do if they find out this is happening?

Robin Roscigno  32:13

As it’s happening, the first thing you can do is put in writing that you don’t want your child to be restrained or secluded. The second thing is to collect information from your child’s physicians indicating that it is contraindicated based on your child’s disability, and to submit those to the school as early as possible. In some states, your doctor can actually like a New Jersey, a child can’t be restrained in a prone position unless a physician approves it, immediately revoke any consents that you have given for the school to communicate with your child’s physicians directly, because they can obtain that consent behind your back. And so revoke that consent. So all communication between your child’s medical providers and you and the school has to go through. And then I would revisit the behavior plan immediately. If your child is being routinely restrained or secluded, something’s not working. Either the setting, things aren’t being modified correctly, they haven’t managed the behavior in a more positive way. There isn’t a good crisis plan. There’s so many different things that could be going on. But if your child is occluded, there should be an IEP meeting called almost immediately.

Debbie Reber  33:26

Wow, okay, thank you for such useful and important information. And I’m just so glad that you’re doing this work and are playing a very visible, active role in this conversation. So before we say goodbye, I’m just to kind of go back to maybe the work that you’re doing through or teach for parents, again, who are new, who are newer to this, or maybe are listening and like, oh my gosh, like I have made choices in what I thought was supporting my child that now I’m realizing may not be in his or her or their best interests. What would you encourage parents to do? Who really want to respectfully support their autistic child? Where would they start?

Robin Roscigno  34:06

So I mean, you can start, you know, with or teach or listening to, you know, autistic parents and professionals are really great places to learn not to say that autistic people that aren’t parents don’t have useful information. But there is a little bit of nuance that comes with also being a parent, right. And so we all have really good ideas of what kind of parent we’re going to be before we have children. And then you know, children have a way of humbling us. Getting advice from autistic parents or autistic people that also work in the field is going to be helpful for you just navigating the system and to get that little bit of understanding of like, okay, this is possible, this is not possible. And then you it’s always okay to kind of like step back regroup, say, you know, cancel therapy for like a month, right and say, I need to reconsider what I want to add back. Right. What was actually helping, you know, it’s so funny. I’ll talk to parents all the time, and they’ll list off all the therapies they do. And I’m like, Okay, that’s great. And they’re like, Well, I just can’t get him to get in the car to get the therapeutic horseback riding. He hates it, like, what do I do? Like, well, if he hates it, it is not therapeutic. Correct, right? Isn’t the whole purpose of it to like, help him be less anxious and to like, but he, it’s making him anxious to go. So like, maybe just don’t like, it’s okay to leave stones unturned, it’s actually better for you to actually leave some of those stones unturned, because there’s like bugs under some of them. And you can actually just add things sparingly, to that point where like, you know, your pie crust comes together, and then stop, right? If it’s working for you, and your child’s happy, they’re thriving, you don’t need to add anything else. And it’s okay to go back and rethink it, and say, maybe not this one, maybe a little less, maybe I’ll cut down hours. And to just kind of start over that you can do that at any point, anytime.

Debbie Reber  36:12

First of all, I just have to say that I love the pie crust metaphor as a baker makes total sense to me. And I’m thinking there are going to be parents listening to this who feel a sense of urgency, because you know, the information many parents hear is that early intervention is really important. You have to, you know, this stuff has to happen. And so there’s this idea of losing time, likeI am going to be too late, I pull back, I pulled back, I’ll just say when, when my child was nine, we just full stopped everything for a while and pushed a big reset.

Robin Roscigno  36:44

I will say this, that time that your child is too stressed to progress is also a waste of time. And so you can waste time in a lot of different ways. You can waste time by doing nothing, you can waste time by stressing your kid out so much that nothing is working, right? And that is also wasting their time. The best use of your time is to find that kind of middle ground of help but not overkill. That’s what’s going to actually support their development. We know with autistic people that high degrees of stress actually diminish people’s abilities to regulate, limit verbal communication or communication in general, right? It creates like this, this cascade of issues. And so sometimes that urgency actually is so counterproductive. And that’s what I’m seeing a lot of parents telling me about quarantine, right as their kids were thriving. And they were like I didn’t, I was doing too much. And now they’re doing amazing. And it actually was that we were just doing way too much. And so you can waste time by doing too much too. So it’s really more is not better, in most cases.

Debbie Reber  37:57

Thank you for that. That’s a great reminder. So before we say goodbye, do you want to just let people know again? Maybe share … you’ve got Au Teach, your Tik Tok; I don’t know if that’s a handle or like other places that people can connect with you.

Robin Roscigno  38:10

Sure so on Tik Tok I’m, it’s just at Au Teach, Auteach on Instagram is Au Teach official. And then it’s www.auteach.com. I’m also on Facebook, you can find me there, it’s just Au Teach. And on the website is where I host all the courses. I have a mailing list and I also have a little community on there. If people are looking for, you know, more of an interactive thing. I have a parenting course that’s starting in two weeks. Enrollment is actually closed for that one, but I’m going to run it again and probably like a couple months. So people can sign up for that. It’s a six week kind of parenting intensive. And I also do individual consultations for families.

Debbie Reber  38:56

Fantastic. So listeners, I definitely recommend you check out all of Robin’s resources, and I will have links to everything. All the places to connect with Robin and her courses as well. As you know, we talked about a lot of different resources in this so they’ll all be listed on the show notes page. So Robin, it was so nice to connect with you. We spoke on a panel like right at the beginning of COVID It just feels like a lifetime ago but it was really nice to connect again and just thank you so much for everything you shared today.

Robin Roscigno  39:23

My pleasure and you know … same same. I love your work.

Debbie Reber  39:29

You’ve been listening to the Tilt Parenting podcast. If you want to dig deeper into this episode, check out the show notes page. Every episode has a dedicated show notes page on my website where you can get links to all the resources we discussed, read a transcript and even easily go back and listen to key takeaways by using the chapters feature on the podcast player to get to the show notes page for this episode, just go to tiltparenting.com/podcast and select this show. If you love this podcast and want to help cover the costs of its production, please consider joining my Patreon campaign. For as little as $2 a month you can help cover the costs of the hosting platform for this show, my wonderful new editor and producer Andrea and more. It’s so easy to sign up, just go to patreon.com/tiltparenting To learn more, or click on the Patreon link on any show notes page. If you’re into social media, you can follow tilt parenting at tilt parenting on Instagram and Twitter. Visit the Tilt Parenting page on Facebook or join my Facebook community called Tilt Together. Lastly, please help this podcast stay visible and easily found 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 visit www.tiltparenting.com

THANKS SO MUCH FOR LISTENING!

Do you have an idea for an upcoming episode? Please share your idea in my Suggestion Box.