This is the transcript from my OCD Family Podcast: When living authentically isn’t safe. Listen to S1E30 Part IV here.
Nicole:
Whoa, welcome back to the OCD family podcast and I am just so excited to introduce our guest today Katie Munday, they are late diagnosed autistic person with OCD and ADHD. You can catch them over on Twitter are you on other social media as well Katie?
Katie:
Facebook, and I’m trying Instagram, but I don’t know what I’m doing [chuckles]. But I’m there.
Nicole:
I love it because frankly, I don’t know what I’m doing on Instagram either. But it’s like one of the popular things so it’s I don’t know, but I tick tock is probably my least knowledgeable one, but certainly they’re over on Twitter and they have a particular interest and expertise in gender divergence. So, thank you so much for being with us today. Katie,
Katie:
You’re most welcome. I’m happy to be here.
Nicole:
Yes. And I love that we’re having an opportunity to speak not only on intersection, but I think just talking through and have the gift of hearing your story. We’re going to be looking at intersection from not just you know, sometimes people think one thing two things with that are intersecting but there’s so many things that make you and so we’re looking at, well, that’s beautiful.
There’s also a lot of challenges that you can face in society, in mental health systems in disability systems. Certainly, it’s a challenge and that’s one of the things that we really want to address today. So, first things first, if you wouldn’t mind, it sounds like you didn’t get your autistic diagnosis until later in life. But I was just curious in terms of both with OCD and that you have a neurodivergent neuro type can you tell us a little bit about your journey and discovering you were dealing with OCD and neurodivergent diagnosis?
Katie:
Yeah, I suppose I started working with autistic and otherwise neurodivergent and disabled young people when I was about 23 or 24 and as working with these young people, I just thought “I do that. I completely and utterly understand what you mean when you say something completely and utterly outrageous, or what other people might see as quite peculiar.” And the more I got to know the young people I was working with, I just thought “Yeah, there’s definitely something here. This is interesting.”
And I’ve always felt an outsider looking in as if, as if I don’t have like, some massive bit of information that is completely and utterly bypassed me for some reason, or some element of language or something that just doesn’t quite click with me. So, I kind of thought about this for a couple of years. And then I got into formal diagnosis which where I live in the UK, it took me two and a half years as I got my diagnosis through the NHS. So, the waiting times for that varies across the UK but it’s never a short waiting period, and they are not brilliant at telling anxious, potentially autistic people what’s going on or what’s expected. What the wait time is going to be. Anything really like that. So, that was quite difficult.
So, then I got my diagnosis when I was 30. And what I didn’t realise at the time is that they can also diagnose you with other things whilst you’re in there. So, I came out thinking I will probably get an autism diagnosis and I actually came out with being autistic and OCD. So, like “two for one” right now.
Nicole:
[chuckles] “two for one” yeah.
Katie:
Yeah, “two for one”, why not? Yeah. And then the support system in the UK, probably very similar to the US is absolutely shocking. So, it’s taken me 20 you know, – however many years – to realise that I’m autistic, put a word to it, get a diagnosis, and then nothing. No support. Nothing afterwards to get involved with.
And I talk about this all the time with a friend of mine who’s also autistic and I don’t know if he’s got OCD, but we talk about mental health quite a lot because he’s – not schizophrenic – but he has psychosis and various other things going on with him. And we talked about the fact that there’s an autistic community. Like, if you want it there are autistic communities that you can get involved with. Some of them are face to face through charities and various other things. And there’s a lot online if you if you want to get involved with that. Obviously, that’s still not for everyone, right, but that the choice is at least there for quite a lot of people. Whereas mental health, although also a neurodivergence, the community doesn’t exist – or the spaces that I found myself in have been more triggering to me than if I weren’t in those spaces anyways.
So, I’ve been part of like, because I have generalised anxiety as well, and depression. And those spaces exists, but they’re – they’re called support groups – but I find for me that they make a lot of situations worse than better because its other people talking about what traumatises them. And like what you were saying before we actually started recording about the fact that a lot of people with mental health issues, especially if it’s like Complex PTSD, there’s usually something or a long list of things that have happened to them or around them that that gives us our mental health differences. Yeah. And because of that, spaces like that become quite triggering to me. Yeah, so I could start the day off quite well and then read something online, which can do outside of mental health spaces as well.
Nicole:
– Because the internet is going to internet it’s going to be consistently troll-y and triggering and all the things
Katie:
Yeah, but I find that although being autistic is not very much not sunshine and rainbows and unicorn farts. It’s there’s a community online that is neurodiversity affirming. Yes. Is like autistic isn’t bad and it isn’t good. Most of us have support needs that varies from person-to-person and day-to-day. Where is it? I find that I don’t I have not come across that within OCD circles if they exist. Yeah, I think that’s why when our mutual friend put me in contact with you, I was quite interested I was like, “Oh, this like, I don’t know, light at the end of the tunnel was something” Oh, well, we can talk about the fact that OCD is really hard to live with, but also people first and foremost. We need to be able to support each other in a way that isn’t potentially triggering to each other.
Nicole:
Yeah, it’s hard because like you said, we all are coming from different histories from different vantage points. And so sometimes we can be very unintentionally triggering. There are some assholes out there that are intentionally triggering. To be fair, but a lot of people I think aren’t intending that and so it does become very difficult to know when you’re going to run into that or not. Also, when we’re looking at the overlap of trauma and OCD both can be very triggering, maybe around even the same content or trigger for lack of a better word, and for different reasons and the trauma is going to take it here. OCD is going to take it there and being able to piece that out within ourselves. Let alone across the community can be really difficult.
And so certainly I hear what you’re saying where these spaces can be really triggering. And we can say we’re all in this together. But really, if I’m hearing you correctly, it’s like yeah, we’re all in this together, but I’m out here and I don’t – I just feel like I’m not connected to that. And so I think one of the big important pieces and hopefully we can kind of brainstorm about that today, amongst other things is like how can we do better if we say we’re better together then how can we be weak? Right? So that no one’s left out. And it is it is really, really hard.
