Welcome to where parents talk. My name is Lianne Castelino. Our guest today are each mothers of children with autism and authors. Megan Ashburn is an educational consultant, a former teacher, founder of not an autism mom.com mom of four, including twins with autism, and co author of I will die on this hill. The book is co authored with Jules Edwards, a writer and consultant appointed to the National Institutes of Health, autism centers of excellence advisory board. She is a mother of three children with autism. Megan and Jules, join us today from Virginia, and Minneapolis, Minnesota respectively. Welcome, ladies, and thank you for being here.
Thank you for having us.
I’d like to start by asking you Megan, how would you describe your lived experience when it comes to caring for a child, in this case, children with autism,
my lived experience, we talk a lot about this in the book with different stories. It has been quite a journey of kind of getting a lot of misinformation and having a lot of confusion about how to support my autistic kids. And then, after finding the Autistic community, it really did help kind of help me kind of unlearn all of that and unpack a lot of the things that that I had learned in the beginning, I would say that every day is different, and that there really are just not enough services for families who are supporting autistic kids. So it’s, it’s definitely been a journey.
Jules, I’m going to ask you the same question, can you kind of illustrate for us what it’s been like to have three children with autism?
In a single word, I would say overwhelming. And all of my children are still very, very different. And they give a really great insight on like what the autism spectrum really means. Because autism is a social communication and sensory disability. And there comes some emotional regulation stuff in that as well. And each of them have such different profiles, that I really have to be a different parent for each child. When you know, there’s a lot of trial and error and a lot of learning that needs to be done in order to make sure that I’m supporting them the way that they need to be supported. And when I was diagnosed, I also had to learn about my own needs as an autistic person and my own profile, and how can I meet my own needs while also meeting there. So it’s just been quite the journey. And so now I try to make it easier for other families to have their own path.
Caregiving is a central part of your book, I will die on this hill. Megan, I’d like to start by asking you, what do you believe is missing? You talked about unlearning things through the course of your journey. What do you believe is missing from the conversation as it relates to caring for children with autism?
I really think a lot of the physical co occurring conditions that conversation is is missing all of the CO occurring conditions really, I talk in the book about being dumped into the autism trashcan after diagnosis. And basically that just means that once my kids were diagnosed with autism, it was as if nothing else mattered. And it was it was only treated as a behavioral diagnosis. When there are so many other curricular co occurring conditions that impact my children in different ways. Because just like Jules is kids, my kids are very different. They have very different profiles. And and I also feel like the communication aspect is not pushed hard enough and supported enough for families, especially especially for like a C access, which is alternative augmentative communication access. That part is missing as well.
Jules, you mentioned that you also have autism in addition to raising these children with a similar condition. Can you tell us why was it important for you to be part of writing this book?
It was important because a lot of the time autistic people are left out of the conversation entirely. There are giant organizations that are dedicated to supporting the artist ism community as a whole. And a lot of the time, we aren’t even included in conversations about our best interests. And one of the foundations of the disability rights movement is nothing about us without us. But somehow that escapes the discourse and the discussion about autism. So I feel like Megan and I have grown to have a really strong relationship. And being able to model what we’d like to see others emulate, is really important. So by being able to talk about our own experiences, and our own relationship, our own journey, and how we’ve we started in a tough place we didn’t get along when we first met. And we both had the humility and the willingness to engage in discussions about how can we make this world a better place for not only our kids, but all of the children out there who are not supported the way that they deserve to be supported? And the families as well?
Absolutely, Megan, now, your twin boys are about 10 years old. Or how old? Are they at this point?
Yeah, they’re nine,
they’re nine, almost 10. And so I wonder, looking back 10 years, obviously, a lot has changed in that time. But what in your estimation are some of the prevailing narratives around autism that you believe need to be changed?
