My Child, ECT and Me Our World

Some viewers may find these images upsetting.

16-year-old Jonah is about to have electroconvulsive therapy, ECT,

today, in America.

We are doing bilateral electro placement at 20%.

Our cameras have been invited for the first time to film this

controversial treatment on a child.

Modern ECT is a very simple, quick, safe procedure.

Some call for a total ban on ECT for children.

It's traumatic brain injury, very much like somebody who's just

endured a severe concussion.

But Jonah's mother, Amy, is campaigning to allow

more children like him to have the procedure.

There is no doubt that ECT is the only reason that Jonah has

any quality of life whatsoever.

Jonah is autistic, and before the treatment, he used to

lash out and punch himself.

Her nose is busted and she was bleeding.

She was constantly punching herself.

I was convinced that our love would heal her.

ECT is ready used in these cases, but some families feel

it is their only option.

I have to have hope that it will be a miracle for Sofija

because we need a miracle.

So those were the first pictures we ever got of her.

So this was Sofija in the orphanage?

Yes, she was probably two years old in those.

Hold on!

In 2009, US Army intelligence officer Chad Calvaresi and his wife

Kaci travelled to Serbia to adopt five-year-old Sofija.

Sofija had spent much of her short life suffering neglect and abuse

in Serbian orphanages.

And she was autistic.

Hold on, hold on!

Sofija is one of the most charming little girls.

We fell in love with her.

Chad and Kaci already had three children.

Their youngest, nine-year-old Seth, was also autistic.

They wanted to use their experience to help a child unlikely

to find adoptive parents.

The first day we were with her she hit us all and bit us

all and pulled my hair and punched our youngest son.

Determined to give Sofija a better life,

they brought her back to America.

That first Christmas she was writing and reading,

it was just amazing.

Jesus loves me, Nessa loves...

We had great hope.

I'm gonna try not to cry...

We had great hope and we kept saying, I can't wait to see

where she will be in five years, because at that point,

I was convinced that our love would heal her.

But over the next few years, Sofija became increasingly

violent and uncontrollable.

The fall of 2013, she had an incident on a school bus

where she agressed towards another student on the bus and got out

of her seat and jumped on the bus driver, and within a week or two

we were seeing it at home.

It just increased and increased and increased, to the point

that we weren't even sure how to keep her safe.

It was the worst case scenario.

We had to bring her to the ER twice.

Oh, my gosh.

The last time, where she had beat herself so bad,

so her nose was busted and bleeding, her lips

were busted open and bleeding, she gave herself black eyes

and then this is her cleaned up all the blood.

But she had blood all over her face.

It is estimated one in ten autistic children seriously self harm.

No one really knows why.

Some theories link it to anxiety, caused by an overload

of sensory signals.

Others to frustration.

Autistic children can struggle to communicate.

Behavioural disturbances is very common in children with autism,

and oftentimes is readily amendable to treatments, but sometimes

behaviours just can't be easily curtailed and sometimes become quite

dangerous to the child.

Is she aware that she is doing this to herself?

She is.

It's like she is caught in the fight or flight mode.

So she's fighting, but she is fighting herself.

Afterwards, she is dealing with pain from the injury she caused herself,

but she's also dealing with the sadness because you can

tell she realises that she lost control and she is upset

that she hurt herself.

When she was aggressive towards me, my instinct was, as a mum,

I just wanted to grab her and hold her and hug her and wait.

And she got so big and strong that I couldn't do that.

In early 2016, for her own safety, Sofija had to leave home and go

to a secure unit at the renowned Kennedy Krieger Institute

for brain disorders.

It often took three highly trained care staff,

using special techniques, to prevent Sofija injuring

herself and others.

We've tried years of behavioural therapy, years of medication

and we have proven time and time again that,

for Sofija, these don't really work.

So, you know, like every other mum dealing with any problem

with their kids, I went to Google and said -

right, Dr Google, autism self injury treatment.

And I started finding some articles on ECT.

Kaci came across author and campaigner Amy Lutz,

whose own violently autistic son Jonah has had ECT for five years.

14 is always blue, 13's always green.

Well, ECT has been transformative for Jonah's life and our life.

We went for a period of time, for years and years,

where Jonah was raging often multiple times a day.

Ferociously.

And the only reason he is able to be at home, that he is able to be

with us here in Atlantic City, he is only able to do that

because of ECG.

Amy runs a charity offering advice to parents in a similar position.

And Kaci has arranged to meet her.

Nothing else that we've tried has given her enough

improvement to keep her safe, so how can we not take that chance?

Right, I think that's why for us ECT was not a hard decision.

