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1/29/2014 DataExplorer - IAN Stats http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 1/78 Researcher Code Book Depression History Questionnaire - 1.0.4 (exported at 1/28/2013 6:44:11 AM) Questionnaire Completion History Total completed=4783, AssignedCount=11005, ActiveCount=0, PercentCompleted=43.5% Section 1: History of Depressive Illness When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reported by parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchers better understand the nature and timing of depression in parents of children on the autism spectrum. It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms. Section 1, Question 1 - field name: hx_sad (ItemRefID=2787) Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed? Coded Value Response 0 No 1 Yes Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2788) IAN Stats Home Help Code Book Builder Contact IAN Explore IAN Community Participate in IAN Research

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1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 1/78

Researcher Code Book

Depression History Questionnaire - 1.0.4 (exported at 1/28/2013 6:44:11 AM)

Questionnaire Completion History

Total completed=4783, AssignedCount=11005, ActiveCount=0, PercentCompleted=43.5%

Section 1: History of Depressive Illness

When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reportedby parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchersbetter understand the nature and timing of depression in parents of children on the autism spectrum.

It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms.

Section 1, Question 1 - field name: hx_sad (ItemRefID=2787)

Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed?

Coded Value Response

0 No

1 Yes

Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2788)

IAN Stats Home Help Code Book Builder Contact IAN Explore IAN Community Participate in IAN Research

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 2/78

Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things weregoing in your life?

Coded Value Response

0 No

1 Yes

Section 1, Question 3 - field name: hx_lost_interest (ItemRefID=2789)

Have you ever had a period lasting several days or longer when you lost interest in most things you usually enjoy like work,hobbies, and personal relationships?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_sad != "1" and hx_discouraged != "1" and hx_lost_interest != "1" 2792

Section 1, Question 4 - field name: age_first_felt_dp (ItemRefID=2790)

When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) youlost interest in most things you usually enjoy...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_dp

> patient.age2541

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 3/78

Section 1, Question 5 - field name: hx_see_pro_dp (ItemRefID=2791)

Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouragedabout your life, or c) you lost interest in most things you usually enjoy?

Coded Value Response

0 No

1 Yes

Section 1, Question 6 - field name: dx_dp_pro (ItemRefID=2792)

Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with adepressive component)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "0" or dx_dp_pro = null 2797

Section 1, Question 7 - field name: age_first_dx_dp (ItemRefID=2793)

When you were first diagnosed by a medical or mental health professional with a depressive illness...How old were you?

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 4/78

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_dp

> patient.age2544

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, you

may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 1, Question 8 - field name: type_pro_dp (ItemRefID=2794)

What type of professional first diagnosed you with a depressive illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 1, Question 9 - field name: type_dx_dp_fem (ItemRefID=2795)

(Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 5/78

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender != "F" 2795

Section 1, Question 10 - field name: type_dx_dp_male (ItemRefID=2796)

(Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2796

SkipRule dx_dp_pro = "1" 2801

Section 1, Question 11 - field name: hx_self_dx_dp (ItemRefID=2797)

Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informationalbrochure at the doctor's office, or symptoms listed in a medication advertisement?

Coded Value Response

0 No

1 Yes

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 6/78

Rule Type Severity Expression TargetItemID Message

SkipRule hx_self_dx_dp = "0" or hx_self_dx_dp = null 2801

Section 1, Question 12 - field name: self_dx_type_dp_fem (ItemRefID=2798)

(Females only) Which of the following diagnoses did you give yourself?

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2798

Section 1, Question 13 - field name: self_dx_type_male (ItemRefID=2799)

(Males only) Which of the following diagnoses did you give yourself?

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 7/78

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2799

Section 1, Question 14 - field name: reason_no_pro_dx (ItemRefID=2800)

There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about theircondition. Please tell us why you did not see a medical or mental health professional about your depressive illness. Check all that apply.

(This question refers to reasons for not seeking professional assistance at the time of your self-diagnosis irrespective of any earlier contact with mental health professionals).

Coded Value Response

1 No insurance for mental health issues

2 Not enough money (whether insured or not)

3 No time

4 No energy

5 Other family member in greater need

6 Fear about impact of diagnosis on future health or life insurance eligibility

7 Worry about what other will think of you

8 Inability to find a medical or mental health professional you trust

9 I did see a professional but they did not diagnose depression

10 Other

Section 1, Question 15 - field name: hx_dp_tx (ItemRefID=2801)

Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical ormental health professional, have you ever been treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

1/29/2014 DataExplorer - IAN Stats

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SkipRule hx_dp_tx != "1" 2805

Section 1, Question 16 - field name: type_tx_dp (ItemRefID=2802)

Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply.

Coded Value Response

1 Medication

2 Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc)

3 Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)

4 Group Therapy

5 Marital or Family Therapy

6 Support Group, in person

7 Support Group, online

8 Spiritual practice (such as prayer or meditation)

9 Speaking with a pastor, rabbi, etc.

10 Life-style changes (such as diet or exercise)

11 Self-help books

12 Other

Section 1, Question 17 - field name: current_tx_dp (ItemRefID=2803)

Are you currently being treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 9/78

Section 1, Question 18 - field name: hx_hosp_dp (ItemRefID=2804)

Have you ever been hospitalized due to a depressive illness?

Coded Value Response

0 No

1 Yes

Section 1, Question 19 - field name: hx_thought_hurt_self_dp (ItemRefID=2805)

Have you ever thought about hurting yourself?

Coded Value Response

0 No

1 Yes

Section 1, Question 20 - field name: hx_attempted_hurtself_dp (ItemRefID=2806)

Have you ever attempted to hurt yourself?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro != "1" and hx_self_dx_dp != "1" and hx_dp_tx != "1" 2825

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 10/78

Section 1, Question 21 - field name: hx_pattern_dp (ItemRefID=2807)

Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply.

Coded Value Response

1 I go through long periods of a fairly constant level of depression.

2 There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods.

3 I have had one or more distinct episodes of depression lasting at least 2 weeks.

Section 1, Question 22 - field name: hx_number_dp (ItemRefID=2808)

How many periods of depressive illness do you estimate you have had?

Coded Value Response

1 1

2 2

3 3

4 4 or more

Section 1, Question 23 - field name: coping_asd_freq_dp (ItemRefID=2809)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of yourdepressive illness?

Coded Value Response

1 All my periods of depressive illness were associated with coping with my child's ASD.

2 Some of my periods of depressive illness were associated with coping with my child's ASD.

3 None of my periods of depressive illness were associated with coping with my child's ASD.

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 11/78

Section 1, Question 24 - field name: coping_asd_severity_dp (ItemRefID=2810)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of yourdepressive illness?

Coded Value Response

1 Coping with my child's ASD has made my depressive illness much more severe.

2 Coping with my child's ASD has made my depressive illness somewhat more severe.

3 Coping with my child's ASD has had no effect on the severity of my depressive illness.

Section 1, Question 25 - field name: hx_before_children_dp (ItemRefID=2811)

Did you experience a depressive illness before having any children?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_before_children_dp = "1" 2813

Section 1, Question 26 - field name: before_asdchild_dp (ItemRefID=2812)

Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder(ASD)?

Coded Value Response

0 No

1 Yes

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 12/78

Section 1, Question 27 - field name: first_concern_dp (ItemRefID=2813)

Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an AutismSpectrum Disorder (ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 28 - field name: twelve_month_dp (ItemRefID=2814)

Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD?

Coded Value Response

0 No

1 Yes

Section 1, Question 29 - field name: hx_other_times_dp (ItemRefID=2815)

Did you experience a depressive illness at any of the following times? Check all that apply.

Coded Value Response

1 At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school.

2 When you came to believe that your child might never "grow out of" having autism.

3 When you were unable to obtain services you felt were crucial for your child's progress.

4 When your child reached a crisis point of some kind either at home or school.

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 13/78

Section 2: Information about Specific Episodes of Depressive Illness

Section 2, Question 1 - field name: length_first_dp (ItemRefID=2816)

Think of the very first time in your life you experienced a depressive illness. How long did this episode last?

