Hi so I keep contradicting myself, but I thought that it might be the most useful for me to talk about this stuff today. It might be the most useful for me to talk about my experience watching today’s training and really kind of talk about neurodiversity affirming approaches today. As this stuff is fresh in my mind, fresh in my emotions and I am going to go through my notebook. And I am going to talk about the aspects of today’s training for PLAY Project which is an early intervention approach that’s targeted for Autistic kids. And I’m going to go through and talk about the things that I liked about it and the things that I found problematic and kind of elaborate a little bit more. So if anybody has any questions about this feel free to chime in. I will be posting the recording and hopefully typed out transcript of it as well, but I just feel like everybody is responding a lot today to my stories and the short video that I made so far so I wanted to just talk about it while it’s fresh because I don’t really have the capacity to answer everyone’s questions today. But I think that a lot of the information is important. And I worry that if I push it off that I won’t really I won’t come back to it and I won’t get that information out to you or to anyone.
[01:35] So play project like I said, is a play-based intervention, it’s an approach. It’s targeted for Autistic kids. And the biggest issue for me was in the presentation before we even started talking about the approach or anything, we talked really only about ABA. The speaker mentioned their long history in ABA philosophies and practice and things. And so that really started like where I was like, “oh no.” OK so let me just get into what I wrote down and what I’m noticing as an Autistic speech language pathologist, an Autistic human, in a training meant to train professionals to then better train parents to interact with their Autistic kids. That’s what it ultimately is about, is a parent training method/approach, parent training approach for parents of Autistic kids. And so he the speaker started out by talking about how he was very pro ABA and that he himself doesn’t have any family members with Autism, he doesn’t have any Autistic family members, he himself is neurotypical. So that was like, he told us his background and then everything, everything was person first language: child with Autism, child on the spectrum, things like that. Which, when they’re said in isolation aren’t inherently mean like it’s not like that’s a mean thing. It’s not like a mean word right or like a mean sentence but it’s the reasoning behind it and the implications around it. And it’s also just not what Autistic people prefer. So at the very start when I’m in a presentation or anything, it’s clear to me that it’s not informed by Autistic people when it’s only person first language. And I mean most providers, like that’s what they were taught, that’s what I was taught in grad school so like I’m not faulting individual humans for using that but it is a systemic – systemic might be an extreme word – but it’s like it is the way that it’s taught and so that is the way that it’s used. And when I see that I know that they either have not been informed by Autistic people or they have, and they haven’t grasped it, they haven’t adapted it. It’s not neurodiversity affirming. And so when I speak about Autism I use the word Autism. I don’t…I try not to use the term “Autism Spectrum Disorder” I just say Autism. And I try to use Autistic in any linguistic capacity that I can because that’s what we prefer in this community. That is part of our like community identity as part of our community culture, our community preference. Like all those things are really important. So one of my first notes is that everything here is about the perspective of those parents. It’s not necessarily mentioning the Autistic kids’ perspective or the kids that the therapy approach we’re working with. It’s really just talking about the parents, like how do the parents feel, what are the parents think…like it’s all parent focused, which then inherently because of the way our population is made up is most of it in the case of this approach and the things that they were referencing in the examples that they were using, the parents centered perspective that they’re working in is mostly neurotypical parents. Like it’s not necessarily Autistic parents so it’s like there’s not an Autistic perspective in this as it as it stands, or as it’s been expressed to me so far. There’s a lot of language that was used today and that is like the child would get better. “Children can get better, get better” was over and over and over and over again “get better, get better, get better.” You don’t get better from Autism! It doesn’t go away it’s not something that needs to be cured, you don’t need to get better. No, no, no, no, no. Definitely not. We don’t need to get better from Autism.
