My brother is autistic | Royan Lee | TEDxKitchenerED

Summary

The speaker recounts his journey with his autistic brother and their family dog, Muffin, highlighting the challenges and joys of living with neurodiversity. He discusses societal perceptions of 'normalcy' and the importance of embracing differences. Through personal growth and advocating for his brother, he discovers the strength in being 'weird' and the value of neurodiversity in shaping our world.

Takeaways

• 🐕 The speaker's childhood desire for a dog led to the adoption of a mischievous pet named Muffin.
• 👨‍👩‍👦‍👦 The family struggled with the care of their pet and their autistic brother, highlighting the challenges of raising a child with special needs.
• 🌐 The parents' immigrant background and the societal stigma around disabilities added to the family's difficulties.
• 🏃‍♂️ Muffin the dog played a crucial role in keeping the brother safe by chasing after him when he ran away.
• 🌟 The speaker's journey of self-discovery through travel and work abroad led to personal growth and a new perspective on life.
• 👨‍👧 The birth of the speaker's daughter and the challenges of parenthood added another layer of complexity to his life experiences.
• 📚 The pursuit of academic scholarship and critical pedagogy provided the speaker with tools to better understand and support his brother.
• 🤝 The return to Toronto to support his family was marked by difficulties and the realization of the systemic inadequacies in disability support.
• 💪 The speaker learned the importance of perseverance and advocacy when seeking support for his brother's needs.
• 🧠 Embracing neurodiversity and recognizing the unique strengths in individuals with special needs can lead to a more inclusive and equitable society.
• 🌱 The speaker's brother taught him valuable lessons about kindness, determination, and the importance of genuine communication.

Q & A

What was the narrator's childhood dream?

The narrator's childhood dream was to have a pet dog, specifically an intellectual canine like Snoopy from the Peanuts comic books.

How did the narrator's family acquire the dog, Muffin?

The family got Muffin from PJ's pet store in the mall after the narrator's persistent requests and tantrums.

What were some of Muffin's undesirable behaviors?

Muffin would bite people on a whim, yap incessantly, and treat their home as her personal toilet.

How did Muffin help the family with the narrator's brother?

Muffin was instrumental in helping the family by chasing after the narrator's brother whenever he ran away, effectively bringing him back home.

What challenges did the narrator's brother face?

The narrator's brother was diagnosed with pervasive developmental disorder and later as autistic. He faced difficulties in social interaction and communication.

What was the narrator's initial reaction to his brother's condition?

Initially, the narrator felt burdened by his brother's condition and wished for him to be 'normal'.

How did the narrator's perspective on his brother change over time?

Over time, the narrator's perspective changed as he began to appreciate his brother's unique qualities, such as his kindness, determination, and the wisdom he offered about social norms and communication.

What is the significance of the term 'neurodiversity' in the narrator's story?

The term 'neurodiversity' signifies the recognition and appreciation of neurological differences, such as autism, as natural variations with distinctive strengths, rather than deficits.

What lesson did the narrator learn about advocating for his brother?

The narrator learned not to take 'no' for an answer and to be persistent in advocating for his brother's needs, even when faced with bureaucratic obstacles.

How did the narrator's experiences abroad influence his views on education and family?

The narrator's experiences abroad led to personal growth and a newfound passion for education. He also gained a deeper appreciation for his family's struggles and his brother's unique qualities.

What message does the narrator convey about embracing differences?

The narrator encourages embracing differences and letting go of the pursuit of 'normal', suggesting that the world is better when we acknowledge and value the diverse ways people use their brains.

Outlines

00:00

🐾 Childhood Wishes and the Arrival of Muffin

The speaker reminisces about their childhood desire for a pet dog, inspired by the comic character Snoopy. They read extensively about dogs and eventually convinced their parents to get a dog named Muffin. However, Muffin turned out to be a challenging pet, exhibiting undesirable behaviors. Despite this, the speaker reflects on the positive aspects Muffin brought to their family, particularly in relation to their autistic brother. Muffin's ability to track and protect the brother, who had a tendency to run away, is highlighted as a valuable and unexpected contribution to the family.

