Community Data Explorer. Depression History Questionnaire (exported at 1/28/2013 6:44:11 AM) Questionnaire Completion History

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1 IAN Stats Home Help Code Book Builder Contact IAN Explore IAN Community Participate in IAN Research Community Data Explorer Select a questionnaire and click the Update Page button Depression History Questionnaire Update Page Depression History Questionnaire (exported at 1/28/2013 6:44:11 AM) Questionnaire Completion History 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 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? Section 1, Question 2

2 Have you ever had a period lasting several days or longer when most of the day you were very discouraged about how things were going in your life? Section 1, Question 3 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? Section 1, Question 4 When you first experienced a period when a) you felt sad, empty, or depressed, b) you felt discouraged about your life, or c) you lost interest in most things you usually enjoy...how old were you? Please enter your age in YEARS to the nearest birthday. Coded Value Response Value User Entered Coded Value

3 Section 1, Question 5 Did you ever see a medical or mental health professional because a) you felt sad, empty or depressed, b) you felt discouraged about your life, or c) you lost interest in most things you usually enjoy? Section 1, Question 6 Have you ever been diagnosed by a medical or mental health professional with a depressive illness (or a mood disorder with a depressive component)? Section 1, Question 7 When you were first diagnosed by a medical or mental health professional with a depressive illness...how old were you?

4 Please enter your age in YEARS to the nearest birthday. Coded Value Response Value User Entered Coded Value Section 1, Question 8 What type of professional first diagnosed you with a depressive illness? Physician other than a psychiatrist (family doctor, internist, etc.) Psychiatrist Psychologist Other Therapist or Counselor Other Section 1, Question 9 (Females only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply. te: If you are male, you have reached this question in error. Please contact ResearchTeam@IANproject.org Major Depressive Disorder Dysthymic Disorder Postpartum Depression Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause Seasonal Affective Disorder (SAD) Bipolar Disorder (also known as manic depression) Cyclothymic Disorder t sure, but it was some type of depression Other

5 Section 1, Question 10 (Males only) Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply. te: If you are female, you have reached this question in error. Please contact ResearchTeam@IANproject.org Major Depressive Disorder Dysthymic Disorder Seasonal Affective Disorder (SAD) Bipolar Disorder (also known as manic depression) Cyclothymic Disorder t sure, but it was some type of depression Other Section 1, Question 11 Have you ever diagnosed yourself with a depressive illness, perhaps through an internet self-assessment tool, an informational brochure at the doctor's office, or symptoms listed in a medication advertisement?

6 Section 1, Question 12 (Females only) Which of the following diagnoses did you give yourself? te: If you are male, you have reached this question in error. Please contact Major Depressive Disorder Dysthymic Disorder Postpartum Depression Depression associated with Premenstrual Syndrome, Premenstrual Dysphoric Disorder, or Menopause Seasonal Affective Disorder (SAD) Bipolar Disorder (also known as manic depression) Cyclothymic Disorder t sure, but it was some type of depression Other Section 1, Question 13 (Males only) Which of the following diagnoses did you give yourself? te: If you are female, you have reached this question in error. Please contact ResearchTeam@IANproject.org Major Depressive Disorder Dysthymic Disorder Seasonal Affective Disorder (SAD) Bipolar Disorder (also known as manic depression) Cyclothymic Disorder t sure, but it was some type of depression Other

7 Section 1, Question 14 There are many reasons that a person coping with a depressive illness may not see a medical or mental health professional about their condition. 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). insurance for mental health issues t enough money (whether insured or not) time energy Other family member in greater need Fear about impact of diagnosis on future health or life insurance eligibility Worry about what other will think of you Inability to find a medical or mental health professional you trust I did see a professional but they did not diagnose depression Other Section 1, Question 15 Treatment for depressive symptoms may include medication and/or therapy. Whether or not you have been diagnosed by a medical or mental health professional, have you ever been treated for depressive symptoms?

8 Section 1, Question 16 Have you used any of the following treatments or techniques to deal with a depressive illness? Check all that apply. Medication Alternative Medicine (herbs, homeopathic remedies, acupuncture, vitamins, etc) Individual Therapy or Counseling (for example, talk therapy or cognitive behavioral therapy) Group Therapy Marital or Family Therapy Support Group, in person Support Group, online Spiritual practice (such as prayer or meditation) Speaking with a pastor, rabbi, etc. Life-style changes (such as diet or exercise) Self-help books Other Section 1, Question 17 Are you currently being treated for depressive symptoms?

9 Section 1, Question 18 Have you ever been hospitalized due to a depressive illness? Section 1, Question 19 Have you ever thought about hurting yourself? Section 1, Question 20 Have you ever attempted to hurt yourself?

