Building Neuro-Inclusive Communities

By JoLynne Lyon | April 26, 2024
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Sumiko Martinez, Ph.D, directs the Autism After 21 Utah Project
for the Madison House Foundation. Ann Carrick
is the Autism After 21 Communication Manager.

An Interview With Autism After 21 Utah Project Researchers

The latest Developmental Disabilities Network Journal includes an article on building neuro-inclusive communities. “The U.S. Surgeon General notes that loneliness and isolation is an epidemic in the US,” the abstract states, “and that it is exacerbated for individuals with physical and mental disabilities as well as those with isolating economic or environmental situations. A recent review shows that many autistic adults in particular face challenges in finding the connections they want and need. …

“The current Autism After 21 Utah study addresses these gaps and reveals some positive news about Utah’s readiness to build more neuro-inclusive communities to facilitate friendship and belonging, as well as some challenges that autistic adults are currently struggling with in social relationships and finding resources.”

We asked authors Sumiko Martinez and Ann Carrick to share more thoughts on how to build more inclusive communities, workplaces, professional offices and friendships.

Their interview, conducted via email, is below.

What are some elements of an inclusive community for autistic adults?

Sumiko Martinez:
To really build neuro-inclusive communities, we need to re-think multiple aspects of community—physical buildings and environments, systems and resources, socio-cultural practices, etc. Some examples of inclusive elements of a physical environment could be placing communication boards in public parks for folks who don’t use spoken language, building sensory-friendly rooms into buildings where people can take a break to decompress and regulate, or quiet & dimmable lights throughout a workplace.

In terms of structural resources, we can do a better job of re-thinking our processes. If someone needs affordable housing resources, can they navigate the system through executive function struggles, sensory overwhelm, difficulty wayfinding, etc? Streamlining processes so we aren’t collecting the same data at multiple points, making sure government and public buildings have good wayfinding signage to get to the right offices, and training staff to work with autistic adults are all great places to start.

For socio-cultural practices, there are a lot of ways to normalize neuro-inclusivity. Encouraging fidget toys during meetings, knowing and supporting the value of repetitive movements for self-regulation, and welcoming communication styles that don’t necessarily conform to neurotypical/allistic norms are some examples of ways that we can start to bring about change in our communities. 

Participants in our study indicated that neuro-inclusive housing, belonging & friendship, and recreation opportunities were the highest unmet needs. So those are good places to start incorporating those inclusive elements to make a difference! 

What are some elements of an inclusive workplace for autistic adults? Of an inclusive service provider's office? (These questions can include both physical elements and human ones.)

Sumiko Martinez:
I love this question! There are so many things we can do to address this. Many of them are quite low-cost to businesses and organizations, as well. Education is a major thing—making sure that leaders and employees at all levels of the company have training on neuro-inclusive practices and ways to work side by side with autistic staff so they can be fully successful.

Many organizations have Employee Resource Groups (ERGs) where staff can gather around shared characteristics - an ERG for neurodivergent employees can be a powerful tool for making sure people have a safe space to talk and share concerns and build camaraderie.

There are also a lot of unspoken social dynamics in a workplace which can be difficult to navigate; making expectations explicit and clear is really important (and really benefits everyone in an organization, not only autistic folks). Elements of the physical environment can also be adjusted. Having sensory-friendly elements in workspaces, and a designated quiet room to recharge, can be very helpful.

Flexibility is also a big one! Autistic employees may have slightly different needs for them to be successful. Wherever it’s possible to offer flexibility in scheduling, workspace, or location, that can be really beneficial as well. One of the interview participants talked about how hard it was for her to be forced to quit a job when that would not make any accommodations for her sensory needs, and the lack of accommodations caused a health crisis for her. It’s also a loss of talent for employers - she said that if she’d been able to work a hybrid schedule, or move to a corner cubicle with a little less chaos, she would still be working there! But an inflexible culture resulted in the employer losing out on her analytical skills and talents. 

