As the coordinator for the CT FEAT Hotline, I’ve spoken with hundreds of parents and professionals. Those conversations have left me very concerned about the paucity of autism services available in Connecticut.

So when I heard that the New Jersey-based Eden Institute was holding a conference focused on Autism Services in Connecticut, I eagerly signed up.

In particular, I hoped to come away with a better understanding of why our state compares so unfavorably with other nearby states - like Massachusetts, Rhode Island, New Jersey and Pennsylvania - when it comes to the availability of ABA-based services.

The conference took place on September 28, 2000, at Eden’s Wawa Education and Retreat Center in Chaplin--a beautiful (and remote!) setting in northeast CT. This lovely facility also is used for summer vacation programs for Eden clients.

Most of the approximately 50 people in attendance were administrators and staff from school systems and early intervention programs.

I had the pleasure of sitting with a wonderfully devoted Birth to Three worker. I also enjoyed meeting David Cormier, who recently has been named as the new autism consultant at the Special Education Resource Center (SERC) - a position that four different people have held over the last four years.

The conference featured five presenters:

1) David L. Holmes, Ed.D., the founding director of the Eden Family of Services (based in Princeton, NJ);

2) Deborah Richards, MS, CCC, a Regional Manager for the CT Birth to Three System;

3) Roger D. Frant, Ph.D., an educational consultant with the Bureau of Special Education and Pupil Services for the state of CT;

4) Diane Twachtman-Cullen, Ph.D., CCC-SLP, an autism consultant; and

5) Michael Powers, Psy.D., a pediatric psychologist specializing in the diagnosis, evaluation, and treatment of individuals with autism and related disabilities.

Roger Frant and Deborah Richards joined together in making the keynote address "Autism Services in Connecticut." Frant has compiled data indicating that the prevalence rate of autism in CT is increasing. Currently, approximately one out of every 530 students in grades K-12 has a diagnosis of autism.

Frant discussed the difficulties inherent in compiling reliable data. For example, until the age of six, children don’t need to have any specific diagnostic label to be eligible for services. Hence, many parents and schools prefer to leave the child "unlabeled" until that time. There also is the increasing phenomenon of older children being diagnosed with Autism Spectrum Disorders (ASD) after previously being categorized under some nonspecific learning disability.

Frant also talked about the need for better quality services in CT and some of the steps that SERC is taking to increase training opportunities. These include sponsorship of the "Focus on Autism" series (see page 14) and facilitating some "consortium" trainings.

These consortium trainings involve several towns coming together to undertake a more in-depth kind of training than the more customary one-day workshop. For example, University of Kansas autism consultant Brenda Smith Myles, who specializes in Asperger’s syndrome and older children, recently conducted a six-session training with the towns of Hartford, Cromwell, Wallingford and Simsbury. Each town sent eight staff persons to the training.

    I was relieved to learn that SERC has decided against reissuing the outdated Report of the Connecticut Task Force on Issues for the Education of Children With Autism (hereafter referred to as the Report).

It’s true that the Report has a good section describing the eight essential components of an appropriate education: earliest involvement; parent involvement; a focus on social interaction and communication; intensive programming of at least 25-30 hours per week; direct teaching within a structured setting; programming for generalization; specifically trained personnel; and planned integration with typical peers. According to Frant, this information has provided judges in due process cases with good guidance about the educational needs of this population.

Another virtue of the Report is that it alerted schools to the need for more intensive services, not only during the regular school year but also for extended services during the summer.

However, the rest of the Report is replete with educational recommendations that disregard scientific evidentiary standards. Connecticut clearly needs a more balanced and scientific report, like those recently produced by the states of New York and Maine.

The CT Birth to Three System, which is comprised of 39 separate providers, annually services approximately 7,000 children with a variety of developmental problems.

I was especially pleased to learn that Birth to Three has begun to move in the direction of encouraging parents to have their child diagnosed. Until recently, their policy was to tell parents that an ASD diagnosis would have no impact on the services available.

