Autism News Network

New Parent Packet, continued

Books

Summary of "Educating Children with Autism"

•   Written by the 14-person Committee on Educational Interventions for Children with Autism, convened by the National Research Council at the request of the U.S. Department of Educationís Office of Special Education Programs. (p. vii)
•   The book looks at research regarding early educational interventions on young children (up to age 8) with autistic spectrum disorders. (p.1)
•   The report addresses both narrowly defined ìautistic disorderî and autistic spectrum disorders, including PDD and Aspergers. (p.1)
•   The national challenge [addressed by the book] is to close the gap between the quality of model programs and the reality of most publicly funded early educational programs.î (p.140)
•   There is a need for greater communication about research between researchers and practitioners; many treatment approaches have not provided documentation of effectiveness. (p.13)
•    The book reviews 10 model autism programs throughout the country (see p. 140 ff)

•   Education is currently the primary form of treatment for autistic spectrum disorders. (p.1)
•   As a policy matter, a child who receives a diagnosis of any autistic spectrum disorder should be eligible for special educational programming under the category of ìautism.î (p.3)
•   Treatment should begin as soon as the disorder is suspected. (p.6)
•   The identification of autism in a child should include a formal, multidisciplinary evaluation of social behavior, language and nonverbal communication, adaptive behaviors and cognitive status by a team of professionals experienced with autistic spectrum disorders. External sources should be used in the school district does not have sufficient resources. (p. 214)
•   Information about autism and training should be provided to parents. (p. 215-16) A family component of a program should include parent training. (p. 219)

•  These use antecedents, consequences, systematic instruction and assessment. Behavioral approaches include classic discrete trial training (DTT) and more naturalistic forms of DTT such as as incidental teaching (a chain of prespecified child-tutor interactions), pivotal response training (changing pivotal behaviors that are seen as central to wide areas of functioning), and peermediated strategies. DTT has been criticized for lack of spontaneity and generalization. The naturalistic methods use the childís own motives and behavior to initiate instruction and lead to a reinforcing event; it is seen as critical to teach the child to initiate communication. (pp. 72, 133-34).
•   ABA: There is 40 years of research that testifies to the efficacy of time-limited, focused ABA methods in reducing or eliminating specific problem behaviors and in teaching new skills to children with autism. (p. 120)

These use a model of typical development to guide the educational process. (p.72). However, autistic children to not learn through developmentally typical teaching practices (verbal instruction, imitation of teachers and peers, and independent learning), because these strategies are often dependent on a childís internal motivation to learn, to be like others, and to gain competence. (p.72) For children with autism, empirical support for the success of developmental approaches is more limited than for behavioral approaches. (p. 133)

Because many autistic children do not acquire functional speech, Instruction should include visual strategies.

• PECS is shown to be effective as part of a behavioral program (p. 59). It teaches initiation, expands to multiple words and increasing from requesting to labeling to commenting.
• Visual schedules, such as those used in TEACCH. (p. 62)
• Keyboarding: the committee is skeptical about facilitated communication, but believes that in general keyboarding to communicate is a promising area. (p. 62)

  Individual therapies such as occupational therapy and speech therapy carried out infrequently (1 or2 times a week) do not have long-term value unless techniques are taught to others and used regularly in other contexts. (p.139)

•   The most important considerations in programming have to do with the strengths and weaknesses of the individual child, the age of diagnosis, and early interventions. (p. 212) Effective services will vary considerably across individual children. (p. 220) Research is needed to help predict which programs work best with which children. (p.64) There is no simple, direct relationship between any particular intervention and ìrecovery. (p. 43) Courts conclude that degree of intensity depends on the needs of an individual child. (p. 181)

•   The consensus is strong about the need for early entry into an intervention program, active engagement in intensive programming for the equivalent of a full school day, for a minimum of a full school day, five days a week (at least 25 hours), with full-year (12 months) programming; use of planned teaching opportunities organized around relatively brief periods of time for the youngest children, and sufficient amount of adult attention in 1:1 or very small ground instruction to meet individualized goals. (pp.6, 219) Repeated, planned teaching opportunities organized around brief periods of time, including sufficient individual and small group instruction to meet individual goals. (p. 219) If appropriate for the particular child, the program may include structured interaction with typically developing peers. (p.6)
•   Costs of treatment, $40k to $60k per year, lies at the heart of many disputes. A new, comprehensive system of funding is called for. (p. 181) Costs of treatment programs should be shared with other agencies. (p. 7)

•   Intensity of education is associated with amount of progress. (p.152)
•   Hours of participation do not necessarily translate to hours of time engaged in intervention. ìIntensityî is best thought of as ìlarge numbers of functional, developmentally relevant and high-interest opportunities to respond actively.î (p. 152)
•  It is generally assumed the initial skill development will be accomplished from individual instruction. Providing the child with behaviors needed to learn from group situation is a goal of early intervention. Empirically supported models use individual teaching episodes to establish basic language, social and cognitive skills. As the child learns to carry out the routine independently, 1:1 instruction and prompting is faded. (p.137)
• Severe deficits in communication require intense effort and skill even in the teaching of basic information. Lack of joint attention means individual intervention is needed to attract and sustain the childís attention. Social exchanges do not occur without deliberate planning and ongoing structuring by the teachers. Frequency of behavior problems including tantrums and stimming requires continued effort. (p. 213)

