This online panel discussion from 27 May 2021 is the second in a series of discussions within the autistic community to progress towards a ban of all forms of autistic conversion therapies (including ABA) – in New Zealand and beyond.
Panellists:
- Allison Hoffmann, Neurodiversity in Education, United States
- Jake Pyne, York University, Toronto, Canada
- Terra Vance, CEO and founder of Neuroclastic, United States
- Sarah Selvaggi Hernandez, The Autistic OT, United States
Facilitator:
Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, New Zealand
Topics and questions explored
- The first panel discussion highlighted the need for adapting education systems to the reality of neurodiversity and to the intrinsic motivations that drive autistic ways of learning, so that parents are less compelled to find ways to “normalise” their children. What would learning environments that are optimised for the needs of autistic and otherwise neurodivergent children look like? How would neuronormative children learn and develop in such inclusive environments?
- In our campaigns to ban conversion therapies in New Zealand and globally, which organisations and interest groups are suitable allies? For example within the Design Justice Network we have created a neurodiverse-collaboration channel, and we have established an ongoing collaboration around an intersectional community powered Employer Rating / Employee Wellbeing Service with a focus on cultural safety and psychological safety.
Any questions that we did not manage to cover in the online panel will inform our online advocacy work on blogs, social media, etc.
In case you have not already done so, please also sign the current petition to ask the New Zealand government to investigate the consequences of all forms of conversion therapy, including conversion therapies that target autistic children, which are often branded as Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS).
Note: all international support is welcome as well. Those who don’t reside in New Zealand can sign the petition with postcode “0000”. This allows us to easily distinguish the level of local support from international supporters.
Transcript
Jorn Bettin:
This is the second panel discussion towards a ban on all kinds of conversion therapies including ABA, especially for conversion therapies for autistic people. I’m really grateful for all the panelists who have joined us and the listeners As usual we’ll record the session and make it available online so it becomes an educational resource. We’ll start with a quick round of introductions. Ally? do you want to start?
Allison Hoffmann:
Hi, I’m Ally Hoffmann. For the last five years I’ve been teaching as a neurodivergent teacher in a neurodiverse classroom. It comes with a lot of its challenges even socially but it also I don’t know the struggle it intersects and provides a lot of empathy. I’ve been using this learning experience. I know the teacher word can be kind of triggering for my students and in the last five years that I’ve been teaching in three of those years a few students, actually three different students, have referred to me as a tree, so I guess I could reintroduce myself I’m Allison and I’m my students’ tree. I think trees provide a lot there. I continue to be an independent advocate and researcher outside of my labor identity but it is something I feel very passionate about, so I do include it in my introduction.
Jorn Bettin:
Jake, do you want to continue and introduce yourself?
Jake Pyne:
I’m a trans academic in a social work department. I teach in the School of Social Work at York University here in Toronto in Canada. I’m non-autistic myself I find more and more that I share important things with autistic people. I guess I want to start by just saying how deeply impressed I am by autistic activists like yourselves and others. I learned so much from the work that many of you are doing and you have my respect. I think my main contribution maybe will be just to connect us to the struggles to end trans conversion therapies. It’s a story that I was very involved in here in Ontario which is a province in Canada that I live in, and was involved in the sort of legislative process to have that banned and I have sort of written about that in connection to ABA. And my hope that we that we see a ban on ABA in our lifetime. We’re farther behind here in Canada, so I’m saying in our lifetime. I think you are closer to that and that’s really really exciting, so thank you. I’m delighted to be here.
Jorn Bettin:
Thank you Jake. You’ve done amazing work and I’m looking forward to ongoing collaboration on this particular topic. Terra, if your connection works perhaps introduce yourself.
Terra Vance:
My name’s Terra and I am the CEO of Neuroclastic. We are a non-profit org and a publication. We have over 400 autistic contributors and an all-autistic board and we focus a lot on ABA. Maybe a quarter of our thousand approximately 1 000 articles are centred on behaviourism. I used to be a teacher for 14 years. I taught English and I was a trauma counsellor after that, and while I was a teacher I was our school district’s anti-bullying coordinator, and so I feel that that’s all relevant experience. But very briefly my last normal job was as an RBT that is a registered behaviour technician in ABA. I didn’t know what it was at the time and I took the job. I was only there for a month and that was enough to know that this is something that I’ll spend my life trying to dismantle.
Jorn Bettin:
Excellent. Thank you. Sarah, do you want to introduce yourself.
Sarah Selvaggi Hernandez:
My name is Sarah Selvaggi Hernandez, and I am on the advisory board of Neuroclastic, the wonderful organization which Terra referenced. I am autistic, I’m deaf, I am fourth generation indigenous Penobscot from Maine. I was the first openly autistic person elected to government in the United States and I also run a social media site called the Autistic OT, but professionally where a lot of my work lies is paediatric mental health. I do a lot of identity development work, but I’ve also worked in patient and community settings and really to bring out the importance of being able to do what you want to do in order to figure out what your identity is, and that kind of goes against what ABA is. I’ve worked with ABA in the field I have taught with ABA and as a mental health practitioner I have serious concerns, so I have also dedicated my life to joining Terra and all the amazing advocates out there who are working to dismantle the system, because that’s the only option.
