I want a renaissance,
to shine a light.
Be the change we want, set things right.
We've been waiting in the dark
for so long.
Hi everyone I'm Amethyst, and welcome to "Ask an Autistic".
In today's episode, I'm going to be talking about a pretty interesting neurological phenomenon
that, while not exclusive to Autistic people, does occur more often in Autistic people than in non-Autistic people,
and that is prosopagnosia.
Prosopagnosia is also known as face blindness.
Prosopagnosia is a neurological condition where the part of the brain that recognizes faces
and remembers what peoples faces look like, and is able to identify different people through their faces
isn't working like how other peoples brain works.
What this means is that somebody with prosopagnosia, or face blindness,
will not be able to recognize even their close friends or even their family or a spouse.
Well, they won't be able to recognize their face, but more on that in a minute.
There's two kinds of prosopagnosia:
theres congenital prosopagnosia or developmental prosopagnosia which is present since birth
and there is acquired prosopagnosia which is usually the result of physical injury to the brain and occurs more in adults
Acquired prosopagnosia is caused when there is damage specifically to the occipital-temporal lobe of the brain.
People who are born with prosopagnosia
have never and will never be able to recognize faces.
It's not something that can be learned.
That part of the brain just functions differently.
I have prosopagnosia. So, a lot of what I'm saying in this video is gonna be coming from my own experiences.
Lot's of people will forget somebody over time
and lots of people might see someone out in public, a stranger that they think is someone else,
and those are normal, like, mix-ups or misrememberings
but people with face-blindness, uhm, I can walk by a family member
and if they had changed their hairstyle and their outfit, I would not be able to recognize them.
Even Marvin, who I see everyday and spend quite a bit of time with and whom I love dearly,
when I'm looking at him, I can describe his face to you, I could look at the individual features
I could describe the shape of his nose
and the color of his eyes and how thick his eyebrows are,
but I can't later recall what he looks like.
And when I remember things, there aren't really faces in my memories.
Growing up with prosopagnosia, as you can imagine, can cause quite a few misadventures
or mix-ups.
Children with prosopagmosia are going be very confused.
If their parents don't know that that's what's going on with them,
and if the child doesn't know what's going on with them,
people are going to think that the child is rude or that they're just lazy
or that they need to work harder at remembering and putting names to faces,
when working harder won't do a thing because your brain doesn't work in that way.
People with prosopagnosia can be perceived as rude
because there can be a moment of hesitation if someone says "Hey" to us when we're out
and we don't recognize them, or there's a moment
where we're using secondary and tertiary clues about a person's appearance
to figure out who they are.
And I've found that people actually can get kind of offended if you don't remember who they are.
I've used all kinds of phrases to try to explain to people without actually explaining
or pulling out big science-y, neurological type words.
Like, "I'm sorry, I'm really bad with faces,"
or, "Oh, I just, I didn't see you there,"
or, "Oh, I didn't recognize you. Your hair's different,"
but people sometimes push and then it gets awkward to explain.
The discovery of developmental prosopagnosia is actually pretty recent.
Previous to this, neurologists and doctors and psychiatrists thought that prosopagnosia was very rare
But now that we know about developmental prosopagnosia,
which seems to be commonly co-morbid with Autism Spectrum Disorders and other developmental disorders,
only now are we realizing how many people have face blindness or who are face blind.
I'm going to link to my sources, but most of the information that I've found
suggests that it could be as many as two and a half percent of the population,
like, human beings, have prosopagnosia.
So how is it that most people have never heard of it or people who have it don't even know what it is?
Well, like I said, if you're growing up with prosopagnosia
and you don't know what it is, and your parents don't know what it is,
and you never have the chance to encounter it and learn about it,
then you're gonna go through life just thinking that you have a really bad memory for faces.
And over time, a lot of people actually get down on themselves about it,
because there's this idea that if you are bad at something, you can work harder and get better at it,
and you just have to work harder.
But that doesn't always work, especially for people with a neurological condition.
So what we do is we find ways around it,
because, I mean, we do recognize people. I don't scream and run away every time Marvin comes in the house.
