Sexual Development and Behavior in Children with Autism: The Parent Perspective
If you have more than one child with autism, please complete the survey with one child in mind.
Please tell us about yourself
1) In what year were you born? (YYYY)
2) Your gender: ☐ Male ☐ Female ☐ Transgender or other (please describe) 3) I am: ☐ Single ☐ In a long-term relationship ☐ Cohabiting ☐ Married
☐ Divorced ☐ Widowed
4) Which ethnic categories do you identify with? Choose all that apply:
☐ American Indian or Alaskan Native ☐ Asian ☐ Hispanic
☐ Native Hawaiian or Pacific Islander ☐ White
☐ Multiracial ☐ Black/African American
☐ Prefer not to answer ☐ Other (please indicate): _______
5) Which best describes where you live?
☐ Urban ☐ Suburban ☐ Rural ☐ Other (please indicate):
6) What is the highest degree or level of school that you have completed?
☐ Elementary school ☐ Middle school/junior high ☐ High school diploma or GED
☐ Some college ☐ Associate degree (AA, AS) ☐ Bachelor’s degree (BA, BS)
☐ Master’s degree (MA, MS) ☐ Professional or Doctorate degree (MD, DDS, JD, Ph.D.)
☐ Vocational school
7) What is your household income?
☐ $0 – 19,999
☐ $20,000 – 29,999
☐ $30,000 – 39,999
☐ $40,000 – 49,999
☐ $50,000 – 59,999
☐ $60,000 – 69,999
☐ $70,000 – 79,999
☐ $80,000 – 89,999
☐ $90,000 – 99,999
☐ $100,000 – 119,999
☐ $120,000 – 139,999
☐ $140,000 +
8) In which state do you live?
(Dropdown – include PR, DC)
9) Do you actively participate in an Asperger’s or autism support group or organization for parents?
☐ Yes ☐ No
10) Which of the following religious or non-religious groups do you currently identify with?
☐ Protestant ☐ Catholic ☐ Mormon/LDS ☐ Jewish ☐ Muslim
☐ Buddhist ☐ Hindu ☐ Atheist ☐ Agnostic ☐ Other (please specify)
11) Religiosity (how religious are you)?
☐ Not religious ☐ Low ☐ Moderate ☐ High 12) Where did you learn about this survey?
☐ Email from Support organization (Autism Society, Autism Speaks) ☐ Searching the Internet
☐ Facebook/Twitter ☐ From a friend ☐ Other 13) How comfortable are you with talking about sexuality?
☐ Very uncomfortable
☐ Somewhat uncomfortable
☐ Neutral
☐ Somewhat comfortable
☐ Very comfortable
Please tell us about your child.
Some questions may not be relevant for your child yet, so please answer as best you can.
14) My child’s age:
15) My child’s gender: ☐ Male ☐ Female ☐ Other (please explain) 16) Please select one or more ethnic categories with which your child identifies:
☐ American Indian or Alaskan Native ☐ Asian ☐ Hispanic
☐ Native Hawaiian or Pacific Islander ☐ White
☐ Multiracial ☐ Black/African American
☐ Prefer not to answer ☐ Other (please Indicate): _______
17) My child is:
☐ Single
☐ In a long-term relationship
☐ Cohabiting
☐ Married
☐ Divorced
☐ Widowed
18) Has your child been diagnosed with an Asperger’s or autism by a pediatrician, physician, psychiatrist, or psychologist?
☐ Yes ☐ No
19) Which of the following has your child been diagnosed with? (Choose all that apply)
☐ Autism ☐ Asperger’s syndrome ☐ Pervasive developmental disorder
☐ Atypical autism ☐ Rett’s Disorder ☐ Childhood Disintegrative Disorder
☐ Mental retardation/severe cognitive disability
☐ Other, please explain______
20) My child was first diagnosed with Asperger’s or autism at age: (<1 – 27+)
21) Does your child currently receive or participate in any of the following services? Choose all that apply.
☐ Psychotherapy/Counseling ☐ Vocational training
☐ Occupational therapy ☐ Social skills training
☐ Special needs recreational activities
☐ Other (please specify)
22) Does your child now or have they ever lived in a caretaking facility outside of the home for an extended period of time (e.g., an institution, a group home) where people other than yourself were the primary caregiver for your child?
☐ No ☐ Yes, now ☐ Yes, previously but not now
23) Does your child currently live in your home with you? ☐ No ☐ Yes 24) What kind of school does your child attend?
☐ Public school ☐ Charter school ☐ Other (please describe)
☐ Therapeutic school ☐ Home school
Please tell us about your child’s abilities. We want a more in-depth picture of your child than diagnosis alone provides. Please choose the item that best describes your child, even if one isn’t a perfect fit.
25) Measured IQ
☐ 1. Above average (IQ is 116 or more)
☐ 2. Average (IQ is 86-115)
☐ 3. Slightly below average or borderline (IQ is 71-85)
☐ 4. Below average or mild MR (IQ is 56-70)
☐ 5. Far below average or moderate MR (IQ is 41-55)
☐ 6. Severe MR (IQ is 26-40
☐ 7. Profound MR (IQ below 25)
☐ 8. I don’t know – Skip logic (see next question)
[Skip logic: Many people don’t know their child’s IQ score. Please rate your child’s overall level of cognitive functioning.]