Coded Value Response

1 Less than 1 month

2 1-3 months

3 4-7 months

4 8-12 months

5 More than 1 year

Section 2, Question 2 - field name: prior_life_event_dp (ItemRefID=2817)

Was there something going on in your life shortly before this first experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 14/78

Section 2, Question 3 - field name: functioning_first_period_dp (ItemRefID=2818)

Which of the following best describes your functioning during this first period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 4 - field name: first_symptoms_dp (ItemRefID=2819)

What type of symptoms did you experience during this first depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

1/29/2014 DataExplorer - IAN Stats

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18 Thoughts about death or suicide

Section 2, Question 5 - field name: first_worst_dp (ItemRefID=2820)

Was this first experience of depressive illness also the worst experience of depressive illness that you have had?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule first_worst_dp != "0" 2825

Section 2, Question 6 - field name: age_worst_dp (ItemRefID=2821)

Think of your worst experience of depressive illness. How old were you when this occurred?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 16/78

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_worst_dp> patient.age

2573You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 2, Question 7 - field name: prior_life_event_worst_dp (ItemRefID=2822)

Was there something going on in your life shortly before this worst experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 8 - field name: functioning_worst_dp (ItemRefID=2823)

Which of the following best describes your functioning during this worst period of depressive illness?

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 17/78

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 9 - field name: type_symptoms_worst_dp (ItemRefID=2824)

What type of symptoms did you experience during this worst depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 18/78

Section 3: History of Manic Illness

Section 3, Question 1 - field name: hx_manic_period (ItemRefID=2825)

Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds gotoo fast. They talk a lot. They are very restless or unable to sit still and they sometimes do things that are unusual for them, such as drivingtoo fast or spending too much money. Have you ever had a period like this lasting several days or longer?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_manic_period = "0" or hx_manic_period = null 2827

Section 3, Question 2 - field name: age_first_felt_manic (ItemRefID=2826)

When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...Howold were you?

Please enter your age in YEARS to the nearest b irthday.

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 19/78

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_manic> patient.age

2578You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have enteredan incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 3 - field name: dx_manic_pro (ItemRefID=2827)

Have you ever been diagnosed by a medical or mental health professional with manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_manic_pro = "0" or dx_manic_pro = null 2832

Section 3, Question 4 - field name: age_first_dx_manic (ItemRefID=2828)

When you were first diagnosed by a medical or mental health professional with manic depression, bipolar disorder, orcyclothymia...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_manic> patient.age

2580You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have enteredan incorrect birthdate when you registered, please contact [email protected]

1/29/2014 DataExplorer - IAN Stats

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Section 3, Question 5 - field name: type_pro_manic (ItemRefID=2829)

What type of professional first diagnosed you with manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 3, Question 6 - field name: type_dx_pro_manic (ItemRefID=2830)

Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Coded Value Response

1 Bipolar Disorder (also known as manic depression)

2 Cyclothymic Disorder

3 Other

Section 3, Question 7 - field name: hx_hosp_manic (ItemRefID=2831)

Have you ever been hospitalized due to manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

0 No

1 Yes

1/29/2014 DataExplorer - IAN Stats

http://dashboard.ianexchange.org/DataExplorer.aspx?FDID=82&DFUG=Y&DNFS=Y&DR=Y&DIRID=Y&DS=Y&DAV=Y&IT=Y 21/78

Section 4: Family History

Section 4, Question 1 - field name: hx_family_dp (ItemRefID=2832)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a depressive illness, such asMajor Depressive Disorder, Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal AffectiveDisorder (SAD)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_dp != "1" 2834

Section 4, Question 2 - field name: hx_bio_rel_dp (ItemRefID=2833)

Which of your biological relatives have been diagnosed with or treated for a depressive illness, such as Major Depressive Disorder,Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal Affective Disorder (SAD)? Check all thatapply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

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Section 4, Question 3 - field name: hx_family_manic (ItemRefID=2834)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as BipolarDisorder (also known as Manic Depression)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_manic != "1" 2836

Section 4, Question 4 - field name: hx_bio_rel_manic (ItemRefID=2835)

Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as ManicDepression)? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

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8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 5 - field name: hx_family_suicide (ItemRefID=2836)

Has anyone in your immediate or extended biological family ever attempted or committed suicide?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_suicide != "1" 2838

Section 4, Question 6 - field name: hx_bio_rel_suicide (ItemRefID=2837)

Which of your biological relatives have attempted or committeed suicide? Check all that apply.

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Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 5: ASD and Life Impact

At some point in the future, IAN will launch extensive social and financial impact questionnaires. In the meantime, we are using this section of the DepressionHistory Questionnaire to begin to understand family stess and its impact. In the next section, we will ask briefly about various aspects of raising a child with anASD.

Section 5, Question 1 - field name: impact_childASD_beh (ItemRefID=2838)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficult behaviors of child with an ASD

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

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4 A great deal

5 Not applicable

Section 5, Question 2 - field name: impact_exhaustion (ItemRefID=2839)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Exhaustion due to a child's unusual sleep patterns (refusal to sleep, waking in the middle of the night, extensive bedtimerituals, etc.)

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 3 - field name: impact_support_difficulty (ItemRefID=2840)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficulty getting therapies, educational programs, or support you believe your child needs

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

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Section 5, Question 4 - field name: impact_disappointment_tx (ItemRefID=2841)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Disappointment when a treatment program did not yield the results you had hoped for

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 5 - field name: impact_problem_reversal (ItemRefID=2842)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Distress when your child experienced a major problem or reversal in progress at school or in some other area of life

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

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Section 5, Question 6 - field name: impact_worry_future (ItemRefID=2843)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Worry about your child's future

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 7 - field name: impact_relationship_partner (ItemRefID=2844)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with spouse or life partner

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

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Section 5, Question 8 - field name: impact_extended_fam (ItemRefID=2845)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with extended family

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 9 - field name: impact_friendship_social (ItemRefID=2846)

What impact, if any, has raising a child with an ASD had on the following:

Friendships and social network

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

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Section 5, Question 10 - field name: impact_career_education (ItemRefID=2847)

What impact, if any, has raising a child with an ASD had on the following:

Your own career or continuing education

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 11 - field name: impact_financial (ItemRefID=2848)

What impact, if any, has raising a child with an ASD had on the following:

Your financial situation

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

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Questionnaire Scoring

This questionnaire has no scoring defined

Additional Response CodesCoded Value Description

-444 Value is not present. (Skipped without filling in an answer)

-555 No proper value is applicable.

-666 Skipped due to form logic

-777 Patient delayed the answer

-888 Not known

-999 Patient was asked but refused to answer

Depression History Questionnaire - 1.0.3 (exported at 1/28/2013 6:44:11 AM)

Section 1: History of Depressive Illness

When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reportedby parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchersbetter understand the nature and timing of depression in parents of children on the autism spectrum.

It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms.

Section 1, Question 1 - field name: hx_sad (ItemRefID=2725)

Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed?

Coded Value Response

0 No

1 Yes

Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2726)

Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things weregoing in your life?

Coded Value Response

0 No

1 Yes

Section 1, Question 3 - field name: hx_lost_interest (ItemRefID=2727)

Have you ever had a period lasting several days or longer when you lost interest in most things you usually enjoy like work,hobbies, and personal relationships?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_sad != "1" and hx_discouraged != "1" and hx_lost_interest != "1" 2730

Section 1, Question 4 - field name: age_first_felt_dp (ItemRefID=2728)

When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) you

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lost interest in most things you usually enjoy...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_dp

> patient.age2541

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 1, Question 5 - field name: hx_see_pro_dp (ItemRefID=2729)

Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouragedabout your life, or c) you lost interest in most things you usually enjoy?

Coded Value Response

0 No

1 Yes

Section 1, Question 6 - field name: dx_dp_pro (ItemRefID=2730)

Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with adepressive component)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "0" or dx_dp_pro = null 2735

Section 1, Question 7 - field name: age_first_dx_dp (ItemRefID=2731)

When you were first diagnosed by a medical or mental health professional with a depressive illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_dp

> patient.age2544

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 1, Question 8 - field name: type_pro_dp (ItemRefID=2732)

What type of professional first diagnosed you with a depressive illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 1, Question 9 - field name: type_dx_dp_fem (ItemRefID=2733)

(Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

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4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender != "F" 2733

Section 1, Question 10 - field name: type_dx_dp_male (ItemRefID=2734)

(Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2734

SkipRule dx_dp_pro = "1" 2739

Section 1, Question 11 - field name: hx_self_dx_dp (ItemRefID=2735)

Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informationalbrochure at the doctor's office, or symptoms listed in a medication advertisement?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_self_dx_dp = "0" or hx_self_dx_dp = null 2739

Section 1, Question 12 - field name: self_dx_type_dp_fem (ItemRefID=2736)

(Females only) Which of the following diagnoses did you give yourself?

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2736

Section 1, Question 13 - field name: self_dx_type_male (ItemRefID=2737)

(Males only) Which of the following diagnoses did you give yourself?

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

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2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2737

Section 1, Question 14 - field name: reason_no_pro_dx (ItemRefID=2738)

There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about theircondition. Please tell us why you did not see a medical or mental health professional about your depressive illness. Check all that apply.

