BBB AUTISM SUPPORT NETWORK/AUTISM SOCIETY ONTARIO (YORK REGION CHAPTER)
Present
YOUR BEGINNER'S GUIDE TO AUTISM SPECTRUM DISORDER (ASD)/PERVASIVE DEVELOPMENTAL DISORDER (PDD)
TABLE OF CONTENTS
1. Introduction and Support - in which we provide some definitions to terms and acronyms you will find and suggest some methods of support, talk about getting started, we've included some good links and recommended reading.
2. Applied Behavioral Analysis - is a popular, well documented method of therapy for children with ASD. Provided are resources and recommended reading.
3. Communication - is not just about talking. There are plenty of kids with ASD who speak...but are they communicating? In this section, we will examine "echolalia" (a pattern of speech afflicting many with this diagnosis) and PECS, a method of communication widely used.
4. Sensory Integration Dysfunction - many children with ASD experience these difficulties. Provided are links, reading and some hints to help.
5. Nutritional Information (GFCF Diet and more)- There are hundreds of inspiring stories of parents and children who've had success with this intervention. We will give you the scoop on some great beginning information
6. Other Therapies - Just a list of links to other therapies. No descriptions, this is purely for your own research.
Please be sure to order your copy of "BBB Autism Support Network/Autism Society of York Region Beginner's Guide to Autism in York Region". To do so, send email with "request beginner's York region" in the subject line to liz@deaknet.com.
To subscribe to; or to order past copies of BBB Autism Support Network/Autism Society of York Region's Online Newsletters, email liz@deaknet.com and indicate which volume/issue(s) you prefer
1. Introduction/Support
A big part of supporting families dealing with Autism Spectrum Disorder (ASD) is helping those new to the diagnosis understand, find information on, and ultimately accept it (accepting is not the same as giving up). This document was conceived to help these families. You will find this a great tool to refer back to again and again.
It is split up into six main categories. In each, you will find some good but limited information on each, it is up to you to take this farther. Consider this document a starting point for your travels. Click on the hyperlinks to be taken to a different site with more information on a topic. Also, please remember that we are not doctors, and that all links, books etc may not have been personally checked out. Many of them come as recommendations and submissions from other families such as yours. Please be smart and check everything out fully before embarking on a long expensive therapy. Beware of anyone stating they have a cure or that their therapy can be used for all children with ASD. Do not do anything that seems to cause your child pain or that you feel uncomfortable about.
A Dictionary of Terms/Acronyms
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ABA or IBI - Applied Behavioral Analysis or Intensive Behavioral Intervention - see below section |
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Advocate - someone who takes action to help someone else (as in "educational advocate"); also, to take action on someone’s behalf. |
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ASD - Autism Spectrum
Disorder: This is the umbrella under which the various autism
disorders are found. Disorders found
under the ASD or PDD umbrella are:
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Assessment - a collecting and bringing together of information about a child’s needs, which may include social, psychological, and educational evaluations used to determine services; a process using observation, testing, and test analysis to determine an individual’s strengths and weaknesses in order to plan his or her educational services. | ||||||||||||
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CHAT - A diagnostic tool to help screen for autism at 18 months of age. | ||||||||||||
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Childhood Autism Rating Scale or CARS - Diagnostic tool used in assessing ASD/PDD in young children | ||||||||||||
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Cognitive - a term that describes the process people use for remembering, reasoning, understanding, and using judgment; in special education terms, a cognitive disability refers to difficulty in learning. | ||||||||||||
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Co-existing Disorders: In addition to cognitive impairments, individuals with ASD often suffer from multiple psychopathologies. These include impulse-control disorders, psychoses, obsessive-compulsive disorder, seizures, mood and anxiety disorders, and developmental delays. Also called Co-morbid Disorders or Differential Diagnosis. | ||||||||||||
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DAN - Defeat Autism Now | ||||||||||||
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DAN Doctor - Physicians utilizing the DAN Protocol | ||||||||||||
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Developmental - having to do with the steps or stages in growth and development before the age of 18 years | ||||||||||||
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Developmentally Delayed (DD) – a term used to describe the development of children who are not able to perform the skills other children of the same age are usually able to perform. | ||||||||||||
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DSM-IV - The fourth edition of the manual published by the American Psychiatric Association to set forth diagnostic criteria, descriptions and other information to guide the classification and diagnosis of mental disorders. | ||||||||||||
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Dx or dx - diagnosis | ||||||||||||
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Early Intervention Program - a program in which problems that have been discovered in a child’s development are remediated before the child’s later development and learning are seriously affected. | ||||||||||||
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Echolalia- A term referring to the repetition of words or phrases. Echolalia may occur immediately after the phrase has been said, or may be delayed and occur some time afterward. | ||||||||||||
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FEAT - Families for Early Autism Treatment | ||||||||||||
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GFCF - Referring to the Gluten and Casein free diet | ||||||||||||
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IDEA (U.S.) - Individuals with Disabilities Act | ||||||||||||
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Individual Education Plan or IEP - A special education program is defined as an educational program that is based on and modified by the results of continuous assessment and evaluation. It includes a plan (I.E.P.) containing specific learning objectives that meet the ongoing needs of the exceptional pupil. | ||||||||||||
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Identification, Placement and
Review Committee or IPRC
- At this meeting, the
I.P.R.C. will consider the recommendation of the in-school team and may
discuss:
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The Committee will use this information to determine the pupil's identification (exceptional or non-exceptional) according to Ministry of Education and Training criteria. The committee will decide an appropriate placement for the pupil.
