Former ABA Therapist Turned Neurodiversity Author

Kim Gallo is the author of the new book, The Pivot: For Parents and Educators – Looking at Autism and ADHD Through a Different Lens. She is a speech language pathologist in south Florida and has experience as a former applied behaviour analysis (ABA) practitioner.

Kristen and Kim discuss Kim's changing views on ABA (thanks in large part to TikTok!), the changing landscape of what it means to be autistic in today's world, stigma experienced by autistic individuals, masking and its impact on identity and sense of self, Kim's perspectives on having a neurodivergent young adult daughter, and more.

Check out Kim's website: Kim Gallo SLP: Sensory Smart & Neurodiversity Friendly

Buy The Pivot: For Parents and Educators — Looking at Autism and ADHD Through a Different Lens by Kim Gallo

If you'd like to know more about topics discussed in this episode, check out:

"Individual Differences, ADHD, Adult Pathological Demand Avoidance, and Delinquency" by Vincent Egan et al.

"After Your Child's Diagnosis of Autism Spectrum Disorder: A Quick Start Guide for Ages 6-12" —Government of British Columbia [showing prominence of ABA in British Columbia, Canada]

"Pathological Demand Avoidance: What and Who Are Being Pathologised and in Whose Interests?" by Allison Moore

Why Johnny Doesn't Flap: NT Is OK! by Clay Morton and Gail Morton

"Pathological Demand Avoidance (PDA)" —National Autistic Society

Episode intro and outro music: "I See You" by Hampus Naeselius

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

To submit a question to possibly be answered in a future episode, please email kristen.hovet@gmail.com

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Transcript

Kristen Hovet  
Today I'm speaking with Kim Gallo from Florida. Kim is a speech language pathologist, former ABA practitioner, and a new author. Kim's thoughts on ABA have changed since she was a behavior analyst, and are quite nuanced, which is something I appreciate very much. I ask that you listen to this episode with an open heart and an open mind. And I say that because I know a lot of people will see former ABA practitioner and they'll quickly turn this off or they won't even give it the time of day. So these types of reactions to ABA are completely understood given its decidedly shady history. At the same time, we have to proceed with understanding and compassion and give each other the benefit of the doubt. Acting angrily or abusively towards those with different experiences or opinions from our own is unacceptable, in my opinion, and just increases the us versus them divide and reduces opportunities for growth. I realize that some might not agree with me on this, but that is my stance. I can think back to times when people acted angrily or abusively towards me when it came to differing opinions. The end result is that I just got more hardened and resolute in my particular perspective on whatever it was about, and I would be way less open to hearing the other person's side of the story. For those with traumatic histories related to ABA, aspects of ABA are discussed in some detail in this episode. And suicidal ideation is also briefly mentioned. So please take care. So with that in mind, let's get into it.

Kristen Hovet  
Kim Gallo is the author of the brand new book titled The pivot for parents and educators looking at autism and ADHD through a different lens. I highly recommend the pivot to both those new to autism and those who need a refresher or update on the most up to date language related to autism and neurodiversity. Please say hello to my guest, Kim Gallo.

Kim Gallo  
My name is Kim Gallo and I am a speech language pathologist. I work in high school in South Florida. I'm also licensed in Oregon state where I work with school aged kids via telepractice. I'm the mother of two children. My son is a freshman in high school. My daughter is a junior at university. I'm also a new author. My first book was just published last month.

Kristen Hovet  
A listener of the podcast put me in touch with you. So that was like an interesting way to meet. And specifically regarding your work in ABA.They were concerned about backlash you'd experienced. Can you outline your background in ABA?

