This online panel discussion from 20 May 2021 is the first 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:
- Anonymous, artist and activist, New Zealand
- Kim Crawley, cybersecurity researcher, Hack The Box, Canada
- Laura Dilley, Associate Professor, Speech and Hearing Biosciences, Michigan State University, United States
- Pip Carroll, writer and creative producer, Australia
- Rory, independent researcher and advocate, New Zealand
Facilitator:
Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, New Zealand
Topics and questions explored
- Please describe what is ABA therapy and how is it implemented? What are the underlying assumptions about how to nurture good interpersonal relationships?
- More than 50% of autistic people identify as non-heterosexual or gender nonconforming based on current research on the subject. This means that until we ban ABA for autistic children, conversion therapy on LGBTQA+ children has not really been banned anywhere.
- If conversion therapies like ABA are banned, those who have thought those approaches are appropriate will want to know about alternative ways of raising and educating children. What approaches would you recommend?
- What do we mean by a comprehensive ban on all forms of conversion therapies? ABA for example has “applications” with a wide variety of “client groups” including those with intellectual and other disabilities, childhood onset “behavioural disorders”, and people in brain injury rehabilitation and dementia care.
Please use the form on this page to register for further panel discussions, and to submit any specific questions or topics you would like to see in future discussions. Any questions that we do not manage to cover in the online panels 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:
Thanks everyone for attending. Well let’s start perhaps with a quick round of introductions.
Anonymous:
I’m autistic and I was actually only diagnosed earlier this year and, like many people, have a history with the mental health system, both here and in the UK and I also have a son as well. He is not diagnosed as autistic, but you know it’s obviously something that I’m mindful of and I think, in part obviously, that’s why I feel quite strongly about ABA and having this discussion.
Laura Dilley:
Hi everyone, I’m Laura Dilley, I’m a professor at Michigan State University in the USA. I am a professor in speech language and hearing bioscience, also a neurodiversity advocate and someone with neurodivergent traits. Great to be here, thank you.
Rory:
Hi, my name’s Rory. I’m from New Zealand also. I am an online advocate and researcher for autism and ADHD. I am autistic and have ADHD, OCD, Dysgraphia and Dyscalculia, so, quite a lot of things, and I didn’t get ABA, but I got the other version of ABA which was just parenting ABA.
Kim Crawley:
Okay. I’m Kim Crawley, I work as a cyber security researcher and writer, I just started a new job with Hack The Box and I’m autistic and I’m ADHD, and because of my age and generation I never went through formal ABA, thank goodness, but I’ve been through the same sort of childhood and life trauma that the vast majority of autistic people have been through.
Jorn Bettin:
I’m based in New Zealand as well. I’m autistic, and for the last few years have been involved in activism around autistic people, in particular autistic people, how we are treated in the workplace, psychological safety, basically, is a core topic that I’ve come to see as of being of critical importance.
I don’t have any direct experience of ABA, I mean I stayed clear of that right from the start, and so it was really important for me to get the right kind of panelists involved here, some of whom may have closer experience with ABA.
We’ve prepared a list of questions that we’ll go through. I’ll read them out and then everyone has a chance to respond to these questions and we’ll try to get through, if we’re lucky we’ll get through to six questions which are the big questions and then there are further panels that we are coordinating in the coming weeks so this is only just the start of ongoing discussions about this topic because I think we can make further progress based on the excellent campaigning that has been done by the LGTBQ communities and where we’re now seeing globally and in multiple jurisdictions bans on conversion therapies. What we are talking about here is coming to more comprehensive bans acknowledging that it’s actually not just the target group that is in question but it’s the the kind of techniques that have been used and and the objectives of of these so-called therapies. So, let’s get started.
The first question is designed to give listeners and viewers an introduction to those topics:
Please describe what is ABA therapy and how is it implemented what are the underlying assumptions about how to nurture good interpersonal relationships?
Anyone want to start on that?
