220. Why So Many Women Don’t Know They are Autistic with Katherine May

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To be loved, we need to belong.

Welcome to We Can Do Hard Things.

Big treat for you today.

We have an extraordinary thinker and writer that I have loved for a a very long time.

I have read every single thing she's written.

Her name is Catherine May, and she is the New York Times best-selling author of Enchantment, Awakening Wonder in an Anxious Age, and Wintering, the Power of Rest and Retreat in Difficult Times, which has been translated into 25 languages around the world.

Her journalism and essays have appeared in a range of publications, including the New York Times and The Times of London, and She Lives by the Sea sea in Whitstable, England.

I too want to say that I live by the sea in Whitstable, England.

You could.

It's available.

There are houses here.

I just want to say it.

I'm just going to say, I'm going to add that sentence to my bio, Catherine.

No, you can't.

It's mine.

Okay, it's yours.

Thank you for being with us today.

Oh, thank you for having me.

I'm excited.

Like I said, I've read all of your work.

And I think I read them out of order because I most recently read the Electricity of Every Living Thing.

Oh, yeah.

Yeah.

Yeah.

It's interesting because I, I don't know, I understand you backwards.

Yeah.

So that's probably fine.

Would you start?

I understand myself backwards too, Catherine.

That's a story.

Story of the

story about when you were,

I think you were listening to a radio interview interview

about a woman describing her autism.

Can you tell us that story?

Yeah, so I was at the end of my 30s and I was just driving to the optician one day.

And this woman came on the radio and she started talking about what it was like to be autistic.

And I know it sounds crazy because actually a lot has changed even since then.

I mean, that was only like six or seven years ago and like so much has changed for the better.

But at the time,

I would have considered myself to be someone that understood autism pretty well.

Half my degree was in psychology.

I had worked in school settings.

I'd worked in special educational needs settings.

Like I thought I knew it.

But for the first time, I heard it described from the inside and immediately recognized myself after years and years of searching, a whole lifetime of searching and trying to figure out why I didn't fit in with the pattern of living that everybody else seemed so comfortable in.

And it was that instant.

It was just immediate recognition and like we were the same person.

So beautiful.

I remember reading that she was talking and then the interviewer said something about, aren't romantic relationships difficult for

people with autism?

And you immediately thought, well, we're not all like that.

And then you're like, why did I say we?

Yeah, there was this sudden we.

And it was so interesting because the conversation about autism at the time was so male-dominated.

Not only was it thought the vision of the autistic person was a small boy,

but also it was always men who were talking about it.

And as the interview went on, I began to feel like this woman was being slightly patronised by someone who felt like they knew about it a bit better.

Then she did.

And all the kind of impossibilities were coming up.

Well, surely you can't have a romantic relationship.

And that still comes up in the psychiatric community now.

It's a real problem for autistic people that it's very hard for some people to believe that we are lovable.

And I think people sometimes think we're defined by our unlovability, but it is absolutely not true.

And I had this rising up of this we, like, how dare you talk about us like that?

And that's the beginning of for me of like feeling part of a community.

I think the first time I've ever felt like I fitted in somewhere, honestly.

It struck me that

that's the power of

internalized accounts of experience, because you've said that descriptions of autism are generally descriptions of what an autistic person looks like

to a neurotypical person.

Yeah.

It is rarely what an autistic person feels like as an autistic person.

Totally different.

Yeah, completely.

And I mean, having like been through all the kind of literature on it, all of the descriptions are about what an autistic person will look like if they show up in your office.

You know, like they might be moving in a certain way, they might say things.

And as I began to look into the literature, I was so shocked by the way that it was often defined as like how annoying it was to the practitioner that was encountering it.

Like we were almost by definition, these kind of slightly unacceptable people, or at the very least, we'd look weird.

The language is maybe not quite as direct as that, but that is definitely what it's implying.

And you know what?

Autistic people don't seem weird to other autistic people.

It's as straightforward as that.

And it's such an external story

that then if you're diagnosed, you're told that story and you believe it.

And so it comes with this set of impossibilities about how you could possibly be.

You can't be creative.

You'll never fall in love.

You'll never,

I don't know, you'll never be happy.

That's the message that was going around.

And I think the community has been challenging that really hard for a long time.

And it's beginning to stick.

Can you talk to us about childhood and account from the inside of childhood?

Because when you talked about, I think you were 14 and you were at a party and you experienced the party.

Can you tell us that story about how you saw everything?

Yeah.

So, I mean, I always felt right from the start that I was very different to to everyone else.

Like it was this sense of being alien, you know, and I can remember being, I don't know, nine or 10 and fantasizing that I could take off my skin and like reveal the person I was supposed to be underneath.

Like I felt like I wasn't what I should be.

And nobody had a story for that at the time because girls didn't get diagnosed with autism at that time.

There was no possibility of me forming like a positive narrative.

Like instead, I was trouble or difficult.

That came up a lot for me.

But yeah, there's a bit in electricity that I write about being 14 and at a party.

And I mean, here's a mythbuster for you.

There's this common perception that autistic people are very unfeeling and that we don't have emotions at all.

But actually, if you talk to autistic people, they'll say they're feeling everything and they're feeling the feelings of everyone else in the room.

And if they're not saying much, it's because often like we're totally overwhelmed by the sheer weight of what's coming at us.

