This online panel discussion from 11 June 2021 is the fourth in a series of discussions within the autistic community to progress towards a ban of all forms of autistic conversion therapies (including ABA) – in Aotearoa New Zealand and beyond.
Panellists:
- Anonymous, artist and activist, Aotearoa New Zealand
- Jasper Poole, Founder, Neurodiversity Club, University of Auckland
- Naphaphol Suwanacheep, Founder of NeurodiverThai and Autistic Post, Thailand
Facilitator:
Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, Aotearoa New Zealand
Topics and questions explored
- Challenges faced by autistic people in Thailand.
- The motivation for founding NeurodiverThai.
- Creating alliances to stop the use of ABA in Thailand both now and in the future.
- How do we campaign against ABA in countries that so far have not had no one who felt safe to openly expose the dark side of ABA?
- As a musician and an artist, I would like to know how to become more involved.
Naphaphol Suwanacheep, the founder of NeurodiverThai and Autistic Post, is the first autistic activist in Thailand to openly speak up against the dark side of ABA. He would like to see all forms of conversion therapies including ABA to be banned in Thailand.
In this panel discussion Naphaphol explains that many autistic children in Thailand are subjected to ABA without consent, yet in contrast to North America, Europe, and Oceania, to date there has been no publicly visible autistic rights activism in Thailand.
In Thailand the laws to protect the rights of disabled people are inadequate, and the penalties for bullying and discrimination against disabled people are too light.
Beyond the severe harm and trauma caused by ABA, autistic children in Thailand are regularly bullied at school. Naphaphol points out the harm caused by the use of Person First Language and the stigma associated with pathologising functioning labels, which only encourages the teasing and bullying. The Autistic Post website also reports on a recent incident where a high profile politician used ableist language.
Any questions from viewers that we did not manage to cover in this online panel will inform our online advocacy work on blogs, social media, etc.
As Kieran Rose from the UK points out, the autistic community can be understood as a global neuro-culture that transcends geographic boundaries. Autistic people intuitively understand each other across language and culture barriers due to shared experiences.
The following related talk by Jax Bayne (US) and Rakshita Shekhar (India) highlights the links between autistic neurorology, globalised materialistic [industrialised] cultures, and trauma, building on the observation that autistic people act as the cultural immune system within societies.
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 fourth panel discussion in this series towards a ban on all forms of conversion therapies that started around about a month ago. Today we have an interesting group of panellists from New Zealand and we’ve got Naphaphol from Thailand, which is really really interesting because so far we haven’t had any panellists yet from Asia. Let’s start with a quick introduction. My name is Jorn. I’m associated with the Autistic Collaboration Trust, which is all about all forms of collaboration within the autistic community. We run a whole number of projects and initiatives related to the autistic rights movement and more broadly we support the neurodiversity movement.
Jasper:
Hello my name’s Jasper. I’m a third year student at the University of Auckland. I’m a little bit less involved or at least haven’t been as involved with some of you guys here. Right now what I’m doing is running the University of Auckland Neurodiversity Club which is the first neurodiversity club that’s been set up at any university in New Zealand. Recently I’ve become quite passionate about banning ABA therapy. It’s an issue that affects a lot of people all around the world and a lot of people in the autism and neurodiverse community and you know, so just creating some awareness around it and being able to shared light on that issue is pretty vital. That’s all.
Naphaphol Suwanacheep:
My name is Naphaphol, from Thailand.
Anonymous:
I’m Alice Richardson. I’m based in New Zealand and I am autistic, but I was only diagnosed earlier this year and I’ve suspected it for a very long time, but really just towards the end of last year kind of set in motion getting a diagnosis, and I guess that my the reason I’m interested in all this and or found out about it even was that I was looking into what’s available in terms of help for autistic people in New Zealand, and also I have a child, and so that obviously raises some questions around whether that would be something that’s going to affect him in the future. In my search for finding out what is available, I found out that there is very little available that would be helpful for people, and most of what’s available is damaging and it’s based in ABA, so I was basically talking about that on twitter quite a bit and that’s how Jorn found me and then I got involved in these panels, so that’s why I’m here.
Jorn Bettin:
Well thank you. Perhaps we can dive straight into some of the questions that we have. I would really like to start off today by asking Naphaphol about the challenges faced by autistic people in Thailand, and then we can start to compare notes as to how that compares to the situation here in New Zealand and what we are more familiar with.