(This question refers to reasons for not seeking professional assistance at the time of your self-diagnosis irrespective of any earlier contact with mental health professionals).

Coded Value Response

1 No insurance for mental health issues

2 Not enough money (whether insured or not)

3 No time

4 No energy

5 Other family member in greater need

6 Fear about impact of diagnosis on future health or life insurance eligibility

7 Worry about what other will think of you

8 Inability to find a medical or mental health professional you trust

9 I did see a professional but they did not diagnose depression

10 Other

Section 1, Question 15 - field name: hx_dp_tx (ItemRefID=2739)

Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical ormental health professional, have you ever been treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_dp_tx != "1" 2743

Section 1, Question 16 - field name: type_tx_dp (ItemRefID=2740)

Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply.

Coded Value Response

1 Medication

2 Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc)

3 Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)

4 Group Therapy

5 Marital or Family Therapy

6 Support Group, in person

7 Support Group, online

8 Spiritual practice (such as prayer or meditation)

9 Speaking with a pastor, rabbi, etc.

10 Life-style changes (such as diet or exercise)

11 Self-help books

12 Other

Section 1, Question 17 - field name: current_tx_dp (ItemRefID=2741)

Are you currently being treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Section 1, Question 18 - field name: hx_hosp_dp (ItemRefID=2742)

Have you ever been hospitalized due to a depressive illness?

Coded Value Response

0 No

1 Yes

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Section 1, Question 19 - field name: hx_thought_hurt_self_dp (ItemRefID=2743)

Have you ever thought about hurting yourself?

Coded Value Response

0 No

1 Yes

Section 1, Question 20 - field name: hx_attempted_hurtself_dp (ItemRefID=2744)

Have you ever attempted to hurt yourself?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro != "1" and hx_self_dx_dp != "1" and hx_dp_tx != "1" 2763

Section 1, Question 21 - field name: hx_pattern_dp (ItemRefID=2745)

Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply.

Coded Value Response

1 I go through long periods of a fairly constant level of depression.

2 There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods.

3 I have had one or more distinct episodes of depression lasting at least 2 weeks.

Section 1, Question 22 - field name: hx_number_dp (ItemRefID=2746)

How many periods of depressive illness do you estimate you have had?

Coded Value Response

1 1

2 2

3 3

4 4 or more

Section 1, Question 23 - field name: coping_asd_freq_dp (ItemRefID=2747)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of yourdepressive illness?

Coded Value Response

1 All my periods of depressive illness were associated with coping with my child's ASD.

2 Some of my periods of depressive illness were associated with coping with my child's ASD.

3 None of my periods of depressive illness were associated with coping with my child's ASD.

Section 1, Question 24 - field name: coping_asd_severity_dp (ItemRefID=2748)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of yourdepressive illness?

Coded Value Response

1 Coping with my child's ASD has made my depressive illness much more severe.

2 Coping with my child's ASD has made my depressive illness somewhat more severe.

3 Coping with my child's ASD has had no effect on the severity of my depressive illness.

Section 1, Question 25 - field name: hx_before_children_dp (ItemRefID=2749)

Did you experience a depressive illness before having any children?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_before_children_dp = "1" 2751

Section 1, Question 26 - field name: before_asdchild_dp (ItemRefID=2750)

Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder(ASD)?

Coded Value Response

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0 No

1 Yes

Section 1, Question 27 - field name: first_concern_dp (ItemRefID=2751)

Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an AutismSpectrum Disorder (ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 28 - field name: twelve_month_dp (ItemRefID=2752)

Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD?

Coded Value Response

0 No

1 Yes

Section 1, Question 29 - field name: hx_other_times_dp (ItemRefID=2753)

Did you experience a depressive illness at any of the following times? Check all that apply.

Coded Value Response

1 At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school.

2 When you came to believe that your child might never "grow out of" having autism.

3 When you were unable to obtain services you felt were crucial for your child's progress.

4 When your child reached a crisis point of some kind either at home or school.

Section 2: Information about Specific Episodes of Depressive Illness

Section 2, Question 1 - field name: length_first_dp (ItemRefID=2754)

Think of the very first time in your life you experienced a depressive illness. How long did this episode last?

Coded Value Response

1 Less than 1 month

2 1-3 months

3 4-7 months

4 8-12 months

5 More than 1 year

Section 2, Question 2 - field name: prior_life_event_dp (ItemRefID=2755)

Was there something going on in your life shortly before this first experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 3 - field name: functioning_first_period_dp (ItemRefID=2756)

Which of the following best describes your functioning during this first period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

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Section 2, Question 4 - field name: first_symptoms_dp (ItemRefID=2757)

What type of symptoms did you experience during this first depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 2, Question 5 - field name: first_worst_dp (ItemRefID=2758)

Was this first experience of depressive illness also the worst experience of depressive illness that you have had?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule first_worst_dp = "1" 2763

Section 2, Question 6 - field name: age_worst_dp (ItemRefID=2759)

Think of your worst experience of depressive illness. How old were you when this occurred?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_worst_dp> patient.age

2573You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 2, Question 7 - field name: prior_life_event_worst_dp (ItemRefID=2760)

Was there something going on in your life shortly before this worst experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 8 - field name: functioning_worst_dp (ItemRefID=2761)

Which of the following best describes your functioning during this worst period of depressive illness?

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Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 9 - field name: type_symptoms_worst_dp (ItemRefID=2762)

What type of symptoms did you experience during this worst depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 3: History of Manic Illness

Section 3, Question 1 - field name: hx_manic_period (ItemRefID=2763)

Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds gotoo fast. They talk a lot. They are very restless or unable to sit still and they sometimes do things that are unusual for them, such as drivingtoo fast or spending too much money. Have you ever had a period like this lasting several days or longer?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_manic_period = "0" or hx_manic_period = null 2765

Section 3, Question 2 - field name: age_first_felt_manic (ItemRefID=2764)

When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...Howold were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_manic

> patient.age2578

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,

you may have entered your age incorrectly. Please double-check your entry. If you think that you may have enteredan incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 3 - field name: dx_manic_pro (ItemRefID=2765)

Have you ever been diagnosed by a medical or mental health professional with manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

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SkipRule dx_manic_pro = "0" or dx_manic_pro = null 2770

Section 3, Question 4 - field name: age_first_dx_manic (ItemRefID=2766)

When you were first diagnosed by a medical or mental health professional with manic depression, bipolar disorder, orcyclothymia...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_manic

> patient.age2580

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered

an incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 5 - field name: type_pro_manic (ItemRefID=2767)

What type of professional first diagnosed you with manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 3, Question 6 - field name: type_dx_pro_manic (ItemRefID=2768)

Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Coded Value Response

1 Bipolar Disorder (also known as manic depression)

2 Cyclothymic Disorder

3 Other

Section 3, Question 7 - field name: hx_hosp_manic (ItemRefID=2769)

Have you ever been hospitalized due to manic depression, bipolar disorder, or cyclothymia?

Coded Value Response

0 No

1 Yes

Section 4: Family History

Section 4, Question 1 - field name: hx_family_dp (ItemRefID=2770)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a depressive illness, such asMajor Depressive Disorder, Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal AffectiveDisorder (SAD)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_dp != "1" 2772

Section 4, Question 2 - field name: hx_bio_rel_dp (ItemRefID=2771)

Which of your biological relatives have been diagnosed with or treated for a depressive illness, such as Major Depressive Disorder,Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal Affective Disorder (SAD)? Check all thatapply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

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7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 3 - field name: hx_family_manic (ItemRefID=2772)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as BipolarDisorder (also known as Manic Depression)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_manic != "1" 2774

Section 4, Question 4 - field name: hx_bio_rel_manic (ItemRefID=2773)

Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as ManicDepression)? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 5 - field name: hx_family_suicide (ItemRefID=2774)

Has anyone in your immediate or extended biological family ever attempted or committed suicide?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_suicide != "1" 2776

Section 4, Question 6 - field name: hx_bio_rel_suicide (ItemRefID=2775)

Which of your biological relatives have attempted or committeed suicide? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

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10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 5: ASD and Life Impact

At some point in the future, IAN will launch extensive social and financial impact questionnaires. In the meantime, we are using this section of the DepressionHistory Questionnaire to begin to understand family stess and its impact. In the next section, we will ask briefly about various aspects of raising a child with anASD.

Section 5, Question 1 - field name: impact_childASD_beh (ItemRefID=2776)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficult behaviors of child with an ASD

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 2 - field name: impact_exhaustion (ItemRefID=2777)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Exhaustion due to a child's unusual sleep patterns (refusal to sleep, waking in the middle of the night, extensive bedtimerituals, etc.)