And I had this moment at this party when I realized that I was seeing lines running between all the different people in the party.

And they were kind of color coded according to how people felt about each other.

Wow.

And so I started telling them, I was like, I can see a line between you two.

Like, do not do this at a party.

That must have gone over.

Oh, well, you not love you for it.

14-year-olds.

14-year-olds love people who are different and explaining things in a different way.

Famously accepting of that kind of thing.

And who can see inside of them?

Yeah.

14-year-olds are very comfortable with you looking deep into them.

Yeah.

Yeah.

And

being autistic, like I

didn't always have a really solid understanding of what should be said out loud and what maybe is best kept quiet.

So I'm going, oh, you two hate each other, don't you?

Wow.

Oh, and you fancy her boyfriend.

Not one of my most successful social moments.

But I've thought thought about that moment a lot ever since because those lines look so real to me.

And it's tempting to give it like an esoteric answer and tell everyone like I'm really psychic.

But actually, I think it was synesthetic in lots of ways.

And it was my brain's way of trying to interpret this information that I didn't have a way of processing, but which was coming across to me so strongly.

I certainly don't see lines anymore, but I do really recognize that I'm feeling everyone's feelings.

Feeling everyone's feelings.

See, that is not what we're told about people who are, who have, do you say people who have autism or people who people who are?

I would say, I mean, everyone's different, but my choice of language is that I am autistic.

You are autistic.

Okay.

So, so you

can feel the feelings of everyone in a room, but you are not certain what is socially acceptable to say all the time.

Yeah, I mean, I'm a lot better at it now.

Like, I'm a lot better trained at what to do.

Okay.

But certainly when I was younger, I found it very hard to understand the rules.

The rules aren't written down.

And yet, other people seem to

inhale them with no explanation.

Whereas, like, I need someone to tell me, this is what we do here.

And, you know, you say this, you don't say that.

And I still find it now.

If I'm in a new situation that I've not been in before, I'll go looking around for like what the rules are.

And I'll ask people and I'll ask people really weird questions because I need to understand the detail.

Like, do I talk to this person or what do I say to them?

How polite should I be?

Because otherwise it is so easy to break unspoken rules and they're, they're so hidden.

Does it feel like always being in a new, like if I was in England in like the royal court.

And I would have no idea about like, what am I, how am I supposed to curtsy?

Am I supposed to do this?

Does it feel like that in every new situation?

Yeah, Yeah, but at least those people publish guides to etiquette.

Like at least they've got the good grace to publish De Brett's or whatever it is.

And I could read up on it.

Whereas it's actually a lot worse in casual situations, which sometimes aren't as casual as they're portraying themselves to be.

Or you go to someone's wedding and suddenly the rules of conduct with people you know are entirely different to the normal rules.

Or

like different families have different conventions and you mustn't say this to X.

And it's nightmarish, actually.

It's like a complete minefield for me.

Do you have any like safe spaces where you don't have to worry about

assimilating to like these unspoken rules?

Yeah, I need a lot of time to switch my face off.

That's what I call it.

Like when I'm at home with my family,

I don't have to emote in the same way that I do when I'm out in public.

And I feel like I have to animate my face so that people can understand me.

But it doesn't feel authentic.

I don't mind doing it, but I know that I'm doing it for the benefit of other people.

It's a bit like speaking a different language.

And that's why I need a lot of time on my own, because then I can just let my face do its face thing and it's really nice.

But I do find that the company of other autistic people is so much more relaxing and so much more restful.

And we can relax our faces together, but also

we do that thing.

Like autistic people will go straight to the heart of anything.

They don't dilly-dally.

They'll go straight from zero to like the meaning of life in 30 seconds.

And that's where I'm comfortable.

I just, I can't interest myself in small talk.

Yeah.

I love, I love going straight to it, which I think is why I like podcasts actually, because that's what we do, isn't it?

Like there's no, no point in small talking on a podcast.

Let's talk about everything right now.

Yes.

Yes.

What do you mean when you say people carry electricity for me

because it's not just the lines between people that you're sensing um yeah you often feel like the world is made up of tiny electrical shocks for you right the touching and the consent like talk to us about how you experience all of that Yeah, one of the features of autism is this really enhanced sensory perception.

Everything feels turned up to like 11.

And for me, the thing that troubles me the most most often is touch.

So if I touch another person or an animal or sometimes like an inanimate thing,

I feel like a tingle, like an electrical charge.

And if I'm not expecting to be touched or if I'm definitely not consenting to the touch, it's like being hit with a cattle prod.

It's this horrible jolt of like unpleasant electricity.

So that means that things like moving through a crowd is a nightmare for me because I'm being touched all the time.

Boom, boom, boom, boom.

And if I have been through that, like the feeling of that touch lingers on my skin for hours afterwards, I can feel it like almost burning.

So this, there's this constant charge being directed at me.

But I use it metaphorically too.

Like it kind of works in both ways for me.

On one hand, it's literal.

I literally feel like people are buzzing me.

But also

there's a secondary part of that which is that I can sense stuff that other people aren't sensing there's this invisible feeling of current going on

and that's positive too I think that's what makes my writing possible like that ability to tune in and to feel

maybe things that seem too quiet to other people

and to like engage that deeply I think is where my creativity comes from.

It's got benefits and drawbacks.

