[Sara White]

In reply to Elaine,

Although I don't have a lot of experience working with multilingual families I do have some knowledge in the area of language acquisition in children with autism. Based on that knowledge I would not recommend that families start teaching their child in one language and then switch to a different langauge part way through. For most children with autism, that would equate to starting back at square one when the child is 5. Because most children with autism have such extreme difficulty with language acquisition I would recommend picking the one language that the family feels would be most beneficial for the child to learn in the long run based on factors mentioned earlier (e.g., Will the family be staying in Canada permanently? What is the English proficiency of the parents?, etc.).

The families should also realize that in the early stages of language acquistion the most important concept that the child is learning is that using language gets his/her needs met more effectively than the behaviors he/she has been using in the past. That is, in order for the child to learn the communicative function of language, initially ALL attempts in ALL environments need to be reinforced. If this level of reinforcement does not occur in the early stages of acquisition the child will keep falling back on the fail safe behaviors that have been effective for him/her in the past (e.g., tantruming, hand leading, etc.).

I don't know if I'm explaining myself very well, but the essential point is that the child's communication must be in a form that's understandable across all of the enviroments that he/she will be in. If the language across those environments is consistent, then the choice is easy. If not then the parents have to decide which environment will be the easiest to change.

[Sara White]

I realize that most of the discussion driven by the Anonymous SEA is mostly over, but I felt it necessary to point out a couple more interesting points in the posting:

1. I find it very curious/confusing that it is OK and infact even acceptable for a SEA to be brought up to speed by a qualified nurse for children with specific medical needs, but that this same procedure (i.e., for a therapist to be educated in an on-going manner by a qualified professional) is not acceptable for behavior therapist.

2. I'm also very curious about which corporation in Big Corporate America is bank rolling this whole conspiracy, because I definitely want a piece of that action. I've worked in both Canada and in many states in the US and have yet to find a program that is funded by a private corporation spouting out propoganda (I guess I've really been missing the boat:) I also doubt that parents would be spending large amounts of their own money (in the range of $40 to $60 thousand dollars per year) if there were some multilevel marketing scheme out there that would pay for it!

3. With regards to the comment "And lets be very frank,,, it's because then you don't have to pay for this therapy anymore,,, the school district can pay it with Special Ed funds." … isn't that the way it should be? If it's medically necessary it would infer that ABA is the treatment of choice for autism. If it is the treatment of choice/the only effective treatment shouldn't it be delivered in an educational setting as well? Granted if parents don't like it they can choose to enroll their children in private schools, but it seems like it's just that attitude that has lead to public schools being viewed as substandard and nonprogressive institutions of education that you enroll your children in only if you can't afford anything better. Just a thought.

You seem to be accusing parents on this list as being brainwashed somehow by the all powerful and all mighty FEAT (wouldn't it be nice:). I view them as well-educated (regardless of their level of formal education) powerful advocates for their children with autism. I have worked in this field for approximately seven years now and for at least four of those have been involved in designing behavioral programs for children with autism. I have also participated in several IEP's and have seen children with similar characteristics get offered two entirely different educational programs depending on the parents that are involved in the process. The old adage "the squeaky wheel gets the grease" really does hold true in the education system (at least in my experience). I'm not saying that parents should alienate people in the process if it's not necessary, but I also don't think that they should be made to feel guilty if they have to take it to that level.

I think that anyone who is not the parent of a child with autism can not presume to even begin to comprehend the battles that parents go through on a daily basis. I admire each and every one of you and wish you the best of luck in what obviously continues to be an uphill battle.

[Sara White]

I personally would add a few caveats to using a Board Certified Behavior Analyst as a consultant. I have my certification and can tell you that while this certification will ensure that the consultant has an all-round general knowledge of applied behavior analysis, it will in no way guarentee that he or she has any experience in discrete trial programming for children with autism. While the BCBA certification is a good starting point, I feel that it is essential that consultants also have a great deal of supervised experience in working with children with autism specifically doing discrete trial programming. The certification basically lets you know that the person knows ABA, but not necessarily autism.

