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Some people think the rate of autism should be considered an epidemic. Others think that is too strong of a reaction, but one thing is for sure, autism is way up. We talked to Nancy Fellmeth from FEAT.org, an autism advocacy group that has been focused on autism since 1993.
Nancy
I want you to imagine a kid who doesn’t speak English. That’s what a kid with autism is like, okay?
It’s like our world, our language, does not compute in their brain. So we’re asking them to do something, and they don’t understand it. So they get frustrated, and they start throwing tantrums, they hit things, and then that becomes frustrating for the parent who starts screaming. What we want to do is, we want to teach the parents, intervene in little Johnny’s behavior before it becomes a problem. We don’t want little Johnny to get frustrated. So they see that Johnny is getting frustrated, okay, let’s go and help Johnny by prompting him through it, teaching them how to do it and reinforce him for trying. Now the next time Johnny gets to that, let’s get him to that first step and reinforce him and try to move him along, you know, to the next step. Pretty soon he could do all the steps. We don’t have a tantrum anymore.
Gene
That’s Nancy Fellman, a trailblazer in learning how to communicate with an autistic child. She’s the parent of a 29 year old son with autism that led her to advocacy and volunteer work for an organization called FEAT; Families for Early Autism Treatment. They believe that you must trust your parent instinct, you must take action, and you must do this with urgency. This is An Introduction to Autism, a compassionate evidence based series that provides solid information, guidance and hope. I’m your host, Gene.
And this podcast series is produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways.
So Nancy, what happened that created a need for FEAT. And when did it get started?
Nancy
Well, it started in 1993, when autism just really exploded. Like before 1993 I think it was about 1 in 100,000 people had autism, right. And it got down to something like 1 in 50,000 or 10,000, I’m not, I’m sure terrible with statistics, but it really was significant. And there were a lot of people up here in Sacramento whose kids were being diagnosed with autism, and there was nothing for them. So a couple of parents, a mom, who was a stewardess, got together with the doctor who diagnosed her child, Dr. Linda Copeland, and they got together with a guy who was a psychologist who knew this, this Dr. Ivar Lovaas down at UCLA had this revolutionary ABA therapy that he was doing.
And they said, let’s bring him here to Sacramento, and so these people who knew nothing about grant writing, went out and wrote a grant. And Sierra Health Foundation funded FEAT to train some therapists that they recruited here from Sac State, who wanted to be psychologists. And they trained them, sent them back here, and then they in turn, trained us as parents, and that’s when I got involved. My son was diagnosed when he was three, so in 1994.
Gene
So you mentioned in 1993, there was this explosion in diagnosis of autism. Is there an increase in autism? Or is there an increase in people with autism being diagnosed?
Nancy
That was a good question that everyone had. So they did a lot of epidemiological studies, and they found that it was an increase in autism. Autism is a subjective diagnosis, right? There’s no blood test for it.
Now, there are some genetic markers, like, you know, the 15th chromosome, but it’s not true for everyone so, it’s all subjective. But when around the world, you’re seeing the same increase, you know, so it’s in Korea, it’s in China, it’s in America, it’s in France, it’s all over.
Gene
So no one has any idea what’s happening that would cause this global increase?
Nancy
There are theories. I mean, they’re studying it, but they have been looking at all kinds of things. So looking at genetic causes, environmental causes, there was a study called the Charge Study, which basically looked at environmental causes, and found that there was a real connection between neurotoxins and autism, exposure to neurotoxins and autism. So there are pockets where Autism is higher, for instance, like the Central Valley of California, because we have a lot of agriculture, we have a lot of chemicals in the air. So I think that people do think that that is a cause. I know in science, there’s a difference between a correlation and a cause. And I’m not a scientist, but there is a higher incidence of it in places where there were a lot of these environmental toxins.
Gene
How about the challenges? Research is expensive, and businesses tend to fund research. And so they can arguably have an influence on the outcome of research if they’re the ones paying for it, correct?
