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18. Late diagnosis
121 Plays9 days ago
Our host Kerry Highcock sits down with Charlie Hamilton, a neuroinclusion specialist and coach supporting late-diagnosed neurodivergent women, to talk openly about the realities of receiving an autism diagnosis later in life.
Together, they unpack:
Why so many autistic women and girls are missed or misdiagnosed
The emotional impact of masking, burnout and years of feeling “different”
The grief — and the relief — that can come with late identification
The power of self-compassion, community and personal advocacy
What society still doesn’t understand about autistic women and girls
Whether you’re late-diagnosed yourself, questioning your own journey, supporting someone you love, or working within education or health services — this honest, empowering conversation will leave you feeling seen, validated and motivated to help drive change.
This Is Autism is the official podcast from the North East Autism Society, sharing real voices and lived experiences to help us all understand autism a little better.
Listen now, and join the movement towards awareness, inclusion and understanding.
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Transcript
00:00:09
Speaker
having this perpetual notion that you just are different. much more likely to identify a child as being autistic and in need of support if they were called Jack rather than if they were called Chloe.
00:00:26
Speaker
It's not acceptable that we've got young people in complete states of burnout because experienced trauma through different experiences.
Introduction to 'This Is Autism' Podcast
00:00:34
Speaker
Hello everybody and welcome to This Is Autism, the podcast from the North East Autism Society.
00:00:39
Speaker
My name is Kerry Highcock and I'm the Family Development Manager here at the charity.
Meet Charlie Hamilton: Education Consultant and Coach
00:00:43
Speaker
Today we're going to be talking about a late diagnosis with Charlie Hamilton. Charlie is an education consultant and coaches late-diagnosed neurodivergent women.
00:00:53
Speaker
She also brings a wealth of experience in supporting young people and has a personal perspective on autism that we're really excited to explore today. So thank you so much for joining us, Charlie. So I guess I'll just get straight into the questions. I know you were diagnosed quite late, later in life.
Charlie's Autism Diagnosis Journey
00:01:10
Speaker
and How did it feel when you got diagnosed as autistic?
00:01:14
Speaker
um It's a really interesting question because I've come full circle, I think. um Initially, filled and need me for validation, for this sense of, oh, that's why. And I think a lot of individuals who have had that, received that identification later on in life will understand that.
00:01:40
Speaker
In a way, it will relief. because it it brought clarity to a lived experience that was really quite hectic, quite disrupted, and in many places quite traumatic.
00:01:53
Speaker
um I think it provides a narrative for your struggles and the differences that you you feel. I think it's very common for late diagnosed, particularly, I mean, in my case, I work primarily with autistic women,
00:02:12
Speaker
but One of the phrases that I hear a lot is, I i was always on the periphery, or I was always slightly outside of the circle, something to that effect. And I think this sort of, this identification helps to explain why that might have been.
Insights on Autism and ADHD Assessments
00:02:30
Speaker
um it enabled me to kind of sort of rewrite my personal narrative. So I thought that was really, that was, that was great. um And for a while i sat really contently with, with this identification because simultaneously I, I had my autism.
00:02:49
Speaker
I use the word diagnosis, but I prefer identification. I, I had my autism assessment, if you will, and um I had my ADHD assessment. And actually I was probably more surprised, but no, was i No. It was much later that I kind of sort of did a lot lot of digging into the autism and ADHD combination, this AUDHD. And I think, I think it's really interesting. is it Anyway, going on a tangent again, off on a tangent, I had those assessments and it was, it was good. It was good. I thought, I thought I was, um yeah i was finally going to find my tribe and I was going to be able to offer an explanation to everybody.
Emotional Processing Post-Diagnosis
00:03:33
Speaker
for all the things that I am. And then the grief started and it was this this just this sense of how come they didn't see? How come nobody noticed?
00:03:47
Speaker
You know, what all of those things. that I had to endure. not that everybody doesn't have their own difficulties in life, but things like having to change school, being bullied as child, having this perpetual notion that you just just are different and not understanding quite why.
