Pros and cons of autism disclosure – "a different brilliant®" podcast

Madeline Lobsey (ML): Welcome everyone to a different brilliant®. I am your host, Madeleine Jane Lobsey, and this is an Aspect podcast. And today, we are going to be discussing the topic of disclosure for the Autistic community and all of the impacts of that. And we're going to discuss how sharing being Autistic can lead to acceptance, but also to stigma and sometimes even discrimination. We will be sharing insights from research and we will also be talking about real life experiences.

The analysis of over three years – is pretty phenomenal – over three years of looking at Twitter and Reddit data and different Autistic people's experience of that disclosure itself is a very complex issue and it doesn't have a simple answer. But the studies that we're to talk about today highlight the crucial role non-Autistic individuals play in reducing challenges that are associated with disclosure.

And I am thrilled to be re-joined by a couple of previous guests. Again, I'm joined by Abbey, who is a Research Fellow and Educational Psychologist at Autism Spectrum Australia. Abbey has a background as a teacher and advocate, a researcher, and their work is driven in their role as a sibling of an Autistic person. And I'm also joined by Chris, who is an Autistic autism researcher with Aspect, an Adjunct Research Fellow with Griffith University Inclusive Futures Beacon. And he also serves as an executive member of the Australasian Society for Autism Research and non-executive director at Empower Autism. Thank you for joining me today.

Abbey Love (AL): Thanks, Madeleine.

Chris Edwards (CE): Thanks.

ML: All right, well, disclosure. I think I do want to just briefly say that for anybody who doesn't know, disclosure, when we talk about it, is when somebody says to somebody else – and it's often somebody that they know, could be in their family or friendship circles, but then also could be at places like work or education – where they let people know their diagnosis or let people know that they're Autistic. That's what we're talking about when we talk about disclosure. So, Abbey, why don't you just kick us off with some of the basic findings that you've found in regards to disclosure?

AL: Thanks, Madeline. Our query into disclosure really came from this desire to provide research-based advice around whether or not we should be supporting students to disclose, whether or not we should be encouraging parents and caregivers to support their kids to disclose, whether or not Autistic adults should disclose, because we were seeing this really kind of inconsistency in research where we were hearing from Autistic adults that disclosure can often lead to an incredible amount of stigma, discrimination, lost jobs, and challenges with the criminal justice system and ... lost relationships. We're hearing, you know, this clear message that it's not going well. And then we were seeing other research studies that highlight the non-Autistic viewpoint that disclosure should be encouraged, for example, in the workplace. The more we know about somebody else's identity, the more support we can give them. And so those weren't matching up. So, we really wanted to step back and get some more information about the experiences of Autistic adults specifically so that we can then advise things like schools and parents around whether to or not. Yeah, whether to or not. And we knew it wasn't going to be clear cut, but also just being able to have an evidence-based answer.

We started this program of study with a really basic survey to start just asking Australians, Autistic Australians, their experiences with disclosure, especially around identity. So, we were trying to understand if identity had an impact on disclosure decisions. And then we went on to a really exciting study where we asked 36 adults to track their disclosure opportunities over two months. So, instead of just retrospectively, telling us when they've had to disclose, we asked them in real time to use a smartphone app and tell us what opportunities they were having to tell somebody.

ML: So you say opportunities, but I don't know, I'm already going, really, is that an opportunity? But what you mean is, that moment where you have a choice of, could disclose or not in this moment. That's what you mean.

AL: That's exactly right. And so then the participants could let us know they had a disclosure opportunity and then they would go on to tell us did they choose to disclose or did they choose not to and why. And we got a lot of information in not only the disclosure experiences but often hearing why somebody chose not to. And their reflections on that. So that was really exciting. That went on for two months and we learned a lot about those kind of what the different contexts and the different times throughout different days and situations where people might have those opportunities. And that led us to turning to social media, where we got to explore a couple years’ worth of Twitter and Reddit data to listen to the conversations around disclosure online and to hear experiences and again, take that step back and say, what are we hearing across all these experiences?

ML: So, you would join conversations or just observe conversations on Twitter and Reddit and see what people were talking about?

AL: That's correct. So, we did not join conversations. So, this was pulling data that was already there. This is pulling the stories and looking through the stories for themes. Going through this was the hard work that Chris did for this study where he went through them all and tried to pull out what was he hearing across the different experiences, across the conversations for Twitter and Reddit. Was it the same across these two platforms? What were we hearing that were patterns really? And how can we describe these patterns and make conclusions based on those patterns?

