In this episode, Lou Woods is joined by Dr Carly Jones MBE for an insightful conversation about ADHD, autism, AuDHD and what it really means to navigate a world that wasn't designed with neurodivergent minds in mind.

Drawing on her lived experience and professional work, Dr Carly shares her own journey with ADHD and autism, explores why so many people discover they're autistic after receiving an ADHD diagnosis, and discusses the importance of self-advocacy, psychological safety and creating environments where neurodivergent people can thrive.

Together they explore the overlap between ADHD and autism, masking, autistic shutdown, workplace adjustments, safeguarding, and why greater understanding of neurodivergence is essential across society, including within the criminal justice system.

Whether you're newly diagnosed with ADHD or autism, questioning whether you might be AuDHD, supporting someone who is neurodivergent, or simply wanting to better understand neurodivergence, this episode is packed with practical insights, honest conversations and thoughtful discussions to help you feel more informed, understood and empowered.

In this episode we discuss:

• Dr Carly's journey with ADHD and autism

• Understanding AuDHD and the overlap between ADHD and autism

• Why many people recognise autism after an ADHD diagnosis

• Masking, autistic shutdown and burnout

• Self-advocacy and safeguarding

• Workplace adjustments for neurodivergent people

• Neurodivergence in police custody and the criminal justice system

• Building safer, more inclusive environments

• How to become a better advocate and ally

• Living authentically after diagnosis

Connect with Dr Carly Jones MBE

Website: https://drcarlyjonesmbe.uk

Instagram: https://www.instagram.com/drcarlyjonesmbe/

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Hello and welcome to the ADHD Interrupted podcast where we help you really understand what's going on in that neurosparkly brain with practical tools, expert insights and plenty of those.

Oh, now it all makes sense.

Moments that we all definitely need on this journey.

Today's guest is trailblazing British autism Advocate and author Dr. Carly Jones MBE.

His work and influence has stretched from United Nations, Parliament, Ministry of Justice, Aviation and so much further.

Please join us for this conversation as we delve into her journey with audhd.

We explore self advocacy, shutdown, social imagination, sleep, the overlap between ADHD and autism, and so much more.

Enjoy the conversation.

Quick ADHD hack before we start.

If you're always forgetting to take your vitamins, make them so delicious that the only problem is perhaps taking too many.

Huge thank you to our sponsors proven vitamins for believing in our mission and helping us Support support you.

Dr. Carly Jones MBE, autism advocate, author, speaker, safeguarding specialist and so much more.

Thank you so much for coming onto the ADHD Interrupted podcast.

Thank you so much for having me.

And it's so nice to be able to do this from home as well.

I'm sat here with my comfy blanket.

So if someone was to come across you today, how would you explain your work and mission?

The mission is to make sure that every autistic woman and girl has the ability to have a safe, happy and that equity in life, be that in employment, be that in education, be that in any aspect of life really, particularly kind of travel and safeguarding around that and to make sure that whenever there's a new policy written or a new project happens, that we're always kind of looking to make sure that yes, things should be universal, but making sure that we're really thinking about some of the most vulnerable women in the world within that so no one gets left behind.

I love that your focus is on women as well, because I know like in the ADHD world quite women are heavily late diagnosed and their symptoms don't show until a lot later on in autism.

How does that look?

It used to be believed historically and by historically I mean kind of 15, 20 years ago, that men could be autistic without an additional learning disability.

But it was so rare for a woman to get an autism diagnosis unless she has an additional learning disability of some type.

Back then in my 20s when I started out at advocacy, I used to go this is clinical misogyny.

And I was quite cocky then.

And I'm a bit, I like to think, think I'm a bit more calm now.

In my mid-40s, so some people would still agree with that, but I think it's always been a real misunderstanding.

So those diagnostic tools were kind of designed to capture men and boys as opposed to women and girls, which we see lots of different neurodivergent conditions and lots of different conditions generally, don't we?

There was this thing that I saw online.

I think they were saying even seat belts were designed for men, not for women.

And.

And all sorts of things.

Yeah.

I haven't read the whole book yet and I can't remember the name of the book.

I should have done my research beforehand.

But there's a whole book about it, about everything that's been designed.

Just interesting.

Yeah, like really important things.

You're like, oh, they're designed for men.

And I do.

I get a bit of stick sometimes online and, and rightly so, actually, you know, saying, well, you know, why have you only spoken about women and girls?

And in my book Safeguards and Autistic Girls, I did write in there, why.

And it wasn't out of lack of care for.

For males.

Absolutely not.

It was more about there are going to be autistic men about a much later diagnosis who have encountered abuse, who have had a similar trajectory and it's kind of their story to tell.

And I didn't want to be stepping on someone's toes and I don't think as an autistic woman I really liked it.

If there was a male autistic advocate then writing a book about women and girls, you know, it'd be helpful for sure that.

But I kind of just felt like I don't want to step on someone's toes.

That's somebody else's story and somebody else's advocacy work to talk about.

But I do get stick about talking about women and girls.

But hey ho, you can't win, can you?

And I think it's.

I think we need people who just focus on women sometimes because it is different, especially with hormones and things like that.

We have so many different aspects that affect it.

Can you share a bit about your journey and what neurodiversity and autism advocacy means to you personally?

What's the phrase?

Eat, sleep, brave, repeat autism there?

Yeah, definitely.

I thought back in, when I first started out, I think I was about 20, 26 ish and I thought, oh yeah, this isn't very good.

There isn't hardly an awareness about autistic women and girls.

Kids were tiny.

I'll do this for a year and it will be sorted.

