Autism Housing Adaptations: Severe Autism

For more information on housing solutions for individuals with autism, go to www.myarchway.org Also, join ARCHway at www.myarchway.ning.com

George Braddock is the founder of Creative Housing Solutions www.gbcchs.com a leading housing consultant and general contractor with a 25 year proven track record in pioneering the implementation of person-centered planning principles to more than 1,500 projects and homes for people with autism and other disabilities. He is also an ARCHway Consortium member.

This blog article is a first of many articles ARCHway will be posting that George Braddock has written in order to show you the many examples of housing adaptations and modifications for improving the quality of homes for people with autism.

ANNA’S STORY: Severe Autism

Topics Covered:

• Windows
• Backyards
• Water play/Indoors and Outside
• Fencing
• Pica: Eating Hedge Plants
• Lights
• Bathroom
• Kitchen
• Entertainment Center
• Flooring
• Privacy vs. Monitoring
• Scald Prevention

Vigilance and Duct Tape Aren’t Enough Anymore

In 1997 Anna’s parents wrote to us in desperation. Anna was “getting bigger, stronger and quicker, doing things she couldn’t do before”. She was breaking the windows. “Anna has an intense interest in moving water and her powerful need for constant access to water to calm herself is creating serious health and safety issues. She turns on faucets full blast and plays in the water damaging the building and stressing her family.”
It is important to access the whole-person in the context of their environment before you design.

What the professionals told us:

• Anna experiences Autism at a severe level further complicated by enormous sensory processing problems making Anna one of the most challenging children they have encountered.
• Anna is constantly bombarded by sights, sounds, sensations and information that her brain cannot process. The filters and sorters in her brain just don’t work properly.
• Ordinary activities such as eating, sleeping and sitting down are a constant struggle for Anna.
We learned from Anna:
• She needs a home where she can do the things she likes to do without negative consequences.
• She needs a home that makes sense to her and where she is safe.
• Her home must be durable and withstand her “testing the strength of its materials”.
• She wants/needs a home where she can be in control and make choices.
• She needs a home where there are interesting things to do outside and inside that support her love of water and movement.
• Change and surprises are very difficult for Anna/
Anna’s Family Needs a Home:
• Where we can really enjoy Anna without constant intervention and re-direction.
• That will enable our family to remain together in our family home.
• That will keep everyone safe.
• That will allow Anna to safely use the bathroom the way she wants without harm or damage.
• That will provide Anna choices in preferred activities inside and outside the home.
• That is easily modified and adaptable to our family’s changing interests, abilities, needs and lifestyle.


PROJECT GOAL: A safe and sound family home where supports can be always aware of Anna’s activities and whereabouts to help her stay safe. The home needs to be a place where she can do the things she enjoys and learn new skills without hurting herself or others or damaging the building.

Disability is a consequence of the wrong environment.

Windows

Our work began with the most pressing health and safety concerns. Anna was banging on the large single-glazed picture window in the living room and kicking the window next to her bed. Anna had already broken other windows. The family had put up plexi-glass but it made their home “feel like a battle zone”.

New 3/8 inch tempered glass

Lexan installed over the existing window

Plexi-glass, Lexan or other poly-carbonate materials will protect glass from breakage. However, it scratches easily and discolors over time. More importantly, it makes the home “feel like a war zone”.
The sliding glass door and other targeted windows in the house were replaced with tempered glass.




Tempered glass is extremely strong. If it is broken it disintegrates into hundreds of small harmless pieces. Typically ¼ inch glass is placed on the inside and 1/8 inch glass laminated to the outside; this will withstand most heavy abuse. If a person uses tools or has significant head banging or kicking behaviors, 3/8 inch glass can be installed which will withstand extreme testing.





A window was added in the dining room to provide a view to the back yard. It is critical that Anna’s whereabouts and activities are known so that she can remain safe.

It is important to support the needs of the individual and their caregivers.

Backyard

Anna loves to be active in her backyard. She particularly loves running water and the stimulation of swinging. At first a standard backyard swing was adequate. But over time she out-grew it but not her love for the vestibular stimulation it provides. A new appropriate swing was required.




