It is also a question we’re regularly asked at Reframing Autism. We’re pleased to release this webinar on a research project from Dr Chris Edwards and Dr Abbey Love from Autism Spectrum Australia on the disclosure experiences of Autistic adults, so you or your loved one can make informed choices when disclosure opportunities arise.
Access Autism Spectrum Australia’s series of practical, evidence-based resource guides to support Autistic individuals in their disclosure experiences here.
Sharon Fraser
Reframing Autism is excited to share a webinar with you on some important research that was conducted by Autism Spectrum Australia or Aspect. Dr Chris Edwards and Dr Abbey Love from Aspect conducted a study on the experiences that Autistic people have when disclosing their Autistic identity to others. In this webinar, Chris and Abbey summarise and present their research on Autistic disclosure to us. Disclosure is an important topic to our Autistic community. It can be tricky to navigate when and how to disclose that you are Autistic to others at work and in the community, and even to our family and friends. We’re often asked about disclosure here at Reframing Autism. And given the complexity of the factors that need to be considered, it’s very valuable to have research like this that can help others in their disclosure journeys. Chris and Abbey have also created short disclosure guides that can be used as references for anyone interested in exploring disclosure further. These are linked to in the presentation and in the video description. Now, I will turn it over to Chris and Abbey to share their findings.
Dr Chris Edwards
Welcome to this webinar that we have called “Should I Disclose I Am Autistic?” So my name is Chris Edwards, and I’m here with Abbey Love and we are researchers from Autism Spectrum Australia, also known as Aspect. This webinar will discuss the findings of a recent research project we did around Autism disclosure.
Dr Abbey Love
We have split this webinar today under a few key sections. First, we’re going to briefly describe who our organisation is and the type of research that we do. Chris will then explain why we research disclosure, and I will summarise what we actually did. Together, we will share what we found, and then Chris will discuss what our findings mean. Finally, we’re going to share the resource guides that we created to help Autistic and non-autistic people based on these findings. We wanna start by providing you with some context for our study and explain some background for our research team. Our research team is a department within Autism Spectrum Australia, or Aspect, an Autism-specific service provider. Aspect delivers services across education, assessment, allied health, and employment. And our education departs in four locations. Our research team is uniquely situated to plan, support, and implement research projects across Aspect to ensure the continuous improvement of our policies, practices, and our service delivery.
Dr Chris Edwards
We are two of the researchers as part of Aspect’s research team with a partnership approach with Autistic researchers. For instance, myself. We also have Autistic advisors on projects’ content that’s reviewed by an Autistic think tank. It really just makes sure our research is relevant, respectful, and actually helps Autistic people to live their best lives. Our future research programme is being guided by the outcomes of a recent research priorities project that our team did. Basically, exploring how our Autistic end users could live a good life. And the bottom point includes some of our current projects that can be found on our website with my personal favourite being our five-week, self-compassion training programme that we have developed and are evaluating. But our talk today is looking at the disclosure experiences of Autistic adults. Why did we explore disclosure? So I am Autistic, so I’m making the choice to disclose my identity, but the research is quite complex around disclosure. The positives can include understanding, acceptance, individualised support, accommodations, and person-centered care, but it can also lead to negatives like discrimination, misunderstanding, judgement, or bullying. Whereas not disclosing being Autistic or pretending to fit in with a non-autistic world can lead to psychological distress, stress, and anxiety. So it’s a double bind in many cases, which I’m sure many people can relate to the experience where you may disclose being Autistic and then people judge you based on the label or you may not share being Autistic, but then people judge you anyway based on your behaviour. So it can almost be a lose-lose situation. The research assumes that Autistic adults should be disclosing rather than considering would disclosure actually be helpful or harmful? In the research, non-autistic people generally have positive responses to disclosure, but they are disclosed to by reading brief narratives or watching short videos. Autistic people often share more negative responses to disclosure when captured through interviews. So it’s clear that there’s a disconnect between what is in the research and what is actually happening in real life.
