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Redefining Work: Neurodiverse Perspectives · Living Loud and Proud: Disability Conversations

• Phill Rosen Voice Over 00:00:00 Welcome to the Living Loud and Proud Podcast brought to you by Disability Pride Pennsylvania. If you need a link to the transcript for this episode, please visit our accessible website at www.disabilitypridepa.org/podcast. And now, here is your host... Ellen Shimberg 00:00:16 Hi, I'm Ellen Shimberg. Welcome to Disability Pride Pennsylvania's Living Loud and Proud Podcast. We're excited today to bring you representatives from the Neurodiversity Employment Network. We'd also like to thank our sponsors for today's podcast Highmark Wholecare. Now without further ado, let me please introduce today's guests. We have Laura Sibbald. She is the Executive Director of Neurodiversity Employment Network. She's a nationally certified speech and language pathologist and an authentically neurospicy advocate with a deep passion for neurodiversity and the advancement of neuro-inclusive practices. Also welcoming Dan Rothenberg, who is a recruiter and an Integrate Autism Employment Advisors. Andrew Arboe is an autistic self-advocate with professional work background consisting of public and private schools, nonprofits and online programs. Andrew is certified through the International Board of Credentialing and Continuing Education Standards' Autism Certification since August of 2023. And Robert Schmus serves as a licensed therapist and self advocate. Living on the spectrum, he brings his refreshing and insightful perspectives as a clinician and person with autism to his presentations, providing hopeful and helpful information to families and people with autism and other neurodiversities and the people who support them. So without further ado, I'd like to jump right into our conversation. And let me start with, oh, hang on. What we'd really like to start with is we know that sort of neurodiversity, and neurodiversity inclusion is a big topic for employers across the country at this point in time. And what we'd really like to start with is talking about sort of the trends in neuro-inclusive employment and employee experiences. And so one of our first questions is, are, what are some of the emerging trends in neuro-inclusive employment practices? Laura Sibbald 00:02:30 Ellen, I'll start with that one. And I think that's a really great question. Overall, you're seeing, from an employee standpoint, some of the trends starting to see a little bit more disclosure. As you have increased comfortability within the workplace and an increase in neuro-inclusive practices. We can talk a little bit more about disclosure later on, but just to kind of give like a really high level overview, you also are seeing definite focuses in on mental health and trends within the healthcare industry overall, of offering broader ranges of support for their employees, I think you're seeing more of a drive to retain talent within broadly, within a variety of fields, and so employees are that's kind of trickling down into broader benefits practices. We are seeing sometimes a mismatch in what people are aware of is being offered within their employer versus what they're actually, you know, taking advantage of, or what they what they think of when they have benefits. You know, people usually think of like your doctor's appointments or dental appointments, child care. But not always like delving into the mental health side as much and don't realize what, what people are offering. And I think, like, again, from the employee side, what is trending is you're seeing moves away from this idea of like, we have to have a program, like an employee has to fit within a certain program in order to be successful. And employers are starting to kind of shift mindset into this idea of wow, people with disabilities, neurodivergent individuals, can do any job. It's not about the specific program or anything like that. So those are some of the like employee-side trends that I think we've been we've really been seeing lately. Ellen Shimberg 00:04:40 And I think that you touched on, sort of the employee experience with neurodiversity has certainly changed over the past few years. Can you kind of talk to us about some of the challenges and some of the successes that a neurodiverse employee might face in the workplace? Robert Schmus 00:04:58 Well, one thing I can definitely. We say regarding that, I think the, like Laura said there has been like, much like, there's beenmuch improvement with in regards to what neuro-, what neurodivergence, can do. And, you know, I think in the past, they were able, like, it was mostly like, a lot of like, warehouse jobs in the past that that they were like, placed in what, what we like vocational like organizations would put them in, but now it's like we're knowing they can do any, they can do anything based on their interests, which is something I, I advocate for. But I think that the obstacles now are basically being in like, like, adapting to the working environment. What I mean by that is that they there's, like, certain social cues that might that no other persons might not be able to unders understand right away. You know that the interview process would be, can be very like detriment, detrimental for, for certain, for different neurodivergence, and just also like certain ways and the type of supports that they would get within the workplace, I think has been like an obstacle, and that's some however, I do have to say it is an obstacle that is that that people are becoming more aware of. And I think there's many like vocational services and job, job coaches who now understand like that these are, are issues, and are working with employers and employment organizations to really identify that, I that, and come up with strategies to really help with that. Ellen Shimberg 00:06:46 Absolutely, I think that kind of brings us into the next, you know, question that comes up is, you know, and that's sort of about the disclosure. Is about disclosure. And I think, you know, one of the things that our folks who listen in would be curious, you know, what are the factors that influence an individual's decision to disclose their neurodivergence in the workplace. And you know, what would the benefits and the risks of disclosure? And I know that we're not speaking for everybody, but sort of a generic sort of answer, you know, to that would be interesting, I think, for people listening in. And I think the question about disclosure is a big one. Daniel Rothenberg 00:07:20 So I think the benefits and the risks are depending on the company size, the company location, and their overall values. I know that's probably not an easy answer for some people who want a very black and white answer, but it is the truth. For example, at Integrate, we work with Fortune 500 companies often where there's a manager and a manager's manager, and a manager's manager's, manager, all the way up to a CEO. Where, if you're working at a hardware store with 15 people down in Rochester, New York, it's going to be a very different experience. The benefits of disclosing seem to be that, and I say seem to be, I have disclosed the jobs, but they seem to be, hopefully, better accommodations, but also a more understanding work environment by both managers and by your coworkers. That, of course, depends on who you tell. I always say that if you're not going to tell many people to tell a manager as well as someone in HR. But it really is up to the individual, and obviously the risk can be that there is still a stigma around autism