Translator: Sarah Suah Reviewer: Claire Ghyselen
The first time that I met Yanis was in the early 2000s,
during my speech therapy studies.
Truth be told, it was not him who I saw at first,
but his teacher.
She had just returned from medical leave
and had her arm in a sling.
Yanis, I heard him.
He was taking a break in a next-door room.
He was screaming loud, very loudly
and he jumped so much that the walls and the ground were shaking.
I’m sure you think that I’m exaggerating.
But no.
This is exactly what happened when Yanis was happy.
This small reception unit is located in an old village house,
and the old parquet floor must have kept track of it, I am sure.
As his teacher.
When Yanis was not doing well and went into a crisis,
he could lash it out at the objects around him,
or at himself or others.
Sometimes to the extent of arm fractures.
I forgot to mention that Yanis was 17 years old,
a handsome teenager about six feet tall, built like a tank.
So I'll admit, when I first met him, I freaked out.
Really.
Yanis, like Noa, Valentin, and Ludo, is autistic.
He does not speak verbally
and has an intellectual disability.
You would say that he accumulates difficulties.
Especially if you look at him through the lens of his troubles.
By the way, that’s exactly what we’ll be talking about,
the autism spectrum disorder
which is defined by impaired social communication
and behavioral peculiarities.
So I said to myself that if I, the speech therapist,
I am a language and communication specialist,
and if Yanis does not speak and has a communication disorder,
no need to be the sharpest knife in the drawer to see
that maybe, we have some job to do together.
However, even today, families have to fight
to have their child referred for speech therapy
and to be able to benefit from the follow-up that they need.
“Because ma’am, your child doesn’t need speech therapy.
He does not speak.”
When I think about it, even today,
it makes me so angry that I get beet purple red with anger.
Allow me put it to blankly: that’s total bullshit.
Because everyone knows that you can communicate without speaking.
A baby who has yet to speak a word
communicates with his parents, and with those around him.
He smiles, he points,
he uses his body, his hands, his facial expressions,
he cries.
This is all communication.
But in certain cases, like with autism, for example,
it can be necessary to teach these communicative behaviors early on
and to offer alternative systems to oral language.
But I’ll come back to that shortly.
Thanks to Yanis,
I learned to overcome my fear of asserting my place with him
and I turned my rage into a driving force.
Some time after my encounter with Yanis,
a law was passed in France,
well known by the families of people who are handicapped.
The law of February 11, 2005 for the equality of rights and opportunities,
participation and citizenship.
That’s what it’s called.
This law says, among other things,
that every child has the right to go to school.
We’re not doing a favor for this autistic child,
it’s his right to go to school, just like all the other children.
These autistic children, when they’re old enough to go to school, they go.
But rarely full time, unfortunately,
and often to work on socialization.
But school is not only social interactions,
it’s also learning.
And among which, an essential skill
for which children are prepared starting in preschool
and on which their education is immediately based on.
See what I’m talking about?
Reading.
Yes.
To know how to read and use writing,
is not bad for living an independent life as a citizen.
To learn,
to tell stories or recount something you’ve experienced,
to be informed, to escape.
Have you ever thought about everything that reading allows you to know,
to discover?
If we’re talking about equal opportunity,
that means that learning should be accessible to everyone.
And yet, in the manuals, or the trainings,
we can sometimes read that it’s complicated for autistic children,
it’s not a priority, there are other things to work on
and above all it’s almost impossible if the child doesn’t speak.
To learn to read, you have to know how to speak.
Again.
That means that this condition of not being able to speak, to verbalize,
is considered an obstacle
to being able to enjoy the same rights as others.
“Yeah, too bad, little boy, you have to speak.”
But these conditions are base on what we know
about the development of the non-autistic child.
The child with ordinary development,
which we call normal.
But autistic children show characteristics,
particularities in their development that don’t follow a clear path,
the standard path.
Why then should we impose on them our benchmarks, our norms?
What is it that makes me impose,
or choose a path that risks not being right for him?
And to say that, “That’s silly. He’ll never be able to do it, this child.”
And if, instead of seeing his supposed disabilities,
I questioned the way that I was to teach something to this child.
Am I considering his needs,
and his particularities?
And if these particularities were a strength
which I can draw on to offer him something different?
