Museum — The Inclusion Issue
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Full Spectrum
Lisa Jo Rudy

Addressing the Needs of Kids with Autism

An average sixth-grade class is touring your galleries. Most of the children are only mildly interested, but one or two are not only intrigued but extraordinarily well informed. They've been to your museum multiple times and memorized the labels (and get quite upset if you've made any changes). They walk next to you on the tour, ignoring their classmates and interrupting you frequently in their rush to share their knowledge and passion.

Visiting from a "special "school is a group of students who have odd behaviors, make strange loud noises, respond intensely to loud noises or bright lights in the galleries, or appear to be in their own world. Some teachers and aides are walking hand-in-hand with their students to keep them focused on the tour. These children are obviously severely disabled.

Meanwhile, a youngster visiting the museum with his family won't leave an exhibit even after his siblings are bored, can't bear the loud noise in the multimedia theater and grabs all the toys in the discovery room. And at a workshop for young teens, one girl just doesn't fit in. Perhaps she's too loud or too quiet, too clueless or too engaged. She didn't quite understand your instructions and wandered off for no apparent reason. Even when you went out of your way to include her, she just didn't seem to respond. Chances are, you've met many kids like these.

Chances are, you've met many kids like these. Most could be diagnosed with an "autism spectrum disorder. "Before the early 1990's, autism –a developmental disorder that causes impairment in communication skills, social interactions and behaviors –was considered a severe disability characterized by extreme symptoms. Now, thanks to changes in diagnostic criteria, autism is considered a spectrum disorder, meaning that you can be a little autistic or very autistic. People with autism may be very bright or intellectually challenged; very verbal or without meaningful use of spoken language; very interactive or utterly isolated. They might over-react to sound and light or not respond at all. They might have serious mood and anxiety issues, or be unusually fearless and upbeat. The term "Asperger syndrome "describes individuals at the highest end of the autism spectrum, while "autistic disorder "refers to people with the most severe symptoms. The expression "when you've met one person with autism, you've met one person with autism "is absolutely correct!

When most of us were growing up, the word "autism "was rarely heard outside a clinical setting. Today, as many as one out of 90 children receives an autism spectrum diagnosis. Twenty years ago, few of us knew anyone with autism, and children with autism certainly were not included in our schools. Today, however, many children with autism are included in typical classrooms. And as these young people are growing up, the number of teens and adults with official autism spectrum diagnoses is ballooning.

Why are the numbers so high? The answer is unclear, and there's plenty of debate over different theories. According to many major researchers, however, the number of people with "autistic "symptoms hasn't actually changed very much. What have changed are our diagnostic criteria, our academic record-keeping systems, our awareness and our desire for inclusion.

There are obvious reasons why people with any sort of disability should be made welcome at your museum. To begin with, there's your mission … and the Americans with Disabilities Act. There's also your desire to reach out to the broader community and to ensure equitable opportunities for all. And, not to put too fine a point on it, there's the opportunity to write and win some significant grants (or request and receive significant individual gifts) in support of accessibility programs for children and adults with disabilities.

But these generic reasons are just the tip of the iceberg.

While people with autism may have very little in common, all of them share difficulties with verbal and non-verbal communication and social interaction. Even the most loquacious individual with Asperger syndrome may take idioms literally and is likely to misinterpret or misunderstand instructions or non-verbal cues. In school, every class, test and social interaction depends upon precisely the skills that people with autism lack. In a museum, however, conversation and social communication can often take a back seat to hands-on, visual, aural or interactive discovery and learning. In other words, children with autism may learn more and better in an informal museum environment than in a school setting.

People with autism might experience challenges in the "real "world of school, work or public interaction, but they often have a range of passions, talents and aptitudes. Too often, schools focus on remediation at the expense of talents and interests: Children with autism spend their school days learning to be as "typical "as possible. Museums, though, are all about passions and unique abilities. The child whose fascination with outer space sabotages his English grades could thrive and even take a leadership role in a planetarium setting. The youngster whose artistic abilities far outshine her ability to converse with peers could develop her talents, interests and understanding of visual media in an art museum setting. The possibilities are endless, given the right supports, opportunities, training and willingness to learn on all sides.