Kim Crawley:
I guess I will. ABA was actually the precursor to what later became gay conversion therapy and so it all has the same root, this awful evil man behaviourist I believe named Ivor Lovaas who believed that autistic people were not human and he even blatantly said that. He believed that, you know, we didn’t have thoughts or feelings and that’s the evil evil behaviourism. It’s all about, you’re just your behaviours, you don’t have thoughts, you don’t have feelings, you don’t have complex motivations for what you do, you don’t have intrinsic motivations you are just a combination of behaviours to be rewarded or punished and some of Lovaas’ punishments were especially brutal and violent, and some really violent ABA approaches are still practiced today, especially at the Judge Rotenberg Center with the constant electrocution which is incredibly disturbing. Modern ABA practitioners will often claim, “Oh well, ABA has changed”, but there are multiple problems with that. First of all, their organization still holds the Judge Rotenberg Center in high regard and Lovaas in high regard, and the other problem is, even if you’re rewarding someone for behaving a certain way, it causes the same problems. You don’t do things due to your own motivation, you need some sort of external source saying, do this do that don’t do this, and I’ve heard that with enough ABA abuse, you learn that your body doesn’t belong to you, your life doesn’t belong to you, you do not act without someone else telling you how to act, and it causes PTSD. It makes kids more vulnerable to sexual predators, because they don’t learn to assert themselves and they learn that their bodies don’t belong to them, and it’s just all completely disturbing, and like gay conversion and trans conversion therapy uses the same philosophy and techniques; just replace autistic behaviours with supposedly gay or transgender behaviours or gender non-conforming behaviours.
Jorn Bettin:
Excellent introduction. Anyone wanting to add to this introduction?
Anonymous:
That is a very good summary of ABA. I think that the tricky thing about it is that, now as you mentioned modern ABA practitioners, they do a lot of things to cover up what is essentially that same idea of trying to make an autistic person be and look like a non-autistic person so the core idea is that being autistic is incorrect and we need to change the way that we present ourselves otherwise we’re wrong or it means that we are upset or sad when in actual fact that is frequently not the case, and there’s a lot of renaming going on and using different labels on what is essentially the same principles.
Jorn Bettin:
Rory, I’m keen on your perspective. You mentioned that you’ve experienced ABA basically as part of the parenting and that you were exposed to. I think this might also be a useful perspective because it ties the whole sort of underlying motivation to parenting techniques.
Rory:
I think the main thing that Kim and Alice both touch on is the fact that it’s based on external behaviour, so there’s never any consideration to your autonomy or your personal feelings or your motivations for doing the things that you do. At the dinner table, the dinner table was basically peak ABA for me “Sit still, don’t use this fork, don’t talk, don’t talk too much, don’t watch tv, don’t do this”. I had a stepmother that just used to stare at me for the entire time waiting for me to make an error and then I’d be punished, so I ended up with eating issues surprisingly, which is another thing that’s super common. It basically teaches you that you should live for other people. That is the the biggest danger, that you don’t matter, and like most of us who found out later in life that we were autistic, you basically have a crisis of identity because you’re, like, wait who am I? I’ve been living for everyone else for so long, and then you realise that this is what’s happened. It’s heartbreaking hearing women in their 60s going “ I don’t know if I’ll actually ever know who I am”. It’s because they’ve been robbed of their agency. I think it’s completely inhumane no matter how positive it looks from the outside.
Jorn Bettin
I think that’s a very astute observation. Tell me if you disagree, but I think every autistic person intuitively knows that the ABA approach is fundamentally wrong and dehumanising, and I think this may be a reason why people like Iva Lovaas resorted to saying ‘oh well those people are not human’, because if we claim our humanity, that’s rejected.
Pip Carroll has joined. Pip, can you hear us? It would be great to hear a brief introduction from you.