One of the things I’ve been talking a lot about in this series, but also on the podcast at large, is that we all have OCD in common whether it’s because we’re supporting our loved one we have lived experience where researchers or we’re doing the work as a as a professional to try and help people find freedom through this difficult diagnosis. But it doesn’t feel like we’re all together at times and you’re really echoing that – like I am, I’m just like, floating out here on my own like you can find it and you have to – and that’s to say that you’re in a place where you have the energy to muster to find it. Because when we’re talking about whether being autistic or ADHD or depressed or anxious, all of those can affect how we engage or initiate tasks, or how we avoid or get dysregulated by it. And so, it’s not easy, even if it’s available to always be like “okay, so I’m gonna go fling myself out there”, especially coming off the heels of the pandemic and try to connect virtually in a way.
I mean, it’s hard. It’s hard. And so I really appreciate you putting words to that experience. I think that is really, really important. One of the things we’re going to be talking more about, like we’re gonna zoom in and do an episode on autism with one of my great colleagues who is autistic. I am a mom of autistic children. We’re very pro neurodiversity. And so, I love it because I’m surrounded by amazing people that have brains that think in different ways than mine. And together, we can create this tapestry of just beautiful meaning. And one of the things we’re going to be talking about in a couple of weeks here with my colleague, is how really, a lot of autistic people are feeling that anxiety because of the demands or the pressures to conform, to fit, to mask, to play by the neuro typical rules that society has set up and so already, OCD or not, just being who you are in your own body can feel like a struggle.
And so that I mean yes, an anxious autistic person, I would imagine. It would be very, very hard if you’re having to feel like you need to justify why you’re thinking what you’re thinking. If you even have the energy to not be like enough I don’t need to say shit to you people you know, like, it’s what I’m doing is what I’m saying that I don’t have to prove it like, but I don’t know about you, Katie, like I don’t know if you’ve ever gotten an argument with a partner or something where you’re like, “Hey, I am just I am trying to talk” and like you don’t want to have to be in a position where you’re defending yourself 1,000% of the time, but I think whether we’re dealing with mental health, or some of these other intersections, we are dealing with that need to defend why my thoughts and why my feelings matter.
And that’s really hard because we’re not even talking about mental illness. Right now, we’re talking about humanity. Having the right to feel and think about things doesn’t mean we’re always right about things, doesn’t mean we’re always wrong about things it means. We have thoughts. That’s okay. We have feelings, that’s okay. And we don’t need to have to justify it to get in the secret password here to be able to get some support. And so, I think that is one of the things that I’m just like, yes. How can we do this different? How can we make some improvements here, so I really appreciate that.
Also, in your amazing advocacy, you’re talking about being trans and I would imagine the evolution of understanding who you are in a gender way even like just trying to fit into a world trying to fit into yourself. Like can I ask you what that journey has been like?
Katie:
Oh, you’re like how much time we got? [chuckles]. Yeah, like I don’t have enough time to – that is funny because they’re all interconnected. Like they would be because they all reside in me. I find it funny because I – and I’ve heard this from lots of trans or non-binary autistic people – that it was once you get your head around your neurology, not necessarily that you’re in a happy place with it, that you’re on top of the world and you feel like you know what you’re doing or anything like that, but even just having a name to it. Being autistic. Being ADHD, you’re having learning disabilities, whatever it is. So, that gives you space to be more introspective.
So, after my autism diagnosis, my OCD diagnosis, there was “ah okay,” and then I looked around in my brain and I thought “oh, God, there’s all this other shit I’ve got. Oh, there it is. Yeah, well, there’s stuff I’ve been storing up over the years.” So, yeah, but I’ve looked at that as well, I suppose. And that was kind of, not sexuality – because I’ve been pretty open and aware of how my sexuality works – but definitely gender. And I think just because there’s so much more language around things, accessible language about being trans or non-binary or agender, or just gender divergent in general. Yeah, that you can almost try things on for size. You know, and I can’t actually remember your question now, so I’m hoping I’m actually answering it? [chuckles]
Nicole:
You are Katie. And you know, it makes me think because when we first got connected through our mutual friend – hello, mutual friend you know who you are! When we got connected one of the conversations we were getting into as well, in terms of the greater LGBTQIA+ community is well trans inclusive. That trans is also different. Then a lot of what’s happening in that LGBTQIA+ realm. And so well, there is certainly a need for advocacy for celebration for understanding for pride in yourself. And that goes for all of us. I mean, that hopefully we can get to that place where we’re able to embrace ourselves and go “Hey, this is me and I accept that” I mean, that’s powerful when we can get to that place.
And that’s a journey for a lot of people but sometimes the needs of the trans community get missed in the larger grouping of we’re just this was the community, here’s your month. Here’s your thing, like you know, this is when we’ll celebrate you, but you may not identify, sexually and face different microaggressions different struggles, different bases as a trans person. And so, it becomes challenging because it’s like, yeah, well, there’s some awareness being built. It’s also not necessarily understanding – so, it’s like having that support. I was just curious if you had some thoughts that you could share on that. Because while I’m glad that advocacy is improving there’s still a lot of biases, there’s still a lot of discrimination. There’s a lot of struggles that show up. And so, I was wondering if we could talk a little bit about that?
Katie:
Yeah, yeah, yeah, definitely. I think even even when you said “Oh, and you’ve got a month for that, and you’ve got a day for that and everything else” so you think the trans community – if there is one monolithic trans community which there isn’t – has like a Trans Awareness Week, and then we have a Trans Day of Visibility, just in case you weren’t aware that we exist. Then we have a Trans Day of Mourning. So as three trans holidays, if you will, on “we do exist, please don’t kill us.” You know, and for the greater kind of LGBTQIA+ community to have a Pride Month is gorgeous, but there are so many people who could be within that community that are completely and utterly gate kept by that. Black indigenous people of colour, absolutely, people considered “not trans enough” because we haven’t gone through HRT or we haven’t had surgeries, or we’ve had some surgeries, but not enough of the surgeries, whatever that might mean. And you know, that’s gatekeeping the usual people that are gatekept from other communities or society in general.
There’s a reason the letters are all kind of put together, but it doesn’t mean that we all get along with each other! White supremacy reigns supreme in LGBTQIA+ spaces, as does the patriarchy. Brilliant. So, there’s a certain hierarchy that – despite the fact that we, as queer people have gone against the normativity – that we’re still creating our own modes of normativity and gatekeeping each other from being queer.
