Autistic people* and the parents/caregivers of people on the autism spectrum need to be part of research teams. This helps make sure research focuses on what matters to the autistic community and what truly improves health and quality of life. 

There are many barriers to participation,  especially in a rural state like Vermont. Some of these barriers include a housing shortage, transportation issues, and a lack of healthcare access and support personnel. Community members have little time and energy left to engage as partners in research. There is also mistrust between autistic people and non-autistic people, especially in the healthcare and research world.

Goals

We designed this project together as a group of autistic and non-autistic partners to achieve the following goals:

• Build trust with the Vermont autism community. 

• Learn how to engage more autistic adults and parents/caregivers as research partners in a sustainable manner.

*People use different words to talk about autism. In this project we say "Autistic person" and "person on the autism spectrum." Many people prefer these words.

Lesson #1: Autistic people have multiple other identities. 

• Allow people to choose which group they want to represent. 

• Use language like “autistic and non-autistic parents, and doctors”.

Lesson #2: Non-autistic research partners may also have a disability and need accommodations. 

• Using principles of universal design with multiple options for participation supports everybody.

Lesson #3: Many people prefer closed captions by a person. 

• They are more accessible than those generated automatically by Zoom.

• This is especially important for participants who are deaf or hard of hearing.

Lesson #4: Smaller group size (5-10) is more comfortable and accessible. 

• Provide the size of the group in advance.

• Let people know in advance if breakout rooms will be used.

• Allow time for people to meet with others with similar experiences so they can share more candidly.

Lesson #5: How visual information is presented is important.

• Some people use regular phones and many use smartphones to join a Zoom meeting in Vermont. 

  • Provide printed materials in advance if information will be shared on the screen during the meeting.

• Provide a PDF version of the material so it is easy to zoom in for people with visual impairments.

• Make sure website material is accessible to screen readers and add alt text to pictures.

Lesson #6: Language is very important.

• Autistic people use both identity-first language or person-first language.

• Choose language that is not medical. Consider using "condition" instead of "disorder". Use "person with autism" or "person on the spectrum" instead of "person with autism spectrum disorder".

• Plain language does not mean to "dumb it down":  

  • Use simple, common language to give the same information.

  • Plain language is not the same as "easy read" language. Training on plain language is available. Some people with disability are expert on plain language and can be hired to help with language.

  • "Accessibility" requires access to the information. Provide options for accessing different levels of information. 

• Making pronouns optional, using someone's pronouns or using gender neutral pronouns when unsure is important.

  • There are many different gender identities in the autism community and respecting everybody is important.

Lesson #7: It's easy to skip breaks during Zoom meetings. 

• People need breaks. 

• Include breaks in the agenda and on slides.

Questionnaires

The questionnaires were designed with input from the whole team and our community consultants.

• Demographics 

• Project tools and support 

• Focus group and Datawalk questions 

• Satisfaction survey after the focus group 

• Final satisfaction survey after the Datawalk

Focus groups

The focus group questions were carefully crafted with input from our whole team, including community consultants. Focus groups were conducted over Zoom.

We organized 3 small focus groups for autistic participants. There were 5-6 people in each group.

1. Autistic participants who also disclosed having an intellectual disability or using Augmentative Alternative Communication AAC (6)

2. Autistic parents of a child on the autism spectrum (5)

3. Autistic participants (6)

We organized one large focus group for non-autistic caregivers. There were 16 people in this group

• • Click here to find the Agenda and questions asked during the focus groups

Datawalk

We shared the results through a larger Zoom meeting called a Datawalk (or Data Walk).

Learn more about Datawalk in general with this article.

• Click here to find the Agenda and questions asked during the Datawalk.

Analysis of the data

In small groups, our team read the transcripts of the Zoom meetings and identified the main messages from each focus group.

Then, we asked the group participants if the main messages accurately represented what was said in the focus groups. We used the feedback to improve the main messages.

Our team combined similar main messages from all groups and presented them to all participants at the Datawalk and through an optional questionnaire. We used the feedback to further improve the main messages.

Finally, we looked at all the questionnaires and survey data and looked for similarities and differences between the key messages that were shared.

Lessons learned

We reflected on all that we learned from the project more generally.

We identified what we would do the same and what we would change in the future as we engage with potential research partners.

And some wonderful University of Vermont graduate and undergraduate students: Caitlin Allan, Sophie Knox and Emma Tschaikowsky.