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Adults with ASD: Legal Representative

Date Published: 
August 24, 2009

This version of the Adult with ASD Questionnaire is the first of a series of IAN Research online surveys for adults with autism spectrum disorders (ASD) and their guardians or other legally authorized representatives (LAR). 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 regarding adults with ASD. (Note that some of the following questions may be skipped if responses to previous questions indicate they don't apply.)

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.

NOTE TO THE LAR. We encourage you to involve the adult with ASD under your guardianship in the completion of this questionnaire to whatever degree possible. Please note, however, that the first section of the questionnaire includes questions about level of functioning. If you would not like to address these with the adult present, you may prefer to have him or her join you at the beginning of the second section, which addresses strengths and abilities of people on the autism spectrum.

Autism Spectrum Diagnosis

In this section, we will ask questions about the adult's autism spectrum diagnosis (autism, Asperger's syndrome, etc.) and level of functioning.

If you wish to include the adult with ASD in answering the questionnaire, but would feel uncomfortable answering "level of functioning" questions in front of him or her, have the adult join you when this section is complete and the next section, which is on strengths and abilities, begins.

1. What was the FIRST autism spectrum disorder (ASD) diagnosis the adult ever received from a professional? (If it has not changed, this is the ASD diagnosis he or she has 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)
  • The adult never has been diagnosed with an autism spectrum disorder by a professional.

2. Approximately how old (in years) was the adult when he or she received this FIRST ASD diagnosis?

3. Please provide the date when the adult 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 the adult 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 the adult's CURRENT ASD diagnosis different than the first?

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

6. What is the adult's 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)
  • He or she no longer has an ASD diagnosis (according to a professional).

7. Approximately how old (in years) was the adult when he or she received this CURRENT ASD diagnosis?

8. Please provide the date when the adult 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 the adult 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

10. Does the adult use spoken language?

  • No
  • Yes

11. Describe the adult's use of spoken language.

  • Language use is completely typical.
  • There are difficulties mainly with "pragmatic" or social language.
  • There is difficulty expressing needs using spoken language.
  • Other

12. Does the adult use any of the following to help him or her communicate? Check yes or no for each response.

  • Sign language
  • High-tech assistive technology (such as a voice-output communication device, keyboard, etc.)
  • Low-tech assistive technology (such as Picture Exchange Communication system, Flip-and-Talk, etc.)
  • Communication by gesture or behavior
  • Other

13. Is the adult able to take a shower or bath without assistance?

  • No
  • Yes

14. Is the adult able to go to the toilet, use the toilet, and return without assistance?

  • No
  • Yes

15. Is the adult able to dress him- or herself without assistance (except for tying shoes)?

  • No
  • Yes

16. Is the adult able to tie his or her shoes?

  • No
  • Yes

17. Is the adult able to feed him- or herself without assistance?

  • No
  • Yes

18. Is the adult able to shop for him- or herself?

  • Can shop for groceries, clothes, and other necessities independently.
  • Can shop independently for small purchases, but needs assistance with more major purchases.
  • Needs to be accompanied on all shopping trips.
  • Is unable to shop.

19. Is the adult able to prepare food for him- or herself?

  • Can plan and prepare meals without assistance.
  • Can prepare meals without assistance, but needs help with planning.
  • Needs assistance to prepare meals.
  • Is unable to participate in meal preparation.

20. Is the adult able to do housekeeping chores?

  • Can maintain house alone or with very little assistance.
  • Can't do major cleaning, but can do daily tasks like dish washing and bed making.
  • Can participate, but needs assistance with all housekeeping tasks.
  • Is unable to participate in housekeeping tasks.

21. Is the adult able to do laundry for him- or herself?

  • Can do laundry from start to finish without assistance.
  • Can do laundry with some assistance.
  • Is unable to do laundry.

22. Is the adult able to manage his or her own finances?

  • Can independently manage finance-related tasks like going to the bank, writing checks, or paying bills.
  • Can manage finance-related tasks with assistance.
  • Is unable to participate in finance-related tasks.

23. Is the adult able to use the telephone independently?

  • Can both make and take calls without assistance.
  • Can take calls, but needs assistance to make calls.
  • Is unable to use the telephone without assistance.
  • Is unable to use the telephone at all.

24. Does the adult currently harm him- or herself?

  • Often
  • Sometimes
  • Rarely
  • Never

25. Is the adult currently aggressive to others?

  • Often
  • Sometimes
  • Rarely
  • Never

26. Is the adult currently destructive to property (at home or elsewhere)?

  • Often
  • Sometimes
  • Rarely
  • Never

27. Left unsupervised, does the adult ever wander from home such that you worry about his or her safety?

  • Often
  • Sometimes
  • Rarely
  • Never

28. Does the adult show affection to close family members?

  • Often
  • Sometimes
  • Rarely
  • Never

29. Does the adult show interest in social interaction with people outside the family?

  • Often
  • Sometimes
  • Rarely
  • Never

30. A person with ASD may have varied levels of ability across many areas of functioning. Still, it is helpful for researchers to have an overall assessment of functioning level. If you are willing, please indicate your average impression of the adult's overall level of intellectual functioning by choosing from the list below to fill in the blank.

