Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode!
Welcome back everybody. I'm always so glad you are here to join us for another episode of Mothers of Misfits. Before we dive in with our guests today. I just want to say thank you. Thank you. Thank you. I am always humbled and amazed when I watch the metrics for how many people are listening into this podcast and making a difference.
We're at, I think somewhere between like 500 and a thousand downloads a month, which is amazing. As you've heard me say so many times, we're in the top 10% of podcasts worldwide. This is just so exciting and we could never, ever do it without you guys. So thanks for being part of The M.O.M. Community. I just can't tell you enough how much I appreciate you.
I'm so glad that you show up. If you're new here, you're so welcome here. We hope you keep coming back every week. And if you love the podcast, a favor I have to ask of you is please review it. You can go to our website and there's an easy way to review it from there. You can go to apple podcast, review it there, but that's how we can spread the love and help others also learn how to advocate for their kids in a one size fits all world.
So thank you again. And with that said, I'm really excited to introduce you to our guest today. Her name is Sara-Louise Ackrill. She's the founder of a social impact company called Wired Differently, which works a hundred percent in neurodiversity. Sara-Louise was diagnosed with autism herself at the age of 38. Sara, thank you so much for coming on.
Hi, Emily. Thank you ever so much for having me.
Yes. And as you can tell, probably already by how Sara is talking she's from London. So she really worked her schedule to make this workout for us to connect. Another perk of podcasting is you just get to meet the most incredible people from around the world. So I am so excited for this conversation and like always, I just want to dive right in.
I talk a lot about advocating for our kids and then ultimately empowering them to advocate for themselves and you too believe that it is just so important for us to encourage self-advocacy, but particularly in neurodivergent people. So can you talk about why learning to be your own best advocate is just so important for this community
Yeah, absolutely. Emily. For me, I call it a health insurance plan. I think that the difference between me getting my needs met a note is that I have become, I would say a good communicator over the years. So a lot of what I do across all of my projects is actually training people to be great advocates for themselves.
One thing that was quite telling recently was I was working with a young man and his, mom. And I said to him, what do you think about the terms Autism, Asperger's, Aspergers, however you want to pronounce it. And you're a divergent, you're a diverse, you know, language is important and it's very personal.
And he sort of, wrinkled his nose at me. And I said, look, I know, I know through our sessions, I get the feeling that you're not keen on these words, but you're going to need to use them. And I said, what do you do when this comes up? And he just said, well, I don't mum says it for me.
And then I sort of thought. Ah, okay. This is an issue here. So how to chat with mom because it's not the usual in one-to-one coaching and therapy that you would have the parent there too. It's not family therapy I'm doing, but my goodness, the insight of parents is so valuable, you know, ignore that at your peril and their knowledge on their children and the young people is hard. One. So it's a gift to have that in sessions and. Boundaries and rules and language and, you know, there's lots of signals that the young person can make when mum's no longer required. But if you can tread that fine line, it's really valuable to have the input.
And you know, we got to know that in the case of this particular young person, yes, they weren't keen on their, on their labels and no, they've never had to use them. So. Really really valuable information. So being a communicator is super important and I think never more so than when you have a disability or you're in minority population and we are a sizable minority. We make up 16% of the population neurodivergent people.
I haven't heard that stat before. Let's break that down into more practical terms.
This concept of self-advocacy. sounds good. But what does that look like? In other words, what are some very practical strategies that parents can use with their kiddos to help them grow into fantastic self-advocates.
I think there is a time for speaking for people and there's a time for letting them speak for themselves. So I understand that when a young person has say a retrieval issue or, you know, this could also be your partner, and they don't have time or space in a certain situation it's, tempting and sometimes necessary to speak for them.
But I think if you just wait a few more seconds, it's incredible what comes out. And sometimes the young person will tilt their head or they'll wrinkled her nose or they'll roll their eyes or they'll look really kind of put out. And if you just say, well, what does that mean? What are you saying? The next thing that happens is they'll tell you.
