Adult Autism Needs Survey
 
We are taking this survey to learn more about how many people have autism spectrum disorders and to understand their abilities and needs. This information may help various organizations and support groups to provide the most useful supports to adults with autism and their families. 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 well you are planning for the future. Please know that the results of this survey will be grouped, and your individual responses will not be revealed to anyone else without your permission.
 
Q1 Initial letters of first and last names of person with autism (e.g., AB for Adam Brown)
 
Q2 Date of birth of person with autism in year/month/day order (e.g., 1978-05-06 for 6 May 1978)
 
Q3 Gender of person with autism
 
Female
Male
 
Q4 Your name (person completing the survey)
 
Q5 Your postal address (person completing the survey)
 
Q6 Your email address (person completing the survey)
 
Q7 Your relationship to the person with autism whose needs are being surveyed
 
Person with autism myself
Parent of person with autism
Sibling of person with autism
Guardian/caregiver/case manager of person with autism
Other
 
Q8 Have you a diagnosis of autism spectrum disorders in some form?
 
Yes
No
 
Q9 If the answer to Question 8 is YES: how old were you when diagnosed with autism?
 
Under 12 months
12 and under 24 months
24 months and under 36 months
36 and under 48 months
48 and under 60 months
5 and under 6 years
6 and under 10 years
10 and under 15 years
15 and under 20 years
20 and under 30 years
30 and under 40 years
40 and under 50 years
50 years or older
Don't know
 
Q10 If the answer to Question 8 is YES: please quote the keywords of your diagnosis
 
Q11 If the answer to Question 8 is NO: Are you currently trying to get a diagnosis or asessment?
 
Yes
No
 
Q12 Do any other members of your family have any form of autism spectrum disorders?
 
Yes
No
 
Q13 If the answer to Question 12 is YES: please explain which of your relatives are affected
 
Q14 What is your cognitive or functioning level, as measured or generally assumed by others?
 
Severely-profoundly mentally handicapped
Mildly/moderately mentally handicapped
Average
Above average
Uneven, all over the place
 
Q15 What level was reached in your formal education?
 
Preschool
Kindergarten-Grade 4
Grade 4-8
Grade 9-12
Undergraduate degree or college diploma
Graduate degree
Postgraduate degree
Special education or TMR class
 
Q16 How do you communicate in everyday life?
 
Speaking with no problems in being understood
Speaking with some impairment
Sign language
Facilitated Communicating
Gestures
Picture Exchange Communication system
Acting out when upset or others do not understand
No communication at all
Some other method
 
Q17 How do you communicate in important decisions affecting your life?
 
Speaking with no problems in being understood
Speaking with some impairment
Sign language
Facilitated Communicating
Gestures
Picture Exchange Communication system
Acting out when upset or others do not understand
No communication at all
Some other method
 
Q18 What are your greatest strengths and keenest interests?
 
Q19 What are your greatest challenges?
 
Q20 Where do you live?
 
In the province of Ontario, Canada
In Canada, outside Ontario
In the United States
Outside Canada and the United States
 
Q21 If your answer to Question 20 was Ontario: please name your municipality and county/region/district
 
Q22 If your answer to Question 20 was Canada outside Ontario: please name your province
 
Q23 If your answer to Question 20 was the United States, please name your state
 
Q24 If your answer to Question 20 was Outside Canada and the United States: please name your country
 
Q25 In what kind of community do you live?
 
Metropolitan area of at least half a million people
Middle-sized urban area (75,000 to 500,000 people)
Commuter belt around metropolitan area
Town or smaller city (under 75,000 people)
Rural farming, mining, fishing or forestry area
 
Q26 What is your living situation?
 
With parents in family home
With sibling in family home
Foster home
Group home (with not more than 5 others) operated by non-profit agency
Group home (with not more than 5 others) by for-profit operator
Schedule I or II facility (with at least 50 other residents)
Nursing home
Supported Independent apartment alone
Apartment/townhouse shared with another disabled person
In own home with support
In own home independently
In some other living situation
 
Q27 Is your present living situation considered appropriate now?
 
Yes
No
 
Q28 If your answer to Question 27 is NO: please explain the main factor or problem
 
Q29 Are you in full-time paid employment?
 
Yes
No
 
Q30 If your answer to Question 29 is YES: in what vocational category do you work?
 
Professional/clinical
Technical/skilled trades
General employment
 
Q31 If your answer to Question 29 is NO, how do you spend your time on weekdays? Please estimate the number of hours you spend in each of the following activities in an average week.
School-based programs.
None
 
1-10 hrs
 
11-20 hrs
 
21-30 hrs
 
31+ hrs
  College or university        
  Adult day programs        
  Sheltered workshop        
  Vocational training        
  Working for pay independently        
  Working for pay with support        
  Volunteering in community        
  Individualized program with support        
 
Q32 If you do not spend time in any of the options listed in Question 31, how do you occupy your time?
 
Q33 Is your present daytime pattern of life appropriate?
 
Yes
No
 
Q34 If your answer to Question 33 is NO: please explain the main factors or problems
 
Q35 Do you receive a disability pension (ODSP in Ontario)
 
Yes
No
 
Q36 Do you get Special Services at Home funding (in Ontario)
 
Yes
No
 
Q37 What other formal services or supports do you actually receive at least once a month?
 