Pip Carrol:
I sort of thought I’d join this meeting mostly as an observer because I’m kind of new to the world of autistic advocacy. I’m 45 years into the world of autistic experience, being self-diagnosed autistic myself after having an experience of going through a process of diagnosis with my own children and then that very familiar process of reflection. I think everyone does, when they look back and they realise, oh yes, well, my nephew’s autistic and all my parents are autistic and my grandparents were probably autistic and why is it such a surprise that I am. I’ve been in the last couple of years thinking about that in terms of contextualising my life and I think some of the things you were saying earlier, Rory, were really interesting because I do very much relate to that sense of patrolling of myself that has been happening for all of my life and never being the person that could participate in the prescribed way, and then over time developing obviously a very fractured sense of self and poor self-esteem, and then all the other associated habits and behaviors that go with that, trying to grapple with that fracture. And as you said, Jorn, it’s obviously apparent to anyone who understands themselves as being autistic, that the real issue is not, how can we modify ourselves to fit into the world. It’s like, how can the world learn or begin to understand what the experience of being us is like, and then understand how to make the world just a bit more comfortable and show some compassion, and just a sort of general understanding that our experience doesn’t need to be moderated doesn’t need to be improved, it’s actually fine just as it is. It’s enough, it doesn’t need to be improved or optimised.
Jorn Bettin:
I think that I would describe this as, ABA has this desire to achieve some sense of normality in the sense of standardising our behaviour. I really like this notion of hyper-normativity and that’s I think what our society has become and what’s very apparent to hypersensitive autistic people, and that sense of hyper-normality somehow escapes the so-called normal population.
Laura I’ve left you waiting, I’m keen to hear your perspective, I thought let’s hear all the others and you can sort of try and summarise you know what you’re hearing and let us know what it means from your perspective because you’re specialising in language, and perhaps explain where you’re coming from and how you relate to ABA.
Laura Dilley:
I first would like to to validate the opinions and and thoughts that have already been expressed. I think you all shared wonderful first-person perspective and I really can’t say anything better or I don’t in any way disagree with you. Here’s what I have to say which I’ll keep brief. Throughout history there have been dominant ways of thinking about things or doing things in societies including in science and I believe that ABA is a dinosaur. It is based on outdated ideas in science. The more innovative ways of thinking about the brain and cognition and behaviour and personhood and identity, these ways of thinking have not yet imbued our thinking at the societal discourse level about autism, and I think that that is a terrible disservice and a damaging state of affairs. I think we’re living through a time of change, we’re living through a time of reflection, I think we’re living through a time of a deep need for paradigm shift with respect to ABA. I look forward to the continuation of this discussion.
Jorn Bettin:
Excellent. We’ve reached a good point now to tackle the second question which is the most logical question now to ask given that we are seeing a growing number of bans on conversion therapy for other target groups, or in the ABA lingo or those would be client groups. The question is as follows: More than 50 percent of autistic people identify as non-heterosexual or non-gender conforming based on current research. This means that until we ban ABA for autistic children, conversion therapy on GLBTQ children has not really been banned anywhere. That’s an interesting line of thought. To us it’s very obvious again. I suspect outside the autistic community people are completely unaware of that connection. Anyone want to start?
Kim Crawley:
I’m in Toronto Canada and we have a local politician who is a lesbian and she recently announced we have banned conversion therapy in Ontario, and I said “f” you, you’ve banned gay conversion therapy, but ABA is the only provincially funded autism treatment in Ontario, and eventually she blocked me, like, okay we got we got gay people taken care of, “f” off, you don’t matter. And it just infuriated me so much. A lot of autistic people are are gay or transgender and so you’re not banning conversion therapy for those transgender and gay people, they’re still getting it because they’re autistic, and it’s just so disgusting, the lack of solidarity between the LGBTQ community and the autistic community when it comes to banning conversion therapy properly.
Laura Dilley:
I wonder if I could just jump in there and respond. I hear the distress. I myself am disgusted by the lack of awareness across different ally groups. I think that there is a very natural reaction when seeing the lack of awareness, to feel betrayed, to feel how could you not have caught up to speed in this issue. At the same time I personally feel, and based on a lot of research and a lot of evidence, that personal stories are extremely powerful, personal perspectives, the authenticity of speaking from your own life, from your own experiences, are very persuasive and help people understand, they are intrinsic to social learning The way forward will be for more influencers and different groups especially those that are slightly outside of the mainstream or have an advocacy opinion, agent goal, as well as in science policy, finding those influencers and sharing personal stories will be a great way forward.
