BBB AUTISM SUPPORT NETWORK AND AUTISM SOCIETY ONTARIO YORK REGION CHAPTER

PRESENT

THE E-NEWS!    THE E-NEWS!   THE E-NEWS!    THE E-NEWS!      THE E-NEWS!

VOLUME 5; ISSUE 1                                                                                    MAY 8, 2002

INTERVENTIONS FOR AUTISM/PDD

PART ONE  

Hi Everyone

The cause of autism is unknown and thus is open to many different types of theories ranging from environment toxicity, to viral infections, and biochemical to developmental imbalances. Seizures and other co-existing nervous system and digestive system imbalances are common. Some children with autism  respond to subtle energy interventions and communications, such as Sensory Integration and augmentative communication. Some children respond to nutritional interventions and some to behavioral education. Most seem to benefit from a combination of approaches. 

It is probable that autism is not caused by a single agent, thus the same treatments will not have the same success for every child.

A common thread that seems to run through many successful treatments is parental/caregiver involvement. Take a look at the therapies listed here and in the next issue and you’ll see that behavioral, sensory-based and biological often include the parent administering therapy in some way.

Many of us have heard of (and use) IBI/ABA, Sensory Integration, GFCF diet, DAN! Protocol and Speech Language Therapy but the idea of this E-News issue is to provide a brief overview of some of the other therapies out there.

Next issue, we’ll review even more interventions.

If you have tried any of these (or any not mentioned), we’d love to hear from you.  A follow-up issue written by parents* about their experiences with therapies is in the works and contributions are welcomed!

NOTE: Some of these treatments are considered controversial.  Inclusion in this issue does not constitute endorsement.  We do believe you have a right to know what is out there and with that in mind, hope you find this latest issue informative. The contents are not to be taken as medical or professional advice, but to be used as a starting point in your research.

Also please note that some of the therapy descriptions have been adapted from websites endorsing said therapy.  Please keep this in mind in your quest for information! J

Bee Cool,

Liz

* The follow-up issue is limited to parent contributions only.

I would like to credit Autism Network Resources for Physicians Website.  This site helped me with descriptions and links to some of the lesser-known interventions and is very helpful!

CONTRIBUTE TO AN UPCOMING e-news ISSUE: We are looking for input on an “all about siblings” issue.

- Have you told your "NT" child about your ASD child's dx? How old were they at the time? How did you do it (i.e. straight out, used ASD books etc)?

- If you did opt to tell your NT child (ren), did they ask questions? How do they describe autism to their peers?

- Have you decided to not tell the NT sib(s) about your child (ren's) diagnosis? If so, why? Have they asked questions?

What are your thoughts on this topic in general?

IN THIS ISSUE...

* Introduction/Updates
* Therapies part one
* Information on BBB Autism’s New “How to Help the Child Newly Diagnosed with Autism/PDD at Home” * workshops.
* Upcoming dates for workshops
* Reading about therapies; books recommended by parents
* Evaluating Therapies by B.J. Freeman
* News and Reminders from Autism Society Ontario York Region Chapter
* Behavior Management Course in York Region
* New DAN! Doctors in York Region
* New Education Survey from York Region’s ASO
* Helpful Links
* Coming Next Issue
* Subscription Information
* Disclaimer

Do You Have a Group of Parents With Newly Diagnosed Children in Ontario Effected by Waitlists?

BBB Autism’s newest feature is a workshop for this group entitled “How to Help the Child Newly Diagnosed with ASD/PDD at Home” (Help@Home).  After a successful trial run, We are proud to announce that this presentation has been honored with positively encouraging feedback and attendance.

We discuss issues such as:

  1. Questions we all have when starting out
  2. Parents as case managers and advocates
  3. PDD vs. Autism – are they different?
  4. Parent stories, advice, experiences
  5. Wait lists, places to call
  6. Funding, funding and more funding!
  7. Creatively funding a Home Program
  8. What is IBI?
  9. Utilizing behavioral intervention in every day life.
  10. Other therapies – an overview designed to introduce families to what’s available
  11. How to tell if a therapy is working
  12. Why a home program?
  13. What changes after age six? What remains the same?
  14. Discussions, role plays

Included is a great handout packed with resources, service, agency and local vendor brochures, ideas, articles and more.  This workshop was designed by the parent of a child with ASD; with input from hundreds of other families and addresses what the family needs to know when beginning their journey.

It runs for an entire day or two evening sessions.  Please contact us for pricing and more information. Workshop may be customized to suit region and audience. To contact us, click the BEE icon below or email mailto:liz@deaknet.com.

ATTENTION: UPCOMING HELP@HOME WORKSHOPS

Monday and Tuesday June 3rd and 4th from 10:00 am to 2:00 pm at the Loyal True Blue and Orange House, 11181 Yonge Street, Richmond Hill (north of Elgin Mills)

- or –

Saturday, June 15th from 9:30 to 5:00pm (same location)

Brought to you by Autism Society Ontario York Region Chapter!

To register, for pricing or to ask questions, email mailto:liz@deaknet.com

Please note: Our children our precious to us. We always substitute their real names for an initial (unless otherwise requested).  Additionally, we never include last names of contributors (or any personal information) without permission.