If you're feeling energy in everything,

you're not, it's, it's not like you're feeling something that's not there, and that's weird.

Like you're actually feeling something that is there

that everyone else doesn't feel because everything actually is made of energy.

Yeah.

I mean, it's pretty direct for me.

Like, so there are some people who tell that to and they're like, oh, wow, you're sensing auras or whatever.

It's like, no, no, no, no.

It's just like it's, it's much more literal than that.

It's just being hypersensitive.

I mean, I'm like massively sensitive to noise.

I'm massively sensitive to light.

Even, you know, like an example that I often give is if I'm sitting in a meeting room and someone's got one of those overhead projectors on, every time I blink, the beam of light splits into rainbows.

Wow.

And I, it took me years to realize that that doesn't happen to everybody.

But there's this sort of minute level of sensing that is happening for me that I have to kind of then conceal.

Because if you're constantly reacting to that level of input, you're looking really twitchy.

Yeah.

And so then you learn to like not react all the time, which means that I then, that's exhausting.

Yes.

And also I then don't react properly when something bad's happening.

So if I'm in pain and I go to the doctor and say I'm in pain, they don't believe me because I'm like, I'm in pain, you know,

because I've learned so well to like dump it that, damp it down.

Yeah.

But what you're saying is that when you're seeing the rainbow in the white light, like pod squad, Catherine's not seeing magical rainbow.

Like she's actually

magical at all.

That is what white light is.

She's just seeing deeper and differently than everyone else.

And then you have to pretend you're not seeing rainbows with your face.

Yes.

Yeah.

Well, in fact, I mean, that one was easy because I didn't realize that other people weren't.

So I just thought, oh, everyone's sitting in a room full of rainbows.

The rainbows are actually quite annoying because it's quite jolty.

Sure.

But yeah, it took me a long time.

I think when I, you know, when you learn you're autistic, a really common thing is you start questioning everything.

Right.

And you start saying to people, can you see the rainbows?

And it's like, no, other people cannot see the rainbows in an overhead projector, apparently.

So if you're sitting in that room

and, you know, there's rainbows, there's something else, there's a third thing.

Do you have to just not react to any of it, assuming that it's all things that no one else can see?

Because how do you know which things to react to and acknowledge do you have to wait till other people acknowledge them to know that they're seeing it yeah and it what it will mean is i'm often like quite distracted if i'm in a room with other people because someone will have really strong perfume on which i find completely unbearable and stuff hums in public buildings like there's always something buzzing or humming like a fluorescent light or like a radiator or whatever

and someone's talking too loudly at the back and fidgeting with a pen and the light is splitting or flashing or you know all of that stuff

and

there's two ways it goes like most of the time I'm so busy trying to ignore all those things and ignoring the discomfort that I'm like quite in my own head and not in the room with people not being there um but then i mean sometimes it really pushes you over the edge you can get really upset or lose your temper and when you see autistic people having a meltdown or you know seeming to behave irrationally, it's often we're behaving in exactly the same way that a neurotypical person would if they had like a loudspeaker blaring in their ear and having to wear like a, you know, Velcro shirt turned inside out or something.

Like that's the level of discomfort we're at.

And when you see, you know, neurotypical people in pain, they react in exactly the same way.

But for us, we're at that threshold in just everyday life and it's just really, really difficult to cope with.

Can you tell the story of that you put together after the fact of at work with the dress

and how you understood yourself after the fact?

Yeah, there's a scene I describe in the book where we had to do this training to support people with dementia.

And

it involved a lot of role play.

And I am not a friend of the role play.

Like I, it's just my worst nightmare.

Is it like roleplay inception?

Because you're like, I'm role playing all the time.

And after all, I'm roleplaying.

I can't roleplay.

I'm role playing every day when I show up.

Okay, people.

No more roleplay.

But like, this is, I mean, I think this is a good example of the kind of mistake, social mistake that autistic people make, which is that we've been told in advance to bring something significant connected with a wedding.

And when I got there, like everybody else had understood the rule that it wasn't to be too much, you know, so they'd bought like a little invitation they had from a recent wedding or like a photograph.

I'd bought my wedding dress.

I'd bought the whole thing in because like that was an important thing to me connected to a wedding.

Like,

I just, I was just following the rules.

And yeah, so what ensued was like this sense of, you could just feel this sense of embarrassment arising from the other people in the room because I'd overstepped.

And I think they thought I wanted something from them about this dress.

And they were like, oh, it's really nice.

It's like, I know it's nice.

It's my wedding dress.

I liked it too.

Whatever.

I don't care what you think of it.

This is the horrible thing for me is that you suddenly realize that you've transgressed and you can't reverse out of it, but you're still not that sure what the transgression actually is.

And anyway, I got so flustered that I ended up leaving my wedding dress behind and somebody took it.

So that's how I lost my wedding dress, unfortunately.

oh my gosh that wasn't in the book someone took it that's so it was in a university room yeah

not fair i'm actually upset about this

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When you're in the room and you sense other people's embarrassment, do you feel embarrassed now because they're embarrassed are you feeling like oh

i've done something wrong here by the social standards are you feeling or is that a hard emotion for you to yeah yeah no i can feel it in my throat other people's embarrassment is like a fog yeah yeah for sure it's really funny like most of the time i don't even notice it it's only when i stop to think about it but um

I'm very, very sensitive to other people's strong feelings and it's horrible for people, isn't it?