00:04:05
Speaker
um and when I was little, little, it was something that I could sort of create a really mystical narrative for myself. i I used to decide that I was very clearly and obviously an alien visiting planet Earth.
00:04:19
Speaker
And um observing, my role was to observe everybody because there was no way they were like me. and And that made made it slightly easier when you're five.
00:04:31
Speaker
But as you get older, you you know you wake up and smell the coffee, literally. And it kind of sort of, I don't know, you just realise that you are just just different, just different.
00:04:42
Speaker
um So, yeah, there was a lot of grief. I think the diagnosis, the identification was a signpost. So it enabled me to kind of then go on and get support for different specific things that I had challenges or or or notable um neurological differences facing.
00:05:02
Speaker
um I could do that. But when I say I've come full circle, it's because I've got this point now where There's so much in the press about how many people are being diagnosed with autism, how many people are being diagnosed with ADHD, quote unquote, that there was a time when i was i was quite, don't know if proud is the word I'm looking for, but I was comfortable.
00:05:28
Speaker
i I wanted to be assertive in myself, in my own narrative. And I wanted to be able to say, this is me. You know, this is me. I'm autistic and I have ADHD and I'm also a load of other stuff.
00:05:43
Speaker
And it wouldn't make any difference. And now I hear conversations on the radio. i hear conversations happening in the coffee shops. And it's making it less comfortable.
00:05:56
Speaker
No, I completely get that, Charlie. and That makes a lot of sense. I was listening just this morning and ah at a an appointment. The telly was on. in a public place, lots of people were watching it and it was about ADHD is overdiagnosed. And somebody on there was saying, and you know, people with ADHD just need to find out what the challenges are and kind of sort them out, you know? And I thought, wow, oh my goodness, how invalidating for aut for autistic neurodivergent ADHD people, you know, that have took so long to get to the point where, God, now I get it. I understand my myself.
00:06:31
Speaker
and And you get that bit of validation and then somebody comes along and almost takes it from you. Yeah. Yeah. I can imagine that's really hard. And it's it's more acute, I think, at the moment for some reason.
00:06:43
Speaker
Well, I know what the reasons are, yeah. Yeah, it's yeah everywhere. That messaging is everywhere at the moment. And it's certainly something at Northeast Autism Society, we're very keen to dispel and these ideas that, you know, we're on an increase and we need to, you know, it's back to the medical model, isn't it? It's almost like we're reversing 100 years back backwards in many respects. um So when you got your diagnosis, so your official piece of paper that said, you know, I am autistic, I am ADHD or I am ODHD, if you prefer that term.
Finding Support in the Neurodivergent Community
00:07:19
Speaker
What helped you?
00:07:21
Speaker
As an adult, what was it that really helped in those moments? I happen to have earlier on in my life. taken a master's in, in applied psychology and and coaching psychology. So i was surrounded by coaches and it was really, um, empowering. I hate that word so much, but it was, it, it was useful to have people who they weren't therapists.
00:07:49
Speaker
They weren't going to um unravel my head. Um, forgive me, therapist friends. because I've been to to many of those over the years, that these were um solution-focused, action-oriented now practitioners.
00:08:06
Speaker
And that was quite helpful um working with a few of those that were either specialists or neurodivergent themselves. I prefer, personally, I prefer to work with neurodivergent coaches.
00:08:17
Speaker
um It just saves time, I think, if anything. Um, so that was, that was good. a tri I tried, dabbled in the autistic community connection.
00:08:28
Speaker
So, um, I kind of, I think there's, there are loads of things that we all do once once we get this kind of identification or even actually before really. Um, I think that, that,
00:08:41
Speaker
I have yet to meet a late diagnosed neurodivergent woman who hasn't done more research than your average doctoral student in neurodivergence and autism and how it presents in women and all this sort of stuff.
00:08:56
Speaker
So I didn't really need much. um I didn't need sort of the literature, if you like. I i needed the community. So I went out to sort of Facebook and joined a few groups. and And even locally, we've got a wonderful, in Thanet, a little plug for them. We've got neurodivergent friends of Thanet. And um that was nice. that was That was going to socials and um but really sensitive socials so that it wasn't just the situations were always really beautifully crafted and not overwhelming. And it was just it was just wonderful. And that was nice because you didn't have to,
00:09:35
Speaker
the The wonderful thing about being surrounded by neurodivergent people is you there's no need to give an explanation. You don't have to do that thing where you apologize before you speak or you check how things land.