Now there is greater appreciation of the importance of the earliest possible diagnosis. According to Deborah Richards, "it’s an ethical responsibility" for service providers to tell parents what the symptoms mean.

To that end, some Birth to Three programs have begun using the Modified Checklist for Autism in Toddlers (M-CHAT), developed by Dr. Marianne Barton and her colleagues at the University of Connecticut. The M-CHAT is designed to detect autism as early as 18 months. (See the Spring/Summer 2000 edition of the CT FEAT Newsletter for more information about the M-CHAT.)

Birth to Three has come to recognize that children with ASD need, in Richard’s words, more "intensive engagement." Practically speaking, this means that ASD clients are more likely to receive 15 to 20 hours of services, rather than the 3 to 5 hours that is typical for non-ASD clients.

The transition into the local school system at age three can be fraught with difficulty. Often the children scarcely have begun treatment with one provider when they are obliged to adjust to another. Both Michael Powers and Deborah Richards agreed that young children would be better served by a "Birth to Six" system, such as exists in some other states.

Birth to Three and Floor Time

I was somewhat concerned to realize, from Richard’s remarks, the extent to which a strong bias in favor of Stanley Greenspan’s "Floor Time" (also known as the "Developmental, Individual Difference Relationship" or "DIR" model) continues to exist at Birth to Three. While Richards recognizes that some component of ABA should be used with all ASD children, she believes that the Greenspan model "makes sense."

As I have learned from the numerous parents with whom I’ve spoken over the years, most of the Birth to Three providers tend to have a "play therapy" kind of background. This evidently inclines them strongly towards the Greenspan model, which fits better with their existing skills than would an ABA-based model. It also doesn’t require them to undergo extensive retraining.

Picking up on a theme alluded to by other speakers, Michael Powers talked about some of the disincentives that school systems encounter when they undertake setting up good ABA programs. The biggest problems are budgetary ones.

While it’s true that the state reimburses the towns for some portion of their special education expenses, this money is not designated as "education" money. In most of Connecticut’s 169 towns, this money goes into the town’s general funds - i.e. it’s not specifically targeted for the education budget.

Parents might want to consider lobbying their town governments to change this system, as a few towns have done, so that the money goes directly back to the education budget.

Another problem faced by towns offering ABA programs is the prospect that families may relocate to them for the specific purpose of obtaining services. This can drive up costs and jeopardize the political will to continue making the expenditures necessary to provide quality services.

With his usual eloquence, Powers spoke movingly about the special difficulties faced by many urban school districts. These areas are especially lacking in appropriate services for ASD children. Powers suggested that some sort of "Head Start" program for the youngest children might be in order.

According to Powers, the extraordinary dearth of qualified ABA consultants located in Connecticut has made us overly reliant on out-of-state consultants. And, in the absence of a recognized credentialing standard for autism professionals, school administrators and parents find it difficult to distinguish those who are competent from those who are not.

Powers would like to see the development of a statewide, competency-based training model. Such a model would emphasize performance feedback training and mentoring.

David Holmes on the Eden Model

When it comes to the availability of ABA services, New Jersey today appears to be a veritable paradise compared to Connecticut. But that was not always the case. Twenty-five years ago, when David Holmes founded the Eden Institute, New Jersey suffered from the same kind of service scarcity that prevails in Connecticut today.

Evidently, part of the purpose of the "Eden Lecture Series on Autism" is to raise Eden’s profile in CT and make Connecticut school systems aware of its availability as a service provider.

Eden’s special focus appears to be on the more severely impaired end of the autism spectrum, for which they have developed their unique model of "life span services." For this population, Holmes "starts planning for a child’s vocational training from the age of 18 months." However, he usually does not share his thoughts about the child’s prospects with the "mommies and daddies" because it’s such a "fragile time" for them. Holmes also indicated that he thought that "center-based" programs were better than "home-based" ones for the kind of student typically served by Eden.

There are many differences between the kind of "ABA program" offered by Eden and the kind described in the Lovaas research (see Lovaas on Lovaas on pages 2-4.)

