Translator: Tanya Cushman
Reviewer: Rhonda Jacobs Everyone in this room has a unique voice - something about you
that is different from others. And I want you to take a moment
to think about what that difference is. Some of you can teach; some of you can create
amazing pieces of art; some of you can solve
mathematical problems with ease, while others can care for
and nurture others unconditionally. Now, I want you to imagine
what it would be like if for your entire life, you had no idea that difference existed. There is a group of people
whose unique voice, whose very diversity, is so well hidden that it's invisible,
even to themselves. I was one of those people. I am autistic, and I had no idea until
I was diagnosed at the age of 35. Autism is a condition that affects
how a person communicates, how they relate to people, and how they experience
the world around them. Autistic people see,
hear, and feel the world differently [than] non-autistic people. And while no two
autistic people are the same, we do share common traits, such as how we communicate, how we are able
to plan and carry out tasks. The level of difficulty
a person has with these traits will shape where they fit on the spectrum. Now, a lot of people think
the autistic spectrum is a straight line with severe autism at one end
and mild autism at the other, but it's not like that at all. Autism is like a kaleidoscope of colors, like that color wheel on your computer where all the colors
blend into one another. So let's have a look
at these autistic traits. We have sensory issues. That's how you see, hear, and feel. So an autistic person
may have amazing hearing, and they may be able to pick out
minute details other people can't see. Autistic people are fantastic
at finding "Where's Wally," but they may struggle
to process audible sounds. We have social communication. That's how we communicate and how we understand
how other people communicate. It involves things like understanding
body language, sarcasm, and humor. Autistic people can take
things very literally. So a saying such as
"He wears his heart on his sleeve" may be very difficult
for an autistic person to understand because how can the human heart
exist outside of the body, never mind on the sleeve of a shirt? We have executive function. Now, that's our ability to plan,
to organize our time and space, and to carry out tasks. So an autistic person
with poor executive function may struggle to complete tasks, they may struggle to organize
their space around them, and they may have difficulty
with poor time-keeping. We have repetitive behaviors. Now, this involves things like the level
of interest we have in something. So the cliche is the autistic
person who loves trains. One of my special interests
is the TV show "Friends." I've listened to it
every single night for 15 years, and I know every episode inside out. I can name every episode, and I can tell you who said what line
and what episode it came from. And finally, we have stimming, and that's using self-soothing behaviors to calm ourselves, to communicate,
and to process information. In autism, we also have
these labels, which I hate, and they are "high-functioning"
and "low-functioning," and the reason I don't like them is because they're misunderstood
and they're misused a lot. People assume that high-functioning
means that your autism is mild, when, in fact, high-functioning
simply means that your IQ is above 70. It's also often used to describe
an autistic person who can speak. Low-functioning being the opposite,
with an IQ below 70, and is often used to describe an autistic
person who can't communicate with speech. But the truth is
somebody can have a low IQ, and they may not communicate by speech, but they may or may not be
massively affected by their autism. Equally, I am high-functioning,
but my autism is not mild. So what is autism like to live with? For me, autism is all about anxiety. It's about intense emotions, and it's about living with a brain that does everything it can
to control my world around me. People assume that autistic people
don't feel emotion. But the truth is, for many of us,
we feel it intensely - I'm talking 200, 300,
even 400% stronger than other people - and to make matters worse,
I can't identify emotion. So I can feel it intensely,
but I can't name it. I don't have the language
to describe emotion, so I may say "my stomach feels squiggly," and I could be describing anxiety; or I could say that my head
feels tired and slow and heavy, and I could be describing
sadness or depression, but I wouldn't know. Living with intense emotions
and not being able to identify them means living in a world of utter chaos. So to keep myself safe,
I have strict routines: I get up at 9:00 in the morning
and I have a cup of coffee. I then settle down
to do a few hours of work, and I'll have another cup of coffee
at 1:00 in the afternoon. I'll watch one hour of TV,
do some more work, and at 5:00 I stop
and I settle down for the evening. But if I've got family coming to visit,
that routine is going to be disrupted, and so in the days
leading up to them arriving, my anxiety builds and builds and builds, and I start struggling
with intense emotions I can't identify, and eventually my brain crashes,
much like a computer; it cannot cope. Everything stops. I can't speak; I can't hear;
I can't respond. I am having a full-blown meltdown,
and there's nothing I can do. I am on the floor; I'm rocking, I'm crying,
I'm biting myself, and I'm hitting myself, and I can't stop it. People assume that a meltdown
is like a child having a tantrum, but the truth is for an autistic person a meltdown is something that
you can't control, and you can't stop it. It is like having a seizure;
you're semi-aware it's happening, but there's nothing you can do
other than ride it out. So I ride it out. And I wait. And when it finally ends,
I'm exhausted and all I can do is sleep. And while I'm sleeping,
my brain is resetting itself. That computer inside my head is rebooting, and it's resetting my emotions,
my ability to function, and my thoughts. Autism is like living
with everything on full-blast. There's a film called "Spinal Tap," and in this film,
the guitarist has an amp, and his volume dial
doesn't just go to number 10, it goes all the way up to a number 11. And there's this joke that
"Why don't they just make 10 louder?" And the guitarist says,
"Because 11 is louder." Autism is like living with a dial
that goes all the way up to 11 when everybody else's just goes to 10. So noise physically hurts me. If I'm in a coffee shop, I can't hear
the person I'm with talking to me because I can hear the coffee grinder, I can hear the milk frother, I can hear this man over here talking, and I can this hear this lady
having a conversation on a telephone. I can hear the cars traveling outside. I can even hear the light buzzing and sometimes I can even hear
the air moving around the room. I live in constant noise,