And I see that with quite a lot of trans people within trans communities, but also within the wider kind of queer community as well. And that’s really rough going. That’s really, really rough going, especially when it’s people who call themselves feminists but absolutely are not, who are also lesbians, and who are saying that being trans men is basically stealing away all of our butch lesbians is basically what is being said there as opposed to just thinking “oh, yeah, I’m really happy for these people because they’re living their authentic lives.”
Nicole:
Right. Right. Yeah, intent is different than how it carries out. And as we’ve learned, we were talking before we started, you have a two-year-old and so in helping a toddler understand cause and effect and the impact of their choices we really can vibe with this promise that actions speak louder than words. And so, it’s not that words have no meaning but if your actions don’t back up your words, then where are we with that? And so it feels like Yeah, I mean, if we’re saying you’re embracing your authentic self and living your life, which is honestly within the OCD community, what we want to be able to do too, and we want to have value driven lives, where it’s not controlled by OCD, but it’s based on I’m going to do this with my values, even though I might feel distressed or even though I may have to do some work around some inferences of doubt that lead me spiralling into my OCD. And so, on one hand, it’s an important message, but on the other hand, actions speak louder than words.
So, what you’re speaking about, I think we can all relate within different communities. Certainly, like for people of colour, just having the experience of being in a minority group, you’re gonna have some common factors that are relatable to other people in other minority groups but that doesn’t mean your struggles are the same, let alone within your own community. And certainly you can have within cultures too based on how westernised you are based on skin colour (how dark or light you are), based on accent, based on facial features. And how traditional someone may present with different features. Like there can be a lot of that even within the communities.
But I think that’s a really good point because I don’t know that people outside the LGBTQIA+ community, sometimes understand that still, just like outside the community, we still got problems. We get in fights with each other, we deal with crap, right? Like, except there’s still some tensions that can rise even within that community. But sometimes the messaging is like, oh, but you know what, like, we’re just gonna do you over here and, you know, good, good for you. And it’s like no, actually, we still need to be human, supporting humans, in or out of the community, regardless of neuro type, skin colour, gender, sexuality, sexual orientation, religion. I mean, there’s just there.
There are so many aspects to that. So I think that’s a really important point for people to understand. And it’s not to say that’s the way it is across the board. It’s really… OCD loves some nice black and white thinking where we can just make some broad statements, but it’s not to say people aren’t getting along in the community, but there’s still a tension and you’re, you’re sharing really hit me on “hey, we’re still here, please don’t kill us.” Like that is not the same experience that every person has waking up in the morning, you know, and it’s important to understand, like, how did we get here and how can we get to the next point in helping people be able to wake up with a sense of safety, that they don’t have to hide who they are, just to be accepted, just to belong?
And so that’s really hard because I think there’s a lot of misinformation a lot of confusion across all these different areas where we have intersectionality and that’s why it’s important to have the conversation. I by no means have all the answers and I’m gonna screw up and put my foot in my mouth sometimes metaphorically, because I am not flexible at all ( I can barely touch my toes!) but I’m not always gonna say it right. But I’ve got to take a risk, saying it wrong and having somebody come back and say “actually, let’s learn together about this.” So that we can grow, so that we can have a sense of belonging.
We don’t all have to agree with each other. We don’t have to have the same politics. We don’t have to have the same skin colour any of that. To be able to be respectful to one another and how people know and like your value because you’re you, and you’re you because of all these intersection points and more.
Katie:
I think it was interesting what you were saying about words and assigning values and meanings to words, because I find that for me, the word ‘ally’ in whatever people are suggesting they’re an ally of, is very much a verb. It is very much not something you can put on yourself anyways and that needs to be something that’s chosen by the community by which you think you are an ally. But also, it’s done by actions and it’s not just something you can put on yourself and oh, you know, “we put a rainbow flag up on Pride Month in our office.” I mean, what do you do? Right?
And I find that that is the same with mental health and definitely with OCD. People want to support you until things go really, really wrong. And I actually find that with being autistic and ADHD as well. They don’t mind the quirky or the funny or slightly (I say weird in a nice way because I always use the word weird in a nice way) weird behaviours or unique ways of being they don’t mind that, until something goes wrong. Then the ideas of being a burden of having to hide yourself away in your own safe spaces are a big reason why a lot of OCD folk also have Agra phobia or you know feel like they can’t leave their homes because it’s not just the fear of say contamination OCD, then obviously that’s a fear, but then if you add further marginalisation on top of that, on what people expect people to look like when they’re going about their business in the world and you don’t fit into that. Yeah, then that becomes like a real issue of safety. Especially if you’re a person of colour or you’re visibly disabled or you’re visibly trans or all these other things it becomes really dangerous to be yourself outside your own house.
So, I think the word ‘ally’ is all very well and good and support is all very well and good but I think that if you’re gonna take the rough with the smooth, really, yeah. And actions speak louder than words – you’ve got to do the things that you’re saying are important. You’ve got to be the change. Not talk about the change, participate in that. And so, I think that is really, really important.
Nicole:
And OCD is certainly a very isolating disorder. It imprisons you in these different spaces and then some of these intersections are also very isolating. And not, not in necessarily the same ways but in in familiar ways to OCD in terms of that fear of what’s possible and what could happen. And it’s, you know, I don’t know if much about ICBT inference based CBT. It seemed a more popularised treatment outside of the US, but it’s really gaining traction here in the US in addition to exposure and response prevention, which is typically touted as a gold standard, at least here in the US. And something that I really appreciate about ICBT is it talks about how absorbing the nature of OCD, the actual act of shouting and how the absorbing that is, but also part of the practice in ICBT is sorting out what is relevant, what’s relevant evidence and my common sense here, and what’s reality and what’s not. And if we’re looking at some of the risks that different communities are facing, it’s relevant to go well, I’m a little afraid about that. Now OCD can take that “Oh, yeah, I see. You’re a little afraid” and up it.
But it’s important and it’s really important to validate like, “hey, I’m not just coming up with it here. Like this has happened. And it’s happened, and I’m grieving.” And so, holding that and trying to keep that here in the present without OCD running amok with it. I mean, that’s really, really challenging and so, yeah, I mean, I appreciate the validating aspects of that because you’re right, there are different threats of harm and different difficulties, and certainly with people of colour, certain religious, especially in certain parts of the world like certain religious affiliations. Can have you persecuted right away. And we don’t always think about religion paired in that same grouping with people of colour with sexuality and all of that because it’s like, are you going to die if you go out? Well, depending on where you are in the world you live it’s not always the same thing. But also honouring like if I’m living to my authentic self and I subscribe to a certain religion if I am non-binary, if I’m a person of colour, or if I’m indigenous, and I, you know, how do I get to just live and be my authentic self without having to constantly be in protective mode, and then know where that line ends? For going into obsessional doubt, or the OCD running amok with a spiral.
