Championing Change: Neurodistinct Advocacy At Work With Jenn Grindeland

 

We are seeing a growing awareness of neurodiversity today. Still, there is a long way to go to fully embrace an inclusive workplace for neurodistinct people. Here to help us understand how to better facilitate a neurodistinct advocacy at work is Jennifer Grindeland, a coach and the CEO of The Working Well. Jenn teaches leadership skills designed to support invisible disabilities and neurodiversity in the workplace. In this episode, she talks to Whitney Lauritsen about creating a workplace that supports neurodivergent people where they can set themselves up for success. She also talks about DEIA initiatives such as diversity recruitment and being intentional in our communication. As a multiple brain injury survivor, Jenn has had to relearn how to live her life. She then defines invisible disability, managing symptoms, and knowing your limits. By speaking about her experiences, Jenn is normalizing differences. She distinguishes between disability and difference and reveals why she uses the phrase, “hidden differences.” Jenn also shares tips on asking for what you need, diving into communication tactics, and taking away barriers to making our communities better. It is time we remove implicit biases towards disability that are ingrained in the culture. Let us begin to create positive change together, starting with this conversation.

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Listen to the podcast here

 

Championing Change: Neurodistinct Advocacy At Work With Jenn Grindeland

I met my guest Jenn through a direct outreach on LinkedIn and I was telling her before we started recording how I much prefer those conversations that feel very connected these days. It felt like it was meant for me versus some people who send out a bunch of pitches and messages and there doesn’t feel as much of a connection. It feels more transactional.

The other thing about that message that resonated with me, Jenn, is you had clearly read a little bit about me and from me and you asked me a question. I don’t remember the exact wording at this moment, but you asked what my preferred communication style was. I had posted on LinkedIn about my experience exploring neurodivergence and the different types of communication that work well for me versus others that don’t.

It was so kind and intentional, caring to ask me what would work best. That question led to you being on this show because I could tell that you were very genuine and that you cared about me and have put a lot of care into the readers since then. You work in the world of neurodivergence, neurodiversity specifically within the workplace. It all starts to make sense. You’re modeling what you speak on, what you teach others and that shines through in the simplest forms of communication and helped me lean into getting to know you more, which I’m looking forward to.

I’m so glad that you said that about my message to you because there is a part of me that always wonders, “Is this coming across the way that I intended to?” You had posted on LinkedIn about your neurodivergency and how it impacted your work and your relationships with peers at work. I don’t remember all the details, but I remember how it made me feel. That’s a big takeaway.

We don’t ever normally remember the details of what someone says or their message, but we remember how it makes us feel. I remember thinking, “This person is talking about experiences that I have dedicated my career to helping people with. I have to talk to her. I have to reach out.” I messaged you to say hi and thank you for your post. I looked at your profile and I saw that you were a host. I have been trying to get on more shows to be a guest and I was like, “What a fit. This is amazing.”

It is amazing and it feels so special because I also don’t remember exactly which post that was. I had done a few. I had started dabbling on LinkedIn as an exception to my social media rule, which is not to use social media except for occasional work-related things. After about 4 or 5 months of being off social media, I felt inspired to start using LinkedIn. I went through this phase for probably a few weeks of using LinkedIn every day.

At that time was also, I believe, Autism Awareness Month or Autism Acceptance Month. the terminology has changed a little bit. I thought this could be a good opportunity for me to start posting about my experience learning about my neurodivergence and suspecting that I am autistic. I’m still on that journey of clarifying that. It seems like everything’s pointing to it. I’ve had this desire to advocate for it and spread more awareness.

I started looking at people who were speaking out about their experiences with autism and trying to learn more from others and realizing how vulnerable that feels. It felt vulnerable to start engaging with people around something that I’ve mostly been exploring on my own. I’ve been speaking about it a lot here, but speaking about that on social media felt hard. It still feels vulnerable thinking back to it. I remember wondering. Even though I was trying to advocate for acceptance, I still had this concern that I wouldn’t be accepted if I started to come out as someone with autism.

You’re one of the only people that I had any private communication with about that. To this day, I don’t know how any of that was perceived. I don’t know if people started to view me differently once I started talking about being neurodivergent. I didn’t know if it matters, but there wasn’t a lot of feedback. You stood out in so many ways. I felt supported by someone I had never met before. Essentially a stranger coming to chat with me and connecting with me over something that felt hard to do.

I had a similar experience when I first started being public about my experience as a multiple brain injury survivor and what that looked like and how that affected my relationships in the workplace and personally as well. I can relate too. It’s so hard to put yourself out there and not know how it’s being received and a lot of probably don’t know how to respond to it. That is a lot of the reason that’s why I’m doing the work that I’m doing, educating people about how to talk about these things, particularly in the workplace, so that we can all feel supported by one another.

It's so hard to put yourself out there and not know how it's being received. Share on X

You’re right about that. Certainly, in the research, I was coming across platforms like LinkedIn and yet still in this place of the unknown and vulnerability, as I mentioned. It wasn’t wondering what people I was already connected to on LinkedIn were thinking. It was also starting to feel vulnerable because I was looking for some new clients for my freelance work and I was applying to various job opportunities on LinkedIn and it’s fascinating.

