Connecting With Other Families
As a first step, we encourage parents to contact their Provincial or Territorial Autism Society. Many have regional chapters, and you will be given contact information for the chapter in your region. The societies represent a diverse group of parents, family members and others affected by ASDs. They offer support, a listening ear and an open exchange of ideas and assistance in choosing the most suitable supports and treatments for your child.
The Internet is also a good way to connect with other families. There are over 1,000 autism email and chat groups for parents. These range from the email discussion list from St. John's University, the ME-List for ABA therapy, to autism and enzymes, ABMD - autism biomedical discussion, and others that deal with alternative therapies, home schooling, having girls with ASDs, and many other topics... see Resources and Links: Families and Caregivers.
The Autism Society of British Columbia (ASBC) is currently developing an excellent information package with provincial information for parents and caregivers some of which might be easily adaptable to situations in other parts of the country. Information includes sample letters, requests, feedback responses, etc. see the ASBC website for more information.
Government sponsored services will fall under different ministries in each province and territory and the programs will have different names depending where you live. Generally services for people with ASDs are run through provincial ministries of education, health, human resources and child/family/community services.
The Canadian government provides a single access point for information on disability-related programs and services: Persons with Disabilities Online. Here you will find links to all provincial and territorial programs, benefits and services for persons with disabilities.
Education is the Best Tool
For parents and family members of newly diagnosed children, becoming educated about ASDs is crucial in order to help in the education and development of your child or youth with an ASD.
Stay informed about current information on autism. See the Resources listed below for current web links and written information on various topics related to ASDs. You may wish to subscribe to the free daily autism newsletter called the Schafer Autism Report - Resources and Links: Families and Caregivers. It includes research, treatment, advocacy, news and a monthly calendar of upcoming ASD events. If you have the time and resources, you can also attend Upcoming Conferences and Events on autism.
See also... Approaches to Treatment and Education.
Learn from Experience
There are also other autism organizations, some of which are dedicated to autism treatment. The largest network of these organizations is FEAT, or Families for Early (or Effective) Autism Treatment. They are organizations of families who support autism treatment, most often provided in the form of Applied Behaviour Analysis (ABA) from which Early Intensive Behavioural Intervention (EIBI) has been developed.
ABA/EIBI has the largest body of scientific evidence supporting its methodology as an effective treatment for autism. It is a system of teaching the skills that are so challenging for many children with autism to acquire.
Unfortunately, finding professionals with the proper training and experience to provide intensive treatments such as ABA/EIBI and other educational programs is not easy. Because there are no national standards for training and/or service delivery of effective programs, there is a serious lack of available professional expertise in Canada for parents and caregivers to choose from. In many smaller towns and rural areas there are no service providers.
Treatment at Home
Some parents, who cannot afford and/or access professional consultants and therapists, purchase parent training manuals and do a great deal of work on their own. The use of professional consultants and therapists is highly recommended, but families can accomplish a lot themselves with accurate guidance.
Training and support systems for parents and caregivers will be an important part of any effective program or treatment for the child with an ASD. Parents, siblings, extended family and friends play very important roles in reinforcing the techniques of treatments such as ABA/IBI, speech therapy and other therapies at home, especially in play situations. Playing is the most important way for all pre-school children to learn and play is vital in teaching language, communication and social skills. Parent manuals are available and there are email treatment support groups. It is tremendously helpful to be able to talk to other families using the same methods who may be going through similar challenges. See also... Resources and Links: Families and Caregivers and Provincial and Territorial Societies.
Choosing Non-ABA/EIBI Treatments
ABA/EIBI has been heralded in best practices documents as the core element in a comprehensive treatment program. However, research indicates that about 10% of children with autism show little response to EIBI, so other effective treatment methodologies may be helpful for these individuals. You may find a non-ABA/EIBI autism treatment program in your region. It is recommended that families look most seriously at treatment methodologies that are endorsed in published autism best practices documents.