Meghan Ashburn and Jules Edwards on Autistic Adults, Autism Parents, and the Children Who Deserve a Better World
If you’re listening to this podcast, my hunch is you’re working hard to learn as much as you can about your child and the neurodivergent community. But the truth is, we are bound to not know some things and make mistakes. And I want to be the first one to tell you, that’s okay! There is no shame in making mistakes as long as we keep on learning and try to do better further down the line. My guests today are on a mission to show parents that there are different ways of approaching autism beyond what they’re told in doctors or therapists offices. Meghan Ashburn and Jules Edwards, co-authors of the book I Will Die on This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World, are making it really clear that there is no one size fits all for any families and that there is so much to learn from just listening more.
During our conversation, Meghan and Jules share their story of how they came together as an allistic parent of an autistic child and an autistic parent of an autistic child who had similar goals but had a bit of a rough start because they were going about it in different ways and from different lenses. And then we dive into some of the concepts they write about in their book, including disability justice, internalized ableism, self-determination over independence, the power of an “autism moon,” and things parents who earlier in their journey of navigating a diagnosis for their child should keep in mind.
About Meghan Ashburn
Meghan Ashburn is a continuous learner, educational consultant, parent mentor, and co-author of I Will Die On This Hill. She’s passionate about helping schools create more inclusive, accessible environments. Her online book club has over 10K members, and releases book recommendation lists on autism and neurodiversity. Meghan advocates for communication rights and inclusion at the local, state, and national level. She sits on her school district’s Special Education Advisory Committee (SEAC) and is a recent graduate of Virginia’s Partners in Policymaking.
About Jules Edwards
Jules Edwards is a neurodivergent Anishinaabe writer, gardener, accountant, and disability justice advocate. She is the parent of neurodivergent Afro Indigenous people, and care provider to many neurodivergent children throughout the years. Jules is passionate about building community and works to improve child safety and disability policy. Jules’ educational background includes a 2020-21 Leadership Education in Neurodevelopmental Disabilities (LEND) fellowship, 2021-22 Association of University Centers on Disabilities (AUCD) National Training Director Council trainee, and 2022-23 Wilder Foundation Community Equity Program cohort member.
Current roles include: care work of disabled youth, co-founder of Minnesota Autistic Alliance, board member for the Minnesota Ombudsman for American Indian Families, board member of The Arc Minnesota. She serves as the elected chairperson of the Minnesota Autism Council, a workgroup of the Senate Human Services Reform Finance and Policy Committee. Her culture shapes her worldview and decision-making, and she is committed to making the community a better place for generations to come.
Things you’ll learn from this episode
- What disability justice is
- Ways that allistic and autistic parents raising autistic children can work together toward our common goals for our kids
- The harms of a continual pursuit for “normal” in ways that don’t respect or embrace our kids’ neurodivergence
- Why self-determination should be the goal over “independence”
- Ways that allistic parents may be perpetuating ableism without realizing it
- What an “autism moon” is and why it’s ideal for families who are navigating a new diagnosis of autism
- I Will Die on This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World by Meghan Ashburn and Jules Edwards
- The Reason I Jump: The Inner Voice of a 13-Year-Old Boy with Autism by Naoki Higashida
- Raising Free People: Unschooling as Liberation and Healing Work by Akilah Richards
- Brain-Body Parenting: How to Stop Managing Behavior and Start Raising Joyful, Resilient Kids by Dr. Mona Delahooke
- Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children’s Behavioral Challenges by Dr. Mona Delahooke
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Debbie Reber 00:00
Tilt Parenting is proud to partner with Fusion Academy this season. Fusion Academy is the world’s most personalized school with one to one classrooms that match your student’s pace and preferences so they can learn better, dive deeper, and never get left behind. Learn more about the most personalized school in the world and how it’s changed the lives of 10s of 1000s of differently wired students, including mine at fusionacademy.com/tilt
Jules Edwards 00:26
And sometimes we tend to as parents have this view that we know what’s best. And instead of providing children information and allowing them to make decisions for themselves, sometimes we make those decisions for them, like a simple thing like adding an IEP goal that a student will learn how to tie their own shoe. What if that person doesn’t want to tie their own shoe? What if they would rather focus their energy on learning communication skills? Let’s let them decide what they want to do because there are plenty of adults who cannot tie their own shoes. And there are adaptive shoes out there who are successful in other areas of their life. So sometimes just let them have that choice.
