Adult with ASD Questionnaire

Date First Published: August 24, 2009

Background

The Adult with ASD Questionnaire is the first of a series of IAN Research online surveys for adults with autism spectrum disorders (ASD). Questions center on ASD diagnosis; strengths, abilities, and special interests; daily living, such as employment and housing arrangements; and past history of participation in ASD-related research. In addition, the questionnaire solicits suggestions about potential topics for IAN's next survey for adults with ASD.

This rich store of data -- after all identifying information is stripped away -- is then shared with autism researchers seeking answers about ASD and how it changes over the life span.

Please note: Some questions may be skipped if responses to previous questions indicate they don't apply.

Autism Spectrum Diagnosis

1. What was the FIRST autism spectrum disorder (ASD) diagnosis you ever received from a professional? (If it has not changed, this is the ASD diagnosis you have now.)

• Autism or Autistic disorder
• Asperger's Syndrome
• Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)
• Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
• Autism Spectrum Disorder (ASD) (choose only if none of the above apply)
• I never have been diagnosed with an autism spectrum disorder by a professional.

2. Approximately how old (in years) were you when you received this FIRST ASD diagnosis?

3. Please provide the date when you received this FIRST ASD diagnosis. Please indicate the date as accurately as you can. If you do not know the day or month, choose "Don't Know" from the drop down menus for day and month. If you don't know the date at all, click on "I can't answer because...."

4. Who gave you this FIRST ASD diagnosis?

• Pediatrician
• Primary care doctor (other than pediatrician)
• Developmental pediatrician
• Psychiatrist
• Clinical Psychologist
• Neurologist
• Team of health professionals
• Team of professionals in a school system
• Speech and Language Pathologist
• Other

5. Is your CURRENT ASD diagnosis different than your first?

• Yes, the CURRENT diagnosis is different.
• No, the CURRENT diagnosis is the same.

6. What is your CURRENT ASD diagnosis?

• Autism or Autistic disorder
• Asperger's Syndrome
• Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)
• Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
• Autism Spectrum Disorder (ASD) (choose only if none of the above apply)
• I no longer have an ASD diagnosis (according to a professional).

7. Approximately how old (in years) were you when you received this CURRENT ASD diagnosis?

8. Please provide the date when you received this CURRENT ASD diagnosis. Please indicate the date as accurately as you can. If you do not know the day or month, choose "Don't Know" from the drop-down menus for day and month. If you don't know the date at all, click on "I can't answer because...."

9. Who gave you this CURRENT ASD diagnosis?

• Pediatrician
• Primary care doctor (other than pediatrician)
• Developmental pediatrician
• Psychiatrist
• Clinical Psychologist
• Neurologist
• Team of health professionals
• Team of professionals in a school system
• Speech and Language Pathologist
• Other

Strengths, Abilities, and Special Interests

10. What particular abilities or strengths do you have because you are a person on the autism spectrum? Check all that apply or "none of the above" if none apply.

• An ability to think in unusual, creative ways
• An ability to focus intensely on certain topics
• Honesty
• A sense of justice
• A different way of experiencing the world
• Ability in mathematics, science, or computers
• Ability in art or music
• A very good memory for certain topics
• An ability to focus on small details
• An incredible imagination
• Kindness
• Other
• None of the above

11. Do you have a special interest or topic? (Often individuals with an ASD have an unusually intense area of interest or focus. This is what we mean by "special topic.")

• No
• Yes

12. What type of special interest or topic do you have? Check all that apply if you have more than one. Please use the "I would like to provide additional information with my response" if you would like to tell us more about your special topic.

• Modes of transportation (such as trains, automobiles, aircraft)
• History
• Science (such as astronomy, geology)
• Science fiction or fantasy (in books, films, video games)
• Computers
• Mathematics or numbers
• Animals (such as dogs, fish, horses)
• Movies
• Cartoons or anime
• Maps, calendars, or dates
• Timetables or schedules
• Dinosaurs, monsters, or fictional creatures
• Music
• Art
• Sports
• Sewing or crafts
• Other

13. How does your special topic affect your life? Check all that apply or "none of the above" if none apply.

• My job or career involves my special topic.
• My studies in school or college are (or were) related to my special topic.
• I have relationships based on my special topic. I make friends or join groups focused on the same interest.
• I enjoy activities and hobbies relating to my special topic.
• My special topic sometimes gets in the way of success at work, school, or in relationships.
• The special topic has gotten me in trouble. (For example, it may have led to addictive behavior or breaking the law.)
• Other
• None of the above

Questions About Education, Work, Living Situation, Financial Support, etc.

