Researcher Code Book
   

Child with ASD Questionnaire - 2.0.3 (exported at 1/28/2013 6:00:05 AM)

This questionnaire asks about your child that has been diagnosed with an Autism Spectrum Disorder (ASD). Many of the questions are about your child's diagnosis and medical history. There are 65 potential questions and it will take you approximately 15 minutes to complete


Section 1: AUTISM SPECTRUM DISORDER HISTORY

The following questions are about your experience in receiving a diagnosis for your child with ASD

It may be helpful to have with you any materials regarding your child's diagnosis.


Section 1, Question 1 - field name: first_asd_dx

What was |display_name|`s FIRST autism spectrum disorder (ASD) diagnosis?


Coded ValueResponse
1Autism or Autistic disorder
2Asperger's Syndrome
3Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
4Childhood Disintegrative Disorder (CDD)
5Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
6Autism Spectrum Disorder (ASD) (choose only if none of the above apply)

31% Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)  (responses=3,110) 15% Asperger's Syndrome  (responses=1,470) 39% Autism or Autistic disorder  (responses=3,941) 10% Autism Spectrum Disorder (ASD) (choose only if none of the above apply) (responses=961) 5% Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)  (responses=482) 0% Childhood Disintegrative Disorder (CDD)  (responses=15)

Section 1, Question 2 - field name: first_asd_dx_date

When did |display_name| receive this FIRST ASD diagnosis?

Please indicate the date as accurately as you can. If you do not know the day or month, choose "Don't Know" from the drop down menus.

DataType date has no graph display

Section 1, Question 3 - field name: first_asd_dx_age

Approximately how old was |display_name| when he/she received this FIRST ASD diagnosis?

Coded ValueResponse
1less than 12 months
212 months to 17 months
318 months to 23 months
42 years old
53 years old
64 years old
75 years old
86 years old
97 years old
108 years old
119 years old
1210 years old
1311 years old
1412 years old
1513 years old
1614 years old
1715 years old
1816 years old
1917 years old

7% 5 years old (responses=10) 17% 4 years old (responses=25) 4% 7 years old (responses=6) 5% 6 years old (responses=7) 23% 3 years old (responses=34) 3% 12 months to 17 months (responses=5) 1% less than 12 months (responses=2) 20% 2 years old (responses=30) 9% 18 months to 23 months (responses=13) 5% 8 years old (responses=7) 1% 14 years old (responses=1) 1% 10 years old (responses=2) 2% 9 years old (responses=3) 1% 12 years old (responses=1) 1% 11 years old (responses=1)

Section 1, Question 4 - field name: first_asd_dx_person

Who gave |display_name| this FIRST ASD diagnosis?

Coded ValueResponse
1Pediatrician
2Primary care doctor (other than pediatrician)
3Developmental pediatrician
4Psychiatrist
5Clinical Psychologist
6Neurologist
7Team of health professionals
8Team of professionals in a school system
9Speech and Language Pathologist
-9999Other

10% Psychiatrist (responses=990) 19% Clinical Psychologist (responses=1,852) 20% Developmental pediatrician (responses=2,035) 5% Pediatrician (responses=468) 0% Primary care doctor (other than pediatrician) (responses=43) 2% Speech and Language Pathologist (responses=166) 5% Other (responses=506) 11% Team of professionals in a school system (responses=1,057) 15% Neurologist (responses=1,492) 14% Team of health professionals (responses=1,379)

Section 1, Question 5 - field name: first_asd_dx_location

Where did |display_name| receive this FIRST ASD diagnosis?

Coded ValueResponse
1Public school system
2Health care system (including a clinic or regional center specializing in ASDs)
3Early intervention program
-9999Other

63% Health care system (including a clinic or regional center specializing in ASDs) (responses=6,278) 10% Public school system (responses=1,001) 12% Other (responses=1,154) 16% Early intervention program (responses=1,552)

Section 1, Question 6 - field name: cur_asd_dx_diff

Is |display_name|`s CURRENT ASD diagnosis different than the FIRST?

Coded ValueResponse
1Yes, the CURRENT diagnosis is different
2No, the CURRENT diagnosis is the same

24% Yes, the CURRENT diagnosis is different (responses=2,385) 76% No, the CURRENT diagnosis is the same (responses=7,588)

Section 1, Question 7 - field name: cur_asd_dx

What is |display_name|`s CURRENT ASD diagnosis?

Coded ValueResponse
1Autism or Autistic disorder
2Asperger's Syndrome
3Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)
4Childhood Disintegrative Disorder (CDD)
5Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
6Autism Spectrum Disorder (ASD) (choose only if none of the above apply)
7My child has fully recovered and no longer as an ASD (according to a professional)

14% Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (responses=324) 24% Asperger's Syndrome (responses=575) 47% Autism or Autistic disorder (responses=1,121) 0% Childhood Disintegrative Disorder (CDD) (responses=3) 2% My child has fully recovered and no longer as an ASD (according to a professional) (responses=47) 11% Autism Spectrum Disorder (ASD) (choose only if none of the above apply) (responses=262) 2% Pervasive Developmental Disorder (PDD) (choose only if none of the above apply) (responses=58)

Section 1, Question 8 - field name: cur_asd_dx_date

When did |display_name| receive this CURRENT ASD diagnosis?

Please indicate the date as accurately as you can. If you do not know the day or month, choose "Don't Know" from the drop down menus

DataType date has no graph display

Section 1, Question 9 - field name: cur_asd_dx_age

Approximately how old was |display_name| when he/she received this CURRENT ASD diagnosis?

Coded ValueResponse
1less than 12 months
212 months to 17 months
318 months to 23 months
42 years old
53 years old
64 years old
75 years old
86 years old
97 years old
108 years old
119 years old
1210 years old
1311 years old
1412 years old
1513 years old
1614 years old
1715 years old
1816 years old
1917 years old

15% 5 years old (responses=12) 21% 4 years old (responses=17) 8% 7 years old (responses=6) 11% 6 years old (responses=9) 9% 3 years old (responses=7) 1% less than 12 months (responses=1) 10% 2 years old (responses=8) 1% 18 months to 23 months (responses=1) 6% 8 years old (responses=5) 4% 10 years old (responses=3) 8% 9 years old (responses=6) 3% 12 years old (responses=2) 4% 11 years old (responses=3)

Section 1, Question 10 - field name: cur_asd_dx_person

Who gave |display_name| this CURRENT ASD diagnosis?

Coded ValueResponse
1Pediatrician
2Primary care doctor (other than pediatrician)
3Developmental pediatrician
4Psychiatrist
5Clinical Psychologist
6Neurologist
7Team of health professionals
8Team of professionals in a school system
9Speech and Language Pathologist
-9999Other

15% Psychiatrist (responses=358) 18% Clinical Psychologist (responses=442) 17% Developmental pediatrician (responses=412) 3% Pediatrician (responses=61) 1% Primary care doctor (other than pediatrician) (responses=13) 1% Speech and Language Pathologist (responses=17) 5% Other (responses=118) 13% Team of professionals in a school system (responses=316) 13% Neurologist (responses=323) 14% Team of health professionals (responses=335)

Section 1, Question 11 - field name: cur_asd_dx_location

Where did |display_name| receive this CURRENT ASD diagnosis?

