Original subtitles

"AUTISM, WHILE IT MAY BE SEEN AS A MEDICAL CONDITION

AND PATHOLOGIZED AS A SYNDROME,

MUST ALSO BE SEEN AS A WHOLE MODE OF BEING,

A DEEPLY DIFFERENT MODE OR IDENTITY,

ONE THAT NEEDS TO BE CONSCIOUS (AND PROUD) OF ITSELF."

OLIVER SACKS

Well, one thing is to tell her about the epilepsy,

because she doesn't know...

She doesn't know about the seizure, right?

Not only about the seizure,

I mean about her process as a whole with epilepsy.

We must tell her that vitamins were suspended,

a new reality started from this point ahead.

We should tell her that Leny...

Leny called her at the time of the first crisis

in October, but they didn't talk.

Leny called Doctor Cañizales,

and after that she left a voice-mail to Doctor Negrón,

Doctor Negrón wasn't there.

One thing is to bring her up to date

about the new reality with epilepsy,

and to tell her that at the moment she's not taking vitamins,

that she's restricted to epileptics medication.

And the gastric medication...

And the constipation treatment and the basic gastric treatment.

OK.

That is tilium, ogastro and florestor.

The three drugs the doctor prescribed.

What else is to be spoken with Dr. Negrón?

I would like to ask her,

that we've been debating about the issue of the vitamins.

If they are really important, if they could be omitted,

this child is taking pills all the time.

Because she explained the other day,

this I've been telling you many times,

that you won't observe major changes in her development

and her performance right now,

but this will be noticed within time, when she gets older.

Her behavior improved monumentally.

When we took away the anticonvulsants.

- She was poisoned. - Of course! Definitively!

In fact, we tried to consult with Doctor Negrón...

It was impossible.

And a reassessment with Dr. Negrón and Elizabeth,

and it could not be performed.

You couldn't do it because of her.

She screamed and threw herself on the floor...

I'm gonna take her for fresh air.

Afterward she...

Hello, Helena!

...she even fell asleep.

Helena, a kiss for the doctor.

Do you want some water, dear? Do you want some water?

Hello, hello! Look!

Honey pie! Helena!

Helenita!

Sweetie, sweetie, want some water, Hele?

Some water?

No?

- Then... - Fancy a mandarin?

All that was taken away and it returned to normality.

The change was awesome.

During that medication process she went from very critical moments

to less critical ones.

While taking Kepra, for example, that drove her crazy,

Kepra was suspended...

- You may let her rest for a while. - I'll take her out a bit.

- Yes, take her out. - Come, sweetie, come!

Come on, Helena.

So we can talk about...

- Let's paint out here, sweetie. - Come on, honey.

Wow, that's a pretty drawing, huh?

Hele, look at me. Look at mummy.

Come on, a kiss.

Honey pie.

A little kiss.

Come, come with mummy.

- She doesn't want to get out. - Let's paint with Guido, come on.

She doesn't wanna go out, she's painting all right.

Stay there a bit.

- Come on. - She does wanna get out.

Come, come on.

You got to stand up so she can see the way out.

Honey, come out. Do you wanna come out?

Do you want to go out or rather stay in?

I guess she wants to stay in, sit there.

Leave her, leave her there. Easy, have a sit there.

Helena, Helena!

Honey pie.

Come here. Come with mummy. Helena...

That word was stuck in my head, it was like a record.

I researched in magazines, in newspapers,

I was very talkative with doctors.

"What is that thing? Who told you that?

Where was that published?"

Those were the answers I used to get.

Then I decided naturally his belongings should be separated.

Separated from other people's.

I thought, well, if this is contagious

let's keep his things apart.

I gave him a special cup, his spoon, his plate.

Everything was separated for him.

Because I was afraid.

When we had to take the bus,

I took care that he would not sit next to other children

because I was afraid, I didn't know, I was ignorant.

But I never really asked,

I should have asked the doctor what it really was,

and I never really asked cos' I was afraid of the answer,

I was afraid what she would say.

At the time, how old was Giovanni?

He was 4 years old, heading for 5.

She was afraid of the unknown.

Yes, it was something unknown.

He wouldn't walk.

As a boy he walked at 17 or 18 months old,

and that's why I took him to the doctor,

and he said: "move elsewhere!