Kim Crawley:
It’s not just a lack of awareness though, because I go to these people and say, ‘no conversion therapy in general has not been banned, it’s happening to autistic people and here’s the proof and here’s the guy who invented both kinds.’ And they’re like,’ Oh “f” you.’ So, that’s not a lack of awareness once we inform them and they still tell us to go “f” ourselves.
Anonymous:
I’ll just step in here as well and I want to say, the bizarre thing about it is, not only is it not banned, but it’s actively funded. The New Zealand government is currently funding, and it’s prescribed in autistic guidelines that ABA is the preferred method to use on children, so it’s not like gay conversion therapy that’s kind of like hidden away and you know shushed about and it’s like minority of people doing. it’s the widely accepted thing, and also it is still the same principles. It’s a very light disturbing setup that’s currently going on.
Jorn Bettin:
Alice, this is interesting to hear, can you clarify regarding the funding for ABA in New Zealand because I saw I think a few years back one of the ABA service providers ran a petition towards getting funding and I think that wasn’t successful. My understanding was that, yes, it’s prescribed sort of or it’s encouraged in the Autism Spectrum Disorder Guideline by the government, but I was thinking that actually at this point, I wasn’t sure what level of active funding from the government there is. Can you clarify? You’ve got a son, so what was this suggested to you and what did you learn?
Anonymous:
Well basically, I’ve been doing a bit of investigation. I’ve discovered that Autism New Zealand which is like the largest charity in New Zealand for autistic people or the autism community as they like to call, they are currently funded and the only people funded to provide early intervention, and what they’ve basically done is they’ve renamed ABA as a program called “Early Start”, i think. It’s one of those programs that’s based pretty much, you know they won’t say it, but you know all the principles and all the things that they’re doing, the videos that you look at, you can see that their goals are things like increasing eye contact increasing engagement. So yes, they are actively funded, and it’s super prescribed and the government website is saying that ABA is the preferred thing. So any parent, if you were to get your child diagnosed, Autism New Zealand is pretty much your first stop. They call themselves the one stop shop for autism, and the next course of action if you live in Auckland, that’s currently only in one location that they’re funded to do this, they want to roll it out nationwide. And they’re saying that they’re looking into it but I’m not sure who it is that’s looking into it, who’s making the decisions given that they’re funded for it, the Ministry of Education thinks that it’s necessary, and also the fact that they are connected with behavioural therapists.
Jorn Bettin:
I don’t really care that much how the techniques look that are being used. The challenge starts with the objectives, as you illustrate, things like eye to eye contact and other expected behaviours that are just part of the social cultural norms in our society that are incompatible with autistic neurology. It doesn’t really matter what techniques you use to try and bring those behaviours to the surface as long as you’re mandating them, you’re violating the autistic person.
Anonymous:
I agree. My conclusion is that it would be dangerous for me to even consider getting my son diagnosed at the moment because I don’t want him to be pushed into that system by the Ministry of Education.
Jorn Bettin:
My conclusion is that what we’re going to see is, with things like bands of ABA people are always going to sort of skirt around the edges trying to achieve exactly the same objectives, just by slightly different means. That’s the real challenge here.
Pip Carroll:I agree, Jorn. I’m just sort of thinking it through as an individual autistic individual but also as a parent and also three of my sisters have been through that process of having diagnosis for their children. I’m not sure that they’ve gone through ABA but they’ve certainly had early intervention programs which I’m sure include elements of that process. I was listening Laura. You were saying earlier, the storytelling component is really important from the sort of social and familial perspective because a parent always wants the best for their child, they want them to be able to succeed and be happy and eventually leave the nest. I suppose that’s kind of what we consider to be the purpose of the role of a parent in society, is to encourage independence and fulfilment for their child and achievement as well. I suppose an interesting thing to think about is, if not ABA, what what then? What do we offer parents and families of people with children who are obviously demonstrating all their signs as being autistic, what tools and messages will we provide them with or communicate to them, to let them know that this is a pathway that’s actually humane and is going to result in better better outcomes for their child in the long term. And I don’t know what that is. Maybe that’s something that’s worth discussing.