So sometimes it's just leave that extra space and then have a think about what is it we could do here if you weren't around as the parents. So another young person I worked with recently, um, it turned out that he wasn't leaving the house. So we kind of brainstormed this and problem solved it. And it came to two things.
He felt that there were two reasons he'd leave the house. One was to get a bus and one would be to go to the barber. And he said, I can't do either. Because when I go non-speaking I can't communicate , I can't do what I'm supposed to do. So mom comes with me to the barber and says, this is how he needs his haircut.
Mum comes with me on the bus and I said, okay, I'm going to teach you something, and I basically taught him how to make little sort of flashcards or communication cards on his smartphone. So he could literally just swipe across on his phone and show it to the bus driver. I have done this myself. It might be hard to believe, but I have definitely caught my non-speaking times, particularly in airports or when I'm traveling generally, I kind of go to pieces a bit. And it's just little strategies like that. And the young you're not started leaving the house and grew his confidence thinking I need mom in order to, and this was a young, a young chat with good grades in school, friends... lots of boxes were ticked... but he just couldn't communicate for himself. Couldn't say what he needed. Couldn't get his needs met.
I heard so many good things in what you just said, but the two things that are really jumping out at me is pausing. As you said, not jumping right in to take care of their needs on their behalf, but giving them that space and opportunity as uncomfortable as it might be at first, for them to step in for themselves.
I love that. And then secondly. I love that concept of a mental dry run. And I think that's good for any kid. no matter what their struggles might be.
I know for my younger son, he's a real planner. And if he doesn't know what's about to happen, particularly in instances of change, because he's also a risk mitigator. That's very scary for him. So I could say this is a great tactic for all kids. When they're something new, something they might be fearful of or growing independence.
I just love the simple exercise of talking out what the process would be. What does that look like? Who are you going to encounter? Who are you going to talk to? And lets solve for So none of it feels unexpected and how simple that is, but so powerful as you described with that young Good for him. That's awesome. That's exciting that he's now out doing this thing.
So let's switch gears here a minute. And let's talk about the link between executive functioning and how our brain is wired to self-esteem. Can flush that out for us?
Oh, goodness. Okay. I had this conversation with a doctor recently who refers people to me and he was saying to me, wow, it hadn't ever occurred to me. The executive function could relate to how someone sees themselves and how anxious and depressed therefore get. So I was explaining this to him and it's true that over here in the UK, we tend to bundle, neurodiversity in with mental health and mental health services see about 20% of our needs for various reasons.
But they all, overlap a huge amount. 80% of us have mental health issues. So I would say in my private practice and when I'm training, one of the biggest reasons for low self esteem, is that people. Well, we're all very ableist so we may have a disability, but we're still ableist towards ourselves.
So you know that whole thing where you try and do something ostensibly simple, and you tell yourself why can't I do this? It's easy. We have to really revise what is hard and what is easy because it isn't uniform. And it doesn't matter that somebody has a, first degree in something, but they're finding it hard to plan the diary or plans to go to the store or whatever it is.
Executive function, you know, it's things like working memory planning and organizing, initiating a task, it's things like emotional regulation, and basically if you break a task down, one thing I do is I use voice downloads. So I know that I get tripped up by the craziest things that I used to think of as small.
And now I'm just like, This is my skillset. These are the things I'm not so good at with no judgment. And it takes a long time to get to that level. And so recently a client was saying to me that one of the issues was they feel like a failure. And actually when it came down to it, they weren't able to finish any of their schoolwork.
So they were having meltdowns all through the summer. And school was approaching or college was approaching and basically the meltdowns were intensifying. So it became an every Sunday, they were in the bedroom and every Sunday they were hair pulling or skin pulling or, in some other way, being very, very distressed and lots of negative.
Self-talk lots of criticizing themselves out loud to the parents. And actually it was, so it was so rewarding and also, so I can go making in a way when it came out, that the reason for all of this was they weren't getting enough time to finish their work. And they felt like a failure. So they'd go into school, probably exhausted from having spent the weekend, melting down, pick themselves up in a sort of little bundle, a little vulnerable bundle, went off to college and dealt with all that staff.