and mental health, and that there is a backlash, sometimes based on that, either by someone not being able to, as they would say, stick to the program that a company has, or also just not being very understanding of different communication traits or understanding social cues, as mentioned. I will say that I think the change, and I would say it's probably partially due to COVID, but the change of a lot of people now working hybrid or remote has made that at least a little bit easier. But it really depends on your workplace. And I also think the last thought I would have is that disclos- disclosing to like a manager at a company, it's a lot different than disclosing to a higher up who you might not know. And the reason I'm saying that is, you know, some people, the people who are often making decisions to have autism hiring programs, they are looking at the big picture, which is fantastic, because that is their job. But a manager might not be thinking about it that way, they might be thinking about, what do I need to do to get my 40 hours of work done? It doesn't mean that they're against working with candidates with autism. They just might not always have the right answers, and so that's why it's important to help train and have people really think about this. Laura Sibbald 00:09:39 Yeah, I agree with, with Dan, and definitely, when he talks about, you know, that people want a black and white answer, and I would think it's from any end standpoint, like that's probably the number one question we'll get asked by people is, 'Should I disclose at work?' And it is such a personal experience, and not just for the employee, but for the employer. Or, you know, like, every employer is is different, like Dan said, it could be very small or a huge company. It's a totally different experience. I think you also have from, like, disclosure is a formal process, right? So when you talk about disclosure from an HR standpoint, you're looking at, you know, the policies and procedures for that specific organization, and that can be really intimidating for people too. To, it's like if you don't understand what that procedure is. But there's also disclosure in a different way that's more informal, in feeling a level of comfortability within the workplace where you're able to share with peers and say, 'You know, I'm autistic or I have significant anxiety,' and you're disclosing in a way of helping your team understand who you are and how you work, and operating outside of this, like formal disclosure and formal accommodation request. And I think you see those things also happening. It's a very different experience when you're when you're thinking about it. And what I also think drives that is the employee resource groups that are developed within an organization. So if you're comfortable disclosing a diagnosis or disability, and there is, like a disability employee resource group, or there's an autism employee resource group or anything. It can look very different within organizations, but that provides the sense of community. And you're seeing ERGs more and more occurring within organizations, and I think that that's starting, that's a start almost, of like this change into the idea of neuro-inclusion, which is what NEN really promotes. It's not about like singular disclosure or getting like x accommodation that people think is going to be expensive or it's going to be difficult and all this stuff, when, in the reality, we both know, we all know on this podcast, that the cost of the majority of accommodations is extremely low. But I think what we look at is creating an environment and creating the inclusive space, and that generates that natural disclosure process and that organic process, where, if you're feeling comfortable within an organization, and you're disclosing, whether formally or informally, that's a positive for the organization, that means that you are creating a space that people feel comfortable in. And so I think organizations should look at those metrics like, what are your disclosure metrics? Because there are standards of how many people have certain disabilities, how many people are disabled within the within a community, and if you're seeing like huge differences, then maybe, you know, consider, how can I make this a more inviting process. Ellen Shimberg 00:13:00 Right. And that sort of brings us up to, you know, what are the Ws of disclosure? Daniel Rothenberg 00:13:09 So I kind of use that term for, you know, when you're a kid in school and you hear the who, what, when, why, how, kind of thing. So for everyone's disclosure experience. Again, it is different, but I do have a few guidelines that we usually talk about at Integrate and trainings and stuff, and so I'm kind of going to go off those. As mentioned, the why is to make someone feel more comfortable in the workplace, feel more confident, and gives them also a chance to self-advocate. I think that also needs to be emphasized. A lot of these candidates who are on their first time job. They have had a 504 Plan in high school. They have had an accessibility resource in college. So it is their first time really advocating fully on their own. Now saying that, of course they should and can always talk to friends, family, mentors, career coaches, whoever else that you would like to talk about too about this subject, but then, when I also say that you should disclose before the interview, if you feel comfortable, I always recommend doing it via email. It's simply because it gives both parties a chance to really think out what they want to say, and not being put on the spot if you choose not to disclose before the interview. My only thing is, I would say, do not disclose in between after the interview and getting your contract offer. If you have a contract offer, they already love you, so just you should sign the contract, and then you can disclose after that. Some people might also disclose after working at the company, after they feel a bit more comfortable. As Laura mentioned, there really is no formulaic correct answer. But I will say that another suggestion we give is to not disclose in the interview informally. It just puts people on the spot. And these might be the most neuro-inclusive people in the world, but they don't always know how to respond right away. They might need some time to think, and I think that's really important. And I would also say lastly, that for the why to disclosure, it should be about you. It's not like I'm saying. That's not true, but it also could make a coworker or somebody else feel more comfortable about disclosing if they know it is a neuro-inclusive workplace, Robert Schmus 00:15:23 Yeah, and I have to 100% agree with Daniel, like, it, like, one of the things for me, like, there's, like, also the environment there of, like, for instance, I'm in the counseling world, and so I so after, like, the interview, after I've been offered the job, I would disclose that what I am and just and so, and there's only been one exception where it did not go well. Did not go well. That was when it was, like, a couple years ago, this one job when I disclosed because we were working with the autism population, the supervisor said that people are taken aback that I, that I disclosed being autistic and, but that hasn't happened since. And back then, it was most that there wasn't much like understanding of it. But yeah, I had to agree with Daniel, it's definitely it would also if once you disclose like it would also help another neurodivergent employee just feel comfortable with disclosing. Ellen Shimberg 00:16:32 Right? I think this really sort of comes