The Impact of Late Neurodivergency Diagnosis in Women 

Esi Hardy (Host): 

Hi again and welcome back to the Equality Edit. Thank you so much for coming along. So the Equality Edit is where we unpack equality one story at a time. So today my guest is Teresa. And actually, when Teresa and I met, we bonded over her pulling me up on mispronouncing her name. So I actually called Teresa, Theresa, and then she asked me really politely, actually, my name is Teresa, or please call me TJ. And so actually, we had a really good conversation about how it’s so important to do that on the very outset, because if you don’t do that straight away, then it sets kind of what’s in somebody’s brain as to what your name is. So me, for example, being Esi, people call me Esi all the time.  And if I if I don’t say straight away my name is Esi people will continue to call me Essy and then it I don’t like it so I think it’s nice and it’s really good that we That we ask people to pronounce us by the name that we choose Teresa would you like to come in and share your thoughts on that? 

 

 Teresa (Guest): 

Yeah, so my name is Spanish because I was born in South America and part of my dad’s family is Spanish. So if they change it to a British name, it just doesn’t fit me. It’s not my culture originally. So yeah, I totally agree. 

 

 Esi Hardy (Host): 

Yeah, yeah, exactly. And I think it’s about as you’re just saying, your name is Spanish and it’s about identity as well and about kind of owning and celebrating that identity. And when somebody accidentally or not accidentally takes that away, it’s almost taking away our identity. 

  

Teresa (Guest): 

So what really helped me, I have a friend and she changed her pronouns to they them. It was so important for her that people would accept this and also some people have dead names. I don’t know if everybody knows this, some people like transgender people or other people for whatever reason they say, I want you to use this name now. And if you repeatedly call them by their old name, it really grinds us wrongly, isn’t it? Or mispronounce our names. Yeah. 

  

Esi Hardy (Host):  

Absolutely, and it’s a lack of respect to who we are as a person. So if somebody is saying they, them, and then we continue to use the wrong pronouns, then it’s a kind of disrespect. I heard something really interesting a few weeks ago from somebody talking about pronouns, and they identified as they, them. And they said, essentially, if you step on my toe, as in if you call me by the wrong pronouns by accident, you’ll apologize and I’ll accept them or move on but if you continue to step on my toe and dig your heel in then I’m going to be offended and I think that’s a really good way to somehow 

 

 Teresa (Guest): 

Yeah, it’s hurtful to people because you feel not seen and not heard, isn’t it? So, yeah. 

 

 Esi Hardy (Host): 

So on that note, let’s just move on. Would you mind introducing yourself, telling us who you are and why you, why we’re recording this episode today? 

  

Teresa (Guest): 

Yeah. So my name’s Teresa, like you said, and I am a grief consultant, educator, coach and mentor, which is quite a change that happened in 2015. In 2012, my friend’s died. And three years later, she still got really very well meaning, but very strange comments. And that, yeah, propelled me into wanting to help people like her and train in grief. And I’ve done this since then. 

This also brought me to the experience that well-meaning comments or judgment is not only for grievers, but for disabled people. And I had a lot of mental health issues, but I’m now physically disabled. So I’ve got chronic illness, I use a wheelchair, and I was diagnosed as autistic in 2023 and having ADHD the year before. And when you are immersed in this community, you realize that a lot of people really suffer with 

 Yeah, these well-meant but harmful comments. And I think it’s so important that we advocate for ourselves and for each other to change this because it’s really meaningful for people to be represented in a proper way in workplaces and society. 

 Esi Hardy (Host): 

I completely agree. completely agree. just what you were going, I just wanted to kind of go back and I know we didn’t, we didn’t talk about this before, but regarding, you know, people’s well-meaning comments, but inappropriate comments about grief. It’s, I don’t know about the rest of the world, but it seems to be a huge thing in the UK that people just don’t know how to deal with it. When people say that somebody’s dying or they’re suffering a loss or they suffered a loss. 

 Teresa (Guest): 

That’s absolutely, that’s my main passion to help people what to say and not to say. And that will come throughout hopefully our podcast because that refers also when you’re in the workplace and someone shares that they might believe they’re autistic or have ADHD or they’re diagnosed. It’s the same thing. And it’s just a skill. You know, I’ve said the dumbest things myself before my training. So I’m not trying to judge people or be patronizing, but we can all learn. Like you learn to call someone they them or pronounce my name right. So, you know, it’s just a skill. 

 

 Esi Hardy (Host): 

So true, so true. So absolutely, completely agree. So when we were talking about what we’re going to talk about in this episode, you said that you would like to discuss, and I think it’s a really good topic as well, late diagnosis of autism and ADHD in women. So why is that a subject that’s important to you? 

 

 Teresa (Guest): 

So I entered menopause in 2021 and I believe this is why my ADHD symptoms became worse. And I now know that is the case for so many women and it’s just everywhere now and I meet so many lovely people who quite struggle with their late diagnosis. The other reason they might be diagnosed is their kids were diagnosed. You we have so much better diagnoses and information. We are so much more and they think, yeah, but I’m like my child and or I was me when I was little. So it’s just like really important to discuss these things because we cannot escape it, I believe. 

 

 Esi Hardy (Host): 

Yeah, no, I completely agree. And I’ve also heard that kind of it seems to come out in menopause and perimenopause as well. And so what would you say to people because there’s a lot going around. I heard yesterday somebody was was reiterating what somebody said to them. But I heard yesterday there’s something going around about almost like the neurodiversity pandemic almost like it’s catching because so many people are self-identified. 

