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IN THIS ISSUE: CT FEAT Newsletter, Vol.3, No. 1, Winter 2000
Note: The content of this newsletter is, unless otherwise indicated, the property of Connecticut Families for Effective Autism Treatment, Inc. (CT FEAT) and is copyright protected. It may be used only with attribution. Copyright © 2000, CT FEAT, Inc.
Autism Task Force:
ABA Is Only Scientifically Validated Treatment
(Sue Frost Bennett)
Like most other states in recent years, Maine has experienced an increased number of legal cases concerned with the appropriateness of educational services provided to children with autism. In an effort to improve services, and reduce litigation, a professional association of special education administrators formed a task force in 1997 to develop 'best practice' guidelines based on scientific evidence.
The Maine Administrators of Services for Children with Disabilities (MADSEC) Autism Task Force was comprised of a diverse group of knowledgeable people, including special education directors, teachers, psychologists and parents. Their common task was to 'learn about different interventions, and to uncover the science that would substantiate, or fail to substantiate, the effectiveness of the intervention' (page 2).
The 1999 report that resulted from these deliberations has recently become available. The Report of the MADSEC Autism Task Force (hereafter referred to as the Report) found that only one intervention was 'substantiated as effective based upon the scope and quality of research': applied behavior analysis (ABA) (page 6).
ABA : Intensive Individualized Instruction Delivered by Specially Trained Staff
The Report recognizes that an effective ABA intervention program requires many hours of intensive, individual instruction. 'Intensive' means one-to-one treatment in which carefully planned learning opportunities are provided and reinforced at a high rate by trained therapists and teachers for at least 30 (preferably 40) hours a week, 7 days a week, for at least two years' (emphasis in original, quoting a 1995 article by Gina Green, Ph.D.). The Report references controlled studies in which 'young autistic children who received less intensive treatment made some modest gains, but normal or near-normal functioning was achieved reliably only when treatment was provided for 30-40 hours a week, on average, for at least two years' (page 27).
The Report further notes that practitioners of ABA 'require specialized training in addition to that normally gained by professionals specializing in behavior impairment, special education, child development or psychology' (page 7).
The Report also recommends using ABA 's systematic evaluative procedures to assess the 'efficacy of any intervention intended to affect individual learning and behavior.' The Report further pointed out that, 'ABA's emphasis on functional assessment and positive behavioral support will help meet the heightened standards of IDEA '97. Its emphasis on measurable goals and reliable data collection will substantiate the child's progress in the event of due process' (page 6, emphasis in the original).
The Report notes that 'detractors theorize [that] behavioral programs produce robotic children.' But the research reviewed by MADSEC revealed nothing to substantiate this theory. 'On the contrary, one of the more consistent findings of the research is improved social skills in those children treated.' And, 'to date, there are no published studies which refute the effectiveness of this approach' (page 29).
While some other interventions may 'show promise,' they are 'not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science.' These include: 'Auditory Integration Training (AIT),' 'the Miller Method,' 'Sensory Integration,' and 'Treatment and Education of Autistic and Communication Handicapped Children (TEACCH)' (page 6). The Report advises professionals considering AIT, the Miller Method, or SI to disclose their status as 'experimental' treatments to the 'key decision-makers influencing the child's intervention ' (pages 36, 49, 53).
Sensory Integration
In assessing Sensory Integration (SI), the task force found that the limited research to date has been unable 'to identify SI as an independent variable responsible for positive change in a child's behaviors or skills. In at least one study, SI was shown to actually increase self-injurious behaviors'; however, 'it may offer enjoyable, healthy physical activity' (page 52).
The Report recommends that 'professionals considering SI should distinguish the intervention from other methods that may be employed by occupational and physical therapists to achieve fine motor, gross motor and adaptive daily living goals' (page 53).
Division TEACCH
Although over 250 research studies have been conducted by or in collaboration with Division TEACCH since 1965, few have been 'peer-reviewed studies of outcome replications conducted by researchers not affiliated with TEACCH.' The Report concludes that 'professionals considering TEACCH methods should portray the program as lacking independent verification of its effectiveness, and should disclose this status to key decision makers influencing the child's intervention' (page 60).
No Scientific Evaluation of Any Kind: Son Rise and Floor Time
According to the Report, interventions that are 'without scientific evaluation of any kind' include the Son-Rise program and Stanley Greenspan's Developmental, Individual Difference, Relationship (DIR) model (more commonly known as 'Floor Time') (page 7). There have been no peer-reviewed, published studies substantiating the effectiveness of either of these treatment models.
'Pending rigorous further investigation of [DIR/Floor Time's] effectiveness in autism remediation and outcome statistics, professionals considering [the model] should give strong consideration to the potential harm' that may be imposed on children and their families by the model's implication that autism may be the result of poor parenting (page 46).
Conclusion
The Report emphasizes the importance of early, intensive, scientifically validated intervention for children with autism. Children who receive such intervention have substantially more positive outcomes than those who do not, who usually will require special or custodial care throughout their lives. The cost of such lifetime care is estimated at $13 billion a year - far exceeding the cost of providing timely, effective treatment (page 6).
(To receive a copy of the Report of the MADSEC Autism Task Force, make out a check to MADSEC for $20 and mail it to: MADSEC, 675 Western Avenue Suite 2, Manchester, ME 04351. For more information, call (207) 626-3380).
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Autism Academy:
Multi-Media Comes to ABA
(J. Tyler Fovel, M.A.)
Successful educational programs for individuals with autism depend on the careful and systematic application of Applied Behavior Analysis (ABA) teaching technology. This applies not just to students, but also to the teachers who will be instructing them.
Eden II, which has provided center-based ABA services at its 'Genesis School' in New York since 1995, has produced a new computer software program that can greatly enhance the training of teachers. Autism Academy Courseware, Volume One - Behavioral Programming for Children With Autism provides an excellent introduction to ABA-based teaching principles, including such topics as: reinforcement, prompting, discrete-trial teaching, data collection, classroom organization, and curricula.
Of course, a computer program cannot substitute for the supervision of an experienced consultant and live-demonstration feedback. But Autism Academy helps meet the tremendous need for solid ABA training materials that go beyond what can be presented in written descriptions.
The program is taught in a virtual 'classroom.' Topics are presented first in lecture format, followed by lessons, which present selected information and questions. During the lessons, feedback is given for both correct and incorrect user responses.
I thought that the lessons were much more effectively presented than the lectures. In the lectures, there are insufficient opportunities to respond to the large quantity of material being presented. Consequently, some important material may be too easily ignored. Since the user does not control the quick pace of the lecture, much material can go by without even the simple response of turning a page or advancing a screen. This is a serious flaw.
By contrast, the lessons present a fewer number of important concepts and give the user plenty of opportunity to respond. It’s here that the CD shines and merits real praise. Using plenty of video, multiple-choice questions, and even real-time data taking, the user interacts with the material often. The video example of fading physical prompts, impossible to adequately convey in words, is excellent. There are numerous demonstrations of correct and incorrect techniques for reinforcing, pacing the teaching trials, and even a video tour of an ABA classroom.
Even in the lessons, however, the material can be sometimes frustratingly complex for a person new to behavior analysis. For example, there is a section on identifying mistakes of programming, where a seven-item list is introduced but where the last three items (the most complex) are not extensively reviewed.
Occasionally, I did not agree with the wording of a concept or the use of a term. For example, I think that the discussion on 'differential reinforcement' focuses on the wrong aspect of the word differential. I am more used to hearing the word refer to reinforcing one behavior and not another (as in Differential Reinforcement of Other behaviors or 'DRO') rather than referring to the differing reinforcing value of various stimuli. For these reasons, it will be necessary to discuss the CD with trainees and make sure that their understanding of the terminology is consistent with the terminology used in their ABA program.
The material presented in Autism Academy is standard and vital for all teachers to understand. The script is written in a somewhat technical manner—at times unnecessarily technical--and the narration is not as fluid or as interestingly inflected as we have come to expect in this world of video games and professionally narrated TV specials. But the information is there, even if you might have to listen twice. The text of each lecture is included in the Forms section.
The overall visual quality is not exactly 'state of the art.' For example, the 3-D textures are a little surreal looking and the classroom teacher moves and speaks in awkward, jerky motions. But on the whole, the graphics (both animated and static) are well placed and embellish the narration. Occasionally, video is also used to make a point.
For the most part, interaction and movement in the program is well thought out. The main topics are arrayed at the bottom of the screen with video-style controls placed at the right to advance, back up, and stop. A control panel called a remote is placed at the left, which allows a selection among lectures, lessons, a glossary of behavior analytical terms, and printable forms. Little messages fade in an out occasionally to help the novice user navigate.
There are some annoying glitches in the program. One example is the omission of a return control when one wants to interrupt a lecture or lesson and move to the glossary. In order to return to my original place in the lecture, I had to restart the entire section and then skip ahead. And the glossary, itself, scrolls extremely slowly. Also, the printing function had some serious problems. For example, in order to print a single page, one must individually cancel all pages that should not be printed within the item (most of which are multi-paged). My advice to the programmers: get a different and easier to use printing module.
Don’t get me wrong--the interface gets the job done. The video ran extremely well, which is not an easy thing to accomplish. And, I loved grabbing and putting the furniture and programming objects in their proper places for a teaching session in the last section.
There may be imperfections here and there but this is a commendable initial version. Perhaps the authors could observe actual users interacting with the material in order to make revisions. In addition, the capacity to keep track of user scores might be helpful. Make no mistake--this CD is on the right track.
Those contemplating purchase should be aware that this is a basic training in elementary ABA terms and concepts. Additional reading, discussion, observation, and supervised hands-on experience certainly will be necessary in order to deliver a professional quality ABA program.
With quality professional input to ABA programs at a premium, basic instruction should be accomplished before the consultation, not during it. At $149.95, the cost for this program may be rather high. But it's probably worth the money when compared to the cost of a consultant doing the same 3-hour training separately for each new teacher or therapist. (Note that schools are required to buy a '3-pack' at $399.00.)
(J. Tyler Fovel, M.A., is the Senior Consultant for the LEARN ABA program in East Lyme, Connecticut)
Autism Academy Courseware, Volume One - Behavioral Programming for Children With Autism (1999) is a multi-media CD-ROM produced by Digital Vista for Eden II Programs, which wrote the curriculum. The program can be used with PC (WIN 95, 98, NT) and MAC (OS 8.0 and higher) computers. It costs $149.00 for individuals. Schools must purchase a 3-pack, at a price of $399.00. The program is available from Different Roads to Learning, (800) 853-1057; http://www.difflearn.com.
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Connecticut Center For Child Development
Offers Lecture Series
The Connecticut Center for Child Development (CCCD), a private school which uses instructional methods based on the principles of Applied Behavior Analysis (ABA), continues its excellent lecture series on Educating Children With Autism and Related Disabilities.
The lectures are available to interested individuals on a first-come, first-serve basis and will take place at CCCD’s facility in Milford, Connecticut. Seating is limited and early reservations are recommended. Call Beth Thompson to make a reservation at (203) 882-8810. Due to space limitations, please be sure to notify CCCD of cancellations as early as possible. The topics and dates of the lectures are as follows:
March 15, 2000, 7:00 p.m.
Lecture #6: Helping Children Learn to Follow Instructions
It is essential for children to be able to follow instructions from a variety of people, and in a variety of situations. Parents and other caregivers often find that children with autism do not consistently follow instructions. Specific strategies for teaching children to follow instructions consistently will be discussed.
Presented by: Patricia Fitzsimmons, M.S.
April 12, 2000, 7:00 p.m.
Lecture #7: The ABCs of IEPs and PPTs - It’s Not an Alphabet Soup
Understanding the basic terms and procedures, including parental rights, involved in special education is critical to ensuring effective advocacy for your child with special needs. Join us for this workshop to strengthen your effective participation in the special education process.
Presented by: Jan Calbro, M.S., and Denise Foster
May 10, 2000, 7:00 p.m.
Lecture #8: 'Show Me the Data': What Interventions Are Supported by Science?
A review of the literature evaluating interventions for children with autism and related disorders will be discussed. Clinical practice guidelines, published by the New York State Department of Health Early Intervention Program, will be reviewed. Guidelines for the evaluation of interventions, including ABA programs, will be discussed.
Presented by: Jodi Mazaleski, M.S., and Suzanne Letso
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Been To The Dentist Lately?
(Sue Frost Bennett)
As we all know, many 'normal' adults avoid going to the dentist. So imagine how much more difficult it is for young children with autism spectrum disorders (ASD)!
Not surprisingly, many parents of ASD children dread, and put off, that first visit to the dentist. Perhaps they fear that the child will misbehave. Or maybe they worry that others in the waiting room will think that they are horrible parents. Parents often have good reason to anticipate that their child simply will not tolerate the examination.
At a talk on February 9th, sponsored by CT FEAT, Barnet B. Baron, D.M.D., described some of the behavioral techniques he has used to desensitize children to dental visits. Dr. Baron may be uniquely qualified to lecture on this topic: he is both a very experienced pediatric dentist and the parent of an ASD son. And he's a wonderful, entertaining speaker to boot!
When To Start Going To The Dentist?
According to Dr. Baron, the earlier the child comes in for the first dental visit, the more likely it is that the dental procedures will be less invasive - thereby making the child's first experience there a positive one. The American Academy of Pediatric Dentistry recommends that children visit as early as one-year-old, especially if the parents are new to parenting.
There are other reasons to start early as well. The care of baby teeth is important. Children keep all their back baby teeth until they are about 12 years old. While only a small percentage of young children develop serious problems, like cysts and tumors, it is important to find such things early. Also, if a child has an accident and needs an emergency dental procedure, it will be a whole lot easier if the child is already familiar and comfortable with the dentist.
The First Visits: One Step At A TimeCs3 photo editing.
Dr. Baron advises parents to call the dentist ahead of time and let him or her know that their child has special needs. The dentist may want to meet with the parents, without the child, to learn more about the situation and to put together a plan of action. Good communication between the parents, dentist, and dental hygienist is crucial! Parents may also want to investigate whether their insurance companies cover behavior modification visits.
