PDA Autism Parenting: The Data That Proves You’re Not Alone (Guest PDA North America)

Chantal Hewitt (00:00) I'm sitting down with the team at PDA North America to talk about something that really matters. What the research is actually telling us about raising kids with a PDA profile. We get into four key findings that I think every PDA parent needs to hear. that PDA characteristics show up consistently across all age groups, that punishments and consequences actually make things worse for 94 % of children, according to parents. that school refusal and difficulty accessing education affected 88 % of PDA kids, and that when it comes to therapies and support, there is no one-size-fits-all answer. This is such a validating conversation if you've ever felt like the standard approaches just don't work for your child. Because the data backs you up. Let's get into it. Chantal Hewitt (01:19) Hello and welcome everyone to another episode of the Attune Spectrum podcast. I am so grateful today to have two of the authors and researchers of the PDA Experience Report from PDA North America. So today we will be welcoming Melissa McKenzie and Diane Gould onto the show. I need to share one of the most impactful quotes from the PDA Experience Report, from how I see it. So I am giving credit at the moment. So this is authored by PDA North America within the PDA Experience Report. The message from these surveys is clear. Families are navigating PDA with high stress, uneven recognition, and supports that too often miss the mark. formal diagnosis and affirming treatment remain rare. PDA individuals and their families are often misunderstood and suffering. And it is because of this specific statement and how it resonates with myself and with everyone listening and all the work that PDA North America is doing, as well as so many others and organizations around the globe, that this conversation is absolutely necessary Melissa McKenzie, PhD, is a formal clinical psychologist and current homeschool parent who discovered in adulthood that she is ADuDHD PDA, and twice exceptional. With a background in research and clinical work focused on aggression, self-harm, and suicide risk, she now brings that perspective to neurodivergent advocacy. research with PDA North America and the development of a homeschool program in North Atlanta. We also have with us Diane Gould. Diane is a licensed clinical social worker that specializes in serving autistic individuals. As the executive director and founder of PDA North America, she founded the annual PDA North America Conference held in Chicago that has changed the lives of hundreds of PDA, pathological demand avoidance or persistent drive for autonomy families. She has also co-authored the book, Navigating PDA in America. with Ruth Fidler, which was published in June 2024. In April 2024, was diagnosed as autistic. Diane has a private practice in the suburbs of Chicago where she serves neurodivergent children, adults and their families. Over the last 40 plus years, she has worked for both private agencies and school systems. Diane has always been fascinated by human behavior and has worked to better understand and support individuals with distressed behavior over the years. She currently focuses her practice on providing consultation and training, working primarily with parents and regularly attending school meetings alongside them. Diane loves to train educators and therapists so they can better serve their students and clients. It was this understanding of behavior, autism, and the supportive approach in the PDA literature that first drew her to learn more about PDA. and learning about PDA led her to begin the new PDA movement in North America. Diane formed PDA North America at the first American PDA conference in March 2020. Diane Gould (04:32) Thank you. Chantal Hewitt (04:33) Okay, and without further ado, I am going to pass this over to Melissa McKenzie. Melissa, did you want to, tell us a little bit more about yourself, maybe your mission within your research or in your family life and your personal life and... Yeah, we'll just dive into these really impactful findings within the PDA experience report. Melissa McKenzie (she/her) (04:54) Yeah, well thank you for having us. I'm excited to talk about the survey. I was telling Diane a little bit earlier, I'm like, I will talk to everybody about the survey. I think it's just such an important piece of information that families need. I think that treatment providers need it, educators need it. I know there are people who are in our corner supporting us and to have that documentation I think is a huge step so that people have something physical they can hold on to and say, okay, I'm not alone. Thousands of other people have reported similar experiences. So yeah, I'm happy to chat about it. I have been in the PDA space for probably, I think about three years now, just kind of navigating it with my own family, figuring out the educational piece of things, how we accommodate nervous systems that need certain just. certain aspects of life that are not the typical box that we all think that everything should fit into. So I, about three years ago, I went to the PD North America Conference for the first time, and I've been nudging Diane ever since to let me do some research. So yeah, last year, we put the survey together, we've got a few thousand people responding. And so now we're figuring out, okay, how do we get this information out there? What are next steps so that we can keep the ball rolling? Hopefully get