05:01

🌟 Challenging Perceptions of Special Education

The speaker addresses the negative connotations associated with special education and the language used to describe it. They argue against the common discourse that implies pity or martyrdom in educating children with special needs. The speaker suggests that educators and parents should view their roles as empowering and normal, rather than as extraordinary acts. They also discuss societal stigmas around disability and the rarity of encounters with differently-abled individuals, using personal experiences to illustrate the challenges faced by their autistic brother as he grew older and less 'cute' to society's eyes.

10:04

🌍 Personal Growth and the Impact of Travel

The speaker shares their journey of self-discovery through global work and travel, which led to personal growth and a better understanding of themselves. They met their future wife, became a citizen of another country, and started a family. This period of their life was marked by significant positive changes, including a newfound passion for teaching and pedagogy. The speaker also reflects on the guilt of leaving their family during a challenging time but recognizes the necessity of self-improvement for being able to support others effectively.

15:05

❄️ Returning Home and Facing New Challenges

Upon returning to Toronto, the speaker faces a stark contrast to their life abroad, with the harsh winter and the difficult state of their family's health and finances. Their brother, who was once a source of joy, had become unrecognizable—physically large, angry, and unstable. The speaker grapples with the reality of their brother's changed behavior and the emotional turmoil it causes. They also describe the demoralizing process of navigating the complex disability support system, learning to be persistent and proactive in seeking help and resources.

20:06

🌈 Embracing Neurodiversity and Redefining 'Normal'

The speaker advocates for a shift in perspective towards neurodiversity, appreciating the unique strengths and contributions of individuals like their brother. They encourage letting go of the pursuit of 'normal' and embracing the diverse ways people use their brains. The speaker shares lessons learned from their brother about kindness, determination, and the importance of reciprocal communication. They conclude by expressing gratitude for how their brother has enriched their life as an educator, father, and husband, and for the audience's attention to their story.

Keywords

💡Neurodiversity

Neurodiversity refers to the idea that neurological differences, including those labeled as disorders, are natural variations in human cognition and behavior. It challenges the notion of a standard or 'normal' brain, advocating for the acceptance and celebration of diverse neurological traits. In the script, the speaker's brother is described as having a condition that, under a neurodiversity framework, is seen as a unique contribution to the evolution of technology and culture, rather than a deficit.

💡Pervasive Developmental Disorder

Pervasive Developmental Disorder (PDD) is a term that was used in older classifications of mental health disorders to describe a group of conditions that affect a person's social interaction and communication skills. The speaker mentions that his brother was initially diagnosed with PDD, highlighting the historical context and the shift towards more specific diagnoses like autism, which is more commonly used today.

💡Autism

Autism, or Autism Spectrum Disorder (ASD), is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviors. The speaker's brother is described as being on the autism spectrum, which is a central theme of the video as it explores the challenges and the unique strengths that come with being neurodivergent.

💡Special Education

Special Education is an educational approach tailored to meet the unique needs of students with disabilities or learning difficulties. The speaker critiques the term 'special education' and the discourse around it, suggesting that it can inadvertently stigmatize and marginalize students, rather than recognizing their diverse strengths and abilities.

💡Stigma

Stigma refers to the negative attitudes and discrimination that people may face because of their perceived differences or conditions. The script discusses the stigma associated with being differently-abled, illustrating how societal attitudes can lead to exclusion and a lack of understanding, which the speaker aims to challenge.

💡Neurotypical

Neurotypical is a term used to describe individuals who do not have neurological conditions that are considered atypical, such as autism or ADHD. The speaker contrasts the experiences of his neurodivergent brother with those of neurotypical individuals, emphasizing the need to move away from a neurotypical-centric view of 'normal'.

💡Inequity

Inequity refers to unfairness or injustice, often in the distribution of resources or opportunities. The speaker reflects on the inequities faced by his brother and others with disabilities, highlighting systemic barriers and the need for societal change to create a more inclusive world.

💡Embracing Differences

Embracing differences is a core theme of the video, advocating for the acceptance and celebration of people's unique traits and abilities, rather than trying to fit everyone into a narrow definition of 'normal'. The speaker shares personal stories and insights to encourage viewers to value diversity and challenge conventional norms.

