That makes sense...
Part of my point was, though, that some parent's (me) feel helpless because we can't afford ABA (twins? Forgettaboutit) and don't know how to do it ourselves. it would be useful to know if it is the therapy that's the magic cure, or if it's the 1:1 administration of the therapy and/or it's sheer volume. If the former, we're out of luck. If it's the latter, than it seems that piecing together lots of 1:1, including our own efforts, might prove as effective as ABA.
If any therapy, administered in high volume and 1:1 would be as effective, then it follows that it might not be the therapy at all, but the volume and the 1:1. If not the therapy, then maybe board games, playing, etc. will do.
We can handle that. I'd do ABA if it were simple, but if there therapists are charging big bucks for it, I can only assume it's not something that I could pick up in a few weeks of reading.
My kids are getting no 1:1 at school. They're in a class, with about 10 other kids.
How do you "ask" the school system for this type of therapy? Or, is this sort of therapy always privately contracted?
Is there any state where you don't have to fight to get your kids a high volume of 1:1 therapy? I keep hearing about NJ.
Thanks Tony's Mom - does this CAP allow you to pay for things in a discretionary manner - like, as you say, hiring college students to provide 1:1 therapy? How do you qualify for CAP? Is that a national program?
How do you hire a college student - place an ad in their publications, just as if you were hiring a cashier or a waitress? Or, is there some 'matching' program, matching students with the appropriate majors to families that could use their services?
How did you learn how to do all of this stuff? Is there a good book you could recommend?
I don't know if there are any books, but we found out about the waiver from the local mental health agency. Back then, it was county. As I understand, the state has merged some counties into local service areas (our county is now joined with about 6 others I think). Try to find out where the local developmental disabilities office is where you are (you're in Wake County, right?); they may still be part of the county mental health. Tell them you want to apply for Medicaid for the girls (based on their disability)... you may have to wait a while but the worst they can do is say you don't qualify. CAP is a different category of services and you have to get on a waiting list for this as well. But in the meantime, the Medicaid may qualify you for some case management and other services that will help you navigate the system.
PM me if you want; I may be able to get some references as we are in NC too.
Mary
Hi,
We've all heard the stories about over-reaching parents who pushed their kids really hard when they were small, and seemed to produce some sort of gifted prodigy. Maybe they taught little Joey to read when he was two. Impressive, yes - but how was it done? Did they employ some obscure, miraculous technique that, if applied broadly could teach any child to read at the age of two?
No, more than likely, the parent's got in the kid's grill and drilled them constantly, or integrated teaching reading into every aspect of the kids existence. Basically, the parent's worked really hard to teach little Joey how to read at a young age, much harder then most parents (who were satisfied with singing the ABC song and identifying letters and didn't push for much more than that). The results, a precocious reader.
But it wasn't the technique, it was the work that the paren't put in, right?
Do you think that some of the therapies for treating autistic kids might work the same way? I mean, sure, 40 hours of 1:1 ABA therapy can produce fantastic results - but is it the ABA - or is it the 40 hours of intense, 1:1 interaction?
If you got a hold of a 3 year old autistic kid, and forced the kid to interact with you, 1:1, for eight hours a day, do you think it matters if you're employing a specific therapy - or, could you acheive similarly miraculous results if you just played house and Candyland and duck-duck-goose?
It makes me wonder, because there are so many approaches to treating these kids, and, of course, every proponent claims their therapy is the most effective. Is it reasonable to conclude that they are ALL effective, but that it's not the therapy, it's the time and hard work put in by the parent/therapist/teacher?
I'm a locally competetive runner. I'm not going to win a major road race, but I pick up my share of awards at the small, local road races.
There's a constant debate about how to train as a runner. What's the most effective approach - using a heart rate monitor and running at a certain percentage of maximum heart rate? Running fast, hard intervals on the track? Sustained moderately hard tempo runs? Lots of volume at an easy pace? Short and fast or long and slow? Cross training? Weights? Plyometrics? You get the picture.