I think that the the most important one is that autistic kids are broken, and that they need to be fixed. That is probably the most pervasive narrative that’s out there. And that’s been out there since I mean, since I even heard about autism, and that, and that, that autism is a tragedy and that autism has stolen the child from the family. I mean, I think those are the narratives that really need to change, like from the diagnosis day. Those are probably the biggest ones. Because once parents start unlearning that and finding the Autistic community, the adult autistic community, especially those who are non speaking, and those who are black and brown and indigenous, like jewels, like I feel like once once parents, find them, and see them and see them as adults, that parents can really start unlearning that type of narrative because it isn’t a tragedy, and it’s not an emergency. That’s another thing we talk about in the book. Jules does a great job at at just dispelling that myth that autism is some emergency that you have to get on right away. And it’s just not true because autistic kids develop differently than neurotypical kids, right? They have their own timelines, they learn things in their own ways, their own unique ways, and on their own time schedule. So I think that that those are probably the most prevailing
Jaws let me ask you, having you know, this condition yourself having children with autism as well, was it an advantage or a disadvantage that you’ve you’re living with this disease before you have those children? Or this condition, I
should say? Well, I guess I would say it’s not a disease, per se, it’s classified as a neurodevelopmental disability. And I don’t know if it’s an advantage or disadvantage for me, it’s just part of life. Yeah, that’s, I don’t think that it’s a strength or a weakness. I think that part of the the best part of the neurodiversity movement, and that is a movement that says, everybody has a different brain, and everybody is part of the neurodiversity movement, whether they are a neurotypical or a person with a typically developing brain, or a person with a neurodevelopmental disability. But I think all of the differences and humanity is what makes us stronger as as human beings because I have some really significant strengths as a person that a lot of other people don’t have. And I also have some serious difficulties that a lot of people don’t have like for me sending something in the mail is an accomplishment and I did it today for the first time in like two years I’ve mailed something. Yes. But it’s, it’s been interesting and when when we each got our diagnoses it for me, it was like The key to unlocking the supports that I needed, because I didn’t know that I was autistic until I was well into my 30s, I didn’t know my children were autistic. And when I found out I was like, Ah, now I can figure out how to better support all of us, because I just thought life was really hard, for no reason. And then with the diagnosis, I was able to understand things like executive functioning, which is like the planning and doing of tasks. And being able to find out workarounds for things or being able to assign tasks that I just genuinely can’t due to someone else. Being able to understand my own sensory needs, and you know, prevent, sensory overwhelm or have a plan for escape if I’m in an overstimulating environment. So having the diagnosis has been so instrumental in improving my quality of life. And it’s also been helpful for improving my children’s quality of life.
Megan, can you tell us what was the tipping point to get together with Jules and write this book?
Well, I guess I mean, so our publisher reached out to me because I have an online book club on Facebook. And it has about like, 11,000 members, and we discussed lots of books in there. So the publisher reached out to me and asked me, you know, would you like to write a book? And, and of course, you know, I am a writer. So I have like several books in the works, none of them are even close to being done. But this publisher is, is more with, they do more things with the autism community. So they they wanted it to be autism specific. And I mean, as Joel said earlier, like, it’s really important that when we’re talking about autism, or autistic people that we should be including them, if not even having them lead those conversations. So it really was a no brainer to ask Jules to, or to volunteer, well, Jules, to write this book with me, because we do. We do have, I would say we have unique perspectives in the community. And I don’t know, I think that that that was just a natural thing for us. And in the book, we invited several other autistic people to join us in the conversation. And that was really important for both of us to to make sure that everybody’s perspective, we’re not everybody’s, but there was a lot of different perspectives so that nobody was left out and in the Autistic community.
Jules, can you describe the darkest period that you have experienced as a parent raising children? Or maybe you had just one child at the time with autism? And learning, as you said, trial and error along the way? Is there a particular memory that comes to mind that was a particularly dark period? And what got you through that?
Vote? Well, that’s a that’s a good question. Um, honestly, the systemic ableism. That was the hardest part for me. For listeners who may not know what ableism is, it’s discrimination against people with disabilities. And sometimes it’s obvious, and sometimes it’s kind of built into systems. So for me personally, it was dealing with public schools for my son. And I detail that a little bit in the book, respectfully to him, of course. But he when he was in elementary school about the first and second grade, just two academic years, he accumulated, accumulated 169 pages of behavior referrals. And that is an excessive amount, and he was not a violent kid. He was not making threats. He was not hurting anyone. It was really just a lot of micromanagement of his behavior. I would get phone calls for standing on a chair, I would get phone calls for erasing and rewriting homework. But because he’s an afro indigenous disabled child, they were not focused on meeting his needs. They were focused on managing his behavior. And there were so many days that I would come home and cry and cry because I just wanted him to have a positive school experience. He went to school to learn and be supported in a positive environment. And I had to spend so much time fighting his school All to make sure that he had what he needed and so that he was understood. And at the time, we didn’t know he was autistic, nobody knew. He was just labeled a bad kid. And he was on that path path from that preschool to prison pipeline that occurs so frequently, especially for black disabled youth. And it’s, it’s something that we talk about in the book. But I also talk about it a lot. You know, whenever I can I do a lot of policy advocacy as well. But it’s just not right that our little kids, little kids are being targeted, and not building relationships with people who can really help them.
Absolutely. Megan, can I ask you the same question, a particular time period as a parent where you were struggling, trying to sort of meet everybody’s needs, while you’re learning about your children? While you’re raising your other children? Is there a memory that stands out for you?