Unlike the Lovaas model, which is always home-based, the Eden model is implemented in "centers" (e.g. classrooms). Eden’s services are also much less intensive - less than half of the hours provided in a Lovaas program.  Not surprisingly, given these perceptions about its students’ abilities, Eden’s goals are much less ambitious. You can read more about the model in Holmes’ book, Autism Through the Lifespan: The Eden Model (1998).

Diane Twachtman-Cullen presented some common sense, and generally widely accepted, observations about the goals of inclusive education and the "best practices" involved in achieving them.

She also alluded to her well-known role as an "expert witness" for school systems in some recent due process cases. Twachtman-Cullen stated that she didn’t "much like due process cases," despite her frequent involvement in them.

Twachtman-Cullen also described her various books, all of which she had brought with her to sell.

Parental Perspective

In some states, like Pennsylvania, the state Department of Education has taken a major leadership role in developing the availability of ABA-based services in the school systems. Unfortunately, I can’t say that our state’s department appears ready to address vigorously this critical need.

Connecticut needs to develop a locally based professional class with the education, training, and supervised clinical experience necessary to deliver bona fide ABA programs. CT’s Department of Education could and should play an important role in achieving this.

There are lots of good ideas out there, generated by people like Dr. Powers, and some successful state models to look at. But more political momentum will be required to make the kind of profound changes that are needed. And that momentum will have to come, most of all, from the parent community. v

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Using Applied Behavior Analysis (ABA) and discrete trial training methodology, the Locust Street program provides intensive school-based programming to those students who can’t take advantage of a home-based program, or who may be transitioning out of a home-based setting prior to entering a local school.

Clinical supervision is provided by Kathy Dyer, Ph.D., CCC-SLP, BCBA (Board Certified Behavior Analyst), a noted expert in the field of autism. Instruction is provided by trained therapists under the direction of Certified Special Education Teachers. Curriculum supervision is provided by Erica Roest , M.Ed., Program Director of the River Street Autism Program.

  This intensive intervention program is highly individualized and can be crafted to meet the requirements of an IEP with respect to length of day (up to 8 hours) and length of year (240+ days). Combination programs blending on-site and home-based instruction also are available.

On January 5 & 6, 2001, Vincent Carbone, Ed.D. will present his popular two-day workshop on teaching verbal language to children and adults with autism. This much anticipated event will take place at the Radisson Hotel in Cromwell, Connecticut.

Carbone has been in great demand on the conference circuit during this past year. He gets very positive word-of-mouth for both his presentation style and his content. Conference goers report that he is a lively, entertaining presenter who makes great use of video clips.

Participants in the workshop will learn:

1. to conduct a Behavioral Language Assessment;
2. to select the most appropriate form of communication for a child or adult (vocal, signing, pointing to or exchanging pictures, or activating an augmentative device); and
3. to select the communication responses and supporting skills that should be taught first.

The workshop will include the recommended teaching procedures for children who have no formal communication skills to children who are near conversational speakers.

Carbone has over 25 years of experience designing programs for persons with developmental disabilities. He is a Florida Certified Behavior Analyst whose behavior analytic research has been published in several peer-reviewed journals.

His research and clinical expertise is in the area of functional assessment and implementation of teaching programs for persons with autism. He has a special emphasis upon teaching verbal behavior to the most difficult to instruct learners.

The DTT-NET Methodology

Carbone promotes the teaching methods developed by his fellow behavior analysts, James Partington, Ph.D, and Mark Sundberg, Ph.D. These methods are based on the work of noted behaviorist B.F. Skinner.

This methodology has been referred to as "discrete trial training, natural environment teaching" (dtt-net). The focus is on the use of intensive discrete trial training but in a more naturalistic setting, with more natural presentations and using more naturalistic reinforcers.

Since some of their material is quite technical, Sundberg and Partington frequently conduct workshops to train people to use the specialized instruments and techniques they have developed.

Carbone’s workshops also train people to use the Sundberg and Partington manual. In addition, he provides his own set of "guided notes."