It's like hyper empathy.

It's not the lack of empathy that we're often told we have.

It's actually like this hyper empathy that is another sensory input.

It feels physical to me.

Huh.

So you, no, it's just so, it's, it's beautiful and amazing to me.

So you told your sweet husband, I love this part.

When you said, I am autistic,

you were hoping he'd be like, well, I am shocked because you are the most normal person I've ever met.

But he did not say those exact words.

No.

Tell us about that.

Once I'd realized, it took me a long time to talk to him about it because it seemed like, I mean, we'd been together for 20 years by then.

It seemed like such a bomb to drop in our relationship.

I mean, you've been through coming out things

after long marriages.

I mean, you know, but it's like the person that knows you best in the world like how do you confront that huge what felt like a huge change to me

and i eventually got the courage lying in bed one night and and said you know i i think i'm autistic and his response was like yeah yeah i reckon yeah and that was the end of it and i i was like what have you already what you know and he was like

absolutely i've often thought it um and i said like do you see yourself as my my carer?

And he was like, no, of course not.

Like, I, you know, that's just you.

And it's, it's how you are.

And

it was, it was actually a lovely moment of complete acceptance.

But there was that small part of me that wanted to feel like I'd managed to fake it to him too.

And of course I couldn't and I hadn't.

And

it didn't matter.

Can you talk to us a little bit about what it was like to be a mom of a young kid with little Bert?

Because, oof,

those descriptions.

I found that really hard I mean to be a person who hears the the fan in an overhead projector

and then to bring a

screaming infant home

with the touch and the sound that that is just

talk to us about what that was like

Yeah, it was incredibly hard.

And I found the stage before that really difficult as well.

Pregnancy for me was a sensory nightmare.

I just was bombarded with sensation.

And then to give birth in a hospital, which was noisy and full of people and full of unwanted touch, like people do not wait to ask your consent for touching you when you are in a maternity ward.

Wow.

And I had a very long labor.

I was 44 hours in labor.

And I was, yeah, yeah, it was long.

I was, in fact, fun story.

I dislocated my hip while I was in labor.

Oh, and my God.

Yeah, it was, yeah, there was a bit of a stuck situation.

But I only last week found that I'd permanently injured my hip and I need to have surgery on it because I've been going back for 10 years saying my hip hurts.

But again, like nobody's realized how bad the injury was.

So that's like, there you go.

That's exactly what we've been talking about.

Because of the minimizing, because they think if you were in that much pain,

you would be, you would be wild right now.

And you're so level that you can't be.

So my physio finally saw some CT scans for it last week.

And he was like, oh, my God, that's brutal.

And I was like, yeah, I told you it hurt.

What an analogy for all of life.

Yeah.

Yeah.

Yeah.

But like the, the early baby stage was so hard for me.

I was so overwhelmed.

And

yeah,

the crying and screaming is hard, and the constant touch that a baby required was really difficult.

But I think the thing that I found the most harmful was

this sense of like who I was supposed to be as a mum.

Like I'd suddenly lost all my identity and people were calling me mum.

Like complete strangers can suddenly call you mum, which I found just weird.

Like, what, sorry, where did that social rule come from?

And whenever i said like i feel really depressed i feel really overwhelmed the solution was always join a mum and baby group and it's like no for an autistic person that's my worst nightmare that's like another really noisy uncomfortable unreadable social situation

and

yeah i felt incredibly isolated and i felt i couldn't explain what I was going through.

Again, there was no roadmap for my experience.

There was this set of assumptions that dropped in, which was that I was lonely and I needed the company of other mums.

And I did not need the company of other mums.

Like I rarely need the company of other people.

It runs in the opposite direction for me.

I needed some time alone.

But I also just needed someone to understand.

What I was trying to express was the sensory issues with having a small baby and how you could like utterly love this person and be utterly committed to their care.

But also your, your neurological makeup is making you so overwhelmed that you just can't stop falling asleep.

Like I was just asleep all the time.

I thought there was something seriously wrong with me because I just kept, you know, cutting out like an engine that had been overheated.

There's this moment you talk about, I think you were going for a long walk because you walk to

not have to do all this masking.

It's the place you can be free, right?

Yeah, yeah.

um

and so you were talking to your husband one day and said well i just i'm feeling bad that i'm taking so much time away so i'm gonna stay with you all with bert and your husband yeah and he was resistant to it and he said our time together is easier without you when you're oh he didn't say that but he said when you're with us everything bothers you yeah That moment for me was just like, I don't know.

I related so deeply that, how that must have felt.

How did that feel?

It was, I think, honestly, like one of the hardest moments of my life.

I mean,

so in electricity, I write about I walked the Southwest Coast Path and I just, I needed this walk and I was going out and walking.

And H and Burt would go off on their own and do like a nice thing.

They would go to like a children's zoo or whatever.

But I began to feel really guilty for all this time I was spending alone.

And I thought that when I said, no, no, no, I'm not going to walk tomorrow.

I'm going to spend the time with you.

They'd be like, yay, we've got you back.

And instead, there was this awkward kind of shuffling and this like, well,

actually,

we kind of don't want you around because it's more fun without you.

And of course, he didn't mean that in general, but what he meant was like, I can't tolerate.

a children's zoo or you know i i can't tolerate a fairground i get fed up i get completely overwhelmed and i I want to go home.

