Following is the full text of Carrie Beckwith-Fellows’ talk titled “Invisible Diversity: A Story Of Undiagnosed Autism” at TEDxVilnius conference. In this talk, Carrie shares her own personal journey towards diagnosis of autism: why it took 35 years, and what are the root causes for such invisible diversity?
Carrie Beckwith-Fellows – TEDx Talk TRANSCRIPT
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 learned to hide my confusion at a very young age, and I learned 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 learned at a very young age to hide my stimming.
I learned 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 learned 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 learned 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 10 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.
Download This Transcript as PDF here: Invisible Diversity_ A Story of Undiagnosed Autism by Carrie Beckwith-Fellows (Transcript)
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