In short, museum professionals have the tools and capability to provide people with autism with extraordinary experiences available nowhere else in the world. These are people for whom museums, in many cases, are a natural destination. But neither they nor the museum community necessarily know it yet.

Before actively inviting families and groups with autistic members to your museum, you need to have a good sense of just whom you're approaching and what you plan to offer. To begin with, you'll need to consider the question of whether you're interested in providing access to the autism community or whether you're aiming for true inclusion.

Access is relatively simple and low in cost, while true inclusion requires a considerable commitment to training, program development and more. A museum that is accessible to individuals with autism may open its doors to the autism community during off hours, or it may provide tools and resources –such as visual schedules, preview materials and dedicated quiet spaces –so that individuals with autism can visit the museum without undue difficulty. A museum that actually includes individuals and families with autism, however, will need to modify programs and exhibits, create accommodations and supports, train staff and work with the autism community to create an autism-friendly environment.

Whether you plan to create accessibility resources or provide training and alter programs, you'll need to know where the necessary funding will come from. If you're striving for true inclusion, you'll need to determine whether you will incorporate that philosophy into your entire institutional agenda or create discrete "inclusive "exhibits, programs and events. And once people with autism come to and have a positive experience at your museum, will you continue to offer them opportunities to learn and grow with you? Or are you simply offering an open door?

If you're considering inclusion, you'll also need to decide whether your museum is truly interested in making serious modifications to include low-functioning individuals on the autism spectrum. You may prefer to reach out exclusively to higher-functioning individuals who can, with support, be fully included in your existing programs

Many museums invite families with autistic members into their exhibits during openhouse- style events at times when the museum would ordinarily be closed. The McWane Science Center in Birmingham, Ala., for example, offers special autism family nights to community members, partnering with local autism organizations. The Garden State Discovery Museum in Cherry Hill, N.J., runs a more sophisticated version of an open house event called "Open Arms. "Grant funding has allowed the museum to invite autism experts and resource people to attend and provide a value-added element to the experience.

Such special events have several great advantages for both museums and families. They cost museums very little but bring in a fair amount of revenue. They require no one –staff or families –to spend a great deal of time or money preparing for the event. Families with autistic children can enjoy exhibits on their own terms without fear of being stared at or judged by other visitors, and with relatively little risk of being asked to leave. People of all ages can go through the galleries at their own pace. Higherfunctioning youngsters can explore and discover, while lower-functioning children may engage at a simpler level.

This type of access program is certainly a positive step in the right direction, and it can become a big seller. Families with autistic children tend to connect through support groups, listservs and other means, and once a core group decides an event is worthwhile, many other families may follow suit. It's always pleasant to meet up with friends and peers in a safe, family-friendly setting.

While autism-only events are by far the most popular form of museum access, other types of access programs are popping up around the country. In Naperville, Ill., for example, the DuPage Children's Museum offers parents of children with autism a photo-tour of museum. This makes it possible for youngsters with autism to familiarize themselves with the experience in advance; for children with autism, preparation is key to a positive experience. The Adventure Aquarium in Camden, N.J., has created autism access materials, including visual planners and hands-on materials, as part of a grant-funded pilot program.

Can children, teens and adults with autism fully engage with museum exhibits and programs along with the rest of the world? The answer is a qualified yes.

When a person is diagnosed with Asperger syndrome or mild (highfunctioning) autism, clear communication about rules, expectations and schedule –together with specific accommodations – are key. Such efforts, along with employee training and providing a few extra staff members for support, can make all the difference. Some of the simplest and most effective accommodations are free or nearly free: providing visual preview materials to prepare youngsters for events and programs; placing children with autism at the front of the room or including them as "helpers "; inviting parents to serve as aides during workshops; providing a quiet room for families whose child is feeling overwhelmed.

One of the challenges of successful inclusion for children with high-functioning autism is disclosure: Many parents choose not to mention their child's autism (often out of fear of being excluded from the program); if you don't know a child is autistic, you won't be prepared for her special needs. Regular communication with leaders of autism support groups in your community can overcome such concerns; families with autism tend to be in close contact with one another and will spread the word.