[6:00] What are they talking about? Well, what they were talking about was suppressing mostly for the general gist was suppressing Autistic traits and presenting that child to look indistinguishable from their neurotypical peers, which you might know is the goal of ABA. That is what it was set out to do, make Autistic people indistinguishable from their peers. And so those are the vibes that I’m getting from this training so far. And there’s a lot of discussion about it being an evidence-based parent training model that’s great, cool cool cool, but it’s really only talked about evidence and implication from the perspective of the parent. What about the kids? High functioning and low functioning labels – rampant. Everywhere in there is very deficit based, it’s very medical model based and a lot of this comes from the presenter who I believe is also the creator, who is a developmental pediatrician. So there were just high functioning, low functioning everywhere. And shortly after he started he asked kind of like “Oh well since I don’t have any family members who are Autistic, I don’t have any of that experience.” Like he when he mentioned that he kind of like you know, “there might be some people here listening here participating today who do” and people kind of commented in the chat as they were comfortable. Like he didn’t necessarily demand it by any means, but people commented what they were willing to share like, “oh I have a son who is this age and blah blah blah”, “my child blah blah. blah”. Cool, I also took that chance to be like, “yeah Autistic SLP here.” And so then like 20 minutes later he went back to those comments in the chat, like there was a break in presenting. And he went back, and he was like OK so he’s reading all these kids where the parents are saying like, “oh I have a child at this age blah blah blah” and he skipped my comment! I was like, OK cool…that wasn’t noticeable.
It looped back so at this point like it’s very behavioral based, there’s no Autistic perspectives, it’s not neurodiversity affirming, person first language everywhere, deficit language everywhere, like high functioning low functioning all these things not great. That it is not neurodiversity affirming. And so it’s just started we’re like 20 minutes in and there’s just phrases that are like “oh the suffering is so great” and like… He did make a point, so he made a very, a point at the beginning that ABA is not meeting the needs of Autistic kids. Great yes you are correct, that is true. That is accurate. But then he goes to say that – my dog’s knocking the light over – he goes to say that it’s not meeting the need because there’s too many kids on a wait list. Not enough kids are getting ABA and I…. I disagree. So there’s no mention of trauma, there’s no mention of harm, there’s no mention of how Autistic people grow up and the way that they report experiencing any of these things. Like there’s no Autistic perspective anywhere in this, at all, in any step.
And the word sad. My notes, it literally says the word “sad” in quotes and next to it I wrote “times that’s like well it’s not really 1000” (there’s a bunch of zeros), but it’s just the amount of times like the discussion is shaped around “oh it’s so sad”, “it’s so suffering”, “all those poor families, those poor families, those poor parents.”
And it’s just like OK there are equating in the discussion and in the presentation there was very much an equation of eye contact to connection. Which there is definitely obviously you need to develop joint attention and shared attention and maintaining joint attention, like those are things that sometimes have eye contact, but it was very much talked about in a way of like well if the child’s looking down like there’s just no connection. And it just was very eye contact heavy in those like social kind of norms those social constructs.
And like he would say all the time things like all parents want is a child to “get better.” *silence* And I have to say like there were multiple people in the chat other speech paths, teachers, OTS, whoever, educators who after like, I made a couple comments in the chat about functioning labels and about this that and the other thing. And there were people who were like yeah exactly. So like yay thanks guys that’s really helpful but just comments the whole time like, “can’t connect to the world.”
Oh and it was talking about this idea how Autistic people enjoy repetition and stimming in a way to control the people around us and control the world around us in a manipulative way. So saying that like the reason we do things repetitively is so that we can keep it the same because it’s too complex so we can’t grasp it. And that is not true. We keep things the same for a lot of different reasons. There’s a million different contexts around that, but I would say one of the main things for routine and repetition in that sense is, it’s not because I can’t grasp complexity, it’s because OK well my brain functions differently than those neurotypical brains. So for me to be able to for example, get through I don’t know, get through if I’m at school. For me to get through the day at school as an adult professional, if I have a routine in the morning that’s making sure that I have my food packed and I have this, that and the other thing, my routine isn’t because I can’t handle that planning or those functioning skills, that executive functioning skill. It’s not because it’s too hard for me by any means, it’s because I know that if I take that piece out of my day then I can relax and I can focus on the other things at hand. If I don’t have my logistics taken care of, if I don’t have certain things taken care of, I know that. I’m not going to forget that. So how am I going to move on to this other thing that needs my full attention if these other random things are not taking care of? Routine is a way to help with that. And that is not a complexity thing, that’s not an intelligence thing, that is a way of processing. Sometimes that has to do with anxiety but it’s not inherently a deficit. And so that’s the thing is like, yes a lot of these skills, like a lot of these things come from a good place but what they’re really doing is encouraging this idea that it’s all deficit based like it’s *sigh*.
