Autism Friendly Cities

How to Develop an Inclusive Community

Jennifer Percival

• Publisher: Productivity Press
• Year: 2022
• Print ISBN: 9781032028231
• eBook ISBN: 9781000589139
• Topic: Business
• Subtopic: Business generale
• Index: Business

Access. Inclusion. Diversity. All people deserve to be embraced by their community. Autism Friendly Cities: How to Create an Inclusive Community is the first book designed to guide city leadership and staff through the processes of training and evaluation, development, and implementation of an Autism Friendly initiative that will help you open your doors to everyone.

People with autism should be able to participate in all that is offered and facilitated by their city, including services, activities, events, and points of connection. Being an Autism Friendly City is not only socially responsible, it will improve engagement, outreach, economic development, and resident satisfaction.

1 THE WHY
Why Are We Here? Why Does This Matter?

DOI: 10.4324/9781003185369-1

When I was young, my ambition was to be one of the people who made a difference in this world. My hope is to leave the world a little better for having been there.

– Jim Henson

During the first year I offered trainings on how to be Autism Friendly, I did not include a PowerPoint slide on why the training was important or why I was there. In my naïveté, I thought it was obvious. I knew that as a society we were not doing enough. I knew that we were not doing the right things. I figured everyone else realized that as well, and that was why we were in a training room learning about what else could be done. I was wrong. Most people I came into contact with didn’t understand that there was an issue. They thought that large bathroom stalls and up-front parking were meeting or even exceeding ADA requirements and making their city accessible. What they didn’t recognize was that they were just scratching the surface of inclusion and disregarding entire segments of the neurodiverse population.

One afternoon I was speaking to a room of employees who worked for a government entity, a few who apparently were mandated to be in my training, and were not participating voluntarily. Three slides into my presentation, one of them raised a hand, and with a spitfire attitude, demanded to know why this information was necessary, and why she herself had to sit through it. I was surprised and a bit taken aback by the question. Didn’t everyone want to make the world more inclusive? Wasn’t everyone interested in how they could do their job better and in ways that opened doors to members of their community? My utopian ideals were challenged and I had to develop an on-the-spot response to her question. As I explained to her, I will describe to you in this section: why are we here learning about this group of people and what their needs are? Why does being Autism Friendly matter?

Why Am I Here?

A mother called me one day at work and asked me about summer camps options for her son with autism. We talked about various programs, including a soccer camp that was being offered by the city she lived in. After she reached out to them, she called me back. The program did not accept children with autism. She was saddened, frustrated, and discouraged. Why was her child not allowed to attend the same camp that the neighborhood children went to? Why wasn’t he allowed to play soccer with his friends that he attended school with? How could that be? They didn’t give the mother a thorough explanation, simply that they weren’t equipped for her son to attend. At that point, I picked up the phone and called the city. Their reason for not including this child was that the camp was not prepared to serve a child with “extra needs.” For me, that was not a reasonable response.

A young adult I was working with emailed me that he had recently moved out of this mother’s home and into an apartment of his own for the first time. He was excited about this step towards more independence in his life, but there was some confusion over who was supposed to pay the utility bills. He was told by the landlord that he needed to switch the water bill into his name. To accomplish this, he went to the local city office, which, he confirmed via phone, was the correct location, but when he arrived, there were many doors to the building, little signage, and once inside, he didn’t know where to go or who to talk to. After finally finding a staff person to ask for help, he was told to sign into a computer in the lobby and wait. When he approached the computer, there was a login screen with no directions indicating what to do. He was so overwhelmed and stressed by the process, he decided to go home instead, not transferring the utility account into his name.

An adult with autism came to my office to discuss employment options. She was interested in working as an art class assistant. We talked about the job tasks for that type of work and decided to look online for local open positions. We found one in a neighboring city, where they were hiring part time. She completed the application, submitted a resume, and was later contacted for an interview. During the interview, she struggled with eye contact and was required to verbally answer questions that she’d never heard or seen before. She felt stressed during the experience and did not clearly express herself. As a result, she did not adequately show her talents or explain her experience and ultimately did not obtain the position.

A group of families who have children with autism get together once a month for social experiences. They decided that for their winter outing they would visit the Santa Claus housed in a special area of the park in their city. They tried going during a weekday at a quiet time, but they ended up having a negative experience anyway. One of the mothers called me to share what happened. She said that the parking area was very near a lake and there were no barriers to keep the children from running toward the water. In their excitement to see Santa, one of the younger children ran from the car and had to be detoured from the water area. When they were inside the building, the decorations were beautiful, but the space, which was mostly wooden, was loud, echoed, and was filled with people. The line to see Santa was over 20 children long, and the wait was over an hour. There were no activities to do in line, and most of the children in their group were unable to wait that long. They were also overstimulated by the environment, and many children sadly went home without visiting Santa.

These stories, these experiences, of individuals with autism and their families, are frustrating, discouraging, and heartbreaking. It is essential that everyone has the chance to be part of the community: for a young person to go to summer camp, an adult to independently manage his bills, an individual to have a fair shot at a job, and a child to have a magical holiday experience. With a few small changes, a little education, and some thought, a city has the ability to include everyone in the opportunities they offer. The reason I do this work is to ensure you have the information and resources necessary to take action and make choices that have the potential to be life-changing for the residents of your community.