And I still know this now, like when it's just the two of them, they stay out for a lot longer than I do because I reach my limit.

And it was so painful to learn that, that actually that I, rather than being like the mum that they were missing and wanted to spend more time with them, they were like, oh, we have a nice time without her.

And thank God she's going and doing this little walk.

And it came from a good place because they knew that I was calming myself and and that I was actually coming back feeling better.

But yeah, that was a hard, hard moment to realize that I was not

always a positive effect.

Like me being there was not always a positive thing for our little family.

Yeah, I get that.

What I'm saying is I'm a pain in the ass.

Yeah, yeah, yeah, yeah, yeah, yeah, I get that.

Beautiful pain in the ass.

So

you start telling people outside of your family and talk to us about when you tell someone how you're afraid they're going to treat you differently or see you differently i remember hearing that one of your friends when you told them that you

that you were autistic one of them said i'm sorry to hear that

what the actual happened how did that go and how does it go now how does it go well how does it go poorly

I mean, it's actually the best test of how decent people are that I know now, because actually

it really sorts the wheat from the chaff when you tell them you're autistic and some people just back away from you and never speak to you again it's like great bye thanks very much you know but I mean when I first said I was autistic on Twitter I lost a quarter of my followers overnight like immediately and got a few angry emails from men uh specifically sorry men but yeah got a few angry emails like how dare you one of them was like I thought you were normal

it's like yeah well i was never putting that around yeah but um

but actually

yeah and there was this moment like for all my doubts through the process and what was i in this and what did i think of myself and what did it mean the first time someone said oh i'm so sorry i was furious and it made me really understand that I was beginning to value that new identity, profoundly value it, and that it really mattered to me and that I knew I was no worse than anyone else, just different.

But there were some lovely, lovely, lovely responses too.

And people really

being thoughtful about it and saying,

I kind of understand this thing about you now that I always wondered about.

You know, like one of my friends said, that's why you always disappear at parties.

And I was like, what?

I don't, what?

And she was like, that every single party I've ever been with you,

you've just vanished at some point in the evening and i mean i thought i was hiding it a lot better than that right but um

but you know i would tell myself that i loved parties and that each individual party wasn't a party for me and i wasn't enjoying it

and it's amazing like that is about the narratives you tell yourself and learning i was autistic let me go oh i hate parties like parties are awful oh my god and i was always hiding at the bottom of the garden or locking myself in the bathroom and i I mean, sometimes I'd crawled under the pile of coats on the bed.

And it's nice under there.

Anyone ever needs a nice little place.

It's great.

I used to think that every boy I kissed was just a bad kisser.

Yeah.

Yeah.

And it wasn't that.

No, it sure wasn't, Catherine.

It sure wasn't.

And then when you find out,

it's so much of the individual assessments of everything.

Yeah.

And then also stuff you thought was damage about yourself.

I know.

And then you become part of this community.

And the fury that comes up in response to anyone's pity is actually suddenly pride.

Right?

It's

connection.

Yeah.

I mean, people talk so much about identity politics and problematize it.

And those people have just never experienced what it's like to finally know what you are and the way that everything falls into place and the way that suddenly your self-worth just lands.

Like I'm not a wonky neurotypical, I'm a great autistic person.

I'm really good at it.

Yeah, yeah.

Actually, actually, I'm not because I still struggle to meet my own needs with it within it because it takes a lifetime of unlearning.

But yeah, I'm trying.

To finally know what you are.

That's such a lesson broadly, because this is about this, of course.

And

also,

all of us are walking around masking something about ourselves.

Sure.

And when you finally know what you are and you can accept it, then you're just out there being who you are.

Yeah.

There's something beautiful about that.

So simple.

And the proof is really in the pudding.

The studies that say that only 5%

of Autistic people are confident that they would change it if they could.

It's like this outside world is looking and saying, Oh, I'm so sorry.

And the people inside the world are looking out at the other world and being like, We're sorry for y'all.

Yeah.

Yeah.

Well, we're not even doing that.

We're like, this is just fine, but what we need you guys to do is like maybe turn the sound down a bit and like leave us alone a little.

And everyone's grand.

Yeah.

But yeah, it's such a big thing.

What struck me so much about when you talk about this is like, I think an outside perspective would be, well, you're doing a great job being autistic when you're assimilating as much as possible, when you're staying longer at the party.

But actually, the inside perspective is, no, no, no, I know when I'm doing that, I'm not doing the best job.

That's right.

Tell us about that.

What's the measure?

You have to learn all these counterintuitive things.

And actually, you have to learn that in defiance of a lot of the therapies that are offered for autism, too, which say, we're going to teach you how to look like a neurotypical on the outside.

And those often do a lot of harm, honestly.

They teach you to mask even harder and to probably feel even greater shame at like not converting.

But yeah, for me.

learning I was autistic was a moment when I started to be able to think, oh, this isn't just like me being awkward.

This is a need that's expressed expressed on a bodily level.

And I need to learn how to meet it now.

And so I learned that I needed more quiet in my life.

I needed more times when I wasn't talking.

I needed different social situations.

Like I'm really happy talking to like one or two people or three maybe,

but not 10 and certainly not 20.

I needed more rest.

I needed to walk and to move.

There's something about that electrical feeling that really goes away if I can tire my body out.

