The Architecture of Change: The Madison House Autism Foundation
Imagine a space filled with sunlight, a modern cathedral of glass. The unexpectedly lovely interior is part of the Johns Hopkins University Montgomery County campus in Rockville, Mayrland, and from April 2 through June 1, 2012, it is also the home of an art installation sponsored by The Madison House Autism Foundation entitled, “Autistic. Artistic. A Life Ahead.” In the words of JaLynn Prince, co-founder and president of The Madison House Autism Foundation, “The thing that was so remarkable about [the opening of the show] was that people didn't want to leave. They had to usher us out, because the building was going to lock electronically, and we would have been shut in for the night!”
I can understand the sentiment. Though Prince and I have just a few minutes to walk through the installation, I, too, am reluctant to depart. Prince's fine arts background comes to the fore as she describes each of the artists' works on display; her stories make the soaring space seem more personal. The extra space was necessary, as the opening night of the exhibit had approximately 150 people filling this area. Guests included artists on the autism spectrum, parents, autism advocates, and local community leaders. The exhibit featured original paintings, mixed media pieces, and jewelry by autistic artists.
The “Autistic. Artistic. A Life Ahead.” exhibit can be viewed as a small-scale model of what the Madison House Autism Foundation hopes to achieve through their work. The Foundation’s task is twofold: to raise awareness, and design and build new, supportive societal structures for individuals with autism and their families.
The Seeds of Change
The Madison House Autism Foundation's mission for change is far-reaching, yet like so many nonprofits, the seeds were sown at home. In Prince's words, “The Madison House Foundation began because we had a son [Madison] on the spectrum. We wanted to step forward with our lives' experience to help [others]. We'd originally thought we'd do a school, but then, when we did a survey, we found that adults on the spectrum is an area that's been highly neglected. It also happens to coincide with the age of our son; he's graduating from high school at the age of 22.”
Prince's initial idea for a school for individuals with autism has transformed into a kind of school for society. The Madison House Autism Foundation seeks to provide hope, guidance, and effective solutions for adults with autism and their families. The emphasis is on providing choices, creating a world in which adults with autism are welcomed and included in every area of adult life. Begun in 2008, the Foundation focuses on projects that, in Prince's words, “...could bring great peace to parents and grandparents [of adults on the spectrum]. We love to have [family members] channel energies in our direction.”
As families like Prince's know, simply trying to understand the existing system of services for individuals with autism can be a daunting challenge. As Prince says, “We're fairly informed people, and we've found the difficulties of navigating the [government] system, and have encountered many across the country who have had similar difficulties. People are concerned with what's going to happen to their adult children when they're no longer around. We're working to formulate a plan where individuals on the spectrum can have long, productive lives.”
As such, the current art installation connects to the Madison House Autism Foundation's mission in that it is both a celebration of individuals and a showcase of talent. It is an open door for the possibility of career options. This balance of the emotional and the practical is one that the Foundation strives to strike. Though Prince and her colleagues were motivated to begin the Madison House Autism Foundation because of their personal relationships with individuals on the spectrum, they make it clear that the work that they do looks beyond individual relationships and into the realm of the abstract. As Prince says, “We're not a care provider—we're kind of an architect. We're trying to draw up plans to see what the building [the structure that supports adults on the autism spectrum] can look like in the next 60 years. We use the idea of 60 years, because from the age of 21, it's 60-plus years in a typical lifespan.” Given the number of young adults with autism who are transitioning into this “next phase” of their life and aging out of support programs, the need for new societal structures is clear.
Person-Centered on a Larger Scale
Why choose to be an architect of the abstract given that there are such tremendous, concrete day-to-day needs at hand for adults on the spectrum? Prince and her colleague Adrienne McBride know firsthand that parents and caregivers expend a great deal of energy simply getting through each day. Prince recounts the period when her son Madison went to camp for the first time two summers ago. In the hushed, awed whisper that caregivers know so well, she says, “We had six weeks! [My husband and I had] six weeks of going out whenever we felt like it, of choosing a restaurant by ourselves ...” Even as her organization focuses on larger questions, Prince recognizes the importance of smaller-scale ones, such as practical support and respite for full-time caregivers.
Likewise, McBride tells me, “That's the main thing I see across the board, when I talk with parents; they are tired. And I don't mean tired as in simply physically tired, though that's true as well … I mean that they are ...” She trails off, searching for the right phrase.
“Deep-down tired? Soul-tired?” I suggest.
“Yes, exactly!” she exclaims. As a sibling of a young man with autism and a former full-time caregiver for adults with intellectual disabilities, I know just what she means. In that spirit, I can see how a group of people devoted to the larger questions of autism in our society offers parents and caregivers a ray of hope (and a modicum of relief) amidst the myriad of daily struggles they face.
Given the scale of their work, Prince is careful to note that the Madison House Autism Foundation continually seeks input from parents and caregivers. Recently, for example, the Foundation welcomed three roundtables of parents to offer feedback on their newly redesigned, interactive website. When I ask whether the Foundation's approach arises from a person-centered perspective, Prince says, “We want to be person-centered in the sense of looking at what is happening across our country. We need to provide information so parents don't feel as alone. We want to connect with a whole lot of other people across the country, putting people together, in a gigantic dot-to-dot.”
