Greetings, rabble rousers.

My name is Jessa McLean and welcome

to Blueprints for Disruption,

a weekly discussion dedicated to

amplifying activism across Turtle

Island.

Together, we will examine tactics,

explore motivations, and celebrate

successes in disrupting the status

quo.

This podcast is a proud part of

new left media.

We've labeled this episode Autistic

Resistance the Foundations.

It's an in-depth discussion with

Lulu La Conceal, an autistic

and disabled advocate, an

academic that really doesn't sum

up all the things that Lulu does.

You're going to hear some sorely

needed myth busting.

It's going to be a critical look at

so-called progressive policies that

are negatively impacting disabled

people.

Lulu is going to help us all get out

of the past in terms of what we

think we know.

Autistic and neurodivergent people

need to thrive.

It really is incredible what we can

learn if we just listen.

Welcome to Blueprints of Disruption.

Lulu, I am so happy

to have you on the show.

You've been a wealth of knowledge

for me for

a few years now, and so I'm excited

to share your voice with other

people.

Can you go ahead and please

introduce yourself to everybody?

Sure.

So my name is

Lulu Larcenciel.

I am she her.

I am an autistic

and disabled

advocate, activist

and academic

in currently

living in St Catherine's at Brock

University, studying

young autistic people's wellbeing.

And I have

been a

sort of political and social justice

volunteer and

advocate and member

for quite some time.

Also being queer, I also

have a lot of sort

of strange and exciting

experiences from queer advocacy,

although most of those are not not

very novel and have been on many

podcasts before.

So probably I'll focus more on the

disability angle, which

I feel like really hasn't been

represented that well in the past.

Thank you, Lulu. I mean, that's

definitely been my experience

organizing on the left.

I've never seen a group

as a so-called equity seeking

group marginalized more

than the disabled community.

It's it's

shocking to see on the left.

I would say.

Yeah, it's not so much of

like a comparative thing either.

Right?

And it's I mean, I think,

you know, being queer,

being a woman, all of the groups

that I am a part of have been

horribly,

you know, prejudiced and

up against and and oppressed.

But I think it's

it's it's a kind of hypocrisy

where.

The same behavior

or similar behavior

on the part of politicians

towards disabled people

that they absolutely

revile in other politicians.

When those politicians do that

to women or whatever

other group.

And I do think that

that is quite an interesting

phenomenon.

But I I'm not

I'm not big on the comparisons

because then you can sometimes get

into sort of conflating

different kinds of problems, you

know, black autistic people

face.

Mountains.

Exponentially more violence

than white autistic people,

for example.

And even within our party,

you know, within various

political structures, within

academic institutions,

even within,

you know, most aspects of

society.

And it

again and I'm sure

you talk about intersectionality

and, you know, every interview

you have, I'm sure.

And that's important because.

Yeah, it is it is 100%

true that disabled people are

marginalized and pushed

aside in left

circles in a way that is just

completely absurd.

And it's it's contradictory to

everything that those those left

circles

say that they're standing for and

say that they're

fighting for.

And then to turn around and and

sort of do the opposite to the

disabled folks in their midst.

It's it is startling how common

it is.

Absolutely.

I understand you're kind of checking

me there on the comparison.

I do appreciate that, because you're

100% right.

It's just yeah, it's just I expect

better, you know, when you see,

you know, abled people chairing

the disabled committee,

you wouldn't see that otherwise.

So, yeah,

it is very interesting.

I can't imagine an organization

which is committed to social

justice and anti oppression,

you know, hiring a man

to be the

women's coordinator.

But you will find someone who's not

disabled as an accessibility

coordinator.

And I don't understand how that

happens.

I don't understand how that's not an

actual expert on

disability, an actual disabled

person being put in that role, but

just a non-disabled

person who's getting that tacked on

to their other job

as though it's just, you know, some

other task, as though it's not a

critical tool

to ensure that,

you know, a fifth of

the population has access to your

organization.

Yeah, you frame it as like a

dismissal of its importance.

It's true. I thought of

the paternalism that goes into

that thinking that,

you know, if even if they thought it

was critical, it could not be left

to disabled folks to do.

Very interesting conversations that

go on about, you

know, whether whether disabled

people are capable.

And this is something

this is something which is used

as an excuse across systems.

Right. This is an excuse that's used

to deny people

accommodations.

If you already seem like you're

capable of doing something, even if

you're disabled and you're saying,

hey, I need this accommodation,

you know, it's it's used to

to kind of mock people.

It's used to to kind of try and

drag someone down when they ask for

something and say, oh, well, if you

can't do this without it

and really try to make you feel bad

about it and

it's unfortunately,

yeah, it really does lead people to

these bizarre

and incredibly cruel opinions

and suggestions that disabled

folks aren't capable of

moderating our own spaces

and deciding

what accessibility is necessary

that has to go through non-disabled

gatekeepers in every

organization I've ever been part of,

which is horrifying.

It's just disturbing.

You you listed

a bunch of A's when you introduced

yourself. You're an academic, you're

an advocate, you're an activist,

but you're autistic.

If you don't mind, I would like to

focus on that because

and the comment that you made

earlier about capacity

and misconceptions.

So you seemingly, you know, you

listed a whole bunch of things that

you do. I know you left off a

lot of stuff because we're going to

have to talk about the end and end

up later.

And so you do

a lot you're breaking

misconceptions about people with

autism, right?

