Ep. 3 What Happens When… You Find Out You’re Autistic?

Join Gem for this episode, "What Happens When... You Find Out You're Autistic?"

In this episode, Gem talks about learning about Autism whilst a family member was in severe Autistic burnout and having brainwaves about how neurodivergence shows up their family. Whilst walking along a disused railway in Scotland, Gem also shares their own process of considering formal- versus self-identification, the pressure to unmask and the liberation of living in alignment with our neurotype.

Thank you so much for listening! I'd love it if you'd consider sharing and reviewing this podcast!

Find out more about me and my work at www.gemkennedy.com and @thegemkennedy in all the usual places.

Helpful links:

Autistic burnout: https://www.autisticadvocate.co.uk/autistic-burnout

An excellent book on sensory well-being: Looking After Your Autistic Self: A Personalised Self-Care Approach to Managing Your Sensory and Emotional Well-being by Niamh Garvey

Neurodiversity Paradigm: https://neuroqueer.com/neurodiversity-terms-and-definitions/

Kieran Rose: https://theautisticadvocate.com/

The Social Model of Disability: https://www.inclusionlondon.org.uk/about-us/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/

Autistic Masking: https://theautisticadvocate.com/autistic-masking/

Thriving Autistic - 6 week Discovery Programme for late-identified Autistics(written by Gem) and monthly socials: https://www.thrivingautistic.org/

Transcript

00:25

Testing, testing, yeah, it's working. Okay? It's like, I don't even know. Three hours after I set off? Two and a half hours? And I've walked through the town, and now I'm on a railway, an old railway track, so I've got two miles left. I've done like four and a half. This is long.

00:53

I was panicking a little bit in the in the town, because it's really not my favorite to be just walking along through a town. I felt really self conscious. You know, the whole being perceived thing is not super fun. So now I'm walking along a disused railway track, and it's really nice. I haven't seen any people for quite a while.

01:23

I'm not really sure if I have much to say. Guess, just maybe that I'm quite proud of myself for managing to do this walk. It's not often... like I'm really adventurous in my car. I'm adventurous in my car, but it's not that often that I can just walk around like long distances in places I don't know without feeling quite nervous or anxious. So that feels good.

01:55

It's super windy, so I have no idea how this audio is going to turn out. It's really interesting as well, because my body actually doesn't feel like I'm struggling at all during the walk. That's really cool. It's my mind that is, at times panicking, thinking my body can't do it, or what if I'll be so far away that I can't walk back because I'm so tired, or something like that, but my body is actually... like feels good so I'm really thankful for that.

02:34

Just really realizing how good it is for me to walk and really to talk out loud. Back home, I feel like I wouldn't do that. I think I feel like there's too many people around. And I've walked past people here, obviously I've stopped talking, but not that often. I haven't seen that many people.

02:59

I've got a sound bath later on with the women who owns the house that I'm staying in. So that will be interesting and cool. I just want to feel really inspired and excited about this podcast, and feel like I'm putting something that is meaningful and creative and useful into the world.

03:35

So what happens when you find out your autistic and ADHD? I guess for different people it works well, I don't guess. I know for different people it works differently, but there's definitely a lot of overlap in terms of experience of lots of late identified Autistic and ADHD people that I talk to, and I've talked about my experience a little bit on a different podcast, but I haven't recorded a series of my own podcast since before I realized I was Autistic. I think, I had realized, I think I just wasn't totally sure.

04:21

And so there were times where I was referencing or playing or figuring out, talking about it like that, talking about my experience as an autistic but then there were other times where I would sort of doubt myself and not do it.

04:42

Someone else is coming. Why? Why people? Why?

04:51

Hello.

04:52

Okay, they're gone. So what was I saying?

05:00

Oh yeah. So I guess in the previous series of the podcast, I was still trying to figure out, kind of thinking or being pretty convinced that I was Autistic, but not necessarily knowing what to do with that information, or you know whether to do anything with it. So I guess I have an update on that and for reference, or maybe just so you can imagine where I am, if that's something you want to do, I'm now walking through woods.

05:41

So I feel like the first part of the walk was about the Shit Dad Club, and the second part is about being Autistic, and who knows what else will come up but there we go.