Maybe it's the house's environment that's not suitable."

Severiano, my husband, found us a new home.

All things due were done and we moved here.

We had been here about two months, then he started walking.

Blanca is a dedicated mother to all her children,

besides Giovanni she has a younger daughter

who's also very helpful in Giovanni's therapy.

Blanca has to work and also take care of the children,

she is also willing to find the time to work with her son.

And there has been progress.

Tell us, Blanca, how did you realize your son was afflicted?

And how are you working with him?

Well, since his second birthday I noticed he would not talk.

I took him to a specialist and then the doctor said:

"Don't worry, madam, this child simply has a speech delay."

Nevertheless, I insisted and the doctor referred me

to a specialist, an otorhinolaryngologist,

because the doctor said he was deaf

and I told him: "he's not deaf, when I call him he comes."

Then the otorhinolaryngologist referred me to a neurologist.

The neurologist evaluated him,

several tests were performed and he was OK in all of them.

He was a normal boy,

but it seemed to me strange that he wouldn't talk.

With the aid of a social worker of his dad's employer at the time,

I got a reference card for a clinic to this doctor,

and I arrived there and they saw me straight away,

they gave me an appointment and a reference for doctor Negrón.

He's already been eight months in therapy

and his progress is noticeable.

He was a child who would not play,

his only game was to drag himself head down on the floor.

And he doesn't do that anymore.

He plays with his little sister,

he looks for food, he eats by himself,

he ask for things, he calls everybody by name,

things he would not normally do before.

And he can count.

Yes, he counts till 30, when he likes it,

because he's also a pretty capricious child.

I don't know what to do,

because we do everything, we do everything...

How does she start?

She uses a phrase we tell her when she's feeling ill

and we want to comfort her,

this is: "what is it, what is it with the princess?"

And then the anxiety triggers on.

It starts with a progressive anxiety. There, she felt asleep, you see?

It is as her breathing agitates and then she says:

"Everything's OK, princess. What is it with the princess?

Come, my love. Come, my love."

And suddenly begins.

When we hear her saying that we know she's gonna cry.

We jump immediately because we know

when she starts saying "everything's OK princess", it's like...

Except yesterday, remember she started like that,

I grabbed her, I carried her to the bed,

stayed with her and she fell asleep.

"What is it princess?", she says, which is what you tell her.

Or "everything's OK, princess."

"Come, my love."

Does she repeat all that?

She says it all at that moment.

"Come, my love."

And she tells that to the therapists when she's angry at the therapies.

At the support group,

when they're working with her and she gets mad,

she puts her hand on her belly or the chest,

and she says this phrases.

And then she burst into tears.

- Helena! - Say hello, Helena.

- Hello! - Say hello.

Hello. Go change her clothes.

At once, right?

Yes.

Helena! Take off your shoes.

Your shoes, Helena!

Very well! The other shoe, Helena.

The socks, Helena, take off the socks.

Take off the socks, Helena!

Helena, take off the socks!

Honey pie! Helena, come on, take off your socks.

Honey!

Take off your socks!

OK, very well. Now, take off the other one.

Give it to me! Very well!

Take off your pants, Helena! Take off your pants!

Let that go, give me that.

Come on, take off your pants. That's it. Very well!

Give me the pants, give 'em to me.

Take off the shirt, Helena! Helena, take off the shirt!

Come, stand up!

Take off the shirt, come on!

Take off the shirt, Helena!

Well, that's fine.

Let me see, Helena, one foot in here, the other foot.

Pull your panties up.

Come on, I help you, honey pie.

Take off the shirt. Take off the shirt.

Very well, Helena!

Give me that. Very well, honey pie.

Come here, your head.

Put your head in, OK.

Honey, a kiss. Very well!

Give me five! Give me five!

Give me five, Helena!

That's it, come on.

- Ready. Shall I put her in? - Ready!

- Done? Go, Helena! - Come, Helena, to the pool!

Get in the pool, Helena!

- Come, come! - Helena, the pool!

Come to the water, Helena, come!

Come on!

Honey pie! Let's get in the water.

Helena! Let's get in the water! Come!

Helena! Helena!

Come on! That's good. Come, dear. Come, darling.