And of course now I'M here in my mid-40s going, there's so much more to do because the more people understand, the more projects need help and support and.

And it's just kind of snowballed from there.

But it means absolutely, absolutely everything to me.

And I'm so interested as well, mainly because, as you know, as when we met, a lot of people going, you sure you haven't got ADHD as well as autism?

I'm very, very interested in all the brilliant advocacy that women with ADHD are doing around that kind of safeguarding, around that dual diagnosis.

It's funny you say that, because I thought so.

Yesterday I asked our community if they had any questions for you, and so many of them who do have ADHD were asking about the dual diagnosis, like they.

They've been diagnosed with ADHD and now they're thinking that maybe they have autism as well.

You can't get diagnosed both at the same time, is that right?

Some private practices do.

The nhs, obviously, is all done kind of regionally, so some regions will do what they call a dual pathway.

You won't just go on a pathway for autism or pathway this way for adhd.

They'll kind of try and do it.

Not the actual clinic clinical diagnostic test, if you like, but the actual care support and, well, this is where this person's heading.

It's really interesting as well, because I hear that quite a lot that somebody will get the ADHD diagnosis and then perhaps once they've got either they choose to have medication for it or they've got some kind of really good strategies in place to help with their adhd, they then go, oh, my gosh, I'm autistic because the ADHD is screaming and the autism, like, hey, what about me?

And perhaps for me it's been the other way around.

I don't know, perhaps my autism's a lot louder than my adhd.

But I tell you what, going back to hormones, now I'm in perimenopause, it's completely changed, obviously.

Still incredibly autistic.

I'm always going to be autistic, but it's like the ADHD is getting louder and louder, like this kind of train approaching.

And I'm sure that's to do with that kind of drop off.

Yeah, when it drops, it's a nightmare, I think, for every woman, especially just even just in pms.

When your PMS starts with the pmdd, the estrogen drops and it's just.

I mean, I don't think my medication even works during that time because it's like, really?

Yeah, it's so loud.

Like the pmdd.

I have pmdd.

Those symptoms just override it all.

But what I'm interested in as well is the, you know, so you have an overlap, don't you, with ADHD and autism?

And there's a big, you know, sensory issues.

For example, rejection sensitivity disorder.

That comes under both.

So say if I was an ADHD girl and I have the overlap symptoms of autism, does that necessarily mean that maybe I have autism as well?

Or is that just.

There's kind of like a.

A buffer space perhaps, maybe, where maybe I do have same symptoms, but they're just overlapping.

They're not, you know, carried into autism, if that makes sense.

I think social imagination is something.

Or difficulties or differences with social imagination is something which is more heavily pinned down as part of the diagnostic criteria as being autistic rather than adhd.

But who knows?

I could.

I could be wrong.

Our thoughts on that might change as things go along.

In a nutshell, trying to describe social imagination, it's always quite tricky for me to describe because that's the one thing that I really struggle with most is in a social context, if I say this, someone else says that this happens, that happens, what could happen next.

So obviously we're not all mind readers.

Neurotypical people aren't generally mind readers anyway.

But it's more of a case of knowing, oh, gosh, I didn't foresee the social consequence of that, which might make a sense.

Sounds quite like letting me take a lot of risks.

But actually, I think that's where the love of rules and the, you know, sense of justice and fairness overrides that a lot of the time.

For me and for many autistic people, I know that social imagination hurdle has just made us incredibly vulnerable socially.

But at work, it's completely different.

At work I'm like, okay, this happens.

That's so very, very systematic, very strategic.

This happens.

That happens.

That's what could happen next.

So it makes me good at risk management.

And maybe that's my anxiety as well, you know, so in.

In a.

In my personal life, chaos in my professional life because I'm always thinking, but this could happen.

But that could happen.

Because I. I seen a post the other day.

I don't want to misquote it, but it was something like when you have aud, you have.

It's like the devil and the angel on your shoulder.

Not that there's anything wrong with having adhd, but you have that person go, oh, just go on, do it, do it.

Who cares?

Like, go for it.

And then the, the, the audio, HD or, sorry, the autism said, no, no, no, there's a risk factor there.

You know, don't do it, think it through.

And they kind of explains a lot.

Yeah, I think I've just mostly had the devil on my shoulder all my life with a bit of angel.

But, yeah, I find it really interesting how they, how they can interact together and actually be a bit of a asset.

Do you.

Would you agree?

It's a good asset?

And I think also with that mix, which I'm coming to terms with, the fact that there's definitely a mix for me now is that, okay, I want to do this thing and it sounds really good and we're just going to go ahead and do it.

But then before that, I think, well, I better step till 3am and write a whole list of, like, pros and cons.

So I think I've always learned now to kind of go, okay, give it 24 hours, give 48 hours, write down everything, like, why it's good, why it wouldn't be good, what are the risks?

And I'm kind of having to learn as well that just because something feels like a good idea, it might not actually in reality be a good idea.

And just be very mindful of that.

And I think if you are undiagnosed with ADHD and you don't know that you've got adhd, it might be the case of, well, I'm, I'm thinking this, I'm feeling this, therefore it must be the right thing to do.

But when you know, you can kind of go, okay, I'm just going to double check.

This isn't me, like, seeking this massive dopamine hit right now.

I mean, and, you know, some people don't want to pursue the diagnosis, but they just want to look into it more.

And either way, it's, for me, finding out more about it has changed my life so much.

So much.

Because, like, you say, like, you can catch yourself, you're kind of like, aware of those behaviors and you can blow.

Okay, hold on.