Dr. Baron prefers to set up a behavior modification plan that provides consistency, repetition, and calm. The child always goes to the same room, with the same dental hygienist and dentist. The appointment takes place for 10-20 minutes during a quiet time of day. Whenever possible, the parents wait in the waiting room, so that the child can focus on the dentist's or dental hygienist's instructions. Only one of them talks at a time.
Occasionally, a mild sedative may be needed. In that case, Dr. Baron has the parent bring the prescription to the office and give it there. If a child needs a major amount of work, he arranges for it to take place in the hospital. There, an anesthesiologist can monitor the child while leaving the dentist free to focus on the dental work. That way, the child continues to view the regular dental office as a positive place and will continue to tolerate less invasive procedures there.
During his first few visits with the child, Dr. Baron may focus only on establishing familiarity with the room and the people in it. He encourages the child to call everyone by their first names and gives the child pictures of the staff to take home. He also may engage the child in some playful activities, like rolling balls on the floor or 'playing the drums' on the stool or chair.
Dr. Baron breaks down the various aspects of the dental examination into small steps and then introduces just one part at a time, and sometimes only one part per visit, depending on what the child can tolerate. If the child gets really upset, he backs off and repeats the previous step. Each visit begins with a review of where they left off the last time. And before the next visit, the parent practices with the child at home, doing the next anticipated activity and using the same dental tools.
Initially, the child comes into the office every 1-2 weeks. Eventually, they build up to about once a month so that the child stays familiar with the office. He acknowledged that coming in so often--and only during a quiet time of day--can be especially difficult for working parents and may require some creativity.
A Behavior Modification Plan For A Four-Year-Old
Dr. Baron showed a videotape of a four-year-old boy who was afraid of just about every aspect of the dental experience, including sitting in the dental chair. So he started by having the child sit on a stool instead.
The first thing he introduced to this child was the feel of the dental gloves against the child's cheeks while counting to 10. Once Dr. Baron got to 10, the child got to take a short break, and then they did it again. Eventually, to lengthen the time, he switched to singing the alphabet song. The child knew that once they got to the letter Z, he would get another break. Then, to lengthen the time even further, Dr. Baron would pretend to lose his place in the song so that 'I would have to start all over!'
During the first few visits, the child was given a little bit of a favorite food each time he got a break. But Dr. Baron soon substituted a token board system (a clipboard with 10 pieces of Velcro cut to accommodate pennies, and a picture of the special reward the child would get at the end of the visit).
Whenever the child got a break, he added a penny to the board; he knew that once he'd added 10 pennies, the visit would be over and he would get the prize.
After teaching the child to tolerate the feel of the dental gloves, Dr. Baron introduced the sequential steps to the examination, and the various pieces of dental equipment it requires: the dental mirror; the air/water syringe and saliva ejector (a.k.a. 'wind' and 'bubbles'); toothpaste; the explorer (using it to count the child's fingers- and everyone else's!); and the dental handpiece (counting fingers with it too so that the child got used to its sound and the way it vibrates).
Each tool was used first on the child's fingernails or hands, before it was used on his teeth. The parent followed the same procedure at home each night (substituting a Braun electric toothbrush for the dental handpiece), while having the child sit back in a chair.
Only at this point, did Dr. Baron introduce the dental chair. First, he just showed the child how it goes up and down. Then he got the child to perch on the foot of the chair for a short ride, and then finally the child was willing to sit in the chair. Dr. Baron made a game of it, letting the child decide whether the chair should go up or back.
At this point, the child would sit in the chair and allow Dr. Baron to use all the previously-introduced tools in his mouth for 20 minutes at a time. As an added bonus for sitting and cooperating so well, Dr. Baron started his 'basketball clinic': he attached a small basketball hoop to the wall and, during each break, the child got to shoot baskets from the chair!
Though it was not shown on the video, the next skills the child needed to learn were how to tolerate a mouth prop and sit still for x-rays. No doubt Dr. Baron will make those experiences tolerable, if not exactly pleasurable, as well!
Obviously, every child is different. Dentists, dental hygienists, and parents need to be creative in their approach and gear it to the child. An effective reinforcement system, using rewards the child really wants, is a must. But clearly, with a dedicated and big-hearted dentist like Dr. Baron, children with autism can enjoy healthy teeth - and their trips to the dentist!
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ABA Course On The Internet
The University of North Texas (UNT) is offering an introductory course on applied behavior analysis (ABA) on the Internet beginning on May 15, 2000. The course has been especially developed for the 'distant learner' by Dr. Sigrid Glenn, Professor and chair of UNT’s Department of Behavior Analysis.
You can visit the course’s web site, at http://webct.courses.unt.edu/public/BEHV2300SG/, to get more information. The site also provides some sense of what it would be like to take a course on the Internet. For enrollment information, contact Dr. June Powell by email at: jpowell@scs.cmm.unt.edu.
With more than 25,000 students, UNT is the fourth largest university in Texas. It has been a pioneer in offering long-distance educational opportunities (e.g. satellite hook-ups at remote sites) and is considered one of the leading 'wired' universities in America.
This sort of outreach is evident in the collaboration between UNT and the Connecticut Center for Child Development (CCCD) to offer a Master of Science degree in Behavior Analysis. This program utilizes a variety of media, including special high-speed telephone lines and other teleconferencing equipment, which allows students at the CCCD facility to interact with the UNT instructors in 'real time.' There is also traditional classroom instruction, with an instructor present, at the CCCD location. To get more information about the CCCD/UNT program, visit the CCCD web site at: www.CCCDINC.org or call 203-882-8810.
Book Review: Teach Me Language
(Mareile Koenig, Ph.D., CCC-SLP, CBA, with help from E.C.)
Even four years after it was first published in 1996, the curriculum in Teach Me Language (TML) remains a singular resource for providing comprehensive, hands-on, explicit instructions for addressing the language weaknesses common to children with pervasive developmental disorders (PDD). The material is particularly well-suited to students with Asperger's syndrome and those who already have achieved the majority of skills typically taught in intensive behavioral intervention programs (e.g., Leaf & McEachin, 1999; Taylor & McDonough, 1996; Lovaas, 1981).
The lead author, Sabrina Freeman, Ph.D., is the parent of a child on the autism spectrum who benefited from many of the exercises that ultimately came to comprise TML. Freeman developed the material in consultation with an innovative speech pathologist. Co-author Lorelei Dak and expanded many of the basic activities provided by Freeman.e, a behavioral intervention professional, fine-tuned
Between the covers of the TML manual, users will find 410 pages describing more than 80 sets of activities (exercises, games, drills, and scripts) for targeting key skills in five areas: 1) social language; 2) general knowledge; 3) grammar and syntax; 4) advanced language development; and 5) academics and language-based concepts. Within each content domain, the skills are represented in a sequence from easier to more difficult.
Program Must be Customized
The authors don't intend for the material to be presented in any particular developmental sequence. Rather, they emphasize the need to customize the program, taking account of each child's specific strengths and deficits, which will vary enormously across the autism spectrum and among individual children. Some children may require experience with all of the exercises while others will require only a subset. Items should be selected by, or in collaboration with, behavioral consultants or speech pathologists.
We have found the areas of social language, general knowledge, and grammar particularly useful. The social language section focuses on conversational skills (e.g., topic cohesion, topic extension, volley patterns); the language of routine activities (e.g., answering the phone, ordering food in a restaurant); perspective taking; problem solving; thinking critically about safety issues in the social environment; and more.
The general knowledge section targets skills that enable a child to introduce and maintain topics of conversation, to develop a topic outline, and to formulate verbal narratives on a variety of topics. The section on grammar targets pronouns, verb structures, question formulation, the grammatical function of phrases, parts of language, and more.
Each individual skill within a content area is introduced relative to its role in the bigger developmental picture and with information about prerequisite skills. Activities that target individual skills are described in behavioral terms. Systematic patterns of prompting and prompt fading are used to bridge the gap between a child’s current and target performance levels. A description of the prompting patterns is included for each activity.
Reproducible materials accompany many of the exercises and games within the main volume. There is also a separate, companion volume, which provides additional reproducible forms. Recommendations for supplementary materials are also given.
In most cases, teachers will need to develop some additional materials (especially topic cards for various of the conversation and grammar games) which pertain to the individual child's interests, general knowledge, and developmental level. Usually teachers will need to consult with parents to obtain the necessary information (e.g. names of child's relatives; child's special likes and dislikes; movies the child has seen, etc.).
Student Prerequisites
According to the authors, there are several conditions that must be met in order for the book to be useful:
1) The child must be a 'visual learner,' i.e. able to assimilate information when it is presented visually. One of the book's basic techniques is to use a visual source (like a printed word, or an icon of some kind) to teach the component parts of a complex concept (e.g. the structural underpinnings of a conversation). Once a given concept is mastered, the visual prompt is faded. Some representative exercises illustrating this technique, are described below.
2) The child must be 'table ready and relatively compliant. 'As the authors observe, 'Compliance is a problem with this population of children, particularly when they are required to work on areas of weakness.' The authors recommend behavioral programs (e.g. 'Lovaas and Lovaas type training') to bring the child to the point where he or she is able to sit willingly and work on language skills such as these.
3) The child must be able to communicate in some way. The authors state that the drills can be effective even with nonverbal children provided they are able to use some alternative communication system (e.g. the Picture Exchange Communication System - PECS). But we haven't ourselves used the program with such children.
In our own experience, children can profit enormously from the curriculum as early as age four, provided that they can be taught to sight read some key words (e.g. the 'WH' words: who, what, when, where, and why) and meet the other criteria stated by the authors.
Teacher Prerequisites
Although TML is intended most of all for parents of children with autism, Asperger's Syndrome or related developmental disorders, the authors emphasize that the materials should be used only as 'a part of a therapy program overseen by professional consultants, and should not be used without the professional guidance of either a behavioral consultant or speech pathologist.'
Anyone teaching this curriculum, be they professionals, paraprofessionals, or experienced parents, needs a strong grounding in behavioral teaching techniques. Supreme defender franchise mac os. These techniques include (but aren't limited to): 1) skillful use of reinforcement (extremely critical); 2) prompting and fading; 3) breaking a skill down into its component parts; 3) assessing whether a child is 'ready' to learn a skill; 4) systematic instruction; and 5) training for generalization.
The curriculum also needs to be taught with intensity. According to the authors, the ideal scenario is to have the child work two hours a day on these activities, though less time may still be adequate for a given child. 'It is important to understand, however, that a child who is worked with minimally - i.e. once a week, will not progress very quickly, and in some cases will not be able to grasp some of the more difficult, but necessary, concepts.'
Purpose of the Exercises
Almost every exercise is accompanied by a very clear a 'wild card' which gives the child the choice. Reproducible game cards, which can be photocopied onto card stock for durability, are supplied in the book and identify topics about which 'WH' questions can be asked and answered - e.g. 'holidays,' 'favorite book explanation of its purpose. This feature helps teachers identify areas of need and decide whether or not a given exercise is targeting an appropriate skill. The exercises also can be useful for probing a child's abilities. It sometimes turns out that a child needs a lot of strengthening in areas that traditional language testing may not have identified as being problematic.
A good example of how this may work is the material on teaching 'WH' questions (i.e. 'who,' 'what,' 'where,' 'why,' 'when,' and including 'how') in the 'Grammar and Syntax' section of the book. While a child may have a basic receptive understanding of these concepts, s/he may not demonstrate real expressive fluency in using them. The TML materials first teach the various 'WH' words in isolation (with lots of scripted examples), then mix them up (again scripted) and finally strengthen their expressive use by means of an innovative board game (described below). As the authors observe in their section on 'Why Teach WH Questions This Way?':
This game is designed to promote the child's use of mixed questions. The game constrains conversation so that the child must use a variety of questions that s/he may otherwise not use. Most children with language delays do not ask many different questions. We hope that the child will learn to ask many different types of questions and generalize the question types from the game to unstructured situations in life. We use a game with topics that are interesting to the child so that practicing questions will not seem as tedious for the child. (page 196)
To play the 'WH Question Game,' the teacher must create a spinner (or borrow one from an existing Board Game - Chutes and Ladders does nicely J ). There are two levels of difficulty, with the 'easy' version focused on 'who,' 'what,' 'where,' and 'when,' questions and the 'difficult' version adding 'how,' 'how many,' 'which,' and,' 'what makes you happy/sad,' 'a computer game,' etc.
Opportunities to Involve Peers
Many of the TML exercises can be turned into enjoyable group learning activities with normally developing peers. A good example of this is the 'Finding Out About Someone' exercises in the 'Social Language' section. The material is first taught by the teacher in a one-on-one context. Then, the child practices with as many different adults as possible. Once the child is getting good at the drill, it's desirable to involve normally developing peers - first one at a time and then gradually in larger groups. In addition to strengthening the child's skills, s/he and the peer(s) get to learn more about each other's likes and dislikes. Further, the child gets good practice in learning to listen to the peers.
Another fun game for peers is the 'Ask Me About' game, which is among the 'Conversation Games' in the 'Social Language' section. A spinner (like the one described above) may stop at any one of the following words: who, what, when, where, how and why. Children draw from a deck of topic cards and then need to ask each other questions about the topic, depending on where the spinner stops. Provided the topics are interesting or funny (obviously the teacher will need to generate topics that will be appealing to the age group s/he is working with), the kids can have a very good time with this.
It usually will be enormously beneficial to involve one or more of a child's normally developing peers in various of the conversation exercises in the 'Social Language' section. One good example is the 'contingent statements' exercises. This drill teaches a child to recognize, and use, the various contingent statement patterns that typically underlie a conversation: e.g. 'comment-comment,' 'answer-comment,' comment-question,' 'question-question,' etc. Once the child has mastered this difficult material in one-on-one sessions with a teacher, the child can practice with peers.
Peers often particularly enjoy participating in the 'Fact or Opinion' exercises. (Who doesn't like to give opinions about hot topics? J ), and the 'Movie Conversation' activity. In addition to providing fluency practice, these exercises teach the child (via scripting) to use certain vernacular kinds of phrases that might otherwise be missing from his or her vocabulary, like: 'In my opinion…,' 'How do you feel about….,' 'Do you think…,' 'Wasn't it cool when…,' 'Remember the part about…,' 'The best part was when…,' etc.