Chapter 1
The Good, the Bad, and the PR Nightmares

DOI: 10.4324/9781003185369-2

All the adversity I’ve had in my life, all my troubles and obstacles, have strengthened me … you may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you.

– Walt Disney

There are definitely cities, organizations, and groups out there that are doing a good job of creating accessible and inclusive environments, but there are also those that profoundly fail. This chapter will review what happens when you support expansive access and inclusion, and when you lack action in this area. It will also share stories of what happens when a group is required to be reactive due to a negative situation or because environments were created through a narrow lens. It is likely that some of the leaders who will pick up this book are doing so because they are managing an incident or issue and are looking to rectify the situation. Perhaps they feel they did everything right, but for some reason something still went wrong. Or, they did nothing at all, and are now being forced to address the consequences of that inaction. This chapter will showcase what happens when your approach is one of neurodiversity and inclusion. It will also examine potential issues when accessibility is limited and barriers remain, because the needs of specific populations are not considered. This section will teach you how to break down your organization’s needs, to help you gain insight, and to begin to shift the perspective. It is also for those in a situation where they need to ‘right the ship’.

The Good

There is a 30-second video I show when I train people on the Autism Friendly movement. The clip is a demonstration of low budget, high impact return on investment. In the video, a young boy with autism dreams of surfing. He is nonverbal and has high support needs, meaning he requires 24-hour supervision for safety and direct assistance for activities of daily living. He indicates to his parents, many times, through watching videos, gestures, and mirroring, that he wants to have a surfing experience. For the family vacation, they went on a cruise, and the ship had a surfing pool onboard. The pool utilizes high-powered water jets to simulate waves. Surfing, without assistance, would require abilities that this child did not have, and additional safety measures would need to be in place. Luckily, this cruise line was Autism Friendly, and they were able to make several small modifications, such as turning down the water pressure to make the waves less demanding, adding a specialized life jacket to the child, and increasing the staff, where one lifeguard helped move the child into the water, and another was already in the water and able to hold the child on a boogie board throughout the experience. The cruise staff involved had also received basic training about autism. These few adjustments, which required little time and minimal cost, allowed this child and the family to have an experience that fulfilled on a dream. The video has been shared widely, and not only do viewers frequently cry at the beauty of the moment, but they also admire the practices of the business and those involved in supporting this child’s experience.

The Bad

Unfortunately, there are many stories to share about what happens when things go wrong. There are news reports and articles that detail horrifying accounts of people with autism being so misunderstood that what might have been solved with a simple intervention or accommodation turned into a significant problem, or even a tragedy. There are situations when families tried to connect with a city for resources or services and were turned away, resulting in exclusion and even isolation, leaving an individual with no options or recourse. Other experiences, where it seemed like there could be a simple fix, or a strategy utilized, created negative moments for families, and in turn, cities. These adverse circumstances have the power to significantly negatively impact residents and can easily turn into legal and Public Relations nightmares for a city.

PR Nightmares

We’ve all watched the news and heard about a city, town, or company that is being publicly admonished for making a poor decision. When there are negative incidents that occur, especially if a person with a disability is harmed or experiences discrimination, the public responds by making a judgment about that organization. This may mean loss of resident engagement, economic downturn, or even in-person protests and outcries on social media. The image of the city becomes tarnished or tainted, and it can take years to reestablish trust with the community.

Education is at the core of the solution to PR nightmares, as both a preventative and a restorative method. It could be that an employee simply didn’t have the knowledge or expertise to handle a situation appropriately, and that is what caused an issue to occur. Or, a staff person did have information but did not have the know-how to implement their understanding of ways to support a person in the moment. Either a lack of thorough staff training, the need for more resources, or how an organization’s values may not align with serving the entire community with inclusivity can cause these situations to occur. Once these incidents happen, and are made public, a city, is forced to do damage control. This is often handled by backtracking and promising to train or retrain employees, or to add additional components to professional development curriculum that simply wasn’t there in the first place. Frequently, this also includes a change of branding or a new values’ statement that helps to cover up the problem, with the goal of resetting the tone for the future and calming the public’s response. Even with these fixes, the reputation of an organization can be tarnished long-term. Being proactive to prevent a problem is much more effective than managing it after the fact. Being exceptionally honest and genuine when conducting a self-analysis of the way in which your city functions, where there are strengths and weaknesses and how improvements may be made to reduce barriers and increase access, is necessary to develop a plan to move your city toward being neurodiverse and Autism Friendly. I suggest that this is the place to begin your journey. Start here, with reflection, analysis, and a goal to gain insight. Discussions with your team can be conducted in many ways: individually, in groups, managerial levels, departments, or by utilizing focus groups. Set the tone of the space to encourage staff, to share their experiences and express their feelings about your city. The set of prompts, Reflection: The Good and the Bad is designed to provide a framework, start the self-evaluation process, and encourage conversation.

*Reflection: The Good and the Bad

Utilize the following prompts as conversation starters:

• Share a positive story about a t...

Table of contents

• Cover
• Half-Title
• Title
• Copyright
• Dedication
• Contents
• Acknowledgments
• Author Bio
• Introduction
• Part 1 The Why: Why Are We Here? Why Does This Matter?
• Part 2 The Who: People with Autism, Leaders, and Community Partners
• Part 3 The What: Creating Change
• Appendix: Implementation Examples
• Index