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Newsletter - Reaching Potentials · Web viewPor otra parte, después de probar los genes de padres...

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Issue 24 January 2001 Reaching Potentials-Franklin Templeton plan for 2 nd annual fundraiser! Reaching Potentials, through the sponsorship of the Franklin Templeton Group is planning its second annual fundraiser to be held on Saturday, February 17, 2001 in Ft. Lauderdale, Florida. The fundraising event, which is strongly supported by the Wall Street community as well as many local South Floridians, provides revenue to promote the organizational efforts of Reaching Potentials and to establish the Wall Street Helping Hands Scholarship Fund. Through last year’s event, funds were generated to provide financial assistance for intervention efforts and organizational initiatives and supported scholarships at varying levels to seven children with autism and related disabilities. This year’s event will reflect an 80’s theme and the evening promises to be a fun-filled social event. The balmy South Florida weather and beautiful surroundings of the Las Olas Reaching Potentials, Inc. 2875 S Congress Ave., #H Delray Beach, FL 33445 P.O. Box 970161 Boca Raton, FL 33497 Ph: 561-274-3900 Fax: 561-274-3932 Ph: 954-321-7393 Fax: 954-321-1019 E-Mail: [email protected] http://www.reachingpotentials.org Board of Directors L. H. Colvin Angela Guarneri Cynthia Kleinfield-Hayes Danette M. Marks Mary Partin Professional Advisory Board Wendy Bellack (Family Network on Disabilities) Susan Johnson Conlin, M.Ed. Edward C. Fenske, MAT, Ed.S. (Princeton Child Development Institute) Sandra L. Harris, Ph.D. (Rutgers, The State University of New Jersey) Robin Parker, M.S. CCC-SLP (Nova Southeastern University) Roberto Tuchman, M.D. (Miami Children's Hospital Dan Marino Center) Jack Scott, Ph.D., CBA/e/fl (Florida Atlantic University) Staff Jean Hays Bachrach, Continues on Page 3 Corner 3 Direct Instruction 7 CARD Conference 8 Consider the Potato 10 RP Training Calendar 11 The History Inside This Issue HAPPY NEW YEAR Best Wishes for a happy healthy and prosperous New Year from all of us at Reaching Potentials!
Transcript
Page 1: Newsletter - Reaching Potentials · Web viewPor otra parte, después de probar los genes de padres y otros familiares de personas con autismo, los investigadores encontraron que los

Issue 24 January 2001

Reaching Potentials-Franklin Templeton plan for 2 nd annual fundraiser!

Reaching Potentials, through the sponsorship of the Franklin Templeton Group is planning its second annual fundraiser to be held on Saturday, Feb-ruary 17, 2001 in Ft. Lauderdale, Florida. The fundraising event, which is strongly supported by the Wall Street community as well as many local South Floridians, provides revenue to promote the organizational efforts of Reaching Potentials and to establish the Wall Street Helping Hands Schol-arship Fund. Through last year’s event, funds were generated to provide fi-nancial assistance for intervention efforts and organizational initiatives and supported scholarships at varying levels to seven children with autism and related disabilities.

This year’s event will reflect an 80’s theme and the evening promises to be a fun-filled social event. The balmy South Floridaweather and beautiful surroundings of the Las OlasBoulevard location will set the stage for a night toremember. So don your favorite 80’s garb and plan to come join us for an evening of good food, nostalgic music and great friends.

Reaching Potentials – Franklin Templeton Wall Street Helping Hands Fundraiser 2001February 17, 2001Ft. Lauderdale, FloridaDonation: $100.00

For reservations or additional information, please call us at 561-274-3900.

Reaching Potentials, Inc.2875 S Congress Ave., #HDelray Beach, FL 33445

P.O. Box 970161Boca Raton, FL 33497

Ph: 561-274-3900Fax: 561-274-3932

Ph: 954-321-7393Fax: 954-321-1019

E-Mail: [email protected]://www.reachingpotentials.org

Board of DirectorsL. H. Colvin

Angela GuarneriCynthia Kleinfield-Hayes

Danette M. MarksMary Partin

Professional Advisory BoardWendy Bellack

(Family Network on Disabilities)Susan Johnson Conlin, M.Ed.

Edward C. Fenske, MAT, Ed.S.(Princeton Child Development Institute)

Sandra L. Harris, Ph.D.(Rutgers, The State University of New Jersey)Robin Parker, M.S. CCC-SLP

(Nova Southeastern University)Roberto Tuchman, M.D.

(Miami Children's Hospital Dan Marino Center)

Jack Scott, Ph.D., CBA/e/fl(Florida Atlantic University)

Staff

Jean Hays Bachrach, MA ,CCC-SLP, BCBAMapy Chavez Brown, BA, BCABA

Pamela Gorski, BSRebekah Houck, BS, BCABA

Barbara Jamison, BALori MangenyCathy Opel, BA

Kelly Pellegrene, BAPatty Thomas-Shutt, Ph.D.

Continues on Page 3

2 Clinical Director’s Corner3 Direct Instruction 7 CARD Conference 8 Consider the Potato 10 RP Training Calendar 11 The History of the Vaccine 15 Research Abstracts Conferences18 Classifieds

Inside This Issue

HAPPY NEW YEAR

Best Wishes for a happyhealthy and prosperousNew Year from all of usat Reaching Potentials!

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Often when parents search for trainers or teaching assistants to staff their ABA home program for their children with autism, the most frequently asked question is “Where can I find them?” It is true that locating enough team members to do the day-to-day programming can be difficult. But, perhaps, a more important question that a parent might ask is “What qualities should I look for in potential trainers for my child?”

Much time, effort and finances are invested when training a new team member for an ABA home program. Many parents know the frustration of going through this training process, only to have team members who are frequently late or absent. Sometimes trainers quit after only a short time. Some trainers, even with intensive training, are not able to master the skills they need to teach a young child with autism. There are some things you can look for in a potential team member that you can see in your first few meetings.

Dr. Alan Schnee, a behavioral psychologist and supervisor of ABA home programs for children with autism, offers several suggestions and things to look for:

1) Is the potential team member on time for their first interview or meeting? Do they have to call and re-schedule several times? This should be an indicator of their ability to be on time and their seriousness about attendance;

2) How do they interact with your child on their first visit? Are they having fun and seem at ease?

3) Do they seem open to learning? Do they agree to abide by the methods the parent and supervisor have implemented?

4) Can they follow directions, both verbally and visually when you or your supervisor instructs them in basic ABA methods with your child?

5) Once the basics are learned, can the potential trainer apply principles to other situations? In other words, can they “think on their feet”?

In “Behavioral Intervention for Young Children with Autism”, Dr. Jack Scott offers this advice in his chapter entitled “Recruiting, Selecting and Training Teaching Assistants”:

1. Teaching Assistants need to understand the program objectives and be committed to helping the child make rapid progress;

2. They must relate to the child and find joy in his or her progress, while insisting that the child comply with the program;

3. They need to be able to act independently and interpret the program based on your child’s progress during a given session;

4. They must reinforce enthusiastically and effectively;5. You can assess many things about a potential assistant during the

initial phone call: Are they difficult or cranky? Are they too eager, willing to commit before they know everything involved?

6. Use your parental instincts to help prevent exposing your child to someone who is unqualified or ineffective;

7. Provide potential candidates with reading materials about ABA and ask them to call you when they have read it. This will help weed out people who are not really interested;

8. Interview carefully and explore any area that seems suspect or makes them uncomfortable;

9. Plan to select the most responsible, talented and caring individuals you can find.

CLINICAL DIRECTOR’S CORNER

BY: JEAN HAYS BACHRACH, MA, CCC-SLP, CBA/E/FL

Reaching Potentials and the

Scott & Sue Mellanby Foundation

announce scholarship

Through a generous grant from the Scott and Sue Mellanby Foundation, Reaching Potentials has established an annual scholarship grant which will be made available for training and consultations provided in connection with the implementation of intensive home based behavioral programs for children with autism and related disabilities.

Families interested in applying for the scholarship grant must be able to provide a minimum of 20 hours per week of discrete trial staffing.