Kim Gallo  
It starts a long time ago, I was in my early 20s and I moved from New York to Florida in the late 90s with my family. That's where my university or my college education started. I was at the community college and I saw an advertisement on the bulletin board which was written by a mother who had a two year old son identified as autistic. The family was looking for college students that they could hire to train on how to help their son. The training was called DTT, or discrete trial training, which basically is ABA. So this family was basically beginning to establish a 40 hour a week home program for their son who was two at the time. They were a lovely family who I'm still in touch with today, 26 years later. They hired around eight or nine girls and we each took a shift and worked with the child for about two hours at a time. I had never done anything like that before. I wasn't formally educated beyond high school, nor had I heard of autism at that time. So I didn't really have anything to compare the program to. I did find it fascinating. I chose to write a lot of my initial psychology papers about autism because I was interested in this family and this child. I remember at the time the incidence of autism was one in 15,000 children, so that's obviously changed quite a bit since then. We were utilizing the techniques of behaviorism in order to teach the student skills such as imitation, pretend play, matching, receptive and expressive language goals. I enjoyed working with him. My shift was usually from 10 to 12. He already had a session before I arrived. He would work for things like popcorn or short clips of watching Barney or a similar program. I would take data on these wonderfully organized color coded goal sheets that his mom prepared. Every session was videotaped and would often be being watched live by the parent from another room. This family always tried to ensure that the program was well rounded and did not just include tabletop time. Some of the girls that worked with him would swim with him, jump on the trampoline with him throughout the day, take him places, they tried to make it as well rounded as they could. There were a few things that bothered me about the program looking back, even though I felt it was well done. Overall, there were a lot of things that made sense that we were teaching a two year old. Many two year olds are talking about colors and shapes and puzzles and doing pretend play with dolls and animals. We read books, played with Play-Doh, but there were other drills that I kind of questioned the purpose of. Like we taught him his phone number, which I knew at the time that his, I guess, you know, reiterating it back to us when we asked the question was a memorized answer that he didn't understand what it meant. And that always bothered me that there were things that we taught that he learned, but I knew that he didn't know what it meant. And when I would question it, which I always did, like, why are we teaching this? I was told, Well, you know, if he ever got lost, and you know, somebody said, Hey, little boy, like, What's your mom's phone number or something similar to that he would have an answer. But even then, I still kind of felt like, I mean, that's a nice idea. I just didn't really know that it would pan out the way they had hoped. So through that family, I met many other families that were also looking for a therapist to work with their children. And at that time, I had only you know, read verbal behavior by BF Skinner. I was familiar with Lovaas, there was a group that we used to consult with down in Fort Lauderdale called reaching potentials. And we used to use them to update the goals of the program. So somebody would come to us or we would go to them and say, This is where we are in the program. Can you tell us what we should be working on next? And that is how it went for a while. If things got difficult, they actually had, you know, a consultant fly in from New York and help us if we were having difficulties.

Kristen Hovet  
What backlash did you experience?

Kim Gallo  
As far as backlash goes, I haven't received any backlash until recently. After I wrote the book, I was obviously trying to promote it by communicating with people on social media. Most everyone I spoke to was pleased and eager to talk to me. But I remember one woman in particular who was initially enthusiastic to talk to me, she had seen my book cover, I had sent her my book, I have the infinity symbol on the cover of the book. And I guess she read something that said I was a former ABA therapist, and she contacted me and kind of asked me to explain myself, and it was evident that she was unhappy to learn that information about me. So I wasn't really sure what to make of that. While I tried to appease her by telling her that I was no longer involved with anything ABA related, she was still obviously displeased, and she essentially ghosted me. And that was the first time I had ever experienced anything like that. But since then, I've become very aware of the divide between people who are adamant that ABA is the worst thing that ever happened to them and other people who are currently still enrolling their children in ABA programs. So it's an interesting controversy, especially for me because, as I said, I always worked in people's homes. I never would do anything that I felt like was unethical or hurt, at least knowingly. Looking back, you know, all the sensory things were kind of swept under the rug. The why of what we were doing wasn't always evident. But I was a young adult, and I was following directions so to speak. I, as I said, I did ask questions, but I never did anything that like, if it were my own child, I would have done the same thing. I mean, these parents, especially the level three parents, they want to see their child be educated, they want to see success. And then, you know, with some of the traditional therapies like speech and OT and things like that, it's not as clear to see the progress as it is in ABA because they don't necessarily start with things like imitation and some of those type of things. Does that makes sense?

Kristen Hovet  
Yeah. I mean, for me, as late diagnosed, I learned about ABA relatively recently. So I feel like I'm still... I do have thoughts about it now after researching it for school and talking with more people about it. So I'm definitely critical. But I'm also sensitive to the fact that people like yourself go into it not being aware of the different like controversies. And probably back then it probably wasn't even a controversy at that time.