Sure, there is there several, but I would say it was when the twins were really young, probably around three, neither one of them were talking by that point. And we were trying to get services, you know, we had gotten the autism diagnosis. And we were trying to get services for our family. So we, you know, our, the parent community kind of helped me figure out like different Medicaid waivers down here. In the US, we have waivers to help us get those services like attendant care, because my kids weren’t able to be in daycare at that time, because no daycare will accept kids that aren’t potty trained over a certain age. And it’s a very young age. So it was during that time that that I was applying for services, we were getting denied for services, because in Virginia, autism is just a behavioral diagnosis. So it’s not considered a medical diagnosis, which I know is just like, I didn’t even know this back then. And that’s something that we’re trying to change in Virginia to make make sure that those kids are getting the services they need. Because it is a medical diagnosis. It is it does come with physical and in lots of different co occurring conditions that that our kids need support and our families need support for. And so I think it was around that time and, and I still hadn’t even heard of the words AC yet. And that’s, that really just irks me so bad to just look back at like, how, how privileged I am. And you know, I’m educated, I’m white, I’m blonde hair, we had the best doctors, but nobody ever mentioned an AAC device to us. And so my kids were screaming a lot, and they were dysregulated. And they weren’t, they were they were unhappy. You know, I didn’t know about the sensory differences yet. So I was just kind of in a state of confusion, because once they were, you know, dumped into the autism trashcan, we just didn’t have any support. I didn’t have any knowledge. And I had not yet found the Autistic community and nor did I know that they even existed at that time. So I think that would probably be the roughest point in this journey.
Jules, can I ask you, when you look back on it, what would you say has helped you get through each step of the way here? Was there something in particular that was like an aha moment or game changing for you that really sort of empowered you to better understand you know, how to go about raising your children.
I would say finding artistic self advocates. There are so many autistic people who have done a lot of work to create resources for parents, and for other self advocates. For example, Samantha Kraft put together like a list of traits that a lot of people with autism experience and that helped with some insight and understanding of different behaviors. One of the difficult things about autism is that people do see it as a behavioral disability, rather than being social communication and sensory. So that means a lot of the time people are trying to manage behavior without understanding the underlying need. And my family is experience that when one of my children was very young, he did not speak. He didn’t speak until he was about six. So we had to use baby sign language. And we used other methods of communication. Because for a lot of autistic kids, they just don’t speak until later or not at all. And they need things like AAC or sign language or any other kind of tool that will help them. So being able to find resources out there, that autistic people who have already gone through all of this process, and who have done a lot of learning, that has been the most helpful tool for me as a parent, to learn from them, because I don’t have the same needs as my kids. So being able to learn from other people who have the same needs as my kids has been instrumental for understanding them and supporting them.
The latest statistics from the Centers of Disease Control in the United States show that one in 44 Children is diagnosed with autism. And the numbers are similar in Canada as well. Megan, when you look at this now, with all of the lived experience that you have, what would you suggest to a parent who may have just been given a diagnosis, or perhaps hasn’t had the diagnosis yet, officially, but has their own suspicions of what may be going on? What would you suggest to them as a starting point, for them to really get the proper information, the correct information they need, in order to build on a solid foundation for their family?
I would say to read autistic books to read books written by autistic people to to find blogs that are run by autistic people, especially those who are nonspeaking or bipoc Autistics, I would say start there. There are so many books out there. And that’s kind of the reason I started the book club and that the book club has been going on for so long. On my website, we have a book list for parents who are brand new to autism, like just the targeted booklets for them, because there is so much information out there. And depending on what direction you take, is the information that you’re going to get. So if you go down one path, you might get this information as you go down another path, you might get this information, but I think that the best information and the most valuable information is information given by autistic adults. And, you know, you’ll hear sometimes well, you know, these autistic adults are like my kid. And it’s 100%, right? They are adults, and your kid is like three or four or five. So they are not the same as your kid because they have had 30 plus years to, to adapt to this world to cope to learn those coping mechanisms, and to you know, get literacy, instruction and all of these different things. But I think that if parents start by learning from autistic people, first, they’ll be able to support their their kids, way better than than otherwise.
Jules, do you have anything more to add to that question? In terms of, you know, tips and strategies for parents as to where they can start?
