Ep33: AuDHD Experience — Disclosure and Self-Advocacy for AuDHDers, ADHDers and Autistic Folk.

0:07 We have an audience for harmony and self-acceptance. The Audi HD Psych Podcast.

0:12 Hello, friends. Welcome back to the Audi HD Psych Podcast. I'm Aaron Howe of Clinical Psychologist, and we are different, not defective. Should I disclose my identity as a neurodivergent person? And how do I advocate for myself? These are the questions that we're going to look at today. So I'll start by having a bit of a chat about what disclosure is and what it can look like, whether it's required, and what some of the research says the outcomes are for people.

0:42 Then we'll have a little bit of a look at the repeated disclosure, that it's not just a one-time thing, and the cost-benefit analysis that comes with that. Then we'll have a bit of a talk about accommodations and what we can do if uh to seek accommodations. Pardon me. And what it can say if the accommodations aren't met.

1:07 And then finally, we'll have a bit of a chat around maybe some scripts that we can use to disclose our identity, but also to seek accommodations. So I guess I'll start with the episode is for general information purposes only. It's psychoeducation, it's not individualised therapy, and it's not uh guidance tailored to your specific context.

1:35 If you do need individual support, please find an affirming clinician in your area. If you live in Australia, LOPAC, the League of Autistic Psychologists and Affirming Colleagues, has a register of affirming practitioners, and you can find that on their website at LOPACLOAPAC.org.org. So let's start with a thing almost everyone gets wrong, which is what kind of event is disclosure?

2:03 What is disclosure? So it's important to consider that disclosure is never just a one-off thing. And those of you who sit within the queer communities will will know this already. It's never just uh, hi, I'm autistic, or hi, I'm queer, or uh hi, I'm genderqueer. Uh the one time. It's context specific and people within that context specific.

2:26 So many people will have shared their identity with close friends, maybe with some family, um, but not at work or not at school. Pardon me. And that comes down to safety. And, you know, I always talk about cost-benefit analysis. Uh, what are the costs of, in this case, uh, sharing my identity as a neurodivergent person?

2:48 And what are the benefits? And if the benefits don't outweigh the costs, then disclosure is not obligatory. You don't have to tell people who and who you are. But it is repeated. I may need to tell different people. I may need to tell my supervisors or HR team in my workplace. I may need to have a learning plan or tell my teachers in my educational space.

3:12 Um, and if those people change out, uh, my supervisors, for example, or my teachers, I may need to tell the people who replace them. So it's an ongoing uh disclosure process. In terms of what's normal, partial disclosure is uh arguably the most common thing for a lot of neurodivergent people. Uh, some research by, I'm gonna get their name wrong, Ramuldez and friends in 2021, uh, they found that about 55% of people disclosed to some people.

3:46 Uh only 34.9, so about a third of people, uh, disclosed to everybody. I would sit in that camp. Uh 10% of people just didn't tell anybody that they were autistic or neurodivergent. And in terms of workplaces, uh, you may recall from the um the work-related uh episode that 50% of employers in one study said they wouldn't hire an autistic person.

4:14 And that likely leads to the finding in Romaldez's study that 45, well, 45.8% of employees only disclosed their neurodivergent identity after starting the job. And of those who did disclose, about just under 40% had a positive experience. And 21% of those people had it had quite a negative impact on their workplace and their work experience.

4:42 And that was a study of 238 adults in the UK or autistic adults in the UK. So I beg your pardon. So it is it is a repetitive thing. I might come come out or invite people into my identity and experience at work and then repeatedly at work. I might uh let just my supervisor and HR know because I need some accommodations.

5:06 I might let my immediate colleagues know. They might change out. So it is continual, and that's that's important to consider, especially if it's a really stressful process for me. In terms of um coming out or inviting people in, I do love that language, and thank you to whoever it was in the queer community that uh shared that language with me.

5:28 In terms of inviting people into my experience and identity, it isn't something we do just once. It's a recurrent thing that we do, not just across our time in a specific environment, but across our lives. You know, I like to be uh quite loud and proud about all of my identity because I was in the closet as a queer person for so long that uh if you can see this lovely pink jumper that I'm wearing.

5:50 It is literally uh a podcast branded jumper that makes it very clear that I'm neurodivergent. If my clown attire didn't already. But that's me. And after 51 years of life and finding out who I am and knowing who and what I am, I'm comfortable being that person so that I can have conversations that maybe a 15-year-old autistic person or neurodivergent person isn't yet comfortable having, and modeling that for community.