Nancy
Oh, that’s so true. Yeah. Well, there isn’t a tremendous amount of work being done by anybody on any of these things that I’m aware of, but tell you the truth, I kind of just let them do their thing. You know, they’re looking at and they’re doing studies to look at twins to see what is the genetic difference between the one who has autism and the one who doesn’t, because we know those kids. But we have other sets of twins, where they both have autism. Sometimes you’ll have genetically identical twins, but different types of autism. There are so many unknowns. Within one family, I have a family with four kids, I’m working with and they’re all different, they all have autism. Every one of them has different side issues and behavioral issues but the one thing I know for sure, is that the one thing that I know works is Applied Behavior Analysis. And I’ve seen it work.
Gene
And so obviously, you believe very strongly, and you’ve seen evidence that the more involved a parent is with the child, the better the expected outcome is for the child. Is that right?
Nancy
Yeah, that’s my experience. And also, when the study was originally done down in UCLA, they had the parents involved. As a lay person, you might hear that, well, these kids are in therapy 40 hours a week, a three year old, 40 hours a week, and they go, Oh, my goodness. I mean, that’s like a workweek. It is a workweek, right? That’s how they picked it, I think. But what they don’t realize is that these kids with autism, auto, you know, meaning self, alright, so they are inside themselves. And it’s not like, you’re going to bring them out of plug in, you know, like some kind of a television show would bring them out of the shell. But what you’re doing is you’re reconnecting things and my vision of it is, they believe that either their brains have too many or too few clippings of synapses. And so what ABA, Applied Behavior Analysis does is it takes learning, and it makes it very, very small, and manageable, and little by little builds up like a scaffold. So you’re building like you’re going to the top, as you add skills across this way, right, you’re getting higher and higher level skills.
And these kids need to be involved every minute of their day, because they only learn when material is presented to them in this very specific way of teaching. Which is very much based on the child being attentive to the cue, and then that cue which they call a stimulus, you know, having some sort of a reaction, which we call a response. And then your response to that is the consequence. And those three things, you know, they shape. So what you ask the kid to do, the reaction and what you react to, that’s how you shape the behavior. And it’s far more complicated than that and I’m not a behaviorist, but what I’ve learned is that if you appropriately use behavioral strategies, you reinforce the behavior you want to see repeated, and you don’t reinforce the behavior you don’t want to see repeated, right? It works. It’s how they train, you know, dolphins, and it sounds horrible. As you said, it’s not like training a dog but you know what, the way it works. It’s slow, it is tedious, but it needs to be done 40 hours a week when they’re little because in general they don’t learn like a typical kid. So like a typical kid takes in what they see, they pick up on things like, oh, Johnny touched the stove, he screamed, his hand was red and I don’t want to do that.
Our kids aren’t like that. They don’t notice Johnny touching, because they’re so busy staring at dust or, you know, repeating senseless things they heard on television, in some way not connecting. So our goal through ABA is to get the parents to use these strategies all the time, so that every single moment that this kid’s awake, that they are learning, and filling up those, getting those little, I imagine as little synapses starting to come together and connect. And then pretty soon what you see is the kid that couldn’t even sit in a seat, you know, a week ago, because you’re reinforcing him with something he likes. When he does something, you want him to do something simple that you know, he can do, he wants to please you now, so now he comes to his seat. You don’t have to fight with him to get him, not physically, but I mean, you have to kind of negotiate with him to get in there in the sense of, okay, you know, we’ll play with the car after we sit and look, you know. You don’t have to do that anymore because being there becomes reinforcing for the kids, because they’re successful. You know, those tutors, and they trained the parent so the parent can be, they know how to talk to these kids in their language, which is like three words at a time, maybe one word at a time. I want you to imagine a kid who doesn’t speak English. That’s what a kid with autism is like, okay? It’s like our world, our language, does not compute in their brain. So we’re asking them to do something, and they don’t understand it. So they get frustrated, and they start throwing tantrums, they hit things. And then that becomes frustrating for the parent who starts screaming. What we want to do is we want to teach the parents, intervene in little Johnny’s behavior before it becomes a problem. So we don’t want little Johnny to get frustrated. They teach them how to intervene, so they see that Johnny is getting frustrated, “okay, let’s go and help Johnny by prompting him through it, teaching him how to do it and reinforce him for trying. Now, the next time Johnny gets to that, let’s get him to that first step and reinforce him and try to move him along, you know, to the next step”. Pretty soon, he could do all the steps, we don’t have a tantrum anymore. And the parents need to do it over and over and over again, because it may take a thousand times. I guess it took six months for my son to be able to do three things at one time. Like while sitting on a chair, to stand up, go open the door and turn on the light switch. Six months to be able to do that. Now, I mean, yeah, he can do it, that kind of stuff.