Jorn Bettin:
Excellent, thanks very much. My name is Jorn. A few years ago I started this website called Autistic Collaboration that since evolved into the Autistic Collaboration Trust. The whole thrust of this website and the trust is really to catalyse autistic collaboration and new divergent collaboration, so that takes on the form of long-term projects, initiatives and even autistic organisations, what I refer to as Neurodiventures, and so I see this entire initiative here it’s a wonderful autistic collaboration project, so thank you very much. Let’s get into the questions that we’ve got, perhaps we can pick up where we left off in the first panel. I’m going to read the question here.
The first panel discussion highlighted the need for adapting education systems to the reality of the diversity and to the intrinsic motivations that drive autistic ways of learning, so that parents are less compelled to find ways to normalise their children. What would learning environments that are optimised for the needs of autistic and otherwise new divergent children look like? How would neuronormative children learn and develop in such inclusive environments?
The floor is open. Anyone wants to start?
Terra Vance:
I’ll take that. I’ll start. One thing that I want to emphasise always, not not just in this panel, is the value of encouraging self-determination and this is something that most children have built into society for them, but society does not seem to value self-determination when it comes to children with disabilities and especially autistic children, and the whole foundation of Applied Behaviour Analysis is to remove access to self-determination for autistic children, and so what a truly inclusive, I i call it neuro-inclusive, classroom, how that would look would be a classroom that centres protest from children. We want our kids to be able to self-advocate and to say ‘this does not work for me’ and we want to accommodate that. We don’t ask our children ‘what do you need’, ever. We tell them what they’re going to do and expect them to do it in the way that we tell them they should. For most children this is not optimal but it works to a degree because the steps that we have planned, the things that we know about how kids learn is not all kids, it is most kids and so, you know, when we say things like, we’ve totally thrown out rote memorisation 100 percent. But that is how a lot of children learn language, a lot of autistic children and otherwise disabled children, and it’s not that we should only do anything, we should do lots of things, we should tell kids it’s okay that one learning style is not optimal for you, this is why we’re going to teach this with all of these different modalities. It totally is possible to run a classroom that way. I’ve done it for 14 years and it was very effective. A neuro-inclusive classroom is a classroom where we start at the beginning of the year telling children that you all learn differently here are optimal ways or here are several ways, we’re going to discover what ways work best for each of you, and then we’re going to try and accommodate that. Some children need to move to learn, so we have some children in seats that have a bouncy ball in the middle, and if some kids need to stand up and they need to shake their hands and they need to walk around the back of the room. that’s okay. We will learn how to accommodate your learning style and we’ll work on that together. That is what a neuro-inclusive classroom would look like.
Sarah Selvaggi Hernandez:
I i can just continue forward with that a little bit. Terra was talking about self-determination, and as part of developing identity another important cornerstone is what’s called self-actualisation, where self-actualisation is when you understand yourself and you understand the way that your body works and your body moves and your body takes in information. One of my other specialties is sensory processing excuse, and that is so fundamental for people, especially neurodivergent people who are more sensitive with sensory, to understand what’s that information whether it’s coming from the physical environment, whether it’s coming from the expectations of a task, how that does that come into you and affect your body. I do a lot of work around first validating that and also giving people the tools to realise who they are, what they like what they don’t like and my specific concern with ABA in any compliance based program is that it grooms out those opportunities for self-actualisation and in fact the individual experiences something called identity foreclosure which we know in the literature again, anxiety, depression, trauma. Identity foreclosure occurs when somebody else has determined your identity for you, and in any type of conversion therapy, that is the goal, it is to turn somebody else into the version they want. We’re talking about this from a paediatric standpoint of identity development but if you look at the lived experiences of autistic adults who have gone through some type of whether it was conversion therapy itself, those of us like myself who grew up queer in a religious environment, people who grew up in very fundamentalist or very strict families, we know what that’s like to have those demands placed on us so that we cannot show our authentic self. We know from the literature and from the experience of autistic adults that what ends up happening is a lot of mental unwellness, not because we’re autistic, but because of the disconnect and the dysregulation of living in society that doesn’t want us. One of the things that ABA is notorious for is grooming away those “unwanted” behaviours. Well, I want them because behaviour is communication, and how are we going to learn ourselves and be self-actualised so that we can self-determine, so that we can self-advocate without this information? Any place that doesn’t allow rebellion, I don’t like this it hurts. I don’t want to be, I can’t be who I am, I can’t move the way I want to, no thank you.
Jorn Bettin:
Excellent. Ally, what about your experiences and thoughts on this topic?