The adult functions intellectually at the level of a typical__________________.

  • Infant (younger than 12 months old)
  • Toddler (1-3 years old)
  • Pre-school or kindergarten child (4-5 years old)
  • Early elementary school child (6-8 years old)
  • Late elementary school child (9-11 years old)
  • Middle school child (12-14 years old)
  • High school child (15-18 years old)
  • Young adult (19-25 years old)
  • Mature adult (26 years and older)

31. If you are willing, please indicate your average impression of the adult's overall level of social functioning by choosing from the list below to fill in the blank.

The adult functions socially at the level of a typical ___________.

  • Infant (younger than 12 months old)
  • Toddler (1-3 years old)
  • Pre-school or kindergarten child (4-5 years old)
  • Early elementary school child (6-8 years old)
  • Late elementary school child (9-11 years old)
  • Middle school child (12-14 years old)
  • High school child (15-18 years old)
  • Young adult (19-25 years old)
  • Mature adult (26 years and older)

Strengths, Abilities, and Special Interests

32. What particular abilities or strengths does the adult have because he or she is a person on the autism spectrum? Check all that apply or "none" 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

33. Does the adult 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 interest or topic.")

  • No
  • Yes

34. What type of special interest or topic does the adult currently have? Check all that apply if he or she has more than one. Please use the option "I would like to provide additional information with my response" if you would like to tell us more about the adult's 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

35. How does the adult's special topic affect his or her life? Check all that apply or "none of the above" if none apply.

  • His or her job or career involves the special topic.
  • His or her studies in school or college are (or were) related to the special topic.
  • He or she has relationships based on the special topic. He or she may make friends or join groups focused on the same interest.
  • He or she enjoys activities or hobbies relating to the special topic.
  • His or her special topic sometimes gets in the way of success at work, school, or in relationships.
  • The special topic has gotten him or her 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.

36. What is the highest level of education the adult has 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

37. Is the adult currently attending school, such as high school, vocational or trade school, or college?

  • No
  • Yes

38. In what type of housing does the adult 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

39. Does the adult live with any other people?

  • No
  • Yes

40. With whom does the adult live? Check all that apply.

  • With a spouse or other life partner
  • With his or her own children
  • With housemates or friends that he or she got to choose
  • With housemates or friends that he or she didn't get to choose
  • With 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

41. Does the adult currently have paid employment?

  • No
  • Yes

42. On average, how many hours per week does the adult work?

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

43. Would the adult like to work more hours than he or she is currently able to get?

  • No
  • Yes

44. What is the adult's current work situation? Check yes or no for each response.

  • Regular employment (with no help or support)
  • Supported employment (he or she may have a job coach or other special help at work)
  • Sheltered workshop
  • Enclave employment (he or she 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

45. You have told us the adult is not working. Please help us understand his or her situation. Check yes or no for each response.

  • Unemployed -- wants to work but can't find work
  • Has tried to work but faced discrimination or other difficulties with employers because of ASD
  • Does 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

46. How much does the adult rely on his or her family for financial support?

  • The family does not provide any financial support for him or her.
  • The family provides less than half of his or her financial support, but does help financially sometimes.
  • The family provides about half of his or her financial support.
  • The family provides more than half (but not all) of his or her financial support.
  • The family provides all of his or her financial support.

47. Does the adult receive any federal or state benefits, such as Social Security Disability Insurance (SSDI) or Medicaid?

  • Yes
  • No
  • Not sure

48. What federal or state benefits does the adult 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

49. Does the adult 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)

50. Has the adult 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

51. What treatments or interventions is the adult currently using to help with ASD or other conditions he or she 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

52. 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.)

53. 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.)

54. 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.)

55. 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.)

56. 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.)

57. 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.)

58. 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.)

59. 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.)

60. 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.)

61. 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.)

62. 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.)

63. 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.)

64. 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.)

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

66. 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

67. How much, if any, did the adult participate in the completion of this survey?

  • He or she helped with none of the the questions.
  • He or she helped with less than half of the questions.
  • He or she helped with about half of the questions.
  • He or she helped with more than half (but not all) of the questions.
  • He or she helped with all of the questions.

68. Has the adult ever participated in a RESEARCH STUDY about autism spectrum disorders (prior to this one)?

  • No
  • Yes

69. Has the adult ever participated in a RESEARCH STUDY about autism spectrum disorders as an adult (age 18 and older)?

  • No
  • Yes

70. Has the adult ever been in a RESEARCH STUDY about the GENETICS of autism spectrum disorders?

  • No
  • Yes

71. Has the adult ever been in a RESEARCH STUDY about DRUGS/MEDICATIONS for treating autism spectrum disorders?

  • No
  • Yes

72. What did you think about the length of this form?

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

73. 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
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