(Catherine Maurice, Ph.D.)

The Association for Science in Autism Treatment (ASAT) was formed by parents and professionals dedicated to ensuring that children and adults with autism lead lives filled with dignity, purpose, peace and independence.

It is probably safe to assume that most parents and professionals who care about people with autism support this goal. But difficulties – even conflicts – may arise when people of good intentions differ with each other over the means of achieving goals they share.

Currently, the field of autism is marked by a high degree of such conflict. Rather than ignore it, it may be a good idea to spell out clearly what ASAT is about so that others have the opportunity to support our mission based upon a clear understanding of that mission. We stand for science in autism treatment.

To understand why ASAT has chosen such a focus, a brief description of the historical context in which we are launching our cause is in order. That history reveals two dominant trends:

 

• A troubling parade of ineffective treatment models, miracle cures and faddish "breakthroughs." Often these are sensationalized by the media, fueled by the anxious love of mothers and fathers, and adopted readily by service providers, in spite of the absence of any evidence of effectiveness. The most persistent of these ineffective treatments are those that are based upon outdated psychodynamic theories, wherein autism is seen as an emotional wound. In the past, this putative emotional fragility was treated largely through psychoanalysis; today it is addressed through play therapy. This model continues to be offered by those who see their role as understanding and reassuring a frightened child.

   

   

• The tendency of many in the professional community to ignore or even denigrate treatments that do have good, supportive data. Indeed, the very notion of data, outcome measures or objective validation simply does not figure in much of the published literature on autism intervention. Rather, the norm has been for many authorities to posit a speculative cause for autism, and propose an equally speculative remediation of the condition, based largely upon personal belief, or "clinical intuition."

   

What gave rise to these trends? Probably a multitude of factors, too complex to analyze at any length here. However, we can at least identify some of the major formative influences on treatment politics.

 

• From the moment autism was identified in the 1940s, erroneous assumptions about its etiology have flourished. Children with autism are often beautiful, with no obvious physical impairment or distinguishing features. This physical normalcy is but one of the factors providing a fallow ground for the idea of autism as an emotional wound.

   

• Universities and medical schools provide little training in how to evaluate the effectiveness of proposed autism treatments; hence, there is a troubling scientific illiteracy on the part of the people from whom we most often seek such guidance. In fact, until recently, medical attention was focused largely on endlessly redefining the symptoms of autism, rather than on any effective treatment.

   

• In the absence of accurate, objective information about effective autism interventions and outcome statistics, our educational system has failed to meet the profoundly complicated learning needs of our children. Many educators have low expectations for children with autism, in part because educators are seldom trained to overcome autistic behaviors that interfere with learning – behaviors which may include crying, screaming, self injury and aggression. Consequently, learning does not take place.

   

• In the culture at large, there are many negative assumptions about the very nature of science. Some people tend to equate science with all that is cold, dangerous and controlling. This problem is exacerbated by the inability of many scientists to translate their discoveries into the vernacular. Instead, many rely upon an impersonal, mechanistic jargon to convey their findings about human beings. In contrast, treatments cloaked in a language of quick fixes, nurturing love or instinct have strong emotional appeal.

   

• In some quarters, there is strong resistance to the very notion of treatment itself, analogous, perhaps, to similar arguments raging around other conditions, such as deafness. Rather than seeing autism as a fundamental disability – one that strips a human being of many possibilities and promises – some advocates fiercely insist on a policy of acceptance of autistic individuals for who they are, and decry any attempts at treatment as oppression.

   

• There are serious problems creating turmoil within the field of behavior analysis, a field scientifically validated as effective in the treatment of individuals with autism. These include frequent misapplication of behavioral science by unskilled or unethical practitioners; the absence of nationally accepted standards of competency; and the claims of a few individuals to be the only providers of worth.

   

• And finally, there is the seductive rhetoric of an ideology that keeps trumpeting such appealing concepts as open-mindedness, choice, an eclectic approach, and options.

   

Unfortunately, open-mindedness without healthy skepticism, choice that is not informed choice, and options embraced for the sake of option alone only prolong the sad history of failed treatments.

But whatever the causes, the resultant dismissal of treatments backed by science has disastrous consequences for our children’s already fragile future. When children are denied effective treatment, there is a double tragedy: their potential for growth and learning is thwarted; and they often become the subjects (or objects) of repeated, ineffective experiments as parents pursue all possible flickers of hope.