Debbie Reber 01:15
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 if you’re listening to this podcast, my hunch is you are working hard to learn as much as you can about your child and the neurodivergent community. But the truth is, we’re bound to not know some things and to make mistakes, and I wouldn’t be the first one to tell you that that is okay. There is no shame in making mistakes as long as we keep on learning and try to do better the next time. My guests today are on a mission to show parents that there are different ways of approaching autism beyond what they’re often told in doctors and therapists offices. Meghan Ashburn and Jules Edwards, co author of the new book, I Will Die on this Hill: Autistic Adults, Autism Parents, and the Children who Deserve a Better World, are making it very clear that there is no one size fits all for any family, and that there are so much to learn from just listening more. During our conversation, Meghan and Jules share their story of how they came together as an allistic parent of an autistic child and an autistic parent of an autistic child who had similar goals but had a bit of a rough start because they were going about it in different ways and approaching it through different lenses. After they share their story, we dive into some of the concepts they write about in their new book, including disability justice, internalized ableism self determination over independence, the power of an autism-moon, and things parents who are earlier on in their journey of navigating a diagnosis for their child it should keep in mind, let me quickly tell you a little bit about Meghan and Jules. Meghan Ashburn is a continuous learner educational consultant and parent mentor. She is passionate about helping schools create more inclusive, accessible environments. Her online book club has over 10,000 members and released his book recommendation list on autism and neurodiversity. Meghan advocates for communication rights and inclusion at the local, state and national level. And Jules Edwards is a neuro diversion and Ashanabi writer, gardener, accountant and Disability Justice Advocate. She’s the parent of neurodivergent, Afro indigenous people and care provider to many neurodivergent children throughout the years. Jules is passionate about building community and works to improve child safety and disability policy. This is such a special conversation, I can’t wait for you to hear it. Before I get to that, if what I’m doing until parenting and the guests I bring on the show are providing support and encouragement and hope for your family, and you’re ready to dive deeper with me and uplevel your parenting progress. I invite you to join us in the Differently Wired Club. The Club is my most favorite thing I do here at Tilt and it’s really just an incredible community of parents raising complex kids like ours. We get together for virtual office hour calls, coaching calls, live calls with expert guests and authors. And we also dive deep into a different theme every month like noticing and observing scaffolding, co-regulation and advocacy. You can learn all about the club at tiltparenting.com/club So if you are feeling alone or overwhelmed in your parenting life, please join us. We are in this together. Go to tiltparenting.com/club to learn more. Thanks so much. And now here’s my conversation with Megan and Jules
Debbie Reber 04:53
Hey Meghan and Jules. Welcome to the podcast.
Meghan Ashburn 04:56
Thank you for having us.
Jules Edwards 04:58
Hello bushu, thank you
Debbie Reber 05:00
Yes, I’m so excited for this conversation before we hit record that your book, I Will Die on this Hill has just been kind of showing up in so many different spaces that I interact with and within the Tilt community. And so there’s a lot of excitement for this conversation and to bring you on to the show. So I would love it if you could kind of talk about your respective journeys and how you came to come together to write this book.
Jules Edwards 05:26
Sure, Meghan and I first encountered each other online, our children were diagnosed autistic at about the same time, I think it was the same year. And we both kind of went along our learning journeys a little bit differently. Because as my children were diagnosed, I was recognizing, Hey, that sounds really familiar. That sounds like me. And Meghan was getting information from the medical community and providers. And so she started her blog, not an autism mom. And I was kind of just participating in online chats and groups and stuff, trying to learn more. And I followed her page, because we’re about the same timeline in our learning journey. And a lot of what she was processing and writing was so familiar to me. But occasionally some stuff was kind of like, Hmm, sketchy, side eye that I don’t really like that. I think that’s wrong. And I would comment on the things that I was doubtful about or disagreed with. And one day, she called me a troll.
Meghan Ashburn 06:33
Jules Edwards 06:34
And it was upsetting. But then at the same time, I kind of took a step back. And she told me, you know, if you don’t like what I have to say, start your own page. And I did, very, very soon after that. And then she started following my page. But she didn’t know it was me, because for the first couple of years, I was blogging anonymously. And then one day out of the blue, I got a message from Meghan, and she said something along the lines of would it be okay, if I asked you what I have questions sometimes. And for me, that was like a victory. Like, we want parents to listen to autistic people. And I was kind of hesitant, but also very excited at the same time. Meghan, do you want to pick it up from here?