Is this, is this my adhd?

And.

Yeah, and then of course, it can help you get the right support.

I know people give labels a bit of a bad name at the moment.

There's a lot of that.

Oh, God.

Everyone wants a label, but labels are powerful.

Like, labels can help you get the right support, find your community.

Yeah.

Research the right things.

Like, labels are incredibly, incredibly important.

So life saving.

I think a diagnosis can absolutely be life saving.

And I think we kind of we underestimate that a lot and we see in the press, you know, people are getting a diagnosis because they want benefits or people are getting a diagnosis because you know, their workshop, all this kind of stuff and it's just absolute rubbish.

People are, are seeking a diagnosis because they've got to a point in their life where this is becoming a daily battle for them be that internal, external however and it's something they need to be able to, to thrive and the trajectory to go upwards and, and for many people they're, you know, they're a crisis point by the time they're asking for a diagnosis and it just shouldn't be that way.

It's so sad.

That's why, I mean I try and keep my content really positive but the 1 aggie, 1 aggie post that I did was around that narrat over diagnosed and I'm very for like the diagnostic process being, you know, progressed and made better and things like that.

It was just those headlines I couldn't stand and that stigma because there's an existing stigma anyway so that was kind of.

Yeah feeding into it and you know, people just kind of.

Oh God, you've as well.

And if people who had just met me two years ago, you know, they wouldn't understand the difficulties that I had through my teens and twenties in school with alcoholism, with drugs, you know, and suicide and things like that.

Yeah.

And it's so important for people to get the answers they need.

You know, it's invisible and people need to just.

Unless you're an expert, I don't think you should be deterring people.

I think sometimes as well when people can be a bit like that about things.

Well, first of all it's coming from a headline.

It's going to be some sort of clickbait, isn't it?

And then somebody might look at you and go, oh my gosh, you know, you're, you're really successful woman and you're doing really well and there's no way you could have excellent xyz.

We're like, well actually come and see me before I got my diagnosis, come and revisit me before I got the support or the strategies in place.

And then you'd be going wow, what can I do to help?

So it's kind of a bit cruel, isn't it?

Yeah, yeah.

And it's like, you know, people like yourself who are so like high achieving and they've done all these things people don't understand, maybe they person has to try a lot harder, you know that you don't see what's behind the scenes, do you?

I used to do some training for parents some years ago and we were talking a lot about kind of masking.

They say, well, my child's fine at school, but then when they come home.

So now it looks like it's a parental issue.

What am I doing wrong?

When we've been sent on parenting courses and all this kind of stuff.

And I would always say, well, they're all, they're only seeing the snapshot.

As a parent or as an individual yourself, you've done all this prep work to be able to give the world this snapshot of your life and after that you've got this recovery time.

So there's lots of sacrifices.

You know, some people go out to work and they go, I'm going to meet up with a friend and have dinner after work, then we've got to go to cinema then.

But actually you just come home and you're like just bedrotting, doom scrolling or just having or for me like five hour baths because that's how I recover.

So you sacrifice a lot of your social life in order to give the world that snapshot.

But that's all they're seeing.

They're not seeing the amount of preparation and the amount of recovery it takes to do or to look like you're doing what everyone else does.

I just have to really focus on eye contact.

Oh, how, how does RSD show up for people with autism?

I think so mainly I don't want to speak for all autistic people.

Mainly in autistic people or either people that have meltdowns or people that have shutdowns or what clinicians might call passive presentation or external presentation.

So I don't generally melt down unless someone's really wound me up.

I'm very much a shutdown person.

It's normally around lights or stress.

So for me that looks like I'll be in a room with the lights off.

Like the worst migraine you've ever had times a thousand with your head in a vice.

I feel like my eyes have got rods in them.

I find it very, very painful and I'm completely non verbal.

I can't talk and I want to talk and I can't.

It got so bad one time that my shutdown lasted for seven hours and my mum called the ambulance and they said, oh, we think she's had a stroke and I hadn't and you know, they had to explain, oh, you know, she's, she's autistic.

I've often wondered if there's different expressions of RSD as well.

So it could be more external, more internal.

So I do really struggle with that rejection part.

But then I'll kind of try and stabilize that with two really odd methods.

So the first method is, let's say I'm applying for a job and I really, really want this job.

I will then go, okay, I applied for that job.

I can't just sit at home and think about when I'm going to hear if I've been invited to an interview for that job or not going to do.

I'm going to apply to 10 more jobs.

So then if I don't get an interview for that one, I might get an interview for another one, which will make me feel better about that rejection.

Or I mean there have been times been rejected for all of them.

That's just terrible.

But, you know, but, and, and I try and do it a bit like that because I am then also not waiting for that one email.

Oh, I'm waiting for 10 emails.

So it kind of lessens it.

Or the worst thing which I try not to do anymore is I'll self sabotage it.

One time the question was, so there's two of you left, there's someone out in the waiting room.

Why are we picking you and not the person in the waiting room that also wants this job?

And I said, well, I just care about this job so much, far more than what I want.

If that person's going to do this really important job better than pick, pick them.

And they did.

So there's that.

But with that internal type, it's turned me into somebody because I'm acutely aware of how rejection feels and how painful it can be.

When I'm interviewing people for jobs, I'll always go, okay, well there might not be this bit on the essential criteria, but look at all this voluntary work they've done that shows their commitment.

They can learn that I'm always advocating for people because I know how horrible it feels to get a rejection.

And so for me, I wonder if RSD for me's gone internal.

I think, I think ADHD is a known being high empaths.