  

Teresa (Guest): 

Yeah, there’s like a drawing or like a graph for when left-handed people were not stigmatized anymore. And it sounds like there were the left-handed people and then all of a sudden the curve goes up and there was no left-handed pandemic. So I think the awareness is there because before people would just suffer and no one would acknowledge this and I’ve learned so much through groups and other people have actually asked me in the pandemic, do you have ADHD? And I was like, no, of course not. What is this? But because through Zoom, you know, we were communicating in a different way and I had access to more people rather than before. was just like working, not really interacting in the same way I did then. And then a physio was on the phone once like, yes, anybody, I’m like, yes, people have mentioned. And so, I just want to raise two important points. Because a friend said to me as well, everybody’s got ADHD now. And I’m like, yeah, but we don’t get a special price. If that would give us an advantage in society, I would understand why people want to be diagnosed or want to say, I’ve got ADHD. But there’s a lot of stigma still, and there’s a lot of shame often. So what benefit? is it actually when people out themselves? A lot of people say, I don’t share my diagnosis in the workplace or with friends. And the other one is like, we can share symptoms, like we’re all forgetful. Yeah, okay. But it’s actually really serious. And the things I’ve missed out on and the issues I had and the mental health issues I had and the misdiagnosis. It’s no laughing matter and it’s beyond what people think ADHD is, especially in women. 

  

Esi Hardy (Host): 

Yeah, absolutely. It’s when it’s, know, it’s, it’s, I’ve heard loads of people say, it’s so I, you know, as you say, I forget things all the time, or I can’t hold this information in my head. But it’s very different when actually all it takes is writing something down, making a quick note to, to, to find yourself a way to remember and actually really struggling with this on a daily basis. I mean, nobody ever says, I’ve got cerebral palsy, nobody ever says, you know, I do, can’t be bothered to walk around sometime as well. It’s this kind of misconception that if it’s an invisible disability it can’t be real. 

  

Teresa (Guest):  

Yeah, so I read this meme yesterday and the person was dismissive and said, oh, you know, don’t have ADHD, it’s just in your head. And the other person was like, yeah, where do you think my brain is? Because, you know, it’s a brain issue and a development issue. Yeah. 

  

Esi Hardy (Host):  

Yeah, an insult that actually they’ve tripped themselves up over. 

  

Teresa (Guest):  

Exactly. So, double meaning. 

  

Esi Hardy (Host): 

 So let’s talk about myths and misconceptions. So what are the myths around ADHD? 

  

Teresa (Guest):

So people are seen as lazy and we now know that people with ADHD have low dopamine. And I was curious once and I googled what happens if we don’t have any dopamine because what does that even mean low dopamine? And it turns out it’s really serious. So if we had no dopamine, we would be in a comatose state. If we have very low dopamine, you can have issues like Parkinson’s. So your mobility is impaired, your speech is impaired. It’s actually really important to have dopamine. And I think the difference between someone who’s lazy and who’s got low dopamine is like the person who’s lazy enjoys being lazy. And people struggle so much with, I should be doing this feeling guilty. I haven’t done the washing. haven’t done it. So it’s the ability when you don’t have ADHD, you have a thought, I want to do the washing. And you just move your body and you get up and you do the washing. While when you don’t have the dopamine, you want to do the washing, but you physically can’t move your body. But people judge us on what they see. If they see the house is untidy, the washing is not folded, and you think it’s not a big deal, then yeah, of course we’re judged on the results that people see and not really on the reasons we have. 

  

Esi Hardy (Host):  

What’s going on behind. That’s a really good way of looking at it. One’s a choice, one’s an impairment. 

  

Teresa (Guest): 

Exactly, and that’s why it’s a disability, not also not a superpower, you know, sometimes people go, it’s a superpower because you can get really enthusiastic about projects or with autism, you can drill down on a rabbit hole and I’m glad I’m happy being autistic and having ADHD. I’m at peace with this, but language matters and I don’t call it a superpower for me. It’s still a disability because society disables us.  And it’s a struggle and it was a struggle my whole life, but I’m still glad I’m autistic and I’ve got ADHD. 

  

Esi Hardy (Host):  

100 % agree with what you’re saying about how society disables us 100 % will have to do another episode on the social model of disability But that’s gonna be a long one because I can’t stop so forewarned You know might go on for six hours. What you were saying about the superpower absolutely and again That’s new way of conceptualizing it that how is it a superpower that actually you? Focus on something so much that you burn yourself out and then you can’t do something a week. How is that possibly a superpower that anyone would want? 

  

Teresa (Guest): 

Yeah, exactly. And what I love, because I always struggled. had like probably up to 30 different jobs in my life now. And I always envy people at like a career of 20 years in finance or whatever. But now, because I’m physically disabled and the jobs I had before, like I was a nursery nurse and I was an engineering assistant, I wouldn’t be able to do them anymore. I work 100 % from home now. But because I was trained in something different, I learned something different. I created a life for myself that I can still be able to work and share what I want to do with the world. So that’s why I see the benefits. And you know what, neurodivergent people are so lovely. I feel so comfortable with them. I’m so glad I belong to the community, but it doesn’t matter that we don’t struggle. And one really important point I once read, so with autism, we talk about not high functioning anymore because that’s really misleading. But we say like high support or low support needs. So I would be seen as low support needs because I’m verbal and I can do a lot of things that maybe children who struggle with just the world and when they grow up, they might not be able to live independently. For example, they would be high support needs. But it said that a low support autistic person is still high support compared to a neurotypical person. And I’m like, my God, yes, because I felt so guilty. I thought if I’m low support, why do I struggle so much? But it’s the comparison to the neurotypical person. And I’m like, yeah, that really resonates with me. 

