AttitudeLive - Unlocking Autism

(Ross) One of the really hard things
I found at the beginning

was I hoped Claude would be mild,

and nobody could tell me
at the beginning

where he was going to be.

There was an awful lot of unknown,

and so I'm hoping it's
all going to be fine.

And then another day you'd be
completely overwhelmed by the idea

that he's going to be non-verbal
and severely disabled.

It's a really tough process to go through

to accept that this is what
I've got and it's okay.

Martin and I often say, well we couldn't
love Claude anymore if he was normal.

I mean, it would be nicer and easier

but we wouldn't love him anymore.

And we don't love him any less
because he's the way he is.

But it takes a lot of time to get
to the acceptance that

that's Claude and that's fine.

Ross Hill has spent her working life
studying the mysteries of the mind.

She's a neurologist, a doctor, and
a specialist in disorders of the brain.

(Ross) Claude come here please.

But when it comes to her own son
the mystery remains.

(Ross) He's got some shorts,
we'll just find him some undies.

Claude undies on please.

(Ross) I can remember when
Claude was first diagnosed,

thinking I'm not that person,

I'm the person on the other
side of the desk.

I'm the doctor telling the family
that you've got this problem.

I never saw myself as the person
on the other side of the desk.

I was like I can't do this,
and feeling overwhelmed by it.

But you actually have no choice,

pretty much.

You have to actually still get up
and do all the benign,

drudgery things you do everyday.

and you don't have any choice.

(Ross) Claude sit on the couch please.
Claude sit down.

(Claude) Moans.

(Ross) He mostly is on the move
and when he gets very tired

he will sit on the couch for a little while.

He likes to twirl and if he can't
find something handy like a scarf

or belt, he'll just get a long
piece of toilet paper.

(Ross) He mostly likes being
where people aren't.

If people come over to visit,

he'll usually absent himself

and he'll be wondering around
the garden.

(Martin) He's just endlessly roaming around,

and anything that has changed

from the last time he was in that spot,

he will pick it up and walk off with it

and examine it.

And eventually lose interest
in it and toss it.

Now it seems as though throwing things
into the water is endlessly fun.

So your cellphones, your electronic keys,

your remote controls.

(Ross) It's the first place you look
if you can't find anything,

especially if it's a smallish thing -
go and have a look in the pool.

Claude appeared to develop
just like any other baby

until the age of two.

Then he began to regress,
losing language

and becoming fixated on things like

watching a cartoon program
over and over.

As a neurologist, Ross was keenly aware
of what that might mean.

(Ross) There are some core features that
you see in autism,

and the first is to do with social,
and communication, and interaction.

And the second one is to do wtih
stereotyped behaviors.

So for Claude, the stereotype thing
is twirling things,

and they can be visual as well.

Twirling the wheels of the car rather than
pretending to drive along the road.

And then you can have that with or
without intellectual impairment.

So you can have normal or
above average intellect,

but have those social
and communication difficulties

and that need for rigidity

and sameness in those
stereotype things.

(Ross) Claude come sit down please.

(Ross) So you can see Claude
has the full house,

that he's got the intellectual impairment

and he's got almost no language.

And he's got the stereotyped behaviors

and almost no real social interaction
and communication.

So that places him at the severe
end of the scale.

(Claude) Moans.

(Ross) This is the sort of noise he
makes a lot of the time.

And I'm not sure whether he
does it because

it blocks out a lot of the
environmental noise

and it's predictable.
You know, it's his own sound.

He seems quite happy.

This is one of his perfectly happy noises.

He has a variety of clicks and
other sounds that he does.

Claude?

But yeah this is normal for Claude.

Squeeze?

This is a sensory thing and
it's well documented

that a lot of people with autism
spectrum disorders like firm pressure.

So they just like to be
squeezed and squashed.

And it must be something sensory that
they feel more comfortable with it.

(Ross) What is it Claude?
I...?

(Claude) Squeeze.

(Ross) The only way to get him to talk
is for him to really want something enough

that the only way he'll get it
is if he says something,

because he doesn't use words very
much at all, even words he's got.

So if you can find something
that he really likes

and then make him use a word to
get it, like squeeze,

or something he wants to eat,

it forces him to use some language.

Otherwise I don't think he
really understands

what the point of language is.

(Annabel) Hi Dad

(Martin) Hi Annie how was school?

(Annabel) Good. Hi Mum.

(Ross) Hi Annie how was school?
(Annabel) Good.

(Ross) Have you seen Claude?
(Annabel) No.

(Ross) Can you just check on
him for me please?

(Annabel) Hi Mr C...hi
(Claude) Hi.

Older sister Annabel is one of the
few people Claude responds too.

Too much noise, too much touch
gives him sensory overload.