Naphaphol Suwanacheep:
Yes your question is about the problems of autistic people in Thailand. One problem is that people still use ”Autistic” as hate speech. It is so bad because it happened with a well known politician last January. The next problem is most that Thai people still think of autism as an illness and think that we must be cured. No one knows the neurodiversity symbol or about the problems with functioning levels, person-first language, and ABA. A really big problem in my country is being bullied in school. I was bullied by my classmates. And the last problem is, in Thailand there is no organisation that represents autistic people. Okay that’s it.
Jorn Bettin:
Just to give us an idea, how common is ABA in Thailand? Is this something that many autistic children are exposed to, or is this something that is only used in some cases to “treat” autistic children?
Naphaphol Suwanacheep:
I don’t know how to describe it, but I was forced to make eye contact by my parents, but I think it’s bad for my mind. I haven’t seen ABA from within, but I won’t ever want to see it from within.
Jorn Bettin:
Alice, do you perhaps want to comment or try to compare to New Zealand?
Anonymous:
Yes, I mean it’s the same really isn’t it, a very similar situation here and you know autistic kids are bullied as well in school, I know I certainly was throughout my entire schooling, pretty much until I got to university and then once I was in the workplace, it was bullying again, so yes it’s kind of like ABA in the wild isn’t it, where you’re kind of conditioned by society. I think here it’s not widely funded by the government at the moment, although they are trying to make it funded widely by the government, and I still think unfortunately it is also seen as an illness that needs to be cured or treated and that’s reflected, I think we’re going to talk about it perhaps later, but it’s definitely reflected in the focus of the research that’s happening here, which is all around treatment, so ABA type treatments or cures or you know, gene therapy.
Jorn Bettin:
Yes, I think in terms of the research focus, it’s perhaps worthwhile for the general audience to point out where those research agendas are coming from and where the funding for this type of research comes from, because that’s where we see the the connections to those with a financial interest in these types of harmful and toxic so-called therapies. Alice, did you want to comment because I know that you’ve investigated this here in New Zealand?
Anonymous:
I did a quick search actually again today just to see because, you know, in passing I’ve obviously come across that Victoria University is heavily involved in ABA research and providing ABA at the same time.
You look at every university, you know the big ones, University of Auckland, they’re looking at targeted treatments and better management. They’ve published something in 2020 about a supplement, actually zinc. They propose that because in mice they were able to show that zink given to the mothers showed less grooming, meaning that therefore it’s a candidate for curing autism. So that’s where Auckland University is at. Victoria University, they’re looking at improving engagement communication imitation in young children with autism, so that’s ABA.
Otago University, they’re looking more at big data, so basically trying to identify autistic people, and the problem that is, basically it’s trying to point to autism itself as being the causes of our problems, so they talk about comorbid issues like anxiety and things being caused by the autism and so, if we therefore cure the autism, those things will go away. Not the case as we know as autistic people. The reason that we’re anxious and struggle is because we’re so othered. That’s what’s happening there.
And then Canterbury University, we’ve got some solving severe sleep problems as their latest thing, and children with autism spectrum disorder with ABA of course.
Jorn Bettin:
Yes, this just illustrates the whole pathologising framing that dominates these agendas. None of these agendas is in any form compatible with the neurodiversity paradigm and with the neurological diversity of humans.
Anonymous:
It’s worth noting as well that they refer to ADHD as a behaviour problem. That’s not what it is. It’s not the way that people with ADHD would see it, and it’s not a way to help people. Yes, the whole structure of research and focus in New Zealand is very much that we need to get rid of it and change it.
Jorn Bettin:
Yes, we’ve discussed at length, in particular in the second panel discussion that we had in this series, the alternative ways of raising healthy and thriving autistic children. The challenge that we face is, the vast majority of people of course is not autistic and therefore they can easily be led to believe that some other group of people that on the surface doesn’t seem to behave in the culturally well adjusted ways is somehow not normal or undesirable, and then very quickly we get to the stage of pathologisation.