6:17 But we don't have that obligation to be out loud and proud about any element of that identity. And it's only something that we really want to consider when it serves us in some way. Uh, my outness or inviting everybody in is very much in service of my understanding of self and my confidence in who and what I am.

6:40 That's not everybody's experience. So, in a workplace, do you work with people who may be prejudiced against neurodivergent people? And is identifying yourself as neurodivergent going to yield accommodations that make work easier? Or possibly is it going to yield prejudice that actually outweighs the benefits of those accommodations?

7:03 And that's such an individual experience from person to person, and we need to look at the costs and benefits for ourselves. In Australia, um, we don't need to disclose our neurodivergence status or any health-related diagnosis for that matter to a workplace. Um we can simply share our difficulties and what may help our workplace or help us uh perform the roles that we need to perform in our workplaces and ask for reasonable accommodations.

7:38 We uh in educational settings, we can often have learning plans with our school and our university that acknowledges our uh differences and some ways that accommodations could be made to facilitate our learning and improve our learning. And also in life in general, you know, we can in social settings, I'm really uh obvious about who I am, but in certain settings, I'll explain that typically relatively easygoing, but when I'm really, really stressed, I can be really direct and really abrupt.

8:12 And that's not about a reflection on the person that I'm interacting with. That's a reflection of my brain. The higher my stress is, the more rigid I become, and the more challenging in that breach of those rigid expectations becomes to me when the unhelpful expressions of my autism are on full display.

8:31 So I can share that information in social settings if I think that's likely to be causing difficulties for me, and I can invite other people to engage with that. So there was one study I wanted to touch on to, um, and it looked at disclosure as it happened, and it was experience sampling 36 autistic adults and 231 opportunities to disclose over a two-month period.

9:00 About two-thirds, 66.2% of those experiences resulted in some level of inviting people into the person's identity and experience. Three-quarters, 74.5% of those were experienced positively. And a really great quote from participants within that study was one, I don't have the spoons to disclose and self-advocate in this context right now.

9:27 And I really love that because it highlights that I can share my identity and seek accommodations when it serves me, but I may not have that energy today. And we know that neurodivergent energy levels, social batteries, if we want to use that language, cognitive energy fluctuates day to day and is influenced by all the other stresses in my life.

9:49 If I've just had a relationship breakdown and maybe there's some legal action going on for me, I've got much less energy to give to inviting people into my experience in the workplace or a school setting and seeking those accommodations. So that's the only one study that I could find that uh actually looked at disclosure experiences as they happened.

10:15 Everything else that I'm referring to today is drawn from either recall or from the advocacy experience literature. So I guess it's important to consider that if you've told some people, but not others, there's nothing wrong with that. You're not doing it badly, you're not doing it poorly, you're not not committed.

10:41 We disclose, we invite people in when we feel safe, and we don't have any obligation, and people are not entitled to our information. So please bear that in mind. Disclose where it serves you only and where you feel safe doing so. So it does happen over and over again. I might have new friends, I might have new colleagues or wine supervisors, I might have new HR staff that maybe don't understand my particular condition and my uh presentation.

11:11 And so I do need to keep disclosing. Why do I disclose? Um, could argue that it all comes down to adjustment, whether it's adjustments in the workplace, in the learning setting, or adjustment broadly in expectations of me. If you know that the more stressed I am, the more rigid and abrupt I become, then your expectation of me is going to be that when you see me really stressed out at eight o'clock in the morning, and you're going to be less jarred by me being abrupt, being direct, being sort of a little bit intolerant of interruption.

11:49 Expectation management is really what we're doing here, and then managing any difficulties that might come with our characteristics in certain contexts. Many adjustments require disclosure. Uh, we can disclose that we're autistic or ADHD is Audi HD is neurodivergent. In many workplaces here in Australia, we don't even need to disclose a health uh diagnosis.

12:13 We can disclose difficulties and then we can just we can share what will be helpful in a workplace or in a school setting, whatever the setting is, in helping manage those difficulties for us. Pardon me. And our workplaces are we're obliged to provide reasonable accommodations. If it's not going to cause undue hardship, to me, as a business owner, a practice owner, to put an accommodation in place for somebody who works with me, then I have an obligation, both legal and moral, to put that into place.

12:48 But also for the business owners out there, we want to do that. We want people in our teams to want to come to work because then they're goal aligned. They want to be here, they're doing a good job for us. And we're doing a good job for the businesses that we work for if we actually feel safe, included, and respected in our workplaces.

13:08 And that's such an important consideration from the organizational side of the house to recognize that accommodations are not just an inconvenience imposed on us. They're actually a structural thing that we put in place to make sure our organizations run in the way that we want them to and achieve the goals that we seek.