00:09:50
Speaker
youches You just, you just are. And that is an unbelievable lightness of being. um So that was, that was good. There's a lot of self-compassion and reframing, which is a huge part of the coaching that I do now.
00:10:07
Speaker
um So there's a lot of revisiting um in a sort of a light touch way, situations that have taken place in your life that you, you're dragging around with you.
00:10:19
Speaker
um And it's, revisiting those but in a really really self-compassionate way so looking at them through the lens of someone who should have been seen as neurodivergent person and in my case as an autistic person and and and what and wasn't so what would have happened if I'd had my assessment as a little child and my mum had been better informed or or you know my family knew what to to do to create an environment where I would thrive, where I would be sensorially, what's the sort of, don't want say balanced, um but just just, yeah, there was just ah an understanding that wasn't there, obviously. Then I got loads of advice for the Disabled Students Allowance and then access to work and stuff like that, which has been really good.
00:11:13
Speaker
I'm a very, very honest person. a very straight talking person and I always felt like I should never take advantage of anything that that society has to offer me. you know so I've never you know claimed benefits anything that i didn't think that I needed in any second circumstance.
00:11:37
Speaker
But access to work is actually the things like the coaching that it provided me and um the assistive, assistive, I can't remember the word. You know what I mean. um the The technologies that are recommended to me um were just i eye opening. They were really useful and
Task Paralysis and Camouflaging Behaviors
00:11:58
Speaker
they've, yeah, they've certainly supported the way that i work and made it easier for me to manage my physical sort of wellbeing. Um, executive function support, I think, you know, with the ADHD, that was a huge one for me. Um,
00:12:18
Speaker
And executive functioning, we know that there is no formal um definitive definition of what that even means. But i was I found it very useful talking about things like task paralysis um and really going into what that actually looks like for me as an individual. um and And also taking away the shame of task paralysis.
00:12:42
Speaker
um Yeah, just making sure that People understood that it wasn't me just procrastinating and not doing my work because it is, it's particularly, it's an area that's really, really hard to explain to people.
00:12:58
Speaker
Um, and then reduced camouflaging. I joke that, that once somebody gets their kind of autism, um assessment, suddenly everybody appears in Lucy and dungarees and dyes their hair purple and and get some sort of septum ring or something. you know it's it's I'm joking because half my friends are like that basically. and But It's almost like for me anyway, the neurodivergence got um cranked up a notch, if you like.
00:13:34
Speaker
You go through this this phase of it can be weeks, it can be days, it can be you know months, years, God forbid, where you kind of you're just discovering what it means for you.
00:13:47
Speaker
to live in your true self, to live as an ah as an autistic person and what that autism actually looks like for you. So I would find myself stimming and and becoming aware that I was stimming.
00:14:01
Speaker
Like suddenly just really becoming acutely aware that when certain things happened, this is what I did. and i And before i just thought it was a bit odd or a bit shameful. um I squeezed my hands very tightly. And I can remember being a child and doing that all the time. And as I got older, it It sort of reduced primarily because of social circumstance, but I, and I was more able to sort of manage it for the neurotypical world. But now I know that's what I do. That's one of my stims. I don't stop myself from doing it. Because you don't have to apologise, Charlie, do you? No, I don't. I don't have to apologise. But also there's a kind of, um you know, I'm 50 now. So I'm kind of that age where I don't give two hoots really.
00:14:52
Speaker
you know i do like I will tell teenagers off in the street because I just don't care if they drop litter. I'm going to tell them. um You know, it's it's it's because like it's like, so what if they think that I'm a fuddy-duddy or that I'm just a little bit different? I i don't care. But i I know that it matters an awful lot at different ages in your life. Yeah. And that's took a long, I would imagine that's took a lot of emotional processing and trauma and anxiety.
