Autistic Adults and Other Stakeholders Engage Together Lay Conference Summary Report Patient Centered Outcomes Research Institute Engagement Award EAIN#4208

Autistic Adults and other Stakeholders Engage Together Lay Conference Summary Report Patient Centered Outcomes Research Institute Engagement Award EAIN#4208

Background

What: Autistic Adults and other Stakeholders Engage Together (AASET) Year 2 Meeting When & Where: November 10, 2018 at the Renaissance Hotel in Washington, D.C. Objectives of Meeting: 1. Discuss research priorities to address health for autistic adults1 learned through a PCORI Engagement Award. 2. Identify best practices for engaging the autistic adult community in collaborative partnerships and research. 3. Develop an action-oriented plan to address research priorities through collective impact.

Conference Summary

Overview of Meeting This was the second annual meeting for AASET, and it aimed to build engagement between researchers, partner organizations and the autism community to discuss priorities for future research and engaging autistic adults authentically in the research process. We collaborated with the Association of University Centers of Disability (AUCD) to host the meeting the day prior to their annual meeting.

Attendees  80 attendees registered for the meeting, which was our maximum registration. Of the 80 registrants, 64 (80%) attended.  Of the 64 attendees*: o 37% were autistic adults o 24% were family /caregivers/support person of an individual on the spectrum o 41% were academic researchers o 8% were academic affiliates o 22% were representatives of disability organization *Note: Many attendees fell into more than 1 category; percentages don’t add up to 100 because people could select more than one option.

Materials Provided in Advance of the Meeting

Attendees received an email with detailed information about the meeting. Our attendee “Meeting Information and Accessibility Guide” (see Appendix) was provided 1 week before the meeting to assist attendees in understanding what the meeting was about, and what to expect at the meeting.

What role did patients and stakeholders play at the conference, and how did their engagement enhance the experience for all attendees?

1 Please note we are using identity first language in place of person first language. Many prefer identity first language that does not separate their condition (autism) from who they are. Although not all prefer this convention, we are using this at the request of many project partners.

 The meeting was planned, run, and facilitated by the 18 member AASET Community Council and Project Team. A smaller committee participated in setting the meeting goals, agenda, speakers, and planned activities for the meeting, in collaboration with the Project Team.  Priority areas discussed at this meeting emerged from online engagement of over 230 autistic adults and in-person focus group meetings held with 18 autistic stakeholders.  At the meeting, attendees had the opportunity to hear from multiple speakers. Of the 5 sessions attended by the entire audience, 3 sessions were led by autistic members of the project team or Community Council. Each of the 3 Breakout Sessions were led or co-led by autistic Community Council members.  Audience stakeholders had an opportunity to discuss and contribute to the top 10 research priorities at the Breakout Session of their choice: Access to Healthcare, Gender & Health, and Mental Health.  Engaging stakeholders in Year 1 and Year 2 helped us to plan a meeting that met attendee needs. We carefully reviewed the meeting spaces and assessed lighting, sound/noise, ease of access, and availability of quiet spaces for breaks. Our Conference Coordinator and one autistic Community Council member trained the hotel staff to learn about ways to support our autistic attendees. We hired a CART transcription company to meet the needs of individuals who process written language better than auditory (spoken language), and this company had a running transcription for sessions at the bottom of the powerpoint. These accommodations, which were available to all attendees, were essential for a successful meeting.

Key Findings

Speakers Reported on Methods and Approaches Used to Support Engagement for Organizations and Policy Makers

Keynote speaker Paul Shattuck, PhD, provided information about making sure government, funders, and communities are engaged in autism research. Dr. Shattuck reflected on the following key points:  Connection to systems and communities is key to increasing participation in stakeholder-driven approaches;  Understanding the leverage, alignment, and value proposition for stakeholders will help create the best collection of people to ‘move the needle’.  Engagement happens when people feel that they have a role to play, no matter how big or small.

Priority Setting and Engagement Guide Presentations

 The priority areas were supported through audience discussion and questions. Audience members wished to share the priority-setting survey with others, and wanted a copy of the results.  The Engagement Guide was seen as an avenue to facilitate future research collaborations, and was requested in PDF format. This is in the Appendix for use by other researchers.

Evaluation Results

● Attendee evaluation forms were completed by 26 of 64 attendees at the end of the day. An emailed version of the evaluation was also sent as a follow-up. ● A 5-point Likert scale (1-Strongly Disagree, up to 5-Strongly Agree) was used to evaluate meeting (see Appendix for evaluation form). ● Average ratings ranged from 4.60 to 4.87 for speakers and 4.66 to 4.82 for the content. This means that attendees overall Agreed or Strongly Agreed that the speakers met expectations, and that content was valuable and relevant. ● Open-ended responses to the Evaluation form question “What are three things you will do as a result of this meeting” fell into 3 main categories. Responses showed us that attendees were committed to a variety of actions following the meeting: ○ Developing relationships within the autism community, including advocating for inclusion and accessibility to research, telling others about AASET, starting their own initiatives to help individuals on the spectrum, ○ Changing work or practice behaviors to better support autistic adults, including 3

ensuring availability of other means of communication for healthcare providers (e.g. provide visual or non-spoken opportunities for communication); speaking with supervisors about ways to modify environments of care; and educating other healthcare providers about autistic priorities, ○ Ensuring autism research is respectful and accessible, seeking funding related to priorities, exploring quality of life outcomes when considering research outcomes, and creating advisory board positions for autistic adults in research projects. Researchers also expressed an interest in using the provided Engagement Guide (see Appendix).