Allison Hoffmann:
There are so many things that I want to echo and also support, like the self-determination and centring the protest. How else do you teach self-advocacy or how would you claim to teach self-advocacy and then not encourage to protest, not encourage “no”. This is where I’m uncomfortable, because it’s not about our kids fitting in, it’s about us fitting in around them. I don’t want these shaved off people trying to fit in to my classroom. It’s not my classroom. I think that a neuroinclusive, I love that word, classroom, you know it’s going to dismantle power dynamics. My kids and I are going to collaborate. Supporting needs isn’t speaking for what you think they need, right? I’m teaching self-advocacy, so supporting their needs means consensually collaborating, consensually challenging their potential and encouraging their strengths, kind of in this like simultaneous balance, because you have a lot of students, and I want to speak and I know that we’re all probably familiar with terms like trauma informed and things like that, but it’s really weird and hard and sad to have a first grader come into class who’s already totally traumatised by the classroom. That’s why when I introduce children to this classroom, I tell them that this is a, I don’t need to tell them, they’ll figure it out, it’s a safe place with an even safer place to hide. I think a neuro-inclusive classroom has a place to hide. We’ve called it the Nook, we’ve called it the Fort, but as a classroom we’ve worked together and we’ve designed a safe place to run to, and for students that I think, and this is where we kind of draw in the juxtaposition of the problematic situation with ABA, is that we know ABA addresses behaviour as like a function of either getting something or escaping something, and we know it’s so much more than that. But when you look at it like that you’re limiting a) getting what you need and b) getting out of what’s uncomfortable, so I know it’s weird sometimes and I know other teachers have looked at me funny, but I have let my students run out of the classroom because not only is it a safe place with a safe place to hide but it’s a place you can leave, when it’s too much. Because that happens. You’ve got different sensory profiles in mass. I’m just an associate teacher. I don’t have the letters after my name, but I have great conversations with the teachers I work with, and something I try to remind them a lot is you don’t have a classroom, you have a classroom of this many different brains, this many different experiences, this many different needs, and that means addressing ourselves, right? So a neuro-inclusive classroom has teachers that have confronted the shadow. A neuro-inclusive classroom has teachers who kind of address their own metacognition and cognitive dissonance. I’m going to look at my black and white thinking. I’m going to look at my rote behaviour, my rote reactions, my rigidity of thinking about how students should act in a really uncomfortable chair, it means looking at the classroom as an experience. Here’s a sensory experience. I might have a kid who’s distracted who looks bad but he’s just sitting under the AC. Easy. That’s because kids do well if they can, and a teacher who confronts themselves confronts their philosophy because there’s a lot of teachers who think kids do well if they want, and that’s kind of weird, that puts me in an uncomfortable situation, that means I’m the person who has to make them want things? No no no. And that’s weird because that’s something that ABA does. They try to motivate kids into wanting to act a certain way, and so I think, to kind of close this up, a neuro-inclusive classroom is also going to take a look at what learning looks like, because learning looks different for everybody, the experience is different, learning looks different, and as a teacher we need to consider those things. How does this identity of this kid incorporate into their learning style? How do they do well? Not because I made them want to with a skittle, but because they could because they were in a comfortable chair with the trampoline in the middle, because they were on the floor, because they were able to pace around the classroom, because I knew that I had to lower my voice for this particular student. It just takes thinking about those things, it takes empathy, and I think that radical empathy requires vivid imagination. And I think that’s why neurodivergent teachers do well as well, when they can.
Jorn:
Brilliant. We’ve heard excellent points here, and maybe I just fill in here to articulate a few things that emerged from the last panel and also my own thoughts. One way I describe autistic ways of learning, in particular with children, is that in many ways the dominant direction of social learning is reversed, so it’s that parents and educators, if they’re dealing with autistic children, they are the primary learners. They learn from the child about the specific intrinsic motivations. They learn about what the child is discovering, and since every child has their own cognitive profile, there’s some really valuable things to be learned, and once you realise that the learning is this bi-directional process, and with autistic children I would argue there is so much that the teacher or the educator or the carer needs to absorb and learn, that that makes a fundamental difference. One nice thing that was mentioned by Laura leading up to the first panel something that I think is the intuitive technique in which autistic parents engage with autistic children, but in the UK they use it in an educational setting. It’s known as the Low Arousal Approach. I don’t know whether you’ve heard about that. It’s very interesting and for me it’s just, well, that’s how you deal with certainly with autistic children, and I would deal like that with any child. Start with yourself: Are you in a stressed state or not? Introspect and make sure that you’re in a calm state, that you don’t project stress, and then look at the environment. Is the environment calm, not over stimulating? It’s in this environment that you can then start engaging. I would then start by looking at what are the intrinsic motivations. What do these children actually care about? What would they like to learn? In the low arousal approach talk about personalisation. To sum up, it’s a low stress non-overwhelming environment, and then personalising it, individualising it based on the intrinsic motivations. I think everything that you’ve just said here in your synopsis of experiences is consistent with that. I’m really keen to hear from Jake from your trans perspective, how you experience this or what your thoughts, are because I imagine that trans children will also be subjected to extreme pressures in typical environments.