Everyone I know is an ADHD is really high empath.

Do you think that's the same for autism as well?

Yeah, so there's, there was, I mean there's even been books.

I'm not saying that all autistic people have hyperempathy, but for the, for the majority of autistic people, I know they've definitely got hyper empathy and, but we always Read about autism means you have no empathy and all of this kind of stuff.

And that's, that's really sad and I think it's the way things are perceived as well.

So when the kids were small and I'd be in the supermarkets and if I could hear a baby crying, it felt as if it was kind of like my own child crying and I wanted to go and help.

And obviously you can't do that because you've got to look a bit odd if you go up to every baby that's crying.

And I used to like actually really worry and the whole way home I'd be thinking, oh, I hope everything's all right for them at home.

And it would actually like keep me up at night and things like this.

If you think of it in that way and then you imagine you've got an autistic teen son and every time he walks into the room there's a baby, he walks up and goes, oh no thanks.

And shuts himself in a, in this bedroom.

You've got to go, well, there's no empathy actually.

What if it's hyperempathy?

And you're thinking, if that baby cries, I'm going to really worry about it for weeks.

It's a myth, isn't it, that autism, autistic people are less emotional.

Is that just them not being able to show it?

Whereas ADHD is a more impulsive to show that kind of emotion.

I find it really, really hard to cry.

And I think for, for a lot of, for autistic people we can struggle something called alexithymia.

So processing and kind of displaying our emotions timely.

So for me everything takes a year and I can kind of go through those stages of processing something that's, that's been very, very sad or really impactful emotionally.

But it takes me about a year to go, oh yeah, I can feel it, really feel it and I can display it and I can talk about it because until then I'm probably going to be non verbal, not talk about it, not come across in the right way.

When asked to talk about it.

If I, if I am verbal at that point and just kind of bury it down.

And it takes me a long time to process things.

So that's with good and bad things.

So I got in the car with one of my colleagues to go to work and they said, how was your evening?

I said, a wolf or my friend died.

And she went, why are you coming into work?

I said, can I just have this day next year off?

Because that's when I'm I'm gonna, you know, it's gonna hit me like a truck.

And, and it did.

And with the girls when they were born, I didn't do that kind of cry, you know, that kind of happy cry that mums do on the TV when they've just given birth.

I was just overwhelmed with gratitude, shock, relief, all of those sort of things.

Their first birthday, I'd cry that happy cry.

So it just takes me a year.

So I think that could also be misunderstood.

I've always felt that I'm kind of either a chapter behind or a chapter in front in life, but never on the same page.

The non verbal shutdown you speak of, what is it you experience during that time?

Is it very physical?

Is it?

I've never spoke to anyone who's actually experienced that before.

Yeah, really painful.

So before I got my autism diagnosis as an adult, I was constantly at the doctors at A E because they were like, you know, she has really, really severe migraines and put on lots of different medications and all of those sort of things and nothing really works.

I used to have wafers that to put under my tongue and all sorts of things.

And it's because I wasn't, I didn't know that it was part of my shutdown and, and the feeling for me, it's really scary.

It.

It kind of feels like I can't remember anyone's name as well when it happens, not even my children.

So I think I might be able to say something.

It's not that my vocal cords aren't working, it's.

I can't put the sounds, I can't put kind of like the phonics together in my head and then I just can't remember.

It's like all language disappears.

And in those moments before I knew I was autistic, it was really scary.

But now that I know that I'm autistic and know what this is all about, when that happens to me, everyone around me knows that that can happen.

I try to think about probably going back to hyper.

Empathy is, I think in goodness me.

There are autistic people that feel this every day, all day.

What would be your advice for people who are listening who have experienced it or are experiencing it regularly now, or who are parents of kids who experience that.

You know what, it's easier as an adult to manage because as a child.

So the way I manage it is kind of lifesty change.

So I will do lots of work.

Busy, busy here, there and everywhere.

And then I'll come to a point where I'm like, actually I'm feeling quite tired because that alexithymia thing, sometimes I don't even know if I'm tired.

And autistic people don't produce as much melatonin as well, the natural sleep hormones.

So we don't naturally get tired as quickly as non autistic people.

I'm not sure if that's the same for adhd.

I don't know.

Is it the same?

It's about three hour delay.

I used to always worry about being lazy and I also, I worry about that now mainly because when I was 14, having these shutdowns and my parents took me to a psychiatrist, they diagnosed me as lazy because I wanted to lay in bed to get rid of it.

So, so maybe it's because of that that I'm always, I can't be lazy.

I've got to be doing this, got to be doing that on top of being neurodivergent.

But any opportunity I've got to sit down and be comfy, I'm like, no, I'm going to do it because I, I always just think anything which is going to make me feel chilled, I'm going to jump at the opportunity.

And it's not being lazy at my five hour bath.

It's, it's my way of like keeping the wolf from the door and that will be in the shutdown.

So I just always go, no, if I could put my feet up, put my feet up.

If I can wear my comfy trousers, then I'm going to do that, you know, and just being really kind to myself because there are times at work but you've got to be seated and booted and you've got to be your best self and all of these kind of things professionally.

So I save it for that and I save it for days out with my girls or events with my girls.

I'm like, right, I'm only going to do online this week because you know, somebody's birthday coming up and I want to be my best self for them.

But it's harder for kids because of course they don't have that luxury.

School's certain time, there's certain rules, a certain uniform, so it's easier for us.

Adults, I think a really quick shout out to our sponsor, Proven Vitamins.

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Now back to the episode.

