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NeuroAccessibilty & being a Neurodivergent Parent with Annie Crowe

Exploring Neurodiversity Podcast – Episode 12

by Adina Levy

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Show Notes:

In this episode I chat with the wonderful Annie Crowe. Friend, Neurodivergent Empowerment Coach and NeuroAccess Consultant who brings her lived experience as a late-identified Autistic ADHDer 2e PDAer, together with her professional experience as a human rights lawyer to help neurodivergent adults gain the skills, confidence and community needed to live their best neurodivergent life!

We go all sorts of places in our chat, including:
β€’ How healthcare settings can be more NeuroAccessible & supportive for neurodivergent people
β€’ What to do with non-affirming information that many of us learn at university
β€’ How Annie advocates for her son’s needs with his childcare educators… shifting their perception of autism to a more strengths-based understanding
β€’ Some great nuggets of advice for neurodivergent parents
β€’ Using tech tools for ‘knowledge management’ – technology that supports our executive functioning challenges

Watch our interview as a video on YouTube if that’s your groove! https://youtu.be/6IpaIvNXGL0

LINKS:
Annie’s Links – https://linktr.ee/anniecrowe
Princess & the Pea Podcast – https://pod.link/1621639421
Annie’s book ‘NeuroAccessibility: How to Build Accessible Healthcare for Neurodivergent People’ – https://www.amazon.com.au/NeuroAccessibility-Accessible-Healthcare-Neurodivergent-People-ebook/dp/B0BZL7HGKH

 

 

Transcript:

Adina: Welcome to the Exploring Neurodiversity Podcast. I’m Adina Levy from Play Learn Chat. I’m a neurodivergent speech therapist. And I’m obsessed with creating a world where neurodiversity is understood, embraced, supported, and celebrated. Join me as we have conversations about autistic, ADHD, neurodivergent experiences, and I share how you can support neurodivergent children in your world.

Let’s all work together to make change where change is needed so that the world can be a more friendly place for neurodivergent people and for everyone.

A quick content warning. We discuss suicide and mental health in this episode.

 

Hello Annie. It is so awesome to have you here on the Exploring Neurodiversity podcast.

Annie: Thank you for having me.

Adina: Very excited to be here. It’s wonderful. It feels like we’re not meeting for the first time, ’cause we’ve been chatting for quite a while online.

Annie: We have, we have. We’re old friends already.

Adina: Exactly. So for those who don’t know, the wonderful Annie Crowe, let me introduce her.

She Is a wonderful human rights lawyer, disability and mental health advocate. And she’s the founder and lead consultant of Neuro Access a consultancy specialising in healthcare equity and accessibility for neurodivergent people.

I have to say, I’m not even halfway through all the many things that Annie does. She’s got many hats. It’s wonderful.

Annie: I do. It’s the ADHDer in me.

Adina: I, yeah, definitely. But you’re using it for good, which is wonderful. Yeah. Annie’s is a globally recognised thought leader on neurodiversity and speaks at national and international conferences on the topics of neurodiversity disability mental health, she is a proud autistic, A D H D woman, mother and advocate, and she has her own podcast, the Princess and the Pea, if you don’t already listen, please go and listen. I’ll pop all kinds of links to where you can find her in the show notes. She is also another hat here, a neurodivergent empowerment coach, and she guides twice exceptional adults on how to self-advocate and build accessible lives through her princess and the P Academy, which I’ve heard wonderful things about. Annie’s first book, Neuro Accessibility – How to Build Accessible Healthcare for Neurodivergent People launches on the 3rd of October, 2023.

Amazing. And it’s already on Amazon for pre-sale, so I will pop a link to that as well in the show notes.

Wow. Annie, you’re a busy bee.

Annie: Oh yeah. I don’t sleep much. No. I like getting busy. I’m actually, almost finished my second book that comes out next year, that I started before this book.

That one’s focused on, neurodivergent pregnancy, birth and beyond. Which was really the big trigger that got me into this space is. You know, I found out I was autistic in A D H D and then we decided to finally start our family, which we’d delayed for so long ’cause of my health problems and whatnot.

And, uh, it was really realising that facing the health system that I’d already faced for a good decade plus intensely, uh, did not improve with the label autism. I guess I expected that health professionals would, to an extent understand that I had different sensory needs and what to look for or ask for or adapt, and they didn’t.

And so I started speaking up and, uh, yeah, I, because I have really complex health, I wear quite a few hats in that space, but my, probably my special areas are, pretty much anything do with mental health, but eating disorders, suicide prevention, autistic burnout. Everyone asks me to talk about burnout.

I wonder why. I’m always like, is this ’cause I’m like always burnt out and like, or on the border of burnout anyway. Um, and yeah, and the interaction with physical health as well. Cause I don’t think you can really separate them. Um, and a lot of autistic, ADHDers tend to have complex physical health, whether that’s gastrointestinal issues or hyper mobility Ehlers Danlos Syndrome.

There’s lots and lots of more common things in our population. And what that means is we have a higher likelihood of being a part of our health system and so we need accessible care.

Adina: It is, so, so important. And not just from a theoretical standpoint, but I’m currently dealing with all kinds of angles of the medical system as well and just sometimes just utterly shocked at how little people know.

And then I have to think back and I go, well, how much did I know about? Let’s say high masking autistic like us. Not that much until, you know, even a few years ago. So it’s not really an excuse, but it sort of starts toexplain where things might be.

Annie: Yeah, absolutely. And I think you know, our health system is hard for everyone to navigate. But I think, it just adds a layer if you have any kind of differences, um, to try and have your needs met because so much of the research and, education is based on this one type of human, which is usually a white neurotypical man.

And so most doctors, and health professionals, dieticians, allied health professionals like yourself, and they get taught textbook cases. And I always joke that I’m I like the term twice exceptional. A lot of people don’t.

