CONVERSATIONS WITH… An Autism Expert

Having himself recovered from severe autism as a child, Raun Kaufman now helps autistic children around the world get better.

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As a child who could not speak, Raun Kaufman was diagnosed with severe autism. The author, lecturer and former CEO is now director of global education at the Autism Treatment Center of America.

Raun Kaufman has his parents to thank for transforming his personal history ― they entered his world to build a relationship with him.

The Kaufmans developed a method that was based upon the idea that an autistic person is one who has difficulty connecting and bonding with others. This is counter to how autism is treated typically ― as inappropriate behaviours that need to be changed and discarded. Their programme is known today as the Son-Rise Program.

Raun, what do you remember of your childhood?
I was pretty young at the time I was diagnosed, and it was a pretty severe case ― I had no language. By the time I was 5, I had pretty much recovered, so I don’t have a lot of memory of it. But I remember seeing things differently. Like, if I looked at a face, what I’d see was something like what you’d see from the wrong end of the binoculars. Sounds sounded different. I remember my mum working with me, but it felt more like she was playing with me.

Is that what the Son-Rise program is, playing more with your autistic child?
The kid experiences someone playing with them, enjoying something they like with them, and it helps them grow their brain in different ways. We come at it from the inside. Rather than try to force the child to do something they don’t yet understand, let’s start by entering their world first.

Instead of trying to stop or redirect the behaviours, let’s join in, and do it together with your child...do it like you’re falling in love with what your child loves.”

So, all these [repetitive] behaviours that people are trying to stop ― it’s really soothing and important to the child. Instead of trying to stop or redirect the behaviours, let’s join in, and do it together with your child. Don’t just do it in the way of just mimicry, but do it like you’re falling in love with what your child loves. Because then, the child has something to relate to you with. You are actually creating a bond using that common interest.

And here’s the crazy thing, that’s how all humans have been creating relationships for thousands of years. Yet, when we try to help children on the autism spectrum, we throw out these thousands of years of knowledge, and say, how do we get this kid to stop doing what he loves?

So, you can actually recover from autism?
That goes to the heart of how autism is viewed. The fundamental view is that it’s a permanent state of the mind and that it’s a lifelong condition. So yes, we do talk about recovery and that’s controversial, for sure. I don’t use the word “cure” because it is not like a “magic cure” for every child, and every child is totally different. What I feel strongly about, is that you just can’t decide in advance for a 2-year-old, or a 5-year-old or a 12-year-old, what they’re not going to be able to do the next 50 years.

When I use the word “recover”, it’s not that I have learnt to “act” neuro-typical, but rather, that I have actually had the experience of being neuro-typical. There are many kids who haven’t recovered, but it’s amazing because even these kids have made such leaps and bounds in how they relate to people and how they relate to the world. We feel that we need to treat every single child out there like they are capable of recovery, so that we, the adults, are not the ones putting a limit on them.
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When the child does repetitive actions, like rocking back and forth, or spinning things, isn’t that something we want to stop?
A lot of the kids do repetitive behaviours ― they line things up, they spin things. That’s not the autism, that’s the sign of the autism. It’s the child coping and self-regulating the neurological challenge of autism. When you approach autism from the outside, you’re only looking at symptoms ― like the repetitive behaviours ― and not the causes, so we try to look at it from the inside. We look at the experience from the child’s point of view. A lot of the kids with autism have sensory processing issues and they see and hear things differently and they can get very overwhelmed by everyday sights and sounds that you and I wouldn’t even be fazed by. As a result, trying to address a behaviour doesn’t take that into account and simply alienates the child and drives him away.

Ok, so we build a relationship with him by “joining” him in what he loves to do. What then?
The child lets us in and becomes more interested in us. They actually do those behaviours less, and it even opens up a door [for us] to teach them new things.

It’s like the child has a little piggy bank. I come up to you, and I ask you for $10, but the piggy bank is empty ― there’s nothing in there. But if every time I come up to you, I drop a quarter in there, and then I come back in two months and I ask, is there $10 I can borrow, you actually have something there. It’s like we’re putting emotional money into his piggy bank, and when the light is green, there’s something to build on.

“It’s like we’re putting emotional money into his piggy bank, and when the light is green, there’s something to build on.”

When do I know I can start building, or start introducing the child to new things and new behaviours?
For children with autism, there are what we call “red lights” and “green lights”. For instance, the child goes to a speech language therapist for an hour, and he does his best. He was looking at the therapist and responding to the therapist. But right after, he’s on the spectrum, not responding, doing his repetitive behaviours.