Coded ValueResponse
1Public school system
2Health care system (including a clinic or regional center specializing in ASDs)
3Early intervention program
-9999Other

68% Health care system (including a clinic or regional center specializing in ASDs) (responses=1,623) 16% Public school system (responses=374) 12% Other (responses=281) 5% Early intervention program (responses=122)

Section 1, Question 12 - field name: first_concern_age_apprx

How old was |display_name| when you FIRST became concerned that something was wrong with his/her development?

Coded ValueResponse
1Never concerned
2At birth
3Less than 6 months old
46 months to 11 months old
512 months to 17 months old
618 months to 23 months old
72 years old
83 years old
94 years old
105 years old
116 years old
127 years old
138 years old
149 years old
1510 years old
1611 years old
1712 years old
1813 years old
1914 years old
2015 years old
2116 years old
2217 years old

15% 2 years old (responses=1,519) 22% 18 months to 23 months old (responses=2,152) 8% 3 years old (responses=753) 2% 5 years old (responses=153) 3% 4 years old (responses=269) 4% At birth (responses=420) 1% Never concerned (responses=52) 9% Less than 6 months old (responses=882) 23% 12 months to 17 months old (responses=2,312) 13% 6 months to 11 months old (responses=1,323) 1% 6 years old (responses=72) 0% 13 years old (responses=3) 0% 12 years old (responses=5) 0% 15 years old (responses=1) 0% 8 years old (responses=20) 0% 7 years old (responses=27) 0% 9 years old (responses=12) 0% 11 years old (responses=5) 0% 10 years old (responses=6)

Section 1, Question 13 - field name: first_concern_age_spec, measurement unit in month(s)

If you remember, please give |display_name|'s exact age (in years and months) that you FIRST became concerned that something was wrong with his/her development.

Coded ValueResponse
ValueUser Entered Coded Value

 0% 102 (responses=5)  0% 96 (responses=6)  0% 90 (responses=4)  0% 84 (responses=8)  0% 80 (responses=4)  0% 78 (responses=15)  0% 75 (responses=4)  0% 74 (responses=4)  0% 72 (responses=18)  0% 71 (responses=5)  0% 70 (responses=9)  0% 68 (responses=8)  0% 67 (responses=6)  0% 66 (responses=22)  0% 65 (responses=7)  0% 64 (responses=7)  0% 63 (responses=8)  0% 62 (responses=7)  0% 61 (responses=9)  0% 60 (responses=43)  0% 59 (responses=4)  0% 58 (responses=5)  0% 57 (responses=8)  0% 56 (responses=12)  0% 54 (responses=39)  0% 53 (responses=11)  0% 52 (responses=9)  0% 51 (responses=23)  0% 50 (responses=17)  0% 49 (responses=11)  1% 48 (responses=102)  0% 47 (responses=8)  0% 46 (responses=17)  0% 45 (responses=19)  0% 44 (responses=14)  0% 43 (responses=7)  1% 42 (responses=109)  0% 41 (responses=22)  0% 40 (responses=41)  0% 39 (responses=43)  1% 38 (responses=48)  0% 37 (responses=41)  3% 36 (responses=304)  0% 35 (responses=14)  0% 34 (responses=37)  1% 33 (responses=56)  1% 32 (responses=52)  0% 31 (responses=29)  4% 30 (responses=337)  1% 29 (responses=51)  1% 28 (responses=63)  1% 27 (responses=112)  1% 26 (responses=95)  1% 25 (responses=75)  6% 24 (responses=572)  1% 23 (responses=103)  2% 22 (responses=200)  1% 21 (responses=99)  3% 20 (responses=254)  2% 19 (responses=151)  13% 18 (responses=1,182)  2% 17 (responses=214)  3% 16 (responses=296)  6% 15 (responses=592)  3% 14 (responses=284)  2% 13 (responses=211)  7% 12 (responses=647)  1% 11 (responses=131)  2% 10 (responses=209)  3% 9 (responses=263)  2% 8 (responses=199)  1% 7 (responses=109)  5% 6 (responses=431)  1% 5 (responses=90)  2% 4 (responses=181)  3% 3 (responses=256)  1% 2 (responses=134)  5% 1 (responses=426)  0% 0.5 (responses=4)  0% 0 (responses=13)

Section 1, Question 14 - field name: first_concern_New

What was your FIRST concern about |display_name|'s development?

Please try to remember what specific concern first made you think something might be wrong with your child's development.

Coded ValueResponse
1More focused on objects or self (minimal interest in other people)
2Did not initiate or rarely initiated social interaction
3Poor eye contact
4Delayed or absent response to his/her own name (appeared not to hear)
5Delayed or abnormal babbling or speaking
6Repetitive behaviors (such as hand flapping or rocking)
7Self-injurious behaviors (head-banging)
8Unusually intense interests in certain topics, toys, or activities (such as lining up objects)
9Unusual responses to touch, taste, smell, or sounds
10Did not point, gesture or imitate others
11Started losing skills
12Did not need as much sleep as other children of the same age
13Abnormal motor development or muscle tone (unusually stiff or floppy)
14Other people told me something was wrong
-9999Other

23% Delayed or abnormal babbling or speaking (responses=2,290) 5% Repetitive behaviors (such as hand flapping or rocking) (responses=490) 2% Self-injurious behaviors (head-banging) (responses=237) 10% Delayed or absent response to his/her own name (appeared not to hear) (responses=1,036) 4% More focused on objects or self (minimal interest in other people) (responses=414) 5% Did not initiate or rarely initiated social interaction (responses=465) 5% Poor eye contact  (responses=528) 4% Unusually intense interests in certain topics, toys, or activities (such as lining up objects) (responses=381) 6% Abnormal motor development or muscle tone (unusually stiff or floppy) (responses=581) 5% Other people told me something was wrong  (responses=528) 12% Other (responses=1,158) 2% Did not need as much sleep as other children of the same age (responses=235) 4% Unusual responses to touch, taste, smell, or sounds  (responses=413) 2% Did not point, gesture or imitate others (responses=247) 9% Started losing skills  (responses=893)

Section 1, Question 15 - field name: lose_skills

Did |display_name| lose words, daily living skills, motor abilities, or social skills that he/she previously had?

Coded ValueResponse
0No
1Yes

58% No (responses=5,782) 42% Yes (responses=4,190)

Section 1, Question 16 - field name: skills_lost_level

How significant was |display_name|'s loss of skills?

Coded ValueResponse
1Severe
2Moderate
3Mild

34% Severe (responses=1,429) 42% Moderate (responses=1,781) 23% Mild (responses=983)

Section 1, Question 17 - field name: lost_skills

Which type of skill was affected the most?

Coded ValueResponse
1Speech and language
2Motor abilities (like walking, jumping, and playing with small toys)
3Social skills (like eye contact and playing with other children)
4Daily living skills (like feeding oneself and toileting)
-9999Other

3% Motor abilities (like walking, jumping, and playing with small toys) (responses=133) 71% Speech and language (responses=2,994) 19% Social skills  (like eye contact and playing with other children) (responses=812) 3% Other (responses=121) 3% Daily living skills (like feeding oneself and toileting) (responses=134)

Section 1, Question 18 - field name: skills_lost_age, measurement unit in month(s)

What age was |display_name| when you FIRST noticed this loss of skills?

Please give the exact age in years and months as best as you can remember.