There are.

Autistic people.

Autistic people think

what what other misconceptions

are people holding, especially

on the left, you know,

comments that, you know, we'll be

listening about autistic

people.

And particularly

their ability to advocate.

Yeah.

Um, so

this is an interesting and

especially that last sort of part of

the question about advocating

because, yeah, I'm artistic,

I'm a

queer.

Artistic who was

like, who? And I'm closest this

woman.

And among

autistic people,

women are.

Horrifically underdiagnosed.

And this has led to one

huge conception and

misconception, which is

a lot of people still believe.

Yeah. No, this is also true on the

left. I was just checking in my

brain.

Yeah. A lot of people believe that

autism is a boy's

thing.

This is a stereotype

which has been true for quite some

time.

Across cultures,

they have this stereotype across

and this is partially due to

some really flawed research that

came out quite early on,

which called autism

a male brain disorder,

which, yeah, it was

just silly, quite frankly.

It was just a really silly theory.

It's been disproven a number of

times, but this this

myth persists.

And the reason that I use that one

first is just because it's a really

easy obvious.

Myth.

It's very clearly a piece of

misinformation that that

that there are more autistic

boys than girls.

But this is something people believe

wholeheartedly.

And, you know, research over the

last ten years all contradicts

that and says that girls

have been wildly underdiagnosed

and wildly under-recognised

as autistic girls have

gone without accommodations,

without recognition,

and they've ended up in severe

mental distress.

They've ended up with depression,

they've ended up suicidal.

Many of them are no longer with us.

A horrifying study was recently

revealed right here

in Ontario from 2010 to

2016.

Autistic people were six times

more likely to die than

non-autistic people with

other matching

demographics.

That mortality rate doesn't

come out of thin air,

and a lot of it is due to

misconceptions that lead to

autistic people going unrecognized

and accommodated.

And the reason that I really focus

on that is that.

The way people conceptualize

autism right now

is.

Based on all of these different

myths, and they're sort of piecing

these different stereotypes and

myths and things they've seen in

sensationalized movies and

things they've heard from, you know,

their their neighbors

brothers got a kid

who's autistic.

And so they know from hearing about

that.

And that doesn't actually result

in knowledge, right?

That doesn't actually result in

understanding a situation,

especially something as complicated

as the human brain, which is

where autism, you know,

is located.

Autism is the way that a brain is

wired. It's it's the way that a

brain and nervous system

are connected to each

other and the way that the nervous

system interacts with the world

around it.

My cat is just

causing some trouble, so I just have

to get him settled so that I can

make sure he's not going.

Are you going to just chill or.

This isn't just any cat, by the way.

This cat has been immortalized on

fridge magnets around

around the globe.

Sure.

Yeah. I mean, another thing about

autism is a

trait of being autistic is

when you like something

are just going

ahead and letting yourself like it.

And one of the things I really like

is cats.

And my cat is the best cat.

As any cat owner knows,

your cat is the best cat.

That's just science.

That's how that works.

And yeah, I definitely

also love making buttons

again, thanks to advocacy.

But I got a button maker for

as a graduation present,

and so I have definitely made

buttons and magnets of my cat

and sent them

all over the world, actually, not

even just all over Canada.

So

we have one on my fridge.

I got my daughter playing with it

the other day. I'm like, Oh, that's

good. He goes up top,

he's got a cab along the bottom.

But yeah,

you talked about accommodations,

right? And I think

right now when we think

of dealing

with autistic people, I

say it because I feel like that's

how people look at it, not because

they're thinking of accommodations,

but what they're using right now is

a lot of ABA therapy, right?

If you're in the NDP, you're getting

talking points.

How important this therapy is

and it's

a large basis of

our funding model

is that how we should be

accommodating? Is are these the kind

of I know your answer, obviously,

but what's up with that?

I mean, why is it so focused

on that and not actually

accommodations?

Yeah, this is

an excellent question.

And, you know,

I, I think it's actually

also a good point to put

the question in because it really is

a fundamental part of how people

misunderstand autism and

autistic people.

A lot of people will see me

doing advocacy.

They'll see me on,

you know, the last few years.

The only reason I've been able to be

so successful is the last few years

we've all been doing

things remotely. And so I've been

able to do things from my own house,

and that's where most of my

accommodations are in

my house when I have to leave my

house and and I have to, you know,

pack the accommodations I can take

to go

in. Normally, I end up

not being able to do as much stuff

and not being able to.

You know, you said at the beginning,

I do a lot.

I do much less

when I have to do it without all

of my accommodations.

And

the reason that

all of these accommodations are so

helpful to me now I've got things

like stim toys, which

are just little.

I've got, for example, a little

3D printed worm

that kind of click says as you

as you wiggle it along.

And this is something that I can

hold in my hands while I'm having a

serious political meeting and

I can feel the way that

this is.

It's a little bit stronger of a like

a stripey kind of plastic

if you've ever held on to like a 3D

printed thing before, you know,

there's like a grain to it.

And so I can feel that grain and I

can feel the way that the different

interlocking parts of this thing are

moving. And I can process

that and I can hear this distinct

little clicky noise that it makes.

And I can do all of that while

I'm in a meeting so that my

sensory system, which needs a

serious amount of input at all

times, is regulated.