  

Esi Hardy (Host):  

Yeah, and it sounds like that’s really empowering as well. 

  

Teresa (Guest):  

Yeah, absolutely. You know, I think that’s why I wanted to come on the podcast. And that’s why we should have this discussion, because we need to change the mindset from feeling guilty and I’m not worthy and I should try harder and I’m burning out in that. actually, no, if you reframe things and you learn hacks, 

  

Esi Hardy (Host): 

I mean, there’s some people out there that think that people want to label so that they can get benefits and they can get more money, but it’s not. It’s so that you can feel empowered and have vocabulary to articulate the support you need and the barriers that you face. 

  

Teresa (Guest):  

Absolutely, yeah, totally agree with that. 

  

Esi Hardy (Host):  

And also be able to feel part of that community as well. I also, from a physically disabled person’s perspective, I find the community to be really empowering. I have a friend that said to me the other day, and it really resonated with me, that when she’s with other wheelchair users, it’s the only time that she feels that she completely relaxed, because it’s the only time where we don’t have to say, oh, it’s going to take me a bit longer, no, I don’t want any help, okay, sorry for taking so long, because we all just understand where we are, is that the same for you as well? 

  

Teresa (Guest):  

Yeah, I had to, I learned about crypt time, you know, that things take you longer. And I have to tell people and it’s like, I forget as well sometimes what you add another 10, 15 minutes. And then I’m like, okay, that will take longer or I need this more. And yeah, you don’t have to explain when people understand you lift experience or share your lift experience. 

  

Esi Hardy (Host): 

Yeah. I love Crypto. I love the concept of Crypto. Can you explain what it is? 

  

Teresa (Guest):  

Yeah, so cryptitis, before I became disabled, I would have my bag, my keys, out of the door, maybe my jacket. Now, my god, I have to put my knee braces on, I walk slower, I have to go to the car, my wheelchair is in the car permanently. But then when I get to the place, I have to put the wheelchair battery in, I have to take the wheelchair. So it’s all the extra time we need to accommodate our disability. And it’s because I wasn’t born disabled, for me it’s like, I have got my wheelchair since 2019, but my mindset is often still like, keys, jacket, bag, and then I have to rush, or I’m a bit late because I didn’t factor this quick time in. 

  

Esi Hardy (Host):  

And it’s also I think it’s also the barriers that we face in society as well. So the barriers of having to maybe I’m making assumptions, Teresa. So please interject and tell me what your barriers are. actually, rather than making assumptions, I’ll just say what my barriers are. So my barriers in society, for example, if I go to the train station, I have to find the platform staff that will help me on the train sometimes negotiate how fast they’re going to walk so that I don’t have to get a train half an hour later when I know I’m going to get the train in five minutes. But also, you know, I, um, I’ve had a disability since I was about four months old, but I still think myself as a fast person. So that Crip time for me is also remembering that no, I say you’re not as fast as you actually think you are. Um, you know, you can’t go that fast. You were going to get lost because you are rubbish with directions and then you refuse to look at the map. So now you’re 45 minutes late. All comes into my cryptime because my mindset is still a lot fun you know it’s still thinking along the lines of somebody that’s a lot quicker than I actually am and there’s a part of me that just won’t accept that I’m actually slower than I am. 

  

Teresa (Guest):  

Yeah, totally get that. What is nice that if your family members or friends accept crib time. So I wanted to go for my birthday is next month and I wanted to go with my kids to a restaurant and my daughter then I just gave them the address and she’s like, yeah, it’s wheelchair accessible and there is enough space. And I’m like, you know what? That’s so lovely that you’re checking this. And she said, yeah, I always check now because I know you’re not comfortable if you don’t sit in your wheelchair. So she even goes out of her way to make sure that I can then be accommodated and that’s really lovely. 

  

Esi Hardy (Host):  

Yeah, that’s brilliant. And that shows somebody who has real compassion and empathy for your experience as well. 

  

Teresa (Guest):  

Yeah, yeah. And it shows sometimes more compassion than I have for myself, to be honest, because sometimes I still feel a bit like a nuisance. I don’t want to say, but like you mentioned earlier, a bit apologetic, isn’t it? sorry, it takes so long. And we shouldn’t really have to apologize for this. 

  

Esi Hardy (Host): 

When we talk about internalised ableism, we talk about how we live in the same society as everybody else. So everybody gets these messages from media, from the government, from society as a whole, from businesses, from everything that we do in the day that we as disabled people are wrong and that actually what we’re doing and how we’re doing it and what we’re trying to achieve is the wrong thing. And although we might be in power as individuals, we internalize that and it turns into us believing ourselves that we’re wrong. Even though we might be empowered to know in one way that we’re not, we can’t help ourselves and that might be, I don’t want to cause a fuss so I just won’t say anything. I want everybody else to have a good time so I’ll just deal with this. But actually by doing this, we’re diminishing our own experience as well, which is, which is, you know, a little bit about what you were saying there and it’s kind of such a natural thing because I have it all, the time where I have this internal battle with myself. No, you have to say something, Esi, because actually you’re not going to be the person that you were otherwise presenting yourself as in this room if you don’t have what you need to do it. 