[13:08] OK so let me let me keep going ’cause I’m kind of getting wrapped up in my emotional reactions. So I’m looking again at my notes – “epidemic.” He called Autism an epidemic. Nope, it’s just getting better identified so not an epidemic, thanks for trying. There was a lot of the historical rhetoric about Autism being a boy thing. And again, I could rant for hours about gender and gender binary and gender constructs and all of that but yeah. It was still not even just talking about “it’s different in boys and girls” it was really like; I didn’t hear that at all. I heard a lot of just like the boy rhetoric. At one point one person spoke up and also was like “hey this is a lot of deficit model or deficit-based language, like bad, this is bad.” Like honestly he was using words like “bad”, “sad” all of that over and over and over again. So someone spoke up and I was like, “yeah, hey thank you.” So like that was cool and he like anyways.
OK so oh at one point he said ABA has changed and it’s playful. No it’s not. No it’s not. ABA inherently cannot be play. They do not make sense together, that is not how they are defined, and I know that’s, nope that’s just wrong. This is only…so this is training started at 8 and my notes, I’m at 9:20 right now. So at this point it was open up for discussion and I spoke up. And so really I just feel like people are missing the idea that ABA is what neurotypicals and historically stereotypically what parents want their child to be. It’s making that child not…like its suppressing Autistic traits, suppressing all those natural Autistic traits. And it’s yeah it’s treating it like they’re bad, and they’re wrong, and they’re not OK, and it’s terrible, and “this poor child” and no. So it just it feels hypocritical to me because it calls out ABA as not being natural and play based but then it takes – what I feel like it really has been presented to me so far maybe other play project consultants and people do it differently but the way that I’m seeing it today based on my training and all that that I’ve gotten so far on day one is that it honestly feels like it’s ABA goals. It’s still trying to make Autistic kids indistinguishable from their neurotypical peers, but it has like a play method instead of some of those more behavioral based ABA methods. And this approach makes more room for using naturalistic neurodiversity affirming methods with it, but the approach itself just feels, I don’t know it feels, it feels icky to me to be scientific.
There were there’s a lot of words in there like “oh kids have holes.” So like that’s what he says where like kids are not doing one thing, but they’re doing this other thing. Where one skill is kind of like a lesser complex skill and ones more of a higher complex skill. And like not seeing those things consistently or always present he calls it “holes”. Which again I just don’t think is the greatest language. Like, it’s a lacking skill, it’s not it’s still emerging maybe, it hasn’t been developed. It’s like there’s more ways to phrase that than saying kids have holes. Lke that’s no thank you. Nope.
A lot of like “use your words.” There was no discussion about AAC use with it. There was very, very much a focus of well he’s doing with gesture and nonverbal and this physical like behavior, which we all know behavior is communication – verbal or not. And it was just very much like oh speech only kinda vibes like there was no… I almost felt like in some of the video examples kids were like dinged for not responding appropriately because they responded with an action or a gesture versus like spoken speech. Which again, different rant, different day, but Autistic people don’t always use spoken speech but that doesn’t mean that they don’t have language. It doesn’t mean that they can’t communicate. Like there’s so much more to communication than verbal speech and I just felt like that was completely disregarded.
[18:00] Like there were words like, yeah so it was, “use your words, use your words” and things like “compliance” and “flexibility”. And you know it’s…kids were “not engageable”. That was a phrase that was there a lot and it’s just like OK are they’re not “not engageable”, they’re like. You’re just not doing it right. Don’t label that child as being problematic or not engageable difficult or whatever it is that you’re projecting on to them because you don’t know how to connect with them. And yeah like they said that (silence). So it’s also very much, it works in opposite I would say with the complexity approach and assumed competence. And you know, using holistic communication like those principles don’t feel like they’re applied here. And oh yes, whoever is asking that, “will this video be on my page afterwards?” Yes, I should be able to save it and post it on my thing after I’m done with it. And then I’m planning to go through and type a transcript hopefully because I realized it’s not captioned and it’s live. Which I hate doing but I will be going back and making sure that there’s a full transcript available along with the video as well so.