Kim Gallo  
No, not at all. As a matter of fact, it was kind of like the gold standard, it was the only thing that, you know, like in the interview you did with Ciara Harte. You know, I remember hearing her talk about that it was the gold standard way back in the 60s, 70s, 80s. And there was no social media back then, you know, now we're learning from each other. Now, autistic adults are saying, hey, like, that wasn't cool. Like we shouldn't have done that. It was detrimental. It was harmful, it affected the way I have relationships today, you know, 20, 30, 40 years later. And that's one of the reasons I actually wrote the book because I started to watch a lot of adults who talk about their experiences from high school, and I work in a high school and I hear them say, you know, I was diagnosed as high functioning and, because of that, I didn't get a lot of the services that I needed. I had severe, severe sensory needs that no one ever looked at, because I was high functioning. I was an eloquent speaker. And because of that, I didn't get accommodations, it took me hours to do my homework, which should have took 10-15 minutes, but because I perseverated on things, it took hours. And honestly, so grateful that I have access to social media and these people who are sharing their stories, because it's really allowed me to, the very next day, go back to my class, go back to my students and say, I am so sorry, I never thought about it like that. And now that I know this, I'm going to do it better. I'm going to do it right. I'm genuinely touched and lose sleep over things I've said, things I've done, never maliciously, but, you know, still, if it was harmful to someone that's very bothersome to me. People don't go into the field of therapy to hurt people, they want to help.

Kristen Hovet  
Totally, totally. And I have to say, reading your book, it's written so sensitively, and so progressively like you're using language that the autism community most wants people to use. So I'm so grateful for, you know, just the amount I've read, which I got about halfway through. And I have to say like, I feel like everyone should read it, and including people who want to, you know, take issue with the fact that you were working in ABA, They should read it first, before they say anything.

Kim Gallo  
Thank you. And I still mess up, I still catch myself saying person with autism versus autistic person or diagnosed with autism versus identified. I still, you know, for how many years was I saying it in a way that was detrimental. So it's hard to break those habits, you know, even knowingly, it's still really difficult.

Kristen Hovet  
I do as well and I'm, you know, in the community and I still because it's only four years old for me in terms of like being diagnosed and learning. Yeah, so I still do the same thing. You did mention that you listened to the episode with Ciara Harte. So did you have any other thoughts when you were listening to that? I'd love to hear them. For those of you who haven't listened yet, we're referring to the February 13, 2023 episode of The Other Autism podcast, titled exposing violence in ABA, an interview with Ciara Harte. If you haven't already listened, be sure to check it out.

Kim Gallo  
I was thinking about, you know, she talked a lot about the bad stuff. She talked a lot about the use of aversives and violence and the way that things are documented and framed. It's all very interesting. I just, you know, this was 1998, 1999. We didn't ever do anything like aversives. It didn't feel like what she described, I understood what she said. And I could see all of this happening. But I never personally saw anything like that. So I don't want to take anything away from anyone who experienced abuse or mistreatment at the hands of unethical ABA providers, I can certainly see why those people who experienced that would be anti ABA. You know, ABA and the discrete trial format does take away your autonomy as a person, when you really think about it. I mean, you know, I remember kind of positioning the little kiddie table so that the student couldn't get up. I didn't think that was horrible at the time. But now, looking back, and as a speech therapist, I follow a child's lead, I don't demand that a child sit in a chair, I don't. I do what will get my goal accomplished. So if a child is flinging a toy off the table, I might fling the toy off the table, too. Because when I do that, I realize the child is now looking in my direction, paying attention to me, ready to hear what I'm going to say next, where if I reprimanded them, or punished them in some way, it would be really hard to get them back. And then again, there's the why question. Why is the child doing what they're doing? Oh, they're hand flapping? Well, that's not socially acceptable. So we have to shape it into a clap so they'll look more normal. Why are we working on this particular goal? Why is this important to teach? And then, you know, you also have to remember that autistic people are all different from each other. So we have to think about that fact that someone might be, you know, super verbal, and have a low IQ, and then their capabilities are going to be very different. Where if someone may be nonspeaking, but they could be an absolute genius. So if we don't listen to autistic voices, then we're still often missing the mark with what's in the best interest of the person.

Kristen Hovet  
When we first got in touch, you mentioned your interest in discussing the changing landscape of what it means to be autistic in today's world. So could you say more about that?

Kim Gallo  
I definitely feel like the landscape is changing. I feel like it's super slow. But I think it is happening. I'm super glad that there's social media, like I said, because I think that's the huge way that a lot of people are finding out about these things. It's April, World Autism Day was April 2, I actually posted a duet on Tik Tok, that I thought would be a good way to spread awareness about some of the things that I've learned. And, you know, some people are not aware of the puzzle piece controversy, they're not aware of the language that's changed. And some people are not ready to go to that place. So it's going to take a while, a long while, probably. But I think we have to start somewhere. I do feel like in other countries, they're a little bit more progressive, to be honest. I feel like in the UK, they're a little bit more forward thinking about some of this stuff, at least in my experience and my research. Australia seems to be worlds ahead of us in terms of the way that they talk about it and think about it. But, like I said, we have to start somewhere. So I'm hoping that my book is one way that I can make that happen.