Coded ValueResponse
ValueUser Entered Coded Value

 0% 144 (responses=3)  0% 132 (responses=2)  0% 108 (responses=3)  0% 102 (responses=3)  0% 98 (responses=4)  0% 96 (responses=4)  0% 90 (responses=3)  0% 87 (responses=3)  0% 84 (responses=11)  0% 83 (responses=3)  0% 82 (responses=2)  0% 79 (responses=3)  0% 78 (responses=5)  0% 75 (responses=2)  0% 74 (responses=2)  0% 73 (responses=2)  0% 72 (responses=15)  0% 70 (responses=4)  0% 68 (responses=3)  0% 67 (responses=2)  0% 66 (responses=9)  0% 65 (responses=2)  0% 64 (responses=3)  0% 62 (responses=3)  0% 60 (responses=17)  0% 58 (responses=4)  0% 56 (responses=3)  0% 54 (responses=9)  0% 53 (responses=4)  0% 52 (responses=4)  0% 51 (responses=5)  0% 50 (responses=6)  0% 49 (responses=2)  1% 48 (responses=55)  0% 47 (responses=2)  0% 46 (responses=4)  0% 45 (responses=8)  0% 43 (responses=4)  1% 42 (responses=32)  0% 41 (responses=9)  0% 40 (responses=15)  0% 39 (responses=17)  0% 38 (responses=16)  0% 37 (responses=7)  3% 36 (responses=130)  0% 35 (responses=9)  1% 34 (responses=22)  1% 33 (responses=23)  1% 32 (responses=31)  0% 31 (responses=20)  3% 30 (responses=141)  1% 29 (responses=25)  1% 28 (responses=43)  2% 27 (responses=62)  2% 26 (responses=71)  1% 25 (responses=51)  9% 24 (responses=365)  1% 23 (responses=51)  2% 22 (responses=100)  2% 21 (responses=79)  4% 20 (responses=183)  3% 19 (responses=104)  17% 18 (responses=693)  3% 17 (responses=139)  5% 16 (responses=193)  8% 15 (responses=344)  0% 14.5 (responses=3)  5% 14 (responses=189)  3% 13 (responses=124)  7% 12 (responses=277)  1% 11 (responses=46)  1% 10 (responses=56)  1% 9 (responses=61)  1% 8 (responses=21)  0% 7 (responses=15)  1% 6 (responses=37)  0% 5 (responses=7)  0% 4 (responses=7)  0% 3 (responses=4)  0% 2 (responses=3)  0% 0 (responses=4)

Section 1, Question 19 - field name: plateau

Did your child's development plateau or halt such that he/she stopped gaining new skills but retained previously acquired skills?

Coded ValueResponse
0No
1Yes

68% No (responses=3,812) 32% Yes (responses=1,771)

Section 1, Question 20 - field name: plateau_age, measurement unit in month(s)

What age was your child when you FIRST noticed this plateau or halt in his/her development?

Please give the exact age in years and months as best as you can remember. 

Coded ValueResponse
ValueUser Entered Coded Value

 0% 24070 (responses=1)  0% 180 (responses=1)  0% 168 (responses=1)  0% 156 (responses=1)  0% 150 (responses=1)  0% 147 (responses=1)  0% 144 (responses=3)  0% 135 (responses=1)  0% 132 (responses=1)  0% 123 (responses=2)  0% 122 (responses=1)  0% 121 (responses=1)  0% 120 (responses=8)  0% 119 (responses=1)  0% 116 (responses=1)  0% 115 (responses=1)  0% 114 (responses=2)  0% 109 (responses=1)  0% 108 (responses=3)  0% 102 (responses=3)  0% 99 (responses=1)  0% 97 (responses=1)  1% 96 (responses=11)  0% 94 (responses=1)  0% 92 (responses=1)  0% 90 (responses=1)  0% 87 (responses=1)  0% 86 (responses=1)  0% 84 (responses=8)  0% 83 (responses=1)  0% 80 (responses=1)  0% 78 (responses=2)  0% 75 (responses=3)  0% 73 (responses=1)  1% 72 (responses=16)  0% 71 (responses=1)  0% 70 (responses=1)  0% 68 (responses=1)  0% 67 (responses=1)  0% 66 (responses=5)  0% 64 (responses=1)  0% 63 (responses=1)  0% 62 (responses=1)  0% 61 (responses=1)  1% 60 (responses=25)  0% 58 (responses=4)  0% 56 (responses=2)  0% 54 (responses=8)  0% 53 (responses=1)  0% 52 (responses=5)  0% 51 (responses=4)  0% 50 (responses=5)  0% 49 (responses=5)  2% 48 (responses=37)  0% 47 (responses=1)  0% 46 (responses=2)  0% 45 (responses=3)  0% 44 (responses=4)  0% 43 (responses=3)  2% 42 (responses=40)  0% 41 (responses=4)  0% 40 (responses=6)  0% 39 (responses=4)  0% 38 (responses=7)  0% 37 (responses=6)  7% 36 (responses=111)  0% 35 (responses=2)  0% 34 (responses=7)  1% 33 (responses=9)  1% 32 (responses=13)  0% 31 (responses=6)  5% 30 (responses=83)  0% 29 (responses=8)  1% 28 (responses=21)  1% 27 (responses=20)  1% 26 (responses=21)  0% 25 (responses=7)  14% 24 (responses=238)  1% 23 (responses=11)  1% 22 (responses=24)  1% 21 (responses=10)  3% 20 (responses=47)  1% 19 (responses=18)  14% 18 (responses=228)  2% 17 (responses=27)  2% 16 (responses=33)  6% 15 (responses=103)  3% 14 (responses=48)  2% 13 (responses=34)  8% 12 (responses=141)  1% 11 (responses=12)  2% 10 (responses=26)  2% 9 (responses=26)  1% 8 (responses=22)  0% 7 (responses=6)  2% 6 (responses=26)  0% 5 (responses=3)  0% 4 (responses=8)  0% 3 (responses=3)  0% 1 (responses=2)

Section 1, Question 21 - field name: iq_test

Has |display_name| ever been given an IQ test or intelligence test?

Coded ValueResponse
0No
1Yes

50% No (responses=4,972) 50% Yes (responses=4,888)

Section 1, Question 22 - field name: iq_test_score

What was |display_name|`s most recent IQ test score?

Coded ValueResponse
140 or below
241 - 55
356 - 70
471 - 85
586 - 115
6116 - 130
7Above 130

13% 56 - 70 (responses=523) 7% 41 - 55 (responses=300) 6% 40 or below (responses=230) 18% 71 - 85 (responses=712) 9% Above 130 (responses=352) 16% 116 - 130 (responses=641) 31% 86 - 115 (responses=1,263)

Section 1, Question 23 - field name: ados

Has |display_name| ever been given the ADOS (Autism Diagnostic Observation Schedule)?

This is a "test" commonly used to determine if a child has an autism spectrum disorder. An examiner observes the child's communication and social interaction looking for behaviors that are common in autism spectrum disorders. It usually takes 1-2 hours.

Coded ValueResponse
0No
1Yes

38% No (responses=3,504) 62% Yes (responses=5,750)

Section 1, Question 24 - field name: ados_asd_dx

Did the ADOS show that |display_name| had an autism spectrum disorder?

Coded ValueResponse
0No
1Yes

3% No (responses=177) 97% Yes (responses=5,522)

Section 1, Question 25 - field name: adir

Have you ever completed the ADI (Autism Diagnostic Interview) for |display_name|?

This "test" involves interviewing the parent(s) or other primary caregiver. The interviewer asks a lot of questions about the child's communication, social interactions and development. The child does not have to be in the room. The interview usually lasts 1-2 hours.