'Conversational Self-Monitoring' is another exercise that can and should be done with peers once it is mastered with the teacher. Using specially designed form, the child learns to record data during a conversation that tracks the extent to which s/he maintains an appropriate balance between questions and comments. At least in the beginning stages, there is likely to be quite a pronounced imbalance, with 'questions' exceeding the more difficult 'comments' to an inappropriate extent.
In the classroom setting, the child can use TML's 'Conversation Record' form to keep track of how often s/he initiates conversations. This is an activity that, at first, probably will need considerable prompting. It also will require very specific goals (the authors suggest that six times per day be the minimum requirement) and an effective reinforcement/motivation system.
Fitting the Child's Learning Style
TML's overall approach shows how complex tasks can be broken down into smaller components for reconstruction as children gain mastery. It demonstrates the effectiveness of pairing visual and verbal information to support complex information processing with increasing levels of independence. Close attention to the strategies in this manual can help users appreciate the learning style of many children on the autism spectrum and to develop successful instructional variations to fit that style.
While TML (as a 'package') has not been tested empirically, its overall protocol is based on behavior change procedures with proven effectiveness for children on the autism spectrum. The logic and detail with which this manual is written leaves one with the impression that the authors truly have 'been there and done that.' We thank them for documenting their work so that others don’t have to re-invent the wheel.
(Mareile Koenig, Ph.D., CCC-SLP, CBA/PA, is an Associate Professor of Communicative Disorders at West Chester University in West Chester, Pennsylvania, and a Certified Behavior Analyst. E.C. is a parent and CT FEAT Board member.)
Editor's Note: A more detailed description of the skills addressed in TML, together with background information about the authors, can be found at the TML web site: http://fox.nstn.ca/~zacktam/index.html. TML costs $59.95. The TML CompanionWorksheets book (optional but very helpful) costs $19.95. Both books can be purchased from Different Roads to Learning, at 1-800-853-1057 or at the company's web site at www.difflearn.com.
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WE'D LIKE TO HEAR FROM YOU!
CT FEAT welcomes feedback from our readers regarding the contents of the CT FEATNewsletter. Are you enjoying the newsletter? How might it be improved? We invite your comments and suggestions. Please send your ideas to the newsletter's editor at CT FEAT, P.O. Box 388, Ellington, CT 06029-0388, or email Beth at info@ctfeat.org. If you'd like us to consider publishing your remarks as a 'letter to the editor,' please include a daytime phone number where you can be reached.
Conferences And Workshops
During the next few months, there will be some wonderful ABA conferences within easy driving distance from Connecticut.
- March 9-10, 2000 (Thursday-Friday), New York, New York, 'Conference 2000: International Conference on Science in Autism Treatment.' Sponsored by the Association for Science in Autism Treatment (ASAT), this conference features many of the country's leading ABA professionals, together with various other distinguished autism professionals. Among the more than 30 presenters: Catherine Maurice, Ph.D. (speaking about ASAT); Bridget Taylor, Psy.D. (on incorporating peers in the treatment of children); James Partington, Ph.D., BCBA (on behavioral language assessment and intervention); Gerald Shook, Ph.D., BCBA (on identifying qualified behavior analysis practitioners); Gina Green, Ph.D., BCBA (on brain plasticity); James Mulick, Ph.D. and John Jacobson, Ph.D., BCBA (on cost-benefit analysis of behavioral and fad treatments); Deborah Fein, Ph.D. (on early identification); and Marie Bristol-Power, Ph.D. (on autism funding and research in the new millennium). The conference costs $225.00 for both days. There also will be two separately priced, post-conference workshopson Saturday, March 11. One workshop concerns legal issues and the other describes the nuts and bolts of setting up a site-based ABA program. Session One is 'Effective Advocacy: Protecting the Rights of Individuals With Autism' presented by attorneys Charles Jelley, Richard O'Meara, and Jay Eisenhofter. It will be held from 9:00 a.m. to 12:30 p.m. Session Two is 'How to Establish a Behaviorally Based Education Program for Individuals With Autism' presented by Suzanne Letso (Executive Director) and other staff from the Connecticut Center for Child Development (CCCD), together with a CPA and a development consultant. The price for the Saturday workshops is $75.00 for both sessions, or $50.00 for each individual session. For further information, contact ASAT at: South Hills Medical Building, Suite 201, 575 Coal Valley Road, Jefferson Hills, Pennsylvania 15025; (516) 466-4400; E-mail ASAT@autism-treatment.org
- April 5-7, 2000 (Wednesday-Friday), Wilkes-Barre, Pennsylvania, 'Autism 2000 Conference.' Sponsored by Human Services Consultants Management, Inc., this conference features an extraordinary lineup of some of the 'hottest' speakers in the ABA world, including Mark L. Sundberg, Ph.D. and James W. Partington, Ph.D., authors of the influential book Teaching Language to Children with Autism and Related Disabilities. They will be presenting together in a special separately-priced workshop on their innovative assessment and intervention strategies for teaching language skills. Other outstanding presenters include: Vincent J. Carbone, Ed.D. (renowned for his popular lectures based on Sundberg and Partington's work, but who here will be talking about 'How to Teach Instructional Cooperation to Young Children With Autism'); Mary Jane Weiss, Ph.D. ('Developing Play Skills in Children with Autism' ); Sandra Harris, Ph.D., ('Siblings Talk About Autism'); Len Levin, Ph.D., ('Integrating Children With Autism: Strategies for Regular Education Teachers and Supported Inclusion Personnel'); Edward Fenske, M.A.T., Ed.S. ('Some Not-Discrete-Trial Behavioral Teaching Procedures'); John Jacobson, Ph.D. (providing a cost/benefit analysis of early intensive intervention); Stein Lund and John Barnard ('Anatomy of a Successful Intervention Program for Young Children With Autism'); Raymond Romanczyk, Ph.D. ('Assessment and Intervention for 'Difficult to Teach' Children'); Anthony Castrogiovanni, Ph.D. and Lori Frost, M.S., CCC-SLP (on the Picture Exchange Communication System -PECS); Andrew Bondy, Ph.D. (an overview of 'the Pyramid Approach to Education'). There also will be presentations on neurological and biological issues, and a legal panel on legal rights and services for people with autism. This conference costs $350.00 for all three days or $150.00 for a single day. The Sundberg/Partington workshop, which runs an entire day, is separately priced at $125.00. You can obtain more information, including on-line registration, at the conference's web site: www.hscm.com, or call (570) 714-2350.
- April 30, 2000 (Sunday), Sturbridge, Massachusetts, 'Teaching Language to Children With Autism With Dr. Vincent Carbone.' During the past year or so, there has been a great deal of interest in the work of behavior analysts Mark Sundberg and James Partington, who have developed some innovative assessment and intervention strategies for teaching language. Workshops by Vincent Carbone, Ed.D., CBA, have helped to popularize for a larger audience this somewhat technical material. This is an intensive one-day workshop that will describe how to use behavior analysis to classify language and assess a child's repertoire across the important classes of verbal behavior. The Carbone workshop follows, and is part of, a larger conference, 'Autism Update: A Game Plan for the Future,' sponsored by the Flutie Foundation and Children Making Strides. The full conference, which takes place April 28-29, 2000 (Friday-Saturday), is not focused on ABA treatment (though Dr. Carbone will present one short workshop on discrete trial training programs during it) but rather on biological issues and other kinds of treatment interventions. There also is another day-long, separately-priced pre-conference workshop by Pamela J. Wolfberg, Ph.D. on 'Integrated Play Groups' which may prove interesting. Wolfberg is the author of Play and Imagination inChildren With Autism (1999) and reputedly has done some very worthwhile work on involving normally developing peers in teaching play skills to children with autism. The conference costs $150.00 for both days or $100.00 for one day. The separate workshops by Carbone and Wolfberg cost $100.00 each, discounted to $50.00 for those who attend the two-day conference. Further information regarding this conference, including registration forms, can be found online at www.childrenmakingstrides.com or by calling (508) 759-6754.
- Save the Date: May 12-13, 2000 (Friday-Saturday), Atlantic City, New Jersey, 'COSAC's 18th Annual Conference.' The annual conferences put on by the New Jersey Center for Outreach and Services to the Autism Community (COSAC) enjoy a well-deserved reputation for excellence. Once details about the conference become available, they will be posted at the CT FEAT web site along with other updated conference information. You can reach COSAC directly at (609) 883-8100. Another good source for conference information in our region is the web site maintained by the New York Autism Network: www.albany.edu/psy/autism/autism.html.
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The Great Video Debate:
Should They or Shouldn't They?
(by Lynette Rorer)
I have been involved with autism for almost five years now, and every now and then the topic comes up of videos -- is it OK for our kids to watch them? They sure do love them! Or, should we eliminate them completely -- the cold turkey route -- in order to get the dreaded 'silly talk' under control?
Some people believe that the echolalia that so often develops after our kids become verbal, and frequently contains scripting from videos, is a welcome and necessary step in the development of functional speech. Some say that their kids began to communicate by taking snippets of 'video talk' and inserting them appropriately into conversations. Eventually, they say, their kids were able to speak quite well, although still doing a lot of scripting just for fun!
Being the parent of a child who earned the crown for 'Silly Talk Queen' in both 1996 and 1997, I'd like to share my thoughts on this issue. Reagan was an avid video viewer already at the age of nine months -- she would stand in front of the television, clutching the TV table for support and remain mesmerized for an entire 60 minute video. Thinking back, why we allowed this is totally beyond me, and figures somewhere into the denial equation. For some reason, we thought it required intelligence to be mesmerized by a video at nine months!
As she approached two, we were becoming concerned. When she started to imitate the characters' actions while watching herself in the mirror (and TOTALLY ignoring everyone and everything else), it really started to sink in. Shortly thereafter, we received the diagnosis. At this point, Reagan had limited verbal ability, but over the next six months, the 'silly talk' came in and once it started, there was NO stopping it!
We tried a lot of things to eliminate the 'silly talk'. We, of course, started out with the acclaimed 'NO SILLY TALK' approach. It failed miserably. Reagan just ignored us -- what else was new? We tried entering into her monologue, ha! At times it was almost impossible to do therapy because Reagan could retreat so deeply into herself while engaging in this mammoth stim. And, she kept up her perseveration on the characters' actions as well.
The last straw was when we were driving in the car and I turned around excitedly thinking she had called me for the first time. I quickly recognized the line as coming from her favorite movie, the Aristocats, 'Mama, I'm frightened, I want to go home!' And, I could see by Reagan's vacant look that she was no closer to calling me Mama than she'd been a year ago.
It was at this time that not only did the Aristocats video go in the trash, but I finally worked up the resolve to take her cold turkey off her video fix. It turned out it wasn't really that hard, and I found that in the time that she would have been watching videos, we were actually getting some good work done. The effect wasn't immediate -- those video lines stay locked in their little heads for some time after the last actual viewing. But eventually it decreased, and in its place was more appropriate speech and more reinforcement for her, which resulted in still more appropriate speech. It was like getting the cobwebs out of her head so she could tune in. And, with the increase in language came a little more social involvement. This process has been continuing ever since.
We fought perseverative play alongside of the verbal stims.
We had to watch very closely when she played alone because many times her seemingly 'great' play was actually a re-enactment of some video scene. This can be very difficult to spot, and I imagine a lot of kids get good marks at their psychological evaluations due to perseverative video play. We eventually triumphed over this too, and today Reagan is allowed to watch videos, though she rarely has the time. She's busy with soccer, swim team, brownies and a host of other little girl activities.
But, we recently banned another auditory delight -- the car radio. I just got tired of both my kids sitting zombie faced in the car reacting only to the music and never offering any conversation. I told Reagan, 'People like to talk to each other in the car; when you listen to the radio, you zone out.' I asked her, 'Is that good or bad?' 'Bad,' she replied. 'That's right, people will think you don't like them if you don't talk to them.'
The immediate result of this was a barrage in the form of a long rambling report on the first grade's field trip to Mrs. Baird's Bakery, directed at my husband who was trying to carry on a conversation with a merchant. When we got back in the car, Reagan beamed -- 'Now can we turn Radio Disney back on?' Amused by this as we were, we stuck to our guns. The radio is still not back on and the conversation is flowing! Sometimes I'm tempted to turn it on just to get some peace! But rarely, because the sound of Reagan's voice is so sweet and I'm still blown over by just about everything she says, no matter how annoying!
In closing, I would like to add that there is a place for video viewing in the therapy world. I have read some interesting posts on the Me List [an Internet discussion list for parents and professionals who are doing ABA programs - see CT FEAT web site for more information] about video modeling for social and play skills. I have heard of people stopping the action on a video to ask WH questions. I wish we would have thought of that! And, a bit of video viewing as an over-the-top reinforcer is probably OK. But, overall, I believe what our kids need is to be drawn out in whatever way we can find to do it. Video viewing requires NO interaction, it is repetitive and addictive. If you've ever sat in front of your computer screen for endless hours, you may be able to relate. There are times when I literally CANNOT get up and go to bed! Our kids need our help to pull them away from the television and into our world. They can't do it on their own.
(Lynette Rorer is a parent who wrote this article for the December/January edition of the FEAT North Texas (FEAT-NT) newsletter. An edited version of the original article is reprinted here with permission. You can read the full text of this article, as well as other interesting parent-authored articles, at the FEAT North Texas web site: http://home.flash.net/~sjapollo/featnt.htm.)
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CCCD HOLDS SPRING FUNDRAISER:
'CELEBRATING OUR ACHIEVEMENTS'
The Connecticut Center for Child Development (CCCD), a private school which uses instructional methods based on the principles of Applied Behavior Analysis (ABA), will be holding its spring fundraiser on Saturday, April 29, 2000, from 6:30 to 9:30 p.m.at the Milford Yacht Club.