•   Primary goals of education are personal independence and social responsibility. This implies progress in social and cognitive abilities, verbal and nonverbal communication skills, adaptive skills, reduction of behavior difficulties, generalization. Priorities should be on functional spontaneous communication, social instruction, cognitive development, play skills, and behavior. (pp.5-6)  IEP objectives should include development of social skills, expressive verbal language, a functional symbolic communication system, increased engagement and flexibility in tasks and play, fine and gross motor skills, cognitive skills, reduction in problem behaviors, and independent organizational skills. Progress should be monitored frequently, and goals adjusted accordingly. (p. 218)
•   There must be mechanisms for ongoing evaluation and adjustment of childís program (p. 219)   Adaptive skills are taught with a task analysis (break down skills into component parts and teach in small steps) These include goals like purchasing skills, community living skills like ordering food, mealtime behaviors, clothing selection skills, bus riding, vending machine use, coin summation, leisure skills, independent walking, and remediation of eating disorders. (p. 103)
•   Behavior skills: Prevention of behavior problems should be a primary focus. The IEP should be based on proven interventions that have scientific evidence supporting their value. (p. 118)

•   Teachers and paraprofessionals need familiarity with the course of autism, the range of possible outcomes, and methods that fall into best practices. (p.7)
•   Personnel preparation remains one of the weakest elements toward achieving effective programming. The committee urges agencies to provide the personnel preparation resources needed for intensified efforts to build a viable support structure for educating autistic children. (p. 225-26)
•   Effective programming requires a team approach by all providers (p. 184)
•   The model programs were developed by persons with Ph.Ds an autism-related fields (p. 154). The model programs are directed and implemented by teams of professionals who have had extensive training and experience in early autistic spectrum disorder intervention. It is unlikely that similar child outcomes can be achieved if expertise in autistic spectrum disorders is not readily available. (p. 156)

Because I have received a few emails from folks asking if they can further distribute my summary of "Educating Children with Autism," National Academy Press, 2001 (see my first response to the query about the Weatherly* law firm descending on Southern Cal.), I just wanted to clarify that yes, of course, anyone may copy and distribute my summary to the extent they find it useful in advocating for appropriate educational   Jill Escher, Esq. escherlaw@yahoo.com

**Targeting Autism **  Shirley Cohen,  University of California Press, 1998

Excellent book, an great first choice to read.  Cohen has written the most balanced, comprehensive, intelligent  book on autism I have yet seen.  Fully discusses the pros and cons, histories and potentials of the major therapeutic options usually considered by parents: TEACCH, Son-Rise, AIT, sensory integration, early childhood programs, Lovaas (ABA, discrete trial, IBI) and Greenspan. (floortime)  Also includes sample writings from higher-functioning adults with autism as part of an attempt to peer into the experience of being an individual with autism.

**Pervasive Developmental Disorders - Finding A Diagnosis and Getting Help.**     Mitzi Waltz, OíReilly & Associates, 1999   ISBN 1-56592-530-0

This is a book  by a parent/journalist  that attempts to be very comprehensive and up-to-date.  Whether you are looking for information on getting an accurate diagnosis for your child, selecting the appropriate educational  or medical interventions, dealing with insurance, schools, family issues, and more, you will find Ms. Waltz has done the initial digging around for you and come up with a great deal of basic information. Heck, more than basic - she has included references to stuff not yet seen in most books on autism, such as the ìstealth virusî,  Dr. Goldbergísî work on NIDS (neuro-immune dysfunction syndrome), PANDAS, and more. I particularly think that parents who do not have internet access and/or are not able to spend time networking with other parents online will find this book the most helpful.  Iíd still rccommend you read the Cohen book too, though, for  a more in depth and balanced evaluation of educational therapies than Ms. Waltz provides.

Right from the Start
Behavioral Intervention for Young Children with Autism - A Guide for Parents and Professionals
Sandra L. Harris, Ph.D.     Mary Jane Weiss, Ph.D.
Woodbine House, 1998   (800-843-7323  $14.95)

This  is a short, easy read for harried parents about how intensive behavioral intervention can help their child diagnosed with  autism/PDD. ABA (applied behavioral analysis, the core of intensive intervention) is explained and  advice is given on how to find and evaluate a provider.  Examples are given, too,  of  the discrete trial instruction  techniques  that are relied on in basis ABA programming - along with an explanation of how and why discrete trials  work and can effectively be used to teach a child with  autism when other methods fail. Any parent with an ABA program currently in place might want a copy of this book to share with any doctors or school personnel who need enlightening as to the appropriateness of intensive behavioral intervention.