Meghan Ashburn 07:21
Yeah, sure. I think the biggest thing was like the information that we were getting was so different. And like jewels that I was basically only getting information from like the medical community, or the professional, ot community, or speech community, or knowledge base was just so different. And I didn’t know that at the time, because I didn’t know there was an autistic community to learn from. And I know how that sounds, now that I know that they’re there. But I just really did not know that there was that community to learn from. So I think that that just kind of led into us not seeing eye to eye and me not even being able to be on the same page as tools. Because I didn’t know that page even existed, I think it was, the reason I jumped was the first book that actually led me to the Autistic community. And it was like, Wait a second. This is a non speaking kid, just like mine. And he actually wrote a book. And just from there, I just started learning from different sources and seeking out different people to learn from and that kind of changed my trajectory. And like Jules said, I was actually following Jules’ page and didn’t even know it. But I was learning a lot from Jules at that time. And then Jules, one time commented on my page and was like, Ha, or something about like, this is a pretty good resource that you posted. And I was like, Oh, my gosh, like, you think that this is like the highest compliment you’ve ever given me? And I think that made Jules was like, kind of take a step back and be like, oh, gosh, I do like a lot of the things that she’s saying, but maybe I’m only commenting when I see something wrong. And then she said, You know, I do like your page and your page isn’t the hill I’d die on. And that’s kind of how we got the title horror book. Once we started really interacting and talking and I asked a lot of questions. And we even started doing small events together. We realized like there were so many more hills that we die on together. There was more things that brought us together than separated us for sure.
Debbie Reber 09:44
It is such a powerful story because I think it’s it’s also so relatable and it’s what I see kind of play out in so many groups is this division and you talk about this in the book, you describe that you’re both on separate hills, and our kids are on the bridge. There Is a quote that I pulled out: “This isn’t a time for healing. It’s a time for productive conflict, our children’s lives are at stake.” And that just felt so powerful to me, and really got to the core of what are we doing here anyway. And that’s what I think your book does so beautifully is really opens that door, this idea of productive conflict is applicable to really I think every aspect of our lives right now and the world we’re all living through right now. But I think what you said Meghan, too, and this is what comes up, and we’ll talk about this more, because you have a lot of ideas. But when parents first start this journey, if they don’t have autistic experience, if they aren’t autistic themselves, they don’t have that reference point. We don’t know what we don’t know. And as I was reading your book, I was thinking, I remember early on, you know, I am a research junkie. So I will dive deep into stuff, even the people I was choosing to learn from, there are all of these layers and unlearning and it does require a lot of intentionality. I’d love if you could talk about your vision for this book, and in writing it what you’re really hoping it does in the world.
Jules Edwards 11:05
I think Meghan and I have talked a lot about how we want the book to open and begin conversations. We don’t own conversation about conflict between disabled people, and abled people or caregivers. We just wanted to highlight some discussion points, we wanted to validate the experiences of people who were dealing with some difficult stuff. And at the same time, we want to share perspectives that will open minds, and hopefully lead to some progress. Because people are stuck. People are stuck in arguments and missing contexts and missing information. And we want to encourage people to look past their own experiences, and just keep those conversations going.
Meghan Ashburn 11:55
I think that it’s just important for people to realize that, like, their experience, is not the only experience. And that’s kind of what we tried to highlight with a lot of the stories that we tell because the stories are also different. Even with the contributors that we had in our book, like I can’t understand where another person is coming from unless I listen to them. That’s another thing we want people to do is just start listening to each other and in giving each other a little bit of grace. And give them the benefit of the doubt that they are trying to do their best. And maybe they just don’t have the information that you have. And so the more we can listen to each other, the more progress we can make, and the more we can kind of come together.
Debbie Reber 12:44
Yeah, I really loved the contributors that you included, they added so much to the book, and Kristy Forbes is someone our community loves and Kieren Rose and Tiffany Hammond. It was so nice to read those very just different experiences. And it did add such a different perspective and depth to the overall book. I wanted to just start around this idea of disability justice. So Jules, you wrote that by writing this book, you’re hoping that you’re swinging every parent in the direction of working toward disability justice, could you define that for us?
Meghan Ashburn 13:20
I can try. So Disability Justice is a movement that was developed by queer women of color, disabled women of color. And there are 10 principles behind it. And we touched on a couple of them in the book, but we didn’t get very in depth. Disability Justice is a movement that is moved by leadership of those most impacted so that means black indigenous people of color are leading movements towards justice for disabled people, it means we’re not leaving anyone in our community behind it means that we are supporting self determined lives where people can live the lives of their choosing with the support that they need and choose for themselves. It means safety for our community. It means inclusion, access to be out in the community. So it takes the disability rights movement a little bit further, because with the disability rights movement, which is fantastic and important. There were some cliffhangers there. So we want to make sure that our work is taking Disability Justice a little bit further along and introducing that term and that concept to people who may not have ever heard of it before.