I would love to hear your thoughts on this, Jenn because a lot of companies claim to have a lot of diversity, equity, and inclusion. They’ll put those statements in their job description. In fact, I was looking to see if there were some job opportunities to work in the field of DEIA and I was struggling to find jobs about that because so many companies use DEIA or Diversity Equity and Inclusion in their description even if the job has nothing to do with that.

They’re trying to put it in there. I would find in various job applications that they’ll ask you if you have a disability. I kept wondering, are they asking because they’d be more interested in hiring someone with a disability or is it in some ways working against you? You say, “Yes, I have a disability of neurodivergence,” that’s classified within a disability. If you say that, do you have less chance of getting a job? I’m curious, Jenn, I imagine there’s no easy way to know, which is if it either is true, but are companies now trying to hire truly more people of different diversities, whether that’s racial, economic disabilities, all these other factors to make sure their workforce has all different types of people in it?

There are a few different ways I could go with this question, but I’ll start by saying that there are more diversity recruitment efforts right now than there’s been in the past and there are even neurodiversity recruitment efforts happening in some companies. You’ll see that a little bit more in the tech industry. I don’t know the answer as to if you check that box what that means because it’s different for every company.

There are some that don’t even look at it. There are some that want it for statistics, but only the people who deal with statistics in HR or wherever data analytics deal with that information, and the hiring manager or the team never looks at it. There are some people who want to know that answer because of recruitment efforts. They’re trying to bump their numbers up.

I hope that it wouldn’t work against you. Unfortunately, that’s probably the reality in some places. What I find, though, is that if you look at neurodiversity in the workplace, if you google it real quick, you’ll see that there are recruitment efforts, but you won’t see a lot of retention efforts of how do we support these people once they’re on our team or if they’re already on our team, what can we do to set them up for success? That is what’s missing and that’s what I do. I felt that gap when I was working for an employer.

I had my first brain injury when I was 15 and then I had 2 more in 2018 while I was working for an employer. They were six months apart from one another. I went through it and from my past as a teenager going through this, I knew what to expect but it’s completely different in the workforce. My employer, my team, and my peers didn’t know what to do to support me and I won’t blame them by any means. This isn’t something that’s taught commonly.

Even generic leadership and communication skills aren’t taught very often in the workplace, which could have solved a lot of these problems. I teach those skills within the framework of invisible disabilities in the workplace. How can we support these? How can we use these skills knowing that we have people in our workplace that will benefit in this way?

 

I’m so grateful for that work, especially now that I have more awareness about myself and others because this is a new journey for me. I’m discovering a lot of people later in life, various ages will discover something pretty big about themselves. They didn’t know. It’s common for late-in-life diagnosis, this term you could use especially with autism and especially within women. That’s been a comforting thing for me to know, coming across various books and articles.

This is also one of the reasons I was posting on LinkedIn. It was to not only come out about that publicly for myself but also say to others, I’m one of them too in case there’s someone looking at me and thinking, “Because Whitney stated this, now I might look into it for myself or I feel I can say something about it.” There’s that advocacy element of it.

Also, through that journey of learning this about myself, I am recognizing how much ignorance I have, especially in the workplace. I keep looking back on my whole work experience and thinking, “What if I had had different accommodations?” There are times I was fired and I wonder, was I fired because I didn’t understand something and I wasn’t being communicated with properly? Was I fired because they thought that I was weird or worked differently than others?

 

I didn’t fit into some box. Because I didn’t seem to fit in there, they wanted to let me go. They wanted to get rid of me. That’s so sad to say that second statement, not for myself, but I imagine that happens quite frequently with a lack of awareness on both ends or one end because you have to learn how to advocate for yourself. What if you’re like me and didn’t know?

You can advocate for yourself. You might think something’s wrong with you or you’re not doing a good job. That’s a common thing for people that discover it later in life like myself, which is hitting that wall of burnout and that’s when you start to discover why you got burned out in the first place. For a lot of people, that leads them to the road of, “I’m burning out because I’m trying to operate in a world that thinks and acts very differently than me.” I imagine you come across this all the time.

People are trying to mask their symptoms to fit into a working world that’s not designed for them and we call that neurotypical. That’s the opposite of neurodivergent, what we would consider to be “normal.” Whereas statistics show that there are more people who are neurodivergent than neurotypical. Isn’t that crazy?

People are trying to mask symptoms to fit into a working world that isn't designed for them. Share on X

I came across this statistic. I don’t have the exact numbers but it was it listed how many people out of 100 have autism or ADHD or dyslexia and went through all of them and then at the end of it, it was 90-something out of 100. There are comorbidities. Someone might be in more than one category and usually, that’s common. We’re not looking at actually 90%, but it makes you wonder if it’s probably more than 50 with all of the crossover.

It’s so interesting that we have designed a working world for what someone determined to be typical, likely your White male. Even if you look at gender, women think and operate work differently at different energy levels. If you add on the fact that our brains operate differently and not only from a gender perspective but also from a neurodiversity perspective, there’s so much variance there. We cannot assume that everybody will have a brain that works the same because that’s ridiculous.

