Translator: Daniela Claro Reviewer: Leonardo Silva
Autism is a lifelong developmental disability
where the affected person lacks the natural understanding
of how to interact with other people,
suffers from various sensory issues around lights and sounds and so on,
and is sometimes completely unable to regulate their emotions,
amongst the other things.
At least, that's what we were told.
And like most parents of autistic children,
it's what we believed,
until our experience showed us otherwise.
Shortly after turning one,
my son, Daniel, started to exhibit some unusual behaviours.
He started to forget the words that he'd learned
and spend more of his time staring into space.
At first, we thought he was being reflective,
but it soon developed into an increasing withdrawal,
until eventually, he was spending most of his time lying on the floor,
rolling a toy car backwards and forwards in front of his face.
There was no communication or eye contact by this time,
and if we tried to make contact with him, by using his name especially,
he would just growl and push us away and go back to what he was doing.
And he even lost the ability to make consonant sounds or to process solid food.
We had to go back to puréeing everything
and spoon-feeding him in front of cartoons.
And he became prone to the most intense and prolonged meltdowns,
and once they began, there was nothing we could do to console him.
It was totally distressing,
especially when he resorted to hurting himself in frustration.
It was a clear case of regressive autism,
but the doctors told us not to worry.
They said that every child has their own development curve;
we should just keep an eye on it,
and if we were still worried in a couple of years,
we could go back and talk to them again.
We couldn't have imagined a couple more years of that level of uncertainty,
so after a long and exhausting process of insistence
and then several more months on a waiting list,
we did eventually get to see a paediatrician
who put the wheels in motion
for an assessment and eventual diagnosis of autism,
but with nothing to actually help us in the meantime.
We had no idea how to manage this unexpected turn in our son's development,
but it seems that the health professionals didn't either.
So one of the most valuable decisions we made
was to step outside the traditional medical root
and to find our own way to look after our son.
All we had was the internet,
full of its wild promises of miracles and cures,
each one with evocative testimonials and stirring videos and a huge price tag.
Where to start?
How to find something genuinely useful amidst all this marketing hype?
In times of difficulty, my wife and I both tend to rely very much on our intuition,
and fortunately we tend to converge.
And so, when we came upon the very understated website of the Mifne Centre,
a small clinic in a village in the north of Israel
which specialized in treating families with autistic toddlers and even babies,
we both felt that there was something there.
We didn't have any reason to, we knew nothing about them,
but we both had a strong feeling
that this was a place that could really turn our family's life around.
So we did our research, we talked to them,
we found other people who had been there and talked to them,
and eventually, we decided to take the plunge and go there ourselves.
And I remember,
on the journey from Tel Aviv up to the village Rosh Pina where we needed to go,
I was suddenly full of doubts.
I suddenly started to think,
'Well, what if we arrive there and there's no clinic at all?
What if it was just a big marketing scam to take all our money,
and we've got nothing left to try anything else?'
But fortunately, it wasn't.
Fortunately, there was a clinic there,
and they spent the next three weeks just treating our family.
And there was nothing apparently remarkable about what they did.
They simply basically played with him, one on one, in a room,
for six hours a day, him and a therapist,
and they alternated the therapist every hour or so.
But they did it in such a way that they created an environment in that room
that was free from the onslaught of sensory stimulation
that would have been coming at him in normally daily life,
which we wouldn't have necessarily remarked as anything special,
but which he processed differently.
But probably even more importantly,
it was protected from the very subtle emotional triggers of stress
which would've been coming at him as well
which we would have been totally unconscious of.
These would have been things like our unexpressed expectations
and disappointments and doubts and fears about the future and worries
and all of those sorts of things.
We wouldn't have vocalized anything,
but he would have intuitively picked that up,
and he would have been constantly knocked off balance by it.
And when he was no longer being knocked off balance by those things,
the therapist was then free to work on evoking his inner sense of trust
and his inner sense of wanting to form
some sort of relationship with another person
and derive some sort of satisfaction from that relationship.
That was really key in bringing him out of himself,
and when that was done,
she could then work on expanding his tolerances of the varies stressors
so that eventually
he'd be able to spend increasing amounts of his time outside the room,
drawing on the inner strength that he was building up in it.