Absolutely. So parents, a lot of the time when their child is newly diagnosed, they are afraid. And that is due to a lot of so called awareness campaigns that are built on trying to stigmatize autism, really. And so the public perception of autism is, is flawed. And a lot of the time the doctors who do evaluations don’t necessarily know the ins and outs of things, they might recommend certain therapies without understanding them fully. And so, it’s really important to have a thorough evaluation that looks for CO occurring conditions like learning disabilities. I am very, very satisfied with our evaluations because they drew out enough information for my children’s co occurring learning disabilities, that we could find the appropriate supports for them. We didn’t just put them into a behavior management program, which is what often happens for a lot of autistic children and then they’re not even sent to actual school to learn And they’re deprived of an actual education in favor of behavior management, or they’re put into self contained classrooms, which means they’re only around other children with disabilities. So parents, it’s very important for parents to question everything and do a lot of research before they commit to anything. I wrote a welcome letter to parents and I, it’s titled autism moon. And it’s meant to be a gentle reminder, like, take a big breath. It’s not an emergency, your child is still the lovable, beautiful person that you knew before the diagnosis, you knew who they were, before that piece of paper, ascribed a diagnosis to them, you know, what they like to do before bedtime, you know, what comforts them when they’re upset. So parents need to believe in themselves, and not be scared into doing things that they don’t feel comfortable with for their children. So I guess that would be like my biggest recommendation for parents with a new diagnosis.
The book is called I will die on this hill, certainly a striking title and attention getter. Megan, can you tell us what led to that title? And also, what do you want readers of the book to leave with?
The title stems from kind of a kind of our story of getting to know each other. In the beginning, we didn’t get along very well, I had a blog and, and Jules followed along with some, along with my blog. And anytime she saw something that she didn’t like, she, she would say, you know, your kids are gonna read this one day, you know, and, you know, you need to watch what you say about them. And, you know, I did not know anything about the Autistic community then. So I didn’t even know what she was talking about, because the doctors never mentioned my kids growing up being able to read, right? I mean, it was that dire, like, the doctors were basically like, sorry, you know, this is, this is how it’s going to be, and you just need to get the behaviors under control. So months went on, months went on. And then one day jewel saw posts of, of mine, and I hadn’t hadn’t seen jewels in a while. And we had both been on like, kind of separate learning journeys. And then she came in in and said something nice about a post that I made. And I was like, I can’t believe you said something nice to me, like, this is wonderful. And she said, Well, you know, it’s not that something something that you say are, you know, a little Yikes, but it’s not, it’s not a hill, I’d die on. So I had never even heard that phrase before. So when we were coming up with the books name, that kind of was like a natural fit.
So my biggest takeaway that I would like readers to have from this book is a sense of humility. And that’s one of those seven grandfather teachings or the seven sacred teachings of the addition of a people. So that’s one of my cultural teachings. And it’s very important when when you’re someone who is trying to support somebody who is not like you to be humble. And that is, it’s applicable to raising children who are not your own race, it is applicable to raising children with a disability. It’s applicable to raising adoptive children or foster children. As parents, we really need to be humble and learn what our children need us to be, rather than deciding. I’m the parent, I know what’s best you need to do what’s best, what I think is best for you. And one of the things that I love most about Meghan is that she reached out to me with this great sense of humility, and she’s like, Would it be okay, if I asked you questions sometimes when I’m having a hard time if I don’t understand something, and I was so thrilled, because a lot of the time disabled self advocates, ask parents, like ask us, if you have questions, we’re here to help. We want to help you and your children. But it’s not very common that parents, you know, reach out with that sense of humility and say, I would really like your help. So that’s, I think the biggest takeaway that I think that I would like to hear that readers have.
Megan, did you want to answer that question?
Yeah, I think I think that I would like readers to, to just know that there’s more than the medical model I’m because this book while it’s marketed to parents, in autistic adults, it’s really is for the greater community. Like, it’s for the neighbors, it’s for the people in church or whatever religious organization, I want people to know that the tragedy model or like the tragedy narrative is not the only narrative. Right and that there are other there are other conversations being had and that, that the medical model is only just one perspective, right. And I want people to just to open up to other perspectives and to know that there was more to say what they know and, and just to be open to learning.
Finally, for each of you, ladies, one word that you would describe where you currently are in your parenting journey, raising kids with autism, Jules, one word elated. That’s a great word.
That is a great word. Um, I would have to say, curious.
And can I ask each of you why you chose those words.
I chose elated because I have amazing kids. They are the greatest joys of my life. They’re also different, they have such different strengths. And I like who they are as human beings, their character, their values, their outlook. And despite any kind of struggle, I am so lucky to be their mom. Megan,
I’m gonna ditto what you said Jules. But I think I think as a curious just because there’s so much to learn. And there’s and I’m enjoying the learning and especially with with the non speaker community and the spelling community and curious if my kid will be like, you know, joining them on their spelling journeys, and I’m just curious to see just how everything is gonna, how everything is gonna go but a good curious like, I’m just, I’m just kind of excited to watch it all into into support at all. But I’m curious.
Megan Ashburn, and Jules Edwards, authors of I will die on this hill, mothers of children with autism. Thank you so much for taking the time to share your insight with us today.
Thank you for having us,
Migwhich Thank you