The beautiful reality of autism | Guy Shahar | TEDxWandsworth

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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)

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