Autism 911: $20,000 worth of therapy "fixes" the problem
Today, the Bilsons' family life is a lot calmer and quieter. That's because Marissa and her parents, John and Mary, are following the rules that were made during a five-day intervention. The intervention was provided to them free by the group Autism Partnership, or AP. Usually this type of treatment costs about $20,000 a week, and it's not covered by insurance, but because CNN was allowed to videotape the entire process, AP waived the fee for the Bilsons.I've gotta say, I find it rather amazing that in all these years not one therapist, doctor or teacher recommended behavioral therapy to the Bilsons. In fact - at-school and in-home behavioral support might well have been available to them free of charge through the schools or through state services, had they investigated their options. That's because Applied Behavior Analysis is THE most fully researched, most commonly available autism therapy out there.The intensive, one-on-one, in-home therapy was meted out by behavioral therapist Rick Schroeder, who used a technique of behavior modification known as "applied behavior analysis" or ABA. ABA essentially breaks down behavior patterns in order to reward good behavior and not reward bad behavior. Essentially, it's all about laying down the rules and sticking to them in a way that Marissa can understand.
Marissa -- who before the therapy was, in Schroeder's words, "out of control" -- now has rules to follow, something she didn't have before.
Marissa's mother also learned some lessons about her daughter that week. "I learned that Marissa is smart," Mary Bilson said. "Smarter than I thought."
These days inside the Bilsons' cozy house, there is a lot less screaming and more boundaries are in place. The balance of power is tipping back into the hands of the parents and away from Marissa and her tantrums.
Of course, I'm delighted for the Bilsons, who have gotten their lives back. But I'd love to know just how and why their situation deteriorated as it did. After all, they seem to be good parents - not the sort of folks who would typically allow an out-of-control child to rule the roost. And they're not a family who lacks education, awareness, or connections (they were chosen for a CNN TV program, which seems to be to suggest they had a pretty good idea of where to turn for resources).
I guess it's another case of a clear minded professional using the tools of structure, rules and order to provide a child with what she needs to control her own emotions. Hard to believe this could possibly run $20,000 when it sounds like simple common sense.
Comments
I’ve had many behavioral therapists try and fail. My 14-year-old son is in one of the best schools for autism. They are still trying to gain control of his aggression. I would say that 5 days is pretty miraculous and certainly not the norm.
I think it’s a typo (a great BIG typo) on CNN’s end. I’m sure that typo with have an impact on ABA. Their earlier article this week did state $2500. However, within that first article it said not to judge at what the child was allowed to do, meaning the rules were different for that child,
“She is allowed unlimited time on the one family computer. She is allowed access to her siblings’ rooms and possessions. She is allowed to eat dinner at the computer instead of the family table.”
I can understand different rules. I do have a child with autism and do know how hard it can be. But you pick your battles, and battle the important ones. Parent’s with children with autism, the only time you’re not ‘working’ is when the child is asleep, which is why I love bedtime. The key words used was “allowed”. When my son was younger and harder to feed (and non verbal with social issues) I didn’t care where he ate, as long as he did eat however, all kids require rules, even those with autism and for parents who cant find it in themselves to enforce rules to their children with autism, I suppose it’ll cost a pretty penny to hire a spendy therapist to help and let them know all kids need to follow rules. Allowing a child to go into their siblings rooms and take their things is just a poor parental choice for that child and her siblings. That would had been a battle they should had tackled. I myself would had enforced that rule with locks. I certainly would pay that amount of money for something I needed to put some effort into. The concept of ABA, any parent can do themselves.
Of course this therapy had such great results, once rules were laid out, the child understood them and wouldn’t get her way or letting behaviors run the family. A child doesn’t have to be verbal or all that social to understand rules. A child would be out of control with out structure and rules, but this article doesn’t point that out; it simple tries to make the reader believe this therapy is some type of miracle. A draw back, as stated by the mother, is that the rewards often wear off and new rewards have to be created. I myself disagree with this. My child’s reward is not taking away video games. I have always some what disagreed with the reward thing and wanted to teach my child life doesn’t offer rewards for things he should be doing to begin with. Another issue with that reward system is when places like day care or school changes the reward system. A reward system can encourage a child with autism continue to be rigid.
In the end, this family had good results but the key will be them on-going sticking to it, which goes for any parent who has a child with autism and what goes on after school and on weekends when there is no therapist present. Lucky for them, this was free to them but for the rest of the parents out there these days, who has that kind of money?