But, I like it in terms of, I’m always the exception to the rule in every way. At least once, at least once. And that’s very, very true, uh, in all settings, but especially in health settings where, you know, um, I have adverse reactions to medication, I have different symptoms than what’s expected for certain issues that I’ve faced. I’m always not fitting in a box. So, yeah. And that’s something that is incredibly important for health professionals to understand because how else are we all going to access proper treatments and support if they’re missing key signs and not adapting their own knowledge and expertise to suit our biological needs.

Adina: Absolutely. And there’s both, you know, the aspects that you’ve touched on a lot, which is a lot of the co-occurring conditions that are pretty common that people should know about. We would hope. And then there’s just how accessible it is to even make an appointment, to know where to go to sit in a waiting room.

Just last week I was in a waiting room that usually I’ve been there way too often. Usually they’ve got the TV blaring. Yeah, everyone’s late there, so you’re in there for quite some time. And I bring my laptop and try to get productive, but it’s a really distracting place.

And I walked in the other day and the TV was off and I was thinking, This is good. This is nice. This is okay. Like I’m okay here right now. Yes. And um, a moment later, the receptionist comes by and goes, oh, why is that TV gone off again? And she turned it on and I thought, and it was so loud and unnecessary.

Yeah. And they were only about two other people there. And then I thought, why am I not standing up and going, um, Hey, can we turn that off? Like, or can we turn it down? I didn’t advocate, I did not self-advocate.

Annie: You’re not alone.

Adina: That’s, there’s that little glimmer, which we, you know, I think it’s like the bingo card.

How many times will we say internalised ableism in our chat today? Yes, true. That little moment where I went, oh, I shouldn’t make a fuss.

Annie: Yeah. I think it’s more than that though. Like I do talk about internalised ableism a lot, um, and it’s really important, but I think deeper than that, a lot of us grow up getting told that we’re too much or too sensitive.

A lot of the adults I help coach and work with, come with a nice side of trauma. And that really, you know, in terms of the mental health aspect, it really impacts us. But also from an advocacy standpoint, it’s really hard to speak up and articulate your needs when you’ve spent your life being gaslit and invalidated and dismissed, bullied all these things that, you know, even though you know something as simple as asking them to turn the TV off, which most of the time they’d probably just say Sure.

And occasionally you’d probably be faced with, oh no. And then once you explained why you needed it, generally 99% of the time they’ll do it right. And, you know, that’s a pretty simple process, but it’s really hard. And this is a lot of what I teach in my academy is. Helping people find their voice and realising that no matter how small these things are, they matter and that they deserve to have their needs met.

‘Cause that’s really, that’s a huge barrier for us, is that even though, first of all, it’s about finding out what helps you and what hinders you, and being able to articulate that sometimes to the level of not just that you don’t like TV on, but like specifically why is it a sensory thing?

Is it a distractibility thing? So you can’t focus on your work while you’re sitting in a wait room? You know, there’s lots of different layers there. Right. But then beyond that, it’s actually being able to tell people this and speak up. And that is usually one of the biggest barriers because most of us, autistic ADHDers we deep dive into this stuff when we’re diagnosed or I identified or we figure it out.

So very quickly, most of us learn the basics of what is executive function, what are sensory issues, what is double empathy, problem, social stuff. but really the difficulty comes in when it’s about communicating that to anyone, whether that’s a school teacher, an employer, a doctor, a medical receptionist, your partner, your child.

That’s really the layer that most people really struggle with for so many reasons.

Adina: Winding back a little bit, you said, You matter. Something along the lines. You matter and you

Annie: deserve, you do matter.

Adina: You deserve to get the support that you need.

Yes. Which is such a, it’s like a penny drop. I mean, I don’t know that any of us can hear that enough.

Annie: I agree. I think we need to yell that to the rooftops to ourselves. Yeah. A lot. Yeah. Yeah. And I think like as well, just talking about the, you matter aspect, it’s like, it’s so deep. I think anyone that experiences any form of oppression, whether that’s racism, sexism, ageism, ableism, I think that’s a really common thing for us to not value ourselves and believe the lies that society can send our way about our worth.

Especially if it’s lacking productivity, which our society is obsessed with. Um, but even more so when it’s, it’s been through your, your childhood period. And I guess, you know, I do focus on adults, but most of the adults I support have neurodivergent kids, um, and are healing their own internal neurodivergent kid.

So I do do a lot in the kids space as well. Just, I don’t do kids consultations, but I think it’s really important because, you know, if you do have a neurodivergent child, then really what I like to talk about is what can you do to support them, because the current system we live in is not great and it’s going to take quite a while to fix it. And like people like you and me and lots and lots of people are working hard to try and fix it, but these things take time. And so it’s really about like, how do we not only survive right now, which is hard enough, but give our children and ourselves the chance to thrive. And that’s really, really hard.

So a lot of the time what I’ll talk about is things like learning how to self-advocate, not fixing your child, but fixing the systems around them, or at least building them up enough that they know that they deserve not to fit in it. Because a lot of the times, you know that narrative we tell ourselves that we don’t matter, or whether that’s overt or subconscious a lot of the time, what that leads to is the constant microtraumas of being dismissed and slowly losing your voice. And for me, before I even found out about being neurodivergent, I spent so much time in the health system, um, you know, as a fully qualified practicing lawyer, not having a voice, like trying to advocate for myself and being shut down at every corner by these professionals who were the experts and they told me what to do and I should do it.

And if I failed, then I was the problem. And it’s really hard to work against that. So really the one thing that getting a diagnosis did for me is it gave me the framework and the language to learn how to speak up for myself, but also to accept who I am and to start building on the foundation of that self-love.

That self-compassion, self-esteem, self-acceptance, whatever you want to call it. That really, it’s almost like you need to counter the narratives that society is sending your way. And that in turn gives you that inner strength to fight this system, that it’s going to be a long time fighting because no matter, like, there’s a lot happening right now, with the National Autism strategy and you know, we’re start, we’re fighting to get ADHDers included on NDIS.