Coded ValueResponse
0No
1Yes

32% No (responses=3,026) 68% Yes (responses=6,472)

Section 1, Question 26 - field name: adir_score_dx

Did the ADI (Autism Diagnostic Interview) show that |display_name| had an autism spectrum disorder?

Coded ValueResponse
1Yes
2No
3Results were not given

87% Yes (responses=5,617) 2% No (responses=101) 11% Results were not given (responses=713)

Section 1, Question 27 - field name: mri

Has |display_name| had an MRI (magnetic resonance imaging) of his/her brain?

An MRI looks at the structure of the brain. It requires the child to be very still and usually medicine is given to make the child sleepy. The test usually takes one HOUR and requires all metal objects to be removed.

Coded ValueResponse
0No
1Yes

72% No (responses=7,224) 28% Yes (responses=2,746)

Section 1, Question 28 - field name: mri_results

Were the results from the MRI (magnetic resonance imaging) normal for |display_name|?

Coded ValueResponse
1Yes, results were normal
2No, results were not normal

79% Yes, results were normal (responses=2,110) 21% No, results were not normal  (responses=560)

Section 1, Question 29 - field name: ct_scan

Has |display_name| had a CT Scan of his/her brain?

A CT looks at the structure of the brain (but in less detail than the MRI). It also requires the child to be very still and sometimes medicine is given to make the child sleepy. This test only takes about 15 MINUTES

Coded ValueResponse
0No
1Yes

85% No (responses=8,472) 15% Yes (responses=1,469)

Section 1, Question 30 - field name: ct_scan_results

Were the results from the CT Scan normal?

Coded ValueResponse
1Yes, results were normal
2No, results were not normal

82% Yes, results were normal (responses=1,173) 18% No, results were not normal  (responses=258)

Section 1, Question 31 - field name: eeg

Has |display_name| had an (EEG) electroencephalogram of his/her brain?

An (EEG) is a test to detect abnormalities in the electrical activity of the brain. Many small electrodes (metal discs) are placed on the scalp. The test is used to study seizure disorders and sleep disorders.

Coded ValueResponse
0No
1Yes

66% No (responses=6,594) 34% Yes (responses=3,366)

Section 1, Question 32 - field name: eeg_results

Were the results of the (EEG) electroencephalogram normal for |display_name|?

Coded ValueResponse
1Yes, results were normal
2No, results were not normal

75% Yes, results were normal (responses=2,459) 25% No, results were not normal  (responses=838)


Section 2: DEVELOPMENTAL HISTORY

The following questions are about your child's developmental milestones.

You should not need any special materials or records to answer these questions.


Section 2, Question 1 - field name: walk_age_apprx

How old was |display_name| when he/she first walked?

Coded ValueResponse
0Never or not yet
1Less than 12 months
212 months to 17 months
318 months to 23 months
42 years
53 years
64 to 6 years
77 years or older

54% 12 months to 17 months (responses=5,398) 10% 18 months to 23 months (responses=1,031) 0% Never or not yet (responses=22) 31% Less than 12 months  (responses=3,107) 0% 4 to 6 years  (responses=29) 0% 7 years or older (responses=4) 3% 2 years  (responses=287) 1% 3 years  (responses=79)

Section 2, Question 2 - field name: walk_age, measurement unit in month(s)

If you remember, please give the exact age (in years and months) that |display_name| first walked.

Coded ValueResponse
ValueUser Entered Coded Value

 0% 48 (responses=13)  0% 42 (responses=6)  0% 41 (responses=7)  0% 40 (responses=8)  0% 38 (responses=6)  0% 37 (responses=4)  0% 36 (responses=23)  0% 35 (responses=4)  0% 34 (responses=4)  0% 33 (responses=6)  0% 32 (responses=10)  0% 31 (responses=5)  0% 30 (responses=38)  0% 29 (responses=6)  0% 28 (responses=12)  0% 27 (responses=22)  0% 26 (responses=33)  0% 25 (responses=29)  1% 24 (responses=109)  0% 23 (responses=45)  1% 22 (responses=72)  1% 21 (responses=62)  1% 20 (responses=121)  2% 19 (responses=183)  5% 18 (responses=427)  0% 17.5 (responses=6)  3% 17 (responses=307)  5% 16 (responses=438)  0% 15.5 (responses=11)  8% 15 (responses=754)  0% 14.5 (responses=6)  11% 14 (responses=1,024)  0% 13.5 (responses=14)  14% 13 (responses=1,331)  0% 12.5 (responses=12)  13% 12 (responses=1,211)  0% 11.5 (responses=37)  13% 11 (responses=1,242)  0% 10.5 (responses=28)  10% 10 (responses=926)  0% 9.5 (responses=20)  6% 9 (responses=558)  1% 8 (responses=97)  0% 7 (responses=40)  0% 6 (responses=5)  0% 0 (responses=8)

Section 2, Question 3 - field name: talk_age_apprx

How old was |display_name| when he/she said his/her first words?

Coded ValueResponse
0Never or not yet
1Less than 12 months
212 months to 17 months
318 months to 23 months
42 years
53 years
64 years
75 years
86 years
97 years
108 years
119 years
1210 years
1311 years
1412 years
1513 years
1614 years
1715 years
1816 years
1917 years

2% 4 years (responses=227) 6% 3 years (responses=626) 1% 5 years (responses=78) 0% 7 years (responses=13) 0% 6 years (responses=22) 38% Less than 12 months  (responses=3,762) 4% Never or not yet (responses=408) 26% 12 months to 17 months (responses=2,572) 10% 2 years (responses=979) 12% 18 months to 23 months (responses=1,180) 0% 9 years (responses=2) 0% 8 years (responses=7) 0% 10 years (responses=3)

Section 2, Question 4 - field name: talk_age, measurement unit in month(s)

If you remember, please give the exact age (in years and months) that |display_name| said his/her first words.

Coded ValueResponse
ValueUser Entered Coded Value

 0% 120 (responses=2)  0% 96 (responses=2)  0% 90 (responses=2)  0% 84 (responses=5)  0% 72 (responses=13)  0% 70 (responses=2)  0% 69 (responses=2)  0% 68 (responses=2)  0% 66 (responses=3)  0% 65 (responses=2)  0% 64 (responses=4)  0% 62 (responses=9)  0% 61 (responses=4)  0% 60 (responses=32)  0% 56 (responses=2)  0% 55 (responses=3)  0% 54 (responses=24)  0% 53 (responses=13)  0% 52 (responses=14)  0% 51 (responses=14)  0% 50 (responses=19)  0% 49 (responses=13)  1% 48 (responses=82)  0% 47 (responses=3)  0% 46 (responses=12)  0% 45 (responses=8)  0% 44 (responses=11)  0% 43 (responses=7)  1% 42 (responses=82)  0% 41 (responses=21)  1% 40 (responses=40)  0% 39 (responses=37)  1% 38 (responses=52)  0% 37 (responses=34)  3% 36 (responses=202)  0% 35 (responses=20)  0% 34 (responses=29)  0% 33 (responses=15)  0% 32 (responses=25)  0% 31 (responses=16)  2% 30 (responses=141)  0% 29 (responses=39)  1% 28 (responses=50)  1% 27 (responses=73)  1% 26 (responses=89)  1% 25 (responses=69)  4% 24 (responses=287)  1% 23 (responses=78)  1% 22 (responses=102)  1% 21 (responses=63)  2% 20 (responses=146)  1% 19 (responses=86)  5% 18 (responses=417)  1% 17 (responses=116)  2% 16 (responses=176)  4% 15 (responses=310)  4% 14 (responses=287)  0% 13.5 (responses=2)  4% 13 (responses=337)  0% 12.5 (responses=2)  10% 12 (responses=828)  0% 11.5 (responses=2)  7% 11 (responses=532)  0% 10.5 (responses=2)  9% 10 (responses=713)  0% 9.5 (responses=2)  8% 9 (responses=668)  0% 8.5 (responses=3)  6% 8 (responses=454)  0% 7.5 (responses=3)  4% 7 (responses=289)  5% 6 (responses=388)  0% 5.5 (responses=3)  1% 5 (responses=96)  1% 4 (responses=70)  0% 3 (responses=27)  0% 2 (responses=8)  0% 0 (responses=25)

Section 2, Question 5 - field name: age_mngfl_speach

How old was |display_name| when he/she was able to use two to three words together for meaningful speech?

