NeurodiverseMKE: Moving from Awareness to Access

It’s April 2, 2019. Do you know it’s World Autism Awareness Day?

Chances are if you’re reading this, the answer is “of course I do”. Due to the efforts of several national and international autism advocacy organizations, it’s safe to say awareness is at an all-time high during the first few days of April.

But what about the rest of the year? My experience tells me awareness continues at an all-time high because the prevalence rate of autism is at an all-time high. I’m often asked to speak to public groups about the Islands of Brilliance story, and each time I start by asking the audience a question. How many of you know an individual on the autism spectrum, or have a family member or friend who has a child living with autism? Without fail, nearly every hand in the room is raised. It’s safe to say we’re approaching awareness saturation.

That’s not to say there isn’t important work still to be done regarding awareness. Awareness now needs to manifest itself in concern about and well-informed interest in the needs of individuals and families living with autism.

Let’s begin with a frightening reality. With the instance of autism in the United States currently estimated at 2% of the population between ages 3 – 17, the economic impact is projected to reach $461 Billion to the U.S. economy by 2025. A major contributor to the economics is the estimated 90% unemployment/underemployment rate for young adults on the spectrum. Employment and the subsequent independence it provides is something every parent with a neurodiverse son or daughter worries about and struggles with from the moment a diagnosis is made.

The hidden day-to-day reality is that too often families with children on the autism spectrum are also beset with feelings of isolation. The larger community frequently doesn’t understand the behaviors, differences, and challenges that individuals living with autism face. A common story parents share is rarely having their son or daughter invited to a birthday party. Many times these same children cannot actively participate in team sports with their neurotypical peers. The interests they do have generally are seen as odd and repetitive. Exclusion becomes pervasive, affecting the entire family. Families face a lack of options, which only magnifies the feeling of being left out and forgotten.

Yes, awareness and empathy for the challenges families face is very much needed. But we also need to start shifting the conversation to access, as access is the pathway to solutions to many of the issues facing a growing neurodiverse population.

Access—where to begin?

The work to be done is daunting, as the needs are myriad and pondering them can lead to a head-spinning feeling of powerlessness. A systemic approach is needed, one comprised of many citizens and organizations working on different aspects but all pulling together in the same direction.

The following is an overview of the areas that Islands of Brilliance is involved with—either as an organization or as part of a larger initiative—in order to increase access for the neurodiverse community.

Self-directed learning

Since the very beginning, this has been at the heart of an Islands of Brilliance workshop. The secret sauce is allowing students to choose the subject and the story they want to tell, and allowing them to explore the means by which to tell it. Project-based learning affords each of our students the opportunity to employ research, experience collaboration, face problem solving and decision making, practice communication and public speaking, and work within time management constraints.

We’re currently looking at ways to evolve our self-directed learning model. Brilliant Sandbox will enable us to partner with local school districts to allow neurodiverse students and their peers to participate during school hours in specially designed IOB programming on a monthly basis. We’re eager to see how the confidence and camaraderie built off-site can spill over into a traditional school environment.

Better transition planning

We view transition as an action in addition to a plan. With the launch of our Digital Academy in January 2019, the community can begin to see the creation of a neurodiverse talent pipeline as early as age eight. Our strategy for this early intervention employment model builds off the concepts of early intervention education. Whether a student attends a one day Brilliant Guest Artist workshop or a weeklong Digital Academy bootcamp session, the norms of the learning experience mimic the culture and process of the digital and tech-centric workplace. Both Director of Education Margaret Fairbanks and Director of Integrated Learning Amy Mason have begun testing ways to work with parents, school transition coordinators, and case managers to determine if a student’s requisite skills and long term goals align with the rigors of IOB’s Digital Academy.

Above: Digital Academy bootcamps provide transition options and help build the neurodiverse talent pipeline.

Above: Digital Academy bootcamps provide transition options and help build the neurodiverse talent pipeline.

