You either have a diagnosis (or strongly suspect one) of Autism Spectrum Disorder* for your child.  Now what do you do? Until now, parents have fumbled in the dark because they have been given no clear steps to follow. That has now changed. Below, please take a look at the steps laid out for you.  This is a good guide to follow as you begin your journey.  There are many resources out there, but in the interest of not overloading you at this time, we are presenting what are (in our opinion) those most useful for a "Beginner".   

*Autism Spectrum Disorder or "ASD" includes Autism, Asperger's Syndrome, Rett Syndrome,  Childhood Disintegrative Disorder  and PDD-NOS. There are co-existing disorders that can appear with ASD such as, developmental delay, seizure disorders, Bi Polar Disorder, CP, Down's Syndrome, Apraxia, Obsessive Compulsive Disorder and more. We have provided limited information on these. To get more, please look at BBB Autism Support Network Website or contact the Autism Society of York Region at

What to Do First:

  1. Contact Early Intervention Services – after going through intake, also ask to be set up with an Occupational Therapist and Speech-Language Pathologist.  1-888-703-KIDS (5437)

  2. Contact Ministry of Community and Social Services (800-263-2014) – ask for applications for Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD) <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)>. SSAH provides funding for in-home parent relief. For more information, click on the link in the "How to Fill Out Forms" section, or the one provided here (point 2).

  3. If child is incontinent and over 3, contact Easter Seals to get reimbursed for diapers (416) 421-8377

  4. If child is non-verbal, contact Assistive Devices to get a discounted copy of Boardmaker (communication software using PECS) (800) 268-6021 (Toll-free in Ontario only). In Toronto, call (416) 327-8804 . Boardmaker software available through Bridges/Betacom.

  5. Contact Autism Society of Ontario (York Region Chapter) for information and outline of upcoming courses (905) 780-1590 or e-mail:

  6. If behaviors are an issue, contact York Central Hospital's Behavior Management at (905) 773-2362 

  7. Contact Kerry’s Place (Community Outreach 905-713-6808). They provide consultation to families regarding strategies for behaviour, communication, social skills etc.  Appointments available within 2 - 4 weeks at various locations throughout region. Also provide parent respite and a large lending library available to the public.


Get on these wait lists:

Kerry’s Place  - 905-841-6611

Provincial Autism Initiative (416) 326-2800; in York Region, contact Kinark

TRE-ADD (Treatment, Research and Education for Autism and Developmental Disorders) (416) 326-0608. Ask for an Intake Worker.

Geneva Centre (416) 322-7877

Bloorview MacMillan Centre  (416) 425-6220  

York Support Services Network - case management - 1- 800- 887-3679

Find even more resources and phone numbers in the York Region section of our website.

Now, what do I do?

The agencies you call will set up appointments to meet with you.  You will generally go through an "intake" process, which consists of many questions about your child and family.  After intake is complete, it is time to start asking questions for yourself. Questions you need answers to are:

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 much of this is one-on-one time with the child?

3.       Describe a typical day or session.

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

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

15.   How do you evaluate a child’s progress and how often?

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

17.   Is there a wait list? How long? What services are offered while on the wait list?

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

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

20.   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?

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

22.   Does your agency have experience with children with autism? Do you have a particular philosophy on working with children with ASD?

23.   How do you keep parents informed of the child’s progress?

Where Do I Find the Best Professional to Help My Child?

Look in the mirror!

The best advice anyone can give you right now is to become your child's case worker.  After all, there is no one on earth who knows your child better! Unfortunately, our area's services are quite fragmented, and you probably won't find an agency who will tell you who to call and/or how to proceed (unless it's within their own area of expertise).  Let's face it, wait lists are long and to avoid frustration, begin educating yourself now.  Learn how to be an advocate for your child. 

Join newsgroups and online support clubs like BBB Autism's Support Network and talk to other parents.  Learn about therapies and learn strategies on coping.  Other parents are a great wealth of knowledge and resources.