Kristen Hovet  
One thing I noticed, I was going to mention Australia, too. There's a divide with the ABA question. Of course, it's a big one still here in Canada. And a lot of people say, Well, you know, intervention, there's that word again, intervention, treatment for autistic folks isn't complete without ABA. So there's that thing that's repeated so often that I think people just say it here without really considering if it actually is necessary. And then you look at Australia, and they'll have whole organizations geared towards children and ABA won't even be one of the options. They'll have OT, they'll have speech language, regular psychological therapy, and no ABA in sight. And somehow they manage quite well without it. It's such an interesting divide. I don't know.

Kim Gallo  
It is. And here in the United States, we also have to think about the cost of therapy. If you are a parent of a very high needs child and you are an intuitive person by nature and you're doing your best, you know, maybe it's not your first child, and you're trying to teach your child and figure out, you know, how to reach them. And again, we have the whole insurance issue, if the insurance doesn't cover but 10 speech sessions a year, but they'll cover ABA and you have no reason to think ABA is horrible. And you are witnessing it and participating in it. And it seems to be lovely, you know, you bring your child, it seems to be as much as close to a typical preschool as it can be, considering what they're trying to do. So there's still nursery rhymes, there's still circle time, there's still table time. And so I'm sure, as a mom, it must be really odd for someone to say, Oh, I can't believe you put your child in ABA, how could you do that? And in your experience, it's perfectly fine. Like you would probably not even understand why someone would say that.

Kristen Hovet  
Right. I looked at what people get here in British Columbia, when their child's first diagnosed. They might get a pamphlet is usually the first thing they get. And it's, you know, from the government of BC. And the first thing, in terms of interventions, they still use that language for sure, it's ABA is number one. Also, like the US, it's the most funded, and it's called evidence based, the evidence based intervention. So, I mean, how could you fault the parent if that's the information they're given? It's backed by experts. Of course, I mean, they're not going to question it. 

Kristen Hovet  
So my next question is a really long winded lead up. In your book, the pivot for parents and educators looking at autism and ADHD through a different lens, you talk about stigma experienced by autistic children. I think we can agree that this stigma extends to all autistic individuals regardless of age. But, of course, your focus was autistic children. You introduced this concept of stigma in the context of autistic children often not having a concept of personal space. This not having a strong sense of personal space can quickly lead to rejection and judgment from others, especially if an uninformed individual does not know the other person's autistic. And the autistic child, in this case, invades the personal space of another and is then quickly rejected by the irritated individual whose space was invaded. You write, quote, the reaction feeds the child's thoughts of rejection and perpetuates the there is something wrong with me mindset in the child, end quote. So I have to say that as the late identified autistic person, I don't actually recall ever having an issue with personal space myself, I may have had this issue early on, and then quickly adjusted and increased physical space between myself and others. But I don't recall this being a problem. So I do recall people disapproving of me or rejecting me, or being frustrated with me, because of my sensory sensitivities, my emotional sensitivity and my cognitive differences. So for example, I've always been quite pedantic. Often, at least in neurotypicals' eyes, annoyingly focused on details, and given to quote unquote, over analyzing everything. This is even the case now. I can sense people's frustration almost right away in interactions with them. And I experience this as rejection. Even though I can tell myself they don't mean it, or it's not rejection, that's what it feels like. It's not a good feeling. And it happens very often, especially more these days now that I'm consciously focused on being true to myself and unmasking. The ways that neurotypicals express their frustration with me include teasing, sighing, rolling their eyes, making faces that I can see, I can see even subtle changes, or even saying something in a joking tone, like, here she goes again. So even when they're aware of my being autistic, these things are common and very hurtful. I mean, I don't respond to neurotypical behaviors with the same reactions. Like if they don't go into detail, I don't go, uuuggghhh, you know. So I don't know what makes it okay for them to do that. And I know I'm not alone, other autistic folks that I interact with describe the same kinds of experiences all too often. I don't know if people think we aren't easily hurt, or that we don't notice. But all too often we do notice and we do hurt. I'd say, because of past experiences, we might even be more aware of these microaggressions. In your book, you talk about ways to break the stigma or work on breaking it over time through raising awareness and education on autism and neurodiversity. How would you recommend dealing with these types of experiences individually on a day to day basis?