DISCLAIMER: May contain links to other sites. We are not responsible for the contents of those sites.

... important messages from Autism Society Ontario and York Region Chapter ...
Hi everyone,

Here is a wonderful opportunity to participate in an ASO survey on education. This information will be included in ASO's Newslink - but in the meantime please forward this message onto parents of school-age children with ASD in Ontario - it will give us a tremendous amount of useful information to assist us in our awareness & advocacy efforts in the area of education. Thanks to Kathryn Everest and the York Region ASO chapter for their efforts in pulling this together!

PLEASE RESPOND BEFORE JUNE 1st.

Don't delay. Go to survey, now!

COMING IN PART TWO:
1.       Hyperbaric Oxygen 2.       Facilitated Communication 3.       Medications 4.       Cranio-Sacral Therapy
5.       Melatonin 6.       Holding Therapy 7.       Play Therapy 8.       Music Therapy
9.       Pivotal Response Training (P.R.T.) 10.    Di-Methyl-Glycine (DMG) 11.    Hippotherapy 12.    Feingold Diet
13.    Fast ForWord 14.    Temple Grandin’s “Hug   Machine” 15.    Higashi (Daily Life Therapy) 16.    Cod Liver Oil
17.    Earobics 18.    Dolphin Therapy 19.    EEG Biofeedback 20.    Enzymes
21.    Ambient Lenses 22.    Essential Fatty Acids 23.    Ojibwa Tea of Life  

Although we’ve provided a short description of some autism/PDD interventions here, it is of utmost importance that you do full research on any therapy you try with your child. Some of these descriptions are adapted from website selling products, so be aware there may be a slant there! Be smart, be cautious, ask for input from doctors, team members, and professionals and be educated.  Also, be aware that some of these therapies are costly. 

To obtain more information on these interventions and others, search the Internet by inserting “therapy + autism” into your search engine. This list is, by no means exhaustive.

*       Floortime
Information about this popular intervention can be found in the book “The Child With Special Needs” by Stanley Greenspan, MD and Serena Wieder, PH.D. The book provides a comprehensive approach to developmental challenges including autism/pdd and many other related disorders. The authors show how to move beyond labels to observe the unique profile of the individual child. They also discuss how to develop the skills needed to help the child reach key milestones and develop new emotional and intellectual capacities. The Floortime approach helps parents use playful interactions to teach and reach their children.

Greenspan's view of autism (which he prefers to call "multisystem developmental disorder") is thoroughly developmental. He faults most interventions for zeroing in on the initial problem area observed during diagnosis -- motor, sensory, behavioral, language, etc. -- rather than conceiving the child's challenge in terms of a broad set of developmental processes across all areas.
The Child with Special Needs by Stanley Greenspan, MD and Serena Wieder, PH.D. ISBN: 0-201-40726-4, Addison Wesley Longman

*         The Miller Method®
From their website: “The Miller Method®: A Cognitive-Developmental Systems Approach for Children on the Autism Spectrum addresses children's body organization, social interaction, communication and representation issues in both clinical and classroom settings.  The Miller Method® uses two major strategies to restore typical developmental progressions: One involves the transformation of children's aberrant systems (lining up blocks, driven reactions to stimuli, etc.) into functional behaviors; the other is the systematic and repetitive introduction of developmentally relevant activities involving objects and people. Activities are chosen to fill developmental gaps. This process is facilitated by narrating the children's actions while they are elevated 2.5 feet above the ground on an Elevated Square and similar challenging structures. Elevating the children enhances sign-word guidance of behavior and body-other awareness as well as motor-planning and social-emotional contact. It also helps children transition from one engaging object or event to another or from object involvement to representational play.

Parents play an integral role in the program by generalizing the children's achievements at the Center to the home and elsewhere.”

*         Auditory Integration Training (AIT)

A method of changing a person's sensitivity to sound at different frequencies. It was originally developed to combat the onset of some kinds of deafness, but was tried on an autistic child and cured her. Since then it has not produced any cures, but has been credited with success in reducing some of the symptoms of some children. In particular, some autistic children show a strong aversion to some sounds, and with Auditory Integration Training have lost their aversion and exhibited other reductions in the symptoms of autism. There are two methods of AIT, the Tomatis and the Berard. They are different enough that they should perhaps be considered different therapies.

 

*         The Tomatis Method
A kind of AIT developed by Alfred Tomatis. Over several weeks, the person listens to classical music with the low frequencies filtered out. Over time, voices (also filtered) are introduced, then the missing frequencies. Treatment requires weeks, typically 2 hours of listening a day. By stimulating the auditory system, and through it, by stimulating the brain, the Tomatis Method has reportedly been able to reduce the autistic symptoms to varying degrees.  Each individual with autism is different and may respond differently to the program. In some cases first results were reported within a few weeks, whereas in others it may take longer. Also, progress is never a straight line. There are still good days and bad days. But the trend is often upward, especially when you look back over a period of a few months.

When an individual with autism is hypersensitive to sounds, they attempt to treat this first. When this stumbling block is taken away, they try to help them to start listening better. It also opens the way to improve sensory integration.  These two elements, improved listening skills and better sensory integration, are the building blocks to develop their communication skills. 