Employment

Islands of Brilliance is excited to be convening a dynamic group next Thursday, April 11th that we’re calling NeurodiverseMKE. Funded by the Greater Milwaukee Foundation Ideas to Action initiative, we are gathering a group of progressive, collaborative, and action-oriented individuals and organizations in the community. The goal is to find ways to accelerate solutions to transition and employment opportunities for neurodiverse individuals. Best Buddies, Mind Shift, Northwestern Mutual, Disability:IN, UW-Whitewater, The Ability Center, Prevailing Pathway, and DSAW will all be represented at the meeting. Transition, workforce development, employment, and transportation are all sure to be topics of conversation and subsequent action.

And just on the horizon for IOB is the launch of Brilliant Studios. Our partnership with Light the Hoan and UWM’s Immersive Media Lab on a Virtual Reality project, and the recent collaboration with 88NINE Radio Milwaukee give a sneak preview of this model, in which Digital Academy candidates will gain work experience in an integrated apprentice-style model. We can hardly wait to get going, as this represents the full realization of the creation of a neurodiverse talent pipeline.

Housing

We are honored and excited to be part of a task force organized by Barbara Wells, Shari Malofsky and Linda Bader to address potential projects for Intentional Living Communities for adults with developmental and intellectual disabilities. A coalition of over 20 individuals and organizations met for the first time in February, with our next meeting scheduled for April 9th at Bader Philanthropies. We’re eager to see how multiple stakeholders and groups can organize to create better access and outcomes for long-term housing.

Community Engagement

January saw the successful launch of our Brilliant Breakfast Club (BBC), a monthly program designed to foster pathways toward independence for young adults 18+ on the autism spectrum. Our cohorts of participants have the opportunity to join monthly breakfast gatherings at rotating local restaurants, then transition to a guest artist workshop using public transportation. The entire experience is supported by undergraduate occupational therapy students from local universities. Our participants build self-confidence around important daily living skills after rehearsing routines such as meal ordering, money handling, public transit routes and building social connections with peers within the wider community. It’s already created access for participants that is carrying over into how they view their own mobility within the community.

The interest from potential partners for BBC is high. We anticipate future programming to involve outings to museums and the performing arts. We’re also very proud to have received support for this important new initiative from the Mary Nohl Fund and the Green Bay Packers Foundation.

Acceptance

Islands of Brilliance would not be what it is without the monumental support and commitment of our volunteer community. While our gratitude can not be measured, the relationships being developed are mutually beneficial. Acceptance—and how it relates to inclusion and the needed evolution of HR practices to be more neurodiverse friendly—is being paved by the perception change rooted in the volunteer experience of our workshops. Consider the following feedback from a recent IOB volunteer survey:

“Witnessing the creative hunger, desire to learn, playfulness, curiosity, and uncovering of endless possibilities is something we as a community can all learn from.”

Voice

On April 26th, 2019 we’ll be hosting our third annual Autism, Art, and Design exhibition during the Historic Third Ward Gallery Night. Last year the event drew close to 200 attendees to not only see the exhibited work, but to witness live creation in both art and STEM environments by featured IOB students. We look forward to opening the doors to the greater community to highlight both the abilities and the trusted space that defines Islands of Brilliance. Combined with the joyous celebration that is Colors & Chords, the voice of neurodiversity has increasing opportunities to be heard loud and clear.

This is by no means a comprehensive list of the access points that need to be addressed. For example, access to early identification and healthcare in underserved communities is a huge issue. As an organization it is a concern, but falls outside our scope to address. Transportation is another problematic issue—beset by inflexible, conventional solutions—but one we hope can be dealt with more effectively through collaborations within the NeurodiverseMKE initiative group.

As a parent of a neurodiverse young adult, I am happy to say there are literally hundreds of people engaged in helping create a community of neurodiverse inclusion that we can proudly call our own. Milwaukee is a community where increased access is resulting in a better quality of life for everyone involved.