Darling, say something.

Say "hello, mummy."

I am the star of this film.

She's cold.

She says it was traumatic to hear about the autism

but it isn't like that.

Because people didn't know what autism was,

we didn't know the prospects or if it was curable or not.

So we always thought it was curable, we always had that doubt.

But when they told her she was going to get blind,

that was really traumatic.

No, no. The doctor told me that I should stay calmed,

she explained what autism was, do you follow me?

Don't agitate yourself, there are worse cases, she said.

Of course, I cried a lot.

I became a Mary Magdalene.

And seeing the other kids, you know, kids more afflicted than Lilian.

That's tough.

That's rough on one, you know it's like a tragedy.

"My only girl," I said, "Oh, my only girl!"

"My God, why me?" You know, then the doctor said:

"Stay calmed, it would have been the same if it was one of the boys."

Hermelina, I want you to tell us about what you've been through

with your daughter,

and how have you achieved her improvement.

Well, at first I realized she had problems

because when she was a year old and she wouldn't say mum or dad.

I took her to several medical centers

to be checked out by specialists,

and they told me she was mentally retarded.

And I didn't consider that was possible,

because I would tell her things and she understood,

she would repeat after me.

And then she was referred to the house of doctor Núñez.

There we started therapies and she has improved substantially.

Do you work with your daughter at home?

I work with her at home,

everyday we work on her therapy and I teach her the things I know.

Do you think she has improved?

Yes, she has improved a lot.

She has a slow recovery,

but I expect she will overcome her crisis.

- Is she more soothed? - She's pretty well.

Does she pay more attention?

She pays a lot of attention, in a way she didn't used to.

Did the doctors ever recommended another type of therapy, Hermelina?

No, they didn't recommend any therapies at all.

They said the child was hopeless,

that she was afflicted by Down Syndrome.

What do you want?

What do you want?

What do you want, honey?

Do you want to keep playing that game?

Should we give her the board? Do you want the white board?

Don't let her go.

Look, the white board. Do you want to draw?

Do you want some water? Some water...

Water? Do you want some?

Guess what I am drawing.

What is this? What is this?

Let's paint a drum.

What is it? What is it?

This, what is this?

It is a drum, boom boom, it sounds like boom.

A rounded face, with two eyes and a nose,

a little mouth to smile, with two ears too

and lovely hair too, this is Helena very happy.

This is Helena very happy.

There are reports when this was the clinic Dr. Alberto Mateo Alonso,

before SOVENIA existed,

when she started her work

with autistic spectrum disorder children.

"They cannot take him out of home because he's aggressive,

now he wants to beg for money to keep and buy a bathing suit."

Look, "History of the case."

"Pregnancy of the mother went by without complications,

with its distinctive characteristics,

vomiting during first months, physical discomfort."

This is Derick. "Birth was normal."

"It is after his fourth birthday,

due to the difficulties for initial speech development,

that they decide to consult specialists

and they start working with them.

During the first months and his first years

he presented uncontrollable tantrum."

"In the first months the child showed uncontrollable tantrum".

Like Helena.

- She cried and cried. - "Apparently groundless."

"At 14 months they noticed constant balancing,

it is all seen as an act of misbehavior and treated as such."

Well, how has it been for you

your relationship with autism spectrum disorder?

I should have been more involved, do more research,

even here at home and not keeping myself apart

and being isolated.

Because that is what I've been doing, staying alone.

And many times I felt that God had abandoned us.

Because this is a thought you normally have.

Because at my age,

I think to myself: Who's gonna take care of my son?

He doesn't have a profession, he cannot interact in society,

I don't have a trustworthy person,

my husband, but he is as old as I am.

Derick is a boy that was brought here

due to isolation problems,

lack of physical and emotional contact

with the people around him.

Derick was in a school for children with learning difficulties.

Nevertheless, Derick did not improve at school.

Here we see him, in a therapy session with his mother,

doing everything his mother tells him, imitating conducts.

He takes the pencil with his left hand

and tries to complete the missing bits

in the house his mother drew.

He also fills in with color what his mother indicates.

You finished, Helena! Finish.

Finish, come on. Very well!

And you, how does it go?

- Yes! - Yes, what?

I'm gonna paint.