Coded ValueResponse
0Never or not yet
1Less than 12 months
212 months to 17 months
318 months to 23 months
42 years
53 years
64 years
75 years
86 years
97 years
108 years
119 years
1210 years
1311 years
1412 years
1513 years
1614 years
1715 years
1816 years
1917 years

12% 4 years  (responses=1,146) 22% 3 years (responses=2,019) 5% 5 years (responses=501) 1% 7 years (responses=93) 2% 6 years (responses=213) 3% Less than 12 months  (responses=288) 14% Never or not yet (responses=1,303) 13% 12 months to 17 months (responses=1,207) 16% 2 years (responses=1,475) 11% 18 months to 23 months (responses=999) 0% 13 years (responses=5) 0% 15 years (responses=2) 0% 17 years (responses=1) 0% 16 years (responses=1) 0% 9 years (responses=27) 1% 8 years (responses=65) 0% 10 years (responses=15) 0% 12 years (responses=6) 0% 11 years (responses=12)

Section 2, Question 6 - field name: toilet_trained_age

How old was |display_name| when he/she was toilet trained?

Toilet trained means urinating and moving bowels in toilet most of the time

Coded ValueResponse
0Never or not yet
1Less than 12 months
212 months to 17 months
318 months to 23 months
42 years
53 years
64 years
75 years
86 years
97 years
108 years
119 years
1210 years
1311 years
1412 years
1513 years
1614 years
1715 years
1816 years
1917 years

21% 4 years (responses=2,063) 23% 3 years  (responses=2,281) 4% 6 years (responses=381) 10% 5 years (responses=963) 5% 2 years  (responses=510) 0% Less than 12 months (responses=8) 31% Never or not yet (responses=3,122) 2% 18 months to 23 months (responses=164) 1% 12 months to 17 months (responses=69) 2% 7 years (responses=174) 0% 14 years (responses=3) 0% 13 years (responses=7) 0% 16 years (responses=1) 0% 15 years (responses=1) 0% 12 years (responses=14) 0% 9 years (responses=42) 1% 8 years (responses=108) 0% 11 years (responses=11) 0% 10 years (responses=44)


Section 3: BIRTH HISTORY

The following questions are about your child's birth. You may want to have on-hand birth records, including birth weight.


Section 3, Question 1 - field name: preg_length

What was the length of the pregnancy with |display_name|?

Coded ValueResponse
1Very premature or very early (lfewer than 34 weeks)
2Premature or early (34 weeks through 36 weeks)
3On or near due date (37 weeks through 41 weeks)
4More than 2 weeks late (42 weeks or more)

13% Premature or early (34 weeks through 36 weeks) (responses=1,291) 4% Very premature or very early (lfewer than 34 weeks) (responses=394) 6% More than 2 weeks late (42 weeks or more) (responses=547) 78% On or near due date (37 weeks through 41 weeks) (responses=7,713)

Section 3, Question 2 - field name: birth_type

Which one of these describes |display_name|'s birth?

Coded ValueResponse
1Single birth
2Twins
3Triplets
4Quadruplets (4 babies at one time)
5Other (5 or more babies at one time)

5% Twins (responses=520) 94% Single birth (responses=9,406) 1% Triplets (responses=54) 0% Quadruplets (4 babies at one time) (responses=3)

Section 3, Question 3 - field name: birth_order

What was |display_name|`s BIRTH ORDER?

Do not include miscarriages. Count twins as two births

Coded ValueResponse
11st
22nd
33rd
44th
55th
66th
77th
88th or higher

11% 3rd (responses=1,144) 4% 4th (responses=389) 51% 1st (responses=5,057) 32% 2nd (responses=3,160) 0% 7th (responses=16) 0% 8th or higher (responses=18) 1% 5th (responses=118) 1% 6th (responses=53)

Section 3, Question 4 - field name: birth_weight, measurement unit in oz

How much did |display_name| weigh at birth?

Please provide in pounds and ounces.