The 'Celebrating Our Achievements' event marks CCCD’s first anniversary at its new location on 925 Bridgeport Avenue in Milford, Connecticut. Before the fundraiser begins, from 5:00 to 6:15 p.m., there will be tours of the school’s new facility.
The fundraiser will feature a cocktail reception, silent and called auctions, and musical entertainment. The cost is $50.00 per person. CCCD’s annual fundraisers have a reputation for being a lot of fun. And the cause is certainly a worthy one. For more information, call CCCD at: 203-882-8810 or E-mail to: CCCDINC@aol.com.
CREC River Street Autism Program - 2000 Lecture Series
The lectures will be held in the River Street School from 7:00 to 9:00 p.m. If the school is closed, or dismissed early due to bad weather, the lecture will not take place.
There is no charge for parents of children with autism. Cost for professionals is $15.00 in advance, $20.00 at the door. For more information, call Susan Hayes at (860) 298-9079.
Tuesday, March 14th - 7:00-9:00 p.m. 'Socialization for Friends and Family Members'
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.
Tuesday, May 13th - 7:00-9:00 p.m. 'Surviving the Summer: Tips for Leisure Activities'
Presented by: Rebecca Ludlow, B.A.
Tuesday, March 14th - 7:00-9:00 p.m. 'Socialization for Friends and Family Members'
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.
Tuesday, May 13th - 7:00-9:00 p.m. 'Surviving the Summer: Tips for Leisure Activities'
Presented by: Rebecca Ludlow, B.A.
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New York Department Of Health Autism Guideline
Now Available Online
The New York State Department of Health (DOH) Clinical Practice Guideline: Autism/Pervasive Developmental Disorders, released in 1999, is now available online in its Quick Reference Guide version at www.health.state.ny.us/nysdoh/eip/menu.htm.
The guidelines were developed by an independent, multi-disciplinary panel of topic experts, clinicians, educators, and parents. The DOH panel used the same methodology and guideline format that has been used in recent years by the Agency for Health Care Policy and Research, a part of the Unites States Public Health Services.
Parents here in Connecticut should find these guidelines much more useful than the Report of the Connecticut Task Force on Issues for the Education of Children with Autism. The task force producing the Connecticut report did not follow any scientific protocol and based its recommendations largely on anecdotal evidence.
The New York guidelines recommend 'that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention programs for young children with autism.' The guidelines further recommend that 'intensive behavioral intervention include a minimum of approximately 20 hours per week of individualized behavioral intervention using ABA techniques (not including time spent by parents) (Quick Reference Guide, page 33, emphasis in original).'
The guidelines considered a voluminous amount of scientific research and assessed the evidence supporting a variety of interventions, including the 'Developmental, Individual Difference, Relationship model (DIR - also known as 'Floor Time' and associated with Dr. Stanley Greenspan), and Sensory Integration therapy (SI). The report concluded that 'no adequate evidence has been found that supports the effectiveness' of these methods for treating autism (Quick Reference Guide, pages 39-40).
After evaluating the available research regarding Auditory Integration Training (AIT) and Facilitated Communication, the report concluded that these interventions were 'not effective' and recommended that they 'not be used as an intervention method for young children with autism (Quick Reference Guide, pages 42-43).'
The guidelines are available in three different versions: Guideline Technical Report (434 pages); Report of the Recommendations (322); and Quick Reference Guide (108 pages). For further information regarding this report, the full title of which is Clinical Practice Guideline: Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (ages 0-3 Years), contact the New York State Department of Health, Early Intervention Program, Corning Tower Building, Room 208, Albany, New York, 12237-0618; 528-473-7016.https://torrent-casino.mystrikingly.com/blog/forest-car-simulator-pro-2018-mac-os.
BIRTH TO THREE SPONSORS ABA GRADUATE COURSES
Connecticut’s Birth to Three System, in conjunction with Penn State University in State College, Pennsylvania, is sponsoring a series of four graduate courses in Applied Behavior Analysis (ABA) for early interventionists and educators. 'Distance learning' technologies utilizing satellite hookups make it possible for instructors in Pennsylvania to teach students in Connecticut.
Approximately 25 students are enrolled in the program, which is being coordinated by Deb Resnick in the Hartford office of the Birth to Three System.
Three out of four of the courses consist of two all-day classroom sessions, which are held on Saturdays in the Hartford area. The remaining course consists of attending the week-long 'Summer Autism Institute' at Penn State University.
The first course, 'Basic Principles I,' started on January 29, 2000. The second one, 'Basic Principles II,' will be held this upcoming spring, followed by the 'Summer Autism Institute' in August of 2000. The series concludes with a fourth course on 'Extended Applications of Applied Behavior Analysis' beginning in the fall of 2000.
Tuition to Penn State is approximately $400.00 per credit, amounting to $1200.00 per 3-credit course. Students also will have to cover travel, food and lodging costs for the week that they are in Pennsylvania attending the summer institute.
These four required courses will make otherwise qualified individuals eligible to take the national certification exams to become a Board Certified Behavior Analyst (BCBA) or a Board Certified Associate Behavior Analyst (BCABA).
In order to sit for these exams, one must also have a specified amount of 'supervised' or 'mentored' clinical experience. In addition, BCBA candidates must have a Master’s Degree and BCABA candidates must have a Bachelor’s Degree.
For more information about the certification process, you can visit the National Behavior Analyst Certification Board's web site at www.bacb.com. For more information about the Penn State University program, visit www.outreach.psu.edu/Statewideprograms/ABA, or call Ed Donovan, the Penn State program coordinator, at (412) 242-3054.
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EDITORIAL:
CONNECTICUT NEEDS NEW AUTISM TASK FORCE
In 1993, the Connecticut Department of Education convened a task force of professionals and parents to prepare a report on 'best practices' for educating children with autism spectrum disorders (ASD). The resulting Report of the Connecticut TaskForce on Issues for the Education of Children With Autism (hereafter referred to as the 'Report') was published in April of 1996 and then reissued, with an expanded list of resources and additional appendices, in 1998.
Though the effort was motivated by the best of intentions, the resulting product failed to identify which interventions are scientifically validated as effective in helping children with autism.
Unlike the recent task force efforts in Maine and New York (discussed elsewhere in this issue), the Connecticut task force did not adhere to any recognized scientific standard in assessing the evidence. As a result, many of its treatment recommendations are either unsupported by reliable evidence or outdated.
In many respects, the Report has made a positive contribution to establishing a more enlightened educational environment for children with autism. Especially valuable is its description of the essential components of an appropriate educational program. These are: 1) earliest intervention; 2) parent involvement; 3) a focus on social interaction and communication; 4) intensive programming; 5) direct teaching within a structured setting; 6) programming for generalization; 7) specifically trained personnel; 8) planned integration with typical peers (pages 41-52).
Some of the Report’s other findings also helped to change many of the inappropriate educational practices prevailing at the time the Report was issued. For example, the Report’s recognition of the necessity for intensive, year-round services convinced many school systems to increase the intensity and duration of the services they were providing to children (page 44).
The Report’s finding that an appropriate educational plan needs to provide for the direct instruction of play and social skills also represented an important step forward. As the Report states, 'a much more deliberate focus on social behavior must be built into any effective education program (page 39).' And '..it is essential that ‘free play’ time be utilized as an opportunity for educators to teach play interactions.. with peers, rather than leave such interactions to chance. Without such assistance, free play is often nonproductive at best, or used as a time for self-stimulatory behavior, at worst' (page 43).
Despite these achievements, the Report is very disappointing in the realm of specific recommendations about interventions. Unlike the task force reports issued in New York and Maine during this past year, the Connecticut Report recommends interventions and practices which are not supported by scientific research.
The Report identifies 'two major approaches' to teaching students with autism: Applied Behavior Analysis (ABA) and 'Developmental/Social Pragmatic' (DSP). The report claims that 'both approaches are based on research,' but provides no citations to substantiate that assertion.
Though the Report makes no mention of it, there is significant research supporting the effectiveness of ABA1. In contrast, there is no peer-reviewed outcome study supporting the effectiveness of the DSP model. According to the Report’s own guidelines for the 'evaluation of new interventions': 'The best studies of treatment effects are those which employ some forms of control or comparison group to enable researchers to identify which effects are likely to really result from the treatment' (page 61). Evidently, 'old interventions' like the DSP approach aren’t held to the same standard as 'new' ones.
Because there are no controlled studies documenting the DSP model's effectiveness, the New York and Maine task force reports (which scrupulously adhere to scientific evidentiary standards) don't even mention it in their review of treatment models.
By contrast, the Connecticut Report clearly favors the DSP approach. Most of its recommendations and 'teaching tips,' including the material on 'Characteristics of Speech, Language and Communication' (Chapter VIII) and almost all of the instructionally related appendices (Appendices E, F, and J), reflect that bias.
When the Report was reissued in 1998, this imbalance became even more apparent. One of the only changes was to add yet another appendix (Appendix F) supporting the DSP approach. This document, by Barry Prizant, Ph.D. (considered the primary developer of the DSP model), purports to describe the differences between the DSP approach and what he calls 'traditional behaviorism.' Not too surprisingly, it is hardly an impartial portrait of the two approaches.
The Report also makes the claim that an 'eclectic approach to educational programming,' involving 'selecting techniques from different approaches' is desirable (page 45). However, there is no scientific evidence that mixing various approaches is appropriate. Further, there is no documentation indicating that any children have achieved a 'normal' level of functioning using an 'eclectic' approach.
Perhaps the most glaring evidence of the Report’s disregard for scientific standards is its recommendation that children with autism be taught to read using the 'Whole Language' approach (Appendix I, page 80). We are aware of no scientific evidence supporting the effectiveness of this largely discredited approach for teaching reading to any children, including those with autism.
The task force’s assumption that autism spectrum disorders are always permanently disabling2 is also contradicted by the research. With appropriate intervention, many children can and do prove capable of attaining a normal level of functioning, as documented in the Lovaas ABA study described in footnote one.
DSP practitioners cannot, and do not, make the claim that their intervention model can produce normal levels of functioning. For the adherents to this approach, indeed, the supposed 'permanency' of autism is almost an article of faith.
Recommended Guidelines for New Task Force:
New York and Maine have demonstrated that it is possible to undertake a neutral and unbiased analysis of the existing scientific research regarding autism intervention. The New York task force used the same methodology and guideline formats that have been used in recent years by the Agency for Health Care Policy and Research (AHCPR), a part of the United States Public Health Service. This methodology was selected because it is an 'effective, scientific, and well-tested approach to guideline development.' Connecticut should adopt the same high scientific standards.
It is also essential that participants in the next task force have no financial interest in promoting one intervention approach over another. The current Report’s inclusion of an Appendix authored by one of the task force members, and explicitly identifying her private consulting business, creates at least the appearance of impropriety. Unfortunately, this serves to undermine one’s confidence in the entire process which produced the Report.
A new task force also should include some parents whose children have received early and intensive behavioral intervention programs. The presence of parents with direct experience of this treatment approach no doubt would eliminate some of the mischaracterizations of ABA therapy that appear in the current Report.
The parents and professionals who worked on the existing Report deserve our respect and gratitude for their efforts. Given the dramatic improvements in our knowledge about autism and its treatment during the past decade, it is not surprising that the Report should have become so quickly outdated.
Despite the hard work and good intentions that produced the 1996 Report, it should not be reissued again, as it was in 1998. As the Report itself recognizes, children with autism spectrum disorders need the best possible intervention at the earliest possible opportunity if they are to achieve their potential.
These considerations make the convening of a new task force, and the production of a document that is scientifically based, an urgent matter. Our children’s futures depend upon it. And they deserve no less.
EDITOR, CT FEAT Newsletter
________________________________________________________________________________________________________
The two most influential articles on this subject matter are not even cited in the Report: 'Behavioral treatment and normal educational and intellectual functioning in young autistic children,' Journal of Consulting and Clinical Psychology, 55, 3-9, Lovaas ( 1987); and 'Long term outcome for children with autism who received early intensive behavioral treatment,' American Journal on Mental Retardation, 4, 359-372, McEachin, Smith, & Lovaas (1993). The first article summarizes Lovaas' groundbreaking study in which 9 out of 19 children receiving intensive behavioral intervention achieved normal functioning. The second article is a follow up study of those same nine children six years later.
2This is illustrated by the descriptions of autism as a 'lifelong disorder' on page four and as a 'lifelong disability' on page 14.
________________________________________________________________________________________________________
Coalition Promotes Services for Adults
Within the broad diagnostic category of Pervasive Developmental Disorders (PDD), there exist various discrete diagnoses (e.g. autistic disorder, PDD Not-Otherwise-Specified, and Asperger’s Disorder). Among -- and even within -- these separate diagnostic subcategories, the severity of impairment varies greatly.
Most individuals with these 'autism spectrum disorders' (ASD) do not have classically defined 'mental retardation.' But, to varying extents, and due in part to a lack of information about effective interventions when they were children, most of them remain disabled throughout their lives - e.g. unable to hold a job, use public transportation, drive a car, or otherwise enjoy an independent life. Instead, they must rely on their families for support.
As things currently stand in Connecticut, there are no appropriate services for individuals with ASD beyond the age of eighteen, unless they have a dual diagnosis of autism and mental retardation or some other severe mental health problem. Lois Rosenwald and Maggie Casciato, parents of grown children with mild autism (i.e. without classic mental retardation), have formed a 'Legislative Action Coalition for Autism Spectrum Disorders' seeking improved services for this population.
Rosenwald (president of the Greater New Haven PDD/Asperger Support Network) and Casciato (president of the Atypical PDD/Asperger Support Group in Fairfield county) advocate the establishment of a Department or Division of Developmental Disabilities within the Department of Mental Retardation which would service all those on the autism spectrum. This department would provide vocational assessment and training, independent living supports, job coaching, social skill training, and other related social and educational supports.
The Legislative Action Coalition is circulating a 'Petition for Services for Individuals With Autism and Related Pervasive Developmental Disorders' which will be sent to Connecticut legislators. The Coalition also is urging parents to write their legislators supporting legislative action on this issue. For further information about the effort to secure these very needed services, contact the Coalition at 27 Broadview Road, Cheshire, Connecticut, 06410 or call (203) 272-7529.