A description of the one-day version of Carbone’s workshop appeared in the Spring/Summer 2000 edition of this newsletter (available online) and provides some preview of what you can expect.

LECTURE SERIES

The Connecticut Center for Child Development (CCCD) will be offering another in its popular series of free lectures on educating children with autism and related disabilities. The upcoming series will begin in January of 2001, and run until June.

To make reservations, call Holly Sickles at (203) 882-8810, extension 10. Due to space limitations, please notify CCCD of cancellations as early as possible so that others can be accommodated.

• January 17, 2001, 7:00 P.M.

  Lecture #1: Applied Behavior Analysis: What It Is And Is Not

  Jodi Mazaleski M.S., CBA and

  Patricia Fitzsimons M.S., CBA

• February 7, 2001, 7:00 P.M.

  Lecture #2: Teaching Children to Follow Instructions

  Patricia Fitzsimons M.S., CBA

• February 28, 2001, 7:00 P.M.

  Lecture #3: Developing Problem Solving Skills & Increasing Language During Play

  Jodi Mazaleski M.S., CBA; and

  Customizing Systems of Reinforcement

  Heather Cramer, CABA

• March 21, 2001, 7:00 P.M.

  Lecture #4: Increasing Spontaneous Language

  Patricia Fitzsimons M.S., CBA and

  Leslie Michniewicz M.S., CBA

• April 11, 2001, 7:00 P.M.

  Lecture #5: Visitor’s Day at Night

  Jan Calabro M.S., and Cresse Snyder

• May 2, 2001, 7:00 P.M.

  Lecture #6: Utilizing Behavioral Strategies at Home & in the Community

  Judy Palazzo M.S., and Suzanne Letso

• June 6, 2001, 7:00 P.M.

  Lecture #7: Using Augmentative Communication Systems

  Christine Pornper M.A., CCC-SLP and

  Judy Palazzo M.S. v

   

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FACING AUTISM, WITH LYNN HAMILTON (Book Review by B.C.)

Lynn Hamilton has written the book that she wishes had been available five years ago, when her son was diagnosed with autism.

In Facing Autism: Giving Parents Reasons for Hope and Guidance for Help, Hamilton navigates the bewildering array of popular autism treatments - providing comprehensive descriptions of everything from Applied Behavior Analysis (ABA) to secretin.

She explains the theories underlying these interventions and provides practical information regarding how to pursue them: e.g. the names of laboratories that conduct certain kinds of medical testing; recommended cook books for implementing the gluten-free/casein-free (G-F/C-F) diet, etc.

Even where her child didn’t derive any obvious benefit from a treatment (as with Auditory Integration Training - AIT), she remains open minded about its possible benefit for others. In assessing the possible worth of most treatments, she relies heavily on the anecdotal reports (positive or negative) of other parents, as well as her own child’s experience.

One of Hamilton’s principal sources for the book is psychologist Bernard Rimland, director of the Autism Research Institute (ARI). According to Hamilton, contacting the ARI is one of the "first ten things" parents should do following diagnosis.

Rimland is similarly enthusiastic about Hamilton, stating in a promotional blurb for the book that "If you can only buy one guidebook on autism, Facing Autism is the one to get!"

The Importance of Applied Behavior Analysis

Despite her enthusiasm for such a wide array of treatments, Hamilton emphasizes that ABA played the most important role in her son’s treatment. "I credit ABA for the majority of Ryan’s dramatic improvement." Her chapter on ABA is practical, informative and well written.

In her emphasis on the importance of ABA, Hamilton quotes Victoria Beck, a parent who is widely credited with discovering the potential benefit of secretin treatment for some children with autism and gastrointestinal disease. In addition to his secretin infusions, Beck’s son received 35 hours per week of "excellent ABA therapy." "Without the ABA education, even the secretin would not allow him to be the spontaneous, joyful, and bright child that he is."

According to Hamilton, "Some parents shy away from the long-haul approach of ABA, opting instead for the minute chance their child will experience a miraculous recovery with some obscure treatment." Hamilton stresses that, whatever additional treatments you may pursue for your child, it’s essential to have a good quality ABA program in place.