Join your local chapter of the Autism Society of Ontario.  Information about York Region's Chapter can be obtained by emailing

One of the worst things that can happen is to sink in denial for an extended period of time.  Denial will not only hurt yourself, your other children and your marriage, but will not help your ASD child.  It is okay to have a couple of dates with denial, but for heaven's sake, never marry it!



(please note: some of these agencies may charge for services)

York South Association for Community Living

Canadian Hyperlexia Association

DMV: You can get handicapped parking permit because this disorder is neurological. It helps immensely if your child has behavior difficulties (tantrums, etc) and you have to leave somewhere in a hurry.

The Hanen Centre

Advocacy office: (416)325-5669

Markham Stouffville Hospital has a Pediatric Assessment Clinic with a follow up program. call (905)472-7534

York Preschool Speech and Language Program: Beyond Words 

Hearing Healthcare Consultants (416)488-1300

Learning Disabilities Assoc. of Ontario -- great workshops on advocacy, social skills, also a wonderful lending library with excellent resources

Apraxia Ontario

Ontario Association for Families of Children with Communication Disorders advocacy; resources for getting intervention for preschool and school-aged kids



Autism Partnership - Case Management, "We provide case supervision and training to staff that parents recruit for IBI programs"

Ontario Speech and Language Association

Child Development Centre of Oakville (using Fast ForWord - and more!)

Helping Hands Kids' Therapy Centre, 121 Queen St. South, Box 313,  Tottenham, Ontario   (905)936-4400, 1(877) 534-4430

Autism Children’s Intervention Services Inc. Grace Damouni, Director/Founder - 8171 Yonge Street, Suite 226, Thornhill ON, L3T 2C6, Tel   416. 219 2316, Fax  905. 832 3139 E-Mail:


Giant Steps School (905)669-8299

New Haven Learning Centre for Children, 301 Lanor, Etobicoke, ON, M8W 2R1 (416)259-4445

Bartimaeus Inc.

Leaps and Bounds Specialized Programming for kids with PDD/Autism also respite and more! Deanna Pietramala, Director, 1100 Gorham St. # 11B 147, Newmarket, Ont. L3Y 2V1, Fax: 905-953-0589 Direct Line: 905-953-0569, email: or

York Paediatric Therapy Services, Rhona Feldt-Stein, OT, Executive Director, 10520 Yonge St. # 21, Richmond Hill, Ont. L4C 3C7 Tel: 905-737-9680 Fax: 905-737-2445 email:

Yes, I Can! Nursery School and Camp (416) 486-4911

Recommended Reading:

Let Me Hear Your Voice by Catherine Maurice  

Children With Autism: A Parents’ Guide by Michael D. Powers  

A Parents’ Guide to Autism by Charles A. Hart  

Emergence: Labeled Autistic by Temple Grandin

Special Children, Challenged Parents by Dr. Robert Naseef  

These books and many others can be ordered from Parentbooks in Toronto.

Therapies (Reading):  

Please note: Inclusion of these books does not mean that BBB Autism or the Autism Society of Ontario (York Region Chapter) necessarily endorses them. It is imperative that you do extensive research on any therapy you are considering for your child.

Behavioral Interventions for Young Children with Autism by Catherine Maurice et al (Applied Behavioral Analysis - general information plus ABA/IBI curriculum)  

Help Us Learn - Kathy Lear's exciting program will help you on your way to setting up an ABA/IBI home program for your child

Unraveling the Mysteries of Autism by Karyn Seroussi (gfcf diet + supplements)

The Sound of a Miracle by Annabel Stehli (auditory integration therapy)

Nobody, Nowhere and Somebody, Somewhere by Donna Williams (vision therapy – Irlen lenses)

Son Rise by Barry Neil Kaufman (Options Institute)

The Child With Special Needs by Stanley Greenspan (Floor Time)

Building Bridges Through Sensory Integration by Shirley Sutton, Ellen Yak, Paula Aquilla (Sensory Integration)

The Out-of-Sync Child by Carol Kranowitz (Sensory Integration)

Quick and Easy Ideas by Carolyn Rouse (communication)

More Than Words by Fern Sussman (communication)

Visual Strategies for Improving Communication: Practical Supports for School and Home by Linda Hodgdon (communication)

Solving Behavior Problems in Autism: Improving Communication with Visual Strategies by Linda Hodgdon  

A Work in Progress by Ron Leaf (ABA/IBI Plus Curriculum)

Right From the Start by Sandra Harris (ABA/IBI)

Most of these books and many others can be ordered from Parentbooks in Toronto.