APPLICATION DEADLINE HAS BEEN EXTENDED TO JANUARY 15, 2001.

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In the last five years since the founding of Reaching Potentials, our staff has supervised numerous ABA home programs and we often give this additional advice about what to look for in a therapist:

1. Look for someone who is willing to commit at least one year to your home program;

2. Require that those working with your child commit to work at least 2 to 3 two hour sessions per week. This will provide consistency for your child and allow the trainer to be familiar with changes that occur in your program;

3. Look for individuals who will agree to attend training classes and workshops about ABA and autism, which will increase their effectiveness in your program.

Above all, remember that you as a parent are the CEO of your child’s home program. Too often, the desperate need to try and provide a child with that magical 40 hours per week of instruction leads to the hiring of inadequate trainers. Your child’s progress depends on highly effective intensive instruction. This starts with a talented Behavior Analyst who will supervise your ABA program, but a program is only as good as the sum of its parts. Having qualified, dedicated, talented, enthusiastic trainers who will do the day-to-day programming with your child will help to ensure that your special child reaches his or her potential!

JOIN THE STAFFREACHING POTENTIALS

Reaching Potentials is currently seeking applications for therapists with experience in implementation of discrete trial programming for children with autism. Candidates must be available to travel and must have their own reliable transportation. Part-time and full-time positions available. We offer training and a competitive compensation package.

Interested candidates should forward a current resume/vita, together with salary history to: Pamela Gorski, Executive Director, Reaching Potentials, Inc. 2875 S. Congress Avenue, Suite H, Delray Beach, FL 33445. (Confidential submission may be sent via facsimile to 561-274-3932 or e-mail to [email protected].)

Behaviorism in Regular Education: Too Scientific

“Why isn’t behavioral analysis, which is effective for so many autistic students, not also used in regular education?”, is a question that sometimes comes up in discussions amongst parents of autistic children. Recent seemingly disparate events such as the selection of Dick Cheney as one of the vice-presidential nominees, along with the explosion of ABA in the schools due to the autism epidemic, may give rise to renewed interest in the subject. Dr. Joe Morrow is a behaviorist who runs an ABA-DTT school forautistic children in Sacramento. Bringing some of these new developments to our attention, Joe writes, “Thought you might find Lynne Cheney's (wife of Dick) article interesting. ‘Direct Instruction’ is Applied Behavioral Analysis-based. The second system she refers to without naming, Og Lindsley's Precision Teaching, is also ABA-based (that's the one that emphasizes fluency.) “We have known for a long time that the ‘educational establishment’ was opposed to using ABA for REGULAR education. And we have known about the suppression of the facts that Ms. Cheney mentions. We just never believed that powerful people cared about data. Hopefully, this signals a change.” This article By Lynne Cheney appeared in The Wall Street Journal on May 12, 1999.

Effective Education Squelched

After principal Eric Mahmoud introduced a new curriculum at Harvest Preparatory, a Minneapolis elementary school that serves many children from poor families, test scores shot up. Kindergartners, whose reading results had been at about the national average, were now in the 89th percentile. The new curriculum that proved so effective at Harvest Prep wasactually a venerable program with a remarkable record of success. It iscalled Direct Instruction, and if you haven't heard about it, the reason may be that the nation's education schools don't want you to. In their view, Direct Instruction is pedagogically incorrect. Direct Instruction teachers, operating from detailed scripts, tell kids what they need to know, rather than letting them discover it for themselves, as ed schools advise. Direct Instruction teachers drill students on lessons (a method education professors sneeringly call "drill and kill"). They reward right answers and immediately correct wrong ones, flying in the face of ed-school dogma downplaying the importance of accuracy. How well Direct Instruction works first became evident in 1977, when the results of Project Follow Through, a huge educational experiment undertaken by the federal government, were made public. Kindergartners through third-graders who were taught by Direct nstruction scored higher in reading and math than children in any other instructional model. The Direct Instruction children not only proved superior at academics, but also scored higher on "affective" measures like self-esteem than did children in most other programs -- several of which were specifically directed toward making children feel good about themselves. The acolytes of John Dewey and Jean Piaget immediately went on the attack. Spurred on by the Ford Foundation, one group declared in the Harvard Educational Review that it simply wasn't fair to judge a program according to how well it taught children to read and calculate.

Direct Instruction

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[This comes by way of Beth Clay, Professional Staff Member, Government Reform Committee U.S. House of Representatives, Rep. Dan [email protected]. Technical abstract of related study, "Discovery Of Allelic Variants Of HOXA1 And HOXB1: Genetic Susceptibility To Autism Spectrum Disorders" is shown under “Research Abstracts” which follows.]http://www.nichd.nih.gov/autism/

Researchers funded by the National Institutes of Health have identified a gene that may predispose people to developing autism. The gene, known as HOXA1, plays a crucial role in early brain development. The study was conducted by a research team in NIH's Collaborative Programs of Excellence in Autism and was published in the December issue of Teratology. "These findings strongly suggest that a gene controlling early brain formation may underlie the development of autism in a large number of cases," said Duane Alexander, M.D., Director of the National Institute of Child Health and Human Development (NICHD) and chair of NIH's autism coordinating committee. The spectrum of disorders known collectively as autism frequently involve problems in communicating with others and difficulty interacting socially. Many people with autism exhibit repetitious hand and body movements. Roughly one in 500 persons may be affected by some form of the disorder. The research team was led by Jennifer Ingram, Ph.D., andChristopher Stodgell, Ph.D., of the University of Rochester School ofMedicine and Dentistry in Rochester, New York. The research was conducted aspart of the NIH Collaborative Program of Excellence in Autism (CPEA). This$42 million research initiative is an international network of ten researchteams seeking to unravel the mysteries of autism. The network is co-fundedby the NICHD, the National Institute of Deafness and Other CommunicationDisorders, and the National Center for Complementary and AlternativeMedicine. (continued, page 5)

Researchers Identify Gene Common to Many with Autism

We welcome your submissions of items of interest for inclusion in our newsletter. Please mail to:Reaching Potentials, 2875 S. Congress Avenue, Suite H, Delray Beach, FL 33445Or you may send via facsimile to 561-274-3932 or 954-321-1019 or e-mail to [email protected]

Co-editors:Pamela GorskiMapy Chavez Brown

If you would like to place an advertisement in our newsletter, please submit your request IN WRITING to:

Pamela GorskiReaching Potentials, Inc.2875 S. Congress Avenue, Suite HDelray Beach, FL 33445Fax: 561-274-3932

Investigadores Identifican Gene Común en Muchos Individuos con Autismo

[Este artículo viene de Beth Clay, Miembro Profesional, Comité de Reforma, Cámara de Representantes, Rep. Dan Burton. [email protected]. Extracto técnico del estudio "Descubrimiento de las Variantes de Allelic de HOXA1 y HOXB1: La susceptibilidad genética en los desórdenes del espectro del Autismo" sigue.] http://www.nichd.nih.gov/autism /

Investigadores financiados por los institutos nacionales de la salud han identificado un gene que puede predisponer gente a desarrollar autismo. El gene, conocido como HOXA1, desempeña un papel crucial en el desarrollo temprano del cerebro. El estudio fue conducido por un equipo de investigación en los programas de NIH de Colaboración para la excelencia en Autismo y fue publicado en la edición de diciembre de Teratología. "Estos resultados sugieren que un gene que controla la formación temprana del cerebro pueda ser la base del desarrollo del autismo en una gran mayoría de casos, " dijo Duane Alexander, M.D., Director del Instituto Nacional de la Salud de Niño y del Desarrollo Humano (NICHD) y presidente del comité de autismo de NIH. El espectro de los desórdenes conocidos colectivamente como autismo incluye con frecuencia problemas de comunicación con otros y dificultad en la interacción social. Mucha gente con autismo exhibe movimientos repetitivos de las manos y del cuerpo. Aproximadamente, una de cada 500 personas son afectadas con Autismo. El equipo investigador fue dirigido por Jennifer Ingram, Ph.D., y Christopher Stodgell, Ph.D., de la Universidad de Rochester, Escuela de Medicina y Odontología en Rochester, New York. La investigación fue conducida como parte del programa de NIH para la Colaboración para la excelencia en Autismo (CPEA). Esta investigación de