  *          Berard Method

Auditory Integration Training (AIT), an intervention developed in France by Dr. Guy Berard, addresses the hearing distortions, hyper acute hearing and sensory processing anomalies which cause discomfort and confusion in learning disabled and developmentally delayed children. AIT seeks to retrain the auditory system for those having an impairment of auditory discrimination or abnormal auditory perception. Introduced to the United States in 1992 through the Georgiana Institute, AIT has now been given to thousands of individuals with beneficial results in the areas of educational and behavioral difficulties.

The book “The Sound of a Miracle; A Child’s Triumph Over Autism” by Annabel Stehli details a pioneering mother’s efforts to help her daughter using this method. 
The Sound of a Miracle by Annabel Stehli ISBN: 0964483815, Georgiana Organization Inc
The Georgiana Institute

*         Samonas Sound Therapy
Samonas Sound Therapy is a processing of therapeutic music that provides direct stimulation to the middle ear, cochlea, auditory nerve and cerebral cortex and indirect stimulation to the entire central nervous system. Samonas Sound Therapy teaches an individual to listen and trains the auditory system so that the full range of sound can be processed without distortion, hypersensitivity or frequency loss. This auditory training aids in the processing of language while eliminating the distractions of ambient sound. The data strongly suggests that this auditory input improves overall neurological function and hemispheric communication, and that it should prove to be beneficial for most who wish to explore its use. Samonas is relatively inexpensive compared to most sound treatments. It is provided in a series of compact disks, which through a specified treatment protocol can be done within the home.  

*          Son Rise (Options Institute)
Barry Neil Kaufman's books, Son-Rise (Warner Books, 1976) and Son-Rise: The Miracle Continues (H.J. Kramer, 1995), documentaries of the grueling process he and his wife, Samahria Lyte Kaufman, underwent to help their severely autistic son, Raun. Kaufman literally locked himself in a room with his son for hours on end for almost three years, observing Raun, following his lead when he could perceive an initiative, and trying to "bring him back to the world." 

Raun Kaufman is grown now, and has graduated from college.  The Kaufmans remain heavily involved in the treatment of autism; however, through the Options Institute in Sheffield, Mass. Satellite centers have recently opened in Holland and the U.K. Although the Options program is quite expensive, some parents say it has been helpful.  Its primary principles are unconditional love and acceptance.

*         Irlen Lenses (Vision Therapy)

Involves using colour filters to alter the contrast between the words and the page.  Once the proper colour has been determined through an extensive screen, overlays of that colour are placed over the page while reading.  In many cases, tinted glasses are recommended, though these can be expensive. Although the treatment is simple, the results are often very dramatic.  The use of the colour filters will allow a person with Irlen Syndrome to read for long periods without discomfort.  The ability to read for long periods of time and recognize words quickly is greatly increased, enabling the affected individual to more effectively practice reading, one of the most important elements in learning how to read.
Nobody, Nowhere (ISBN: 0380722178, Avon Books (Pap Trd)) (Irlen Lenses)

Somebody, Somewhere (ISBN: 0812925246, Times Books) both by Donna Williams (Irlen Lenses)

 

*          Chelation of Mercury
The use of a chemical called EDTA (ethylene diamine tetraacetic acid) has been used for decades. Probably 700,000 people have benefited by this technique. Chelation therapy, administered by a properly-trained physician and given in conjunction with lifestyle and dietary changes with the use of specialized nutritional supplements, is an option to be seriously considered by persons suffering from coronary artery disease, cerebral vascular disease, brain disorders resulting from circulatory disturbances, generalized atherosclerosis and related ailments which lead to senility and accelerated physical decline. And now, autism.

Clinical benefits from chelation therapy vary with the total number of treatments received and with the severity of the condition being treated. More than 75% of patients treated have shown significant improvement from chelation therapy. More than 90% of patients receiving 35 or more treatments have benefited when they have also corrected dietary exercise and smoking habits, which are known to aggravate arterial disease. Symptoms improve; blood flow to diseased organs increases, need for medication decreases, and the quality of life improves.
Chelation of Mercury by Amy S. Holmes, MD
Dimercaptosuccinic Acid (DMSA), A Non-Toxic, Water-Soluble Treatment For Heavy Metal Toxicity by Alan L. Miller, N.D.

*          Vitamin B6 and Magnesium

Bernard Rimland conducted an experimental study of the use of megavitamin therapy on autistic children, concentrating on vitamin B6 and magnesium. The double-blind placebo-controlled crossover experiment utilized 16 autistic children, and produced statistically significant results.

In both studies the children showed a remarkably wide range of benefits from the vitamin B6. There was better eye contact, less self-stimulatory behavior, more interest in the world around them, fewer tantrums, more speech, and in general the children became more normal, although they were not completely cured.
Autism Research Institute article
Kirkman Labs

*          Epsom Salts Baths

Many parents swear that a nightly soak in Epsom Salts helps calm their child with autism down and promotes a good night’s sleep. The most comprehensive package of information you can get on this can be obtained by emailing us at mailto:liz@deaknet.com and requesting the BBB Autism Guide to Epsom salts.  Ask for yours today (no charge applies).