It’s important to note that the research going on here in New Zealand is based on outdated behaviourist models of what humans are, and these behaviourist approaches, they no longer reflect our scientific understanding of what human diversity is about. In other places, in other universities all over the world, there is increasing research that demonstrates that neurodiversity is simply the diversity of humans, and so the social model of disability is something that needs to become much more part of our education system. Teachers need to be aware of this, parents need to be aware of this, that when people are disabled it’s usually the environment that is disabling people who for one reason or another don’t conform to all the social expectation of their surrounding culture.
What I also always like to point out is that the pathologising sort of paradigm that dominates that has led to pathologising diagnoses such as autism or ADHD and so forth, this is very much a product of the western industrialised world view, and in a different culture some of these behaviours may not even be seen to be abnormal, but as we’re hearing that doesn’t mean that autistic people aren’t marginalised in other cultures.
So just coming back to the situation they’re in in Thailand. Maybe Naphaphol, you can tell us a bit more about the websites that you’ve created and the organisation, because I think you are publishing information about the local situation in Thailand, and this may be a valuable resource for people like ourselves, for autistic activists all over the world, to highlight what’s going on in your country. You have founded NeurodiverThai. What was the motivation there, and what do you hope to achieve with this organisation, and how can we support you in what you’re doing?
Naphaphol Suwanacheep:
Okay, the first is no one is talking about the meaning of what the law says about autistic people, and to do that from an autistic perspective. The second one is that Thailand has no friendly media for autistic people, and also doesn’t have an autistic rights movement. The last one is that no one is talking about the dark side of ABA. Okay. This is my motivation for founding my website.
Jorn Bettin:
Have you already established contacts to local journalists or what’s the situation like in terms of building up local allies? Do you have hopes of finding allies locally?
Naphaphol Suwanacheep:
Okay if I talk about the rights for being anti-ABA in Thailand, my solution for stopping ABA in Thailand is to work with the LGBT community in Thailand and to invite autistic people inside the LGBT movement to join our movement. But anyway, in the future I have a plan for my autistic organisation for letting the government ban ABA therapy and to end anti-autistic discrimination law. Okay that’s it from me.
Jorn Bettin:
I’m just wondering what we can do as the wider autistic community and neurodiversity movement, to assist in providing educational material or further visibility in countries that are not yet familiar with the neurodiversity paradigm.
Just from the top of my head, what I can think of is, the western media in many ways dominate the world, so I think whenever the topic of neurodiversity comes up in the big western media outlets, and whenever we have a chance to contribute there, it may be worthwhile pointing out our knowledge about similar problems in non-western countries, to point out that these problems exist there in the same way, and possibly even in a more severe way,
We can alert people who are watching some of these media reports across the globe, alert them to the fact that this is not just a western problem, that actually the autistic community is watching over what’s going on, no matter where these things are happening.
Anonymous
I think that we’re very linked up, well probably not as linked up as we could be, but very linked up across the world in terms of being able to use social media now. We have got quite close ties with different countries.
I think in New Zealand we probably need to work on similar things as well, and really just build up the pro neurodiversity stuff and availability of that information here, so that it kind of just washes aside all this other negative stuff that’s the first thing that you find. In New Zealand, if you search for autism, which is one of the first things you’re gonna do when you’re recently diagnosed or thinking about maybe you are autistic, the things that come at you aren’t the things that are going to be helpful.
So maybe, if we do that here, and then it’s also happening in different parts of the world, then we can refer people to new ways of thinking about autism. I know that it took me for example quite a while to find out about Reframing Autism in Australia, which is quite a good organization for people who are worried perhaps about their children being diagnosed, it literally reframes that worry into something that is helpful. I think if we have those sorts of resources based in New Zealand, and obviously based in Thailand, then we can be like ‘look this is what we’re doing here and it’s working in this other country as well’.
Jorn Bettin:
This is where I see the Autistic Collaboration Trust being able to play a role because we are set up, not only as a national body but as a transnational international organisation, and our objective is to nurture collaboration across the autistic community internationally. You can already see it. There’s a growing number of initiatives or projects that we are coordinating or involved in, and also a list of organisations that are run by autistic people for autistic people, or neurodiversity friendly organisations that are run by neurodivergent people more generally.
We are starting to maintain an index of these things. We are maintaining an index of all the initiatives towards bans of conversion therapy. I think the organisations and websites that Naphaphol has created in in Thailand can become part of this index, and we can start to talk and write about what we hear from places that don’t yet occupy much of the mind space in the international autistic community.