Sara White, MA, BCBA

[Sara White]

Again … a few points of clarification on another anonymous post.

"For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study."

I think that one needs to consider the outcome variable that is important to you when looking at scientific data. Is it important that kids "recover", "become indistinguishable from their peers", or "lose the diagnosis"? Or is it important that they improve their skills in the areas of communication, play, academics and social interaction. I for one put emphasis on the later. While I agree that no study has been able to replicate the 47% of kids that "recovered" that Lovaas found in his 1987 study there have been several other studies (e.g., Brinbrauer & Leach, 1993, Smith, et al., 1997, and Sheinkopf and Siegel, 1998) that have shown that though not as many children "recovered", most of the children in the experimental groups made significant gains in skill and IQ. The point being that whether or not a finding has been replicated may depend on which part of the finding you're looking at.

Also, it should be pointed out that ABA and discrete trial are technically not equivalent terms. Discrete trial (or the Lovaas method) is one particular technique that falls under the umbrella of ABA. If we look at the research literature on ABA as a whole, there are even more studies and more support for other intervention techniques which have been replicated many times over (e.g., functional communication training to reduce aggressive or self-injurious behavior or specific methods of toilet training).

So, again it comes back to the point that ABA has been proven to be an effective teaching method for children with autism, the findings have been replicated and again ABA as a whole is the only area of intervention for children with autism that has been empirically validated.

Sara

P.S. Again, a lot of these references are in the NY Department of Health Clinical Guidelines if anyone is interested.

[Sara White]

Again … a few points of clarification on another anonymous post.

"For a treatment to be validated on scientific method it must be able to be replicated…. No one has been able to replicate the Lovaas' study."

I think that one needs to consider the outcome variable that is important to you when looking at scientific data. Is it important that kids "recover", "become indistinguishable from their peers", or "loose the diagnosis"? Or is it important that they improve their skills in the areas of communication, play, academics and social interaction. I for one put emphasis on the later. While I agree that no study has been able to replicate the 47% of kids that "recovered" that Lovaas found in his 1987 study there have been several other studies (e.g., Brinbrauer & Leach, 1993, Smith, et al., 1997, and Sheinkopf and Siegel, 1998) that have shown that though not as many children "recovered", most of the children in the experimental groups made significant gains in skill and IQ. The point being that whether or not a finding has been replicated may depend on your interpretation of that finding.

Also, it should be pointed out that ABA and discrete trial are technically not equivalent terms. Discrete trial (or the Lovaas method) is one particular technique that falls under the umbrella of ABA. If we look at the research literature on ABA as a whole, there are even more studies and more support for other intervention techniques which have been replicated many times over (e.g., functional communication training to reduce aggressive or self-injurious behavior or specific methods of toilet training).

So, again it comes back to the point that ABA has been proven to be an effective teaching method for children with autism, the findings have been feplicated and again ABA as a whole is the only area of intervention for children with autism that has been empirically validated.

Sara

P.S. Again, a lot of these references are in the NY Department of Health Clinical Guidelines if anyone is interested.

[Sara White]

While I definitely sympathize with any parent that can not afford treatment for their child, I think that there are a few factual points from anonymous' post that bear correcting:

"I also chose not to do it because the original studies came from Nazi Germany when they were trying to make normal human beings into robots. A far cry from what I wanted for my son."

I'm not sure where this information came from and whether you are referring to the original ABA studies or the original studies of ABA with children with autism, but in either case I can ASSURE you that this information is incorrect. The original work on ABA with humans was done by B.F. Skinner and his followers in the 1950's and 60's in the United States. The original work applying ABA to children with autism was done by Lovaas in the 1970's again in the US.

"There are many protocols for autism that have some basis in science and are backed with scientific trials. Double blind studies…. DMG, Secretin, and nutritional supplements, music therapy, auditory integration to name a few."