You said something the last time I met you about kids being screened early on in schools and I thought it was almost like a no brainer when you said it, like, why isn't this happening, especially in today's world when it's so hard to get a diagnosis and the waiting lists are.

I mean, it's my understanding, right, that if you get screened, it's not necessarily a diagnosis, but it's a kind of indication.

And then the schools then could work with that and give them a bit of support while they're waiting for their formal diagnosis.

Yeah, I think until we've got every single classroom in the world, neuro affirmative, neuro inclusive, I think it's really important that there is some form of identification.

So not necessarily full go on diagnosis, just identification about that.

I think that's important and I think there's also this kind of stigma that, oh, you have to have a diagnosis to get support in school.

You don't.

It's all, it's all the Equality Acts needs led as opposed to diagnosis led.

In the NHS there's something, we have something called SNOMED codes, which I always try, remember as snowman.

For some reason, every time I hear a word, sometimes I get a picture in my head of the word.

For me it's a snowman.

So if you get diagnosed with ADHD or autistic or diabetes, anything, there are these codes that go on your medical notes and there actually is one for being on the pathway to a diagnosis which you can go on there as well.

So if we followed that kind of thinking and use that in education to say there isn't a diagnosis in place yet, however, this young person's been identified as possibly being, and we've got to work to that until proven otherwise.

So going back to the needs ledge, the Equality act, does that apply to the workplace as well?

Yeah, absolutely.

And I think it's really important that people remember that your diagnostic report has got some really sensitive personal information about you and should only really be shared between you and the psychiatrist, psychologist, clinician that diagnosed you.

Because my brilliant, the brilliant doctor that diagnosed me said to me, carly, I don't want you to ever show this to anybody.

And I said, oh, no, well, I'm not ashamed.

And la, la, la.

And I was, you know, I'd waited ages to, to get my diagnosis, to get my answers.

And she said no, she said it's, it would make you really vulnerable because then somebody would have the blueprint of what distresses you?

Any blind spots that keep you safe?

So it's really important, actually, that that diagnostic report is between you and.

And your medical professional, not something that, you know, you.

Okay, have a look at this.

Now, can I please get some support here, please?

Obviously, there are parts of it that you can say, okay, well, here's the summary and the date and where you got diagnosed, if pushed.

But that would be a top tip to anybody about their actual diagnostic reports.

So do you have to be on a waiting list to speak to your boss about this and get flexible adjustments?

No, not at all.

I've supported a lot of people, a lot of professionals, through my British autism advocacy business.

Because what I found time and time again, there will be lots of people that decide, actually, if I've got the right strategies in place.

I don't.

I do not want an official diagnosis, which is everyone's choice, depending on what they do professionally.

Yeah.

So your book, Safeguarding Autistic Girls, has been gifted to police and crime commissioners.

How has that initiative impacted systemic change?

I think I was at Parliament for an event and I took my book with me because I was gifting it to a few people and I. I took a picture of it and then I popped it on LinkedIn and someone said underneath, I've read your book.

I believe every single police force in the UK should have your book.

And I said, oh, if only I could afford to do that.

You know, don't get free copies or anything.

I'd have to have to buy them all.

And then an incredible woman who.

A woman who runs a legal company inboxed me.

We'd never met before.

And she said, how much would it cost?

I'll sponsor you to do it.

And I was like, goodness, really?

So I then figured out how many police stations there were in Scotland, England, Northern Ireland and Wales.

And I was like, this is going to be thousands.

And she's brilliant.

And she.

It's the same day, she just put the money into my advocacy account.

A lot of the police and crime commissioners or their secretaries would write back and say, you know, thank you for the book.

And I never really.

I didn't chase it up to see if it had made an impact.

And it was just.

It was through my work at Ministry of Justice, I bumped into a police and crime commissioner and he was like, oh, my goodness.

He said, your book, he said, it's completely changed how we handle autistic people in police custody.

I've got another one of your books here, my Autism Journal.

And even just with adhd.

I think it's so accessible and so good.

I love that you've put little quotes in there as well.

Yeah, I think the idea behind it was.

So when we wrote the safeguarding book, I said, Spoke to the publishers and I said, actually, some of those strategies that would be handy if that was a workbook.

And I said, oh, well, let's make a workbook.

One of the biggest hurdles I have would be, you know, how do you feel about that?

Can you ask me in a year?

Because I've got alexithymia and the way that I can monitor my own wellbeing is normally based on diet.

So if I'm sad, I don't eat.

If I.

If I'm anxious, I overeat.

So my weight fluctuates quite a lot.

So you can always tell my emotions by my size.

So that's one thing that I found quite interesting.

So you can kind of write in there about the sort of things that you might be enjoying, like what was your best favorite meal of the day?

And the kind of.

The.

The best thing and the worst thing.

Kind of strikes up a conversation as well, doesn't it?

And it's quite nice to.

Quite nice to share and, you know, and just kind of, yeah, do it every day.

I tend to communicate or process feelings through music.

What are some of the most common misconceptions about autism in girls that still exist today?

Sometimes is that we're not going to be good parents.

That one really upsets me and I think actually that's quite contextual as well, isn't it?

I've never seen more love and care between an autistic mum and particularly if she's got neurodivergent children as well.

Because, yeah, if you were to compare, I guess.

Oh, well, you know, they don't want to go to the software play area because it's too noisy, or they don't want to do this or they don't do that.

Well, actually, guess what?

Nor does their child.

Their child wants to be at home in the garden doing nice, quiet sensory stuff as opposed to that.

So I think it's often because it might look different to where everyone else is doing on a Saturday morning or whatever, then it's wrong.