10 Section 1, Question 21 Over your lifetime, what pattern has your depressive illness tended to have? Check all that apply. I go through long periods of a fairly constant level of depression. There are times when I have energetic "up" periods, and there are times when I have depressed "down" periods. I have had one or more distinct episodes of depression lasting at least 2 weeks. Section 1, Question 22 How many periods of depressive illness do you estimate you have had? or more Section 1, Question 23 In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the frequency of your depressive illness? All my periods of depressive illness were associated with coping with my child's ASD. Some of my periods of depressive illness were associated with coping with my child's ASD. ne of my periods of depressive illness were associated with coping with my child's ASD.

11 Section 1, Question 24 In your opinion, to what extent has coping with your child's Autism Spectrum Disorder (ASD) contributed to the severity of your depressive illness? Coping with my child's ASD has made my depressive illness much more severe. Coping with my child's ASD has made my depressive illness somewhat more severe. Coping with my child's ASD has had no effect on the severity of my depressive illness. Section 1, Question 25 Did you experience a depressive illness before having any children? Section 1, Question 26 Did you experience a depressive illness before having your child who was later diagnosed with an Autism Spectrum Disorder (ASD)?

12 Section 1, Question 27 Did you experience a depressive illness as you first became concerned about your child who was later diagnosed with an Autism Spectrum Disorder (ASD)? Section 1, Question 28 Did you experience a depressive illness in the twelve months after your child was diagnosed with an ASD? Section 1, Question 29 Did you experience a depressive illness at any of the following times? Check all that apply. At a transition point, such as when your child left elementary school to enter middle school, or left middle school to enter high school. When you came to believe that your child might never "grow out of" having autism. When you were unable to obtain services you felt were crucial for your child's progress. When your child reached a crisis point of some kind either at home or school.

13 Section 2: Information about Specific Episodes of Depressive Illness Section 2, Question 1 Think of the very first time in your life you experienced a depressive illness. How long did this episode last? Less than 1 month 1-3 months 4-7 months 8-12 months More than 1 year Section 2, Question 2 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. Major job or school related stress Job loss Divorce or end of close relationship Marital or relationship difficulties Abusive relationship Death of a loved one Violent crime (rape, mugging, carjacking, etc.) Illness or injury involving a loved one Illness or injury involving yourself Financial crisis Pregnancy (yours or your partner's) Events related to your child with an Autism Spectrum Disorder Other

14 Section 2, Question 3 Which of the following best describes your functioning during this first period of depressive illness? I was so ill that I needed to spend time in an inpatient clinic or hospital. I was barely able to function, but was not hospitalized. I was somewhat able to function. I functioned fairly well. Section 2, Question 4 What type of symptoms did you experience during this first depressive illness? Check all that apply. Feeling sad or empty Loss of interest or pleasure in daily activities Weight loss or gain Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems) Frequent crying Fatigue or low energy Feeling worthless or guilty Inability to concentrate, think, or make decisions Low sex drive Feeling isolated from others Digestive problems Restlessness Loss of interest in interaction with others Loss of appetite or eating too much Slowed speech and physical movement Drop in school or work performance Drug or alcohol abuse

15 Thoughts about death or suicide Section 2, Question 5 Was this first experience of depressive illness also the worst experience of depressive illness that you have had? Section 2, Question 6 Think of your worst experience of depressive illness.â How old were you when this occurred? Please enter your age in YEARS to the nearest birthday. Coded Value Response Value User Entered Coded Value

16 Section 2, Question 7 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. Major job or school related stress Job loss Divorce or end of close relationship Marital or relationship difficulties Abusive relationship Death of a loved one Violent crime (rape, mugging, carjacking, etc.) Illness or injury involving a loved one Illness or injury involving yourself Financial crisis Pregnancy (yours or your partner's) Events related to your child with an Autism Spectrum Disorder Other Section 2, Question 8 Which of the following best describes your functioning during this worst period of depressive illness? I was so ill that I needed to spend time in an inpatient clinic or hospital. I was barely able to function, but was not hospitalized.