Dr Abbey Love
So to answer some of these gaps and expand the research, what did we do? We wanted to understand what disclosure experience looked like over a period of time. So we designed a short survey that could be answered on a smartphone app. Participants were asked to tell us every time they had a disclosure opportunity, which we defined as a moment where the individual considered telling someone else that they were Autistic. If they went on to disclose, this was a disclosure experience. If they did not, this was a non-disclosure experience where they chose not to disclose being Autistic. We wanted to know about both of these experiences. We felt this was a strong approach for a few reasons. First, participants could tell us about their experiences immediately after they happen. This would hopefully help us with accuracy and also show us the range of experiences. As often, when you ask a participant to tell you about one experience, the most memorable is shared, not always the range. Also, participants were able to complete the survey as often as they wanted across the study period, which for us was March to May. We emphasised to participants that we wanted and welcomed both reactions to disclosing and reactions to non-disclosure. After recruitment, we had a total of 36 Autistic adults agree to participate. For our study, these adults were 10, we had 10 males, 21 females, and five non-binary. The average age was about 38, but we had a large range from 21 to 71 years of age. Most of our participants were of white ethnicity and living in Australia. Our participants were diverse in other factors and represented individuals who had a range of employment statuses, identified with a diversity of sexual identities, and noted a variety of relationship experiences. So we felt grateful that we had participants across a diverse range so that we could get experiences across a large diversity of people. To show you what the app looked like, we wanted to share a few screenshots. The first shows how the survey was presented within the app, and the next two showed two different question types that participants received, just as an example. So just remember that a participant could click on the first, see the first screenshot where you can see disclosure study author ARCAP. They could click on that and answer the survey as many times as they wanted. So anytime that they had what we were calling disclosure opportunity, that thought that they may or may not share that they’re Autistic. We supported the participants across the two months if they had any questions or concerns and we sent a reassuring email halfway for anyone who had given us experiences, telling them that we had received their data and everything was going fine. And we set a reminder to those who we had not received any data. Although there was no requirement to send data. So if a participant had no disclosure experiences across that time period that we were collecting data, that was okay too. At the end of the two-month period, we gathered a total of 231 responses from our 36 participants. A response is defined as that disclosure opportunity. So whether or not they disclosed or did not disclose, we heard from participants a total of 231 times. On average, participants provided six responses individually across those two months, but some participants provided zero experiences, as I just shared, and up to 19 experiences. As you can see on the circle graph, we collected 78 experiences where people did not choose to share that they were Autistic and 153 where they did disclose, they did share that they were Autistic with somebody else. So before we look at group level data, we wanted to illustrate how this two-month period might look for just one participant. We wanna introduce you to Sharyn who’s just a pseudonym from one of our participants and we’ll share what Sharyn’s responses looked like across the study. So from March to May, Sharyn provided a total of 10 disclosure opportunities. She’s shared two non-disclosure, you can see right at the beginning near March, and eight disclosure from March to May. So a total of 10 opportunities. Sharyn’s experiences were across four different contexts. Overwhelmingly, six were experienced at work and one was in a retail setting, and two were in a home setting. One work experience Sharyn shared with us was a disclosure experience that Sharyn felt was quite positive. She scored it as a 76 out of 100 when reflecting on whether or not it was a positive, neutral, or negative experience for her. This experience was a verbal conversation between Sharyn and a colleague. She said, “My work colleague did not change her tone or appear different. She explained that she has a son with Autism and her partner’s Autistic as well. She said that it didn’t matter, but she said it’s good to know because if she understands my cues and sees I’m struggling, she would understand why.” Sharyn further reflected that she felt she gained an ability to trust her workplace, following this positive disclosure experience. In another experience, Sharyn was in a retail setting at the hairdressers and had a non-disclosure experience. She explained, “My beautician and I were talking and she asked if I was relaxed and I said, ‘I’m never relaxed.’ And she replied, ‘Same, actually.’ I feel like this lady is really basic and I don’t actually enjoy talking to her. So therefore, I didn’t feel as though it was appropriate to go on and tell her.” She further told us she did not need to know. Not everyone needs to know. This statement echoed a common theme for our other participants that it’s okay to choose non-disclosure sometimes when there is no need. Now, that we’ve looked at one participant, we want to look at the group as a whole. So we’re going to talk through what we found for our participants all together. On the screen, you’ll see a column with the context, telling you where the disclosure opportunity happened. I’ll show each context, and then share in black how many non-disclosure experiences. So when people chose not to share that there were Autistic, as well as how many negative in red, neutral in yellow, and green positive disclosure experiences. So the red, yellow, and green all represent disclosure, when someone chose to go on and tell someone that they were Autistic. And the negative, neutral, and positive is a reflection on how they felt that experience was for them personally. So first, we’re going to discuss healthcare settings. For healthcare settings, we recorded both non-disclosure experiences, you can see those in black, and disclosure experiences. Overall, the experiences were positive, those in green. However, we did record three negative experiences, those in red, which we felt are just as important to talk about considering how important a supportive and understanding healthcare system is. The next context is the workplace. This is consistent with other studies around disclosure, but we found a range of disclosure experiences happen in the workplace for our participants. In black, you can see that we had 28 non-disclosure experiences, by far the biggest context where participants had to deeply consider their disclosure choices. We recorded 31 positive experiences, those in green, and 13 in red, which were the negative ones. Three experiences were neutral. This context had the most negative disclosure experiences across all contexts, and if we look closely only at the workplace, we can easily see how complex disclosure opportunities are in the workplace for our participants. Home was the next context. Participants shared only 20 disclosure opportunities in total with only three accounts of non-disclosure as could be explained by the context of home and 17 total disclosure experiences. So participants were more than likely sharing that they were Autistic with people in their home setting. They were mostly positive, those in green, although six were recorded as negative experiences. Next, we have community opportunities. This was a popular context for disclosure opportunities. Participants shared 21 non-disclosure in black, but an overwhelming 28 positive experiences in community settings where they had to interact with community members and choose whether or not to tell someone they were Autistic. Retail was the next context where participants described opportunities that happened while out shopping or in business establishments. As has been the pattern, disclosure experiences were mostly positive and 10 non-disclosure experiences were shared. Finally, education context. For this category, our participants shared mostly disclosure with only four non-disclosure experiences, those in black. Disclosure experiences were positive in green, although four negative were recorded. Now that we’ve talked about all of the context individually, we can look at the screen in total and reflect on what we see across contexts. As we stated, the workplace context received the most disclosure opportunities, as well as the most negative disclosure experiences. Interestingly, education had the fewest disclosure opportunities, although that could have been due to the timing of the project as education related disclosure opportunities might happen at the beginning of educational programmes. One commonality across all contexts is the mix of experience. What was clear in our study was that disclosure opportunities vary drastically depending on the individual factors in the moment. It was very rare for our participant to have all positive experiences or all negative, or an all disclosure or all non-disclosure. The data here points to the complexity of disclosure and the importance of considering individual factors that we’ll talk about now as our participants shared with us.
