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.