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The researchers tested 57 people diagnosed with autism for a variant of the HOXA1 gene. Of these, 22--about 40 percent-had one copy of the variant. Only one person with autism carried two copies of the variant gene, said the study's senior investigator, Patricia M.Rodier, Ph.D., of the University of Rochester School of Medicine. When the researchers tested hundreds of people without autism, they found that people who had two copies of the variant were even less common. This suggests that having two copies of the mutant gene interferes with survival. Moreover, after testing the genes of parents and other family members of people with autism, the researchers found that symptoms of autism were more common in people who inherited the variant gene from their mothers than in those who inherited the same gene from their fathers. Dr. Rodier said that this agrees with several other studies of patterns of autism in families; inheritance from the mother seems to play a strong role in who develops the disorder. Dr. Rodier and her coworkers first thought to investigate the HOXA1 gene after reviewing the pattern of birth defects resulting from prenatalexposure to thalidomide. Children born to mothers who took the drug during pregnancy have sometimes been born with autism. Some of the autistic children born to mothers who took thalidomide also had misshapen ears, as well as abnormalities in the nerves of the head and face. Previous studies of these children suggest that the damage to the ears and facial nerves resulted between the 20th and the 24th days after conception. This time span marks the development of brain regions that later control the muscles of the eyes, face, tongue, jaw, and throat. Because mice engineered to lack the HOXA1 gene show similar patterns of brain and ear abnormalities, the researchers tested autism patients for abnormalities of the correspondinghuman gene. "One by one, we're finding the genes responsible for the autism spectrum disorders," said Marie Bristol-Power, Ph.D, NICHD special assistant for autism programs. She noted that other NICHD-funded investigators previously have discovered genes for two autism-related disorders, Rett syndrome and Fragile X syndrome. As is the case with such findings, the Rodier group's report must be confirmed by other researchers. The other teams in the CPEA will seek to reproduce the findings in the near future.* * *

NOTEAny resources listed in this newsletter or distributed through monthly meetings or training workshops are given on an information only basis. Publication of any treatments, opinions, publications, products or services by individuals or organizations does not indicate an endorsement by Reaching Potentials, Inc.

$42 millones es toda una red internacional formada por diez equipos de investigación que buscan al desenredar los misterios del autismo. La red es financiada a través de la colaboración entre el NICHD, el Instituto Nacional de la Sordera y Otros Problemas de la Comunicación, y el Centro Nacional para la Medicina Complementaria y Alternativa. Los investigadores estudiaron a 57 personas diagnosticadas con autismo para ver si tenían la variante del gene HOXA1. De éstos, 22 -- cerca de 40 por ciento-tenían una copia de la variante. Solamente una persona con autismo llevó dos copias del gene variable, dijo a investigador principal del estudio, Patricia M. Rodier, Ph.D., de la Universidad de Rochester, Escuela de Medicina. Cuando los investigadores estudiaron a centenares de gente con autismo, encontraron que aquellos que llevaban dos copias de la variante eran incluso menos comunes. Esto sugiere que tener dos copias de la variante interfiere con la supervivencia. Por otra parte, después de probar los genes de padres y otros familiares de personas con autismo, los investigadores encontraron que los síntomas del autismo eran más comunes en aquellos que heredaron la variante de sus madres, que en aquellos que la heredaron gene del padre. El Dr. Rodier dijo que estos resultados concuerdan con varios otros estudios acerca del autismo en las mismas familias; herencia de la madre parece desempeñar un fuerte papel en quién desarrolla el desorden. El Dr. Rodier y sus compañeros de trabajo decidieron investigar el gene HOXA1 después de estudiar los defectos que resultan de la exposición prenatal al thalidomide. Los niños nacidos a madres que tomaron la droga durante el embarazo han nacido a veces con autismo. Algunos de los niños con autismo nacidos a estas madres también han tenido oídos deformes, y anormalidades en los nervios de la cabeza y de la cara. Anteriores estudios sugieren que el daño a los oídos y a los nervios faciales ocurrió entre los días 20 y 24 después de la concepción. Este es el periodo en que se desarrollan las regiones el cerebro que más tarde controlarán los músculos e los ojos, cara, lengua, quijada, y la garganta. El hecho de que pruebas en ratones mostraron anormalidades similares,

Autism Gene ….. continued from page 4 Continued, next pageAutism Gene….continued

Continued, next page

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An education professor from the University of Illinois weighed in with an essay condemning the Follow Through evaluation as too

los investigadores estudiaron a pacientes con autismo para las mismas anormalidades.

"Uno por uno, estamos encontrando los genes responsables por los desórdenes dentro del espectro del autismo, " dijo Marie Bristol-Potencia, Ph.D, asistente especial del NICHD para los programas del autismo. Ella observó que otros investigadores del NICHD han descubierto previamente los genes causantes de dos desórdenes relacionados con el autismo, el síndrome de Rett y el síndrome de la X frágil.

Como se acostumbra, el informe del grupo de Rodier debe ser confirmado por otros investigadores. Los otros equipos en el CPEA intentarán reproducir los resultados en futuras investigaciones.

A major hindrance has been that Colleges of Education do not teach future teachers and administrators about Direct Instruction; they have to learn about it

Direct InstructionContinued from Page 3

(continued on Page 6) After all, the program might have other goals, such as developing "a repertoire of abilities for building a broad and varied experiential base." An education professor from the University of Illinois weighed in with an essay condemning the Follow Through evaluation as too scientific. "Teachers do not heed the statistical findings of experiments when deciding how best to educate children," hewrote, nor should they be influenced by what "the rationality of science has to say about a given educational approach." The attacks were effective. Instead of highlighting Direct Instruction's success, the Office of Education (predecessor of theDepartment of Education) disseminated data on other models as well, including some that had resulted in students having lower scores than control groups. At the University of Oregon, the only education school willing to give Direct Instruction a home, the developer of the program,Siegfried Engelman, and his colleagues continued to refine their approach and gather evidence of how well it worked. But in 1998, there were only 150 Direct Instruction schools in the U.S. A major hindrance has been that Colleges of education do not teach future teachers and administrators about Direct Instruction; they have learn about it through happenstance. Thaddeus Lott, the principal of Wesley Elementary School in Houston, was searching for a program for the kids at his school, located in one of the city's poorest neighborhoods, when hechanced upon a book by Mr. Engelman. Mr. Lott instituted Direct Instructionat Wesley, and for more than two decades his students have been distinguishing themselves, producing test scores that put Wesley in the top ranks. Mr. Mahmoud happened to hear of Mr. Lott's success at Wesley – to the benefit of hundreds of Minneapolis children. And still the ed schools continue their not-so-benign neglect. In recently reviewing dozens of textbooks used to

See Direct Instruction…….continued on Page 7

Autism Gene…….continued

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teach future teachers, I found exactly one mention of Direct Instruction, a reference a few sentences long that described it as "prescriptive." A teacher at Mr. Lott's school, Brandi Scott, a recent graduate of the University of Houston, told me thather request to practice-teach at Wesley was initially refused by the college of education. Only after her father, a prominent Houston attorney, got involved was a plan worked out that let her do half her practice teaching atthe school. A recent report by the American Institutes for Research offers hope to those who think that ed-school silence on Direct Instruction should end. The report found that Direct Instruction was one of only two educational approaches with strong evidence of positive effect, a conclusion hard to ignore. Equally important, one of the report's sponsors was the National Education Association. If an organization as notoriously intransigent as the NEA can help bring recognition to Direct Instruction, perhaps at long last there is the possibility of persuading ed schools to give it the attention it deserves.

Direct Instruction……………Continued from Page 6 Dr. Tristram

Smith to give community lecture on

February 20

FAU/CARD and Reaching Potentials are proud to announce that Dr. Tristam Smith will be presenting a community lecture on Tuesday, February 20th at Florida Atlantic University

Dr. Smith will be discussing the research in support of intensive earlyintervention and comment on how he and others connected with the YoungAutism Project under Lovaas at UCLA have continued to develop behavioralinterventions for these children.