00:15:20
Speaker
recognition of your self-identity to get to the point where you can now say I am me and I'm quite happy being me that takes a lot doesn't it it must take yeah a lot a lot yeah and there are there are days where you just think oh why why do I have to keep explaining things or or why do i even have to give a reason why can't I just say i I don't feel like going to your Christmas drinks this evening with 40 people that I don't know.
00:15:51
Speaker
um Because it sounds like hell on earth for me. And it doesn't reflect, it's not a reflection of our relationship, of our friendship at all. It's just that I can't do spaces like that, particularly at Christmas time when it's back to back.
00:16:08
Speaker
um You know, and you feel you feel like you should be able to in society. Anybody should be able to say, actually, no, I don't want to go. Yeah, completely. I think that being unapologetically yourself and kind of not having to mask is so important. And i so I had a lovely interaction a few weeks ago with my young people that i work with. And we were doing, we're creating an animation about masking, which is just going to be amazing. I'll send it across to you and everybody listening.
00:16:38
Speaker
and But I said to one of the young people in the group, you know, are you masking now? you tell me a little bit about masking. What do you feel like in this group? And this young person said, I've never masked in this group because I can just be myself.
Creating Safe Spaces for Neurodivergent Individuals
00:16:52
Speaker
And I said, tell me about places you do masking. And we got talking about school. And she said, you know, Kerry, here, i know I can doodle on my notebook because we give them all doodle notepads. I know that I can get up and have a bit of a skip around if I want to. And nobody, including the staff, which is is very important to this young person, is going to say, you know, what are you doing? Why are you skipping around? We just let the young people be who they are in that space.
00:17:18
Speaker
And actually a lot of the staff are neurodivergent themselves, so we're all happily, usually happily just skipping and doodling around anyway. But I thought, wow, what a what is it we've created in this small room in the middle of Durham where we've got a young person now feel safe to be themselves? I just think that's beautiful. I just think it was just a lovely moment and I thought, oh,
00:17:38
Speaker
this is, we've got it right in this this space, in this moment. We need more more of that, don't we? We need more. ala Charlie, m what do you feel were the barriers for you to diagnosis or perhaps other women that you work with?
00:17:54
Speaker
What are kind of the main barriers that people, you think people encounter when they're going for a diagnosis? I think most people are very, actually very aware now of some of these. so I guess I'm just going to reiterate what people already know, but a lot of early research was based on boys. And that makes in in layperson's terms, essentially, that's, you know, suggesting that we're looking for something that perhaps isn't we're we're basing, um if you like, assessments on a on a set of criteria that were defined for
00:18:27
Speaker
a different biology, a different presentation, as they say. So I think, and also the time of when I was born in the seventies, it was very very rare that,
00:18:39
Speaker
someone who i suppose now if the, if Asperger's hadn't been kind of subsumed under, under the umbrella of autism, I think that's probably where I would sit, um, in many, in many areas of my life, but that doesn't, that doesn't exist as a standalone diagnosis now. And back in the day, my mum can recall people saying, you know that autism boys are autistic and it was as cut and dry as that so so I was treated with a ah number of different medications but not by a psychologist or by anybody who was in any way supporting my neurology um other than chemically camouflaging and masking so we talk a lot about this kind of sort of
00:19:28
Speaker
that autistic women kind of adopt strategies so that they sort of appear less autistic. And we get, there's there's a theory, because again, we we have years and years and years of research to do.
00:19:42
Speaker
But the current thinking is that girls are um generally quite compliant in a sort of a social social context and quite good at reading the room and working out what what behaviours they need to exhibit in order to fit.
00:20:01
Speaker
And I don't think it's for for nothing that there are many amazing autistic actors. I really don't. um and And I i loved theatre because you could just, I mean, it was just second nature to be somebody else.
00:20:18
Speaker
um So, yes, so I think the camouflaging and the masking is is a challenge um because if you're holding it together externally in the big wide world, with your friends or with your family or with your with with your children, you're breaking down into thousands of pieces when you get home on your own.