I’m also wondering, Naphaphol, whether you’ve already gotten in touch with Neuroclastic, this collective of autistic writers that was founded by Terra Vance. Have you been in touch with Terra?
Naphaphol Suwanacheep:
What about Neuroclastic?
Jorn Bettin
I was asking whether you’ve heard of an organisation called Neuroclastic.com. What I’m suggesting here is, I know Terra Vance very well and I think she would welcome someone like you if you wanted to write articles on a platform about the situation in Thailand, to basically provide the international autistic community with insights from the Thai perspective. You can include links to your websites for further information, and then we can start to systematically learn more what’s going on in places like Thailand and we can initiate online conversations.
I mean we are good at communicating and collaborating online, right? This is the world of autistic people. Let’s start to make good use of that, and once we have access to local information, then we can assist you, and we’ll work with you as I outlined. Whenever we talk to say big western media outlets, we can then also talk with more knowledge about what’s going on in Thailand and other places.
Naphaphol Suwanacheep:
Yes, I like to write articles because it’s my habit. I want to make everyone know what’s happening in Thailand about autistic people.
Jorn Bettin:
Very good. Jasper, do you have any ideas based on the discussion so far?
Jasper Poole:
Well I guess I kind of do at the moment. Basically at this point what we’re dealing with is a situation where ABA therapy is the therapeutic consensus around how to treat autistic people. It was recommended in 2009 by a Ministry of Health Report and it’s basically been very mainstream since, and you have the University of Auckland actively advertising, how they promote it, so yeah I think that was alluded to before, I’ve tried going to them and I’ve complained through AUSA (Auckland University Student’s Association) advocacy and I’m probably going to have a meeting with the people that are responsible for conducting that ABA training program at the University of Auckland.
What I’m basically thinking is going to happen is, they’re almost certainly going to refuse my complaint and my idea that ABA therapy should be banned, because they already torture rats so they’re not going to stop anytime soon with the horrific other stuff that they’re doing, but basically it’s the first step towards putting things on the public consciousness, that’s just one small thing.
I’m thinking that this is something that is going to take years and years and years to accomplish, because we’re just dismantling an entire consensus that has been around, not only in how to treat autistic people but it’s been around in psychology for a long as time, so that’s something that’s basically going to take ages and it’s not going to be an easy thing, but I would say in general, approaching people and disability organisations is a good way to do it.
Honestly, if you go to disability organisations, and they actually are made up with people from those communities, as well as LGBT groups, that can be a pretty effective mode of communication in order to get these issues across. If you go to mainstream autistic advocacy organisations, like Autism New Zealand so to speak, they’ll usually give you some pretty wishy-washy answer and won’t really offer much help or offer any kinds of solutions whatsoever, that’s the kind of stuff that they’ve been dealing with, they have a lot of parents that actively support them, they don’t want to upset the balance or anything, they don’t appear to say anything too out of line, so I’d say that’s the best kind of thing we can go for.
And hopefully, year after year as this kind of issue gets exposed more and more, then there’s going to be a perhaps you know a growing idea that ABA therapy is going to be banned, but it’s not going to be easy, and something I’ve basically learned is that it’s very hard to mobilise neurodiverse people in general.
It’s something that if you try to go to any university or any place and have the aim of doing it it’s going to be difficult because you know, we’re all dealing with so many stuff, a lot of us don’t even know what ABA therapy is, but then we’ve also got issues that a lot of us are dealing with, like say depression, anxiety, you know stuff in our own lives as well, they’re impacting us quite a bit, so you know it’s hard to get out there and participate in these kinds of movements and overall it’s just going to be a very hard thing to do, but I’m hoping that through consulting different groups, through creating a wider network, there can eventually be a moment where the moment just spurs on the scene and more people become aware of this issue.
Anonymous:
Can I just comment on there and say that I can see in your face and I can feel it, that it’s so draining and sad and that it seems like it’s just impossible and will be a really really long fight, but the other day Jorn actually said something to me, and it changed the way that I’ve been thinking about it, and maybe we focus less on talking to these assholes are doing this to people and, he didn’t use those words by the way, and we just do the good stuff so we create more content and we’re louder and we do more.