All these political ideologies have survived, however, largely because both professionals and parents have allowed their survival. It is a natural human tendency to follow personalities, especially charismatic ones, rather than dry, scientific literature. We tend to seek warm and compelling stories, rather than cold statistics. We are very willing to accept the expertise of people who base their recommendations upon anecdote and opinion, their "thirty years in the field," their clinical judgment; and we are often bored with people who talk about data, numbers, controlling for variables, and the like.

But after the debacle of the Bettelheim era, where one man’s opinion was allowed to dominate autism treatment and shatter families, it is clear we need to challenge every one of these experts with at least as much skepticism as we bring to the purchase of a used car, let alone to life-shaping decisions for our children. We need to add critical thinking to compassion, or we will continuously follow every self-confident savior and every sad dead end.

So where does that leave us, we who love our children, and who wish to make decisions based upon both tenderness and tough thinking? It leaves us in need of reliable guidance, founded on facts, not fame.

It is that pressing need that has given rise to ASAT’s mission: to disseminate scientifically sound information about autism and treatments for autism. But, recognizing that access to accurate information is only half the battle, ASAT will promote effective training models in university settings. And recognizing that treatments will only be as effective as the people providing the treatments, ASAT will support the development of professional credentialing, and standards of education and treatment.

As a guiding principle, ASAT intends to evaluate claims about treatment from the perspective of sound, scientific reasoning. ASAT is locked into no one treatment for autism, but we will not hesitate to let people know which treatments are supported by solid scientific research, and which are not – be they from medical, behavioral or educational science. We are seeking to move public awareness away from personalities and fads, and into an understanding of the true hope that scientific research has produced, and will continue to produce, for all of our children.

How will ASAT provide such guidance? Not through any personal opinion or belief of ours, but through the help of an exemplary Advisory Board drawn from both the biological and behavioral sciences – men and women whose strongest credential is not their popularity, but their adherence to the highest standards of scientific integrity. ASAT claims no authority other than what reason and science have supported. We have no illusions about the fallibility of human opinion. But one thing we do know is that children and adults with autism, and the people who love them, can be helped. We know autism is treatable, but only when people get the information and help they need.

And finally, it is important to note that ASAT will use the tools of science to achieve our mission, but we are not working for science as an end. The end, for all of us, lies not in the mere furthering of human knowledge or human technology. The end lies in the lovely faces of our children, in their sweet eyes, in their profound worthiness. It is science that guides us, but love that inspires us, and we will not fail our children.

Editor’s Note: Catherine Maurice is the well-known author of Let Me Hear Your Voice (1993) and the editor of Behavioral Intervention for Young Children With Autism (1996), two ground-breaking books which have revolutionized autism treatment in this decade. She is also a founding board member of the Association for Science in Autism Treatment (ASAT). This article first appeared in ASAT's spring 1999 newsletter and is reprinted here with permission. If you'd like to learn more about ASAT, you can contact them at: 575 Coal Valley Road, Suite 201, Jefferson Hills, PA 15025; phone (412) 469-7601; or email ASAT@autism-treatment.org.

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(Mareile Koenig, Ph.D., CCC-SLP, CBA/Pa)

Editor’s Note: During the past year or so, there has been tremendous interest in the work of Mark Sundberg, Ph.D., and James Partington, Ph.D., behavior analysts who have developed innovative assessment and intervention strategies for teaching language skills to children with autism and related disorders. Some of their material is quite technical, and they frequently conduct workshops for training people to use the specialized instruments and techniques they have developed. (See Conference Listing on page 6 for two such workshops). In this book review, Mareile Koenig, Ph.D., provides a very extensive description of their work.

Since 1996, a number of publications have brought behavioral strategies for educating children with autism into clearer view of a larger audience (e.g., Maurice, Green & Luce, 1996; Sundberg & Partington, 1998; Leaf & McEachin, 1999). Each was written for parents and professionals, and each has undoubtedly improved the lives of many children in many ways. That in itself deserves a round of applause. Two of these manuals present frameworks for addressing target skills across several developmental domains (Maurice et al., 1996; Leaf & McEachin, 1999), while one is devoted exclusively to language (Sundberg and Partington, 1998). This review focuses on the latter, which is a "must read" for anyone serious about communicative enhancement.