💡Support System

A support system refers to the network of resources and individuals that provide assistance and care for those with special needs. The script describes the struggles the speaker's family faced in finding adequate support for his brother, emphasizing the importance of robust and accessible support systems for individuals with disabilities.

💡Self-Advocacy

Self-advocacy is the act of speaking up for oneself, especially in the context of one's needs and rights. The speaker shares his journey of learning to be a more effective advocate for his brother, illustrating the importance of persistence and assertiveness in navigating systems and services for individuals with disabilities.

💡Personal Growth

Personal growth refers to the process of self-improvement and development, often through experiences and challenges. The speaker's narrative includes his own journey of personal growth, as he learns to better understand and support his brother, and how this has enriched his life as an educator, father, and husband.

Highlights

The narrator's childhood dream of having a pet dog like Snoopy from the Peanuts comic books.

The family's acquisition of a pet dog named Muffin, who turned out to be quite unruly.

Muffin's unexpected role as a guardian, helping to keep the narrator's autistic brother safe.

The challenges faced by the family due to the narrator's brother's pervasive developmental disorder.

The cultural and socioeconomic background of the family, immigrating from pre-Samsung South Korea.

The narrator's personal struggle with his brother's condition and the desire for 'normalcy'.

The narrator's journey of self-discovery through global work and travel.

The realization of the importance of not waiting for someone with special needs to become 'normal'.

The stigma and lack of encounters with differently-abled individuals in society.

The narrator's experience as a special educator and the impact on his perspective of special education.

The importance of language and narrative in shaping perceptions of disability.

The narrator's return to Toronto to support his family during a time of crisis.

The difficulties faced by the family in navigating the disability support system.

The narrator's brother's transformation and the emotional impact on the family.

The concept of neurodiversity and its significance in understanding and accepting different cognitive variations.

The narrator's personal growth and the lessons learned from his brother about kindness, determination, and communication.

The call to action for embracing diversity and letting go of the pursuit of 'normal'.