ML: Yeah, well, I think this is really exciting because, you know, I only have anecdotal experience of disclosure, but in anybody I know, like just talking to the people I know, but it's even exciting to me that you're still using anecdotal data to actually discover something here, just in a much larger scope of people.

So maybe Chris, what you could talk about is it might be a personal viewpoint, but also from the research, why is disclosure such an important issue for Autistic community?

CE: Yeah, of course. It's both important and it's really complex, which has been acknowledged that disclosure can help Autistic people receive those accommodations and the support, particularly at work and in school settings. But then if you don't disclose, you can miss out on that possible support. But then sharing being Autistic can alleviate some of that stress of hiding your identity or hiding who you are. But it also includes quite a lot of emotional energy really to disclose, preparing for, you know, will they accept me? Will it be a negative experience? It's just, it's, it's a lot to, to go through.

ML: Yeah. Again, I'm just thinking about my own personal experience and my, and the experience of my children. I guess I'm trying to establish then why is it, why is it important? Like, that's the hard one for me. Like I know it's important, but why?

AL: I think one of the things that we heard, especially in that study where we asked people to track it in real time, was that one of the positive things that can happen during a disclosure is it's letting them be more authentic. So, I think one of the quotes was, “the confidence to be more me and less chameleon”. So, when I tell somebody else I'm Autistic, I'm allowing myself to be more who I am. We also heard great stories around advocacy. “I tell other people because I want to advocate for the community. I want to raise awareness. I want to challenge expectations that me, as a doctor, I am Autistic and I'm here. And I want to name that and let other people see me as who I am.” So, there was a lot of positivity around that. Like Chris mentioned, it's definitely a tool for getting support in the workplace, getting support in school, seeking accommodations. We heard from some individuals who would tell people at airports so that they could board the plane first. Chris?

CE: For the people listening, I'd raise my hand to butt in. While there, so there are those benefits like the support you can get from disclosing, but from our data, there was the people that described how disclosing was referred to as career suicide, basically, where if you disclose that work, that's the end of your job. You're out of the job. You're not progressing any further. So, there's that living in real fear where anyone at work finds out, that's the end of me. That's the end of my career. That's the end of my money. I’m in trouble.

ML: I mean, it is like that, isn't it? It's almost like that knife edge of what am I going to get on the other side of this when I disclose, you know? I guess that's what you're backing with the evidence and the research is that is people's experience.

AL: Absolutely. I mean, mixed reactions was our first theme, wasn't it, Chris? It was that there isn't consistency in how people respond across certain contexts. Yeah, there's so much negative, so much positive, but there's also the neutral where it wasn't overly positive, it wasn't negative, but, I guess the Autistic person still perceived the neutral reaction to be good because they're not making a big deal out of it. It's not negative. It's just, “Okay, so what? Cool”.

ML: Yeah. Yeah, I was just thinking though when it is that thing of you build yourself up to the disclosure sometimes, right? Like, I'm going to do it. And like, I love what you said about the energy that it takes. And then you say it, I can almost imagine that neutral thing can be more disarming because it's like, “Well, hang on, I was ready for a terrible response. I was ready for a good response, but neutral was kind of like, what do I do with that?”

AL: I think so. I think managing those reactions, no matter what they are, is one of our findings of our research that, you know, back when we started, when we started asking the questions around disclosure, we wanted to be able to give some advice. And our advice is to prepare these individuals for the complexity of this. Prepare yourself and ask really, are you okay with a mixed reaction? Can you help get yourself to a point where you know it could be challenging or you know it could be positive and be prepared for that? That's part of kind of that advice that we heard.

CE: Yeah, definitely. And one of the other things that came out a lot, the key word I think was “safety” for people considering disclosure. It's just other people you're with safe, is your employer safe, is the environment you're in safe? And if you do not feel safe, then maybe disclosure is not right for that situation and that's completely fine.

AL: Yeah, we wanted to normalise non-disclosure, too. So that was part of it. Yeah. Yeah, saying it's perfectly fine to choose to not share your identity.

ML: That's so good. That's so good. I’m mean, when we were off air, I was telling you about my son who on one side of his life did a “ding ding ding” on a cup to announce at a dinner table to the family with joy. And then at school says, ”My main goal is to be invisible and under the radar.” And I have been, that that's a problem, but I just got then, no, it's not. Like it's a totally valid thing. I hadn't really thought about the safety part and it's a totally valid thing to not want to say. Yes, Chris.

