Thursday, June 2, 2011

The Son-Rise Program

This is yet another of the speakers from Autism One who truly inspired me. And again... so much of what he had to say applies to all children, not just those who are on the autism spectrum. Who can't use a little more love and empathy?

Raun Kaufman is an amazing story, and one I hadn't heard before. He was diagnosed as severely autistic at the age of 2, with no verbalization and so many of the classic symptoms. His parents were - as so many were and still are - told to institutionalize him because it was hopeless, they refused. Instead, they kept him at home and began a program that was based on the idea that Raun engaged in his behaviors for a reason that made sense to him. They focused solely on the social aspects of his life, not trying to force neurotypical behaviors on him (as I do with Mister Man all the time!) but instead on creating empathy by engaging in those behaviors with him and building a relationship that way.

The result today is an incredibly charismatic man. In fact, he told his entire life story before admitting that it was about him, and I would never have guessed otherwise. Let's just say that I can see why NBC made a movie about Raun Kaufman back in the 1980s.

He started off with a truth that most parents of special needs children don't really thinkg about. "It’s not the diagnosis that’s so devastating. It’s the prognosis. He’s never going to X is what we’ve been told about our children," he explains. And maybe that's why Mister Man getting an official diagnosis last year wasn't so devastating to me. I'd already come to terms with so much, the diagnosis was just an official label; it changed nothing about him. I'm lucky that way, but I also had five years of knowing there was "something" before the diagnosis came.

His parents - with no medical or therapeutic background - developed the Son-Rise Program where they worked with their child for three or so years in an effort to really reach their son rather than try to modify his behaviors or try to get him to stop doing something. There were things they did that was different. They began with the possibility that their child had limitless growth, and how brilliant but yet so simple is that? I think about how often the wee ones surprise me by the things they can do if I just let them try.

Raun's parents joined him in his world instead of making him join in theirs. They worked on their own attitudes and emotions to best be there for him and focused on their emotional growth to connect and relate with people. Did I mention that Raun graduated from Brown with a degree in biomedical ethics? None of this was supposed to be in the cards for him, and it simply shows what our children are capable of. Raun's caveat was, "This doesn’t mean that any child who does any program is going to turn out with such great results, but when you don’t let people decide in advance what they’re capable of, then they can go as far as they can go."

He also made an excellent point on our priorities. "We’re so busy trying to catch our kids up and fix problems that we don’t focus on the child that we already have right now and really delight and enjoy in the quirkiness of our kids right now." That attitude is what enabled his mom to create the connection that made everything else possible.

His parents later founded the Autism Treatment Center of America in Sheffield Massachusetts based on their experience and this theory. Parents come from all over the world and take a program there and focus on learning what they need to know about the Son-Rise Program – without their children - then go home and can put it into practice. It’s a non-profit, which enables them to provide financial aid to parents. In fact, they gave out almost $1 million in scholarships last year.

The principles and techniques covered in the program include facilitating interation, eye contact, reactions v non-reactions, the "isms" and how to join, your child’s sensory environment, inspiring growth, training others, videos with real examples, Q&A sessions, using the social development model, creatively challenging your child, handling “real world” situations, and more. Somehow, it's all covered in the five days of learning there.

Everything is based on the idea that “The children show us the way in, and then we show them the way out. This sounds simple and maybe obvious, but the second half is where we focus – the first half is the challenge to actually do. Autism isn’t a behavioral disorder, it’s a social relational disorder," according to Raun. And that premise alone offers so much hope, doesn't it? I know I absolutely focus on the second half and not so much the first. Since I got home from Autism One, I've been trying to look more at the first part and focus then.

The focus on traditional programs is on changing the behavior, and that's what all Mister Man's therapies have been - and that's what I do on a daily basis, too. The focus of the Son-Rise Program is how to create the relationship; the behaviors then are just symptos. If we as parents address the relationship, we can change everything else much more easily.

The first strategy is about joining, which is participating in your child’s repetitive and exclusive behaviors. It's probably the most controversial of the strategies and completely counterintuitive to most people - including me. The people in the Son-Rise Program don’t try to stop the stimming behaviors but instead join in and participate in the behaviors with their children. Explains Raun, "If your child is flapping their hands, we do, too. Instead of saying 'enough about the trains' we become train freaks when they want to talk about trains. We have people who have trouble making relationships, but what we do most of the time is stamping out what they want to do. It's not creating a relationship but instead just making them do what we want them to do."

People are concerned that if you stim with them, you will reinforce the behavior - which is the logical way that I'd look at it. Raun provides a different perspective on it that makes perfect sense if you really thinkg about it. When Raun's parents joined in with this stimming - spinning plates and rocking, that’s the first time Raun even looked at them, smiled at them, and eventually created a relationship with them. "We’ve been doing this for 30 years and have never seen it reinforce or become more common. Instead, as they develop a relationship, the stimming decreases," claims Raun.