In the workplace, we are always hearing organizations say, “We want out-of-the-box thinkers,” but Whitney, you shared that you felt you were let go because you were out of the box. It’s a false dichotomy. It’s like, “Are we saying these things because we actually want it or are we saying them because we think we’re supposed to, but we don’t actually truly, at the heart of our core, know what it means to work that way?”

That’s often the case. I don’t think that people have poor intentions. There’s a lack of awareness. We say we want to be inclusive, but do we know what that means in all different areas? There are so many levels to DEI work and you mentioned that at the beginning and I do want to share the statistic that that is interesting.

We say we want to be inclusive, but do we really know what that means? Share on X

A report to Harvard Business Review shared that 90% of the companies that they talked to in the study claim that they prioritize DEI initiatives, but only 4% include disability in those initiatives. It’s a crazy low percentage but a high percentage of people who don’t. Ninety-six percent of companies don’t consider disability in their DEI initiatives. Whereas if I want to throw more statistics at you, there are studies that show that 30% or more, like I shared, of the US workforce is disabled.

If you compare those statistics, we are leaving out a lot of people in our DEI efforts and they might have other forms of diversity, they might be a different color of skin or come from a different socioeconomic status, but they might also be neurodivergent. They might be getting these inclusive efforts in one category, but they might not feel fully seen because this other part is missing.

That phrase fully seen is an interesting one. A huge thing for me in my life has been feeling misunderstood. What I’ve learned about masking is you can’t be fully seen if you’re masking because you’re hiding part of yourself. There can be a lot of emotional trauma if you feel like when you show your true self, it’s misunderstood or it’s not accepted. In most jobs I’ve been in, even in the freelance world, I felt I had to mask and/or fit myself into some mold that didn’t feel great.

Now that I’m more aware of that and advocating, it still feels uncomfortable because I am afraid that I’m missing out on a lot whether opportunities to make more money. I have felt that way for a long time. I’ve seen friends of mine achieve all sorts of things, especially career and financial success. I felt like, “I’m not willing. I don’t want to do those things or I don’t feel I can,” and I didn’t know why I wasn’t willing or able to do some things and that was a big part of my journey.

Sometime in 2019 or 2020 when I first started to look into ADHD way before I looked into autism, I was noticing some things about myself. I looked them up and saw that they were characteristics of ADHD. The first thing I looked up was rejection-sensitive dysphoria. I remember it hitting home. This is describing me, but I don’t seem to fit into a lot of the other ADHD characteristics.

I kept researching it and there was suddenly this moment of realizing that there was something there. That’s when I first started to learn about neurodivergence and thought, “I feel I’m on the right path.” It seemed to explain why there were certain things I didn’t feel capable of doing. That, to me, sounds like part of the definition of a disability.

I would love to clarify it with you, Jenn. What is a disability? What is an invisible disability specifically and does this tie into things like your brain injury? Given the neuro side of it, as we’re talking about when your brain doesn’t seem to be working, it seems very different from what I grew up thinking of a disability. I was thinking more of a physical disability. When it came to not being able to walk or not being able to use my limbs, I didn’t learn a lot about mental-related disabilities, especially not invisible disabilities. I didn’t know what they were until recently. I’d love to learn more from you about what that means and broaden the definitions of disability so others can understand.

Thank you for asking that. I have had a lot of people share with me that invisible disability is a new term to them. It surprises me every time because I forget that I’ve been dealing with this for more than half my life. It’s so common to me that I forget that I’m in my own little bubble here and others want to learn about it sometimes for the first time.

Disability is a tough word. There’s the medical definition, the Americans with Disability Act definition, but then it’s also your personal definition. What does it mean to you? I don’t consider myself disabled but I do fit that category in the medical description. The ADA defines disability as a chronic condition that impacts your daily living functions to the point of making it difficult to do your daily living functions.

When I had my first brain injury when I was fifteen, that was so true. I had to completely relearn how to live my life because I could not do it the way that I had the first half of my life. If I get into specifics, for me, that looked like social settings were so different I could not be around loud music. You mentioned before we started recording, you’re sensitive to loud noises. Me too.

I have earplugs right here next to me on my desk that I wear all the time when I’m working, even at home alone, because the outside noises of cars driving by and stuff are distracting for me. Loud noises were an issue. I acquired an eye disorder called convergence insufficiency. Basically, what that means is if we look at each of our eyes, they each see their own image and they work together to cross over.

They merge and converge over one another to see one image. If you put that together with convergence insufficiency, that means that my eyes had a hard time doing that. Anything that requires your eyes your whole life, pretty much if you are someone who uses eyes and you’re someone who is blind, would not fit this category. That was difficult for me to read.

I could not read because while I could physically see the words, I didn’t see double very often. Sometimes I do, but my eyes get tired from trying to do that convergence within seconds. I would try to read a sentence or even a paragraph and I would have a headache and nausea the rest of the day. School was impossible for me. I was a sophomore in high school at the time and I failed out of English class my sophomore year because I could not read.