● What 3 things would you change for future meetings? Responses were primarily about future meetings having more workshops, more speakers, and more time for networking. Several attendees requested a 2-day meeting. Many people wanted to have more autistic speakers. One participant indicated they wanted to see more diversity in the audience and speakers.

Lessons Learned

● Comments indicated that attendees felt ‘safe’. This meant that our meeting space created a welcoming and supportive place to talk about important priorities.

● Time and support is necessary to ensure that all team members running the meeting, including Community Council members, are adequately prepared to assist. Multiple planning sessions, no longer than 40-60 minutes, occurred over the span of 8 months to develop the agenda and meeting materials collaboratively. Allowing enough time for discussion and input was important.

● While the desire for improved mental health, quality of life, and overall wellbeing are frequently discussed at the individual-level, there also is a need to focus on system-level change that needs to occur in healthcare environments (e.g. physical and sensory environments), and with healthcare provider education.

Areas for Improvement

 Diversity of the attendees was limited, and is an area for improvement.  The day was long, and therefore it was suggested that the next meeting take place across two shorter days.  More opportunities to meet others and connect on a personal level was desired.

Plans to Share Results Products to be shared with Sharing results can be helped by: Ways this information can be used: the community:

● Meeting Agenda & ● Social media outlets ● To educate researchers Accessibility Guide (Facebook and Twitter) about autism community ● Short Summary of ● Word of mouth priorities Year 2 Meeting ● Feedback from community ● To expand what we know ● Engagement & ● Sharing on project website, through additional meetings Compensation Guide PCORI’s website to involve more people ● Share with organizational around the country partners ● To develop a compensation ● Share with researchers plan to describe guidelines through peer-reviewed for payment of autistic adults publication in research ● To develop standards for trust and reciprocal relationships for members of research teams

Appendix AASET Year 2 Meeting Agenda Materials Provided at the Meeting:  AASET Meeting Information and Accessibility Guide  AASET Engagement & Compensation Guide

Evaluation Tools: AASET Year 2 Meeting Evaluation Form

AGENDA 10 November 2018 Renaissance DC Hotel Washington, DC Autistic Adults and other Stakeholders Engage Together

We envision a world in which autistic adults have access to appropriate healthcare to support positive health outcomes.

9:00 – 9:15 am Opening Remarks Renaissance West A Stephen Shore, Alex Plank and Teal Benevides 9:15 – 10:00 am Keynote Renaissance West A Paul Shattuck – Engaging Key Stakeholders in Autism Research 10:00 – 10:15 am Refreshment Break Renaissance West B 10:15 – 10:45 am Priority Setting Results Renaissance West A 10:45 – 11:15 am Engagement Guide Presentation and Discussion Renaissance West A 11:15 – 11:45 am Twitter Chat with Alex Plank Renaissance West A 11:45 – 12:45 pm Lunch (catered) Renaissance West B 12:45 – 1:45 pm Panel Discussion Renaissance West A Judy Endow, Katherine Gotham, Matt Lerner and Alicia Thomas Topic: Priority Setting and Engagement with Autistic Adults in Research 1:45 – 2:00 pm Transfer to Breakout/Working Groups 2:00 – 3:00 pm Breakout/Working Groups • Gender & Health (encompassing not just female health, but gender non-conforming and male health topics) Meeting Room 1 • Mental Health (encompassing desired interventions and outcomes that would be addressed in adulthood) Renaissance West A • Access to Healthcare (encompassing provider communication, system changes, health coverage) Meeting Room 2 3:00 – 3:15 pm Refreshment Break Renaissance West B 3:15 – 3:45 am Breakout Group Reporting Renaissance West A 3:45 – 4:00 pm Wrap Up Renaissance West A

This meeting is funded through a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award Initiative (EAIN-4208). The content does not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

[email protected] • www.autistichealth.org • www.facebook.com/autistichealth

Autistic Adults and other Stakeholders Engage Together

Meeting and Accessibility Guide

Annual Meeting November 10, 2018 Washington, D.C.

Compiled and Edited by Patty Duncan, Lindsey Nebeker, and Teal Benevides. Attributions to Liz Pellicano and Peter Beresford for their original work, cited below. 2

Purpose of AASET: This group of autistic adults, researchers and other stakeholders aims to: 1. Comprehensively prioritize the specific positive health and healthcare outcomes desired by autistic adults; 2. Identify evidence-based interventions and best practices desired by autistic adults; and 3. Engage other stakeholders in collectively implementing the prioritized interventions through a patient-centered outcomes research/comparative effectiveness research.

Stay Connected with AASET: On the Web: www.autistichealth.org On Facebook: www.facebook.com/autistichealth On Twitter: @autistic_health

Funding: This meeting, the Project Team, and support for the AASET Community Council members was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN# 4208). The views presented in this document are solely the responsibility of the AASET Project Team and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

Identity-first versus Person-first Language: Please note we are using identity first language in place of person first language. In our work with stakeholders, specifically autistic self-advocates, many prefer identity first language that does not separate their condition (autism) from who they are. This is an acceptable convention that self advocates use in print descriptions.

AASET Meeting Objectives

At the conclusion of this meeting, attendees will: 1. Discuss research priorities to address health for autistic adults learned through a PCORI Engagement Award.

2. Identify best practices for engaging the autistic adult community in collaborative partnerships and research.

3. Develop an action-oriented plan to address research priorities through collective impact.

Important Meeting Information

AASET Meeting Location:

Renaissance Washington, DC Downtown Hotel 999 Ninth Street NW, Washington, District of Columbia 20001

AASET Meeting Registration – Ballroom Level The Ballroom Level is two (2) levels down from the lobby level. Upon entering the floor there will be signs on hand to guide you toward the AASET Registration table for the meeting.