And that snot? Are you gonna paint with snots?

No! With the markers.

The snot markers.

Yes... No!

They are yummy, the snots, right?

Yes... Not me!

Helena, what a beautiful drawing!

And Dudu's, I am speechless.

Very well done.

Are you finished?

Give me five, princess!

Go all right, you can go.

You did it very well, princess, astonishing!

You worked very hard.

And me!

You? You too, you are wonderful.

Yes! Let's paint, dark green.

Come on, let's paint.

Do you wanna paint the flower or are you finished?

When was it that you realized

Helena was different to other children?

What made you think of this possibility?

The possibility that she could be different.

Well, this happened

when she was diagnosed with autism spectrum disorder.

Thing is before that moment I had no idea what autism was.

Before that I noticed Helena did things differently

to other children

but that didn't make me think she was different.

I thought it could be simple health problems,

those that afflict any boy or girl.

Before her first year,

at eight months old we started noticing,

by my girlfriends who told me, even though I resisted to believe:

"Helena is a bit weak, she's a bit lazy,

she doesn't have enough strength."

So, the first thing I did was asking the pediatrician,

and the first diagnose took place,

when she was diagnosed with hypotonia,

that is she has a tendency to low muscle tone.

We had to start working with physical therapies,

in theory that's all there was at a neurological level.

She undertook a large quantity of tests,

brain CT scan, electrocardiograms,

and everything seemed fine, except for the low tone muscle.

This was the first report from her occupational therapist,

her name was Rosalba, the first of many that came after her.

Her first occupational therapist and this is an improvement report.

In fact, the word autism is not mentioned at all.

She was a year old girl.

After going through this stage,

when Helena was about 20 months old,

maybe before at 18 months,

I started noticing very peculiar things.

She started developing language skills,

she started learning some words, and suddenly she went sort of mute.

All the things she said, she never said anymore.

Never, ever, ever she stared at me, never answered by her name, never.

She was totally isolated, her games were in absolute solitude.

- How old was she? - 19 or 20 months old.

Helena was all the time with her story books,

by herself, alone with her toys,

singing all day, singing and humming all day long.

Since she was my first child

I thought all children sang all day long,

I thought it was a normal thing for children to do.

Then particular behavior started appearing.

Helena started getting angry.

I mean, she started having tantrums as a baby,

and those were hours of crying,

and we could not figure out why she did.

At the time the term "mild autism spectrum disorder" was mentioned.

To me this was devastating, it was a blast,

it was a catastrophe.

It was like not having a place to stand on,

like the walls fell apart, like my life was taken away.

This is your first kid,

the person you most love in the entire world.

I was already separated, I lived with her alone,

she was the center of my entire life,

and then, the possibility she could have a problem

that could not be dealt with medication

or a medical treatment,

on the contrary, that this was something for life,

this reality tears you down.

Let's see. Hele, let's use color... green!

Green!

Here... Very good!

Beautiful, and this color?

Tell me, darling.

- Love you. - Excuse me?

- I love you! - I love you!

Me too!

I love you too. I love you all.

No, not like this.

Don't make a mess.

That's right. Everything in its right place.

You are telling me all the things he achieved

at the time in SOVENIA,

but tell me about social interaction, at that stage,

did he improve in that area or did he only related to you?

He was always related to me.

He has related to other people very little.

He is very fond of the girl who lives across the hall.

She comes and knocks the door and he opens it.

I have to beg him to open the door,

but if she comes barely saying: "Papi, open the door."

He jumps running, opens the door and hides in his room again.

But it's only her, no one else.

She helps him when he's by himself at home,

she helps him and he has learned to know her...

Yes. When I go out, she makes his breakfast in the morning

and brings it to him, when she prepares coffee,

or if she's making lunch she brings some for him,

they get along fine.

She comes in and he comes out of the room,

when he realizes it's her, he goes back to his room.

And you, after the episode with the dogs,

the issue of fighting with dogs and not taking him out anymore,

after you took him out of SOVENIA,

did you ever consider taking him back to school?

What happened to him

after he stopped going to SOVENIA for so long?

I would not dare to take him out,

and I didn't because I was terrified

a dog could come and attack him, and kill my boy in the street.