So how do people with face blindness recognize people?
I don't know if this is proper terminology, it's probably not, but this is just how I think of it:
When it comes to people's appearances, most people would rate the face as,
like, the primary identifying characteristic.
And then, I would say that there are secondary and tertiary characteristics.
And under secondary characteristics, I list things like hairstyle, style of make-up,
like some girls always wear a wing on their eye,
clothing, jewelry,
anything that contributes to a person's appearance, but isn't a face, I can remember.
I meet someone with an undercut, and I don't have any other friends with an undercut,
that's going to be an easy way for me to remember them,
Or if someone always wears a certain pair of earrings or if someone always wears a certain hoodie,
then I can recognize them by those secondary physical features.
Of course, this can be a real problem when people dye their hair or cut it,
or wear a different hoodie.
Or, I guess, if the were naked.
Sometimes, you just can't rely on those secondary characteristics,
and so that's where the tertiary characteristics come in.
Under this category, I would list people's voice and,
I don't know if this sounds weird, but their gait and the way that they move.
Some people move very jerkily and erratic and not so smoothly, like me.
Some people have a very distinctive walk that you can pick out of a crowd.
And for myself, I have synesthesia,
and so, when I hear a person's voice, I see a color.
And so people with prosopagnosia without synesthesia
will be able to recognize people be the sound of their voice.
And for me, I have a double helpful thing in that I can hear somebody's voice and see the color.
So I often use the sound and a color and appearance of people's voices
to identify them if all else fails.
But like I said, these aren't fail-proof,
and sometimes people will dress differently, or wear contacts, or get a tan,
and then you kind of have to just... laugh about it and say,
"Hey you."
I've heard from quite a few parents of Autistic children
stories of their child, um, mistaking a woman wearing the same dress or a similar outfit for their mom,
or going off with a random stranger because they mistook them for somebody that they knew.
And that kinda thing happened to me all the time as a kid,
so when I hear stories like that about Autistic children,
I recommend to the parents,
"Hey, read this Wikipedia page on prosopagnosia
and see if you think that that is what is going on with your kid,"
because knowing about something enables you to understand it and to accept that about yourself
and then to find work-arounds.
When it comes to children with prosopagnosia,
explaining what face blindness is, and that it's something different about their brain,
and that it means that they can't remember faces and helping them understand
why their experiences are different from other people's will be very helpful.
And then once that explanation of what face blindness is is out of the way,
you can help a child to develop a kind of piece-by-piece method of identification
using the things that I mentioned
like clothing or jewelry or a distinctive hair color or the sound of someone's voice or the way they move.
You can also tell the people in your child's life about it, like teachers and their peers.
And so that way, a child's prosopagnosia won't accidentally get mistaken for rudeness
or for being flippant or petulant or lazy.
For all people with prosopagnosia, children and teens and adults, Autistic or not,
warning us when you have cut your hair or dyed it, or if you got a nose ring,
or changed your appearance in a way that might throw us off.
For example, "Just a heads up, but my hair is now fire-engine red,
so next time you see me, it'll be different."
For Autistic people, that's something that's thoughtful to do, whether we have prosopagnosia or not,
since quite a few of us have trouble with change;
it can cause stress or anxiety or confusion for us.
And if you want to go all out and be awesome for a person in your life with prosopagnosia,
and you run into them and it's not, like, a scheduled meeting,
just say something simple, like, "Oh, hey Sarah, it's Amethyst."
Unfortunately, there aren't any therapies or treatments that have been proven effective
for people with prosopagnosia,
developmental or acquired,
so as of yet, no.
The best thing for a person with prosopagnosia is to know, first of all, what's going on with them,
so that they can understand and accept that about themselves,
and then to find work-arounds,
like using these secondary and tertiary characteristics about a person to identify them,
and then having understanding and accommodation from the people in their life.
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Thank you for watching "Ask an Autistic."
I want a renaissance,
to shine a light.
Be the change we want, set things right.
We've been waiting in the dark
for so long.