I concur that $20,000 a week is probably an error–that roughly translates into a million dollars a year. These programs are expensive, but NOT THAT expensive. The $2500 cited sounds more grounded in fee schedules that I have seen around. Still a lot, but in the realm of reality.
If “common sense” was enough, no one would need specialized therapy, or the assistance of consultants or specialists. If only it was that simple.
For a child with autism, it doesn’t take alot or alot of money to keep a child out of their siblings room, off the computer or where they eat. All it takes is a lock on a door, and password. The bottom line is, the parents still have to enforce and follow what the spendy therapist has suggested and if they don’t, the child will just go back to what they were doing. I guess it does take the need of a spendy therapist, not covered under insurance for some.
In the end, those parents still need to have a schedule and plan of computer use, where the child eats and how to keep the child out of bed rooms and consequences and they have to follow that plan.
I’m sorry, for me it was common sense and didn’t cost me a dime. You do have to change and alter things for a child with autism but autism is not the excuse for not enforcing rules or allowing a child computer time unlimited. Instead of facing the battle, they choose to pacify. JMO is that ABA expliots parents into thinking they have no common sense, and they put a price tag onto it and in this article, it surely expliots this.
jeez – hope you’re right about the typo! I just figured it was the particular company. At one point, they cited $2500/day – which translates to $10,500 per week… not exactly a bargain, but a little less, I suppose!
Re common sense – of course, you’re right that ABA is much more than common sense. But honestly – every child needs to know that there are rules, order, and control in their environment. It’s just a basic part of good parenting. And for a child with autism, it seems to me, that goes double!
Lisa (autism guide)
Hi–
A locked door with a pass word is brilliant and am seriously considering to just that.
Just posted but would also like to add the site that my daughter and I use a lot. I have posted this before but here you go http://kpentersee.com/whatcausesautism.
Lisa,
Of course every child needs to learn rules of functioning in society, but if it was always easy or obvious, then having a child with autism might be no different than parenting any other child. Sometimes even parents of typical kids find that their parenting strategies are ineffective or counterproductive and seek professional assistance.
Sometimes folks need help to learn skills so that they can do what common sense would normally dictate. I wouldn’t criticize the Bilsons for recognizing that their current way was not working and that it was time to learn what to do to change their family’s strategies and given the brevity of the newsstory, it’s almost certain that we were given a slice and not the whole story.
It’s second-hand, but a friend in the profession contacted AP about that cost, and the figure is inaccurate as the “usual” cost of therapy. FWIW, I had one of these intensive 1:1 programs for my daughter for several years, and even if I had taken a “cadillac” approach, we wouldn’t even have come within spitting distance of $20,000/week. In our case it was more like $20,000/year. Still a chunk, but relatively manageable and effective in teaching her fundamental learn-to-learn skills and social behavior.
The program that AP conducted is called Res-Q, and it’s intended to be a very short-term intervention for families that are in crisis, rather than an on-going intervention though they provide that as well.
@ Sandy:
You are very fortunate that ABA is “just common sense” for you. The psych literature (i.e., the published professional journals) are filled with research on behavior analysis from various psychologists going back to Watson and Skinner. In my opinion, it is much more complicated–hence the analysis part of applied behavior analysis. Oftentimes, one behavior will have multiple competing functions. With certain individuals, “laying down the law” just doesn’t work.
I noticed that Autism Partnership wrote a really thorough and informative response yesterday. It’s worth checking out. I certainly felt much more positive toward their agency and the incredible work they do.
I know many parents who have never used ABA and had a little imagination and good sense to figure out things behavior-wise. What this article did was take a family which set NO boundries for their child with autism, considering what the first article offered, gave them a week of free therapy and claimed all the credit and added a cost unreachable of most parents.
Yes, it is common sense to stop a child from entering their siblings room and taking their things and quite easy to do, it is common sense to put a limit on unlimited computer use and that is just as easily to do and if that requires ABA and 2500 a day, we’re all in big trouble. I didn’t need ABA to inform me how to keep my child out of the bath room, off the computers or staying out of rooms he didn’t need to be in. I figured that out when he was 2 and adjusted it as he got older. It’s not a matter of laying down the law, it’s a matter of a parent setting boundries, which all kids need and more so those with autism or you do end up with an out of control child with no sense of direction or routine.
I appreciate the emotions that this issue brings to the table. However, I’m amazed anyone with Autism knowledge can argue the validity and strength of ABA therapy.
What appears to be missed here is that AP offers a library of services – not just the RESQ program CNN profiled. If anyone, including the author of this article, took the time to visit the site, or perhaps ring them, many questions and mis-information would have been answered.