Anna’s fascination with running water was damaging the backyard and undermining the foundation of the house. The watering “square” and a drainage system were installed to collect and route water away from the house. Anna could do the things she loved to do without harming anyone or damaging the house.




The needs and lifestyle of a person with disabilities changes over time.

Fencing

A large Arborvitae provides protection and privacy in the backyard. Unfortunately it is poisonous and can cause seizures if ingested. By installing a coloured wire fence inside the hedge line the privacy afforded by the hedge was preserved.

Anna is all wrapped up in the fabric the family had installed to keep her from eating the hedge.




Safeguarding the reputation of a person with disability is paramount.

Lights

Standard glass ceiling globes were easily broken by balls and other flying objects. These were replaced with wire protected lenses or recessed cans.



Health and safety is improved for everyone in this simple, cost effective modification.

The Bathroom

“Anna’s water play, incontinence and perpetual motion is destroying our bathroom and creating constant stress.”



• Because Anna likes to take 5-10 baths each day, the bathroom floor is always wet and slippery. We use 25-30 towels to mop up excessive water each day.
• Anna pounds on the window and the mirror.
• “Anna is bigger, stronger and quicker. She turns the faucet on full-blast. She gets upset when we run out of hot water.
• “We are afraid Anna will get scalded. We are afraid to leave her alone in the bathroom.”
• Standing water is unsanitary and a slip-hazard.
• “Anna jumps vigorously in and out of the tub.”
• “We have no place to store wet items or bath toys. The existing two-sink vanity is impractical.”



Anna spends many hours each day in the bathroom in intense water play, a source of tremendous stress on her family and damaging to the physical structure of the house. Based on an evaluation of the space, Anna’s desires and her family’s needs, a remodel plan was developed to improve the layout and technical performance of the bathroom. Grab bars, impervious materials, heated surfaces, improved lighting, durable fixtures and other elements were introduced.




New Vanity and Tub/ Shower


Radiant heat mat under the tile keeps the floor warm and helps it to dry faster.

Floor drain eliminates need for 25-30 towels to mop up excessive water after every bath




•Old toilet area is now a place to store wet items
•Tempered glass mirror


Basket provides place to store wet toys. Window with 3/8” tempered glass


Anna will not use the existing toilet.
The space is cramped making it difficult to assist.
There needs to be additional room around the toilet.
It needs to support a toileting ritual that makes sense for her.
The space needs to be inviting and comfortable for Anna.



The new toilet location provides adequate room to assist.
It is bright and inviting.
The area is warmed by the floor heat.
Tile surfaces are easily cleaned and sanitized.
Shelves support use of picture schedules.



The evaluation of the completed project and its effect on Anna’s life shows that she can now do what she clearly enjoys without negative consequences. Safety is improved, damage to the building is minimized and her family experiences significantly less stress and more freedom because they spend less time doing intensive supervision and clean-up. Anna has exhibited a reduction in behavioral episodes because she experiences more choice, control and independence in her life.

The Kitchen

The kitchen in Anna’s home has always been the center of activity. When she was little she had to have the water running near-by in order to eat her food. When she was not in the bathroom or outside playing with water, she was at the kitchen sink.



“Anna’s water activities at the sink have caused significant damage to wood, walls, sheetrock, countertops and cabinets.” Dry rot has and will continue to occur.

Plastic installed to protect walls and countertops detracted from the feeling of home.



New post-form laminate countertop and cast iron sink with heavy duty faucet supported Anna’s use of the kitchen without damage.




over time Anna has developed a love of cooking, she is an expert at pouring and measuring liquids “she never spills a drop”.



A supportive physical environment promotes individual independence and empowerment.


Entertainment Center

Anna needs a water proof entertainment center because she will fill her mouth with water and will spit on the TV when she is upset. There were six water-logged televisions in the garage.

Anna’s bedroom is her ‘safe place’. The TV and VCR are her favorite ‘comforting things’. Her large photo albums, favorite tapes, story books and beads need to be in her bedroom.