Jorn Bettin:
Thanks. You’ve perfectly introduced the next question:
What are alternative ways of raising and educating children?
I think we cannot divorce this question from what I said earlier about our hyper-normative society. we have diversity and inclusion initiatives in workplaces, but our society actually doesn’t appreciate diversity and we see this via this pathologisation of so many people and including, of course, the growing number of autistic people. We have to educate parents, we have to educate society. We need to work on society directly. That’s where I see solutions on the horizon. It’s broadening the scope of our educational system which is stuck in still stuck in the earth mentality of the early days of the industrial revolution on what I like to refer to as the factory model of society where we’re just machines or cogs in in the wheels. Humans are a bit more diverse than that. The first step is probably about educating parents and then also making parents realise that if they have autistic children, well, these children actually can teach their parents a lot about themselves if only the parents find ways of noticing their children, having the time for their children and finding ways of communicating with their children, letting their children guide them instead of this, well it’s the industrial metaphor again, instead of the assumption of parents that they’re the ones who have to tell children what they’re supposed to be in life.
Laura Dilley:
I might just jump in and say, as a communication professional, that is my scientific specialty, there are many different ways of communicating, non-verbally, with words, with some words, with unreliable words, with emotion which may be hard for different people to read, maybe the socially normative way of reading emotion is not going to apply in all cases, so I just feel that there there is a need for autistic advocates to share your authentic first-person experiences to help broader society socially learn. You are the experts, and as parents encounter the narratives around autistic people’s experiences, they will become more aware and educated about the strengths and the the challenges of being autistic, and the individual paths that people take and help find a healthy way for them to relate to their child, which then they can advocate with for with speech language professionals who are going to be incredible advocates, I can tell you.
Kim Crawley:
I think you’ve made some excellent points. I’d like to add that I got into a twitter fight recently with this inane autism mom. I think Neo KK neurodivergent rebel or someone else was talking about intrinsic motivation, and how ABA kills intrinsic motivation and how children obviously learn by intrinsic motivation and this autism mom “trademark” said, ‘But my dumb little kid, that’s too complex of a concept for my dumb little kid.’ As if as if intrinsic motivation was some sort of complex learning system and not something natural. I said to her, ‘Toddlers crawl around their home and they put everything in their mouths. That’s intrinsic motivation to learn, or if you as an adult all of a sudden become curious about a topic and you start searching about it on Google. That’s intrinsic motivation. This whole idea that you need some sort of complex magic tricks to get kids to learn with rewards and punishments and a complex methodology and stuff like that is just totally absurd, and they make it way more complicated than it really has to be. I think the only major difference between teaching an autistic child and an allistic child is, an autistic child may have sensory sensitivities that you need to help them with, an autistic child may not be verbal and you might need to offer them other forms of communication like the AAC sign language etc, but aside from that autistic kids learn just the same way as other kids, and they make it so complicated as if we’re a different species or something. It infuriates me.
Anonymous:
I’ll just jump in there as well and just say I 100 percent agree. I think basically if you do nothing that’s probably a better way to go than what has currently happened, like just leave them alone to start with. When you get diagnosed as an adult the first thing that the person who diagnosed me was like, go and read like stories of other autistic people, and there’s no cure or anything you need to do, obviously, you just need to learn how to live, and to do that you talk to other autistic people. We don’t need non-autistic people to stand as a barrier in these organisations between us, as if we can’t talk to each other. That is the problem, we can’t talk to each other because they are there, stopping us from talking to each other. That’s how it feels at the moment. It’s like there are so many stories, when you read a book that’s written by an autistic person about how to look after their child.
Jorn Bettin:
And it’s just letting us be autistic, letting children be autistic, accepting that being autistic is being human. That would be a start.