But it's not.

And this is why you get a lot of people that don't get diagnosed till later, because their parents live in a really autistic, friendly way anyway, because they're autistic themselves.

Or NeuroDivergent ADHD or DHD, a very big one for Me would be that if you have an autistic girl and she is getting all the good grades at school, college, uni, and everyone's like, wow, she must be doing so well, and there's no way that she could be vulnerable because she's so academically bright and not seeing those vulnerabilities.

That one I often find really, really tricky to explain to people that your academic intelligence in no way correlates to how you can keep yourself so short.

Socially safe autistic girls are really, really overrepresented in eating disorder clinics and residential settings for people with eating disorders.

The reason for that can be very, very different for autistic people in general, not just girls.

You know, it's more about control, it's more about anxiety.

It's not, oh, I want to look like that really pretty girl on Instagram, it's for other reasons.

And that's so important because a lot of the time, kind of the treatment is, well, we're going to have to watch them eat and we're going to have to weigh them every day.

I'm going to have to do this, I'm going to have to do that.

And they're just stripping them of more control.

So it gets worse rather than better.

Just ask your question on the.

On the eating front, because I know somebody who struggles with sensory issues, involves her eating the textures, things like that, and God love her, she goes to the gym, she tries to lead a healthy life, but she's finding that her energy levels are still so low, despite her trying all these things, because she's not getting the right nutrients, which must be incredibly hard.

I said.

I asked her if she tried, like, shakes, things like this, even supplements, you.

Know, if you would have five digestive biscuits in a row, you're going to eat one and they're going to be the same shape, it's going to feel the same when you put it in your mouth, it's going to feel the same when you swallow, it's going to taste the same.

If they were five tomatoes, one might be sweet, one might be sour, one might be hard, one might be gooey, one might be like a little bit on the turn.

So it's different.

So it's that predictability.

So a lot of the time it can look like, well, you know, if you didn't just eat biscuits or crisps.

But actually it's like, well, I can't deal with the uncertainty of how that's going to taste or the texture of other foods.

So it could look like somebody's Unhealthy, but actually they're not.

It's completely because of that sensory issue.

I don't know what it is.

Personally, I find little spoons really helpful if I'm struggling with my eating.

Because you feel like you're doing really well because you have to use it more.

And if you're not doing so well that day, you need to have a little bit to try it.

If you can get lots of little ramekins instead of everything being on one plate.

So perhaps your peas in one little ramekin or, you know, your.

Your chips or whatever in another, and those sort of things.

And I find as well, a task always feels really impossible until you've done it.

So if you are struggling with eating, be that the texture of what you're eating or eating in general, if you get a big plate and it's covered in food, it can be like, there's no way I can finish that, so I can't start.

I'd much rather have, like, tiny, tiny amount of food on my plate, and then I can go back and get some more if I want to.

And then I find that I eat just as much as would have been on the plate anyway.

It's just the fact that it was like, oh, it's that kind of eat everything straight away.

I'm like, oh, God, how am I supposed to eat that?

How would you describe the social struggles with autism?

Because I know that's something that people struggle with a lot.

I feel like I have to observe a lot when I first meet new people.

Yeah.

And it's like when you were talking about the food thing, it just made me think, oh, God, I bet that's such another social barrier as well, having to kind of think, oh, God, will I look weird if I'm not eating my food till this certain time?

Or.

Or just dreading the other sensory issues about it.

I have noise sensitivity to things, and that could be, like, people chewing loud.

Oh, no, can't do chewing.

I still, to this day, I feel like when I say it out loud, I look like a bit of a no bed.

Because that's how people perceive it.

Like, if I say it up to someone, I'm so sorry, but can you please, you know, stop?

They'll be like, oh, God, what's wrong with that?

Even, like, the noise of the knife and fork on the plate.

Like, there's a lot of things that are included in that sort of eating environment that I really struggle with, and that can really ruin an experience for me, like a family meal or Something.

It's just that kind of fight or flight.

It's like you need to escape and like you're about to first.

I've, I've got off a train before, before my start because people were sniffing so much I forgot my headphones and it was just constant sniff it sniffing.

And I was, I can't bear it.

I had to get off the train.

It's very similar to a phobia and like being scared of spiders, for example.

I mean that's just an irrational emotional response in the brain that's triggered by seeing something.

You know, misophonia.

All this sensory sensitivity is the same except the sense is hearing and the emotional response is more like pure rage.

I always have my headphones wherever I go, just in case.

You're kind of in battle with your mind, aren't you?

Because like you don't want to get up and move and be rude.

You don't want to ask them at the same time.

It's like unbearable.

But yeah, I'm so glad this, this is more spoken about as well because for so long I just thought I was crazy.

No, you are not.

Not in the slightest.

So how can listeners support, support systematic change, not just awareness in areas like healthcare, justice and employment for autistic individuals?

You know, in lots of places that I work it will be within a team that help out with disabilities or a team that helps out people with learning disabilities or kind of a team because it's to do with autism.

The kind of mode of practice is, okay, we will try as this team to support lots of different departments.

It's kind of doing it the other way around.

So there aren't teams that have to go.

Right, we're going to have to get in touch with these people and ask them to do this.

It's more the other case of going in this role, which has nothing to do with it.

We are going to come across these people as employees or as customers or patients and just kind of training is really important.

If you can get somebody, if you.

Have.

A colleague who has ADHD or is autistic that is kind of like, oh, this could be helpful, that could help.