And that sort of somatically soothing rhythmic work, like walking, for me is what works really well.

I need to submerge myself in water regularly.

Like that helps me so much.

It calms me right down.

It takes me.

back into my body when I feel like I've left it entirely.

All of those things are our needs in the same way that a neurotypical person might be like, I need to see people, like I need to party sometimes.

I need to like, you know, like that.

There's nothing wrong with that.

It's just not what I need.

And when you start thinking about these things in terms of need,

everything changes.

It's another rearrangement.

But it's...

it's still very hard because

expressing those needs often puts you on a collision course with everyone else's needs you know and so i still have to choose when i get to say it because sometimes it's too much trouble to even bother and it can cause more fuss and

you kind of learn that i think i'll be learning it for the rest of my life how to get it right because also

Sometimes I overadjusted as well.

Like, first of all, I thought I never wanted to see another human being for the rest of my life.

And that wasn't true.

I like people, just not all at once.

Yeah.

But the measure of progress for you is not, I'm getting less overwhelmed.

It's I'm staying when I'm overwhelmed and leaving.

Yeah, exactly.

Well, it's both actually, because I am

so much less overwhelmed on a on a moment-to-moment basis that it's really hard to even imagine what life was like for me before, honestly.

You know, like I used to put my feet into shoes that made me uncomfortable and clothes that were uncomfortable and even little things like that were kind of itching away at me on a on a kind of moment-to-moment basis but yeah for me the real hard work behind it the real practice i have to keep returning to and reminding myself of is

i get to meet my own needs

what are my needs like i have to understand what they are and they've been so far pushed down like across a whole lifetime that it's it was hard at first to even

perceive that you know my intuition was all wonky.

My gut feelings were like all out of line.

And my ability to understand what I needed and when was

just thrown out totally.

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So you're like a detective and a

mystery at the same time, right?

Because you're writing about you're being introspective.

You're chasing who you are, but you're also running because that's what we all do, the cat and the tail.

Yeah.

So before I

understood that I was queer, I used to every once in a while read a review because I have a hard and fast rule for myself that I will never read a review.

So I read them all.

So of course you read them all the time.

Yeah.

So

that would say, oh, she's queer.

And this is like way before.

Because your work before was like, wow, that's interesting.

Was it?

Sorry, I'm going to ask you questions there.

Was it queer people, other queer people who saw that in you?

Yeah.

Or was it straight people being accusatory?

No, I think it was queer people being like, oh my God, she's going to be out in a few years.

Yeah.

Because

I think a lot of my work was trying to understand like, what is this kissing people are excited about?

Like, what is sex?

I don't get it.

I don't.

Right.

Yeah.

So it's weird to have people watching who are ahead of you.

Did no one in your your life ever say, hey, have you considered autism?

No, but I think, again, like even those few years ago, we were so far behind on understanding what it was.

I don't think it was possible.

I mean, I think now,

even now, it would have changed.

But like, I've been part of introducing that concept to everybody.

I now have that feeling.

Like, I see people who are clearly autistic or neurodivergent.

And

sometimes I'm in conversation with them and I'm like, do I tell you?

Like, should I?

It would solve so many problems for you.

But of course, you can't because it is something you have to understand for yourself.

I think it is a kind of journey.

You can't impose it on anyone.

But yeah, like then six months later, those people are often in my inbox going, oh, hi, Catherine.

I just, I wonder if I could talk to you because I think I might, you know, you're like, yeah, yeah, you are.

Welcome.

Come in, come in.

so is that part of your working role is that you think it's important for people to come to it on their own because it seems like your husband believed

that it was important for you to come to it on your own i don't know if he'd have thought about it in in those terms i mean i i think he's just not someone that would like it you know he just wouldn't he wouldn't do that he wouldn't kind of diagnose you in in that kind of way yeah i think autism is still such a difficult language for so many people.

You never know how it's going to land.

And

I don't ever want to make people feel like a power play is happening.

I think that's how it can land.

Sometimes if you say,

I think you're autistic, I think it can feel insulting to people.

I don't think it's insulting, but I get that.

And I also think it can be a way of saying, I know more about you than you do, which of course is an incredibly uncomfortable feeling.

And also I have no right to diagnose anybody else either.

And so I just listen and

explain my experiences in the context of autism and see if that can land a little sometimes.

Yeah, it's like when some of our kids' friends come over and I get that Gator sense

and I just keep my pretty little mouth shut.

And I just think, well, we'll see what happens in a couple of years.

And it's the same feeling.

Like recognizes, like, but under these circumstances of where we are in the world and all of the

ways that we impose shame on some of these things.

And also, that's their journey.

Yeah.

You can't steal that.

You can't take that from them.

Yeah.

But what's amazing is you're there.

And when they come to that, they'll know to come to come to you.

Like, I have this model there.

And that's like, I'm really happy with that.

Yeah.

So quite often, Catherine, I get a letter from someone in the pod squad telling me that I have autism and listing and listing out all the reasons.

And I don't like it, but it's not because of

a negative feeling about it.

It's because I don't like when people think they know more about me than I do.

Yeah.

I agree.

So that's how I felt about the queer thing.

I was like, I like queer people better than straight people for sure.

So it wasn't that.

It was like, wait, I'm doing my best.

No one's trying harder to know what they are than I am.