Most runner's have their pet philosophy, but what it appears to come down to, is not HOW you run but HOW MUCH you run; no matter what philosphy you hold to, the evidence suggests that to get better, you run more. It's so simple, that no one seems to get it.
Is there an anology here? For autistic kids, do we worry about the specific treatment, or do we worry about the TOTAL VOLUME of treatment? Do we worry about maximum efficacy of therapy, or can we conclude that, no matter the therapy (within reason), hard work and sheer volume is the most important factor in determining a successful outcome?
If so, can we conclude that through hard work, a parent can fulfill some, if not all, of the role fulfilled by the professional therapist charing 200 dollars an hour, just like we can conclude that it was Joey's parent's hard work and determination that contributed Joey's precocious reading, or that running 50 miles/week allows me to win age group awards at small races, not the fact that I do a long run on Sunday and track intervals on Tuesday?
Sorry for the long winded post - no time to edit right now for length or clarity. Hope you get my point, though.
Hi Fred,
I think your analogy is a good one. At least in my experience it seems to be so. We were VERY fortunate to qualify for CAP (a Medicaid waiver program) when Tony was about 4. At the time, he was going to a spec-ed preschool full time (about 9 am to 3 pm) 5 days a week, and had 30+ hours/week 1:1 in addition to that. We did not implement a specific therapy (i.e. ABA) for the 1:1, but the structure of his goals were similar. Most of the "after school" goals supplemented what was being worked on at school, with a few extras geared to home activities (bath, toothbrushing, etc).
Fast forward a few years; by the end of 1st grade, Tony had "improved" enough to be moved from a language impaired class to a cross-cat class in school. His CAP hours have been reduced somewhat over time so that now he gets a total of 24 hours a week CAP. One thing we have learned with CAP is that the goals are not supposed to be academic as the school system is supposed to address these. However, he still needs to be able to attend to homework (he is now 12 and in the 6th grade), so we have to be creative in our wording of the CAP goals.
I wholeheartedly believe Tony's improvement is directly related to him having the 1:1 for so many years. We have gone through a few workers (for want of a better word) and are getting ready to interview for yet another one. Due to the hours, our biggest success has been with college students... our current worker is majoring in education so working with Tony has been a big help for her as well. It can be a complicated system, but well worth it.
Mary
Just my 2 cents...most kids don't get 40 hours of 1 on 1 ABA. Most get about 25, sometimes less. Yet ABA still has lots and lots of data that shows it causes improvements in kids. Plenty of kids spend 25 to 40 hours in other therapies but those therapies don't have the stats that show the same degree of improvement. However, if there were a therapy that was used one on one with a child for 40 hours per week to compare ABA to, that would be great. There isn't, to my knowledge. The only reason schools balk at giving ABA is BECAUSE of its one on one nature. That is what makes it expensive. Certainly there is no equipment required for ABA...the cost is ALL in the human being who is delivering the therapy. Because of that, there is no movement to try some other kind of therapy that requires 25 to 40 hours a week because THAT therapy would be JUST as costly. Why not just stick with ABA? The only incentive to look for something that would work as well as ABA would be if it cost less. But 40 hours a week, one on one, of ANY therapy would be just as expensive as doing ABA -- maybe moreso if it required more qualified practitioners or some kind of costly equipment. What schools would LOVE is if there could be a therapy that did NOT have to be one on one that works as well as ABA, so as to cut costs dramatically. BUt there isn't. ABA is a very logical approach to teaching and it's the combination of breaking the skills down, heavily rewarding the child's success and the intensity that makes it successful. Frankly, it's not rocket science. You are totally correct that the one-on-one nature of ABA is what is key to its working. But ANY one on one therapy would be also costly, so no one has an incentive to find a substitute for ABA.Fred,
I happen to believe that it is the time invested and the content of what you are teaching your child. Every child is different and has different needs and I think that if you can't afford ABA and if you know what your child needs and apply 40 hours of intense 1:1 or any amount that is possible, of what your child needs at home then I believe it can be just as successful. OF course a lot of people here might mention that there is no statistic to prove that and that's ok.......the point I make is that ANY FORM OF HELPING YOUR CHILD especially if it is 1:1 in MY opinion is better than NOTHING. I happen to believe strongly that ABA is a great thing but so few are able to attain it because of cost or even the school system not adopting it. There are lots and LOTS of children out there that haven't received ABA but had parents that worked with a variety of things with their child like floortime, descrete trials (or something close), doing what the other therapists give you as "homework" etc., and their children have had great improvements and results. Of course this is not documented but it is seen ALL OVER THIS website and in your and my community when you come in contact with other parents of children with Autism.