I tried. It wasn’t for a lack of trying, but my brain wouldn’t allow it to happen. At that time of my life, that qualified as a disability according to the ADA. I learned, though, how to adjust what I was doing. I learned to set timers for myself. I went to a lot of therapies, vision therapy, and things like that to make my eyes stronger. I can’t handle more now, but I know that I need to set timers and stop when that timer goes off. Otherwise, I will pay for it. For example, I was on a flight and I was way past my limits. I knew that I did. I was watching a show on my little phone, which is still a big trigger for me, but I can’t watch shows, not more than 1 or 2 episodes at a time.

I probably watched four and I don’t know. It’s one of those flights where sitting and listening to the babies crying next to you doesn’t sound fun. Usually, I’m fine with that and I feel bad for the parents. That particular flight, I was like, “I don’t want that.” I pushed myself past my limits and then at the end of the flight, I was seeing double for at least an hour. It was bad. People were walking towards me and it was two people. I’m glad that I was with my husband and I didn’t have to be the one to drive home because I wouldn’t have been able to. That’s another instance where at that point in time, I would call it a disability.

In my everyday living when I am able to manage my symptoms, know my limits, and not push myself too far, I wouldn’t call myself disabled, but for the purposes of my work, I do. I want to normalize that these differences are okay to call out and people understand it better when you call it a disability versus calling it a difference. When I work with teams, I use the word hidden differences or phrase hidden differences and I include invisible disabilities, neurodiversity, and chronic illness under that category.

An invisible disability is something that I have. It’s something that you can’t see. No one else on that flight could tell that I was seeing double, but I knew it and I had to communicate that to my husband who I was with so that I could get that support. That’s such a great example of how in the workplace, no one knows what you’re going through. If you don’t say something, you can’t expect to get the level of support that you need unless you’re lucky enough to have a great supervisor who knows how to ask the right questions and then follow through with the answers that you provide.

 

That last part is powerful. An interesting thing that came up for me was hearing about airplane travel. That’s been a journey that has been helpful in me advocating for myself because one place that seems like it’s a lot easier to get accommodations is surprisingly at the airport. I’m curious if you agree with this, Jenn, but I discovered in 2022 that you can get special support through TSA. It’s called TSA Cares.

I started using it and I could not believe how much easier it was for me to get to my plane having support at TSA. I wasn’t fully aware of how incredibly challenging it was for me to go through TSA until I had somebody helping me through it. It almost makes me emotional thinking about it because the before and after are still so vivid for me now.

I also have been using the offer when you board a plane, they allow people with disabilities to get on first. Where this conversation leads me is because you and I both fall into this invisible disability category and because I am still learning about what that means, I felt so, for lack of a better word, vulnerable because I always feel people are looking at me like, “Why is she getting special care? Why does she get to board the plane early?”

On the last flight I took, it was confusing where I was supposed to stand. Jenn, since it sounds like you were on a flight. The one that you shared is recent so it’s probably fresh in your mind too. I don’t know if you do the early boarding but the way it’s set up is confusing because everybody wants to get on the plane quickly or most people do.

Some people don’t care and they’ll sit and wait till the very last minute and then get on the plane. It seems there’s always that rush of people who can’t wait to get on board so they stand up and they’re waiting in the lines and all that. I’m someone who thrives when I have a clear direction. That’s another thing I’ve learned and an accommodation I need, especially at the workplace.

Most workplaces actually do not have great organization or clarity, at least in my work experience. I tend to struggle without that. At the airport, they do a pretty good job except for this. They’ll tell you on airplane websites that if you have a disability, you can go up to the people working at the desk. I don’t think they’re called flight attendants, but they’re gate agents.

They say right on most airline websites. If you have a disability, go up and let the agent know. Most of the times I’ve flown, when I do that, the gate agent seems annoyed and dismissive and they say, “Stand over there.” In my head, I’m thinking, “You didn’t give me clearer instructions. I don’t know what over there means.” On my last flight, I made my best guess at what over there was and I saw this man with a cane. As the boarding was starting, I saw him get up with his cane and he went to get in line and I thought, “Somebody that has a visible disability. I can go stand with him.”

The agents started to get irritated with us and they started saying, “We didn’t say it was time to board,” but I could tell the two of us were trying to indicate to the other passengers that we were disabled so that we could get on the flight before them. We weren’t trying to cut in line. It was this whole awkward thing where because I had an invisible disability and maybe they didn’t even think he was disabled because he had a cane, it was almost like they were irritated with us.

We were trying to advocate for our needs and yet when a person with a wheelchair came over, they got different treatment. It wasn’t a comparison of who deserves better treatment. It was because somebody had a very visible disability, it seemed to me more easily accommodated. I’m wondering if you’ve experienced this, Jenn. Also, I’m sure this type of thing comes up in the workplace. To your point earlier, if you don’t have a very clear stereotypical disability, it might feel harder to be seen as disabled, to be acknowledged, and to get support. It requires you as the person to advocate for yourself on a whole new level.

We’ve been talking about it’s complicated to advocate for yourself. You either might not know what to ask for, you might not even know that you’re disabled yet, you might be afraid, or you might feel vulnerable. I imagine that’s contributing to a lot of suffering in the workplace of people needing something but not getting it because it’s too invisible to be seen and helped.