Gene
So you said Chris is 29 years old now?
Nancy
Yeah.
Gene
Is he capable of living by himself and taking care of himself now?
Nancy
No, no way. No, you know, when he was little, we were doing our program ourselves, paying for it ourselves, with just a little bit of consultation from the regional center. So I could only have about 20 hours a week. I spent half my time fighting with my school district just to get funding. And I was at a school district that wasn’t cooperative at the time. So he never got a 40 hour a week, full time program. We did the best we could with what we had in those early days. But what he did get was a lot of inclusion with typical peers. So he went to school with neurotypical peers up until he was 15. When we moved to a school with kids who had learning disabilities and higher levels of you know, autism, they could function, some of those kids even could drive. But he’s not capable, he doesn’t have the common sense. He’s 29 years old, you know, chronologically, but he’s more like a 13 year old when it comes to his interest and his abilities.
Gene
And if he were born today, do you think he would have a different outcome by the time he’s 29?
Nancy
Absolutely. Oh, yeah, if he’d had a 40 hour week program, he would have had twice the learning opportunities. We have fought successfully, FEAT has and other groups to get the school districts to provide programs that are appropriate. That are ABA based programs for their kids, because we want people to get the treatment. And we realize that not everyone is capable, at least I realize that there are parents who are not able to do an in-home program, either they work or it simply isn’t their temperament, you must be very strong to do the program. Because if you’re going to use the internet as your reinforcer, then you can’t give the child access to the internet any other time, except when you’re working, right, in your ABA program. So it’s a real commitment. So for those people, we need these really strong programs in the school districts. But we also need to have programs available for parents who want to do this in the home. And that’s where FEAT has been very active. If Chris had that level of intensity, I think he would have done better.
Gene
So what would be your word of caution or encouragement to a parent who’s just discovering that they have a child with autism?
Nancy
Act quickly, time is of the essence. So the younger the child, the more plastic their brain, and the more quickly they learn. And the more quickly they learn, the more quickly we can get them included with neurotypical children, and they can have a typical experience growing up. It does make a difference because the sooner we can get them around neurotypical kids, then their role models are better behaved children. We don’t want them in a classroom full of children who are also staring at dust and you know, looking at their fingers and reciting scripts from movies. We want them around kids who they can emulate. Like when the first time I took them to occupational therapy, all they did was run back and forth between the walls and bang his head. They had to put people on either and to keep him from hurting himself. Every Door had a latch on it up that he couldn’t reach. He was dangerous for himself, to others. Watching that kid transform from that into a kid that you know, a couple years later, you know, we were taking back home to Hawaii with us on vacations, was because of ABA. But I believe a lot of it was because I had to do it myself or grandma. It doesn’t have to be a mom or dad. It could be auntie, uncle. It just has to be an 18 year older person who’s in that child life.
And then that person takes those experiences and uses them all day long. Because you know, you’re not only autistic that eight hours that you’ve got a tutor there, and eventually the tutors will fade. I mean, the goal of these programs is to get themselves out of your life, right?
Gene
And in your mind that best treatment is intense ABA?
Nancy
I was on a committee, it was a California State Committee for best practices for autism treatment. They looked at all the different treatment methodologies based on all the studies at the time, the only one that had been replicated across the world across thousands of studies, and was being used all the time to success was Applied Behavior Analysis. So I would tell parents don’t go down other paths.
Gene
Well, you’ve given us great advice today. Thank you for taking the time to tell us about FEAT, and sharing your personal journey, and helping others as they start there. So Nancy, thank you for joining us very much.
Nancy
Alright, Bye Bye.
Gene
That’s Nancy Fellman, a volunteer with Families for Early Autism Treatment. You can ask her questions and get more valuable information on their website www.feat.org. This is An Introduction to Autism, a podcast series for parents who are wondering if their child has autism. If you want to stay in touch with best practices to give your child their fullest life, please subscribe to this podcast right now. You’ll also find great resources in the show notes and at www.tpathways.org. Thank you for listening.