and that dial is all the way up to 11. Similarly, a nice sunny day for you
can be blinding for me, and there are certain colors
and patterns that are excruciating. But that dial can also go down
into negative numbers. Earlier, I described executive function and how that's our ability to plan,
to organize, and carry out tasks. My executive function is terrible. It takes me about two hours
to settle down to do some work, and then I'm up and down all day
with distractions. I suffer from intense procrastination; I need a lot of help
to guide me through certain tasks. If I'm having a day
where my anxiety is very bad and my sensory issues are really severe, I can struggle with basic tasks like getting dressed and getting washed
and making a cup of tea. There were some days
where I don't get dressed and I don't get washed because those tasks are overwhelming. So you can see, my autism is not mild;
it affects me significantly. And it can affect my ability
to function independently some days. So how then was it missed for 35 years? How was it that even I
did not know that I was autistic? We are taught from a young age
how to interact with people: we're taught to chat, to be polite, to play together, to share,
and to take it in turns. But these things don't come naturally
to an autistic child, and some of them can
actually be quite uncomfortable. I really struggle with eye contact. It feels really uncomfortable for me, and it's only something
I feel comfortable doing with somebody I have
a very intimate relationship with. But I was taught from
a young age by my mother, "You must look at people
when they talk to you. You must look at them." There was no way I was getting out of it,
so I learned to cheat, and I look at people here,
just above their nose. And sometimes I'll look
at them and look away quickly, so I'm giving them
the eye contact that they need, but it's more comfortable for me. I also really struggle to make friends because social chitchat
doesn't come naturally to me; I don't know what's expected, and I don't know
what people want me to say. But I learnt to hide my confusion
at a very young age, and I learnt to copy
the behavior of other people. We're also taught at a young age
how to present ourselves: flapping our hands and tapping
our head are not socially acceptable, so we're not encouraged
to do those things. But those movements can be
a lifeline to an autistic person. They're called stimming,
and they are crucial. For me, stimming is
a crucial form of communication. When I'm happy and excited,
I flap my hands. And when I'm trying
to process information, I'll block out sensory input - I twitch my fingers
really close to my face, and it blocks out everything else. But this and this
is not socially acceptable, and I learnt at a very young age
to hide my stimming. I learnt to keep it inside me
until I was in my room, on my own, where I could rock and I could jump
and I could flap my hands and tap my head. Stimming is a behavior that is often
forced out of autistic children because people don't understand
how essential it is. Autistic people need to stim. We use it to communicate; we use it to process information; we use it to block out
that extra sensory input that can be too much for us; and we can even use it to help prevent
a meltdown when our anxiety is building. So with all the social coaching
and expectations on how to behave, autistic children are inadvertently
taught to hide their autism. They are taught to mask
their autistic behaviors. Little girls are brilliant
at observing other people, and so autistic girls learn
at a very young age to hide their autism
and to mask their autism. Masking is not a conscious effort; masking is the result
of being told repeatedly, "You must not behave like this." Masking hides our true self. It hides our unique voice, and it replaces it with a more
socially acceptable version of ourselves. Masking is exhausting. I am masking now, and I am masking all of the time
when I'm with people. I can't switch it off; it's not a conscious thing, and it is dangerous. People are unaware they
are teaching their children to mask, and they are unaware of how much damage
it causes to our sense of identity. I learnt to mask
my autism and my true self because I was taught to by my parents
and my teachers and my friends. They had no idea what they
were asking me to do, but I did it anyway. And I didn't realize how dangerous
that was going to be for me. As I grew up into my teens,
my early 20s, my autism fought back. It was tired of hiding,
and it was tired of being masked, and so it showed itself
in the only way it could: I developed an eating disorder, I began to self-harm, and I tried to end my life repeatedly. My autistic self
was screaming to be heard, but the louder it shouted,
the more incorrect labels I was given: bipolar disorder,
borderline personality disorder, depression, mixed anxiety disorder. So the misdiagnoses piled up because my doctors
had no idea I was autistic because I had learnt
to mask it so brilliantly. I was given psychiatric drugs
which did not work, counseling and therapy which did not work. I was even given electric-shock therapy, which did not work. I spent ten years
in the mental health system bouncing from one
inpatient stay to another, until finally I was left blind
for two whole years because of psychiatric drugs
I should not have been on. Enough was enough: I withdrew from the mental health system. I weaned myself off the medication,
and I waited to see what would happen. My doctors warned me
my mood would crash, but it didn't, and instead, I got better. I started to explore other areas
of my life I was struggling with, and for the first time, I realized how difficult it was
for me to make friends. I began to understand that I struggled
with certain types of language, and I allowed myself to stim, and I found it helped relieve my anxiety. I referred myself
to an autistic-diagnostic team, and they confirmed
my suspicion: I was autistic. Masking autism is dangerous,
and it is killing autistic people. Autistic people have a life expectancy
of ten years less than their peers. Ten years. And the number one
cause of death is suicide. At the age of 35,
I discovered my unique voice. I discovered I was autistic. But I also discovered that society
is stifling the voices of autistic people. We need to allow our children
to be their true selves. We need to allow them to think and to be. We need to stop telling them how to think, and we need to stop worrying
about whether they'll fit in. We need to also let
our autistic children be autistic. We need to stop forcing
out behaviors we don't understand, and instead we need to encourage their special interests
and their unique skills. I am autistic,
and this is my unique voice. Thank you. (Applause)
This was really interesting, thank you for posting it.
Thank you so much for sharing this.
I was diagnosed at forty two. I can relate to this a great deal. Thank you so much for posting it.