Diane Gould (05:54) He Melissa McKenzie (she/her) (06:08) you know, some people in the research space to join us. So if there's anybody listening that has an interest in that, feel free to reach out. So. Diane Gould (06:13) Yeah. Absolutely. Chantal Hewitt (06:16) That's awesome. Thanks so much, Melissa, for that intro there. Before we jump into those findings, Diane, would you like to introduce yourself as well? And then we can dive right on into the biggest passion at the moment, I think, within this conversation, which is understanding PDA and supporting those who are PDA in the families who are doing their absolute best to make life and their nervous systems a bit easier and sustainable. Diane Gould (06:46) Yeah, I think, you know, maybe to start with just the whole PDA effort started the way I think everything starts with a mom who wouldn't take no for an answer. I had been working with a family of a young adult with a autism diagnosis and she found PDA and kept sending me article after article until I would pay attention and really read them and As soon as I did, was like, this totally makes sense. And I got trained from somebody in the UK on PDA and then decided to see if I could hold a conference. I think what blew me away then is really what still impacts me now is that families from all over kind of tell the same stories. They describe their child so similarly, their struggles so similarly, and it just seemed like something needed to be done. So I just did PDA North America on the Side as part of my private practice for the first couple years, but now we're nonprofit and growing so quickly, and we don't really have time for fundraising, but that will happen one day. but I'm delighted at the growth and the interest and the support because our community is so strong and wonderful. And people like Melissa have come forward at the conference to help. So it's made all the difference. Chantal Hewitt (08:08) That's great. And it does, I think just that coming together and even just hearing you talk about the growth and, and I actually loved what you said about, know, it started with a mum who wouldn't take no for an answer because I also hear that and like personally that that was me. And then with the families that I support within my raising PDA and just within our local community as well. It's there's so many Diane Gould (08:25) Yeah. Chantal Hewitt (08:33) like factors at play. And that's why I loved the PDA experience report because I think it's really hard to find evidence because it is emerging within, you know, the research community that not only is like academically sound because I think a lot of people still are looking for that, but they're missing the piece on the fact that PDA individuals, especially those late diagnosed or like Diane Gould (08:43) Yeah. Chantal Hewitt (08:56) late realized PDA individuals, they've been left out of the conversation or just realized their neurotypes so late in their life. So I think that's, it's just so important that you've, you've done these surveys to actually gain this lived experience perspective. And I love how it's across from like childhood age group up to like that 18 and then plus. Diane Gould (09:05) Right. Chantal Hewitt (09:21) I will pass the conversation over to Melissa. Melissa, would love, and I'm sure the listeners would love to know what you have found to be the biggest, I guess, biggest eye-opening shifts from the research. Melissa McKenzie (she/her) (09:35) Yeah, absolutely. probably the first thing to hone in on, one thing that was a big goal, we had a lot of big goals in trying to figure out what to put in the survey. And the problem was how do we narrow it down so that we don't have an insanely long survey for people to fill out. But one of the main things that we really wanted to target was what does this actually look like? One of the things I think in the research space that people are struggling with is, How do we define this? How do we measure it? If we are going to try and diagnose this, how do we do that? And so we wanted to put together what we thought were some of the core characteristics that we've seen in the literature so far, in our own experiences, to see whether or not there was a consistent. portion of characteristics that people were identifying with. across the board, we found a fairly cohesive identity around what PDA is like for a lot of individuals. And the two things that really stood out, which for us was not really surprising, but again, it kind of helps to solidify this is real. You know, one of the things was the struggle to do things that we're, you know, feeling pressured to do. but also the amount of people who identified that punishments and consequence-based outcomes made things worse. And so for me, that was one of the biggest things. I know in the under 18 group, we had parents reporting on the experience for their children, and 94 % said, we present punishments, if we present consequences, that typically makes things worse. And that goes against so much of the behavioral model that people are exposed to when they go in to try and get help from a treatment provider. And so that one to me, I'm kind of like, you know, let me just scream that one from the rooftops, like, guys, we have to really take a completely different approach to thinking about this. If 94 % of these parents were like, no, this makes it worse, this is not working. So I get a little, you know, a little excited when I say it. So ⁓ I would say from Diane Gould (11:36) Yeah. Melissa McKenzie (she/her) (11:37) from that perspective, knowing that the variety or the majority of people across the board were saying like, yes, this is a cohesive identity. This isn't just one person saying like, I don't like it when you tell me what to do. This is a lot of people who are internally struggling with demand and that pressure. Diane I don't know if you want to add anything to that. Diane Gould (11:56) Yeah, that's perfect. I think that's perfect. Chantal Hewitt (11:59) And it's funny, well not funny, but as you were speaking to that point, Melissa, I actually was taking little screenshots on my phone because so much of like, and the biggest screenshot that I was like, I need to make this my screensaver was, and it had to do, I believe with that really high percentage, that 94%, I'm going to be incorrect there, but it was that parents are finally saying that I, that there were other people. Melissa McKenzie (she/her) (12:07) You Diane Gould (12:14) Yeah. Chantal Hewitt (12:25) who are experiencing this within their child. And there were the words that I had screenshot that said, feel like this is believable. Like somebody actually believes me or it could have been that they didn't feel believed. And I think that piece, that validation, at least from my perspective, it's just so important when you're working against a lot of really experienced and trained professionals who Diane Gould (12:27) Yeah. Chantal Hewitt (12:50) may not have the skills and the training. They may have the really nice intentions, but so much of what professionals are trained in and know is that behavioral aspect. And a lot of parenting as well kind of is embedded within that. And yeah, so I just thought that was really nice to read as a parent myself within the report to go, like it's it's not something I'm doing. It's it's decided doesn't get it. Yeah. Diane Gould (13:11) Right, right, right. And professionals, know, my professionals, so I can say this, mean, professionals have a history of blaming parents for their child's behavior. And, you know, that does a lot of damage. And, you know, we do an annual conference every year, which is how we started, but now we've just finished our seventh. And I think the power of the conference is for parents to be in a room with ⁓ hundreds of people or on Zoom with 500 people, just who have similar realities. And that's so validating. It feels so seen and, know. Yeah. Yeah. Melissa McKenzie (she/her) (13:57) Yeah. As a parent who was at that conference for the first time three years ago, I had just dipped my toes into what PDA was and needed to do my deep dive, needed to figure things out and was debating like, do I fly out to Chicago for this conference? then ended up doing the Zoom version. But it makes a huge difference when you feel like you're not alone. Like so many people in your Diane Gould (14:21) Right. Melissa McKenzie (she/her) (14:24) sort of immediate world might look at things and be like, wow, you're not being tough enough or you're doing this wrong or you need to shift your perspective. And it's like, no, in my bones, I know that something is happening. And then to have other parents just get it, it's amazing to have that community with that kind of a message. So I agree. Diane Gould (14:35) Yeah, all right. Yeah. Chantal Hewitt (14:46) And you guys did that with your report and with your conference, with just like pats on the back that is so special. And you're welcome. I'm, yeah, I just love the work that you're You're welcome. Melissa McKenzie (she/her) (14:48) Hahahaha Diane Gould (14:50) Thanks. Thank you. Thank you. We're proud of it and excited by it. I mean, it's such a privilege. Chantal Hewitt (15:01) Mm. Melissa McKenzie (she/her) (15:05) Mm-hmm. Chantal Hewitt (15:06) it is. and something else that I hear so often because PDA, it's amazing, we've got this upcoming research and your research that you've done here is showing that there are so many traits that everyone is experiencing or sharing. Hey, like this is real, this is what it is, this is what my child is experiencing. what I'm experiencing as a parent, if you're a PDA parent yourself. And something else that I hear is, does PDA exist within the autism spectrum? Does it exist alongside ADHD? Are there other comorbidities that exist within that? I also support a lot of families who, their teenage children have had an oppositional defiance disorder diagnosis. So I think there's just a lot of... I don't know if it's lack of clarity or the research is just still being done, but I would love to know, Melissa, if you could speak to that within the research. What have you found there? Melissa McKenzie (she/her) (16:05) Yeah, we, this was another area where we really wanted to make sure we had something to say, you know, it's a really complicated space because you're talking about, from, you know, a research perspective, you're talking about trying to operationally define a human experience and we're not inside the human. can't really, you know, test it the same way we would, you know, like let's go get a blood sample or, you know, X, Y, and Z. So we're limited in how we kind of theoretically construct different ideas and then we have to measure that based on different characteristics. And across the board, you hear people all the time say, okay, well, is this a profile of autism? well, my child has ADHD, my child has OCD, my child struggles with sensory processing, my child is 2E or gifted, and you have all of these overlaps and then you have to kind of figure out, okay, well, Are they