4. Communications
Transcript here.
Module 4. Introduction
- Hi, my name is Emily.
In this module, you will learn about the importance of communication to support positive experiences within a research team that includes autistic and non-autistic people.
We include considerations for clear expectations as well as self-care strategies.
Finally, we’ve added optional resources for you to learn more. Click on each lesson to get started.
Module 4: Communications
- Lesson 1: Responsibility for connection
- Lesson 2: Clear expectations
- Lesson 3: Self-care strategies
- Something to think about
Lesson 1 : Responsibility for connection
Team members have different communication styles and ways of thinking. These differences can lead to misunderstandings. Non-autistic people need to try to understand autistic partners. Team members can help “translate” and support mutual understanding.
Advice to researchers
Have contact with autistic people. Develop personal relationships and explore a variety of topics. It’s not easy to get it right and have a positive relationship. Be sensitive of ethical issues as well as boundaries.
- So, I think one of the first things to me is that if you're gonna be a researcher and you haven't had a lot of contact with autistic people, have some contact with people and, you know, have a sense, some balance of personal and contact and, you know, exploration of topics and subjects and stuff maybe before it's even a formal research thing. And you have to be careful with the ethics of, you know, how to do that appropriately and in healthy way. And you know, at least, I can't give very quick advice to that, but I think you keep that in mind.
In my first relationships, no, and I mean that in a casual sense of relationships with autistic people, other autistic people were tricky and different and stuff. Interacting with people with different sorts of social skills and ways of doing things and stuff, even though I have different ways of processing things, is different. And so even as an autistic person, it's not automatically simple or easy to really get it right and have those positive relationships.
And then the other thing with that piece is to be really, really careful and sensitive to the consequences of those relationships and how to, definitely, I mean, it's important not to use things against people in those relationships too, and that can be hard because there's a lot of sense of dual relationship to this kind of work where we're being supportive to people, and we have our own lives, and we have our own needs.
Advice to community partners
There are multiple priorities that need to be balanced for research to be feasible. Understand that not all of your ideas can always be implemented. Work in a collaborative way to achieve the best outcome for the project. Understanding has to go both ways.
- [Speaker 1] I think the biggest piece of advice I would have from a researcher to an autistic research collaborator, if that's okay. Can I shift the question a little? Is kind of looping back to things that Michael has kind of touched on already about this balance between kind of wanting to go deeper on these different avenues, but then also realizing that that's not always feasible. I think researchers are often tied in a lot of ways to, you know, the institutional bureaucracy or you know, the funding mechanisms, requirements and things like that. And so if there's, in a collaboration, if you put forth an idea about, "Oh, I think we should study this, or we should do it this way," just being open to the idea that we might not always be able to do that, right? Just because... Which is not to say that it's not a fabulous idea or, you know, we wanna do that in the future, but sometimes we do need to balance that kind of the needs of multiple different agencies and inputs with the feasibility, with, you know, where it can go in the long term. So just kind of recognizing that, and working in a collaborative way to kind of reach the best possible outcome for that particular project.
- [Speaker 2] I think that's a really good message. It really suggests that in research it has to go both ways for it to work. Both the researcher has to understand the unique needs and differences that an autistic partner brings, as well as the autistic partner understanding what the expectations are from our end.
Balancing different needs
Different communication styles and accessibility needs can create challenges. Some people’s communication needs can get in the way of other people’s needs. Balancing individual needs and the needs of the group can be difficult. Mutual respect and understanding improve as team members get to know each other.
Example 1
Someone may interrupt a team member to add their thoughts to the conversation. They may have memory challenges and are afraid to lose their idea. The team member who is interrupted may become upset: they have learned that it is rude to interrupt; they may be upset that someone is breaking this conversation rule. It's important to be tolerant.
Example 2
A team member describes their experience in detail. They want non-autistic people to understand what they mean. Another team member cannot process a lot of verbal information at once. Without pauses to process, this team member may be left out of the conversation. Summarize, check in for understanding, and plan enough time for discussions.