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 3 - field name: impact_support_difficulty (ItemRefID=2778)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficulty getting therapies, educational programs, or support you believe your child needs

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 4 - field name: impact_disappointment_tx (ItemRefID=2779)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Disappointment when a treatment program did not yield the results you had hoped for

Coded Value Response

1 Not at all

2 A little

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3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 5 - field name: impact_problem_reversal (ItemRefID=2780)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Distress when your child experienced a major problem or reversal in progress at school or in some other area of life

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 6 - field name: impact_worry_future (ItemRefID=2781)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Worry about your child's future

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 7 - field name: impact_relationship_partner (ItemRefID=2782)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with spouse or life partner

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 8 - field name: impact_extended_fam (ItemRefID=2783)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with extended family

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 9 - field name: impact_friendship_social (ItemRefID=2784)

What impact, if any, has raising a child with an ASD had on the following:

Friendships and social network

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

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3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 10 - field name: impact_career_education (ItemRefID=2785)

What impact, if any, has raising a child with an ASD had on the following:

Your own career or continuing education

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 11 - field name: impact_financial (ItemRefID=2786)

What impact, if any, has raising a child with an ASD had on the following:

Your financial situation

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Depression History Questionnaire - 1.0.2 (exported at 1/28/2013 6:44:11 AM)

Section 1: History of Depressive Illness

When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reportedby parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchersbetter understand the nature and timing of depression in parents of children on the autism spectrum.

It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms.

Section 1, Question 1 - field name: hx_sad (ItemRefID=2663)

Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed?

Coded Value Response

0 No

1 Yes

Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2664)

Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things weregoing in your life?

Coded Value Response

0 No

1 Yes

Section 1, Question 3 - field name: hx_lost_interest (ItemRefID=2665)

Have you ever had a period lasting several days or longer when you lost interest in most things you usually enjoy like work,hobbies, and personal relationships?

Coded Value Response

0 No

1 Yes

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Rule Type Severity Expression TargetItemID Message

SkipRule hx_sad != "1" and hx_discouraged != "1" and hx_lost_interest != "1" 2668

Section 1, Question 4 - field name: age_first_felt_dp (ItemRefID=2666)

When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) youlost interest in most things you usually enjoy...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_dp

> patient.age2541

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, you

may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 1, Question 5 - field name: hx_see_pro_dp (ItemRefID=2667)

Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouragedabout your life, or c) you lost interest in most things you usually enjoy?

Coded Value Response

0 No

1 Yes

Section 1, Question 6 - field name: dx_dp_pro (ItemRefID=2668)

Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with adepressive component)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "0" or dx_dp_pro = null 2673

Section 1, Question 7 - field name: age_first_dx_dp (ItemRefID=2669)

When you were first diagnosed by a medical or mental health professional with a depressive illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warning age_first_dx_dp> patient.age

2544

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, you

may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 1, Question 8 - field name: type_pro_dp (ItemRefID=2670)

What type of professional first diagnosed you with a depressive illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 1, Question 9 - field name: type_dx_dp_fem (ItemRefID=2671)

(Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

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Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender != "F" 2671

Section 1, Question 10 - field name: type_dx_dp_male (ItemRefID=2672)

(Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2672

SkipRule dx_dp_pro = "1" 2677

Section 1, Question 11 - field name: hx_self_dx_dp (ItemRefID=2673)

Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informationalbrochure at the doctor's office, or symptoms listed in a medication advertisement?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_self_dx_dp = "0" or hx_self_dx_dp = null 2677

Section 1, Question 12 - field name: self_dx_type_dp_fem (ItemRefID=2674)

(Females only) Which of the following diagnoses did you give yourself?

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2674

Section 1, Question 13 - field name: self_dx_type_male (ItemRefID=2675)

(Males only) Which of the following diagnoses did you give yourself?

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Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2675

Section 1, Question 14 - field name: reason_no_pro_dx (ItemRefID=2676)

There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about theircondition. Please tell us why you did not see a medical or mental health professional about your depressive illness. Check all that apply.

(This question refers to reasons for not seeking professional assistance at the time of your self-diagnosis irrespective of any earlier contact with mental health professionals).

Coded Value Response

1 No insurance for mental health issues

2 Not enough money (whether insured or not)

3 No time

4 No energy

5 Other family member in greater need

6 Fear about impact of diagnosis on future health or life insurance eligibility

7 Worry about what other will think of you

8 Inability to find a medical or mental health professional you trust

9 I did see a professional but they did not diagnose depression

10 Other

Section 1, Question 15 - field name: hx_dp_tx (ItemRefID=2677)

Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical ormental health professional, have you ever been treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_dp_tx != "1" 2681

Section 1, Question 16 - field name: type_tx_dp (ItemRefID=2678)

Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply.

Coded Value Response

1 Medication

2 Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc)

3 Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)

4 Group Therapy

5 Marital or Family Therapy

6 Support Group, in person

7 Support Group, online

8 Spiritual practice (such as prayer or meditation)

9 Speaking with a pastor, rabbi, etc.

10 Life-style changes (such as diet or exercise)

11 Self-help books

12 Other

Section 1, Question 17 - field name: current_tx_dp (ItemRefID=2679)

Are you currently being treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

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Section 1, Question 18 - field name: hx_hosp_dp (ItemRefID=2680)

Have you ever been hospitalized due to a depressive illness?

Coded Value Response

0 No

1 Yes

Section 1, Question 19 - field name: hx_thought_hurt_self_dp (ItemRefID=2681)

Have you ever thought about hurting yourself?

Coded Value Response

0 No

1 Yes

Section 1, Question 20 - field name: hx_attempted_hurtself_dp (ItemRefID=2682)

Have you ever attempted to hurt yourself?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro != "1" or hx_self_dx_dp != "1" 2701

Section 1, Question 21 - field name: hx_pattern_dp (ItemRefID=2683)

Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply.

Coded Value Response

1 I go through long periods of a fairly constant level of depression.

2 There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods.

3 I have had one or more distinct episodes of depression lasting at least 2 weeks.

Section 1, Question 22 - field name: hx_number_dp (ItemRefID=2684)

How many periods of depressive illness do you estimate you have had?

Coded Value Response

1 1

2 2

3 3

4 4 or more

Section 1, Question 23 - field name: coping_asd_freq_dp (ItemRefID=2685)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of yourdepressive illness?

Coded Value Response

1 All my periods of depressive illness were associated with coping with my child's ASD.

2 Some of my periods of depressive illness were associated with coping with my child's ASD.

3 None of my periods of depressive illness were associated with coping with my child's ASD.

Section 1, Question 24 - field name: coping_asd_severity_dp (ItemRefID=2686)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of yourdepressive illness?

Coded Value Response

1 Coping with my child's ASD has made my depressive illness much more severe.

2 Coping with my child's ASD has made my depressive illness somewhat more severe.

3 Coping with my child's ASD has had no effect on the severity of my depressive illness.

Section 1, Question 25 - field name: hx_before_children_dp (ItemRefID=2687)

Did you experience a depressive illness before having any children?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

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SkipRule hx_before_children_dp = "1" 2689

Section 1, Question 26 - field name: before_asdchild_dp (ItemRefID=2688)

Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder(ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 27 - field name: first_concern_dp (ItemRefID=2689)

Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an AutismSpectrum Disorder (ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 28 - field name: twelve_month_dp (ItemRefID=2690)

Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD?

Coded Value Response

0 No

1 Yes

Section 1, Question 29 - field name: hx_other_times_dp (ItemRefID=2691)

Did you experience a depressive illness at any of the following times? Check all that apply.

Coded Value Response

1 At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school.

2 When you came to believe that your child might never "grow out of" having autism.

3 When you were unable to obtain services you felt were crucial for your child's progress.

4 When your child reached a crisis point of some kind either at home or school.

Section 2: Information about Specific Episodes of Depressive Illness

Section 2, Question 1 - field name: length_first_dp (ItemRefID=2692)

Think of the very first time in your life you experienced a depressive illness. How long did this episode last?

Coded Value Response

1 Less than 1 month

2 1-3 months

3 4-7 months

4 8-12 months

5 More than 1 year

Section 2, Question 2 - field name: prior_life_event_dp (ItemRefID=2693)

Was there something going on in your life shortly before this first experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 3 - field name: functioning_first_period_dp (ItemRefID=2694)

Which of the following best describes your functioning during this first period of depressive illness?