And that means I can actually

process what that politician's

saying and then I can respond

to them with the information that is

there in my brain ready to respond

to. Now, if I'm sitting in a

meeting room and there's flickering

lights which are giving me a crazy

headache and my eyes hurt

and everything's way too bright in

there, and it's actually kind of

cold and I'm sitting on this chair

that is just I cannot sit

comfortably in and because of

professionalism, I can't put my feet

up on the chair and I can't cross my

legs.

So I can't have that sensory input

either. And I can't be fidgeting

with something and I can't have

anything in my hands.

And I have to be looking at this

person's face in front of me

and I have to be monitoring my own

facial expression and I have

to be doing all of these things.

I don't have the energy left to

listen to what they're saying.

I don't have the energy left to come

up with something to respond with

because my brain is too busy

processing all of this sensory

information with absolutely no

regulating tools.

And the reason that I explain it

this way is because

I could be explaining a political

meeting that I took part in as

part of a writing executive,

or I could be explaining

math class

when I was eight.

And they're both the exact same.

Exactly the same.

Autistic people are human beings.

When we grow up,

we actually have mostly

the same needs

and we actually go

through the world as unique

individuals.

And that means problems that we have

as kids are going to persist

as adults.

Now, a lot of people's solution,

like you say to the problem,

a lot of people's solution

to having to deal with autistic

kids is.

Yeah, right now behavioral

intervention.

And so this means that

when a child is unable to

sit still in

the lights without

playing with anything

and pay attention and look in their

teacher's eyeballs,

they are having bad behavior.

They're having problematic

behavior.

And so they are referred

to behavioral intervention

to change their external behavior.

Now, some of this behavioral

intervention starts with like

a behavioral

assessment

where they try to pin

the cause down on

a narrow little

list and then they

try to change the behavior.

And so they they

show the kid the behavior they want

to see, and

then they tell the kid it's their

turn. And if the kid does the

behavior.

Sit still.

I sit still.

Look at me in the eyes, talk

out loud, say this exact word back

to me, point to this thing,

whatever else, put this thing on

that's uncomfortable for you,

You know, whatever it is,

interrupt what you're doing to wave

at this stranger, whatever

it is.

And these are all the

more benign ones.

To be honest, there are much worse.

You know, and then if the kid

does it, then

they get a lot of praise

and positive feedback and a lot of

the time, like stickers or candies

or they get to play with their

favorite toy or

they get to have their comfort item

or whatever else.

And then if they

do it wrong, then they

get told to do it again.

Positively with a big smile.

They get told to do it again.

Why is that bad, Lulu?

You know, a lot of parents would

hear that and go, Yeah,

I do a form of that kind

of. Absolutely.

You know, absolutely.

I got my kid inside with an M&M

yesterday.

So the problem is.

There is a reason.

That autistic children.

Need accommodations.

Autistic people are

wired differently.

Our bodies and brains react to

the world around us differently

than non-autistic people.

Behavior interventions.

Goals

are based on non

people.

These are goals that

are based on

what non autistic

people are

expected to and

normally able

to do without thinking.

Even things like.

Like making eye contact,

for example.

But for an autistic kid,

something like sitting still

without playing with something

or making eye contact with somebody

is painful.

Now, here's the other thing.

Another misconception is that

autistic kids reacting to sensory

stuff is because they don't like

it.

This is phrasing that's used

or that they're scared of

it. People will say, Oh, my child is

scared of the vacuum cleaner

because she covers her ears every

time I turn it on.

And that's not fear.

Maybe that becomes fear

of sensory pain,

But sensory pain is not dislike.

It's not fear when you're

overloaded in one of your

senses.

It feels as though you

are going to burst

when I have to, like, go

outside into a bright sun,

sunny day with no sunglasses

on. It's not that I'm kind

of uncomfortable.

It's that I'm in pain.

It hurts.

And what happens when we reduce that

to behavior,

when we say, oh, no.

Well, the external behavior.

Oh, she's she she

screams and hides when we take her

outside in the sunshine.

We have to teach her to stand still

in the sunshine.

We have to teach her to stand here

like the other kids are standing.

So we're going to

we're going to enforce her.

Until she does that, until she just

stands here like the other kids are

standing.

And then you've got

a little kid who's in pain

and who's not telling you she's in

pain because she doesn't know how to

describe that and

who's not able to go anywhere

because they've prevented her from

going anywhere and hiding.

And she's not able to do anything to

escape the sensory pain.

And she's also not allowed to

acknowledge that sensory pain out

loud.

I don't know who might believe

that sensory pain is going to

disappear because of that,

because what actually happens is it

builds up inside of

that person.

And autistic people have so

much sensory

pain and emotional overwhelm

and informational overwhelm

and change, overwhelm

going on inside of our brains and

bodies at all times

that what inevitably happens

is the dam bursts

and we have

serious distress

because of that, because we are

completely overloaded.

And again,

people want to treat that

behaviorally.

People want to say that

an autistic child who has

been stressed and overwhelmed

all day by the sensory

hell that is our public

school system.

Has been absolutely

decimated by the lights and

the screaming of the other kids

and having to look up from the work

that they just want to be doing all

day long and then getting

in.

Trouble for fidgeting.

Getting in trouble for fidgeting,

having to try and hold yourself

still.

And then they get home.

Of course, they're going to cry.

Of course, they're going to need to

release that pent up energy because

we pushed them down all

day long and then we

expected them not to come back

up into their their human form.

These are people.