The entertainment center has a water-proof, lockable area for the TV. Vent holes were drilled to prevent over-heating; speakers were installed in the ceiling, to keep the sound from disturbing her brother next door. The unit was inset in the wall to save floor space and ensure a solid connection to the framing. Space was provided for her favorite things closer to the floor.




Over time Anna gained more experience and developed the capacity to use her TV without assistance. With more control came more opportunities. She no longer needs a locked cabinet in her room and freely uses the entertainment center in the family room.


Flooring

Although carpeting is ‘home like’, even the best of it is difficult to keep clean or sanitize. Anna “has toileting accidents, food spills and then there is always the water”. The biggest issue is in the bedroom, her sleeping and leisure space. We need to be able to clean and deodorize this environment easily.




The carpet was replaced with a commercial grade vinyl. The material was coved up the walls to protect the edges from water. Throw rugs that can be simply picked up and laundered as needed help to soften the look of the vinyl floor coverings.


Privacy Versus Peace of Mind



When Anna was in her safe place, her family needed to know if she was okay or needed their help to stay safe. When they opened the door to check on her, the interruption would trigger an immediate change in whatever she was doing often for the worse.

After much discussion of privacy versus peace of mind a wide angle door viewer was installed that enabled the family to look in on Anna without disturbing her.


Scald Prevention

Because Anna was able to turn the faucets on “full blast” by herself scald prevention became a concern. We installed a whole house tempering valve on the hot water heater that prevents hot water from being delivered at a dangerous temperature.

People with Autism Don't Like to be Labeled "Autistic People"

People with Autism Don't Like to be Labeled "Autistic People"

Nobody Likes to be Labeled

The country’s fastest growing developmental disorder, autism is now a national epidemic. One in every 91 births results in a diagnosis of autism spectrum disorder. With an annual growth rate of 10 to 17 percent in the U.S.A., a new case of autism is diagnosed every 20 minutes, 24,000 new cases every year. From the best current statistics, a total of 1 to 5 million Americans carry a diagnosis on the autism spectrum.

Autism is a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. As a “spectrum” disorder, autism affects each individual differently and to varying degrees.

In recent years, since the introduction of Augmentative Communication devices, such as portable laptop computers that provide language for the person with autism, we have now come to understand that many people with autism have a broad range of feelings, interests, opinions, and keen intellectual capacity. Just like everyone else, at the deepest core, people with autism are sweet, 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, very challenging and just like anyone else, 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. That simply is not true.

Some in the public believe or misunderstand the occasional unique talents of people with autism as indicating that they are "autistic savants" with special extra sensory perceptions, photographic memories or idiosyncratic genius. This is not usually the case, even though some persons with autism have surprising gifts—some never forget a name, others who may appear unable to communicate normally may be able to recite accurately the first 200 names in their video collections.

It is all too easy to stereotype people with autism as bizarre and to forget the possible richness of their inner world of the possibility of their living a satisfying life. Still, we should not ignore the real challenges faced by people with autism nor the traits that can interfere with adaptation to life skills and to relationships.

Overview of Autistic Traits*

Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling or in contrast, may hug too forcefully
Sustained unusual or repetitive play
Uneven physical or verbal skills
May avoid eye contact
May prefer to be alone
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects

Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others

Insistence on Sameness

Easily overwhelmed by change, even slight changes.
Highly sensitive to environmental influences, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect. Fatigue, and sensory overload easily throw them off balance.
Transitions are difficult.

Impairment of Social interaction

Seems naive, unaware of "the ways of the world", egocentric.
May dislike physical contact
Talks "at" people instead of to them
Does not understand jokes, irony, or metaphors
Monotone or stilted tone of voice
Inappropriate gaze and body language
Insensitive and lacks tact
Misinterpret social cues, doesn't understand facial expression and body language.

Restricted Range of Interests

May have intense fixations (sometimes collecting unusual things).
They tend to relentlessly "lecture" on areas of interest, ask repetitive questions about interests, and have trouble letting go of ideas.
They often follow their own inclinations regardless of external demands, and sometimes refuse to learn about anything outside their limited field of interest.