So, it can be a lot and to that point with OCD, so when you got that sounds like especially with mental health, you said because with autism, you can go okay, yeah, there’s an artistic community. If I have the energy to get in, do the research and find this and putting myself out there which is hard for anybody. Anyway, but in addition to that, with OCD, did you also feel like “okay, got the diagnosis, now what?” Like there wasn’t a lot of support or linkage from NHS to be able to get treatment or did you feel like you were able to get paired with therapy? How did that work for you?
Katie:
I have not had any sport with OCD whatsoever, or the three years I’ve been diagnosed now, and by the at least 15 or 20 years I’ve actually lived with it. The only thing that they do for the NHS is CBT which from personal experience and from certain amount of research just doesn’t really work with neurodivergent minds. Like, it doesn’t fit with an autistic. It’s very much based on neuro-normativity whichever that is because that’s all these people can come up with. And that was something I was in that was to do with my progression kind of timeline quite a while before that, because I have been through this process, it’s a one shot thing, right? If you’ve done that now you’ve done your nine months of CBT or whatever it was, and you’re not gonna be able to do that again. Okay, so what else is there? Well, we can do medication.
Okay, and that’s not a bash on medication by the way, as a person who takes quite a few medications that’s not bash on that and also people don’t get the choice. Like so we can offer you this medication. “Okay, what else could you offer me?” “No, that’s, you know, that’s it. That’s it.” Yeah. So yeah, where do people land with that?
And then trawling through information to find trans affirming stuff is difficult, trawling through stuff to find autistic affirming stuff is really difficult, but it exists if you have the energy if you have the resources if you know were to look it exists. Not that I think that OCD should be affirmed so much. but it would be nice if it wasn’t all considered doom and gloom, right? The anxieties can get in the way, generalised anxiety is the “doom and gloom” disorder like literally doom and gloom.
Yeah. It would be nice if mental health services – because people throw around the word neurodivergence all the time and yet a lot of people get really funny about the fact that mental health exists within that umbrella, which it most certainly does. And it’s weird how some people will quite happily have the – not label, but I’ll use the word label but it’s not necessarily the word I’m going for – but we’ll say the ‘label’ of being autistic. I don’t mind that but I don’t know if it’s because I think that people seek that neurodivergence. And neurodiversity and neuro affirming stuff is always positive, right? I think there’s a kind of misconception about that. Whereas actually, affirmation is just the fact that you are there, you are valid, we see you.
Now what can we do with that knowledge? I still like people either don’t think that that happens with mental health, which I’ve got to say I agree with or that they feel like mental health differences shouldn’t be allowed to be an identity. I think that’s because there’s this idea that mental health differences definitely follow them medical model of disability and so the mental health is your problem. It is something within you that – certainly as person with OCD – is shameful, is wrong, is potentially violent. Potentially there’s that and then that mixes with the stigma of – I was thinking of Monica from friends, who was very particular about how she wanted things, and was very much I don’t know if she was ever spoken about being OCD, but it was very much in that area or what people believe OCD to be – That’s true. That’s what people’s perception is.
It’s really hard to find some kind of inner peace, if that’s obtainable anyways, because people don’t talk about their experiences. So, I’ve been married to my husband now, how long we’ve been together 10 years? Coming up 10 years. My goodness, when I got my autism diagnosis, My poor husband had “autism this, autistic this thing, this thing, that thing, this person, I read that..” I also did my postgraduate on being trans and non-binary and autistic as well. So yeah, he’s had a lot over the last four or five years of me going on about autistic experiences but there are things about OCD that I’m only just now telling him about, which – and he’s the person who knows me better than anyone I knew I can share anything with – but I think yeah, I feel like there is some concern because a lot of my OCD is about home.
So, I think – and then if you mix that with past suicide ideation for me, bringing up things like that to my husband, or let alone anybody else might set off alarm bells in them which don’t necessarily need to be set off. So, there’s a certain thing that I – this is going to be quite graphics, if you don’t want to listen to it, give me a minute cuz it’s going to be a bit graphic – I have always had issues with cheese graters, because the compulsion to run that up and down my arms is really, really strong and then add in kind of a weird sensory thing that I have going on with being autistic, is that I can then not feel that sensation on my arm of course, but I start feeling strange sensations in my arms. So as I’m thinking it as the object is there, my arms feel scratched, it’s a whole thing. So, my husband has been thinking they don’t want me cleaning up the sharp knives – we’ve got steak knives, things like that. It just stuff that I won’t wash up even – actually just even the thought of a cheese grater has made my home feel funny.
But when you say that out loud to people who aren’t OCD or have an experience of OCD you sound completely and utterly off this planet. Like what are you talking about? Why would you think that? Like, oh, maybe you should just you know just go get on with it. Or maybe should just stopped thinking about that. Well, yeah, okay it’s actually really distressing to me. Yeah, I’d prefer to be able to do the washing up without thinking about hurting myself. So yeah, I guess I’ll just give that up. [sarcasm]
Nicole:
Yeah. Yeah. So easy, would be resolved already. Right. Yeah. No one would have OCD because we just wouldn’t think about the state. Katie, everybody lovely. Let me tell you, you are with your people here because we all hear cheese grater and I was like, “Okay, bring it on” and I don’t even -and I’m not trying to minimise it – I don’t even think of it as graphic. It is so relatable to people listening where they’re like, “I hear you. And they are just like me. I get it. Like yeah, yeah.” You’re not alone in that. But you’re right the fear the shame, the am I going to be locked up, are people gonna think I’m not safe to be around my child? I could do this to myself, like all of that piles on and then you add some of these other intersections and you go “well, will I be given the benefit of the doubt? Will I be?”
Katie:
So yeah, I mean, it’s, it’s really, really hard because with COVID-19 you know, autistic people were put on a rather lovely list of DNR. Do Not Resuscitate.
Nicole:
Wow. Like if you have it?