Start and End times of the AASET Meeting:

We will open Registration at 8:00am ET. Light breakfast (pastries, coffee, tea) will be available prior to the start of the meeting, which is at 9:00am. We will end the meeting around 4:00pm.

Dress/Attire for the AASET Meeting:

Attendees are encouraged to wear comfortable clothing and shoes. This might range from casual to business casual. We do not expect people to wear suits or ties.

The speakers and AASET team will likely be wearing business casual, which is slacks and/or skirt with a sweater or shirt.

What to Bring to the AASET Meeting:

You are encouraged to bring paper and pen if you would like to write notes. Alternatively, you may bring a laptop, but we have been told that wireless internet access in the venue is limited. We will provide a printed agenda when you register.

If you like to meet and connect with new people, we encourage you to bring business cards. Accessibility Guide*

This Meeting is Autistic Space Autistic adults are the intended audience. We have made efforts within the limits of our knowledge and resources to ensure that autistic attendees are welcomed and supported. Our autistic Project Team and Community Council have reviewed this Guide and provided input. We request that all attendees attending the meeting read these notes to ensure that they do not inadvertently cause discomfort to other people.

● During large group sessions, please display your name badge so that everyone can identify who you are.

● Respect and value that everyone is different and will think differently about things.

● Respect each other's personal space. Be polite, including to those not present, and avoid criticizing or speaking negatively about people. Try your best to focus your comments on the issue, not the person.

● Listen. Do not interrupt when another person is speaking.

● At the end of each session, there will be a chance for attendees to ask questions.

● During a panel discussion, raise your hand to indicate you want to speak. Wait to be called on by the Panel Presenters or Discussion Leaders before you start speaking.

● In a small group discussion, you can raise your hand or gesture to the Facilitator to indicate you would like to speak.

● Use plain and simple English. Avoid acronyms and abbreviations. 4

● Talk slowly and try not to talk for too long. Remember that other people are waiting for their turn to speak.

● If you do not understand what someone is saying, please ask them to repeat it or explain it. Chances are you are probably not the only person who does not understand.

● Try to keep the meetings to the agreed times.

● Try to arrive at the meetings on time, and please remember to switch off cell phones or place them on silent mode.

● It is acceptable to leave the room if you want to for any reason. You are not pressured to stay if you feel at all uncomfortable or if you need to take a break.

* The Accessibility Guide was adapted from ESRC Shaping Autism Research Seminars with permission of Liz Pellicano. Information about this U.K. project can be found at: http://www.shapingautismresearch.co.uk/. Their accessibility guide was derived from Shaping Our Lives1, a think tank for service users and disabled people, chaired by Peter Beresford.

Interaction with Others

● Interaction badges will be available for all attendees, if desired. ● These badges include three color-coded interaction messages to communicate to others the desired level and mode of interaction. These are:

No initiation Red Please do not initiate any interaction with me. Prior Please do not initiate unless I have already given you Yellow Permission permission to approach me on a yellow badge.

I have difficulty initiating conversation. Please Please initiate Green initiate.

People might give you prior permission at any time, and this can include instructions about what to do when they are on a red badge.

Sensory Differences

We accept and understand sensory differences! Here are recommendations for attendees:

● Please do not remark on attendees who may be wearing tinted glasses, ear- plugs, headphones, or any other aids.

● Instead of clapping, we ask that attendees in the audience wave their hands in appreciation, using the American Sign Language sign for ‘applause’.

● If you forget and accidentally clap please don't feel embarrassed -- reducing the overall impact of a room full of people clapping will still have been achieved.

● Please also avoid perfumes and aftershaves as this can impact on the comfort of other attendees. Lightly scented deodorants and soaps are acceptable.

Autistic Behavior

Stimming (repetitive movements), echolalia, distractibility, different conversation skills, avoidance of eye contact, perseveration (obsessiveness), are accepted. Please try to bear in mind the need for presenters and other attendees to be heard. Additionally, the need to have additional time for processing, including time to respond to questions, may be necessary.

Food Service

We will be providing light pastries and coffee/tea upon registration between 8-9am. We also will provide two refreshment breaks (mid-morning and mid-afternoon), and a catered (box) lunch. Upon registration online, registrants were asked if they had any particular dietary requests. Dietary requests made after registration on Oct 20th may not be able to be accommodated.

People will stand in line to pick up a box lunch. Lunch can be eaten in the ballroom or taken to your room. Anyone who finds this environment uncomfortable is welcome to take their lunch to the quiet room. If you would prefer us to collect your lunch for you and bring it to wherever you prefer to eat, just ask at registration.

Taking a Break and Getting Away

We will have a designated quiet room where you can go to relax if things are getting too much. If you would prefer to eat lunch away from the meeting rooms please feel free to do so. It is okay to leave at any time during a presentation – please just do your best not to be disruptive.

Content and “Triggers”

We will be discussing health, including mental health outcomes in the context of priorities for research. This includes, but is not limited to, discussion of research to address sexual health, gender identity, sexual assault, suicide and suicidal ideation, depression, anxiety, and trauma. We recognize and respect that some attendees may have personal history with these topics, and that attending during these discussions may ‘trigger’ experiences and emotions. In order to ensure the conversation remains on the big-picture goal to develop research and practice to address these topics, we ask that adults attending our meeting consider their own health in choosing what breakout sessions they attend. We also do not encourage disclosure or personal story-telling in this meeting, as this is not the purpose of the meeting. We are not able to support individuals in the way a different environment would allow. If individuals choose to participate in sessions which may result in these experiences, it is acceptable to leave the meeting space if needed.

