|
subjectkey |
GUID |
|
Required |
|
The NDAR Global Unique Identifier (GUID) for research subject |
NDAR*
|
|
|
|
src_subject_id |
String |
20
|
Required |
|
Subject ID how it's defined in lab/project |
|
|
|
|
interview_date |
Date |
|
Required |
|
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
|
|
interview_age |
Integer |
|
Required |
|
Age in months at the time of the interview/test/sampling/imaging. |
0::1440
|
Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
|
|
|
sex |
String |
20
|
Required |
|
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender |
Query
|
earlydev_acon |
Integer |
|
Recommended |
|
Age (in months) when parents first noticed that something is not quite right in language, relationships or behavior(in months) |
0 :: 400;991;992;996;997;998;999
|
991 = Parents not concerned although child was referred by professional; 992 = Parents have been worried since birth (e.g., if baby premature or very ill at birth); 996 = Can't recall but before 3 years; 997 = Can't recall but 3 years or later; 998=N/A; 999=N/K or not asked
|
|
|
earlydev_fsymc |
String |
1,020
|
Recommended |
|
First symptoms to arouse parental concern (specify) |
|
|
|
Query
|
concern24m |
Integer |
|
Recommended |
|
Were first concern clearly evident by 24 months? |
0;1
|
0=No; 1=Yes
|
|
Query
|
first_child |
Integer |
|
Recommended |
|
Is child your first child? |
0;1
|
0=No; 1=Yes
|
|
Query
|
pregia_b |
Integer |
|
Recommended |
|
Have you been child primary caretaker since birth? |
0;1
|
0=No; 1=Yes
|
|
|
pregia_c |
String |
100
|
Conditional |
pregia_b === '0' |
Who else has been a primary caretaker? |
|
|
|
|
pregia_d |
String |
500
|
Conditional |
pregia_b === '0' |
When was that person= the primary caretaker? |
|
|
|
|
mpq2 |
String |
500
|
Recommended |
|
Were there any other important things happening to you or your family right around this time? |
|
|
|
Query
|
fc2_1 |
Integer |
|
Conditional |
fc2_1 === 0 |
Were you the first person who was concerned that something didnt seem right with childs development? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
fc2_2 |
Integer |
|
Conditional |
fc2_1 === 0 |
Who was the first person who said they were concerned? |
1::8; 99; 77
|
99=Don't know; 77=Refused; 1=mother; 2= father; 3= family member/relative; 4=a doctor or other healthcare provider; 5=teacher; 6=the school counselor or nurse; 7=a family friend; 8= other
|
|
|
fc2_2o |
String |
500
|
Conditional |
fc2_2 == '8' |
Specify other |
|
|
|
|
fc3 |
String |
25
|
Recommended |
|
At the time you were first concerned, did you share your concerns with any of the following? |
|
99=Don't know; 77=Refused; 1=spouse or partner; 2=family member; 3= friend; 4= child care provider or babysitter; 5=teacher or school staff; 6=clergy or church staff; 7=pediatrician or health care prvider; 9=other
|
|
|
fc3o |
String |
255
|
Recommended |
|
Specify other people you shared concern with |
|
|
|
Query
|
fc3_1 |
Integer |
|
Recommended |
|
When you shared your concerns with these people, did you ever feel like people were not taking your concerns seriously? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=refused
|
|
Query
|
fc3_2 |
Integer |
|
Recommended |
|
When you shared your concerns with these people, did you ever feel like someone was trying to keep you from seeking help for child? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=refused
|
|
|
fc3_3 |
String |
25
|
Conditional |
fc3_1 == '1' || fc3_2 == '1' |
Who did not take your concerns seriously ortried to keep you from seeking help? |
|
99=Don't know; 77=Refused; 1=spouse or partner; 2=childs other parent; 3=family member; 4= friend; 5= child care provider or babysitter; 6=teacher or school staff; 7=clergy or church staff; 8=pediatrician or health care prvider; 9=other
|
|
|
fc3_3o |
String |
100
|
Conditional |
fc3 =='9' ||fc3_3 == '9' |
Specify other people who refused your concern |
|
|
|
Query
|
fc4 |
Integer |
|
Recommended |
|
Which one of these did you share your concerns with first? |
1::6;77;99
|
99=Don't know; 77=Refused; 1= child care provider; 2=teacher or school staff; 3=clergy or church staff; 4=pediatrician or health care prvider; 5=autism research center; 6=other
|
|
Query
|
fc4_1 |
Integer |
|
Recommended |
|
How old was child when you first shared your concerns with this person? In months |
|
|
|
Query
|
fc5_1 |
Integer |
|
Recommended |
|
Did that person: Conduct developmental tests? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc5_2 |
Integer |
|
Recommended |
|
Did that person: Make a referral to a specialist? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc5_3 |
Integer |
|
Recommended |
|
Did that person: Tell you nothing was wrong- that the behavior was normal, it was too early to tell, or that he/she might "grow out of it?" |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc5_4 |
Integer |
|
Recommended |
|
Did that person: Suggest that you discuss the concern with childs school? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc5_5 |
Integer |
|
Recommended |
|
Did that person do or say anything else? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
fc5_5o |
String |
300
|
Conditional |
fc5_5 == '1' |
Specify |
|
|
|
Query
|
fc6_1 |
Integer |
|
Recommended |
|
At this time of first concerns: Difficulty finding or keeping child care or babysitters |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc6_2 |
Integer |
|
Recommended |
|
At this time of first concerns: Difficulty going places you needed to go like the store |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc6_3 |