14. What is the highest level of education you have completed?

• Less than high school
• High school certificate of completion (special education alternative to diploma)
• High school graduate or equivalent (GED)
• Trade or vocational school (certificate or license but no degree)
• Some college but no degree
• Associate's degree in vocational or technical program
• Associate's degree in academic program
• Bachelor's degree
• Master's degree
• Ph.D. or Professional degree
• Other

15. Are you currently attending school, such as high school, vocational or trade school, or college?

• No
• Yes

16. In what type of housing do you currently live?

• An apartment
• A townhouse, condo, or duplex
• A single-family home (a house not attached to other houses)
• A college or other school dormitory
• An intermediate-care facility, nursing home, or other institutional setting
• Other

17. Do you live with any other people?

• No
• Yes

18. With whom do you live? Check all that apply.

• With a spouse or other life partner
• With my children
• With housemates or friends that I got to choose
• With housemates I didn't get to choose
• With my parents
• With one or more siblings
• With a relative other than parents, siblings, or children (such as a grandparent, aunt, or uncle)
• Paid caregivers
• Other

19. Do you currently have paid employment?

• No
• Yes

20. On average, how many hours per week do you work?

• 1 - 9 hours
• 10 - 19 hours
• 20 - 29 hours
• 30 - 39 hours
• 40 or more hours

21. Would you like to work more hours than you currently are able to get?

• No
• Yes

22. What is your current work situation? Check yes or no for each response.

• Regular employment (with no help or support)
• Supported employment (you may have a job coach or other special help at work)
• Sheltered workshop
• Enclave employment (you may work in a business with a group of other people with special needs, all under supervision of an agency serving people with disabilities)
• Day program that includes work or vocational activities
• Internship or work study program
• Other

23. You have told us you are not working. Please help us understand your situation. Check yes or no for each response.

• Unemployed -- want to work but can't find work
• Have tried to work but faced discrimination or other difficulties with employers because of ASD
• Do not wish to work at present (may be in school, a stay-at-home parent, etc.)
• Not able to work because it would interfere with federal or state benefits (such as disability payments)
• Not able to work because the workplace would be too challenging (because of ASD or other health or mental health issues)
• Other

24. How much, if any, do you rely on your extended family (such as parents and siblings) for financial support?

• My family does not provide any financial support for me at all.
• My family provides less than half of my financial support. They help me financially sometimes.
• My family provides about half of my financial support.
• My family provides more than half (but not all) of my financial support.
• My family provides all of my financial support.

25. Do you currently receive any federal or state benefits, such as Social Security Disability Insurance (SSDI) or Medicaid?

• Yes
• No
• Not sure

26. What federal or state benefits do you currently receive? Check all that apply or "none" if none apply.

• Social Security Disability Insurance (SSDI)
• Supplemental Security Income (SSI)
• State disability programs that use only state and/or local funds
• Medicaid (for health insurance)
• Medicare
• Medicaid HCBS (Home and Community Based Services) waiver or Developmental Disability waiver
• Employment assistance or job support (sometimes called "Vocational Rehabilitation" or "VR")
• Section 8 Housing
• Transportation services for people with disabilities
• Other
• None

27. Do you suffer from any of the following? Check yes or no for each response.

• Gastrointestinal issues (such as chronic diarrhea, constipation, nausea, vomiting, acid reflux, etc.)
• Allergies
• Sleep issues (such as problems going to sleep or staying asleep)
• Skin conditions (such as psoriasis or eczema)

28. Have you been diagnosed with any of the following conditions by a professional? Check yes or no for each response.

• A seizure disorder or epilepsy
• Asthma
• Diabetes
• Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit Disorder (ADD)
• Oppositional Defiant Disorder (ODD)
• Obsessive Compulsive Disorder (OCD)
• Anxiety (such as social phobia, generalized anxiety disorder, panic disorder, or some other kind of anxiety)
• Depression (such as major depressive disorder, seasonal affective disorder, postpartum depression, or some other kind of depression)
• Bipolar Disorder
• Schizophrenia
• Other

29. What treatments or interventions are you currently using to help with ASD or other conditions you might have, such as attention deficit hyperactivity disorder (ADHD) or anxiety? Check all that apply or "none" if none apply.