13:30 So to make adjustments as an employer, I need to know what are the difficulties that somebody in my workplace has. And then I need to know what are the adjustments that can be beneficial for that person. And then finally, the cost-benefit analysis. What's something that I can afford to do? You know, I run a small practice, I'm not a bajillionaire.

13:55 That's not a real number, but let's pretend that it is. Um, so I can't, you know, put in extra walls for padding and sound, and I can't create uh expensive spaces. What I can do is have ball chairs that can make me feel enclosed or make people feel enclosed. I can respect that I love to speak quickly.

14:14 Some of my staff might not respond well to that, or some of my team might not respond well to that, so I can slow down the way I speak. I can give um have meetings and I can give notes afterwards about what I'm asking for so that people don't have to rely on maybe working memory that was distracted by somebody chewing beside them or beside a person.

14:37 If as an organization owner, I know what the difficulties are, what are the options to help manage those? I can then work out what I can actually do to try and make my workplace safer and more accommodating for the person in front of me. So, pardon me, um, there was another little bit of uh information I was going to refer to, but I'm running a little short on time, so I might skip over that one.

15:03 What? Sorry, that was a lovely little brain part there. Um, disclosure rates versus support rates. So I I will just briefly touch on that bit of research. I won't go into the numbers, but not everyone has positive outcomes from actually receiving the accommodations that they seek. Um I will look at numbers.

15:23 Pardon me. Uh no, I won't. So some people found that their accommodations were met, some people found that they were partially met, some people found that they weren't met at all, some people had to wait quite a long time, and others had to pay for the accommodations themselves. So it is a really a mixed bag, and each person needs to have a look at the setting that they're in and work out am I likely to get, or is it, you know, is it worthwhile for me to seek these accommodations?

15:51 Uh, because that's kind of the benefit that uh is likely to balance up against the costs, the energy, the anxiety of self-disclosure and sharing my identity and inviting people into it. So if you've shared your identity and sought accommodations and nothing's improved, that is a documented pattern. It's not about you doing it wrong.

16:13 It is uh probably humans just being humans, being something in nature that takes the path of least resistance. And I'm sorry that you had that experience, but it's not about you. It's very much about the environment that you're in and also the resources that that environment may or may not have. So everything so far has really been talking about autistic disclosure or neurodivergent employees as a lump.

16:39 There is not a significant amount of research that teases out ADHD and extremely limited as always about Audi HD. So if you're a PhD student prospectively thinking about projects, please consider doing a project in the Aud space, uh both qualitative and quantitative. Nice sell there for a university near you.

16:58 Um, all right, so the Aud gap is the Aud gap. There is uh not a lot of research out there at all. Um, least of all the quantitative experimental type research, where we can draw solid statements out of the research that's not specific to an individual's lived experience and thematic analysis of that.

17:20 And for those of us watching on video, I just waved a magic wand and here's a costume change. Uh so I guess one of the things that we can ask ourselves now is what's the cost-benefit analysis and what are the considerations there? So if I'm seeking disclosure, I beg your pardon, if I'm disclosing and seeking accommodations at work, uh I it's important that I understand what accommodations I need, which justifies why I'm disclosing my identity.

17:49 Pardon me. And knowing what the costs of uh not having accommodations, say in the workplace, and the benefits are, and then the costs of having benefits. Let me try again. The cost of having accommodations, pardon me, and the benefits, lets us know what accommodations we need, but it also allows us to advocate for ourselves.

18:15 So, you know, I mentioned I I am an employer as well as a clinician. So for me, for example, I'm pretty lucky, it's not until I get tired that I really have sensory differences that stand out for me, or until I'm stressed. But let's imagine that I have uh, and this is a real one, uh, the the more overwhelmed or overloaded I am, the less, pardon me, or the more abrupt I become.

18:40 Pardon me, I tends to uh wish that I hadn't had a coffee right before I started to re-record this. Uh, I tends to lose my capacity to put on the pretty mask of social expectations. And so an accommodation that I might have is um, or that I might ask for is simply for people to understand that. Uh I might ask people simply to to recognize that the later in the day it is, the more I'm doing, the more I have to do, the less capacity I have to put on a social mask.

19:13 And so if you come to me at five in the afternoon and that I'm really quite sharp and direct with you, that's not about you, that's about me. And please bear that in mind. Now, what's the cost of that benefit? The cost is uh somebody has to accept that particular uh directness from me. The benefit is um relational stability, uh a reduction in conflict because people recognize that that's a me thing, not a them thing.