down to personal choice. And one of the things that I areas I wanted to delve into is sort of the personal choice to disclose and sort of, and the mental health component, you know, associated with that, and know how does meant the mental health play a role in the decision to disclose? Laura Sibbald 00:16:55 I guess I can start us off, unless Rob you wanted to delve into that first. Robert Schmus 00:17:01 Okay, just to, just to clarify what you're asking, How does mental health get involved? Ellen Shimberg 00:17:06 Are there? Yeah, sure. I was saying, Are there specific mental health concerns that neurodiverse individuals may face in the workplace? Robert Schmus 00:17:12 Oh, yeah, absolutely. Like, for example, like, there, there were, there would be times where, for example, there's any sensory issues that a person who and a neurodivergent person might have that could and such as like lights or noises that can be can that can be affecting. Also, you know, if they have issues with social anxiety and during like times where they have to interact with coworkers, like that could be something that to be aware of, you know, having them understand, you know,Okay, well, okay, well, what can help you through this situation? What has helped you through that situation? What can we do to help you in this situation at work? Laura Sibbald 00:18:00 There's a concept. Oh, go ahead, Ellen. I'm sorry. Ellen Shimberg 00:18:04 I think it sort of comes around. And sort of, this, to me, is us, is it two sided? It's not just with regard to the employee disclosure, but, you know, how can employers create an environment for employees who choose to disclose, or not just, you know, it's it. This is a, this is a circular conversation. It's not a one-sided and I'd be interested in sort of, you know, what you would be looking for from someone who's job searching, what, what would be a key, or some of the keys, to, you know, employers, what kind of supportive environment would someone be looking for, where they would feel comfortable, either to disclose or not disclose, because they're going to feel supported regardless? Andrew Arboe 00:18:39 Oh, could I respond? I'm hoping I'm not off-script. Go for mine, because I've they for disclosing, I never actually have to disclose. like when I do, I did job hunting back in 2023, where I currently am a teacher assistant. I was like, I work in the disability like autism field like schools, non- like nonprofits. I usually never like felt the need to disclose, and I hopefully I'm not cutting anyone off. It's sometimes a little tricky of these online spaces, but any of you can let me know that, please be direct. Anyway, I never felt like I need to disclose. And even before I started, I started like a side-hustle, like my brand, where I do a lot of public speaking, like it felt like everyone I talked to schools-wise, they kind of get it. Like they noticed it from my background, because I worked as a job coach one place, I worked at a few autism nonprofits in Connecticut, so it's like, I think people get it, and there's like, one or two places, one or two places I asked. But other than that, it never felt like I was under pressure. You could say that as a testament, and I don't want to overspeak anyone else's experience here. So it could definitely differ for different fields. Ok, yeah, you can go ahead. Laura Sibbald 00:19:55 I think that you raised a good point, Andrew, about like the environment. So, sometimes people within nonprofit educational spaces, there's an inherent... Andrew Arboe 00:20:04 Oh yeah, I have a bunch of stories. Laura Sibbald 00:20:06 Yeah, there's more an inherent understanding. And I think even within, you know, the counseling world, like my background as an SLP, Rob you're a social worker, you know, like those kinds of experiences you have, I think a little more empathy. When Rob was talking, I started thinking about the concept of double empathy. And when you're talking about creating a space, creating an environment, a lot of times we put the onus on a person with a disability to conform to the standards that we set for society. This, this idea that you, the individual, have to change how you are in order to fit in to this, this world, this, this employment organization, whatever it is, this environment. And to, you know, when talking about the sensory differences, and all of those pieces, people come in with an, with a thought process that, 'lights aren't, just aren't that bad. It can't be that bad,' because that's their experience. And so the concept of double empathy is that it's not just on the one person, it's on both parties to have a mutual understanding of what is, maybe the the social expectation, what is the experience for the individual, and how can I better support that experience? Andrew just did a perfect example of it. He said, 'Be direct.' He said he told like that's helpful for him in order to understand when someone should stop or start talking. He said, 'Be direct.' Essentially, tell me. And for societal norms, we don't like doing that. We don't want to say, 'Stop talking now.' Because that feels really uncomfortable. It feels different than what we're supposed to do. So I think, like when you talk about creating an environment, it's double empathy has to be at the like base of that for creating a space where people can be authentic. And when you talk about mental health, that I think is probably Exhibit A of like, not masking at work, and being able to be yourself in your work environment is going to lead you to be a more successful person. So for people who are searching like, 'What am I looking for?' It's an authentic environment. It's the ability to be who you are, and you can, you can get a sense of that even during the interview process, for sure. Andrew Arboe 00:22:46 Yep, yep, I could be really quick, but yeah, two interviews. One was kind of being part of like this, like the school itself, and yep, it taught me everything. It kind of give me, like, a good, like a very good vibe. So interviews can give a big difference. They can definitely ask for that. It's probably education. And the fact that, even if you were to mask, don't know why your mask outside from, you know, like just regular, everyday masking. I tend to think grey-minded of masking, like I feel sometimes it can be reasonable, but if you like do it all the time, then that's pretty bad. And we don't want, and I don't want that for anyone. But, but I feel like a lot of times, education, everyone I work with, like they could tell if someone's masking or not, not, not in a bad way, but they could tell. So again, the environment's a big thing. Ellen Shimberg 00:23:38 Right. Andrew Arboe 00:23:38 And also the field too. Actually, myself? Speaker 1 00:23:42 Yeah, I have to agree as well, like it really is the environment and that collaboration between both parties is needed for success. Andrew Arboe 00:23:51 Yup, communication. Ellen Shimberg 00:23:53 Absolutely, sorry. Daniel Rothenberg 00:23:54 I understand that both parties is needed. But I also would say that as someone who's been working with job seekers. And was a job seeker a good manager, whether that's they don't have they should be neuro-inclusive. I'm not saying they don't have to be, but what I guess I'm saying is a good manager is going to be able to tweak their style for a candidate and be able to pick up things quickly. When we go to companies, we're not telling them redo everything, because that would be A, a complete waste of time for them, and B, it would just be a lot. But what we're telling them is, here are the tweaks that you