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Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 4 - field name: first_symptoms_dp (ItemRefID=2695)

What type of symptoms did you experience during this first depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 2, Question 5 - field name: first_worst_dp (ItemRefID=2696)

Was this first experience of depressive illness also the worst experience of depressive illness that you have had?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule first_worst_dp = "1" 2701

Section 2, Question 6 - field name: age_worst_dp (ItemRefID=2697)

Think of your worst experience of depressive illness. How old were you when this occurred?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_worst_dp> patient.age

2573

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, you

may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 2, Question 7 - field name: prior_life_event_worst_dp (ItemRefID=2698)

Was there something going on in your life shortly before this worst experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

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12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 8 - field name: functioning_worst_dp (ItemRefID=2699)

Which of the following best describes your functioning during this worst period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 9 - field name: type_symptoms_worst_dp (ItemRefID=2700)

What type of symptoms did you experience during this worst depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 3: History of Manic Illness

Section 3, Question 1 - field name: hx_manic_period (ItemRefID=2701)

Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds gotoo fast. They talk a lot. They are very restless or unable to sit still and they sometimes do things that are unusual for them, such as drivingtoo fast or spending too much money. Have you ever had a period like this lasting several days or longer?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_manic_period = "0" or hx_manic_period = null 2708

Section 3, Question 2 - field name: age_first_felt_manic (ItemRefID=2702)

When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...Howold were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_manic> patient.age

2578You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered

an incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 3 - field name: dx_manic_pro (ItemRefID=2703)

Have you ever been diagnosed by a medical or mental health professional with a manic illness?

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Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_manic_pro = "0" or dx_manic_pro = null 2708

Section 3, Question 4 - field name: age_first_dx_manic (ItemRefID=2704)

When you were first diagnosed by a medical or mental health professional with a manic illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_manic> patient.age

2580You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered

an incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 5 - field name: type_pro_manic (ItemRefID=2705)

What type of professional first diagnosed you with a manic illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 3, Question 6 - field name: type_dx_pro_manic (ItemRefID=2706)

Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Coded Value Response

1 Bipolar Disorder (also known as manic depression)

2 Cyclothymic Disorder

3 Other

Section 3, Question 7 - field name: hx_hosp_manic (ItemRefID=2707)

Have you ever been hospitalized due to a manic illness?

Coded Value Response

0 No

1 Yes

Section 4: Family History

Section 4, Question 1 - field name: hx_family_dp (ItemRefID=2708)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a depressive illness, such asMajor Depressive Disorder, Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal AffectiveDisorder (SAD)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_dp != "1" 2710

Section 4, Question 2 - field name: hx_bio_rel_dp (ItemRefID=2709)

Which of your biological relatives have been diagnosed with or treated for a depressive illness, such as Major Depressive Disorder,Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal Affective Disorder (SAD)? Check all thatapply.

Coded Value Response

1 Mother

2 Father

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3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 3 - field name: hx_family_manic (ItemRefID=2710)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as BipolarDisorder (also known as Manic Depression)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_manic != "1" 2712

Section 4, Question 4 - field name: hx_bio_rel_manic (ItemRefID=2711)

Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as ManicDepression)? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 5 - field name: hx_family_suicide (ItemRefID=2712)

Has anyone in your immediate or extended biological family ever attempted or committed suicide?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_suicide != "1" 2714

Section 4, Question 6 - field name: hx_bio_rel_suicide (ItemRefID=2713)

Which of your biological relatives have attempted or committeed suicide? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

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6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 5: ASD and Life Impact

At some point in the future, IAN will launch extensive social and financial impact questionnaires. In the meantime, we are using this section of the DepressionHistory Questionnaire to begin to understand family stess and its impact. In the next section, we will ask briefly about various aspects of raising a child with anASD.

Section 5, Question 1 - field name: impact_childASD_beh (ItemRefID=2714)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficult behaviors of child with an ASD

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 2 - field name: impact_exhaustion (ItemRefID=2715)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Exhaustion due to a child's unusual sleep patterns (refusal to sleep, waking in the middle of the night, extensive bedtimerituals, etc.)

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 3 - field name: impact_support_difficulty (ItemRefID=2716)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficulty getting therapies, educational programs, or support you believe your child needs

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 4 - field name: impact_disappointment_tx (ItemRefID=2717)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Disappointment when a treatment program did not yield the results you had hoped for

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Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 5 - field name: impact_problem_reversal (ItemRefID=2718)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Distress when your child experienced a major problem or reversal in progress at school or in some other area of life

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 6 - field name: impact_worry_future (ItemRefID=2719)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Worry about your child's future

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 7 - field name: impact_relationship_partner (ItemRefID=2720)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with spouse or life partner

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 8 - field name: impact_extended_fam (ItemRefID=2721)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with extended family

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 9 - field name: impact_friendship_social (ItemRefID=2722)

What impact, if any, has raising a child with an ASD had on the following:

Friendships and social network

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Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 10 - field name: impact_career_education (ItemRefID=2723)

What impact, if any, has raising a child with an ASD had on the following:

Your own career or continuing education

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 11 - field name: impact_financial (ItemRefID=2724)

What impact, if any, has raising a child with an ASD had on the following:

Your financial situation

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Depression History Questionnaire - 1.0.1 (exported at 1/28/2013 6:44:11 AM)

Section 1: History of Depressive Illness

When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reportedby parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchersbetter understand the nature and timing of depression in parents of children on the autism spectrum.

It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms.

Section 1, Question 1 - field name: hx_sad (ItemRefID=2601)

Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed?

Coded Value Response

0 No

1 Yes

Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2602)

Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things weregoing in your life?

Coded Value Response

0 No

1 Yes

Section 1, Question 3 - field name: hx_lost_interest (ItemRefID=2603)

Have you ever had a period lasting several days or longer when you lost interest in most things you usually enjoy like work,hobbies, and personal relationships?

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Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_sad != "1" and hx_discouraged != "1" and hx_lost_interest != "1" 2639

Section 1, Question 4 - field name: age_first_felt_dp (ItemRefID=2604)

When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) youlost interest in most things you usually enjoy...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_dp

> patient.age2541

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 1, Question 5 - field name: hx_see_pro_dp (ItemRefID=2605)

Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouragedabout your life, or c) you lost interest in most things you usually enjoy?

Coded Value Response

0 No

1 Yes

Section 1, Question 6 - field name: dx_dp_pro (ItemRefID=2606)

Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with adepressive component)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "0" or dx_dp_pro = null 2611

Section 1, Question 7 - field name: age_first_dx_dp (ItemRefID=2607)

When you were first diagnosed by a medical or mental health professional with a depressive illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_dp> patient.age

2544You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered an

incorrect birthdate when you registered, please contact [email protected]

Section 1, Question 8 - field name: type_pro_dp (ItemRefID=2608)

What type of professional first diagnosed you with a depressive illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

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Section 1, Question 9 - field name: type_dx_dp_fem (ItemRefID=2609)

(Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender != "F" 2609

Section 1, Question 10 - field name: type_dx_dp_male (ItemRefID=2610)

(Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2610

SkipRule dx_dp_pro = "1" 2615

Section 1, Question 11 - field name: hx_self_dx_dp (ItemRefID=2611)

Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informationalbrochure at the doctor's office, or symptoms listed in a medication advertisement?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_self_dx_dp = "0" or hx_self_dx_dp = null 2615

Section 1, Question 12 - field name: self_dx_type_dp_fem (ItemRefID=2612)

(Females only) Which of the following diagnoses did you give yourself?

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

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DisableRule patient.gender = "F" 2612

Section 1, Question 13 - field name: self_dx_type_male (ItemRefID=2613)

(Males only) Which of the following diagnoses did you give yourself?

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

DisableRule patient.gender = "F" 2613

Section 1, Question 14 - field name: reason_no_pro_dx (ItemRefID=2614)

There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about theircondition. Please tell us why you did not see a medical or mental health professional about your depressive illness. Check all that apply.

(This question refers to reasons for not seeking professional assistance at the time of your self-diagnosis irrespective of any earlier contact with mental health professionals).

Coded Value Response

1 No insurance for mental health issues

2 Not enough money (whether insured or not)

3 No time

4 No energy

5 Other family member in greater need

6 Fear about impact of diagnosis on future health or life insurance eligibility

7 Worry about what other will think of you

8 Inability to find a medical or mental health professional you trust

9 I did see a professional but they did not diagnose depression

10 Other

Section 1, Question 15 - field name: hx_dp_tx (ItemRefID=2615)

Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical ormental health professional, have you ever been treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_dp_tx != "1" 2619

Section 1, Question 16 - field name: type_tx_dp (ItemRefID=2616)

Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply.