Integer |
|
Recommended |
|
At this time of first concerns: Difficulty finding or staying in preschool |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc6_4 |
Integer |
|
Recommended |
|
At this time of first concerns: School suspensions |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc6_5 |
Integer |
|
Recommended |
|
At this time of first concerns: Family Conflict / Martial Stress or Tension Among Adults Residing in the Household |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
fc6_6 |
Integer |
|
Recommended |
|
Other difficulties? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
fc6_6o |
String |
250
|
Conditional |
fc6_6 == '1' |
Specify other |
|
|
|
Query
|
fc7 |
Integer |
|
Recommended |
|
At this age was there a place or a doctor that child usually went to for well check-ups when he/she wasn't sick? |
1::3; 77; 99
|
99=Don't know; 77=Refused; 1=yes; 2= there was no place; 3= there was more than one place
|
|
Query
|
fc7_1 |
Integer |
|
Recommended |
|
At this age, did child have any kind of health care coverage, including health insurance, prepaid plans such as HMOs, or government plans such as Medicaid or S-CHIP? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
fc7_2 |
Integer |
|
Conditional |
fc7_1 == 1 |
What type of insurance was it? |
1::3; 77; 99
|
1=private or employer-based; 2=Public health insurance of some type; 3= other; 99=Don't know; 77=Refused
|
|
|
fc7_2o |
String |
150
|
Conditional |
fc7_2 == '3' |
Specify other |
|
|
|
Query
|
household_number_in_house |
Integer |
|
Recommended |
|
Number of people living in primary residence for subject (proband) |
|
|
|
Query
|
num_in_house_adults |
Integer |
|
Recommended |
|
Number of Individuals in Household Adults |
|
|
|
Query
|
num_in_house_kids |
Integer |
|
Recommended |
|
Number of Individuals in Household Children |
|
|
|
Query
|
d2_4 |
Integer |
|
Conditional |
num_in_house_kids >= 2 |
Did any of these other children have any disability, developmental delay, or other special needs? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
d2_4o |
String |
255
|
Conditional |
d2_4 == '1' |
Specify |
|
|
|
Query
|
briefscreen_respondent_age_yrs |
Integer |
|
Recommended |
|
age of Respondent in years |
|
|
|
Query
|
d4 |
Integer |
|
Recommended |
|
Were you married, widowed, divorced, separated, never married, or living with a partner? |
1::6; 99; 77
|
1=married; 2=widowed; 3=divorced; 4=separated; 5=never married; 6=living with a partner; 99=Don't know; 77=Refused
|
|
Query
|
d5 |
Integer |
|
Recommended |
|
Did you have a disability, special health care need, or other condition? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
d5o |
String |
150
|
Conditional |
d5 == '1' |
Specify type of disability, health care need or condition |
|
|
|
Query
|
d6 |
Integer |
|
Recommended |
|
How would you describe your general health at that time? Would you say it was |
1::5; 99; 77
|
1=Excellent; 2=very good; 3=good; 4= fair; 5=poor; 99=Don't know; 77=Refused; 9 = Missing
|
|
|
d7 |
String |
15
|
Recommended |
|
Thinking back to what you were doing at the time you were first concerned, which of these best describes what you were doing? Were you working then, not working, looking for work, retired, a stay-at-home parent, a student, or something else? |
|
1=working; 2=temporarily laid off, sick leave, maternity leave; 3=unemployed - looking for work; 4=unemployed - not looking for work; 5=retired; 6=disabled - permanently or temporarily; 7=full time stay at home parent; 8=student; 9=other; 99=Don't know; 77=Refused
|
|
|
d7o |
String |
100
|
Conditional |
d7 == '9' |
Specify other |
|
|
|
Query
|
d8 |
Integer |
|
Recommended |
|
At the age when you were having first concerns about child, what was the highest year or grade you had finished in school? |
1::11; 99; 77
|
99=Don't know; 77=Refused; 1=8th grade or less; 2=9th grade or above, not a high school graduate; 3= high school graduate or GED; 4= post high school education, no college degree; 5=vocational-technical = degree or certificate; 6=2-year college degree/associate degree; 7= 4-year college degree/BA, BS degree; 8= some BA/BS work, no degree; 9=master degree, e.g. MSW, MA, MFA, MPH, MBA; 10=PHD, MD, JD, LLB, or other professional graduate degree; 11=other
|
|
|
d8o |
String |
255
|
Conditional |
d8 == '11' |
Specify other |
|
|
|
Query
|
annual_fam_income |
String |
25
|
Recommended |
|
Family annual income |
1. Under $10 000;2. $10 000-$29 000;3. $30 000-$49 000;4. $50 000-$74 999;5. $75 000-$99 999;6. $100 000-$149 999;7. $150 000 and above; 8. Refused
|
|
|
Query
|
ad1 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Sometimes families see a professional who suspects the child might have autism but is not yet ready to give an official diagnosis of an autism spectrum disorder. Did this ever happen to you? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
ad1a |
Integer |
|
Conditional |
ad1 == 1 |
Who said this? |
1::5
|
1=Child care provider; 2=Teacher or school staff; 3=Clergy or staff at a place of worship; 4=Pediatrician or health care provider; 5=other
|
|
Query
|
ad6 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
I am going to read you a list of types of professionals and providers. What type of professional or provider gave this first autism diagnosis? |
1::10; 99; 77; 998
|
99=Don't know; 77=Refused; 1=Pediatrician; 2=Primary care doctor =; 3=Developmental pediatrician; 4=Psychiatrist; 5=Clinical psychologist; 6=Neurologist; 7=Team of health professionals; 8=Team of professionals from the early intervention program; 9=Team of professionals in a school system; 10=Other; 998=Not applicable/No official diagnosis