The Lecture will be on Tuesday, February 20, 2001 from 7-9 PM at the FAU Boca Campus, Live Oak Pavilion at the University Center.

This is a free lecture. Seating is on a first come, first seated basis. Persons needing accommodations should call 561 297 2265 five days prior to arrange accommodations.

EIGHTH ANNUAL STATEWIDE CARD CONFERENCE

Keynote Speakers: Dr Bridget Taylor, Jay Klein, MSW, Dr James Partington & Dr Sally Ozonoff

WHEN: January 13 & 14, 2001WHERE: Hilton Fort Laud Airport

1870 Griffin RoadDania, Florida

Early registration costs are $85.00 per person (postmarked before 12/15/00)

Regular registration costs are $100 per person (postmarked after 12/15/00)

Checks can be made out to UM CARD and sent to : UM CARD, 1500 Monza Avenue, Third Floor, Coral Gables, FL 33146

For more information contact 1800 9 AUTISM (Ext. 2)

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Simply stated, if an instruct-ional goal is one that a potato could do then the goal fails

Because many students have not been taught how to communicate, we sometimes assume that they either have nothing to say or do not understand or feel what is

Consider the PotatoBy: Fred Orelove, DirectorVirginia Institute for Developmental Disabilities

Today’s riddle: “How is a learner with a severe disability like a potato?” Answer: “One is a person, the other is a potato.”

No, the riddle is not funny, nor is it supposed to be. Yet we sometimes act as if people and potatoes have something in common. Indeed, one of the most tragic events imaginable is to suffer an accident and to be left “a vegetable.” Not that long ago, we used to refer to individuals with seriously limited mental function as being “low grade,” much as we classify produce. (Today, we may say “low functioning,” which is not much of an improvement.)

Language aside, the mere thought of considering a student and a potato side-by-side probably strikes most people as absurd. However, some instructional goals are written as though no difference existed. Joyce Ford, a parent from Idaho – a state whose license plate reads “Famous Potatoes” suggests applying a criterion to instructional goals. Joyce refers to this as “the potato test.” Simply stated, if an instructional goal is one that a potato could do then the goal fails the potato test.

Consider, for example, the following goal: “Benjamin will go to music with his regular education class.” Since a potato could achieve this, the goal fails the potato test, and the goal needs to be rewritten to reflect what Benjamin will do in music. Similarly, the goal, “Latisha will sit quietly for 20 minutes,” does not pass the potato test, because it addresses the absence of performance. It would be more useful to construct the goal around Latisha’s engaging in a specific activity, such as playing with toys and/or socializing with a classmate.

In addition to using it as a yardstick for instructional goals, what other applications to effective programming might we find in the potato? Think about students who have physical disabilities and who require special positioning during the day in equipment such as side-lyers, corner chairs, and prone standers. Special positioning, while necessary, is not sufficient. Children should be positioned in equipment as a means towards an instructional end, such as washing dishes, bringing hands together to play with a toy, or communicating with a friend. Merely being in a side-lyer, for instance, is something a potato could do and, hence, should be discouraged.

Consider next the development of plans for reducing challenging behaviors. Targets such as “not hitting” and “not screaming,” by themselves, could be met by a potato and, therefore, are not adequate plans for students. Learners need behavioral support plans that address, in part, the alternative, more desirable behaviors they will learn and use in place of the original behavior.

In all of the examples provided, potatoes and students differ by the very fact that students are active, interacting members of the environment and must be treated as such. Potatoes, in contrast, are passive. You can talk to a potato, sing to it, and place it in an H-harness. But you cannot expect behavior back from a potato. We must, however, expect and demand something back from our students. Instructional goals, therapeutic positions, behavioral plans; none of them can be passive if our expectations for learners are appropriately high.

Besides the language we use and the instruction we provide, there is another important dimension to the potato discussion. Learners with severe disabilities, unlike potatoes, have feelings. They share the same range of emotions – joy, anger, frustration, sadness, fear, and so forth – as do all people. And many have experienced the pain and hurt that come with not being fully accepted and of being talked at or around as if they did not exist.

Because many students have not been taught how to communicate, we sometimes assume that they either have nothing to say or do not understand or feel what is being said around them. But they do. And, because we assume that they cannot tell the difference between being in a classroom by themselves and being a full part of the school, we maintain and justify separate classes. But our assumptions often are wrong. They fit for the potato but not for our students.

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VOLUNTEERS NEEDED FOR EARLY INTERVENTION STUDYResearch has shown that applied behavior analysis is an effective methodology for instruction of children with autism. Furthermore, recent research has shown that the use of simplified speech in the antecedent portion of a discrete instructional trial produces higher response accuracy for certain individuals with autism, while typical speech produces the same outcome as simplified speech for others. A study to look further into the relationship between autism severity level and response accuracy under both conditions is being conducted with prekindergarten students who are currently receiving home-based behavioral intervention.

If you are currently running a home program using the principles of applied behavior analysis, your child is receiving at least 20 hours per week of instruction, and your child is between the ages of 2 and 4; you might qualify to participate in this study.

If you are interested in receiving further information, please contact Mapy Chavez Brown, B.A., BCABA at (561) 866 0329. Identity of all callers and participants will be kept strictly confidential.

Participation is voluntary, and willingness or unwillingness to participate will not affect in any way the current and/or future services being provided to you by Reaching Potentials, Inc.

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Reaching Potentials TRAINING CALENDAR

JANUARY - MAY 2001

BEGINNING DISCRETE TRIAL TRAINING SERIES:

January Track:January 19 Overview of Behavioral Programming $ 25.00 6:30 p - 9:30 pJanuary 20 & 21 Beginning Discrete Trial Training $150.00 9:00 a - 4:00 p

(Two Day Workshop)(Required Textbook: A Work in Progress by Ron Leaf & John McEachin)

February Track:February 22 Overview of Behavioral Programming $ 25.00 6:30 p - 9:30 pFebruary 24 and Beginning Discrete Trial Training $150.00 9:00 a - 4:00 pMarch 3 (Two Day Workshop)

(Required Textbook: A Work in Progress by Ron Leaf & John McEachin)

March / April Track:March 29 Overview of Behavioral Programming $ 25.00 6:30 p - 9:30 pMarch 31 and Beginning Discrete Trial Training $150.00 9:00 a - 4:00 pApril 7 (Two Day Workshop)

(Required Textbook: A Work in Progress by Ron Leaf & John McEachin)

May Track:May 18 Overview of Behavioral Programming $ 25.00 6:30 p - 9:30 pMay 19 & 20 Beginning Discrete Trial Training $150.00 9:00 a - 4:00 p

(Two Day Workshop)(Required Textbook: A Work in Progress by Ron Leaf & John McEachin)

(All classes to be held at our DELRAY OFFICE)(Call Reaching Potentials @ 561-274-3900 or 954-321-7393 one week prior to class date to confirm time and location)

Beginning Discrete Trial Training Workshop carries required prerequisite of Overview of Behavioral Programming class

BEGINNING SERIES CLASSES - SPANISH PRESENTATION CLASES DE NIVEL BASICO - PRESENTACION EN ESPAÑOL LLAME A LA OFICINA PARA OBTENER FECHA Y HORA EXACTA

INTERMEDIATE & ADVANCED TRAINING: (Presenter: Jean Hays Bachrach, MA, CCC/SLP, CBA/e/fl)

CALL OUR OFFICE FOR SPRING SCHEDULE

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August 30, 2000

[The current Congressional Quarterly Researcher has a collection of material looking at current vaccine issues and controversies, one of which is the alleged links to autism. It is significant that these topics are being addressed in such a politically prestigious publication. We are reprinting some of these reports in this newsletter. This article gives ahistory of the inoculation movement.]