There’s so much happening and neurodiversity is becoming more talked about, more understood, but we’re still barely at the beginning of this. So I guess really it’s coming back to what can you do right now in terms of making your life or your child’s life, or the life of someone you love or support better?

Adina: It’s such a big mission.

Annie: Yeah. It’s not easy.

Adina: I know for me, I’m a bit of an optimist. I, so I just try to look at like what’s working and what’s in my little echo chamber bubble. And that feels inspiring and exciting and you see the change happening. So good. I don’t look too far into where change is not yet

Annie: happening.

Yeah. Whereas I’m an existentialist, I’m always like, what are the biggest problems and how do we fix them? And I will not rest.

Adina: I hear them and I see them and then I have to turn away ’cause it gets me down. But, you know, there’s value to both

Annie: approaches. Yeah. Yeah. No, I, I wish I was more like you sometimes ’cause I’m like, I don’t appreciate the small wins very often and I have to remind myself that they are important too.

Notice. And just get really, down about how hard everything else is. But yeah.

Adina: Yeah. The day we’re recording this, which is 22nd of May, there’s an article in ABC News that actually came out, which I is quite heartening. It’s not the whole way there. It’s called "hospital emergency departments can be difficult for people with autism but Tony’s helping to change that". Loving the language. They’re

Annie: go, yeah. At least they’re talking about it.

Adina: And the journalist Nick McAllister is autistic, so, you know, there’s some good journalism happening.

Annie: Surprising they’ve chosen that language if he’s autistic, but sometimes that’s just their policy or someone overlooked like above them because they are improving. They did a lot better at the end of last year. They had a couple of autistic journalists and they were using identity first language.

And I was like, oh, this is so good. We’re changing. And then we’ve gone backwards a bit.

Adina: I think it was a whole article about identity, first Language.

Annie: Yeah. There was.

Adina: So, you know, they’re getting there it’s pretty encouraging. Um, there’s something that I really loved, which I wanted to quote cause I think it’s so relevant to what we’re talking about this, um, which is so close to our hearts accessibility and neuro accessibility, which is an Annie Crowe term, which we love.

Annie: Um, my favorite word

Adina: It’s beautiful. There’s a quote by Dr Dinesh Palipana. Mm-hmm. Uh, who himself is quadriplegic doctor,

so Oh yeah, I know who he is. That’s great.

Cool. That’s awesome. He said a few really lovely quotes. So "the way we exchange information and the way we communicate needs to be person-centered". Love that. "At the end of the day, it’s really about asking what’s best for the patient", he said, and I think that’s brilliant. So, you know, there’s this recognition that the supports that we need are going to vary from person to person.

That’s awesome. The bit that I’m thinking agree and I’d love to change, is the burden being on the neurodivergent person or the disabled person to come up with the strategies and supports that they need. Yeah, that’s a lot. Like I think you and I so much are probably, we’re really aware probably of what we need most of the time.

Yes. And let alone, you know, knowing what you need then asking for it. They’re two big things. Wouldn’t it be nice if the waiting room just recognised that maybe it’s just more accessible anyway, to have the TV off, full stop. Maybe go sell the TV and donate that funding to charity.

Annie: Yes. And radios.

Thank you. Yeah. Yeah. I mean, these days everyone has a phone on them, so who really needs that on? And also I was in the GP the other day and they have this TV on like a medical channel, which most GPs have this medical channel on, right? And they were talking about ADHD in kids and it was so pathologising.

And then they were talking about weight loss and that was extremely pathologising and harmful. And I’m also a fat person and I say that in a pride way. There’s just so much lacking in that space. I’m like, I, first of all, I don’t want to listen to this tv. Second of all, I don’t need these kind of messages coming at me when I’m arming myself up to talk to doctors who even well-meaning doctors that I have these days that are usually the better ones.

Um, it’s still always a fight. Like, it’s still always me trying to say, this is my experience, please believe it and help me figure it out. Because most of the time we’re not believed for our differences and that is probably one of the most fundamental issues, in all systems.

Adina: Absolutely. The solutions, ’cause there I go. I’m like, and how do we fix this?

Annie: Yeah. Love it. Love it. Go.

Adina: If we can zoom out and go big, what would you love to see on that systemic level? So, you know, we, the individuals are not having to put our hands up and ask for accommodations, but just the world is there and ready and accommodating.

Annie: I could talk about this for days, okay, so this is kind of my jam, is that I do more systemic advocacy and, I teach neurodivergent people to self-advocate knowing that the, the systemic stuff is slow and takes time. So like I said, we’ve got this national autism strategy coming out and there’s a co-chair, autistic co-chair, and a couple of autistic people on the oversight council that just got announced. And that’s great. Right. But I’m worried that it’s not enough. So, you know, is this strategy or is any policy and strategy, is it tokenistic, is it deep and meaningful?

From the top level policy changes that are happening, no matter what level of government, what level of any place, system, it, it really needs to be autistic led. I spoke at the National Suicide Prevention Conference the other day. And myself and Jen Blyth, who’s the CEO of Deaf Australia, were the only two disabled speakers in the entire week.

And Jen and I had a good chat after her presentation and then she came to mine and we spoke after that again, she’s fantastic. Many of you might have heard of the saying nothing about us without us, which is a very strong a disability call to action. And she said she prefers to say nothing without us, full stop.

And I love that because we are everywhere. And, you know, whether you are deaf or neurodivergent, we don’t discriminate. We are in every intersectional community. Um, and so we should always be included. And so often that’s not like we’re barely starting to be included when it’s about us, let alone in general.