Debbie Reber 14:38
So that was actually a great definition. Jules, thank you for that. That was within a section I don’t remember what the chapter of the book was. But you really dove deep into this way that functioning labels are propping up this capitalistic view of society and it was such a rich conversation and a quote that I pulled out from that you just mentioned, self determination really jumped out at me, predominant culture demands, we strive to be as independent as possible. Whereas many of us view self determination with support as the goal. And that is such a reframe. And it’s so counter to I think, just for those of us adults, growing up in these capitalistic societies in the West, it’s unquestioned, that the goal is independent living, you know, all of these things. And so I just love that reframe so much, is there anything you wanted to share on that self determination piece?
Jules Edwards 15:34
I would say that it’s very important to include self determination for children as young as possible. That means, including them in IEPs and IEP goals and accommodations at school. So a lot of listeners are parents, or most listeners are parents. And sometimes we tend to, as parents have this view that we know what’s best. And instead of providing children information, and allowing them to make decisions for themselves, sometimes we make those decisions for them, like a simple thing like adding an IEP goal that a student will learn how to tie their own shoe. What if that person doesn’t want to tie their own shoe? What if they would rather focus their energy on learning communication skills, let’s let them decide what they want to do. Because there are plenty of adults who cannot tie their own shoes. And there are adaptive shoes out there who are successful in other areas of their life. So sometimes just let them have that choice.
Debbie Reber 16:41
Yeah, tying shoes comes up all the time. And I’m always saying that is what velcro is for. That’s what slippers are for. I love that example. This very thing came up in a conversation I had with some parents last night and I brought up Akilah Richards’ book Raising Free People. I don’t know if that’s on your radar. It is such a wonderful book. She’s not raising neurodivergent kids in the same way. But she is really trying to push forward this idea that all humans have agency and autonomy, and they are not ours to mold. I just love that looping kids and as early as possible. And this comes up a lot with goals with therapies, interventions, what are we doing here? So I really love that. So what are some ways that allistic parents are perpetuating ableism without even realizing it? Right? So they think they’re doing the right things? They think they’re reading the right books, what should they be looking inward about in what’s happening in their own families?
Meghan Ashburn 17:39
That is a big question. That is such a big question. Because I know that’s something that I am constantly learning about even now. I mean, I don’t. It’s not that I have it all down pat, I just want to say, I am constantly trying to listen to people who are kind of like my son, I’m listening to non speakers, I am reading their blogs, I’m interviewing them. Because I think that even with a piece on disability justice that Jules was talking about, a lot of parents will see our book, especially if they’re parents of kids with really high support needs. And they’ll see our book and they’ll say, Well, I don’t have anything in common with these people that this book is not going to resonate with me because my child is non speaking, my child has high support needs, my child is incontinent my child is I mean, whatever it is, and I feel like those are the parents we really want to reach because we want to plant those seeds of you know, there is a different way to think about all of those things and to give your child as much autonomy as possible. Cole Sorenson is one of the contributors in the book, and he talks a lot about agency in being allowed to make mistakes. And Cole is an entire adult, right. And Cole is an AAC user cool as an advocate, and Cole has support people that help him all the time. And he talks about that in the book. And he hires his own support people and he makes it clear that I might make mistakes, I might do something that you think is not best for me, but I need you to allow me to do that. And I can live with that consequence. Right? helped me make the best decision for myself and let me make that decision. And then trust me to work out what happens and I think that that is such a mind shift for parents of kids with high support needs. Because we are always taking care of everything and we are always trying to not enforce but always trying to maybe cushion or make a better decision. And that’s not always the goal, right? We want to reach those parents and plant seeds that there is a different way and that independence is not the main goal. The main goal is autonomy and self direction and happiness and self confidence and enjoying life in their communities and having their communities be able to enjoy them.
Jules Edwards 20:18
And if it’s okay to pop in here, I just want to add, like when we think about disability, justice and leadership of those most marginalized, that includes people with high support needs. And it’s important to note that a lot of people who are kind of written off as low functioning, which is, by the way, a really mean thing to say about someone, it’s hurtful. But those who were labeled that way, are often most oppressed in terms of being able to make choices for themselves. And I think that’s something that we try to touch on as well. This book is not meant to be just for people who have twice exceptional children who are average intelligence or high intelligence, and who are speaking because Meghan is a parent of non speaking people, we included non speaking people, one of my children was a late speaker, we didn’t have access to AAC back in the day AAC as alternative and augmentative communication. We didn’t have access to that. So we use sign language. And we didn’t have the support that we needed. So we want to make sure that people know about the supports that are out there, and make sure that people are given opportunities that typically disabled people are denied. Well, in so many times, like we were saying before, I was listening to the doctors and to the professionals. And we just want to show parents and professionals that there is other information out there that there are non speaking advocates that are just trying to illustrate to them what they might not be able to see yet, or what they may have been taught will never happen. And to just show them that there are other resources out there.