But that was all for the future.
The immediate results were really impressive as well.
Within a few hours of arriving,
they had him sitting at a table, with a spoon in his hand,
feeding himself solid food, with a big smile on his face.
It was totally unthinkable.
There were setbacks and challenges along the way, of course,
as you would expect if you're transforming the quality of somebody's life,
but from that day, the trajectory was constantly upwards.
And while we were there, we were trained as well,
thoroughly trained to implement this method when we got home,
which we did with the help of another therapist we brought in
who knew the method as well.
And very soon, the meltdowns receded, he became more stable and balanced
and for the first time we could remember,
we were able to create a really meaningful relationship with our son.
They told us that after about six months, his speech would start to return,
and after about four,
he was starting to understand what we said to him
and he was using single words himself.
And this video is an example of how engaged he'd become
just five months after returning from Israel, aged two and a half.
(Video) Guy Shahar: Is it monkey?
Daniel: No.
GS: Is it elephant?
GS: Elephant?
GS: No. Is it birdie?
Daniel: No.
GS: Is it monkey?
(Daniel laughing)
GS: It's doggie!
GS: A couple of years ago, he started at a mainstream school,
where he's well looked after,
and he's basically a contented and balanced seven-year-old boy now.
There are some challenges and difficulties,
but nothing anywhere near on the scale
of what we were led to believe that we would have to face.
But this talk is not about my son or my family.
It's not about parading our so-called achievements
or some sort of triumph against adversity,
because that's not what they are.
Our story raises far more fundamental questions than that.
Because if, as we were led to believe, autism is a lifelong condition
and if it's characterized by sensory issues
and issues of emotional regulation and so on,
then how is it possible that this boy, in such a short period of time,
went from being totally resistant to any form of communication,
utterly dependent on others for meeting his most basic needs,
to becoming the delightful, calm, fully engaged individual you've just seen?
I don't believe that Daniel was cured of autism.
I think autism is a lifelong condition,
but it's the nature of that condition that we've been misunderstanding.
We see people with autism often having sensory issues and so on,
and so we assume that those things are part of autism or a symptom of autism,
or that autistic people's brains are somehow hardwired
to be susceptible to these issues.
But what if those things are not part of autism at all?
What if the autistic condition,
by its nature,
is not one of incapacity or disability,
but simply one of profound sensitivity, in the most positive sense,
which, given the right environment,
could lead to a flourishing and impressive life,
with a lot of great value to bring to the rest of us?
In my experience,
I see the autistic condition as one of genuine selfless goodwill and idealism.
I don't see the autistic child as being separated from their surroundings.
It's quite the opposite.
I see them so deeply connected to their surroundings
that it's almost impossible for them
to prevent themselves being overwhelmed by them.
Hence, the need for some sort of protection.
As my son's inner strength was growing,
as a result of the therapy that we were giving him,
and that need for protection reduced,
we could see that interconnectedness with what was going on around him
really come to the fore.
Any sign of pain or distress to somebody else
became a source of pain or distress to him.
Even a story, and even a picture in a story book,
of somebody looking sad or angry
was almost overwhelming for him.
We had one beautiful book about a cat and a dog who lived together,
and one day, the cat was out and the dog got hungry and ate the cat's food.
We weren't able to get any farther in the story than that
because at that point, Daniel screams, 'No!' and slammed the book shut,
and we couldn't get in to look at it again for several weeks.
He was worried about how the cat would feel coming home to an empty bowl.
If he saw another child looking upset in the street,
his instinct became to go up to that child,
give them a hug and maybe a kiss,
and assure them that everything is OK.
And even now,
if he sees somebody at school, who he connects with, looking sad or crying,
he'll come at home and he'll lye on his bed and he'll worry about that child.
How should we understand this?
Is he just too sensitive or too soft?
Does he just not understand how to put things in perspective
or how to behave in the correct way in certain situations?
Again, I would say the opposite.
I see his behaviour as being motivated by the impulses of his heart,
which don't allow him to hurt anybody or anything else,
even if they've hurt him.