Before I review the book’s contents, here’s some background: The current edition of Teaching Language To Children with Autism or Other Developmental Disabilities is actually the 7th version of a manuscript more than 25 years in the making, and it is based on research and experience accumulated during that time. It has also been influenced directly by some of the best minds in the field of Applied Behavior Analysis, including Dr. Jack Michael, Dr. Ernest Vargas, and Dr. Jerry Shook. For more information, visit http://corteks.com/STARS.

Now for a review of the book’s content: Teaching Language to Children with Autism or Other Developmental Disabilities is based on the conceptual framework of Skinner’s (1957) Verbal Behavior. Its 315 pages include four divisions and an appendix. The first division (chapters 1-4) describes an assessment protocol for children at the earliest stages of language development. The protocol utilizes a combination of interview and direct observation to identify a child’s typical performance levels in several natural settings. Observations are focused on the following types of behaviors: 1) cooperating with adults, 2) requesting (manding), 3) motor imitation, 4) vocal play, 5) vocal imitation (echoic), 6) matching-to-sample, 7) receptive language, 8) labeling (tacting), 9) receptive identification by function, feature and class (RFFC), 10) conversations (intraverbal), 11) letters and numbers, and 12) social interaction.

A child’s performance is rated in each area relative to five behaviorally defined proficiency levels. A form is provided to document the ratings and to profile the child’s repertoire. Intervention goals are selected in consideration of the profile. Five model profiles are provided to illustrate the translation of performance patterns to IEP Objectives. Also included are guidelines for the selection of an appropriate communication modality (e.g., speech, sign language, picture system). While the long-range focus remains on speech for all children, augmentative systems are recommended as a supportive interim step for some.

The second division (chapters 5-9) describes specific procedures and a curriculum for establishing early language skills in nonverbal children. Specific procedures are described for establishing rapport, requiring a response, establishing positive alternatives to negative behavior, and teaching a child to request ("mand training"). Mand training is the first form of direct language instruction in this protocol, and it is reinforced as the program progresses. Specific procedures for mand training vary depending on a child’s assessment profile.

Detailed instructional sequences are provided for four types of learners: 1) children who are non-echoic and non-imitative; 2) children who demonstrate imitative skills and are candidates for sign language; 3) children who demonstrate echoic skills and are candidates for vocal mand training; and 4) children with physical impairments who are candidates for learning a pointing response. The manual also provides guidelines for the selection of first words as mands, for establishing a mand through multiple prompts, for fading each prompt, for thinning the reinforcement, for expanding the mand repertoire, and for supporting the use of mands in the natural environment. This systematic approach to early mand training distinguishes the Sundberg and Partington approach from some behavioral approaches (e.g., Maurice, Green & Luce, 1996; Leaf & McEachin, 1999) but not others (e.g., Bondy, 1996).

A number of related language skills are targeted following initial mand training, including imitation, echoic responses, receptive discriminations, and matching-to-sample. Strategies are given to support the instruction of each related skill to learners with different profiles. Trials targeting these skills are interspersed systematically with mand trials, resulting in a "mixed verbal behavior" (aka "mixed VB") format. This is different from behavioral approaches that rely heavily on massed discrete trials during the early intervention phase.

Tact training and receptive identification of common objects are introduced concurrently following the successful acquisition of 5 to 10 mands and some success on related skills. Work in all areas continues and is interspersed with trials targeting tacts, thus continuing and expanding the mixed VB format. Again, different strategies for teaching each new skill are provided to accommodate learners using different communication modalities (e.g., speech, sign, picture exchange). Criteria are provided for the selection of specific words to expand the receptive and expressive repertoire. A sample vocabulary sequence for tact and receptive language training is provided to illustrate the selection criteria.

The identification of receptive [labels] by function, feature, and class (RFFC) is initiated following the acquisition of about 50 words in previous language training. Targets include only those items that the child can already tact and receptively discriminate. Specific examples are provided. Once the child can perform this skill with a large number of targets, the skill is brought into a mixed VB format.

The last set of targets included in the beginning language curriculum is intraverbal skills (e.g., word associations, word sequences, fill-in-the-blank items, etc.) These are introduced at about the same time as the RFFC targets. As with the other skill sets, the authors provide detailed behavioral descriptions of strategies for selecting and establishing initial intraverbal skills. Again, strategies vary depending on a child’s communication modality (speech, sign, pictures). Detailed shaping and fading procedures are also tailored to modality.