|
|
|
ad6o |
String |
200
|
Conditional |
ad6 == '10' |
Specify other |
|
|
|
Query
|
ad7 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Where did that professional or provider work? |
1::4; 99; 77; 998
|
99=Don't know; 77=Refused; 1=Public school system; 2=Health care system =; 3= Early intervention program; 4=Other; 998=Not applicable/No official diagnosis
|
|
Query
|
ad8 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Approximately how many times have you visited professionals about childs language, relating, behavior, or development (before diagnosis)? |
1::4; 99; 77; 998
|
99=Don't know; 77=Refused; 1=None; 2=1-2; 3=3-5; 4=6 or more; 998=Not applicable/No official diagnosis
|
|
Query
|
ad11_1 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of assessing/diagnosed your child?Listen carefully to your concerns? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad11_2 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of assessing/diagnosed your child? Spend enough time with you? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad11_3 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of assessing/diagnosed your child? Welcome your thoughts, concerns, and questions? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad11_4 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of assessing/diagnosed your child? Respect your choices and opinions? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad11_6 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of assessing/diagnosed your child? Help you figure out what your next steps would be to get help for child? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_1 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Wait time to get an appointment? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_2 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Cost of the evaluation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_3 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Availability of an evaluation in your area? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_4 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Poor quality of the evaluation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_5 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Scheduling conflicts? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_6 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Transportation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_7 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Insurance problems? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_8 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Finding time to attend the appointment? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_9 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Language Barriers? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad12_10 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 || diagnosed === 0 && ad == 1 |
Were any of the following a problem with getting your child assessed/diagnosed? Misunderstandings that may have resulted from cultural differences between you and the clinician |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
ad12_11 |
String |
100
|
Conditional |
diagnosed == '1' && ad2 == '1' || diagnosed === '0' && ad == '1' |
Other problems? |
|
|
|
Query
|
s1 |
Integer |
|
Recommended |
|
Has your child ever received special services for any developmental delays? |
0;1;-888;-999
|
0=No; 1=Yes; -888= Do not know; -999= Prefer not to answer
|
|
|
s2_1 |
String |
25
|
Conditional |
s1 == '1' |
After the age when you were having first concerns about your child, where did child first start getting special services to meet his/her needs |
|
99=Don't know; 77=Refused; 1=Home; 2=Childcare; 3=Regular School; 4=Special School; 5=Medical Clinic; 6=Other clinic; 7=Other setting; 998= Not Applicable/No Special Services
|
|
Query
|
s2_1a |
Integer |
|
Conditional |
s1 == 1 |
How old was he/she when these special services first began? Months |
|
|
|
|
s3 |
String |
25
|
Conditional |
s1 == '1' |
What kind of special services did he/she first receive? |
|
1=behaviour intervention or modification; 2=speech or language therapy; 3=occupational therapy; 4=special education; 5=early intervention; 6=special diet/herbal supplement/vitamin therapy; 7=other; 99= Don¿t know; 77=Refused; 998=Not Applicable/No Special Services
|
|
|
s3o |
String |
200
|
Conditional |
s3 == '7' |
Specify other |
|
|
|
|
s3_1 |
String |
25
|
Conditional |
s1 == '1' |
Where did child receive those services? |
|
1= public school system =; 2= health care system =; 3=early intervention program =; 4=other; 998= Not Applicable/No Special Services; 99=Don't know; 77=Refused
|
|
|
s3_1o |
String |
100
|
Conditional |
s3_1 == '4' |
Specify other |
|
|
|
Query
|
s4 |
Integer |
|
Conditional |
s1 == 1 |
Around this time when special services were beginning, were you ever told that child was not eligible for special services or were you denied services? |
0;1; 99; 77; 998
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 998= Not Applicable/No Special Services
|
|
Query
|