Background [Vaccine History]

Early Breakthroughs

The first vaccine breakthrough in modern times came in 1796, when Edward Jenner, an English country physician, noticed that dairymaids exposed to the milder disease cowpox were immune to smallpox. He took some fluid from a patient's cowpox sore and later introduced it into a scratch in the arm of an 8-year-old boy. Forty-eight days later, when Jenner exposed him tosmallpox, he resisted the infection. Jenner named his substance "vaccine" after the Latin word for cow. Another breakthrough came in the late 19th century, when Louis Pasteur, a French chemist, developed chemical techniques to isolate viruses and weaken their effects so they could be used as vaccines. Yet vaccination continued to provoke controversy. Pasteur's first administration of rabies vaccines to humans was strongly protested by physicians and the public, and efforts to immunize British troops against typhoid at the turn of the century were bitterly opposed despite the serious risk of typhoid faced by troops serving in the Boer War in South Africa.[12] By the turn of the century, other scientists had developed "killed" vaccines against typhoid, plague, rabies and cholera. By the mid-1920s, vaccines had been developed against diphtheria -- an often-deadly childhood disease characterized by a severe inflammation of the throat – and pertussis, or whooping cough, another often-fatal childhood disease characterized by a loud "whooping" sound as the victim struggles to get air into the lungs after violent fits of coughing. Children and parents of the 1940s and '50s especially dreaded paralytic polio, which could paralyze arms, legs or respiratory muscles. News stories showed children with metal braces on their legs or encased in the so-called iron lungs that helped them to breathe. Two teams of scientists led by Jonas Salk and Albert Sabin each developed a polio vaccine. The Salk vaccine, using killed viruses, was licensed in 1954 and used in mass-immunization campaigns. Within six years, polio cases dropped 90 percent. But the Salk vaccine did not provide complete immunity against all three polio viruses. By 1961, Sabin had developed an oral vaccine that did, using a live, attenuated virus. It all but replaced the injectible Salk version in the United States. But because it used a live virus, about a dozen persons a year contracted polio from the vaccine or from being exposedto a recently vaccinated child. Consequently, public health officials decided last January to phase out the live, oral vaccine. By the 1960s, routine vaccination was no longer controversial among the public and the medical community, and live-virus vaccines had been developed for measles (1963), rubella/German measles (1966) and mumps (1968). Mandatory Vaccinations

To be effective, vaccination depends on universal immunization. Otherwise, anyone who is not immunized can contract a disease and spread it to others. State laws requiring immunization date from the early 1800s, when Massachusetts required smallpox vaccinations. Britain established the principle of universal free vaccination for smallpox three years later. In

The History of the Inoculation Movement (Vaccine).

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recent times in the United States, local immunization laws aimed at schools and licensed day-care began with efforts to eliminate measles in the 1960s and '70s. Opposition to mandatory vaccinations -- largely based on religious, legal, medical or safety grounds -- emerged almost as soon as they were implemented. In 1905, the U.S. Supreme Court upheld compulsory-vaccination laws, but anti-vaccination sentiment prevailed in some states. [13] Nonetheless, the incidence of smallpox continued to decline. The United States reported its last naturally occurring case in 1949. In 1971, routine vaccination for smallpox was discontinued. By contrast, the polio vaccine resulted in an immediate push for federal action to make the vaccine widely available. After Salk reported positive results from his vaccine in 1955, members of Congress from both parties urged the government to distribute the vaccine itself or help the states. The Republican administration of Dwight D. Eisenhower branded a Democratic-sponsored bill for universal free vaccines as a form of socialized medicine. By August, Congress had drafted a compromise measure, the Poliomyelitis Vaccination Act, which provided $28 million to the states for free universal polio vaccines. Over the next 45 years, the nation would experience a cyclical pattern: Disease risk would appear to diminish thanks to immunization; then politicians would cut back on immunization funds; vaccination rates would drop, followed by disease outbreaks; then there would be an outcry for more funding for immunizations. [14] For example, polio aid was curtailed in1957, only to be revived in 1960 after outbreaks of the disease in several cities. To provide broader assistance, President John F. Kennedy asked Congress in 1962 to authorize aid to states to buy vaccines against diphtheria, whooping cough and tetanus, as well as polio.

DPT Under Attack

By the early 1980s, infectious epidemics that killed hundreds of children a year had drifted into distant memory, and some parents were beginning to start questioning the need for massive inoculations. [15] A small number of those parents felt that their children had been damaged by vaccines that were not as safe as they could be -- particularly the DPTshot. Among them was the NVIC's Fisher. In 1980 her toddler Chris suffered a severe reaction after his fourth dose of DPT and an oral polio vaccine. After studying the medical literature on vaccine reactions, she learned that he had suffered convulsions and collapsed shock, a rare, adverse reaction to a DPT shot. After that, Chris was different -- physically, mentally and emotionally. "He no longer knew his numbers or the alphabet, he had poor concentration levels, constant ear infections and diarrhea that would not stop," Fisher says. "He became emaciated and stopped growing." Fisher learned that similar adverse events related to the DPT shot in Japan, Sweden and the United Kingdom had led to drops in immunization rates in those countries, and subsequent epidemics of pertussis. In 1982, Fisher and other mothers founded the advocacy group that evolved into the NVIC. Their goal: get Congress to demand safer DPT vaccines. By then Japan was already using a safer version of the vaccine, produced, ironically, with technology developed by the NIH. In fact, a U.S. company, Eli Lilly, had marketed the safer version in the 1960s and '70s, but when Wyeth bought Lily in 1976, it discontinued the product. A 1977 Wyeth internal document said producing the safer DPT shot would result in "avery large increase in the cost of manufacture." [16]

English physician Edward Jenner (top) coined the term "vaccine" after discovering how to protect against smallpox. Jonas Salk (center) led the team that developed the first polio vaccine in 1954 in Pittsburgh. Albert Sabin (bottom) developed an improved oral polio vaccine in 1961 at his University of Cincinnati lab. (Sources: Centers for Disease Control and Prevention, Archive Photos and Corbis-Bettmann Photos.) "Sure, you can produce a much less toxic product in very low yields, and anyone who has worked on pertussis knows this," Dennis Stainer, an assistant director of production and development at Connaught Medical Research Laboratories in Canada, told a 1982 symposium sponsored by U.S. health officials. "What we are faced with is going from a vaccine that costs

Continued, next page

History of the Vaccine – continued from page 11

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literally cents to produce to one that I believe is going to cost dollars to produce." [17] By the mid-1980s, at least 300 lawsuits had been filed against U.S. DPT manufacturers. "They knew that the older pertussis vaccine was making kids sick," recalls Ted Warchafsky, a Milwaukee attorney who represented parents seeking damages. In 1991, Fisher documented the development of the DPT vaccine in A Shot in the Dark, explaining how the more toxic whole-cell pertussis portion of the shot was causing so many problems, and why a safer, acellular version had not been widely marketed in the United States. "When word went out that I was writing that book, people started leaving packages of documents, with transcripts from government meetings, on my doorstep in the middle of the night," Fisher says. "One physician told me, 'You are on the right track, but I will never stand up beside you publicly and say that.' " Fisher says "it was all about money," but, in fact, health officials and drug firms also wanted to keep the price of vaccines low enough for impoverished Third World governments. "It's the same for every . . . vaccine," said Stanley Plotkin, medical and scientific director for Pasteur-Merieux-Connaught, a Paris-based pharmaceutical company. "Research costs are recouped in North America and Europe, and the vaccines are sold in the developing world at much, much lower margins." [18] Stainer went on to ask at the 1982 meeting whether it was right to switch to the safe DPT vaccine: "Are we . . . going to have two vaccines, one for the wealthy and one for the rest? I don't think any of us want that." But that is exactly what has happened. The U.S. government stopped purchasing the whole-cell DPT vaccine in 1996 and recommended that doctors switch to the acellular DTaP version. Only about 6-7 percent of the pertussis vaccines in the U.S. still contain the whole-cell DPT. But it is widely used in the Third World. But back in the mid-1980s, faced with increasing lawsuits, one of the three DPT producers stopped producing it, and the remaining manufacturers found it was increasingly difficult to obtain liability insurance. "Shortages of the vaccine occurred in some areas of the country, and prices escalated dramatically," Duke University's Katz recalled. [19] But instead of selling the safer Japanese vaccine, Warchafsky says, U.S. manufacturers asked Congress to limit their liability for adverse reactions to any vaccine mandated by the government, hinting they might stop producing children's vaccines without it. "And then the industry started buying up the experts," he contends, citing the example of James Cherry, a widely recognized pertussis expert who has served on both the ACIP and the AAP's vaccine advisory committee. Cherry was a principal author in a 1978-79 study sponsored by the FDA and the University of California at Los Angeles (UCLA), which found that an alarming number of children receiving the DPT shot, one in 1,750, was at risk of suffering from "collapse shock" and an equal number of having convulsions. Yet by 1990, after having received a $400,000 grant from Lederle, he declared in the Journal of the American Medical Association (JAMA) that severe brain damage caused by the vaccine was a "myth." By 1993, Lederle had given Cherry and UCLA an additional $834,000 for pertussis research and expert testimony in lawsuits brought by parents of injured children. [20] Meanwhile, Congress in 1986 limited the liability of manufacturers of mandated vaccines and health ractitioners who administer them. The National Childhood Vaccine Injury Compensation Act also: Established a "no-fault" system of compensation for injuries or deaths reasonably associated with the administration of childhood vaccines; Ordered CDC to set up a centralized system for reporting adverse reactions to vaccines; and Required periodic independent reviews of the scientific evidence on adverse events.