need to be successful. A good manager, whether they are neurodivergent or neurotypical, or they've worked with neurodivergent candidates or not, they're going to be able to make the tweaks to be successful. And as long as they have an open mind and listen to the candidate, I think they usually will do a good job. Laura Sibbald 00:24:53 Yeah, I love that, Dan, because it's that's about like, that's everyone, right? That's not about you having a disability or not. That's really just about like a manager, listening to who they're working with and understanding the ways that people they're working with are the most successful. So it's that idea of, like, of being an uplifting leader, right? Instead of expecting everyone to conform a certain way. It's a really good point. Ellen Shimberg 00:25:20 Absolutely. One of the things I sort of, and I know we're sort of covering a very, very broad spectrum of topics, and I because there's just so much to talk about, and that's Autistic Burnout. And I been told it's different than for those non neurodivergent folks' burnout. If you could sort of help educate, because I wasn't, you know, to me, burnout is, you know, burnout. And so I'd love to learn a little bit more about more about the difference of what Autistic Burnout looks like. Speaker 1 00:25:46 Yeah. So do you mind if I go first, because I have to leave in a few minutes? Andrew Arboe 00:25:52 Oh, yeah. Go for it. Robert Schmus 00:25:54 All right. So Autistic Burnout is, is that when we when we're given so much information, and it's like so much things, and to be in like, certain situations, that would make us kind of like overload, like overload of our senses, overload in social situations. Now, like you said, everybody, every person, is different when it comes to this. But, like, it's but for me, for example, like being in that situation socially, like, it gets too much like, I kind of lo- digress in certain skills, I get very like, kind of overwhelmed with doing, even in things that I'm normally am proficient with. And to help with that, I just need some time, space for myself, like do something that will calm myself down and to be. And it can, like that overload can, is serious, and it's that's why you have to utilize your self-care with that. Ellen Shimberg 00:26:53 Do you have any and I, and I think that everybody listening and those having the conversation aren't saying that. You know this, it doesn't look the same for everybody, but are there some sort of general strategies that can help individuals with autism manage and prevent burnout? Andrew Arboe 00:27:08 I can answer, oh, one or two I can be. I can go quick. For me, and this probably is a very, very personal preference, some self time outside of, outside I guess job stuff, and also coffee for me, this helps with focus. I don't encourage, like, over-drinking of coffee, or, you know, like, all the substances and all that, but coffee helps me stay focused. And, yeah, being calm too, which is weird, like I can even, I can even have at nine o'clock and I did that for a two-hour exam, and it kept me focused for it, it was timed. It was kind of dumb, but, but that kind of helps me out. Ellen Shimberg 00:27:47 Right. Right. I think, to me, the question sort of this, you know, if you want, you know it, this is sort of where it becomes, you know, do we disclose or not disclose? And if we don't disclose, and then we're sort of experiencing burnout, and we now sort of circle back and say, 'Hey, by the way, I didn't tell you this before, but...' and so I think that sort of becomes, you can see where this becomes, 'Do I just disclose or not? And then how do I manage it if I haven't? Because now folks don't know and maybe don't understand what I'm going through.' And I think finding the right person to be able to sort of be an ally on the jobsite, perhaps, is helpful, but yeah, so, you know, you know, obviously we are. We have our own self-advocates, but you know, how can we do better jobs at advocating for ourselves and our needs in the workplace? And I think part of it is disclosure and you know and finding you know, and self advocacy, and then allyship and and how can we do a better job of that for ourselves at work? Robert Schmus 00:28:52 I'm sorry I have to get going now. Ellen Shimberg 00:28:56 Thanks for being here. Robert Schmus 00:28:57 All right, thank you so much. Laura Sibbald 00:28:59 Thanks, Rob. Andrew Arboe 00:29:00 Good seeing you. Thank you. Laura Sibbald 00:29:02 So Ellen, you, you talked about, you know, the importance of self-advocacy. And I think prior to self-advocacy, there's a step that is frequently missed. We talk about how people have to be good self-advocates, and what that requires is a level of self-awareness and being able to identify the things that work well for you, and the tools to be able to actually do those things. For me, the burnout comes. You know, when you have you've got layer upon layer upon layer of things to do. And the way that my brain works, I work at 1,000% or like 30%. It's really very much one or the other. And so I've learned that I need to schedule myself a certain way in order to take advantage of that. The problem is that when you tell someone who's neurodivergent like, 'Make sure you plan to have breaks,' and you are someone who's not good at, you know, executive function, and you're struggling with making those plans that, you know, it almost adds this additional stress that then contributes to your to your burnout. So I think, you know, there's a lot of people that work on, you know, supporting students and in K-12, and that are building certain skills and are trying to increase self-awareness, and then job coaches, when you're coming out and you're trying there too, I think there's a tendency to kind of say, 'Well, I think this works for me, so maybe it'll work for you,' but at this base level of self awareness of what actually works for the individual. I think that's really important. And the other piece of that is that society also tells you what's okay and what's not okay, and so if you're someone who needs, you know, to rock or to move, society has told us that that's that's not appropriate behavior for the workplace for some reason that I don't know. I don't know why, but that's been kind of what's been stated, that's just not appropriate. So then you're in a position of, 'I know that this is what helps me, but I'm afraid to do it, or I don't feel comfortable doing it.' So I think that there's the allyship part is there as well, and someone saying, like, 'If that helps them, it doesn't bother me. Like, it's fine that that my co worker needs to do this, or that not everyone is is being given the same work structure. Like, maybe I work really well at eight, eight o'clock at night, and I need to, you know, really get into some tasks at that time, but my co worker works really well at 5 AM.' You know, that's, that's, I think, where the other piece is. Ellen Shimberg 00:32:09 Right. And I think that we had talked about, I think the great thing about COVID is it sort of presented us a new way of working, a new world of working. And as someone who's clearly significantly older than everybody else, on this podcast, what I can tell you is it took me a long time to realize my neurodivergence and my ADHD and how I do things, and I have a tendency to say yes to everything, 'Yes, I'll do that, yes, I'll do that, yes. I'll do that, because I don't want to be...' then what happens now I'm overloaded, and what happens when I'm overloaded, I completely shut down. Now nothing gets done. Now I have anxiety because nothing's getting