05:55

It wasn't until 2017, 2016/17 was when I was trying to figure out what was going on for a family member. They had a very, what I now recognize was a very bad or very severe Autistic burnout. And at the time, I really had no idea what was happening, and just went on a massive research dive, or, you know, massive hyper focus to try and find out what was going on. And I feel like there was such, at that time particularly, I feel like there's a bit more now, but at that time, there was such limited information about what it meant to be Autistic as a young person that maybe didn't present in a stereotypical way. And so where we ended up was learning, or I ended up learning about sensory processing disorder and thinking, "Okay, well, this is, this is definitely a thing," and kind of following that thread and having an assessment.

07:14

Because when I spoke to the GP, their advice was, there was nothing they could do, they wouldn't come out to the house to see my family member, and I wasn't able to get the family member to the GP because they weren't able to leave the house at that time, they were so overwhelmed and so burnt out, and so I was told to find a private child psychotherapist, and hopefully that would help. And I just knew that that was useless, like having someone who can barely talk because they're so burnt out and is feeling super distressed, if I just said, "Oh, hello, here's a person you can talk to", that would not have helped in that moment, particularly, like it was not age appropriate. It was not... and not to say that psychotherapy doesn't work in other situations. To be really clear, I just think this is like, not clearly, not the suggested, this is not the solution.

08:17

So we found out, or I found out lots about sensory processing disorder, and then from that, kind of ended up reading that lots of people who experience sensory processing disorder are Autistic. SPD is not necessarily... It's not a diagnosable thing on its own in the UK currently, and I'm using the term sensory processing disorder, but also I don't like it, so sensory processing differences is what I would say. But I guess at the time that was my understanding - that there was something "wrong". And then, as I learn more obviously, and I learnt about neuro affirming language, then obviously that whole paradigm shifted for me, and I understood more about neuro inclusivity and what it means to not use language that is pathologizing.

09:21

All of that to say, I guess that it meant that this whole world of neurodiversity opened up to me that I had not come across before in the same way, and I had known very little about the Autistic experience, very little about the ADHD experience probably just, you know what people often know who have like, very kind of stereotypical knowledge about that stuff.

09:52

And in the process of investigating all of that and learning more about it, I remember speaking to Kieran Rose, who is an excellent Autistic advocate, who calls himself The Autistic Advocate, if you want to look into his work. And I remember him saying to me, "You do know that it's really common that at least one parent is autistic too?", and me just being like, "Oh, that's so interesting". It just led to me having a lot of brainwaves around how neurodivergence shows up, I guess, in my immediate family. And it took time, like it took time, to learn more about it, and again, learn the non pathologized version of the Autistic experience, which obviously is so diverse, there's so much experience within what's described as Autistic, so learning about all of that stuff, and then initially thinking, Am I autistic? And then discounting it and thinking, No, probably not.

10:53

And then over time, just kind of reading more and learning more and realizing that, yeah, it really, actually did match my experience quite closely. I'd always felt like an alien from a really young age. I always remember feeling just very misunderstood by people around me, and like my internal experience of feeling very connected to, I guess, something bigger, feeling very connected to a sense of spirituality, but not having any idea where to put that, and having a lot of big questions about why, why do we exist? What is the point of all of this? And not to say that that is an Autistic experience, but just, you know, I think I thought I'm just an alien, or like I'm in a human body, but I'm not actually from here, and no one really understands me. And that was definitely reinforced at school, where I didn't feel understood, and in my family of origin, where I didn't really feel understood a lot of the time. So I definitely grew up with this feeling of difference and my what I was observing in other people really not matching my internal experience.

12:15

I didn't really have friends that I felt like I connected with at school on like, a deeper level than just I don't know this the same things we happen to be interested in. I guess I'll just fast forward by saying I felt like I was different. I never understood why, and it wasn't until I learned about Autism and how that experience shows up for people in different identities. Then I was like, "Oh, that really fits me". And looking back, I could see things like I was hyperlexic so I could read from a very young age, I think, like three. My mum said that from sort of 18 months, I would have full on conversations. And I guess it was seen as a bit of an anomaly. But like, not really anything, it didn't change anything. I got moved up a year at school, and again, that was the worst, because then people, for some reason, were mad at me, because I enjoyed learning and I hated school, but I did enjoy learning, and I was enthusiastic about learning for certainly primary school when it came to my own figuring out about being Autistic. I remember thinking for a while, you know, it would be okay to self identify, and so to some extent, I guess I still self identify, because I don't have a formal autism diagnosis. However, I did have, I did fill out all of the assessment forms and go through an initial consultation with someone at the Adult Autism Practice in Ireland. And it became, like, really clear, just for me, filling out the forms, answering the questions or the assessments, and then having the consultation, that I was definitely Autistic, and that various family members are also Autistic and so I just thought I didn't... sorry there's a fly... so I thought I just didn't really want, or didn't see the need to pursue any further sort of formal identification.