Training/Parental Education:

Autism Society of Ontario (York Chapter) (905) 780-1590 or email

Geneva Centre  

Learning Disabilities Association of Ontario

Autism Partnership

BBB Autism Support Network "How To Help the Child Newly Diagnosed with Autism/PDD at Home" for more information, email us at

 Online Help:

 BBB Autism Online Support Network

Sign up for BBB Autism/Autism Society York Region's newsletter. It is packed with tips and strategies from the experts - PARENTS! E-mail Attend guest hosted chats headed by leaders in the field such as Shirley Sutton, Deanna Pietramala, Kathy Lear, Kerry's Place and more. Contact for instructions and schedules. 

Autism Society of Ontario

Autism Society of America


Autism Research Institute


Asperger Syndrome Education Network

Resources Available for Persons with Developmental Disabilities in York Region

Online Parent Mentoring: check out BBB Autism Buddies!

Special Education:

Special Education in Ontario (Ministry of Education)

Lindsay Moir and Associates: Comhnadh Consulting - Special Education Consultant


PARENTING A CHILD WITH SPECIAL NEEDS: A GUIDE TO READINGS AND RESOURCES - This is a wonderful resource for all parents of newly diagnosed children.

Autism Primer: 20 Questions and Answers

Special Needs Kids Children who have a disABILITY deserve to be treated just like any other child. As a parent, how can you accomplish this and at the same time get the support that you need?

Autism Resources - Methods, Treatments, Programs

Communication Made Easy

BBB Autism

ParentBooks Located in Toronto, this store stocks a vast amount of books on special needs. You can also order online.

The Help Us Learn system can help you set up your own home ABA program.  A curriculum can be ordered from Eden Services.

Graduate Beginnings picture communication

How Do I Fill Out Forms for Funding?

A great place to start is Project Rainbows Suggested Guidelines, which provides some guidelines for filling out SSAH and ACSD form.  Ask your Early Interventionist for help with this project.  You may think you don't need the government's financial help, but please consider and take everything that is offered to you!

Project Rainbow Suggests the Following Guidelines for Completing Annual Applications for

The Special Services At Home Program (revised 11/99): 

What is Special Services At Home (SSAH) & Assistance For Children With Severe Disabilities (ACSD)?

Both are funding programs available to families caring for children and/or adults with developmental and/or physical disabilities (N.B. Individuals over the age of 18 with significant physical disabilities, capable of ‘directing own care’ may qualify for funds through the Ministry of Health’s Attendant Care program). Funds are provided by the provincial office of the Ministry of Community & Social Services and are administered regionally. Funds are intended to pay for extraordinary costs associated with a disability.  

Assistance For Children With Severe Disabilities ACSD (formerly Handicapped Children’s Benefits-HCB)

The ACSD program is income-tested and requires a separate application requesting information about expenses, etc. and may assist with additional costs for those who qualify. Additional information and applications can be obtained by contacting your local office for the Ministry of Community & Social Services. 

Consistent with the changes adopted in the recent document, Making Services Work for People, the ministry has begun a new process for reviewing and approving SSAH applications. The goal is to provide a more equitable and accountable system. Applications for funding and subsequent approvals will be assessed on equity. Information should reflect the following three components:

  1.    level of functional loss

2.    family supports

3.    community supports in place, i.e. school, day program, Homecare, etc 

To receive support through the SSAH program, families should, whenever possible, submit one application annually, anticipating their needs for the entire year including: Family Relief & Support and Personal Development & Growth hours, including recreational programs, extraordinary program fees, camp one-to-one support, etc.. Remember to include Christmas Holiday, March Break and summertime.  