[19:25] OK I’ll jump to my next note piece. But they talk about repetitive behaviors and stimming as a method to control things and other people. And that’s just not true, that’s just off the mark. And oh okay so here’s a quote, here’s a quote that I wrote in quotes. It’s a quote (sigh). “What they love to do should change overtime.” So this is referring to repetitive play and lining things up and they’re saying that that repetitive preference in that play like that should change, that they don’t want the child to do those things even when the child is alone engaging with themselves only, not playing with a partner. They literally say “what the child” – Oops that paused, someone called me. But so, no, I don’t want a child to change. I don’t want what they love to do to change. We should take what they love to do, and we should better understand it and we should use that functionally for communication, for connection, for engagement for skill building, for anything. We should not be stopping what a child loves. If it’s disruptive to what you’re doing, if it doesn’t work, if that repetitive thing that you want to change is because it’s stopping what you’re doing, then change what you’re doing. Like no, no.
And so then one of the other major pieces that I have a hard time with is that they use the scale of like functional levels of like one through six I think and it’s basically like based on developmental levels of skills. So like complex language of like two-to-three-word sentences is like the top level and like there’s like joint attention and stuff would be more of like in that bottom, level one. And so basically it’s like, it takes…Alright so let me back up. Those functional levels and those norms are based on neurotypical children and how neurotypical children develop and their developmental milestones. So the functional groupings that they’re using to categorize different behaviors, different communication attempts, different instances of Autistic kids are based on neurotypical norms. So we’ve taken a group of norming on information from neurotypical children, no Autistic children included in that norming sample. And now we’re applying those norms to change Autistic children and make them fit those norms? No. Neurotypical children have a different progression of development from Autistic people. That is because we our brains process information differently. So it’s it I just feel like we would never take for another population for example, we would never take a set of norms on…a set of norms that we only looked at the norm…Example: only had kids who are neurotypical with articulation errors right. So looking at that we would never take the data we got from those children and then apply it to children who stutter, for stuttering. Like we wouldn’t, we wouldn’t. I feel like they’re extrapolating neurotypical norms and saying like let’s apply this to Autistic people. And that’s the biggest piece where I’m like no. There are pieces of this that are wonderful. There’s pieces about engagement, getting down on the child’s level, and playing functionally, and parallel play and things like that, but it’s surrounded by these ableist views of social constructs that are like you know verbal language only, spoken language only. And you know no don’t…hide or don’t show your stims and don’t do this and don’t do that and we want you to fit in perfectly well with your neurotypical peers, we should never know the difference. Like as much as it’s not as harm and trauma based like ABA is, as much as it’s not that – it uses some good play strategies. It feels very much like ABA in disguise to me, in that it’s based off of ABA. Like he got his inspiration apparently from ABA, like he literally hung out with Lovaas and like spent years and years and years developing ABA programs and then used this instead to improve. But like, there’s still all this inherent stuff that is ABA and behavior influenced and it’s not that I don’t think all that.
[24:00] So I think that we could take those aspects out of this approach with time and work but right now it’s just so uninformed with the more up-to-date research about Autism in terms of like prevalence and things like that. And also just the real-life perspectives of Autistic people. Like it’s not neurodiversity affirming. And that’s not to say that you can’t take what you’ve learned in that training if you use it or have taken it or are planning to take it or whatever. You can take those things and you can apply them to more neurodiversity affirming ideas. Like those things you know they can be shifted and moved and to make that easier and make it better and avoid that harmful language, avoid those harmful assumptions, avoid projecting those neurotypical social constructs onto kids but um yeah.