Travel To and From the Renaissance Hotel

Parking Information

The hotel has self parking for $35.00 per day and valet parking for $53.10 per day.

Metrorail Information

Visit WMATA website

Options:

● Take the Red, Blue, Orange, or Silver Line to METRO CENTER metro station. Click here for walking directions from METRO CENTER to the hotel (0.4 mile).

● Take the Red, Green, or Yellow Line to GALLERY PLACE - CHINATOWN metro station. Click here for walking directions from GALLERY PLACE - CHINATOWN to the hotel (0.2 mile).

Please visit the WMATA website for additional detailed maps and schedules.

Airport Information – click on airport links to see detailed options. Ronald Reagan Washington National Airport (DCA) Visit DCA airport website ● Airport Phone: +1 703-417-8000 ● Hotel direction: 5 miles NE ● Alternate transportation: Subway (Metro): [Yellow line] GALLERY PLACE; fee: 2.5 USD (one way) ● Estimated taxi fare: 19 USD (one way) ● Bus service, fee: 10 USD (one way) ● Subway service, fee: 2.5 USD (one way)

Washington Dulles International Airport (IAD) Visit IAD airport website ● Airport Phone: +1 703-572-2700 ● Hotel direction: 27.8 miles SE ● Alternate transportation: Subway (Metro): GALLERY PLACE-CHINATOWN; fee: 9 USD (one way) ● Estimated taxi fare: 55 USD (one way)

Baltimore/Washington International Thurgood Marshall Airport (BWI) Visit BWI airport website ● Airport Phone: +1 410-859-7100 ● Hotel direction: 34 miles SW ● Alternate transportation: Amtrak to Union Station; (Metro) [red] to hotel; fee: 35 USD (one way) ● Estimated taxi fare: 65 USD (one way) 8

Hotel Images and What to Expect at the Renaissance Hotel

Entering the building

The building’s main entrance is fully accessible. Once in the building, use the elevator to go down to the conference room.

Image is the front entrance of the Renaissance Hotel Downtown Washington DC.

Hotel Lobby and Guest Check in

The Lobby area is a high traffic space with many different noises, textures and lighting. The Lobby area has both natural and fluorescent lighting.

Image is the Renaissance Hotel Lobby Level showing a mixture of natural lighting and fluorescent lighting.

Image is a Registration Desk area located inside the hotel lobby. There is a combination of blue and pink lighting illuminating above the counters. A water station is located to the left.

AASET Meeting Registration – Ballroom Level The Ballroom Level is two (2) levels down from the Lobby Level. Upon entering the floor, there will be “AASET Registration” signs to guide you toward the Registration table for the AASET Meeting. At the Registration table, we will have name badges, interaction badges, and a copy of the program for all attendees. Name badges will also have a number indicating which smaller breakout session group you are asked to participate in (see further down the document). Quiet Room Availability

There will be a quiet room available during the entire meeting which is located directly across from the AASET Registration table on the Ballroom Level. A sign will be posted indicating the “Quiet Room”. Meeting Room The main meeting space (Renaissance West) will be 2 levels down from the Main Lobby.

The meeting space (Renaissance West) and the room where the food is served have fluorescent lights. There is patterned carpeting with neutral tones throughout this level of the hotel.

Image is Renaissance West (the main meeting space).

Smaller Breakout Session Groups

Two of the breakout rooms (Meeting room 2 and 3) will be one (1) level down from the main lobby or one (1) level up from the Renaissance Ballroom level (depending on what floor you are on).

The breakout rooms have fluorescent lights. There is patterned carpeting throughout the rooms and hallway. ● We will form into smaller breakout session groups of 15-20 people for discussion. ● Some groups will go into smaller rooms for small discussion groups. Signs will be used and directions will be given. If anyone wishes to leave the small group discussions for a break, they are welcome to use the designated Quiet Room. Round tables will be the seating style for these rooms.

Image is a room where breakout sessions will take place (please note that there will be multiple rooms similar to this one but the room dimensions and layout may not be exactly alike).

Autistic Adults and other Stakeholders Engage Together

Engagement & Compensation Guide

Version 2.1 December 2018

Table of Contents

Authors...... 3 Contributors ...... 3 Funding ...... 3 Introduction ...... 4 Identity-first versus Person-first Language ...... 4

I. Presumption of Competence ...... 5

II. Compensation of Autistic Adults in Research and Other Settings ...... 6 Considerations for Compensation ...... 7 Guidelines for Monetary Compensation in Research for Specific Roles ...... 7 Principal Investigator (PI) ...... 7 Co-investigators (Co-I) ...... 8 Key Personnel ...... 8 Consultants ...... 8 Guidelines for Compensation of Consultants ...... 9 Non-Monetary Compensation ...... 11 Recognition of Scientific and other Contributions ...... 12

III. Communication Guide ...... 13 Communication Needs of Autistic Adults for Partnering with Researchers ...... 13 Guidelines for Email Communication ...... 13 Guidelines for Telecommunication (e.g. phone, Skype, Zoom) ...... 15 Guidelines for Researchers ...... 15

IV. Measuring Engagement in the Autism Community ...... 16

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Authors

Stephen Shore & Teal Benevides (Editors) with authored contributions from Elesia Ashkenazy, Amy Gravino, Becca Lory, Lisa Morgan, Kate Palmer, Jeanette Purkis & Karl Wittig.