And so I think beyond these specific strategies, uh, and policies, we need to be included in all aspects of government legislation and policy. And so, um, some of the stuff I do, I work with the National Eating Disorder collaboration in some of their projects to make sure that they’re including neurodivergent people. We didn’t talk about this at the start, but I started a not-for-profit last year, EDNA Eating Disorders Neurodiversity Australia. And the main reason I did that is because in 2021, a huge report came out by the Inside Out Institute of Eating Disorder Research and Translation Strategy. And it was the first one in Australia we’ve ever had, and it was amazing and I was so excited to read it. Very, very long document. And, there was a whole section on at-risk populations and I think they talked about, uh, athletes were at risk and, there were a few different ones anyway, but the autistic and ADHD population were not mentioned until page like 61.

And it was in a tiny paragraph on co comorbid stuff. And it just said that there was an emerging link between ADHD, ASD and eating disorders. Now that research has been out since the early eighties. That’s not emerging and there’s a lot of it. Um, and the UK are probably leading in this space. And so that fired myself up and a lot of people who were sort of advocating in the intersection of autism, A D H D and eating disorders.

So our first national eating disorder strategy is due out this year. And so my part of starting EDNA and pulling all the brains together was to make sure that that strategy didn’t do what this research and translation strategy did, which was ignore our population.

And so that’s really what we did. And, I kind of just used my skills ’cause I’ve been in and out of both corporate law and the public service for the last decade. And so I kind of understand how policy and government work to an extent and, um, yeah, kept basically, Pushing our agenda until they would listen.

And so NEDC commissioned Edna to write a huge report that’s out. That’s just phenomenal by, my two deputies who now run Edna ’cause they’re amazing. They’re both doing PhDs, in this space and all about neurodivergence and eating disorders. And now the strategy coming out in August will not only include Neurodivergence, but it will substantially include us.

Like it’s not just a swift pass by to acknowledge us. It’s actually really understanding and helping articulate the need for supporting our community. And that’s for me, what I want to see in the national Autism strategy and the national roadmap to improving the health and mental health of autistic people, which is happening alongside the strategy.

I want to see that go beyond just sort of mentioning the importance of helping our community and maybe highlighting all the barriers and issues and going towards, like, how do we help people take actionable steps to support us? Because right now the entire burden is on us to make these inaccessible, harmful systems not hurt us.

And that’s just not fair. We’re not the ones with the privilege or the power or the capacity, or the whatever you want to call it, to be actually changing these things. You know? And we’re trying, we’re clawing up trying to get help, but that’s really what it comes down to, is that whether you are advocating for yourself or your child or the big stuff like in government, all of that matters.

And all of it is needing to head towards a direction where, We’re not the ones who have to sit there and explain to every single person we come in contact with, what adjustments we need and what access we need to survive in this world. And right now that’s exactly what we’re doing, which is just exhausting and leads to burnout and poor mental health.

Adina: And what you’ve been a part of that one example of massive, massive change.

Now one thing is a policy document. The next thing is how that’s implemented. But that’s exactly, that’s amazing. It’s a start. Amazing start.

Annie: And I must say like, you know, that’s such a good point. So like right now I’m helping, the NEDC we’re working on a fertility care project, which is basically developing training for fertility care specialists. So anyone from an OB G Y n obstetrician, to a midwife or doula or nutritionist, whatever, to give care that’s like safe for people who either have or have passed, had eating disorders or prevent them from getting them ’cause it’s a vulnerable time.

Right. So I’m working with them and I’ve just developed the first draft of the consumer resource, which would be for pregnant people, going through care in terms of what they can do to, you know, have their needs met. And so in doing that, that is like on the ground, making sure that the training will be inclusive of neurodivergent people and other intersectional groups, and that the consumer resource is also thinking of us as well. So it’s like, You’ve got the high level strategy and policy, but then you’ve got the implementation aspect and I guess more of the clinical side of it. I think a lot of people don’t talk about this stuff, but we don’t have to wait until we’ve got some strategy.

We don’t have to wait until we’ve got these clear guidelines getting pushed from wherever in government or power. We can actually be doing stuff live right now. So, a lot of my one-on-one consults as well are with mostly allied health professionals who want to learn how to support their clients because, most of them go through as, you know, university and training and Neurodivergence is not even mentioned, like maybe autism and ADHD briefly are, but beyond that, nothing.

So, um, there’s so much you can be doing at a more like active level as well. And it all counts as real change. And, and they’re the ones that can help feed up as well into the big picture and the government policy that can hopefully change these systems for the better.

Adina: Totally.

And I have to add that what I’m hearing coming out of the unis even now is not very different from about 12 years ago when I was studying.

Annie: No, no. Sadly.

Adina: You know, where there is disability information, it’s often not taught by disabled people where there’s information about neurodiversity.

It’s taught in that ableist medical model. Yeah. There are some unis who are doing great work. That is, that’s true. That’s very true. It’s not all doom and gloom. There we go. Positive

Annie: you are, you’re so positive. I’m like, do better. It’s not enough.

Adina: Gotta give some credit. Um, yeah, definitely. There was something beautiful, one quote from a student.

So she’s a speech pathology student. Yeah. And she did one of my workshops with me and one of her takeaways, she said, I’m going to take what I’m learning at uni and hold it lightly and then let it go. And I thought, that is so beautiful. Love that going, love that.

I kind of know what I need to do to pass and get through and see what the lecturers want and all of that. But I’m not going to take all of that, uh, university information and just go, well, that must be it. I just love that. Hold it lightly. That’s so nice.

Annie: I love that. And that’s the thing is, these degrees and they’re what they can be like, they’re very informative and it’s not necessarily that they’re teaching the wrong thing all the time. but it’s really just about acknowledging as you’re going through the, that study and further professional development that you have to constantly have this intersectional lens and you also have to constantly question everything you’re learning because so much of those degrees and training are deeply rooted in decades of oppression. and, you know, we are obviously just talking about neurodivergence, but that can be for people with different body sizes or skin colors or anything. There’s so, so much that we need to be constantly questioning and that’s, I guess, something that really gets my nickers in a knot when academics or clinicians don’t do that, which luckily isn’t that often.