Transcripts

when I was in elementary school I badly

wanted a pet dog like many kids I dreamt

of having a hyper intellectual canine

like Snoopy whenever I read those

peanuts comic books I went to the

library and read every book that I could

find about dogs from cover to cover like

many children have done over generations

I used every persuasive tactic I could

think of to try and get my parents to

get me that dog pretty soon my request

devolved into embarrassing tantrums but

guess what it worked one day we went to

PJ's pet store in the mall and got

ourself a little white fluffy dog we

christened her muffin

muffin was a terrible dog she would bite

people on a whim Yap like a horrible

electronic wind-up toy and treat our

entire home as her own personal toilet

it seemed like a big mistake to get

muffin the truth is though that muffin

was not the problem

it was us who was incompetent completely

unprepared to take care of a dog in fact

we had so much to be thankful for in her

you see my brother he's always been

differently abled he's been diagnosed as

having pervasive developmental disorder

by a doctor that perhaps hasn't

read any psychiatric literature in

decades and then finally autistic my

mother and father had a hard time with

them as you can imagine when you have a

child with a disability it's hard at the

best of times but when that challenge

intersects with all manner of

under-privileged you can feel hopeless

at the best of times or just numb at the

worst my parents grew up in pre Samsung

South Korea

and

they they both stopped going to school

sometime before puberty and they came to

this land like millions of others to try

and find a better life for their

children to find that American or

Canadian dream to this day even after

living in Toronto for over four decades

my mom speaks English with great if not

charming difficulty and I don't see my

dad much because he has issues of his

own which are starkly similar to my

brothers when he was young by far the

most difficult thing about living with

him was that he was a runner if there

was a crack in the door he was off with

the speed of light a little hint of

daylight like road runner an open road

or a sidewalk like Forrest Gump in race

mode that's where muffin comes in she

was like a superhero any time he took

off

usually unbeknownst to us she would be

after him like a homing missile I want

you to visualize a chubby little Asian

boy in various states of dress running

past the window of your house as you're

having a cup of tea and I can see that

you are appreciating that both the

hilarity and also the tragedy of that

but what was great about Martin was that

she would be relentless in trying to

grab a vice grip on the butt of his

pants to drag him home

it wasn't an Instagram era so I don't

have many photos and video loved it

well this is the best I can do

it actually looked a lot like that but

my talk today is not about dogs and how

wonderful they are even though they are

I want to talk to you today about people

and how marvelously weird they are I'm

gonna talk to you today about things all

of you can relate to growing up in a

bizarre family teaching strange children

and why the adjectives I'm using right

now should be considered strengths and

positives that we can recognize and

leverage rather than to stamp out and

fix I want to talk to you today about

how much better the world is when we let

go of our inequitable and fruitless

pursuit of normal and instead embrace

the many different ways that people use

their brains so let's start with this

thing we call special education if

you're an educator in the audience I ask

you how many times you've heard uttered

or thought this phrase before

don't worry you don't have to feel

guilty I know even as a special educator

myself I've said it or thought it many

times it's such a common discourse in

education that we are rarely admonished

for it but to elucidate how destructive

this sort of narrative might be let's

compare it to other instances where we

use this mentality

you've probably my apologies to

Nickelback fans out there don't worry

we've all enjoyed a Nickelback song come

on let's face it and how about these

terms I know they seem far less

offensive but I feel that sometimes

implicit meaning can be more sinister

than explicit ones when we say I don't

know how you do it or she's a saint

we don't seem to mean it exactly in the

same manner in which we say it to an

olympic swimmer or somebody who works as

an emergency room surgeon educators and

parents of kids with special needs don't

need a discourse around their work which

posits pity as praise or depicts

everything they do as either an act of

martyrdom or an act of dropping out of

that martyrdom when we say how do you

even deal with that it seems like we are

suggesting that working with some of the

most marginalized people in our society

is inherently an undesirable task

shouldn't we all just consider ourselves

educators and even parents of kids with

special complex diverse needs instead of

just leaving it to a small cadre of

noble individuals going that extra mile

of course this narrative is only

reflective of the greater society in

which we live

everywhere we go we inflame the stigma

around being differently abled for

instance going by numbers such as these

you would think that your encounters

with people that were different or

special would be fairly common not that

it's always visible of course but I ask

you how many times do you feel like you

have these encounters with people like

my brother at work

in your office walking the dog or

waiting in line for your skinny cinnamon

Dolce latte let me connect this back to

my own experience again of being a

brother of an autistic it was as he was

reaching the later years of elementary

school that my brother started to become

someone we didn't necessarily want to

showcase out in the world before that

when he was younger running through the

streets with a foot white fluffy dog on

his tail it was like people gave him a

pass for being a little too jovial

strange and a bit quirky as he became

older and not as cute it's like his

personality became more of a behavior

problem with regret deep in my heart I

remember thinking to myself why can't my

brother be normal the little boy that I

used to cuddle and wrestle with who I

used to sing songs with now felt a bit

more like a burden I always used to

wonder these things and it was around

that time perhaps not coincidentally

that I was having my own existential

crises deciding that global work and

travel would be my only way out of these

troubles although there's a part of me

that feels guilty for leaving my family

at a time when they needed me most I

realize in retrospect that it was the

best thing for everyone involved