Contributors

The Project Team and Community Council of the Autistic Adults and Other Stakeholders Engage Together (AASET) project provided comments and constructive feedback in November 2017 and voted to disseminate for feedback. These individuals contributing and providing input include (in alpha order): May-Lynn Andresen, Elesia Ashkenazy, Daria Blinova, Reid Caplan, Barb Cook, Dena Gassner, Amy Gravino, Anita Lesko, Becca Lory, Jamie Marshall, Lisa Morgan, Lindsey Nebeker, Kate Palmer, Bill Peters, Jeanette Purkis, Brigid Rankowski, Cyndi Taylor, Liane Holliday-Willey, & Karl Wittig.

Funding

This Guide was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN# 4208). The views presented in this guide are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Introduction

Thank you for your interest in supporting meaningful and inclusive research to advance knowledge and better outcomes for autistic adults. In order for research with adults on the autism spectrum to be meaningful and effective, it is our belief that researchers must include one or more autistic adults in the research process. Inclusion must occur on all future studies. In order for those partnerships to be successful, researchers and autistic adults must discuss and identify shared beliefs, values, and address topics which contribute to respectful dialogue prior to engaging together.

This document represents the work of a project team and community of autistic adults and other stakeholders, who together drafted and contributed to what is believed to represent important topics for meaningful inclusion in the research process. This is a working document, and feedback is always welcome. Please feel free to contribute at: www.autistichealth.org or by contacting the Project Lead: Teal Benevides at [email protected].

Identity-first versus Person-first Language

Please note we are using identity-first language in place of person-first language. Many stakeholders who contributed to this document prefer identity-first language that does not separate their experience of autism from who they are. This is an acceptable convention self- advocates use in print descriptions. As with any language, it is important to ask the individuals you are working with whether they prefer to be identified as a ‘person with autism’ or as ‘autistic’. This approach values autonomy and identity, and conveys mutual respect.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

I. Presumption of Competence

Authors: Amy Gravino and Kate Palmer

All project team members who engage with the autistic community should presume competence in their work with autistic individuals. Presumption of competence means that individuals are recognized as self-determined, autonomous, and fully capacitated persons who make decisions on behalf of themselves.

Presumption of competence also means that the range of abilities is recognized, and pre-existing beliefs or assumptions about ‘autism’ are suspended to ensure respectful and authentic collaboration and communication occurs with each individual.

It should be assumed that non-speaking individuals understand and can comprehend language (spoken and written), unless evidence suggests the opposite. A person’s right and desire to communicate through augmentative and alternative communication (AAC) methods, including sign, device, or text, should be respected in all research settings.

Respectful engagement occurs when the individual is:  Not a token—when doing work that matched skill level for something that was a part of their expertise (not underemployment);  Paid at the skill level they demonstrate;  Able to give feedback on research activities and when their feedback is given equal weight as other collaborators;  Provided work and expectations which are the same as others in that research role.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

II. Compensation of Autistic Adults in Research and Other Settings

Authors: Becca Lory, Stephen Shore, & Teal Benevides

Rationale: Autistic adults are often called upon to provide input, feedback, ideas and knowledge of lived experiences in research and practice settings. Individuals who are not in traditional faculty or research environments are asked to take part in these activities, frequently in ‘volunteer’ capacities, without the explicit acknowledgement that their input is fundamentally necessary and central to the work being accomplished. Although many research activities are ‘unfunded’, the researchers in these projects still are being paid for their time through their employment contracts. The work of others, however, is not compensated accordingly.

A specific recognition of roles and responsibilities, and the compensation aligned with those roles/responsibilities, allows for open communication between researchers, project members, and community advocates involved distally in research activities. There is a need to recognize the roles, the time spent in those activities, and the possible monetary and non-monetary compensation which could address the imbalance of recognized expertise.

Assumptions & Beliefs: ● All members of a research team, regardless of degree or training, have an invested stake in the outcome of the research.

● Although compensation cannot always be equivalent among members of a research team, nor would this be the expectation in any work environment, the compensation should reflect: o the type of role in research (permanent/continuous, such as a Principal Investigator; consultant/temporary such as those contributing to a defined task); o the experiences or training (e.g. both formal and informal), with those having greater formal or informal training to support the project activities receiving greater compensation; o the needs of the individual, such that those who may be negatively impacted by monetary compensation (e.g. through impact on Social Security Disability, or other support) are reviewed by the research team to determine alternatives in compensation that are ethically similar (e.g. provision of services instead of monetary compensation).

● Mutual respect between the research team and stakeholders is assumed, and commitment to the open communication which underlies that respectful relationship. This is exemplified through communication of the researcher about availability of funds, and the ©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

ability of the invited member to the research project to discuss their needs, training, and role in the context of what is available.

Considerations for Compensation

● Our Project Team and Community Council suggest and recommend that autistic adults be involved in all aspects of study development and design. Depending on the skills of the individual, a variety of roles should be considered. In all roles, however, autistic project team members would like others to know that there may be the need for accommodation for length of time for feedback, amount of structure required for tasks, and the type of communication preferences which are needed to ensure success.

● Members of the project team should recognize that preparation time for an autistic person may be more than someone without autism. This possible need for additional time for preparation for reading, responding, and editing materials should be considered and compensation should not be deducted from people whose processing speeds necessitate more time to finish a project.

Guidelines for Monetary Compensation in Research for Specific Roles

Our Project Team and Community Council, including those with formal training in research, as well as self-advocates, providers, parents, and other stakeholders, developed this document as a fluid and flexible guideline. It should be used to stimulate discussion, rather than set strict limits. Roles, possible responsibilities, and suggested considerations for compensation are outlined below.