There’s a lot of the fact that they have been masking it likely for years and so the entire concept of getting support and not having to mask anymore is foreign. That is a big piece of it and of healing that needs to be done first before we can be in that mental state of mind to ask for what we need. Sometimes, like you said, we don’t even know what we need in the workplace. We don’t even know what’s available to us.

There’s a great website that has a lot of different disability accommodations listed. The name of it is AskJAN.org. It is a website that has so many accommodations listed. It’s called A to Z list of accommodations for disabilities and it’s for workplaces to get ideas about how they can accommodate their employees. It’s also great for employees to look at and get ideas of what you can ask for.

It’s cool. It has apps that it recommends that you can give to your employees and as an employee, you can download them yourself. It’s great because that’s a big piece of it is not knowing what to ask for like, “What is appropriate? What’s too far? What am I allowed to ask for? It would be nice if I had this one thing but am I being too needy if I ask for that?”

I encourage all readers, regardless of whether you have a disability, to look at this and see if it’s something you can advocate for yourself. I don’t think self-advocacy is for people who are disabled. It’s for everybody. That’s a big part of what I teach organizations. This work, learning how to communicate with each other within the framework of supporting invisible disabilities will support people with physical disabilities.

 

That is the goal, the original intent, but also, it’ll support people without disabilities. The people who are neurotypical on your team who might have preferences or work better in certain ways or have different communication styles, learning styles, or work styles. This is beneficial for everybody and if we have the courage to advocate for ourselves, it opens up the door for other people at work to advocate for themselves.

If we have the courage to advocate for ourselves, it opens up the door for others to advocate for themselves. Share on X

I would encourage all readers to take a look at that website after the episode or even stop right now. Take a look at it, AskJAN.org. Find one thing that you think you could benefit from and toy around with the idea of asking your employer about it. Maybe you won’t have the courage to ask tomorrow or Monday, but maybe you can think about it and see where that gets you.

I’m going to do that. In fact, I pulled it up as you were speaking and two things came up for me. One was a wave of excitement and relief and a little bit of emotion because every time I see tips like this information advocacy, I feel so grateful for it and I wish I’ve had it my whole life. Also, to your point, I get excited to learn about other people so I can help accommodate them or advocate for them.

Another thing that comes up for me is how I ask for this from my employer or my client, in my case, working freelance, which by the way, I should say is very common. Jenn, I don’t know if you know the statistics, but I would imagine it’s common for a lot of neurodivergent people to work in creative fields because of how their brains work.

The out-of-the-box thinking. You mentioned tech. It’s very common for people to work in tech. In fact, I saw an article that have been meaning to read about people like Elon Musk. I don’t know if he’s ever disclosed neurodivergence, but people have suspected autism for him for a long time. The article was about all these male tech founders and how female neurodivergent workers don’t get nearly as much attention or praise. There seem to be all these associations with people like Elon Musk like, “He’s so brilliant because he is neurodivergent.” Now it seemed cool to be neurodivergent, but are women getting enough of or anything close to that type of attention?

That aside, it’s probably common for people who think and work differently to want to work for themselves or to do something creative. That’s been my path. I’ve worked in creative fields, I’ve worked in tech fields, and I’ve also combined both into my own career. Luckily, I can get a lot of accommodations because I essentially work for myself and am self-employed. I still interact with my clients a lot and there are times that I would like to ask them for something.

I would like to even disclose that I’m neurodivergent, but I don’t feel fully comfortable doing that yet, Jenn, because I don’t know what language to use. I don’t know if it feels appropriate. Of course, it’s appropriate, but that’s part of my old mentality of feeling like it’s too personal. Do they need to know this information about me and are they going to think of me differently? What if I confuse them and what if they think less than me? All these emotions have been coming up during this part of my journey. How do you move through those emotions if you want to get accommodations, but it feels complicated?

It’s hard and it won’t become easy overnight. I can’t tell you how to do it. It becomes easy. I will say a couple of things that help. The first is that it’s not personal. For the other person that you’re talking to, if they respond negatively or if they respond in any way that doesn’t feel like full support, usually, it’s out of confusion and misunderstanding. Given that context, the more we can describe why we need what we need, the easier it is for someone else to understand.

The more we can describe why we need what we need, the easier it is for someone to understand. Share on X

That sometimes can look like sharing your diagnosis. It doesn’t have to look like that if someone isn’t comfortable doing that. It wasn’t something that I flaunted. For a long time, I didn’t share my past with brain injuries until I was affected. I had two injuries while working and I had no choice because I had to miss a lot of work and fill out a lot of paperwork.

Before that, I didn’t ever say anything. I dealt with it and asked for things and honestly, a lot of times, I was declined. I didn’t get the accommodations that I needed because we, as people, are very curious beings. If we don’t know the why behind something, or maybe this is me, we don’t care. If you’re ever told to do this project at work but you don’t agree with it and you don’t understand it, you don’t want to do that project, do you?

This is a communication tactic for everybody. The more we can explain in detail and like you said, you do better when you have detailed instructions. That is applicable for everybody and use that too when you’re communicating to your clients and say whatever feels comfortable to you in your own words. You could say, “I am more successful when I have this. Can you provide this for me or can we have a conversation about how to move towards this way of working or this path?”