Katie:
Yeah, if you have complications with COVID. And that was in England, that was in the UK. So, when you can think that how the government and society values and treats autistic people. “Values” [chuckles in derision] yeah, and dehumanises you and says, “actually if you died, I mean, like, who really cares? So, you won’t miss that much. I mean, you don’t add anything to society or whatever.”
Then you add, do I have someone to talk to you about the fact that I’m having these thoughts and then what they go to do with them, then you add the fact that autistic and disabled people are more likely to have their children taken off them from social services. Then it all just becomes this great big…. Yeah. And I work with kids as well, you know, so would people think that I’m a danger to children, which I absolutely am not.
Nicole:
The thought of it is it’s so distressing that even the thought of it is so hard, but you’re right there is a lack of understanding and because people are thinking of Monica from friends has that’s OCD like, “oh, don’t get crumbs on the bed.”
There is an ad campaign going on right now. So and I want to say (don’t quote me on it) – maybe I should look it up before we get up but No CD, which is an app and it provides therapy here in the US but also is international, has been doing an amazing campaign lately about some of that misinformation, because they will start off the ad with people think you’re OCD and so I colour coordinate my kids onesies or something to that effect, and they’re like “when I actually am afraid I might snap their neck. I might hurt them.” That’s what it was. Yes. And that powerful punch when you put that juxtaposition, but it’s also extremely normalising for people that have ever had those thoughts.
And one of the things we talk a lot here on the podcast and what we talk about in the treatment community of OCD is: are these thoughts ego syntonic, in sync (I always think of the band!)? So, are they insane? Meaning I like it, it’s in sync with my values. And what I want, or is it ego? dystonic? Is it as distant as hell from what I would ever want to do? And that’s why it’s so disturbing and so disruptive.
If you don’t like crumbs on the bed, fair, you don’t have to like crumbs on the bed. That’s fair. That’s different than thinking crumbs are on the bed and someone I love might get hurt. Like, there doesn’t have to be a logical connection but sometimes it’s very logical connection when it comes to OCD. And so, it’s like, in some ways, I know that crumbs aren’t gonna kill somebody and yet what if it does and I was negligent? Like I didn’t follow up on?
So, the stakes are high, and the value is so high. The consequence of if this thing that possibly could happen or did happen, or might have happened and I just don’t remember it happening, it’s so high. Not only will people maybe not understand but like you’re saying like if I’m already not being appreciated just for having the brain I have, which is not that different than having people go, Hey, you have this eye colour, you have no meaning. There’s no relationship on your value. And yet it’s such a core part of who you are, that it feels so condescending, it feels so dismissive. “Dehumanising” is the word that you use and I agree with that, and so that’s a real problem. But yeah, I mean, if it’s ego syntonic that you want to hurt children. I think we probably shouldn’t be concerned right? Like, hey, you know what I’m gonna do I’m gonna go bowling for children who’s wait till the school bell rings and be able to take the car for a ride. No, this is the opposite. I am so terrified. I won’t even go near a school or whatever the thing is, right? Because it’s so scary. I might not even leave my house. Like you said, you can look like agoraphobia or anything else like it’s there’s a lot of layers to it.
Katie:
I think that’s where the extra layer of difficulty comes with being autistic. Especially if you’re, I don’t know if especially late diagnosed – but I can only see it from that perspective, because that’s where I’m from, but sure, because you are consistently gaslit “it’s not too loud in here.” “It’s not too cold.” “You had that dinner yesterday. Why don’t you eat that now?” “Oh, why can’t you be like your brother, he always does X Y, Zed?” And all of these things and they pile up and they pile up. And it makes you have to re-evaluate everything you think. About everything you say, everything you do. Then if you had something that a lot of autistic people struggle with, I certainly do, alexithymia to that mix, where it’s a difficulty in understanding our emotions, being able to label our emotions, being able to communicate that to other people. So, you’re being told that everything you think, and feel is incorrect. Alexithymia is telling you what the hell is going on in your brain anyways. Then you add in OCD, so being able to pick apart what is a value of yours and what is completely against your values become so much more difficult because you’ve been told for however many years that you’re wrong, you’re incorrect. “Why are you saying that? Why are you doing this? Why can’t you just be quiet? Why can’t you just do this?”
Then you’ve got your emotions and you have no idea what’s going on with that. Then add in compulsions, intrusive thoughts, kind of perhaps paranoia that can come with OCD, and it becomes a shitshow. Like it’s so hard to unpick from each other. And I think what you were saying about the stakes being high well, with OCD, the stakes can be high all of the time anyway. And being autistic the stakes can be high all the time. And being trans the stakes can be high all the time. And it’s exhausting. It is so really, really exhausting.
Nicole:
Yeah, yeah, really great points and there’s only so much our nervous system can take. And yeah, life goes on, and your kids gonna wake up and you’re gonna do the things and get out of bed and it’s so hard. So, I think it really is a great point and it circles back to what we were talking about before. An autistic anxious adult. Yeah, I mean, at this point, what kind of messaging have you been given that has really delegitimize the way you’re processing the world? And it’s almost – I’ve equated in trying to help people understand sometimes and I could be getting this wrong – but one thing that I find helpful I tend to think in analogies, is like here in the ‘States, if we’re growing up and the primary language is English, and you only speak Spanish, then you’re gonna be most comfortable speaking in Spanish, and well you can learn and adapt to English, it’s never going to be your first language. And you’re always going to be filtering information in and having to run it through these filters to come back out to be able to participate to engage because English is what we speak here. And similarly, folks, we look at there’s a range of different things that can impact because autism is so vast, just like neurotypical brains are so vast, no one has the same brain. And we tend to go well, but it’s a spectrum. I’m like, it’s all a spectrum people like just whatever brain you have no brain is going to be exactly like the next brain, but really like to stick to the spectrum talk, right?
So, if we think like, adapting is hard and change is hard, and you should be reacting like this, but you’re literally having to work double-time to understand it through your brain. That’s a lot and in terms of – it’s not a bad thing to be bilingual – but a lot of times people have some choice in the matter to I’m going to choose to go into this other language for autistic folks. It’s a huge challenge and what’s I don’t know – and this is anecdotal, so I could be wrong – but I feel like at this point, the neurotypical NT world is less typical then neurodivergent ways of processing which obviously can be multiple neurodivergence. It could be a singular neuro divergence, but it’s like at this point, the NT’s think they’re cute. They’re like, “hey, this is the way the world works and it’s like oh, no, but yeah, yeah.