But with Annabel he is content.

(Annabel) He doesn't really live in
the same world that we live in

in the sense that he more
lives in his head.

We tend to think of it like we're tools,
so he uses us to get what he needs,

whether he knows who we are or whatever
I'm not sure. I would like to think so.

He's definitely more
comfortable around us

than he is around other people.

But we're not really sure what goes
on in that head of his.

So Claude would have room to roam,

the family moved to a farmlet
in North Auckland.

They've tried every avenue to help Claude,
hundreds of hours of therapy,

expert advise and medicines.

(Ross) We feel as if we've done
everything that we can do

along the way to try and help him

and try and understand what's going on.
(Martin) Every therapy, every diet,

every supplement, every drug -
it's all been tried.

(Ross) We've done as much as we could,
which is what you want to feel

that in the long run we've tried
everything we could

that was safe and that we were
comfortable with,

so we've done a lot over the
years with him.

And it's hard to know how he would
have been if we hadn't done all that.

(Martin) Hi Claude are you going to come
and have some dinner?

Have you been playing the piano?
Bing, bing, bing...

Good boy. Again?

For every parent with an autistic child,
the big question is why?

(Ross) There are a lot of things that
fall into autism spectrum disorders,

it's a very complicated thing and
you try and figure out

can you find what is the underlying
problem for Claude?

And so you do all the tests you can,
but no, he's a mystery.

And the brain as it develops
is completely mysterious,

because he seemed to be on this
trajectory of improving

and then things changed and he lost a lot

of language and skills he had.

Trying to understand what's
going on in the brain with that...

is really difficult.

Unlocking the causes of autism,

it's the focus of at least a dozen
studies worldwide.

So when Ross Hill got talking with
a geneticist friend

they decided it was an opportunity

for a leading University like
Auckland to contribute.

Minds for Minds is a study that
brings together

scientists and the autism community
with a common goal,

finding the genetic causes of autism.

Okay team just to reminder that whatever
information that we send out,

include this Minds for Minds logo.

Our dream is that we'll be able to focus
down on the same group

of families that are affected,
and bring to our understanding

of those families, different aspects.
So genentics is one aspect,

microbiology is another aspect,

their psychological diagnosis
is another aspect.

And we're inviting anybody
who has an interest

in the research of autism to
join Minds for Minds.

(Ross) We're part of a world effort
to try and sort this out.

We'd like to be the best and the first
to make some major discoveries.

It's exciting, but it's a completely
different thing when you have the passion

of this is dealing with the
condition that my child has.

It's really important for us to have
controls as it were

so someone who's on the
Autsim spectrum,

family members who are unaffected,

and also members of families
with no history of autism as well.

Well you go back to what it started with,

which is families with more than

one affected child...

You could say, more than one
affected child

and one of them is a girl.

Autism is much rarer in girls,

four out of five on the spectrum are male.

Jessica is on the severe
end of the spectrum.

And her two brothers also have autism.

(Stephen) Because of our children
it can be a bit...

(Maria) Daunting experience.

(Stephen) Especially when you
first meet someone.

We tell them we have our kids
and what's wrong with them,

and they go, "Oh...okay"

And if anyone comes to the house
they don't know how to act or react

when they see Jessica-Leigh playing up.

(Stephen) Settle down okay.

Come on make your bed.

(Jessica) No!

(Stephen) Come on get off.
(Jessica) Screams.

She usually tries to get the door open.

And she tries to attack as
when she gets really cross.

She usually pushes us
away or pinches us.

(Maria) Because if we don't lock
the front door, she just gets out.

(Maria) We have had her get out in the early hours of the morning

and go to the next door neighbors.

And the neighbor has come
knocking on our door at 7am

saying, "Have you missed somebody?"

(Maria) You can't reason with Jessica.

Jessica always tries to get
what she wants.

(Maria) Jessica toilet time then car.
(Jessica) Arrggh!!

At eight, Jessica is non-verbal
and still in nappies.

Her parents are following a
behavioral program

of visuals and rewards,

with little success so far.

(Martin) We're going to the toilet.
(Jessica) Cries.

(Jessica) No!
(Martin) Yes!

(Martin) Do you want to go out?
(Jessica) No!

(Jessica) No! No!
(Martin) Come on.

(Martin) Sit on the toilet.
Come on Jessica, sit on the toilet.

(Jessica) Cries.

(Maria) You don't have many friends

and you don't have any people
to come and say hello.

(Stephen) Sometimes it's hard because
people don't want to get to know you.

(Stephen) Why we don't sometimes invite people around a lot is becuase

we get embarrassed because
the walls are just stripped

where Jessica-Leigh has ripped
all the paper off the wall.

It's overwhelming sometimes,
it does get to you.

It puts a strain on our
relationship as wel.