14:52

And I go backwards and forwards on that. Sometimes I think would it make me more legitimate somehow if I did have it? But then I'm also so aware that it's literally a piece of paper, and I don't mean that it's not important to people, because for some people, having that piece of paper is incredibly is incredibly meaningful, because it explains their lived experience and perhaps why they've struggled.

15:20

And I think for me, there's something about just not needing it. And if that changes, or I decide that I do want it, then fine. But at this point, I'm not really sure what difference it would make. It doesn't make, you know, and I say this from for my life, it wouldn't make much difference to my life. Obviously, if someone's working in a job where they need accommodations or they need understanding from their workplace, you know, there's all sorts of reasons why people might seek formal identification, but I think for me, and where I'm at is not something that I need currently.

16:09

And I think also in the beginning, when we were pursuing, when I was pursuing a diagnosis for a family member, I was definitely in the more sort of the medical model of disability. So that idea that there was something wrong, that I needed to find out what the thing was that was wrong so I could fix the thing or help improve the thing. And for anyone who doesn't know about the medical model of disability, essentially, it's this idea that the responsibility, or the yeah, the responsibility is with the disabled person, like they find something challenging. They are a challenge. It's kind of a problem to be solved, and it really puts the onus on the person who experiences the disability to figure out what they need and to access accommodations, whereas the social model of disability is much more about understanding that a person only experiences their disability to the extent that society does not support them.

17:23

So there are all sorts of ways in which society is not affirming and supportive of neurodivergent people and people who experience all kinds of different disabilities. I guess it's how a lot of people find themselves straddling these two worlds between the sort of medical model of maybe being in a workplace where their needs, their access needs, are pathologized. And so they have to have a piece of paper that says what they need, what they should be able to access. And then this other world that talks about how we should all be able to access these different accommodations, because what works for a group of people, like actually is beneficial to everyone. So for example, if I worked in an office and as neurodivergent person, I'm able to take a break when I'm overwhelmed, everyone should be able to take a break when they're overwhelmed. Yeah, yeah, that's that's just an example of how accommodations can be beneficial to everyone. You don't necessarily need to have a piece of paper or someone saying that you're entitled to these things, right? As humans, we should just be able to do what we need to do, to look after ourselves and our bodies and have the support that we need when that is not something we're able to manage alone.

18:48

I feel like I just went on a big side quest there. So back, back to the main aim, which was what happens when you find out you're autistic? I think for me, there was no ultimate light bulb moment where I was like, "oh" and then I knew. It was multiple light bulb moments that I sort of dipped in and out of over time. And the more that they happened, the more I realized, yeah, like, how much more proof do you need? You keep coming back to these same realizations. So it just became more integrated over time.

19:33

And I think for a lot of people, that is the case when we're late identified, there's maybe things that we read, resources we access that tell us that we're Autistic, or kind of give us some insight into that, and it's only after multiple, you know, I don't know, accessing multiple videos on Tiktok or or reading multiple books or listening to all the things that then we can start to kind of integrate that for ourselves. I think it's definitely, it seems, in my experience, in my practice, and obviously people are coming to me in specific ways. But it seems very unusual that people are sort of accidentally or by surprise, diagnosed as being Autistic. It definitely seems much more common that people are having these realizations from the kinds of resources they can access now and then going on a deep dive, figuring this stuff out about themselves, and then deciding whether or not they want to pursue a formal identification or not.

20:41

I think I'm really struck by something that a client once said to me, and we weren't talking specifically in neurodivergent terms at the time, but I remember they said to me that they had had to essentially relearn to walk, relearn to eat, relearn to sleep, relearn how to move their body. And I really just, I mean, I really related to that at the time, but it's really stuck with me, because now I feel like that is what realizing I'm Autistic and ADHD has meant that I've had to kind of go back to the beginning and really think about basic things that maybe for other people, and not things they think about. But you know, in terms of thinking about masking, for example, that there were so many ways, just ways I moved my body that were not ways that felt good to me, but were ways that I had sort of trained myself to move, thinking that that was what was normal.