You know I’m willing to go down and protest and make myself look stupid because I’ve got nothing to lose, I’m older, no one employs me, I employ myself, they can’t get me, they can’t do anything to me. I will, if it is just me by myself, I will sit there and make myself look silly, just to get that message across, you know. There are people that will do that and they’ll do that for you because we believe that you shouldn’t have been treated the way that you were treated, you’re younger than me and it’s horrible that that’s happened to you, and I think that’s something that I’m ready to stop it, you know, I don’t want it to drag on for another year. I certainly don’t want it to drag on for another 10 years.
Jasper Poole:
I do have some thoughts and that it’s hard to get out a very positive message, but you can do it, it just takes a lot of communication with people. I know I’m not so much communicating with the people inside the faculty that conducts the training for ABA therapy, not because I want to but because it’s the recommended route that a AUSA advocacy laid out for me, which is the student union, after that’s been done, and after my complaint inevitably goes nowhere, I’m thinking that I’ll be able to gain one thing which is that it’s possible that with my feedback they’ll put in a disclaimer on their training course about the possible side effects of ABA therapy, the same way they do for other psych courses, and then after that what I’m going to do is approach different disability organisations, because that’s when the whole campaigning stuff is going to begin, but that’s basically what I see happening at the moment.
Anonymous:
And those are all like really important things to do, because even if one parent sees that and goes ‘okay this is all I’ve been told about maybe there’s something else that I can do instead’ and then that stops their child from going into it, you know.
Jorn Bettin:
We have to realise what the autism industry has been doing is a divide and conquer technique, and because we are a fairly small minority, this divide and conquer technique has worked out pretty well for them in the past, but my sense is that activism from the autistic community is starting to change this, because wherever the autism industry operates online, the activists are immediately on their back, especially if we consistently provide access to high quality educational material from the autistic community, which exists in fantastic quality these days.
We need to promote that more, talk more about it, all the good stuff that already exists that the autistic community has pulled together over decades, and all this wisdom that exists out there alongside the new research that is coming out, which is increasingly being done by autistic and otherwise neurodivergent researchers, which completely blows out of the water the behaviourist pseudoscience that that underpins ABA.
I think this needs to be reiterated: ABA and other types of conversion therapy are not based on any solid scientific principles. This is the worst kind of pseudoscience that the social sciences have managed to come up with. The very fact that this stuff is still being taught and that there is still related research going on in New Zealand universities, well, that tells us something about the commercialisation of our education system, of the lack of ethics and the variable quality of research standards in some of those institutions. That is something that the wider public needs to understand, who may not be familiar with the inside workings of academia. Not everything that has got written “evidence based” on the label is actually scientific.
Anonymous:
On that vein like one of the justifications that they always bring up for the Early Start Denver model which is the one that I go on a lot about because it’s the one that is currently the main one in New Zealand or the most talked about, although they’re now calling it ‘Modified Early Start Denver model’ to confuse people even more, but basically the justification that that works is that it works less bad than the one that doesn’t work at all or is traumatising, but that’s literally the paper that they reference; is less traumatising than this other traumatising therapy, neither of them help, but you know as long as you’re doing something.
Jorn Bettin:
I refer back to the material that we’ve pulled together in the second panel discussion about all the alternative approaches to raising healthy thriving children, and by the way not only healthy thriving autistic children but just any children, by taking a low arousal approach, by personalising education around the intrinsic motivations of children. This is so important, and it just needs to be repeated again and again, because we all know how to raise healthy children. There’s no reason whatsoever to continue with with ABA.
Anonymous:
Yes I think on that point as well, and there’s definitely some amazing skills that are around, and I think that they are helpful for all children and they are aimed at all children as well. I’m pretty sure there’s a Waldorf school that’s local to me, and it’s just a different kind of learning than is like the kind of classical way of learning that is accepted everywhere, but you know all children have problems with conforming in that way, it’s not just autistic children. So why not just make it nicer for all children and autistic children at the same time.
Jorn Bettin:
Naphaphol, do you have further thoughts or things that you would like to tell us about your experiences?
Naphaphol Suwanacheep:
My experience? I don’t know.
Jorn Bettin:
We were just talking about these alternative education approaches, much more personalised education around the intrinsic motivations of autistic children. Is this something that is happening in Thailand at all? If not, do you see an avenue as to how that could be introduced?