Sometimes, parents and their child or adult relative are on the same team. Each person should have space to communicate for themselves. It’s important not to speak for someone else unless they ask for support. Let research partners share their own ideas first. Then, it might be okay to add more about their situation if they agree.
Lesson 2: Clear expectations
People may enter a research team with different ideas about the goal of a project, how the tasks will be shared, the flexibility of the timeline, how decisions will be made.
What a person expects when joining the team can influence the group dynamics. Clear, common expectations contribute to a sense of fairness and satisfaction. It is also important to know about team members’ personal goals.
Important information to have:
- The goal of the research study
- Your personal goals
- Who is in charge
- A clear, detailed job description
- Payments and impact on taxes and benefits
- Supports and accommodations available
- Timeline with important dates
- What is flexible and what is not (e.g. deadlines, work environment)
- Who are the other people on the team
- How information is shared
- How decisions are made
- Who pays for the project
Including research partners’ ideas
Discuss the project with community partners to understand their vision and ideas. Be ready for the ideas to change with people’s input. Consult with people who are experienced in engaging research partners in similar projects.
Staying on track
Review the goals of the project at the beginning of each meeting. People may change course or lose track of the initial goal. Create space for people to share their ideas. Take time to figure how these ideas may be used in the project. When people disagree, review the goals and limits of the project.
Check in regularly on how things are going. Discuss and reassess expectations. Apply what is learned through the experience of working together.
Work style
People may have different work styles. Team members may approach the project in different ways. A person’s role or experience can change the support they ask for or expect. Reach out and offer support and flexibility with the timeline when possible.
Autistic communication
Autistic people may face challenges expressing expectations. This may affect sharing about sensory issues and inclusion challenges. They may share only what they believe will be accepted. This may impact their overall experience.
Transparency
Autistic individuals may be transparent about some aspects but protective about others. They may not disclose certain expectations. Transparency in one aspect doesn't guarantee openness about everything.
Lesson 3: Self-care strategies
Even when everybody is doing their best, tense situations will happen. People may have different reactions and emotions: be upset, disagree, feel unheard, feel overwhelmed, be stressed, not feel respected, become dysregulated.
Consider using these strategies:
- Reflect about your situation.
- Recognize your emotions: frustration, anger, boredom, despair, etc.
- Recognize your physical reactions: breathing, lump in throat, jaw getting tight, sleepiness, stimming, etc.
Trust yourself
Decide what you want to communicate in the moment and what to keep for later. Take a deep breath and speak up about how you feel. Address the meeting facilitator directly or the whole group. Always be respectful. Ask for what you need: more time to process, change deadlines, etc. Or step back and take a break.
Being honest
Sometimes, we may not treat other team members honestly.
Examples:
A researcher may worry that a community partner will be upset that their idea is not feasible. They do not provide the information and change the topic.
A meeting facilitator may assume that what a person is saying is “off topic.” They move on with the conversation without asking clarifying questions.
Communication strategies
Clashes can happen where 2 people do not understand each other. Tell someone that you care about the relationship and that you have concerns. If a topic comes up again and again, try to understand what about it is important to the person. Ask for clarification. Say what you understand. Ask if there is something else that you haven’t understood. Try to find out if there is a piece of information the other person has that they might assume you understand. Be patient and take time to understand.
Be brave
Community partners, trust yourself and believe in your capacity to share your “voice.”
Non-autistic partners, trust that you can understand and make autistic people feel safe.
Contribute positively to resolve conflicts and bring closure. Put the relationship first.
Something to think about
What is hard for you to do in a conversation where you disagree?
- Feel my body
- Feel my emotions
- Step back and take a break
- Take a deep breath
- Trust that it can be resolved
- Ask clarifying questions
- Stay in the relationship
You are now done with the last module. Click on Next to continue to the activity and click on Finish to get your certificate.