When the application has been reviewed (8-12 weeks) and if an approval is granted, families will have an amount of money for a specified one year period. The agreement can be flexible, i.e. approved funds are not necessarily restricted to the number of hours recorded on the initial application. A subsequent authorization form (MCSS) will not designate itemized amounts of money for camp costs, etc. For instance, within the SSAH parameters (e.g. not to be used for educational support, therapy, day programs or paid to family members) families can choose to use their funds in the best way that suits their situation at the time.

Documentation must accompany the SSAH application at the time it is sent, detailing your child's disability. A psychological report (as well as any additional assessments if available) is imperative for approval. Reports should be recent (i.e. completed in the last two years).

 Please ensure you have completed all necessary information, and have signed the back of the form. For additional assistance, Project Rainbow staff would be happy to help you (416-503-0088x17) during regular business hours.


(Completion Guidelines—01/00) 

The following guidelines have been prepared by Project Rainbow staff to assist families when completing the revised (MCSS) Special Services At Home Application form (Nov/99). The new application form will be used across the province and does not require any ‘Supplementary Information’ forms. Old application forms including supplementary information forms should not be used. 


Although adequate space is not provided in the new application form, it is becoming increasingly important for families to accurately reflect a child’s needs and illustrate how the request for funds will positively affect the individuals’ (applicant) development and the family’s (including siblings) quality of life. To do this, you may need to attach an additional sheet of paper. Consider using other professional’s (i.e. Teacher; Speech Pathologist; OT/PT reports, etc.) recommendations to substantiate requests.  

Because camp opportunities are both ‘Personal Development & Growth’ and ‘Family Relief & Support’, families may want to send a progress report (optional for respite funds) to substantiate a request for service, particularly if the request is new or an increase over previous years. 

Question 1A—Following is a short list of Goals & Accomplishments that may be relevant to a progress report that supports camp requests:




Increased independence

Stayed for 1 week at residential camp


Dresses with fewer prompts

Learn new skills

Learned many camp songs


Paddles a canoe


Improved swimming abilities

Improve social skills

More talkative; eager to express verbally/vocally


Waits more patiently; more settled


Renewed interest in siblings/peers


1B—Family request for paid support.

 The numbers and figures presented (below) are only to demonstrate how the equation is transferred to the SSAH Application format. Your current family situation may warrant more or less hours, etc. It is very important that your request be based on real needs vs. what the ‘average’ family may receive. Every family situation is unique and (family or applicant’s) needs are subject to change. Your request must include all hours that you anticipate for the entire year including any recreational programs. 


N.B. Families will want to provide sufficient details as to how the funds will be spent. Consider attaching a separate sheet of paper as the space on the application is inadequate.  

A. 8 hours per week for 52 weeks = 416 hours

@ $10.00/hr

TOTAL = $4160.00 

B. 6 hours per week for 52 weeks = 312 hours

@ $10.00/hr = $3120.00 &

20 days @ $50.00 (i.e. Project Rainbow Summer Camps—see below) = $1000.00

TOTAL = $4120.00 

  1. 4 hours per week for 42 weeks = 168 hours

@ $10.00/hr = $1680.00 &

24 hours per week for 10 weeks (i.e. summer) = 240 hours

@ $10.00/hr = $2400.00

TOTAL = $4080.00 

  1. 4 hours per week for 39 weeks = 156 hours

@ $10.00/hr = $1560.00

20 hours per week (i.e. Christmas, March Break & Summer) for 13 weeks = 260 hours

@ $10.00/hr = $2600.00

TOTAL = $4160.00 

Sample Per Diems for Project Rainbow Participating Programs (1999/2000)


Day Camps

Residential Camps

Toronto; York Region; Durham

YMCA Camps (Toronto Island, Sports, Arts, Aquatics) $55.00/day

Magic Forest (North Toronto, 3-7 yrs) $45.00/day; Harbourkids $55.00/day;

Pal-O-Mine $50.00/day

Seneca College (King City & Newnham) $50.00/day

Across Ontario


YMCA Camps (Kelso, Sports, Arts, Junior camp [4-6 yrs])


U of T Erindale (Sports, Arts)


Per diems range from $25.00 per day to $45.00 per day.