Obviously you don't put any pressure on them in their, in their day time, but they might want to go, okay, well let's set up like an employee support group, a peer support within that company or within that department so other neurodivergent people can find each other.

And I think that's really, that's really, really helpful.

I love that because.

I love that because it makes you feel less alone for a start.

Yeah.

And then it's just like evidence before you know, you have to go through your own story.

It's just evidence that they're doing something to support it and they're accepting.

I speak to a lot of people through my Instagram who they've just had a diagnosis and they're quite scared to tell their boss and they don't do.

And it's a huge stepping stone on that journey.

Yeah.

And people are worried they're not going to get the promotion.

Yes.

They're going to go well with it.

They're worried it's going to stunt their growth within their career.

So yeah, having them kind of like existing groups that's, it's so good because it like it just gives us evidence there's something there.

In fact, someone from the community had a question similar to this.

So Meg said about communication styles.

She works for a woman's charity supporting unemployed women and she wonders what is helpful to know that could make the process more comfortable for those with autism or dhd.

Okay, so one quick win would be probably not to do the telephone call.

If I know that I have to make a call, I can kind of go, okay, this is when I'm going to make the call.

I know who I'm going to calling.

I don't like it if I get a phone call which hasn't kind of been pre planned.

That kind of stuff is just makes you feel really anxious.

So first of all, for that first connection to be via email or text if that's, if that's appropriate for that particular resource and then for there to be context, context in that email.

So what, what you're always going to have to.

And this really helps people that aren't autistic too.

Just really busy.

Who, what, how, where, when, why with those you have got.

Okay, this is who I am.

Oh, hi, I'm Debbie.

What?

This is what we do.

This is how it's going to happen, this is why we're going to do it.

This is where and XYZ and you go through it and then if there's anything that you need from them.

I always try in emails if I can.

If there's an action for somebody else to do, I'll put their name in bold so their eyes immediately go to oh, okay.

So that's the action for me and always to have like next steps afterwards.

And that's just so easy.

And you think, oh well that was easy to do.

Yeah, easy to read.

Therefore the service I completely Understand the service.

I feel more comfortable.

And the job interviews, if you can try and get questions in advance.

Someone said to me the day that they've changed their email footer now to you are dealing with a neurodivergent person.

Please allow four working days for a response.

And it's been on my mind for a while.

I really want to change mine.

You know, I'm self employed.

I struggle to organize myself.

I have lots going on and I'm neurodivergent and you know, I haven't brought myself to do it because it's that fear.

Oh, I don't know, like what do you think on that?

I'm sure it'd be really well received and I think it's just.

And it spreads awareness at the same time, right.

Particularly say you're in a big company and there's lots of, lots of different people and the email pings about it might be like, oh gosh.

Actually that's a really good thing you should be thinking about.

That also kind of covers your backside if you do accidentally swear at someone inadvertently because you're also correct that you.

Talk about oversharing is caring.

Can you unpack that a little bit for us as to what that means?

I think what I mean by that, as long as you're oversharing in a kind way, I think it can put people at ease.

You know, I'm a try to overshare about myself.

I don't want to embarrass anybody else but I think it's, it's, it's a good, a good thing to do.

I'm constantly oversharing.

I think it's also a lovely thing to see in, in somebody.

You know, I've met fellow oversharers.

I'm just like, this person's obviously a really honest person because if you're talking at the speed of light, you do not have the luxury of going, right, I need to remember what I said when I said it.

You can't.

You know, you'd be the crappiest liar, wouldn't you?

Because if your brain in mouth is going constantly and you just got to be.

I love seeing people overshare.

You were the first British autistic woman to speak at the United Nations.

What did that experience mean to you?

It's interesting, isn't it?

Because I'm sure there have been many other autistic women that have gone to the United Nations.

Perhaps they just didn't know they were autistic or the reason they were going there wasn't about Autism.

But yeah, and I didn't know until afterwards about that, which I said, well, I was trying to minimise.

Always try and minimize.

I know, yeah.

Wear that crown with pride.

Yeah, it meant, it meant a lot.

And obviously it took me about a year to process and then I went back.

I went back.

I was a bit rubbish the first time, to be honest.

I just got so overwhelmed.

I did start crying and the chair gave me a bottle of water and had just been diagnosed maybe six months beforehand.

So it was all really, really overwhelming.

So I did go back and did a better job of it, but it meant an awful lot to other autistic women and girls as well, because it was just trying to air things that we did know particularly unsafe in our garden that we'd known be going on for, well, the history of, of autistic women and being able to, to talk about that to other people.

And it is such an incredible platform where people are then going to ask.

A lot of questions.

You've got all the right.

You've got people from every country in the world in the room and then taking that back to their regions and their, their countries.

So, yeah, I don't think the magnitude of it is actually processed yet.

Looking ahead, what are you most hopeful for about the neurodiversity movement in the next five to 10 years?

Oh, I really want to see us in more employment.

That's what I'm looking forward to.

Hopefully they'll do better at making it more accessible, but also for that to be that kind of.

And I think the pandemic, one of the silver linings of a horrific time is that hybrid work is so much more widely accepted now, but for that to.

That to really be accepted across the board and just also you often see somebody going, well, actually, I've got all these degrees or I've got all this experience, or I've got all this talent, but I'm doing this job because this job actually is the one that's accessible for me and it might be way under what they're actually capable of doing.

And that I find that quite sad, I think, and not just for the neurodivergent person, but for the country as a whole.

Like, we've got really loyal, dedicated, hard working, talented, enthusiastic, risk takers, strategists, all of this artists definitely being held back and, and I think that's.