just overlaps? know, is it somebody who's experiencing two different things at the same time, or is this all part of the same construct? And we're definitely not there where we can, you know, with any confidence, say something that specific, but we did want to look at for the families who were filling out our survey, how many of them were experiencing characteristics that may fall under a different diagnosis as well. And so autism, Diane Gould (16:58) Right. Melissa McKenzie (she/her) (17:21) ADHD, sensory processing, those were our highest ones. ⁓ The majority of participants, especially in the under 18 sample had said that yes, they had received a diagnosis of autism as part of an evaluation and or ADHD symptoms. So those were the two primary ones. And that seems to be what I think anecdotally we hear in the space as well, that there is a big overlap. So, yeah, I think that there's definitely more work that needs to be done there, but at least we have kind of a baseline to say, yes, this is an overlapping experience for a lot of PDA families. ⁓ And then speaking to the ODD piece, that one's a little bit harder, I think, to comment on because probably what's happening at this point, you have families who, if they are going in for an evaluation, and Diane, add to this, please. in my thought, you know, if, if you have somebody going in for an evaluation and they're completely missing the neurodivergent piece of this, they might fall into an ODD category and then they might not receive the education and the information about, about neurodivergence. And so I think in our survey, we were probably limited in some ways because the people filling our survey out were people who were already familiar with PDA. Diane Gould (18:42) Right. Melissa McKenzie (she/her) (18:43) and the neurodivergent aspect of that. So that one, I do think that there's definitely more work to be done there to tease that apart. But yeah, I wouldn't want to comment on that one as specifically. Diane Gould (18:50) Right. what we do know is that it seems that more black and brown children in America are much more likely to be given an ODD diagnosis and not have their neurodivergence looked at. And it's tricky because I used to kind of say, no one should get that diagnosis. It's never helpful. But You know, some people have pointed out that's the only diagnosis available to certain segments of the population. So we just have so much work to do. And also even with autism specifically, not as much ADHD, not everyone has access or can afford an evaluation for autism. And still so many examiners or testers only identify the more stereotypical, obvious presentation of autism. So we have many PDA kids who were kind of told that they, or their parents were told. couldn't be autistic because they make eye contact because they're so socially motivated and so verbal and creative and all that. even getting that autism diagnosis is still hard for many people. Melissa McKenzie (she/her) (20:17) Yeah, yeah, I think the survey itself provides like a very early snapshot that will allow us to ask some more involved questions as we go forward, I think is how I look at that co-occurring condition section of the report. Diane Gould (20:22) Mm-hmm. Absolutely. I agree. Even though the numbers were pretty high about how many people have multiple co-occurring conditions. Right, right. So and I do, you know, just see that in the PDA community as well, which further complicates the presentation and the lives of PDA people. Melissa McKenzie (she/her) (20:33) Mm-hmm. Yes, not just one or two. Chantal Hewitt (20:53) Yeah, thank you for sharing that. It's just reminding me, the other day I mentioned, as I was told, all of my alphabet diagnoses to somebody. And I was like, well, yeah, it's actually really helpful that, yeah, I might have all the alphabets and my children might too, but if we aren't talking about these things and aren't engaging in these conversations, how do we begin to make sense of them? Diane Gould (21:01) Yeah. Yeah. Chantal Hewitt (21:17) And just because, yeah, I'm not sure your experience and we probably won't have time to go into this, but I think it just comes back to that validation piece and believing what people are saying who actually experience this within their children, within their adult children or just within themselves and in everyday life. Yeah, so that belief and that validation and that community and coming together. Diane Gould (21:17) Yeah. Mm-hmm. Melissa McKenzie (she/her) (21:27) Yeah. Diane Gould (21:36) Yeah. Chantal Hewitt (21:41) That's why I love this research because it is so needed and yeah, thank you. And something else that I think the listeners would love to know, Melissa and Diane, is about treatment. And that can kind of be a little bit controversial, at least from the parents that I support and within our listener base. What in your professional opinions has come from the research about treatment options, if any, and the perspectives of those who have engaged? within different treatments for their child or for themselves or, yeah. Melissa McKenzie (she/her) (22:14) Mm-hmm. I will say this was probably one of the hardest areas to analyze with the survey results because it is so complicated. know, we, again, so much of this was just like a lay of the land snapshot, but we wanted to include as many different treatment modalities as we could that we know a lot of PDA families have exposure to. And then also just kind of briefly gauge Was this helpful? Was it not helpful? Knowing