is helping to take two surveys to learn about how many people have autism
and to understand their abilities and needs. This information will help
various organizations that hope to provide the most useful support to adults
with autism and their families. The last survey of Ontario adults with
autism was taken in 1990 (and reported in Our Most Vulnerable Citizens,
published by the Autism Society Ontario and posted on the OAARSN website
great deal has changed during the 1990s, but adults with autism are still
among our most vulnerable citizens.
a free public service, OAARSN offers two versions of needs survey.
form asks only basic questions, and takes about 5 minutes to complete.
From your answers we hope to learn how many adults or older teenagers are
on the autism spectrum and the broad picture of present living situations
and day activities. This generalized information will help social service
planners and agencies to set up necessary supports. We hope everyone who
lives with autism spectrum disorders, as an affected person, or as family
member, caregiver, friend, or has responsibilities as a case manager will
complete at least basic short survey.
How is your privacy
The long form
needs about 30 minutes to complete. In addition to the basic personal data,
there are also questions about experience of various treatments and therapies,
perceptions of quality of life, and priorities in planning for the future.
The long survey is designed to be answered from the point of view of the
person with autism. Taking part in this survey may help you--as an adult
with autism or as a family member, friend or caregiver--to consider your
current situation, various treatments and therapies, and how you are planning
for the future. If you are interested in a project or service to help you
plan for adulthood and the future, such as ASPIRE in Waterloo-Wellington,
you should complete and submit the long survey form.
be assured that the results of this survey will be grouped, and your individual
responses will not be revealed to anyone else without your permission.
You can ask us to send you a summary of the general findings of this survey,
or to let you know of an autism services organization that may be able
to offer relevant support and resources in your region. For example, Guelph
Services for the Autistic and Waterloo-Wellington Autism Services have
been offering the ASPIRE project to respond to the needs revealed by this
survey for the Region of Waterloo and Wellington County-Guelph in Ontario.
Who should take
part in this survey?
A person who has any form of Autism Spectrum Disorders, and who will at
least 17 years old by 31 December 2004. For this survey, Autism Spectrum
Disorders include any of the full range of these conditions: classic autism,
Kanner syndrome, pervasive developmental disorder (PDD), Asperger syndrome,
“autistic tendencies”, or autism in some form or degree combined with another
diagnosis as well.
We are particularly interested in the points of view of persons with autism
themselves, so the long survey questions are expressed in terms of “you”
and “your.” But you (i.e., a person with autism) may be represented by
a parent, sibling, other relative, trustee or caregiver who understands
your circumstances, how you experience autism and any treatments, and your
If you, with your family and friends, are actively interested in planning
for adulthood and the future, you should complete and submit the long survey
If you have already responded to the pilot Adult Autism Needs Survey, that
has been posted on the OAARSN website since early 2001, you do not need
to complete the survey again—unless your circumstances have changed and
you wish to update your information.
How to respond
to this survey
encourage you to complete this survey electronically, on the OAARSN website
by first selecting the short or long form, then clicking the appropriate
responses, and submitting it by e-mail. This is the most efficient and
confidential way for us to store your information and also to analyze all
the responses we receive. It is helpful to have your response even if you
are completely satisfied with your present pattern of life and supports.
may wish to print out the survey first, so that you can think about your
responses, and then connect later to complete and submit them.
version of the survey may be requested by leaving a message with your full
name, address and phone number at (519) 821 7424 in Guelph-Wellington (with
a note of whether you need the short form or the long form). If you prefer
to use this or a printout of the electronic survey form, please mail your
completed survey to
Services for the Autistic (GSA)
Ontario, Canada, N1E 1C9
short version of the Adult Autism Needs Survey has 14 questions
complete the short survey, click here]
long Adult Autism Needs Survey has six parts, as follows:
BASIC PERSONAL INFORMATION (7 questions)
complete the long survey, click here]
UNDERSTANDING YOUR ABILITIES AND CHALLENGES (12)
YOUR PRESENT LIFE CIRCUMSTANCES (18)
TREATMENTS AND THERAPIES (3)
QUALITY OF LIFE (2)
PLANNING FOR THE FUTURE (16)