So give me some time.

But also autism is a complicated label and it's based on some very shoddy research.

And that research has not been fully resolved out of the psychological community yet.

And new researchers are beginning to come in, like autistic researchers researching autism are beginning to come in.

And we are now at a place where we understand like less about autism than we think we did 10 years ago.

Everything's up in the air.

I mean, not everyone will admit that to you, but the people that are at the forefront of the research will now say to you, we no longer have a very stable definition of autism.

And I think given time, that label is going to change.

We might use different words for it.

We might have a more nuanced understanding of it.

But it is so singular to individual individual people that to go in and land that label on them to me feels really aggressive because it's not a stable understanding.

And the best we have at the moment is this community of people who are all like, I see you, you see me, we're the same, but I can't even articulate how we're the same because you might not be able to bear water touching your skin and I crave it.

or you might crave like really loud music to settle yourself and I can't bear it.

We can see the lineage between those two experiences, but how do you start to define

that and the kind of character that comes with it?

And it's a little bit like, you know, the LBTQ community that are now so

atomic in a really exciting way.

Like people are really beginning to think about gender in, to me, exciting ways.

And there's a huge crossover between autistic people are much more likely to be trans, gay, bisexual, non-binary, asexual.

We do not fit squarely onto the binary gender spectrum in any way.

Like most of us are very uncomfortable with that.

And

yeah, it's not the moment for us to go out and be taking converts because we don't know.

And it's a great moment for people to be saying, I recognize this.

I'm coming towards you.

The accounts from the inside are so freaking important because a lot of what I've read has reinforced the idea that autism means you don't feel the feelings of other people.

Or even your own feelings.

Or even facing it.

So I'm like, oh, God, I can't even walk into a room without feeling like so much.

So

it's just wonderful to hear.

And I mean, let's politicize this a little bit as well, because I mean, what would be the best way to other a group of people?

It would be to say you don't feel the.

the most valued human emotions, particularly love.

Like that's something I gave up talking about about electricity at literary festivals because people kept asking me if I was capable of loving my son.

And I can't imagine a more offensive or othering question to ask anybody.

And to hear a whole hour of me speaking and then to wonder if I was capable of something

that

our society values above all else as a good thing.

We have to understand that we have created a definition of autism that is supposed to be repellent and that is supposed to identify an outgroup of people who we don't think are quite fully human and quite good enough.

And why would anyone feel invited into that label?

But it's full of untruths.

And it's so dangerous as well, because

our only understanding of autism on a big scale at the moment is people in crisis and people struggling.

And we don't have a solid picture of happy autistic people or autistic people who are coping or autistic people who are leading a productive life.

And we urgently need those things out there.

Can you tell us about the raptor imprint?

About the raptor imprint.

Yeah.

I remember reading about it in the electricity of every living thing.

And it was like an imprint in this thing.

And then you said, I am an imprint who is learning my wildness again.

Ah, yeah.

No, I now see what you're talking about.

Hawks

and birds and wild birds and actually parrots and pigeons as well.

When we tame them, it's called imprinting because we are teaching them to treat the human as their mother bird, essentially.

And therefore, we're teaching them like human acceptable behaviors.

And those birds get called an imprint because they're not natural birds.

They're not exhibiting their natural bird behavior.

They're exhibiting like learnt behavior from

humans.

And that really helped me to think about myself, actually.

It really helped me to

understand

what my state of being was, which is that I was a different kind of creature who had learnt their neurotypical behavior from the outside and had learnt to mimic it and had learnt to behave in a way that pleased neurotypical society, but which was actually

not

elemental to me.

But one thing we do know is that it's very unlikely that an imprinted bird can ever lose its imprinting.

Um, and I think there's a truth in that for me, too.

Like, I have not grown up understanding how to be me, and I'm not truly sure what that would look like 100%.

I inch closer to it, yeah, but you're relearning your wildness, Catherine.

I wrote this book called Untamed, and the yes,

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okay so when i read your story about being an imprint and relearning your wild

i

immediately just wanted to call you because

the kind of parable story that I opened Untame with was about a cheetah

who was running because

back and forth on this ridiculous performance for the crowd because the cheetah had been raised with a black lab

to learn how to be a lab, not a cheetah, but that

they have found that these cheetahs somehow, even when they're born born in the in captivity and they've only known themselves as labs, have still the wild cheetah-ness inside of them and can be rewilded.

Yeah.

Yeah.

I love it.

It's such a compelling image.

And

I don't know.

It fills me with sadness actually, because I think

the more I've understood my own tamedness and how hard it is to combat that sense of having been tamed, like sometimes quite aggressively, you know,

the more it breaks my heart when I see tamed animals as well.

Like, I feel that link so strongly.

But also, when you start untaming yourself, when you start like rewilding yourself, de-imprinting yourself,

you

see

other humans all around you who are in desperate need of it, you know, and I

it makes me, it really does break my heart when I come across those people.

And I obviously being me, like, I feel their discomfort.

I feel the discomfort they're living with, whatever that's about, like whatever it is that they're suppressing.

And

yeah, wow, there's a lot for us all to learn on that.

But it's such a beautiful thing.

Such a beautiful thing when you start to do it.

Catherine May, thank you.

You, oh, I mean, you're just such a teacher for every single person who is trying to live closer to who they were born to be and not who the world tamed them to be.