21:49

And for an example, because that sounds a bit vague, I did ballet a lot as a kid, and I remember thinking just really absorbing every aspect of it and thinking that was how I had to move my body in order to one perform femininity well, which obviously comes up around gender stuff for me, and in order to pass as a human I guess, you know, as a human woman, that was how I thought I was supposed to move, and so I would catch myself, and I still occasionally do. I would catch myself moving around my kitchen like when I stepped to the side, doing it with pointy toes. And it sounds really strange, but you know, there's the physicality to masking, as well as so many other aspects.

22:43

And talking of masking, I always feel like it's such a complex thing for people to be working through when they have been identified or have identified themselves as Autistic, because a lot of people feel like the aim is to just unmask. And, you know, there's all these books around, like how to unmask and kind of it's really helpful to have information about what masking is, of course, but it can end up feeling like it's the ultimate goal, like the goal is to just be a totally unmasked version of your Autistic self. And for late identify people that can feel terrifying, because, like so many people, feel that there's this unmasked version of themselves beneath layers and layers, and that if they bit like a present, like pass the parcel, if they just keep ripping off all the layers and keep passing the parcel, rip the layers off, pass again, rip the layers off, get to the middle. And in the middle will be this prize, which is, like, the unmasked version of yourself. Well done. You've uncovered it. There it is, and like, that's who you are.

23:51

Now, I just find that so unattainable and unhelpful, because a lot of people end up realizing that they are Autistic, and then feel like, "Well, who the fuck am I then?" Because they hear about this concept of masking and how the aim is to unmask, and where do you even begin with that? And I guess for me, when I'm working with people, and also what I found helpful with myself, or for myself, is thinking about rather than there being all these layers that you have to strip away, what has often happened, or has almost always happened, for all sorts of reasons to people in society, is that we've been disconnected from our sense of what we feel passionate about, like, how we want to live our lives, what we do and don't consent to, what feels good to us and what doesn't. And for me, it's much more about a journey of coming back into connection with those things. So where in your life, for example, are you doing things that do not feel good to you, and yet you're doing them because you feel that you should.

25:09

I'm getting attacked by flies.

25:13

Yeah. So rather than thinking about these layers that we need to strip off, thinking more about in order to reconnect with our the truest, most authentic version of ourselves, in order to connect with that, there's a lot that we need to uncover and think about and maybe try differently and so, yeah, for me, it's not as simple as taking off the mask, because that also implies that we consciously put it there in the first place, and that we know what we're like without it when it's just not that simple.

25:54

The ways in which I've questioned different aspects of my life have basically come come about because I felt like it's not sustainable to continue in the way that they were or kind of hit a wall, and the choice is either to continue to live in denial, or to do what you think you're supposed to do, or to actually do what you want to do.

26:22

And it's only later, like along that road, I guess, that I then found out there's this other layer of neurodivergence, which means that kind of goes to explain, or goes to show why a lot of this stuff has been so hard. But you don't need to be neurodivergent to go through a process of questioning everything in your life, and maybe, maybe you're someone who's really lucky and has grown up feeling like you can be autonomous and you can live in alignment with how you want to live and what makes you happy, and you know how you express yourself and all of that stuff. But for so many of us that hasn't been safe or accessible. It's not even been encouraged or acknowledged by people around us that that is an option.

27:09

We're often told that there's a very narrow, particular way to live, and that if we don't adhere to that, then somehow we're failing.

27:23

Okay. So I'm really hoping that if I just keep going, I'm going to end up at the right place.

27:32

Going back to the original question of what happens when you find out you're Autistic, I think if you weren't already in a process of questioning everything about your life, whether that's through becoming a parent, through engaging with queerness, engaging with capitalism and patriarchy, and what all of those things have meant for us, whatever it is if you're not already in that process, I feel like it is a very common catalyst to kind of tip you into questioning everything. Who are you?