That’s a way of saying it without having to say, “I have autism. This is what I need,” because then it makes them feel like it’s their problem versus, “You hired me to do this project for you. I want to do the absolute best job that I can do for you. These are some ways that I’m more successful. Can you help me get there?” They’re like, “Yeah. I want you to do the best job you can do too. Let’s figure out how we can get there together.” Honestly, all of this support that we want to provide to employees and for ourselves and to each other, at the end of the day, it’s so that we can each individually be successful and as a collective be successful.

When we have this support, that’s what happens. We can do bigger and better things for our communities and the projects that we’re working on, which a lot of the projects and missions in business are to create better communities and to create a positive impact in the world. If we can take away barriers to do that, then we’re ultimately making our communities better.

That starts with the internal culture of supporting one another and getting curious not necessarily about the diagnosis or what’s behind the request, but how can we optimize? How can we make this the best outcome that it can be? I don’t encourage people to share their diagnoses unless they feel comfortable doing so. I don’t think it matters, honestly. I don’t think it’s applicable. It can help people understand better, maybe if they are someone who doesn’t have an implicit bias against type and against disabilities, which they might.

Sometimes I might even. Even though this is the work that I do, if I’m being completely honest, it’s something that’s ingrained in the culture that I grew up in and maybe a lot of other people here. One statistic that I like to share is in that same study that talked about 30% of the US workforce being disabled. In that same study, they shared that 3.2% of people share disclosed to their employers what their disability is.

This included visible and invisible disabilities. I’m willing to bet that the majority of that 3.2% was physical visible disabilities because they couldn’t get around not saying something. If you’re in a wheelchair, that’s disclosure right there. Whereas invisible disabilities, I’m guessing that the disclosure rate is a lot lower because they can get away with not ever saying anything. A lot of time when I work with employers. They’ll say, “How can we bump up that disclosure rate?”

I want to stop in my tracks and say, “That’s not the point here,” because you’re trying to bump up your diversity numbers and prove something. I want to take the approach that we’re looking at these differences as humans. These are different people and their brains operate differently. How can we support them? I don’t like using the word disability, but I do in terms of getting people to understand what I’m talking about.

In the medical definition of disability, I wouldn’t call autism, ADHD, or dyslexia disabilities because there’s nothing needing fixing. It’s a difference that is hugely beneficial to companies to champion and support because, like you said, the creativity piece. I don’t know the statistics behind that, but I do hear a lot of people who I talk with say, “I have ADHD or autism.” They work for themselves and/or they’re creative and it’s either because, as you said, they want to work in these particular ways and it’s easier on their own and/or it could be that they didn’t feel they had the support that they needed in the workplace and so they didn’t want to work with other people anymore. It wasn’t worth the headache literally, probably, and metaphorically.

Both seemed to be true for me. It’s an interesting question to reflect back on because working for myself has not been easy. There are still a lot of things to figure out all of the time and I’ve contemplated, “Maybe I want to take a break from working for myself,” but I don’t know if I could do that without accommodation. This conversation is good timing. If I did take on more work or focused on one specific client versus having a number of them, for example, I would want to better understand my needs.

One of them is I tend to deal with a lot of fatigue throughout the day. Something you mentioned earlier, Jenn, that I would love to share in case anyone else can relate to this is you’re bringing up some sad memories to the surface for me, not in a bad way but acknowledging them. I used to work for a big well-known tech company. I won’t disclose who they are, but I’ve talked about them in the past and love my work for this company. I still love this company to this day.

In my specific role at the time, I was working part-time, and I wanted to be in a specific position and I was advocating for it. I was trying to prove myself. You surfaced, Jenn, inadvertently a memory when you were talking about gender because the person who was in charge of this particular team in that company was a man and their entire team were men. I remember him saying to me that he was hesitant to hire me because I was a woman because he was afraid that my female emotions would impact my role.

I was trying to prove I’ve got my emotions under control. Yet, Jenn, that was completely masking because I’m an incredibly emotionally sensitive person. I was trying to mask myself as this strong, capable woman. This was many years ago. I still had a long way to go on my self-awareness journey. No indication, no awareness about neurodivergence at the time whatsoever. I ended up getting this role. I was so excited. I felt so fulfilled. It was awesome in so many ways.

One day, I was having a rough emotional day and I did break down a lot and my emotions were impacting my ability to perform my task. I started crying in front of this man and he was kind at the time, but I remember feeling so embarrassed. It was like I was proving his biases towards female employees in that role right. I felt like I was not only letting myself down, but I was maybe letting the female gender down at that moment. My emotions are impacting me.

Experiences like that, Jenn, drew me more and more towards freelance work. When I’m having a more emotional day, for example, certain parts of my cycle, my menstrual cycle, I’m very emotional. Almost on a complete schedule, on specific days of the month, I can barely work because I am either super irritable, tired, or emotional. It’s completely impacting my work, but that’s part of my biological makeup or that’s part of what’s going on with my particular body. Maybe not every woman’s going to experience it the same way, but whatever’s going on for me at that time, I can’t control that.

