Aging with Autism

Research Study

Aging with Autism Consent Form

You are invited to be in a research study about aging with autism. Autism Spectrum Disorder
(ASD) is a lifelong disorder that affects children and adults. Knowledge about the experiences of
individuals aging with ASD is limited. We will conduct approximately five interviews with older
adults living with ASD for a book chapter in Autism Spectrum Disorders: Fifth Edition. The
proposed project seeks to explore the challenges in navigating later life for a person on the
spectrum and to document preferences for how support is delivered in later life.
You were selected as a possible participant because you are an adult on the autism
spectrum/autistic/adult with autism. We ask that you read this form and ask any questions you may
have before agreeing to be in the study. This study is being conducted by Dr. Danielle A. Waldron
and students, Megan Anderson and Jacquelin Sauer, from Stonehill College.

Background Information:

The purpose of this study is to explore experiences of adults aging with ASD. Participation in
this study will take approximately 90 minutes.  If you decide to participate in this study, you will
be asked to respond to interview questions related to your diagnosis with ASD, relationships,
employment, housing and finances, health and wellness, services and supports, if you identify as a
part of a marginalized community and what that means for you—all in context of your aging
experience. You will be compensated with a $100 Amazon gift card for your participation.

Procedures:

If you agree to be in this study, we would ask you to answer interview questions. Before
participating in the study and agreeing to this consent form, we will screen you to ensure you fit our
two main inclusion criteria 1) adult (age 18+ years) and 2) diagnosed with ASD.

Risks of Being in the Study:

If you decide to participate in the interview, risks to you and to your privacy are minimal. Participation is
voluntary, and there will be no consequences for you if you do not wish to participate. You may also stop
participating in the study at any time. You may speak with Dr. Danielle A. Waldron to discuss any
concerns, distress or other issues related to study participation.
This study has the following risks: Questions may elicit stress or difficult memories. Researchers will
provide contact information for local community health services. Payment for any such treatment must be
provided by you, the participant, or your third-party payer, if any, (such as health insurance, Medicare,
etc.)

Compensation

You will receive the following compensation: Participants will receive $100 Amazon Gift Card upon
completion of the interview.

Confidentiality

The records of this study will be kept private. We will not include any information that will make it
possible to identify a participant in Autism Spectrum Disorders: Fifth Edition. This session will be audio
recorded to ensure accuracy and notes will be taken to capture the context of the conversation. Interviews
will be transcribed for accuracy. We will use the transcription service, Otter.ai, provided by Zoom.
Educational Zoom accounts, including Stonehill College’s, offer audio transcription of recordings through
Otter.ai free of charge. If the Zoom transcription does not work, we will upload the .mp4 audio recording
and use the transcription service through the Otter.ai website. Records will be kept in a locked or

password-protected file; only the researchers will have access to the records. Only the research team will
have access to recordings, and they will be erased after transcription.
[Select one of the following, insert the appropriate date and delete the unused option.]
Raw data will be destroyed by: May 2022

Raw data will be retained but all identifying information will be
removed by:

May 2022

Voluntary Nature of the Study.

Your decision whether or not to participate will not affect your current or future relations with
Stonehill College. If you decide to participate, you are free to withdraw at any time without
affecting those relationships. Your reimbursement or class credit will not be altered if you decide to
withdraw.

Contacts and Questions:

The researchers conducting this study are:

Danielle A. Waldron (PI) and students, Megan Anderson
and Jacquelin Sauer.

You may ask any questions you have now. If you have questions later, you may contact them at:

dwaldron@stonehill.edu

(508)565-1087

You will be given a copy of this form to keep for your records.