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Mainstreaming - a term referring to the time during which a special education student participates in chronologically age-appropriate regular education activities, either academic or non-academic (e.g. math and reading or lunch, recess, and art). |
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Multidisciplinary - a team approach involving specialists in more than one discipline, such as a team made up of a physical therapist, a speech and language pathologist, a child development specialist, an occupational therapist, or other specialists as needed. |
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O/T - Occupational Therapist - see below section; Sensory Integration |
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PDD - Pervasive Developmental Disorder: Another umbrella term often misused by professionals, and, therefore parents as a diagnosis. Using this term as a diagnosis in itself is like saying "You have a broken bone" instead of "You have a broken leg". If your professional gives you this diagnosis, insist s/he be more specific. Not the same as PDD-NOS. |
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PECS - Picture Exchange Communication System |
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Private Therapist - any professional (therapist, tutor, psychologist, etc.) not connected with the public school system or with a public agency |
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Psychologist - a specialist in the field of psychology, usually having a Master’s degree or Ph.D. in psychology. |
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SLP - Speech-Language Pathologist - see below section; Communication |
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Special Education (sped) – instruction or education that is required to meet the needs of children with special needs that cannot be supplied through some modification in the regular education program. |
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Special Education Advisory Committee or SEAC (Canadian) - Makes recommendations to the Board in respect of any matter affecting the establishment and development of Special Education programs and services for exceptional pupils of the Board |
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Stim or Stimming - short for self-stimulation, like rocking or tapping |
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Syndrome
- Generally,
a number of characteristics, features, events or behaviours that
seem to go with each other or are believed to be coordinated or
interrelated in some way. More specifically, in medicine and
clinical psychology, a cluster of symptoms that occur together
and can be taken as indicative of a particular disease or other
abnormality |
Getting Started
Contact Early Intervention (for preschool age)
Find a Speech-Language Pathologist (SL-P)
Find an Occupational Therapist to determine if there is a sensory integration problem
Arrange for a neurologist to administer an EEG to rule out seizure disorder
Look at some different therapies/interventions; more on this later
Join a support group for parents of kids with ASD. If necessary, get counseling for yourself. This is a challenging road and you may need some help.
Find out about receiving respite.
Surf the Internet...do research...read books...talk to other parents. A great place for manuals and books is ParentBooks. Located in Toronto, this store stocks a vast amount of books on special needs. You can also order online.
Love your ASD child, while making sure to remember your spouse and other children, as well as yourself. You are important to your child's successes, don't ignore your own health or well-being.