YMCA (Bronté Creek-Sports, Arts, Explorers, Sneaker, etc)


An average request for funding might be 7-14 days @ $35.00.


Note: Per diems (i.e. daily cost of support counselor to work with your child at camp) vary according to the camp program. Sample requests have been provided below. You may request day camp support, residential camp support, or both. Funding approval may vary according to the individual ministry office. 


Question 2A—This question was developed in response to family feedback about forms being “too negative” and “deficit-focused”. It is intended to allow MCSS staff to have a more complete picture of your son/daughter. It is not intended as a way of decreasing the amounts of supports eligible.

Questions B,C,D,E,F --Where it says “check how often or check the amount…”, it can be read as “needed/required” which is frequently more that what may actually be “provided”. You may also want to look at broad categories and measure from your child’s weakest level.

When students have 1:1 support in the classroom, parents may want to include this, particularly when it supports (B) Personal Development & Support and (C) Supervision (safety, etc.). 

Question 2D—repetitive behaviours should be noted here. Parents may want to elaborate, i.e. allowing an individual to engage in repetitive behaviours, by its nature is solitary and can be hard to break/interrupt after prolonged periods, etc.


Question 2E--Additional lifting for positioning; activities; in/out of car, etc. should be added here, even though it is not listed as an example except as ‘mobility’.

Remember to use sections provided for additional information. 


Remember to give details including:

younger siblings


other child with disability or emerging concerns

another adult (spouse or aging parents) requiring care because of illness, frailty etc.

spouse with health problems

recent marital separation

 Remember to use section provided for additional information. 


Your answer here should reflect the nature of the support, for instance, the help from a volunteer or neighbour may be ‘as requested’ or more of a ‘spontaneous’ nature rather than something consistent and dependable that you could count on daily, weekly, i.e. every Monday night, from 6:00 - 9:00pm.


Question 5A--MCSS is requesting relevant information on services received within the past year, e.g. for a 12 year-old, you need not list daycare/nursery.

See Other… If your son/daughter is involved in a recreation program with paid support, (i.e. SSAH hours) it should be noted in this section

Question 5B—When using nursing agencies, families should reflect the actual costs involved as they are considerably higher. If they are not reflected, you may be in a situation of using twice as many hours to cover the costs of specialized supports.

Question 5C--For qualifying families, Assistance for Children with Severe Disabilities (ACSD) (formerly Handicapped Children’s Benefits--HCB) provides a monthly allowance to families with total combined income of less than $57,000.00 (approximate) for a family of 4. Income rises slightly with more dependents. Contact MCSS for more information and an application.


Relevant signatures by family and release of information to other agencies or professionals involved with your son/daughter.

Notice of the Right to Review Decisions when families are dissatisfied with the amount of funds approved by MCSS, they have the right to appeal.  Appeals are very important. Recently, some families in Ontario have gone as far as the Provincial Ombudsman’s Office with SSAH complaints. As a result of these cases, the Ombudsman’s office has been paying particular attention to how appeals are handled, etc. 


A General Beginner's Guide to Autism : Features links and recommended reading along with a glossary of terms and a guide to a few of the most used therapies for your young ASD child.

BBB Autism/Autism Society of Ontario York Region Chapter E-Newsl: 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 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.

To order or for more information, email

Very Low in Cost:

Support from the Autism Society of Ontario (York Region Chapter). For information on how to meet other families and much more, contact Small yearly fee to join allows you to attend our workshops at an even lower cost.

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 for more information.

87: July 23, 2002



Please contact ASO York Region Chapter if you are having problems locating pediatricians, dentists, naturopaths, chiropractors etc.


(c) BBB Autism - August 2001

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:

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, service providers, agencies 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 web sites or in the books, and specifically disclaim any liability for any information contained on, or omissions from, these books or websites.  Reference to these websites or books herein shall not be construed to be an endorsement of these 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.


 Please note: These telephone numbers, web site addresses and the information provided within are subject to change without notice.

BBB Autism Support Network is not responsible for information found on the websites we are linked to or the books we list.