the old adage which states that you

can't help someone unless you help your

own self

really rings true for me here there was

no way that I was going to be able to

support anybody if I didn't sort out my

own ship

so my adventure is working and traveling

abroad culminated and some great things

meeting the woman of my dreams becoming

a citizen of a different country in both

the literal and metaphorical sense and

starting my own family I was one of

those it's a cliche to say this but who

truly found themselves traveling the

world the growth I experienced and my

self-awareness and efficacy was

exponential to use the most understated

term I just became a significantly

better version of myself and one of the

ways I did that was by putting myself

out there sharing my stories being as

open as I could even though even when it

resulted in negative situations that

allowed serendipity to really help my

life I had no idea for instance that I

would end up a teacher with a passion

for pedagogy and connected so deeply to

my own personal experience I didn't know

that my first teaching job would have a

boy in the class with almost the exact

same learner profile as my brother so

many weird things like this happen so

six years passed while I was overseas

and things were not well with my family

their health and finances were in a

risky State and my brother was ending

his run with public schooling an ominous

time for many families which with the

child with complex needs strangely in

contrast I was thriving overseas I was

honored to receive academic scholarship

to pursue my studies in critical

pedagogy so a newfound passion of mine

at the time I'd become a family of my

own as I stayed it

my wife and I had created a most

beautiful creature she was most

certainly the apple of my eye if not a

bruised one as she was very difficult to

care for very very colicky

but our challenges as first-time young

incompetent parents were nothing

compared to what was going on in my

first home of the great white north

every time I called home I would feel

pangs of regret electrocuting me through

the phone line for now my great life

overseas had to be put on hold my loving

wife agreed to come support me and

coming back home to Toronto from the

moment we stepped off the plane from the

height of southern hemisphere tropical

summer to the depths of Toronto in

January things got very difficult it was

winter and as they say we were

discontented my brother was

unrecognizable to me he was physically

massive angry and unstable the boy with

the light beaming out of his eyes that I

knew as a child was replaced with a

thousand-yard almost lobotomized stare I

was always the one who could make my

brother happy by singing him the theme

song from sonic hedgehog video game or

talking about the Toronto Blue Jays but

now he acted like I was a stranger to

him I'll never forget the day when he

ran up to my one-year-old daughter and

pushed her to the ground

utterly perturbed by something only he

himself could understand I remember

having to get physical with them and

wondering to myself am I gonna have to

fight my brother today

I have to fight him everyday being so

stunned and angered by this incident I

just didn't know what to do I felt

helpless I was searching everything that

I could under Google with the terms

Ontario disability supports funding the

process was like trying to herd puppies

in a snowstorm I was going from one

voicemail to another completely unaware

of what the best strategy was I would

talk to one person they would tell me to

go to that person that person will tell

me to go to another organisation and

then I'd end up after several other

moments of passing the buck talking to

the same person I started with it was

and often still is very demoralizing but

that's when I learned the first lesson

of supporting and caring for somebody

with with special and complex needs

don't take no for an answer

I learned that if somebody says oh yes

we will get back to you then I'd have to

call back the very next day and stop

listening to that part of our brain that

tells us oh you might be annoying or you

might be rude if I if somebody said

they've got to get back to me in a week

I would call back them back the very

next day I also learned something else I

had to stop feeling sorry for myself I

had to stop waiting for the day when my

brother would be normal I had to stop

waiting for him to be fixed like a car

that wouldn't start I had to stop

wishing that he would come out with me

and have a beer and talk about things

men are supposed to talk about basically

I stopped wishing he would become

something

was not I realized that my brother has

so much to offer the world

I realized that he was so kind and that

he only knew how to be kind I realized

that it was just that he was flummoxed

as to how to get love reciprocated I

realized how determined he was in stoic

and greedy as they say and that he never

thought selfish attention like many of

us do you I also realized that when he

understands the context when you can

figure out what is going on around him

that he's more dependable reliable than

many people that you know and I started

to appreciate how much strength and

wisdom my brother was sharing with me

he's my constant reminder that social

norms that we have in the world are just

that socially constructed concepts that

vary from context to context and evolve

over time he's also there to remind me

that the world even though we've made so

much progress is still an inequitable

place it's still exclusive my brother

also reminds me that communication isn't

something that happens just because you

tell someone something or you email them

a message or write it in a memo it's

when messages are sent and received and

reciprocated

he's also taught me so much to explore

this great new concept and movement

called neurodiversity

as Steve Silberman states in his mind

opening book neuro tribes conditions

like autism dyslexia and intention

deficit hyperactive hyperactivity

disorder should be regarded as naturally

occurring cognitive variations with

distinctive strengths that have

contributed to the evolution of

Technology and culture rather than a

checklist of deficits and dysfunctions

so I want you to think of people like my

brother that you know and Rhea and try

and go a place where I am now where I

appreciate weird much more over normal

i've disavowed my pursuit of it because

when we try and hold that concept in our

hands like so many granules of sand it's

so much more liberating to just let that

stand go and trust me the beach is much

more beautiful when you do so I'm so

thankful to my brother for making me a

better educator and a better dad and

husband

my main vocations in life and I'm

thankful to all of you for listening to

my story today thank you