What was I supposed to do? I had no strength to defend him.

I think from that point he slowed down,

his progress deteriorated,

because after that he became very aggressive.

At that time he isolated himself,

and because of his aggressiveness we would avoid to be near,

after that occurred the episode with the table.

Then we would avoid him,

and he would come out very little to spend time with us.

I think after this he slowed down a lot.

He used to dance.

When we held parties at home,

you told him "Giovanito, come dancing"

and he would dance with anyone who would invite him.

He didn't know proper dance steps, but he moved his feet.

- Well, he had fun. - Yes, he had fun, he enjoyed it.

Not now, for instance, when his birthday is approaching,

on September 26th,

he starts a week before "it's Giovanni's birthday,

for Giovanni cake on the table, cake and soda pop."

One tells him: "Who are you inviting?"

And he says: "Antonio, Evelyn, Toñito, mom and dad."

We are the ones who are always with him.

No one else, just the ones he shares with.

He waits for it in the evening,

he looks forward the cake is set on the table

and then he comes out to sing happy birthday,

he always comes out for singing.

He sings, claps his hands, eats his cake and returns to his room.

But if it's anyone else's birthday, his dad or me, anyone, we say:

"Giovannito, come sing happy birthday,"

and few times, when he fancies it, he comes out to sing

and sits down on the table with us to sing happy birthday,

but most of the times he stays in his room.

WELCOME VENEZUELAN MENTAL HEALTH LEAGUE

Giovanni is a boy that did not talk.

Today, Giovanni is capable of working with his mom

in this session, like he did at home,

during six months previous to getting to school.

Giovanni was a boy who dragged himself

on the floor constantly, he was not able to play

and never uttered a word until he was six years old.

Now we shall hear segments of the session

where he works with his mom.

Brush the teeth, right?

With your toothbrush, hold your toothbrush.

Let's go pee?

No, well, let's brush those teeth.

Helena, brush your teeth! Right? Let's brush those teeth.

Wet the brush, wet the brush here.

Brush your teeth.

Well done, princess! Brush your teeth, princess!

Brush your teeth, Helena, by yourself!

Don't get distracted, brush your teeth, like that!

Brush, brush! Like that.

Brush, brush! Like that.

Not sucking, Helena, brush!

Come, wet your brush here.

Come, now mommy does it, come.

Wait, wait a bit! Come!

Open wide, we don't want cavities.

Come here, mom helps you a bit, right?

OK, Helena, rinse the brush. Rinse it, in the water, very good.

Shut the lid, Helena! Shut the lid, look at the bottle.

Shut the lid of the bottle. No.

The lid, the lid. Helena, shut the lid.

Shut it, shut it. That's it, very well!

No. Shut the lid. First, shut the lid.

Rinse your mouth.

Nice, nice, nice!

Shut the tap, that's it. Very good, Helena.

Don't make a mess. Shut the tap.

That's it, excellent, Helena. Shut here, shut it.

Very well, princess!

Wait a minute and I bring you a towel.

Wait!

Here, Helena, dry your hands.

Helena! Dry your hands.

^IUp and down and round^I... That's the teeth song.

The other hand.

I brush my teeth.

Very well!

Give me five, you did it very well! Little kiss!

Come, out, come. Fantastic, Helena! Excellent!

I think if she was not autistic, she would be an introverted person,

if she wasn't autistic.

Why?

Because she's not like that, impulsive.

She would be, and that's my speculation,

if she wasn't autistic she would be closer to average

or an introverted person, not otherwise.

You mean she would be a quiet person.

And there's another detail, for instance, her incredible memory.

There's a boy that around, say 20 years ago...

More than 20 years ago.

More than 20 years,

he used to come here and from time to time

he brought her candy,

at the time he said: "he is hiding, give me candy".

Eventually, few years later,

he would come and say "he is hiding...

"He is hiding...

...give me candy."

I was very impressed,

because he didn't come in a long time

and one day he passed by,

and brought some chocolates for Lilian,

and then he says "he is hiding,"

and immediately she answers "give me candy".

Well, this thing is like a reflex,

an immediate reply that is never forgotten.

And if he came here and said "he is hiding,"

she would reply "give me candy."