Division three (chapters 10-12) presents advanced language training as a continuation of the procedures and curriculum described in division two. The materials and procedures are considerably more complex than those involved in the first two levels. Here is a small sample of some of the skills targeted at this level: use of phrases, simple sentences, and more complex syntactic forms; use of language for describing experiences gained through different sensory modalities (e.g., touch, vision, hearing) and verbalization of private events (feelings); responses to a variety of Wh-questions; expansion of previously stated information; responses to a sequence of questions about a single topic; verbalization of event sequences; definition of words; narration of stories; description of current events; discussion of politics, and much more. The goal at this level is to develop fluency in the production and use of language adequate for a variety of social and academic functions.

Division four (Chapters 13-14) covers issues relevant to the implementation of a language program in a child’s home and in his/her school environment. Included here is a detailed comparison of discrete trial teaching (DTT) to natural environmental training (NET). When considered from within the conceptual framework of Skinner’s model, the authors indicate that each strategy supports a different aspect of verbal behavior. NET primarily benefits mand training while DTT primarily benefits tact, receptive, echoic, and imitating training. The importance of NET and DTT may also vary at different points in developmental time. NET may exert a greater influence during initial acquisition and peer social interaction while DTT may exert a greater influence on academic work.

Also covered in division four are characteristics of an effective educational program. Specific issues addressed under this umbrella are home-based ABA programs, intensive school-based programs, traditional special education classrooms, inclusion, procedures and checklist for evaluating potential programs. Included within the checklist is a consideration of staff philosophy, acknowledgement/use of basic behavior modification, augmentative communication, language analysis and teaching, the classroom environment, staff-student ratio, length of the instructional day, number of school days in the academic year, classroom’s daily schedule, physical layout of the classroom, parent education and involvement, skill acquisition data, and disruptive student behavior.

At the back of the book, there is an appendix providing important background information about Skinner’s (1957) model of Verbal Behavior, as well as information from more recent publications related to this model.

My personal reactions to this book are varied, with a net rating that is very positive. In their description of the program, I very much appreciated the authors’ care in tying aspects of the structure and process to the theoretical framework. This enabled me to develop a deeper understanding of the protocol. While operational definitions are expected in the world of ABA, I nevertheless appreciated the clear behavioral descriptions given for procedures that are often simply assumed (sometimes erroneously) to exist in the clinical repertoires of teachers and clinicians.

For example, there is an excellent description of the procedures for (and necessity of) establishing rapport with a child prior to the initiation of any assessment procedure. I also appreciated the discussions about alternative communication systems, DTT versus NET, and about guidelines for evaluating the appropriateness of an educational program. I assigned parts of this book as required reading for a graduate course that I taught last summer, because I think it’s the most detailed illustration of a behavioral language intervention protocol available and because evidence indicates that behavioral approaches are the most effective primary intervention for children on the autism spectrum.

Would I recommend this manual to the parent of a newly diagnosed child with autism? Probably not just yet, even though the child might very well be able to benefit from the program it describes. Although there is a great deal of redundancy across the pages, the jargon (while justified) is not necessarily reader friendly. Also, some of the information was difficult to assimilate from this text alone. The authors made frequent reference to their companion publications (the ABLLS Assessment, Curriculum Guide, and Skills Tracking System for Children with Autism and Other Developmental Disabilities and The ABLLS Scoring Instructions and IEP Development Guide) for more detailed information and more specific guidance regarding the assessment tool and the curriculum. These additional sources do help to clarify the picture.

Finally, while one of the hats that I wear is behavioral, the other hat is that of a speech-language pathologist. In that role, I have additional reactions. First, some of the statements in Teaching Language to Children with Autism or Other Developmental Disabilities appeared simplistic. For example, in chapter 2 the authors state "the primary purpose of a language assessment should be to identify specific verbal deficits, and to serve as a guide for the development of an appropriate language intervention program for the individual being assessed."

In my opinion, the primary purpose of a language assessment is to answer the referral question, and the choice of an assessment protocol should be based on whether that protocol results in data that answers the question. When the information that is being requested is information about where and how to begin therapy, the Sundberg and Partington protocol will be a great asset. When information about developmental levels is sought, other approaches may be superior. This example, by itself, involves a simplification that is tangential to the overall focus of the book, but I offer it as an example of simplification patterns that occurred frequently in some parts of the book.