Katie:
So, Nick Walker writes about a lot of autistic experiences and stuff and she was one of the few people who came up with the idea of neuroqueer theory. And her views and she writes this so well, is about the fact that neurotypicality doesn’t exist. There are just people and circumstances that make it easy for people to be able to be compliant. And that’s what neuro-normativity is. It’s not, oh, well, John’s neurotypical or whatever. It’s that Jordan has an easier time of performing neuro-normativity. Right. And I think that’s a brilliant way of thinking about it. And I think as the world becomes just a complete dumpster fire with everything that’s going on, at the moment, it feels the last four or five years, we’ve just been epically terrible.
It’s been a rough time with COVID with there’s been a lot of different things. And like rising bigotry rising gun crime transphobia like it’s, I’m thinking mostly in the US the UK, but I have a feeling that it’s probably more global than that.
Nicole:
Added on to things that are going on in different countries anyways, of course, civil wars and all sorts earthquakes, all sorts of –
Katie:
Yeah, yeah, yeah, absolutely. Yeah. I just think because the world has got to a point where some of us are hyper aware of what’s going on, and yet are powerless to change things, colonialization all sorts of different things. I feel like in the UK, we had lock downs for COVID-19 on and off for about two years. Yeah. And a lot of people will still go into work, but quite a few people were home or were shielding. So, I was home for quite a while because I worked with vulnerable young people. So, obviously they weren’t going anywhere and I think it gives people the chance to be introspective and just think about where they see themselves in the world where they see the world anyways.
And I think with that kind of opportunity, despite the awful, awful reason that we had that opportunity, has given people a lot of chance to really think about who they are and what they want from life. And, you know, in the UK, we’ve certainly seen a rise in autism diagnosis and ADHD diagnosis, late diagnosis of all kinds of learning disability, whether that’s specified or not. Fibromyalgia has also been on the rise, but you know, more people are, they’re aware of it. And myalgic encephalomyelitis, so chronic fatigue syndrome, all sorts of different things like that, because people have been able to sit with themselves in their embodiment. There they’ve had the opportunity now to think “yeah, no, there’s something going on here that I need to address.” So, I think actually the amount of people who can perform neuro-normativity is just shrinking and shrinking and shrinking and shrinking. So, it almost makes divergence perhaps not quite the right word to write.
Nicole:
Maybe it’s not just normativity. This is just the range. So, this is just, yeah, it’s interesting because in some ways, it’s like why do we have to single – it feels isolating – to single out in groups in other ways. It feels really edifying to go “oh, now I understand why I think the way I’m thinking” and it’s nice to have a sense of understanding even better when we can feel a sense of community around that. But we don’t want to be marginalised. We don’t want to be at risk for harm. We don’t want to encounter violence because we fit in a grouping part of who we are, but we’re so many different things, you know, and so it’s like, well, it can be edifying. It also gets weaponized sometimes in terms of, “okay, okay, so you’re here, well, this is what one person from this group once did – oh my gosh, don’t get us started on the neurotypicals and what they’ve done in history because shit, like we got, we could start a whole campaign there!” That’s not the point. The point isn’t to turn against each other, but it feels so polarised, and I have a suspicion – and I could be wrong – that we are more connected and more alike than we are different. But some of that messaging gets reinforced too and it is based experiences happen.
So, I’m not just saying this is out of thin air that we’re drawing some of these conclusions violence is happening, which is it’s really important whether it’s even just anxiety, let alone understanding OCD or being able to say autistic like we’re very proud of our autistic family and they’re very proud of like, yeah, when I asked my son, I have two autistic sons, my older son, what do you think your best qualities is he says my autistic brain because I remember things that my friends can’t and all this stuff and it’s true. He’s got a crazy memory. So, watch what you say around that one! He’ll be like “oh, remember back in 2018 When you said this?” and I’m like “what?” But I’ve learned to be like, Yeah, I probably did say that, if you remember that because you remember everything. But yeah, I mean, if I say to him say something that you love. And he could just say, “my Autistic brain” he could just say “brain” but he thinks of it as my autistic brain because he does have an autistic brain and it allows him to process the world and not the same way everybody else does.
And we also talk about that in terms of self-advocacy, and how to work within the systems were a part of sometimes people aren’t going to understand how our brain is processing. And so we might have to do this not because we’re not good enough as who we are, but understanding this system, it doesn’t always flex to include and understand more than one right or one wrong answer. And so when we think about that with OCD as well, that’s like, oh, yeah, there’s one right answer and you haven’t done it yet. You keep doing, you got to keep trying. Then it’s like, like it can really run amok. And so it is, it’s certainly challenging. And it’s not just because you’re Autistic doesn’t mean you’re all good. It doesn’t mean you’re all bad. It just means this is the way you process the world. Right? Like I have brown eyes, sometimes they’re green, they tend to change back and forth. Does that mean anything about how good or bad I am as a person? No. It’s just part of how my body works, how I function, how I process how things happen, you know, and I find that language really, really matters because well, we can feel like a sense of belonging and that’s what I think essentially when we’re like, okay, apples or oranges, it’s all fruit, right?
But if you’re like, “but I’m an apple” and it’s nice to see some other apples and no, I’m not one apple with all oranges. Yes, we’re all fruit but it’s that language, that grouping, that sense of identity can and does matter. And sometimes we get over the top in terms of oh, we need to really mix this up because we don’t want to seem like we’re picking one side over the other and it’s like what good it’s important to not excuse but we can also have a sense of belonging with community that relates to some of our struggles but that doesn’t mean our struggles are going to be the same. But yeah, and so it gets tricky then for people to understand because, you know, you want to be a group or you don’t want to be a group and I’m like if we’re kind of stuck on why a group it this way or why a group it that way, we’re kind of missing the picture. What’s missing is whether someone is labelled or not whether they’re considered as part of a community whether they identify that way.
Katie:
It doesn’t matter if you’re labelled because the oppression is still coming their way. You know, it doesn’t. So, autistic people tend to experience higher rates of abusive relationships, drug and alcohol use and substance use. And that doesn’t change whether we know we’re autistic or not. Bullying doesn’t change whether someone knows we’re autistic or not, because people are just going to take the piss out of you anyways, and I had this way before I was aware of what trans even meant, let alone that that was who I was. There was no bullying about the way I express myself, my body, my stuff like that. So, people don’t need labels to be able to ostracise you they’re going to do that shit anyway.