I read a lot of studies. In reading the research, so many research articles and journal articles are, they draw conclusions that are highly problematic. So for me, you know, and I actually, I did all the science and maths at school. I was absolutely, I was going to be a doctor and then I changed my mind last minute to law.

Cause I liked Legally Blonde and a few Good Men. No, it’s, I love debating. I’ve always loved debating. And, uh, that’s a great origin story though. That’s, yeah, I know, right? Well, I’ve, I really connected, you know, legally Blonde, where they’re like, do you think she just woke up one day and said, I think I’ll go to law school?

I was like, yes, that’s exactly what I did. Anyway. I digress. The thing that really irritates me about these research articles is that research is supposed to be about like disproving stuff, right? And so you can, you can research something to an extent where you can say, well, it’s not this or it’s not that, but to say that it’s this without acknowledging all the factors that you couldn’t really understand because, you know, everything’s complicated.

So I guess I’m talking about correlation and causation. And so a lot of what I see and read are things like, um, one that I think I got on a Twitter rant about a few months ago was, um, the, A US study came out saying that women who took more Tylenol in pregnancy were like more likely to have kids, quote unquote with autism.

And I read the study and I was like, are you kidding? Like, autistic people have a higher rate of chronic pain due to, you know, more hormonal disruption, like PCOS and endometriosis, hypermobility is so much higher, which can cause chronic pain in pregnancy. And guess what? Being autistic is highly genetic.

So shock, horror, the real thing when I was reading this, I’m like, it doesn’t take that much of a critical eye to read this and go, well actually, have we ever thought about the fact that more autistic pregnant mothers would be more likely to have more Tylenol? And guess what? They’re more likely to have autistic kids because they’re already autistic and it’s highly genetic.

Yep. Not that Tylenol is causing autism. So I read these studies all the time and I’m like, who lets this be published?

Adina: I get very damn about the amount of dollars and hours. Me too. Brain energy wasted on dodgy research and I’m using like, that’s the gentlest word I can think of.

Annie: Yeah. That’s very gentle of you.

Yeah. Um, I have harder words.

Adina: Yeah. There’s many issues. And one of them that I read recently, it was an article. I’m not even going to direct people to it ’cause it’s

Annie: Yeah. Don’t

Adina: not great. It was about ABA, so applied behaviour Analysis and it was written by behaviour analysts, presumably with an audience intended of behaviour analysts to make them feel better about the work that they’re doing by basically talking about autistic people, about autistic perspectives.

Mm-hmm. And diminishing them as just not valid enough. Suggesting that behaviour analysts listen to autistic voices with "compassionate skepticism".

Annie: Oh my goodness.

Adina: What is that?

Annie: Oh my goodness.

Adina: I’m really kind. But I don’t actually believe,

Annie: pretend to care, but don’t. Oh, that was, that really riled me up. Um, yeah. Oh, that’s funny. Interesting. Yeah. Wow. Wow. It’s funny. I mean, it’s funny or it’s sad. You

can’t, yeah. Oh yeah. I have to laugh or I’ll just get angry or cry.

Adina: It’s really problematic and it comes back to what we were saying about, you know, uni students. So, hello. Any uni students listening or any? Just anyone. Yeah, just critical thinking. You just have to critical thinking. Yeah. Even anyone listening to us should think critically about Yeah.

Annie: Don’t, don’t agree with everything we say.

I, I love it when people question me. Everyone should be questioning everything. Like to think that there is one right or wrong is wrong. So this is basically what I do. And you know, it’s funny because when I was first diagnosed, when I was 28, so many years ago now, but, um, I dove into the research and I wanted to like, learn everything I possibly could on ADHD and autism.

And I drank the Kool-Aid would probably be the best way to say it initially. And I was kind of in the place where I was like, okay, now I have the answers that I’ve been searching for and what do we do about it? But the what do we do about it was always how to fix it. But the fixing it never worked.

And actually, the fixing it caused me way more harm, than actually embracing it and then using my energy rather on fighting it to actually put infrastructure and systems in place that could help me. And so I have a lot of compassion for people who are like new to being diagnosed or their kids.

And you know, the stuff that we get told is that pathology model.

The other month I was talking to my son’s daycare about Autism Acceptance Month. And, I was talking to one of the head carers about what we were going to do and she’s like, oh, I had an idea. And she pulled out this piece of paper with a, puzzle piece on it.

And I was like, no,

Adina: The puzzle piece is, uh, controversial. No, it’s pretty, uh, agreed that it’s not a good symbol for

Annie: Well, it represents, yeah. Autism Speaks, which is an organization in the US that essentially spends most of their money on how to fix autism and get rid of us.

Yeah. It’s in a nutshell, but you can research into that. It implies that we’re puzzling and that we need to be pieced together ’cause we’re so different and weird and it’s just, it’s condescending and it’s, yeah. At the best. And I think

Adina: that’s also that idea of like incompleteness

Annie: as well.

Yeah, yeah. Inherently that we’re not whole. Yeah, that’s so true. So

Adina: yeah, just skip back then. And any uh, puzzle piece iconography around autism is basically not neurodiversity affirming.

Annie: Yeah. If you have a puzzle piece, anyone who understands the neurodiversity movement will immediately know that you are not affirming like, just because you clearly have missed that point.

Um, but at the same time that, that almost worries me sometimes ’cause I see people using the infinity symbol and saying that they’re neurodiversity affirming practitioners. And then you look into their website and they use pathologising language and they’re clearly not. So that’s another issue.

Adina: There’s yeah. Layers. Layers. Critical thinking. Definitely. Yeah, exactly. So you went into childcare and then puzzle piece?

Annie: Yeah. So I said no, let’s do infinity symbol. And then we got talking and I sort of was asking her like, what their experience was with kids that they identified that needed to look into diagnosis or whatever.