Rory:
I just want to also point out, they always use autism severity to try and justify ABA, but you can read, go online and read the words of non-speaking autistic advocates and they will all tell you that they didn’t like ABA and it didn’t help them and instead it destroyed their relationship with their parents or just made them not want to live. I think especially as well like the uniformity of our experience is, I’ve got tons in common with non-speaking autistic people. I read Naoki Higashida’s book The Reason I Jump, and learned more about myself from a 13 year old at the time non-speaking autistic child than anyone else in my life had ever told me at that point. It’s this idea that people are severe or intellectually disabled. I think in most cases that’s not true, they’re just not making the effort to communicate with them in the way that they need to, because they have apraxia or just some other neurological difference that means that they can’t control their movement and it’s been really heartbreaking seeing the non-speaking advocates come out and say hey like we’re here stop treating us like there’s nobody home.
Pip Carroll:
Rory, I had exactly the same experience reading that book. It changed everything for me. Reading that book was what made me understand that I was actually autistic, even though from an exterior perspective someone else would say that I was a highly functioning and extremely competent person who was able to achieve lots in society, but I felt exactly the same way as you. My interaction with the world and my sensory experience of understanding my place in the universe was extremely similar to this 13 year old non-verbal Japanese boy, and so, sort of joining that I guess, one therapy that I found was useful for my son, only in the sense that it made him feel good in himself and it helped him because he’s also you know if we’re talking about diagnosis he’s also diagnosed as ADHD and Dyspraxia, and so he’s very clumsy, has poor motor control fine motor control. We used an occupational therapist who used the Greenspan Floor-time method, which, when it comes down to it, is really just about regulation, about how well a person is regulating themselves and regulating their emotion, and that obviously depends on the sensory inputs that are happening around them, being able to respond to what your needs are and understanding what your needs are and modifying either your participation in that environment or the environment to suit you. The other thing that was essential to this approach was looking for the glint in the eye of the child and you know, the little twinkle in the eye is that when you when you have that and when you have that exchange with another human being or an animal or whatever, you know that you are in communion, you know that communication and exchange is ready to take place. It’s using fun and play and emotional ways of interacting rather than rigid behavioural ways of reacting to encourage that moment of connection, because that’s essentially fundamentally as humans, not just autistic humans, all humans are looking to achieve is that essence of being connected and in communion with one another.
Laura Dilley:
Just a brief comment to amplify Rory’s comments. The notion of overly simplistic categories of severity being used as justification or premise for mandating ABA therapy is invalid, scientifically outdated and damaging.
Jorn Bettin:
Thanks. We also should perhaps briefly discuss the reasons why some people seem to be desperate to find some kind of therapy, a lot of that may have to do with the way our education system and the school system works. When parents have children, their expectation is, ‘my child needs to succeed in school, needs to get an education.’ And that entire system is of course not designed for autistic people, and therefore some people sort of end up panicking if they notice that their child is not going to succeed by traditional measures in that kind of system. Real progress will have to involve a radical rethink of large parts of what we call education.
Anonymous:
I totally agree with that. In fact something that someone’s already said to me is that that would be a good motivation for me to look at getting my son diagnosed, but I would counter that, and I did counter that if he’s not going to fit in the school system, if he’s going to have to change and be something he’s not, then I’m not going to put him in that system, and I’ll homeschool him instead if it’s necessary, or I’ll find a school that actually works for him. I know there’s one in Naenae. I’ve heard os very good.