Children are people.

And it really seems like folks

forget that these behavior folks,

because children are not a series of

behaviors.

They're human beings.

And that's not acknowledged

in behavioral approaches.

It's really not.

And, you know,

behavioral conditioning has a

absolutely.

Of a history,

you know, and they talk about the

evidence behind behavioral

conditioning. And, yeah, let's draw

it to its root, which is,

you know, conversion therapy,

the root of behavioral

analysis.

Love is and his team

his team was also foundational

in queer conversion therapy

because that was a behavior they

didn't like.

And just the same way that queer

conversion therapy,

I shouldn't even call it therapy,

but queer conversion practices

the attempt to change a

queer person's behaviors

so they won't be queer any more, an

attempt to convince a person

through that, through

behaviorally controlling them,

that that they're not queer anymore.

You know, we've also got

autistic conversion practices, ABA

and behavioral conditioning and

behavioral intervention.

And these are practices

that aim to make autistic people

act like we're

not autistic. And that doesn't just

mean we're they're trying to make

us make eye contact.

It means they're trying to make us

act as though we are not

experiencing the world

the way that we are.

When you're in sensory overload, you

can act like you're not in sensory

overload, and that doesn't change

for a second. The fact that that's

what you are experiencing

and after a while that

adds up Again.

There are really horrifying studies

showing that autistic people are

considerably more likely to die

young, not just by

things like random

unexplained heart

conditions, but

also one

of our highest killers

is suicide.

And when we've asked autistic people

in research why, why

are so many of you suicidal?

What autistic people have

answered with is I am expected

to act like somebody else

all the time.

I can't do it.

I'm burnt out.

I'm tired.

I don't want to live here

if I have to act like someone else.

And we know this research has turned

this up countless times

and.

Will be called masking Lulu.

It is. It is.

This is commonly called masking

in autistic communities.

The the act of having to cover

yourself up and present a version

of yourself that isn't autistic,

that isn't quite you, that isn't

authentic.

And a lot of people look at this and

they say, Hey, I have to do that

too,

for work, or I have

to do that when I'm around people

that don't like me or whatever else.

And the reason that I, I, you

know, didn't

open by just trying to

explain it as as, you

know, covering yourself up is

because it's it's.

An attempt to make us change

from the outside in

and society.

The education systems

psychology these.

Institutions

have tried really hard to

make autistic people not autistic

anymore from the outside, in

the same worldwide institution

that certifies the

certified behavioral

specialists in Ontario.

That same international institution

also certifies the behavior analysts

at the Judge Rotenberg Center in

the States who are currently

administering electric shocks to

autistic children, mostly

black and brown children

who were never given the chance

to develop any accommodations or

any other type of of

life, and instead are in an

institution getting electric

shocks for their behavior

because that institution can't see

past behavior.

And this is why anyone

who's offering behaviorism and

behavioral intervention as a

solution for autism is

dangerous.

That's someone who doesn't

understand what autism is and what

autistic people need.

I'm going to give you another chance

to smash a misconception.

Yeah, one that I admittedly

needed to hear about,

and that's non-speaking autistic

people.

So a lot of the pushback

that I would hear

in terms of ABA

and self-advocacy

is that if basically

folks who can't speak,

can't advocate for themselves, and

so you and

other autistic people

who do.

Verbally communicate

or speaking over them.

And, you know, only their

caregivers really can

speak to their lived experience.

Yeah.

So let me tell you, this

is actually this

is a very common you're right.

Another common misconception.

And this is actually

something where I do believe a lot

of people need to grow their

understanding.

And this was true for myself as

well. I'm autistic.

My big brother is also autistic.

My big brother was one of the first

folks that was in

Voices who

in Ozzy's original

studies, when they realized autistic

people could also be gifted.

And both me and my brother are

Obviously I'm as I'm speaking.

The reason that's obvious is because

we don't have enough funding in

alternative communication to have

voices that actually

modulate the way mine does yet,

which is very unfortunate and

something I'll get into.

But yeah,

and this is something that even I

believed for a little while, which

is that, you know, not

non-speaking autistics,

they can't add to

the conversation themselves.

And so we have to listen to

the, the, the broadly

non-autistic parents around them.

And that's that's who knows best.

But that opinion of

that I also used to hold

got smashed pretty quickly when

I met non-speaking autistic

people myself.

And this is something that like,

you know, growing up,

I grew up in the same society

as the rest of you, where we devalue

disabled people, we

seriously devalue

disabled people who have been

labeled with things like severe

and low functioning

and profoundly disabled.

We immediately, as a

society, we decide

that life must be terrible,

that must be a low

down life because of those

labels. Those labels do something

to us. They impact how we feel

about the people they are used for.

And those are labels frequently

used for non-speaking autistic

people.

And that really gets in your head,

however.

Non-speaking autistic advocates

are absolutely

rocking

the advocacy world and the

world in general right now.

I'm at

the time of recording

this in the last week,

actually.

But maybe I'll just say recently,

recently a a

clip went viral

of Elizabeth Parker,

who is a non-speaking autistic

girl in the United

States who

was valedictorian of her class

this year and for her graduating

class in her her graduation speech,

which was delivered

by an AC

device, which is an alternative

and augmentative communication

device.

Her speech went viral and a lot of

people got to see it, and it

challenged a lot of people.

People really do not expect

a non-speaking autistic

person to have

competence.