CE: And it's respecting that privacy of the decision. it's the Autistic person's, it's their information who they share it with. If somebody discloses to you, it's not your information to then share with other people. It's on them. It's their private information. You should respect their confidentiality.

AL: One of our themes was we're not asking too much, you know, we just want to be treated human, which is, that's my identity and I get to share it when I want. And I identified that as an LGBTQ person, that's the same thing for me. I don't always want to share my identity because it's not always safe. And I think, you know, finding that out in this research was a really important thing. So, we're now more about sharing with people how they can get prepared for this. How can they think about some scripted responses that they can have ready and how they can judge their internal resources, too. So, like Chris was talking about safety, but it's also about do I have it in me to stay with this conversation no matter where it goes? And a lot of our participants were saying that's how they made the decision about disclosing or not. They'd say, “You I don't have it today, you know, so I didn't tell, I didn't mention it, I just left”.

ML: Man, that's very powerful too. I like the way you said that, do I have it in me to deal with whatever comes back? And sometimes you do. Sometimes you advocate and push and accommodate and talk about autism and share with people and sometimes you don't. It's not, and I think, yeah, again, normalising that is really critical for us, like that's perfectly fine.

Okay, so then Chris, maybe you could say something about why the decision to disclose is so complex and personal for people.

CE: Definitely. it definitely comes back to weighing up the risks and the benefits. So, what am I hoping to gain by disclosing? Is it worth the possible risks if it goes wrong, depending on the context? So, is it a workplace, a school? Is it that risky workplace where if I disclose and it's not received well, I risk losing my employment? It's thinking about those personal experiences. Have I had lots of positive experiences in the past and maybe I'll have another positive experience or have I had negative experiences and I'm quite cautious now about who I'm going to disclose to because I am living in fear on how people may respond when I disclose.

ML: I mean, even just listening to you, there's such complexity in that choice. And I do love what both of you said about, it's a personal choice and it, and it's not a personal choice you make once it's a personal choice you make every time there's a quote-unquote opportunity to disclose or not.

AL: I think we learned with our study where people attracted on their phones, I think the average was about six times a day. People would have those moments where it crossed their mind, “Should I mention it or not?”, that was the average, but it went from zero times to a lot more, I think it was 19 was our highest, you know, that in one day. Yeah. So well, the range across people. So sometimes people wouldn't think of it at all. And then all the way up to I thought about it 19 times in one day. And so yeah, that just changes depending on those contexts that Chris was talking about in our, in the social Twitter and the Reddit data, we saw a lot about dating relationships. Do you want to talk about that at all?

ML: Chris's face tells us otherwise about whether he wants to talk about it or not.

CE: Just some of the responses were shocking online, as you can imagine for anyone who's been on Reddit, it's filled with absolute filth. There's people that lost relationships from dating, they disclosed and that's the end of their relationship. Even potential partners asking if they could catch autism from the person they're talking to.

ML: I don't even know what to say to that. Okay.

AL: I think it just takes it beyond what we think of immediately with disclosure. Like my work in disclosure started back 10 years ago when I was doing it with police and the Autistic community.

ML: Okay, this fascinates me because I'm like, I mean, just that whole system of law enforcement is a conversation in itself. And then you try and add complexity of being Autistic to that. I don't know. I mean, what did you find?

AL: Well, it was back when we, you know, I hadn't done this research on disclosure. So, part of my approach was to help people tell police officers that they're Autistic and then to help police officers know what to do with that information. You know, it's both ways. It's not only about saying that you're Autistic and helping police officers, kind of give you a little bit of space, give you some extra time and knowing kind of what to put in place. But it was really about training police officers to receive that information. But, you know, kind of speed through 10 years and it would go back to that idea of safety and depending on where people are and you know, whether, just depending on where people are about is kind of guiding whether or not that's a good decision, whether that's with police or whether that's in a dating relationship or with families or for a job.

ML: In hospitals, doctors’ appointments, that's another one I just thought of where it would be really I don't know, a big deal.

AL: It is. We had some interesting quotes, didn't we, Chris, about doctors' offices. A lot, a lot of quotes about you can't be Autistic or that's not right.

CE: Yeah, we're having a conversation. You can't be Autistic.