Rory:
This is a huge problem. School is literally the thing that taught me so many incorrect lessons about who I was. I had dyscalculia and dysgraphia, so I couldn’t write or do math, and that was basically everything that they assist you on when I going through school, and so I just got reinforced that I was stupid and I asked stupid questions, and just everything about it, the way that the autistic mind works is different to how a standard brain works. My mind works by relating things to other things that I already know. It’s just about forming connections between what are seemingly disparate fields, and I always got told off for veering off subject, that was one of the biggest things, and then now we’re starting to get systems theory is the emerging thing and science being like, hey we can’t look at all of these fields in isolation we actually have to look at the whole picture, and that’s where psychology is moving now as well, it’s like being, oh we focused way too much on the individual rather than finding what are the other causes, it can’t just be that people are getting more anxious and depressed like as anxious and depressed people, there’s got to be more underlying causes for what’s causing this. It’s really weird we teach so many things, but we don’t teach things like philosophy which teach you how to think or get you to analyse why something is a good or bad idea, or what you’re being taught, could this potentially be with bias. I basically got out of my education and then had to spend the next 10 years trying to actually learn what the truth was because everything that I’ve been taught was just white patriarchal … and I went to Auckland Boy’s Grammar which is just the most rigid horrible dated stuck in the 1920s, has core subjects that you have to do and basically there was no liberty in my education and all of the stuff that I was interested in wasn’t available as an academic subject. It was just painful.
Pip Carroll:
My experience of dealing with the education system in Australia has been pretty woefully uninspiring. We’ve chosen to mainstream educate our son. I suppose because it’s really hard to work against those systems, because you yourself have got to find money to work and it’s really difficult. It is part of the problem with the autistic mind, is it can’t it can’t separate one thing from another, it has to think about everything all at once and therefore it’s really difficult to try and fix one aspect of something without then knowing there’s always deficits in other areas, but the the level of understanding about autism and neurodiversity in children in the public education system in Australia is very very poor. We actually changed schools recently and there are some schools that are much better than others and we’ve been lucky to go to a new school that has a has a speech therapist working at the school, so, at least people who have some understanding of these presentations even mean and how they might affect a child’s learning, but I had the vice principal of the school writing a report that our son ‘didn’t didn’t enjoy writing, he doesn’t do much writing because it’s something he doesn’t enjoy’ and it’s like, well, you’ve completely failed to understand entirely who he is or what he’s able to do, because he just has difficulty holding the pencil or the pen, that’s the issue. He doesn’t not enjoy it. He’s keen to express himself, but they’re all just looking for the outcomes rather than the ideas or the information behind the person or inside the person.
Jorn Bettin:
I think what you mentioned there is an excellent example of how deeply or not deeply educators and teachers sometimes engage with children. This level of superficiality highlights where the real problem is. Why do we all have to go through this highly standardised education system? People talk about diversity on paper, organisations are happy to say yeah we need diversity, it is essential for progressing in all kinds of fields, and yet in practice we don’t see it, there is this cultural bias against it, and this is dividing up the world into disciplines is no longer quite appropriate. The internet certainly doesn’t work that way, neither do humans, neither individually nor collectively.
The next question could be a good continuation here:
What do we mean by a comprehensive ban on all forms of conversion therapies?
“ABA for example has applications with a wide variety of so-called client groups including those with intellectual and other disabilities child and onset behavioural disorders and brain injury rehabilitation and dementia care and of course you can add autism to that list so this description”.
This description that I just read comes straight from a university webpage on ABA, so that’s the official scope of ABA. I would like to discuss what are we really asking for with a ban, does it stop with autistic people or how how far does it need to go?
Anonymous:
I’ve got a sort of a talking point that kind of expands on that. What I’m noticing is that all of these organisations that are involved whether it’s a school, Autism New Zealand, Ministry of Education, they all need to create measurables basically, so they need a goal and they need to be able to measure that and that proves that everything’s working. That kind of goes across all of these groups. If you’ve got someone who’s intellectually disabled, the measurable is going to be something like ‘they are having fun and smiling more’, that’s literally what it is, I’ve worked in one of these organisations, that’s what they measure stuff on. That shouldn’t be what they’re measuring on, and I think that if we break that down and really stop that from happening, stop measuring based on what things appear to be to people who aren’t involved and maybe talk to the actual people and say ‘how are things for you, are they improving or are they not?’, then we might go some way to actually stop it from happening, but the current system of everything being based on professionals or experts who are experts in autism but not actually autistic and experts, and every other thing that they can come up with that will make money off of us basically.