And this is what non-speaking

advocates.

The very first lesson that I learned

from non-speaking autistic

advocates.

And this is folks like

Kal montgomery.

The very first lesson

is presume competence.

And this is something that we fail

to do as a society.

We fail to presume competence

in non-speaking autistics.

And what that leads to and

what that falls from

is these behavior ideas.

Because what non-speaking folks want

us to know

is that non-speaking

does not equal non thinking.

And it does not equal incapable.

But people do have this in their

heads that a non-speaking autistic

person doesn't

have mental capacity.

Or this other one, which is very

common, which is mental age.

People will say, Oh yeah, my oh,

my brother is 18, but he has the

mental age of eight or.

Whatever, mental capacity or.

Mental capacity of a six

year old.

And look,

these people are repeating what they

have been told by a

supposed medical professional.

The problem is that it matters

how they determined

that.

It matters how they decided.

This guy has a low IQ.

I don't know.

A lot of people are not

aware of this,

but IQ tests

are actually

entirely dependent on

motor capacity

and your motor coordination

because you need to be able to,

especially as a child, for

a child's IQ test,

you need to be able to point

to the word that the person said

or you need to be able to.

And I.

Right.

A particular word

or you might need to speak

out loud and repeat a

particular word or spell

a word out loud with your

with your voice.

And all of those are motor tasks.

Actually, those those

don't actually determine whether

somebody knows that thing.

It just determines whether they can

do the motor task to prove to you

that they know the thing.

Now, it's pretty basic and

obvious when when we lay it

out that way that these IQ tests

are not doing a good job

at measuring capacity,

they're just doing a good job at

measuring motor function.

And unfortunately, what that leads

to is people thinking that non

speakers are incapable.

I have a good friend

here in Ontario, an advocate who

works with the International

Association for Spelling

as Communication.

His name is William Tavares.

And William

grew up here in Ontario.

He's he's

he's only just starting high school

now.

And he grew up in behavior

classes and behavior programs

because he didn't speak,

because he didn't talk and because

when he was overwhelmed, he screamed

and hit and flailed his arms

and tried to get away from

the thing that was hurting him.

But nobody ever asked what

in this room is hurting you?

Before he could speak, before he had

a communication device.

Nobody went and brought him into

the room and pointed out different

parts of it and said, Is that

overwhelming to you?

Is that too much?

And let him give an affirmative

or negative answer that was never

provided.

What was provided was behavioral

intervention to change how he

was reacting to those stimulus

and how he was reacting to

not being able to share his opinions

and his feelings and his needs

because he didn't have a form of

communication.

Now, when William did get access

to communication and

this happens right now,

unfortunately, pretty much by luck,

when parents allow

themselves to be exposed to

other autistic advocates

and when parents allow themselves to

be exposed to non

speakers who have developed systems

of communication.

But when William was able to

access communication, he uses

spellings to communicate, which

means he has

managed to get enough motor training

so that he can spell words

out on a letter board

and his communication

partner goes ahead and writes

that down

or says it out loud.

If he's on a call

and this is a valid form

of communication.

Since finding that communication,

William's doing normal school

classes, he's able to actually

do the kind of work that is up

to his his the caliber

of his brain.

And a few years ago, he was still

getting toddler books read to him

because he wasn't able to outloud

read them back to the teacher

just over and over again

because they thought that repetition

was going to teach him, because

that's how behavior works.

When you do a behavior over and over

and over again, eventually

you're supposed to learn that that's

that's the right way of doing

things.

But unfortunately,

apraxia and dyspraxia

and other motor connection

coordination conditions

like William and a lot of non

speakers have aren't

behaviors, they're not

behavioral.

That's an actual physical

motor problem with the way that

the brain is sending signals.

And that's something that can be

worked through, but not by a

behavioral interventionist and

not by repetition.

You need an actual physical

therapist or a physio

or sometimes an occupational

therapist, but only if they've been

trained in kinesiology

because that's a motor problem.

That's a problem of the actual

physical connections.

But if non-speaking

kids are put into these behavioral

programs and

yeah, every once in a while they,

they learn how to perform a

behavior.

Absolutely.

Sometimes you can

hear stories from non speakers

who will talk about

behaviors and actions

that they learned how to perform

even though they weren't feeling

that way. And even though that's not

what they wanted to say

because they would get treated

better if they performed it.

And like, if that sounds cruel to

you, then it is because these are

children we're talking about,

not employees,

we're talking about children.

And these standards are imposed on

them. You know.

I think like when anybody looks at

it from even if they

can't understand autistic people,

I think a lot of people's empathy

rides, unfortunately, on being able

to understand why someone would be

upset by lights when they cannot

fathom that, you know, or

and so it stops like there's no

level of there's no attempt

to kind of, yeah, provide

accommodation or empathy without

fully understanding

why it seems so unreasonable.

Like when we see meltdowns and and

you know what I mean? Like that's

just seen as bad behavior often

and

it's just yeah, I,

I do appreciate you kind of doing so

much work in breaking

these stigmas and,

you know, trying to show people what

actual accommodation looks like,

what access to communication

looks like.

It's not all the same for everybody.

Yeah.

I want to just say I really

appreciate you bringing that up

because one of the one of the ways

that this kind of misinformation and

these kind of stigmas are

being perpetuated is that folks

aren't hearing these messages.

They're not hearing from the people

who are actually most impacted like

non speakers.

