Contact

Working Together

Select learning style:

1. Team trust and safety

Back
22%
Next
Duration: 14:24

Transcript here.

+ Show transcript

Module 1. Introduction

- Hi, my name is Matthew. In this module, you will learn about the guiding principles for working together. You will learn the importance of making a positive impact on individuals ‘lives. You will also learn about the benefits of being a research partner. Finally, you will be introduced to what helps build trust with research partners. We have added optional resources. Click on each lesson to learn more.

Module 1: Team trust and safety

  • Lesson 1: Guiding principles
  • Lesson 2: Language considerations
  • Lesson 3: Knowing about ableism
  • Lesson 4: Respecting each other
  • Something to think about

Lesson 1: Guiding principles

Our research partners identified four (4) guiding principles for
building trust within an autism research team:

Disclosure

Our project relied on word-based communications. Most interactions happened through video conferencing. We did not offer other ways to communicate, like arts or movement activities. Research teams should explore inclusive ways for research partners to communicate.

Making a real-life impact

People are interested in autism research because they want to make a positive impact on individuals’ lives.

Time and effort are precious

Community partners have limited energy to engage in research. Researchers and clinicians have a lot of demands on their time. The research work must focus on an important topic that has real-life impact. Flexibility and options for participation are critical so that working together is possible.

Collaboration is worth the time and effort

Some benefits of participation include being connected to a community, developing friendships, following a personal interest and learning new skills, mentorship and support.

Fair payment for expertise should be provided to community research partners.

Some forms of compensations:

A non-autistic parent shares some of the benefits of being a research partner:

  • Discussing topics she is passionate about.
  • Having an impact to support other families.
  • Learning skills she can add to her resume

- I appreciated the opportunity to work with the UVM researchers, to learn about the research process. It was nice to get paid, and so I haven’t been able to work outside of the house or it’s been difficult for quite some time.

So just having this opportunity to, you know, do something meaningful, to connect with others, to learn about, you know, and discuss something that is so, I’m very passionate about because of my kids and our experience and, you know, I’ve learned so many... Just, you know, in terms of navigating the different computer systems or I‘ve gotten a lot more proficient in the Google Docs and, you know, Zoom, I’ve learned, you know, I’ve gotten a lot of experience being part of Zoom meetings and how that process goes.

For the past several years, I’ve thought about, you know, the need to put a resume together and thinking, you know... 5, 10 years ago, I was like, ”I don’t know what I would put on a resume.” And I actually now can, this is something I can put on my resume. It’s difficult navigating these systems when you have, when you’re supporting an individual with such high needs. And so to provide support that will help pave the way for other families is, you know, I think that, you know, I feel really good about that.

Lesson 2: Language considerations

It is important to be aware of language preferences of autistic people on a research team. People on the autism spectrum have different preferences for how they describe themselves. Words they use for themselves may not feel right for others to use. There is no consensus on correct language. It is best to ask someone what they prefer. Respecting autistic people’s preferences is important.

Ways to talk about autism

Disorder-based language:
Autism is a problem that needs to be fixed or cured. Ex. Autism Spectrum Disorder (ASD). Suffering from autism. Avoid this language. Consider using Autism Spectrum Condition (ASC).

Person-first language:
Puts the person front and center. The focus is on the person, not their disability. Helps fight stigma related to disability. Ex. A person with autism. A person on the autism spectrum. No consensus. Respect what an autistic person prefers.

Identity-first language:
Some conditions make up a core part of our identity or culture. Influenced by Disability Culture and the Pride Movement. Ex. An autistic person. A person who is autistic. No consensus. Respect what an autistic person prefers.

There is no consensus

Some people on the autism spectrum feel very strongly about person-first
language. Other autistic people want to use identity-first language. When unsure, non-autistic research partners may choose to use “Autistic person”, “Person on the autism spectrum”, “Person who is autistic.” In this project we say "autistic person" and "person on the autism spectrum." It is important to respect the language an autistic person uses for themselves.