Kim Gallo  
That's a really good question. And I want to apologize because I am that neurotypical person who had the perception of we are the majority, and you're doing it wrong, and get it together and figure it out. Which is horrible. And again, I apologize for that. Once I became aware of your perspective, which took a long time for me to really think about it in the way that you just explained it, but when I did, I was kind of like, yes, that's exactly right. Why is my way superior? Why is my way the right way. There's a great children's book called, I want to say it's called something like Why Johnny doesn't flap. And it's a book written from a child with autism's perspective. So he's basically telling his story about his friend who is neurotypical, and he's saying, Johnny doesn't jump up and down when he's excited. And that's kind of odd. But I guess just that's the way he does it. And Johnny doesn't have like special interests that he knows a lot about, like, he knows a little bit about a lot of things. But there isn't like one or two things that he really knows a lot. So there's like, I don't know, maybe five or six different autistic like characteristics that he's calling the neurotypical kid out on for not having. And it's kind of like the first time I've ever heard it put out there like that. And like I said, I work in a high school. And as soon as I saw that book, I immediately got it. And I read it to my high schoolers because I needed them to hear that, I needed them to hear that, you know, this is all a matter of the way that we perceive the world. You know, if you're going to perceive the world in such a way that you feel less than or like the minority, then, you know, it's going to be harder for you. So let's just think about it like, I'm okay, you're okay, we're all okay. And if anybody finds me to be not okay, then like, they're not my people. Right? So like, in your example, when you come across someone who's kind of intolerant of your way, I would absolutely point out and say, you know, why is it not okay that I am saying what I'm saying, doing what I'm doing, feeling what I'm feeling? What's the difference between when you're saying something, and why is one okay, and not the other? And I think, obviously, you know, people are going to respond to that defensively, initially, because they then feel called out upon, as I did. But when you sleep on it a little bit, if you're a kind, caring, loving, good natured person, it's gonna bother you. And it bothered me. And I definitely feel like, with neurodivergence overall, there needs to be more education to the neurotypical population. Because if we're going to have a change, that's a huge part of it is saying, hey, they're different, so what? You know, it's your tolerance that needs to be worked on, not them stuffing down a part of who they are to accommodate the fact that you don't perceive it to be typical, or, you know, what you're used to.

Kristen Hovet  
Totally, I love that, yeah, I even catch myself doing what they do, like kind of doing it for them in those scenarios, like, I'll be self deprecating, or I'll be like, you know, I'm just going to be annoying here and talk about XYZ. And then I've had to really think, like, why am I doing that? I'm making it okay. I'm normalizing their reactions and responses to me. So I have to stop that first of all.

Kim Gallo  
It's hard, though. 

Kristen Hovet  
It is.

Kim Gallo  
Because we all want to feel okay, we all want to feel accepted. So it makes sense that you're doing that. But, you know, you're aware now and you know that it doesn't have to be that way. And I do feel like when you surround yourself with the right people, then that need to do that just goes away because they accept exactly who you are, whether it's you're a close talker, or you know, whatever it is, they they just accept that that's okay.

Kristen Hovet  
I think many of us who are late diagnosed are or were heavy maskers. And that's how we slipped through the so called diagnostic cracks for so long. And, for me, I'd say I was such a heavy masker that it's challenging to unmask or know like where to unmaks. 

Kim Gallo  
Who are you.

Kristen Hovet  
Yeah. And these traits have become so deeply ingrained, that it's nearly impossible to undo some of them. Like I find myself doing it in any social context, whether neurotypical, neurodivergent, so I'd love to hear how you first of all define masking.

Kim Gallo  
I guess I would say that when you feel like you want to say something or you want to do something, or you are just trying to exist, and you feel like, in some way you need to change the way that you do that thing, in order to accommodate someone else, or in order to fit, or for your own safety, there's a lot of different reasons why it happens. I'm thinking of a student of mine who is rocking a lot, he does a lot of things with his fingers that people don't perceive to be typical. He makes a lot of, you know, just lots of self stimulatory stuff, humming. And it's been really interesting over the last six months or so because, for really the first time, I just let it go, I just let it be. Because I now understand the concept of masking. And I don't want to do that to him. I'm sure that there's lots of people who say, Hey, knock it off, stop doing that, you know, sit still. And you know, they just try to make him not do those things, because he's distracting them or the sound is bothersome to them. But I understand that he's regulating his nervous system. And if he's going to learn, then he has to have a regulated nervous system. And if he doesn't, then the lesson I'm teaching is going to be wasteful, I'm wasting my time, if he's not able to do what he's doing. So I let him be him. And he doesn't have to mask in my classroom. I can't say that that happens all day long. But I am trying to teach him about advocating and asking for his accommodations so that he can have the most pleasant day possible. I don't want him to be on social media, three years from now, talking about how horrible his high school experience was because he had to mask. That would be extremely bothersome to me now, knowing what I know.