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Plain Talk About PDD and the Diagnosis of Autism by Bernard Rimland, Ph, D. - Are you confused about the difference between PDD and autism? This very direct paper will help clear up the confusion. |
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Pervasive Developmental Disorders, Finding a Diagnosis and Getting Help by Mitzi Waltz |
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Pretending to be Normal: Living with Asperger's Syndrome by Liane Holliday Willey |
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Children with Autism; A Parent's Guide by Michael D. Powers Psy.D. |
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A Parent's Guide to Autism by Charles Hart |
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I am Special; Introducing Children and Young People to their Autistic Spectrum Disorder by Peter Vermeulen |
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Let
Me Hear Your Voice : A Family's Triumph over Autism by Catherine
Maurice |
2. Applied Behavioral Analysis (ABA) or Intensive Behavioral Intervention (IBI)
Applied Behavior Analysis is a science which seeks to use empirically validated behavior change procedures for assisting individuals in developing skills with social value. The procedures used in intensive behavioral intervention programs for children with autism are drawn primarily from the rich base of research generated by practitioners of ABA. The constellation of procedures typically includes use of "discrete trial instruction" but is not limited to that method of instruction. Terms which denote the comprehensiveness of the intervention include intensive behavioral intervention (IBI), behavioral therapy, and behavioral treatment. Currently, ABA intervention for children with autism consists of a tremendous amount of structure and reinforcement provided at high intensity using precise teaching techniques. This type of intervention is most accurately referred to as intensive behavioral intervention.
Discrete trial therapy may also be called the "ABC model," whereby every "trial" or task given to the child to perform consists of:
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Antecedent:
a directive (SD)
or request for the child to perform an action |
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Behavior:
a response from the child — including anything from successful
performance, non-compliance, or no response. |
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Consequence:
a reaction from
the therapist, including a range of responses from strong positive
reinforcement, faint praise, or a negative reaction (i.e. "no" ). |
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Right From the Start: Behavioral Intervention for Young Children with Autism - A Guide for Parents and Professionals by Sandra L. Harris, Ph. D. and Mary Jane Weiss, Ph.D. |
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Behavioral Intervention for Young Children with Autism by Catherine Maurice et. al. |
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A Work In Progress by Ron Leaf and John McEachin |
LINKS
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Applied Behavior Analysis - report from ABC News |
Buy ABA/IBI Materials Online
Some useful tools include The Eden Curriculum (which will help you determine what to teach) and the Help Us Learn System (a great plan on how to set up your program, how and who to hire, financials, setup, graphs and much more).
3. Communication: PECS - Picture Exchange Communication System and More
The Picture Exchange Communication System (PECS) was developed 12 years ago as a unique augmentative alternative training package that allows children and adults with autism and other communication deficits to initiate communication. First used at the Delaware Autistic Program, PECS has received worldwide recognition for focusing on the initiation component of communication. PECS does not require complex or expensive materials. It was created with educators, resident care providers and families in mind, and so it is readily used in a variety of settings.Boardmaker is a library of bit-mapped clip art which includes the Mayer-Johnson Picture Communication Symbols (PCS). Boardmaker is also a drawing program. It allows parents and school staff and others to produce communication boards and device overlays relatively quickly. These boards can be saved and modified as necessary. Symbols can be modified and combined to best meet your child's needs.
How can you define communication problems in autism? According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the main features of autism include the presence of markedly impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests. Impairment in communication is also marked and sustained and affects both verbal and nonverbal skills. There may be a delay in, or total lack of, the development of spoken language. In individuals who do speak, there may be marked impairment in the ability to initiate or sustain a conversation with others, a stereotyped and repetitive use of language or idiosyncratic language. If speech does develop, it may have abnormal pitch, intonation, rate, rhythm and/or stress patterns.
What is echolalia?
Echolalia is the repetition or echoing of verbal utterances made by another person. According to Prizant (1983) up to 75% of verbal persons with autism exhibit echolalia in some form. There are two types of echolalia: immediate echolalia and delayed echolalia. Immediate echolalia was once defined as "the meaningless repetition of a word or word group just spoken by another person" (Fay & Schuler, 1980). However, Prizant & Duchan (1981) and others have begun to see that echolalia may serve many functions for the person with autism (therefore, it is not "meaningless"). Read the rest of this fascinating piece here: Echolalia and Autism by Gary J. Heffner, M.A.
