Are You a "Broken Record?"

How NOT to be a Broken Record - Teachers and parents often find themselves repeating instructions over and over again. If you are delivering an instruction and you are unsure whether your student knows how to respond, prompt (or help) your student to respond appropriately. If your student has demonstrated an understanding of your instruction in the past and is simply not complying, a good rule of thumb to remember is the Two-Chances Rule*:
1. Establish attending and state your instruction a first time. Allow a moment for your student to respond (because some children require a processing period. As you get to know your students, you will learn each student's response period).
2. If your student does not respond correctly, restate your instruction. Although your student may have appeared to be attending, it is possible your student was distracted by something not obvious to you, such as the distant sound of a siren or the air conditioner.
3. If your student still does not respond, prompt him to respond appropriately.
By consistently allowing only two chances to respond before prompting, your student will learn to comply with your instruction rather than practicing not responding as you repeat yourself. *A tip I recommend to all parents as well!

The Vaccine Debate

The first, and most common question I hear from people when they find out I work with children with ASD's is, "Do you think vaccines cause Autism?"
I have worked with children whose parents describe a definite change in their children immediately following a vaccine, from normal milestone-reaching development to a complete retreat, so it is difficult for me to say that it is impossible vaccines did not play a role in the development of the Autism in this children. However, I have also worked with children with ASD's who were delayed in development from the very beginning. Recently a doctor who serves a large Amish community in the Northeast appeared on Larry King. He discussed vaccinating each child in the Amish community of close to 10,000 people and stated that there is only one documented case of Autism. The current research does not support a casual link between vaccines and Autism. (If vaccines caused Autism, every child who has been vaccinated would be Autistic, right?) But since we still do not know what exactly does cause Autism, I find it difficult to rule-out the vaccine correlation altogether.
I am not a epidemiologist or a medical doctor, but based on my experiences with hundreds of families and the current research, my position is this:
I believe there is a genetic predisposition to developing an Autism Spectrum Disorder that is triggered by some sort of environmental factor, and for some children that triggering factor could have been a vaccine (or multiple vaccines administered all at once).
There is no Autism in my family, but I was still quite nervous about vaccinating my child (because we still just don't know). My husband and I chose to vaccinate our son, but on a modified schedule. I would think it is pretty overwhelming to the tiny bodies of newborn babies to have multiple vaccines in one day. Plus, if your child does have a negative reaction, it is difficult to determine which vaccine is to blame. We had our son vaccinated one at a time with at least a week's time between each shot, so his body would have time to absorb the antibodies before bombarding it with more and so we could keep a closer eye on him during the process.
The decision over whether to vaccinate your child is certainly a personal decision that should be made by parents after conducting some research into the current scientifically- validated and peer-reviewed published work as well as a thorough family history.
Did you know that you can have your child tested for antibodies before administering the vaccines? Some children naturally have immunities to diseases, based on their "titers" hat can be detected by a blood test. Such a test can be costly (much more-so than the vaccines themselves) so many insurance companies will not cover the titers' test. But if you have a serious concern regarding vaccinating your child, you may consider having the titers' test conducted before making your final decision.

A Good Autism Consultant

I have people contact me from across the country and share awful stories about how their Autism Consultants has been running their children's programs. The saddest part about it is the fact that most parents don't realize there is better service out there.

*You never know which private agency your child's case will be contracted out to for services and you often cannot choose whom to work with when granted a contract through the Regional Center (or other state-regulated agency). Unfortunately, state-regulated agencies do not have the time to routinely audit the companies they provide contracts, and some companies become so driven by the monetary benefit of having contracts and renewing contracts when adequate progress is not met, that they begin to fail the families they serve. The following is a list of three of the most common issues associated with service providers:

• Your Service Provider and/or your Program Supervisor are not Board Certified Behavior Analysts (BCBA) or cannot provide evidence they are actively pursuing certification.

-While having a PhD or PsyD is definitely impressive on an educational level, it does not necessarily mean the professional you are working with has had experience with children on the Autism Spectrum. Companies will often hire such individuals in order to justify charging higher fees. Dr. Robert W. Montgomery, BCBA, of Reinforcement Unlimited explains: "Being a licensed psychologist does not mean that the person has ever had any coursework or supervision in ABA or Behavior Analysis at all. Very few licensed psychologists are in fact qualified by training or experience to develop, supervise, or implement an ABA program." The person to look for is a Board Certified Behavior Analyst (BCBA). Since this is a fairly new certification, it is possible to find many professionals currently in the program. Unless your Program Supervisor is already certified, or actively pursuing certification, you should be weary of the techniques they are using. All professionals in the field of Autism must obtain the BCBA certification eventually in order to be considered qualified to work with your child. As a matter of fact, the California Department of Education already requires that "the IEP team shall include [a] behavioral intervention case manager with documented training in behavior analysis," under Title 5, CCR 3052. -You have a right to request such documentation.