Let Me Hear Your Voice  Pro Ed., Pub. 1993
Behavioral Intervention for Young Children with Autism   Pro Ed, Pub.  1996

Both of these books are by Catherine Maurice, parent of two children diagnosed autistic,  since recovered  by the intense, home-based program of Applied Behavior Analysis (ABA)  as developed by Ivar Lovaas at UCLA.   Let Me Hear Your Voice is the well-written account of one familieís experience with autism and the search for an affective treatment for first their daughter, and, later, their second son.  The second, larger  book encompasses all aspects of setting up and running an effective, home-based intervention, and includes the overall topics of Choosing an Effective Treatment; What to Teach;  How to Teach; Who Should Teach; Practical Support- Organizing and Funding;  Working with a Speech-Language Pathologist;  Working with Schools, etc.  Anything you might want or need to know is in this book!

If you live in Illinois, alas, you will need access to the following materials on this page (trust me!)
 

Wrightslaw: Special Education Law

Peter W.D.Wright & Pamela Darr Wright
Harbor House Law Publications, 1999
P.O. Box 480, Hartfield, Virginia  23071
tollfree 877-529-4332

Why do I include the publisherís address and phone number?  Do I think you may need to get a copy of this $29.95 tome that contains not only the full text of IDEA 1997  (as finally issued in spring 1999) AND Section 504 of the Rehabilitation Act AND the Family Educational Records and Privacy Act AND text of key U.S. Supreme Court Decisions extremely pertinent to parents of special education students BUT ALSO the Wrightís own analysis and interpretation of all of the above (in marked typeface throughout] - drawing our attention to and explaining to us non-lawyer parents exactly what the law says about, for example, our participation in an IEP meeting, or  whether our schools must measure progress towards IEP goals with objective tests rather than ìteacher observationî.  What a useful tool this book could be - imagine having the complete text of IDEA  at hand to refer to during an IEP.  No more taking the school folkís word for it that you can or can not request something or write something in the IEP.  Wrightslaw also publishes a Strategy and Tactics manual which goes from theory to practice, and explains how to measure progress.  His new book is called From Emotions to Advocacy.

***** Whether you purchase the above book or not, if you are on the internet do subscribe to the Wright's free electronic newsletter , The Special Ed Advocate, which you can learn more about in their most useful website: http://www.wrightslaw.com/
 

**Better IEPs -  How to Develop Legally Correct and Educationally Useful Programs**
3rd e.Barbara D. Bateman, Ph.D., J.D.
Mary Anne Linden, M.S., J.D.
ISBN # 1-57035-164-3
Sopris West Publisher ,  www.sopriswest.com
303-651-2829

From Amazon.com website:

ìThis is the definitive guide to understanding and writing Individualized  Education Programs (IEPs). It presents a powerful, three-step process that focuses on the individual student and avoids the all too common  routinized approach to program development. This Third Edition has been completely updated and revised. It includes  the IDEA Amendments of 1997,  more examples of IEPs, and complete  guidelines for how to and how not to develop IEPs which will be  educationally useful. ì

This book, along with the Wrightslaw tome which has the full text of IDEA, etc (this book does not), is one of the few works I have actually purchased for my home library, since I believe I will find it extremely useful as an aide in preparing for, and surviving, all the  IEP meetings lurking in my childís future.  Any author can write about the need to make goals objectively measurable, etc, but in this book Bateman and Linden provide actual samples from real IEPís that make absolutely clear both what typically gets written as a goal with teacher-observed ì%î  benchmarks, and what can and should be written to provide not only a clear-cut goal and objectively measurable benchmarks but also the practical ìhowsî of fulfilling that goal. Invaluable resource! If you have to chose between the Wrightslaw book and this book buy this one and make your library purchase Wrightslaw so you can check it out as needed!

First IEP meeting not go too well?  Concerned that your child is not receiving the free and APPROPRIATE education that is her/his right?  This fifth edition of the Turnbullís text on FAPE  is a great resource for  any parent of a school-age special needs child, for not only do the authors explain what the law requires schools to provide children with disabilities and their families,  they also provide the needed information on how to obtain a truly free appropriate education for our kids.  A careful reading of this book may not make you a legal eagle, but will  at least  help you make sense of  the legal  hoops that must be jumped through as you advocate for an appropriate  education for your child. This book will help you understand current law (and under the new IDEA there have been some changes!).

You can order this book from the Exceptional Parent Library at 800-535-1910, item code  LV129ED, or ...

ask your public library to buy it, or any of the books listed in this packet, if they do not already have them.  They should. And your local reference librarian can  borrow a book via inter-library loan  from another library for you, too!  Also - the following articles may be acquired, usually for a small zeroxing fee, via interlibrary loan services even if your library does not carry the journal the article appeared in. (Trust me - my mom-in-law is a reference librarian. )  Also - StarNet and the Clearinghouse do have most of these books - and the follwing  articles -  too.
 

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