that there's all of this complexity around, you know, was a child in burnout at the time that they were receiving this treatment, you know, information about the provider, information about how long they engaged in the therapy. So it was fairly complicated to put the results together, but in general, what we found was that across the board, families are finding things unhelpful to helpful. And, you know, it makes sense. One of the things that we did see as far as the treatments that were most often tried, medication management through most of the time it was through a psychiatrist, and then also occupational therapy, those were the two for under 18 group were most commonly utilized. And I would say they had a fair amount of ⁓ individuals who were identifying that as yes, it was at least moderately helpful. We did have some people say that those weren't helpful strategies. But for all of our other modalities that we looked into, we looked into different types of talk therapy. looked into, you know, we tried to look into more niche therapies, know, equestrian therapy, art therapy, different emergency room, inpatient services. For the most part, it was across the board. You really couldn't find a pattern. You had just as many people saying helpful versus unhelpful. The one area I will mention with most of the more, I guess I would say, hospital-related treatments, individuals who had tried to access emergency room services, any inpatient treatment, they tended to list that as more non-helpful than helpful. And I think that that probably makes sense. Again, we need to do a deeper dive on the why there, but, ⁓ you know, those are typically situations where a PDA or in a PDA family, they're going to lose a lot of autonomy and a lot of ability to make decisions for themselves because they have moved into a hospital system that typically is there to keep you safe and to, you know, restrict certain access to things. And then ABA was another one that I know is controversial. but that more people tended to say less helpful versus helpful. So yeah, it was tricky to kind of make sense of that, but it seems like we just need more information about for those people who were finding these services helpful, what specifically about that was helping and how do we make sure that treatment providers continue to do those specific things. Diane Gould (24:56) Right, and teasing out kind of the provider from the modality, because it really comes down to the human, the person, the relationship, the connection. Understanding PDA is very helpful, but some people just by who they are as a human, you know, can connect with PDAers because they're genuine and flexible and they partner and collaborate. So I think that, you know, Melissa McKenzie (she/her) (25:00) Yes. Diane Gould (25:25) Hopefully it will be something we can look at as the characteristics approach of therapists that work for PDAers. And maybe we'll find them across modalities. It'll be interesting to see. But it's a hard thing to pinpoint. I do want to say for parents of PDA children, it's very hard not to send your child to therapy. Melissa McKenzie (she/her) (25:42) Mm-hmm. Diane Gould (25:51) ⁓ because everyone tells you if your child's struggling, need to, but if your child doesn't have the bandwidth for therapy, if there's not a therapist in your area who is the right fit, then ⁓ I'd like to take that pressure off families. You can be a very good parent and not send your child to therapy, too. And it's just not possible for everyone. Chantal Hewitt (26:16) Thank you. Melissa McKenzie (she/her) (26:16) which I imagine is something that people are like breathing a sigh of relief and hearing, you know? In so many situations, yes, there's access to therapy, but I think deep down in their gut, a lot of families are like, that's just not the right fit. And we're trying to show up every week and make this connection that could be making things harder, you know? Diane Gould (26:20) I hope so. I hope so. Right. And we're also, you know, very clear, especially at PDA North America, you know, therapy is not to make someone less PDA or less neurodivergent. We're not trying to fix the child. And I say to parents all the time, you know, sending your child for therapy, if everything in their life isn't PDA affirming is not going to be helpful. It's really for every adult who interacts with that child to understand them. There's no like sidelining that in the process. Chantal Hewitt (27:11) Thanks, think that's honestly like that is one of the missing pieces that I see all the time, specifically within education, when it's, you know, you've got this one perspective of, managing a classroom or you've got the other child's needs in this. And my biggest frustration is exactly what you said, Diane, is, if there aren't... systems and supports in place that are PDA affirming, if the educators and those who are around them, even the children, if they aren't hearing this language, it doesn't need to be scientific, but just that we have differences in our sensory processing, how we experience the world, how we respond to transitions and shifts in the day. And we all have different needs. So I do think that education, which I know we'll dive into in a moment, is that piece that Diane Gould (27:38) Right. Right. Chantal Hewitt (27:59) may take a lot of time and I'm just trying to be realistic, but also validating because it is so important that it is a huge area that parents struggle and not all children are able who are PDA to access education or there's just so much stress involved for the family. So I do love how you've given that sigh of relief, which I agree, I'm sure people are going, ⁓ thank you. If you just can't do that one more thing. Diane Gould (28:18) Yeah. Chantal Hewitt (28:25) like that's okay to kind of pull back. I know you were speaking about therapy, but yeah, would, I'm really curious ⁓ to hear how or what your findings were on either access to education or just school refusal. Diane Gould (28:28) Good night. Melissa McKenzie (she/her) (28:39) I think it's fair to say that we knew this was going to be the biggest area of this report. And we wanted to do it justice as best we could in the snapshot that we did. For the under 18 group who, you know, the majority of these kiddos, they're actively attempting some educational process. 