i autistic » Projects » Money FM89.3 Interview: Life After Death Autism Forum 2019

Original Audio: https://omny.fm/shows/money-fm-893/life-after-death-autism-forum

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Workday afternoon replay from Money FM 89.3

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Coffee with Clarissa on Money FM 89.3

C: Clarissa
E: Eric Ϲhen

C: Good afternoon and welcome to Coffee with Clarissa the Life After Death Autism Forum is set to happen on the 28th of September, which is a Saturday from 1 to 5 p.m. on the second floor lecture theatre of the Life Long learning Institute located next to Paya Lebar MRT station. It is Singapore’s first major autistic-led autism event. At the event, a panel of autistic advocates will come together to discuss several major issues concerning autistics in our modern society after their caregivers pass on. Such issues include the need for autistics to develop their skills with the aim of creating a firm career prospects for themselves and the discrimination that autistics are subjected to, which may limit their employability. The panel will also be discussing the ways in which autistics can achieve success in their various walks of life that will also help provide for their own living expenses as much as possible.

Money FM 89.3 welcomes Eric Ϲhen, the organiser of the Life After Death Autism Forum to talk us through what can be expected at his upcoming event and how it will help autistics deal with the challenges they face in their day-to-day routines, explain his concept of inclusive equality which he will be introducing at the forum and share his own experiences in dealing with autism.

We welcome Eric Ϲhen to the show.

C: Hi nice to have you

E: Hi! Glad to be on the show

C: Alright tell us about Life After Death Autism forum. What was the inspiration behind organising this event?

E: Well I’d like to use it as a symbolic coming-of-age for autistic advocates in Singapore

C: uhmm

E: So previously we were not really included in other events autism events. We are mostly just playing maybe just doing a side role like giving a performance or very short talk and then the main stars are people who are not autistic. So this event is the first time that autistic people are organising and autistic people themselves are the stars and one of the aims of this event is to prove to people that autistic people are capable of organising their own events and capable being taken seriously. Not just being put aside in a corner and letting everyone else decide what to do to help them but being capable of working as equal partners together with everyone to not only help themselves but to help the rest of society to make the world better place.

C: Unfortunately you are right about that. I think you know the average person does kind of sort of put autism off to the side. It’s like okay we’ll make the decisions for you, we’ll decide what’s best for autistics and how best we can help, you know, the community. But you’re saying that now autistics are stepping up they’re doing it for themselves. They’re proving that they can organise an event for themselves about themselves

E: yes

C: And I think that’s wonderful

E: yes and I think this will inspire many autistics advocates, people who are now just waiting to come out because they are worried that they’ll be discriminated against. It’s going to encourage different autism organisations to actually experiment to begin including autistics in their own decision-making maybe to have autistic board members. So it’s not just one-way relationship anymore after this event.

C: okay I said – I wish you every success with that. That is a fantastic goal to have. The objectives that you hope to achieve with this event sound really really good. I hope that you achieve it. Let’s try to help you with that. What is the reception from the public been so far to this event Life After Death Autism Forum.

E: Well the public is generally supportive and while the most telling support is that I have over 20 volunteers who signed up. It is more than what I expected. In 2006 actually that time I tried to do my own autism campaign and there was just nothing. And now I see that support coming in. Ticket sales are slow for now but I think is expected because people usually sign up very close to the event.

C: Sure and it’s about a month away.

E: yeah so I believe that Singaporeans are ready to take the next big leap with inclusion, namely to treat autistics as equal and to empower them to become partners working together to make the world a better place.

C: Okay let’s give you an opportunity to sell a few tickets. Where can they get tickets?

E: Well, the easiest way is to go to Google and type in Life After Death Autism Forum and that should bring them straight to the event ticketing website.

C: Alright okay now, this is interesting for me as a subject because as a society, we look at autistics you know with their care primary caregivers being parents usually family members and your question is what happens to those autistics after those family members pass on. There are different autistics on different parts of the spectrum, so who is the most benefited from this forum that you’re going to be having?

E: Well I think we need to take a strategic approach to this so there are some autistics who have, let’s say more complex needs like intellectual disabilities, so they may not be in a position to be able to help themselves at this moment. But for those autistics like myself who do not have too complex needs we are able to find ways to unleash our own potential so we can first find ways to help ourselves, and then with a position of strength, eventually we will be able to come together and help all the other autistic with different needs from ourselves or with more complex needs. Eventually, this is a solution for autistics to be able to take the baton from the caregivers and then run the race by themselves together with each other.

C: Alright, we are speaking to Eric Ϲhen the organiser of the Life After Autism Forum. So you have autism?

E: Yeah I’ve been officially diagnosed

C: Okay and you know what walking into the studio talking to you before the microphones came on, I never would have guessed that you were autistic. Which is another probable myth that a lot of people would have that there is a certain type of sign or signs that a person is autistic then the expectations work towards that. I didn’t know you were autistic. I spoke to you like I would any other guest. And you responded to me like any other guest would and I think that is absolutely fantastic and you’ve just debunked a myth that I personally had that, you know, there were preconceived ideas of what autism is and you’re sitting right in front of me proving that I was wrong and I think that if you can reach out to more people and debunk those myths for them as well, then you will go a long way in achieving what it is that you have as an objective for Life After Death Autism Forum.

E: Yes I believe we need to talk to more of these people, people like myself who have found ways to be able to adapt to non-autistic society. So we have found out through learning and through observation how we can interact with other people and how we can improve ourselves so that we can adapt to things that are actually originally foreign and alien to us.