19:43 And that's a simple social accommodation that can be made. It might be that the cost is uh if I work with somebody with a trauma history and being really direct is something that triggers their trauma, that cost may actually not be worth the benefit of the relational stress with everybody else. And that needs to be weighed by organizations and workplaces and needs to be considered by us as well.

20:13 We we have a lot that we're dealing with, and this statement isn't to minimize that, but we are not the only people that have a lot to deal with. Everybody has their own level of exigencies, and we just can't be sure that our needs outweigh somebody else's needs in a given environment. But that cost-benefit analysis is really, really important.

20:33 Pardon me. If I have a sensory difference, the uh the accommodation might just be earphones. You know, I always use earphones, uh, it might just be earphones. And if I can say, what's the benefit? If I have earphones in, I'm less distracted. I don't have my misophonia triggered by the person who chews gum beside me, and so I'm better able to be productive, but also my stress is lower and my well-being becomes higher.

21:01 So I can take that to my employer and go, actually, here's the stressful things in the workplace because of my audio difference. Here is the uh the plan that I have in place. Don't come to me with problems, come to me with solutions. Here's my solution to the problem. Uh, the benefits for you are I'm gonna be more productive.

21:20 The benefits for me are my stress is going to be lower, and it's gonna be better relationships because I'm not gonna be really, really annoyed constantly with chore of the gum. And it's now for a time for another quick pause as I chat to somebody else. So once we've done our cost-benefit analysis, we can take that to our employer, our educator, whoever the person is in charge of the environment where we'd like an accommodation.

21:49 Um, and make a really, a really balanced argument for it. So, how do I know what the costs and benefits are? Well, now, signpost. Um We'll have a little look at how we can work out when to disclose and what to disclose in service of seeking accommodations. So for me to get appropriate accommodations in an environment, I need to understand what I need.

22:17 So I would look for, and I'll ask you you at home to take a few minutes and if you have time, uh, for those of us who have a drive for autonomy, uh, please don't feel that it is a demand. But we can take a few moments and consider what are the differences that impact me in an environment. Pardon me. And then we can consider what is the cost to me and to that environment?

22:45 What is the benefit to me and to that environment of an accommodation? And then also what's the accommodation that I can need to manage that particular difference. And then finally, once I know that, what's the environment? What are my differences? How do they impact me functioning in that environment?

23:09 I can then think about the accommodation. What's the accommodation that I need and the costs and benefits of these? And I can take that to my employer and that, or my employer or my educator, my family, my friends, um, and that can inform on where is it most helpful for me to disclose my identity? So those questions are where am I having difficulties that may be related to my differences?

23:39 What's the environment? What are my differences that matter in that environment? And can I manage them? You know, if it's a difference that's manageable, we don't really need to concern ourselves with that. But if it's impacting my stress, my well-being, my work productivity, my learning, my ability to engage in social relationships, then that's something that I probably want to manage in some way.

24:04 And that shouldn't only be on me. So once I know what my differences are, then I can say, how are they affecting my performance, my interaction, my functioning in this environment? So what's the cost? What's the benefit? And then what do I need to get rid of that difficulty, to make that cost of this difference go away?

24:28 And finally, is that worth my time? Is the cost of seeking an accommodation and the accommodation that's received worthwhile for me? And is it worthwhile for the others in that environment? Because I don't want to set myself up to fail and say, hey, I don't earn enough. I would like you to give me a million dollar lottery ticket and then not actually be able to uh to receive that accommodation because my employer doesn't have that resource available.

24:59 And then finally, I can look at that list, I can see what accommodations are worthwhile for me that will manage something and improve not just me and my experience in that environment, but others' experience and in that environment or my contribution to that environment. And then I can say to myself, these are the areas where I want to seek accommodations.

25:21 Therefore, it's worthwhile disclosing my neurodivergent identity and characteristics. Well, friends, I hope that's been helpful this week. Uh, and thank you all again for your patience. I have had a significant amount going on, and I'm not going to wallow in stress disclosure, but there's been a lot going on for me in the last probably six to 12 months, and it's all been catching up with me lately.

25:42 But I really appreciate everybody uh waiting. I've literally received zero complaints about being three or four weeks without a podcast episode, and I will be hopefully getting back on track to weekly episodes again now. So thank you again, friends. Remember, uh, we are flawed like I am, not getting the podcast out for a month, but we are different, not defective.

26:05 We are human, just like everybody else. Thanks very much, friends, and I'll see you next time.

26:17 We've got an audience, a harmony, and self acceptance. It's the audience podcast.