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IN THIS ISSUE: CT FEAT Newsletter, Vol.3, No. 1, Winter 2000
Note: The content of this newsletter is, unless otherwise indicated, the property of Connecticut Families for Effective Autism Treatment, Inc. (CT FEAT) and is copyright protected. It may be used only with attribution. Copyright © 2000, CT FEAT, Inc.
Autism Task Force:
ABA Is Only Scientifically Validated Treatment
(Sue Frost Bennett)
Like most other states in recent years, Maine has experienced an increased number of legal cases concerned with the appropriateness of educational services provided to children with autism. In an effort to improve services, and reduce litigation, a professional association of special education administrators formed a task force in 1997 to develop 'best practice' guidelines based on scientific evidence.
The Maine Administrators of Services for Children with Disabilities (MADSEC) Autism Task Force was comprised of a diverse group of knowledgeable people, including special education directors, teachers, psychologists and parents. Their common task was to 'learn about different interventions, and to uncover the science that would substantiate, or fail to substantiate, the effectiveness of the intervention' (page 2).
The 1999 report that resulted from these deliberations has recently become available. The Report of the MADSEC Autism Task Force (hereafter referred to as the Report) found that only one intervention was 'substantiated as effective based upon the scope and quality of research': applied behavior analysis (ABA) (page 6).
ABA : Intensive Individualized Instruction Delivered by Specially Trained Staff
The Report recognizes that an effective ABA intervention program requires many hours of intensive, individual instruction. 'Intensive' means one-to-one treatment in which carefully planned learning opportunities are provided and reinforced at a high rate by trained therapists and teachers for at least 30 (preferably 40) hours a week, 7 days a week, for at least two years' (emphasis in original, quoting a 1995 article by Gina Green, Ph.D.). The Report references controlled studies in which 'young autistic children who received less intensive treatment made some modest gains, but normal or near-normal functioning was achieved reliably only when treatment was provided for 30-40 hours a week, on average, for at least two years' (page 27).
The Report further notes that practitioners of ABA 'require specialized training in addition to that normally gained by professionals specializing in behavior impairment, special education, child development or psychology' (page 7).
The Report also recommends using ABA 's systematic evaluative procedures to assess the 'efficacy of any intervention intended to affect individual learning and behavior.' The Report further pointed out that, 'ABA's emphasis on functional assessment and positive behavioral support will help meet the heightened standards of IDEA '97. Its emphasis on measurable goals and reliable data collection will substantiate the child's progress in the event of due process' (page 6, emphasis in the original).
The Report notes that 'detractors theorize [that] behavioral programs produce robotic children.' But the research reviewed by MADSEC revealed nothing to substantiate this theory. 'On the contrary, one of the more consistent findings of the research is improved social skills in those children treated.' And, 'to date, there are no published studies which refute the effectiveness of this approach' (page 29).
While some other interventions may 'show promise,' they are 'not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science.' These include: 'Auditory Integration Training (AIT),' 'the Miller Method,' 'Sensory Integration,' and 'Treatment and Education of Autistic and Communication Handicapped Children (TEACCH)' (page 6). The Report advises professionals considering AIT, the Miller Method, or SI to disclose their status as 'experimental' treatments to the 'key decision-makers influencing the child's intervention ' (pages 36, 49, 53).
Sensory Integration
In assessing Sensory Integration (SI), the task force found that the limited research to date has been unable 'to identify SI as an independent variable responsible for positive change in a child's behaviors or skills. In at least one study, SI was shown to actually increase self-injurious behaviors'; however, 'it may offer enjoyable, healthy physical activity' (page 52).
The Report recommends that 'professionals considering SI should distinguish the intervention from other methods that may be employed by occupational and physical therapists to achieve fine motor, gross motor and adaptive daily living goals' (page 53).
Division TEACCH
Although over 250 research studies have been conducted by or in collaboration with Division TEACCH since 1965, few have been 'peer-reviewed studies of outcome replications conducted by researchers not affiliated with TEACCH.' The Report concludes that 'professionals considering TEACCH methods should portray the program as lacking independent verification of its effectiveness, and should disclose this status to key decision makers influencing the child's intervention' (page 60).
No Scientific Evaluation of Any Kind: Son Rise and Floor Time
According to the Report, interventions that are 'without scientific evaluation of any kind' include the Son-Rise program and Stanley Greenspan's Developmental, Individual Difference, Relationship (DIR) model (more commonly known as 'Floor Time') (page 7). There have been no peer-reviewed, published studies substantiating the effectiveness of either of these treatment models.
I dont know what to call it mac os. 'Pending rigorous further investigation of [DIR/Floor Time's] effectiveness in autism remediation and outcome statistics, professionals considering [the model] should give strong consideration to the potential harm' that may be imposed on children and their families by the model's implication that autism may be the result of poor parenting (page 46).
Conclusion
The Report emphasizes the importance of early, intensive, scientifically validated intervention for children with autism. Children who receive such intervention have substantially more positive outcomes than those who do not, who usually will require special or custodial care throughout their lives. The cost of such lifetime care is estimated at $13 billion a year - far exceeding the cost of providing timely, effective treatment (page 6).
(To receive a copy of the Report of the MADSEC Autism Task Force, make out a check to MADSEC for $20 and mail it to: MADSEC, 675 Western Avenue Suite 2, Manchester, ME 04351. For more information, call (207) 626-3380).
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Autism Academy:
Multi-Media Comes to ABA
(J. Tyler Fovel, M.A.)
Successful educational programs for individuals with autism depend on the careful and systematic application of Applied Behavior Analysis (ABA) teaching technology. This applies not just to students, but also to the teachers who will be instructing them.
Eden II, which has provided center-based ABA services at its 'Genesis School' in New York since 1995, has produced a new computer software program that can greatly enhance the training of teachers. Autism Academy Courseware, Volume One - Behavioral Programming for Children With Autism provides an excellent introduction to ABA-based teaching principles, including such topics as: reinforcement, prompting, discrete-trial teaching, data collection, classroom organization, and curricula.
Of course, a computer program cannot substitute for the supervision of an experienced consultant and live-demonstration feedback. But Autism Academy helps meet the tremendous need for solid ABA training materials that go beyond what can be presented in written descriptions.
The program is taught in a virtual 'classroom.' Topics are presented first in lecture format, followed by lessons, which present selected information and questions. During the lessons, feedback is given for both correct and incorrect user responses.
I thought that the lessons were much more effectively presented than the lectures. In the lectures, there are insufficient opportunities to respond to the large quantity of material being presented. Consequently, some important material may be too easily ignored. Since the user does not control the quick pace of the lecture, much material can go by without even the simple response of turning a page or advancing a screen. This is a serious flaw.
By contrast, the lessons present a fewer number of important concepts and give the user plenty of opportunity to respond. It’s here that the CD shines and merits real praise. Using plenty of video, multiple-choice questions, and even real-time data taking, the user interacts with the material often. The video example of fading physical prompts, impossible to adequately convey in words, is excellent. There are numerous demonstrations of correct and incorrect techniques for reinforcing, pacing the teaching trials, and even a video tour of an ABA classroom.
Even in the lessons, however, the material can be sometimes frustratingly complex for a person new to behavior analysis. For example, there is a section on identifying mistakes of programming, where a seven-item list is introduced but where the last three items (the most complex) are not extensively reviewed.
Occasionally, I did not agree with the wording of a concept or the use of a term. For example, I think that the discussion on 'differential reinforcement' focuses on the wrong aspect of the word differential. I am more used to hearing the word refer to reinforcing one behavior and not another (as in Differential Reinforcement of Other behaviors or 'DRO') rather than referring to the differing reinforcing value of various stimuli. For these reasons, it will be necessary to discuss the CD with trainees and make sure that their understanding of the terminology is consistent with the terminology used in their ABA program.
The material presented in Autism Academy is standard and vital for all teachers to understand. The script is written in a somewhat technical manner—at times unnecessarily technical--and the narration is not as fluid or as interestingly inflected as we have come to expect in this world of video games and professionally narrated TV specials. But the information is there, even if you might have to listen twice. The text of each lecture is included in the Forms section.
The overall visual quality is not exactly 'state of the art.' For example, the 3-D textures are a little surreal looking and the classroom teacher moves and speaks in awkward, jerky motions. But on the whole, the graphics (both animated and static) are well placed and embellish the narration. Occasionally, video is also used to make a point.
For the most part, interaction and movement in the program is well thought out. The main topics are arrayed at the bottom of the screen with video-style controls placed at the right to advance, back up, and stop. A control panel called a remote is placed at the left, which allows a selection among lectures, lessons, a glossary of behavior analytical terms, and printable forms. Little messages fade in an out occasionally to help the novice user navigate.
There are some annoying glitches in the program. One example is the omission of a return control when one wants to interrupt a lecture or lesson and move to the glossary. In order to return to my original place in the lecture, I had to restart the entire section and then skip ahead. And the glossary, itself, scrolls extremely slowly. Also, the printing function had some serious problems. For example, in order to print a single page, one must individually cancel all pages that should not be printed within the item (most of which are multi-paged). My advice to the programmers: get a different and easier to use printing module.
Don’t get me wrong--the interface gets the job done. The video ran extremely well, which is not an easy thing to accomplish. And, I loved grabbing and putting the furniture and programming objects in their proper places for a teaching session in the last section.
There may be imperfections here and there but this is a commendable initial version. Perhaps the authors could observe actual users interacting with the material in order to make revisions. In addition, the capacity to keep track of user scores might be helpful. Make no mistake--this CD is on the right track.
Those contemplating purchase should be aware that this is a basic training in elementary ABA terms and concepts. Additional reading, discussion, observation, and supervised hands-on experience certainly will be necessary in order to deliver a professional quality ABA program.
With quality professional input to ABA programs at a premium, basic instruction should be accomplished before the consultation, not during it. At $149.95, the cost for this program may be rather high. But it's probably worth the money when compared to the cost of a consultant doing the same 3-hour training separately for each new teacher or therapist. (Note that schools are required to buy a '3-pack' at $399.00.)
(J. Tyler Fovel, M.A., is the Senior Consultant for the LEARN ABA program in East Lyme, Connecticut)
Autism Academy Courseware, Volume One - Behavioral Programming for Children With Autism (1999) is a multi-media CD-ROM produced by Digital Vista for Eden II Programs, which wrote the curriculum. The program can be used with PC (WIN 95, 98, NT) and MAC (OS 8.0 and higher) computers. It costs $149.00 for individuals. Schools must purchase a 3-pack, at a price of $399.00. The program is available from Different Roads to Learning, (800) 853-1057; http://www.difflearn.com.
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Connecticut Center For Child Development
Offers Lecture Series
The Connecticut Center for Child Development (CCCD), a private school which uses instructional methods based on the principles of Applied Behavior Analysis (ABA), continues its excellent lecture series on Educating Children With Autism and Related Disabilities.
The lectures are available to interested individuals on a first-come, first-serve basis and will take place at CCCD’s facility in Milford, Connecticut. Seating is limited and early reservations are recommended. Call Beth Thompson to make a reservation at (203) 882-8810. Due to space limitations, please be sure to notify CCCD of cancellations as early as possible. The topics and dates of the lectures are as follows:
March 15, 2000, 7:00 p.m.
Lecture #6: Helping Children Learn to Follow Instructions
It is essential for children to be able to follow instructions from a variety of people, and in a variety of situations. Parents and other caregivers often find that children with autism do not consistently follow instructions. Specific strategies for teaching children to follow instructions consistently will be discussed.
Presented by: Patricia Fitzsimmons, M.S.
April 12, 2000, 7:00 p.m.
Lecture #7: The ABCs of IEPs and PPTs - It’s Not an Alphabet Soup
Understanding the basic terms and procedures, including parental rights, involved in special education is critical to ensuring effective advocacy for your child with special needs. Join us for this workshop to strengthen your effective participation in the special education process.
Presented by: Jan Calbro, M.S., and Denise Foster
May 10, 2000, 7:00 p.m.
Lecture #8: 'Show Me the Data': What Interventions Are Supported by Science?
A review of the literature evaluating interventions for children with autism and related disorders will be discussed. Clinical practice guidelines, published by the New York State Department of Health Early Intervention Program, will be reviewed. Guidelines for the evaluation of interventions, including ABA programs, will be discussed.
Presented by: Jodi Mazaleski, M.S., and Suzanne Letso
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Been To The Dentist Lately?
(Sue Frost Bennett)
As we all know, many 'normal' adults avoid going to the dentist. So imagine how much more difficult it is for young children with autism spectrum disorders (ASD)!
Not surprisingly, many parents of ASD children dread, and put off, that first visit to the dentist. Perhaps they fear that the child will misbehave. Or maybe they worry that others in the waiting room will think that they are horrible parents. Parents often have good reason to anticipate that their child simply will not tolerate the examination.
At a talk on February 9th, sponsored by CT FEAT, Barnet B. Baron, D.M.D., described some of the behavioral techniques he has used to desensitize children to dental visits. Dr. Baron may be uniquely qualified to lecture on this topic: he is both a very experienced pediatric dentist and the parent of an ASD son. And he's a wonderful, entertaining speaker to boot!
When To Start Going To The Dentist?
According to Dr. Baron, the earlier the child comes in for the first dental visit, the more likely it is that the dental procedures will be less invasive - thereby making the child's first experience there a positive one. The American Academy of Pediatric Dentistry recommends that children visit as early as one-year-old, especially if the parents are new to parenting.
There are other reasons to start early as well. The care of baby teeth is important. Children keep all their back baby teeth until they are about 12 years old. While only a small percentage of young children develop serious problems, like cysts and tumors, it is important to find such things early. Also, if a child has an accident and needs an emergency dental procedure, it will be a whole lot easier if the child is already familiar and comfortable with the dentist.
The First Visits: One Step At A Time
Dr. Baron advises parents to call the dentist ahead of time and let him or her know that their child has special needs. The dentist may want to meet with the parents, without the child, to learn more about the situation and to put together a plan of action. Good communication between the parents, dentist, and dental hygienist is crucial! Parents may also want to investigate whether their insurance companies cover behavior modification visits.
