Why It's So Tough to Be "Autism Accessible"

soccer ball in front of face
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These days, many organizations -- schools, movie theaters, and even some museums -- say that they are "accessible" to people with autism.

What, exactly, are they talking about?

"Accessibility" is a term that comes from Americans with Disabilities Act (ADA), which is most famous for making buildings "accessible" to individuals with mobility challenges. It's because of the ADA, for example, that most public buildings have ramps and elevators, and most businesses have wheelchair-accessible entries.

It's also the reason for braille labels on many restroom doors, headphones for the hearing impaired, and many more accommodations for physical disabilities.

The ADA also includes measures that, in theory, should make institutions more accessible for people with mental and developmental challenges such as autism -- but so far, such accessibility is far from universal. In part, that's because relatively few people are insisting that accessibility should become the norm -- but it's also because it's extremely difficult to describe what "autism accessibility" should look like. People with autism are variously highly intelligent and intellectually disabled, very verbal and nonverbal, very engaged and not engaged at all. They may be very, moderately, or not very sensitive to loud noise or bright lights, and so forth.

In order to create "autism accessible" buildings and programs, therefore, someone (usually an "autism expert") must come up with a list of requirements.

They usually include quieter hours and/or spaces, as well as specific tools to help make experiences more predictable and comfortable. For example, a museum that offers or at least suggests quieter visiting hours, provides a social story to facilitate planning, and has created a sensory map that describes the level of noise and intensity in each area may be considered "autism accessible." Other accommodations may include noise deadening headphones or eye shades available to help manage sensory overload.

Accessibility means that it's possible for an individual with a disability to enter the building with reasonable ease in order to take part in or get use of whatever is generally available inside the building. But the reality is that, for many people, physical access isn't enough.

A person in a wheelchair may be able to physically access a gym, for example, but that doesn't mean he or she can actually play basketball along with everyone else. For that to happen, a great many additional measures must be put into place; often, such measures are considered to be too much of a financial or practical burden to be feasible. The ADA does include clauses which specifically describe circumstances when a financial or practical burden is simply too great to be considered necessary or appropriate.

With autism, the burden can be extraordinary-- because people with autism may have needs that would significantly change the experience or resource being offered (and would also be very expensive to provide).

Imagine, for example, a child with autism who has come to the YMCA to take play peewee soccer. He comes at a relatively quiet time and joins a relatively small group of peers. He has been shown a social story to tell him what will happen.

But because he can't follow spoken language without support, it's extremely difficult for him to follow the coach's directions.

Because he doesn't imitate others' behaviors, he doesn't line up with the other children or take part in the coach's skill drills. Instead, he wanders around the room.

Because he enjoys hearing the sound of the ball bouncing, he becomes distracted or engages in repetitive ball-bouncing.

Because the coach has no experience with autistic children, she is uncomfortable and nervous with the child.

Because the other children and parents are not aware of the child's autism, they have no idea how to interact with the child or his parents.

In such a situation, it's very unlikely that the child will have a positive and successful experience.

Just as a child in a wheelchair may be able to enter a room but not be able to participate in general activities, so a child with autism may be able to avoid anxiety and sensory challenges but still not be able to take part in activities.

Success may depend on staff training as well as awareness-raising within the entire group. It may require pre-teaching and a 1:1 aide to support inclusion. And, even with all these supports, it may turn out that the child with autism simply doesn't grasp the rules of the game -- or has a tough time with the motor skills required to be successful.

Accessibility is only a start, and, in most cases, it's still at its most basic level. Real inclusion requires a level of commitment, training, and funding that goes far beyond mere access.

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