And the language that she used, which is not surprising, was things like, um, red flags and problematic behaviour and issues. And I said to her, you know, my son’s autistic and he’s not diagnosed yet. He’s only two. And I haven’t, I’m going to go down that path eventually, but not yet. And she’s like, oh, I, I don’t think like, really what makes you say that?

I haven’t noticed any red flags. And I was like, no, of course you haven’t. Because the only thing you know about autism is red flags, which is actually autistic people in crisis and not autism. And I was like, well, um, he is very sensitive to light. And noise. And the way he likes to play is extremely repetitive. Um, he loves rereading the same book 10 times. And like for his second birthday, he got, a set of toy cars from my partner’s mother.

And the first thing he did was line them up in color order and then like, pull them apart and redo it like 20 times. Then she kept saying like, no, no, this is how you play. And was trying to pretend play with them. And he said, no, I want to order them. I’m like, I’m so proud. It’s been beautiful, like reconnecting with my inner autistic child, watching him.

Adina: um, just want to go and say he’s playing absolutely correctly.

Annie: I know. I’m like, that’s no, that’s, I said to her, I’m like, leave him alone. Like, he’s doing fine. I love, I do that right now with like my pens. and he loves stimming. Like he, he spins and spins and spins until he’s like falling over like a drunkard. I’m a spinner, so I did ice skating as a kid ’cause I love spinning.

There’s just so many signs and they’re signs that I know are autistic. They’re signs that the autistic community know is our DNA and inherent culture, but they’re not signs that early childhood educators and medical professionals see as those red flags. Um, and then this is where the other side of it comes in as well of twice exceptionality or not having a co-occurring intellectual disability.

So my son’s been very early in his milestones to walk and talk like I was, and so a lot of the signs they see that they look out for is delays, which is often why many women and gender diverse people aren’t noticed. And then on top of that, people who don’t have any sort of intellectual delay or other severe learning disability are not noticed.

But the problem is, is that that group that isn’t noticed, because there’s no overt delays early on, are the group that’s at most risk for things like poor mental health, suicide and self-harm in the longer term. So it’s really important to recognise these things. So once I told her that, she was like, oh, actually, now that you mention it, I’ve noticed these, all of these things.

And she gave me a bunch of examples back, including like every time they had a performer there, which is quite frequently, my son would be the only one covering his ears and I said, well, you know, and she’s like, well, in that case, do you mind if I put ear muffles on him?

I’m like, no, that’s an accommodation, that’s accessibility. Go for it. And like it’s these little things that right now aren’t a big deal, but when he gets old enough and his environment changes, they become a big deal. And it’s not always obvious that these little things are causing the overt, maybe not so nice behaviour or whatever that we question and try to change without actually addressing the root cause, which is the environment that is not accessible to our neurology. So anyway, that was really interesting and I blew her mind.

Adina: It is, I’ve gotta say such a wonderful example on many levels A, that educator seems wonderfully receptive.

Annie: Oh, phenomenal. Brilliant. Beautiful.

Adina: Love to hear that. Um, and B, just the example of how you went about advocating for your son’s needs and to educate them just to help them understand what’s going on for him and kind of open up their minds to go, actually no, we’re seeing Yeah, yeah. Now we see that. Now we see that. Yeah. Now they’re probably going to go and identify various other kids in the center too, and have a few, uh, green flags for autism.

Annie: I love that. Oh, let’s make green flags.

Let’s do it. This is so good. Well, that’s the thing. And so like she was talking to me about, um, just some other examples of kids that they’d suspected and we were talking about like how, how that plays out with parents. And often one of their biggest challenges is that they get these parents in and they’ve had to gather all this evidence and then the parents come in and they’re like, we’ve noticed these red flags.

Here are all the examples. And the parents get defensive and don’t want to hear it. And of course if you tell a parent, if they come in and they said, these are all the things wrong with your child, they’re going to be like, no, what? Not to mention if there’s a highly likelihood that they relate to those things, ’cause they’re probably neurodivergent themselves, so they’ll be even more like, I was fine, they’ll be fine.

Um, I’m like, can you imagine the difference if we approach that in a way that we’re like, we noticed these things about your kid that are slightly different to other kids, not in a good or a bad way. Just, just noticing. And we thought it might be worth looking into because they might benefit from a little bit of support or some, you know, changes in how we approach their learning.

I, as a parent would be so much happier with that. Yeah.

Adina: I’m always thinking of a correlation and I know it’s not a perfect analogy, but yeah. Examples are good. Just thinking about, um, okay, here’s Billy. I’ve always got Billy as an example. Go for Billy. Who’s Billy. And you know, the educators might say, we’ve noticed that Billy is really, really musical and Billy really.

Right. And we’ve got music instruments and we’ve got these, you know, performers coming Yes, yes. Doing dance. Um, and then Billy’s family might get really interested in that and learn more about how to promote that musicality

Annie: and how to Yes. Or like, he, he loves books and he reads them over and over, like, what an incredible focus or what an amazing, like, interest, just anything that’s slightly away from the negative only.

Yeah. Because, and that’s the thing is like, and as you know, we have just as many strengths as we have challenges. It’s just that our strengths are blatantly ignored in this world. And completely unless dismiss they’re capitalistic and they, well, exactly. Yeah. Or harm ourselves trying to like, prove them and putting our own needs at the background, which is usually what ends in burnout and such.

Anyway. Hundred percent.

Adina: Oh, I, I really love your example. I think there’s going to be a lot of parents listening who will go, ah, okay, I could have a conversation like this with the, you know, daycare or with school. Yeah, definitely. That’s super helpful. Is there anything else that comes to your mind from the perspective of being a neurodivergent parent that you would like to share with other neurodivergent parents?

Anything we haven’t touched on about how they can advocate for themselves, for their child, build up their child’s self-advocacy? Any of that?