88 % of them were experiencing some form of school avoidance or refusal at some point in their academic lives. And again, it's like in my bones, I knew that, right? I would have guessed that these numbers were gonna be high, but to see it just consistently across the board that families were like, yep, this is a consistent thing. And it wasn't just that yes, we've experienced this refusal. was. Diane Gould (29:13) Yeah. Melissa McKenzie (she/her) (29:20) We're experiencing this often to very often. This could be multiple times a week to every day where families are really struggling to have their children engage with whatever the educational program is. And that I imagine is also that connection sigh of relief piece because you probably have a lot of families who are struggling with this in silence. They're looking around and they're like, well. Diane Gould (29:43) Hey. Melissa McKenzie (she/her) (29:44) The other kids in the neighborhood are getting on the bus just fine. Why am I struggling every single day to have this habit? And when you can look at it and say, no, we're all in this together. This is a consistent experience. Yeah, I think it says something about education. Diane Gould (29:49) Right. Absolutely. Yeah, until we had that statistic, we were borrowing the UK statistic of 70%, which we thought was really bad. yeah, turns out we are worse, not surprising. And I think also in the report, it did show, and this is also something I knew but didn't know consciously maybe, is that even a child getting a 504 IEP didn't really make things change so much. that was important to know. I do want to just say, just for my own regulation, I hate that term school refusal because it makes it seem like the kids just being difficult, like they could go to school, but they're refusing. Melissa McKenzie (she/her) (30:38) Mm-hmm. Diane Gould (30:46) and like putting the burn in. Right. Right. Melissa McKenzie (she/her) (30:47) We even struggle with how to phrase that in the survey because for us it's not some kind of oppositional refusal. It's like, no, I am shutting down and my safety system is saying this is not okay. But so many people hear it as school refusal. It's almost like you have to use that phrase. I agree. Diane Gould (31:00) Right. Yes, yes, you have to. I know, Chantal Hewitt (31:07) you Diane Gould (31:08) yeah, for the survey, but I just wanted to put that out there. When schools don't work for our kids, it doesn't make sense to send them there. so often, I like to say, you've got the kids who... Melissa McKenzie (she/her) (31:11) Yeah. Diane Gould (31:25) aren't cutting it at school and are getting in trouble. And then you have the kids who are masking at school. And the schools don't recognize that the students even having a problem until they stop coming. They just hit that wall and they can't walk out the door one more time. And we spend a lot of effort trying to get schools trained and on board and understand PDA because it It's such a quality of life issue for everyone involved. Melissa McKenzie (she/her) (31:52) Yeah, I was just looking back because I wanted to make sure my numbers were correct, but kind of going along with that, there were two things that in my mind are worth highlighting here. The amount of families who were trying to access a more non-traditional education, that was actually higher than I expected it to be. We had about 25 % that we could put into a category of a more non-traditional program, whether it be homeschooling, unschooling, online school. Diane Gould (32:09) Mm-hmm. Melissa McKenzie (she/her) (32:18) And then we had about 5 % who were kind of some hybrid combination, you know, where it may have been like we access the public school twice a week, but at home, you know, we do something different. So around 30 % of these families were saying that public school model doesn't fit for us. And that was kind of a relief for me. ⁓ Just personally growing up, the idea of homeschooling was so foreign and, you know, my upbringing that now that I'm homeschooling my two kids, Diane Gould (32:36) I'm ready. Melissa McKenzie (she/her) (32:46) It's almost like I feel this relief of like, okay, I'm not alone in making this decision for my family. But the other thing that I wanted to highlight too, which is frustrating, and that's why I wanted to look at my numbers, 22 % of the families that filled out the 18 and under, or under 18 survey had said that their child had been suspended. And then another 6 % had children who were expelled. Diane Gould (32:50) Yeah. Melissa McKenzie (she/her) (33:13) And I'm looking at those numbers like that is high. That is insanely high that these kiddos are having that kind of an outcome. In theory, because they're