The green lights are when they’re interacting, the red lights are when they’re doing things on their own. We hope to give parents the ability to see a little bit of what’s happening in their child’s brains. If their child is not looking and not responding, it means their child’s brain is in a state of overload, and “hey, I can’t take in any more information”. But if the child is connected and playing with you, it means that his brain is not overloaded, and kind of like open for business.

What do you do during a red or a green light?
The timing of the red and green light varies. For a red light, you do the “joining”, where you don’t teach or ask for anything. You join him in what he’s doing, build his trust and build the relationship. When you do that, you get more green lights. Now’s the time to teach and invite the child to do things they haven’t done before. You have to respect that the light can suddenly go red, and you can’t push it. You can’t run a red light, even when the temptation is to keep asking for stuff.

Kids with autism have sensory overload and often things feel out of their control. S,o they try to establish some control. If you have the people to love them trying to get them to experience new things, the experience of the child is that they’re being pushed, even if they weren’t literally pushing them. If they’re on the spectrum and they’re feeling pushed, they’ll need to dig their heels in everything, just to feel a sense of their own autonomy. If you remove the push, and you turn it into an invitation with no strings attached, they don’t feel the need to keep going at it and it creates a lot of openness.

The Son-Rise programme equips parents with the tools to help their child with autism. Are parents the best people to do this?
Some autism treatments look at the parents as kind of the problem ― like, you’re too emotional, step aside, let the professionals handle it. What we’ve seen is the opposite: No one has the kind of love and dedication and long-term commitment than what a parent has. And no one has more expertise and day-to-day knowledge of the child than the parent. We feel that parents aren’t in the way, they ARE the way. When parents are equipped with the tools, that’s when we see the biggest change in the kids.

But sometimes, parents are the ones who place limits on the child.
We’ve had situations where parents have had it beat into them that their child can’t talk. We’re working with the child and he is using words with us. The parent is observing us, but they just don’t see it. We’re like, “Did you hear what he just said?” and they’re like, “We don’t know what you’re talking about”. We’ve had to play the video back and slow it down for the parents to pick it up. They’ve been so convinced that he’s not speaking.

No one has more expertise and day-to-day knowledge of the child than the parent ― we feel that parents aren’t in the way, they ARE the way.

The programme teaches that you need to celebrate your child’s every little attempt and success. That’s not easy for lots of people…
Getting excited just because your child waves ― it’s hard to do. It’s not what feels natural. We try to get parents to notice all the things that the kid is already doing, that we haven’t noticed because we’re so busy looking at the things he is missing.

Did he just make a sound towards me? Did he just reach out and touch my hand? See these as ways your child is reaching towards you. I tell parents, if you’re working with your child and he sprouts a pair of wings and starts flying around the room, you’re not going to go “Good job flying, buddy”. You’re going to go, “Holy freaking cow, I can’t believe this!”

We’re trying to show people that when your child looks at you, or takes your hand, he is flying and to see it for what it is.

You’ve brought this programme to more than a hundred countries. Can it be applied across cultures?
When I went to Britain, people would tell me, this is not our way, having so much enthusiasm, this is not the British way. It’s fascinating because what we’ve seen is that it’s not an American programme, it’s a human programme. In fact, when we work with American families, they have just as much trouble as everybody else, doing the same exact stuff that every culture does.

What about older children, or even adults with autism? Does the programme still apply? There was a 33-year-old from Britain, who had spent his whole life in a home, and essentially made no progress. His mum learnt about the programme, and was so excited she pulled him out of the home and started working with him. At that point in time he was speaking in single words, had almost no eye contact, and spent 80 per cent of his time on his repetitive behaviours. Eighteen months later, he is speaking in 6-to-10 word sentences and has neuro-typical eye contact.

In the same way that a 75-year-old can have a stroke and relearn how to speak, we see that the brain is capable of this. We never ever say that it’s too late. We just want to give everyone a chance.

If you could summarise briefly the essence of the programme, how would you do that?
We’re social ambassadors of our world. Anything you do tells your child that this is what it’s like to be part of our world, and I’m claiming that I want you to be part of our world. So, if I’m pushing you a lot, you’re getting frustrated, and we’re forcing you to do things you don’t really want to do, I’m telling you to come be part of our world where you’ll be forced to do stuff you don’t want to do and be judged and criticised. And the child’s like, no thanks.

We want to show that we want you to be part of our world where you can still do the stuff you love, you’re celebrated, and yeah, you’re challenged sometimes, but always in a way that’s fun, exciting and motivating to you.

If we’re asking them to climb to the top of a huge mountain, you have to make that mountain look freaking amazing.

Read one Singaporean mum’s personal experience with the Son-Rise Program, and find out more from Embrace Autism about the Son-Rise Program.

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