And then through the day just got more and more downtrodden and depressed because subject after subject was being left unfinished. So at the end of the day, they just had, you know, zero spoons left , and then had to pick themselves up again for the following day. And you can see why it was just, permanent meltdowns, but the college had no idea that this person, in fact, they'd not even offered them extra time and they'd spent over a decade in special education as we call it here in the UK.
And then now in mainstream, And they've not had any help with bridging that gap. And so that's an example of how executive function basically, you know, when you find yourself saying, God, I'm so stupid, I'm so useless. Why can't I even it's generally when the even comes out that you're being the most ableist, you know, And it is pretty depressing.
I have a specialist VA service on one part of my business where I support entrepreneurs who basically hate, and don't necessarily manage their people work very well, but they're brilliant at other things. And sometimes I have to get through my own struggles with executive function to support them.
And I find myself at the gym along on the treadmill with my download all my iPhone just going, okay, why is this task bugging me? What am I worried about? What's the worst that can happen. And literally downloading it and talking it through because we need to get manipulate and process the forget sometimes to write things down or voice download, and then break things into pieces. So the kind of chunking techniques basically. In order to counteract the executive functioning issues, but it trips us up. And then when your client changes or your job changes, there are yet more executive functioning reasons to trip you up.
So you can see how, if the rug is being taken away from under your feet all the time. It's hard one that self-confidence, you know, and it's hard to hang on to. Just be aware that you can build your competencies with executive function and then things will change and then you'll have a new set of challenges. You're still not stupid. still not incompetent.
Boy that self-talk can be so powerful in either direction. I couldn't agree with you more about brain dumping, getting things out of our brain and in conversation or on paper, in some kind of format that we can at and solving for. I have an exercise that I do with my clients. It's called The Blank Paper Exercise.
And it seems so simple on face value, but for all the reasons you just described, it can be one of the most impactful things that I do for myself and with others. Because if we have this conversations with ourselves or questions, unanswered questions that keep swirling in our heads. They keep us stuck in that cycle, but unless, or until we get it out of our heads start answering those questions or dealing with those thoughts in a critical objective way we can't move forward.
Again, so many of these principals are transferrable to anyone and everyone, which I love, but particularly the neurodiverse community. And I And think a lot of what we were just talking about couples well with my next question, which is that
you highlight the coupling if you will, of ADHD, with issues of emotional regulation and also rejection sensitive dysphoria.
So first off for those who are not familiar with those terms, can you explain what they are and then tell us how they impact neurodiverse community, but particularly those with ADHD.
Sure. So 99% of people who meet criteria for ADHD, struggle with rejection sensitive dysphoria, and for some reason, we just aren´t talking about it and here in the UK, the month of October is, and has been, ADHD awareness month. Um, so, you know, you think about ADHD and even me, you know, it used to be tempting before I had so many clients on that part of the spectrum to think, you know, the naughty little boy or the perceived as naughty little boy, uh, people who just seem to have a bit too much energy, a little bit too hyper. When I was growing up, it was all put down to E Numbers and foods. Um, and you know, things like lack of focus in the public consciousness, unfortunately they're still not accommodated.
Um, you know, people would still find it shocking if you get up and start moving during a zoom or do all the things you need to do when you're ADHD. So we, again, we have to question ideas of normal so we can accommodate people, but the rejection sensitive dysphoria, it's horrific. I'm going to be very, very frank because I quite frankly, I have it.
I have it as part of my diagnoses and it's quite horrific. So I'll just quickly explain, doing something like this. This is my, you know, what I love, this is what makes me feel alive. And I'm grateful for the opportunity to talk as a professional and as a diagnosed person, myself. But that's definitely a part of all of this that is not so fun.