Coded Value Response

1 Medication

2 Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc)

3 Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)

4 Group Therapy

5 Marital or Family Therapy

6 Support Group, in person

7 Support Group, online

8 Spiritual practice (such as prayer or meditation)

9 Speaking with a pastor, rabbi, etc.

10 Life-style changes (such as diet or exercise)

11 Self-help books

12 Other

Section 1, Question 17 - field name: current_tx_dp (ItemRefID=2617)

Are you currently being treated for depressive symptoms?

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Coded Value Response

0 No

1 Yes

Section 1, Question 18 - field name: hx_hosp_dp (ItemRefID=2618)

Have you ever been hospitalized due to a depressive illness?

Coded Value Response

0 No

1 Yes

Section 1, Question 19 - field name: hx_thought_hurt_self_dp (ItemRefID=2619)

Have you ever thought about hurting yourself?

Coded Value Response

0 No

1 Yes

Section 1, Question 20 - field name: hx_attempted_hurtself_dp (ItemRefID=2620)

Have you ever attempted to hurt yourself?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro != "1" or hx_self_dx_dp != "1" 2639

Section 1, Question 21 - field name: hx_pattern_dp (ItemRefID=2621)

Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply.

Coded Value Response

1 I go through long periods of a fairly constant level of depression.

2 There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods.

3 I have had one or more distinct episodes of depression lasting at least 2 weeks.

Section 1, Question 22 - field name: hx_number_dp (ItemRefID=2622)

How many periods of depressive illness do you estimate you have had?

Coded Value Response

1 1

2 2

3 3

4 4 or more

Section 1, Question 23 - field name: coping_asd_freq_dp (ItemRefID=2623)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of yourdepressive illness?

Coded Value Response

1 All my periods of depressive illness were associated with coping with my child's ASD.

2 Some of my periods of depressive illness were associated with coping with my child's ASD.

3 None of my periods of depressive illness were associated with coping with my child's ASD.

Section 1, Question 24 - field name: coping_asd_severity_dp (ItemRefID=2624)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of yourdepressive illness?

Coded Value Response

1 Coping with my child's ASD has made my depressive illness much more severe.

2 Coping with my child's ASD has made my depressive illness somewhat more severe.

3 Coping with my child's ASD has had no effect on the severity of my depressive illness.

Section 1, Question 25 - field name: hx_before_children_dp (ItemRefID=2625)

Did you experience a depressive illness before having any children?

Coded Value Response

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0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_before_children_dp = "1" 2627

Section 1, Question 26 - field name: before_asdchild_dp (ItemRefID=2626)

Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder(ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 27 - field name: first_concern_dp (ItemRefID=2627)

Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an AutismSpectrum Disorder (ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 28 - field name: twelve_month_dp (ItemRefID=2628)

Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD?

Coded Value Response

0 No

1 Yes

Section 1, Question 29 - field name: hx_other_times_dp (ItemRefID=2629)

Did you experience a depressive illness at any of the following times? Check all that apply.

Coded Value Response

1 At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school.

2 When you came to believe that your child might never "grow out of" having autism.

3 When you were unable to obtain services you felt were crucial for your child's progress.

4 When your child reached a crisis point of some kind either at home or school.

Section 2: Information about Specific Episodes of Depressive Illness

Section 2, Question 1 - field name: length_first_dp (ItemRefID=2630)

Think of the very first time in your life you experienced a depressive illness. How long did this episode last?

Coded Value Response

1 Less than 1 month

2 1-3 months

3 4-7 months

4 8-12 months

5 More than 1 year

Section 2, Question 2 - field name: prior_life_event_dp (ItemRefID=2631)

Was there something going on in your life shortly before this first experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

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Section 2, Question 3 - field name: functioning_first_period_dp (ItemRefID=2632)

Which of the following best describes your functioning during this first period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 4 - field name: first_symptoms_dp (ItemRefID=2633)

What type of symptoms did you experience during this first depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 2, Question 5 - field name: first_worst_dp (ItemRefID=2634)

Was this first experience of depressive illness also the worst experience of depressive illness that you have had?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule first_worst_dp = "1" 2639

Section 2, Question 6 - field name: age_worst_dp (ItemRefID=2635)

Think of your worst experience of depressive illness. How old were you when this occurred?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_worst_dp> patient.age

2573

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, you

may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 2, Question 7 - field name: prior_life_event_worst_dp (ItemRefID=2636)

Was there something going on in your life shortly before this worst experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

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8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 8 - field name: functioning_worst_dp (ItemRefID=2637)

Which of the following best describes your functioning during this worst period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 9 - field name: type_symptoms_worst_dp (ItemRefID=2638)

What type of symptoms did you experience during this worst depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 3: History of Manic Illness

Section 3, Question 1 - field name: hx_manic_period (ItemRefID=2639)

Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds gotoo fast. They talk a lot. They are very restless or unable to sit still and they sometimes do things that are unusual for them, such as drivingtoo fast or spending too much money. Have you ever had a period like this lasting several days or longer?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_manic_period = "0" or hx_manic_period = null 2646

Section 3, Question 2 - field name: age_first_felt_manic (ItemRefID=2640)

When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...Howold were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_manic

> patient.age2578

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered

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an incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 3 - field name: dx_manic_pro (ItemRefID=2641)

Have you ever been diagnosed by a medical or mental health professional with a manic illness?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_manic_pro = "0" or dx_manic_pro = null 2646

Section 3, Question 4 - field name: age_first_dx_manic (ItemRefID=2642)

When you were first diagnosed by a medical or mental health professional with a manic illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warning age_first_dx_manic> patient.age

2580

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,

you may have entered your age incorrectly. Please double-check your entry. If you think that you may have enteredan incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 5 - field name: type_pro_manic (ItemRefID=2643)

What type of professional first diagnosed you with a manic illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 3, Question 6 - field name: type_dx_pro_manic (ItemRefID=2644)

Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Coded Value Response

1 Bipolar Disorder (also known as manic depression)

2 Cyclothymic Disorder

3 Other

Section 3, Question 7 - field name: hx_hosp_manic (ItemRefID=2645)

Have you ever been hospitalized due to a manic illness?

Coded Value Response

0 No

1 Yes

Section 4: Family History

Section 4, Question 1 - field name: hx_family_dp (ItemRefID=2646)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a depressive illness, such asMajor Depressive Disorder, Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal AffectiveDisorder (SAD)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_dp != "1" 2648

Section 4, Question 2 - field name: hx_bio_rel_dp (ItemRefID=2647)

Which of your biological relatives have been diagnosed with or treated for a depressive illness, such as Major Depressive Disorder,Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal Affective Disorder (SAD)? Check all that

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apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 3 - field name: hx_family_manic (ItemRefID=2648)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as BipolarDisorder (also known as Manic Depression)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_manic != "1" 2650

Section 4, Question 4 - field name: hx_bio_rel_manic (ItemRefID=2649)

Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as ManicDepression)? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 5 - field name: hx_family_suicide (ItemRefID=2650)

Has anyone in your immediate or extended biological family ever attempted or committed suicide?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_suicide != "1" 2652

Section 4, Question 6 - field name: hx_bio_rel_suicide (ItemRefID=2651)

Which of your biological relatives have attempted or committeed suicide? Check all that apply.

Coded Value Response

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1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 5: ASD and Life Impact

At some point in the future, IAN will launch extensive social and financial impact questionnaires. In the meantime, we are using this section of the DepressionHistory Questionnaire to begin to understand family stess and its impact. In the next section, we will ask briefly about various aspects of raising a child with anASD.

Section 5, Question 1 - field name: impact_childASD_beh (ItemRefID=2652)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficult behaviors of child with an ASD

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 2 - field name: impact_exhaustion (ItemRefID=2653)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Exhaustion due to a child's unusual sleep patterns (refusal to sleep, waking in the middle of the night, extensive bedtimerituals, etc.)