• Another note: Applied Behavior Analysis is a specific, scientific based approach to managing behaviors and educating a person with an ASD/PDD. Your Case Supervisor should routinely show you graphical representations of your child's progress. If you have not seen data collected for graphical analysis, you are NOT being provided with ABA services. Dr. Jose Martinez-Diaz of the Behavior Analyst Certification Board describes graphs as "the fundamental tool for organizing, summarizing, interpreting, and communicating the results of ABA."

• Your Program Supervisor fails to observe your child at least once every two weeks.

-Ideally, your Case Supervisor will develop a relationship with your child just as your child's tutors will during the course of his program. This means she will need to be making face-to-face contact with you at least once a week. Unfortunately, with the average caseload thrown at Program Supervisors, a weekly consultation is not always realistic. But, how can the Supervisor adequately assess the progress (or lack of progress) that your child is making without seeing it for herself? For example, California's Department of Education states that in order to appropriately evaluate a Behavior Intervention Plan, "Measures of the frequency, duration, and intensity of the targeted behavior shall be taken at scheduled intervals across activities, settings, people, and times of the day" and be compared with original baseline data that was also collected " across activities, settings, people, and times of the day." This obviously requires a significant amount of initial direct observation in order to collect baseline data, as well as regular hours of observation in order to evaluate the effectiveness of the program. The final report of your Program Supervisor has a great impact on the continuation of your services. The report cannot possibly be accurate if the Supervisor has not taken the time to observe your child along the course of the services contract.

• Your Program Supervisor cannot/will not answer your questions.

-In all fairness, the course of Autism and other PDD's involves constant discovery and is a learning processes for everyone involved. However, your Program Supervisor should be experienced enough to answer most of your questions, especially regarding the development of your program and behavior intervention strategies implemented. According to David Celiberti, a Board-Certified Behavior Analyst and leading advocate in the profession for Applied Behavior Analysis, unqualified case managers will "act defensively when parents ask questions about services, service provider competencies or recommendations." If your Program Supervisor is unable to answer your questions, you have reason for concern! Allow her a chance to find the answers you are looking for, but be sure she follows through and gets back to you in a timely manner.
The certification granted by the Board of Behavior Analysts is currently the only nationally recognized program that assures the professional has had specialized education, training, and supervision applicable to Applied Behavior Analysis. You can learn more about this certification and qualifications by going to the website of the Behavior Analyst Certification Board and looking under "consumer information." www.bacb.com

PECS or Sign Language?

The debate over whether to use the Picture Exchange Communication System or sign language with non-verbal children with ASDs continues today. The end goal is for our children to effectively communicate, right? So there are a few things to consider:
-How good are your child's fine motor skills? Would he have the ability to manipulate his hands and fingers to form signs?
-How good are your child's imitation skills? Does your child imitate actions when asked to do so? This is the way you would teach your child to sign... To imitate the sign as you show it to him.
-Do you live in an area of the country that has a signing community? While communities that sign are typically small, they do exist. If your child's only way to communicate is to sign and the only other people in his world that can communicate with him are his parents, is that fair? What happens when he gets older and wants to socialize with others but none of his peers know how to sign?
I believe sign language is beautiful and enables the individual to have strong and meaningful relationships with others. The icons for the PECS can limit language and communication, to an extent.
BUT, the majority of young, non-verbal children with Autism I have worked with picked up more easily on the PECS, mainly because the icons are more concrete representations of the learning-labels than the sign and the format of the system can be altered to suit the needs of the child (bigger photos, representative objects, etc.). And, while parents and family members will learn sign language to communicate with their loved one, if no one else in the community can understand him, he can become frustrated. But most everyone can understand a photo of a hamburger or a voice-output device requesting a hamburger (which is what the PECS will ultimately lead to).
It ultimately comes down to the ability of your child and the preference of the family. These are simply some important things to consider.

What is the standard pay rate for a Behavior Analyst?