Nicole:
They’re going to judge you and sometimes they might go “oh, I think you’re fill in the blank” and judge you and maybe you are fill in the blank but that doesn’t mean you deserve that. And sometimes you’re like, I’m not even fill in the blank. You just rush to a decision and you’re treating me like more shit because of it. Not okay. Not okay. Right? Like, it’s like, either way people are missing the other person. They’re not connecting with the person. Are they like me? Are they not? People are threatened by these things. And if we could realise like, yeah, there’s a lot of shit that’s going on that we don’t understand. We’re in that together. We could be stronger together if we could unify around that rather than pointing fingers. hurling insults, microaggressions, violence, because we don’t understand the difference.
Katie:
I think that circles back to something you said right at the beginning of our talk which was the fact that we’re going to get things wrong sometimes. I definitely feel that the trans aspect of my identity. I think people are so worried about this cancel culture and the woke brigade or whatever other nonsense they call it. They are so worried about getting it wrong, or actually more appropriately, they’re worried about what they perceive to be putting their privilege on the line.
Nicole:
Right. The consequence of not being on the right side of the argument could lead to loss of my pay.
Katie:
Yeah, so they would prefer to forget that autistic people exist. Forget that people with OCD and other mental health conditions exist. Yeah, like with trans there’s like a whole “pronouns oh, how horrifying.” People have been using pronouns like I, We, they, it, since the dawn of time now and they’re like “we can’t use pronouns anymore.” Okay, you’ve used about eight different pronouns in that sentence, so, you’ve just told me that for?
So, yeah, I think there’s this real need, I think people need to be able to be wrong, but also for spaces to allow people to be wrong, because I see this on autistic spaces all the time online and there are groups that I’ve left because I cannot deal with the dogpiling. So, when I got my diagnosis, they do levels in the UK – I don’t know if they do in that in the US?
Nicole:
They do and they don’t. So, it depends on where you go because with my kiddos I was like “I’m curious at the level?” and they’re like “levels fluctuate, they’re not fixed things.” And we believe in levels because then people tend to isolate like the capabilities of someone to their level, but then you go somewhere else and they’re like, oh, it’s level two, level one. I was like, okay, but I’d like to think I mean, the fact that I’ve experienced that with even my own son’s diagnoses and give levels because they’re like, why? What’s the level? What’s even high functioning and low functioning which people don’t get it? They’re like, Oh, but they’re high functioning. Oh, you think they’re good enough because they’re capable of raising their hand or getting through the school day. Like, you know, making money? What does that mean that they’re not in diapers at 16? So, they’re high functioning like, are we limiting their possibility and what about people who are in diapers at 16? Yeah, they still have worth. That’s something I could get on a whole different diatribe about that. But you were saying?
Katie:
Yeah, I said about in this online autistic group, and I said about “I’ve got my diagnosis today. Level one” and the joke was all “I’ve levelled up” right? So, that was all my post in a fully autistic group online, and people went absolutely batshit that I had even dared to talk about levels or functioning labels. “We don’t use that in this group. And we don’t do that in this group!” But I just thought, well, first of all, you don’t know where I’m coming from. Right? Like, they don’t know the background of where I’m coming from, also when someone gets diagnosis as being autistic for me, that’s like, “congrats, welcome. Hello. Welcome to the group. Like what do you need? What can we do what’s happening?” Not “well, you might be part of our group, but you’re doing it all wrong.” Yeah. No, thanks.
And we have a go at what people call ‘neurotypical’ but I like to call neuronormative. We have a go at people doing that to us all the time, but we’re allowed to do that to each other!? And then all of this infighting just – it doesn’t get us anywhere because then you can’t have a conversation. Yeah, not the point. You have to watch what you say I already do that in everyday life anyway. Not in autistic spaces.
So, when people come on to my page, and they might use “Autistic Spectrum Disorder”, or even every so often “Asperger’s” and stuff like that, I will gently educate people, but I have no idea where you’re coming from, what your knowledge is, what your sensitivities are, whatever. So, for me to go, “oh my goodness, I can’t believe that you’re using this language and it’s disgusting for the following reasons” is really, for me, I think another very white-centred English speaking most definitely Eurocentric idea of how we should be using language to talk about our own personal experiences, even though the autistic communities also like to talk about nothing about us without us.
Right, but as long as you’re using the right language, or as long as you’re using mouth words, or as long as you’re – and again like I was saying about queer community – there becomes a hierarchy within, which when we already don’t fit into neuro-normative society we then create the same bullshit in our community, and it makes no sense. We could we, you know, we started from scratch we could make our community within the realms of like actual reality, into anything. We could have any rules or no rules and we choose to have the exact same stuff that is depressing us outside of our communities. Why, why would we choose to?
Nicole:
Yeah, I think, correct me if I’m wrong, but kind of what I am hearing and also I feel this too is there’s a little bit of hypocrisy in the sense of, we don’t want other people treating us like this, but we do treat other people even within our own group – and this we don’t even have to necessarily take any particular community we can take the family. Oh, really Marriage and Family Therapists! It’s all it was. Even if we were like not fazed by these differences at all but we all just came from a family we would have these difficulties because it’s like you shouldn’t say this about me but the things I said to my mom! Or the things we don’t say and how we communicate or don’t really creates more distance and barriers within us. So it’s really challenging, but it’s why one of the conclusions I’ve been coming to time and again, and this is a great point because this is the OCD family community and so we’re a community of family, of support, even if we have lived experience is going how can we have some conversations? I’m not asking if you agree or disagree with use of pronouns, I’m saying can you respect me and see me? I’m not trying to diminish because it might be like, but this really matters me, okay, that’s fine, that it really matters to you, and you really matter to me. How can we communicate?
We may not agree on everything, and it might hurt us where we don’t agree but also when we’re hurt and we shut down and we just draw better lines, and you’re either discussing filth on this side, or you’re right over here with me. Like we’re not achieving any progress at that because we can’t have a conversation. We’re shutting that down and now we’re not having a conversation, and you’re right language gives us a lot of contexts. Maybe we have built a lot of pride and done a lot of work and really struggled to get to the point where I can say this, I can say ‘weird’ and it’s a term of endearment. We don’t have to explain ‘I’m gonna say weird, and I don’t mean it in a bad way’ but it’s like we feel like we have to preface it because we anticipate people. Being an authority you get to pick your words and it’s like, again, if we are getting stuck on the words, and one language matters. If we’re getting just stuck on the words, then we’re missing each other. And so, we need to be able to do that.