Principal Investigator (PI)

The PI is the person who typically writes and submits the project, is responsible for the budget, the writing of roles and identifying necessary project components to meet project outcomes, is responsible for the legal and ethical conduct of research to include all stages of the research process, all the way through dissemination. The responsibilities include: management of all personnel and consultants, responsibility for the submission of deliverables and progress reports on project outcomes, management and oversight of budget, compliance with ethical, institutional, and funder requirements. Depending on the type of involvement and staffing of the project, this role may range from 10-50% effort. Principal investigators time is compensated in line with existing institutional requirements along the salary structure provided upon hiring. Investigators from institutions are compensated through a percentage of time that their efforts on the project require, and the budget takes that percentage from the salary. The PI cannot increase or decrease their salary, as this is an institutionally-set number. The PI can only modify their effort.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

 Trade offs: If the PI lowers their effort, management of the project may suffer. Additionally, some funders will not fund projects in which the PI’s effort is too low and does not adequately support the project activities.  Institutions have federally-managed agreements with percentage of projects allocated for fringe benefits. Some funders cap required fringe benefits at 40%, and others allow the institution to negotiate their own rate. The PI has no control over the amount budgeted for fringe, as this is an Institutional requirement.

Co-investigators (Co-I)

Co-Investigators are also responsible for the outcomes of the project, and often were involved in the development of the grant/project. These investigators typically conduct or oversee aspects of the project that their expertise is needed for. Responsibilities include: oversight of specific components of projects, depending on the project deliverables and goals. Depending on the project, the Co-I can have more effort, equivalent effort, or less effort than the PI. Similar to the description above, if the Co-I is located at an academic institution, the effort or percent time on the project to complete activities drives the compensation. The Co-I’s existing institutional salary is used to determine the amount budgeted.

Key Personnel

Key personnel on a project are defined by specific roles, which may not require much formal research training, but are essential for success of the project. These responsibilities vary by the role, but can include: recruitment coordinator, data management coordinator, research coordinator. This role is typically paid on a part-time or full-time basis through the institution doing the research. Hourly rates and salaries are typically defined by the institution. For example, the state-managed Augusta University has salary guidelines for administrative roles such as Research Coordinators, with the range of hourly compensation being $15-$18/hour. (e.g. https://erecruit.augusta.edu/psp/hrp461/SS/HRSS/c/HRS_HRAM.HRS_CE.GBL)

Consultants

The consultant role is typically used for defined, specific roles with a clear Scope of Work. That Scope of Work identifies the responsibilities of that individual and the timeline in which that individual will complete the work and be paid, as well as the rate of compensation. The Scope of Work becomes a legal document defining the expectations and deliverables for that individual to be paid. Consultants typically have an experience or training background that requires their specific involvement as a consultant. Consultants cannot have conflicting roles with the primary funding institution. o There are two ways for Consultants to be paid:

1. Consultants are paid an hourly wage for a predefined number of hours. The number of hours is typically based on the expectation of how long the task will take. The

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

consultant is typically obligated to complete the task, regardless if it takes more or less time than is agreed upon.

Example: Consultant to develop a website. The website design and development is expected to take 20 hours. The consultant is paid an hourly rate for those 20 hours. If the consultant takes more than the 20 hours, there is typically no additional budget to pay that consultant, but the consultant has signed a Scope of Work agreeing to complete the work.

2. Consultants are paid a stipend for a predefined task. The task is defined in advance and the payment is made in either one or more lump sums. Typically payment is done for smaller tasks over a shorter time.

Example: Consultant to review an outcome measure and provide feedback for the research team. The consultant is paid $50 to attend a focus group to review and share feedback about the outcome measure items. The consultant receives a gift card or check at the end of the focus group; no further involvement or responsibilities are needed.

Guidelines for Compensation of Consultants

● Self-advocates and other stakeholders who demonstrate leadership and advocacy skills are valuable members of the research team and should be compensated accordingly. ● Work reflects training and experiences. ● Although grants and project budgets vary, a respectful minimum hourly rate for individuals contributing skilled products or engaged in leadership roles on a study (e.g. leading or running interviews, advising the research team on process or procedures, contributing to the writing or dissemination efforts of grants or publications) is suggested to be $50/hour. For persons with more or less experience, that hourly rate may be different. ● Compensation for tasks should include both preparation time and task time. For example, if a consultant is asked to run a focus group, the preparation time, to include planning meetings and time for drafting materials, is necessary. ● Occasionally, a task will require the consultant to write up post-task findings, or contribute to follow-up meetings. This time should be considered in the compensation for tasks.

Example of compensation:

Dr. Researcher is conducting a study on mental health outcomes, and would like her autistic partners to read and contribute to the development of a questionnaire to measure anxiety. She anticipates that the development will involve a 2 hour focus group, reviewing the notes and ©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

developed 1-page questionnaire, and a 1-hour follow up meeting. In order to pay her consultants, she should anticipate that the project partners will need: 2 hours for the focus group, 2 hours preparation to review notes and the questionnaire, and 1 hour for the actual follow up meeting, for a total of 5 hours. At a rate of $50/hour, each consultant will receive $250 for their participation in this task. Additionally, if extensive travel is required, the travel compensation will be included in the compensation package.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Non-Monetary Compensation

Author: Lisa Morgan

Alternate forms of compensation for members of a research team who would not benefit from monetary compensation are listed below. Gift cards must be useful to the research member being compensated. The gift cards must be redeemable within a reasonable distance from their home and be suitable for the stores, cinemas, restaurants, etc., found nearby. Gift cards are considered compensation and team members who receive these must recognize them as forms of income. Additionally, it should be recognized that not all funders, universities/colleges, or organizations will allow non-monetary compensation. All compensation should be evaluated thoroughly by administrative teams to ensure no conflicts of interest or policies to the contrary are in place for such compensation.