done. And I can tell you that sort of moving forward into the world that we're in today. A couple of weeks ago, I was in I went to my boss and I said, 'I'm just having a really bad day. And if you guys could just sort of be patient with me, I'd appreciate it.' And I'm not sure that's something I could have said to an employer 10 years ago. I think we spent a lot of time masking and trying to be a part of and to fit in, and then that becomes very isolating. I found being able to tell somebody I'm having a bad day and I'm not going to be at my best, freeing. It took the work still needed to get done, but that sort of level of pressure and people, I didn't need any kind of accommodations, but it felt good to disclose in a way that I hadn't been able to do before. And I'm wondering if those folks you know, to me, that's why it and to have an ally at work. And I do have some questions about finding an ally at work and finding someone that you're comfortable sort of sharing those experiences with, especially if you're in an environment where maybe management is is not as as tolerant, as as unaccepting as you would like or need it to be. And so I think love to hear about, sort of finding an ally at work to to share these experiences with. Daniel Rothenberg 00:33:48 Well, just before we go on, I think one thing to add to is a lot of people think autism, autism, and the truth is, like these things are not individually bundled, right? Like, if you have autism and anxiety and depression, it's not like you can just have symptoms for anxiety or for depression or for autism, they are all mixed together and a bundled deal. I guess going on to the ally question, part of what I've learned is that there's a time and place for things at work, you know, there's a time where you're serious, there are times where you can crack jokes and have more fun, and having an ally can be something that's really helpful. It also is important to realize that, obviously they can't take on your whole life, otherwise they will be overwhelmed and burnt out. But it is important to find someone, and while someone in the workplace is great, I also think it's important to rely on whatever support system you have outside the workplace as well, family, friends, counselor, therapist, whoever else you have outside the workplace that I'm not remembering names of. And so I think that it is important to have a balance of when I go to someone to lean on them at work, it's usually about work, right? Like, I'm not saying I'll never tell someone something personal about my life. I do actually, I did that today, but it's something that I feel like and maybe this is my autism, right? So we all have different methods of coping with this, which I think is important to emphasize, but keeping it divided. Where my work people, I'm there when I need help for work, and that doesn't mean I can't be friendly with them. That doesn't mean I can't talk to them about the football game that happened last week or the issue I had going on, personally, but it does mean that there are boundaries set to an extent so that your ally can be very helpful and not feel burnt out themselves. Ellen Shimberg 00:35:49 Absolutely. How can, how can we create more inclusive and, and an understanding workplace culture? I think we've made some progress, but I think there's still work to be done. I'm looking to you guys as sort of the lead in, sort of, you know, how do you guys work with employers? You know, where I can see progress on, you know, I'm not, you know, having been in the workplace for an exceptionally long time, change, it's easy to look back when you're in the middle of it. Maybe it doesn't appear as readily, but how are where are we on sort of the scale of having employers really understand neurodivergence and accommodations and what what still needs to be done to really make sure workplaces are inclusive cultures. Daniel Rothenberg 00:36:35 I'm glad I wasn't on camera for that, given I just gave kind of a grimacing face. I think people need to emphasize, or realize, too, that autism and Judy Singer coined the term neurodivergence less than 30 years ago. This is not something we have been working on for 50 years. This is not something we've worked on for 100 years. This is 30-40, years in the making. Now there might be some people who have said, 'I've been working on this since the 70s.' That's great, and I really appreciate all the work they do. I mean more at an institutionalized level, this is something, at a college level, autism programs are really just starting to pop up. They're not they haven't been around for 40 years, except for, I believe the University of Arizona has had one for a long time. I think the biggest emphasis for me, and you'll hear me say this, and my boss would probably laugh if she heard me, because she's the one who told me this is, there's so much of an importance of having, and I've said this already on this but having managers well trained, understanding, yet they are the ones working with the candidates every day. It is, they are the ones that are helping them through problems, professionally and personally. If they are well trained, it is going to make everyone else more comfortable, because they will be a calmer work environment. And so I understand, and I actually gave a presentation once about how I said it's important start at the top, and obviously having CEOs and COOs and all the O's well trained is really impertinent. Ellen Shimberg 00:38:03 I'm an O. Daniel Rothenberg 00:38:05 But they're also not down there on a daily basis. They're not on the line, as you would say, or in the trenches. I don't really want to compare employment to war, but I guess I just did. And so I think it's important to emphasize that we need training at all levels, and we really need people to just be, to think about it a little bit. It doesn't have to be, as I said, these ginormous changes. But with that said, I still think there's a lot of work to do. I still think there's a lot of work to do, suspec-, especially in the nonprofit world, especially in the smaller companies, it's easy for a tech firm that's in Silicon Valley and has a gorgeous office on a gorgeous piece of land to say, 'Oh, well, we're going to start an autism hiring program.' Whoop dee doo, you not most places are not Silicon Valley tech firms. So to make an education for anybody, whether you're working at a restaurant or a hardware store or Silicon Valley, I feel that is where we need the most work. Andrew Arboe 00:39:11 Thank you. Ellen Shimberg 00:39:13 Yeah, and I think from the top down, and we're not including, you know, I'm saying, and the reason why I bring this up is that, you know, tend, we tend to put a whole bunch of folks, like minded folks, in the same room. We all talk the same language. We all use the same buzzwords, and then from somebody who isn't part of that comes in and they're completely lost. So if policy comes from the top down and doesn't really include those folks who are still sort of right in the in the trenches, and I'll use your word, I use the same thing, then the policy is not really going to be effective. Because you haven't really taken into consideration day to day activities, and the higher are, you are up the food chain, the farther you are removed from what happens on a day to day. So I agree with you that sort of this, it does need to come from the top down in terms of how policy is enforced. And enforced in the best sense of the word and followed. But I think that how the policy is written and how it's in for played out to employees needs to come from the bottom up. It