Case management or equivalent
Adult Protective Service staff
Facilitator of Support Network
Consultation with Behaviour Management specialist
Consultation with Occupational Therapist
Consultation with Speech Language Specialist
Appointment with Physician
Appointment with Psychiatrist
Appointment with Psychologist
Respite
 
Q38 Which of the following treatment or therapies have you experienced and to what extent were they helpful?
Applied Behavior Analysis
not tried
 
Tried briefly, not helpful
 
Tried, rather helpful
 
Tried, very helpful
  Auditory Integration Training      
  Aversive Conditioning      
  Behavior modification      
  Cognitive-Behavior Therapy      
  Counseling/psychotherapy      
  Dietary intervention      
  Drug/pharmacological treatment      
  Exercise Therapy      
  Facilitated Communication      
  Functional Communication Training      
  Music Therapy      
  Relaxation Therapy      
  Sacro-cranial Therapy      
  Sensory Integration techniques      
  Sign language      
  Social learning      
  Social stories      
  Visual imaging/PECS      
  Vitamins, enzymes or hormones      
 
Q39 If you wish, comment further on your experience of any of the above.
 
Q40 If you have found some other form of treatment or therapy effective for you, please explain.
 
Q41 Please assess how good your life is for each of the following aspects. We acknowledge the Quality of Life Research Unit, Centre for Health Promotion, University of Toronto for this set of categories. There are groups of three questions on: my body and health; my thoughts and feelings; my beliefs and values; where I live; the people around me; my connectedness to the resources in my community; my practical daily activities; what I do for fun and enjoyment; and what I do to change, grow and adapt.
Looking after physical health
Very poor
 
Barely adequate
 
Pretty good most of the time but some things need to be improved
 
Very good just about all the time
  Eating a balanced diet      
  Hygiene and body care      
  Self-control      
  Self-concept      
  Freedom from anxiety      
  Understanding right and wrong      
  Attaching meaning to life      
  Celebrating life      
  Place of residence      
  Space for privacy      
  Living in a neighbourhood      
  Having a spouse or special person      
  Family      
  Friends      
  Access to meaningful work      
  Access to community places      
  Access to education      
  Work, school or program      
  Work around the home      
  Looking after people/pets      
  Visiting and socializing      
  Casual leisure activities      
  Hobbies      
  Learning about new things      
  Attaining new independent living skills      
  Adjusting to changes in life      
 
Q42 Overall, how well do you like your life as it is now?
 
Not all; my life is very poor
My life is only barelyadequate; there are many things to be changed
My life is pretty good most of the time, but a few things need to be improved
My life is very good; I want everything in my life to continue
 
Q43 Do you have a personal support network?
 
Yes
No
Does not apply to me
I want to know more
 
Q44 Have you taken part in a formal process of planning for your future? Examples of formal planning tools are MAPS (Making Action Plans) and PATH (Planning Alternative Tomorrows with Hope)
 
Yes
No
Does not apply to me
I want to know more
 
Q45 Do you have opportunities (with support, if you need it) to make and comment on important decisions affecting your life?
 
Yes
No
Does not apply to me
I want to know more
 
Q46 Do you think Individualized Funding would make your life better?
 
Yes
No
Does not apply to me
I want to know more
 
Q47 Do you need a new type of living situation within the next five years?
 
Yes
No
 
Q48 If the answer to Question 47 is YES: which of the following situations do you most need?
 
With parents in family home
With sibling in family home
Foster home
Group home (with not more than 5 others) operated by non-profit agency
Group home (with not more than 5 others) by for-profit operator
Schedule I or II facility (with at least 50 other residents)
Nursing home
Supported Independent apartment alone
Apartment/townhouse shared with another disabled person
In own home with support
In own home independently
In some other living situation
  If some other, please specify:
 
Q49 In the next five years, do you expect to need changes in how you spend your time on weekdays?
 
Yes
No
 
Q50 If the answer to Question 49 is Yes: How much time do you need (in hours each week on average) of each of the following activities? Please check the appropriate boxes.
School-based programs
None
 
Up to 10 hrs per week
 
11-20 hrs per week
 
21-30 hrs per week
 
31 + hrs per week
  College or university        
  Adult life skills day programs        
  Sheltered workshop        
  Vocational training        
  Working for pay independently        
  Working for pay with support        
  Volunteering in community        
  Individualized program with support        
  Other, please specify
 
Q51 What other services or supports do you consider you need in the next five years?
 
Assessment of functional skills
Help with communication skills
Help with social skills
Literacy and further education
Job training
Coping skills for stress and anxiety
Help with gastronintestinal problems/diet
Help with sensory integration
Sex counselling
Monitoring of drugs
Case management to co-ordinate life
Legal services
Respite care
Leisure activities
Financial counselling
 
Q52 How important is to to you to keep informed about autism spectrum disorders?
 
Not at all
Slightly important
Moderately important
Very important
 
Q53 How important is to to you to keep in touch with other people who are autistic or have family members with autism?
 
Not at all
Slightly important
Moderately important
Very important
 
Q54 Would you like us to send you a summary of the general findings of this survey?
 
Yes
No
 
Q55 If you live in the Region of Waterloo or in Guelph-Wellington County in Ontario, are you interested in the ASPIRE project that could help with information and resources for your situation?
 
Yes
No
 
Q56 If you live outside the Waterloo-Wellington region of Ontario, would you like to know of any possible project that might help with information and resources for your situation?
 
Yes
No
 
Q57 Do you now receive case management and co-ordination services? Case management and service co-ordination assist individuals and families with disabilities (such as autism/pdd) in obtaining necessary clinical, educational, financial, medical, residential and social services. Trained service co-ordinators actively seek out services and entitlements and are advocates on behalf of the person and her/his family. The service co-ordinator meets with each family at least once a month to assess current services and supports, discuss and develop plans for new services and supports, and then try to procure them.
 
Yes
No
 
Q58 Would you, as an adult on the autism spectrum and/or a supporting family, want and need case management and co-ordination services?
 
Yes
No
   

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