My second reaction as an SLP is that I do not understand why, during graduate school, I was not exposed to the Sundberg and Partington literature even once. Similarly, I do not understand the omission of relevant references from the SLP literature in Sundberg and Partington’s reference list. For example, Wetherby and Prizant (1996) developed a behavioral alternative to standardized assessments for the very same reasons that Sundberg and Partington did. Why wouldn’t that be mentioned? Wouldn’t it corroborate Sundberg and Partington’s reasoning? Where is the gremlin that makes professionals in related fields blind to each other? For the sake of children who would benefit from interdisciplinary collaboration, let’s communicate! Thanks to Connecticut FEAT for opening the doors.

(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. Dr. Koenig will be coming to Connecticut in January to do a workshop on using the Teach Me Language curriculum. See the CT FEAT web site for further details, as they become available.)

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FEAT of Oregon sponsored a wonderful conference earlier this year and recently has made available audio tapes of the various presentations. Here is a list of the tapes, together with ordering information:

901 Association for Science in Autism Treatment: Kathy Mannon and Joan Davin

902 How To Tell When You're Being Had: 26 Danger Signs: John Jacobson, Ph.D.

903 School Age: Assessing Skills and Designing Interventions: John McEachin, Ph.D.

904 Adolescents: Preparing for Adult Life: Peter Gerhardt, Ed.D.

905 Productive and Non-Productive Child-Caregiver Interaction: Martin Kozoff, Ph.D.

906 Recent Developments in Autism Research: Tristram Smith, Ph.D.

907 Cost-Benefit Analysis of Autism Intervention: James Mulick, Ph.D., and John Jacobson, Ph.D.

908 The Role of Parents: Martin Kozloff, Ph.D.

909 How to be An Effective Advocate for Your Child: Gary Mayerson, Esq.

910 Finicky Eating: Tom Linschied, Ph.D.

911 Functional Analysis: Why Do You Need It?: James Mulick, Ph.D.

912 Resources and Related Service: How to Get What You Need: Jan Blacher, Ph.D.

You can order any or all of these tapes by calling: Edicrafts at 1-800-883-9929. Each tape costs $7.50, with a discounted price of $70. for the full set. Shipping is $2.00 for first tape and $.50 for each additional tape, and $5.00 for the entire set.

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Fall is often a time of transition for the families served by CT FEAT: new school routines, new staff training, new goals, new challenges. Fittingly, this fall is also a time of transition for CT FEAT. As the new President of CT FEAT, I’d like to fill you in on some of our organizational changes.

As of our June 24 Annual Meeting, our founding President finished her term. Anyone who knows anything about the history of CT FEAT knows that EC’s energy, intelligence, passion, and commitment have been among the most important factors in our growth from a small gathering of parents into one of Connecticut’s most vital sources of support and information for families touched by autism spectrum disorders. Fortunately for us, she remains an active member of the CT FEAT board and will serve a term as Vice-President (with a promise of lots of help to the new President!).

Thanks are due to Julie Augeri and Duane Jones, two more of CT FEAT’s founders, who have now departed from the CT FEAT Board of Directors. Both of them provided essential energy and insight during the formative first two years of CT FEAT’s history. In addition to Beth Curry, Lynette Borkowski, Rich Irwin, and Peter Ohring, and I have been elected to another two-year term on the Board. Leslie Perkins continues in the second year of her term. Peter Ohring will continue as our able and steady Treasurer. Rich Irwin assumes the office of Secretary.

We are pleased to welcome two new members to the board. Sue Frost Bennett, who has done extensive work on the CT FEAT Hotline, will now serve as an "official" member of the Board of Directors. Kajsa Mascolo, another active and experienced parent, was also elected to the Board. Kajsa has already assumed a large share of the Hotline responsibilities.

This fall, in addition to this information-filled newsletter, we expect to roll out an expanded and revised edition of our very popular CT FEAT web site (www.ctfeat.org). We are also considering several longer term organizational goals. I look forward to sharing more information with you in future issues of this newsletter.

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(Sue Frost Bennett)

In Connecticut, many children with special educational needs receive services through their local Regional Educational Service Center (RESC), which is supported by local, state, federal and private funding. Connecticut law has authorized the establishment of six centers which are located in the counties of: Hartford, Fairfield, Litchfield, New Haven, New London, and Windham. (See address and contact information below.)