Jake Pyne:
I think they are. There are some there are some important differences too. I was just making a couple of notes while the other panelists were speaking. That was great. I loved hearing what all of you had to say. I don’t work in the children’s or youth education system. I teach at the university level. I would defer to autistic people who’ve experienced schooling, which is all of them, and teachers who work in that system. But someone that I really appreciate is Nick Walker, who know you might know is a non-binary autistic academic in California. Nick asks why do we call it education for non-autistic children, but for autistic children we call it treatment, why that distinction? Why do we call it raising a child when the child is non-autistic, and again we call it treatment with autistic children. What I’ve learned from autistic people in my life is that a decent education would have to value autistic ways of being, but would also have to stop overvaluing non-autistic ways of being. Stop overvaluing them, stop considering them to be the markers of the things, you know health and well-being, that they are just not markers of. Robin Russigno, I think I’m pronouncing her name right, is an autistic academic. She works in education, and she has an article, I think it was in 2020, it came out last year and she’s writing about the the degree to which (I can put all these links by the way I kind of tried to collect the links to things I was going to mention so I can put them in the chat) and she wrote about the degree to which ABA is embedded in the education system, and how dangerous that is, but also how the concept of problem behaviours, like what is a problem, keeps expanding. It keeps expanding to include more and more things that are problem behaviours and allows more and more ABA targeting of autistic children and then also allows the really egregiously harmful practices. I think that subtle ABA is also harmful, but the really egregiously harmful practices which is things like physical restraint I think also, you know one of the words that I hear, again I don’t work in education per se or not children’s education, but one of the words that I hear used a lot is inclusion, and I’m in favour of inclusion as much as everyone else is, but I guess I just wanted to note that I think that words like inclusion, general terms like that can’t do the work that we need to do here, because it doesn’t get to the heart of the problem, or it doesn’t get to the heart of the problem with ABA. Autistic children are not exactly being excluded in schools, of course they are excluded in many ways and I don’t doubt that on the playground, in many settings, but exclusion is actually not what ABA does. It does the opposite. I’ve written about this with trans kids, in terms of, it’s a very very detailed very dangerous form of inclusion in the sense that it brings them closer. it is not a pushing out. It’s a bringing them in, they’re under surveillance, they’re under surveillance for 40 hours a week in some cases in the case of ABA, and it’s observing them very very carefully documenting everything they do, it’s insidious. It studies them so closely and so carefully and then uses that knowledge against them, you know it uses the knowledge that is gained of them, against them, and that is just not an example of exclusion and so therefore the term exclusion, as much as I’m in favour of it, it doesn’t do the work that we need. It doesn’t take us where we need to go. And lastly I would just add, understanding the power relations involved in ABA, it helps to also understand that the ABA practitioners themselves are also groomed. They are groomed, they themselves are subject to surveillance by their superiors, by their trainers or their supervisors, as our parents, as our teachers. There’s sort of a chain of hierarchy, and ultimately the child is on the bottom of that hierarchy. But ABA practitioners are not on the top of the hierarchy, they are they are in there and they are also being observed. That’s part of the power relations of ‘I have to change this child because I have to report back on whether I’ve changed this child because someone’s watching me too’. I think that also those are those are important dynamics. Maybe I’ll just put a little link to an article, Julie Grueson Woods is an academic in Toronto who’s done some work with this I’ll just put a little link there in case it’s helpful.
Jorn Bettin:
Thank you very much and I think this ties in what we just heard earlier about the need for safe places for autistic children and autistic people in general because social settings or environments are not always safe for us and often these safe places are simply not there. It’s also interesting that if you observe these social power dynamics. I think autistic people and autistic children are highly aware of those, and one way also to describe autistic cognition is that we are hypersensitive to these power gradients because we don’t accept arbitrary authority, we don’t just execute demands, this is not our way of being. We want to show you what we discover and then ask questions and then would like assistance maybe, so this is a very different mode, and that has implications for inclusion not only in education setting. I work with organisations, with companies, where there are many undercover autistic people and there in the workplace I see these social power dynamics all the time, and if we want to create healthy work environments for autistic people, these work environments need to be organized radically differently, and we can never be included if we’re just the one autist in a whole team or organization of non-autistic people. We need the ability to have our own team, our own autonomy where we don’t have these social power gradients because this is not our way of being. And that’s I think very very hard to understand for people who are indoctrinated in in western industrialised culture.
Allison Hoffmann:
I was wondering if I could reply to that because it’s been so interesting, I think naturally observant individuals keep observing and it has been curious to watch the leader of a classroom implement, or attempt to implement, a power dynamic to a community or population that’s just like – right? And then label it defiance when really it’s not that at all, why, why to what end? I have found myself when you say when teachers train other teachers and say ‘oh well you know you should get on their level’. I think it’s interesting to me to consider how an allistic or neurotypical teacher might be so literal about that, and might be like, okay, and they get down on their level, and I’m like, ‘you need to look through their lens, we need to consider what the situation is’ There’s not the projection of defiance, the projection of a power struggle that’s non-existent. I know there’s another question on here about specialists who don’t stop practices and things like that. So I don’t want to lead too far into that, but I did just want to reflect on that. I think, being an observer you notice that a leader, let’s say a neurotypical teacher, is trying to teach to the wrong audience, and you just kind of sit back and you’re like, there’s a disconnect here – does not compute. It’s difficult for me sometimes to make these observations in my everyday and then struggle to communicate them in a way that also doesn’t come off defiant or insulting or with an ulterior motive. So, when I sit back and think I want to dismantle these power structures, I definitely picture there’s a group of people that don’t see them at all, and those are the ones I’m dismantling this for. Those are the ones that I’m taking a look at these scaffolds and coming in with my wrench, my gentle wrench.