You know, the work that I do is is

all 100% informed by the

non-speaking autistic leaders

that I'm following.

I'm not you

know, I'm a I didn't

learn any of this by myself.

This comes from.

Folks that are living through

absolute hell because our society

believes that being non-speaking

is some kind of challenging

behavior.

And one of the things that

I've learned is, you

know, I promise I'll talk

more about advocacy in politics.

But as as

a researcher and as a

teacher and a student

at this time, I've actually been

really startled.

I did a I did a guest lecture

in a fourth

year like final year.

Disability studies are

a child and youth studies class.

And it was like the disability

issues class for senior child

and youth studies undergrads.

And I did a guest lecture and I

talked about how autistic kids

experience the world.

And I had a little

chart that had, you know, the

behavior on one side and then the

experience on the other side.

And so the behavior might

be, I

can't sit still.

And then the experience

might be I feel like there's

electricity going up and down my

legs. And if I don't run to get

it out, then I can't

think about anything else.

I feel like pain in my legs.

I'm cramping up now.

What am I supposed to do?

And I made this little chart and to

me that seems these things seemed

obvious, right?

Because I might just say this is how

I experience the world.

But to those students,

to those child and youth studies

students who are in their final

year, I had someone put up her hand

and say specifically,

I just want to say I've never

thought about it like that.

And that's horrifying to me that

for years through child abuse

studies, the children have not been

ask to the students have not been

asked.

How do you think the kid is

experiencing this situation?

They haven't sat down and thought

about it, and I really that

makes me worry.

And I think that's the same problem

in politics, is that these

people have never sat

and thought about, oh, how

might this experience be for

someone who has a different

brain than me, who has a different

nervous system, whose body reacts

to external stimulus differently

than mine.

And it's really hard sometimes to

put yourself in someone else's shoes

when you've never

had the opportunity to hear from

from people like that who've

you've never had access to the

resources.

So I don't I don't blame people that

don't have access to the resources.

But once you've been given those

resources and once you've been told

these children are not being

naughty, they're in pain

and they need accommodations, and

you still say

no, it's just a behavior problem.

That's cruelty, because

children are people, which is

something I shouldn't have to keep

reminding politicians, but I do.

People being able to communicate

like their experience.

Does it come naturally, though, to

especially when they're not

diagnosed?

Part of the reason there's such a

huge phenomenon of missed

diagnosis

and this is not just women and

trans folks.

This is also black kids

and indigenous kids and Asian

kids and

Latin American kids.

This is literally all over the

place.

The the sort of assessment

criteria

for for autism.

Is very much focused on

the white,

upper middle class boys,

little boys that they were studying

at the time when they developed that

criteria.

The actual criteria, like the

exclusion criteria for

the studies that they did to form

autism assessment criteria,

the exclusion criteria mandated

that only boys were included.

So there's actually

there's like.

Millions of autistic people

all over the world who are

unrecognized and unacknowledged

and trying to live through this

world which is designed not just

not for us, but actively

against us.

A lot of the time

and when you're not diagnosed,

you think you're just weak.

You think you're just not doing

things well enough.

I'm 100% sure that people are going

to listen to this podcast and

they're going to hear these traits

that I'm talking about and they're

going to hear the way that the world

is experienced by autistics and

they're going to say, Wait a minute.

Everybody doesn't feel that way.

Everybody doesn't go through crisis

because they are they are made to

look in people's eyeballs.

Maybe I might be autistic.

And that happens every time

I speak publicly.

Someone comes up to me afterwards

and says, I have been miserable

because I thought I was broken.

And it turns out I'm autistic.

And now I don't know what to do.

And normally the reason you

don't know what to do is because,

yeah, you don't have the

terminology.

You don't know how the systems work.

You don't know how the sensory

system works.

You weren't actually explained that

past what each of the five

senses are.

We were never taught sensory

regulation as kids.

You don't know how to explain it.

And that's one of the big problems

with not only, you know, undiagnosed

adults but children.

We go to children and we punish them

for behaving

distressed,

and we haven't taught them yet

what it means to emotionally

regulate what it means to regulate

your sensory system

in a plain language way that kids

can understand. That's just not

something that's done for how.

To accommodate themselves or how

great it is.

Absolutely.

Don't even know where to start to

feel better, you know, until,

you know, there is some sort of, I

think, intervention or I.

A lot of the stuff that you do is

building peer groups as well

and hanging out with other

neurodivergent people

and knowing how they,

you know, their accommodations,

their snooze rooms, their,

you know, and

that's that's really, you know, from

my personal experience that that was

really missing.

And I'm so glad you talk

about it the way that you do.

Oh,

well it's and that's the thing

that's important because so many

people have had to go without.

And that's just something that,

you know, you're going to get me

going. Sorry, That's just something.

Don't worry.

No, that's that's one of the really

big fears, is even the kids

that grow up knowing they're

autistic. And that's this is the big

thing. Another thing like everywhere

in disability issues, you see people

trying to split up into binaries.

You see people trying to say visible

and invisible disability.

You see people try to say mental

and physical disability.

You try to say all of these

different binaries. You try to say

high functioning and low functioning

and you try to bust stuff up.

And honestly,

even the people who are recognized

because they're still put into these

weird ass binaries that don't

fit the human experience,

they still actually don't get access

to the support they really need.

They just get told, you

know, oh, here's here's how you can

behave like other people do.