*     The NIDS (neuro-immune dysfunction syndrome, a condition which encompasses Autism, PDD, Asperger's Syndrome, chronic fatigue syndrome, and ADD/ADHD) Medical Research Advisory Board is a group whose mission is to access new therapeutic modalities for NIDS in children. They believe that these children are suffering from a medical condition rather than a developmental condition, and have formulated protocols for physicians and pharmaceutical companies to use in the treatment of NIDS patients.

The proposed protocol includes a series of testing, including lead level, candida titer, allergy food screen, and rubella titer. Course of treatment is based on the test results and patients history, but can include dietary modifications, treatment for immune system, and SSRI's, which increase blood flow to the brain. The testing recommendation can be viewed at Dr. Goldberg's website, which can be done by your own pediatrician or Dr. Goldberg (whose office is in Tarzana, California). Dr. Goldberg’s Website  

*          Secretin

Victoria Beck took her young son for a routine gastrointestinal test in 1998.  In the days following, her son was suddenly able to do many things he was previously unable to due to being severely affected by autism.  She tried to establish what could have caused this and discovered the hormone secretin was used during these tests.  A great deal of publicity followed when in October 1999, Beck appeared on Dateline. 

Secretin is a natural substance, produced by all mammals. While it is not a drug, the FDA nevertheless requires that it be sold only by prescription. Secretin is usually given by slow injection (infusion), but there are other methods of administration, which are being considered. The only FDA-approved use for secretin is in the diagnosis of gastrointestinal problems, not as a treatment for any disorder.

There are very few physicians who have used secretin to treat autistic children and these physicians do not wish to be identified, because using secretin as a treatment has not been specifically approved by the FDA, and because these physicians are concerned that they will not be able to deal with a flood of new patients. Finding a physician who will infuse secretin is therefore a problem. Another problem may be the availability of secretin.

Parents reported benefits such as: --eye contact, awareness, sociability, speech, and so forth. An unexpected benefit, better sleep, was a write-in, mentioned by many parents but not included among the choices we provided on the SOS form. Several children began sleeping the night through on the night of the infusion.

Many hospitals conducted double blind trials of secretin but there has never been any real encouraging results.  Bernard Rimland and many of the DAN! Practitioners still tout it and many parents believed it was the ‘magic pill’.

 

*          Verbal Behavior

The term "AVB" is shorthand for a program of applied behavior analysis that focuses on teaching verbal behavior through a collection of highly effective teaching procedures taken from the science of behavior analysis. AVB is IBI, plain and simple. (according to the Christina Burke website).

 

 

*          Social Stories
Many persons with autism have deficits in social cognition, the ability to think in ways necessary for appropriate social interaction. For example, theory of mind describes the difficulty autistic individuals have in assuming the perspective of another person. This can be addressed by a technique, which is used to help individuals with autism 'read' and understand social situations. This technique, called 'Social Stories,' presents appropriate social behaviors in the form of a story. It was developed by Carol Gray and seeks to include answers to questions that autistic persons may need to know to interact appropriately with others (for example, answers to who, what, when, where, and why in social situations).
Comic Strip Conversations by Carol Gray, Future Horizons; ISBN: 1885477228

*       TEACCH Treatment and Education of Autistic and related Communication Handicapped CHildren
TEACCH is not a teaching or learning system, but a behavioral management system, which, when properly implemented delivers more predictable behavior and greater cooperation from the TEACCH subject. TEACCH helps the child learn self-care skills and it prepares the child and the family for some degree of lifelong institutional involvement. TEACCH uses structure and modified environment to teach skills, using the affinity for routines and rituals to teach and reinforce.

*       Picture Exchange Communication System (PECS)
The Picture Exchange Communication System  (PECS) was developed as augmentative/alternative training package that allows nonverbal children and adults with autism and other communication deficits to initiate communication. It was created with educators, residential care providers and families in mind, and so it is readily used in a variety of settings. Verbal prompts are not used, thus building immediate initiation and avoiding prompt dependency. The system goes on to teach discrimination of symbols and then puts them all together in simple "sentences."  Children are also taught to comment and answer direct questions.

LINKS

The Edelson Center for Environmental and Preventative Medicine
Autism Treatments
Autism Resources: Methods, Treatments, Programs
Treatments and Therapies
Quackwatch – Questionable Treatments  