This is a difficult question to answer. The pay rate depends on educational and real-life experience as well as the Behavior Analyst's ability to think on his/her feet and be effective with your child. I have worked with PhD's who didn't have a clue how to educate children with Autism or reduce their inappropriate behaviors because the graduates spent all their time reading books for school rather than working with kids. I have worked with people who had BA's in something completely unrelated to Autism and were great because they had great mentors and gained wonderful, hands-on, experience.
Today there is a Certification program for Behavior Analysis. The programs are typically costly and require a specific amount of experience, similar to the "practicum hours" of a psychologist, so you can count on rates similar to those of psychologists for those who are going through or have completed the BCBA/BCBA program.
A Behavior Analyst is typically not a tutor. If you hire a Behavior Analyst to work directly with your child, you can count on a hefty associated fee because the hourly is probably high. However, if you find someone you trust with your child and you can see progress in a reasonable amount of time, would you really sacrifice the teacher or program supervisor in order to save some money? Just as not all teachers are created equal, not all Behavior Analysts are created equal. Some people simply have the "it" factor that allows them to really connect with our kids.
When people are willing to pay hundreds of dollars for dog grooming and thousands of dollars on "snake oil" treatments to reduce wrinkles and cellulite, I would think investing in your child's education is pretty reasonable.
Temple Grandin once said that her success is in large part due to the great teachers she had when she was young and "a good teacher is worth her weight in gold."

Clicker Training for Kids with Autism?

Apparently there are "professionals" out there who are attempting to "clicker train" our unique kids. BUYER BEWARE! Clicker training is for animals, not children. There are other, more natural, signals we can give our kiddos rather than following them around with a clicker. Unless the original founder of the clicker training program is teaching your child, there is a very good chance they are not doing it right. The supporting evidence for the clicker training is not strong enough anyhow.

Parents as Therapists

Sometimes parents ask about learning to conduct their own ABA program at home and I hesitate to respond, but I feel it is an important topic to discuss. It is essential for parents to learn the basics of ABA and how it applies to their children's specific behaviors, but I feel it is best to leave daily sessions to other trained professionals. The parent-child relationship is a vital component to the well-being of the family and once the parent begins placing demands on the child in a controlled ABA setting for session, that relationship can become confused.
I try to look at it from the child's point of view: Up until now (sometimes three, five, or more years), Mom and Dad have played with and nurtured me. Now we are engaged in a systematic learning environment alien to anything we have done together before.
Beginning an ABA program on your own will result in an increase of undesired behaviors or the emergence of new behaviors altogether and will frustrate both participants. In addition, it is often difficult for a parent to objectively look at the function of their child's behavior, which in turn can result in the wrong approach to addressing such behaviors.
The best thing to do is to have your child start a program with an experienced teacher and then slowly involve yourself during Natural Environment Teaching as your child learns to generalize his skills. Parents can also apply play therapy and other natural teaching techniques throughout the day as long as the demands are integrated slowly so as not to disrupt the relationship already established with the child.

What is the right environment for my child?

I always recommend that parents ensure their children are in classrooms with children who are either at their same functioning level or higher. If your child is the brightest, most well-behaved child in his special-ed classroom, his peers can learn from him but who will he learn from? Chances are he will pick up on the not-so-great behaviors exhibited by his classmates! If you realize this is the current situation for your child, submit a written request to your child's principal expressing your concern and your interest in exploring other options for your child. Good luck!

To "Stim" or Not to "Stim?"

Parents and Teachers are often concerned with their kiddos' self-stim (self-stimulatory or stereotypical) behavior. They ask me if it is okay to allow the kiddos to stim or to stop the stimming. There is some contradicting information out their regarding stereotypical behaviors. I have heard some researchers believe that to interfere with a child's stereotypical behavior is to deprive that child's brain of necessary input and can even result in brain damage. I've also met professionals who believe that one must "get down to the child's level" by engaging in the same stereotypical behavior in order to establish a relationship with the child. What I recommend to parents and teachers alike is to comment on the activity the child is engaged in and then redirect the child to a more appropriate behavior or activity.
For example, many of my little ones enjoy turning toy cars upside-down and spinning the wheels. We comment on the activity: "You are spinning the wheel" or "Watch the wheel go round and round" and then show the child (model) how to more "appropriately" play with the car by rolling it on the ground. If it is a bit more difficult to find an appropriate counterpart to the stereotypical behavior such as flicking the lights on and off or repeatedly flapping a hand in front of the face, we comment on the behavior (label the action) and then redirect the child in something completely different to engage him so he cannot continue the behavior. Try it!
However, sometimes it is important to have something highly rewarding like when you are teaching the child something new. Allowing the child to engage in the stereotypical behavior is often more reinforcing than food rewards.

PECS -A Helpful Hint

If your child is not benefiting from PECS training, there are two things to consider. Make sure the person training your child has been professionally trained in PECS (NOT "self-trained" from the manual or a book) . -It is scary, but I have come across many professionals who teach children the PECS incorrectly. If your consultant is following the PECS protocol and your child is still not picking up on the process, the second thing to consider is whether your child is really understanding the icons he is using. I personally prefer photos with most of my kiddos over the cartoon-ish depictions of many computer programs out there. Remember! Our unique kiddos are concrete thinkers! Realistic depictions will probably have more meaning to them. You can always work toward the vague cartoon representations once your child masters the process.