  

Teresa (Guest):  

And that’s so important what you just mentioned, because especially women or as girls, we are taught not to take a lot of space up, see the men sitting on the tube, their legs widespread, and we take very little space. And for example, the ADHD, a lot happens inside of girls, not like the boys that jump on sofas. So we are very quiet, we have small space. And when my daughter went to the GP to get a referral for her, autism diagnosis, the doctor said, then as well, everybody is like autistic these days and just dismissed her. So she had to go to a different doctor. And I think it’s society really not encouraging us to speak up. And it’s strange. I can tell friends often they go like, I’m sorry. And it’s like, why are you apologizing for like my friend this morning? I’m sorry, I messed your day up because she had to change something. I’m like, you didn’t mess my morning up. It’s okay, you know, and I said, we just come to this agreement? We don’t say this to each other anymore. But I find it much more difficult to tell myself, like you said, the internal battle with yourself. And it’s easier to point out to other people what they’re doing. yeah. 

  

Esi Hardy (Host):  

I just want to wind back to something you said a second ago about kind of the doctor saying, everybody’s a bit autistic. So that could have been said flippantly as in like, everybody’s self diagnosing these days. It also could have been said in the other way that we were talking about kind of everyone’s a bit ADHD, everyone’s a bit autistic. So what would you say to that? 

  

Teresa (Guest):  

Yeah. Again, a bit like going back to we can share symptoms, but it doesn’t mean I have the same illness like the other person. And it doesn’t really matter how they mean it. I mean, my daughter went out and cried. It’s important for us to speak up for ourselves. We don’t have to agree with this. And in the autism community, self-diagnosis is valid. Because like what we said before, who in their right mind wants to out themselves as a weirdo? I mean, I was bullied from my family, kindergarten, school, workplaces. I was always the weird one out because I didn’t understand myself. I couldn’t really see, read social clues or understand jokes. And now I can speak up and someone tells me a joke. I’m like, I’m autistic. I didn’t get that. Can you explain it to me? But without this knowledge, I just thought, I’m a bit weird. I’m wrong. So it’s so important. I don’t try to understand people anymore. They’re like, why did you say that? Or maybe you meant well. I speak up now and say, that’s not really helpful. Or thank you for your thoughts. But I believe this. 

  

Esi Hardy (Host): 

Yeah. And at the same time, I think it’s educating society as well. I mean, that might not always be your intention in that moment, but it does. And then hopefully that person, if they’re a compassionate and understanding person with a bit of self-awareness, they’re going to think next time, that was a really interesting conversation I had with Teresa. And what I learned from that conversation was a few extra things as well. 

  

Teresa (Guest):  

Yeah, so for example, we don’t say per person with autism. I mean, I’m not criticizing anybody if they say, oh, yeah, I have autism. I’m not gonna, you know, they’re making a statement about themselves. But if someone else says, oh, my granddaughter has got autism, I would kindly refer to them and say, we say she’s autistic, because it’s more like an identity thing where ADHD can be medicated. It’s a condition.But I am autistic, it’s part of my identity and I’m proud of it. 

  

Esi Hardy (Host):  

Yeah, yeah, brilliant. Thank you very much. So let’s lead that on to talking about the workplaces. So again, when you say self-diagnosis is an acceptable form in the neurodivergent community, I think that’s also really, really important in the workplace. So as part of what we do as Celebrating Disability, we deliver training into workplaces about how they can be supportive of disabled people. And within that, we quite often are talking about legislation around reasonable adjustments. And one of the things that’s really important is for people to understand that you don’t need a diagnosis to be to get a reasonable adjustment in the workplace. And we actually got quite a lot of pushback on that. Well, what if they’re lying? And so I think this, you know, you’ve essentially answered this about five times already in our conversation. Well, why would you lie? Why would somebody want to be be autistic if they actually weren’t? But what do you think that that kind of self-diagnosis is supportive of disabled people in the workplace and people with neurodivergent conditions? 

  

Teresa (Guest):  

Let’s first look what is a disability. So a disability is something that you probably had for like at least three months or so, and it’s expected to stay there for another nine or 12 months. So a broken foot is not a disability. I broke my foot. I might need a wheelchair. It’s complicated, but eventually it will heal. So we need to distinguish between where people are like short-term impaired. Or it has really an impairment long-term for their wellbeing, for their performance, all these things. So the thing is as well, people who self-diagnose have probably done quite a lot of research and asked around and talked in Facebook groups to other people. So they didn’t wake up one day and thought, I feel a bit autistic today. That’s not what they do. And so the Equality Act, actually very clearly defines what a disability is and what the reasonable adjustments are. mean, I know reasonable, it depends, you know, the size of the company. And for example, if it’s very important, you would need a lift that costs 200,000 pounds for a wheelchair user. And it’s like a sole trader. So then they would say maybe, that’s not reasonable, that’s going to bankrupt them. So we’re not talking about these extremes.  But reasonable can be very simple thing. So a dyslexic person might want to have the memo on coloured printed paper, for example. That doesn’t cost a lot, you know? Or the other person says, look, I can’t read this very long emails. Can you just use bullet points, for example? Or I put a disclaimer on my emails at work because I might be, asking again for something they wrote already or might come across sometimes a bit as abrupt. So I’ve got this, please do not take offense. I just ask for clarity. I’m not trying to challenge you because we know that neurodivergent people and neurotypical people communicate very differently. And a neurotypical manager might think that there’s an employee is challenging them on a decision. And they’re just like, I’m just trying to understand properly. What you want from me so I can do a better job. That’s a reasonable adjustment. Take two more minutes and explain it properly so not everything has to cost money. And if you have a happier workforce, happier team, then everybody wins. 