How can individuals be better friends to autistic adults?

Sumiko Martinez:
A lot of this just comes down to recognizing our shared humanity. Based on our research, we recommend several practices.

First, acknowledge and directly work with discomfort and uncertainty that come up when you’re in a social situation where you are uncomfortable - practice deep breathing, move your body to help soothe your nervous system, and even say “I notice that I’m uncomfortable because I don’t want to say something wrong and offend you” (if that’s what you’re feeling, of course).

Second, prepare for deep listening. Neurotypical/allistic [non-autistic] conversation norms might not feel good in friendships with autistic folks, so be open and curious and non-judgemental about other ways of communicating.

Third, question your own assumptions. Many of us carry implicit biases and assumptions about disability, autism, and intellectual/developmental disability that we are not aware of. If something rubs you the wrong way, instead of getting defensive or upset, dig deeper and ask why?

Humans built society into the shape it currently is now, and that means we have the power to change it for the better. And finally, many autistic adults who participated in our research expressed concerns and shared experiences about being taken advantage of by people who are just pretending to be their friends. Friendships can thrive from a place of mutual interest, enjoyment, and respect - but both parties have to reciprocate! 

Was there anything in your research findings that surprised you?

Ann Carrick:
One data point that surprised me was the small percentage of people that strongly

disagreed with autistic adults having gainful employment opportunities. Even though a majority agreed with the statement, there needs to be more research on why some may have strong opinions in the other direction and what is motivating that.

It was also surprising that over a quarter of respondents did not feel that they had an influence over how autism-friendly their community was. This information shows that there is a lot of room for improvement with educating about the power of advocacy and what individuals and organizations can do to be more inclusive.

Sumiko Martinez: I agree with Ann; that was very unexpected for me as well. I was also very pleasantly surprised by how often autistic participants in this research talked about the tremendous impact that a single person had made in their lives.

One person talked about how pivotal it was when the high school basketball coach took a chance on him and let him on the team, and another participant spoke about one co-worker at their new job continually reaching out to them and offering social inclusion. Another person talked about a friend she feels totally comfortable with, because that friend is unfazed by her sensory needs and things like needing to take a break and lie down if they go for a walk. Seemingly small behaviors can have a profound impact, and it’s an encouraging reminder for each of us to aim for more of those small moments of connection! 

Were you able to reach any conclusions about the interplay between the isolation that sometimes comes with autism and mental health? I guess I'm asking how much of individual mental health struggles would go away if the isolation ended.

Ann Carrick:
It can be tough to piece apart any one individual factor that influences mental health, especially with the autism community, where many life challenges are present that can contribute, such as unreliable housing, not enough support services, isolation, communication and/or other challenges, other diagnoses that may be present, not enough opportunities for achievement and personal growth, and more.

It really ranges from not being able to address some basic needs all the way up to higher life goals and personal meaning in life. We also did not look in detail at piecing these apart in our current research. However, we do know from the growing body of positive psychology research that one of the strongest predictors of wellbeing is our relationships with others. Other people matter, and our research shows that relationships are important to the autism community as well. While it would not remove any mental health struggles, it can often help to buffer them and also contribute to a sense of personal wellbeing.

What will the next research steps be? What answers are you hoping will come out, and when will the research be completed?

Sumiko Martinez:
The next steps are applying the research, and evaluating whether the community intervention is successful in improving community inclusion and decreasing social isolation. We are currently working on a scalable community intervention in one county in Utah, and will evaluate the pilot before expanding into other areas.

We have several other counties that have expressed interest in tackling neuro-inclusive communities, and we are really excited to see this research make it out to the world where it can be helpful to people. Along the way, we have also heard anecdotal stories about families being pushed to leave rural communities because of the extreme lack of services in some areas, and being displaced to urban areas. We’re in the early phases of a research project exploring that phenomenon as well. 

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