Dr Chris Edwards
So what was common for our participants? After looking at all of the responses, these are the five key things that were common across what they told us. That they thought about their internal motivators, their decisions were influenced by the people and environment, disclosure required time, energy, and actually knowing how to do it, disclosure led to a wide range of reactions, and people learnt from their experiences. These are the key things that have informed our resource guides that will be shared at the end. And I’ll briefly discuss each of these including some example quotes from our participants. Just a quick note about the following quotes that I’ll only be talking about the blue, highlighted sections on each slide just to help show what I’m talking about. So these quotes are examples to represent the reasons, the motivators behind people’s decisions. Looking at the first section, one of the most common reasons people disclosed was to advocate for the Autistic community. Like this participant who disclosed to normalise, destigmatise, and challenge people’s assumptions about Autism. Another reason people disclose was to become more confident, to become more authentic in who they are, embracing their Autistic identity. Through disclosure, this participant gained experience in sharing and confidence to be more me and less chameleon. Not surprisingly, another of the most common reasons for disclosure was to seek accommodations and support like this participant who disclosed at the hospital with their mother. By disclosing, they were able to change rooms where it was quieter and less bright with no LED lighting. Even though it was for my mother, I was able to feel comfortable. Finally, quite a few people had experiences where there was no reason to disclose. Nothing to gain and that’s okay. Looking at the second factor that was common in our study, decisions varied depending on the people and environment. People often did not disclose they were Autistic when they did not feel safe. Either the people and/or the environment did not feel safe. For instance, this participant didn’t disclose during a job interview as they didn’t feel comfortable doing so as it might have meant I wasn’t given the job as the job entails customer care. The people and environment were also factors that led to more positive disclosure experiences. When people felt they were safe, trusted people or in a safe, comfortable environment, people were more likely to disclose and more likely to have positive experiences. And this can be seen in the following quote. “I disclosed to my hairdresser. He was already aware of my sensory issues. I felt safe disclosing to him.” People in the study acknowledge that disclosure takes time, it takes energy, and it can be difficult trying to disclose. Looking at how disclosure takes time and energy, this has been captured perfectly in this quote. “I’m not secretive about my Autism, but I do choose who, when, and where to disclose. I didn’t have the time yesterday to explain what my Autism means to my friend, so I’m glad I didn’t disclose.” Additionally, a few people expressed they wanted more training and support around disclosure, specifically around the decision making process and how to disclose when they wanted to. For instance, this participant just couldn’t form the words, couldn’t put the sentence together. To be more accurate, I actually chose to disclose I just couldn’t make it happen. For our participants, it’s disappointing, but it isn’t surprising that disclosure was met with a wide range of reactions from other people, ranging from positive to neutral to negative. This positive quote is from a participant who was engaged in a programme, specifically for Autistic people where it felt liberating not to be judged, but rather encouraged and celebrated. There were quite a few neutral reactions to disclosing, like this one example with a nurse. It was a normal reaction, like I’d made a comment on my breakfast. And it’s important to mention that while the reaction of other people may have been neutral, these experiences often felt positive to our participants. And it was disappointing that our participants often experienced negative reactions following their disclosure, particularly in the workplace. Like this one participant who was ‘complimented’ that I should be so proud that I hide being Autistic so well and that I should be so proud that I have a job. The final theme that was common across what our participants told us is that they reflected and learned from their experiences. Regardless of whether they disclosed or didn’t, they thought it was positive or negative, these experiences would likely impact their future decisions. This participant didn’t disclose an airport and reflected on their decision. “Another passenger did disclose and was able to board sooner and avoid the crowd or noise that I withstood. I could have avoided the discomfort. I wish I’d spoken up. Enduring the time with the large crowd was overwhelming and made me more anxious than I believe disclosing would have.” And this reflection went both ways. This participant disclosed to a friend who responded with anger, quite a negative response. “They were offensive when I told them I was saddened by their response to my disclosing. This experience made me less likely to disclose in the future.” What did we learn from our study? Society has a long way to go to truly support the Autistic community, but employers in particular need to do better. This context has far too many negative experiences and it isn’t enough to only promote disclosure. The Autistic community need more support around the decision-making process. Evaluating whether disclosure or non-disclosure is a good idea in that specific moment, which our resources can help with. And it’s okay not to disclose. Disclosure is complex and sometimes it might be the right option, other times it might not. Trust yourself as to whether possible benefits outweigh the possible risks every time.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.
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