Sensory Issues and Poor Concentration

May often seem off task and distracted by internal or external stimuli or sensory issues.
Acts disorganized, not knowing where to start or end.
Unusual reactions to different stimulus

Poor Motor Coordination

May be physically clumsy and awkward. May seem accident-prone and have a hard time playing games involving motor skills.
They often have fine motor deficits that can cause penmanship problems that affect their ability to form letters or write clearly.

Language Difficulties

May be nonverbal, minimally verbal, or may seem behind in communication. In contrast, may be very advanced (sound like a walking dictionary or encyclopedia).
Tend to be very literal.
Their images are concrete, and abstraction is poor.
May give the impression that they understand what they are talking about, when in reality they may be merely parroting what they have heard or read.)
Rely on pictures more than understanding of words and may have reading difficulties
Poor auditory processing.

One might say that a person with autism struggles with autistic challenges or has many unusual autistic behavior patterns. That would be correct, because along with communication problems and difficulties in making and maintaining friendships, many people with autism struggle with sensory integrative dysfunctions. This may cause a person with autism to feel a much more exaggerated sensation across some or all of their senses. In some instances, sounds can be heard as very loud; lights can be seen as extremely bright; certain foods and flavors may taste very strong or unpalatable; and physical sensations can be very irritating.

Some people with autism find that it brings them comfort to rock back and forth or spin in circles in a manner that appears odd to others.

Still others find it threatening to be in crowds or groups of people because they may have difficulty reading another person’s facial expressions and as a result, may misinterpret another person’s intentions.

In this field, words and terms can be important. Regardless of how high or low functioning a person with autism may be, he or she is a person in his or her own right, first and foremost. He or she is a person who happens to be struggling with and trying to deal with the difficult challenges and symptoms of an autism spectrum disorder to a greater or lesser degree.

We believe it is more inclusive, sensitive and respectful to refer to a person who is diagnosed with autism as a “person with autism,” not as an “autistic person.” The same idea applies when you speak to a parent who has a child or an adult with autism. It shows more respect to refer to them as a parent of a child with autism, not the parent of an autistic child. Just like all parents, we love our children, whether they have a diagnosis on the autism spectrum or if we are parents of “typical” children. A parent is a parent, regardless of the challenges our children struggle with. If we refer to a person on the autism spectrum as a person with autism, not an autistic person, we better allow that person their dignity as an equal member of society.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Why Parents of Adults with Autism Need to Develop a Written Life Plan

A written life plan helps ensure your adult child’s needs are thoroughly understood by future caregivers.

Since none of us can be sure what the future holds, it is critically important for a parent of an adult on the autism spectrum to develop a written life plan for their loved one well before their adult child may need to leave the family home. A life plan helps parents answer the question, “What will happen to my child when I am gone or unable to care for him or her?” A life plan spells out in detail the personal needs and preferences of the individual with autism. It also lays out a parent’s intentions for future care of their adult-child throughout the life-span and clarifies financial and legal arrangements made on behalf of the person with autism. Life planning is a key component of the family training and autism education services offered through the Foundation for Autism Support and Training (FAST).


Why You Need to Develop a Life Plan for a Person with Autism

A parent of an adult with autism may wrongly assume that their other children or a sibling will take care of their adult child with autism, once they are gone. This arrangement is frequently unworkable.Many parents of adults with autism are so busy dealing with the day- to- day care of their loved ones, or are under so much stress dealing with the extreme demands of parenting, that they have not planned for their children’s futures. Some parents are not aware that life plans are needed and valuable, while others are confused about how to write a life plan or where to seek help.Many parents of adult children with autism believe they will continue to be the primary caretaker for the remainder of their loved one’s life. Such unrealistic and magical thinking does not consider the following possibilities:

· The fact that most adults on the autism spectrum outlive the parents;

· The adult with autism may develop behavior patterns that may create a serious, unanticipated crisis situation that would make it unsafe for the loved one to continue living at home;

· The parent may wrongly assume that other children will take care of their disabled sibling, not realizing that in reality, this plan would be unworkable or unrealistic;

· The extremely undesirable circumstance where the consumer with autism might become the caregiver to his own parent;

· The parent may erroneously assume that the government will take care of his loved one sufficiently or find quality group homes or quality residential facilities.