Terra Vance:
Yes, were you have a wrench I tend to be more a battering ram. That’s my nickname. That’s been my nickname from time to time. I guess it fits, but I think one thing I want to bring up is oppositional defiant disorder and now there’s PDA, pathological demand avoidance, for autistic kids or adults, that a lot of our community has embraced because they find so much they relate, but I think I call PDA “power differential aversion” and that acronym fits, and I love it. That is exactly the way that I parent, that is the way that I that I approach teaching, not because I knew but because I’m wired that way. I never enjoyed, I never felt power differentials. They don’t make any sense. They fuel all inequity, that white supremacy and homophobia and just any bigotry, elitism and classism. And so I just want to say that when I started I said a neuro-inclusive class empowers children to protest, and I think that we should love that about children. We should feel proud when we see them self-advocating and we allow a lot of children to self-advocate. We allow a lot of children to ask for consent, but we do not give autistic children that kind of access to live and to self-advocate. I think that saying that to teachers, to most teachers, feels radical. They would say ‘this classroom will be bedlam, it will be crazy, we won’t be able to manage behaviours’, and I think that the opposite is actually -true when you allow your children to be invested in their own learning, they love to. Children are natural scholars, especially autistic kids. They love to learn. We just have to stop forcing it on them.
Jorn Bettin:
It’s interesting that these power dynamics are built into the language we use and they are built into the entire education system and the school system. You notice the word behaviour management. I don’t consider behaviour as something to be managed. I think if you’re not autistic it’s very easy to ignore all these cues that our environment provides us, with all these power dynamics. In the workplace there’s of course another dynamic. Often autistic people are at the receiving end of the power dynamics, but there is also the weird opposite end where if you’re expected to manage people, then autistic people take to that very differently, because they want to do this without power dynamics. This is why during the few years where I was employed, more than 20 years ago, I always mysteriously ended up in these team leader roles, and I think it has got to do with the fact somehow I was someone who could catalyse collaboration, and if you’re a person like this then well these career letter climbing systems they’re just toxic, they are deadly in the end. I think that’s what we suffer in the workplace, which is why we need to create radically different workplaces for autistic people. Just getting us jobs in corporations actually kills us.
Allison Hoffmann
I think a lot about these systems and how we as individuals are products of these failed states. When I talk about teachers needing to do that shadow work, we need to look at how the failed state is within me. I can address it and I can dismantle it and then bring my work outward, or not noticing the certain cues in the classroom. I heard you say maybe it’s easier if you’re not autistic to ignore certain cues in the classroom. It’s also kind of like well we’re also looking for the systems in place to be the signs to guide our way, and we’re not looking for neurodivergent cues, we’re not looking for different languages, we’re not even looking for … what are we looking for when we walk into a classroom, when we walk into a workplace, when we look at workers? Why, when we walk into a classroom do we look at our children as just simply future workers. I think there’s a lot of mislabelling that happens not only with oppositional defiance and things like that, but, hello, we have an individual putting like an authority on an individual who can’t absorb that sense, and then we’re mislabelling it defiance. Now we have a diagnosed person on just some pipeline to shame. In the same way I feel that there are teachers who try to address things and I feel like there are even schools and education that try to address things and be like, okay so you have this gift but you have this lagging skill. But even then it’s called a “lagging skill”. A skill for what? Working? And so sometimes we look at these behaviours and we’re like, oh well it’s not their fault it’s not defiance, it’s just a lagging skill. I sometimes have to call and alight and I don’t have the answer here and I’m like why are we calling it even a lagging skill? Isn’t this individual human just lacking support in a specific area? Why are we talking about skills?
Jorn Bettin
We have to realise that every human depends on other people in unique ways. We’re not standardised cogs in the machine. The construction of our society gives us a simplistic model for the complexity of the support network or the relationships around us. We need trusted relationships. If we have those then those other people around us, if we trust them that means they understand us and they can support us in a way that makes sense to us, and if we don’t have these relationships, then we we suffer. This complexity is ignored in the ideology that our education system tries to teach us. It would be time for the education system to step up and to step out of the industrialised factory model. It’s ironic that people are lamenting that people who leave the education system seem to have lost their sense of creativity. What we’ve just been discussing is all the ways in which it is systematically bred out of people. It’s the system. I’m conscious of time.
The second question is also really important and that’s a question about allies.