Raun has an explanation for this. As parents and therapists, we are currently - consistently - sending the message of: stop doing what you want, start doing what I want. When that’s the experience with our children day in and day out, they say no thanks. It’s not fun for them. Relationships form around a common interest or through reciprocity. We don’t generally do either of these with our autistic children (and really, how often do we not do it for our neurotypical kids, too?). By doing this, we can get a child to do a behavior we want them to do, but it just stamps out a symptom and doesn’t help them to develop relationships or to be interested in relationships. Huh.

Raun states quite clearly that if your child is stimming, he has a good reason for it. Either he is completely overloaded with sights, sounds, smells, etc. or they live in a world that seems really unpredictable to them. With this background, they feel that if they do things over and over again, they can create something predictable in a sea of unpredictability. If you think about it, they are actually behaving very normally in an abnormal world. It doesn’t help to just try to stamp this out.

Instead, Raun has a completely different focus. As children get a better with the relationship with you, that is the foundation for everything else and the basis for the relationships that they will then develop – and want to develop now – in the future.

If you have a child who is high functioning and very verbal, that doesn’t mean this doesn’t apply to you. This does even more so - and here's where I was even more encouraged about Mister Man, who is very high functioning (in first grade in Catholic school with no supports). If he talks about trains all the time, you want to listen all the time to it. You want to bring a book about trains and become a student of trains. In my case, I need to stop ignoring the talk about Star Wars and instead start to learn all the characters and what they do. Ditto with dinosaurs, even though I didn't like them even when I was a kid!

That said, you only join in with the stim. Per Raun, "That’s when he’s saying he can’t cope with the world we're all living in, and he goes into his own world." When he’s crying or wrestling or interacting with you in another way, that’s not stimming and not when you join in. There are other caveats with this, as well. Joining does not magically teach the child to not be autistic or teach language or anything else. It just helps get him interested in you and start to create a relationship.

The next strategy focuses on motivation. As Raun puts it, "This is the left hand if joining is the right hand. This is when you do want to teach your child new stuff. You only want to use this strategy when your child is not stimming. This is when they are looking at you, playing with something, etc. It is designed to match your child’s area of highest motivation. What your child loves is going to be the biggest factor in their growth. They will learn many times faster than if they are not interested in the motivator."

For children on the autism spectrum, traditional teaching is rarely motivating. They simply don't care about the rewards and motivations most others relate to. Then again, think of all the neurotypical kids who also aren't motivated by school, and this could be a huge help for them too, no? Your child might learn to count to 10 faster if he learns to count 10 dinosaurs versus counting 10 circles on a paper. Raun explains, "The timing is almost always wrong. An autistic child has no green lights in traditional learning environments. A red light is when they are in their own world and not ready. A green light is when they are looking at you, interested in you, engaging with you."

Raun strongly believes that focusing on the motivation has significant advantages over the “Reward Principle.” The reward principle is the most popular technique in autism treatment (and outside, too, no?). In it, you prompt your child to do a behavior, you get the behavior, and you provide the reward. You continue to prompt and reward your children until they can do it on their own without prompting. The problem with this, Raun shares, "is that the child becomes robotic about it, seems to do it in a rote way, and does it only for the reward. The problem is they want their children to want to do it and to do it with us. The behavior doesn’t have the meaning behind it."

He gives the example of the chidl who is taught the skill that “coat on” is that you hear this command, then you notice it's a coat and you understand you need to go put your coat on. What you really want to teach is the understanding of the concept rather than just learning the skill of putting a coat physically on. You want the child instead to generalize and recognize that it's cold and a coat might be needed and so to go in search of a coat to put it on. That's the difference. Raun shares that, "The same goes with teaching them to say thank you and understanding being grateful. It's not about getting robotic behavior – and when you do it with the right motivation, it happens faster. Parents want spontaneous self-generated communication and actions such that they will generalize the skills because they are excited about it and want to use it."

So how do you do this? Join your child until your child pays attention to you. Do it on their timeline, and it may take a few seconds or ten minutes or a half hour. It will vary constantly. Once your child looks at you, you will introduce something you know your child will like. You choose the motivator that your child will like in advance, already knowing what your child is interested in (wrestling, airplanes, chasing, Disney).

If they participate in that chosen activity of wrestling or playing airplanes or chasing or whathaveyou with you, enjoy it with them. If your child does not do it with you or they disconnect after a few seconds or minutes, go back to joining and start over. If they go with you, keep going for as long as they can. This way you are working with your child instead of against your child.