And that means that even even folks

that are recognized, you know, it's

not even undiagnosed and diagnosed

folks because diagnosed folks also

go without accommodation because

they're essentially told they're not

trying hard enough to not be

autistic anymore,

which is horrifying.

Who wants that anyway?

So I know

who would be terrible.

The world would be a lesser place.

But that's the thing of it.

And when when

we assume that

we understand

the experiences of somebody totally

different from ourselves, we often

miss out on stuff.

And that is what has happened with

autistic people and with

non-speaking autistic people,

especially when I started actually

hanging out with non-speaking

autistic people,

I, I still had this idea

in my head of like, well,

you know, I don't have

things like as bad as non

speakers. And so, you

know, maybe I maybe I am mild,

but I hang out with non-speaking

people and I

have more in common with them

when they explain their experiences.

When I get to read, I have a

book of poetry here by Hannah

Emerson, who is an absolutely

phenomenal non-speaking

poet.

Hannah Emerson's book is called The

Kissing of Kissing.

And when I read her poems,

when I see

folks like William, who

I talked about earlier, William.

Suarez, who

puts together these essays

and poetry and

this incredible connective.

Communication.

I have more in common with that

than I do with the average

non-autistic person that I have to

go talk to at a

school event or a party.

I can't connect with those people

the way I can connect with non

speakers and

the way that the autistic brain

works is not more

or less. It's not one way or

the other.

They've actually done

neurological studies where they've

tried to say, Oh, what does the

autistic brain look like?

What does a severely autistic

brain look like?

And what they found was that there

is no one autistic

brain. There is a non

autistic brain.

They had a neurotypical control

group and their brains all mostly

function the same. They followed the

same patterns as each other,

but autistic people's brains.

There was no one pattern.

Everyone's brain was doing something

divergent, something different.

And that's what we have in

connection with each other.

And that's why we can understand

each other. And that's why peer

support is so important.

Because somebody with a brain that

does that, the typical wiring

does not understand what

life is like for someone whose brain

does not do that typical wiring

and does not follow those typical

paths.

And you're 100% right.

Peer support is a huge

part of what I do

in my spare time and my advocacy,

but it's also what I really advocate

for for autistic kids,

especially autistic kids

who are struggling.

With.

Things like institutional schools

and things like families

that don't understand them.

Let's talk a bit about your

advocacy. Right.

A lot of folks tuning in are

advocates themselves, and

we talk about like

a diverse amount

of tactics and the need to diversify

our tactics. And not everybody kind

of goes that at tackling the status

quo the same way.

But when I look at the stuff

that you do,

not just single handedly,

but the stuff that you've shared

with me, from non-Autistic

Poetry Night to

your NDE and DP

Group.

You seem to use all the tactics.

Well, a lot of them.

Which one brings you the most joy,

though, Lulu?

Community building.

Community building brings me the

most joy. And in my opinion,

it has been the most.

Impactful work that

I've done.

The fact that I have been able to

bring Neurodivergent

folks together

who otherwise would not ever

have met and

I have been able to get them into

rooms where they

can share their experiences

in whatever communication

method works for them,

where they are not feeling pressured

to speak out loud, where they are

not feeling pressured to put their

cameras on, and all of these things.

And the fact that I have managed to

get folks into rooms and that

they've become friends

and that now they have that person

that they can hang

out with, that person they can talk

to that person, they can comment

on their Facebook status

when they're sick.

That.

The fact that, yeah, the

fact that as humans, we're

capable of bringing other humans

together and

building communities.

I am 100%

swept away whenever we have

events and and meetings

and things like this.

You mentioned that in the NDP,

that's the Neurodivergent NDP.

So that's a group of

volunteers and advocates

and allies

and NDP members

and folks that really want to see

neurodivergent issues

advanced on and progressed

on. Because right now,

unfortunately, progressive parties

like the NDP, who

are progressive in many other ways,

are still living.

You know, in in the past

when it comes to things like autism

and mental health

and when all of your solutions to

neurological and psychological

conditions are behavioral,

you're really missing the point of

the problem, right?

You're not actually getting to the

root of what's going

on and what people are experiencing

and slapping Band-Aids on

on wounds, you know, without

actually closing them, as we know,

does not help, does not work,

and actually leads to a huge

potential for like

serious infection and serious

harm that gets in because

you didn't do what you needed to

do to begin with.

And so

with the narrative in NDP,

we actually formed because

a number of Neurodivergent

NDP members

and advocates

were essentially just tired of

hearing the same old, you know,

stigmatizing language and

bizarre, archaic, supposed

solutions to

the quote unquote autism file.

And this is one of the things that

I find very dehumanizing is the

way that autistic

kids are talked about by

politicians,

that there's a movement

of calling saying that autistic

children who are not being

behaviorally modified are

and I quote, languishing

away.

This is the kind of language they

use to describe

children who are reacting

to the world around them, which is

not built for them.

And it's it's just really

horrifying. They really painted as

some kind of like like epidemic.

You know, we have an actual plague

going on, but it's autistic

children that get treated like

they're some kind of contagion or

something like this.

And that is really unfortunate.

And so a number of

us got together and

I have to give a shout out to folks

like Kamal Ahmed and Spencer

Gallup, who are a couple of the

first folks that really

inspired me and

like uplifted me and made

me believe that we could actually do

something together. So I'm going to

cry because we actually have done

something together.