Immunizations Lag

By the late 1980s, immunization rates were slipping again. Then, in the first years of George Bush's presidency, the nation got a wake-up call on the dangers of incomplete immunization: A major measles epidemic in 1989-91 killed at least 132 persons. Concentrated in Chicago, Houston, Los Angeles, New York and Philadelphia, the outbreak had infected 18,000 people by 1989. More than three-fourths of the cases involved unimmunized preschool children, mostlyblacks and Hispanics. "Everyone knows that when immunization levels drop, it is just a matter of time before you get an epidemic," said Philip A. Brunell, former chairman of the AAP Committee on Infectious Diseases. [21]

History of the Vaccine….continued from page 12

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The U.S. military's push to inoculate all service members against anthrax spread by germ warfare has been highly controversial. Many service members quit rather than take the vaccine or were court-martialed forrefusing to take it. (KRT Photo/Kim Foster) In recent years, concern about vaccines has deepened as officials have begun adding new vaccines for non-epidemic diseases to the mandatory schedule, and as enforcement of mandatory vaccinations has begun to tighten. Some doctors, rewarded by managed-care companies for achieving high inoculation rates, won't treat patients who refuse vaccination. States, which receive federal grants for achieving high inoculation rates, are pressuring local health departments to improve noculation rates. And welfare mothers in some states are having their checks reduced if their kids don't get vaccinated. The Clinton administration has won legislation to extend vaccination programs to the poor and has recommended new legislation to improve vaccination levels. Since 1994, the Vaccines for Children program has allowed the government to provide free pediatric vaccines for low-income children. In addition, the federal government is overseeing establishment of a network of state electronic vaccine-tracking registries. So far, 22 states have set up or are in the process of establishing such registries, whereby all children are enrolled at birth. One state is using the database to contact parents of children who have not received all their federally mandated vaccines.

[12] From Susan S. Ellenberg and Robert T. Chen, "The Complicated Task of Monitoring Vaccine Safety," Journal of the U.S. Public Health Service, Public Health Reports, January/February, 1997; Vol. 112, No. 1; pp. 10-20. [13] Jacobson v. Massachusetts 197 U.S. 11 (1905). [14] For background, see Kenneth Jost, "Childhood Immunizations," The CQ Researcher, June 18, 1993, pp. 529-552. [15] For background, see Mary H. Cooper, "Combating Infectious Diseases," The CQ Researcher, June 9, 1995, pp. 489-502. [16] Rock, op. cit., p. 153. [17] Harris L. Coulter and Barbara Loe Fisher, A Shot in the Dark (1991), p. 209. [18] "Industry Perspective: An Interview with Dr. Stanley Plotkin," IAVI Report, June 1996. p. 7. [19] Katz's comments were made in testimony Aug. 3, 1999, before the House Government Reform Committee. [20] Rock, op. cit., p. 153. [21] Jost, op. cit., p. 540.

From the CQ Researcher of Aug 25, 2000© 2000 Congressional Quarterly Inc. All Rights Reserved.

Continued, next page

History of the Vaccine….continued from page 13 THE CANDLE

A few years ago, at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back ...........every one of them.

One girl with Down's Syndrome bent down and kissed him and said, "This will make it better." Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes. People who were there are still telling the story.

Why? Because deep down we know this one thing: What matters in this life is more than winning for ourselves. What matters in this life is helping others win, even if it means slowing down and changing our course.

If you pass this on, we may be able to change our hearts as well as someone else's..............

"A candle loses nothing by lighting another candle"

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Some of the following research project abstracts were posted to the FEAT newsletter, CAN Newsletter or gleaned from other internet sites and journals. Fifteen new autism research projects where presented at the 30th annual Society For Neuroscience meeting (New Orleans, Nov. 4-9, 2000) according to the CAN Newsletter commenting “two years ago there were only 3 autism projects.” Four of these projects are funded by CAN. This material has technical language. http://sfn.ScholarOne.com/itin/]

Early Intensive Behavioral Intervention: Emergence of a Consumer-Driven Service Model John W. Jacobson, 2000, The Behavior Analyst, 2000, 23, 149-171

Parents are becoming influential stimulators and shapers of public policy in regard to educational services for their children. Increasingly, this advocacy has created a controversy about the role of applied behavior analysis as a foundation for early intensive behavioral intervention in autism. Uncertainties exist in policy regarding the role of behavior analysis in early intervention and the capacity of behavior analysis to field a trained work force. Based on contacts with parents of children with autism and information available in a variety of forms on the Internet, there is a rising demand for fundamentally better early intervention services that are available and accessible, provide active intervention, and are based on principles of behavior analysis. Contemporary movements in special and early education, however, appear to be nonconductive to scientifically based treatments, and school districts seem hostile to an increasing role for behavior analysis and to the establishment of services that are responsive to changing parental priorities for the education of their children with autism and related disorders.********

Two-Year Outcome of Preschool Children With Autism or Asperger’s Syndrome.Szatmari, P, Bryson, SE, Streiner DL, Wilson F, Archer L, Ryerse C. Am J Psychiatry, 2000 Dec 1; 157(12): 1980-1987

RESEARCH ABSTRACTS

OBJECTIVE: DSM-IV specifies that Asperger’s disorder is a type of pervasive developmental disorder without clinically significant cognitive or language delay. There are no data, however, on the outcome of children with Asperger’s disorder or on whether their outcome differs from that of children with autism. The objectives of this study were to compare the outcome of groups of children with these disorders over a period of 2 years on variables independent of the defining criteria and to identify variables that might account for these differences.METHOD: All children 4-6 years of age who came for assessment or were currently in treatment at a pervasive developmental disorder service of one of several centers in a large geographic region were identified. Children who received a diagnosis of autism (N=46) or Asperger’s syndrome (N=20) on the basis of a diagnostic interview and had an IQ in the nonretarded range were given a battery of cognitive, language, and behavioral tests. Families were contacted roughly 2 years after the date of their enrollment in the study, and many of the tests were readministered.RESULTS: Children with Asperger’s syndrome had better social skills and fewer autistic symptoms 2 years after study enrollment than the children with autism. The differences in outcome could not be explained by initial differences in IQ and language abilities. Children with autism who had developed verbal fluency at follow-up were very similar to the children with Asperger’s syndrome at study enrollment.CONCLUSIONS: Although the exact mechanism for the differences in outcome remain to be determined, it appears that Asperger’s disorder and autism represent parallel but potentially overlapping developmental trajectories.PMID: 11097964********

Dawson, G., What is Childhood Disintegrative Disorder, how is it different from autism, and what is believed to be its cause?Journal of Autism and Developmental Disorders, 2000 Apr, 30(2): 177.* * *