Autism and other experiences

The autistic experience is complicated by individual differences:

  • Disability: Some autistic people identify as having one or multiple disabilities, while others do not.
  • Race: Autistic people of color often do not get an early childhood autism diagnosis.
  • Gender: Gender affects whether autism is recognized, overlooked, misdiagnosed, and, if diagnosed, at what age.
  • Gender identity: Autistic people are 6x more likely to identify as non-binary, gender fluid or transgender.
  • Culture and religion: Some cultures and religions may have different explanations for autism.
  • Language: Autism may be missed in people who do not speak English as their first language.

Accepting and recognizing self-diagnosed autistic people is important. Having a diagnosis is a privilege many people do not have.

Diversity in gender identity

Gender identity is someone’s personal concept of self as male, female, a blend of both, or neither. Someone’s gender identity can be the same or different as their sex noted at birth. We cannot tell gender identity by how someone looks or acts. Teams can make it safe to share what pronouns people use. Some people may not be ready to share their pronouns. When unsure, it’s always safe to use the person’s name.

Lesson 3: Knowing about ableism

It’s often hard to see ableism because we learn it from our daily lives. Internalized ableism is when people with or without disabilities are not aware that they have ableist beliefs. Systemic ableism is everywhere in society. It’s part of all systems and institutions. It makes us think there is a right way to be or do things.

A note on systemic ableism

Ableism prioritizes behaviors that society recognizes as “normal.” This is when the ways of doing things work for common abilities. Most people do not see in the dark, so cities have streetlights. If most people were blind, streetlights would not be a common accommodation. When ableist norms are in place, some people’s strengths don’t have room to come out.

What internalized ableism looks like:

  • Having internal negative self-talk:
    • “I can’t do this.”
    • “I should be able to do this without help.”
  • Thinking you need to “fake it until you make it.”
  • Fear of being exposed as a fraud.
  • Valuing unrealistic independence, like the expression “picking yourself up by your own bootstraps.” This means doing something impossible.

What systemic ableism looks like:

  • Payroll systems to enter time online require many steps and are difficult to navigate.
  • Fluorescent lighting that cannot be adjusted.
  • A person needs to request “special accommodations.”
    • They may not know what accommodation to ask for.
    • Someone has authority over the person and can refuse what they need.
  • Research “about us without us.”
    • For example, thinking all autistic people want to cure autism when many people see it as their identity.

Lesson 4: Respecting each other

Inclusive group norms that are supportive and accommodating:

  • Provide options for participation
  • Make time to hear everybody
  • Read video conference chat input in a timely manner
  • Check for understanding
  • Have a process to address missteps and misunderstandings.
  • They may raise important issues
  • Have meetings for people with similar identities but also meet in mixed groups
  • Review group norms at the beginning of meetings

Meeting facilitation

A good meeting facilitator needs to support the group’s meeting
norms. The facilitator addresses and follows up on emerging conflicts or
concerns. Some virtual platforms allow private chat. It can be used to alert the facilitator about concerning situations, reach out to a supporter. It is important to balance the needs of the group and the needs of the individual.

Inclusion and acceptance

Within the autism and the research communities, people have different experiences and opinions. Some important topics include controversial aspects:

Learning together

For participatory research to succeed, it is important to create a safe space to learn from each other. People may be uncomfortable at times as they learn. It is important to respect and support different levels of understanding. Autistic people face a lot of difficult and traumatic experiences. Their safety should be prioritized. Everybody should feel safe. Working together helps everyone.

How to be supportive

Ask and respect everyone’s identity preference. Use a person’s correct pronouns or use their name if unsure. Be patient. Take time to hear and understand everyone on
the team. Make it safe to be different.

Something to think about

What makes you feel comfortable joining a new group? (Check all that apply)

  • Having enough time to share
  • Being understood
  • Being able to be myself
  • Having common interests
  • Having common experiences
  • Being respected
  • Being supported
  • Other

You are done with module one. Click on next to continue to the activity and click on next module to access the following video.

Glossary
Back
22%
Next

This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award EACB 24096

For more information, contact the project co-leader Dr. Liliane Savard at liliane.savard@uvm.edu 

Skip to content