READING ABOUT THERAPIES/EDUCATION RECOMMENDED BY PARENTS

*       Behavioral Interventions for Young Children with Autism by Catherine Maurice et al ISBN: 0890796831, Pro Ed (ABA/IBI plus curriculum) *       Making a Difference: Behavioral Intervention for Autism by Catherine Maurice, et al, Pro Ed; ISBN: 0890798710
*       The Child with Special Needs by Stanley Greenspan, MD and Serena Wieder, PH.D. ISBN: 0-201-40726-4, Addison Wesley Longman (Floortime)
*       The Autistic Child: Language Development Through Behavior modification by O. Ivar Lovaas (ABA/IBI), Irvington Publishers: distributed by Halsted Press; ISBN: 0470150653
*       Teaching Developmentally Disabled Children: The Me Book by O. Ivar Lovaas, Univ Park Pr; ISBN: 0936104783 (ABA/IBI)
*       Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi ISBN: 0684831643; Simon and Schuster (dietary intervention for autism)
*      Special Diets for Special Kids by Lisa Lewis ISBN: 1885477449; Future Horizons (dietary)
*      Understanding the Nature of Autism: A Practical Guide by Janice E. Janzen, Therapy Skill Builders; ISBN: 0761643796
*     The Sound of a Miracle by Annabel Stehli ISBN: 0964483815, Georgiana Organization Inc (Auditory Integration Training)
*     Nobody, Nowhere (ISBN: 0380722178, Avon Books (Pap Trd)) (Irlen Lenses)
*     Somebody, Somewhere (ISBN: 0812925246, Times Books) both by Donna Williams (Irlen Lenses)
*     Son Rise (ISBN: 0446342823, Warner Books) (Options Institute)
*     Son Rise: The Miracle Continues (ISBN: 0915811618, JH Kramer, Inc) both by Barry Neil Kaufman (Options Institute)
*       A Miracle to Believe in by Barry Neil Kaufman, Doubleday; ISBN: 0385149913 (Options Institute)
*       The New Social Story Book: Illustrated Edition by Carol Gray, Future Horizons; ISBN: 188547766X
*       Comic Strip Conversations by Carol Gray, Future Horizons; ISBN: 1885477228
*       Building Bridges Through Sensory Integration by Shirley Sutton, Ellen Yak, Paula Aquilla 132 Queens Drive, Weston, Ont Canada, M9N 2H6 Fax:  416-249-2909 (Sensory Integration)
*       The Out-of-Sync Child by Carol Kranowitz ISBN: 0399523863, Berkley Publishing Group (Sensory Integration)
*       Quick and Easy Ideas by Carolyn Rouse ISBN: 1884135331, Mayer Johnson (Communication)
*       More Than Words by Fern Sussman ISBN: 0921145144; Hanen Centre (Communication)
*       Visual Strategies for Improving Communication: Practical Supports for School and Home by Linda Hodgdon ISBN: 0961678615, Quirk Roberts Publishing (Communication)
*       Sensory Integration and the Child by Jean Ayres ISBN 0874241588; Western Psychological Services (Sensory Integration)
*       Solving Behavior Problems in Autism: Improving Communication with Visual Strategies by Linda Hodgdon ISBN: 0961678623, Quirk Roberts Publishing (Communication/Behavioral)
*       A Work in Progress by Ron Leaf ISBN: 0966526600, DRL BOOKS (ABA/IBI)
*       Right From the Start by Sandra Harris ISBN: 189062702X, Woodbine House (ABA/IBI)
*       Teach Me Language by Sabrina Freeman, Ph.D. and Lorelei Dake, B.A. ISBN: 0965756505; SFK Books, Inc. (communication)
*       Diet Intervention and Autism Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults - A Practical Guide for Parents by Marilyn Le Breton ISBN: 1853029351; Jessica Kingsley Publishers (dietary intervention for autism)
*       Biological Treatments for Autism and PDD by William Shaw, Great Plains Laboratory Inc; ISBN: 0966123816
*       Teaching Children With Autism to Mind-Read : A Practical Guide for Teachers and Parents by Patricia Howlin (Editor), et al, John Wiley & Son Ltd; ISBN: 0471976237
*       Do-Watch-Listen-Say : Social and Communication Intervention for Children With Autism by Kathleen Ann Quill, Paul H Brookes Pub Co; ISBN: 1557664536
*       A Picture's Worth : PECS and Other Visual Communication Strategies in Autism (Topics in Autism) by Andy Bondy, et al, Woodbine House; ISBN: 0933149964
*       Teaching Children With Autism : Strategies for Initiating Positive Interactions and Improving     Learning Opportunities
by Robert L. Koegel (Editor), Lynn Kern Koegel (Editor), Paul H Brookes Pub Co; ISBN: 1557661804
*       Autism Treatment Guide by Elizabeth K. Gerlach, Four-Leaf Pr; ISBN: 0963757806
*       Music Therapy for the Autistic Child by Juliette Alvin, Auriel Warwick, Oxford University Press; ISBN: 0198162766  

Evaluating Therapies

To assist parents or care givers as they evaluate different treatments, we have included this list of guidelines created by Dr. B.J. Freeman in her paper Diagnosis of the Syndrome of Autism: Questions Parents Ask.  

Principle of Evaluating Therapies of Autism

1.         Approach any new therapy with hopeful skepticism. Remember the goal of any treatment should be to help the person with autism become a fully functioning member of society.

2.         BEWARE of any program or technique that is touted as effective or desirable for every person with autism.

3.         BEWARE of any program that thwarts individualization and potentially results in harmful program decisions.

4.         Be aware that any therapy represents one of several options for a person with autism.

5.         Be aware that therapy should always depend on individual assessment information that points to it as an appropriate choice for a particular child.

6.         Be aware that no new therapy should be implemented until its proponents can specify assessment procedures necessary to determine whether it will be appropriate for an individual with autism.

7.            Be aware that debate over use of various techniques are often reduced to superficial arguments over whom
     is right, moral and ethical and who is a true advocate for the children. This can lead to results that are directly
     opposite to those intended including impediments to maximizing programs.