Annie: Yeah, well first of all, give yourself a break. Parenting is hard for everyone. Doesn’t matter if you are neurodivergent, neurotypical, anything you want to call it. Um, parenting is hard, but if you’re a neurodivergent parent, there’s an extra element of hard and often neurodivergent parents don’t know they’re neurodivergent, um, because of the times we live in and that’s only starting to be more recognised.

So there’s another layer of that. But I guess I would, one thing I would say is if anyone’s listening to this that has a neurodivergent kid look into it yourself because you may be and not even know about it. And that’s only a good thing ’cause it will just give your kid more connection to you. And I think that’s beautiful.

Um, but back to neurodivergent parents, which is my specialty ’cause my partner and I are neurodivergent parents ourselves. And most of the people I help are. I guess it’s similar to normal parenting advice around fill your cup first and such. But one of the biggest challenges I personally face and I see in a lot of my clients is things like, um, as a parent, one of your main roles is to help your children self-regulate.

Right? So, you know, when they’re struggling, whether it’s with sensory overload or just, you know, emotional dysregulation, whatever you are kind of the one that has to stand by them and help them figure out how to come down from that. And as a neurodivergent parent who struggles myself with emotional regulation and sensory overload, that’s really hard.

So I, I remember doing a circle of security course when my son was born, ’cause I was curious and you know, it’s always good to learn more tools and so much of it was based on people who were able to regulate themselves. And I’m like, this is absolutely ignoring the neurodivergent population who fundamentally struggles to do this. And for me it was that internalised shame of like, I’m going to be a bad mum because I can’t regulate enough to help him co-regulate and all of that sort of thing. Anyway, thankfully my partner helped me come out of that shame spiral. Um, but it, again, it’s that nothing without us is that circle of security needs to be inclusive of neurodivergent parents as well.

And so for me it’s really a matter of, um, similar to what you would do regardless of whether you’re a parent or not, is just finding out what fills your cup, what steals your spoons. And by spoons I mean like energy. What depletes you? Um, spoon theory for anyone looking into it. What that will do is help you regulate and help you meet your own needs so that you can meet your child’s needs. And the other thing is that by doing that, You are almost modeling for your child how they can put their needs first as well. So like, if I am struggling and I can say, I mean my son’s two, so he doesn’t quite get it, but I can say Mummy needs a break.

Um, and I can go into the bedroom and leave him with daddy while I do whatever I need to do to come back down. And then I can come back and say, that was just a bit much for Mummy. Um, Mummy’s feeling fine now, but she just needed a break. Whatever, you know, say whatever you want. But I think that’s something that I lacked as a kid because, you know, my mum’s neurodivergent, she was identified after me and she never put herself first, which I think is a really common thing for women in general and mums in general, but, Um, she never put her own needs first in terms of if there was any sensory issues and to me that just meant that I had to dismiss my own needs.

So I think in terms of the first layer of teaching your child to self-advocate, it’s teaching them that their needs are valid. And you can do that by modeling. I love, I love modeling as a way of teaching in a lot of my courses, I will like, try to model to, ’cause I’m not perfect, I don’t have all the answers, right.

I’m still figuring it out. But I will try to show my, you know, I call them my warriors. Um, you know, giving myself permission to not put, like, get things perfect or giving myself permission to take a step back. There’ll be times where I’ve had some training organised and I’ve had to send them an email and say like, I’ve got no spoons left.

I’m going to need to postpone. And most of the time when I do that, In a world where when I’ve done that in the past, I’ve been judged scolded and reprimanded for it. The response I get from all these neurodivergent people are like, I’m so relieved. Like, I really needed a night off. Or, I like, thank you for giving me permission to also do this for myself.

Like we just, we don’t even know it’s an option. So first of all, no, it is an option. And I think, you know, this really ends up impacting things like, do you work for a place that allows you to do these things? Because, if you don’t, which isn’t always a choice, like there’s a lot of privilege in being able to choose your work and all of that stuff.

But that’s something that, you know, I, I guess I’m digressing a bit, but one of the things that, um, I guess mostly my dad as a kid would say is things like, you know, that’s just the way the world works or this is how you have to be in the world. And that to me never fit. Like I just was like, well, that’s rubbish.

But I totally get that fear though, because we want our kids to not be harmed and we want them to have a smooth life. And a lot of that can look like helping them walk the walk, talk the talk. But essentially if they’re neurodivergent, it’s actually giving them permission to be different. And it’s giving them permission and knowledge to learn that these systems aren’t made for them.

And there’s nothing wrong with that, but especially there’s nothing wrong with them. And that from the very beginning, it’s about trying to shape your environment, whether that’s through your teacher, your boss, your partner, spouse, whatever, friends, government Yep. To meet your needs.

Yeah. And anyone in your life that doesn’t do that, My biggest recommendation is to move, like, is to get another job, move to another school, find another partner. And again, there’s a lot of privilege in that. Um, but it’s, it’s important because I think sometimes also we can push and push and push and try to be advocating for our kids at school, for example.

And hitting a brick wall, maybe you’ve got, um, a principal or a teacher that’s not very open to learning, which happens sadly. And sometimes it’s actually just easier to move schools and to find until you find that place that does. And in, in some cases it doesn’t exist. And so many neurodivergent kids do end up being homeschooled, um, because of how our school system is.

But there are many educators out there that want to learn and are willing to listen and learn. And so really it’s about you helping your child advocate for their needs and educating these people, which again, it shouldn’t be on us, but right now it is. So, you know, listening to people like Adina and all the incredible allied health professionals out there that are leading the way in this space and helping us learn how to articulate this, these things, and really bringing your child along that journey is, I mean, obviously the older they are, the more you can bring them on that journey.