Rory:
I think banning ABA on a general level it’s just presuming that people have competence. That is the number one thing. With all of these groups that you’ve mentioned, there’s an underlying definition in society that these people don’t have agency and they can’t think for themselves so we have to do it for them and that’s the underlying principle. With intellectually disabled people they usually know what they want to do. I’ve talked to tons. They know what they want and then it’s because it’s not something that .. for sure, for problematic stuff where they are injuring themselves or others, that is something that you can work with them on, but you need to find out the reasons that they’re doing it first which is something that’s never asked. They just start trying to fix the behaviour without finding out the motivation for the behaviour. This is like in ABA research last year they they were trying to get a child used to their sensory sensitivities with sound, which is one that’s super common across all autistic people is that we have a higher sensitivity to sound, and they did this by locking him in a like three by three room and just playing ridiculously loud crying baby noises and stuff that is known to actually upset people, and then that just reminded me of like the clockwork orange movie. That’s literally what they were doing to them. And apparently that’s ethical, that passes university ethics committees. We need to start respecting that people are different. That is the underlying thing, some people are different, they don’t conform to normal standards and that’s okay. The society always preaches individualism but the second that individualism shows up they’re like nope, be like a collective in this one way.
Jorn:
Yes, it’s about social power, it’s about control, the desire to manage people. The conclusion that I’m drawing is, society has become dehumanising. Functioning in standardised ways is appreciated more than the ability to develop trusted relationships, and people have become time poor. When I write about society I write about this cult of busyness that we’ve created and this means people don’t feel they have time to attend to children, they don’t have time to attend to disabled people, they don’t have time to spend time with old people who may require care and and just human contact, and so we’re trying to commoditise everything. I think we as autistic people we are in an excellent position at holding up a mirror to society and just throwing up these questions. We don’t need to pretend to have all the answers. I think I’ve got a number of good ideas, but the first step to collectively changing something in society is to recognise that we’ve got severe problems at a social level and not at an individual level.
Laura Dilley:
I think that was stated wonderfully, Jorn. The burden is on society now, to change to accommodate.
Jorn Bettin:
And my conclusion therefore is that there is no use case for ABA or similar therapies, this desire to control and manage people has gone far way too far, and we need to peddle back.
Kim Crawley:
Abolish capitalism.
Jorn Bettin:
I mean this is another interesting big discussion. In the autistic community as you know we’re having these discussions all the time. If you do polls amongst autistic people of course our outlook on society is very different from the norm, and I think we’ve long concluded that the current economic ideology is completely inappropriate but, and this is why we’re getting that much pushback, right? Because there are very powerful vested financial interests that absolutely are against these strong powerful voices that can even you know logically reason why so many things are broken in society. The evidence is overwhelming. The way our company organises, and I’m connected with many people who are involved in organisations that operate very differently from the mainstream paradigm, and this is an emerging trend which from the perspective of mainstream society is probably highly concerning. And you can see this here even with Covid and the pandemic, initially people noticed that oh yeah well actually all this busyness maybe we don’t need all of that, but one year later and business interests and the politicians are all about getting back to so-called normal. Anyone else have comments on the previous question so how far does a band need to go? I guess I understand correctly we’re saying we don’t want these techniques to apply be applied to anyone, right? No just the autistic children.
Rory:
Honest, the international federation for dog trainers, they don’t allow behavioural therapy, they’re like, you need to respect the dog, we’ve been doing so many things wrong, this is inhumane, and that same level of care is still not applied to people. If you wouldn’t do it to a dog, why are you doing it to people?
Laura Dilley:
That is remarkable. Do you have a link that you could share?
Rory:
I’ll drop it in the chat window.
Laura Dilley:
Thank you for that.
Jorn Bettin:
We’ve run out of time but I think we’ve covered quite a bit of ground. Thank you very much for your time. We’re coordinating further panels so if you have time available to participate in another panel please let me know. We just need to find ways to continue our campaigns. Autistic perseverance is our one of our biggest strengths, let’s make as much progress as we can. It would be nice to see if we can get ABA banned in New Zealand, and then we can focus our attention on preventing the same techniques from popping up under other names. Thank you. Take care.