Dr. Baron prefers to set up a behavior modification plan that provides consistency, repetition, and calm. The child always goes to the same room, with the same dental hygienist and dentist. The appointment takes place for 10-20 minutes during a quiet time of day. Whenever possible, the parents wait in the waiting room, so that the child can focus on the dentist's or dental hygienist's instructions. Only one of them talks at a time.
Occasionally, a mild sedative may be needed. In that case, Dr. Baron has the parent bring the prescription to the office and give it there. If a child needs a major amount of work, he arranges for it to take place in the hospital. There, an anesthesiologist can monitor the child while leaving the dentist free to focus on the dental work. That way, the child continues to view the regular dental office as a positive place and will continue to tolerate less invasive procedures there.
During his first few visits with the child, Dr. Baron may focus only on establishing familiarity with the room and the people in it. He encourages the child to call everyone by their first names and gives the child pictures of the staff to take home. He also may engage the child in some playful activities, like rolling balls on the floor or 'playing the drums' on the stool or chair.
Dr. Baron breaks down the various aspects of the dental examination into small steps and then introduces just one part at a time, and sometimes only one part per visit, depending on what the child can tolerate. If the child gets really upset, he backs off and repeats the previous step. Each visit begins with a review of where they left off the last time. And before the next visit, the parent practices with the child at home, doing the next anticipated activity and using the same dental tools.
Initially, the child comes into the office every 1-2 weeks. Eventually, they build up to about once a month so that the child stays familiar with the office. He acknowledged that coming in so often--and only during a quiet time of day--can be especially difficult for working parents and may require some creativity.
A Behavior Modification Plan For A Four-Year-Old
Dr. Baron showed a videotape of a four-year-old boy who was afraid of just about every aspect of the dental experience, including sitting in the dental chair. So he started by having the child sit on a stool instead.
The first thing he introduced to this child was the feel of the dental gloves against the child's cheeks while counting to 10. Once Dr. Baron got to 10, the child got to take a short break, and then they did it again. Eventually, to lengthen the time, he switched to singing the alphabet song. The child knew that once they got to the letter Z, he would get another break. Then, to lengthen the time even further, Dr. Baron would pretend to lose his place in the song so that 'I would have to start all over!'
During the first few visits, the child was given a little bit of a favorite food each time he got a break. But Dr. Baron soon substituted a token board system (a clipboard with 10 pieces of Velcro cut to accommodate pennies, and a picture of the special reward the child would get at the end of the visit).
Whenever the child got a break, he added a penny to the board; he knew that once he'd added 10 pennies, the visit would be over and he would get the prize.
After teaching the child to tolerate the feel of the dental gloves, Dr. Baron introduced the sequential steps to the examination, and the various pieces of dental equipment it requires: the dental mirror; the air/water syringe and saliva ejector (a.k.a. 'wind' and 'bubbles'); toothpaste; the explorer (using it to count the child's fingers- and everyone else's!); and the dental handpiece (counting fingers with it too so that the child got used to its sound and the way it vibrates).
Each tool was used first on the child's fingernails or hands, before it was used on his teeth. The parent followed the same procedure at home each night (substituting a Braun electric toothbrush for the dental handpiece), while having the child sit back in a chair.
Only at this point, did Dr. Baron introduce the dental chair. First, he just showed the child how it goes up and down. Then he got the child to perch on the foot of the chair for a short ride, and then finally the child was willing to sit in the chair. Dr. Baron made a game of it, letting the child decide whether the chair should go up or back.
At this point, the child would sit in the chair and allow Dr. Baron to use all the previously-introduced tools in his mouth for 20 minutes at a time. As an added bonus for sitting and cooperating so well, Dr. Baron started his 'basketball clinic': he attached a small basketball hoop to the wall and, during each break, the child got to shoot baskets from the chair!
Though it was not shown on the video, the next skills the child needed to learn were how to tolerate a mouth prop and sit still for x-rays. No doubt Dr. Baron will make those experiences tolerable, if not exactly pleasurable, as well!
Obviously, every child is different. Dentists, dental hygienists, and parents need to be creative in their approach and gear it to the child. An effective reinforcement system, using rewards the child really wants, is a must. But clearly, with a dedicated and big-hearted dentist like Dr. Baron, children with autism can enjoy healthy teeth - and their trips to the dentist!
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ABA Course On The Internet
The University of North Texas (UNT) is offering an introductory course on applied behavior analysis (ABA) on the Internet beginning on May 15, 2000. The course has been especially developed for the 'distant learner' by Dr. Sigrid Glenn, Professor and chair of UNT’s Department of Behavior Analysis.
You can visit the course’s web site, at http://webct.courses.unt.edu/public/BEHV2300SG/, to get more information. The site also provides some sense of what it would be like to take a course on the Internet. For enrollment information, contact Dr. June Powell by email at: jpowell@scs.cmm.unt.edu.
With more than 25,000 students, UNT is the fourth largest university in Texas. It has been a pioneer in offering long-distance educational opportunities (e.g. satellite hook-ups at remote sites) and is considered one of the leading 'wired' universities in America.
This sort of outreach is evident in the collaboration between UNT and the Connecticut Center for Child Development (CCCD) to offer a Master of Science degree in Behavior Analysis. This program utilizes a variety of media, including special high-speed telephone lines and other teleconferencing equipment, which allows students at the CCCD facility to interact with the UNT instructors in 'real time.' There is also traditional classroom instruction, with an instructor present, at the CCCD location. To get more information about the CCCD/UNT program, visit the CCCD web site at: www.CCCDINC.org or call 203-882-8810.
Book Review: Teach Me Language
(Mareile Koenig, Ph.D., CCC-SLP, CBA, with help from E.C.)
Even four years after it was first published in 1996, the curriculum in Teach Me Language (TML) remains a singular resource for providing comprehensive, hands-on, explicit instructions for addressing the language weaknesses common to children with pervasive developmental disorders (PDD). The material is particularly well-suited to students with Asperger's syndrome and those who already have achieved the majority of skills typically taught in intensive behavioral intervention programs (e.g., Leaf & McEachin, 1999; Taylor & McDonough, 1996; Lovaas, 1981).
The lead author, Sabrina Freeman, Ph.D., is the parent of a child on the autism spectrum who benefited from many of the exercises that ultimately came to comprise TML. Freeman developed the material in consultation with an innovative speech pathologist. Co-author Lorelei Dak and expanded many of the basic activities provided by Freeman.e, a behavioral intervention professional, fine-tuned
Between the covers of the TML manual, users will find 410 pages describing more than 80 sets of activities (exercises, games, drills, and scripts) for targeting key skills in five areas: 1) social language; 2) general knowledge; 3) grammar and syntax; 4) advanced language development; and 5) academics and language-based concepts. Within each content domain, the skills are represented in a sequence from easier to more difficult.
Program Must be Customized
The authors don't intend for the material to be presented in any particular developmental sequence. Rather, they emphasize the need to customize the program, taking account of each child's specific strengths and deficits, which will vary enormously across the autism spectrum and among individual children. Some children may require experience with all of the exercises while others will require only a subset. Items should be selected by, or in collaboration with, behavioral consultants or speech pathologists.
We have found the areas of social language, general knowledge, and grammar particularly useful. The social language section focuses on conversational skills (e.g., topic cohesion, topic extension, volley patterns); the language of routine activities (e.g., answering the phone, ordering food in a restaurant); perspective taking; problem solving; thinking critically about safety issues in the social environment; and more.
The general knowledge section targets skills that enable a child to introduce and maintain topics of conversation, to develop a topic outline, and to formulate verbal narratives on a variety of topics. The section on grammar targets pronouns, verb structures, question formulation, the grammatical function of phrases, parts of language, and more.
Each individual skill within a content area is introduced relative to its role in the bigger developmental picture and with information about prerequisite skills. Activities that target individual skills are described in behavioral terms. Systematic patterns of prompting and prompt fading are used to bridge the gap between a child’s current and target performance levels. A description of the prompting patterns is included for each activity.
Reproducible materials accompany many of the exercises and games within the main volume. There is also a separate, companion volume, which provides additional reproducible forms. Recommendations for supplementary materials are also given.
In most cases, teachers will need to develop some additional materials (especially topic cards for various of the conversation and grammar games) which pertain to the individual child's interests, general knowledge, and developmental level. Usually teachers will need to consult with parents to obtain the necessary information (e.g. names of child's relatives; child's special likes and dislikes; movies the child has seen, etc.).
Student Prerequisites
According to the authors, there are several conditions that must be met in order for the book to be useful:
1) The child must be a 'visual learner,' i.e. able to assimilate information when it is presented visually. One of the book's basic techniques is to use a visual source (like a printed word, or an icon of some kind) to teach the component parts of a complex concept (e.g. the structural underpinnings of a conversation). Once a given concept is mastered, the visual prompt is faded. Some representative exercises illustrating this technique, are described below.
2) The child must be 'table ready and relatively compliant. 'As the authors observe, 'Compliance is a problem with this population of children, particularly when they are required to work on areas of weakness.' The authors recommend behavioral programs (e.g. 'Lovaas and Lovaas type training') to bring the child to the point where he or she is able to sit willingly and work on language skills such as these.
3) The child must be able to communicate in some way. The authors state that the drills can be effective even with nonverbal children provided they are able to use some alternative communication system (e.g. the Picture Exchange Communication System - PECS). But we haven't ourselves used the program with such children.
In our own experience, children can profit enormously from the curriculum as early as age four, provided that they can be taught to sight read some key words (e.g. the 'WH' words: who, what, when, where, and why) and meet the other criteria stated by the authors.
Teacher Prerequisites
Although TML is intended most of all for parents of children with autism, Asperger's Syndrome or related developmental disorders, the authors emphasize that the materials should be used only as 'a part of a therapy program overseen by professional consultants, and should not be used without the professional guidance of either a behavioral consultant or speech pathologist.'
Anyone teaching this curriculum, be they professionals, paraprofessionals, or experienced parents, needs a strong grounding in behavioral teaching techniques. These techniques include (but aren't limited to): 1) skillful use of reinforcement (extremely critical); 2) prompting and fading; 3) breaking a skill down into its component parts; 3) assessing whether a child is 'ready' to learn a skill; 4) systematic instruction; and 5) training for generalization.
The curriculum also needs to be taught with intensity. According to the authors, the ideal scenario is to have the child work two hours a day on these activities, though less time may still be adequate for a given child. 'It is important to understand, however, that a child who is worked with minimally - i.e. once a week, will not progress very quickly, and in some cases will not be able to grasp some of the more difficult, but necessary, concepts.'
Purpose of the Exercises
Almost every exercise is accompanied by a very clear a 'wild card' which gives the child the choice. Reproducible game cards, which can be photocopied onto card stock for durability, are supplied in the book and identify topics about which 'WH' questions can be asked and answered - e.g. 'holidays,' 'favorite book explanation of its purpose. This feature helps teachers identify areas of need and decide whether or not a given exercise is targeting an appropriate skill. The exercises also can be useful for probing a child's abilities. It sometimes turns out that a child needs a lot of strengthening in areas that traditional language testing may not have identified as being problematic.
A good example of how this may work is the material on teaching 'WH' questions (i.e. 'who,' 'what,' 'where,' 'why,' 'when,' and including 'how') in the 'Grammar and Syntax' section of the book. While a child may have a basic receptive understanding of these concepts, s/he may not demonstrate real expressive fluency in using them. The TML materials first teach the various 'WH' words in isolation (with lots of scripted examples), then mix them up (again scripted) and finally strengthen their expressive use by means of an innovative board game (described below). As the authors observe in their section on 'Why Teach WH Questions This Way?':
This game is designed to promote the child's use of mixed questions. The game constrains conversation so that the child must use a variety of questions that s/he may otherwise not use. Most children with language delays do not ask many different questions. We hope that the child will learn to ask many different types of questions and generalize the question types from the game to unstructured situations in life. We use a game with topics that are interesting to the child so that practicing questions will not seem as tedious for the child. (page 196)
To play the 'WH Question Game,' the teacher must create a spinner (or borrow one from an existing Board Game - Chutes and Ladders does nicely J ). There are two levels of difficulty, with the 'easy' version focused on 'who,' 'what,' 'where,' and 'when,' questions and the 'difficult' version adding 'how,' 'how many,' 'which,' and,' 'what makes you happy/sad,' 'a computer game,' etc.
Opportunities to Involve Peers
Many of the TML exercises can be turned into enjoyable group learning activities with normally developing peers. A good example of this is the 'Finding Out About Someone' exercises in the 'Social Language' section. The material is first taught by the teacher in a one-on-one context. Then, the child practices with as many different adults as possible. Once the child is getting good at the drill, it's desirable to involve normally developing peers - first one at a time and then gradually in larger groups. In addition to strengthening the child's skills, s/he and the peer(s) get to learn more about each other's likes and dislikes. Further, the child gets good practice in learning to listen to the peers.
Another fun game for peers is the 'Ask Me About' game, which is among the 'Conversation Games' in the 'Social Language' section. A spinner (like the one described above) may stop at any one of the following words: who, what, when, where, how and why. Children draw from a deck of topic cards and then need to ask each other questions about the topic, depending on where the spinner stops. Provided the topics are interesting or funny (obviously the teacher will need to generate topics that will be appealing to the age group s/he is working with), the kids can have a very good time with this.
It usually will be enormously beneficial to involve one or more of a child's normally developing peers in various of the conversation exercises in the 'Social Language' section. One good example is the 'contingent statements' exercises. This drill teaches a child to recognize, and use, the various contingent statement patterns that typically underlie a conversation: e.g. 'comment-comment,' 'answer-comment,' comment-question,' 'question-question,' etc. Once the child has mastered this difficult material in one-on-one sessions with a teacher, the child can practice with peers.
Peers often particularly enjoy participating in the 'Fact or Opinion' exercises. (Who doesn't like to give opinions about hot topics? J ), and the 'Movie Conversation' activity. In addition to providing fluency practice, these exercises teach the child (via scripting) to use certain vernacular kinds of phrases that might otherwise be missing from his or her vocabulary, like: 'In my opinion…,' 'How do you feel about….,' 'Do you think…,' 'Wasn't it cool when…,' 'Remember the part about…,' 'The best part was when…,' etc.