To have a career path in which I’m allowed to take the day off, I don’t even have to ask for notice. I don’t have to call in sick. Otherwise, if I worked a traditional 9:00 to 5:00 job, I’d be calling in sick at least once a month because I wouldn’t be fully capable. I don’t know if I am capable now that I’m learning to unmask. I’ve discovered that I don’t thrive in working eight hours straight. I’m someone that can work maybe two hours straight and then I need a break. Most of the jobs I’ve had in the past don’t work like that. They expect you to be always going like an Energizer bunny.

Talking with you, I’m example after example of either bad experiences in the workplace and/or experiences in which I don’t think I’m suited. Now that I have more awareness, I’m wondering if I could ever go back to any 9:00 to 5:00 job or perhaps with the example of that wonderful website, Ask JAN, is there a way in which I could get accommodations and be able to fulfill a job like that? I don’t know.

I don’t know either. It would be some experimentation but also knowing that you’re going into a company that respects and supports your needs is huge. I don’t know the best way to vet companies that way because they will seem like they’ve got the best culture in the world during the interview process to try to lure you in. That’s my vision for however many years down the road.

People like you and I can apply to any job and know that we’ll be supported in that role because it has become so normalized to celebrate these differences in people’s brains and in their bodies. That’s my goal. I hope that we can get there and at this moment in time, I’m trying to help us get there by working with organizations to teach them this stuff.

I’ve alluded to it a little bit, but for the readers, so you understand what I do, I teach leadership skills that support neurodiversity and invisible disabilities in the workplace. A lot of people will assume that means for the managers, but it also includes everybody. I have a Master’s in Organizational Leadership and in that program, I remember years ago, my professor’s drilling it into our heads over and over that leadership is not positional.

Leadership is not the same thing as management. If you want to learn how to be a good manager, get your MBA, but this is a completely different degree where we talk about how to influence and support and inspire people to create positive change together. Anyone can do that. The janitor can do that. We used to call it a Person In Position of Authority, a PIPA. We’re not talking about PIPAs here. We’re talking about everybody.

When I work with organizations, I teach everybody leadership skills and that includes self-advocacy as we’ve talked about. It includes communication, which is huge. It’s the backbone of any relationship. Leadership is a relationship by definition. I talk about hidden differences and energy management, which we do talk about like you said, your cycle and syncing your projects and tasks with your cycle and sharing that with men so that they’re aware.

Also, talking about men’s 24-hour cycle and how we can’t expect men and women to operate in the same way because their energy levels aren’t on the same cycle. It’s funny that you brought that up because I specifically picked to do the interview this day because of my cycle. I knew that I would have a lot of energy and I would be in a social mood, whereas next week, probably not.

 

Knowing that without that shame, because it can feel like there’s a lot of shame tied into that. We still operate under a lot of patriarchal structures. In a way, it doesn’t surprise me that I had that experience, but that showed his ignorance and biases. He needs someone like you. Maybe he still has that mentality. I don’t know what happened to that person, but I was able to see past it and see all the other valuable elements of him. That was not appropriate. It probably should have been reported or something, but I didn’t even know how to advocate for that being inappropriate.

I took it on and internalized a shame for myself without understanding now, years later, I’m in a new place where I don’t know if I would stand for that. It’s possible I would, though. It’s hard to stand up for yourself in a world that doesn’t celebrate our differences. I still think there’s so much ignorance around these things. We see it in politics. Even when we had Hillary Clinton running for president, various other women running for president and aiming too in the upcoming election. That often showcases a lot of viewpoints around women’s leadership and all of these biases towards gender and how they impact somebody’s ability to do great work.

I love what you said earlier too, Jenn. It’s not about a gender thing, but it’s also about how different brains and bodies work and not seeing that as a bad thing. It gives us an opportunity to become more self-aware and intuitive and find out where we thrive. As you were saying about your energy, there are certain times of the month when it works to my advantage and I have an incredible amount of energy and I think, act, and speak differently.

Everything flows. If I can tune into my strengths and not try to capitalize on them but use them as opportunities to make a bigger difference in the world, which is something you’ve touched upon too. It’s not just about making money and being successful, but understanding how we can collaborate with one another, communicate better to achieve our big goals, and have an impact.

You’ve given me a lot of hope. You’ve given me some great tools. You’ve mentioned your support group, Jenn, and I want to join it because I’ve already learned so much from you. I want more not just energy from someone like you who I feel accepts me and wants to support me, but also that accountability and the community element like you mentioned earlier too, is so big. A lot of us can feel isolated, alone, scared, vulnerable, and full of shame and that can lead to so much masking.

If we can have a place where we can unmask, learn, and strengthen ourselves and our bonds with each other, that’s such a beautiful thing. I’m so grateful for the work that you’re doing. It’s important. I hope that your goals come true too. You might have said twenty years. I’m like, “Can this happen a lot faster? We need this now. We needed this years ago when I had that experience at my job.” I’m not saying rush. Take your time, Jenn. I hope it doesn’t take us collectively that long.

I wish change was quick and easy, but people resist it so much, and rightfully so. Change is scary. It’s unknown. It probably will take that long if not longer, if I’m being honest. I do think though, that I mentioned the support group before we started this interview, so I do want to share about it. I have a monthly support group that is free and I always plan to leave a portion of it for free. The monthly gatherings are free, but I might add on some more that are for a paid service for people who are looking for more support.