s5_1 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Wait time to get an appointment? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_2 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Cost of services? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_3 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Availability of services in your area? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_4 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Poor quality of the evaluation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_5 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Scheduling conflicts? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_6 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Transportation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_7 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Insurance problems? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_8 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Finding time to attend appointments? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_9 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Language Barriers? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s5_10 |
Integer |
|
Conditional |
s1 == 1 |
Were any of the following a problem in getting to or dealing with the first special services? Misunderstandings that may have resulted from cultural differences between you and the clinician |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
s5_11 |
String |
300
|
Conditional |
s1 == '1' |
Other problems? |
|
|
|
Query
|
ei1 |
Integer |
|
Conditional |
s1 === 0 || s3 != '5' && s3_1 != '3' |
At any time before child was 3 years old, did he/she receive services from a program called Early Intervention Services, sometimes called Birth-to-Three services? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
ei1a |
Integer |
|
Conditional |
ei1 === 0 |
Did you ever seek Early Intervention services? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
ei1b |
Integer |
|
Conditional |
ei1a == 1 |
Were you ever told that childwas not eligible for Early Intervention Services? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
ei2 |
Integer |
|
Conditional |
ei1 == 1 |
How old was CHILD when he/she first began receiving Early Intervention Services? Months |
|
|
|
Query
|
ei3_1 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Wait time to get an appointment? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_2 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Cost of services? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_3 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Availability of services in your area? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_4 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Poor quality of the evaluation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_5 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Scheduling conflicts? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_6 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Transportation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_7 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Insurance problems? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_8 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Finding time to attend appointments? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_9 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Language Barriers? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ei3_10 |
Integer |
|
Conditional |
ei1a == 1 || ei1 == 1 |
Were any of the following a problem in getting to or dealing with Early Intervention services? Misunderstandings that may have resulted from cultural differences between you and the clinician |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
ei3_11 |
String |
100
|
Conditional |
ei1a == '1' || ei1 == '1' |
Other problems? |
|
999=NA/NK/missing
|
|
Query
|
sped1 |
Integer |
|
Conditional |
s3 != 4 && interview_age >=36 |
Has child ever received services from a program called Special Education? |
0;1; 99; 77; 998
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 998=n/a
|
|
Query
|
sped1a |
Integer |
|
Conditional |
sped1 === 0 |
Did you ever seek Special Education services? |
0;1; 99; 77; 998
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 998=n/a
|
|
Query
|
sped1b |
Integer |
|
Conditional |
sped1a == 1 |
Were you ever told that child was not eligible for Special Education Services? |
0;1; 99; 77; 998
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 998=n/a
|
|
Query
|
sped2 |
Integer |
|
Conditional |
sped1 == 1 |
How old was child when he/she first began receiving school Special Educational Services? Months |
|
999=NA/NK/missing
|
|
Query
|
sped3_1 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Wait time to get an appointment? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_2 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Cost of services? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_3 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Availability of services in your area? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_4 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Poor quality of the evaluation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_5 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Scheduling conflicts? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_6 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Transportation? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_7 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Insurance problems? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_8 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Finding time to attend appointments? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_9 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Language Barriers? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