In our campaigns to ban conversion therapies in New Zealand and globally, which organisations and interest groups are suitable allies?
I’ve got a few thoughts on this that I might just throw into the room and then you can add to this and we’ll see where it goes. I’ve jotted down a few things here. One is an online network organization called the Design Justice Network. I joined them last year. They started out in the U.S and they are expanding globally. I’m basically trying to expand that network here in our geography, New Zealand, Australia. In that organization very quickly I bump into all kinds of nero-divergent people and autistic people there. Because they’re concerned about social justice, it’s a very interesting organization to collaborate with. I think this would be a way for us to connect with people who.. there are the diversion people there as well, but it connects us with the wider world. The other group that I deal with on a regular basis, and we don’t even mention autism and related topics, is all the undercover autistic people who work in healthcare and various technology settings and so forth. They tend to approach me in outside work channels.I think it’s an untapped resource that is easily overlooked because if one in 30 people is autistic or you’ll find them everywhere. In some sectors the proportion is even higher. In healthcare or technology it’s perhaps more than more like one in ten people. National organisations that represent disabled people can be good allies, and what seems to be a bit of a mixed bag is the LGBTQ+ communities. Those are the four things that I jotted down. I’m keen to hear what are your experiences and what you would recommend, because it’s only by building allies that we can really gain moment. Here in New Zealand I’m also involved in working with Māori communities, so indigenous communities. I think it’s a larger marginalised group and my experience is that we are extremely well equipped as autistic people to build relationships with people from other marginalised groups because we understand all these sort of subtle forms of power dynamics so well.
Sarah Selvaggi Hernandez
You mentioned professional organisations and I think that’s a great thing. Personally have had an idea because as an occupational therapist I actually struggle to have other occupational therapists come on board with a neurodiversity paradigm shift because, intellectual defensiveness and also they would have to admit that they were participating in practices that could have been harmful to the people that they were working, so there’s a lot of defensiveness around that. However where I find medical allies so like in the OT world, is by going to the people who are not in education, but going to the people who do physical rehab, or physical therapists, or people who go in and understand the importance of being able to move your body and having the autonomy to make those choices. It’s almost like with professional organisations you want you want to say oh I’m going to go to the people who are most involved in this particular system. and that’s not hard itself. You go to the people in the organization who really don’t have a lot to do with like education ABA but can understand humanity and we’ll get on board with you, otherwise it’s very difficult or it’s challenging to address those organisations. My other favourite, holy mackerel, the students. The students are ready to change the world. If you get those college students, the grad students, oh my god they’re excited and they’re ready to go. I almost bypassed the teachers just to get to their students because the system hasn’t groomed them yet, and so if I can get to them before, it’s just such an obvious … you know neurodiversity it’s a shift. I really don’t think it should take much time for people to understand that autistic people are people who have human rights. So the students and then the people who don’t have something to be defensive about. that’s my good allies in organisations.
Allison Hoffmann:
I’m so excited for what you said. I’m excited for the connections it put in my brain, because that immediately made me think of my new foray into trying to understand tik tok, and how that’s a language. When you think about it the kids are older now, there’s kids who experience ABA who can talk about it you. I don’t know if they’re of an age where they could be sharing a story, I don’t know how that works out. There are the youth and then also the non-defensive either clinicians, people in the medical field. I think that that made me connect to what Jorn said about the undercover autistics.
Terra Vance:
I have found the most amazing allies in the black community. We have to focus more on black and indigenous and brown melanated autistic people because the intersections of dehumanising and removing culture from people, ABA is like an extension, a machine of white supremacy when we really break it down and look at what it what it really is. I’ve been doing a lot of advocacy for autistic people who have been unjustly prosecuted and sentenced in the criminal justice system, and I’ve been working with these these orgs, I’ve learned very much that black lives matter, you know some of the local chapters have been amazing and they have been so supportive of us and to learn our language, the language of disability justice, and to fold that into their activism and to really authentically mean it and fight for us. That has been one source of reciprocal allyship that I have loved. There are restraint and seclusion orgs that want to ban prone restraint. That is not just an autistic thing but we are very much the victims of it, more probably than any other demographic. They have been pretty amazing to work with us and you know we start calling people allies and it’s very soon that they they realise that they have so much in common with us, they’re autistic too. A lot of people that I would like to call allies, they’re now part of our community because they just realised. There are a lot of teachers in educational groups that I have been working with that have been very … they don’t want to deep dive, they don’t want to jump into the deep end, so that is something that I want us to strategise about. They are afraid to take on the behaviour complex because it is so entrenched in everything, and so how can we help them to separate behaviourism from what they want. Because it’s really behaviourism that’s ruining that vision they had in their head of what they wanted to do to make a difference in kids lives. That’s why they went into this low paying career that’s not ever going to be financially as rewarding as the amount of investment they put in, but what is making it impossible for them is behaviourism. I would love to figure out how we can work with them to separate and to show that behaviourism is really what’s wrong with everything that’s wrong with education.