00:20:36
Speaker
it's It's very, very hard to get the support that you need. There is a theory around the female autism phenotype. So basically the way that women present, um that we have we have more acceptable interests, for example. um So these focused interests of ours might be perhaps more conforming and not so sort of standout-ish um like uh i don't know a specific um type of tractor or something which is a super super um cliched kind of generalization there but i once heard somebody say when a woman or a female uh lines up washing
00:21:19
Speaker
it's considered good housekeeping, but if a ah male was to do it would be considered autism. And I just thought that was brilliant, you know, in terms of that gender. Yeah, yeah. I've i've heard similar kind of anecdotes, but it's just, I think it's almost like society is so keen to continue this stereotype that it's that it's boys, boys, boys, boys with this, that that it's just not looking not truly seeing.
00:21:44
Speaker
um So there's that. there's i I use that concept very loosely, the female autism phenotype.
Challenges in Diagnosing Autism in Women
00:21:50
Speaker
So the way the way that it presents, because I actually think that it's an internal and an external presentation. I don't think it's actually gendered.
00:22:01
Speaker
I suspect that, yes, there are probably more girls with the internal phenotype, but and and more boys with this kind of sort of external exhibition of of autism. So it's easier to to detect from a younger age.
00:22:18
Speaker
um But I don't like necessarily gendering it. Misdiagnosis, I think it's something like 80% of autistic females are initially sort of inappropriately diagnosed.
00:22:29
Speaker
So, i mean, I could tick them. um Social anxiety, tick. Eating disorder, tick. Borderline personality disorder, we we argued our way out of it. but um rather than being being autistic. In fact, it was only because I was in the Morsley for something else and I had a really sharp psychologist that this whole sort of and investigation began. Wow.
00:23:00
Speaker
So if you'd never come across that one person... Yeah.
00:23:05
Speaker
I'd still be there... as an outpatient, but being treated for a completely different thing. And you're, you're, you know, you're one of many as the research suggests, Charlie, but just on a practical level, I was in a group um last year with six women, all diagnosed ADHD, and all six of them had been misdiagnosed with the border the borderline personality disorder, as you just described. And I just couldn't get over the the results of 100% people My God, and the stories and the journey and the trauma that they'd endured by being put on all manner of medications for borderline personality disorder, you know? And wow, if it's no wonder people's mental health is is so fragile.
00:23:49
Speaker
um I think I read an article by Gina Ripponi. um you know, she wrote the um The Lost Girls of Autism. um And I think she said something along the lines, imagine you were told that teachers, when they were presented with identical vignettes, so little little kind of skits of hypothetical kids, were much more likely to identify a child as being autistic and in need of support if they were called Jack rather than if they were called Chloe.
00:24:22
Speaker
Wow. Yeah. Identical. That's powerful stuff. Powerful stuff. and And on that note, Charlie,
00:24:38
Speaker
So don't go anywhere, folks, and we'll see you all in a little bit.
00:24:44
Speaker
Hi, while we're on a quick break, I thought i'd tell you a little bit more about the Family Development Service here at the North East Autism Society. The Family Development Services provides support for families pre, during and after diagnosis and includes a variety of services, including our parent and toddler groups, autism hubs, workshops for families, a dedicated enquiry line and our resource site as well, which can be found at the Family Resource site on the North East Autism Society website.
00:25:10
Speaker
So if you go to www.ne-as.org.uk and go along to the family development site, you can find all the information there.
00:25:24
Speaker
Charlie, welcome back to our podcast. and Lovely to be chatting to you about late diagnosis in neurodivergent women. My next question for you is, do you feel there was any consequences for you personally of getting a diagnosis so late in life?
Mental Health Impacts of Late Diagnosis
00:25:39
Speaker
I suppose it depends how it depends what lens you you use to look at this question, I suppose. There were loads of really great things and loads of positives. I think the cost was significant to not not having it, not having that that formal assessment. um I think i my mental health suffered for years, um primarily because of just exhaustion, really, um and burnout.