8.           Be aware that often-new therapies have not been validated scientifically.

    Note:           It cannot be stressed enough that you must be cautious of therapies that offer a “cure” or “complete recovery” from autism spectrum disorder.  If the therapy you are looking at is expensive, you need to take a closer look at it, asking for a breakdown in costs.

NEWS AND REMINDERS FROM ASO YORK

SUMMER POT LUCK SOCIAL

Monday June 10th, 7:00 p.m.

Thank you to hosts Paul and Janet Kalmykow for offering their home again this year.  RSVP to Janet at home, 905-473-7648 or <janetkalmykow@hotmail.com>

PLEASE CALL FOR DIRECTIONS AND TO LET JANET KNOW WHAT FOOD YOU ARE BRINGING!

ECHO is pleased to present:

Margit Pukonen, M.H.Sc., S-LP (C), Director of The Speech Foundation of Ontario - Wednesday, May 8th, 2002 7:30 p.m

Meeting location: Richmond Hill Public Library, Main Branch - Yonge and Major Mackenzie (southwest corner) Free Parking - Members: $5.00, Non-Members - $10.00, Memberships available at the door -- $15.00 per year

Margit will be speaking about the Speech Foundation, the Toronto Children's Centre, and the programs that are offered. If you have any specific questions you would like answered, please submit them in advance to apraxiaontario@yahoo.com RSVP apraxiaontario@yahoo.com

LANGUAGE FOR LEARNING - A DIRECT INSTRUCTION WORKSHOP

Brookfield Academy & Learning Centre Presents Johanna Preston Friday May 10, 2002
 -- 9:30 a.m. to 3:30 p.m. Toronto - Registration by phone - 416-767-3176 by May 1, 2002. Cost $160.00

Language for Learning is a comprehensive oral language program that teaches essential concepts and skills that children need to succeed. Direct Instruction is the teaching method used. It applies a behaviour approach to instruction and its curricula. Direct Instruction programs are "scripted" and can be purchased from SRA publishers (see SRA 4kids.com). Teaching material is provided at no additional cost due to the generosity of SRA publishing. Workshop is limited to 15 people. Contact Brookfield at 416-767-3176 or fax at 416-767-3431. 

Language for Learning" provides carefully sequenced lessons to help students.       

Outcomes you will achieve:

Learn common vocabulary as well as language used in textbooks and other instructional material

Develop precise knowledge of "little," but important, words such as first, next, between, who, what, and where

Use different sentence forms, ask and answer questions, and follow instructions

Acquire important information and knowledge, such as days of the week, months, and seasons

Learn the logical aspects of language, such as classification and

"If-then" reasoning

Learn how to do "Direct Instruction" (DI)

Review the "Language for Learning" Curriculum

Learn about DI design elements and why they are effective

Learn hand signals; correction procedures; problem solving techniques

Practice skills and receive personal feedback from workshop leader

Learn about other DI products from SRA display

Workshop cost is $160.00 - payable by Visa/ MC or cheque by May 1, 2002 to Brookfield Academy

- Venue - Toronto Preschool Autism Service: Surrey Place Centre located in St. Lucy's Catholic School at

80 Clinton Ave, Toronto (north side of College Street - 4 blocks west of Bathurst Street) on the 2nd floor.

Johanna Preston, MA - Child Study and Education; O.C.T. Principal, Lawton Learning Clinic Senior Consultant, Angus Lloyd Associates, Inc. Johanna has worked for Angus Lloyd Associates, Inc. for over four years. She currently works as the principal of the Lawton Learning Clinic, and as senior consultant for Angus Lloyd Associates, Inc. She has received training in Direct Instruction, both in specific programs and in how to train teachers to teach Direct Instruction programs through the Association for Direct Instruction (Eugene, Oregon). She has trained teachers and education professionals in both public and private schools across Ontario. She completed her undergraduate degree at the University of Toronto and her Master of Arts degree in Child Study and Education at the Ontario Institute for Studies in Education. She is a certified member of the Ontario College of Teachers.

BEHAVIOR MANAGEMENT COURSE

Presented by Behaviour Management Services, Mental Health Program of York Central Hospital & Kerry's Place Community Services Autism Consultants

June 4, 11, 18 & 25, 2002 4-consecutive Tuesday evenings from 7:00-9:00 pm at Loyal True Blue & Orange Home building, 11181 Yonge Street, Richmond Hill, ON

Please Register early as space is limited to a first come first serve basis.  Cost is $15 per person.

Register by voicemail: (905) 780-1590 or return e-mail

The Parent Education Course is geared to parents whose children are under 12 years of age.

Sessions include:
Effective communication
Motivating your child
Setting up situations for success
Effect of your behaviour on your child's behaviour
Teaching new skills

 NUTRITIONAL AND METABOLIC CONSULTANTS - DAN PROTOCOL

Dr. Cynthia Heavener D.C. and Dr. Frank Janowicz D.C., Nutritional and Metabolic Consultants For Autism Spectrum Disorders, Aurora Family Health Clinic
13 Church St., Aurora, ON (905) 727-0119

As parents of a child with a diagnosis in the autistic spectrum of disorders (ASD), it can be overwhelming trying to decipher all the therapies and options that are out there. We know because, as well as being Chiropractors and DAN! practitioners, we are also the parents of two ASD children.