'Conversational Self-Monitoring' is another exercise that can and should be done with peers once it is mastered with the teacher. Using specially designed form, the child learns to record data during a conversation that tracks the extent to which s/he maintains an appropriate balance between questions and comments. At least in the beginning stages, there is likely to be quite a pronounced imbalance, with 'questions' exceeding the more difficult 'comments' to an inappropriate extent.
In the classroom setting, the child can use TML's 'Conversation Record' form to keep track of how often s/he initiates conversations. This is an activity that, at first, probably will need considerable prompting. It also will require very specific goals (the authors suggest that six times per day be the minimum requirement) and an effective reinforcement/motivation system.
Fitting the Child's Learning Style
TML's overall approach shows how complex tasks can be broken down into smaller components for reconstruction as children gain mastery. It demonstrates the effectiveness of pairing visual and verbal information to support complex information processing with increasing levels of independence. Close attention to the strategies in this manual can help users appreciate the learning style of many children on the autism spectrum and to develop successful instructional variations to fit that style.
While TML (as a 'package') has not been tested empirically, its overall protocol is based on behavior change procedures with proven effectiveness for children on the autism spectrum. The logic and detail with which this manual is written leaves one with the impression that the authors truly have 'been there and done that.' We thank them for documenting their work so that others don’t have to re-invent the wheel.
(Mareile Koenig, Ph.D., CCC-SLP, CBA/PA, is an Associate Professor of Communicative Disorders at West Chester University in West Chester, Pennsylvania, and a Certified Behavior Analyst. E.C. is a parent and CT FEAT Board member.)
Editor's Note: A more detailed description of the skills addressed in TML, together with background information about the authors, can be found at the TML web site: http://fox.nstn.ca/~zacktam/index.html. TML costs $59.95. The TML CompanionWorksheets book (optional but very helpful) costs $19.95. Both books can be purchased from Different Roads to Learning, at 1-800-853-1057 or at the company's web site at www.difflearn.com.
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WE'D LIKE TO HEAR FROM YOU!
CT FEAT welcomes feedback from our readers regarding the contents of the CT FEATNewsletter. Are you enjoying the newsletter? How might it be improved? We invite your comments and suggestions. Please send your ideas to the newsletter's editor at CT FEAT, P.O. Box 388, Ellington, CT 06029-0388, or email Beth at info@ctfeat.org. If you'd like us to consider publishing your remarks as a 'letter to the editor,' please include a daytime phone number where you can be reached.
Conferences And Workshops
During the next few months, there will be some wonderful ABA conferences within easy driving distance from Connecticut.
- March 9-10, 2000 (Thursday-Friday), New York, New York, 'Conference 2000: International Conference on Science in Autism Treatment.' Sponsored by the Association for Science in Autism Treatment (ASAT), this conference features many of the country's leading ABA professionals, together with various other distinguished autism professionals. Among the more than 30 presenters: Catherine Maurice, Ph.D. (speaking about ASAT); Bridget Taylor, Psy.D. (on incorporating peers in the treatment of children); James Partington, Ph.D., BCBA (on behavioral language assessment and intervention); Gerald Shook, Ph.D., BCBA (on identifying qualified behavior analysis practitioners); Gina Green, Ph.D., BCBA (on brain plasticity); James Mulick, Ph.D. and John Jacobson, Ph.D., BCBA (on cost-benefit analysis of behavioral and fad treatments); Deborah Fein, Ph.D. (on early identification); and Marie Bristol-Power, Ph.D. (on autism funding and research in the new millennium). The conference costs $225.00 for both days. There also will be two separately priced, post-conference workshopson Saturday, March 11. One workshop concerns legal issues and the other describes the nuts and bolts of setting up a site-based ABA program. Session One is 'Effective Advocacy: Protecting the Rights of Individuals With Autism' presented by attorneys Charles Jelley, Richard O'Meara, and Jay Eisenhofter. It will be held from 9:00 a.m. to 12:30 p.m. Session Two is 'How to Establish a Behaviorally Based Education Program for Individuals With Autism' presented by Suzanne Letso (Executive Director) and other staff from the Connecticut Center for Child Development (CCCD), together with a CPA and a development consultant. The price for the Saturday workshops is $75.00 for both sessions, or $50.00 for each individual session. For further information, contact ASAT at: South Hills Medical Building, Suite 201, 575 Coal Valley Road, Jefferson Hills, Pennsylvania 15025; (516) 466-4400; E-mail ASAT@autism-treatment.org
- April 5-7, 2000 (Wednesday-Friday), Wilkes-Barre, Pennsylvania, 'Autism 2000 Conference.' Sponsored by Human Services Consultants Management, Inc., this conference features an extraordinary lineup of some of the 'hottest' speakers in the ABA world, including Mark L. Sundberg, Ph.D. and James W. Partington, Ph.D., authors of the influential book Teaching Language to Children with Autism and Related Disabilities. They will be presenting together in a special separately-priced workshop on their innovative assessment and intervention strategies for teaching language skills. Other outstanding presenters include: Vincent J. Carbone, Ed.D. (renowned for his popular lectures based on Sundberg and Partington's work, but who here will be talking about 'How to Teach Instructional Cooperation to Young Children With Autism'); Mary Jane Weiss, Ph.D. ('Developing Play Skills in Children with Autism' ); Sandra Harris, Ph.D., ('Siblings Talk About Autism'); Len Levin, Ph.D., ('Integrating Children With Autism: Strategies for Regular Education Teachers and Supported Inclusion Personnel'); Edward Fenske, M.A.T., Ed.S. ('Some Not-Discrete-Trial Behavioral Teaching Procedures'); John Jacobson, Ph.D. (providing a cost/benefit analysis of early intensive intervention); Stein Lund and John Barnard ('Anatomy of a Successful Intervention Program for Young Children With Autism'); Raymond Romanczyk, Ph.D. ('Assessment and Intervention for 'Difficult to Teach' Children'); Anthony Castrogiovanni, Ph.D. and Lori Frost, M.S., CCC-SLP (on the Picture Exchange Communication System -PECS); Andrew Bondy, Ph.D. (an overview of 'the Pyramid Approach to Education'). There also will be presentations on neurological and biological issues, and a legal panel on legal rights and services for people with autism. This conference costs $350.00 for all three days or $150.00 for a single day. The Sundberg/Partington workshop, which runs an entire day, is separately priced at $125.00. You can obtain more information, including on-line registration, at the conference's web site: www.hscm.com, or call (570) 714-2350.
- April 30, 2000 (Sunday), Sturbridge, Massachusetts, 'Teaching Language to Children With Autism With Dr. Vincent Carbone.' During the past year or so, there has been a great deal of interest in the work of behavior analysts Mark Sundberg and James Partington, who have developed some innovative assessment and intervention strategies for teaching language. Workshops by Vincent Carbone, Ed.D., CBA, have helped to popularize for a larger audience this somewhat technical material. This is an intensive one-day workshop that will describe how to use behavior analysis to classify language and assess a child's repertoire across the important classes of verbal behavior. The Carbone workshop follows, and is part of, a larger conference, 'Autism Update: A Game Plan for the Future,' sponsored by the Flutie Foundation and Children Making Strides. The full conference, which takes place April 28-29, 2000 (Friday-Saturday), is not focused on ABA treatment (though Dr. Carbone will present one short workshop on discrete trial training programs during it) but rather on biological issues and other kinds of treatment interventions. There also is another day-long, separately-priced pre-conference workshop by Pamela J. Wolfberg, Ph.D. on 'Integrated Play Groups' which may prove interesting. Wolfberg is the author of Play and Imagination inChildren With Autism (1999) and reputedly has done some very worthwhile work on involving normally developing peers in teaching play skills to children with autism. The conference costs $150.00 for both days or $100.00 for one day. The separate workshops by Carbone and Wolfberg cost $100.00 each, discounted to $50.00 for those who attend the two-day conference. Further information regarding this conference, including registration forms, can be found online at www.childrenmakingstrides.com or by calling (508) 759-6754.
- Save the Date: May 12-13, 2000 (Friday-Saturday), Atlantic City, New Jersey, 'COSAC's 18th Annual Conference.' The annual conferences put on by the New Jersey Center for Outreach and Services to the Autism Community (COSAC) enjoy a well-deserved reputation for excellence. Once details about the conference become available, they will be posted at the CT FEAT web site along with other updated conference information. You can reach COSAC directly at (609) 883-8100. Another good source for conference information in our region is the web site maintained by the New York Autism Network: www.albany.edu/psy/autism/autism.html.
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The Great Video Debate:
Should They or Shouldn't They?
(by Lynette Rorer)
I have been involved with autism for almost five years now, and every now and then the topic comes up of videos -- is it OK for our kids to watch them? They sure do love them! Or, should we eliminate them completely -- the cold turkey route -- in order to get the dreaded 'silly talk' under control?
Some people believe that the echolalia that so often develops after our kids become verbal, and frequently contains scripting from videos, is a welcome and necessary step in the development of functional speech. Some say that their kids began to communicate by taking snippets of 'video talk' and inserting them appropriately into conversations. Eventually, they say, their kids were able to speak quite well, although still doing a lot of scripting just for fun!
Being the parent of a child who earned the crown for 'Silly Talk Queen' in both 1996 and 1997, I'd like to share my thoughts on this issue. Reagan was an avid video viewer already at the age of nine months -- she would stand in front of the television, clutching the TV table for support and remain mesmerized for an entire 60 minute video. Thinking back, why we allowed this is totally beyond me, and figures somewhere into the denial equation. For some reason, we thought it required intelligence to be mesmerized by a video at nine months!
As she approached two, we were becoming concerned. When she started to imitate the characters' actions while watching herself in the mirror (and TOTALLY ignoring everyone and everything else), it really started to sink in. Shortly thereafter, we received the diagnosis. At this point, Reagan had limited verbal ability, but over the next six months, the 'silly talk' came in and once it started, there was NO stopping it!
We tried a lot of things to eliminate the 'silly talk'. We, of course, started out with the acclaimed 'NO SILLY TALK' approach. It failed miserably. Reagan just ignored us -- what else was new? We tried entering into her monologue, ha! At times it was almost impossible to do therapy because Reagan could retreat so deeply into herself while engaging in this mammoth stim. And, she kept up her perseveration on the characters' actions as well.
The last straw was when we were driving in the car and I turned around excitedly thinking she had called me for the first time. I quickly recognized the line as coming from her favorite movie, the Aristocats, 'Mama, I'm frightened, I want to go home!' And, I could see by Reagan's vacant look that she was no closer to calling me Mama than she'd been a year ago.
It was at this time that not only did the Aristocats video go in the trash, but I finally worked up the resolve to take her cold turkey off her video fix. It turned out it wasn't really that hard, and I found that in the time that she would have been watching videos, we were actually getting some good work done. The effect wasn't immediate -- those video lines stay locked in their little heads for some time after the last actual viewing. But eventually it decreased, and in its place was more appropriate speech and more reinforcement for her, which resulted in still more appropriate speech. It was like getting the cobwebs out of her head so she could tune in. And, with the increase in language came a little more social involvement. This process has been continuing ever since.
We fought perseverative play alongside of the verbal stims.
We had to watch very closely when she played alone because many times her seemingly 'great' play was actually a re-enactment of some video scene. This can be very difficult to spot, and I imagine a lot of kids get good marks at their psychological evaluations due to perseverative video play. We eventually triumphed over this too, and today Reagan is allowed to watch videos, though she rarely has the time. She's busy with soccer, swim team, brownies and a host of other little girl activities.
But, we recently banned another auditory delight -- the car radio. I just got tired of both my kids sitting zombie faced in the car reacting only to the music and never offering any conversation. I told Reagan, 'People like to talk to each other in the car; when you listen to the radio, you zone out.' I asked her, 'Is that good or bad?' 'Bad,' she replied. 'That's right, people will think you don't like them if you don't talk to them.'
The immediate result of this was a barrage in the form of a long rambling report on the first grade's field trip to Mrs. Baird's Bakery, directed at my husband who was trying to carry on a conversation with a merchant. When we got back in the car, Reagan beamed -- 'Now can we turn Radio Disney back on?' Amused by this as we were, we stuck to our guns. The radio is still not back on and the conversation is flowing! Sometimes I'm tempted to turn it on just to get some peace! But rarely, because the sound of Reagan's voice is so sweet and I'm still blown over by just about everything she says, no matter how annoying!
In closing, I would like to add that there is a place for video viewing in the therapy world. I have read some interesting posts on the Me List [an Internet discussion list for parents and professionals who are doing ABA programs - see CT FEAT web site for more information] about video modeling for social and play skills. I have heard of people stopping the action on a video to ask WH questions. I wish we would have thought of that! And, a bit of video viewing as an over-the-top reinforcer is probably OK. But, overall, I believe what our kids need is to be drawn out in whatever way we can find to do it. Video viewing requires NO interaction, it is repetitive and addictive. If you've ever sat in front of your computer screen for endless hours, you may be able to relate. There are times when I literally CANNOT get up and go to bed! Our kids need our help to pull them away from the television and into our world. They can't do it on their own.
(Lynette Rorer is a parent who wrote this article for the December/January edition of the FEAT North Texas (FEAT-NT) newsletter. An edited version of the original article is reprinted here with permission. You can read the full text of this article, as well as other interesting parent-authored articles, at the FEAT North Texas web site: http://home.flash.net/~sjapollo/featnt.htm.)
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CCCD HOLDS SPRING FUNDRAISER:
'CELEBRATING OUR ACHIEVEMENTS'
The Connecticut Center for Child Development (CCCD), a private school which uses instructional methods based on the principles of Applied Behavior Analysis (ABA), will be holding its spring fundraiser on Saturday, April 29, 2000, from 6:30 to 9:30 p.m.at the Milford Yacht Club.