In that spirit, the Foundation is working on several significant projects. First, the organization is involved in adult autism research. Says Prince, “We still don't have enough research on what happens to the adult with autism as they age.” Next, the Foundation is collaborating with universities to formulate educational programs and curricula for individuals on the spectrum, in response to the growing need for continuing educational programs for adults with autism. Prince speaks with excitement about working with universities to “identify professions that have never been identified before.” The Madison House Autism Foundation also directs families to financial planning and recreational resources, helping to answer questions related to housing. They continue to evaluate models from communities across the country that include farms, houses, apartments, and other community-based care models.
Prince mentions several practical societal shifts that need to occur for the world to fully welcome, include, and support adults with autism. These changes include advocating for medical school curricula to educate their physicians on the needs of individuals with autism. As Prince says, “If somebody can't stand a blood pressure cuff, loud noises, florescent lights, changing into a [hospital] gown … it sounds trivial until you're with someone who is having a total meltdown, someone who needs medical care and can't get it because the people who are trying to give care to that individual don't know what to do!” Thus, the Madison House Foundation is also working to inform and educate first responders in their local community. Likewise, Prince suggests changes such as having “quiet areas” in Emergency Rooma to help individuals with autism dealing with sensory overload, and limiting the use of sirens and flashing lights unless they are absolutely necessary.
The overarching theme to the Madison House Autism Foundation's work is that of structure—they hope to help articulate what the next generation of supported living might look like. And, in collaboration with other thought leaders in the autism world, Prince says, “We're going to have to call in a lot of good people to help reinforce that structure.”
Support for Families
Additionally, the Madison House Autism Foundation has begun a Parents Network, which Prince calls “a fledgling project.” The Foundation is in the process of editing videos of parents detailing their experiences, which will serve as encouragement and support to parents across the country. In the past, Prince says, “We took a series of stories that parents had sent us to the White House, and they ended up on some important desks. We did it to put a real face on what autism is.” Likewise, the Foundation's new website features an area for parents, siblings, caregivers, and individuals on the spectrum to share their stories. Future projects include a video series from a writer who is a parent of a son on the spectrum. In Prince's words, the series will be, “… a real-time view of what it is like to have a son graduate from high school who is on the spectrum, and what he will be facing. [The writer is] going to be very open about the recommendations that are made to her, the ones that succeed and the ones that fall on their face. Every few weeks, she'll write in in real-time, so other parents can see what [they're] going through.”
When I ask Prince for her recommendations for parents of individuals on the spectrum, she suggests that parents, "… get a circle of friends together and talk to them very frankly—and maybe do this every couple of years, so they know each other, they know your child—and say, 'I don't want it to fall on any one person, but if something were to happen, would you be part of our son's community? Something as simple as sending a card, or as big as looking out for his welfare.' Nothing makes a parent happier than to know that somebody thought of their child.”
Other practical recommendations from Prince include investing in wise financial planning early on; looking into trusts; and bringing people who can be trustworthy caregivers. On the whole, Prince counsels parents, “Be informed but trust your own instincts.”
Ongoing Challenges, Dreams for the Future
The challenges that The Madison House Autism Foundation encounters are tied to those faced by parents and caregivers. Both Prince and McBride mention the difficulty of engaging parents and caregivers in conversations about the future, given the time and energy it takes for caregivers to work with the immediate things at hand. As Prince says, “When a parent has had an autistic child, and they've had to worry about bedtime, foods, school … how do they look to what the next phase is going to be? When parents are facing that lack of [societal] structure in addition to everything else, it's really challenging.”
As such, a major part of the work of The Madison House Autism Foundation is to help families and individuals to move closer to a life of fulfillment for each individual. As Prince says, “I believe that the biggest tragedy in the world is when human potential is not realized. This is whether someone's on the spectrum or not. [I believe in] the idea of helping those that are on the spectrum reach their fullest potential, whatever that may be.”
Realizing potential is a challenge in a world where autism services are insufficient and limiting beliefs abound. Even so, Prince sees the "Autistic. Artistic. A Life Ahead.” show as a part of what will transform our world. “The art show brought people together; you could see misconceptions almost shedding off of people's shoulders. It was an experience understanding more about autism, and themselves in relationship to autism. If I could have a national art show, and salt and pepper it with conversations about autism, the world could relieve itself of a lot of fear and move forward in a positive way.”
“It Would Be Great for Us Not to Have to Exist!”
When I ask Prince if she considers the Madison House Autism Foundation a replicable model for other communities, she encourages a larger view, and arrives at a surprising conclusion. In her words, “If there's other Madison Houses that's fine, but why don't we all define what we're doing, do the best job we can, and then fill in all the gaps? Let's learn from each other, and then we can move things forward faster. If we can have this national conversation—if we can get institutions, legislation, universities all working in a good direction for adults with autism—ultimately, it would be great for us not to have to exist!”
A nonprofit that looks forward to a future in which it might not need to exist? An organization that's both person-centered and ideological? The Madison House Autism Foundation seems a study in contradictions, yet this seems fitting for an organization that deals with the paradoxes of autism on a daily basis. This being the case, when I ask Prince about the best part of her work, I'm not surprised by her answer: “Having quiet moments, looking at my son, and thinking that maybe the future will be better for him and the other Madisons out there.”
The Madison House Autism Foundation welcomes family involvement. Please visit the Parents page of its website to learn more.
The "Autistic. Artistic. A Life Ahead." exhibit is on display at 9605 Medical Center Drive, Rockville, MD 20850 from April 2 through June 1, 2012. Visit The Madison House Foundation website for more information.