That's bad for us as people, but it's really bad for the country as well, when we haven't got people doing the jobs that they love.

And that's why I'm, that's what I'm hopeful for.

I'm hopeful for a lot more safeguarding awareness or that in that co production, that inclusion of policies, inclusion of projects or services, which I'm seeing an awful lot of happening.

So I know, I know it will happen.

It's so right.

When you say about the employment thing, it's like having a neurodivergent employee can be such a big asset.

They're given the right tools and the right support.

What's the best advice you've ever received about your neurodivergent identity?

One thing I was told, which really helps me with my self confidence, someone said to me, said, oh, you do know your brain and you probably.

And this was old statistics, there's probably more by now.

But they said only about 1% of people in the world think in the way that your brain thinks.

And I was like, oh, really?

And they were like, yeah, you know all of those things that you can't do and you kind of really beat yourself up about that.

You can't do it because lots of other people can do it.

I said that, you know all of those things that you can do and you just assume that everyone else can do it because they can do all of these other things.

Things.

I was like, yeah, well, guess what?

They can't, they can't do that.

That's your 1% brain.

So you're too busy.

You stop concentrating on the things that you can't do or you struggle at.

Just concentrate on good things that you can do because there's only 1% of people in the world that have got those abilities you've got, so stick to those.

And I was like, yes.

And I really felt like I could take on the world then.

I think I'm going to turn that into a post or something.

Dr. Carly Jones because that it's such an important reminder because we have such a negative bias towards ourselves, I think.

Yeah.

So on a more positive note then, what's one thing you think the world gets right about autism that you'd like to see more of?

I think we've done really well as a society and all of the applicants and, and all of the allies.

Being an ally is so important, isn't it?

You know, even if you're not part of that demographic, being an ally and championing someone so important that, that all autistic people are different, there's not kind of or one.

Although we might have similar diagnostic criteria through the medical model, we're all different.

We've all had different life stories, we've all had different trajectories.

We're all going through something different that's the same for all human beings.

But even with autistic people, the way that you experience their autism as, as a, as a friend, as a family member, and the way that they experience autism is going to be different for every single person.

I think pretty much everyone knows that now.

So how do we start reframing the language around autism and neurodiversity in a way that empowers instead of emits?

Do you know what?

Actually, with a lot of projects at work that I do, a lot of the time when we're talking about neurodiversity, adhd, autism, we will, as a group, before we start all of our email threads and before we start any of our meetings, we kind of come up with a bit of a code of conduct, which sounds like it's really strict rules, but it's not.

It's about, this is the type of language that we're going to use around this.

It's got to be neuroaffirmative.

So it won't be so and so suffers with adhd, so and so lives with autism.

It'll be, you know, this is how we're going to talk about it.

This is how we're going to write about it.

So then anyone externally comes in, even if they don't kind of use the language that is more used around that social model, model of disability or neuroaffirmative language, it wears off on people.

They're going, oh, actually, let's talk about it like this.

And I've heard them say it like this.

This is perhaps how we should be saying it to our patients, to our clients or whatever.

And I think that's really, really cool just from the outset, to say this is, this is the language we're going to use, because it's, it's kind of language.

And I think a really good top tip for anybody that is talking about neurodiversity, be it adhd, autism, and let's say it's an article for a newspaper.

Once you've written that article, every time you see the word autism or ADHD in your mind as you reread it, change that word to black, or change that word to gay, or change that word to a religion.

And if when you read it, it sounds really offensive, don't publish it.

You need to look at the language around that word.

I love to ask this question with adhd, like, how would you describe autism?

Would you describe it as a disorder or something else?

I think it's really layered, so I wouldn't like to speak on behalf of somebody else and how they identify or how they experience being autistic.

For me, there are parts of being autistic which I absolutely love, although I've never not been autistic and I'll never know what it's like to not be autistic.

So I'm guessing I love my memory.

Not short term.

Short term's rubbish.

That's probably the ADHD long term.

So I can remember things from, like when I was at my earliest, recognized through family, going, yep, she's got it spot on.

So my earliest memory is 18 months old.

I can remember the smells, the touch, I can remember what people said.

Like, it's a script in my head.

A bit like watching a YouTube clip in my head.

I think that's from battle to like being intelligent.

Is this memory starting to hate this term, but it's a superpower.

Yeah, I love that bit.

The word superpower is becoming like a bit icky, I think.

But at the same time, I love it.

So I go, I think there are.

There are parts which are really, really helpful.

So for me, that's something I love.

But then there are parts that are really disabling for me, whether that's getting out and about, although I do, I push myself.

But sensory issues can be really overwhelming.

Those kind of issues with the sensory stuff and then my.

My safety in a social situation I can make.

I have been throughout my life and I always will be very, very vulnerable with people I don't know or people I've trusted, which I shouldn't say have done.

That's always going to be that way for me.

So that's part I hate.

And I hate the migraine feeling of when I'm in shutdown.

I hate that.

And if I could get rid of that, I absolutely would.

But if getting rid of that means that I don't get all the other stuff, then I'll just put up with my shutdowns.

Because I like being autistic.

I love that you've said that.

I just love that because someone asked me before, like, if you could, like, just flick a switch and then you wouldn't have adhd, like, would you do it?

And I was like, no.

Thank you so much.

So nice being with you.

Oh, you can find Carly's books on.

Amazon or in Waterstones.

I think I'll link it when I post this where you can find you.

And you're on Instagram.

I think it's Dr. Carly Jones or something like that.

Thank you so much.

Thank you so, so much.

Anati.

I've adored this chart.

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