Recommended Reading
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Quick and Easy Ideas to Help the Nonverbal Child "Talk" at Home by Carolyn Rouse and Katera |
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Teach Me Language by Sabrina Freeman, Ph.D. and Lorelei Dake, B.A. |
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More Than Words by Fern Sussman |
Links
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Do2Learn - A web site providing activities to promote independence in children and adults with special learning needs |
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Order Online
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Pyramid Products - Communication Products |
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Silver Lining Multimedia - Communication Picture Cards |
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Boardmaker - Communication Picture Cards for Picture Exchange Communication System (PECS) |
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Communication Made Easy - customized picture communication books |
A therapy or treatment provided by an occupational therapist that helps individual development of physical skills that will aid in daily living; it focuses on sensory integration, on balance and coordination of movement, and on fine motor and self-help skills, such as dressing, eating with a fork and spoon, etc. Given when assessment shows that motor and perceptual difficulties interfere with classroom performance
Recommended Reading
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Building Bridges Through Sensory Integration by Shirley Sutton, Ellen Yack and Paula Acquilla |
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The Out-of-Sync Child by Carol Stock Kranowitz |
Links
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Sensory Integration Activities for Kids and Problems with S.I. |
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My Experiences with Visual Thinking Sensory Problems and Communication Difficulties by Temple Grandin, Ph.D. |
Order Online
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5. GFCF Diet, Supplements and Enzymes
GFCF Diet Support includes tons of information, a message board and more. The best resource on this topic on the Internet. Kirkman Labs, the place to order supplements and 'scientific nutrition for autism and pdd'. Some of these products to look into are: DMG, SuperNu Thera, Peptizyde and Pepcid.
There are tests that can determine whether the diet would be helpful to your child. Be aware, please, you must send to the states to have this done and it can cost money. As far as I know, there is no simple blood or urine test that your doctor can do. You can get stool analyzed here: Great Plains Laboratory.
Recommended Reading:
Links
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An Experimental Intervention For Autism Understanding and Implementing a Gluten & Casein Free Diet by Lisa S. Lewis, Ph.D. |
Note: BBB Autism Support Network website has a number of articles on this subject. Simply click on PDF files. These articles are in a handy, printable format. Check out our entire section on nutritional approaches.
(note: this list is by no means exhaustive, if you'd like information on something else you'd like to try or if we've inadvertently left something out, please advise. liz@deaknet.com)
It is important to know that many of the therapies listed below are controversial, some have been discredited over recent years. Again, please note the fact that an intervention is listed here is by NO means an endorsement. It is of utmost importance that you do full research on any therapy you try with your child. Be smart, be cautious, be educated. For a more extensive list, check out the Therapies section of the BBB Autism website.
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LINKS
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A notice to our readers...
The Autism Society of Ontario (York Region Chapter) and the BBB Autism Support (ASOYRC and BBB) Network are not physicians.
This guide references books, articles, therapies and websites that may be of interest to the reader. The ASOYRC and BBB make no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these websites, articles, therapies or in the books, and specifically disclaim any liability for any information contained on, or omissions from, these books, articles, therapies or websites. Reference to these websites, therapies, articles or books herein shall not be construed to be an endorsement of these articles, therapies websites or books or of the information contained thereon, by the ASOYRC and BBB.
We do not necessarily represent the views of the Autism Society of Ontario or any of the other agencies listed here. This document is based on parent feedback and experiences. Information is not intended to be taken as medical advice.
We do not endorse any specific therapy or intervention; but we DO endorse your RIGHT to know about it!
Permission to reproduce and hand out is granted, provided the document is displayed in it's entirety.
Other permissions may be requested by e-mail: liz@deaknet.com
ALSO AVAILABLE TO HELP YOU ON YOUR JOURNEY:
A Beginner's Guide to Autism for the Preschooler in York Region: Features local resources along with links and recommended reading. A simple to follow step-by-step document on what to do (and who to phone) now you have a diagnosis for your child.
BBB Autism/Autism Society of Ontario York Region Chapter E-Newsletter: Twice monthly newsletters packed with stories, strategies, articles, links and recommended reading from professionals and parents alike. Also contains announcements of online specialty chats and workshops/courses/presentations in the York Region area.
BBB Autism Online Support Network: Want to meet other parents online? You can discuss strategies, triumphs and bumps in the road with our fantastic members. BBB Autism offers many unique features all free of charge. Please check our website which includes over 1200 links to information about ASD and many contributions by parents. We also provide parent matching/mentoring and specialty chats featuring well-known guests in the ASD world answering questions on topics that parents want to hear about.
AVAILABLE IN YORK REGION
Support from the Autism Society of Ontario (York Region Chapter). For information on how to meet other families and much more, contact asoyork@axxent.ca.
Parent Empowerment Courses: A fantastic series of workshops, presentations and courses developed by parents of autistic kids, topics came out of a reader poll and resulted in subjects parents know parents want to hear about. Practical and very cost effective, please contact asoyork@axxent.ca for more information. These take place in York Region.
146: July 24, 2002