sped3_10 |
Integer |
|
Conditional |
sped1a == 1 || sped1 == 1 |
Were any of the following a problem in getting special education services? Misunderstandings that may have resulted from cultural differences between you and the clinician |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
|
sped3_11 |
String |
500
|
Conditional |
sped1a == '1' || sped1 == '1' |
Other problems? |
|
999=NA/NK/missing
|
|
Query
|
oc1 |
Integer |
|
Recommended |
|
Has your child received any other official diagnoses?/ Did child receive any other official diagnoses before you were told that he/she had autism? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
oc2 |
String |
25
|
Conditional |
oc1 == '1' |
What diagnoses were those? |
|
1 = developmental delays; 2= hearing loss; 3 = ADD/ADHD; 4= learning disability; 5=MR/ID; 6= seizures/seisure disorder/epilepsy; 7= behavioral disorder, conduct disorder, ODD; 8= anxiety disorder; 9=depression; 10=OCD; 11= other; 88= No other diagnosis; 77=refused; 99 = don't know
|
|
Query
|
gss1_1 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? WIC the Women, Infants, and Children nutrition program |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_2 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? Head Start, a federally funded preschool program |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_3 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? Food stamps |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_4 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? Medicaid health insurance |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_5 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? S-CHIP health insurance, also known as the State Childrens Health Insurance Program |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_6 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? Information and referral help from 2-1-1 or another phone helpline for information about your childs development, services, or autism |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
gss1_7 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did your child or family ever get any of the following kinds of help or services? Public housing or Section 8 rental assistance |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
od1 |
String |
25
|
Conditional |
diagnosed == '1' || diagnosed ==='0' && ad== '1' |
During this time period, what kinds of things were the most helpful to you in getting help for child? |
|
1= other parents/ parent group; 2= child care provider; 3= early intervention program providers; 4= preschool/ early childhood programproviders includes special education; 5= school staff (elementary level and above); 6= professional service provider, therapist; 7= doctor or health care provider; 8= advocacy organization; 9= family members; 10= online, web; 11= newsletters, magazines; 12= trainings, workshops, conferences; 13= other; 99= don¿t know; 77= refused
|
|
|
od1o |
String |
150
|
Conditional |
od1 == '13' |
Specify other |
|
|
|
Query
|
od2 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Did you ever have any difficulties or delays because you had trouble getting the information you needed? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
od3 |
String |
400
|
Conditional |
diagnosed == '1' || diagnosed ==='0' && ad== '1' |
What kinds of things got in the way of your learning about autism and getting help for child? |
|
|
|
Query
|
od4 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
During this time period, did anyone ever tell you to visit a doctor or a health care provider to get a medical diagnosis of autism? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od5 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
How much trust did you have in the advice you heard from doctors or health care providers about your child? |
1::5; 999
|
1=Strong trust; 2=Some trust; 3=Neutral; 4=Some distrust; 5=Strong distrust; 999= NA/NK/missing
|
|
Query
|
od5_1 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Were there certain types of providers that you felt you were able to trust more than others? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od5_1a |
Integer |
|
Conditional |
od5_1 == 1 |
Let's start with the doctor or healthcare provider that you trusted the most. How much trust did you have in him/her? |
1::5; 999
|
1=Strong trust; 2=Some trust; 3=Neutral; 4=Some distrust; 5=Strong distrust; 999=NA/NK/missing
|
|
|
od5_1b |
String |
100
|
Conditional |
od5_1 == '1' |
What type of healthcare provider was he/she? |
|
999=NA/NK/missing
|
|
Query
|
od5_1c |
Integer |
|
Conditional |
od5_1 == 1 |
What type of professional or provider gave this first autism diagnosis? |
1::5; 999
|
1=Strong trust; 2=Some trust; 3=Neutral; 4=Some distrust; 5=Strong distrust; 999=NA/NK/missing
|
|
|
od5_1d |
String |
500
|
Conditional |
od5_1 == '1' |
What type of healthcare provider was he/she? |
|
999=NA/NK/missing
|
|
Query
|
