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NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL

Diagnostic Odyssey Instrument

1,186 Shared Subjects

ACE-2 EHCI: Diagnostic Odyssey Instrument v7
Clinical Assessments
Diagnostic
03/03/2014
odyssey01
03/03/2014
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Condition Description Value Range Notes Aliases
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::94;-999
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
Data Structure

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