needs to come from those folks who are actually doing the work. And I'm curious how much of that actually happens when organizations are putting policy together. Are we really bringing all the folks involved together? Do we have a bunch of top level managers saying here's what we're going to do for our staff without actually taking into consideration what the staff's needs might actually be? Daniel Rothenberg 00:40:28 I think that's something similar at the NEN conference or event I did in April, which is that we need higher ups actually be hearing the stories and experiences of their employees. It's easy to say, 'Well, we have 400 I don't think any place has 400 we have 200 neurodivergent employees, and they're all hitting their numbers.' That doesn't mean they're doing great personally. That doesn't mean they're doing great at work. That doesn't mean they're having great experiences communicating with other people, and that doesn't mean that they're going to be retainable. So I think it's important to realize that we, and especially like people like Laura and Andrew and myself, who basically are talking about this every day, where, if you use the word neuro-inclusion, everybody you ask is going to know what it means. Ellen Shimberg 00:41:17 Right. Daniel Rothenberg 00:41:17 In the real world, and I'm not saying, in the world outside of the neurodiversity bubble, that's not how it works. Laura Sibbald 00:41:26 And I think what's also interesting, and this, it's so like, this whole thing is so nuanced, which is why I think it becomes so complicated, is you have, like, really well intentioned, like, we're gonna do this program, or we're gonna do this thing, and it's gonna be great. It's gonna be awesome. And when you don't really drill down into the, like you said, the employee experience, and what exactly that looks like on a day to day basis, it does become too abstract. Now, one thing that I thought I was at, I was at the Mainline Chamber of Commerce DEIB Forum last week, and the speaker Rosangely, she was, she's head of their kind of DEI efforts within Mainline, within Mainline Health. And she added an R into their DEI efforts. And the R was for respect. And I thought that that was actually a really brilliant way of taking a concept that everybody understands, putting it into a mission of a very large, multifaceted organization, and making it somewhat tangible, so that you're not just talking about inclusion or equity practices, which, for whatever reason, some people just really respond negatively to. But using a term like respect, everybody can relate to, wanting to be respected in the workplace and having a level of respect for your colleagues and co workers. And I really loved that. I love that they kind of embrace the use of that term to bring in, like, 'Why is this important? Why is this part of our mission and part of our culture? It's because we do strive to have these respectful relationships.' So that that was a really cool way of, like, top down, like, kind of taking the the mission idea and moving it down. I think the other part, you know, and, and this is, this is just society in general. I think we tend to have these big pendulum swings of like, 'Oh, we're doing, like, we're gonna do all the things.' And so you had in tech. You had a lot, a lot, a lot of, you know, neurodiversity at work, autism at work, like, a high interest in that. And it's wonderful. It's great. It generated, you know, job opportunities, etc. But then you got this buzzword of productivity, you know, where we've got these really, really productive autistic employees, and look at all the great work that they're doing. And so autism at work became sellable because of this idea of, it's productive, you know, going into that the business language we've got ROI you know, we're going to have that really strong return on investment. And I don't criticize that as a metric of like, businesses need to be successful. They they need to, you know, have something that's that's profitable. You need to have those concepts. But I think sometimes, when you sway only into one realm, if you're thinking. So this is a way to improve productivity, and that's why I'm going to do it. You're, you're setting yourself up to not have a space that's that's inclusive for your employees. It's and that's why, like, we just hammer it again and again and again. It's about inclusion for all. Like, everyone benefits from clear conversations with their managers about what they need, what they do well, what they don't do well. And that's not even from a disability standpoint. I'm I'm not a detail oriented person. I struggle with that, so I need to have someone work with me and say, 'Hey, can you read this for like, the specifics, because I know that I'm missing something.' And to Dan's point, a good manager is going to recognize that in their employees. And it's not about me, you know, being neurodivergent or not being neurodivergent, it's just how I work. And so I think the less that we are so consumed with this idea of labeling that we're doing this program or this process and we see it for what it is, and just hiring good people, then you're setting yourself up in a much better way. Ellen Shimberg 00:46:12 Right, and I that was sort of exactly to the point that I was making. Is that a good you know, whether you identify as neurodivergent or not, each of us has different learning styles, different ways of accomplishing our work. And you're right, a good manager is gonna be able to say, 'Ellen does it this way. Laura does it this way. Andrew does it this way. At the end of the day, we're a team, and collectively, we work together for a positive outcome.' One of the things I want to ask us, in particular the DI, DEI is, as you know, there's been a big push back. A lot of companies are now pulling DEI initiatives, and I'm wondering about the impact on your work and what that might look like, as you see, you know, it's a huge trend for well now. So I think that in the DEI conversation, I think people sort of saw it as a one siloed DEI, and that we sort of forgot that folks with disabilities fell under also the DEI umbrella. And now, with the pushback a lot of companies not doing it, how is that impacting the work that that you guys are trying to, you know, Neurodiversity Employment Network is doing? Laura Sibbald 00:47:05 That's a really interesting question, because while you're seeing this kind of backlash against DEI or it kind of being reframed, I'll say reframed as inclusive culture, a little bit, you're seeing the removal of some of the higher level C suite level positions because disability was never part of that discussion to begin with. I think that we are not experiencing the same backlash that you're seeing in some of the broader DEI realms. So from a neurodiversity standpoint, there's still, like, a very high level of interest. And how do I...there's a like, there's untapped potential, and that's, I think, what's interesting for, you know, organizations that are trying to hire good people. They're doing all sorts of things that are trying to find the best candidate, right. And when you hear that there's like an untapped pool that maybe people have overlooked, you're still getting high levels of interest there, and starting the conversations about what it means to have an inclusive space and starting to help people understand the difference between that like. Right from the beginning, I said accommodations and inclusive practices are two, like, separate things there you can not worry about like, and accommodations are important, of course, we want people to