These agencies principally serve the regions in which they are located, but some also provide services to school districts outside their local region. For example, if a school system's local RESC doesn't provide a desired service, that school may contract with another RESC to obtain it. While at least one other RESC (LEARN in Old Lyme) is known to be developing an intensive behavioral intervention program based on Applied Behavior Analysis (ABA), the only RESC currently offering such services is the Capitol Region Education Council (CREC), through its "River Street Autism Program." Though CREC usually serves the Greater Hartford area, it also provides school-based and home-based ABA services in towns throughout the state. (See the CT FEAT article "ABA Professionals Available to Consult With Connecticut Families and School Systems" for more information.)

Other RESCs may offer "behavioral" services, but the individuals delivering these services typically do not have the extensive training, supervision, and clinical experience necessary to provide an intensive behavioral intervention program. Most commonly, these programs are using ABA techniques for the purposes of reducing problematic behaviors - an important and legitimate use of ABA, but not to be confused with an intensive individualized behavioral program for teaching positive behaviors, such as language, play, social, and academic skills.

The legislative purpose in establishing the RESC system was to promote cooperation among school districts so that they could develop specialized educational services that would be too costly or inefficient for an individual school to provide. While the RESCs were created by state statute, the individual centers were established by the boards of education in the local towns that they serve. Each participating town appoints a member to the governing board of their local RESC and pays an annual fee towards its support. Usually, a town's special education director is the one who arranges for a child to participate in programs and services offered by the local RESC.

To find out which RESC your town participates in, call your local board of education or the RESC(s) closest to you. Connecticut’s six RESCs are listed below:

Capitol Region Education Council (CREC)

Ms. Marcia B. Yulo, Executive Director

111 Charter Oak Avenue

Hartford, CT 06106-1912

(860) 247-2732

(860) 246-3304 FAX

e-mail: myulo@crec.org

web site: www.crec.k12.ct.us

River Street Autism Program

Dr. Kathleen Dyer, Clinical Supervisor

Ms. Erica Roest, Program Supervisor

(860) 298-9079

(860) 298-8413 FAX

e-mail: Riverstsch.aol.com

web site: www.crec.org/programs/studs/rss/autism_program.html

Eastern Connecticut Regional Educational Service Center (EASTCONN)

Mr. David J. Calchera, Executive Director

376 Hartford Turnpike

Hampton, CT 06247

(860) 455-0707

(860) 455-0691 FAX

e-mail: dcalcher@eastconn.k12.ct.us

web site: www.eastconn.k12.ct.us

Education Connection

Dr. Jane Tedder, Executive Director

355 Goshen Road

P.O. Box 909

Litchfield, CT 06759-0909

(860) 567-0863

(860) 567-3381 FAX

e-mail: tedder@educationconnection.k12.ct.us

web site: www.educationconnection.k12.ct.us

LEARN

Dr. Virginia Seccombe, Executive Director

44 Hatchett Hill Road

P.O. Box 805

Old Lyme, CT 06371

(860) 434-4800

(860) 434-4820 FAX

e-mail: vseccomb@learn.k12.ct.us

web site: www.learn.k12.ct.us

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(Katherine Lee)

At the recent LIFE (Lovaas Institute for Early Intervention) conference in Dallas, the LIFE staff emphasized the importance of having regular team meetings. I couldn't help but think again how difficult this can be, especially when parents are first starting out. For those of you who have someone hired to run your team meetings, some of the below may seem redundant. For those who are running their own, I hope these guidelines help. As always, these are things I've learned the hard way by making mistakes and continuing to try to improve:

 

1. Meetings should be scheduled, same day, same time, same rotation (every week, every two weeks, etc.) 

2. You should start on time, rewarding those who are punctual, not penalizing them by making them wait.

3. You should end on time, with a precise goal in mind. I believe these meetings should last no longer than 2 hours.

4. Prepare an agenda in advance, interviewing your therapists briefly a few days before the meeting on items that need to be included. Emergency items should be added before the meeting starts. This prevents running late.

5. One person must run the meetings. That person should be designated and respected. This person also needs to know how to time manage and how to diplomatically handle various personalities.

6. Team meetings should be attended by all therapists. A posted schedule of the meetings two months out assures that they will know their obligation.

7. The meetings should be consistent. Last minute cancellations devalue your meetings all together. At the same time, you must avoid deciding to have a meeting at the last minute, respecting your therapists’ lives and their need to plan. Meeting schedule changes must be provided to therapists at least a few days in advance. If you want your team to place a high value on your meetings, you must as well.