28:12

Because often I see this a lot with people that I work with, they have been identified as Autistic, and they suddenly realize, and there's this whole grief process in this, that it's not just that they have to find this kind of perfect solution or this, you know, one day, they'll suddenly happen upon a cure for whatever they're struggling with is this realization that actually, no like you're you are neurologically different to some other people, and that the challenges that you experience are not going to go away by suddenly finding the correct medication or, you know, seeing the right therapist. It's really about recognizing there are fundamental differences in the ways that we and our nervous system function. And so what does it mean, then, to live a life that is more aligned with that? You know, sometimes people have ended up in jobs or in situations where their neurodivergence is really well accommodated and there are barely any changes that they need to make in order to feel like they're really living well. Other people realize that there's a huge amount of stuff that does not align with how best like how they best function with their energy levels, all of that kind of stuff. And so then there's a huge amount of work, potentially, if the person wants to do it, that can be done to try and kind of shift everything into being more in alignment. And I think it's really important to say that not everyone wants to or can do that work, like for all kinds of reasons. And so I think it's really important to be clear that, like, there's not a duty or an expectation to do it. But personally, I'm really glad that I have done it and continue to do it because I feel like my life is so much more aligned now with how I best function, and I'm super aware that that is a very privileged position to be in, because not everyone can access that for all kinds of reasons.

30:43

I think I'm actually on the viaduct, and I have no idea how, maybe I just go over the top There's a heron again! My gosh, this is so cool. I've never seen so many actually, that's not true. The only other times I've seen this many herons is when I've had equally intense experiences. That's funny, they always show up.

31:14

Yeah, there's there's so much I could say about what happens when you're Autistic because or when you find out you're Autistic, it can mean that you lose people. If you disclose to people, they can treat you differently. You can end up feeling like, you know, especially as an Autistic person, that's often something that we have a lot of wounding around you can end up feeling even more so, like you don't fit in because people around you don't understand.

31:41

But there also is hope or benefit in being able to connect with other Autistics and seeing how magical that can be. For a couple of years now, I've been running programs for late identified Autistic adults, for Thriving Autistic which is an amazing Autistic-run organization based in Ireland, and what's been so incredible about it is just seeing the importance and the magic when Autistic people meet each other. How incredible that is. When people turn up feeling like they don't know any other Autistics. It's really, really incredible doing that work and getting to meet so many amazing, late identified Autistics and hearing their stories and how meaningful it is for them to connect with people is just so cool.

32:38

And I'm also super aware that I'm really lucky and that I in basically since home educating my eldest, who's never been to school and is 12... Since home educating, I've met loads of neurodivergent people, and have really benefited developing real neurodivergent authentic connections with people, being able to understand what it's like for other people and see how challenging it can be as a family. It really has helped me to feel less alone, because I think particularly when you start doing things differently, for example, when you I don't know when you learn about gentle parenting or when you learn about home education, it can be really isolating if you're not surrounded by people who are engaged in those kinds of practices or communities already.

33:36

Another thing that I think has been really helpful to learn about being late identified Autistic and ADHD is the difference between knowing and learning lots and lots of theory. So it's very common for people to go on these kind of massive deep dives or down rabbit holes into learning as much as they can about the experience of Autistic folk or ADHD folk, and as helpful as that is, there's such a difference between learning the theory and how it shows up for other people and actually starting to identify how it shows up for us. That was a massive lesson for me. I was thinking, for example, that I don't have meltdowns, and then realizing that that's not the case I just have internal meltdowns, or realizing that Autistic people can often experience a high level of anxiety. And whilst kind of establishing a few years before that, that I was quite an anxious person, actually realizing the extent to which just my environment and my lived experience, the extent to which that, at times, creates huge amounts of anxiety, was such an eye opener, because I really maybe thought everyone felt like that, or I don't know.

34:56

I found this really steep path. I'm hoping it goes down to the viaduct.

35:01

That's that's a really big eye opener, actually figuring out, you know, how different things, different aspects of the Autistic and ADHD experience actually show up for us, rather than knowing about them theoretically. And I think I don't know for everyone, but I think for me, that just took a lot of time, and the more I was able to observe myself in those situations, the more I was able to kind of have an outside perspective of what I was experiencing, rather than being in the experience.

35:36

My body's starting to ache now. I feel like I need a long bath.

35:41

I think I definitely have a lot more to say about what happens when you find out you're Autistic, but maybe I'm running out of words now, yeah, I think I'll leave it there for now.