request and advocate, but organizations get scared of this idea of people requesting more and more accommodations, not realizing that one, accommodations are not very cost, heavy, typically, not all. A lot of them are free. But it's not about accommodations. It's about the whole workspace overall. So I would say, from that standpoint, like there is a little bit of, we're a little bit insulated from that backlash, though, what you have to be careful of, and I think this is with with any kind of social justice movement of what's considered performative allyship, right, the people who are saying one thing but doing something else. And so for any end, you know, we welcome all organizations. We want people who have an interest, who are curious, who want to know more, to take action like we want you to join Neurodiversity Employment Network. We want you to be part of it, but know that we're coming from a space where we want you to move from education to like, actionable things, like actually having the jobs. And so that's what we're trying to to, what's the word I want to use, like, provide our members with those resources and with those tools. So, and I'm sure, Ellen, you deal with this as well, with a performative allyship. Ellen Shimberg 00:50:19 Right. Laura Sibbald 00:50:19 And, you know, like, I think that's like every movement that's you have a little bit of that, and it's, how do you leverage that within your organization? Ellen Shimberg 00:50:31 Andrew, I'm going to come back to you because I have a question that I think would be, is that, how do neurodiverse individuals sort of navigate the social nuances of a workplace and kind of maintain a healthy work life balance? Andrew Arboe 00:50:47 It's big, and this is actually something I've been working on for the last year and a half. And I won't mention, like, any company names and all that just I had, I had, like, several changes during 2022 with a place that I initially worked at was really good, and then eventually it just got sketchy, and that the kind of the whole work and the whole work and family side, like the balance wasn't really there, like I spent, spending way more time than I should have at the office trying to, like, fix something. I was full time, and I was also was doing, like, a program, program, and it wasn't working, like it was just a lot of, a lot of things going on there, and and the person, guess, technically, would be the manager, or, like the founder was someone I thought was a friend, but really wasn't, really wasn't. And it just kind of caused a lot of troubles when things went under and I was kind of laid off in the place years ago. It's still kind of we use little bit of bitter taste and then provide me with the kind of lessons of like spending enough time and keeping certain keeping things at work and all that. And that's actually one of the things I still haven't actually friended one of my in, one of my current employers on Facebook. I just want to make sure I seriously doubt, I doubt to be anything that guy comes up, but it's like, I want to have that boundary, like, I guess, until I, like, leave the place at some random point, like, I'm just won't accept, like, the friend request, just kind of like, having that, because I don't want the thing to happen again, and I want to kind of work more on this boundaries over time. Ellen Shimberg 00:52:29 Establishing boundaries. I think, are difficult for a lot of us. Andrew Arboe 00:52:33 Yep, I'm still learning. I'm still always double-checking everyone I talk to. Ellen Shimberg 00:52:38 Right, the problem with boundaries, in particular, after the pandemic was once, we got used to this format for communications. The lines of work hours became blurred, you know, so all of a sudden you would walk out the door at five o'clock, your day was done. Now, in this new format, it's not unusual to get texts or emails after typical work hours or on weekends, and I think establishing boundaries is really important. But I also understand, you know, how do you tell your employer no? And how do we support folks in sort of being able to say 'No, this, I this is not appropriate. Or no, I will not be managing that, you know, after work hours.' And are we working with employers to talk about those kind of boundary settings, not just for our neurodivergent folks, but I think, and in general, but I have a tendency, and I've seen sort of the taking advantage of folks with neurodivergence, because I think there's a misguided under- belief that we the rules are not necessarily the same for everybody. And I think that there's, you know, we've certainly seen those folks. We will ask one person, two people, same job title, two different sets of expectations, and how do we make sure that our neurodivergent folks aren't saying yes when they really mean no? And how do we encourage navigating those nuances in the workplace? And that goes back to sort of, how are you an advocate for yourself? And how do you find allies within the workplace to help support you when you're going to make decisions that perhaps are not comfortable or easy to add, you know, to to ask for we're so we can say we're still working on it. That doesn't have to, I don't, I don't think we're going to leave this podcast with, okay, oh my goodness, we've just solved all the problems in the workplace. Andrew Arboe 00:54:20 Gonna take years. Definitely gonna take years and see if there's anything else I want to add... Laura Sibbald 00:54:27 While you're looking Andrew, I you know, I think... Andrew Arboe 00:54:30 You can go ahead. I wait until after you finish. Laura Sibbald 00:54:32 Okay, I think also the idea of hidden curriculum. When you think, how do you like, how boundary setting, a little bit like how what is the expectation? There's always like a written expectation, and then there's like a side expectation. There's like the unsaid and that is really harmful to people that need something literal and are told, you know. So, well, I did this but, and I did it the way you said, but I still somehow didn't meet your expectation. So I think the clarity on that is really important. Of hidden curriculum. Andrew Arboe 00:55:12 Oh, yes, yes. Laura Sibbald 00:55:13 And understanding, you know, are you a workplace that everyone goes to lunch together? Is everyone sitting at their desks. Like, do people have meetings on Friday afternoons? Do they not? Is it only a summer thing? Like, what? What are some of those other areas where you can, you're giving an impression to people if you don't follow those constraints. And that also can make you feel like, 'Oh, I'm not fitting in. Maybe I feel obligated to do this exercise.' Ellen Shimberg 00:55:47 It's the whole sort of, well, 'that's implied.' Yeah, and, well, 'it may be implied, if you haven't spelled it out for me, that's not really gonna do me much good, it's that other duties as assigned in the in the job description, that's not, you know, helpful.' And you're right, if everybody goes out to lunch, but you're not somebody who wants to go out? Like, how do you navigate those things? And I'm it sort of almost goes back to the onboarding of new staff and employee handbooks, and in understanding that implied thought is great, but implied thought needs to be put into that employee handbook. So I'm very clear on what the expectations are, so I think that HR practices also fall under this, not just the folks that we report to, but sort of the company culture in general, and how we make sure that those folks we bring on board really are aware of expectations and also disclosing during the interview process the company