od7_1 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You went through a divorce or major separation |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_2 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You got married or moved in with a new partner |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_3 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You experienced the birth or adoption of another child |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_4 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? A close family member died |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_5 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You had a major illness, accident, or injury that required staying in a hospital |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_6 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You lost a job |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_6a |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You changed jobs |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_7 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You experienced being arrested |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_8 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You were the victim or witness in a violent crime |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_9 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You experienced major problems with owing money: credit card debt or loan default |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_10 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You experienced major problems paying for health care for anyone in your family |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_11 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? Another child of yours was diagnosed with a serious disability or health condition |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_12 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? Another child of yours was diagnosed with a serious disability or health condition |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_13 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You or other family members stopped working because of childs special needs |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_14 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about the time between when you were first concerned and when child either got a diagnosis or started services, did following happen to you? You or other family members cut down on the hours you worked because of childs special needs |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
od7_15 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking again about the time between when you were first concerned and when child either got a diagnosis or started services, did any of the following things happen to you? You moved to a new home |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
|
od7_16 |
String |
500
|
Conditional |
diagnosed == '1' || diagnosed ==='0' && ad== '1' |
Other |
|
999=NA/NK/missing
|
|
Query
|
od8 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
Thinking about all the efforts you made to find help for your child, how easy or difficult was it to find the help you needed? |
1::5; 77; 99
|
1=Very easy; 2=Somewhat easy; 3=Neutral; 4=Somewhat difficult; 5=Very difficult; 99=don't know; 77= refused
|
|
Query
|
od9 |
Integer |
|
Conditional |
diagnosed == 1 || diagnosed ===0 && ad== 1 |
How often have you shared with other people this story about finding help for your child? |
1::5
|
1=Very often; 2=Somewhat often; 3=Neutral; 4=Not very often; 5=Almost never
|
|
Query
|
post1 |
Integer |
|
Recommended |
|
How easy or difficulty was it for you to remember information about the past events that we asked about? |
1::5
|
1=Very easy; 2=Somewhat easy; 3=Neutral; 4=Somewhat difficult; 5=Very difficult
|
|
Query
|
hc1a |
Integer |
|
Recommended |
|
What best describes your relationship status to the biological father of child? |
1::7; 77
|
1=Married; 2=Widowed; 3=Divorced; 4=Separated; 5=Never Married; 6=Living with Partner as though married; 7=Other; 77=Refused to answer
|
|
|
hc1ao |
String |
100
|
Conditional |
hc1a == '7' |
Specify other |
|
|
|
Query
|
hc1b |
String |
10
|
Recommended |
|
What best describes your current marital status? |
|
1=Married; 2=Widowed; 3=Divorced; 4=Separated; 5=Never Married; 6=Living with Partner as though married; 7=Other; 77=Refused to answer
|
|
|
hc1bo |
String |
100
|
Conditional |
hc1b == '7' |
Specify other |
|
|
|
Query
|
et2a |
Integer |
|
Recommended |
|
Highest Level of Education Achieved. Biological mother |
1::12; 99; 77
|
99=Don't know; 77=Refused; 1=8th grade or less; 2=9th grade or above, not a high school graduate; 3= high school graduate or GED; 4= post high school education, no college degree; 5=vocational-technical = degree or certificate; 6=2-year college degree/associate degree; 7= 4-year college degree/BA, BS degree; 8= some BA/BS work, no degree; 9=master degree, e.g. MSW, MA, MFA, MPH, MBA; 10=PHD, MD, JD, LLB, or other professional graduate degree; 11=other; 12=Less than high school diploma/GED
|
|
|
et2ao |
String |
500
|
Conditional |
et2a == '11' |
Specify other |
|
|
|
Query
|
et2b |
Integer |
|
Recommended |
|
Highest Level of Education Achieved. Biological father |
1::12; 99; 77
|
99=Don't know; 77=Refused; 1=8th grade or less; 2=9th grade or above, not a high school graduate; 3= high school graduate or GED; 4= post high school education, no college degree; 5=vocational-technical = degree or certificate; 6=2-year college degree/associate degree; 7= 4-year college degree/BA, BS degree; 8= some BA/BS work, no degree; 9=master degree, e.g. MSW, MA, MFA, MPH, MBA; 10=PHD, MD, JD, LLB, or other professional graduate degree; 11=other; 12=Less than high school diploma/GED
|
|
|
et2bo |
String |
100
|
Conditional |
et2b == '11' |
Specify other |
|