Debbie Reber 22:11
Yeah, I want to dive a little bit deeper into parents who are maybe on the other side of the hill. But we’ll do that when we’re right back after this quick break.
Debbie Reber 22:22
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Debbie Reber 23:11
So as you’re saying that what’s coming to mind is something I imagine you hear a lot, and I definitely hear is parents who have kids who may have high support needs and say, but my child lives in the real world, they are going to have to know how to do X, Y and Z like that is something I’m sure you guys hear all the time, I can tell by your expression that you do so. And I think your book is trying to gently move the needle with those people. But what is the best way to get people who are so tunnel vision on their agenda and what this needs to look like? How do we start to push them to be more open to considering other possibilities?
Jules Edwards 23:48
That’s a really good question. I hear that quite a bit. The real world isn’t going to accommodate you. Well, the IDEA says they have to. So there’s that real world support does exist. It’s harder as people age, we have what’s called the transition cliff. So as a person as a child ages into adulthood, there’s a period of years, usually from late teens, early 20s, they call the transition years and during that time, services decreased quite a bit. availability to support decreases quite a bit. But services do exist. And we’re trying to increase access to those services and supports and it’s on the radar of a lot of people including parents who are worried about what’s going to happen to my child when there’s that train of thought that parents go down and they’re looking so far into the future sometimes that they don’t see what they need to do in the meantime. But services exist for example, like I have services as an adult. I have help with household stuff. I have help with sensory stuff, and communication support. And it exists there’s assistive technology out there that can help people I have, for example, a virtual assistant who helps with executive functioning stuff. There’s even AI out there that can help. There’s apps that help with ADHD-ers and executive functioning needs things like motion where you can schedule your day, there are new tools out there that can help you with functional communication, which is being able to communicate effectively with other people. There’s things like Chat GPT, can write a social narrative for you. That’s like one of my favorite AI tools that exists right now. And so the technology is out there, that’s going to help people become more independent. And I think we really need to embrace that, while at the same time, making sure that we have access to support staff as needed. I mean, the real world is changing, the real world changes all the time.
Meghan Ashburn 25:54
I love all of that. And I love all of the new AI and all of the technology that’s coming out, and Jules shares that with me all the time. But I also just want to bring it back to like right now, for parents who are thinking about that, like on a day to day basis to make their decisions. First of all, I just want to say that your kid is neurodivergent. And that means that their milestones, I’m going to use my air quotes, their development is going to be different, it’s going to be on a different timetable. And once you think they should be able to do this second, just because you are rushing them doesn’t mean that they are going to be able to do that, right, like trust that they will learn things, maybe a little bit later, maybe they have a spiky profile. And so the more you can support them instead of pushing them, right, like lifting them up where they are, and sort of pushing them to where they can’t do things right now, the less friction you’re going to cause if that makes any sense. I found myself doing a lot of therapies with my kids, and in that kind of mind frame of like, oh, gosh, they have to get this stuff or they’re not gonna be able to succeed in life, or whatever that is. But once I stopped all of the therapies, we just stopped. And I found my kids were able to really tap into their own native strengths, like what they were interested in, and taking all of that kind of outside pressure away from them. They really blossomed faster than I think they would have in that more pressured type of environment, if that makes sense.
Debbie Reber 27:42
Yeah. 1,000% I wanted to jump forward to a section in the book called Autism moon. I loved that. You’d say there’s baby moons, there’s honeymoons. There should be an autism Moon. Jules, I think this was the chapter that you had written. Am I right with that? So you offered suggestions about what parents can do when they receive a diagnosis of autism for their child and included breath. One of my most favorite things which I share with my community all the time, you said to get comfortable being uncomfortable, which is kind of like the tagline for parenting in general, I think. But I also love that you say before committing to any therapy or treatment, read about the history and perspectives of the practitioner, and autistic people and dedicate the first year after diagnosis to learning without committing to anything other than improving your child’s safety and quality of life. If there’s anything else you want to share about this idea, but an autism moon because I think it’s something that we don’t think we even have a choice to do. Because we get this information and everything’s urgent. Start this right away. If you want this outcome you’re behind already, and we just dive in not knowing what the heck we’re doing. So could you talk about this autism moon a little bit more?