Kristen Hovet  
Mmm hmm. And what are some of the, I guess, long term consequences of masking?

Kim Gallo  
I saw someone explain in a video one time that she didn't know who she was, you know, there was this, I think she appeared to be like in her 30s, and she was saying, I feel like I have to always apologize for who I am, like every part of me. And that just shouldn't be. Like now I don't even know who I am. Now it's like I feel like when I'm trying to be me, I'm almost faking being me because the mask has become who I am. And it's exhausting. And it affects every ounce of my being. It's, you know, I'm way more tired than I should be. It's horrible when you think about not being able to be who you were meant to, who you really are. And then like losing yourself in that. I cry just thinking about it. It's really bothersome to me.

Kristen Hovet  
You wrote in your book that everyone masks, but it's almost like it's a difference of intensity. And I guess how often a person masks, like we all do as humans because we're all sort of mimicking each other. And we're all hiding sort of unacceptable parts of ourselves, right? But, for an autistic person, it's almost like everything is masked.

Kim Gallo  
That could certainly be the case. When I am talking to them about like social skills type of things, and we talk about social fake, which is a term Michelle Weiner coined. She is a speech pathologist who has a company called Social thinking and she really has excellent materials and does speeches and she's just great. And I've learned a lot from her as well. And she calls this social faking, which is, you know, how you kind of have to sometimes you have to think it and not say it, even if you are really feeling something, for the sake of saving the moment, so to speak. I tell the class actually I just told this story recently. I got a sweater as a Christmas present when I was a kid and I absolutely hated it. It was red and I don't really like red and it had a cat on it and I'm more of a dog person and the material was kind of scratchy. And I was like kind of insulted that my mom would buy me such a thing because there was nothing nice about it and I let her know that I didn't like this sweater in a very not nice way. She proceeded to cry and I potentially kind of like ruined the room Christmas day because I didn't mask and I didn't social fake. And, you know, we talk about that example as now, looking back, I got 10 other presidents that were wonderful. But I was so insulted with this cat sweater that I made a big stinky poo, and I ruined the moment. So we talk about the masking in that respect. Again, it's kind of a little bit of a fine line between masking and social faking. But, you know, if I get in an argument with my children, and then the guy at the coffee shop asks, how's my morning going? I'm really not going to say, Well, funny, you should ask because my kids are driving me crazy.

Kristen Hovet  
Right. Yeah. And also, I think, for neurotypicals, that type of social faking, or masking, doesn't have an impact on identity. Whereas for an autistic person, it actually fundamentally messes up one's sense of identity.

Kim Gallo  
I agree 100%. That's, that's a really, really, really good point. So they are very different in that respect.

Kristen Hovet  
And one of the consequences I know and, as you mentioned in your book, is suicidal thinking or what we call in psychology, suicidal ideation. So I was particularly struck by what you wrote, quote, in terms of suicidal thinking, masking on a continuous basis creates the self imposed impression that the child is not good enough, or is too different from everyone else. An autistic child who grows up believing that difference is a bad thing, will focus on their differences in a negative manner. The commonly noted type of suicidal thinking can be described as a spoken sentence, if I am dead, then I will not have any consciousness, which means that I will not have to hide my true self, which means that my stress, anxiety, depression, and pain will not exist anymore, end quote. That hit me like, totally, yeah. 

Kim Gallo  
Heartbreaking.

Kristen Hovet  
In other ways I've come to see masking as something I can consciously do now to get through a ,now that I'm aware of it, or avoid discomfort in social settings. So having control of aspects of masking in this way has, I think for me, reduced some of the negative consequences. But I still feel the negative impacts, and I even feel the need to mask around neurotypicals who work in the autism space and who are supposed to be quote unquote, safe. And I think it's just because there's that constant threat of maybe they won't accept me, that at any moment, they could switch. I think there's that fear, even if I tell myself, it's, it's okay. So do you have any recommendations related to masking or unmasking that you can share?