 Gift cards and/or certificates for items and services such as: food, haircut, spa, gas, restaurant, phone card, cinema, etc.

 Recognition where appropriate for the research team member to feel compensated. If the research team member is agreeable, a certificate of participation in the research study can be given as compensation.

 The provision of a professional or personal reference or recommendation related to the quality of the research team member’s work product can be a valuable resource when furthering their studies or applying for employment.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Recognition of Scientific and other Contributions

Author: Karl Wittig

Any contributions to research and associated efforts by autistic individuals should always be recognized in an appropriate manner, barring considerations of privacy or confidentiality.

While this is generally required by scientific and research ethics, it is especially significant for autistic contributors, who often have had painful experiences of being marginalized and excluded because of their differences. To them, such recognition represents more than simply another item to include in their resume or curriculum vitae.

The appropriate form of recognition depends upon the nature and extent of the contribution. In the case of a conference presentation, autistic contributors should be named at the end of the presentation (or wherever appropriate) either as an explicit category, or else listed along with others who contributed in the same or comparable capacities.

 In the case of a scientific paper in a research journal or volume (academic or professional), autistic contributors should be acknowledged at the end of the article (or wherever appropriate), along with all other contributors, in whatever manner is most appropriate. If the contribution is of fundamental or otherwise substantial significance, the autistic contributor should be invited to be listed as a co-author.

 In the case of a non-academic (e.g., popular) publication, presentation, or media appearance describing the research in question, significant contributions made by autistics should at the very least be given mention. In any of these cases, autistic contributors who prefer to maintain anonymity should be given the option of declining public acknowledgement.

The above criteria are for the specific cases mentioned. The same (or at least comparable) considerations should be used in any other cases.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

III. Communication Guide

Authors: Elesia Ashkenazy, Stephen Shore, & Teal Benevides

Communication Needs of Autistic Adults for Partnering with Researchers

Autistic adults have different styles of communication. Researchers should understand that an adult with autism who is non-speaking or limited in ‘typical’ verbal communication does not indicate diminished mental capacity. Often, assistive and alternative communication (AAC) can be used even by speaking individuals, especially in high-stress situations.

Research partnerships should recognize and incorporate the following guidelines into their collaborative activities:

1. There is a saying "less is more." This holds true to the communication needs of those on the autism spectrum. Due to the fact that our mind is bombarded with multiple stimuli simultaneously, excessive wordiness can easily become overwhelming. We function best when communication is presented in short and to the point descriptions.

2. Content is exceptionally well received when presented in numbered or bulleted format with brief sentences. This is true for publications, emails, instructions, and protocols.

3. Requesting and using accommodations for communication by no means indicates diminished or limited mental capacity.

4. Details are important and noticed. For example, when scheduling a meeting, be clear about the date, time, and time zone for clarity.

Guidelines for Email Communication

All email communication should be brief and organized in order for action to occur. When communicating by email with autistic research partners, using an email template to briefly convey the message using the headers below is recommended.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

PURPOSE OF EMAIL: [include 1 sentence with the main purpose of the email. If multiple purposes, use numbers or bullets]

DETAILS: [Use bullets to share details or provide necessary information to accomplish the purpose]

ACTION: [Indicate the clear verb requiring an action. If there is no action, and the email was for information only, state it.]

DEADLINE: [Provide a date and time deadline for the action to occur]

OTHER INFORMATION: [If there is any other information that does not fit in a category above, provide it here] Template developed by © Elesia Ashkenazy, used with permission

Example Email

Purposes of the Email: ● To share results of the Year 1 meeting ● To request feedback on Conference Summary (short, 3 page summary)

Details: ● The Project Team would like feedback on the Year 1 meeting results so that we can provide to the autism community, researchers, organizations, etc. ● We will incorporate feedback from the Community Council prior to sharing with the attendees of the year 1 meeting or posting on Facebook and AASET website. ● Questions include: o Are the materials written in a way that is understandable? Clear? Respectful? o Is there anything missing that you would want to know?

Actions: ● Read the Conference summary ● Use track changes to share edits or comments on the content of the summary ● Send feedback to [email protected]

Deadline: Wednesday October 4, 2017 at 5pm Eastern Time

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Guidelines for Telecommunication (e.g. phone, Skype, Zoom)

Some people have preferences for telecommunication. In large groups, it is difficult to meet all communication needs. However, often phone communication can be challenging due to several factors-- the overreliance on auditory attention to accomplish meeting goals, the need for sustained attention to different and unknown speakers (for multi-person calls), and the difficulty with following a conversation if attention is lost for part of the time.

Other alternative forms of communication can be offered, including Zoom(R) or other video conferencing to allow the person to visually see the speaker. Platforms that allow for typing questions or comments, should a person need to communication via non-spoken language, is important.

Guidelines for Researchers

Due to the possibility of mis-communication between autistic and neuro-typical research team members, it is always important to document decisions, meetings, and requirements of all research team members. Some possible ways to reduce mis-communications include:

 If everyone on the team agrees, use an audio recording device or record Zoom meetings for transparency, and store dated audio files in a shared folder. If any questions arise in the future, resolutions can occur by revisiting the meeting record. Note: it is illegal in some states to record meetings without the consent of all parties. Therefore, this is something that should be transparently done as a way to ensure trust and commitment to open communication.

 Document meetings clearly, with bullets and reduced text, to clearly communicate the action or goal for each team member. Provide these within 24 hours of the meeting occurring. Make them publicly available to the team as a matter of record.