Anyways, it is for people who identify as neurodistinct. I haven’t used that term yet, but I do want to share that is a term that I’m trying to transition my vocabulary to use more regularly, but use the term neurodistinct instead of neurodivergent. It better encompasses the fact that someone who is neurodivergent is different and the word divergent means to separate. I don’t want to think about it as a separation but as someone who has unique skills and gifts. Neurodistinct people are anyone who identifies that way, who has invisible disabilities or chronic illness, and who wants support in navigating those situations in the workplace.

In that group, we talk about communication skills, self-advocacy skills, and energy management skills specifically. That’s what we focus on. However, if the conversation leads in a different direction, we’ll support you there, but that’s the main outcome that we want for people who attend the group. I cohost it with a therapist who specializes in working with these populations. She manages a little bit more of the in-depth personal side of it, whereas I manage a little bit more in-depth with the workplace communication side of things.

I can’t wait to check it out myself for all the reasons that I mentioned. Thank you so much for bringing up that terminology, neurodistinct. I don’t think I’ve ever heard that before. It’s so interesting. It’s like learning a new language for me. I feel like I’m still fumbling through and I want to get the words right because I feel that helps do it justice, clarify, and advocate. It is like a big learning curve and there’s so much to take in. There’s so much to understand.

Another reason to join a group of where you can be in conversation more often. The more that we’re listening, learning, and speaking about things, the easier it becomes to add them into our lives and share that with others. As I mentioned, Jenn, I’m grateful for you on a personal level, and how supportive you’ve been of me from the very first communication I had.

I’m so grateful that you’re sharing this in a public way where people who are reading this episode can benefit you no matter where they’re coming from. I loved what you said earlier about it not just for people with a disability, with a distinction, with a difference. It’s for everybody. Just because you don’t need accommodation doesn’t mean that you can’t learn more about them. You might find that you actually do want to ask for accommodation like that exercise you recommend for people.

There are so many needs that aren’t met because we don’t know how to ask for them. We don’t know how to respond to people who ask for them either. I get so excited and lit up when I hear somebody asking for accommodation. Even if I don’t need it, I’m like, “I’m so glad. I’m so thrilled that you knew how to communicate that.”

That’s an example of being there for others. When I first went to the Ask JAN website, it started off, I don’t know if it was on the main page or when I clicked over to the A-to-Z list, but it has this list of all these different types of disabilities and differences. It’s in the A-to-Z section. It’s such a long list, Jenn, and it makes me want to go and read about every single one of these disabilities and differences because when I see this list, I recognize a lot of ignorance within myself.

I’ve become very knowledgeable about autism. I still have a long way to go with that. I’m learning a lot about ADHD, but there are so many terms underneath the neurodiversity or neurodistinct umbrella. There are so many different types of disabilities that I have no knowledge or experience with. Every time I have a conversation like this, I feel I want to keep being educated. It’s another reason to stay in touch with you, Jenn, because I know that you are passionate about all of this yourself. Thanks for putting your passion out into the world, and creating a big goal with that to impact others. Thanks for spending so much time with me and the reader.

Thank you so much, Whitney. I want to say one thing before we wrap up. Two things but under one umbrella. It’s okay if you don’t know all of this stuff. I don’t either. There is so much to learn and we’re always learning from one another. When we’re advocating for ourselves or each other, that might look like advocating to someone who doesn’t know anything about this.

If we flub on the words or anything, it’s okay. They don’t know either, probably. It’s part of being human. Even another advocacy piece we can say is, “I don’t know everything about this, but I know these couple of things that I want to advocate for and can you help me with that?” or whatever it might be. Anyways, I wanted to throw that out there and thank you so much for this conversation.

I enjoyed getting to hear your stories and getting to refresh your mind. I hope that some people took something away from this. I want to say, if you’re reading and any of this resonated with you or maybe it’ll click with you in a few years if you discover that maybe you have one of these differences later on as Whitney shared, please reach out. I’m here to help. If there’s anything anyone ever needs, I’m an email away.

I love to have meetings with people face-to-face over Zoom or in person. If you happen to be in the Colorado area, that’s where I am. I want to get to know you, hear your story, and see how I can support you. I want you to know that no one’s off-limits. If you’re reading, thinking, “I don’t know. Sure, why not?” Let’s talk. If anything, you make a new friend out of it.

That’s how I feel. I can attest as I did from the very beginning, you’re so approachable, Jenn. If you ever need any support, Jenn and I are each there for you individually and would love to help you out, however either one of us can. Thanks again for reading and thank you, Jenn, for being here. It’s been absolutely nourishing.

Thank you.

 

Important Links

• Jenn Grindeland
• AskJAN.org
• https://TheWorkingWell.us/support-group
• https://LinkedIn.com/in/JennGrindeland

 

About Jenn Grindeland

Jenn has a Bachelor’s degree in Psychology, Master’s degree in Organizational Leadership, and experience as a yoga and mindfulness teacher. With this background, she teaches teams leadership and communication skills that are thoughtfully designed to support equity for and inclusion of neurodivergent and invisibly disabled employees.

 

 

 

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