Lilian is a seven and a half years old girl

who is attending clinic Mateo Alonso since she was four and a half

because she did not talk or play,

and she shows several repetitive characteristic movements.

But now Lilian talks plenty

and she's able to work at home with her mother,

according to the therapy plan she's been assigned.

Lilian was a child with common symptoms

of this autism affliction and she has improved...

That doesn't fit there.

...thanks to her mother.

Continue, yes, that's fine.

Ready.

Well, I am checking Lilian's, right?

Here's Antonieta's.

Here are the telephone numbers,

I'm gonna write them down at once.

How old was she here? Is it not written there?

- Very young, right? - Five years old.

Look, here there is another recording from 1976,

November 17th 1976.

Lilian's.

It reads: "Today she comes with her little brother."

"Lilian's mother called today to say her daughter woke up

screaming and crying, and she would not take breakfast.

Still I tell her to bring her for assessment.

However, when she arrives she's soothed,

she plays in the therapy, she almost doesn't yell.

She smiles and follows my instructions.

She doesn't talk a lot during the session.

She puts her hands up and down as commanded.

We film her.

She pays attention when the film is being shot.

Sometimes she's bothered by the light,

thereafter we go to the park and she climbs up the labyrinth,

she comes down when commanded,

she walks towards the therapist when called."

Very well, girl.

Very good, sweetie.

Get on the slide. Helena!

Slide down.

Very good!

He would not attack us or anything.

He was very respectful.

Yes, subsequently there was a radical change, radical.

What I mean is you must be very patient.

Because this is for life,

and you have to teach them all the time.

After the latest negative experiences,

didn't you look for other options of institutional care?

Yes.

He participated in some workshops, but he doesn't accept rejection.

He attacked the teachers.

And now he wants to attend the workshop.

But we have to make him understand that he's going to school.

He must show respect for the teachers and therapists.

He can't get angry and he must accept orders.

Because he doesn't take orders.

And that's when he becomes aggressive.

Who's gonna want to get attacked? That is the question.

He has to change his attitude, he has to work that through.

When he gets aggressive,

is he verbally and physically abusive or just verbally?

- He yells... - No, he yells.

But he has become aggressive and even abused his mom a few times.

He attacked her, cos' she got hold of him.

She didn't mean to hurt him, just to calm him down.

When he gets very aggressive and comes after me,

I use my strength to dominate him, not all the time,

just when he's very aggressive.

Never hurting him.

We have even taken some measures.

We take away what he likes the most: going to the park.

"You misbehave and no park, you misbehave no chocolates."

We have to do it, we have to apply this

cos' otherwise he won't hold on himself.

We've been thinking about the future.

Helena's life, our future and the life with her.

Not anxiously.

Precisely for this,

we don't want to be surprised when she's 20, 25 or 30.

When we're gonna be 50, 55 and 60.

Meaning, when we are over the hill...

Yes, we want to start thinking already.

We need to make plans from today.

How is going to be this process?

Basically, understanding, organizing and planning for that future.

How to prepare for her adulthood.

Because what you say is true, we are going through her childhood,

and we're sort of prepared for her adolescence,

but we are quite concerned about what's coming afterward,

the proper approach.

Yes, getting ready.

By now our approach deals with a lot of accompanying.

But what happens later on?

Put the hands up. We're working, come on.

OK. Go on! Go on, you're almost done.

Hands up, hands up!

Hands up, hands up! Come on.

Yes, like that.

The other.

Come on.

Put your hands up. Víctor, remain seated!

Come on. Your hands up!

No, you did it once before! Your hands up, again.

Let's finish working, come on,

so when you're finished you can rest.

Come, Helena, just one more. Helena!

Done? OK, let's work. Come on!

Autism is a disease

characterized by verbal and nonverbal language disorders.

As well as perceptual and cognitive problems.

This disease was described in 1943 by American psychiatrist Leo Kanner.

Ever since, much research has been done about its causes,

and the best treatment for these children.

In 1964, Rimland proved

this disease was not provoked by the parents.

Since it was believed

its cause was a lack of affection from the parents.

Then parents were referred to as schizophrenic parents

or refrigerator parents.

In 1964, a support group starts helping these children in the US.

In 1968, Dr. Margaret Mahler states: These children condition

is not to be blamed on parents mistreatment.