Missing "The Window"

Parents often ask me, "Have I missed 'the window?' Is it too late for my child to benefit from one-on-one educational services?" I respond with a resounding, "NO!"
While the research up to this point has shown the most success in the shortest amount of time has occurred with the younger population, this does not mean older children on the Spectrum are incapable of learning. It simply means it may take a bit longer to acquire such skills at a later age. Consider the theory of the Language Acquisition Device. The LAD is considered a "window"in which the language of children explodes at a high rate. If you immerse a young child within another country, he can more easily learn the native language than you would if you began studying it now. Educating an older child on the Spectrum is very similar. He will still learn, but it just may take a bit longer than if he had started at a much younger age. It is never too late, but the earlier the better. So get started now!

Why Seek Private Services?

Consider the general differences between public and private schools. Public and private services for children on the Spectrum exhibit similar differences. Private services provide more individualized one-on-one attention and address the unique needs/goals of each child. Public service providers are often overworked and under-paid. While some of them have the best intentions at heart, they are often simply incapable of providing the services necessary to help their client reach his utmost potential. -And others are just doing a job rather than pursuing their passion of helping families.
Also, there are political entanglements within the public system that often interfere with the services provided to families (within schools districts as well as public agencies). We all want *the best* for our children. If you have the resources, get your little one the quality services he deserves as early as possible.

ABA and DTT

Sometimes I hear professionals misinform parents about what ABA consists of by telling them it is "basically Discrete Trial Teaching." ABA does not equal DTT. While DTT is based on the principles of ABA, this does not mean that that the only teaching method utilized in ABA programs is DTT. Unfortunately there are a lot of service providers and agencies out there that design their programs completely around table-time type DTT. A more solid program consists of other tools based on the principles of ABA such as Play Therapy and Natural Environment Teaching. Also, although classic programs from years ago used a variety of aversives, it is not common practice today. Unless your child exhibits serious behaviors and all other options have been exhausted, aversives are not necessary. Real ABA programs do not utilize screaming techniques or restraints. Be weary of anyone who promotes such tools and definitely seek a second opinion before moving forward.

Longest IEP in History

I recently accompanied a family to an IEP meeting in a small town that has never before had parents question the services their children receive. I come from San Diego, where services for children on the Autism Spectrum are fairly abundant in comparison. A typical IEP meeting for me is at least three hours long and includes an average of five additional team members. I was prepared for a long fight for what my client needed in order to make meaningful progress toward his goals, especially since this was his first real IEP meeting. (Every meeting for him up to this point was 20 minutes maximum!) Not surprisingly, the meeting lasted well over three hours and is now known as "The longest IEP in the history of the school district." -I think it is important to point out that my client received everything his parents requested, all of which was reasonable.
I wanted to share this experience because I know there are many parents used to showing up to their child's IEP for a brief meeting that turns into a simple conversational review of the progress made (or lack of). When the school district is held accountable for the education they are supposed to provide and the IEP is dissected line-by-line, the meeting will certainly last longer than 20 minutes. I know parents can be exhausted by the terminology and sometimes condescending attitude of school officials, which is why I often recommend bringing someone along to be your voice. I understand that I do not make many friends in school districts by advocating for parents, but frankly I don't care. I simply want our children to receive the services they are entitled. Fight the good fight!

Remember the Squeaky Wheel!

I cannot emphasize enough how important it is that you, as parents, badger your service providers to follow through with the services they claim to provide. If your regional center, school district, etc. talks to you about setting up a home program, school support, or other service, ask them when. Make them commit to a time-frame. Do not allow them to throw your child on the back-burner for when they are ready to get to you. Remember that "the squeaky wheel gets the oil?" Squeak as loud and as often as you can until your child is getting what he/she needs!

ABA or AVB?

There has been quite a bit of discussion as to whether ABA (Applied Behavior Analysis) programs are better than AVB (Applied Verbal Behavior) programs and which program design is best for what type of child. It is important to understand that Verbal Behavior programs are designed based on the principles of ABA. Some people are under the impression that ABA programs only utilize Discrete Trial Teaching (DTT) and do not focus on Verbal Behavior. While there are (unfortunately) consultants and agencies which mostly utilize DTT in their programs, DTT is not interchangeable with ABA. Again, DTT was designed based on the principles of ABA. DTT can be utilized to teach a variety of skills, including Verbal Behavior. I know the alphabet-soup associated with the treatments for educating individuals with developmental delays can be very confusing. I hope this short explanation can help to shed some light as to what a few of the terms mean. All the methodologies discussed are based on the work of Skinner. The procedures of instruction have been altered and improved slightly since he published "Verbal Behavior," but the concepts are all traced back to his work.
HTH,
Kirstin

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