Coded ValueResponse
ValueUser Entered Coded Value

 0% 214 (responses=1)  0% 198 (responses=1)  0% 196 (responses=1)  0% 195 (responses=1)  0% 192 (responses=3)  0% 189 (responses=2)  0% 188 (responses=2)  0% 187 (responses=1)  0% 186 (responses=2)  0% 185 (responses=1)  0% 184 (responses=1)  0% 183 (responses=1)  0% 182 (responses=1)  0% 179 (responses=2)  0% 178 (responses=3)  0% 177 (responses=4)  0% 176 (responses=6)  0% 175 (responses=6)  0% 174 (responses=2)  0% 173 (responses=8)  0% 172 (responses=8)  0% 171.2 (responses=1)  0% 171 (responses=9)  0% 170.5 (responses=1)  0% 170 (responses=4)  0% 169.5 (responses=1)  0% 169 (responses=7)  0% 168.3 (responses=1)  0% 168 (responses=14)  0% 167.4 (responses=1)  0% 167 (responses=7)  0% 166.5 (responses=1)  0% 166 (responses=11)  0% 165.9 (responses=1)  0% 165.8 (responses=1)  0% 165.4 (responses=1)  0% 165 (responses=6)  0% 164.5 (responses=2)  0% 164.1 (responses=1)  0% 164 (responses=20)  0% 163 (responses=26)  0% 162 (responses=27)  0% 161.5 (responses=1)  0% 161 (responses=26)  0% 160.9 (responses=1)  0% 160.5 (responses=3)  0% 160.4 (responses=1)  0% 160 (responses=33)  0% 159.6 (responses=1)  0% 159.5 (responses=2)  0% 159 (responses=24)  0% 158.8 (responses=1)  0% 158.6 (responses=1)  0% 158.5 (responses=1)  0% 158 (responses=25)  0% 157.8 (responses=1)  0% 157 (responses=39)  0% 156.5 (responses=1)  0% 156 (responses=47)  0% 155 (responses=46)  0% 154.5 (responses=3)  0% 154.3 (responses=1)  0% 154 (responses=45)  0% 153.5 (responses=1)  0% 153 (responses=30)  0% 152.5 (responses=2)  0% 152.4 (responses=1)  1% 152 (responses=64)  0% 151.8 (responses=1)  0% 151.75 (responses=1)  0% 151.5 (responses=3)  0% 151 (responses=40)  0% 150.8 (responses=1)  0% 150.4 (responses=1)  0% 150.1 (responses=1)  1% 150 (responses=80)  0% 149.8 (responses=1)  0% 149.6 (responses=1)  0% 149.5 (responses=3)  0% 149 (responses=49)  0% 148.5 (responses=3)  0% 148.4 (responses=2)  1% 148 (responses=65)  0% 147.5 (responses=3)  0% 147.3 (responses=1)  1% 147 (responses=76)  0% 146.5 (responses=1)  1% 146 (responses=72)  0% 145.6 (responses=1)  0% 145.5 (responses=3)  0% 145.3 (responses=1)  0% 145.1 (responses=1)  1% 145 (responses=70)  0% 144.6 (responses=1)  0% 144.5 (responses=1)  1% 144 (responses=85)  0% 143.9 (responses=1)  0% 143.8 (responses=1)  0% 143.5 (responses=4)  0% 143.4 (responses=1)  1% 143 (responses=94)  0% 142.5 (responses=2)  0% 142.2 (responses=1)  1% 142 (responses=101)  0% 141.6 (responses=1)  0% 141.5 (responses=1)  1% 141 (responses=107)  0% 140.5 (responses=3)  0% 140.4 (responses=1)  1% 140 (responses=126)  0% 139.6 (responses=1)  0% 139.5 (responses=2)  1% 139 (responses=133)  0% 138.75 (responses=1)  0% 138.7 (responses=1)  0% 138.5 (responses=1)  1% 138 (responses=139)  0% 137.3 (responses=1)  1% 137 (responses=144)  0% 136.8 (responses=2)  0% 136.6 (responses=1)  0% 136.5 (responses=6)  2% 136 (responses=149)  0% 135.6 (responses=1)  0% 135.5 (responses=5)  0% 135.3 (responses=1)  1% 135 (responses=138)  0% 134.5 (responses=1)  2% 134 (responses=193)  0% 133.6 (responses=1)  0% 133.5 (responses=3)  0% 133.2 (responses=1)  1% 133 (responses=121)  0% 132.8 (responses=1)  0% 132.7 (responses=1)  0% 132.6 (responses=1)  0% 132.5 (responses=4)  0% 132.4 (responses=3)  0% 132.2 (responses=1)  2% 132 (responses=187)  0% 131.8 (responses=2)  0% 131.5 (responses=4)  0% 131.2 (responses=1)  2% 131 (responses=166)  0% 130.8 (responses=1)  0% 130.6 (responses=1)  0% 130.5 (responses=2)  0% 130.4 (responses=1)  0% 130.2 (responses=2)  2% 130 (responses=176)  0% 129.9 (responses=1)  0% 129.7 (responses=2)  0% 129.6 (responses=1)  0% 129.2 (responses=2)  1% 129 (responses=147)  0% 128.8 (responses=1)  0% 128.5 (responses=1)  0% 128.4 (responses=1)  0% 128.3 (responses=1)  0% 128.05 (responses=1)  2% 128 (responses=202)  0% 127.6 (responses=2)  0% 127.5 (responses=3)  0% 127.2 (responses=2)  1% 127 (responses=139)  0% 126.5 (responses=6)  2% 126 (responses=222)  0% 125.9 (responses=1)  0% 125.8 (responses=1)  0% 125.6 (responses=2)  0% 125.5 (responses=4)  0% 125.2 (responses=1)  2% 125 (responses=176)  0% 124.7 (responses=1)  0% 124.5 (responses=3)  0% 124.2 (responses=1)  2% 124 (responses=192)  0% 123.75 (responses=1)  0% 123.5 (responses=4)  0% 123.4 (responses=1)  0% 123.2 (responses=1)  3% 123 (responses=278)  0% 122.7 (responses=1)  0% 122.6 (responses=1)  0% 122.5 (responses=3)  0% 122.2 (responses=1)  2% 122 (responses=152)  0% 121.8 (responses=1)  0% 121.5 (responses=3)  0% 121.2 (responses=1)  2% 121 (responses=161)  0% 120.9 (responses=1)  0% 120.75 (responses=1)  0% 120.5 (responses=6)  0% 120.4 (responses=1)  0% 120.2 (responses=1)  3% 120 (responses=305)  0% 119.9 (responses=1)  0% 119.6 (responses=1)  0% 119.5 (responses=6)  0% 119.4 (responses=1)  2% 119 (responses=154)  0% 118.9 (responses=1)  0% 118.6 (responses=1)  0% 118.5 (responses=3)  3% 118 (responses=311)  0% 117.6 (responses=2)  0% 117.56 (responses=1)  0% 117.5 (responses=5)  0% 117.3 (responses=1)  0% 117.25 (responses=1)  1% 117 (responses=143)  0% 116.6 (responses=1)  0% 116.5 (responses=3)  0% 116.3 (responses=1)  2% 116 (responses=161)  0% 115.8 (responses=1)  0% 115.75 (responses=1)  0% 115.6 (responses=1)  0% 115.5 (responses=3)  0% 115.3 (responses=1)  0% 115.2 (responses=1)  2% 115 (responses=168)  0% 114.6 (responses=1)  0% 114.5 (responses=3)  0% 114.4 (responses=2)  2% 114 (responses=197)  0% 113.9 (responses=1)  0% 113.5 (responses=2)  0% 113.4 (responses=1)  0% 113.25 (responses=1)  2% 113 (responses=153)  0% 112.6 (responses=1)  0% 112.5 (responses=2)  0% 112.25 (responses=1)  0% 112.2 (responses=1)  0% 112.01 (responses=1)  2% 112 (responses=150)  0% 111.9 (responses=1)  0% 111.8 (responses=1)  0% 111.5 (responses=6)  0% 111.4 (responses=2)  0% 111.1 (responses=1)  1% 111 (responses=126)  0% 110.8 (responses=1)  0% 110.7 (responses=1)  0% 110.5 (responses=1)  0% 110.4 (responses=1)  1% 110 (responses=121)  0% 109.5 (responses=2)  1% 109 (responses=112)  0% 108.8 (responses=1)  0% 108.7 (responses=1)  0% 108.5 (responses=3)  2% 108 (responses=152)  0% 107.9 (responses=1)  0% 107.8 (responses=1)  0% 107.5 (responses=1)  1% 107 (responses=135)  0% 106.5 (responses=3)  0% 106.4 (responses=1)  1% 106 (responses=111)  0% 105.5 (responses=3)  1% 105 (responses=118)  0% 104.8 (responses=1)  0% 104.6 (responses=1)  0% 104.5 (responses=1)  2% 104 (responses=165)  0% 103.9 (responses=1)  0% 103.7 (responses=1)  0% 103.6 (responses=1)  0% 103.5 (responses=4)  0% 103.2 (responses=1)  1% 103 (responses=118)  0% 102.5 (responses=4)  1% 102 (responses=114)  0% 101.8 (responses=1)  0% 101.6 (responses=1)  1% 101 (responses=112)  0% 100.5 (responses=2)  0% 100.2 (responses=1)  1% 100 (responses=97)  0% 99.9 (responses=1)  0% 99.5 (responses=1)  1% 99 (responses=80)  0% 98.5 (responses=3)  1% 98 (responses=82)  0% 97.8 (responses=3)  0% 97.5 (responses=1)  0% 97.2 (responses=1)  1% 97 (responses=81)  0% 96.5 (responses=1)  0% 96.1 (responses=1)  0% 96.07 (responses=1)  1% 96 (responses=80)  0% 95.6 (responses=2)  1% 95 (responses=50)  0% 94.5 (responses=1)  0% 94.4 (responses=1)  0% 94 (responses=47)  0% 93 (responses=43)  0% 92.5 (responses=1)  1% 92 (responses=55)  0% 91.5 (responses=1)  1% 91 (responses=60)  0% 90.5 (responses=1)  0% 90 (responses=41)  0% 89.7 (responses=1)  0% 89.6 (responses=1)  0% 89.5 (responses=1)  1% 89 (responses=60)  0% 88.9 (responses=1)  0% 88.7 (responses=1)  0% 88.5 (responses=3)  0% 88 (responses=31)  0% 87.5 (responses=3)  0% 87.2 (responses=1)  0% 87 (responses=33)  0% 86.5 (responses=1)  1% 86 (responses=53)  0% 85.5 (responses=1)  0% 85 (responses=25)  0% 84.5 (responses=2)  1% 84 (responses=51)  0% 83.9 (responses=1)  0% 83 (responses=35)  0% 82 (responses=39)  0% 81 (responses=29)  0% 80 (responses=26)  0% 79.6 (responses=1)  0% 79 (responses=12)  0% 78 (responses=24)  0% 77 (responses=20)  0% 76 (responses=19)  0% 75 (responses=22)  0% 74.5 (responses=2)  0% 74 (responses=13)  0% 73.9 (responses=1)  0% 73.6 (responses=1)  0% 73.5 (responses=1)  0% 73 (responses=16)  0% 72 (responses=20)  0% 71.75 (responses=1)  0% 71.7 (responses=1)  0% 71 (responses=15)  0% 70 (responses=13)  0% 69.5 (responses=2)  0% 69 (responses=20)  0% 68.5 (responses=1)  0% 68 (responses=15)  0% 67.2 (responses=1)  0% 67 (responses=15)  0% 66 (responses=16)  0% 65.7 (responses=1)  0% 65 (responses=18)  0% 64.5 (responses=1)  0% 64 (responses=10)  0% 63 (responses=10)  0% 62 (responses=8)  0% 61.5 (responses=1)  0% 61 (responses=2)  0% 60 (responses=6)  0% 59.75 (responses=1)  0% 59 (responses=16)  0% 58 (responses=8)  0% 57 (responses=10)  0% 56 (responses=6)  0% 55 (responses=3)  0% 54 (responses=12)  0% 53 (responses=5)  0% 52 (responses=12)  0% 51 (responses=7)  0% 50 (responses=7)  0% 49.4 (responses=1)  0% 49 (responses=6)  0% 48 (responses=4)  0% 47.14 (responses=1)  0% 47 (responses=3)  0% 46 (responses=6)  0% 45 (responses=5)  0% 44 (responses=4)  0% 43.5 (responses=1)  0% 43 (responses=4)  0% 42 (responses=4)  0% 41 (responses=3)  0% 40 (responses=5)  0% 39.25 (responses=1)  0% 39 (responses=3)  0% 38.8 (responses=1)  0% 38.5 (responses=1)  0% 38 (responses=7)  0% 37.5 (responses=1)  0% 37 (responses=2)  0% 36.5 (responses=1)  0% 36 (responses=9)  0% 35 (responses=5)  0% 34 (responses=7)  0% 33 (responses=7)  0% 32 (responses=5)  0% 31 (responses=6)  0% 30 (responses=4)  0% 29 (responses=5)  0% 28 (responses=7)  0% 27 (responses=3)  0% 26 (responses=11)  0% 25 (responses=1)  0% 24 (responses=4)  0% 23.5 (responses=1)  0% 23 (responses=6)  0% 22.5 (responses=2)  0% 22 (responses=7)  0% 21 (responses=3)  0% 20 (responses=3)  0% 19.2 (responses=1)  0% 19 (responses=2)  0% 18 (responses=2)  0% 17 (responses=2)  0% 16.5 (responses=1)  0% 16.03 (responses=1)  0% 16 (responses=1)  0% 10.224 (responses=1)  0% 0 (responses=7)