Jules Edwards 28:53
Yes. And that’s the general idea of it is parents are often so panicked. The things that we know about autism are so alarming. There’s early intervention, the earlier you intervene, the better the off outcomes will be. Research is showing that’s not necessarily true. And any gains from early intervention are lost by the age of six. And I think that’s important to like, keep an eye on it. It doesn’t have to be an emergency. It’s not an emergency, the pressure is all external. And I know that when my children were younger, and we were struggling, all of the pressures that I was feeling from outside our home, I was unintentionally pushing onto my children. I was pushing that stress onto my kids and rather than being the shield that they needed me to be, I just became an exponential stressor. So if my son was at kindergarten, and he came home with a red light from the green, yellow red light stop sign in the classroom. I was disciplining him at home and not In a good way, I would send him to bed early. Why would I think that that would help anything? Did it make him comply with directives in the classroom? Not really? Did it teach him anything? No. So being able to take that time to take a step back, be the shield for your child, learn about what they need as an individual, that’s going to help everybody in the family that’s going to help your child and when a child is not stressed out, their behavior is better when they don’t have that pressure. So it has that effect as well. But honestly, I think it can be a beautiful time like reacquainting yourself with your child and learning about specifically what they need. It doesn’t have to be, oh, no, what do I do in the first 100 days? It’s not that. And it’s really important to learn about what am I inviting into my child’s life? Is this going to help them? Are there long term outcomes that could be harmful? I have opinions about different therapies. And I think, really making sure that a child is happy, healthy and safe. That’s all that really matters. All of those skill building things. It happens in its own time anyway. So just parents being able to make sure that the things that they’re doing for their child is helpful. That’s important.
Meghan Ashburn 31:26
Yeah, I’ll just piggyback on that. What all of what Jules said, is like, yes, yes, yes, but also recognizing how far from developmentally appropriate practices, our country has come, and probably in a lot of the rest of the world, that we are expecting our kids to do things younger and younger and younger, and it’s becoming the norm, when it shouldn’t be. So we’re expecting our kids to be able to read before they get to kindergarten, or to know all of their letters at the age of three, and we are constantly moving that bar back further down. And that’s not developmentally appropriate for any child. In early childhood, we only have one goal, and that is to protect their emotional health. And Jules’ autism Moon is just that, I mean, we are not in a rush. I don’t want this to be a smear against early intervention, because early intervention has its place. And early intervention is a fabulous program. For instance, when my older son was a baby, he had torticollis. And early intervention gave me access to care that I wouldn’t normally have gotten so early. But early intervention is not for developmental delays, right? It’s for the baby’s bodies are more pliable, right when they’re little. So if you have some sort of physical that needs support, then that is a great thing. And so I don’t want to disparage early intervention, but it’s not for autistic kids. Early intervention is not for that.
Debbie Reber 33:06
Yeah. And there’s something Kieren Rose wrote in his contribution about parents being sold the dream, right. And we’re always kind of striving for normal is what he’s writing about. And I think, as you were saying, This Jules, I you know, related to the coming home from school, and having all of these systems in place, and what happened at home dependent on what happened at school and my goodness, I wish I could have a do over especially, you know, I know you guys love Mona Delahooke’s work, if I had had that Brain-Body Parenting and Beyond Behaviors, when my kiddo was a little one would have been a whole different scene. But it’s really about our own discomfort, all of this, right. It’s about our own fears, our own concerns, our own worries about what teachers and other people are thinking of our kids and of us as parents. And I think that reminder, again, leaning into the discomfort or getting comfortable with the discomfort and taking that time taking that big pause is just so important. So I just want to encourage your listeners, if you’re early on in this process, just I hope you’re really listening to this and that reminder that there is no emergency here, your kids the exact same person they were the day before they got this identification. I’m getting through my questions. I do want to kind of start to wrap up. But I loved this chapter on artistic space that you wrote Meghan, and listeners, chapters are written from Jules’ perspective from Meghan’s perspective, and then these contributors. So it’s just such a nice journey through the book to kind of go through this nice way of shifting and growing our competency and our awareness of this. So I really love the format of that. And Meghan, in your chapter on autistic space, you shared some really wonderful reminders for parents who are new to autistic learning. I wanted to know a little bit more about why that was so important for you to include in the book such as, remember your purpose, listen first, second and third, speak last, all of those things. So can you talk a little bit more about your hope for that chapter.