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 3 - field name: impact_support_difficulty (ItemRefID=2654)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficulty getting therapies, educational programs, or support you believe your child needs

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 4 - field name: impact_disappointment_tx (ItemRefID=2655)

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To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Disappointment when a treatment program did not yield the results you had hoped for

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 5 - field name: impact_problem_reversal (ItemRefID=2656)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Distress when your child experienced a major problem or reversal in progress at school or in some other area of life

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 6 - field name: impact_worry_future (ItemRefID=2657)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Worry about your child's future

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 7 - field name: impact_relationship_partner (ItemRefID=2658)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with spouse or life partner

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 8 - field name: impact_extended_fam (ItemRefID=2659)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with extended family

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

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Section 5, Question 9 - field name: impact_friendship_social (ItemRefID=2660)

What impact, if any, has raising a child with an ASD had on the following:

Friendships and social network

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 10 - field name: impact_career_education (ItemRefID=2661)

What impact, if any, has raising a child with an ASD had on the following:

Your own career or continuing education

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 11 - field name: impact_financial (ItemRefID=2662)

What impact, if any, has raising a child with an ASD had on the following:

Your financial situation

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Depression History Questionnaire - 1.0.0 (exported at 1/28/2013 6:44:11 AM)

Section 1: History of Depressive Illness

When joining IAN, mothers and fathers of children with autism spectrum disorders answer brief medical history questionnaires. The rate of depression reportedby parents answering these questionnaires has been much higher than expected. This in-depth Depression History Questionnaire is meant to help researchersbetter understand the nature and timing of depression in parents of children on the autism spectrum.

It is important for all parents in IAN to complete this questionnaire, reguardless of whether or not they have a history of depressive illness/symptoms.

Section 1, Question 1 - field name: hx_sad (ItemRefID=2537)

Have you ever in your life had a period lasting several days or longer when most of the day you felt sad, empty, or depressed?

Coded Value Response

0 No

1 Yes

Section 1, Question 2 - field name: hx_discouraged (ItemRefID=2538)

Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things weregoing in your life?

Coded Value Response

0 No

1 Yes

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Section 1, Question 3 - field name: hx_lost_interest (ItemRefID=2539)

Have you ever had a period lasting several days or longer when you lost interest in most things you usually enjoy like work,hobbies, and personal relationships?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_sad != "1" and hx_discouraged != "1" and hx_lost_interest != "1" 2577

Section 1, Question 4 - field name: age_first_felt_dp (ItemRefID=2541)

When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) youlost interest in most things you usually enjoy...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_dp

> patient.age2541

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 1, Question 5 - field name: hx_see_pro_dp (ItemRefID=2542)

Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouragedabout your life, or c) you lost interest in most things you usually enjoy?

Coded Value Response

0 No

1 Yes

Section 1, Question 6 - field name: dx_dp_pro (ItemRefID=2543)

Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with adepressive component)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "0" or dx_dp_pro = null 2548

Section 1, Question 7 - field name: age_first_dx_dp (ItemRefID=2544)

When you were first diagnosed by a medical or mental health professional with a depressive illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_dp

> patient.age2544

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 1, Question 8 - field name: type_pro_dp (ItemRefID=2545)

What type of professional first diagnosed you with a depressive illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

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2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Rule Type Severity Expression TargetItemID Message

SkipRule patient.gender != "F" 2547

Section 1, Question 9 - field name: type_dx_dp_fem (ItemRefID=2546)

(Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "1" 2552

SkipRule patient.gender != "M" 2552

Section 1, Question 10 - field name: type_dx_dp_male (ItemRefID=2547)

(Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro = "1" 2552

Section 1, Question 11 - field name: hx_self_dx_dp (ItemRefID=2548)

Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informationalbrochure at the doctor's office, or symptoms listed in a medication advertisement?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_self_dx_dp = "1" 2550

SkipRule hx_self_dx_dp = "0" or hx_self_dx_dp = null 2552

Section 1, Question 12 - field name: self_dx_type_dp_fem (ItemRefID=2549)

(Females only) Which of the following diagnoses did you give yourself?

Note: If you are male, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

3 Postpartum Depression

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4 Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

SkipRule patient.gender = "F" 2552

SkipRule hx_see_pro_dp = "1" 2552

Section 1, Question 13 - field name: self_dx_type_male (ItemRefID=2550)

(Males only) Which of the following diagnoses did you give yourself?

Note: If you are female, you have reached this question in error. Please contact [email protected]

Coded Value Response

1 Major Depressive Disorder

2 Dysthymic Disorder

5 Seasonal Affective Disorder (SAD)

6 Bipolar Disorder (also known as manic depression)

7 Cyclothymic Disorder

8 Not sure, but it was some type of depression

9 Other

Rule Type Severity Expression TargetItemID Message

SkipRule hx_see_pro_dp = "1" 2552

Section 1, Question 14 - field name: reason_no_pro_dx (ItemRefID=2551)

There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about theircondition. Please tell us why you did not see a medical or mental health professional about your depressive illness. Check all that apply.

Coded Value Response

1 No insurance for mental health issues

2 Not enough money (whether insured or not)

3 No time

4 No energy

5 Other family member in greater need

6 Fear about impact of diagnosis on future health or life insurance eligibility

7 Worry about what other will think of you

8 Inability to find a medical or mental health professional you trust

9 Other

Section 1, Question 15 - field name: hx_dp_tx (ItemRefID=2552)

Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical ormental health professional, have you ever been treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_dp_tx != "1" 2556

Section 1, Question 16 - field name: type_tx_dp (ItemRefID=2553)

Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply.

Coded Value Response

1 Medication

2 Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc)

3 Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy)

4 Group Therapy

5 Marital or Family Therapy

6 Support Group, in person

7 Support Group, online

8 Spiritual practice (such as prayer or meditation)

9 Speaking with a pastor, rabbi, etc.

10 Life-style changes (such as diet or exercise)

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11 Self-help books

12 Other

Section 1, Question 17 - field name: current_tx_dp (ItemRefID=2554)

Are you currently being treated for depressive symptoms?

Coded Value Response

0 No

1 Yes

Section 1, Question 18 - field name: hx_hosp_dp (ItemRefID=2555)

Have you ever been hospitalized due to a depressive illness?

Coded Value Response

0 No

1 Yes

Section 1, Question 19 - field name: hx_thought_hurt_self_dp (ItemRefID=2556)

Have you ever thought about hurting yourself?

Coded Value Response

0 No

1 Yes

Section 1, Question 20 - field name: hx_attempted_hurtself_dp (ItemRefID=2557)

Have you ever attempted to hurt yourself?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_dp_pro != "1" or hx_self_dx_dp != "1" 2577

Section 1, Question 21 - field name: hx_pattern_dp (ItemRefID=2558)

Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply.

Coded Value Response

1 I go through long periods of a fairly constant level of depression.

2 There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods.

3 I have had one or more distinct episodes of depression lasting at least 2 weeks.

Section 1, Question 22 - field name: hx_number_dp (ItemRefID=2559)

How many periods of depressive illness do you estimate you have had?

Coded Value Response

1 1

2 2

3 3

4 4 or more

Section 1, Question 23 - field name: coping_asd_freq_dp (ItemRefID=2560)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of yourdepressive illness?

Coded Value Response

1 All my periods of depressive illness were associated with coping with my child's ASD.

2 Some of my periods of depressive illness were associated with coping with my child's ASD.

3 None of my periods of depressive illness were associated with coping with my child's ASD.

Section 1, Question 24 - field name: coping_asd_severity_dp (ItemRefID=2561)

In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of yourdepressive illness?

Coded Value Response

1 Coping with my child's ASD has made my depressive illness much more severe.

2 Coping with my child's ASD has made my depressive illness somewhat more severe.

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3 Coping with my child's ASD has had no effect on the severity of my depressive illness.

Section 1, Question 25 - field name: hx_before_children_dp (ItemRefID=2562)

Did you experience a depressive illness before having any children?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_before_children_dp = "1" 2564

Section 1, Question 26 - field name: before_asdchild_dp (ItemRefID=2563)

Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder(ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 27 - field name: first_concern_dp (ItemRefID=2564)

Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an AutismSpectrum Disorder (ASD)?

Coded Value Response

0 No

1 Yes

Section 1, Question 28 - field name: twelve_month_dp (ItemRefID=2565)

Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD?

Coded Value Response

0 No

1 Yes

Section 1, Question 29 - field name: hx_other_times_dp (ItemRefID=2566)

Did you experience a depressive illness at any of the following times? Check all that apply.

Coded Value Response

1 At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school.

2 When you came to believe that your child might never "grow out of" having autism.

3 When you were unable to obtain services you felt were crucial for your child's progress.

4 When your child reached a crisis point of some kind either at home or school.

Section 2: Information about Specific Episodes of Depressive Illness

Section 2, Question 1 - field name: length_first_dp (ItemRefID=2567)

Think of the very first time in your life you experienced a depressive illness. How long did this episode last?