00:26:09
Speaker
I've had significant episodes of burnout. um And, they you know, we've we've discussed this in other forums. You know, this is a different, type of burnout to the burnout that we see in an article in a women's magazine. You know, it's ah it's a debilitating, can be months, can be years of just devastating exhaustion and and and mental, emotional, physical.
00:26:36
Speaker
um And I think a lot of that could have been prevented. So when I look back, I think that's just, that's really awful. I also have um an eating disorder um and and have had since I was 15,
00:26:48
Speaker
And actually, again, this is this is just how life can be really quite interesting and also really annoying at the same time. It was only very recently that somebody, another practitioner specialising in autism research, actually suggested that something related to that ED could could in fact be me stimming, using food. And we unpicked, very loosely unpicked some of it.
00:27:15
Speaker
And it just started another snowball. so that in itself is just, it's exactly those moments that I'm just so frustrated because like if I could have, if we could have caught that early enough, I wouldn't have had a like a lifetime of just going between anorexia and bulimia, anorexia, bulimia, b d BD, BD, you know, just all those things. Yeah.
00:27:38
Speaker
Years of misunderstandings. that I cannot even begin to tell you the amount of times that I've been made to feel very, very stupid, just being isolated, pushed out from the crowd because I've said something or or not said something that I was supposed to have have said. Yeah.
00:27:58
Speaker
you know, this isn't the forum for it, but I mean, there, there are a few moments in my life I can, I still get flashbacks because I can, I can feel the general sense of unbelievable pain and frustration at not being understood that I was, I, my intent was never malicious. I was never trying to overstep the mark. I was never, I thought I was doing the right thing. And, and because I don't have anything to explain that,
00:28:24
Speaker
I didn't have the language to explain that. I suffered. The camouflaging costs is, again, is related to the exhaustion and the kind of sort of depression and all of that kind of stuff. But it's but it's more than that. it It has so much to do with your sense of authenticity and how you live your life and and how integral you are, because I often find that one of the most beautiful qualities of many autistic people is this this remarkable sense of integrity and justice and fairness.
00:29:00
Speaker
And for me to accuse me of something that I didn't do is well, it's akin to to shooting me with a bullet because it it's extreme. It's like the the I'll ruminate on something for weeks afterwards and it'll be something so...
00:29:19
Speaker
you know, passing, so kind of sort of trivial for another person. But for me, it will be, that that's me. you're you That's a slight on me. Employment and relationship challenges. I mean, i won't bore you with those, but um i've I've been bullied in the workplace um by employers.
00:29:40
Speaker
I've been treated abysmally by employers. I think one employer called me over-emotional. Another employer called me um a workhorse and that I was probably better suited for a for a job in the city because it would be more demanding and that I was too far intellectually too far ahead because I was just really efficient. I just really, i love Excel and I like, you know, I've always said to people, I just, I really enjoy what I do usually because I want to be useful.
00:30:12
Speaker
Again, not to go into too much psychology here, but it's that to fill the void of not ever fitting in completely. i want to always go above and beyond. I want to, I want to be seen to help. I want to really help you.
00:30:28
Speaker
Because if I really help you, you'll really, really value me. And if you really, really value me, then then that makes me whole. that's makes me That makes me seen. And and so that's this constant people-pleasing cycle that that, again, so many autistic people fall into. And then it's just that, like I said before, it's the grief, it's the processing of the lost time.
00:30:51
Speaker
Just, you know, those those consequences, just looking back going... Well, that was three decades. i could I'd quite like back. Absolutely. So I could speak you all day, Charlie, because there's so much, so much to think about here. Every time you speak, I get a different question, but I'm i'm trying to stick to my stick to my determined questions. and we'll We'll get you back on. Absolutely. So what are the benefits then of a late diagnosis?
00:31:18
Speaker
I mean, there are lots. Acceptance. I think I finally go, actually, you know what? I'm just idiosyncratic. I don't, I don't even know how I'm sitting at the moment with, with any form of kind of term or how other people refer to it as a label. I don't, I don't, I'm just, this is just me.
00:31:41
Speaker
And, and I'm a lot more, um, I'm a lot kinder to myself. post-identification really and that's a long journey towards self-acceptance I can look back on things that have happened in the past and i can explain them now.