The 'Celebrating Our Achievements' event marks CCCD’s first anniversary at its new location on 925 Bridgeport Avenue in Milford, Connecticut. Before the fundraiser begins, from 5:00 to 6:15 p.m., there will be tours of the school’s new facility.
The fundraiser will feature a cocktail reception, silent and called auctions, and musical entertainment. The cost is $50.00 per person. CCCD’s annual fundraisers have a reputation for being a lot of fun. And the cause is certainly a worthy one. For more information, call CCCD at: 203-882-8810 or E-mail to: CCCDINC@aol.com.
CREC River Street Autism Program - 2000 Lecture Series
The lectures will be held in the River Street School from 7:00 to 9:00 p.m. If the school is closed, or dismissed early due to bad weather, the lecture will not take place.
There is no charge for parents of children with autism. Cost for professionals is $15.00 in advance, $20.00 at the door. For more information, call Susan Hayes at (860) 298-9079.
Tuesday, March 14th - 7:00-9:00 p.m. 'Socialization for Friends and Family Members'
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.
Tuesday, May 13th - 7:00-9:00 p.m. 'Surviving the Summer: Tips for Leisure Activities'
Presented by: Rebecca Ludlow, B.A.
Tuesday, March 14th - 7:00-9:00 p.m. 'Socialization for Friends and Family Members'
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.
Tuesday, May 13th - 7:00-9:00 p.m. 'Surviving the Summer: Tips for Leisure Activities'
Presented by: Rebecca Ludlow, B.A.
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New York Department Of Health Autism Guideline
Now Available Online
The New York State Department of Health (DOH) Clinical Practice Guideline: Autism/Pervasive Developmental Disorders, released in 1999, is now available online in its Quick Reference Guide version at www.health.state.ny.us/nysdoh/eip/menu.htm.
The guidelines were developed by an independent, multi-disciplinary panel of topic experts, clinicians, educators, and parents. The DOH panel used the same methodology and guideline format that has been used in recent years by the Agency for Health Care Policy and Research, a part of the Unites States Public Health Services.
Parents here in Connecticut should find these guidelines much more useful than the Report of the Connecticut Task Force on Issues for the Education of Children with Autism. The task force producing the Connecticut report did not follow any scientific protocol and based its recommendations largely on anecdotal evidence.
The New York guidelines recommend 'that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention programs for young children with autism.' The guidelines further recommend that 'intensive behavioral intervention include a minimum of approximately 20 hours per week of individualized behavioral intervention using ABA techniques (not including time spent by parents) (Quick Reference Guide, page 33, emphasis in original).'
The guidelines considered a voluminous amount of scientific research and assessed the evidence supporting a variety of interventions, including the 'Developmental, Individual Difference, Relationship model (DIR - also known as 'Floor Time' and associated with Dr. Stanley Greenspan), and Sensory Integration therapy (SI). The report concluded that 'no adequate evidence has been found that supports the effectiveness' of these methods for treating autism (Quick Reference Guide, pages 39-40).
After evaluating the available research regarding Auditory Integration Training (AIT) and Facilitated Communication, the report concluded that these interventions were 'not effective' and recommended that they 'not be used as an intervention method for young children with autism (Quick Reference Guide, pages 42-43).'
The guidelines are available in three different versions: Guideline Technical Report (434 pages); Report of the Recommendations (322); and Quick Reference Guide (108 pages). For further information regarding this report, the full title of which is Clinical Practice Guideline: Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children (ages 0-3 Years), contact the New York State Department of Health, Early Intervention Program, Corning Tower Building, Room 208, Albany, New York, 12237-0618; 528-473-7016.
BIRTH TO THREE SPONSORS ABA GRADUATE COURSES
Connecticut’s Birth to Three System, in conjunction with Penn State University in State College, Pennsylvania, is sponsoring a series of four graduate courses in Applied Behavior Analysis (ABA) for early interventionists and educators. 'Distance learning' technologies utilizing satellite hookups make it possible for instructors in Pennsylvania to teach students in Connecticut.
Approximately 25 students are enrolled in the program, which is being coordinated by Deb Resnick in the Hartford office of the Birth to Three System.
Three out of four of the courses consist of two all-day classroom sessions, which are held on Saturdays in the Hartford area. The remaining course consists of attending the week-long 'Summer Autism Institute' at Penn State University.
The first course, 'Basic Principles I,' started on January 29, 2000. The second one, 'Basic Principles II,' will be held this upcoming spring, followed by the 'Summer Autism Institute' in August of 2000. The series concludes with a fourth course on 'Extended Applications of Applied Behavior Analysis' beginning in the fall of 2000.
Tuition to Penn State is approximately $400.00 per credit, amounting to $1200.00 per 3-credit course. Students also will have to cover travel, food and lodging costs for the week that they are in Pennsylvania attending the summer institute.
These four required courses will make otherwise qualified individuals eligible to take the national certification exams to become a Board Certified Behavior Analyst (BCBA) or a Board Certified Associate Behavior Analyst (BCABA).
In order to sit for these exams, one must also have a specified amount of 'supervised' or 'mentored' clinical experience. In addition, BCBA candidates must have a Master’s Degree and BCABA candidates must have a Bachelor’s Degree.
For more information about the certification process, you can visit the National Behavior Analyst Certification Board's web site at www.bacb.com. For more information about the Penn State University program, visit www.outreach.psu.edu/Statewideprograms/ABA, or call Ed Donovan, the Penn State program coordinator, at (412) 242-3054.
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EDITORIAL:
CONNECTICUT NEEDS NEW AUTISM TASK FORCE
In 1993, the Connecticut Department of Education convened a task force of professionals and parents to prepare a report on 'best practices' for educating children with autism spectrum disorders (ASD). The resulting Report of the Connecticut TaskForce on Issues for the Education of Children With Autism (hereafter referred to as the 'Report') was published in April of 1996 and then reissued, with an expanded list of resources and additional appendices, in 1998.
Though the effort was motivated by the best of intentions, the resulting product failed to identify which interventions are scientifically validated as effective in helping children with autism.
Unlike the recent task force efforts in Maine and New York (discussed elsewhere in this issue), the Connecticut task force did not adhere to any recognized scientific standard in assessing the evidence. As a result, many of its treatment recommendations are either unsupported by reliable evidence or outdated.
In many respects, the Report has made a positive contribution to establishing a more enlightened educational environment for children with autism. Especially valuable is its description of the essential components of an appropriate educational program. These are: 1) earliest intervention; 2) parent involvement; 3) a focus on social interaction and communication; 4) intensive programming; 5) direct teaching within a structured setting; 6) programming for generalization; 7) specifically trained personnel; 8) planned integration with typical peers (pages 41-52).
Some of the Report’s other findings also helped to change many of the inappropriate educational practices prevailing at the time the Report was issued. For example, the Report’s recognition of the necessity for intensive, year-round services convinced many school systems to increase the intensity and duration of the services they were providing to children (page 44).
The Report’s finding that an appropriate educational plan needs to provide for the direct instruction of play and social skills also represented an important step forward. As the Report states, 'a much more deliberate focus on social behavior must be built into any effective education program (page 39).' And '..it is essential that ‘free play’ time be utilized as an opportunity for educators to teach play interactions.. with peers, rather than leave such interactions to chance. Without such assistance, free play is often nonproductive at best, or used as a time for self-stimulatory behavior, at worst' (page 43).
Despite these achievements, the Report is very disappointing in the realm of specific recommendations about interventions. Unlike the task force reports issued in New York and Maine during this past year, the Connecticut Report recommends interventions and practices which are not supported by scientific research.
The Report identifies 'two major approaches' to teaching students with autism: Applied Behavior Analysis (ABA) and 'Developmental/Social Pragmatic' (DSP). The report claims that 'both approaches are based on research,' but provides no citations to substantiate that assertion.
Mac Os Versions
Though the Report makes no mention of it, there is significant research supporting the effectiveness of ABA1. In contrast, there is no peer-reviewed outcome study supporting the effectiveness of the DSP model. According to the Report’s own guidelines for the 'evaluation of new interventions': 'The best studies of treatment effects are those which employ some forms of control or comparison group to enable researchers to identify which effects are likely to really result from the treatment' (page 61). Evidently, 'old interventions' like the DSP approach aren’t held to the same standard as 'new' ones.
Because there are no controlled studies documenting the DSP model's effectiveness, the New York and Maine task force reports (which scrupulously adhere to scientific evidentiary standards) don't even mention it in their review of treatment models.
By contrast, the Connecticut Report clearly favors the DSP approach. Most of its recommendations and 'teaching tips,' including the material on 'Characteristics of Speech, Language and Communication' (Chapter VIII) and almost all of the instructionally related appendices (Appendices E, F, and J), reflect that bias.
When the Report was reissued in 1998, this imbalance became even more apparent. One of the only changes was to add yet another appendix (Appendix F) supporting the DSP approach. This document, by Barry Prizant, Ph.D. (considered the primary developer of the DSP model), purports to describe the differences between the DSP approach and what he calls 'traditional behaviorism.' Not too surprisingly, it is hardly an impartial portrait of the two approaches.
Echolalia Mac Os Catalina
The Report also makes the claim that an 'eclectic approach to educational programming,' involving 'selecting techniques from different approaches' is desirable (page 45). However, there is no scientific evidence that mixing various approaches is appropriate. Further, there is no documentation indicating that any children have achieved a 'normal' level of functioning using an 'eclectic' approach.
Perhaps the most glaring evidence of the Report’s disregard for scientific standards is its recommendation that children with autism be taught to read using the 'Whole Language' approach (Appendix I, page 80). We are aware of no scientific evidence supporting the effectiveness of this largely discredited approach for teaching reading to any children, including those with autism.
The task force’s assumption that autism spectrum disorders are always permanently disabling2 is also contradicted by the research. With appropriate intervention, many children can and do prove capable of attaining a normal level of functioning, as documented in the Lovaas ABA study described in footnote one.
DSP practitioners cannot, and do not, make the claim that their intervention model can produce normal levels of functioning. For the adherents to this approach, indeed, the supposed 'permanency' of autism is almost an article of faith.
Recommended Guidelines for New Task Force:
New York and Maine have demonstrated that it is possible to undertake a neutral and unbiased analysis of the existing scientific research regarding autism intervention. The New York task force used the same methodology and guideline formats that have been used in recent years by the Agency for Health Care Policy and Research (AHCPR), a part of the United States Public Health Service. This methodology was selected because it is an 'effective, scientific, and well-tested approach to guideline development.' Connecticut should adopt the same high scientific standards.
It is also essential that participants in the next task force have no financial interest in promoting one intervention approach over another. The current Report’s inclusion of an Appendix authored by one of the task force members, and explicitly identifying her private consulting business, creates at least the appearance of impropriety. Unfortunately, this serves to undermine one’s confidence in the entire process which produced the Report.
A new task force also should include some parents whose children have received early and intensive behavioral intervention programs. The presence of parents with direct experience of this treatment approach no doubt would eliminate some of the mischaracterizations of ABA therapy that appear in the current Report.
The parents and professionals who worked on the existing Report deserve our respect and gratitude for their efforts. Given the dramatic improvements in our knowledge about autism and its treatment during the past decade, it is not surprising that the Report should have become so quickly outdated.
Despite the hard work and good intentions that produced the 1996 Report, it should not be reissued again, as it was in 1998. As the Report itself recognizes, children with autism spectrum disorders need the best possible intervention at the earliest possible opportunity if they are to achieve their potential.
These considerations make the convening of a new task force, and the production of a document that is scientifically based, an urgent matter. Our children’s futures depend upon it. And they deserve no less.
EDITOR, CT FEAT Newsletter
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The two most influential articles on this subject matter are not even cited in the Report: 'Behavioral treatment and normal educational and intellectual functioning in young autistic children,' Journal of Consulting and Clinical Psychology, 55, 3-9, Lovaas ( 1987); and 'Long term outcome for children with autism who received early intensive behavioral treatment,' American Journal on Mental Retardation, 4, 359-372, McEachin, Smith, & Lovaas (1993). The first article summarizes Lovaas' groundbreaking study in which 9 out of 19 children receiving intensive behavioral intervention achieved normal functioning. The second article is a follow up study of those same nine children six years later.
2This is illustrated by the descriptions of autism as a 'lifelong disorder' on page four and as a 'lifelong disability' on page 14.
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Coalition Promotes Services for Adults
Within the broad diagnostic category of Pervasive Developmental Disorders (PDD), there exist various discrete diagnoses (e.g. autistic disorder, PDD Not-Otherwise-Specified, and Asperger’s Disorder). Among -- and even within -- these separate diagnostic subcategories, the severity of impairment varies greatly.
Most individuals with these 'autism spectrum disorders' (ASD) do not have classically defined 'mental retardation.' But, to varying extents, and due in part to a lack of information about effective interventions when they were children, most of them remain disabled throughout their lives - e.g. unable to hold a job, use public transportation, drive a car, or otherwise enjoy an independent life. Instead, they must rely on their families for support.
Mac Os Mojave
As things currently stand in Connecticut, there are no appropriate services for individuals with ASD beyond the age of eighteen, unless they have a dual diagnosis of autism and mental retardation or some other severe mental health problem. Lois Rosenwald and Maggie Casciato, parents of grown children with mild autism (i.e. without classic mental retardation), have formed a 'Legislative Action Coalition for Autism Spectrum Disorders' seeking improved services for this population.
Rosenwald (president of the Greater New Haven PDD/Asperger Support Network) and Casciato (president of the Atypical PDD/Asperger Support Group in Fairfield county) advocate the establishment of a Department or Division of Developmental Disabilities within the Department of Mental Retardation which would service all those on the autism spectrum. This department would provide vocational assessment and training, independent living supports, job coaching, social skill training, and other related social and educational supports.
The Legislative Action Coalition is circulating a 'Petition for Services for Individuals With Autism and Related Pervasive Developmental Disorders' which will be sent to Connecticut legislators. The Coalition also is urging parents to write their legislators supporting legislative action on this issue. For further information about the effort to secure these very needed services, contact the Coalition at 27 Broadview Road, Cheshire, Connecticut, 06410 or call (203) 272-7529.
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