So many people asked us about when we sent Jonah

to Kennedy Krieger when he was nine, and when we ended up

getting ECT later, wasn't that such a hard, hard decision,

and for me, it was, no, it was the only decision.

We went into it very enthusiastically because it provided

some hope that we would be able to provide something

which might actually work, after all these failed attempts.

Many are far less enthusiastic.

This hard-hitting campaign video is made by the Citizens Commission

on Human Rights, a group founded by the Church of Scientology,

who oppose most psychiatric treatment.

Some human rights organisations call for a total ban,

especially for children.

Leading the fight against ECT is Dr Peter Breggin,

who has long campaigned against the psychiatric establishment.

After seeing for myself the desperation of Sofija's

situation, I want to know why he thinks ECT should

never be an option.

It's traumatic brain injury, TBI.

The electricity not only travels through the frontal lobes,

because that's where the electrodes are, and that's the seat

of intelligence and thoughtfulness and creativity and judgment,

it also goes through the temporal lobes, the tip of the temporal lobes

a little further back, and that's the seat of memory.

So you're lasting with an electric current the seat of memory.

You're damaging the very expression of the personality,

the character, the individuality and even, if you believe,

the expression of the soul.

Jonah is heading into New York for his latest ECT session.

He is one of just a few hundred self-injuring children

to have the treatment since it was introduced

a decade ago.

With the long-term effects not known, its use on children

is blocked in some countries and a handful

of US states.

But Jonah's doctor is so convinced it's effective and safe,

for the first time he's allowing Amy and our cameras to witness it.

I think almost all of the problem with ECT is misinformation,

misunderstanding about what modern ECT is, and continued perpetuation

of the sensationalist portrayals of the past.

That's the problem.

Nervous, Amy, about seeing ECT?

I am, yeah, curious because I have wondered about it, but it is clearly

not aversive to Jonah.

He doesn't fight it?

No, not at all.

Jonah, are you able to lie down on the bed?

Lie down, Jonah.

Jonah, I'm going to start putting some of these sticky pads on you,

if that's OK?

I'm going to clip this to your shirt here.

OK.

Jonah, what's your name?

Jonah Lutz.

When is your birthday?

January.

Jonah has had around 260 ECT sessions.

The modern treatment is carried out under general anaesthetic,

with muscle relaxants to prevent violent convulsions.

And we're doing bilateral electrode placement at 20%.

Doctors admit they don't know exactly how ECT works.

There is a lot of interesting new neuro imaging research showing

that ECT actually reverses some of the brain problems in the major

psychiatric illnesses.

We don't know exactly why it works in people with autism

and superimposed mood disorders, but we think it probably

re-regulates the circuits in the brain that are disregulated.

Dr Kellner will administer just under an amp of electric current

in a series of very short pulses.

Treating at 20%.

The currant induces a seizure.

ECT specialists believe this, in some way, resets

the malfunctioning brain.

Any thoughts, Amy, now you have seen it?

I mean, it's not scary.

You know, there is a little bit of movement.

I've seen Jonah have a real grand mal seizure before

and that's way, way scarier.

It's kind of what I was expecting.

The ECT alleviates Jonah's self-injuring behaviour

for up to ten days.

But it's not a cure.

It's generally a very simple, safe, easy procedure like that.

There are still medical experts that are very sceptical that ECT does

anything particularly for children like Jonah,

and that think it's cruel as well.

I think those are uneducated criticisms and the way to counter

them is to show people what modern ECT is really like and show

them the results with patients like Jonah.

What about long-term?

Some doctors say there can be memory loss.

Well, we know about long-term effects because there are patients

with more typical indications for ECT who have

been getting maintenance ECT for many years,

some for decades, and there really are no cumulative adverse effects

for the treatment, so it seems to be very safe,

even to continue it for long periods.

Worldwide, about a million people have ECT each year.

Most for severe, often life-threatening depression.

Around 1% are under 18.

Memory loss is the main side effect, though the severity and even

the definition is hotly disputed.

Studies by ECT doctors suggest most memory lapses are very short term,

with memory function soon returning to normal.

Those against ECT have produced surveys showing more

than half of patients suffer long-term memory loss.

My life has lots of black holes, which represent memories restored...

I don't remember my wedding day, I don't remember my husband

putting a ring on my finger.

When the person wakes up, they have all the signs, if they can speak,

of traumatic brain injury.

They may not know who they are or where they are all

what has happened to them.

A referee would stop a boxing match if the boxer got hit and looked

like something coming out of ECT, because they come out concussed.

In Baltimore, Sofija has been in the Kennedy Krieger

neurobehavioural unit for seven months, and there has

been little improvement.