And I like, I’m not here to talk negatively about the creator and the speaker as a human, I’m here to give my perspective as an Autistic person and what it’s like to listen to these trainings. And you know what it’s like to have a better, to have a more accurate understanding of what it’s like to be Autistic and what some of these things might mean. And to then kind of just be told that I don’t know, and to be told that these other things are true, and you know I just I’m poking holes in this. I see holes in a lot of approaches, and I see a disconnect and I think it’s important to be talked about. I don’t think that it’s like again, like this is my honest opinion and this is my honest experience, and this is… Just because I experienced it and it’s obviously tied to some of my feelings it doesn’t take away that like the real experience that I have you know as a speech language pathologist and as an Autistic person. So yeah I just I had to share this because it’s a very complicated thing to talk about approaches. I’m get I get asked all the time, “what do you think about this approach?”, “what do you think about that approach?”, “what do you think about this ?” And I think that I’m just going to stop talking about it until unless I’ve really taken it or unless people are giving me specific like, “OK in this approach I learned XY and Z. What do you think about that or how would you do it?” Because like in a few my videos I mentioned that play project you know I’ve heard great things, it could be great. And like I said there are good things there but as a whole like it’s really not seeming like something that I stand by. And a lot of that comes from the fact that I don’t think Autistic kids need a very specific approach all the time. Like in one of my videos before I mentioned you know, OK well let’s look at their sensory profile, let’s look at their communication, let’s look at all of those things. And one of the people in the in one of the breakout rooms with me brought up was like, “well we like having like, we need that structure.” Like providers want to know like, what are the norms? What are the steps? What are the reasons? And kind of having that cookie cutter like scaffolding of understanding, and approach, and what to do next, and things like that. And for Autism like I don’t know that that is really the way to go. Like every person with Autism, every Autistic person is different and there are totally things that are common and things to be talked about that can be you know applied more like more less individual and more widespread. But I think that our desire as humans to see approaches like that can sometimes take away our ability to realize the flaw in approaching one group of people who are extremely different. That’s one of the first things most people know about Autism, is that every person with Autism is different. And so why are we taking all these approaches that seem to be like this big blanket, one fits all with this very prescriptive stuff, and applying it to these people who are inherently so variable in different and you know it’s (pause).
[28:22] It just makes me it makes me wish I could quit my full time job and just you know apply for all of these grants and funding and create a different approach and a different you know… Set out to do some research and create some norms that are based on neurodivergent humans, not based on how neurodivergent humans have been trying to fit into neurotypical norms for so long. So yeah so that’s my rant. That is my ranting. It looks like a few people have been kind of in and out and a few people mentioned that they plan to watch the recording of this which totally makes sense. I’m mostly doing this live for my own benefit and my own I guess convenience. But I wanna take a second and see if anybody want has any comments or questions like, have you had any similar experiences with play project? Or you know anything I’ve been talking about.
[29:29] Q&A starts
Exactly, Alexa from Speech Hiccups – hey friend – said, “everyone wants a manual that tells them exactly what to do.” Exactly it’s not there’s no. So there’s no manual that tells us what to do and also I would say to that any form of a manual or piece of a manual which a lot of these approaches we’d see…It needs to be informed by Autistic people! OK. And then Anne said, “it makes you do the research into it instead of putting it on us. We need to come up with specific examples and ask that. Would that be better?” Yes and part of this like it’s not I’m not saying that and that I don’t want to go research things ’cause I love research. But people usually ask me questions like very loaded questions of “what do you think about this approach?” or “what do you think about that goal” or whatever. And it’s there’s so much more to their question and it would be a lot easier like you said, if you come to me with specific examples or specific things that I can talk about because, for me to just talk about an approach I’m going to talk for three hours too. so it’s yeah so yes exactly thank you. “Any advice for new special ed teachers? I’m in grad school for sped right now and I feel like everything I’m learning is wrong and it stresses me out. I want to be the best that I can.” Same. Same same same. So and this was kind of mentioned today in the training in response to a lot of my comments was that there seems to be a shift happening right now in education in general. And for students going into sped or freshly out of education or speech or whatever anything having to do with like early development of children or you know education, any of those things. It is changing right now so it is scary and it is stressful and I’m sorry. But also it’s for good reason it’s because we’ve you know been here for years now and there’s a shift in society too that is you know kind of starting to listen more to Autistic people and to marginalized people about their own