00:31:58
Speaker
And I think being able to explain those struggles and and giving them a ah sort of some sort of terms um has been really useful because that that helps you kind of sort of detach yourself somewhat from the pain that you you're carrying constantly around with you. So I can look back and I'm much, much more compassionate to little Charlie and I can say, well, you actually, come on.
00:32:22
Speaker
Look at the space you were in. I mean, I know there's this, I was looking yesterday and there's like these TikToks where these, these um again, not to cause any offence, but they're predominantly coming from Americans. and with They're doing this thing where they're loving them, their little self, and they're having this dialogue with their with their younger self. And it's it's really fascinating, actually, because it's all about self-exceptions ultimately, isn't it? and's And there's a lot to be said for healing your inner child. I can either, depending on the day, find it hilarious or find it find it very fascinating. um
00:32:56
Speaker
But really what i what I wanted to say is that that it gives you an opportunity to to look back on your childhood or your teens or your young 20s and go, actually, you know what?
00:33:08
Speaker
That really sucks that you had to experience that. And you had to experience on your own. and you didn't have anyone around. And you did your, you really did your very, very best given the circumstances. And you know what? Now is probably a good time to put that one to bed. And and it takes a long time to do that, a really long time and probably hours of therapy, but it's helpful.
00:33:34
Speaker
It is part of that process. And I think that's really good. um And then for me, it's about personal advocacy.
Advocacy and Academic Pursuits for Inclusion
00:33:42
Speaker
Because I, particularly when i was a teacher, I was promising, I promised the kids, the neurodivergent children, that I would never shy away from exercising my rights.
00:33:53
Speaker
um And i've've I take that very seriously, that that that claim. So I get involved in lots of different um advocacy groups. um obviously Obviously, my work through the Autistic Girls Network is part of that.
00:34:09
Speaker
but um I'm doing a doctorate at Lancaster in neuro inclusion, particularly in education. um So all of that is about making sure that we have access to appropriate support, because I really do believe everybody has potential to have an enjoyable and and and flourishing existence.
00:34:30
Speaker
on earth, it's it's society that is preventing them from from having that experience or potentially preventing them. And so we need to work harder to to address that. I guess permission to unmask, although it's very difficult, i there's lots of literature on this. I i don't know if of if I'll ever fully unmask with somebody who's not sensitive to, neurodivergence and ally or the neurodivergent themselves.
00:35:02
Speaker
I think I would find, I find it quite difficult. Like I, I might want to, um I do this, this thing with my, my fingers where I create like little trees, I wiggled them. And I also crook my neck because I like to hear the sound of my, the bone.
00:35:18
Speaker
It's really weird. So it's it's little things like that. So so permission to unmask, but maybe not 100% there yet. um Yeah, those are those are the some of the positives.
00:35:31
Speaker
And then I get to meet people like you. Of course, Charlie, and ditto. Absolutely. This is honestly one of the best parts of my job. And I completely get as well that promise that you made to the young people because I kind of did a similar thing in terms of,
00:35:46
Speaker
you know I want societal change for you. I want it to be better. It's not acceptable that we've got young people in complete states of burnout because they've experienced trauma through different experiences.
00:35:58
Speaker
um and he cut out I was clearing out my office the other day, actually, and I found a little card from five years ago, it's a Christmas card that I've kept off a young person who I'd worked with, and she'd wrote on it, just very small in the corner, it said, thank you so much for giving young people like me a voice, and honestly, as I say that, I get little goosebumps, and I've i've kept it, I've popped it up on the shelf, because I was like, oh, that that is what it's about, that is you it that's that moment, you know, and for anyone that works in that field, or supports autistic young people, children and adults, when you get that moment, it's like, oh,
00:36:33
Speaker
That's what it's all about. Well, yeah, without a doubt. it's it's it In society, it's about that. I think that we have a ah an obligation to create some sort of space, not necessarily speak on behalf of, because I think i think everybody has ways of communicating. It might not be the way that we want, but but but they have ways. I think it's about creating the avenues for people to communicate be seen and be heard they wish.
