STARTING OUT: A BEGINNER'S GUIDE FOR PDD/ASD 
IN PRESCHOOLERS IN YORK REGION (workshop 008)
Presented by 
Margo Allen, Early Intervention Services, 
Darlene Spence, York Behavior Management Services and 
Liz C., Parent and BBB Autism Support Network Founder  
February 5, 2002

This was a two-part presentation.

(Return to Part One)

PART TWO "STARTING OUT A GUIDE FOR PARENTS OF PRESCHOOLERS WITH PDD/ASD IN YORK REGION"
presented by Liz C.

Contents:

1. What are some of the types of services needed that can benefit preschool children with autism and their families?

2. Developmental Assessments/Diagnoses - Where to go

3. Services and Funding

4. Wait Lists

5. Respite

6. Summer Programs

7. Treatment Centres

8. Therapies/Interventions

9. How to Evaluate Autism Therapies/Interventions

10. Questions to ask Service Providers

11. Training and Parent Education

12. Parent to Parent Support

13. Asking for Help

14. Online Help

15. Government Funding Programs

16. Disability Tax Certificate: Form T2201

17. A Glossary of Terms/Acronyms

18. What is BBB Autism Support Network?

1.    What are some of the types of services needed that can benefit preschool
       children with autism and their families?

Please note: The information in this handout (i.e. phone numbers, addresses) is subject to change without notice. Some agencies or
private providers may have been inadvertently overlooked here. If you notice that we are missing someone, kindly contact us at
liz@deaknet.com, and we will gladly add them in!

 GETTING STARTED  

York Link: Find a service in York Region

2.    Developmental Assessments/Diagnosis
Markham Stouffville Hospital (905) 472-7007 
North York General Hospital (416) 633-9420
Central East Preschool Autism Services (contact Kinark) 1-888-454-6275
The Hospital for Sick Children (416) 813-1500
Thistletown Regional Centre (TRE-ADD – Treatment, Rehabilitation & Education of Autism and Developmental Delays) (416) 326-0608  

For more information on Assessments and Diagnosis, check out ASO's Workshop #007

3.    Services and Funding

Autism Society Ontario (York Region Chapter) (905) 780-1590
Bloorview MacMillan Children’s Centre (416) 425-6220
Contact Easter Seals (416) 421-8377 for reimbursement on diaper costs for children over 3. This is available through the Assistive Devices Program (800) 268-6021
Early Intervention Services 1-888-703-KIDS (5437)
Kerry’s Place Autism Services (Community Outreach 905-713-6808)
Ministry of Community and Social Services (1-877-669-6658) –for applications for Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD)
York Behavior Management (905) 773-2362
York Region Preschool Speech and Language 1-888-703-KIDS (5437)

5.    Respite

Christian Horizons (905) 775-4406
Georgina Association for Community Living (905) 722-8947
Jewish Family & Children's Services (905) 638-7800
Catholic Community Services of York Region (905) 415-9537
Newmarket & District Association for Community Living (905) 898-3000
Thistletown Regional Centre (TRE-ADD – Treatment, Rehabilitation & Education of Autism and Developmental Delays) (416) 326-0608
York South Association for Community Living (905) 884-9118

6.    Respite Programs – Summer Programs

*ASK Camp (905) 780-1590
  Shadow Lake Centre (905) 640-6432
*Camp Prospect (705) 735-0129
*Camp Winston (416) 482-1798
  Ontario Camping Guide (416) 781-0525
  Reach for the Rainbow 416-503-0088 X 17

·         Autism spectrum disorder camps

7.    TREATMENT CENTRES

Please note: some of the above centres may offer psychological assessments for a fee. Some of the above centres are fee based.

8.    THERAPIES/INTERVENTIONS

A Few Therapies/Interventions

It is important to know that some of the therapies listed below are controversial. 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, and be educated.

To obtain more information on these interventions and others, search the Internet by inserting “therapy + autism” into your search engine. 
Even if you don’t have Internet access, most public libraries offer this service for free.

This list is by no means exhaustive and is in alphabetical order.

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.  

1. 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.         7. Be aware that debate over use of various techniques are often reduced to superficial arguments over who 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.

10.    QUESTIONS TO ASK SERVICE PROVIDERS

1.     What services, interventions and/or therapies are offered by your agency? (i.e. Occupational Therapy, case management, communication, transition to school, etc)

2.     How many hours per week do these services require and how many hours of them are provided directly by your agency?

3.     Describe a typical day or session.

4.     What experience do the teachers and/or therapists have in working with children with an ASD?

5.     What experience does the person who supervises the program have? How closely does the program supervisor work with the therapists, teachers and parents?