· Avoiding or delaying the process of life planning could eventually cause a loved one with autism to go through some very rough times in the future or end up in large residential facilities where the individual’s quality of life is greatly reduced.

· Some current financial benefits may be interrupted, which would affect the consumer’s quality of life. · New caregivers in group homes and residential facilities may have difficulty understanding the consumer’s actions, desires, preferences, communication patterns, etc., without written guidance.

· Without written details of a parent’s wishes and desires, future caregivers may unknowingly go against the parent’s wishes for their loved ones.

· Imagine how confused and upset the consumer would feel not knowing where his next meal is coming from or where he will sleep that night! If life planning is accomplished before a crisis erupts, parents can gradually plan for their adult child’s future, and managers and staff of small residential facilities, group homes, or supported housing options in the community can get to know the consumer’s need and behaviors, which will determine what type of residential setting and residential care will best address his or her emotional and therapeutic needs.

Life Planning Services can and should be a centerpiece of ancillary family training and autism education services offered by supported and alternative community housing providers and day program services providers and vendors. Recommendations and resources should also be provided to help families find experts in special needs law and financial planning.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Why does Augmentative and Alternative Communication (AAC) Work so Well for People with Autism?

Why does Augmentative and Alternative Communiation (ACC) work so well for people with autism?

In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero talks about all the ways AAC fits people with autism well (page 26)

Most people with autism are visual learner - AAC uses visual cues
Many people with autism are interested in inanimate objects - AAC tools and devices are inanimate
Many people with autism have difficulty with complex cues - Level of complexity can be controlled so AAC grows with the child
Many people with autism have difficulty with change - AAC is static and predictable
Most people with autism have difficulty with the complexities of social interaction - AAC provides a buffer and bridge between communication partners
Some people with autism have difficulty with motor planning - AAC is motorically easier than speech
Many people with autism experience anxiety - AAC interventions don’t apply pressure or stress (when introduced properly)
Many people with autism present behavioral challenges - AAC provides an instant means to communicate, preempting difficult behaviors
Many people with autism have difficulty with memory - AAC provides means for language comprehension that relies on recognition rather than memory.
On page 33, Dr. Cafiero lists the benefits of AAC for individuals with autism:
May stimulate brain development
Supports functional spontaneous communication
Facilitates access to social information
Facilitates inclusion at home, school, and community
Facilitates greater independence in the home, school, and community
Facilitates access to literacy experiences
Preempts the need to develop aberrant communicative behaviors (reduces meltdowns) Provides voice and ears to people with autism, including psychological benefits of better understanding others and being understood
Facilitates an improved sense of self concept due to greater independence and fewer outbursts

Is an augmentative communication device only appropriate for who are non-verbal?

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) Replacing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.

To learn much more about augmentative communication devices (speech generating devices) for people with autism, go to www.myarchway.org and click on the menu choice called Augmentative Communication.

There you will find a broad table of contents on this subject including:

Why does Augmentative and Alternative Communication (ACC) work so well for people with autism?
Is an augmentative communication device only appropriate for people who are non-verbal?
How do augmentative communication devices work?
What are the ranges of topics an AAC user can communicate about using an augmentative communication device?
Where can I learn about the many different types of AAC Devices?
If my child learns to use an Speech Generating Device (SGD), will they become overly dependant on the device to communicate and will they stop using the words and functional spontaneous communication they already have?
How much do these SGDs cost and will my private insurance cover the costs?
Where can I go to learn about and actually try out a variety of ACC devices?
Are there helpful websites about AAC strategies and topics?
Where can I receive advice, consultation and an AAC assessment on which particular SGD will best serve my child’s needs and where can I be trained on how to use a device?
Are there Speech and Language Pathologist jobs in Maryland where training is provided on AAC?

For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.

To see our public service announcement that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Karen Kaye-Beall, director of ARCHway-FAST

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.