culture. This we all go out for Happy Hour on Friday. We all eat lunch together. If that's not who you are, you're that might not be the right, right fit for you, and I think that those kinds of things up front that we typically don't talk about in the interview and onboarding process are things that it's hard to find that out after you've gotten to the job. Andrew Arboe 00:56:51 All right, think I might go back to finish up. Let's see, yeah, like, and also I want to add to the kind of like the ambiguous part is even like, the mental states of everyone, including employee and an employer. I again, won't go and they won't go into details on any of my past people, but one, one that I didn't realize until much later, that mental health was affected in big time, and there was no way of knowing if I, you could kind of tell, you could kind of tell spending more time. But it wasn't really said. When it said that, I realized that was also was kind of rubbbing off on me. So stuff had stuff that you think over time after not being at the place after a while, to kind of see what actually makes sense and actually, really doesn't make any sense. So I think it was a lot more, and that can be to, like, a to- toxic work environment for anyone. One of those, I was a part of. Laura Sibbald 00:57:50 I was part of experience too, like someone who's, you know, we've got all, like, entry, mid and senior level, I would say, here, in the discussion, and and, yeah, you start recognizing and looking back. I love you know you talked about hindsight. That's for sure. Ellen Shimberg 00:58:07 Right. Sure, absolutely, before we finish up, what are some of the key points, and is there anything that we sort of didn't cover, like that you wish I had asked, or that you had that? You say, 'Boy, I really wanted to talk about this, and we didn't. We didn't touch base on it.' This is your sort of opportunity to to jump in with that sort of parting thoughts for those people who are listening, Andrew Arboe 00:58:25 I can probably offer a couple, I know was a lot of talk about, like, different programs and kind of going over just general, general expectations. And I talked to as Laura knows exactly what I'm talking about, some of the stereotype things with just tech jobs and, like, autistic circles especially, that was one of the first things I talked to her about when I joined the advisory board. Because it's like all those autism work programs, most of those, I don't want to group them all, but good part of those don't cover, like all the fields, and it's going to take time. But I kind of always like, I, I tend to think in gray. So like, for me, like, there's not really an autism work program at school, for example, or like, a nonprofit, or like, again, teaching and all that. That kind of makes it awkward me, when I was back in community college looking into being a disability specialist. I got my degree six years ago. AT first I'm like, do I know anyone who's actually in this simmer present, similar field as I am? It took me a while to realize this actually was people that existed in those and there's people I know who like OTs, who are autistic, and a few other people that are older, but they call like, I know nerve, neurodiverse is still used. It's like, or neurodivergent. Okay, there it is. Neuro- neurodivergent. So many terms, but it's one of those that just kind of like either opening the fields or just telling people it's okay to pursue other fields. I just wanna be realistic, you know what, I know, what you could bring in the table, and you know, know the limitations of yourself, it's always good, and I wish there'd be more at-work programs at like, different work fields would be, would be great, I would say education and also arts. There's so many different fields. Like, it's like, again, progress and all that. But... Laura Sibbald 01:00:15 I think there's, you know, to your point. I want people listening to know, like, there are organizations that are doing this well, and at any end, like, that's our job. Like, we connect people. We connect if you're an organization that has an interest in, you know, what we talked about today, and these inclusive practices, and it sounds like something that you really want to get more involved in then, you know, connecting with NEN would be a really valuable resource, because there are groups that that are doing this that, you know, it's not just this pie in the sky idea, oh, we, we're we're trying, and each organization has, like, specific things that they do really well. And so that's why you pair people together. Like, there are certain organizations that do a great job with onboarding, you know, there's onboarding practices, there's providers that do job coaching and all sorts of different things. And so just, we say, like, just start somewhere. Like, just, you can start anywhere, just by by reaching out. There's always people that are, you know, looking for employment opportunities, giving people a chance, and thinking about, it's not about employee fit. It's about employee add. Like, what is an individual adding into your workspace to help you be, to help your thinking, you know, to help you think in a different way, thinking outside the box. There's a great statistics, I think it came out of neuro- neurodiversity in business, and I'm going to use the productivity word, but it was neurodivergent groups, like of people, or neurodiverse groups. I guess it would be, where you had people, maybe with a diagnosis, without a diagnosis, all sorts of different brains were 30% more productive than people who were all like, undia- like thinking one way. So even if you had a group of people with like ADHD working together, that's less productive. Or people who don't have any diagnosis working together. And when you bring all those groups together, autism, ADHD, dyslexia and neurotypical, they're more productive. So it's beneficial. It's good business to do that. Ellen Shimberg 01:02:38 I, my thing at this stage of my career is, I would say happy employees are productive, and I'm sorry to use the productive. Happy employees are employees who come to work. They're they're eager to do their job. They don't, you know, what I'm saying so encouraging and supporting your employees as to the most important thing that we can do. Employee retention matters. High staff turnover is bad for business and bad for morale. And so making sure that we've got the right fit from the beginning, and that our employees feel supported, encouraged and comfortable, ultimately results in long-term employment and and happier, better satisfied employees eager to do more. Please, Laura, give us the information about your website for folks who might want to get in touch. Laura Sibbald 01:03:17 Absolutely, so it's very easy. neurodiversityemploymentnetwork.org, okay, so you can find us there, and you can also email me directly at laura@nenphl.org Ellen Shimberg 01:03:32 Fantastic. I want to thank Laura, Andrew and Robert for their time today. It was excellent having you come and speak with us, and also to Dan. We learned a lot. We know this is part one. There will be a part two to this conversation, because we didn't even scratch the surface, and I know that we have a lot more to talk about. So we look forward to part two of this conversation. And I also want to take this opportunity once again to thank our sponsor Highmark Wholcare, for being the sponsor of today's episode. Phill Rosen Voice Over 01:04:02 Please visit our accessible website@www.disabilitypridepa.org. You can find us on social media @DisabilityPridePA on Facebook, Instagram and TikTok.