I know that we’re close to time. I have a couple of little notes I scribbled down when you were talking earlier, and I would be remiss if I tried to highlight them. So, you were talking about earlier with CBT and the formulation or the functionality of CBT really being for neuro normative folks, neurotypical folks however you want to put that and how that really doesn’t consider the autistic brain. And I think that it is really important when we think about any kind of treatment, whether a mental health treatment or just treatment from one human being to another right just how we treat each other, that we can accept that. Just because I have thoughts in my brain doesn’t mean those are going to be the thoughts in your brain. It’s part of the beauty of us… I mean, if the whole world was full of just me and my brain, we tell you, it’s not all butterflies and rainbows and we wouldn’t get a lot achieved because we will be coming up with all the same ideas, we would be missing the point. And so, part of what makes us better together is that not only do we have commonalities, but we have differences that can help enrich growth and expand the way we think about things and stuff.
So, CBT certainly can feel like a one-size-fits-all but I think it was Dr. Eric storage and I were doing a training for OCD. He made this point during the connection just about therapists it wasn’t about CBT per se, but I think it applies here in this analogy as well. He said, you know “some people were like I’ve tried that before and it didn’t consider me it didn’t help me. It wasn’t for me. It didn’t work for me. It didn’t even appreciate like how I process the world. Why would I do that again?” And I think his response when again, it was to therapy in the example, but he said “well, it’s like dating right? Like you might date somebody who’s a real asshole (I’m paraphrasing I don’t remember he said asshole but I’m saying asshole) but there may have been a real asshole. And we might ‘go ooh, dating sucks’ like and dating has so much uncertainty. OCD hates uncertainty. So, generally dating is difficult anyway, and add on anxiety or OCD or depression. But not all relationships are going to be great.”
But I don’t think if someone is like, especially when it comes to OCD, that’s highly individualised, the things I struggle with in my OCD are going to be different than the things you struggle with are going to be different than the next person. We’re like only family, the cheese grater community and Katie, right. And so, in terms of CBT I think if you don’t have somebody that is affirming an understanding of the uniqueness and it shouldn’t even be dependent on if you are autistic or not. It’s like OCD is individualised no matter what, but also, how you mean the intersection points that affect your realities that keep your stress on high alert, that reinforce some of that distressing feeling that you have and why you feel like there’s going to be such big consequences if you dare speak out about it. Like, if you’re with the right person, be it a treatment team where treatment providers – similar to if you’re dating if you’re with the right person, then it’s right. You might have kissed some frogs along the way – that wasn’t the right frog but CBT what I will say is CBT especially when we come to Exposure and Response Prevention and inference based CBT absolutely somebody who actually knows what they’re doing within OCD treatment, it’s worth a shot and you might go through a bad relationship and you go “oh I don’t want to date again, that was so bad. Okay, but I’m also still feeling so lonely and I’m feeling this is hard and I don’t want to be isolated. I don’t want to be shamed but what if this is part of me and going through that?”
Maybe we could try dating again and then if you go out and you say I’m meeting with a therapist, and I really don’t think they’re even hearing me a little on appreciating all the factors that make this so hard and so vulnerable and so scary and sometimes unsafe. Well, then that was not the right person for you. And so, it’s not to say because OCD does love – I know I’ve gotten caught up in it before – it loves to go “okay, this is either all bad or this is all good. This is like not gonna ever help or this will help.” but then just question it. Yes. I mean, autistic or not, it’s like, yeah, you get burned, you’ve learned, right. CBT is kind of about that in a lot of ways. You’ll learn a response from this, right.
So, it’s like, yeah, I mean, understandably, there’s going to be reservations, but I just wanted to say I think and there are for ERP, if you go to iocdf.org, there are ERP treatment providers, certainly in the UK and all around the world, but also if you go to icbt.online, which is also an evidence based practices, research and numbers to show the effect for a myriad of people, whether you’re autistic, you have ADHD, maybe sensory processing disorder, whether you’re trans, straight, gay, no matter what gender, age, gender, it doesn’t limit you from that hope and it may feel very lonely, and I absolutely believe it is lonely right now but I just wanted to chuck that little nugget of help out there because I think, Katie, even if you had a shared experience, and maybe NHS won’t be able to link you with it, but I mean, there’s a community for OCD and it’s growing, and it’s going to grow even more because of you, because we were able to have this conversation and the advocacy that you continue to do and what you’re doing with young people, and how you’re investing in people. We won’t always see the ripple effects here. Now, we might just feel like I’m treading water and barely breathing but I have hope. I have hope for you. I have hope for me. I have hope for our world that as hard as it is. We are Better Together. And with treatment, the weight, the heaviness of all that distress will dissipate, it can change the quality of life when you go “I can breathe, I can finally breathe” right from all this distress.
So, I just wanted to put that plug out there. Really, really appreciate you coming on and thank you so much for sharing, especially when we think about some of the harm themes and suicidal ideation. It’s hard. It’s so vulnerable. And again, your willingness to share your experience is going to help people go “I’m not alone. Holy cow. It’s not just me.” So, thank you so much. I really appreciate the gift of you giving your story and whether you know it or not. I feel like hope just expanded a bit.
Katie:
I like that. Thank you for giving me the opportunity because like I say I’ve done a lot of autistic based advocacy and ADHD based advocacy but OCD and mental health advocacy is still new to me. So, this is still – I’m coming on today to talk about OCD, but it’s still something I’m figuring out, despite the fact that it’s something I’ve lived with for a long time. I’m still trying to find out how I talk about it how I understand it, how it manifests itself, how I embody OCD is so much to untangle.
Nicole:
It’s a lot to untangle but we’re glad to be connected. You’re part of the OCD fam now here in the OCD family community. And certainly, if you listen to any of the past episodes there’s lots of resources that I tried to provide for people but also I-OCD is a great community. OCD UK is also providing support and again requires some initiation of the process that is hard. That is really hard sharing your story is really hard and you did an awesome job at it. So, I mean if we’re talking about you being able to do more things, you can do it. You can do it and whether you do it or not know that you have a family, the OCD family.