00:37:06
Speaker
i think it needs to be there. Like things need to be inclusive. Million percent behind that one. and The last question, but it's quite a big question and you've probably got a lot to say about this one. and Well, I know you will have, but I guess to summarise, what do you wish society understood about autistic
Empathy and Understanding in Autistic Women
00:37:26
Speaker
women? Empathy is bi-directional. So non-autistic people also lack empathy.
00:37:32
Speaker
um, social insight into autistic culture, I think. And and I think it's empathy is a two way street. So I think that's that whole Damien Milton double empathy problem.
00:37:43
Speaker
I think it's really, really important that people understand that but you know be ah it's almost akin to different cultures and that we need to sit with the other culture and be generally receptive to that culture in order to to to be able to communicate, to engage in any meaningful way.
00:38:01
Speaker
And that applies so obviously when we talk about languages, but it also applies for neurologists, physical abilities, everything. You know, if you want to understand, see walk a day in my shoes, you know, it's, it's ask me, ask me what it's like to be me. Ask me what I like, ask me what the terms are that I like to, to have used around me, you know, get involved. um So I think that's important. Empathy is bidirectional.
00:38:31
Speaker
I think this idea of difference as opposed to deficit, I think is hugely important. Um, I really, I constantly reframe people's narratives.
00:38:41
Speaker
Often when I'm having conversations, people say, oh yeah, he's bit weird. No, he wasn't weird. No, wasn't. He was different. He was different. The way that he expresses emotions are just different.
00:38:56
Speaker
You know, oh, he didn't want to sit in a room full of people. Yeah, so what? We've got to get away from wanting everybody to be the same. Camouflaging and and masking is hugely costly.
00:39:07
Speaker
um I think people often underestimate um what that entails. um And I think it would would be helpful if people read up on that a little bit more, because it's not just you sitting on your hands so that you don't twiddle your fingers.
00:39:23
Speaker
It's everything it's it's tolerating the light levels the sound levels that it's just yeah I think I think people could really afford to spend a little bit more time educating themselves the female autism phenotype um I think is important but it's that internal presentation I think is really important I think people need to understand that they're what we talk about when we talk about it internal and external are just just ways of manifesting your difference. So some people might be more um externally focused, so they they might be likely to express themselves verbally or make a noise of some sort, or perhaps they're physical, much more physical, whereas the internal might be more compliant, more inward facing, so they might be more they quieter, um often go unnoticed, hence, you know, we go back to the diagnosis rate.
00:40:16
Speaker
um Intersectionality, I think, is really important. It's an area that I'm not a specialist in, but I'm definitely interested in. um I think it's really important to look at um autism alongside other identifying characteristics and how that experience is lived by people. um I'm particularly interested in in faith and and autism.
00:40:38
Speaker
um I think that's a really, really interesting area. Systemic change ultimately is what's needed. So, you know, it's training for as many professionals as you can find to be able to understand autism in all of its manifestations.
00:40:56
Speaker
I think we need to get towards this this super inclusive society where people shouldn't need to say, by the way, i in front of my entire class, I just need to let you know that I've i've got ADHD or I'm i'm autistic.
00:41:10
Speaker
You shouldn't need to do any of that. We know enough now to have a ah baseline that is super inclusive. And that is where I would like us to get.
Conclusion and Acknowledgements
00:41:23
Speaker
Well, thank you so much, Charlie, for coming on the podcast. And to all our listeners, thank you so much for listening. If you have any questions or comments about anything you've heard, then please get in touch with us at info at ne-as.org.uk.
00:41:38
Speaker
You can follow the Northeast Autism Society on Facebook, Instagram and LinkedIn. And the podcast is out every month. So please subscribe to This Is Autism. And just a big shout out for our lovely Charlie, who does some incredible work as well, as that which we didn't get chance to touch on really. But um I know you do a lot coaching for and women who are new late diagnosed neurodivergent women. And I know your work is incredible. So I'm giving you a shout out, Charlie, because I know you're just wonderful at what you do.
00:42:07
Speaker
So go and find her if that's what you're looking for. Thanks.