Meghan Ashburn 35:08
I tried to throughout the book show where I kind of messed up and fumbled the ball. Because I want parents to know like, it’s not that you’re intentionally doing something wrong. You’re not being disrespectful, intentionally. But what I’ve learned from from my mistakes, I wanted to share with other parents and even give them grace, right throughout the book that yeah, I messed up a lot of times, I did things a lot of times, and I just want to share what I learned with them. And I think that coming into these conversations, parents are so everything is so urgent, and everything like they’re, they’re frazzled, and they want answers, and they want all of this information, and they don’t take the time to listen more and absorb more, and really reflects on their own biases. Because I know I had a lot of them and understand that you are coming into their space, right? You are coming into the disabled community. And instead of demanding that they serve you, right, because I mean, that’s kind of what I was doing. And a lot, a lot of times and a lot of groups, I see that all the time, I understand where the parent is coming from, because they are feeling rushed, and they’re feeling like they need the information now. But instead of demanding, like their labor, their free labor, do your own work to see what they’ve already given. Right, and to see what has already been said, because I can see in the forums and in groups that parents come in, and they ask the same questions over and over. And that’s only because they don’t know that other parents have asked them that over and over again. So just taking your time and looking at the resources that have already been provided and doing a lot of the work yourself. That’s kind of what I wanted to partake, or to give in that chapter.
Debbie Reber 37:13
Yeah, and I just want to also extend that idea of being uncomfortable to this conversation as well, because it can be really uncomfortable. If you’re in a group and you say something, and you get feedback that that was inappropriate, or you got it wrong. I’ll just share one of my learning moments, I used to have a Facebook group for Tilt, and there was a conversation. And I don’t I honestly don’t even remember the exact context. But there are a lot of autistic parents in that group who are wonderful members of the tilt community and do a lot of labor in there, or did the group no longer exist, but they would share a lot of their experiences, which was wonderful. And a parent had posted something that got a lot of feedback. It was very direct feedback, right? And I as the owner, or the manager, or whatever of this group, I always find myself trying to balance the comfort of the parents early on in this journey, and not wanting to feel shamed or judged, with how do we push them to learn without having them leave the group and not do that learning. And so I tried to intervene. And I realized through great feedback, actually, you can’t create a safe space. This is not a safe space, if you’re not allowing the voices of autistic people to say what needs to be said. And I was like, Oh my gosh, yes, I’m so sorry. But I really needed that experience to have to check myself and recognize how I was inadvertently kind of contributing to a dynamic that was not ultimately supportive. So it is complicated, but I just want to invite people if you’re listening to this to there’s no shame in getting it wrong. There’s no shame in making mistakes, there’s no shame and asking for help and committing to doing better down the road. So just wanted to put that out there.
Jules Edwards 39:06
Yeah, and there’s something to be said also for the fact that autism is defined as a social communication and sensory disability. It’s not behavioral, it’s not intellectual. It’s not learning. It’s social communication, and sensory. So when we’re interacting with autistic people, we have to understand that their social and communication disability is going to impact our interactions. And so we have to extend some grace. Pragmatic language is not necessarily a strength of autistic people. Some people have great pragmatic skills, and some people have worked really hard to develop those skills. And in the book, we even tried to give people ideas, autistic people ideas and how to be more effective in these conversations. If they want to develop those skills. without the pressure of having to communicate this way. Otherwise, no one’s gonna listen to you because it has to kind of come from both directions, autistic people who want to be effective and advocacy, sometimes we have to develop some skills that don’t come naturally to us. And at the same time, non autistic people really need to extend some grace in communicating with autistic people. It has to come from both sides.
Debbie Reber 39:06
Yeah, I mean, it’s really what your whole book is about ultimately, is we all have the same goals, which is helping our children thrive and be successful. Megan, the last thing, quote that I had pulled out, which I think is from the very end of the book is autistic people, mentor parents to protect autistic children not to protect our feelings. And I just love that so much. And I was like, Yeah, I think a lot of parents might not get that. They might not understand that that’s actually the goal. But that is the goal. We want to support our kids. That is the bottom line.
Meghan Ashburn 40:55
For sure. And I think that it’s also important to note, like, I’ve had many occasions where I have asked a question or where I’ve asked for feedback. And sometimes I feel like parents are looking for validation. Because I know, sometimes I was, you know what I mean, I’m looking to be supported as well, and parents do need support. But parents should not be looking for support for themselves from the disabled community, right, they should be looking for support on their own. And when we’re interacting with the disabled community, we’re doing that for a purpose, not for our own validation. I actually made a post in a really large group about, you know, I was on the path where I thought I was getting it right, I thought that I had shifted my mind frame, I’m trying to nurture their mental health or emotional health, not pressuring them. But we did an Easter egg activity. And I took a picture of the kids. And they didn’t smile one single time, while we were doing these Easter eggs, right? They were doing it, they were engaged, but they didn’t smile one time, and one of my children makes a fist when he’s nervous, or when he’s stressed out. So I went into the group, and I said, Oh, my gosh, I’m trying to do things right. What did I do wrong? How am I stressing them out? And I got answers that I was not prepared to get, you know, I was prepared to get like, Oh, you’re doing a great job. Kudos to you for doing this activity. But that is not what I got. What I got was, why are you expecting them to smile at you? Why do you need them to smile when they’re doing an activity with you? Why can’t they just be concentrating? And if I had not checked my ego at the door, right? I would have gotten offended by what they were saying. But what they were saying was so right. It’s like, why do they have to pay you with smiles? Megan, do you smile when you’re doing your artwork? No, you do not smile? Do you smile when you’re reading? Or do you smile through your gardening projects? No, we don’t do that. And so yeah, that’s just one instance of me kind of having to check my ego and come at it with some humility and saying, oh, gosh, you are right, even though it kind of wasn’t what I was looking for.