Coded Value Response

1 Less than 1 month

2 1-3 months

3 4-7 months

4 8-12 months

5 More than 1 year

Section 2, Question 2 - field name: prior_life_event_dp (ItemRefID=2568)

Was there something going on in your life shortly before this first experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

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8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 3 - field name: functioning_first_period_dp (ItemRefID=2570)

Which of the following best describes your functioning during this first period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 4 - field name: first_symptoms_dp (ItemRefID=2571)

What type of symptoms did you experience during this first depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 2, Question 5 - field name: first_worst_dp (ItemRefID=2572)

Was this first experience of depressive illness also the worst experience of depressive illness that you have had?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule first_worst_dp = "1" 2577

Section 2, Question 6 - field name: age_worst_dp (ItemRefID=2573)

Think of your worst experience of depressive illness. How old were you when this occurred?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_worst_dp> patient.age

2573You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday, youmay have entered your age incorrectly. Please double-check your entry. If you think that you may have entered anincorrect birthdate when you registered, please contact [email protected]

Section 2, Question 7 - field name: prior_life_event_worst_dp (ItemRefID=2574)

Was there something going on in your life shortly before this worst experience of depressive illness that you believe contributed to it?Check all that apply.

Coded Value Response

1 Major job or school related stress

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2 Job loss

3 Divorce or end of close relationship

4 Marital or relationship difficulties

5 Abusive relationship

6 Death of a loved one

7 Violent crime (rape, mugging, carjacking, etc.)

8 Illness or injury involving a loved one

9 Illness or injury involving yourself

10 Financial crisis

11 Pregnancy (yours or your partner's)

12 Events related to your child with an Autism Spectrum Disorder

13 Other

Section 2, Question 8 - field name: functioning_worst_dp (ItemRefID=2575)

Which of the following best describes your functioning during this worst period of depressive illness?

Coded Value Response

1 I was so ill that I needed to spend time in an inpatient clinic or hospital.

2 I was barely able to function, but was not hospitalized.

3 I was somewhat able to function.

4 I functioned fairly well.

Section 2, Question 9 - field name: type_symptoms_worst_dp (ItemRefID=2576)

What type of symptoms did you experience during this worst depressive illness? Check all that apply.

Coded Value Response

1 Feeling sad or empty

2 Loss of interest or pleasure in daily activities

3 Weight loss or gain

4 Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems)

5 Frequent crying

6 Fatigue or low energy

7 Feeling worthless or guilty

8 Inability to concentrate, think, or make decisions

9 Low sex drive

10 Feeling isolated from others

11 Digestive problems

12 Restlessness

13 Loss of interest in interaction with others

14 Loss of appetite or eating too much

15 Slowed speech and physical movement

16 Drop in school or work performance

17 Drug or alcohol abuse

18 Thoughts about death or suicide

Section 3: History of Manic Illness

Section 3, Question 1 - field name: hx_manic_period (ItemRefID=2577)

Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds gotoo fast. They talk a lot. They are very restless or unable to sit still and they sometimes do things that are unusual for them, such as drivingtoo fast or spending too much money. Have you ever had a period like this lasting several days or longer?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_manic_period = "0" or hx_manic_period = null 2584

Section 3, Question 2 - field name: age_first_felt_manic (ItemRefID=2578)

When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...Howold were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

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Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_felt_manic> patient.age

2578

You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,

you may have entered your age incorrectly. Please double-check your entry. If you think that you may have enteredan incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 3 - field name: dx_manic_pro (ItemRefID=2579)

Have you ever been diagnosed by a medical or mental health professional with a manic illness?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule dx_manic_pro = "0" or dx_manic_pro = null 2584

Section 3, Question 4 - field name: age_first_dx_manic (ItemRefID=2580)

When you were first diagnosed by a medical or mental health professional with a manic illness...How old were you?

Please enter your age in YEARS to the nearest b irthday.

Coded Value Response

Value User Entered Coded Value

Rule Type Severity Expression TargetItemID Message

ValidationRule Warningage_first_dx_manic> patient.age

2580You have entered an age that is greater than your current age. If you are not rounding up to the nearest birthday,you may have entered your age incorrectly. Please double-check your entry. If you think that you may have entered

an incorrect birthdate when you registered, please contact [email protected]

Section 3, Question 5 - field name: type_pro_manic (ItemRefID=2581)

What type of professional first diagnosed you with a manic illness?

Coded Value Response

1 Physician other than a psychiatrist (family doctor, internist, etc.)

2 Psychiatrist

3 Psychologist

4 Other Therapist or Counselor

5 Other

Section 3, Question 6 - field name: type_dx_pro_manic (ItemRefID=2582)

Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply.

Coded Value Response

1 Bipolar Disorder (also known as manic depression)

2 Cyclothymic Disorder

3 Other

Section 3, Question 7 - field name: hx_hosp_manic (ItemRefID=2583)

Have you ever been hospitalized due to a manic illness?

Coded Value Response

0 No

1 Yes

Section 4: Family History

Section 4, Question 1 - field name: hx_family_dp (ItemRefID=2584)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a depressive illness, such asMajor Depressive Disorder, Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal AffectiveDisorder (SAD)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

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SkipRule hx_family_dp != "1" 2586

Section 4, Question 2 - field name: hx_bio_rel_dp (ItemRefID=2585)

Which of your biological relatives have been diagnosed with or treated for a depressive illness, such as Major Depressive Disorder,Dysthymic Disorder, Postpartum Depression, Premenstrual Dysphoric Disorder, or Seasonal Affective Disorder (SAD)? Check all thatapply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 3 - field name: hx_family_manic (ItemRefID=2586)

Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as BipolarDisorder (also known as Manic Depression)?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_manic != "1" 2588

Section 4, Question 4 - field name: hx_bio_rel_manic (ItemRefID=2587)

Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as ManicDepression)? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 4, Question 5 - field name: hx_family_suicide (ItemRefID=2588)

Has anyone in your immediate or extended biological family ever attempted or committed suicide?

Coded Value Response

0 No

1 Yes

Rule Type Severity Expression TargetItemID Message

SkipRule hx_family_suicide != "1" 2590

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Section 4, Question 6 - field name: hx_bio_rel_suicide (ItemRefID=2589)

Which of your biological relatives have attempted or committeed suicide? Check all that apply.

Coded Value Response

1 Mother

2 Father

3 Brother

4 Sister

5 Son

6 Daughter

7 Maternal grandmother (mother's mother)

8 Maternal grandfather (mother's father)

9 Maternal aunt (mother's sister)

10 Maternal uncle (mother's brother)

11 First cousin on your mother's side

12 Paternal grandmother (father's mother)

13 Paternal grandfather (father's father)

14 Paternal aunt (father's sister)

15 Paternal uncle (father's brother)

16 First cousin on your father's side

17 Other

Section 5: ASD and Life Impact

At some point in the future, IAN will launch extensive social and financial impact questionnaires. In the meantime, we are using this section of the DepressionHistory Questionnaire to begin to understand family stess and its impact. In the next section, we will ask briefly about various aspects of raising a child with anASD.

Section 5, Question 1 - field name: impact_childASD_beh (ItemRefID=2590)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficult behaviors of child with an ASD

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 2 - field name: impact_exhaustion (ItemRefID=2591)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Exhaustion due to a child's unusual sleep patterns (refusal to sleep, waking in the middle of the night, extensive bedtimerituals, etc.)

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 3 - field name: impact_support_difficulty (ItemRefID=2592)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Difficulty getting therapies, educational programs, or support you believe your child needs

Coded Value Response

1 Not at all

2 A little

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3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 4 - field name: impact_disappointment_tx (ItemRefID=2593)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Disappointment when a treatment program did not yield the results you had hoped for

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 5 - field name: impact_problem_reversal (ItemRefID=2594)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Distress when your child experienced a major problem or reversal in progress at school or in some other area of life

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 6 - field name: impact_worry_future (ItemRefID=2595)

To what extent has this possible aspect of raising a child with an ASD had a negative impact on your life?

Worry about your child's future

Coded Value Response

1 Not at all

2 A little

3 A moderate amount

4 A great deal

5 Not applicable

Section 5, Question 7 - field name: impact_relationship_partner (ItemRefID=2596)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with spouse or life partner

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 8 - field name: impact_extended_fam (ItemRefID=2597)

What impact, if any, has raising a child with an ASD had on the following:

Relationship with extended family

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

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3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 9 - field name: impact_friendship_social (ItemRefID=2598)

What impact, if any, has raising a child with an ASD had on the following:

Friendships and social network

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 10 - field name: impact_career_education (ItemRefID=2599)

What impact, if any, has raising a child with an ASD had on the following:

Your own career or continuing education

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact

Section 5, Question 11 - field name: impact_financial (ItemRefID=2600)

What impact, if any, has raising a child with an ASD had on the following:

Your financial situation

Coded Value Response

1 Very positive impact

2 Somewhat positive impact

3 No impact

4 Somewhat negative impact

5 Very negative impact