When our first child, now 11 years old, was about a year old, we noticed that certain foods exacerbated his symptoms. There our quest began. For the past decade we have been researching the relationships between diet, biochemistry, and autism. We have also done laboratory testing in Canada, the U.S. and Europe and, based on that testing, have implemented dietary changes and supplement regimes. We have found this approach to be very fruitful with our own sons and with the children we have worked with. We would like to present this as a pathway you may wish to pursue.

In 1995, Dr. Bernard Rimland, director of the Autism Research Institute, brought together about 30 clinicians and researchers, all of whom had a special interest in autism spectrum disorders. Their goal was "to accelerate the development and dissemination of information that will be helpful to many families of autistic children". The conference was called Defeat Autism Now!, or DAN! From that meeting, a consensus was formed and the DAN! Protocol was published. The report outlines several laboratory tests and corresponding treatment options that have been found to be helpful for children with autism. The report is updated as new information is discovered. The latest version, entitled, Biochemical Assessment Options For Children With Autism, is the guide we use in assessing and treating ASD children.

The key point here is that we are treating children, not autism. All children are different and the approach will vary from child to child. Many of our children are not healthy. They may be pale, have eczema, chronic ear infections, gastrointestinal disturbances, mercury toxicity, or any number of health problems. Some of them may have genetically induced biochemical or metabolic abnormalities. Others may have nutritional deficiencies due to a restricted diet, or an inability to absorb some nutrients. Identifying the cause of these problems and correcting them, can often lead to dramatic changes in the symptoms of autism. One simple example is seen in serum ferritin. Serum ferritin, or blood iron levels, are often found to be low in children in the autistic spectrum. A recent study showed that low serum ferritin levels adversely affects neurological development, even in the absence of anaemia. Any child with developmental issues should have their serum ferritin checked, and iron supplements should be given if indicated.

Essential fatty acids are called essential because they are. They are especially critical in building brain tissue. In the past several years numerous studies have linked fatty acid deficiencies or impaired fatty acid metabolism with learning difficulties, including ADD and autism. This is not surprising because the brain is composed primarily of lipids (fats). An essential fatty acid test can reveal if your child is lacking the fatty acids required to build a healthy brain or if there are problems in how his or her body is metabolising their fats. Supplementation can greatly improve fatty acid biochemistry.

Allergies are a huge problem for many children in the autistic spectrum.  While some people's allergic responses are restricted to hives, others may exhibit behavioural responses. A family history of allergies, or symptoms such as red ears, chronic ear infections, gastrointestinal disturbances, dark circles under the eyes or eczema are some of the findings that would prompt us to explore the possibility of an allergic connection in your child.

In the past few years a connection has been made between heavy metal toxicity and autism. Symptoms of mercury toxicity can mimic the symptoms of autism. It is important to test each child's heavy metal levels. If the levels are high, we need to look at possible sources of contamination, as well as any impairment the child may have in his own detoxification systems. A process called chelation is effective in removing the metals, although it can take some time.

There are many other assessments, and treatment protocols in the DAN! Protocol. My goal here is to give you a sampling of what could be happening with your child. I don't mean to give the impression that there is usually a 'magic bullet' that will cure your child's autism. Most often it is a long and arduous task of determining which foods and/or supplements will bring optimum health to your child. Obviously a child will have the best chance of achieving their potential if they are healthy.

The DAN! approach to autism is an adjunct to other therapies, not a replacement. It addresses the metabolic and physiological needs of the child. In our experience, it has been exceptionally worthwhile.

GENEVA CENTRE MOVIE NIGHT

Geneva Centre for Autism will host our next movie night for individuals with Asperger Syndrome, and their guests, on Monday evening, May 27th, 2002. The feature film will be The Lord of the Rings. The Regent Theatre is located at 551 Mount Pleasant, south of Eglinton and north of Davisville Ave. Doors open at 6:30 p.m. and the movie will begin at 7:00. The movie and snack are complimentary.

Kathy Deschenes, Director of Fundraising, kdeschenes@autism.net, Geneva Centre for Autism

NEW SOCIAL SKILLS GROUP ORGANIZING FOR 5 - 7 YR. OLDS.

A new Social Skills group for 5 - 7 year olds being developed, with a planned start in September 2002.  We are collecting the names of families interested in planning, participation and further details.

CONFERENCE IDEAS REQUESTED.

An autism conference is in the planning stages. Please suggest topics and speakers that are of interest to you.

Ontario Adult Autism Resource & Support Network

ONTARIO ADULT AUTISM NETWORK OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We especially hope that OAARSN's efforts to draw attention to positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click here

GENEVA CENTRE SUMMER TRAINING INSTITUTE, GENEVA CENTRE INTERNATIONAL SYMPOSIUM

The Summer Training Institute is scheduled for August 19-23, 2002 in Toronto. Brochure may be viewed in PDF format here.