But don’t just go and advocate for them. Teach them what you are doing. And because the other thing is that I see a lot is that parents want to protect their children and then they hit a point in high school where they start freaking out because the kids are going to be an adult soon and they do everything for them, which is not necessarily a bad thing ’cause many of us can’t do a lot of stuff.

But to an extent I think. It’s so important, especially with that whole building self-worth and making them really deeply understand that their needs are valid. Um, is bringing them on that journey and, and giving them the tools to be able to articulate those things so that when they do enter the workforce or find a partner in life or whatever they do, that they have some of those foundations laid where they have more strength.

They can really have the strong foundations so that they can get through this world that we live in. That is not made for us, but we’re trying to change.

Adina: That’s it. I want to, I want to say that back to your dad. Like obviously you took his message and you went, actually I’m not okay with the world not being built for me.

I’m going to change it.

Annie: Well, I didn’t initially. I very much, I’m very, very high masking and absolutely like destroyed my physical and mental health to fit in. So I actually took it and thought, well, my dad knows best, and I thought it was wrong. I thought it was rubbish, but I also thought, well, what can I do about it?

This little teenage girl, you know? Um, so I didn’t initially take it, and go now stuff you, I wish I did. But, um, yes, eventually it did ca catch up with me like it does to most of us. Um, yeah, I had my first major burnout. I think I was 23. But even before 23 I’d had shingles twice, which is also quite common.

There’s a very well known neurodivergent advocate who’s a fair bit older than me, but like amazing, I won’t say names, but they’ve just messaged me saying they’ve got shingles again, like shingles is very much a stress response. And this is why I link health, like I do stuff in the employment and education space in the sense that our health is impacted by everything in our life.

Yeah. And so I guess linking mental health and physical health is really, uh, the, the reaction to the inaccessibility in life for us is usually poor health, whatever that looks like for every individual. For some it can be shingles, for some it can be depression, anxiety, some it can be hormonal, autoimmune issues.

These are real tangible effects. The hard thing is, is linking them to the underlying cause, which is these systems of oppression that dismiss our fundamental needs and basic human rights, which is, What I’m obsessed with.

Adina: You’re doing a wonderful job. And that answers our first question, which was, what are your special interests?

Annie: Yeah, special interests. I have many and they come and go and some are long and enduring.

Um, but as someone with, um, who really struggles with executive function, uh, one of my long and enduring special interests is personal knowledge management. Ooh. Which is basically like learning about how to be productive and. Putting systems in place that automate your workflow and make life easier. And I think that Mo, most of the people in that space tend to have some form of neuro divergence, whether they know it or not.

Um, but I, I do that because, you know, I work for myself. Um, and I like that. And I,

Adina: I want to be able to, we have to talk about this one day. We do. Ah, yes. Hey, I’m obsessed with

Annie: systems, and systems are the best automation and like going frictionless. I like my jam. Yeah. Remove the friction. That’s like the best.

Adina: Um, yeah. Researching to-do list is one of my things and yeah. Uh, one day if you want, I’ll show you my memory archive system.

Annie: Ooh, that sounds good. That sounds way better than like, research vault. It’s pretty much research in my own brain. Yeah. Well, no, it’s funny, I’ve, I’ve probably got really similar one.

Um, have you heard of building a second brain?

Adina: Uh, is that kind of the idea of externalising all of this?

Annie: Yeah. Yeah, yeah.

Adina: Memories, knowledge, tasks,

Annie: yeah. Things like that. But it’s, it’s very much down to like personal knowledge management stuff. So the guy who wrote a book about that called Tiago Forte, he wrote it because he got some health issue I think in early adulthood where he had issues with his memory.

And so he was figuring out how could he externalise stuff so that wasn’t an issue for him. Um, and so he came up with this building a second brain, but it’s extended now into the personal knowledge management space of, um, you know, our brains only hold so much and we all have a very long life and many, many interests.

And it’s really like the world is so overwhelming these days that how can we stay on top of everything? It’s just impossible to do alone. Like, let’s lean onto technology. So building a second brain is, it can be, you know, as simple as an external task manager or as complex as like a whole vault that holds all your research notes, thoughts.

Task management, everything. And that, I just find that so interesting. I love tech

Adina: Please talk to me about this. Anytime.

Annie: Yeah, I will. I will. ’cause I’m like, I love this. I’m not like a tech genius or anything, but I love learning how to use things like AI and all different technology to help me, enable me to do my job, which is advocacy and communicating all of these really complex systems and connections to people who sometimes are only in one little narrow lane.

Yeah. And are missing these really complex connections that could make all of our lives easier.

A lot of neurodivergent adults will come to me and say, Like they’re, they’ve just gotten on to NDIS, but they have no idea what to ask for for help even though they cannot function or are struggling so hard.

And that’s another area that like so much is focused on kids. And we kind of forget that neurodivergent adults do need help too.

But thank you for having me. I always love talking to you. Let’s do this again. Anytime. Definitely. You have to come on Princess and the Pea of course.

Adina: Yeah. And next time we’ll go deep into like AI and Yes. Databases.

Annie: Me too. I love talking to you. Um, yeah, no, please do. Come on Princess and the Pea

Adina: Annie, thank you so, so much. It’s been an utter pleasure sharing this space with you. And I can just guarantee I’m going to have you back one day.

Annie: I’ll come back anytime.

Adina: I will pop all the links that we’ve talked about in the show notes so you can get in touch with Annie and find her if you haven’t already.

Annie: Thank you, Adina. This has been so much fun and I love all your shows. As you know, I spam my, my people with them as well. Like go listen, see you, but thank you. Bye.

Adina: Thank you so much for sharing this audio space and time with me, and thank you for being open to learning and unlearning and truly listening to the neurodivergent experience and perspective. If you found this episode helpful, please share it with a friend and join me on Instagram and Facebook. I’m @play.learn.chat

that’s Play.Learn.Chat, you’ll find all the links that we discussed in the show notes. Have a spectacular day.

 

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