Parent's emotional abuse was not the cause.

Today, research on the organic etiology

of this syndrome is being made.

"Giovanni is a 29 years old man.

He was checked for the first time on October 3, 1977.

He was six.

He was diagnosed with autism syndrome.

Today, Giovanni does not attend labor workshops.

He's at home under care of his family.

For having autism syndrome, he's unable to live on his own

nor doing everyday chores.

He must live with an adult to cover feeding, health and cleaning needs."

Amazing, huh? See? Plaza Sucre.

He doesn't draw people in detail.

People are his only abstract drawings.

Look.

La Previsora.

It's 11:50.

11:50, in year 83.

When was Giovanni born?

I don't remember.

In 1971. He was...

12, 12.

OK, Helena, let's put the cloth. Come.

Helena, put the cloth!

Let me help you! One by one, Helena. One by one.

Like this. Look!

Well done!

Put the plate on. You put the plate. Very good!

Now this one. Come. Spread the cloth, very good!

Excellent, Helena! Bring the plate!

Bring the plate to put it there.

Bring the plate, Helena! The plate!

Hele, don't get distracted. We're going to eat.

Let's finish the job. First your job.

Grab the plate, Helena.

Grab the plate. Good, come!

Put it here. Come, princess.

Go to dad and look for the other stuff.

- Come, Helena! - Dad!

Look for the red cloth. Bring the mantel here.

Turn around, Helena. Turn around and look for the cloth.

- Princess, go with daddy. - Help her a little.

- Go, sweetheart, go with daddy. - Come, honey pie!

Come, Helena!

- To the kitchen, sunshine. - Come, Helena.

- These are the last ones. Go. - Take the cloth to the table.

I know you're tired. Come, honey pie.

Let's put these here.

Here, love. That's it. Super, princess.

Good! Spread it, Helena!

Put this here, Helena!

Put it! Spread it!

Spread it. Very good, princess!

Great!

So much people here!

Happy birthday, Helena!

It's boring!

This is my kitty.

I love my kitty.

And this...

This is my doggy.

He's a fierce dog.

He behaves badly.

I told you not to misbehave. You're grounded.

See? He's a mischievous dog.

It's boring! I dunno what to do.

I don't have anything to do.

Go to sleep.

Do I have to go to bed?

Yes!

I'm old enough. I can stay up late.

If you touch that again I'll screw you.

If you touch that again I'll hurt your hands,

do you hear me?

If you touch that again I'll hurt your hands.

Come here, come here!

If you touch that again I'll hurt your hands.

Do you hear me?

If you touch that again I'll hurt your hands.

I'll hit you. Now, get off!

If you touch that...

Lilian, turn off the light! Lilian, the light!

Turn it off. OK.

Go to bed.

Parents are the best therapist of their children.

When trained and with proper guidance,

they can help their kids.

Autism research has progressed

because of parents with no professional help,

who started to studying, creating techniques,

on how to improve their children's lives.

Here we have kids at school, many had never been to school.

This is Derick, in the classroom.

He uses the pencil with his left hand.

These children, once trained to the routine,

they help and work.

Giovanni, with pencil and paper,

joins lines and dots very well.

Giovanni already reads and writes.

Here in the park, they play.

They walk, make thick motor exercises.

But with a special feature, each one in their own world.

Hi, darling!

Ready?

Good.

Mauricio! Are you dancing?

Are you doing karate?

What else?

- Wow! - Good, bravo!

Bravo!

Helena, here, sweetie.

Let's get in, princess. Let's get in.

Give mommy a kiss.

In this stage with Helena the approach must head

into developing her needs to the future.

What does she need in that future?

The most independence possible.

That she can go alone to the toilet.

Clean herself alone, OK?

As an adult, she should have minimum elements covered.

Then we must be prepared to that future.

Helena will grow up. She will need different things.

Right now, we will go to the amusement park.

We will go to Bimbolandia park.

But when she's 15 years old she's too big for Bimbolandia.

If we don't make that change now to show the future,

a future we want with Helena, what can we teach her then?

Helena will want to go to Bimbolandia.

For that's what she likes.

She has a chronological age

and mentally her skills might be lower

or they might not develop other skills,

such as language.