Naphaphol Suwanacheep:
How the situation is for autistic people in Thailand? Okay, I think I have best experience in my school when when I was six to fifteen, because someone saw me as a stranger. But someone bullied me. I think school must be more friendly to us.
Jorn Bettin:
Anyone has further ideas here about ways in which we can assist campaigns against ABA in countries that so far have not had people who felt safe to openly expose the dark side of ABA? I think the situation as we see it in Thailand probably exists in a similar way in other countries. I’ve had conversations with people in Singapore and what I heard was that these societies are very conformist and autistic people there seem to feel even less safe than people in our societies to openly identify as autistic. I guess I’m just trying to broaden the question here, opening it up systematically: What else can we do to bring our campaigns against ABA into countries that currently may not have anyone who’s speaking out like Naphaphol now in Thailand.
Naphaphol Suwanacheep:
I think I have a plan to do many things. I have tried to highlight the dark side of ABA in Thailand last year, but it was not successful for me at that time. This is my lesson to make content for my website. Okay thank you.
Anonymous:
Yes, I think one of the things that we’ve talked about before maybe is that New Zealand looks like it might be closer to being able to ban ABA, I’m not sure, I don’t know, I would hope so. I think the other possible country would be the U.K. that might be getting close because there’s quite a lot of research against it, there’s quite a strong organization against it, also maybe Australia, and maybe once we’ve got one country that gets rid of it, then it might be a domino effect then to have the ability to put pressure on other countries, especially if it’s coming from government, because ultimately it’s got to be the government that’s going to have to ban it, they’ve obviously got much more powerful links to different countries and than we do, and if they’re saying it’s a human rights issue, that may be the fastest way.
Jorn Bettin
That’s a good reminder. Did you watch the recording that Tania provided?
Anonymous:
Yes, I watched the first half of it and it’s very interesting, definitely worth watching.
Jorn Bettin:
This is all about the communication rights of disabled people and things that already are identified as human rights. The challenges relate to the enforcement of these communication rights in the various jurisdictions. This is I think where in New Zealand, so I haven’t done this yet, but maybe something that we can collaborate on is to look into the implementation or the conformance with that type of international agreement; how far do we actually adhere to this in New Zealand?
Anonymous:
Yes, absolutely I mean I got as far as looking at, trying to figure out who it is that’s actually monitoring it and I think I’ve come across one of the organizations before, but couldn’t figure out what it is they actually do for autistic people. As far as I could tell, it was very much focused on physical disability, so I feel like we’re perhaps not even on the radar there, which is an oversight and I think as well that’s something worth noting. A lot of people with autism or a lot of autistic people rather don’t know whether or not that counts as a disability, and I notice that when people are trying to figure out whether we’re entitled to get the Covid vaccine early in the earlier rollout, people don’t know because nobody really talks about it clearly as being a disability here, so I think that that might be something that needs to be looked into and firmed up to reiterate that is in fact a disability.
Jorn Bettin:
And this access to appropriate communication tools, because let’s restate this for the general audience: autistic people, even most non-speaking autistic people, all of them are able of some form of communication and with the right supports these people can articulate their needs very very well, and I think this is not known by the the wider public. I’m really keen on having another panel discussion interactively with Tanya and where she can maybe even bring along further people who have expertise with these international agreements.
Jasper Poole:
What’s Tania’s last name?
Jorn Bettin It’s Melnyczuk. This is not someone here in New Zealand.
Anonymous:
She’s based in South Africa isn’t she?
Jorn Bettin:
Yes. She’s got a lot of expertise around this, and it’s just a great way of sharing this knowledge internationally and then more local autistic communities making good use of that and dissecting the local adoption of or enforcement of these human rights.
Jasper Poole.
There is another person called Tania who I also know, who helps run a Labour lac and he’s quite passionate about autism issues who also might be good to contact.
Anonymous:
Yes, definitely that sounds like a good idea. I think it would definitely need support from Labour or maybe Greens. I feel like they would be interested in helping us as well.
Jasper Poole:
It’s going to take a while. I’m already a member of Labour and I basically think it’s possible to get something like this into the Greens policy manifesto even, but when it comes to Labour, that’s basically a more longer game. I’ve already tried submitting policies and we’ll see how that goes. I have a chance to do it again next year.