|
|
Query
|
oesa |
Integer |
|
Recommended |
|
What is your current employment status. Biological mother |
1::9; 99; 77
|
1=working; 2=temporarily laid off, sick leave, maternity leave; 3=unemployed - looking for work; 4=unemployed - not looking for work; 5=retired; 6=disabled - permanently or temporarily; 7=full time stay at home parent; 8=student; 9=other; 99=Don't know; 77=Refused
|
|
|
oesao |
String |
100
|
Conditional |
oesa == '9' |
Specify other |
|
|
|
Query
|
oesb |
Integer |
|
Recommended |
|
What is your current employment status. Biological father |
1::9; 99; 77
|
1=working; 2=temporarily laid off, sick leave, maternity leave; 3=unemployed - looking for work; 4=unemployed - not looking for work; 5=retired; 6=disabled - permanently or temporarily; 7=full time stay at home parent; 8=student; 9=other; 99=Don't know; 77=Refused
|
|
|
oesbo |
String |
50
|
Conditional |
oesb == '9' |
Specify other |
|
|
|
Query
|
hf4_1 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Temporary Assistance Program (TANF) |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_2 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Food Stamps Program |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_3 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Women, Infants, Children (WIC) Program |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_4 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following DFS or Division of Child and Family Services (DCFS)? |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_5 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following SSI (Supplemental Security income)? |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_6 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following SSI (Supplemental Security income)? |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_7 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Disability Pension |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_8 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Alimony |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_9 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Child Support |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_10 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Workers Compensation |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_11 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Dividends from Stocks or mutual funds |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_12 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Net Rental income from property, royalties, or trusts |
0;1
|
0=No; 1=Yes
|
|
Query
|
hf4_13 |
Integer |
|
Recommended |
|
Over the past year, have you or anyone living in your household, received any of the following Veterans (VA) payments |
0;1
|
0=No; 1=Yes
|
|
|
hf4_14 |
String |
100
|
Recommended |
|
Specify other |
|
|
|
Query
|
hf5 |
Integer |
|
Recommended |
|
Please indicate which category best describes your total household family income (income from all family members) from all sources, before taxes (GROSS INCOME), in the past 12 months. |
1::16; 77
|
1=$5,000 or less; 2=$5,001 - $10,000; 3=$10,001 - $15,000; 4=$15,001 - $20,000; 5=$20,001 - $25,000; 6=$25,001- $30,000; 7=$30,001 - $35,000; 8=$35,001 - $40,000; 9=$40,001 - $45,000; 10=$45,001 - $50,000; 11=$50,001 - $55,000; 12=$55,001 - $60,000; 13=$60,001 - $65,000; 14= 65,001 - $70,000; 15=$70,001 - $75,000; 16=More than $75,000; 77=Rather not say
|
|
Query
|
hf7 |
Integer |
|
Recommended |
|
Does anyone who lives outside of your household help pay your household bill? |
0;1
|
0=No; 1=Yes
|
|
Query
|
post2 |
Integer |
|
Recommended |
|
How would you rate the reliability of the information this parent provided? |
1::5
|
1=Highly reliable; 2=Somewhat reliable; 3=Neutral; 4=Somewhat unreliable; 5=Highly unreliable
|
|
Query
|
post3 |
Integer |
|
Recommended |
|
How would you rate the accuracy of the information this parent provided? |
1::5
|
1=Highly accurate; 2=Somewhat accurate; 3=Neutral; 4=Somewhat inaccurate; 5=Highly inaccurate
|
|
|
adiq4 |
String |
150
|
Recommended |
|
Onset age in months as perceived with hindsight |
|
|
earlydev_hind |
Query
|
adiq86 |
Integer |
|
Recommended |
|
Was abnormality clearly evident by 36 months |
0;1
|
0=No; 1=Yes
|
genbehav_ageabn |
Query
|
mpq3 |
String |
500
|
Recommended |
|
Do you remember where you had a party or special event to celebrate that year's birthday? |
|
|
|
|
a1_ad1a_o |
String |
300
|
Conditional |
ad1a == '5' |
Specify other person suspected diagnosis |
|
|
|
|
ad12_11_o |
String |
300
|
Conditional |
ad12_11 == '1' |
Specify other problems |
|
|
|
|
s2_1o |
String |
150
|
Conditional |
s2_1 == '6' || s2_1 == '7' |
Spcify other services |
|
|
|
Query
|
s2_2 |
Integer |
|
Conditional |
s1 == 1 |
What year did services begin |
|
999=NA/NK/missing
|
|
|
oc2_o |
String |
255
|
Conditional |
oc2 == '11' |
Specify other diagnoses |
|
|
|
Query
|
hf6 |
Integer |
|
Recommended |
|
On average how much money do you send/give to family and friends per month who are not living with you |
|
|
|
Query
|
age_concern |
Integer |
|
Recommended |
|
Age of first developmental concern (months) |
0 :: 1200
|
|
mpq4 |
|
fc4_o |
String |
255
|
Conditional |
fc4 == '6' |
Which one of these did you share your concerns with first. Specify other |
|
|
|
|
ad7_o |
String |
100
|
Conditional |
ad7 == '4' |
Where did that professional or provider work. Specify other |
|
|
|
|
respond_detail_oth_spec |
String |
255
|
Conditional |
relationship == '90' |