  

Esi Hardy (Host):  

It’s so true. It’s so true. there’s no definition of reasonable in the Equality Act deliberately because it’s so broad. It’s what people need. But I think the way I explain a reasonable, the reasonable part of the reasonable adjustment is whatever is needed to mitigate the disadvantage that individual is facing due to their impairment and the barriers in society. So that might be as you’ve articulated all those things. reasonable adjustments can’t can be the more kind of expensive kind of structural changes. But I think it’s just because we brought it up, it’s important to say that the first, thought of what the adjustment might be might not be the one you end up in. So as you’ve articulated, Teresa, it might not be that a small business has 200,000 pounds for a lift, but what they can do is make changes to the way the person is expected to do their role. So for example, if that person can’t get up to the second floor, then and the board meeting is on the second floor every month and the board meeting needs to change where it has its meetings. So reasonable adjustment is changing a process as well or changing how something works so that somebody can still participate the way that works for them, for them to give their best. 

  

Teresa (Guest):  

Think it’s just thinking outside the box and not point blank refusing support because what I’ve heard, I’ve heard people refusing support because they said, but then it’s not fair to the others or we have to do this for everyone. Yeah, but the others don’t have this issue. equality and equity is not the same, it? yeah. 

  

Esi Hardy (Host):  

Yeah, completely agree. And I had this, you know, was talking to a client about this the other day. And I think a way to mitigate that kind of, it’s not fair. I don’t have this chair and she has that chair is to really explain what an adjustment is. So not everybody knows what a reasonable adjustment is, including disabled people, don’t come with a book of this was what your rights are as a disabled person. Yeah. I it would be really handy to have actually, but it doesn’t exist. By articulating to everybody in a general way what reasonable adjustments are, helps people develop that compassion because it’s hard to be compassionate if you don’t even know what’s going on. I don’t mean individually for people but you don’t even know the concept of something. So the minute you say reasonable adjustments exist for these reasons then that’s the minute that somebody else can think okay something might be going on but it’s none of my business but it doesn’t mean that it’s unfair kind of thing. 

  

Teresa (Guest):  

I experienced when I worked as a nursery nurse, I was in so much pain and I couldn’t lift the kids anymore. It just got worse and worse. And then I was told, yeah, it’s not fair that because I tried to do other jobs and then my colleagues had to lift more kids up and I was told, yeah, that’s not fair. Why should I do this? And because it was so new to me, disability, I didn’t have the words to speak up. And the management was sort of, I thought encouraging my colleagues to say this. And if they had led by example and explained in a staff meeting, look, we have this person, they have these issues. That means maybe she can take over some of your jobs that don’t really involve heavy lifting. But no, they didn’t. And in the end, I just walked out. One day I was in so much pain. And I’m like, yeah, I can’t do this anymore. And yeah. I had to leave and I was really sad about this and it could have been handled much different. 

  

Esi Hardy (Host):  

Yeah, and that’s the impact, isn’t it? I mean, just by having those open collaborative conversations, can save all that heartache for you. And if you want to think about it from a commercial perspective for the business, save all that kind of extra cost of hiring somebody new or the potential lawsuit that might have gone on as a result of it. Just by having that collaborative, open conversation where if the disabled person feels confident to buy sharing that. I we can talk about reasonable adjustments in the general so that nobody has to say, these are my adjustments and this is why I’m doing it like this, if they don’t really want to. But by having an awareness that these things might exist, it makes a massive difference. And I always think about it, comparing it to somebody with a physical disability. So if I go into the workplace, nobody’s going to ask me why I need a lift, because it’s very clear in an electric wheelchair that I’m not going up those stairs. But so why do people with invisible impairments always have to be questioned? We need to be getting to a place where if you say something, it’s obviously for a good reason. 

  

Teresa (Guest): 

And I think you raised a really good point because I was very qualified. was a room leader and in another nursery, I was even deputy manager at some point. So you’re right. I left with years of experience and they had then to hire someone else. And that’s the whole point why we want to encourage employers to really embrace reasonable adjustments because especially when women have been maybe part of that company for a while and then they hit menopause and then they found out they are neurodivergent. You’re losing someone who’s got a lot of experience and could maybe even mentor younger, newer staff. So it’s not like we are asking for something for nothing. It’s in their best interest to really look at this and go, that’s a valuable employee. We want to keep her and how can we support and help her that she can still do her job. 

  

Esi Hardy (Host):  

That’s so true, so true. And I think that leaves us really nicely onto performance impact plans. So how does this affect people moving through the business and disciplinaries and things like that? 

  

Teresa (Guest):  

So my own experience is that my manager, because it was like in the pandemic, couldn’t, or like short after the pandemic, we wouldn’t really meet in an office or so, but we would have sometimes supervisions in a cafe or so, know, things were changing. And so she said, oh, we have booked a meeting in a cafe. I thought, oh yeah, was feeling really excited about it. And so I sat down and said, yeah, we’re doing this performance improvement plan. I had no idea what it is, never heard of it. And she said, at least it’s not a disciplinary. And in that moment, my heart sank because I thought, what do you mean? At least, you know, that sounds serious. And I was pulled up on my admin skills because I worked as a mental health support worker and I loved this job. I did this for four years. But my reports were too long because, know, ADHD, we talk a lot. can write too much rather than too little. Tell me to do something in 500 words. And I’m like, 500? I can give you 5,000, you know? So it wasn’t really anything. I hadn’t breached anything. But it was, I struggled with the admin side. It was brilliant working with the people and supporting them with their mental health. And she said that. But the admin thing, needed improving and I’m very grateful for the suggestion she made and she actually helped me then to skim down and you know not spend hours and I was stressing myself because I had too much work. But later I realized that these were things that I struggled due to my ADHD not because I wasn’t capable or I didn’t know what to do and yeah it could have been handled better because if you’re short of a disciplinary or so. And it just took the adjustment from me. And then the next supervision, it was taken off the table. And she was very happy with the way I did things. But I think these things should be for people who can’t be bothered to do their job, or they purposefully try to get out of hard work, so. like that. But someone who struggles with disability. And I’ve heard that from other people who are neurodivergent and have been continuously criticized and had continuously have to raise. This is because of my ADHD. I ask you for reasonable adjustments. I’m not getting it. You are not enabling me. Like I ask for whatever they needed is still not there. Like they get special software from Access to Work. And then the manager is not signing it off. And then three months later, they’re being criticized and they’re like, Where’s my special software? I’ve been waiting three months. can’t do my job because yeah, it’s like putting me in front of stairs and go like walk up and I’m like, I’m in my wheelchair. Where’s the ramp? And then, yeah. 