Jake Pyne:
I will add a couple of thoughts. I wanted first just to nod to Stacy Easton who’s on this call, who’s an academic and activist here in in Toronto who I learn a great deal from, so we’re lucky to have Stacy on the call. I really appreciate everything that I once said especially pointing to racialised communities as really good potential allies here. I think an obvious connection is know om queer and trans movements to ban conversion therapy which have been successful in some places. But there are pitfalls that we can see in that history too and I’ve tried to write about that. On last week’s panel Kim Crawley was talking about the ignorance and the lack of solidarity, how frustrating that is, lack solidarity among queer and trans people who are very happy to have banned one type of conversion therapy, the type that affects them if they’re not autistic, and I agree with Kim. I wanted to add to that though that the the context of that lack of solidarity is important. If you want to understand it you want to change it, because it’s not necessarily a lack of investment, it’s an over investment in not being sick, not being seen as sick or ill, disabled or mad. The sort of movement to de-pathologise gay and trans identities is a very powerful movement but is sort of studded with all of this ableism in it. We’re not disavowing illness and madness and disability etc, and that is harder to work with. It’s not impossible, like actual queer and trans liberation requires giving up on the attempt to show that we’re sane or healthy or what do these words mean, and in the meantime queer and trans people benefit a great deal from disassociating ourselves from disability and illness, and that’s what we need to work with. A couple of points that I just wanted to add that I think are important in terms of … things we did here in the push to ban trans conversion therapies, queer and trans conversion therapies, in in my province, is developing alternatives, because you could spend a great deal of energy trying to ban ABA and for whatever reason you could not be successful and you still need those alternatives to be pointing parents who come looking for supports or advice. But you can also succeed in banning ABA and it still leaves a gap in its wake. I think if alternatives become more widespread, then those practitioners would hopefully be publishing, they’d be doing research, it begins to change the literature, the sort of body of literature that exists, but autism begins to tip.
Jorn Bettin:
I think this is why I found it so interesting, I think this comes out of the UK, this low arousal approach. There has been research about this, it’s been published and it’s framed as a teaching approach, an educational framework. It’s not a therapy. We need to say that the alternative can’t be a therapy, it’s an educational approach, and the educational approach applies as much to the children as it applies to the parents and the people around autistic children. I think that’s so important. And perhaps some parents need a form of therapy because they are so heavily vested in the culture that their world falls apart if they learn that their child lives in a different world.
Sarah Selvaggi Hernandez:
It’s because they’re probably autistic too. A lot of times when a parent or people find out when their children are diagnosed as autistic, adults go through that process too and one of the biggest things is that autistics really like a manual. You know, we want to know how to do it and so, of course we’re going to be trusting of the medical community, of course we’re going to go seek out people who are going to tell us, oh this is what we should do. I agree with the comment that was made that we just need to continue to create alternatives so that there’s not that. I worked in ER forever and I love it. I dealt with traumatised parents, just to get them to a point where they knew they didn’t do something wrong, and that their child was perfect and precious and special and we’re gonna have a lot of fun. But it was I would say almost six months typically of working with parents.
Jake Pyne:
Thank you. I’m really glad you brought that up Sarah. In terms of the trans health world there was a big sea change over the past decade or so. To shift from with small kids, trans teens do need things like, or they might need things like puberty blockers, hormones, on the road to medical transition, but with children these are not relevant, and so there was a big sea change in the field to say ‘stop seeing children actually’. Practitioners, therapists etc start seeing the parents and start saying that when parents call, saying I don’t see children actually, you know, I have a play group where they play with one another, and I find it’s the parents that need the support because you want to work with parents around things like shame. Parents of all kinds of kids who differ in some way from a norm feel ashamed, okay we can work with shame, we know how to do that. I want to add just a couple more things I was just trying to say, which was around developing an alternate alternative set of experts on board, and that’s complicated because courting non-autistic experts of course has some tricky things in it, because sometimes they want they want it to be their show, but anyway having another set of professional voices can try can can help. I think crafting simple messages helps. Sometimes you lose some nuance when you’re trying to like engage public support for something. but really simple straightforward messages, like amplifying the similarity, conversion therapy is one of those messages, where you where it gets people. They know conversion therapy is bad you, get them connected to something they know. I think what you’re already doing which is building power like building power among autistic in autistic community. I noticed a small disagreement on the panel last week between Kim Crawley and Laura Dilley that was seemed to me about the place of anger in social change work. Nobody named it as that, it was just my observation. I agree with both of them, but that they’re like sort of like the very reasonable respectable voices that are useful in these debates, they help to accomplish things, but to not disappear the place of anger and social change, that it really really matters. And it turns the tide sometimes. And lastly to plan for backlash. As you as you begin to have more of an effect like as you become more successful against an industry like ABA where people are very invested and very financially invested, I think the power begins to shift. I was sued for three quarters of a million dollars over an op-ed that I published during the shift to end conversion therapy in Toronto in particular. You can imagine that lawsuit changed my life a great deal during that time. People who are accustomed, this is my opinion, people who are accustomed to having power, and I think ABA therapists would be those people accustomed to having power over a particular domain, sometimes respond to losing power with rage, and that people will laugh as long as they have the power in a scenario, they will laugh at trans people who suggest you shouldn’t treat us this way, autistic people. But when you become more successful and they begin to see, oh there’s a loss on the horizon here, they stop laughing and so this means planning ahead, it means understanding very carefully what are the defamation laws in the area that you live. How are those laws interpreted and watching carefully your public statements, making sure everything is very tight and the lawsuits aren’t possible but also your private communications as well if your defamation laws are anything like they are in Canada, it means your private communications can be opened up. And lastly, taking time to strategise how you communicate is not the same thing as being silenced.My experience is if you’re sued you’re no longer able to write or speak at all and that is being silence, so to sort of plan ahead for a time when you have more power and when it will matter a great deal whether you can back up your statements whether they’re true or whether they’re inflammatory.