• Medication
• Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc.)
• Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)
• Group Therapy
• Marital or Family Therapy
• Support Group, in person
• Support Group, online
• Spiritual practice (such as prayer or meditation)
• Speaking with a pastor, rabbi, etc.
• Self-help books
• Applied Behavior Analysis (ABA)
• Physical Therapy
• Occupational Therapy
• Speech and Language Therapy
• Social Skills Training or a Social Skills Group
• Life-Skills or Self-Care Training
• Other
• None

What Do We Need to Learn About Adults with ASD?

We are developing a series of surveys for adults with ASD so that people will better understand the challenges faced by adults on the autism spectrum. To help us decide which topics to study first, we are asking you to rate the importance of 15 general topics that are common to daily life.

• Extremely high priority
• High priority
• Medium priority
• Low priority
• Not a priority

30. Understanding and Accepting Adults with ASD (This research will answer questions about how to teach other people, like educators and employers, how adults with ASD experience the world, how they feel, why they behave the way they do, and what they need.)

31. Employment and Adults with ASD (This research will answer questions about whether adults with ASD are succeeding in the workplace, what kind of help they need at work, and whether they have faced discrimination at work.)

32. Education and Adults with ASD (This research will answer questions about whether adults with ASD are succeeding at college or in other educational programs, what kind of help they need, and whether or not they are getting the help they need.)

33. Federal and State Assistance for Adults with ASD (This research will answer questions about whether adults with ASD need and are receiving government help such as supplemental security income [SSI], social security disability insurance [SSDI], or Medicaid.)

34. Financial Issues and Adults with ASD (This research will answer questions about how adults with ASD pay for food, housing, and health care, and if they can afford what they need.)

35. Living Situation and Adults with ASD (This research will answer questions about where adults with ASD are living, who they are living with, and if they are happy with their living situation.)

36. Transportation and Adults with ASD (This research will answer questions about whether adults with ASD have a way to travel to school, work, or other activities, and if problems with transportation are preventing them from living the life they want.)

37. Health Conditions and Adults with ASD (This research will answer questions about how many adults with ASD are coping with medical conditions or mental health issues.)

38. Health Care Access and Adults with ASD (This research will answer questions about how many adults with ASD have health insurance and can get the medical care, dental care, or mental health care they need.)

39. Current Treatments and Adults with ASD (This research will answer questions about what treatments adults with ASD are using to help them with any medical or mental health issues, and what treatments are the most helpful.)

40. Daily Life and Adults with ASD (This research will answer questions about how adults with ASD spend their time, and whether they are satisfied with their lives.)

41. Friendship and Adults with ASD (This research will answer questions about adults with ASD and their social relationships, including whether they are satisfied with their ability to make friends and with the friendships they have.)

42. Romantic Relationships and Adults with ASD (This research will answer questions about adults with ASD and their romantic relationships, including whether they are satisfied with their ability to find a romantic partner, and with the romantic relationships they have.)

43. Sexuality and Sexual Health and Adults with ASD (This research will answer questions about adults with ASDs, their knowledge about sex, their sexual experiences, and their sexual health and safety.)

44. The Criminal Justice System and Adults with ASD (This research will answer questions about what happens when adults with ASD become involved with the criminal justice system whether they have been the victims of a crime or accused of committing a crime.)

Participation in ASD Research

45. Have you ever participated in a RESEARCH STUDY about autism spectrum disorders (prior to this one)?

• No
• Yes

46. Have you participated in a RESEARCH STUDY about autism spectrum disorders after you became an adult (18 years of age and older) prior to this one?

• No
• Yes

47. Have you ever participated in a RESEARCH STUDY about the GENETICS of autism spectrum disorders?

• No
• Yes

48. Have you ever participated in a RESEARCH STUDY about DRUGS/MEDICATIONS for treating autism spectrum disorders?

• No
• Yes

49. What did you think about the length of this questionnaire?

• It was too short and did not ask all of the questions I would have expected.
• It was too long.
• It was just right.

50. In what ways did you hear about IAN prior to deciding to join? Check all that apply.

• Invited by family member already in IAN
• Received a "mass" e-mail
• Television
• Radio
• Print media (including newspapers, magazines, etc.)
• Internet search
• IAN Community website
• Website/online (not IAN Community)
• IAN Research ad or link from other website (not IAN Community)
• Autism fundraising event, such as walk or bike ride
• Conference
• Health care provider
• School
• "Word of mouth" from friend or family
• Participated in IAN as a child, but now adult
• Other