just not feeling safe in the school and. What do do about that? Diane Gould (33:21) Right. Right. Right. And that's not even looking at seclusion and restraint, you know, numbers too, which Melissa McKenzie (she/her) (33:31) Yep. You know if if you are one of those families who's had your child be? Ended or expelled from school like again. It's not your child. It just probably means that this is not the right fit for your kid ⁓ And the the fear I think that a lot of families have around Homeschooling their kiddos, you know and it to be fair. I know that there are Diane Gould (33:34) Yeah, yeah. Yeah. Yeah. Melissa McKenzie (she/her) (33:54) a fair portion of families who just don't have access to that. If both parents are working outside of the home and you don't have another caregiver that can provide that, that's its own logistical struggle that I want to acknowledge. I do think that that internal fear though of this isn't the right way to educate my kid, we've been told over and over again that you have to do it a certain way in this specific program. Diane Gould (34:04) and Melissa McKenzie (she/her) (34:18) That can be a big hurdle in my mind for lot of families taking that leap into a more non-traditional environment. the fact that 30 % of the families in the younger survey were doing it, again, you're not alone. The struggle is real. Diane Gould (34:31) Yeah, right. Chantal Hewitt (34:34) I think just hearing that, don't homeschool my children yet. I have the access to being an educator and I know parents will learn as they need to along the way. But I think being very aware that the systems, our education systems do not support PDA and a lot of the time, just neurodivergent individuals in general, I think it's, I find it helpful as a parent. to kind of prepare myself because I know that so much work is being done in this space, but I'm working with families who are so scared that that will be their path. And I know Melissa, you were saying that you do homeschool your children. And I just love that you've given that message that, you know, it's not your child and they can be supported in a different way. Obviously, so many factors, like you mentioned, are involved. But yeah, I would love to see the education system do this huge overhaul. I don't know how realistic that is, but I think that is such like a driving piece, at least for myself, of knowing why the work and the research around PDA experiences for our youth, our young children, our adults, and valuing lived experience. That's why I just think that is so important that we're giving families that validation, those tools. and removing the barriers of isolation Diane Gould (35:53) Well, we launched PDA and education training for schools this year and we have kind of self paced course or we can do it live like a bespoke kind of approach to training teachers. We try to make it easy for families. So. Chantal Hewitt (35:56) Hmm. Diane Gould (36:13) We have a letter they can send their child's school. We can even approach their school directly because we need to have the buy-in from the schools. we're trying. We're trying. And slowly some schools are getting behind it. But training is only so much. You have to actually put it in action. We're starting. We're also, I think, in the fall going to do a little talk to kind of the members of our Microschool Association because I think that might wind up being a big part of the future of education for PDA or these, you know, it's usually a parent of a PDA or who starts a small microschool. But we're always looking for alternatives because things are rough and a lot of kids, even if elementary school can go okay, things can fall apart in middle school. So we wanna be prepared. Melissa McKenzie (she/her) (37:23) Yeah. And I guess just to kind of add to that as we're having this conversation, well, one, one of the things that we've been talking about as far as like the research piece at PD North America, education is like front and center. Like, what are we doing with this next? And trying to get some more data. But I was just thinking, too, I imagine and I'm just guessing here, but Diane Gould (37:25) Mm-hmm. Yeah. Melissa McKenzie (she/her) (37:44) How many parents of kiddos in this education space are looking at this and honestly saying like, I didn't sign up to homeschool my kiddo, you know, like this is not what I thought parenting was going to be. But if I say that out loud, it might be selfish and I'm not putting my kiddo first. And to have some of these more micro school models where the kids will get the opportunity to be independent and the families can have that much needed break that they need for their Diane Gould (37:52) Mm-hmm. Right? Mm-hmm. Melissa McKenzie (she/her) (38:12) nervous system, think both of those things are just huge. Mm-hmm. Yeah. Chantal Hewitt (38:16) like saying those things out loud and actually, yeah, no, that, Melissa McKenzie (she/her) (38:19) Yes, and it's a, I'm not sure where I was, but it's okay for caregivers to need that break and to want that break and to have these school options so that the kids can not only get that level of independence and the practice there, but also for those caregivers to have a minute to themselves where they are able to focus on regulating their own nervous systems for at least a couple of hours a day. I think from a family systems approach, like that's probably gonna be better for everybody. Diane Gould (38:22) Okay. Melissa McKenzie (she/her) (38:46) in many cases. Diane Gould (38:47) And many