Section 4: ADDITIONAL MEDICAL HISTORY

The following questions are about other medical conditions your child might have.

Please report only conditions that have been diagnosed by a qualified health professional.


Section 4, Question 1 - field name: fragile_x_dx

Has |display_name| ever been diagnosed with Fragile X?

Coded ValueResponse
0No
1Yes

100% No (responses=9,913) 0% Yes (responses=47)

Section 4, Question 2 - field name: Tuberous_Sclerosis_dx

Has |display_name| ever been diagnosed with Tuberous Sclerosis?

Coded ValueResponse
0No
1Yes

100% No (responses=9,982) 0% Yes (responses=4)

Section 4, Question 3 - field name: Seizures_Epilepsy_dx

Has |display_name| ever been diagnosed with a Seizure Disorder or Epilepsy?

Febrile seizures during childhood are not considered a seizure disorder.

Coded ValueResponse
0No
1Yes

93% No (responses=9,299) 7% Yes (responses=682)

Section 4, Question 4 - field name: Mental_Retardation_dx

Has |display_name| ever been diagnosed with Mental Retardation?

Coded ValueResponse
0No
1Yes

91% No (responses=9,052) 9% Yes (responses=912)

Section 4, Question 5 - field name: Motor_Delay

Has |display_name| ever been diagnosed with a Motor Delay?

Coded ValueResponse
0No
1Yes

53% No (responses=5,270) 47% Yes (responses=4,607)

Section 4, Question 6 - field name: CP_dx

Has your child ever been diagnosed with Cerebral Palsy (CP)?

Coded ValueResponse
0No
1Yes

97% No (responses=4,331) 3% Yes (responses=148)

Section 4, Question 7 - field name: Depression_dx

Has |display_name| ever been diagnosed with or received treatment for Depression?

Coded ValueResponse
0No
1Yes

92% No (responses=9,206) 8% Yes (responses=780)

Section 4, Question 8 - field name: Bipolar_Disorder

Has |display_name| ever been diagnosed with or received treatment for Bipolar Disorder (Manic/Depressive Disorder)?

Coded ValueResponse
0No
1Yes

96% No (responses=9,596) 4% Yes (responses=391)

Section 4, Question 9 - field name: ADHD_dx

Has |display_name| ever been diagnosed with or received treatment for Attention Deficit/Hyperactivity Disorder (AD/HD) or Attention Deficit Disorder (ADD)?

Coded ValueResponse
0No
1Yes

70% No (responses=6,993) 30% Yes (responses=2,991)

Section 4, Question 10 - field name: Anxiety_Disorder

Has |display_name| ever been diagnosed with or received treatment for an Anxiety Disorder?

Anxiety disorders include panic disorder/panic attacks, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), social anxiety disorder (social phobia), specific phobias, and generalized anxiety disorder (GAD).

Coded ValueResponse
0No
1Yes

80% No (responses=7,992) 20% Yes (responses=1,990)

Section 4, Question 11 - field name: Schizophrenia

Has |display_name| ever been diagnosed with or received treatment for Schizophrenia?

Coded ValueResponse
0No
1Yes

99% No (responses=9,932) 1% Yes (responses=52)


Section 5: EDUCATIONAL HISTORY

The following questions are about the type and extent of schooling your child is receiving.

You should not need any special materials or records to answer these questions.


Section 5, Question 1 - field name: school_type

What type of school (or preschool) does |display_name| attend?