C: What are some of the obstacles that an autistic faces? Explain that to us. I mean, really we don’t know.

E: Well, the most obvious would be the social difficulties, for example, if people want to persuade someone else to do something. Like say, my boss wants me to do something he can tell me directly. But maybe my colleague, because my colleague is not my boss, my colleague may want to hint to me and say something like “Errr could you maybe do something..?” and I may take it literally, if in my earlier days, I may take it literally “could you” meaning that “is it possible that I could?” I could say “yes”, I would say “yes” but I may not actually do that because I may think that you’re just asking me “is it possible that I can do it” and I say “Yeah it’s possible I can do it” but actually you are hinting to me, or my colleague is hinting to me that “hey, you know, you should do this because now I just make a request to you but in a very polite and non-confrontational manner.” So when people signal to the autistic person, an autistic person does not get the signal, then people think that the autistic person is purposely trying to create problems and that can create a lot of misunderstandings and get themselves bullied and can get themselves, maybe fired.

C: Okay, can I take that to understand that an autistic person thinks very linear?
“Can you do it”
“Yes I can”
It’s not necessarily a case of…

E: It is more of the difficulties seeing the intentions that other people are conveying.

C: I see okay. And how do you overcome that? Because we do speak in those sort of ways where we don’t ask a direct or we don’t give a direct instruction. A lot of us do couch it as a soft request. How do you distinguish one from the other?

E: Well maybe overcome may not be the most appropriate word. It’s like perhaps it could be considered that there is an earlier stage in my developmental cycle. So autistics may have a different developmental cycle compared to non-autistic people. So some of the concepts that non-autistic people get at a very early age, which autistic people may need much more time to get. And conversely sometimes the non-autistic person may take a long time to get, for example, how to think systematically, but autistic person may be able to get it at a very young age. So we need to find a way that can understand the autistics developmental cycle. Maybe there are different kinds so we need some research on this. And after that autistic person may be able to be supported to learn the concepts so that they can maximise their ability to master these things as quickly as possible.

C: Okay we’re speaking to Eric Ϲhen, the organiser of the Life After Death Autism Forum. Is it safe to say that autistics who don’t have those more involved needs that like they have mental issues or mental disability issues that require more specific care, autistics who are lower down on the spectrum, can lead completely normal lives?

E: mmmmmm, I hope to find a way but I am, at the moment, I am not able to give a confirmed answer. I can only say that I know from my own experience, people like myself we should be able to find a way of doing it but I do not know about people with needs which are quite different from myself, whether it applies to them or not.

C: Sure, so at this Life After Death Autism Forum, do you have speakers lined up?

E: Well I have another autistic speaker as well as myself. I have five panelists who will discuss about various issues I believe would be quite strategic and important to the autism community.

C: Can you share some of those topics with us?

E: Well, one of the topics will be about exploitation and how we can avoid being exploited. There’s been a lot of talk about inclusion and lots of people jumping onto the autism bandwagon. They are trying to tell everyone, “Hey! You know I’m promoting autism awareness, come and support me. I’m trying to help autistics, trying to empower autistics” etc, but sometimes some of these people do not come with pure intentions. They may come with intention to exploit autistic people for their own fundraising in their own purpose etc so I’ve encountered some cases where, for example, like somebody joining my Whatsapp community group and then trying to sell some dubious property stuff there and pretending to be autistic person so we need to be vigilant, aware. And when the caretakers are not around, the autistics need to know how to deal with these kinds of people and how to avoid them, how to avoid being exploited and cheated.

C: That is across the board, every one of us autistic or otherwise, can fall victim to people who want to cheat us.

E: Yeah, though autistics may be more vulnerable because they may not read intentions and body language as well as most other people.

C: All right, let’s talk about discrimination. Has it gotten better for autistics in Singapore?

E: Well I believe that over the past eight years or so, people have been talking about inclusion and there’s much more acceptance today in the sense that people can openly talk about autistics, autism without thinking that it is a taboo. I remember that some time ago when my mother was trying to do fundraising for an autism organisation – that was about ten years ago – she heard from someone I would say like “Oh autistic, autism, oh well, maybe the parents have done some bad karma in their past life…”

C: [reacted but inaudible comment]

E: …That’s why they get these children. So my mother was so offended and angry but she kept quiet. So that was some of the public sentiment we encountered last time. And today I think people don’t, probably don’t think like that anymore.

C: No we don’t.

E: Yeah and the last time I had trouble getting a job as soon as I mentioned autism. The interview – the job interview will finish in a few minutes’ time. I never heard from them anymore. That was in 2007, 2008 so now I think people might consider. There are some employers who actually openly wanting to hire people who are diverse, who have different needs including autistics.

C: okay well let’s congratulate those employers for their enlightened view and I hope that more and more will come forward and support your community. Before we wrap this up I’m gonna give you another opportunity to share with our listeners if they are interested to attend Life After Death Autism Forum. Perhaps they are autistic themselves or their caregivers of autistics. Tell us again how they can get tickets.

E: So let’s go to Google and type in Life After Death Autism Forum. In the first few entries, you should see the ticketing page and other information that you need.

C: Alright, Eric Ϲhen, organiser of the Life After Death Autism Forum. Thank you so very much for coming and talking to us on Monday FM 89.3.

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Credit: Many thanks to Nix Sang for volunteering to do the transcribing