I would agree that in the loose sense of the term you could say that some of the methods mentioned have "some basis in science" but I would also add "but not much" at the end of that statement. To my knowledge there are no studies published in peer reviewed scientific journals (bear in mind that any "study" can be posted on the internet and that by no means means that it's "scientific) proving the effectiveness of any of the mentioned therapies for autism … or any other therapy for that matter aside from ABA for children with autism. I know that some trials with secretin are currently in progress, but none of that data is yet available. As for music therapy and auditory integration training, I would refer parents to the Clinical Practice Guideline Technical Report: Autism/Pervasive Developmental Disorders Assessment and Intervention for Young Children put out by the New York State Department of Health Early Intervention Program in 2001. In this document all of the available interventions for children with austism are reviewed by looking at data published in scientific journals. The findings of these articles and a critique of the scientific methodlogy used in each, along with risks and benefits to each type of therapy are clearly outlined. To paraphrase their findings, the only method for treatment of children with autism that has scientific evidence is ABA (not strictly discrete trial therapy, but ABA as a whole). While there is some evidence that psychoactive medications may reduce some maladaptive behaviors, in terms of teaching children new skills, ABA has been the only intervention that has been empirically validated. DMG, auditory integration, secretin, and music therapy were found by the panel to have insufficient scientific support.

Just a few points that I thought warranted clarification. If anyone wants information on how to get a copy of the NYDOH guidelines, they can email me and I would be happy to help.

Sara

[Sara White]

To jump off on the medical analogy again, I would disagree with the point on chemotherapy. If a person's chemotherapy isn't working informed consumers generally speaking will attempt to research other alternatives and then present them to their doctor and ask advice as to the evidence for and possible side effects of those treatments. As long as the individual doesn't go trying the interventions WITHOUT advice that would be the important point.

[Sara White]

While I do agree that team members should not be implementing interventions without first having the approval of the consultant, I disagree that they should not be attempting to come up with potential interventions. Depending on the position of this particular team, it is possible that their consultant may only see the child once every three months or so. If this is the case, while the consultant does have extensive knowledge regarding principle and application of behavior analysis and specific techniques for reduction of aggression, he or she does not have an intimate knowledge of that particular child. Yes, behavior analysis is a science, but there is also a certain art to that science as it currently stands. There is no single intervention that is universally appropriate for reduction of aggressive behavior. There is also not a formula that can be used in which child characteristics and problem behaviors are entered and the most appropriate intervention is calculated. As such, knowledge of BOTH behavioral principles and the specific child are necessary but do not provide an automatic answer.
Speaking as a consultant who has been in a similar position, some of the most effective suggestions for interventions or pieces of interventions have come from team members who work on a daily basis with the child and have an intimate working knowledge of the behavior problem in question. I do wish to stress, however, that there is a chain of command so to speak that should be followed. Team members should feel free to make suggestions to their consultant and work with them in a collaborative fashion, but they should NOT implement those ideas without first speaking with their consultant.
To go back to the medical analogy, nurses are the front line workers in a hospital setting. They too have some knowledge medical interventions as they implement these interventions on some level daily. They also likely have a more intimate knowledge of the current status of the patients than doctors do as they have more contact with individual patients. If they notice that an intervention is not effective and also notice that due to particular patient charactertics that another intervention may be more appropriate, while they would never implement the intervention without first consulting the doctor, they do have a certain ethical obligation to bring both of these factors to the doctors attention. I think that a therapists relationship with a consultant should be viewed in the same way.

[Sara White]

I'm new to this whole posting thing, but I wanted to respond to the posting by David DiSanto on last Monday. I worked for two years in BC before moving to California to go to school. In the area where I was in California (not LA) there was a Lovaas replication site. While I can't speak for all of the replication sites I can say that while they had some tutors who were excellent and very well trained, they also had people who were not as good and had little training. There is a high demand for tutors and a low supply everywhere. I guess what I'm trying to say is that the individual and NOT the training is what is important. I have seen tutors in Vancouver who are superior in training and skill to Lovaas trained tutors in California. Like David said it really comes down to the ability and experience of your supervisor.

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