Jorn Bettin:
Thank you this is a wonderful. I would want to close from my perspective just emphasising that well we should worship those people who currently give themselves certain powers. I think what can shift the dynamic as well is simply to take a highly trans-transdisciplinary approach, because no one has a monopoly on understanding humans and human social systems. I don’t think I’ve learned much for example from the entire so-called discipline of psychology. I found it much more fascinating to dig deep into anthropology and other topics to learn about humans. What I can also recommend is to connect with people who live in other cultures. Locally this can be indigenous people as it’s already been mentioned, this is very powerful, but then also in other parts of the world. The cultural norms are different in different places and the whole conception of what a human is or what society is differs from place to place so it’s dangerous to assume that our own culture is the only perspective that exists. Now I’ll just let everyone else make some closing remarks for this panel.
Allison Hoffmann:
I had a thought about where to start with alternatives to ABA because I know that we have a lot of (I say we because I’m talking to the educators on the panel) classroom supports and finesses and ways that we’ll kind of make our way through to support neurodivergent children and students. Similarly, especially if we want allies that are BIPOC, we also need to show that we are anti-racist, it’s not enough to just be non-racist. Similarly it’s not enough to just not want ABA, but we have to be anti any of those practices in everything, and so the first alternative to ABA is just having this hawk eye of how am I a product of these implementations even if I’m not even aware of it, or how do I have a radical way of mentioning it when I see it. We talk about how ABA has fractured a lot of sense of selves and so it’s about rehumanising. That was just on a perseverating loop in my head, but I just wanted to shout that out. We are in the act of rehumanising, because when we’re talking about banning ABA, we’re talking about ending oppression. This is a harmful maladaptive reactionary practice that harms people for a very long time.
Sarah Selvaggi Hernandez:
I always come to my own experience in my own journey and I remember when I had my son who’s autistic, so freaking cute, and I had to make a choice, I had to make a choice if I was going to parent him in a way that was authentic to me and my way of being and what felt right for me especially as somebody who’s autistic and who doesn’t believe in hierarchies is so attuned to justice, and I had to make a decision if I was going to parent that way or the way that I was parented. In the moment that I looked at my child there was only one answer, that’s it. So I rejected the notion that when people are like oh it can take time in a system but at a person level, it is as simple as saying: I don’t agree I don’t consent to dehumanising another person, whatever I do, wherever I go, however I interact with this world, I claim my own integrity regardless of what the system says. I that’s possible and especially in gatherings like this. Thank you so much for having me and everybody who came. The energy is, love it. Thank you.
Terra Vance:
I just want to close with saying that I feel that panels like this are very important and I’m happy that you have put this together and appreciate it. So many important points here that I feel have strengthened my advocacy, so thank you to the panelists and I want to kind of trail what Sarah just said, as a parent. My daughter is turning five soon and she just had a developmental paediatrician. When I spoke to the doctor, I wanted to be in a separate room because I don’t want to pathologise my child and I was afraid that she would do that in front of my child and she did recommend four therapies when I said my child is happy the happiest child I’ve ever seen and thriving, very advanced in a lot of ways academically, but she wanted to put her in for therapies and I told her ABA is abusive, I am diametrically opposed to it, and she said did you have a bad experience? I said it’s not about an experience. Philosophically I’m opposed to modifying the natural innate intuitions and needs of a child, to work against their own interests to fit into a world that works against its own interests. She’s already fine. There’s no reason for me to change her behaviour and the paediatrician just said to me, ‘well we’ll do three therapies and we can escalate if that doesn’t work.’ Doesn’t work for what? I didn’t complain about my child. It is merely her diagnosis that made her believe that my child …, and this is a major research university this is University of Virginia, it is world renowned. , We have to change this and I agree with Sarah. We have to empower parents to not pathologise and dehumanise their children. That is where I will leave off. Thank you very much.
Jorn Bettin:
Thank you very much, Terra, very nicely said. Thanks again for everyone who’s spent the time here with us. I’m looking forward to further discussions of this type. This was the second panel. It’s one of many. We’re only just getting started with this campaign. We’re in this for the long haul. I’m sure eventually the world will change. Thank you. Take care.