As someone who works with a relative of the family profiled, I can speak first hand of the gratitude this family has. They gladly praise this program to anyone ethical enough to take the time to listen. But to judge them? Question them as parents? I’m shocked. Saddened. If we could all be under a microscope in front of 30+ million, I think many negative voices here would be silenced.
I would hope, given the nature of why we are all here, we could focus on facts and proven therapy benefits rather than inappropriate judgments and mis-information. Such ethical behavior makes us better people – and will offer greater rewards and resources for our children.
Katherine – you say “They gladly praise this program to anyone ethical enough to take the time to listen. But to judge them? Question them as parents? I’m shocked.”
I’m sure that the family gained a great deal through the program. No doubt about that.
But honestly, if you choose to go on CNN as a “family in crisis,” I think you’ve chosen to be under a microscope. And of course people will express opinions – about the family, the situation, the therapy and the cost.
CNN was basically presenting reality TV – the “autism” version of Nanny 911. Like Nanny 911, it offered some great ideas and solutions to very challenging parenting situations.
But there’s no ethical issue when people have comments to make about participants on Nanny 911 – nor should there be an ethical concern regarding a discussion of this show. My goodness, that’s why the show is on the air in first place!
The fact that Marissa is autistic makes the Bilson’s situation more challenging. But there was a very similar program on The Nanny about a year ago, featuring Lynne Koegel and her particular brand of ABA. Koegel, too, did a great job – and there was plenty of discussion then.
Lisa (autism guide)
Plenty can disagree with ABA. I disagree with it. No one says any one has to agree with it at all. This of course does not at all mean I do not have Autism Knowledge. It does not help all children and of course it all depends on the actual therapist. I have met many parents who had bad experiences with ABA therapists as well and ABA did nothing for them.
Most families may never know what triggers a meltdown, even if the child is verbal. Many may never know how to help a child through a picture perfect transition. When you have a child with autism, those things are going to happen. CNN and AP could had spent more time on different behaviors than what they decided to print. Solutions doesn’t have to cost so much nor should other families out there with a child with autism be led to believe this would be their only hope. This article also brought up valid sibling issues. Also what this story suggests is for a little more than a regular ABA therapist that is on-going 40 hours a week, you’d be saving money paying $2500 for only 5 days and get the same result. I’m surprised no one puts two and two together and figures that out. “…no longer goes into sister Brittany’s room, she no longer monopolizes the family computer, and her once-frequent screaming fits have all but stopped. Possibly best of all, Marissa can now go out in public without creating a scene –” Sounds like it’d be worth every penny, if that’s exactly what it’d do for al children with autism but we all should know most times it takes much longer than a week.
I did not see this program and so can’t comment on it, but I can say, as the mother of a 3 year old son with autism, common sense goes far but sometimes not far enough. I have plenty of common sense, but after a 2 hour screaming tantrum when he doesn’t get what he wants, I do question my parenting skills. I agree that you do have to pick your battles (and battles they are), but there is nothing I see wrong, and a lot to be gained, in asking for help. And as any parent, let alone one with autism knows, every child is diffent and handles things differently. A professional can evalute that particular child, and the parents, and steer everyone in the right direction.
I don’t want to beat the issue, but I had a chance this evening to read the post that others have mentioned from the Autism Partnership blog, and thought it might be useful to the discussion to read it first-hand and get their point of view on the show, the (actual) cost, and the RES-Q program.
$20,000–Are You Crazy??
Feb. 4, 2008
The average American household is unable to contemplate a second mortgage and doesn’t have a chance with what little has been saved in 401K to address the fees of an in-home ABA full-week support program.
Speaking for a single mother, the odds of course are stacked a bit higher. Remove the obstacles of payment and provide parents real-time instruction on how to change morning tantrums into morning success, night-time terrors and tears into night-time calm would not only change the future for so many children, but think of the parents. So many days I drive to work with tears streaming down my cheeks trying to figure out just another way I could wake up and do things differently tomorrow that might have a different outcome that could help my daughter with the simple task of “wanting” to brush her hair and “wanting” to brush her teeth before school. The root of the cause we all face is lack of supportive and inclusive insurance policies, which would of course, reduce this high-cost intervention and change the landscape of fairness for all. -DawnS
I worked as a behavioral therapist for Pacific Child and Family Associates in Los Angeles and was paid $13.00 an hour. Disgusting. God knows how much profit that company was stealing from people. Please email to discuss.