If you start with what your child is motivated by, this will generalize to other things, too – you don’t have to spend your whole life focusing on things that are their motivational items because really, do we want to carry around raisins or M&Ms trying to get our children to do something no matter where we are? Get your child excited about the motivation, then introduce the educational goal. It’s the opposite of what we usually do. Again, doesn't this seem a little counterintuitive that we give what seems like a reward before we make them do the work? Yet somehow, if they're excited about something and engaging with us, it makes sense that they'd want to learn to keep the motivation going, doesn't it?

In the third strategy, the focus becomes the socialization – and throughout this program, the social goals are placed before academic goals. As Raun explains, "Everybody loves teaching our kids reading and math and academic stuff, but keep in mind that this part of your child’s brain works great for many of them already. We want to work the part of the brain that is weak, not this part. Because so many of us have so much hopelessness, we don’t want to focus on the parts that are weak. Let’s work on the social piece because they are capable of so much. Then if they are behind in math, let’s get them caught up. The first order of business is getting a social child – we don’t want to lose focus on this." And that part makes complete sense. How else will we become well-rounded if we don't focus on the weak points?

The fourth strategy focuses on the Son-Rise Program's Developmental Model. There are four fundamentals of socialization. The first is eye contact and non-verbal communication, things like interactive eye contact, expression sharing, etc. The second is communication: from vocabulary and sentence length to conversation skills, etc. Third is the interactive attention span: the duration, the frequency – how long can they stay involved in a game with another person before they check out. If they can’t stay with a person for more than a minute, they can’t learn anything that takes more than a minute – and how many things do?! The fourth is flexibility – you want your child to go from rigidity and controlling to becoming flexible and spontaneous.

I love the example Raun gives on flexibility as a developmental stage. "A tantrum is a flexibility problem. If you get your child really flexible, they won’t have problems with meltdowns or rarely will have meltdowns," he explains. And I will say that as Mister Man has improved his functioning and is better able to relate to others and regulate himself, his "meltdowns" as we call them, have decreased dramatically.

And the fifth - and final - strategy keys on attitude. In Raun's mind, "This is the most overlooked aspect of autism treatment. What about us? We’re the ones who are with our children more than anyone else, and no one loves our children the way we do. No one has the same experience day in and day out with our children. If we are stressed out, that is going to be their experience with us. The child doesn’t know that we are stressed out for a good reason, so they simply get aggressive or check out. We need to get comfortable with our children when they are stimming, etc. It’s about not judging where our children are today while believing they can go anywhere tomorrow. Your child is very attuned to what everyone’s attitudes are." Wow. This is another of those truths I heard in this presentation that absolutely isn't just for the kids with autism. This is for every kid out there, no matter what.

Raun suggests that we notice the next time we’re stressed out and getting worked up about what our children are doing. We’re sending ourselves a message that they will never recover or it’s all my fault or they’re stimming again and GAH. Instead, he reminds us that we need to focus on different messages like "where they are today isn’t where they will be tomorrow" or "this isn’t my fault." He encourages us to spend a lot of time on this one. There are even studies that back this up – Case Western in 2005 that showed that parents or facilitators having a visible affect of acceptance, enjoyment, expressiveness, and warmth lead to significantly increased attention, etc.

Raun has a great message. "You’re the one who can believe when no one else believes. You’re the one who can see when no one else sees. And no one can take that away from you." That's the message I ned to remember, as hard as it is sometimes.

"Just be careful," Raun reminds us. "You are in a unique situation with your child. False hope is the belief that hoping for your child leads to a detrimental relationship. You keep believing in your child and keep having faith in your child, and no one can take that from you. Don’t apologize for it or let anyone destroy it." That's one of those quotes I need to print out and blow up to put on my fridge to remember daily!

For anyone who is interested, the Son-Rise Program has a startup in June and another in August, as well as one in September that they're adding. You can find out more about the Son-Rise Program on their website, which also has has webcasts, interviews with parents and children, and research available.

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Angel The Alien June 2, 2011 at 7:13 PM  

Thats amazing that you actually got to see Raun! I saw the movie. When I saw it I was a little skeptical because they say Raun completely became non-autistic and I couldn't imagine, how someone could be completely "cured" of autism. But I never read more about SonRise... the theories sound awesome! I will have to read more about it!

Claudya Martinez June 2, 2011 at 8:41 PM  

The limitless growth concept is wonderful.

Pat June 5, 2011 at 10:51 PM  

Raun Kaufman has developed some fascinating therapy and ideas for and about autism! It makes so much sense--entering your child's world and then showing him "the way out." ...on his terms and in his way. I love the idea of joining in with your autistic child in stimming to help in developing your relationship with him.

Great post, Michelle!

Kim Moldofsky June 8, 2011 at 1:35 PM  

I was so captivated by that movie, I'm pretty sure I read the book back then, too. So interesting.

septembermom June 9, 2011 at 4:03 PM  

Thank you so much Michelle for this post. I have a friend who is going through a confusing and upsetting time now with her autistic son. Your post will help her. I can't wait to share it with her. Thanks again!

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