  

Esi Hardy (Host): 

You for being late to the meeting because we didn’t provide access. 

  

Teresa (Guest):  

Exactly, absolutely. 

  

Esi Hardy (Host):  

It’s, I’m trying to think of the word. It’s astounding to me how people cannot see cause and effect. You have done this, therefore this is the effect. But cause and effect can work in a positive way as well. So if you do this, if we’re open and we’re collaborative and we can just have that conversation, then this will be the impact of that. 

  

Teresa (Guest):  

Think that is the relief we get when we get our diagnosis or we just self-diagnose and go like because if I know this is because of low dopamine or this is because I’m dyslexic and I’ve then I can take steps to rectify this or at least make it maybe a bit easier for me and there’s like I can do this I just take a bit longer or you know, it’s this thing, I know we all need productivity and people need to earn money. But as a society, if we get more and more stressed and we look more and more just the cost effectiveness of employees, I think we’re losing something. And long term, people then get off with burnout and stress, or backache. You know, there are a lot of research that emotional stress or workplace stress then impacts physically. And eventually you will have a result for that as well down the line. And then people are signed off sick long-term and you can’t replace them because you know, you can’t just let them go. And if we get it right from the beginning, then we help people to be long-term healthy, have good wellbeing. And not in a few years time be completely burned out. And like you said, then they have to hire someone new and that is just gonna cost them so much more. 

  

Esi Hardy (Host):  

Completely agree. Something struck me of what you were saying earlier or a second ago regarding this is why it’s so empowering for self-diagnosis. And I agree because then you can come up with your own kind of solutions, but it kind of takes the responsibility away from where the true responsibility lies. So I believe that the true responsibility lies with the business to actually meet you and ask you what support you need in order to do your job as productively as possible as you want to do. 

  

Teresa (Guest):  

I think there’s also the idea that it’s shameful when people go for job interview or with their application. Often they don’t say that they believe they’re neurodivergent because they think, they’re not going to hire me. And this fear is probably there’s a reason for it, but they neither do themselves a favour nor do the employer a favour. So like you said, the employer could ask. mean, if we are in a, ADHD pandemic, they can’t say we didn’t know about it, so why not ask people? 

 

Esi Hardy (Host): 

That’s true, you can’t handle it both ways. 

 

 Teresa (Guest): 

Exactly, yeah. So is there anything we can do to help you do this job? You know, can you think of anything? Or at least when they start, have a sit down again, make it part of your introduction to the job. 

  

Esi Hardy (Host):  

Yeah, yeah, absolutely. Make it part of business as usual. So it becomes muscle memory and then people don’t have to remember to do it. 

  

Teresa (Guest):  

Yeah, no one feels awkward. That’s just how we do it. 

  

Esi Hardy (Host): 

Yeah, exactly. Absolutely. I think that’s a really good point. I mean, as all your points are. So let’s talk about the dreaded subject, access to work. Tell us about, I think I sounded a bit like Brian Butterfield there. So tell us about access to work and what your experience is about it. 

  

Teresa (Guest):  

So I’ve got positive and negative experience with them. So it’s very well advertised that you can get like over 63,000 pounds in support per year. Nobody gets that because it’s very difficult. And at the moment, because so many people shared, go to Access2Work. I think they’re running out of money and they’re taking awards away from people now. So for Access2Work, you only have to be employed one hour per week.,In employment. If you’re self-employed, you have to have a turnover of 6,700 pounds per year, which I feel is very unfair because my award was taken away from me now because I was short of it. And I had an emergency operation in my eyes. I’ve got glaucoma in December and I had other issues, kidney disease. So I’m running my business, being very unwell. And all they looked at, did you meet the criteria of the threshold or not? So they didn’t do any reasonable adjustments because I thought I’m still here with all the issues, but someone who’s employed only needs to be employed one hour a week. Anyway, so you can get taxis if you can’t drive, but you for this, you need a diagnosis and why you can’t drive or use public transport. But for all the other support, you don’t need a diagnosis. So I was given my first support before I had my official diagnosis. So you do a workplace assessment. If you apply within the first four or six weeks of being newly employed, the employer doesn’t have to pay anything, which is good. And you can even apply for it up to four weeks before you start. If you apply later, because like me, I didn’t know that I could get support, then they have to depending on the size of the business, they have to contribute a little bit, it’s compared to what you can get is not a lot. And I got software, I got a special chair, I got a headset, a special keyboard. So it depends really on your needs. You can also with ADHD, you can get workplace coaching. So the idea is amazing. The problem with it is they’re so behind now. And if you start a job and you have to wait six months till you get your workplace assessment, you might not even be in that job. So they really need to do something about it because it sounds very good on paper. And like I said, when you get the support, it’s amazing. But yeah, there a lot of things they don’t do properly at the moment. 