Karrie
Is it the therapy or the hours is what I understand your question to be. I don't think they are mutually exclusive benefits. I think there are probably benefits with different approaches, some may be better than others of course. Logging in increased quality hours of that approach probably provides increased benefits as well. So I think a combination of ABA AND hours of it provides the greatest benefits. But I agree with the previous poster that said there is such as thing as too many hours of any approach, however. I can see that when my son gets too much OT in any given day; he is overwhelmed and needs quiet time. I'm not speaking with much authority here as my son is not in an ABA program with a certified therapist (we're on the wait list). But I have read about ABA from the books recommended in this forum and employ it for hours a day at time as best as I can. It requires ALOT of engagement and interaction and even more patience and persistence to do it for hours a day. After some time, I definitely noticed an increased attention span with my son, increased verbal skills, improved eye contact, and improved social reciprocity. Even my husband, who is in denial about my son's possible ASD, has admitted he has seen improvement in these areas. I have to attribute it to the sheer time I spend engaging, interacting, and teaching him various skills....and I do most of it through animation, fun, and play. He is not in any preschool or daycare, and he did not have any playdates or playgroups up until two weeks ago. He was always in various gym and mommie and me montessori classes but I never saw an improvement while he was in these classes. It was only when I began to interact with him daily and for hours a day.JMHO here. Timing IS everything. If it were only the shear number of hours put in then, it would be so much easier. I don't believe that though. The developing brain is ready for only so much SPECIFIC input at a given time. The answer may not lie only in the total number of hours of ABA, but rather a combination of approach, timing and rapport. The developing brain and body are ready only at certain times for certain types of PT/OT. Speech therapy is a cummulative process, and results develop over the long haul. Just as in the NT child, ASD children are ready for certain therapy, play, skills, friends, etc. when their development reaches that point.
Get as much therapy through the schools that you can. Lots of various therapies work. However, I don't think ABA is JUST about the number of hours. It's the CONCEPT of ABA that is helpful in learning how to approach ASD kids. Their brains don't naturally organize well and ABA breaks down each task into its component parts, teaching the task thoroughly and logically. There are several different ways ABA teaches things and it's worth learning the techniques because they WORK with how the autistic brain thinks.
Let me give you a good, visual example. Making the bed. If you tell an autistic child, "Make your bed, " she'll stand there and stare at you. HOwever, you can use an ABA technique called "backward chaining" to help the child break down the task and feel successful. Step one is to get the child to put the pillow on the bed you've made, completing the task. Once the child puts the pillow on, you heavily praise the child and say something like "Good bedmaking!!!!" and give her a hug. Do this for a week or until you think she's really into the task and has "got" it. Then, put the comforter on but don't smooth it out. Show her how to smooth it out and THEN put the pillow on. Once she's done these TWO steps, praise the heck out of her. Next week, have HER put the comforter on. ONce she masters that, have her pull up the sheet, put the comforter on, smooth it out and pop the pillow on. Continue this "backward chaining" until she has every single step of the task mastered.