And when that's not reciprocated
and he can become the subject of mockery or derision
simply for being a little bit different,
that must be totally disorienting, confusing and painful for him.
Still, he maintains that the people who do that are not bad people;
they're just good people who haven't yet learned to be the best that they can be.
But by contrast, whenever he's been in one of those vary rare social situations
where people are present in that unusual condition of openness
and unconditional acceptance and support and positivity,
we've seen a different child.
A couple of years ago, we took him to a heartfulness meditation centre in India,
and he became so naturally integrated there
that nobody who would have looked at him and thought
that there was any sort of issue or problem, or certainly not a disability.
That was the sort of environment in which he could thrive
and in which probably we all could,
if we were prepared to let go of our fears and inhibitions.
So who is it who's got the problem here?
Is it the autistic person, who is ready, yearning even,
to live in an open, collaborative, inclusive, mutually respectful,
loving world?
Or is it the rest of us,
who created an environment of fear and adversarial competition all around?
Is it the autistic person,
whose heightened and refined senses do best in a calm environment,
where they can be nurtured and deployed for the benefit of everybody?
Or is it the rest of us,
who bombard ourselves with bright lights and loud noises
to try to instil some artificial sense of excitement in ourselves
to divert us from or compensate for the lack of meaning
that we perceive in our lives?
Is it the autistic person,
who only wants to bring positivity and support to other people?
Or is it the rest of us,
who fill our space with depictions of tension and cruelty
that we habitually titillate ourselves with?
And we add our own cruelty to the mix,
that we direct at each other and at them,
not realizing how intensely painful that is for them.
In a situation like this,
is it any wonder
that autistic people can sometimes appear to be shut down or cut off?
I often think of it in terms of how we would feel
if we had to walk through a war zone whenever we needed to go anywhere,
with people being cruel and ruthless to each other,
with blood and death and destruction and mutilation all around,
and the constant fear that we could be subject to that at any moment.
How long would it be before we were rocking and shaking
and developing fussiness with food or whatever else
to try to retain some degree of control over this world
that has become intolerable for us?
How long would it be before our neural pathways realigned themselves
to conform to what you would expect from someone with a disability?
The National Autistic Society here in the UK
recently released this very short but powerful film
which attempted to show just that,
just what it must feel like for an autistic person
to go through daily life and daily activities.
It was called 'Too Much Information' and it asked the question,
'Could you stand more than a minute in a shopping centre?'
(Noise of plastic bags)
(Coins falling on the floor)
(A woman sucking her drink)
(Air balloons rubbing)
(Perfume being sprayed)
(An alarm going off)
(Wheels rolling on the floor)
(Alarm)
(A boy sobbing and crying) Woman: It's fine, isn't it?
Boy: I'm not naughty.
I'm autistic.
And I just get too much information.
GS: So, depending on the environment that we create around an autistic child,
they have the potential on the one hand to thrive,
to become a source of joy and inspiration to us
and to even help us to become more as we would ideally like to become.
And on the other, they have the potential to be overwhelmed,
be on the point of what they can bear,
to shut down almost completely
and to require a level of practical care that would be completely unnecessary
if we were just a little mindful of how they experience the world.
I don't see autism as a set of symptoms.
I see it as the beautiful condition that underlies those symptoms
and makes them necessary
only if the right environment is not available.
It's a condition of innocence, idealism, goodwill,
and a readiness to put other people's needs above their own.
We could call it love.
That's why I set up the Transforming Autism Project,
to empower parents and carers of autistic children
to identify those values and bring them into their children's lives
in real and practical ways,
so that they get a chance to live their full potential.
Because if we could create a world around them
in which we were all motivated by such values,
I can imagine many of those who currently rock and fail to communicate
being fully integrated in such a world.
Some of them might even become natural and pioneering leaders
of absolute integrity,
with the clear purpose to safeguard the well-being of others
as the best in their nature was able to shine through.
It might sound like a naive and clichéd utopian fantasy,
but isn't it really just a hidden and often ignored ideal
that each of us carries within ourselves silently?
Let us bring us as much as possible of these values into our lives,
at least for our autistic children to benefit from.
Thank you.
(Applause)