Baird, G; Charman, T; Baron-Cohen, S; Cox, A; Swettenham, J; Wheelwright, S; DrewA screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 2000 Jun, 39(6): 694-702.* * *

Filipek PA, Accardo PJ, Ashwal S, Baranek GT, Cook EH Jr, et al. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology. 2000, August 22; 55(4): 468-79.* * *

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Smith T, Groen AD, Wynn JW. Randomized trial of intensive early intervention for children with pervasive developmental disorder. Am J Ment Retard. 2000 Jul; 105(4): 269-85.* * *

Werner E, Dawson G, Osterling J, Dinno N. Brief report: Recognition of autism spectrum disorder before one year of age: a retrospective study based on home videotapes. J Autism Dev Disord. 2000 Apr; 30(2): 157-62.* * *

Erba HW. Early intervention programs for children with autism: conceptual frameworks for implementation. Am J Orthopsychiatry. 2000 Jan; 70(1): 82-94.* * * The Autism Genetic Resource Exchange: A Collaborative Gene Bank For Autism Research

D.S. Compton1; D. Geschwind1,2; P. Iversen1; D.S. Baskin1,3* 1. Cure Autism Now, Los Angeles, CA, USA 2. Neurogenetics Program, UCLA School of Medicine, Los Angeles, CA, USA 3. Departments of Neurosurgery and Anesthesiology, Baylor College of Medicine, Houston, TX, USA

The genetics of autism indicate that several genes play an interacting role with unknown environmental factors to cause the disease. The strongest evidence for genetics comes from twin studies, showing a high concordance for autism and related social or cognitive abnormalities in monozygotic twins (90%) and a small concordance in dizygotic twins(4.5%) CAN, a group of scientists, parents, and professionals, has founded AGRE, establishing a repository of DNA, immortalized cell lines, serum, and clinical data from multiplex and singleton families for use in linkage and other studies of autism in an effort to accelerate the discovery of gene(s) involved in autism. A large number of multiplex families are needed in order to expand and

replicate linkage studies. Parental, proband, and unaffected siblings' biomaterials are banked and available for analysis. The Autism DiagnosticInterview (ADI) and the Autism Diagnostic Observational Scale (ADOS) are collected on affected members as a standard clinical evaluation. The current number of individual's biomaterials banked is 1,317 from 296 families. Of these, 283 ADI's are completed, 218 family's materials are available, of which 200 have been tested for Fragile X. AGRE, in collaboration withColumbia University, is establishing an online genotypic database, which will store raw genotypic data, linkage results and related phenotypic research data of all family members collected. Additional information is available by link to AGRE at www. canfoundation.org. Supported by: The Cure Autism Now foundation* * *

Topological Warping In Normal And Autistic Brain Development

M.R. Herbert1*; S. Steele1; N. Makris1; N. Lange2,3; D. Kennedy1; A.Bakardjiev4; J. Hodgson1; M. Takeoka5; C. Lee6; V.S. Caviness1 1. Dept Neurol Ctr Morphometric Analysis, MGH, Charlestown, MA, USA 2. Psych, 3. Biostat, McLean Hosp, Belmont, MA, USA 4. Peds, UCSF, San Francisco, CA, USA 5. Neurol, Children's Hosp, Boston, MA, USA 6. Brain Cog Sci, MIT, Cambridge, MA, USA

MRI-based cortical parcellation, using 48 largely gyral-based parcellation units per hemimsphere, was performed on 20 young adult and 60 child brains (30 normal, 30 autistic) to characterize volumetric differences by age and diagnosis. The hypotheses were: 1) normal children would be volumetrically more similar to normal adults than to autistic children, and2) increased volume of autistic as compared with normal neocortex(previously established) would be non-uniformly distributed, and morepronounced in multimodal association cortex. Results: 1) Autistic childneocortex was significantly larger than normal child neocortex in superiorand inferior temporal gyri, supramarginal gyrus, and inferior frontal gyrus.2) Both autistic and normal child neocortex were smaller than adults forinferior and middle frontal gyri and cingulate and paracingulate gyri; but larger than adults in frontal, temporal, and occipital poles as well as in supramarginal and parahippocampal gyri. Conclusions: A diagnostic-related topology distinguishing between normal and autistic children is overlaid upon a dynamic pattern of volumetric overshoot and undershoot that is similar in brains of normal and autistic children. Supported by: NINDS multi-institutional Program Project Grant NS 20489, the Cure Autism Now Foundation, NIH grants NS02126, NS27950, DA09467 and NS37483; NIH grants NS34189 and MH57180 as part of the HumanBrain Project; and grants from the Fairway Trust and the Giovan.* * *

Neocortical System Abnormality In Autism During An Oculomotor Spatial 17

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Working Memory Task: An Fmri Study

K.E. Garver1; N.J. Minshew1; J.A. Sweeney1; K.R. Thulborn2*; B. Luna1 1. Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA 2. Radiology, University of Pittsburgh, Pittsburgh, PA, USA

Neuroimaging studies have provided compelling evidence that dysfunction to neocortical and cerebellar systems may underlie the behavioral abnormalities of autism including those in executive function. We performed an fMRI study at 3T in 10 non-mentally retarded autistic subjects and 6 healthy volunteers while they performed an oculomotor delayed response task compared to a reflexive oculomotor task. Results demonstrated activation in both groups of prefrontal, frontal, parietal, temporal, striatal, and thalamic regions. Comparison of signal intensity changes between groups revealed thatthere was similar activity in the recuneus, SEF, MT/V5 and thalamus.Autistic patients showed significantly higher activation of the FEF and superior parietal lobule. Controls showed higher activation in the DLPFC, pre-SMA, and anterior and posterior cingulate. These findings indicate that although autistic subjects are accessing the basic brain circuitry subserving the culomotor delayed response, they rely on regions known to underlie basic sensorimotor function and spatial transformations while healthy subjects rely on areas known to subserve higher-order behavioral control of anticipated responses. These results suggest that autism may be related to a dysfunction ofneocortical systems. Supported by: Supported by NARSAD, MH01727, MH01433, MH42969, NS35949 & HD35469* * *

Behavioral Subtypes Of Autistic Children Show Differences In Regional Brain Serotonin Synthesis

D.C. Chugani1,2*; M.E. Behen3; E. Asano1; J. Lee1; R. Rothermel3; O. Muzik2; H.T. Chugani1,4 1. Peds, 2. Radiol, 3. Psych, 4. Neurol, Wayne State Univ

Children's Hosp Michigan, Detroit, MI, USA

We have previously shown focal and global abnormalities of serotoninsynthesis measured with alpha[C-11]methyl-L-tryptophan (AMT) imaged by PET in autistic children compared to a non-autistic control group. In the current study, we grouped autistic children (N=24, 15M/9F; aged 2-13y, mean age 5.5(3.0)SD) using a cluster analysis of Gilliam Autism Rating Subscales.Two significant clusters were identified based upon differences instereotyped behavior (SB) and social isolation (SI) subscales (Cluster 1:SB=11.7(1.5), SI=11.1(1.9), n=16, 11M/5F, mean age 5.0; Cluster 2:SB=8.4(1.2), SI=8.0(1.5), n=8, 4M/4F, mean age 6.5). The clusters did not differ with age (p=0.25) or overall adaptive behavior composite scores on the Vineland Adaptive Behavior Scale (p=0.90).Brain regions of interest were defined on MRI T1 images using a semi-automated segmentation algorithm and copied to AMT PET standard uptakevalue (SUV) images following coregistration with MPI Tool. Significant differences in AMT SUV between the clusters were found in cerebellum (R cerebellar cortex (p=0.015), R cerebellar dentate nucleus (p=0.001), cerebellar vermis (p=0.009)) and in the pineal gland (p=0.025).Trends were found in the L (p=0.063) and R thalamus (p=0.083) and in the Lcerebellar cortex (0.058). These data suggest a possible role of the pinealgland in an autism subgroup and provide further evidence for the role of the cerebellum in autism, supporting previous pathology and structural imaging studies. These behavioral and neurochemical differences may be related to heterogeneity in etiology between the two subgroups. Supported by: NIH grant HD34942 to DCC* * *

Autism and Chromosome 22q13.3 Deletion

How to Get Full Text Versions of Research Articles Order online through the National Library of Medicine. Abstracts of articles can be found by goijng to the National Library of Medicine’s PubMed web site at www.pubmed.gov. A simple search engine allows you to retrieve information that has appeared in peer-reviewed research journals. At the Pub Med site you can use the Lonesome Doc system to electronically order full text articles from your local medical library. The cost is approximately $10 per article. Go to your local medical library. Look up and make copies of the articles you would like to read. State university medical libraries are open to the public, and many private universities also allow the public to use their facilities. Go to the author’s web

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Page 19: Newsletter - Reaching Potentials · Web viewPor otra parte, después de probar los genes de padres y otros familiares de personas con autismo, los investigadores encontraron que los

Reaching Out

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11121193&dopt=Abstract

Case with autistic syndrome and chromosome 22q13.3 deletion detected by FISH. 1: Am J Med Genet 2000 Dec 4;96(6):839-844 Goizet C, Excoffier E, Taine L, Taupiac E, El Moneim AA, Arveiler B, Bouvard M, Lacombe D Department of Medical Genetics, CHU Pellegrin, Bordeaux, France.