experiences. And it’s obviously way way way way way overdue but that’s why you’re starting to see that shift and I think Instagram is a nice place to culminate a lot of that and to share it. So, yes I’m sorry that it feels that way I would say that most of us feel that way even though we’re not in school so you’re not alone. Let’s see I don’t wanna miss any of those questions but yeah. It’s there’s a shift happening right now and a lot of it comes from the fact that Autistic people weren’t included in developing any of this over years. And that a lot of it is based off things that is either like fraudulent, like the research into vaccines and linking that to Autism. Like that was fraudulent but then that information stuck around for years and years and years. And a huge piece of this comes from the fact that – so who has access to research right? Who has access to creating those studies? Who has access to those fundings? And Autistic people usually aren’t those people so that’s a big piece of it too. “How do you think we as humans can make the shift from inclusion to belonging for neurodivergent individuals?” Shan, what a question. So there’s never gonna be like that one descriptive or I mean prescriptive manual right. But a good start is just listening to people and using critical thinking skills. So looking at the approaches and things you’re being taught and thinking “where did they come from?”, “what school of thinking?”, “was it Autistic?”, “no.” OK, well let’s think critically about it. Is it behavioral? OK let’s think critically about it. And to really emphasize holistic communication. So any mode of communication we don’t care if it’s spoken, if it’s gestures, if it’s AAC like whatever it is – behavior is communication. There’s so many ways to communicate. So focusing on holistic communication is a huge thing. And for belonging yeah like neurodiversity affirming stuff. Don’t tell kids they can’t stim. Don’t like you know, don’t suppress those behaviors. Don’t use deficit-based verbiage and models and stuff like that. Like one of the things in the trainings that he just kept going over and over and over again was like that idea of that Autistic kids live in their own world. That they like we need to like he would say things like “we need to get into their world” or “they might let us into their world.” And like that’s not true. Our world is separate because we haven’t been allowed to flourish and to express, and to share our world. So we aren’t in our own world when we’re not engaging in something or you know hiding from something that’s aversive or painful or harmful. It’s not because we’re in our own world and we can’t get out and you can’t get in. It’s because what you’re doing isn’t helpful and that’s our response to it. That is how we respond. So it’s a long answer in a short answer Shannon, but the short answer is: listen to us. You know be open to learning and growing and changing your mindsets and your perspectives and just use your critical thinking skills.
[35:04] Conclusion/Wrap Up
So a few other people just joined. I’ve been talking about the Play Project training today. This video will be recorded, and I will hopefully have the transcript eventually posted as well. But for a couple more minutes I’m just going to keep going through and answering anymore questions anybody has so feel free to ask. Oh OK so here’s some things to think about too, before I get out of here. There was a lot about…every time I started to talk about adults it was very much…granted like the training was about children and it is an early intervention training/early intervention approach, so we were focusing on children. But one of the things that I was brought up when I mentioned something about the children and adults, and I connected like oh adults do that too and something to that effect. There were more comments about like “Oh well…” OK so I’m kind of going about this in a random way because my brain is fried ’cause I’ve been doing this all day. But basically there was an acknowledgement that adults are separate from these kids. And I think that that’s like a dangerous assumption. If we treat the kids that we’re treating or working with as if they won’t, like if we’re not thinking about the adults they are going to be we’re doing them a disservice. And if we’re not consulting adults that used to be those children, we’re doing them a disservice. And something that I see a lot of Autistic people mention is the idea that people in certain fields, adults, professionals, whatever, who have a lot to say about Autistic kids and “treating this” and “treating that,” they say things like, “well those kids can’t tell us that so we shouldn’t assume that they don’t like it,” or whatever. And so the idea that they’re really portraying and really continuing is that: so we can’t tell you how we feel when we’re kids when we’re Autistic kids, but then when we grow up and we work really really really really really hard to be able to express ourselves the way that we want to and we express these things that we couldn’t express as children as adults to prevent it from happening for more children we get called out saying “well you’re an adult you don’t get it” or “you can talk right now so you don’t know what this kid who’s preverbal or non-speaking feels because you’re an adult who’s talking to me right now” and it’s like no. So there’s just…OK I’m going in circles, but the moral of the story is that there’s a lot of ableism in education and in the realm of Autism and it…Things are on the cusp of changing, hopefully, kind of, maybe, sort of, who knows? But really we need to be more informed by the Autistic community. And we need to be ready to change and abandon some old views and some old mindsets and some old approaches when we realize they don’t fit. Yeah OK, well thank you for everyone for your questions and for listening and all of that I will be posting this hopefully soon.