FAQ

Frequently Asked Questions

Get answers to the most frequently asked questions that we receive from participants and parents!

And Click here for the RAYS Rhode Island resource guide for Children and Families!

And Click here for the RAYS Missouri resource guide for Children and Families!

What is the purpose of this study?

The purpose of this study is to learn more about the development of adolescents and young adults who have been diagnosed with autism spectrum disorder. This includes the challenges and problems that adolescents and young adults might experience over the course of adolescence and young adulthood.

How many visits are there and how long will they be?

This is a longitudinal study which means if you’re eligible, we will ask you to meet with us 4 times over the course of 3 years. The first part of the study consists of two initial parts that can be done in the same visit or split up into multiple sessions.  The first part of the initial assessment will take about 1 hour. After that, we will be able to determine if the study is the right fit for you. If so, you will be asked to complete the second part of the initial assessment. This can be completed the same day or scheduled for another day. The second part takes about 3 hours to complete. In total, your initial visit can range anywhere from 1-4 hours. If you decide to complete both the first and second assessments in person at the same visit, we will provide you with food since you’ll be at our offices for about 4 hours. We are able to conduct all of our assessment remotely via zoom or phone. 

After your initial assessments, we ask that you meet with us once a year for the next 3 years. The 1-year follow-up only has a teen/young adult component (no parent/guardian portion). It will take one hour at most and can be done over the phone/zoom or via a survey link sent to the teen/young adult.  The 2-year follow-up is similar to the initial assessment and includes both a teen/young adult component, as well as a parent/guardian portion. This will take about 3 hours. The 3-year follow-up is similar to the 1-year follow-up and includes only a teen/young adult component.

All of these assessments can be completed from your home via zoom or phone. Please let us know if this is your preference.

 

Do we need to come in-person?

No, you do not need to come in person. You can choose to complete your visits remotely via zoom/phone or in person. We follow strict COVID-19 safety protocols for in person visits. Please contact us for more information at 401-444-1913 (call or text) or email us at RAYS@brown.edu.

 

What am I expected to do when I come to participate?

Teens/young adults will be asked to:

  • Complete interviews and questionnaires about substance use, mental health, sexual experiences, communication with their parents/guardians, and peer influences.
  • Complete computer tasks on a table/I-PAD
  • Complete a recorder family discussion with their parent/guardian.
    • During this conversation, families will discuss everyday issues that occur in homes such as helping around the house as well as your beliefs regarding things like drinking and drug use.
  • Teens/young adults who come in person will be asked to provide a urine sample to check for drug use.
    • We will not share these results with the parent/guardian unless the teen/young adult gives us permission to do so. Parents/guardians will complete some questionnaires about their teen/young adult as well as questions about their communication and house rules. You do not have to answer any questions that make you uncomfortable.

Parents/guardians will complete some questionnaires about their teen/young adult, as well as questionnaires about house rules and their communication with their teen/young adult.

You do not have to answer any questions that make you uncomfortable.

These sessions can be done in-person, by Zoom, or phone.

 

Does my parent/guardian need to be with me when I participate?

Yes, parents/guardians need to be at the assessments since they participate in the study as well. If this is not possible, please contact the RAYS team at 401-444-1913 or RAYS@brown.edu

 

Can I bring a sibling or 2nd parent/guardian along?

Due to COVID-19 restrictions, we ask that only study participants come to our offices (teen/young adult and participating parent/guardian).

 

Who will we meet during the study visits?

During your visits (virtual or in-person), you may meet a few members of our research team! The people you meet during the study will depend on when you’re available to participate. If you’re interested in learning more about our research team, feel free to check out our “Meet the Team” page on our website.

 

Will we be paid for participating?

Yes, teens/young adults and parents/guardians will be paid for their time.

  • Initial Assessment:
    • Teens/young adults will receive $25 for completing the first part of the initial assessment.
    • Teens/young adults and parent/guardians will each receive $150 for completing the second part of the initial assessment.
  • 1-year follow-up:
    • Teens/young adults will receive $30 for completing the assessment
    • No parent/guardian component
  • 2-year follow-up:
    • Teens/young adults will receive $125 for completing the assessment
    • Parents/guardians will receive $75 for completing the assessment
  • 3-year follow-up:
    • Teens/young adults will receive $40 for completing the assessment
    • No parent/guardian component
  • If you come in person for your visits, teen/young adults will complete the ADOS-2 assessment at one of their in-person visits and will receive an additional $25 for completing it.

Teens/young adults who come in person can receive a total of $395. Teens/young adults who complete the study fully remotely can receive a total of $370. Parents/guardian can receive a total of $225. If you do not complete all the measures, you will be compensated based on how much you have completed. For example, if you complete half of the measures, you will receive half of the total amount of money for that appointment.

 

How am I paid for participating?

You will be compensated through an Electronic Amazon gift card or a prepaid Mastercard (called a ClinCard) that works like a debit card. After you complete your first visit with us, you will receive your compensation. If payment is in the form of a Clincard, we will give you your Clincard. You will be given one card for the entire time of your participation in the study (so try not to lose it!). See the above question, “Will we be paid for participating?” for more detailed information on compensation amounts for study visits.

 

Where do I park? Can I take public transportation? What if I don’t have a way to get to your offices?

Our offices have free parking outside of our building. We are located in the Duncan Building of Butler Hospital (see “Visit Us” page for directions). Our address is 700 Butler Drive, Providence, RI 02906. The best lot for you to park is parking Lot C. One of our research assistants will come out to meet you around the time of your visit so that you know where to go.

We welcome families taking public transportation! The best public transportation option (that would take you the closest to our center) would be Route 40 of the RIPTA bus. If you let us know ahead of time that you’ll be taking the bus, we can have a research assistant meet you at the stop. Alternatively, you can use a smartphone to look up GPS routes utilizing public transportation to find the best option for you.

If you do not have access to a vehicle or public transportation, please call or text us at 401-444-1913 or email us at RAYS@brown.edu. We can provide you with transportation.

You can also complete your visits remotely via zoom or phone.

 

Do you evaluate my child’s functioning and/or development?

No, we do not evaluate or “score” your child. We are looking for trends in the challenges, problems, and life experiences that autistic adolescents and young adults face. If you are concerned about your child’s functioning or development, please refer to our “Resources for Children and Families” page on our website.

 

What do you do with the information you get from the study?

Our goal is to learn more about the development of adolescents and young adults who have been diagnosed with autism spectrum disorder. This includes the challenges and problems that adolescents and young adults might experience over the course of adolescence and young adulthood.  We will be delighted to share our results. Since our study takes 3 years to complete, it takes some time before we can determine results of our study and share our findings. If you are interested in learning about our results, please feel free to call or text us at 401-444-1913 or email us at RAYS@brown.edu. We can update you on our progress.

Does my child need to be verbally fluent in order to participate? Can I complete my child’s interviews and questions for them if they are nonverbal?

Unfortunately, teens/young adults must be verbally fluent in order to participate in RAYS. Parents/guardians are unable to complete interviews and surveys for their child.

Who will see my responses?

Only members of the research team will have access to study data. Your participation status will not be shared outside of the RAYS research team.

 

What precautions are you taking to keep my data confidential? 

Your information will be kept confidential and will be used solely for research purposes. None of your personal identifying information (such as your name) will be stored with your responses. Your study data will be identified by an ID number. The link between your name and ID number will be securely stored on a password protected server or in a locked file cabinet. Access to this code will be restricted. All research data will be stored on Brown University’s secure servers.

 

Click here for the RAYS Rhode Island resource guide for Children and Families