Coded ValueResponse
1Not in school
2Home school
3Public school
4Private school (with regular education classes)
5Specialized private school (for children with special needs)
6Specialized public school (for children with special needs)
-9999Other

55% Public school (responses=5,468) 3% Home school (responses=292) 7% Not in school (responses=669) 4% Private school (with regular education classes) (responses=431) 3% Other (responses=317) 20% Specialized public school (for children with special needs) (responses=2,019) 8% Specialized private school (for children with special needs) (responses=789)

Section 5, Question 2 - field name: school_grade

What is |display_name|'s current grade or level of school?

If in between grades or levels of school, please select the higher grade. For example, if your child just completed 6th grade and will be going into 7th grade, then choose 7th grade.

Coded ValueResponse
1No grade assigned
2Preschool
3Kindergarten
5Grade 1
6Grade 2
7Grade 3
8Grade 4
9Grade 5
10Grade 6
11Grade 7
12Grade 8
13Grade 9
14Grade 10
15Grade 11
16Grade 12
17College undergraduate (freshmen to senior)

7% Grade 3 (responses=662) 8% Grade 2 (responses=768) 5% Grade 5 (responses=484) 6% Grade 4 (responses=591) 27% Preschool (responses=2,492) 6% No grade assigned (responses=564) 10% Grade 1 (responses=892) 11% Kindergarten (responses=1,024) 1% Grade 11 (responses=139) 2% Grade 10 (responses=210) 0% College undergraduate (freshmen to senior) (responses=5) 1% Grade 12 (responses=59) 4% Grade 7 (responses=367) 5% Grade 6 (responses=457) 3% Grade 9 (responses=283) 3% Grade 8 (responses=325)

Section 5, Question 3 - field name: special_ed_pub_schl

Does |display_name| receive any special education services from the public school system?

Coded ValueResponse
0No
1Yes

21% No (responses=2,095) 79% Yes (responses=7,892)

Section 5, Question 4 - field name: special_ed_code_curr

What is |display_name|'s CURRENT special education code?

If your child is receiving special education services, he/she will have one of these special education codes. It may be different than what you consider to be your child's diagnosis.

Coded ValueResponse
1Autism
2Speech or Language Impairment
3Other Health Impairment
4Specific Learning Disability
5Emotional Impairment
6Young Child with Development Delay
7Mulitple Handicaps including Autism
8None
-9999Other

4% Other Health Impairment (responses=307) 2% Specific Learning Disability (responses=140) 73% Autism (responses=5,640) 5% Speech or Language Impairment (responses=425) 1% Emotional Impairment (responses=97) 0% None (responses=36) 4% Other (responses=285) 6% Young Child with Development Delay (responses=488) 4% Mulitple Handicaps including Autism (responses=347)

Section 5, Question 5 - field name: classroom_setting

How would you best describe |display_name|'s classroom setting?

This question is about the classroom setting only and does not try to address opportunities for inclusion. Special education classrooms may include typically developing peers,which is also known as "reverse inclusion."

Coded ValueResponse
1Regular education classroom for ALL of child's school day
2More time in REGULAR EDUCATION classroom than special education classroom
3Same amount of time in regular education and special education classrooms
4More time in SPECIAL EDUCATION classroom than regular education classroom
5Special education classroom for ALL of child's school day

18% More time in 0REGULAR EDUCATION0 classroom than special education classroom (responses=1,712) 23% Regular education classroom for 0ALL0 of child's school day (responses=2,182) 6% Same amount of time in regular education and special education classrooms (responses=605) 36% Special education classroom for 0ALL0 of child's school day (responses=3,368) 16% More time in 0SPECIAL EDUCATION0 classroom than regular education classroom (responses=1,502)

Section 5, Question 6 - field name: has_aide

Does |display_name| have a personal aide or one-on-one assistant in the classroom?

Coded ValueResponse
1Yes, my child has a FULL-TIME aide or assistant
2Yes, my child has a PART-TIME aide or assistant
3No

28% Yes, my child has a 0FULL-TIME0 aide or assistant (responses=2,752) 17% Yes, my child has a 0PART-TIME0 aide or assistant (responses=1,654) 55% No (responses=5,387)

Section 5, Question 7 - field name: classroom_inclusion

Does your child have classroom opportunities for inclusion with typically developing peers?

Coded ValueResponse
0No
1Yes

26% No (responses=2,449) 74% Yes (responses=6,902)


Section 6: FAMILY HISTORY

The following questions are about your child's extended family.

You should not need any special materials or records to answer these questions. Please include family members who are no longer living.


Section 6, Question 1 - field name: a_2nd_Degree_Dx

Does |display_name| have any second-degree relatives (that is aunts and uncles by blood, and grandparents) who have been diagnosed with the following?

Coded ValueResponse
1Autism Spectrum Disorder (ASD)
2Fragile X
3Seizure Disorder or Epilepsy
4Mental Retardation
5Schizophrenia
6Attention Deficit/Hyperactivity Disorder (AD/HD)or Attention Deficit Disorder (ADD)
7Language delays or speech problems

Autism Spectrum Disorder (ASD) (responses=591) Fragile X (responses=39) Seizure Disorder or Epilepsy (responses=836) Mental Retardation (responses=606) Schizophrenia (responses=731) Attention Deficit/Hyperactivity Disorder (AD/HD)or Attention Deficit Disorder (ADD) (responses=2331) Language delays or speech problems (responses=1876)

Section 6, Question 2 - field name: cousin_Dx

Does |display_name| have any first cousins who have been diagnosed with the following?

Coded ValueResponse
1Autism Spectrum Disorder (ASD)
2Fragile X
3Seizure Disorder or Epilepsy
4Mental Retardation
5Schizophrenia
6Attention Deficit/Hyperactivity Disorder (AD/HD)or Attention Deficit Disorder (ADD)
7Language delays or speech problems

Autism Spectrum Disorder (ASD) (responses=907) Fragile X (responses=19) Seizure Disorder or Epilepsy (responses=323) Mental Retardation (responses=327) Schizophrenia (responses=73) Attention Deficit/Hyperactivity Disorder (AD/HD)or Attention Deficit Disorder (ADD) (responses=2337) Language delays or speech problems (responses=2107)


Section 7: PRIOR PARTICIPATION IN AUTISM RESEARCH

The following questions are about your child's prior participation in any ASD-related research studies.

You should not need any special materials or records to answer these questions.


Section 7, Question 1 - field name: prev_research_ASD

Has |display_name| ever been in a RESEARCH STUDY about autism spectrum disorders (prior to this one)?

Coded ValueResponse
0No
1Yes

84% No (responses=8,387) 16% Yes (responses=1,590)

Section 7, Question 2 - field name: previous_research_ASD_genetics

Has |display_name| ever been in a RESEARCH STUDY about the GENETICS of autism spectrum disorders?

Genetics studies will often take a blood test to look at a child's genes or ask questions about the health history of the parents.

Coded ValueResponse
0No
1Yes

55% No (responses=890) 45% Yes (responses=715)

Section 7, Question 3 - field name: previous_study_ASD_meds

Has |display_name| ever been in a RESEARCH STUDY about DRUGS/MEDICATIONS for treating autism spectrum disorder?

Coded ValueResponse
0No
1Yes

92% No (responses=1,478) 8% Yes (responses=130)


Section 8: Summary

Section 8, Question 1 - field name: form_length

What do you think about the length of this form?

Coded ValueResponse
1It was too short and did not ask all of the questions I would have expected.
2It was too long.
3It was just right.

12% It was too short and did not ask all of the questions I would have expected. (responses=1,226) 8% It was too long. (responses=767) 80% It was just right. (responses=7,937)