PDA kids really want the peer connection and relationships. And that's so important to them. So they're looking for that as well. Melissa McKenzie (she/her) (39:00) Yeah. Chantal Hewitt (39:01) Yeah, and I love how you spoke of the family systems, because I know it was within your experience report as well, but that when we just look at the child, yes, super important, but everyone needs to be on board, right? Like it affects everyone, everyone's understanding of the child, the support for the child, those wraparound systems that even though the child may seem okay, perhaps if it's internalized, they're masking a lot and then explode at home. Diane Gould (39:14) Yeah. Chantal Hewitt (39:28) Yeah, the school might think they're doing this great thing, which may look on the surface that they are, but then at home, it's telling a different story. having that, yeah, the validation and the support is huge. Melissa McKenzie (she/her) (39:40) Yeah, so for me thinking about the report we we wanted there to be different levels of access to this report because we know people are going to have different levels of engagement We do have on the PD North America website We have our full 50 page report that has a lot more of the data in it. We put together a shortened report That's instead of 50 pages. It's more 25 to 30 pages with some snapshots in it and then we are working on putting together some Diane Gould (40:01) Thank Melissa McKenzie (she/her) (40:08) We're thinking of them as one-pagers so we can have an education one-pager, a treatment one-pager, things like that so that families can actually have something more condensed that they can bring to educators, treatment providers, that kind of thing. So be on the lookout. That'll be there soon. Diane Gould (40:22) Yes. Chantal Hewitt (40:23) That's awesome. And I will make sure that all of those resources are linked in the show notes below or in the description if you're watching on YouTube. And Diane, I will pass this over to you. Is there anything else you were speaking of trainings for schools? Is there anything else coming up that you really wanted to share with the Attuned Spectrum audience? Diane Gould (40:40) Yeah. I'm hoping people will spend a little time on our website because we're always updating that. We have a 10 page guide explaining PDA. We have Insights, which is our blog. We just did a training for therapists that's also self-paced on our website. We have webinars almost every week and all our webinars are kept in a learning lab that people can listen to and we have downloadable resources. I also do want to make the point that We never turn anyone away from any of our virtual programming. So if you can't afford the little fee like no questions asked and we have a great newsletter and annual conference. So spend some time on the website and a fall conference. Now we've just started as well. So we are very obsessive and just keep doing more and more. We can't help it so. Chantal Hewitt (41:45) Neurodivergent business brain. Diane Gould (41:47) It's yeah, I always say why do we make things more complicated every year, but it doesn't seem like that's going to change. Chantal Hewitt (41:54) No, and it's you're providing barrier free access to those who need it. And I think that that is amazing work. And I also just love how you have it. You're not that. Yes, there is the option to invest in the training. And then if there's something that you really are struggling with, just to to know for families that that barrier can not be there is just really. Just so kind and just really shows, I think. Diane Gould (42:17) Absolutely. Chantal Hewitt (42:21) from what I'm gathering, your value, maybe personally or just professionally as well within PDA in North America. But yeah, just really caring and making sure that people who are looking for support are able to get it. So thank you. Diane Gould (42:25) Thank you. I do want to say we know we're missing people and that is painful for us. There are so many communities where PDA is not talked about, not recognized, and our hope is in the future we will be able to reach more marginalized communities. So we have a lot to do. Chantal Hewitt (42:57) there is, there's so many people coming out who, and I think it does, it comes from that, you I don't want to just, you know, seclude like to the mother, but, obviously you've got different caregivers and parents and, ⁓ but it is, it's somebody who cares for a child is going, this is not right. Diane Gould (43:08) Mm. Mm-hmm. Chantal Hewitt (43:14) Why is this so hard? Why am I not trusting my gut instinct that the theory is not safe for them? It's not safe for their nervous system. And this is why love these conversations because it brings us together and I don't know how you feel, but I've got goosebumps just feeling hopeful. And so I really appreciate, yeah, I really appreciate you both being on the Attuned Spectrum podcast. Thank you, Melissa. Thank you, Diane, so much. Diane Gould (43:17) Right. Yeah. Melissa McKenzie (she/her) (43:34) It feels good. Thank you. Diane Gould (43:43) share. Chantal Hewitt (43:43) Yeah, and I hope Diane Gould (43:44) Thanks for having us. Chantal Hewitt (43:46) you're welcome. Diane Gould (43:47) Thanks.

PDA Autism Parenting: The Data That Proves You’re Not Alone (Guest PDA North America)

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PDA Autism Parenting: The Data That Proves You’re Not Alone (Guest PDA North America)

About this episode

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