(Stephen) Doesn't it?
(Maria) Yes.

A thousand families have put
themselves forward for the study.

Their DNA is collected,
ready to be sequenced in the US.

What they're looking for are differences

or mutations in the DNA of
people with autism.

(Ross) There's no doubt, because
there have been a lot of studies

looking at the incidences and
prevalences of autism

and it has definitely gone
up significantly.

There is a very strong
inherited component,

if you have one child in the family,

you have a 10-20% chance that
the next child will also have autism.

I've just loaded the gel.
I'm going to let that run

for about an hour and
then I will image it.

(Ross) People have been looking,

but of all the genes that
have been found so far,

none of them account for more
than 1% of people with autism.

So they're chipping away at the
edges and finding genes,

but there's still a huge amount
that we don't know.

We were astounded and we
remain astounded...

that hundreds of genes can cause autism.

And you think how can variations and

any number of hundreds of genes
end up with autism?

And quite frankly we don't
understand that.

And that's one of the big puzzles.

Claude we're going to go driving.

(Martin) Shall we bother with shoes?

(Ross) Yes, did you see I found them?

(Martin) Yeah, were they down
by the garden?

(Ross) Out by the spa pool

(Annabel) Claude don't bite it.

Raising Claude has changed everything
about Ross and Martin's lives.

(Ross) Your whole world is different
when you have a child with autism.

You're on a different road
to most other people.

Your life is not going to be the same
as the average family.

You're not the same as you were before.

It changes your perspective on
so many things.

The things that you were previously
worried about are unimportant.

And that's a gift because
you just figure out

what is important and what isn't.

While Ross has involved herself
in a Minds for Minds study,

Martin has changed his own pathway.

A company director and
a senior executive,

he's held top jobs like
CEO of IHug.

Two months ago he took up the
reigns of Elevator.

An agency that assists people with
disabilities to find jobs.

On this Saturday morning it's
a working bee

at the Elevator workshops and
a chance to involve Claude.

(Martin) I thought it would be nice
to bring him out and introduce him

and show him where I work.

I don't know how much he takes in,
but he's happy and wondering around.

The big thing is that Claude is
somewhat ADD,

as you'll see he never sits for very long.

So he is wondering around and wants to touch, bang and feel everything.

So health and safety is the big issue.

Ok, I think we'll just leave that.

I know it's exactly what you'd
like to be doing.

It might be a bit noisy around
here for you mate.

(Martin) Going anywhere, if you go
to the supermarket,

you need somebody to do the shopping,

and somebody to keep an eye on Claude.

One minute he's beside you,
the next minute he's gone

and literally you can't find him

and you've got an all points bulletin
out for half an hour or an hour.

And then you find him tucked
up in a corner.

Or he'll just go along and touch things
on the shelves

and suddenly they're all on the floor.

He's not trying to break them,

he's just feeling and sensing them

and likes to bang them to make a noise.

Pick up the feijoas

and over the back there.

(Martin) I've never seen a feijoa
tree quite like that.

Claude pick up the feijoas please.

Some of the work being investigated here
has a ring of science fiction.

Microbiologist Mike Taylor is
looking at the connection

between our gut and the brain.

Could changes in the chemistry of our gut
be a factor contributing to autism?

All of us have huge amounts of
bacteria in our guts,

up to about 1-2 kgs per person,
so massive numbers of these things.

And have very large affects
on human health.

And just in the last few years it's
become very apparent

that these gut bacteria are involved

in a sort of communication with the brain.

and have a role to play in a number of neurological conditions including autism.

(Ross) There's a huge amount
going on in terms

of understanding the actual what is wrong

with the hardware and the software
in an autistic brain.

And the list is very long of the
things that are not right.

So people are really trying to
tease that all apart.

The ultimate dream outcome would be

some sort of microbial therapy for autism.

So perhaps there's a particular
type of bacteria,

a bacterial product, some
chemical perhaps

that the bacteria produce that we could
give to someone as a probiotic

or in a milkshake or yogurt.

And that might alter their
bacterial community

in a way that improves some of
the symptoms of autism.

(Ross) The main thing is
that he's actually...

most of the time really happy.

And that's the joy in what makes
Claude lovely to have around

most of the time because he's happy.

The science may not change the lives
of Claude and Jessica today,

but the possibility of greater
understanding is enough.

What it's done is prompt our family
to get heavily involved,

because it has the potential to help
other people in the future

to at least understand the
causes of autism.

(Ross) It's not going to make probably
any difference to Claude,

but it's the feeling as if it's worthwhile
having been on this road with Claude

rather than just getting through life.
But if you could actually say,

because of Claude and the
condition he has,

I can apply the many years of
study that I've done

into doing something useful
in the big picture.