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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: http://www.pwd-online.ca
. Here you will find links to all provincial and territorial
programs, benefits and services for persons with disabilities.
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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.
| Choosing and
developing effective treatments and programs for children will
depend on the input of parents, families and service providers
with careful ongoing assessment of the needs and individual
strengths and weaknesses of the child...see Approaches
to Treatment and Education. |
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.
| Most parents,
teachers or other caregivers are not equipped to provide the
intense level of treatment necessary for a person with autism
without relying on the expertise offered though a recognized
program and without the support of experienced specialists.
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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. see also Professional
Resources and Approaches
to Treatment and Education.
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