Kim Gallo  
I had a student in my office just Friday, who he has a tendency to, like just laugh at random. And I found myself feeling a little, honestly, I was feeling a little irritated by it, because it's random. And I don't, I don't know, I'm trying to talk about something. And he's just smiling and giggling in the middle of my talking. And so I said to him, you know, I love the fact that you're laughing. I really do. Because laughing is so good for your health. It's so good for your body, so good for your mind. But I want you to think about the fact that I don't know why you're laughing. And just like I taught you to say, I'm about to change the subject, I need you to also say, Oh, I'm laughing because I just thought of something funny my friend said to me. And now for me, I mean, I know him and I know that this is a habit of his, but when you're among people that you don't know, or you're, you know, so we talked about situations like what if you were at a funeral, and this urge to laugh came on, like, what would you do then? And he's like, Oh, no, I wouldn't laugh then. And I was like, Well, how do you control it in that environment, but yet you're not controlling it in this environment. You could see like the wheels turning in his head because he was really thinking about his ability to control it. Because I don't think we've ever had like a real conversation about masking and about being true to yourself. He did initially want to be overly apologetic about it. And I wanted him to understand that I didn't want that. I didn't want him to be apologetic for doing what he did or feeling the way he felt. I just wanted him to know that he needed to at least communicate to me what was going on. Because I want him to understand that it's okay to be different, but it's also beneficial to explain yourself. Do you have to explain yourself? Well, no, you don't have to, but if you're trying to have relationships and one person is always feeling lost and confused about what's going on, that's not a nice feeling for the other person. So I think, you know, as far as masking goes, being forthright and explaining what's going on is very different than apologizing. I don't want you to feel like you have to apologize. I want you to understand that I don't want to feel uncomfortable just like you don't. And when you sometimes say or do things that are kind of unexpected, I'm left feeling confused. And that doesn't feel good to me.

Kristen Hovet  
So I guess I'll switch the topic now. 

Kim Gallo  
Thank you for letting me know. 

Kristen Hovet  
I do that all the time. And people are like, wait, what, what's going on? So your young adult daughter was diagnosed with ADHD and PDA. 

Kristen Hovet  
PDA is short for pathological demand avoidance. The term was coined in 1983 by Professor Elizabeth Newson, and refers to the anxiety driven need to control one's environment and the demands or expectations of others. Some scholars, according to an article by Allison Moore, claim that the correct term should be rational demand avoidance and thought of as an understandable and rational response to the circumstances or scenarios one finds themselves in. The problem with pathological demand avoidance, they state, is that certain behaviors and even competencies of neurodivergent individuals can become pathologized as defiance, and maybe we should see it as something other than that. While PDA is often linked with autism, some research has shown that ADHD, emotional lability, and other characteristics are much better predictors of PDA than autism. I think the research is kind of mixed on this. Whatever the case, underlying PDA is the need for predictability, sameness, or routine. And PDA characteristics can be strongest during times of transition, change, or in chaotic environments. Features of PDA include avoiding the day to day demands of life, giving excuses for not getting things done, sudden mood changes, and even dominating or aggressive behavior. 

Kristen Hovet  
And you say she has been one of your greatest teachers. So I think our listeners have a good understanding of ADHD. But can you explain first of all PDA and also how these present together?

Kim Gallo  
First, let me say that PDA is a recognized condition in the United Kingdom. It's not officially recognized in the United States. There isn't enough research to support its inclusion in the diagnostic criteria at this time. There's some debate within the medical community as to whether PDA should be considered a separate condition or just a subtype of autism. Sometimes, when I read about PDA, it sounds like it's exclusive to autism. But when my daughter was diagnosed with ADHD, she, like many others, was also diagnosed with ODD [oppositional defiant disorder]. And, at first that diagnosis made sense. But I've read that it later turns into kind of like conduct disorder, which is a far more serious diagnosis. And she's changed over the years. So, again, at first that diagnosis made sense. But I didn't really feel like it fit all of who she was. So I started to explore some other things like bipolar disorder, and I didn't think it was that, borderline personality, and that didn't perfectly fit either. There was definitely something mood disorder ish about her, but I wasn't sure what it was. And when I finally heard about PDA just a few years ago, and I began looking into that, that was like the first time that something actually ticked almost all the boxes in terms of what I was seeing. She definitely has this tendency to want to avoid everyday demands. So I remember talking to my mom, talking to some other people saying, you know, I could never ask her to do really anything and her just say, okay, Mom, and do it. Like, that's never happened, unless it's something she wants as well. That's a very challenging thing to deal with. It really is.

Kristen Hovet  
That's interesting. I've recently learned about PDA and I almost feel like I wish I had some elements of that because I feel, in my experience, I was like-- 

Kim Gallo  
A people people pleaser?

Kristen Hovet  
A people pleaser, yeah, like overly changing myself and like trying to think about what does this person want from me before they even want it.

Kim Gallo  
Interesting. Yeah, it's almost like the total opposite of that. 

Kristen Hovet  
Yeah, yeah.

