Imagine Giving a Voice to Someone with Autism who can not Speak

Imagine Giving a Voice to Someone with Autism who can not Speak.

The Foundation for Autism Support and Training http://www.myarchway.org/ Opened Unique Augmentative Communication Center in Montgomery County, Maryland.

Many individuals diagnosed with autism are unable to verbally express feelings, thoughts and needs. Their struggle to communicate even the most basic needs through gestures, facial expressions and body language can be frustrating and frightening to these individuals and their families. The inability to communicate effectively often presents a barrier to learning and literacy and creates significant obstacles to social and emotional development and independence.

Augmentative and Alternative Communication (AAC), also frequently called Speech Generating Devices (SGDs) or Voice Output Communication Aids (VOCAs), are devises that can provide a bridge from a life where thoughts, feelings and needs are held in silence, to a life where interaction, expression and learning are possible. “Augmentative communication devices and strategies help us understand that many people with autism have a broad range of feelings, interests, opinions and keen intellectual capacities,’’ says Karen Kaye-Beall, director of the Augmentative Communication Showroom and Demonstration Center in Silver Spring, Md., where people with autism and their families can try out a wide variety of speech generating devices. “At their deepest core, people with autism are loving people who want to have close relationships with others. They just find it extremely difficult and confusing to express the thoughts and feelings that are locked up inside.

Thus, developing and maintaining friendships is very challenging and people with autism can often feel lonely and isolated as a result of their disabilities. People often misunderstand this and believe that individuals with autism want to be alone. In many instances, that is simply not true.”

The basis of all communication is some type of language framework that must provide a vocabulary that is appropriate for the communicator’s age and the multiple settings in which the person needs to communicate, such as at home, school, job sites, and visits with friends and relatives. While adults normally have a speaking vocabulary of between 10,000 and 30,000 words, a “core” of just 100 words accounts for approximately 50 percent of words spoken. Examples of such words include: I, to, you, the, that, have, a, it, my, and, of, will, in, is, me, on, do, was. Speech Generating Devices (SGDs) are programmed to provide a functional and effective vocabulary for any individual with communication problems regardless of age or diagnosis.

There are no cognitive, behavioral or language prerequisites required for most augmentative communication interventions. Nearly anyone can benefit from augmentative communication tools and strategies.

SGDs are intended to enhance existing functional communication by:
1) Clarifying vocalizations, gestures, body language, etc.;
2) Expanding the language of limited speakers by increasing their vocabulary to include verbs, descriptors, exclamatory comments, etc.;
3) Providing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.

With SGDs, a communicator just touches a labeled icon (which may be a Picture Communication Symbol or some similar graphics) on the display screen of the device, and the device will say out loud the word, phrase or sentence the individual intends to express. Users can set the “synthesized” (computer generated) voice to sound like a boy or girl, a man or woman. Also, users can record their own or someone else’s voice, which is referred to as a “digitized” voice recording.

Communicators should begin by communicating words and phrases that are most motivating and reinforcing then gradually add more and more words. Labeled icons (or buttons or cells) can be customized to each individual’s unique choices so that an SGD can be personalized and more closely express each individual’s wants and needs. For example, if a person touches the buttons for “I am hungry,” the page may automatically display a full array of food, drink and condiment choices, as well as a wide variety of restaurants in the community. “In this way, the individual is not taken to Taco Bell, when he really wants to eat at McDonald’s; he can choose mustard rather than ketchup,” says Kaye-Beall. “Little choices like these matter for a person with autism who, without AAC, has difficulty expressing even their simplest preferences. Imagine how frustrating it can be when you are so frequently misunderstood. Frustration and anger may build up, and those feelings will likely become expressed through a full range of inappropriate behaviors.” For SGD users with good typing skills, keyboards with voice output are also available.

Most high-tech devices have touch screen keyboards that allow a communicator to spell words, and most have “word prediction” features that, after a communicator types in two or three letters of a word, present several word choices. Some devices even remember the most frequently typed words and provide these words among the choices. Parents of children with autism despair that their child may be ill but unable to communicate their symptoms. With SGDs, children can learn to touch an icon to say, “I feel sick,” and the page will change to show body parts and asks the question, “Where do you feel sick?” The child will have the option to choose my stomach, my ear, my throat, etc. Sophisticated SGDs and practice will allow a communicator to express nearly anything they need or desire. The most sophisticated SGDs come already preprogrammed with 4,000-plus words and/or icons.

Here are several frequently asked questions by parents who are exploring Augmentative and Alternative Communication (AAC) strategies and Speech Generating Devices (SGDs) for their child, adolescent or adult with autism.

If my child learns to use an SGD, will he become overly dependant on the device to communicate, and will he stop using the words and functional spontaneous communication he already has?

AAC is used to enhance, not replace, existing functional language. AAC is intended to increase, maintain and improve a person’s ability to communicate by augmenting skills or providing additional support. In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero reviews various studies and concludes the following: No research-based evidence exists that demonstrates that AAC interferes with speech development. In fact, research indicates that AAC actually facilitates speech by increasing communication skills and interactions and provides verbal models for speech. Since SGDs usually have visual symbols and/or icons paired with voice output, this combination increases communication in people with autism. Case study research, although limited, shows that the more visual and verbal input received by a person with ASAD, the more expressive language he or she will generate.

What do SGDs cost, and will my private insurance cover the cost?

Most SGDs are covered or partially covered by one or more funding sources. Leading SGD vendors provide staff who guide purchasers through various private insurance plan options and Medicaid requirements. Maryland maintains a low interest loan program for AAC through the MDAT Guaranteed Loan Program at 1-800-TECHTAP. The Foundation for Autism Support and Training (FAST) maintains an up-to-date price list of AAC devices and SGDs. Although FAST does not sell devices, it will refer you to vendors and coops who do sell these devices.

Where can I learn more about ACC devices, see a variety of models, and try them myself?

In the Spring of 2009, The Foundation for Autism Support and Training www.myarchway.org opened the AAC Showroom and Demonstration Center in Silver Spring, Md., the first of its kind in Montgomery County. At no charge and by appointment, any person with autism in Maryland, or any family member of a person with autism may set up an appointment to try out, learn about and play with a full range of leading Speech Generating Devices in a relaxed setting. Trained staff will be available to demonstrate devices, answer questions, and provide AAC information.

Where can I receive advice and consultation on which particular SGD will best serve my child’s needs, and where can I be trained to use a device?
In Maryland, most county school systems have departments of special education, and those departments have Assistive Technology (AT) Divisions. Call your school system’s AT Division to set up an AAC consultation. In Montgomery County, Maryland, call the Interdisciplinary Augmentative Communication and Technology Team at (301) 657-4929. or the Center for Autism Support and Training at 301-260-2777. Private services are also available through Kennedy Krieger Institute at 443-923-9200. http://www.kennedykrieger.org/kki_cp.jsp?pid=1471&bl=1

To learn more about speech generating devices go to: http://www.myarchway.org/ and click on the menu choice called Augmentative Communication.

To learn more about community living options and group homes for adults with autism, click on ARCHway on the same website.