The Geneva Centre International Symposium is scheduled for October 23, 24, 25, 2002 at the Metro Toronto Convention Centre. The Symposium 2002 brochure has been mailed out and is available at here This year you have the option to register on-line; major discounts for early bird registrations. Also, for the first time, delegates from around the world can access 8 presentations of the International Symposium 2002 live through the Internet.

TEACHING VERBAL BEHAVIOUR - WORKSHOP

The following workshop is being offered by the Child Development Centre of Oakville:

Teaching Verbal Behavior: Hands-on Training for Tutors & Therapists
Presenters: Cherish Richards, BCABA and Holly Smith, BCABA (from Dr. Vincent J. Carbone, Ed.D., Florida, USA)
Dates: June 4 & 5, 2002 or June 6 & 7, 2002
Location: Hilton Garden Inn, 2774 South Sheridan Way, Oakville, Ontario
Prerequisites: Workshop #1 by Dr. Vincent J. Carbone (or equivalent)
Cost:$630.00 Canadian
Participants Limited to 20 participants per session (As May 3, 2002 - only 2 spots available for June 4/5th and approximately 6 spots available for June 6/7th, 2002)

Contact Information: Tracie Lindblad (905) 849-7993 e-mail: tracie@cdco.com, Director, Child Development Centre of Oakville, President, Four Points Inc.

The Autism Society Ontario York Region Chapter would like to thank IBM Canada Limited for their generous donation of a computer.  IBM is a corporate supporter of the ASO York Region

SUBSCRIPTION INFORMATION

To subscribe, e-mail bbbautism@deaknet.com please provide your name and location.  To unsubscribe, e-mail bbbautism@deaknet.com please write 'unsubscribe' in subject line. If you think you know someone who might enjoy or benefit from these newsletters, kindly forward us their email address at bbbautism@deaknet.com
(C) 2002 BBB Autism

Past Issues
To request, email liz@deaknet.com and indicate which volume/issue(s) you prefer. Issues are available by link in HTML, plain text and PDF. Newsletter Archives are also available on our website at  www.bbbautism.com/news_arch.htm

Volume 1; Issue 1 WELCOME ISSUE!
Volume 1; Issue 2 SUMMER CRISIS
Volume 1; Issue 3 SPOUSAL CONCERNS
Volume 1; Issue 4 SENSORY INTEGRATION
Volume 1; Issue 5 CHALLENGING BEHAVIORS
Volume 1; Issue 6 BACK TO SCHOOL
Volume 2; Issue 1 IEP
Volume 2; Issue 2 KEEPING YOUR COOL - WHEN YOUR EMOTIONS ARE ON FIRE
Volume 2; Issue 3 DEALING WITH STRESS
Volume 2; Issue 4 GIFTS FOR THE CHILD WITH ASD
Volume 2; Issue 5 ONE CHILD’S STORY – A TALE OF LOVE AND INTERVENTIONS
Volume 3; Issue 1 SURVIVING THE HOLIDAYS
Volume 3; Issue 2 HOW TO ENJOY DISNEY WORLD
Volume 3; Issue 3 PARENT (AND GRANDPARENT) PIONEERS 2002
Volume 3; Issue 4 EVERYDAY HEROES
Volume 4; Issue 1 DE-MYSTIFYING THE GFCF DIET
Volume 4; Issue 2 ACCEPTANCE AND DENIAL
Volume 4; Issue 3 EVERYDAY TIPS (PART ONE)
Volume 4; Issue 4 EVERYDAY TIPS (PART TWO)
Volume 4; Issue 5 EVERYDAY TIPS (PART THREE)

Permission to reproduce &d hand out is granted, provided the document is displayed in its entirety.  Other permissions may be requested by email: liz@deaknet.com

BBB PARENT GUIDES

CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail liz@deaknet.com and ask for: (now available in PDF format).   BBB GUIDES ARE NOW AVAILABLE IN PLAIN TEXT VERSIONS ONLINE AT: http://www.bbbautism.com/bbb_guides_contents.htm

1.      Halloween

2.      Epsom Salts (expanded version)

3.      Epsom Salts (condensed)

4.      Pros and Cons of telling your ASD child his/her diagnosis

5.      How we advocate for our children

6.      Guide to holidays and large family gatherings

A notice to our readers...

The founders of this newsletter and the BBB Autism support club are not physicians.

This newsletter references books and other web sites that may be of interest to the reader.  The editor makes no presentation or warranty with respect to the 
accuracy or completeness of the information contained on any of these web sites or in the books, and specifically disclaims any liability for any information 
contained on, or omissions from these books or web sites.  Reference to these web sites or books herein shall not be construed to be an endorsement of
these web sites or books or of the information contained thereon, by the editor.  

The editor reserves the right to make decisions as to whether contributions are appropriate with respect to content, length, etc.  We will not publish offensive material using foul language, or contributions that are inflammatory or disrespectful to decisions by other parents (i.e. therapies). We do not generally accept contributions if they are ads for private service agencies/clinics. We are also unable to accept contributions after an issue has been completed. We reserve the right to edit content, but will inform you in advance if we are going to do this. J

(c) BBB Autism - 2002

This E-News is the intellectual property of BBB Autism Support Network.

Permission to reproduce and hand out is granted, provided the document is displayed in its entirety.  Other permissions may be requested by email: liz@deaknet.com.  The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.