When the person with autism is lower functioning, inclusion may or may not be as straightforward. Museum staff may need to create a specially designed inclusive program that meets the needs of individuals with autism, or even customize experiences to fit particular autistic profiles. Perhaps most difficult, museum staff will need to evaluate the impact of autistic behaviors on their regular visitors. Loud noises, aggression or other disruptive behaviors can be very challenging.

Despite the potential difficulties, many museums do include children, teens and adults with autism in a wide range of programs, including overnights, workshops and even volunteer corps. The Science Museum of Minnesota in St. Paul, for example, has developed a policy of including children with autism in its camps and involves parents in developing the accommodations necessary to make inclusion work. In neighboring Minneapolis, the Walker Art Center is training its Education and Community Programs Department's tour guides to work with people with autism. In California, the Palo Alto Junior Museum and Zoo has two volunteer groups of adults with autism or developmental disabilities who come once a week to clean the zoo or prepare food for the animals. The Academy of Natural Sciences in Philadelphia has a policy in place to include and support teen and young adult volunteers with autism in their galleries and research labs.

Often, generalized programs that include individuals with developmental disorders can work well for people with autism. The key to success, in this case, is small groups, high staff-to-visitor ratios and careful selection of activities to avoid a great deal of emphasis on verbal interaction. The Jewish Museum in New York, for instance, offers specialty tours for families with developmentally disabled members, as well as educator workshops for special education teachers. The Metropolitan Museum of Art in New York has a long-standing Discovery Tour program that takes individuals with developmental challenges and their families through the galleries and offers hands-on educational experiences.

In just the past few years, interest in including individuals with autism spectrum disorders in museums has grown – and so has grant funding. A staff-training and program-development project funded by the Institute of Museum and Library Services is now underway in Boston, and corporate-funded autism access events are taking place across the country. Google "autism museum "and you'll find dozens of such happenings. If you're considering access or inclusion for your museum, you're in the right place at the right time.

Lisa Jo Rudy is a museum writer and consultant based in Falmouth, Mass. She writes and edits the about.com "Guide to Autism "(autism.about.com), a New York Times Company website, and is the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most of Community Activities. Rudy is presently working on a guide to autism inclusion for community organizations and on grant-funded inclusion projects at museums in New England and the Mid-Atlantic.

TOP TIPS FOR ACCESS AND INCLUSION

In a perfect world, museums would have the time, money, staff and dedication to support every individual interested in touring its galleries or taking part in its programs. Short of an ideal situation, however, there are low-cost, high-impact techniques for making your museum more accessible to, inclusive of and involved with the autism community.

• It's important to set the stage for a successful visit. You can provide preparatory materials such as videos, photos and maps so that parents and teachers can plan their visits and create visual schedules for their autistic children. These can be provided as downloads from your website; be sure visitors know they are there. You might suggest or set aside certain times for visits when the museum is uncrowded, or recommend or create exhibits that are relatively low key in terms of noise, light and crowd levels. Consider offering a special entry fee or membership option that allows families to come and go as early and often as they like. A clear, printable list of rules and behavior expectations (ideally, including photos) is helpful, as is an up-to-date museum restaurant menu that lists a variety of choices including wheat- and dairy-free options for those who believe that such a diet can help people with autism.

• Once at the museum, parents or teachers should know where they can find a quiet room or space where they can take a child with autism who has become overwhelmed or has begun to tantrum. Mark the room prominently on maps and be sure there is a closable door. If possible, equip the room with a video player and a selection of favorite children's videos, along with simple toys such as Legos and sensory objects such as squishy balls.

• Train your staff to ask families whether they need any special services or supports as they tour the museum. Museum employees should be aware of any services you've created for autistic visitors and know how to offer them rather than reacting in a loud or angry tone to odd or unexpected behaviors.

• Finally, communication is key. Connect with local special needs parent groups and your area's Autism Society chapter to let them know of your offerings and to ask about their needs and concerns. Open the doors to communication with individual families so that you can accommodate their child's special needs while also helping them to explore their strengths and abilities.

Interested in learning more? Here are a few articles that may interest you:

"Creative Inspiration: Art Museums and Autism "by Saira Vasquez, Autism-Asperger's Digest, museoarteponce.org.

"Autism, Inclusion and Museums, "autism.about.com.

"Getting Hands-on With Autism Education "by Lisa Jo Rudy, Autism- Asperger's Digest, autismdigest.com.
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