I think you can see that ABA is logical, depends on positive reinforcement and circumvents the fact that ASD kids have executive functioning deficits (google the term for more info). Discrete trials do the same thing in terms of breaking down ACADEMIC tasks. They may not use the backward chaining technique, but he skills ARE broken down logically and taught in small increments with LOTS of praise. I believe it IS the technique as well as the number of hours. What's more, the parents MUST be taught ABA techniques, too, because you need to use this way of thinking for handling your children and teaching them at-home skills. There really is no way to simply hire therapists, even if you could afford it. Education is key and, ideally ABA will be a part of that education. But parent involvement and understanding of educational technique is really critical. With ASD kids, it's not like we can send them to school and simply let the teachers teach them. We have to become their teachers, too. I think you'll get a better idea of how ABA works from Behavioral Intervention for Young CHildren with Autism ABA is not rocket science. It's costly because it's tedious work that people have to be trained to do. Not every single person in the world has the patience to do discrete trials, so there is often a lot of turnover among the practitioners and agencies have to offer pretty high rates to keep them. Getting parent training can help you do the parent part, but really you need to have pros do the teacher part. No one can live and breathe Autism 24/7, no matter WHAT technique is used. The fact is, there has been a huge difference for autistic kids who get ABA. It's the ONLY technique that is offered with this degree of intensity, so it really doesn't matter why it works. It's the only technique that has PROOF that it works. If you google your state's AUtism Best Practices, I think you'll see it recommended for young children. The school is supposed to be providing it, even if it won't provide it for 25 to 40 hours per week. The only reason some states are willing to pay the big bucks to provide intense early ABA is that it SAVES them money in the long run. It works THAT well.
If I were in your shoes, I'd just get the girls as much as you can from the school district (this is where a good advocate can come in). Whatever techniques are used, it's CRITICAL to get to those brains when they are VERY young. NEurologically, windows of opportunity for learning certain skills begin to close VERY young. Start something -- anything -- and move on from there.
Fred, I think a lot of it is about hours logged or what Temple Grandin calls "engaging the child"--you definitely don't want them zoning out for hours on end. Having said that, it is unreasonable to think that time with a sibling or parents is not useful or important. I also cannot access ABA, so I just compiled what I thought the minimum of 25 hours worth of services would be: a combo of ST, OT, TEACCH, and preschool--I had some notion that throwing a lot of hours at my son would be effective. I am slowly realizing that this schedule is just too intense for him--and having not matched him too well in some of the programs means that he has actually picked up some bad habits. He is the highest functioning in the autism environments he's in and I can't think of that as good. I don't think he is challenged enough. He performed better when all he had was preschool and speech therapy--I think moving up to 25 hours per week has just exhausted and stressed him and the result is that he's having trouble keeping it all together by the end of the week: is THAT learning? We all know what logging in too many hours of running produces: injury--there is a limit with running--and I guess I'm of the school that a day off of running to let the body recuperate is a good thing. The vast majority of people would simply injure themselves if they logged in the hours necessary to run a marathon. Back to ASD, I'm now thinking that I need to cut back on some of the hours my son spends in an autism environment because he needs to be challenged more with typical peers. I feel the autism environment is too sheltered for him. Plus, I'm running him around so much in the car that I can't have fun with him any more or set up play dates with typical peers--the playdates with typical peers are an excellent training ground. That is, after all, the real world. You have to really watch what people recommend to you. Some of the strategies people come up with don't make any sense. They wanted one calming strategy for my son to be to get to sit on the teacher's lap! Now, why on earth at 5 years old would I start to get my son who will go to a mainstream kindergarten to seek out sitting on a teacher's lap?! My son has NEVER wanted to sit on the teacher's lap and the teachers don't have time to have a child on their lap while they're trying to teach a room full of kids, so I thought this was completely BIZARRE. I am frustrated that I continue to have to be so engaged with every detail of my son's treatment program because it is a full-time job, but it certainly does not give me confidence to let go when people are coming up with WACKY solutions. Having said that, in one autism environment, the people are incredibly talented. When you see talent, you'll know--but even though the people are great there--my son is the highest functioning and I just feel that he is not getting enough. However, I'll keep him there for the time being because they are a set of experienced professionals who I know will address my concerns--but there are a number of people out there who really have no idea what they are doing and they carry all sorts of degrees. Be careful.