☐ 1. Above average
☐ 2. Average
☐ 3. Slightly below average or borderline
☐ 4. Below average
☐ 5. Far below average
☐ 6. Severely impaired
☐ 7. Profoundly impaired Sexuality Education
26) Have you discussed sexuality education with an IEP (Individualized Education Program) team?
☐ My child does not have an IEP team ☐ No ☐ Yes
27) Have you or another primary caretaker provided sexuality education to your child?
☐ No ☐ No, but will in the future ☐ Yes
28) Has your child participated in a school-based sex education program?
☐ No ☐ No, but will in the future
☐ Yes, I had to sign a form saying that my child could participate (opt-in)
☐ Yes, it’s provided to all students unless parents say no (opt-out)
29) Has your child participated in a community-based sex education program specifically for people with autism?
☐ No ☐ No, but will in the future ☐ No, that is not available ☐ Yes 30) If your child has participated in sex education through school, was it relevant and appropriate for them?
☐ My child has not participated
☐ Not at all ☐ Slightly ☐ Somewhat ☐ Moderately ☐ Very 31) If you or another caretaker has provided sex education to your child, do you think it was effective?
☐ Has not been provided
☐ Not at all ☐ Slightly ☐ Somewhat ☐ Moderately ☐ Very Please tell us about your experiences with sexual development
32) Overall, how prepared are you to manage your child's sexual development and behavior?
☐ Not at all ☐ Slightly ☐ Somewhat ☐ Moderately ☐ Very 33) Parents of youth with autism/Asperger’s have reported a variety of romantic and sexual
behaviors (listed below). Some behaviors are healthy and others may cause problems even though the child doesn’t mean to hurt anyone.
To your knowledge, has your child:
Expressed the desire for a relationship (dating, marriage, family)?
☐ Yes ☐ No ☐ Not sure
Shown or expressed attraction to anyone of the other sex? ☐ Yes ☐ No ☐ Not sure
Shown or expressed attraction to anyone of the same sex? ☐ Yes ☐ No ☐ Not sure
Had a sexual or romantic relationship with anyone of the other sex?
☐ Yes ☐ No ☐ Not sure
Had a sexual or romantic relationship with anyone of the same sex?
☐ Yes ☐ No ☐ Not sure
Had sexual intercourse? ☐ Yes ☐ No ☐
Not sure
Talked about private sexual topics while in public? ☐ Yes ☐ No ☐ Not sure
Intruded on other’s privacy? (e.g., entered rooms without knocking, asked inappropriate questions)
☐ Yes ☐ No ☐ Not sure
Peeked at others? (i.e., purposefully looked at someone bathing or undressing)
☐ Yes ☐ No ☐ Not sure
Undressed in public inappropriately? ☐ Yes ☐ No ☐
Not sure
Masturbated privately in an appropriate setting? ☐ Yes ☐ No ☐ Not sure
Masturbated in the presence of others or in public? ☐ Yes ☐ No ☐ Not sure
Used an object to masturbate? ☐ Yes ☐ No ☐
Not sure Shown attraction to specific sexual parts of other people’s
bodies (e.g., breasts, legs, bottoms)
☐ Yes ☐ No ☐ Not sure
Shown attraction to specific non-sexual parts of other people’s bodies? (e.g., feet, hair)
☐ Yes ☐ No ☐ Not sure
Shown or expressed attraction to inanimate objects? ☐ Yes ☐ No ☐ Not sure
Stared inappropriately at people? ☐ Yes ☐ No ☐
Not sure
Touched people inappropriately in a sexual way? ☐ Yes ☐ No ☐ Not sure
Been sexually abused or assaulted? ☐ Yes ☐ No ☐
Not sure
Sexually abused another person? ☐ Yes ☐ No ☐
Not sure Been arrested or faced legal involvement due to sexual
behavior?
☐ Yes ☐ No ☐ Not sure
Faced consequences at school due to sexual behavior? ☐ Yes ☐ No ☐ Not sure
Been victimized by peers due to lack of knowledge of slang or social behavior (e.g., “go say this,” “kiss her”)
☐ Yes ☐ No ☐ Not sure
Please tell us about your concerns and actions taken
34) Of the following, which actions have you taken to support healthy sexual development and opportunities for relationships, or to address sexuality-related problems that you’ve encountered?
(Choose all that apply)
☐ Spoke with child about sexual development or behavior
☐ Spoke to child’s physician, or nurse
☐ Spoke to psychologist or psychiatrist
☐ Spoke to teacher or school
☐ Spoke with other parents
☐ Searched Internet for info
☐ Read research journals
☐ Provided formal social skills training
☐ Provided condoms/birth control
☐ I have not needed to take action
☐ I don’t know what to do
☐ I will take action later
☐ Other (please explain) or comments welcome
35) What actions have you taken to ensure that your child gets a job and participates in the community?
☐ Provided chores and responsibilities
☐ Talked about their career plans
☐ Talked to them about turning their interests into a career
☐ Talked to them about the financial and psychological importance of having a job
☐ Supported them financially during college
☐ Supported them in taking out loans for college
☐ Enrolled them in class about adult roles and responsibilities
☐ They participated in volunteer work
☐ They participated in job training through school or community
☐ They have/had a job
☐ Enrolled them in a civics class
☐ Talked to them about politics and the importance of voting