And that is everyone on the earth.

So, Catherine, I just want to thank you so much because, you know, Glennon, she talked a little bit about getting the emails of people thinking she's autistic.

And regardless of whether she is or not, your work brings me closer to understanding a highly sensitive person and somebody who might need to take care of themselves in different ways that I wouldn't necessarily need to.

And so I'm just so grateful to you for the work that you do and for giving me the idea bubbles that make me think, okay, Abby, maybe you're not like Glennon and maybe she has.

needs something oh thank you i appreciate that am i one of those people catherine that you're like, I think she might be back to me in a few years?

Yeah, I've always thought that, I have to say.

I mean, other people read your book thinking you were gay, but I was like, oh, yeah, she's, she's one.

But like,

you know,

the label is yours that you choose to wear.

And also the way you approach that is as well, because I mean, for a lot of people, they don't feel happy identifying in that way unless they are fully diagnosed by, you know, someone with letters after their name.

But for loads of people now, self-diagnosis is becoming more valid because so many of the diagnostic criteria are out of date and there are so many ways to approach it.

But the most up-to-date researchers are talking about hyperempathy and hyper-creativity, and that female autistics in particular report that.

Although I think that probably just means that we're missing a load of male autistics who don't understand that they can identify in that way too, rather than the other way around

huh

wow wow so the research has historically been on middle-class white like

10-year-old boys yeah that is so shocking that is so different than every other research

so there's now that all of this different diagnostics that are

adult women the way it's shown yeah well there's very little standardized but there are different practitioners who are specializing in in identifying autistic women now one of the reasons it's important to talk about women in this is that we're more likely to have been missed in childhood because of the gender bias and so

we don't actually have very good like

you know standardized methods of understanding who we are and so there's a lot of innovation going on in at the moment.

But I mean, just to just tell you how it was for me when I went for my diagnosis, I was taken into a room with a child speech therapist and sat on a tiny chair for children.

I'm six feet tall and given a children's book to read and asked if I understood the story.

No,

that did not happen.

That absolutely happened.

And I said, I'm halfway through a PhD in narratology at the moment and I'm a writer.

Like I understand stories really well.

Thanks very much.

And I was just told, well, like, this is the best we've got.

And I was so humiliated I left

because it was not okay.

And we are moving forward

in that now.

But I think it's one of the reasons why it's so important to really validate people who self-identify as well.

Not least because a lot of people can't afford to access good care and good diagnosis, but also because

like sometimes the community knows better at the moment.

We're just not there yet in a really stable way

thank you thank you

thank you so much you are the absolute best awesome yeah also your husband yeah just adore him being very quiet outside the door bye pod squad see you next time

If this conversation has you asking yourself questions about whether you or someone you love might be autistic, here's a little post script to the show.

Catherine shared with us that she hears regularly from people who think they might be autistic and want more information, as well as from people who have received an autism diagnosis and are struggling with what that means.

She was kind enough to share with us some of her resources for helping to identify and understand autism, which I will now share with you.

First, she wants us to know about the autism spectrum.

Autism is not one consistent experience.

Instead, each autistic person is unique.

The term autism spectrum does not refer to people being quote more or less autistic, as is commonly thought, and neither does it suggest that quote we are all a little bit Autistic.

Instead, it points to the range of experiences with Autism.

Autism is a neurological difference that affects how people interact with and experience the world.

Catherine wants to share this list of some of the things you might notice challenges with or differences in if you have autism.

One, sensory processing, that is being more or less affected by smell, light, touch, sound, and taste than the general population.

Two, in your social life, you may find social situations challenging or you may feel different from others.

Three, emotional perception.

For example, if you find it difficult to understand your own feelings or feel overwhelmed by strong emotions or empathy.

4.

Intense interests and fascinations that feel central to who you are.

5.

Anxiety, meltdowns, and shutdowns.

This is extreme distress caused by everyday experiences.

6.

Executive function issues.

Autism often co-occurs with other neurodivergent conditions, such as ADHD, dyslexia, and dyspraxia, as well as physiological conditions such as hypermobility, epilepsy, and gut problems.

It is worth noting that some of the features of autism, such as anxiety, may be due to the lived experience of autistic people rather than being intrinsic to autism itself.

The information I've just shared, as well as a multitude of other resources, can be found at Catherine's Autism Research page, which is catherine-may.co.uk.

If this podcast means something to you, it would mean so much to us.

If you'd be willing to take 30 seconds to do each or all of these three things, first, can you please follow or subscribe to We Can Do Hard Things?

Following the pod helps you because you'll never miss an episode and it helps us because you'll never miss an episode.

To do this just go to the We Can Do Hard Things show page on Apple Podcasts, Spotify, Odyssey or wherever you listen to podcasts and then just tap the plus sign in the upper right hand corner or click on follow.

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While you're there, if you'd be willing to give us a five-star rating and review and share an episode you loved with a friend, we would be so grateful.

We appreciate you very much.

We Can Do Hard Things is produced in partnership with Cadence 13 Studios.

I give you Tish Milton and Brandy Carlisle.

I walked through fire, I came out the other side.

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I hit rock bottom, it felt like a brand new start.

I'm not the problem,

sometimes things fall apart,

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the best

people are free

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But I'm finally fine

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A final destination

we lack.

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to places they've never been.

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bring,

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We can do hard

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