6.     What kinds of ongoing training do your full- and part-time staffs participate   in?

7.     Are parents involved with planning as part of the intervention team?

8.     Do you provide a parent training program?

9.     How much and what kinds of involvement are expected of the parents and family members?

10. Are parents welcome to participate in or observe therapy and and/or group sessions?

11. What techniques do you use to manage difficult behaviors?

12. Do you ever use physical aversives or any physically intrusive procedures? If yes, please describe them.

13. Does your representative work specifically with the child, or do they train the parent to work with the child?

14. Is there currently a wait list for your services, if so, how long?  Do you offer any services to parents while on your wait list? How do you manage your wait list?

15. How long typically does it take for your agency and it’s representatives to return telephone calls? Emails? Faxes?

16. Are you set up to handle crisis situations?

17. Do you provide transition to school?  Will you work with the parent to understand the system with respect to things like IPRC, IEP, etc?

18. Please describe your program for communication and language development. Do you use a picture communication system, sign language other kinds of communication systems, or all of these? How do you determine which is best for my child?

19. Are there opportunities for integration with typical and/or higher functioning children?

20. How do you evaluate a child’s progress and how often? How do you keep the parent informed about the child’s progress?

21. How are services delivered? (Do they come to your home or do you go to their location?)

22. Are costs involved? If so, how much? How are you billed? Is there an income dependent sliding scale for prices?

23. Does your agency offer help to find other resources? (i.e. finding ABA/IBI therapists, private schools, etc.)

24. Does your agency refer callers to other agencies that may provide different services?

25. Does your agency offer a list of parent support groups, or offer parent support meetings?

26. What does your agency offer to help with integrating my child into the community?  Help with learning self help skills? If not, can you recommend a program/agency?

27. What other (parent, sibling) courses does your agency offer?

11.    Training and Parent Education

Autism Society Ontario - York Region Chapter (905) 780-1590
Geneva Centre for Autism  (416) 322-7877
Learning Disabilities Association of Ontario (905) 884-7933
Autism Partnership (416) 410-7125
Bloorview MacMillan Children’s Centre (416) 425-6220
York Behavior Management Services (905) 773-2362
Early Intervention Services  (888) 703-5437

12.    Parent-to-Parent Support

Autism Society Ontario - York Region Chapter (905) 780-1590
Geneva Centre for Autism  (416) 322-7877
York Behavior Management Services (905) 773-2362
Early Intervention Services  (888) 703-5437

13.    Asking for Help

Warm Line - Non-crisis support line (416) 685-7480

Sometimes, stress and burnout can reach critical levels.  If this is the case, contact the Crisis Line at 310-COPE (2673).

14.    Online Help

15.    GOVERNMENT FUNDING PROGRAMS

Ministry of Community and Social Services (1-877-669-6658) –for applications for Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD).

More Help from our Government

16.    Disability Tax Credit Certificate: Form T 2201 by Arthur Shlanger, Treasurer, York Region Chapter

No matter how high functioning our child may be, autism and PDD are severe impairments, which will last for a lifetime. If the doctor will not check off they your child has a severe impairment, then either get the doctor to change his answer on the T2201 for to 'severe' or take the form to another doctor who understands autism and PDD and will answer to your child's impairment as being severe. Also, make sure that your physician fills out the disability form including that the disability occurred at birth.

If you have not filed a form T2201 previously, and knowing that your child had autism or PDD from birth, you can file a form T1-ADJ, (T1 Adjustment. Request for taxation years as far back as 1986.

If you need the T2201 or T1ADJ form or other information, please feel free to contact me at 905-660-5526.

17.    A GLOSSARY OF TERMS/ACRONYMS

AAC = Augmentative and Alternative Communication
ABA or IBI - Applied Behavioral Analysis or Intensive Behavioral Intervention see Chapter 2
ACSD = Assistance for Children with Severe Disabilities (formerly Handicapped Children’s Benefits or HCB) see chapter 5
ADP = Assistive Devices Program
Advocate - someone who takes action to help someone else (as in "educational advocate"); also, to take action on someone’s behalf
ASD - Autism Spectrum Disorder (see PDD): This is the umbrella under which the various autism disorders are found.  Disorders found under the ASD or PDD umbrella are:

Autism (also known as Classical Autism)
High Functioning Autism (sub-group of Autism) or HFA - similar to Classic Autism, but less numerous or less severe characteristics. Often confused with or included as PDD-NOS, below. Until much stricter definition of these terms is accepted, ambiguity will continue.
Rett Syndrome - affecting females only. Similar characteristics to autism, but includes reduced head growth and usually profound mental retardation.
Childhood Disintegrative Disorder (CDD) - where characteristics similar to autism develop later in childhood
PDD-NOS - Pervasive Developmental Disorder - Not Otherwise Specified - Is a 'sub threshold' version of autism, or another PDD, where not enough of the characteristics are present, or not to a sufficient degree to warrant a more specific diagnosis. Also called Atypical Autism or Atypical PDD.
Asperger's Disorder (also known as Asperger's Syndrome or AS) - A higher functioning disorder under the ASD umbrella, kids with AS often go undiagnosed until older. AS is marked generally by social awkwardness and perseveration on topics or activities.

ASA – Autism Society America
ASK – Autism Society Kids – day camp developed by York Region Chapter ASO
ASO – Autism Society Ontario
ASO YRC – Autism Society Ontario - York Region Chapter
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.

BMS – Behavior Management Services

CAPD – Central Auditory Processing Disorder

CCAC – Community Care Access Centre

CEPAS – Central East Preschool Autism Services

CHAT - A diagnostic tool to help screen for autism at 18 months of age.

CAN – Cure Autism Now

Childhood Autism Rating Scale or CARS - Diagnostic tool used in assessing ASD/PDD in young children

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.

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.

CPI – Crisis Prevention and Intervention

DAN - Defeat Autism Now

DAN Doctor - Physicians utilizing the DAN Protocol

Developmental - having to do with the steps or stages in growth and development

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.

DMG – DiMethyl Glycine

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.

DS – Down Syndrome

DSI – Sensory Integration Dysfunction

DTT – Discreet Trial Teaching

Dx or dx - diagnosis

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.

EIS – Early Intervention Services

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.

FC – Facilitated Communication

FEAT - Families for Early Autism Treatment

GACL – Georgina Association for Community Living

GDD – Global Developmental Delay

GFCF - Referring to the Gluten and Casein free diet

HOH – Hand over hand

IBI or ABA – Intensive Behavioral Intervention or Applied Behavioral Analysis see Chapter Six.

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.

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:

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.

KPAS – Kerry’s Place Autism Services

LD – Learning Disabled

LFA – Low Functioning Autism

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).

MCSS – Ministry of Community and Social Services, aka COMSOC

MMR – Measles, mumps and rubella vaccine

MOH – Ministry of Health

MR – Mentally Retarded

MRI – Magnetic Resonance Imaging

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.

O/T - Occupational Therapist - see below section; Sensory Integration

PDD - Pervasive Developmental Disorder (see ASD): An umbrella term, which is not a specific diagnosis in itself. (see “Autism Disorders”) Not the same as  PDD-NOS.

PECS - Picture Exchange Communication System; protocol itself, developed by Lori Frost and Andrew Bondy

PCS – The actual pictures used in a picture communication system (i.e. PECS) can be photos, line drawings, computer programs, etc.

Private Therapist - any professional (therapist, tutor, psychologist, etc.) not connected with the public school system or with a public agency

Psychologist - a specialist in the field of psychology, usually having a Master’s degree or Ph.D. in psychology.

SLP - Speech-Language Pathologist.

Special Education (sped or spec ed) – 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.

Special Education Advisory Committee or SEAC - 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

Stim or Stimming - short for self-stimulation, like rocking or tapping  

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 disorder
TBI - Traumatic Brain Injured
TEACCH - Treatment and Education of Autistic and Related Communication Handicapped Children
TOD - Teacher of the Deaf/Hard of Hearing
TRACK - Therapeutic Riding Association for Challenged Kids
TRE-ADD - Treatment Rehabilitation Education of Autistic and Developmentally Delayed – Thistletown Regional Centre
TS - Tourette Syndrome
TVI - Teacher of Visually Impaired
TX - Treatment
VI - Visually Impaired
VIT B6 Mag - Vitamin B6 with Magnesium (as in Super NuThera)
WAC - Writing Aids Clinic
YCDSB - York Catholic District School Board
YRDSB - York Region District School Board (public)
YSACL - York South Association for Community Living
YSSN - York Support Services Network
WNL - Within Normal Limits

Return to part one

18.    WHAT IS BBB AUTISM SUPPORT NETWORK?

If you answered yes to any of these questions, email me! I can introduce you to a network of families who know what you are going through and are here to help. Any time of the night or day…you don’t have to wear makeup, fix your hair or even brush your teeth… J

liz@deaknet.com