With a wealth of observations and questions,
it was in 2005, with Anne, my colleague in special education,
we created a tool that allows autistic children
to begin reading.
Here’s how.
What’s difficult for the children whom we work with,
is oral language, the recognition of sounds.
But what often works well is visual memory, repetition,
the things that are presented in a concrete way,
without frills or implicit or double meanings.
First, we teach the children
to associate the sound of a vowel
with a color.
For example, the A with green.
Then we associate this color with an action
that represents a consonant, for example, [pffff] for the F.
When the child dips his fingers into the green paint
and he reproduces this gesture on paper,
a mark appears.
The trace of the fusion between the F and the A.
FA.
The shape of the F, the color of the A.
He discovers the syllable FA.
By visualizing the syllables,
by practicing with many activities using this principle,
we can begin decoding syllables
that make up words and sentences.
We construct language.
That’s how Ludo, who doesn’t speak
but can decipher syllables and is beginning to read words,
could read the word “horse” and associate it with the corresponding image.
He understood at that moment that these two things were the same thing.
I saw it when he looked at me intensely.
His look that said: “I got it!”
If Anne and I had followed the guides established by the norms,
we would never have created this tool.
Here's what I've learned
thanks to the children who have allowed us to go beyond what we think we know.
This is “Free yourself from the norm
when it limits potential and creativity.”
Because in freeing ourselves from the norm
we can discover new ways of learning, of communicating.
Like when we meet people
who express themselves with tools other than their voice.
Their hands, for example, or images, drawings,
pictograms or other things.
All of that is called Augmentative and Alternative Communication (AAC).
AAC for those who know.
Ludo still doesn’t speak orally
but he uses a tablet to express himself.
Noa too.
A few weeks ago,
when I was grumbling on my hands and knees as I picked up the pencil holder
that I had just knocked over while carefully taking off my jacket,
I heard from behind me Noa saying with his tablet,
“Can you help me to pick these up?”
which is a pre-recorded message that he’d never used before.
At that moment, I forgot all about the paper clips,
the crayons and the pens scattered across the floor.
Noa, for the first time, was making a comment
on what he was looking at.
It was connected to me,
to the situation that we were both experiencing
and he said it to me.
It doesn’t seem like much, but this incident shook me.
Noa does not speak.
He sways back and forth by himself, while emitting strange noises.
He often gives the impression of not being there.
But what do we really know about his inner world?
Of what he perceives from his environment, from the richness of his inner world?
What would he want to say?
Valentin came two, or even three times a week
for speech therapy sessions at my office.
His mother often told me
that she spent more time with me than with her friends.
Classic for these families
who run from appointments to meetings for their children.
Valentin came in turn with his father, his mother.
Even his grandparents and uncles came.
It was a family affair. Everyone was involved.
Everyone supported little Valentin’s progress.
Everyone was hanging onto his lips,
waiting for the moment where he would say his first word.
I remember how I felt when, at six, while in session,
in the presence of his mother, he said, “Chips.”
I think she and I would have liked for him to have said something else.
But that’s how it was, that's what he wanted to say.
This is augmentative and alternative communication.
It is to give access to the inner world without restricting it,
so that the person using it can say what they really want to say,
and not what we would like them to say.
So that they can become aware that
they have the power to act on their own life,
so that they can make choices for themselves.
What Noa and Valentin taught me is,
"Overcome your prejudices, assume abilities
and consider that everything is possible."
So,
If I come to you tonight,
it is not to lecture you, nor to be the torch-bearer for autism
or augmentative and alternative communication.
That would be misplaced and inappropriate.
Other people would be better able to do that.
Families, autistic people
who would come to bear witness to their own inner world.
No.
I’m here, just like you,
with my guts, my anger, my fears, my doubts and my questions.
Despite these encounters, despite these experiences,
am I not at the end of the day a part of the problem myself?
Aren’t my perceptions,
what I think I know about this or that person,
a limiting factor to his or her social participation?
Did I really give Yanis every opportunity
to flourish and live the life that he wants?
Only he will know.
He’s no longer here to testify.
I wonder if I was a good companion to Yanis.
But he was key
for the building of the person that I am.
That is my wish for you.
To have the chance to meet your Yanis
or your Valentin.
(Applause)