Anonymous:
Cool.
Jorn:
I mean the human rights issue or topic is also an excellent angle to clamp down on some of these research agendas and to come up with very very different research agendas.
Anonymous:
Yes. The ministry of education is one of the targets of these organisations when they’re going for funding for these ABA rollouts. Maybe it’s worth writing something, creating some sort of report or a series of guidelines that would actually be useful and helpful enough from the perspective and backed up by autistic people. At the moment they’re obviously all led by non-autistic people. These guidelines that have been written and decided for us and for our children and future generations.
Jorn Bettin:
I think the research agenda in this case really needs to be driven by the autistic community. The ethical standards like are currently at ground zero.
Anonymous:
Yes.
Jorn Bettin
Research related to autistic people needs to be approved by autistic people. Otherwise the whole premise doesn’t really work. We’re getting close to the hour maybe we conclude with something less frustrating than autism research. There is this question of how can musicians and artists who would like to assist us, how can they become involved and contribute to this initiative here? Obviously the first thing that comes to mind would be all these wonderful autistic artists and musicians out there, I think we all know a few and a few that are openly autistic, but I suspect that there are many more who are currently not openly autistic, so I think what I would like to do here is just to call out to artists of whatever type, think about the global autistic community and the needs of marginalised autistic people, and if you know that you’re artistic, think about ways in which you can openly talk about being autistic. Yes, this may take some courage for some people but we can say with confidence that the entire autistic global community will stand behind you.
Anonymous
Yes, I think that’s the thing. People try and make us feel ashamed of being autistic, and there’s nothing to be ashamed about, and it’s good and it’s cool, and I hear that the young people these days think it’s quite cool to be autistic, so there you go. But I understand there is a lot of stigma around as well unfortunately, but that is what drives these industries. That’s whyI feel it’s important for me to tell people that I’m autistic, because I don’t want them to think that I’m ashamed, it’s not.
Jorn Bettin:
The thing is society needs to realise that autistic people often have life paths that differ significantly from the norm and that that’s actually perfectly okay. Artists are really good examples of some of these non-typical life paths, right? I think if the general public appreciates musicians and artists, well then they should also appreciate autistic people, no matter what their intrinsic motivations are because they just need to be given the opportunity to pursue their interests and you’d never know what they’ll come up with.
Anonymous:
Yes, I think that’s something that a lot of people don’t know. It’s a real myth about autistic people that we’re not creative, and actually, the real truth of autistic people is they are extremely creative, there’s all sorts of things, you look at the different careers that all these different people do and all the different interests they have and all the different things they create or draw, or like the music and everything, it’s all where a lot of the interesting stuff comes from. We are not scary people, so feel free, if you want to promote and help autistic people, then feel free to talk to them or message them on twitter or send them an email or something.
Jorn Bettin:
Jasper, but do you have thoughts on this topic?
Jasper Poole:
Around contacting autistic artists or people that might be on the autism spectrum?
Jorn Bettin:
Well artists in general.
Jasper Poole:
In general you shouldn’t you shouldn’t rely on those kinds of people. If you contact artists in general, expect them to kind of shrug it off, I mean basically artists sometimes gravitate towards a niche issue on some occasions, but often that’s to kind of gain publicity for themselves. I think it’s kind of naive to basically just assume that artists will gravitate towards banning ABA therapy when it’s not an issue that’s in the public consciousness. I think that’s something that’s going to take a lot, and maybe there’ll be a bit of a chance of contacting some autistic artists, but in general it’s not a very worthwhile endeavour to try and contact them and it’s something that if you contact people, they’re not known to be accessible, not likely to produce good results, that’s my thoughts.
Jorn Bettin:
That’s a point well taken, but the question here was not, should we all go out and contact artists, remember, this was a question that comes from an artist, and in this case a neurodivergent artist. I think if those people approach us, we want to encourage them. With those artists there’s also less of a risk that they just want to do this for gaming.
Jasper Poole:
If we’re talking about artists in general then, yes, I’d say that could be a good idea. What I kind of inferred from you before is talking about people that already have brand recognition and already a lot of visibility themselves, but if contacting artists in general, yes that could be a really good thing and that would give us a lot of support. I didn’t mean to put down the person that you were discussing before.