Kim Gallo  
But it's anxiety based, also.

Kristen Hovet  
Totally. What are some unique attributes that your daughter exhibits that you really love?

Kim Gallo  
Well, I'm definitely very proud of her. She's very driven when she wants to be. She swam on a nationally ranked synchronized swimming team for over a decade. She's a very thoughtful teammate and friend. She's very resilient. And that's a word that I used to describe her from when she was young. And I still think that that's one of her best qualities is her resilience. She sees the bright side when other people don't. Her friends think she's hilarious. She's quirky, she's confident. She's currently studying political science. I'm not exactly sure what she's going to end up doing with that. But I'm hoping, one day, she has a career working as some sort of advocate because she's already really good at it and quite passionate about helping others that she views as marginalized. So I'm very proud of her for that.

Kristen Hovet  
How has your daughter's influence changed and inspired your understanding of neurodiversity?

Kim Gallo  
Well, like I said in the book, in the intro of the pivot, just knowing that she's neurodivergent helps me kind of think outside the box, in terms of what she says and does and how she behaves and how I react to her. I've come across a lot of students over the years where a parent might say, well, we don't want them to know about their diagnosis. Sometimes they don't even want to know about the diagnosis as a parent. If I don't see it, it doesn't exist. But really, it would have been a million times harder to be her mother if I didn't know, research, accept what's in front of me. It would have been way harder. I wouldn't have been able to be as patient, be as kind, because it can be very difficult sometimes. It's very challenging. So I am really able to be much more patient with her than probably the average person would be because she appears to be quite selfish at times. And that can be really hard. Because as a mom, you know, we're doing everything we can to give you the best of the best that we are able. And when we say like, you know, can you hand me that fork? And you get, oh, not right now, you know, I hurt my foot. I can't walk all the way over there. That's hard. That's hard to hear. It is.

Kristen Hovet  
What's the number one thing you most want people to know about neurodivergent folks and or neurodiversity?

Kim Gallo  
I think treating others the way you would want to be treated is something we all really need to consider on a much deeper level. I think Temple Grandin said it best about we are different, but we are not less than. If everybody can kind of put theirself in someone else's shoes and imagine what it would be like if you said that, if someone said what you're saying to you, like, that would be difficult, hard, damaging. So just think about that. Put yourself in somebody else's shoes. I don't know why that's so hard for people, but it is. This is a long road to getting acceptance, but we have to start walking on that road.

Kristen Hovet  
I'd love to hear your definition of the double empathy problem.

Kim Gallo  
I mean, I feel like that's kind of like what we have been discussing, just the fact that why are we having to be so accepting of all the things that are neurotypical and then when you have someone who's neurodiverse, we're not as ready and willing to just be inconvenienced by whatever it is that's going on that may be bothersome to us. It's really a double standard.

Kristen Hovet  
I think it relates to that common, I think, misconception that autistic people lack empathy, or somehow don't have it, or don't have access to it. I think it's just different or it's expressed differently. 

Kim Gallo  
Absolutely. 

Kristen Hovet  
I feel like I'm super empathic, but my response might, especially if it's really severe, like if the person's, you know, emotional state is very severe, or what they experience is very hard to hear, I might go completely silent and blank, but I'm feeling it. I feel like either I don't want to inconvenience the person with my own emotion in the moment, or I need to process it and figure out what to say. And, in the moment, I just don't know what to say.

Kim Gallo  
But to neurotypical people, they're looking at that saying, well, she doesn't care. 

Kristen Hovet  
Yeah.

Kim Gallo  
When that's obviously not the case. But we have to understand that everybody processes things differently. And just because you go silent doesn't mean that you're not very affected. You might even be more affected than someone else, but you're not presenting it in a way that people are familiar with. So you're going to be judged, unfortunately. And that's where the whole masking thing comes in. And yeah, it's difficult, it really is. I know that not everybody is as verbal and as communicative as everybody else. But I try as hard as I can to try to get my students to understand, explain it. Just say, if you can, I don't want you to think that I am not being empathetic in this moment. It's just that it takes a long time for me to process it. Or I'm kind of at a loss for words right now. I don't want you to think that I don't care. I just, I don't know what to say and I apologize. That's hard, but it's helpful. If you can muster that up, it's helpful.

Kristen Hovet  
I'd like to thank Kim for spending time speaking with me, and be sure to check out her book The pivot. I've included links to both Kim's website and to her Amazon listing for the pivot in the show notes. That's all I have for you today. Thank you so much for being here. 

Kristen Hovet  
Until next time, bye.