• Adult Autism Spectrum Disorder (ASD) Survey

  • Hello! Thank you so much for being part of this pilot survey on symptoms and life effects of ASD (Autism Spectrum Disorder).

    The purpose of this self-report survey is to shed light on which symptoms of autism have significant negative impact on the lives of adults with ASD, which will hopefully serve to direct the development of educational strategies for children with ASD that focus on long-term life improvement rather than social normalcy.

  • This survey is intended for individuals at least 20 years old who have ASD.

    Please do not complete this survey on someone else's behalf or complete the survey more than once. Both self-diagnosed and professionally diagnosed individuals are welcome to complete this survey.

  • Topics in This Survey

    The survey will ask about demographic information and experience of symptoms. More information will be provided at the top of each section and subsection for clarity.

  • Time to Complete

    The survey is estimated to take 10 minutes to complete, but may take longer as some questions may lead you to reflect on your life experience or consider how to categorize it. Clarifying examples and information have been provided as much as possible to assist in this process.

  • Demographic Information

    This section of the survey will ask about demographic information in order to better identify trends in symptom experience. This section is OPTIONAL, but extremely valuable! If you feel comfortable doing so, please complete this section to the best of your knowledge.
    • Additional Information (click to open) 

    • Self-diagnosed

      This answer indicates that you have personally concluded that you have Autism Spectrum Disorder based on information available to you, but NOT by a health professional. This may be based on some combination of personal experience with others who have an ASD diagnosis, research regarding the symptoms and experience of ASD, suggestions by those close to you that you exhibit symptoms of ASD, etc.

    • Diagnosed by a qualified professional

      This answer indicates that you have received a formal diagnosis from a healthcare professional who is legally and professionally qualified to diagnose ASD: for example, a physician, psychiatrist, psychologist, social worker, or counselor may be certified to diagnose and/or treat Autism Spectrum Disorder.
    • Additional Information 

    • Any anxiety disorder

      Disorders such as generalized anxiety disorder (GAD), panic disorder (panic attacks), or social anxiety disorder that cause persistent and/or dysfunctional feelings of unease.

       

      Any psychotic disorder

      Disorders such as schizophrenia or schizoaffective disorder that affect an individual's perception of reality due to hallucinations/delusions.

       

      Any dissociative disorder

      Disorders such as depersonalization/derealization disorder or disassociative amnesia that cause an individual to feel "outside" of themselves or unrelated to themselves.

       

      Other mood-related disorder(s)

      This includes bipolar disorder (all types), borderline personality disorder (BPD), intermittent explosive disorder, or any other disorder relating to the regulation of moods.

       

  • Please check the box next to any and all treatments you have ever received that targeted symptoms of ASD.

    *Please select "psychiatric medications" if you took any antipsychotics, antidepressants, or stimulant medications, even if they were not prescribed specifically for ASD.
    • Additional Information 

    • Not sure?

      If you aren't sure if the treatment you received targeted ASD (but think it might have), or if it targeted both ASD and another condition, please include it in your answer! (If you took any medications listed under "psychiatric medications," even if they were not prescribed for ASD, please select Psychiatric Medications!)

    • Education-based intervention/accommodation

      Any plan, intervention, or accommodation provided by an educational institution to help an Autistic student navigate the school and/or actively build the Autistic student's skills. This includes IEP or 504 plans, special education (full- or part-time), personal aides, etc.

    • Parent-Implemented Intervention(s) (PII)

      One or more parents purposefully and knowingly implements strategies such as modeling, coaching, and shaping behaviors to build skills affected by ASD (language, social skills, empathy, emotional regulation, etc.). Examples include the Early-Start Denver Model, Floortime therapy, Relationship Development Intervention, play therapy, and/or alternative communication systems such as ASL, picture-based communication, etc.

    • Applied Behavioral Analysis (ABA)

      Full- or part-time behavioral analysis and intervention administered by a professional. ABA may be applied in any environment, including the home, school, or a daycare-like clinic setting.

    • Psychiatric medication(s)

      Any medication administered to treat symptoms of ASD, such as repetitive behaviors, irritability, and/or hyperactivity. Some examples include antipsychotic medications, antidepressant medications, or stimulant medications. (Specifically for this answer, if you took any of these medications, even for reasons unrelated to ASD, please select this answer!)

    • Counseling or therapy

      Any treatment with a licensed counselor or therapist intended to address symptoms of ASD.

    • Something else?

      If you received a different treatment targeting ASD that is not listed here, please select the closest equivalent category. If no category is suitable, you may include it via the "other" option.

  • Now you'll be asked about your symptoms.

    In each category, several symptoms will be shown in a grid format with three columns: "I experience this," "This inhibits my happiness or functioning," and "This improves my happiness or functioning." An example is shown below.
  • Rows

  • You can select multiple columns.

    For example, if you experience symptom 1 and it inhibits your happiness/functioning, you would check columns 1 and 2 in row 1. If you experience symptom 2 and it neither inhibits nor improves your happiness/functioning, you would select only column 1. If you do not experience symptom 3, you would leave the row blank. If you experience symptom 4 and it at some times inhibits your functioning but at other times improves your functioning, you would select all three columns in the row.

  • More information about symptoms is available in the "additional information" dropdown.

  • Rows
    • Additional Information 

    • Discomfort in large spaces

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when you are in spaces that are physically large, regardless of how many people or things are in that space. For example, a conference hall or stadium.

    • Discomfort in crowded spaces

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when you are in spaces that contain many people. For example, a full train car, a house during a large party, or a busy grocery store.