8. If you will be having live therapy with your child, do it early in the meeting. If it is at night, the child will deteriorate quickly if you wait.

9. Have baby sitting available for your children so you can attend the meeting.

10. Therapists must be alert, taking notes, and contributing to the meeting. This is really tough because these meetings are generally at night. But you must require this or your meetings will be wasted. Have a supply of caffeine beverages available for those who are drowsy. (Bend & Stretch, Reach for the Sky can also be an effective means for keeping therapists alert. In addition it will provide educational benefit for the child!)

11. Team participation management is critical. All team members need to be heard, but some talk more than others. The person running your meetings has to know how to gently quiet those who talk to much and encourage those who are silent.

12. There is no room for conflict at team meetings. If this disruption occurs, the individual(s) involved need to be talked to privately about the goals of the meeting. If the conflict continues, further discussion and direction need to be given.

13. Team meetings should be a positive, team building experience, promoting unity and love for the child. Every effort should be made to establish this.

I saved this next part for last because it is a little hard for parents to realize these meetings are tough on therapists. You should make them as brief as possible, letting them get back to their lives ASAP. I've had therapist after therapist tell me how difficult it is on them to have long team meetings night after night (most therapists work with more than one family). Most times, these meetings are at our houses, so we forget that they have a 30 minute drive ahead of them, getting them home at 10 p.m. and many have to be at work at 7 a.m. It can be the final straw that burns them out. If you are a person who likes meetings, you must remember that most people don't. Make the meetings as short and straight forward as possible and avoid items that are not on your agenda. When the meeting is over, LET THEM GO HOME!

About 9 months ago, I decided I should be the one to drive to team meetings so now the team meets at a therapist's house. Believe you me, I run that meeting tighter now that I am the one driving home 30 minutes!

Although I’d had lots of experience running meetings, when we first started our program 4 years ago, I’ll be blunt, I was lousy at running my son's team meetings. I’ve had to learn more people skills to do it. Poll your team continually to find out what you can do to improve. And remember, if you are not having team meetings, you must. It is critical to your child's progress. Regularly scheduled meetings are imperative to the success of any child’s program!

(Note: Katherine Lee is a parent who wrote this article for the June/July edition of the newsletter published by FEAT North Texas (FEAT-NT). It is reprinted here with permission.)

 The Connecticut Center for Child Development (CCCD) recently moved from its former location in Fairfield to a new facility located at 925 Bridgeport Avenue in Milford, Connecticut. The school began its first full school year at its new location in September.

Last year, CCCD had purchased the old "Gingham’s building," which had been vacant for ten years. Building renovations were completed this past spring This new facility enables the school to increase its enrollment of young children with autism and related disorders and to substantially enhance the quality of training provided to teachers interested in working with children with these disorders. In addition, the school now will be able to start an early intervention program for children under the age of three.

Established in 1995, CCCD is a nonprofit organization dedicated to improving the lives of children with autism by providing educational opportunities utilizing established, empirically validated teaching strategies. CCCD operates both a private school for school age children with autism, and a home-based early intervention program for children under the age of three. CCCD and the Department of Behavior Analysis at the University of North Texas (UNT) are collaborating to offer a Master of Science degree in Behavior Analysis on site at CCCD.

To help raise money for its programs, CCCD will be holding a fundraiser on October 10, 1999 at 1:00 p.m. in Stamford, Connecticut. For more information, or to attend a visitor’s day program at the school, contact Beth Thompson at (203) 882-8810.

 The River Street Autism Program has acquired space in Hartford for two new ABA classrooms. The classrooms are currently under construction, and are expected to be finished later in the fall. Initial enrollment will be for children with autism/PDD who are 5-8 years old.

The school plans to incorporate "the best" of what is known about effective treatment for children with autism. Intervention will be provided through one-to-one instruction using the principles of Applied Behavior Analysis (ABA). Discrete trial teaching will be used in the initial acquisition of skills, with a strong emphasis on generalization of skills to more natural environments.

Transitional programming will focus on preparing the student to function more independently in the community and in inclusion school settings. Family participation will be a strong component of this program, with emphasis on parent input during scheduled reviews. The program also will provide support services for generalization of skills to the home.

For more information about the River Street Autism Program and its services, you can write to 601 River Street, Windsor, CT 06095, or call (860) 298-9079, or visit www.crec.org/programs/studs/rss/rss/autism_program.html.