AL: Or switching to, you know, talking to them like a child. Yeah. Okay, now I have to slow things down. You know, no, like just horrific experiences with doctors and nurses.

CE: Every health professional basically. We had nurses, GP, psychiatrists, pharmacists, counsellors.

ML: Yeah, okay. Well, Abbey, maybe what you can tell us a little bit about is what factors should someone consider, you know, that when they do have those moments and moments of choice, what should they consider when they're deciding whether or not to disclose that they're Autistic?

AL: Yeah, so using all of our research, we've really distilled it down to five different factors that we think are will be helpful for people to think through when they're trying to kind of think ahead about their disclosure decisions or decide what their own approach to disclosure is. And we created a guide around this kind of to help people think through these different steps. And that first one is the piece on safety that we've already talked about. Do I feel safe to disclose? And it's perfectly okay not to feel safe to disclose and to choose non-disclosure. We absolutely know society has a long way to come. And that's not on the Autistic person. So, if we don't feel safe in a certain context, then it's okay to choose non-disclosure.

That second point was around thinking through whether or not we have that motivation to disclose. So, for some people in our study, it was really important to be an advocate for autism and to speak up about being Autistic and to bring visibility. So that's motivation to take on whatever complexity comes afterwards. So, to weigh up those decisions or maybe the motivation is for an accommodation. Maybe I really do need to get some changes in my workplace and so that's my motivation to disclose and then that kind of leads you to saying, “Yeah, it's a good idea”. We had the piece about resources. So, whether or not you have the time and the energy and the emotional capacity to disclose and that's moment to moment. It's the spoons, it's the conversation around spoons. Do I have the spoons to disclose? Do I have that emotional energy, am I prepared for how people might respond? So that's what our research is trying to do, bring this visibility to the different ways in which people respond so that we can be real about it. It's going to go badly. Sometimes it does. We've heard these stories. We want to kind of bring light to the stories and then sometimes it goes really well.

And then our last point was reflecting on the experience afterwards. So, what can I learn? So for example, one of our participants, another airport story said, “I didn't ask to board the plane. I didn't tell somebody I was Autistic at the airport, so I didn't get to board the plane early, but had I, I would have felt much less stressed and worried and anxious.” So I wish I had. So that's a reflection of that person saying, maybe next time I will speak up so that I can board the plane early. I think they noticed that somebody else got to board early and they were thinking, had they spoken up, they might have gotten that extra support and their experience would have been more positive. So being able to reflect and giving yourself that grace that maybe you didn't do it the way you wanted to the first time, but you can do it differently the next time.

ML: Yeah. Wow. That's really good. I think we've got to get this in the notes of the program so that people can go back and reflect on that. And I do know that there is access to resources on the site too for people. I was also thinking, look, I'm probably throwing a spanner in the works here, but I was thinking about intersectionality, right? And I started to think about the complexity of gender, sexuality, culture, language, all of those things. And that is going to add something else to the mix about disclosure because there's a further complex, well it's not for the person but for everybody else, there's a further complexity to the identity. Is there anything that you know about that?

AL: Yeah, our first study was about identity. That same question you asked, I had a very similar supposing, you know, again, as myself as a queer individual, I was, you know, asking this question, “Is there complexities? And the different identities, having multiple identities to disclose, does that make it easier or harder?” And, you know, I think there's still more to do in this area. I don't think we've answered all the questions, but basically we see those similarities between disclosing any of our identities, no matter what they are. We see the similarities in the way people think through it, the way people make those decisions. So, whether or not they're feeling safe, that's the same across a cultural identity or a queer identity, a gender identity. So, whether or not they feel safe to share their pronouns and share their identity, that's going to be different from situation to situation. We did find similarities in people who identified as a queer minority and people who had an Autistic identity. We found similarities in how they chose to disclose. So again, I think that just is saying that when I have experience in other identities, kind of I apply that to my own Autistic identity.

ML: And a lot of what you've said, this is one of my favourite things about accommodations, neuro-affirming practice, all of the things that we talk about on every podcast, the difference it would make for neurodivergent people would also make a difference for everybody else. So, all of those things that you said that could quote unquote prepare you for disclosure could be across all sorts of sectors of life and identity.

AL: Absolutely. Yeah. It's just about thinking these through and preparing yourself for the reaction and knowing that it's okay to choose different things each time and that it does have a lot to do with internal resources. We saw that a lot, didn’t we, Chris? Like the people saying how tired, how exhausted they are, they can't do it again. And I think that's okay. I think. Yeah, naming that, especially for our students, if we're thinking about, what do we need to be training and supporting our students to do in this area? It's to recognise their own internal resources, really.