17 I was somewhat able to function. I functioned fairly well. Section 2, Question 9 What type of symptoms did you experience during this worst depressive illness? Check all that apply. Feeling sad or empty Loss of interest or pleasure in daily activities Weight loss or gain Sleeping problems (sleeping a great deal or being unable to sleep that is not due to child's sleep problems) Frequent crying Fatigue or low energy Feeling worthless or guilty Inability to concentrate, think, or make decisions Low sex drive Feeling isolated from others Digestive problems Restlessness Loss of interest in interaction with others Loss of appetite or eating too much Slowed speech and physical movement Drop in school or work performance Drug or alcohol abuse Thoughts about death or suicide

18 Section 3: History of Manic Illness Section 3, Question 1 Some people have periods lasting several days or longer when they feel much more excited and full of energy than usual. Their minds go too 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 driving too fast or spending too much money. Have you ever had a period like this lasting several days or longer? Section 3, Question 2 When you first experienced a period of elevated mood, decreased need for sleep, racing thoughts, and intense bursts of activity...how old were you? Please enter your age in YEARS to the nearest birthday. Coded Value Response Value User Entered Coded Value

19 Section 3, Question 3 Have you ever been diagnosed by a medical or mental health professional with manic depression, bipolar disorder, or cyclothymia? Section 3, Question 4 When you were first diagnosed by a medical or mental health professional with manic depression, bipolar disorder, or cyclothymia...how old were you? Please enter your age in YEARS to the nearest birthday. Coded Value Response Value User Entered Coded Value

20 Section 3, Question 5 What type of professional first diagnosed you with manic depression, bipolar disorder, or cyclothymia? Physician other than a psychiatrist (family doctor, internist, etc.) Psychiatrist Psychologist Other Therapist or Counselor Other Section 3, Question 6 Which of the following diagnoses have you received from a medical or mental health professional? Check all that apply. Bipolar Disorder (also known as manic depression) Cyclothymic Disorder Other Section 3, Question 7 Have you ever been hospitalized due to manic depression, bipolar disorder, or cyclothymia? Section 4: Family History

21 Section 4, Question 1 Has anyone in your immediate or extended biological family ever 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)? Section 4, Question 2 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 apply. Mother Father Brother Sister Son Daughter Maternal grandmother (mother's mother) Maternal grandfather (mother's father) Maternal aunt (mother's sister) Maternal uncle (mother's brother) First cousin on your mother's side Paternal grandmother (father's mother) Paternal grandfather (father's father) Paternal aunt (father's sister) Paternal uncle (father's brother) First cousin on your father's side Other

22 Section 4, Question 3 Has anyone in your immediate or extended biological family ever been diagnosed with or treated for a manic illness, such as Bipolar Disorder (also known as Manic Depression)? Section 4, Question 4 Which of your biological relatives have been diagnosed with or treated for a manic illness, such as Biplar Disorder (also known as Manic Depression)? Check all that apply. Mother Father Brother Sister Son Daughter Maternal grandmother (mother's mother) Maternal grandfather (mother's father) Maternal aunt (mother's sister) Maternal uncle (mother's brother)

23 First cousin on your mother's side Paternal grandmother (father's mother) Paternal grandfather (father's father) Paternal aunt (father's sister) Paternal uncle (father's brother) First cousin on your father's side Other Section 4, Question 5 Has anyone in your immediate or extended biological family ever attempted or committed suicide? Section 4, Question 6 Which of your biological relatives have attempted or committeed suicide? Check all that apply. Mother Father Brother Sister Son

24 Daughter Maternal grandmother (mother's mother) Maternal grandfather (mother's father) Maternal aunt (mother's sister) Maternal uncle (mother's brother) First cousin on your mother's side Paternal grandmother (father's mother) Paternal grandfather (father's father) Paternal aunt (father's sister) Paternal uncle (father's brother) First cousin on your father's side 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 Depression History 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 an ASD. Section 5, Question 1 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 t at all A little A moderate amount A great deal t applicable

25 Section 5, Question 2 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 bedtime rituals, etc.) t at all A little A moderate amount A great deal t applicable Section 5, Question 3 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 t at all A little A moderate amount A great deal t applicable

26 Section 5, Question 4 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 t at all A little A moderate amount A great deal t applicable Section 5, Question 5 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 t at all A little A moderate amount A great deal t applicable

27 Section 5, Question 6 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 t at all A little A moderate amount A great deal t applicable Section 5, Question 7 What impact, if any, has raising a child with an ASD had on the following: Relationship with spouse or life partner Very positive impact Somewhat positive impact impact Somewhat negative impact Very negative impact

28 Section 5, Question 8 What impact, if any, has raising a child with an ASD had on the following: Relationship with extended family Very positive impact Somewhat positive impact impact Somewhat negative impact Very negative impact Section 5, Question 9 What impact, if any, has raising a child with an ASD had on the following: Friendships and social network Very positive impact Somewhat positive impact impact Somewhat negative impact Very negative impact

29 Section 5, Question 10 What impact, if any, has raising a child with an ASD had on the following: Your own career or continuing education Very positive impact Somewhat positive impact impact Somewhat negative impact Very negative impact Section 5, Question 11 What impact, if any, has raising a child with an ASD had on the following: Your financial situation Very positive impact Somewhat positive impact impact Somewhat negative impact Very negative impact

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