  

Esi Hardy (Host): 

I’m sitting here thinking, shall I contribute to this part of the conversation because I have lots of things to do. Which are what is the opposite of controversial? Traversial? No, it’s made up word that they aren’t. They’re not good for access to work. So and also, again, the podcast might go on till tomorrow morning. But yes, it’s what I will say that one piece. I mean, you said lots, but the one piece that I picked out that I’ll talk about is that it’s very ironic that the same government who set the rules and the legislation around reasonable adjustments break that legislation for themselves. 

  

Teresa (Guest):  

Absolutely. 

  

Esi Hardy (Host):  

And that’s all I’ll say about that. 

  

Teresa (Guest):  

Yeah, that’s a whole other podcast, I think. 

  

Esi Hardy (Host):  

Exactly, tune in to the nightly episode where Esi rads and raves about access to work. But please don’t take away my funding. 

  

Teresa (Guest):  

Can I just say, so if anybody’s listening and wants to apply, that’s quite easy actually. So you just go to the website, just Google access to work and you just have to fill in a short form like why you need support. I would put it in a Word document first and then you can copy and paste. Because when you have more than 15 health issues like me, you don’t want to type them out all the time. But yeah, it’s just a very simple application form. Tell your manager you have applied, because they will be contacted and they are not surprised and they will support you with that. But applying itself is not really that difficult. 

  

Esi Hardy (Host):  

I actually had an experience this afternoon where somebody from a company called me up and wanted to ask me a few questions regarding an employee that had applied for access to work. the employee was had just been employed, like they were a new recruit, and they hadn’t identified that they were disabled, and all their conversations were over a virtual platform. So I have no idea whether they were physically disabled or not, because it didn’t matter for us in the conversation It doesn’t matter anyway, but it didn’t matter in terms of the conversation. And the the person that I was speaking to had she had such a good attitude but just was really really nervous about it like like nervous about what to do you know I’ve never heard of this before it was mentioned to me the other day what do I do where should I start you know what should I do to prepare oh my gosh I want to do the right thing by my employee so what advice would you give people that are thinking that? 

  

Teresa (Guest): 

So my manager had no clue as well and really struggled and I had to educate her on this. But the good thing is that Access to Work actually offers training for managers, I believe, or at least they did at some point. So I love that she was like trying to help, but I think that’s another issue because if they’ve never heard of it, if the company doesn’t go to the employee or your new starter, do you know about Access to Work? Do you want us to support you? And it’s actually the other way around. It was really exhausting for me, that I had to educate my manager. I mean, she was absolutely lovely about it and really tried so hard to help me. was so frustrated and apologised, but it was hard for both of us. 

  

Esi Hardy (Host):  

I had a similar experience when I was recruited into the role that I had before setting up Celebrating Disability. I didn’t really know about Access to Work either. So I said to the HR manager, do you know about Access to Work? And she was like, no. And that was kind of conversation done. So she wouldn’t engage with me about it. So I had to take the responsibility to do all the work myself. So it’s so important, I think, that as a business that you train your managers, your hiring managers and your line managers to know the basics so that when somebody says I need some support or I’ve applied for access to work, the manager knows where to start because it’s only fair for the manager and the disabled person as well. 

  

Teresa (Guest):  

But don’t you think being disabled is already exhausting? It’s a full time job. You know, all the things we have to do extra, all the health stuff we have to research, all the, like, my main thing is, is there parking? Is it wheelchair accessible? All these things, it’s already so much hard work. People often think, disabled people, watch Netflix all day, they lie in bed. Yeah, no, it’s not like that, you know? And I think that’s. Yeah, and it’s like that’s insult to injury, isn’t it? I already have the bird, well, I don’t know if I can call it bird, but I already have the challenge of being disabled, and then you expect me to do extra work, which is so much more difficult for me than for the person who might have extra energy to read up on it. So yeah, I like you. 

  

Esi Hardy (Host):  

And then whilst you’re making us do all this, you’re still expecting us to complete our role and the duties within our role as well. So again, that leads us really nicely. It’s almost like you’ve seen the notes, Teresa. That leads us really nicely to talk about identity and labels. So let’s talk a little bit about how labels can, I mean, you’ve talked a little bit about empowering, how labels can empower, but how they can harm as well. 

  

Teresa (Guest):  

So a lot of women, sometimes they’re even in their 60s and 70s, people go like, why do you want to label? Why do you want to diagnose this? Like you’re almost at the end of your life, you know? And I was labeled from childhood. Unfortunately, by my daddy labeled me idiot and other name callings. And you know, you’re labeled weird or too much, too difficult. So we already have labels. I would like a medical one, you know, a diagnosis one. And we label ourselves, you mentioned earlier, you know, your own inner, like, you have to encourage you and not self-love or you not talk negatively about yourself. And so labels are just words we use for ourselves. And one of the labels is like, everybody’s ADHD is like a label as well, I would say, or a statement. And they’re harmful because they’re dismissive and they’re missing the point. And it’s more like you have a bad character rather you have a diagnosis. Yeah. And that’s just not okay. 

  

Esi Hardy (Host):  

Yeah, I completely agree. Completely agree. So for the audience or the viewers and the listeners listening and watching along, what do think they should take away from this? So if you were going to leave them with one message, what is it going to be? 