ML: I think that some of the biggest things that I've gotten out of your conversation so far was that it's okay not to, that safety is an issue, that personal resources are valid and looking at that. And that every single time it's a choice, it's really not a once off. All right, well, Chris, based on all of your findings then, what steps can society take? That's the big question. Can society take to create a more supportive environment for Autistic individuals?

CE: We definitely need a lot more public education about autism to dispel those myths and reduce that stigma. We need better portrayals in the media. need better public discussions to help foster that understanding and acceptance. We need more Autistic voices in the media, in advocacy roles, in public roles. We need those visible Autistic role models to challenge those stereotypes and show the diversity and capabilities in the Autistic community. We need education for any professional who could possibly support an Autistic person. Airports, employers, educators, healthcare providers, they need to understand how to support an Autistic person. And we need to respect the privacy and the autonomy of Autistic people regarding their decision. Disclosure is not necessary. It's a person's choice and if somebody shares that information with you, it's still their information. It's not your right to share it with other people.

ML: Yeah, I look, Chris, for prime minister, I mean, there's just so there's so many good things that you've said there. But I guess if I was going to try and summarise the whole world of what you just said, it would be that education really matters. And it's not just any old education. It's the thing that you've said over and over again, both of you about Autistic voices and having Autistic people educating all of us. And the other part is the willingness for Autistic people to be public and in those roles of, you know, whether they're, they are a teacher, a school principal, or they're in the media or they're a doctor or whatever those, all the spaces of life, that there's more people that are free to be public about that. I guess interrupt perceptions about Autistic people. And then for all of us, the right to choose and that it's our information. So, I guess if people are listening today and they may be Autistic themselves and have their own stories of disclosure or choices to make, or there's someone, a neurotypical person or in the environment that could make a difference, are there any final moments or top tips that you would say?

AL: Well, that's a good question. Final moments. I think just promoting that safe, one of the neat findings was hearing, okay, what are we saying when we say safe? What does that mean? And one of the things that made situations safe for somebody to disclose was that person in power, whether that's a teacher or whether it's a doctor, whether that's a parent, starting the conversation. So, it doesn't mean that they have to say I'm Autistic, but they might share that they have a neurodivergent son or daughter. It might be that they share that they struggle with anxiety. It might be that they just start that conversation about their own self, opening it up, the conversation for somebody else to feel safe to disclose. That was a really common one. And I think that's a really easy thing to do. You know, it's just about opening up that conversation for yourself, sharing your own identity. Myself as a teacher, when I share that I'm queer myself, that opens it up to all these stories from my students that maybe have nothing to do with being queer, but suddenly they feel safe to tell me what's an important identity for them, whether that be a disability, whether that be something else. So, I think just showing that vulnerability when you can and when you're in that position of power as a teacher, as a doctor, we heard that a lot, Chris didn’t we?, from how important it was when somebody saw or somebody heard that their doctor or medical professional or educator was Autistic.

CE: Yeah, definitely. And it's also that promoting that welcoming culture. So for non-Autistic people, organisations, showing those signs that it is a safe environment with you.

AL: Yeah, no, think safety.

ML: Yeah, I do like what you said about showing the signs because it does, I think it matters when it's explicit. It matters when somebody actually says, I like the thing you said about starting the conversation with sharing yourself because in my experience as a human being over 50 years of life, what I know is that vulnerability causes vulnerability or authenticity causes authenticity and safety causes safety. And it is, it matters when people show that when it's explicit, when it's in the foreground, it's why it matters when you, you said people in power or people of authority. It's why it really matters.

AL: It's got a start there, doesn't it? Because I mean the stories we heard on Twitter and Reddit about I can't I will lose my job or I have lost my job or my financial support You know, I can't do this. But if somebody that's a manager chooses to do it or somebody that's got that power starts that conversation then it becomes okay

CE: There's those just acknowledging those risks, but the more people that are in those positions of power that are challenging their stereotypes, that will make it easier for the others who follow.

ML: All right. Well, for everybody listening, you can find resources on Aspect’s website and we will absolutely make sure that you have those key areas that make a difference when it comes to disclosure. And we thank you for your time today and this extraordinary conversation. Thanks, Chris and Abbey.

AL: Thanks, Madeline.

CE: Thanks.