    • Discomfort in open environments

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when you are in spaces that do not contain any obstacles. For example, a park with no trees or bushes or an empty parking lot.
  • Rows
    • Additional Information 

    • Difficulty with daily tasks due to avoiding sensation (perhaps showering, putting shoes on, or brushing teeth)

      Delaying or avoiding tasks necessary to healthy daily life due to discomfort with sensation(s) you must experience to accomplish the task. For example, avoiding showering (meaning that if you could choose with no consequences, you would shower more often) due to discomfort with the sensation of water hitting the body or the sensation of wet hair after the shower.

    • Discomfort with initiating/receiving physical touch

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when you touch someone else (initiating) purposefully or accidentally, or when you are touched (receiving) purposefully or accidentally. This should not consider who you are touching or being touched by; although the level of discomfort may vary depending on your relation to the person, if you regularly experience discomfort initiating/receiving physical touch that is not related to a single person, please indicate that you experience this.

    • Discomfort with others entering your perceived personal space

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when other people (regardless of their relation to you) enter an area that you consider to be your personal space. The reason for their entering your personal space should not be considered; if you regularly experience discomfort when others enter your personal space, please indicate that you experience this.

    • Discomfort with preferred hair or clothes styles due to physical sensations

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when you dress or style your hair in a way that you would like to, but which creates physical sensations that are uncomfortable. This can be discomfort that you have experienced or are purposefully avoiding and therefore have never experienced. For example, keeping your hair short so that it doesn't touch your ears, avoiding wearing makeup due to its sensation on the face, or avoiding wearing certain fabrics because of how they feel on your skin.

    • Discomfort with texture of food or drink

      Discomfort (such as anxiety, physical tension, or hyperawareness) experienced when consuming food or drink that you enjoy the taste of, but has a texture that you dislike.
  • Rows

  • Discomfort or difficulty functioning when routine is interrupted

    Discomfort (such as anxiety, physical tension, or hyperawareness) or difficulty functioning (procrastination, avoidance of required tasks, fatigue, significant emotional response) when an established routine is interrupted. For example, discomfort that occurs when you must shower after work when you would normally shower before work, or when you must eat breakfast at 8:00AM when you would normally eat breakfast at 7:00AM.

  • Discomfort or difficulty functioning when non-routine tasks must be completed

    Discomfort (such as anxiety, physical tension, or hyperawareness) or difficulty functioning (procrastination, avoidance of required tasks, fatigue, significant emotional response) when a task is important and necessary to complete but is not part of an established routine. For example, when you must go to a doctor's appointment.

  • Discomfort with change

    Discomfort (such as anxiety, physical tension, or hyperawareness) experienced as a result of any change, including a change or break in routine, life changes such as moving or graduating school, etc. This change can be voluntary or involuntary, and may be good, bad, or neither. For example, you decide to move to a new apartment, you adopt a new pet, or graduate from high school.
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    • Additional Information 

    • Scripting conversations or social interactions ahead of time

      Deciding and/or rehearsing what you will say to others before you interact with them. For instance, practicing ordering at a restaurant in your head or practicing different greetings out loud.

    • Difficulty connecting with others emotionally

      Feeling frequently "disconnected" from others. This is largely a matter of your own perception, so go with your best judgment!
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    • Additional Information 

    • Belief that others are generally bad or dangerous

      The belief that most people in the world are bad people or are dangerous, and/or the assumption that most people you come in contact with are bad people or are dangerous.

    • Feeling infantilized by others

      The feeling that others treat you like a child or do not treat you as an adult. This does not have to occur with everyone or even most people; if you feel that some people you have encountered treat you like a child or don't treat you like an adult, please indicate that you experience this symptom.
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    • Additional Information 

    • Acute awareness of your environment

      Being extremely observant of your current environment and changes to it, such as noticing the very moment a new person enters the room or immediately noticing the sound of water dripping in another room. This does not have to occur constantly or in all environments; if you experience this on a regular basis, please indicate that you experience this symptom.

    • Difficulty relaxing without specific preferred items

      Finding it hard to release tension, unwind, and relax if you are not in possession of a particular object. For example, feeling uncomfortable all day if you don't have your favorite jacket, or not being able to relax without your good luck charm.
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    • Additional Information 

    • Repetition of particular sounds or phrases (scripting)

      Repeating sounds or phrases that you have heard without the intent to communicate. For example, frequently saying a particular line from your favorite movie out loud to yourself, or singing one line from a song repeatedly. Please note that this does not include repetitions of things like memes or viral videos that are used for communication; for example, if you quote a viral video to your friend in response to something they did or to make them laugh, that is not considered scripting.

    • Toe-walking

      Preferring to walk or run primarily on your toes and balls of your feet (without the heel touching the ground) or finding yourself walking or running primarily on the toes and balls of your feet when you aren't thinking about it.

    • Repetitive physical movements (stereotypy)

      Stereotypy is a movement that is regularly repeated for no apparent reason. You may hear this commonly referred to as a "tic," which is similar in concept but not precisely the same. For example, blinking hard or for longer than usual, or looking at the ceiling every few seconds or minutes. Please note that this should not include self-stimulatory behavior, which is defined below.

    • Self-stimulatory movements/sounds

      Movements or sounds made for no reason other than experiencing the desire to do so. For example, waving hands or arms around, rubbing hands together or on other body parts, rocking or swaying, echoing sounds made in the environment, or talking to yourself. Although these movements may be repeated often, they are distinct from stereotypy (defined above) because they provide desirable sensations that make the behavior enjoyable.
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    • Additional Information 

    • Difficulty articulating your emotions (to yourself, not to others)

      Finding it difficult to put to words how you're feeling if you had to. For example, if you were writing in a journal with no audience other than yourself, having a hard time expressing exactly how you feel with words.
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