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The Connecticut Center for Child Development (CCCD), a private school which uses instructional methods based on the principles of Applied Behavior Analysis (ABA), shortly will be commencing a 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 new facility in Milford, Connecticut. Seating is limited and early reservation is 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:

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 care givers 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.

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

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

(Lynette Rorer)

In the beginning, when my daughter Reagan needed a ton of prompting to interact with children, playdates were very much like therapy. We would bring in a typical child for thirty minutes or so. We would usually do an activity like Lego’s or pattern blocks (any kind of manipulative where we could work on prompting conversation as they played) for about five to ten minutes. We would have them color for a few minutes because that was a great way to stimulate statement-statement type conversations. We always had them eat a snack and Reagan had to ask the peer for her snack, allowing more prompted conversation to take place. Simon Says was a great game to play while we were working on generalizing peer imitation. A portion of the playdate was always spent on gross motor activities.

In the early playdate phase, we used immediate reinforcement. All children received candy intermittently. The peer children thought this was great. We have been fortunate to keep most of these peers available for playdates and over time we have faded out immediate reinforcement.

When Reagan’s play-skills and social skills had improved, we started to use a token system for reinforcement. She earned tokens throughout the playdate but we did not make big deal of it. The board was visible and we got her attention before we placed the tokens, then after the peers left we went over the highlights of the session: "You did so great with Devon on the swings!" We also discussed the not so great: "Remember when your friends wanted to play red light - green light and you wouldn't stop playing dolls?" In other aspects of our program, we were doing social stories and role plays. Therefore, we would write stories corresponding to troublesome behavior we observed during playdates. Then we would role play with the doll house figures or puppets.

The later playdates were longer, up to two hours, and continued to followed the same type of structure. Reagan and the peers were never left to "just play" until Reagan was showing us that she could manage independently playing with other children. Instead activities were planned and sessions structured in about fifteen minute intervals. We included a board game, an art activity like play dough or painting, a snack, a gross motor activity like practicing soccer skills, riding bikes or throwing baskets. After the gross motor activity, we would come back in and listen to a story and the kids would answer questions about the story. Prompting in this stage was more subtle and faded out gradually.

In the beginning, the peers knew Reagan was "different" and not that much fun to play with. Therefore, they understood when we explained the need for them to "help Reagan learn to play." Today, these same kids really consider Reagan to be a friend. They seem to have forgotten the early days.

Currently, we still have two afternoon playgroups in our home with three other little girls. I think this has been a critical link to her social success. The therapist who supervises the playgroup still devotes part of the time to "school skills" and the other part (about half and half) to free play. After the other girls go home, the therapist and Reagan spend about thirty minutes praising the good stuff and discussing the bad.

Tips for success:

 

• Be sure your child is ready for playdates!

   

• Work on generalizing conversation.

   

• Give your child exposure to peers without placing demands, prior to getting "serious."

   

• Practice the skills they will be using in the playdate: cutting, coloring, gluing, drawing, etc., and the gross motor skills. You don't want your child fighting the activity, as well as the social situation.

   

• Make the peer feel REALLY special!

   

• Keep things moving. Don't stick with any one activity too long (unless great things that you have been working toward are just happening and it's all coming together.)

   

• Trust your instincts.

   

All lectures will be held in the River Street School Gymnasium from 9:00 a.m. to 12:00 p.m.

There is no charge for parents of children with autism.

Cost for professionals is $15.00 in advance

and $20.00 at the door.

Coffee and bagels will be provided.

Saturday, March 18, 2000 - "Can We Talk?: Socialization for Friends and Family Members"
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.

Saturday, May 13, 2000 - "It’s Potty Time: Toilet Training the Child with Autism"
Presented by: TBA

Saturday, July 15, 2000 - "Surviving the Summer: Tips for Leisure Activities"
Presented by: Rebecca Ludlow, B.A.

Saturday, March 18, 2000 - "Can We Talk?: Socialization for Friends and Family Members"
Presented by: Stasia Hansen, B.A. and Gayle Martino, M.S.

Saturday, May 13, 2000 - "It’s Potty Time: Toilet Training the Child with Autism"
Presented by: TBA

Saturday, July 15, 2000 - "Surviving the Summer: Tips for Leisure Activities"
Presented by: Rebecca Ludlow, B.A.