Parents Chad and Kaci are desperate to go ahead with ECT.

But Dr Wachtel wants to exhaust all other options first.

Most of our kids who come here do not need ECT and people

are rightfully cautious when it comes to children

and children with special needs.

Beyond that, ECT is very much a treatment, rather than a cure.

You get to the issue of needing ongoing ECT which can become

inconvenient and expensive.

If we can avoid that then we would certainly like to offer

something that is more manageable.

We are not allowed to film in the secure unit, so I catch up

with Kaci after she visits Sofija.

How was it?

It was a rough day.

A rough day?

Yeah.

When I got there, she had been...

I did even know what triggered it, she was in a big burst of behaviour.

It is heartbreaking and it scares me, because I want to be

able to bring her home.

I have cried a lot today because I don't know how

we can bring her home.

When I told people I was coming to America to make a film

about children that get ECT, people are shocked.

They say that is barbaric, that is crazy.

I wish that people who don't understand the need for ECT

could spend a couple of days with Sofija.

This is where we are.

We need ECT and I have to have hope that it will be

a miracle for Sofija, because we need a miracle.

A month later, Sofija's doctors give the go-ahead for ECT.

Probably after the third or fourth treatment we started to see a marked

improvement in her mood, and an additional 30 to 40%

reduction, just in the sheer number of behaviours.

And in September, having been in the unit all year,

Sofija is allowed home to live with her family.

Sofija has been receiving intensive ECT for six months now.

The family have relocated to Florida.

The last time I visited the family I couldn't go

near Sofija for my safety, and for her safety.

Tonight will be quite an eye-opener.

Hello!

Hello, fellas!

Hi, Sofija!

I'm Chris.

Hi.

Hello!

Great to finally meet you.

I have come a long way.

What's his name, do you remember?

Mr Chris.

You remember.

I have a good eye!

Are you happy?

Are you excited?

Sofija has had 33 sessions of ECT so far.

The family say they have seen huge improvement.

Can I have my headphones, right now?

Look at me, take a deep breath.

I am excited!

When she has behaviours, they are much shorter, less intense.

She used to have bursts of behaviour where she was agressing

and hurting herself for hours.

Now it will be a matter of a few minutes and then she will calm down.

Mother, I need you right now.

You got me, girl.

When I return the next morning, there is quite a surprise.

One, two, three, four, five, six...

Yeah, girl, you got it.

One, two, six.

There you go.

Each weekday, Sofija has school lessons with

a specially trained carer.

My biggest concern was that she was going to lose quality of life,

that she would have brain damage.

Now she is back to loving doing multiplication and division.

Who is that?

A dog.

Yeah.

When she started ECT, she was doing zero academic work at all.

Good job!

But later that afternoon, six days after her last ECT,

Sofija's behaviour deteriorates.

Chad and her carer have to use approved restraint techniques

to stop her injuring herself.

Can I go to the beach?

You know the answer to that.

You said yes.

No.

What has sparked this?

I couldn't tell you!

I've taken any type of aggression, usually for one or two days prior

to her usual schedule of ECT.

This is usually what we see.

Every Friday, Sofija leaves home at 6am for her weekly ECT session.

I'm going to be...

Safe.

At first, Sofija's doctors were happy for us to film

the ECT procedure today, but then there was

a change of heart.

The reason they have given us is they are worried

about how the procedure comes across on camera,

particularly with Sofija, so that is it, we can't film

inside the hospital.

Two hours later, Sofija is on her way home.

We got there within 45 minutes of treatment actually happening,

and she was sitting up in bed talking to two nurses,

asking for Starburst Chapstick for her lips.

The only memory loss Sofija has had from ECT is she forgets

that the procedure happened.

Keep going.

Stop, stop.

OK, you've got to look that part.

It's pretty dramatic.

She is sharp as a tack.

She's absolutely sharp as attack.

ECT for severely self injuring autistic children like Sofija

is still in very limited use.

And without a long-term scientific study, it remains

highly controversial.

Sofija, do you want to hold this?

Now, Sofija's parents have no regrets.

They have their daughter back home.

She is a joy.

She brings us joy and she loves life.

She had zero quality of life.

What about the thought of ECT every single week

for the rest of her life?

It is overwhelming if I think about it but what future does

she have without it?

My hope is she does not need it for the rest of her life.

But at this point, I see it as a diabetic needing insulin.

It keeps her alive.

Literally, it keeps her alive.

It makes it possible for us to be able to have her in our home living

life with our family, and enjoying Sofija.

I love the way she pops back in, that is great!