We've done something really amazing.

I had to also shout out to Eric,

Eric, Eddie, which is my my partner,

who's also done a phenomenal amount

of work with the and the NDP.

But what we've created is actually

this group of people who

share experiences and

share challenges and share struggles

and are able to organize

about it and are able able to

support each other as we try

to fight back.

And there's something just really

moving about it when,

you know, whenever, whenever we

actually get to do something,

whenever, whenever I get

to hear another neurodivergent

person say, Thank God you guys are

doing this or or whatever

else, it it is

completely mind

blowing that we've able

we've been able to make that space

and to take that space up

and to and to keep fighting,

especially in the face of huge

industries like

the like the behavioral intervention

industry.

It is really against the

interests of that industry

for neurodivergent people to

start talking to

each other and to start getting

connected and to start saying,

actually we don't have to

let this happen to kids

like us. We don't have to let this

happen to our community

and to actually start fighting back

against it. And now we've connected

with folks in every province.

We've connected with folks all

over this

colonial wreck of a planet.

And, you know, we've also connected

with neurodivergent

political groups like

the Neurodivergent Labor in

the UK and Neurodivergent

Labor in Australia, Labor

in Australia, of course,

having just formed government

in the recent election and the

Secretary of.

Labor. Australia

of the party is ADHD

openly and is part of

of neurodivergent Labor.

And the fact that there's stuff like

that worldwide and that we're,

you know, following in the footsteps

of these people that are doing such

amazing work and that we're going to

get that done here in Canada too.

It's absolutely wonderful

and it's hard.

It's not easy to fight,

you know, your own people.

It's not easy to have to say,

look, you guys, I know

you care.

I know that you believe the things

you do about autism because you

care.

But those things are wrong and

we need to do better.

It's not easy work.

People don't want to hear that.

People don't want to hear they've

been wrong about something that has

felt so virtuous to them, has felt

so good and so pure

for them. Oh, I'm just supporting

autistic children.

So when I come in and I have to tell

them, okay, it matters how

it matters, what support, it

matters. Because if

if that quote unquote, therapy

is somebody who actually sees this

kid as a series of behaviors,

you know, there are behavioral

intervention people, their names,

their title is behavior

technician.

These are people who are exposed to

three year olds for

sometimes 6 hours a day, five

days a week.

Behavioral technicians, they're

there to.

I don't know.

Make your robot child

act the way it's supposed to.

And that's that's scary stuff.

And the fact that support

for that often comes from what is

the left, what is supposed to be the

progressive side of politics?

Yeah, it's it's awful.

It feels terrible.

But let me tell you, it feels a

lot less terrible when you're

in a group of other neurodivergent

people who are ready to fight back

and support each other, not

just in political fights, but in

personal ones, in making

sure people you're you're getting

the medical care that you need and

the supplies that you need and

making sure that you're being taken

care of when disasters have struck.

And when you have that group of

people that are that are ready to

in the long haul, because this is

a long term fight.

And so being able to actually build

community like that means

everything, I

think, not just to me, but to

everybody within the NDA.

It's it means quite a lot

that we're able to do it.

So a lot of a lot

of the activists I've talked to

speak of building communities, I

think that's kind of pivotal to a

lot of to organizing

personally, Right?

Is first job is

bringing people together and making

sure your spaces are safe and,

you know, protecting them

and so folks

can grow and share and fight.

But I imagine

in our work as organizers

on the left, that perhaps sometimes

we're making spaces that aren't all

that friendly to autistic people.

Is there some things that

a lot of us are?

You know, I was in a

meeting the other day and very

progressive folks, but

there was just this huge

encouragement to turn on your

camera. You had to turn on your

camera. It was kind of like you

weren't really participating.

And immediately I thought

of how uncomfortable

that would make me on certain days.

And so I felt forced to turn my

camera on.

But, you know,

things like that, are there

are there practical things that

we could do better as organizers

so that our spaces are

more accommodating?

Well, that's an excellent example

for sure, making sure people don't

have to turn cameras on.

Partially because

my experience is

different than some people's in that

I'm actually pretty comfortable

being on a zoom and just like not

looking at either myself

or the other person

because I've I

am really bad at things like eye

contact and facial

like on my moderating my face.

I'm just not good at that

because it takes so much motor

energy that then I can't pay

attention to other stuff

and.

The other thing is being able to

like stim.

So a lot of autistic people will

flap our hands or things

like this or we'll rock back and

forth.

People in meetings will all the time

see me rocking back and forth

and things like this are seen

as like disruptive or inpatient

or things like this.

And for that reason, a lot of people

would prefer to just not have their

camera on because that's something

they really have to worry about.

So that's a good example.

Another example, um,

inviting autistic

people

somewhere or sending

like a attempting

to reach out to autistic

people.

When you have,

uh,

when you have taken the words

of non autistic

autism advocates as

fact.

So this is something that people on

the left do a lot is

they hear a parent group

or something that's called

an advocacy group

say something and

they will repeat it

without

critically thinking about it and

without looking into it and

seeing how the people most impacted

actually feel.

And now this is the true across

cases. They're like books

by white people about

white fragility, for example,

which is like, okay, yeah, for sure.

Why? Why would I listen to a white

person about that, though?

Because that's not

that's not something a white person

is actually going to be the best

source for. And so that's not

something I'm going to do. I'm going