Jorn Bettin:
And it’s also to just recognise that amongst the artists and musicians, there will be many who are autistic but who are currently not open about it. I would be somewhat suspicious of artists who sort of want to be our allies who don’t themselves identify as neurodivergent. But if you’ve got people, once they have the courage to come out as themselves identifying as neurodivergent in various ways, I think that adds to their credibility, and then we can start to support them in case they receive a backlash for coming out.
Jasper Poole:
It’s going to be difficult though and sometimes artists don’t want to kind of believe the fact they might be autistic on the down low. I know there is some in a growing amount that feel very proud of it though and I think that that acceptance and that pride is pretty healthy.
Anonymous:
Yes, I think like if you’re an artist and you want to get involved, I would say just create what you feel like you want to. I know there’s a lot of examples of people doing things overseas like autistic pride badges and just generally art across the internet that you can share, anything that basically conveys what your message is, if you’re pro banning ABA then say that through your art I suppose and and do that however feels right for you.
Jasper Poole:
It’s a big convoluted topic to explain to people, like that’s my experience.
Jasper:
Definitely I think that is the thing, it’s very complicated and it is hard to get across in a sound bite or a piece of art.
Jorn Bettin:
Wer’e past the hour and we’ve covered new ground here. Perhaps we can close off with a round of concluding remarks or comments or requests. Naphaphol, do you want to start, what is the key message that you want to leave our viewers with?
Naphaphol:
I have no idea right now.
Jorn Bettin:
Well you’ve stated very clearly what your goals are, so we’ll reiterate that on the web page that we will publish with the recording, and of course it’s all about increasing the level of awareness in places like Thailand about the dark side of ABA, the fact that these practices actually cause severe harm to autistic people. Within the international autistic community it must be one of our responsibilities to assist those that are in places where there is less autistic community because we all know how it feels to be isolated as an autistic.
Naphaphol Suwanacheep 1.06.37
My goal: I want to get 1,000 likes on Facebook, because I can it can make content that many people are interested in, like making podcasts in Thai language.
Anonymous:
I can like you on Facebook, like your page.
Jasper Poole:
I will too. It was good talking with you Alice and sorry how do I pronounce your name, Naphahpol, it was nice talking to you as well. Both of you have some pretty good and pretty valuable perspectives and I’m glad I got the chance to hear them tonight.
Anonymous:
Yes, I just want to say likewise, and yeah, I’m feeling it’s a hard road ahead but I think it’s time to focus on these positive parts we can do and act on, and create. That’s what we do as we work hard and we make stuff. That’s what I’m gonna put my energy into, and hopefully with enough of us across the world we can just not have to worry about the ABA and squash it down and then get that access to government that we really need. I think that’s the thing that we need going going forward.
Jorn Bettin:
Yes, well I mean I think as a result of the petition and these panel discussions and so forth, from my perspective it’s stimulated further collaboration between autistic people here in Aotearoa New Zealand, and I think we need to just build on that. In Auckland for example we are meeting every two weeks to discuss various topics that are close to our hearts. I know you’re based in Wellington. What I’ve been thinking is, maybe if you want to participate we can use Zoom or something like that, just to basically dial you in and open this up to people all around the country, because one of our challenges here is that we’re geographically quite distributed and then also at the pandemic of course, the opportunities for face-to-face meetings are few and far between.
Anonymous:
Yes, I think that would be a great idea.
Jorn Bettin:
And we’ll continue this collaboration, and time zone wise I would like to really also invite whoever is watching this from Asia or the recording later on, we can easily schedule these types of panel discussions so that it fits the Asian time zones, and I think it would be lovely to to have further people from Asian countries participate and contribute there to our collective learning. Beyond these panels it’s websites like Neuroclastic or the Autistic Collaboration Trust where we can compile a knowledge base with links to all these other websites from autistic people from all over the world. We need to build out this repository of autistic knowledge. Thanks everyone for participating today and we’ll continue collaborating and I hope we’re gonna make tangible progress towards bans of all forms of conversion therapy.
Jasper Poole:
Thanks a lot for hosting this Jorn.
Anonymous:
Thank you
Jorn Bettin:
Thanks everyone here what a pleasure, take care.