Announcing the Adult Autism Needs Survey
 
Why a survey?

OAARSN 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 at http://www.ont-autism.uoguelph.ca/pdf/vulnerable.pdf
A great deal has changed during the 1990s, but adults with autism are still among our most vulnerable citizens.
 
 

Which survey?

As a free public service, OAARSN offers two versions of needs survey.

1. The short 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.

2. 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.

How is your privacy protected?

Please 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?

1. 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. 

2. 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 goals. 

3. 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 form.

4. 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

We 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. 

You 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. 

A printed 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 

Guelph Services for the Autistic (GSA) 
16 Caribou Crescent 
Guelph, Ontario, Canada, N1E 1C9 

The short version of the Adult Autism Needs Survey has 14 questions
[to complete the short survey, click here
 

The long Adult Autism Needs Survey has six parts, as follows: 

1: BASIC PERSONAL INFORMATION (7 questions)

2: UNDERSTANDING YOUR ABILITIES AND CHALLENGES (12)

3: YOUR PRESENT LIFE CIRCUMSTANCES (18)

4: TREATMENTS AND THERAPIES (3)

5: QUALITY OF LIFE (2)

6: PLANNING FOR THE FUTURE (16)

[to complete the long survey, click here


 
 
 
 
 
 
 

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