Respondent details |
|
|
respond_o |
Query
|
relationship |
Integer |
|
Recommended |
|
Relationship of respondent to individual |
|
1 = Biological mom; 2 = Biological dad; 3 = Grandparent; 4 = Special education (sped) teacher; 5 = General education teacher; 6 = Occupational therapist; 7 = Speech and language therapist; 8 = Behavioral therapist; 9 = Paraprofessional; 10 = Aide; 11 = Principal; 12 = Administrator; 14 = Content teacher; 15 = Parent center director; 16 = Self; 17=Adoptive mother; 18=Adoptive father; 19=Foster mother; 20 = Foster father; 21=Grandmother; 22=Grandfather; 23=Step-mother; 24 = Step-father; 25=Aunt; 26=Uncle; 28=Both parents;31= Grandmother from mother side; 32= Grandfather from mother side; 33= Grandmother from father side; 34= Grandfather from father side; 36= Brother; 37= Sister; 38= Cousin; 39= female caregiver; 40=male caregiver; 41=Female child; 42=Male child; 43=Spouse/Mate; 44=Friend; 45=Parent; 46=Significant other; 47=Sibling; 48=Son/Daughter; 49=Son-in-law/Daughter-in law; 50=Other Relative; 51=Paid caregiver; 52=Friends; 53=Roommate; 54=Supervisor; 55=mother's boyfriend; 56=other parental figure; 57=Summary; 58=counselor ; 59 = other female relative; 60 = other male relative; 61 = non-relative ; 62=Maternal Aunt; 63=Maternal Uncle; 64=Maternal Cousin; 65 = Paternal Aunt; 66=Paternal Uncle; 67=Paternal Cousin ; 68=Biological/Adoptive Mother and Grandmother; 69=Biological/Adoptive Mother and Stepmother and Grandmother; 70=Biological/Adoptive Mother and Grandmother and Foster Father; 71=Biological/Adoptive Mother and Stepmother and Foster Mother; 72=Biological/Adoptive Mother and Foster Mother; 73=Biological/Adoptive Mother and Biological/Adoptive Father; 74=Biological/Adoptive Mother and Stepmother and Biological/Adoptive Father; 75=Biological/Adoptive Mother and Other; 76=Biological/Adoptive Mother and Stepmother and Stepfather; 77=Biological/Adoptive Mother and Stepfather; 78=Biological/Adoptive Mother and Grandfather; 79=Biological/Adoptive Mother and Stepmother and Foster Father; 80=Biological/Adoptive Mother and Stepmother; 81=Guardian, female; 82=Other female; 83=Guardian, male; 84=Other male; 85=Other/Grandparent/Nanny; 86 = Mother, Father, Guardian; 87 = Daughter, son, grandchild; 88 = Professional (e.g., social worker, nurse, therapist, psychiatrist, or group home staff); -999=Missing; 89 = Biological parent; 90=Other; 91 = Stepparent; 92 = Adoptive parent; 93 = Foster parent; 94 = Co-worker
|
|
Query
|
ad |
Integer |
|
Conditional |
diagnosed === 0 |
Non-Dx: Has a professional ever assessed your child for a diagnosis of autism, autism spectrum disorder, PDD-NOS, or Asperger's? |
1;2; 99; 77
|
1=Yes; 2=No; 99=Don't know; 77=Refused
|
|
Query
|
ada |
Integer |
|
Conditional |
diagnosed === 0 && ad == 1 |
Non-Dx: Approximately how old was your child when he/she was first assessed for an autism spectrum disorder? |
0::400; 999
|
999=N/A
|
|
Query
|
ad2 |
Integer |
|
Conditional |
diagnosed == 1 |
Has a professional ever given child a diagnosis of autism, autism spectrum disorder, autistic disorder, PDD-NOS, or Asperger's? |
0;1; 99; 77
|
0=No; 1=Yes; 99=Don't know; 77=Refused
|
|
Query
|
ad3 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 |
When a professional or provider first officially said child had autism, what was the specific diagnosis? |
1::5; 99; 77; 998
|
99=Don't know; 77=Refused; 1=autistic disorder; 2= autism or ASD; 3=Asperger's disorder; 4=PDD-NOS; 5=other; 998=Not applicable/No official diagnosis
|
|
|
ad3o |
String |
100
|
Conditional |
diagnosed == '1' && ad3 == '5' |
Specify other |
|
|
|
Query
|
ad4 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 |
Approximately how old was child when he/she received this first official diagnosis of an autism spectrum disorder? Months |
|
999=NA/NK/missing
|
|
Query
|
ad9 |
Integer |
|
Conditional |
diagnosed == 1 && ad2 == 1 |
How satisfied were you that the diagnosis was correct once you got it? |
1::5; 99; 77; 998
|
99=Don't know; 77=Refused; 1=Very satisfied; 2=Somewhat satisfied; 3=Neutral; 4=Somewhat unsatisfied; 5=Very unsatisfied; 998=Not applicable/No official diagnosis
|
|
Query
|
ad11_5 |
Integer |
|
Conditional |
ad2 == 1 && diagnosed ==1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of getting a diagnosis? Give you printed information to help you learn more about autism? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
ad11_7 |
Integer |
|
Conditional |
ad2 == 1 && diagnosed ==1 |
Thinking about this professional or the team of professionals, did they do any of the following during the process of getting a diagnosis? Help you connect to a support organization that helps families deal with autism? |
0;1; 99; 77; 9
|
0=No; 1=Yes; 99=Don't know; 77=Refused; 9=n/a
|
|
Query
|
s2_3 |
Integer |
|
Conditional |
s1 == 1 |
Did these first services begin before or after you were told that child has autism? |
1;2; 99; 77; 998
|
1=Services began before the diagnosis of autism; 2=Services began after the diagnosis of autism; 99= Don¿t know; 77=Refused; 998=Not Applicable/No Special Services
|
|
Query
|
od6 |
Integer |
|
Conditional |
diagnosed == 1 |
Before child had a diagnosis of autism, how concerned were you about child having a label like autism? |
1::5; 999
|
1=Very concerned; 2=Somewhat concerned; 3=Neutral; 4=Somewhat unconcerned; 5=Very unconcerned; 999=NA/NK/missing
|
|
Query
|
diagnosed |
Integer |
|
Required |
|
Was the individual officialy diagnosed with ASD or is it suspected to have ASD? |
0;1
|
0=Supected ASD ; 1=Diagnosed ASD
|
|