A Message of Hope

Parents will be buoyed by Hamilton’s positive "can do" attitude. It’s a welcome contrast to the negative tone of too many autism guides, such as Charles Hart’s depressing A Parent’s Guide to Autism (1993).

No doubt, her familiarity with Hart’s grim book made her recognize the need for a better "parent’s guide." She recalls her dismay at reading Hart, who "compared behavioral programs with horse training, with therapists yelling at the children or spraying them in the face with water."

One shortcoming of Hamilton’s book is its failure to empha-size the experimental nature of many of the therapies that she en-dorses.

To take just one example, there is no scientific basis for the sweeping claim that "most of us can expect to see positive results" from the G-F/C-F diet. Most of the "symptoms" allegedly caused by gluten and casein - such as a strong desire for a narrow range of preferred foods, appearing "spaced out," sleeping problems, sound sensitivity, and temper tantrums - are common among children on the autism spectrum, regardless of whether they have any food allergies.

Though promoted by Bernard Rimland and a small group of medical doctors, only a very tiny minority within the medical community endorses these practices.

Rimland’s continued support for AIT, despite the findings in various controlled studies that it has no effect, suggests that he may not attach a lot of importance to scientific validation. Nonetheless, it is incumbent upon the DAN enthusiasts to continue to develop the protocol, with an emphasis on controlled trials and publications in peer-reviewed journals.

The Lovaas research demonstrates what many of us know from our personal experience: that a sizeable minority of children can attain normal functioning without any dietary or biological interventions. But as Lovaas colleague Tristam Smith wrote in a recent survey of treatment research:

Because autism is biological in origin, learning-based interventions, which are now the mainstay of treatment, will sooner or later need to be integrated with findings in biomedical research....children who [remain autistic] despite receiving the best available treatment may constitute a more homogeneous sample for studying associated biomedical problems than would a general group of children with autism.

Parents whose children fail to progress satisfactorily can hardly be blamed for leaving no stone unturned. It may ultimately be proven that some of these treatments help some subset of children. We can only hope so.

But one worries that the amount of time, effort and expense involved with some of these treatments may detract from the family’s focus on providing a high quality behavioral intervention program. Even under the best of circumstances, implementing such a program can be very challenging and demanding.

Of course, this evidently wasn’t a problem for the ever buoyant and energetic Hamilton. She not only pursued just about every imaginable treatment. She even managed to write a wonderful book about her experience. v

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The court found that early and intensive ABA is a "medically necessary" service that must be funded by the government. Its refusal to fund this treatment "discriminates against the petitioners…by failing to …[provide] effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioral intervention." (emphasis added)

Two Ways To Support CT FEAT (Mike Bennett, President)

 With this edition of the CT FEAT Newsletter, we continue our tradition of sharing timely, practical, and important informa- tion for parents of children with autism and related disorders.

Through this newsletter, which now reaches nearly 1000 parents and professionals, as well as through our other activities (e.g. telephone hotline, web site, listserv, parent meetings, information packet and special events), CT FEAT has reached hundreds of families with our message of hope.

Many parents express their appreciation for the work of CT FEAT and ask how they can support our organization. Here are two ways:

1. Make a contribution to our annual appeal.

In a short time, you will be receiving a letter asking for your support. Please give thoughtful consideration to the needs of CT FEAT and consider including us in your "end of year" charitable giving.

2. Support CT FEAT through the United Way

Many corporations, school systems and other organizations will sponsor United Way Campaign Drives. This presents a great opportunity for CT FEAT to receive more funding.

I would like to ask you to consider allocating all or some of your United Way donation to CT FEAT as well as asking friends and family (anywhere in the United States) to do the same.

The United Way will distribute pledge cards. On the pledge card you will be asked to make a contribution and given the option of directing your dollars to the United Way general fund or to a specific organization. CT FEAT is not listed on the pledge card but is eligible to receive your contribution. All you need to do is complete the card and write in CT FEAT as the organization you wish to receive your contribution. United Way will then forward your donation to CT FEAT.