Autism is a rare neurodevelopmental disorder with a strong genetic component. Co-occurrence of autism and chromosomal abnormalities is usefulto localize candidate regions that may include gene(s) implicated in autism determinism. Several candidate chromosomal regions are known, butassociation of chromosome 22 abnormalities with autism is unusual. We report a child with autistic syndrome and a de novo 22q13.3 cryptic deletiondetected by FISH. Previously described cases with 22q13.3 deletions shared characteristic developmental and speech delay, but autism was not specifically reported. This case emphasizes a new candidate region that may bear a gene involved in autism etiopathogenesis. Am. J. Med. Genet.(Neuropsychiatr. Genet.) 96:839-844, 2000. Copyright 2000 Wiley-Liss, Inc. PMID: 11121193* * *

Macrocephaly In Autism And Other Pervasive Developmental Disordershttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11104344&dopt=Abstract

1: Dev Med Child Neurol 2000 Nov;42(11):737-40Fidler DJ, Bailey JN, Smalley SLUCLA Neuropsychiatric Institute, Los Angeles, CA, USA.

To assess the prevalence of macrocephaly (head circumference > or = 1.88 standard deviations above normative data for age and sex or > 97thpercentile) in autism and other pervasive developmental disorders, 41 children with autism, and a comparison group of 21 children with tuberous sclerosis complex (TSC) or an unspecified seizure disorder were studied. Familiality of head circumference was also assessed from measurements of 133 first-degree relatives. Significantly higher rates of macrocephalywere found in probands with autism (12.2%) and their first-degree relatives (15.5%) when compared against a published normative sample. The incidence of macrocephaly in the comparison group of probands with TSC and seizure disorder (9.5%)

and their first-degree relatives (8.3%) was higher than normative data as well, although the relation between macrocephaly and autism was more pronounced. Head circumference and extreme scores reflecting macrocephaly were moderately heritable in the present sample (H2 = 0.47). The increased prevalence of macrocephaly in relatives of children with autism compared with control children suggests that this characteristic may be a familial risk factor in the pathogenesis of autism.

PMID: 11104344, UI: 20552756

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CLASSIFIEDS

Positions Available working with a team providing intensive early intervention for a child with development disabilities. Experience in behavioral therapy helpful but not necessary. We will provide training. Therapy will be given in the home in the North Miami Beach area. Please call 305 495 3881.

The Friedman Commission for Jewish Education is looking for Jewish Children with Special Needs.

The YAD Program

The Friedman Commission for Jewish Education (CJE) is delighted to inform the community of an endowment, which will provide funds for a formal Jewish education program for children with special

needs.Æ

The program will help children with special needs, first grade through middle school-age, learn more

about Judaism.Æ

It is the hope of the CJE to serve those children who have learning difficulties that prevent them from

being served by existing Jewish educational programs in our community.

ÆThe CJE is looking to identify children and their

families that will benefit from this type of service as well as educators who are interested in teaching.

ÆLocation and times of the classes will be determined based on the needs of the children and their families.

For more information, call Ilana De Laney at 561-640-0700

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Reaching Out

COMPUTER RESOURCES

WEBSITES

Reaching Potentials Website:http://www.reachingpotentials.org

UM CARD Website:www.psy.miami.edu/card/

Hyperlexia Parents Group:http://www.iac.net/~whaley/gordy.html

General Autism Information:http://pages.prodigy.com/MI/dporcari.htmlhttp://web.syr.edu/~jmwobus/autism/http://134.68.79.12/AIA.html

Advocacy:http://www.wrightslaw.comhttp://www.Myerslaw.com

Autism & Lovaas Type Programs:http://web.syr.edu/~jmwobus/autism/lovaas/

Autism Frequently Asked Questions:http://web/syr.edu/~jmwobus/autism/autism.faq

ASA Website:http://www.autism-society.orgNICHY Website:http://www.nichcy.org

Asperger's Disorder HomePage:http://www.unmed.edu:8000/pub/o/ozbayrak/asperger.html

Asperger's Syndrome Resources Page:http://www.udel.edu/bkirby/asperger/

TEACCH Homepage:http://www.unc.edu.dept/teacch

Autism & Brain Development Research Lab:http://nodulus.externucsd.edu/

National Institute of Health:http://www.nih.gov/

National Alliance Autism Research:http://www.naar.org

Human Bioliogical Data Interchange:http://www.hbdi.org

CAN (Cure Autism Now) Website:http://www.canfoundation.org

NIH Grants & Contracts:http://www.nih.gov/grants/

Autism Network International:http://www.students.uiuc.edu/~bordner/ani.html

Autism Network International:http://www.students.uiuc.edu/~bordner/ani.html

Future Horizons Autism Homepage:http://www.onramp.net/autism

Insurance Appeal:http://web.syr.edu/~jmwobus/autism/lovaas/appeal.txt

Association for Behavior Analysis:http://www.wmich.edu/aba/

The Recovery Zone:http://pages.prodigy.net/damianporcari/recovery.htm

Family Network on Disabilities:http://www.fndfl.org

Edlaw, Inc.:http://www.access.digex.net/~edlawinc/

General Resource for Exploring the Web:http://www.medlib.iupui.edu/Oc:/jumpoff.html

Abstracts of Journal of Applied Behavior Analysis:http://www.envmed.rochester.edu/wwwrap/behavior/jaba/jabahome.htmhttp://www.envmed.rochester.edu/htbin/jabaif?kw=autism&ao=or&mb=&in=jaba_Tindex&mc=100

Univ. of So. FL - ABA Website:http://www.coedu.usf.edu/behavior/behavior.html

NEWSGROUPS:

Dads with Disabled Children:Listserv@[email protected]

(St. Johns) Autism & Developmental Disabilities:[email protected]

The ME-List: (a parent ABA mail list)[email protected](E-mail Ruth Allen & ask to be put on mailing list)

BECOME A REACHING POTENTIALS EMPLOYEE!! See our employment ad on page 3!

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Page 21: Newsletter - Reaching Potentials · Web viewPor otra parte, después de probar los genes de padres y otros familiares de personas con autismo, los investigadores encontraron que los

Reaching Out

COMMUNITY LECTURE SERIES

Dr. Tristram SmithINTENSIVE BEHAVIORAL INTERVEN-

TION Presented by: FAU / CARDand Reaching Potentials

February 20, 20017pm – 9pm

Live Oak Pavillion – Florida Atlantic University, Boca Raton

Advance registration is not permitted. Seating will be on a first come, first served basis.This is a free lecture – mark your calendars now!

See Page 7 for additional information

Reaching OutReaching Potentials, Inc.P.O. Box 970161Boca Raton, FL 33498

Non-Profit OrgU.S. Postage PAIDBoca Raton, FLPermit No. 1634

Inside This IssueCARD Conference & Community Lecture SeriesReaching Potentials Training Calendar Researchers Identify Gene Common in AutismThe History of the VaccineResearch Abstracts

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