Debbie Reber 43:21
Yeah, it’s a great example. I’m sure that one that many listeners can resonate with. There’s so much more we could talk about, I’m really mindful of the time we’ve gone way over. So first of all, I want to thank you for going with me and my rambly brain on this journey through your book. But is there anything that we didn’t touch upon, that you would want to make sure our listeners take away or something? Yeah, just some last thoughts for them.
Jules Edwards 43:44
Typically, we talk quite a bit more about racism, and how that impacts our children and black indigenous people of color, or children of color. And families. We didn’t get a lot of time to talk about that today. But we do talk about it in the book, we talk about it on our blogs, I guess I just want to add like nothing is one size fits all. And we also need to incorporate cultural humility in how we approach supporting our children. And not every not every child and family needs the same thing.
Debbie Reber 44:18
Yeah, and before I go to your final thought, Megan jewels, you have a great chapter on productive conflict. And you really do dive into cultural competency. I think it is really important that you direct parents of non dominant cultures and ethnicities to turn to autistic advocates from those specific communities. Because there is a lot of talking and this idea that there’s a one size fits all. So that is a great chapter and also so relevant to again, kind of the bigger what’s happening in general in terms of intersectionality and conversations about race, especially within the neurodivergent community. So thank you for bringing that up. Megan, anything you wanted to share before we wrap up?
Meghan Ashburn 45:02
I guess my only last thought is always kind of the same thing. While autism is not an emergency, we do want to stress that access to communication is very important. And we should be doing that as young as possible. So even if it’s not high tech, AAC apps, giving them as much access to communication as possible, is really important. And there is no age that is too young for high tech AAC, we want to make sure that parents are offering that type of support to their kids, because that’s part of supporting their emotional well being.
Meghan Ashburn 45:41
That’s great. Thank you. Thank you for that. First of all, I just want to again, thank you for coming together in this way. And I guess I want to know, sorry. It’s just too personal. How’s your relationship? Are you guys besties? How are you navigating your doctor? And yeah, just curious, because you’ve obviously been through a journey together.
Jules Edwards 45:59
Well, Meghan voluntold me to write this book. She kind of did, but she knew that I would be on board. We kind of discussed it in passing, I think. And then I was voluntold. Very excited about it. No, we get along really well. I was like…
Meghan Ashburn 46:19
I remember that time at four in the morning when we were texting that one time. Let’s do that.
Jules Edwards 46:25
And it was fun. We’re having a good time. I love seeing Meghan in person, on the occasions that we can see each other in person. But yeah, we talk regularly, we’re friends. And we work really well together.
Meghan Ashburn 46:40
Ditto to all of that. I do think that we work really well together. And our work is our life. It’s kind of like one of our really big interests. And we have a great relationship. I think working and personal. We give each other a lot of grace. And we do a lot of supporting each other, like where one may be lacking the other one kind of steps in.
Jules Edwards 47:06
Yeah. Meghan bullies me a little bit though. She really does. She goes to the beach regularly without me. And that hurts my feelings a lot.
Meghan Ashburn 47:16
Guilty as charged. Yes.
Jules Edwards 47:18
I live in the Midwest where it is very cold and she lives by the beach.
Debbie Reber 47:23
I could see how that would present challenges. So I appreciate you humoring me with that question. Because your relationship is such an important piece. And it’s beautiful to know the origins of how you came together. And how powerful this relationship collaboration has been I imagine will continue to be so it’s just awesome. And I just want to remind listeners, the book is called I Will Die on this Hill: Autistic Adults, Autism Parents and the Children Who Deserve a Better World. I will have links to that and all the places where you can connect with Meghan and Jules on the show notes page. So thank you so much for everything that you’re doing and for this conversation today.
Debbie Reber 48:01
Thank you for having us.
Meghan Ashburn 48:02
This is amazing. Thank you.
Jules Edwards 48:05
Debbie Reber 48:09
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