The RSD, so I've had three attacks this year. I call them attacks or episodes, where I think the first episode this year was going on a picnic. The second was just going for dinner at friends. And the third was a wedding abroad. And after each of them, I ended up with, suicidal feelings. I think I started sliding and then within say three days, I ended up with suicidal feelings.
So just to be just to differentiate, I wasn't planning to harm myself or anybody else. I hadn't thought through a plan or anything, but the feelings themselves are pretty terrifying. And, it's basically a feeling that comes on when we perceive or receive an actual rejection. And these can be of varying kinds. Their really not obvious sometimes.
And it's not an ego thing. It is a physical pain. So the day after I crashed in Italy, I actually felt like somebody, my, my insights felt like a smashed up nightclub. All I could think of was my insights were just broken glass everywhere. It was like the debris you'd have after a big bar fight or something.
Really physically bruised, uh, jagged interactions with everybody felt physically painful. There's a real physical element to it. It's horrific, and whenever I mentioned it to people, they will kind of look at me and say, oh my goodness, I didn't know. There was a name for that. And I really want it to be out there because it's frightening.
Recovery is very, very difficult. Recovering your dignity, whether people saw you in that state or not, you are filled with shame and then the shame is equally very dangerous. This is what I want people to know about ADHD. Yes, 30% of entrepreneurs have it. Um, yes, it, it is wonderful when it's harnessed.
I wouldn't be without it, despite the RSD.
But so many people:
A. Don't have diagnoses for neurodiversity because we class them as diagnoses of privilege in the UK to get a diagnosis for autism or ADHD. You need about a thousand pounds
(B.) Or you need two years through the public system. The public system will only pick you up if you have very obviously traits and again, male traits as per child, because society is structured in a way where we sort of expect people to grow out of these things at 18, come with us for life.
So yeah, I want people to be aware that most people are self-diagnosed or maybe not most, but many people. So there's also because we have this real, fastidiousness and this real loyalty, and value of genuineness and authenticity.
Imagine what it does to someone to live with all these very painful, interconnecting conditions that they can't get diagnosed. So they're sort of feeling like they live a lie. I mean, I have so much empathy because until I got my formal diagnosis, I felt that way. And that made me feel very, very desperate at times.
But the reality is it's very inaccessible, to get the actual, you know, label as it were. So. Yeah, it's not all super powers. It's not all, you know, there are definitely days. I feel like I have magic in my fingers and everything I touch is going to go well. And it's a high, you know, it's amazing. Um, but there's a dark side that we also need to talk about and we need to hold those two realities.
I think when we talk about Autism and ADHD.
Well, Sara, thank you so much for opening our eyes to the reality, to the balance of both sides. spot on that if we, I think over-exaggerate the goods or the bads. We're doing a disservice to ourselves and to the folks who are experiencing these things. I'm just so grateful that you're willing to be open about your personal experiences too, because that, I can't imagine I too had no idea what RSD was prior to meeting you.
And that sounds horrific on its own. But as you said, it's coupled with other diagnoses. So, I, again, thank you for coming on.
For our listeners that are interested in the work that you're doing, how, can they get in touch with you?
I'm very active on LinkedIn, but I would say buckle up because I'm quite open. If you look me up on there, I'm very honest. So I am a therapist, I am a coach, I'm also very committed to my, to being real. And actually, I would say every time I post about a meltdown, I do get messages behind that from people who, when you're a divergent who see that positively.
But I can also imagine that if I was neurotypical and I had neurotypical clients that would be seen as, really kind of risky and possibly irresponsible or unprofessional. It's just not the world I live in. It corresponds well with the person I am. So LinkedIn, definitely Sara-Louise Ackrill. My website is www.WiredDifferently.co.uk.
And I want to say also, I'm not a parent. Full disclosure. I say this to my clients. But I have so much respect for parents and so much respect for the parents of our children with special educational needs.
So I want it to big you guys up because I have a lot of respect for you.
What a beautiful message of encouragement. Thanks for sharing that, Sara. And I know everyone listening feels your authenticity and realness behind everything you do and say, so thanks again for coming on.
Thank you so much.
Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.