We must not go on the road of things improper

for a teenager or an adult.

You don't see an adult playing in the park,

in Bimbolandia for instance, we don't want that integration.

We want our children developing skills

to go to a concert, for example.

In the future, to sit and share with the family in a party.

At a dinner, a party...

Then we must see those needs

as an adult and that she can belong to the family.

And to keep on the routine.

Even that in the future she may share with her brother.

Maybe join him in certain things.

I know it's hard to make that change.

Forcing us in a different vision.

We want to continue pleasing them.

We want to spoil them, if they like the spinning toy.

But that must be replaced by things fit for their age.

It's OK. Slow, slow.

Hi!

- Hi! - Hi!

Kick, kick! Arms extended.

Don't touch the floor, Derick!

Don't touch the floor.

Helena, sit.

I have hands.

To play the drum!

Come, sit. Stretch your footie.

Take the stick.

I have hands, Helena!

To play.

When I play,

it will sound like this.

I have hands

to play.

When I play,

it will sound like this!

I have hands

to play.

More, Helena!

When I play,

it will sound like this!

We must know how to do research.

How to do research to people close to us,

either be brothers, children,

cousins, daughter of our best friend,

In any form, we must do research.

This implies efforts must be made not only by her side.

It's not only her that makes the effort

to improve in the therapies, to learn, to adapt.

But also the ones around her must make the effort to improve

and make it happen.

Helena has taught me so many things.

My daughter, Helena, my child,

she has taught me how to live much better.

Helena, her birth, has taught me to live a better life.

Her autism has taught me to be a better person.

I have learned to live life in general.

Not only life with her, but life in general.

Helena and the special people

they take you to the deep, life will no longer be shallow.

They teach you life beyond conventions.

Life beyond society's guidelines of what should be.

They invite you to the deep, to deepen in their knowledge.

This is a very complex way to live.

When you accomplish that,

when that complexity becomes in achievements,

research outcomes, findings, to put it in words,

then delight is infinite.

This is a privilege, this is really a privilege.

Although there's a lot of pain, although the effort is high.

Despite the amount of problems, this is a privilege.

It's an absolute privilege. Helena is a privilege.

I'm done.

Happy birthday to you!

Happy birthday, Giovanni!

Happy birthday to you!

Blow, Giovanni. Good!

Let's cut the cake, Giovanni.

Happy birthday!

Happy birthday, my beautiful boy.

Happy birthday.

In a few words, on behalf of all our family,

specially Helena, who's seven years today,

we want to give you this year a very special activity,

that Helena gave us something to tribute her life,

and to tribute, let's say, all your solidarity

and your support.

As many of you know, this year was hard for Helena.

But we're happy since Helena has improved a lot

these last months.

Welcome, everybody. Enjoy yourselves. Thank you.

Hi, Lilian! How are you?

Lilian! Lilian!

Water, water!

Come, let's go to the room. The room. Come!

IN LOVING MEMORY TO DR. LILIA NEGRÓN (1940 2010)

SOMEBODY'S OUT THERE

IN THE LATE 70S AND EARLY 80S, DOCTOR LILIA NEGRÓN,

PIONEER IN VENEZUELA IN THE RESEARCH, DIAGNOSIS,

TREATMENT AND DIFFERENTIATED CARE OF PEOPLE WITH AUTISM,

FILMED HER FIRST PATIENTS,

IN AN IMPRESSIVE EFFORT TO RAISE AWARENESS

AND SPREAD KNOWLEDGE AND INFORMATION ABOUT AUTISM.

THIS FILM IS NOT JUST A MODEST TRIBUTE TO DOCTOR NEGRÓN,

IT IS ALSO OUR COMMITMENT TO COMPLETE HER EFFORT

TO DOCUMENT AND SPREAD THE UNIVERSE OF AUTISM

USING AUDIOVISUAL MEANS.

THIS FILM IS DEDICATED TO

ALL THOSE PEOPLE IN THE WORLD LIVING WITH AUTISM,

AND TO THOSE WHO TAKE THE HUMAN LEAP TO CONNECT WITH THEM,

MAKING AN EFFORT TO UNDERSTAND, COMMUNICATE AND CARE FOR THEM

WITH LOVE AND DEDICATION.