  

Teresa (Guest):  

I wanted to encourage people to look at the right to choose way. So when you go through the NHS, it can take you years, like five to seven years in some areas to get a diagnosis. It’s unbelievable. So right to choose is an NHS agreement where you can go to a private provider like Psychiatry UK or ADHD 360. There’s a certain protocol how to do this, but you can find that on their website and your GP still has to refer you. But my diagnosis were like, I think a year for ADHD and seven months for autism because it’s very in demand now. It might be a bit longer, but it’s not going to be three, four, five years. So if you suspect your neurodivergent, go for it. It’s so worth it because you get a letter for your employer. And you get a letter for any college, university or so you might visit one day. And it has your diagnosis and recommendations for the workplace. And it’s really, it’s such a powerful document. So don’t listen to family or friends who say, it’s not worth it. And what’s the point? I just encourage you go for it. The second one, if you don’t want an official diagnosis, self-diagnosis is valid and share with other people who also think they’re ADHD or autistic or anything else. Go to Facebook groups, especially women’s group. Find your people, find your tribe, like what you said in the beginning, you know, she said, if I’m with other wheelchair users, I feel like myself. And I think that’s with any illness or condition or like I’m originally from Germany, I get excited meeting other Germans. I’ve been here nearly 30 years and I love it. I’m not going anywhere. But I meet another German person, I’m like, oh yeah, you know, there’s just something that gets us together, that resonates with us. So yeah, find your people and be proud of yourself. Don’t feel guilty, don’t feel lazy. Really work on self-love and appreciate that you just have a disability and you need to deal with it, but it doesn’t mean you’re a bad or lazy person. 

  

Esi Hardy (Host):  

I think that is amazing advice. Thank you so much. And yeah, I see that said I think that sense of belonging is perhaps what you’re you’re kind of maybe articulating not trying to put words in your mouth, but that belonging that actually this is part of my community. And just on a side note, don’t speak to me in German, but I was born in Germany and lived there until I was three. German was my first language. 

  

Teresa (Guest): 

 Wow. 

  

Esi Hardy (Host):  

So thank you very much, Teresa. I think the messages to other disabled people about empowerment, they’re so powerful and I 100 % agree. What advice would you give other EDI professionals, maybe line managers, to support women with late diagnosis? 

  

Teresa (Guest):  

First thing is believe them. Don’t start arguing. You know, if someone makes a statement about themselves, don’t dismiss them. If you don’t know what to say, just go, okay, can you tell me a little bit more? Maybe they just do it in a conversation between doorways. Can you say, do you know what, I’m really sorry, I haven’t got time for that. Is it okay if we make an appointment? Let’s make a meeting and then just listen to them because that’s just the tip of the iceberg. They hopefully will then share other issues they have. And it’s so empowering because when I started Menopause, I had a manager and a line manager and the line manager was an older woman in her, well, older. Her but you know the other one was like in her 30s. And I went to her and she shared with me that she thought she would go crazy the first two years in menopause and I felt so relieved. And I, you know, when you feel heard and seen it breeds loyalty because people, don’t just work for the wages, they work for the people they respect and I loved her so much for sharing this with me and I felt so much better. So believe people, let them speak, take the time to get to know them and what their issues are and then clue yourself up on this. Access to work you’ve never seen or heard about it? Go and read, Google, make sure that you manage people holistically. And that doesn’t just mean their performance. There is a person in front of you who can’t leave their private life at the door. They come with all their issues and that might be health issues. And I think the more they feel seen and heard, the more they will support you in your job and make your job much easier. And so you might be in that situation one day as well and need the comfort and the understanding. So it’s just good to be good to each other, I guess. 

  

Esi Hardy (Host): 

Completely and I also agree with the sentiment that the first two years of perimenopause I do feel like I’m going crazy. It’s almost like relearning yourself a little bit isn’t it? 

  

Teresa (Guest):  

I thought I have to give up my job. I’m like, is no way can do this another four years going through this, you know? So yeah, it seems to be a very common thing, but we can’t really talk about it. Again, there’s a bit shame, isn’t it? can’t still care about flushing my brain fog and thinking I’m going crazy. We don’t. 

  

Esi Hardy (Host): 

Yeah, and losing your temper at the drop of a hat. think the worst moment for me is when I yelled at a client. That was not a pleasant time. Luckily, was really, really understanding. But yeah, no, it wasn’t one of my finest moments. 

  

Teresa (Guest): 

Yeah. And it’s so lovely when someone else goes, you know what? I totally get you. And then you can de-stress. 

  

Esi Hardy (Host):  

Brilliant, excellent. So I would love to just finish off. So we’re coming to the end of our episode today. So I mean, you’ve given a lot of kind of advice as to what people should do and how people should be compassionate about themselves and also towards others. Is there a specific call to action you would like to share? Or do you think we’ve covered the call to action? 

  

Teresa (Guest):  

Well, I will share a 10-point PDF for employers, like a checklist, what I think they can do so they can access this. And I do workplace training because there are losses in being diagnosed. I grieved for six months. I’m a grief educator, but it’s not only about bereavement. I really grieved for six months because I realized I missed out on uni. know, last minute I cancelled my uni place. I missed out on so many things, on friends, on opportunities. And it’s really hard for people to recognize this. So if anybody wants a bit more information or just have a chat how they can support their employees with coaching and mentoring or a training course, then please get in touch. 

  

Esi Hardy (Host): 

So, Teresa, we want to put a few signposts of the links that you talked about in the show notes. Can you just run through those websites again for us? 

  

Teresa (Guest):  

So the access to work so people can easily apply themselves and then also the right to choose for Psychiatry UK and ADHD 360. 

  

Esi Hardy (Host):  

Awesome thank you very much and we’re also going to share the book what was the book called used to choose I’m definitely reading that next in the show notes as well so thank you so much Teresa and look forward seeing you again 

  

Teresa (Guest):  

Refuse to choose. Thank you for having me 

  

Esi Hardy (Host): 

Bye.