Please write the following on the pledge card:

CT FEAT

P.O. Box 388

Ellington, CT 06029-0388

Phone (860) 571-3888

 

With your help, CT FEAT will have a sound financial base to continue future work to benefit you and our larger autism family. Thank you! v

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For the past few years, the State Department of Education’s Special Education Resource Center (SERC) has sponsored a series of workshops on "best practices" for educating children with autism. The target audience consists of educators and parents.

To obtain registration forms, or for further information about the series, you can call SERC at (860) 632-1485,or visit their web site at www.serc.rh.edu. v

   UCONN Recruiting  Research Participants

1. MRI STUDY OF ATTENTION: We need individuals on the PDD spectrum (adolescents or adults) with relatively high cognitive functioning to participate in a functional MRI study of attention. This study is being conducted at McLean Hospital near Boston, and pays $100.00 for a day’s participation. Participants will be given lots of time to get acclimated and comfortable with the scanner. Actual scanning takes an hour or less.

  2. MRI STUDY OF LANGUAGE: We need individuals on the PDD spectrum (adolescents or adults) with relatively high cognitive functioning to participate in a functional MRI study of language. This study is being conducted at the UCONN Medical Center in Farmington and pays $50.00 for a half-day study. Participants will be given lots of time to get acclimated and comfortable with the scanner. Actual scanning takes an hour or less.

3. COMPUTER GAME STUDY OF LANGUAGE: We need individuals on the PDD spectrum with a second grade reading comprehension level to participate in a study of language processing. Participation will involve playing some language computer games and taking some background tests of language and reading level (total time about 2 hours). This can be done in your home, the child’s school, or at UCONN.

4. STUDY OF EYE-BLINK RESPONSE: We need individuals on the PDD spectrum (ages 10-20) for a study of eye-blink response. This study is being conducted at Yale Medical Center and will pay $50.00 for a half-day. The actual study takes about 30 minutes and participants will also take some standardized tests for background.

5. STUDY OF OXYTOCIN: We need individuals on the PDD spectrum (ages 6-11) as well as typically developing children (ages 6-18) - can be friends or neighbors - to investigate oxytocin (a hormone and neurotransmitter) levels; these levels have previously been found to be too low in children with autism. This study will involve a blood draw, to be performed at the UCONN Medical Center in Farmington, as well as some standardized testing and interviewing of parents, and pays $20.00 to parents for travel and a $20.00 gift certificate to a toy store for the child. v

   CT FEAT WEB SITE

Have you checked out the CT FEAT web site (www.ctfreat.org) lately? If not, you’ll find some new material, including various ABA-related research articles and reports; new links to other recommended web sites; and updated information about ABA professionals available to work in Connecticut.

The New York State Association for Behavior Analysis (NYSABA) will be holding a one-day workshop, New Directions for Parents and Educators, on Friday, December 15, 2000 at the Crowne Plaza in White Plains, New York.  There will be many interesting speakers, including Lovaas colleague Tristam Smith on Intensive behavioral treatment: Implications of recent findings for service providers and families; and Randy Horowitz and Joanne Gerenser on Designing and implementing programming to enhance speech, language and communication skills. Other topics include Fluency and rate in instructional design, Strategies for effective inclusion collaboration, and Quality indicators in ABA services. The cost, with advanced registration by December 5th, is $50.00 for NYSABA members; $70.00 for non-members and $25.00 for nonprofessionals (e.g. parents). For more information, contact Dr. Thomas Zane at sta@abacuswave.com or visit the NYSABA's web site at www.nysaba.org or call (914) 965-1152. v

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The next meeting will take place on Sunday, January 28, 2001. The only requirement for participation is that parents agree to respect each other’s confidentiality. Please visit the CT FEAT web site (www.ctfeat.org), or call the CT FEAT Hotline (860-571-3888), to request directions, check for storm cancellations, or obtain further information. Also, please note that there is no child care available. v

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