 Consider using a cloud-based project management software, in which all team members can visually see the tasks, who is assigned to them, and the timeline.

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

IV. Measuring Engagement in the Autism Community

Author: Jeanette Purkis

Autistic people engage in research in a number of ways and through many roles. They might be academics, project leaders, consultants, researchers, participants in various research activities (e.g. focus groups, surveys etc.), peer researchers and/or mentors.

Evaluating and measuring levels of engagement is essential to the outcomes of the project. It is critical to gathering the data which informs the research. It is important to evaluate levels of engagement with autistic people who are part of the project team as well as those participating in the research. In general terms, the greater the level of engagement from the autistic community, the greater the quality and depth of the data collected. As such, understanding the factors promoting or limiting autistic engagement and being aware of how to engage autistics is crucial to achieving the outcomes for the project.

While autistic engagement is essential to this project, many autistic people are unwilling to engage in research. This can be due to a number of reasons, including a lack of trust in researchers or the research process, concerns about breaches of privacy and confidentiality, previous poor experiences of participation in research, concerns about tokenism or exploitation and feeling that their contribution will not be useful or used well. Genuine inclusion, having autistic researchers and peer researchers and valuing the views of autistic people and their input at every stage of the project are ways of helping to address this.

Measuring the degree of engagement in research by autistic people is a key way to ensuring that these barriers to participation are being broken down. A high level of engagement from the autistic community is an indication that the research question/s, rationale and methodology are aligned with the needs of the autistic community.

Engagement can be measured in variety of ways. Some qualitative indicators of engagement include: - Autistic people are willing to participate (e.g. attend workshops, focus groups, seminars etc) - Autistic people involved in the project as researchers, consultants or project leaders express job satisfaction - Autistic participants feel they can trust researchers - Autistic participants express a change in their perception of the value of participating in research - Research participants would like to be more involved in the research

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

- The willingness of autistic participants to share information about the project, for example through posting information on the project in social media and discussing it with friends and colleagues.

In quantitative terms, indicators of engagement might include: - The number of autistic participants in the different elements of the research - The number of autistic people involved in the project as researchers, consultants or project leaders - The number of events participated in by each individual - The number of posts and shares of information about the project on social media - The number of requests to be more involved in the project / undertake additional activities - The number of requests for further information on the project - The number of mentions of the project on autistic-run and more general autism groups online

©Autistic Adults and other Stakeholders Engage Together (AASET), Engagement & Compensation Guide, Edited by Project Leads: S. Shore & T. Benevides, Dec 2018

Autistic Adults and other Stakeholders Engage Together Year 2 Meeting Evaluation Form

Meeting Objectives At the conclusion of this meeting, attendees will:

1. Discuss research priorities to address health for autistic adults learned through a PCORI Engagement Award.

2. Identify best practices for engaging the autistic adult community in collaborative partnerships and research.

3. Develop an action-oriented plan to address research priorities through collective impact.

Please circle your response. Turn in this Evaluation Form at the end of the meeting at the Registration Table.

Neither Strongly Agree Strongly Agree Disagree Agree nor Disagree Disagree

The Meeting Information and Accessibility Guide content was useful. 5 4 3 2 1

I felt the meeting produced action steps that are important to the autism community. 5 4 3 2 1

I felt my time was valued when discussing research priorities. 5 4 3 2 1

I plan to stay connected to the AASET Project and their work. 5 4 3 2 1

Opening Keynote: Engaging Key Stakeholders in Autism Research Neither Strongly Strongly Speaker: Paul Shattuck Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree The content was relevant to the Meeting Goals 5 4 3 2 1 The speaker met my expectations 5 4 3 2 1 Comments:

AASET Priority Setting Results Neither Strongly Strongly Speaker: Teal Benevides & Kate Palmer Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree The content was relevant to the Meeting Goals 5 4 3 2 1 The speaker met my expectations 5 4 3 2 1 Comments:

Engagement Guide Presentation and Discussion Neither Strongly Strongly Speaker: Stephen Shore Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree The content was relevant to the Meeting Goals 5 4 3 2 1 The speaker met my expectations 5 4 3 2 1 Comments:

Panel Session: Priority Setting and Neither Engagement with Autistic Adults in Research Strongly Strongly Agree Agree nor Disagree Panel: Judy Endow, Katherine Gotham, Matt Lerner and Alicia Thomas Agree Disagree Disagree ______Not Applicable, I did not attend this session The content was relevant to the Meeting Goals 5 4 3 2 1 The speaker met my expectations 5 4 3 2 1 Comments:

Breakout Session 1: Gender & Health Leaders: Brigid Rankowski & Reid Caplan Neither Strongly Strongly Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree

The content was relevant to the Meeting Goals 5 4 3 2 1 The Discussion was well-facilitated 5 4 3 2 1 Comments:

Breakout Session 2: Mental Health Leaders: Becca Lory, Lisa Morgan, Teal Benevides & Matt Lerner Neither Strongly Strongly Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree

The content was relevant to the Meeting Goals 5 4 3 2 1 The Discussion was well-facilitated 5 4 3 2 1 Comments:

Breakout Session 3: Access to Healthcare Neither Leaders: Dena Gassner & May-Lynn Andresen Strongly Strongly Agree Agree nor Disagree Agree Disagree ______Not Applicable, I did not attend this session Disagree

The content was relevant to the Meeting Goals 5 4 3 2 1 The Discussion was well-facilitated 5 4 3 2 1 Comments:

Three things I will commit to doing as a result of learning something at this meeting:

Three things I would change for future meetings are:

Provide feedback on other things we did not ask about above: