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

Augmentative Communication news stories with Karen Kaye-Beall and Tyler

Augmentative Communication news stories with Karen Kaye-Beall and Tyler

If you would like to see some short news shows that feature Karen Kaye-Beall working with her son Tyler Beall on an augmentative communication device and also see a range of AAC devices in the Foundation for Autism Support and Training - Augmentative Communication Showroom and Demonstration Center, go to www.myarchway.ning.com and become a member (free of charge). Scroll down the far left hand margin and you will find the links to a variety of news reports.

There is also a very good introductory video on You Tube on this subject:

http://www.youtube.com/watch?v=Eb_URYj_L_k

Although this You Tube video primarily features Dynavox products, by no means is Dynavox the only manufacturer.

Here is a list of only a few of the hundreds of other manufacturers. This list represents the devices we have in our AAC showroom and does not necessarily constitute an endoresment. Some manufacturers were kind enough to donate a sample device to our non profit showroom, some provided signficant discounts, others did not cooperate, so we had to purchase a few devices to have a comprehensive sample of devices.

These prices were 2009 prices so do your research with each company to get up to date pricing.

My son Tyler is using a green Vantage Lite (by Prentke Romich) with Picture Word Power added onto it. You will find that info below as well. We really like this device and software for Tyler, but keep in mind, a qualified speech and language pathologist must do a proper assessment to determine which device will best serve your chld or adult with autism. Check with your school system's special education department to see if they have an Assistive Technology Department. If so, try to arrange an AAC assessment free of charge for your child.

If you can not get that service where you live, call any of the vendors below, especially Dynavox or Prentke Romich to speak with their Speech and Language Pathologist to see if they can provide you with the name of a qualifed expert you could hire privately in your area for an AAC assessment. Other vendors below may also be able to provide that advice and referral information.

Little Mack, Ablenet Inc. $109. 800-322-0956

Step by Step, Ablenet Inc $140-179. 800-322-0956

Talk Pad, Frame Technologies $99. 920-869-2979

Lingo, Ablenet Inc $179. 800-322-0956

Voice Pal 8K, Adaptivation, Inc. $219. 800-723-2783

SuperTalker, Ablenet Inc $375. 800-322-0956

Go Talk 9, Attainment Corp. $199. 800-327-4269

Go Talk 20, Attainment Corp $249. 800-327-4269

Chat PC, Saltillo $2020-$2800 330-674-6722

Auggie, RJ Cooper, $2000 800-752-6673

Mini Auggie, RJ Cooper $1149 (case $49) 800-752-6673

Vantage Light, PRC, $7000-$8000. 800 -262-1933

Dynavox V, DynaVox/Mayer-Johnson 866 - 396-2869$7500-$8500

Speaking Dynamically Pro, Mayer-Johnson Co. $519 + Picture WordPower add on +$350. 800-588-4548

For further information on augmentative communication devices and how they can help individuals with autism, go to: www.myarchway.org and click on the menu choice called Augmentative Communication.

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 on autism housing 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

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

A life plan for an adult on the autism spectrum is a critical document developed on an ongoing basis that details a comprehensive plan for your loved one’s life.

A Life Plan should include a parent’s specific wishes and desires for their adult child’s future living arrangements throughout the lifespan.

The information in a Life Plan is then used by people who subsequently care for the adult with autism when the parent is no longer the primary caretaker.

The plan should be reviewed annually as the consumer ages and the family situation changes, and at least every three years to ensure that legal documents are still up to date;

The plan containes legal planning documents such as wills, special needs trusts, arrangements for guardianship and guidelines for establishing or maintaining state and federal benefits;

Financial planning in conjunction with legal planning that will safeguard SSI and Medicaid benefits, and inheritance;

Financial planning to ensure that the “extras” in life that families provide--cable TV, vacations, favorite books and CDs, favorite clothing styles--are continued;

Predictions of probable medical needs and desired interventions;

Residential needs and desired living environments such as alternative housing options, residential facilities, group homes, and supported living options in the community;

Details on the consumer’s likes, dislikes, preferences and unique personality features;

Instructions for final arrangements and burial plans;

Detailed choices a consumer may wish to make beyond basic food, housing and medical needs;

Specifics on how the consumer may have control over his/her life choices;

Assurances are detailed that someone the family knows and trusts will be watching over and advocating for their loved one;

The life plan may also provide a schedule or example of a typical day in the life of the consumer.

For further information of Lifespan Planning for people with ASD go to www.myarchway.org and go to the Lifeplanning menu choice.

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.

Developing Person-Centered Community Housing Options for Adults with Autism

Autism Reoriented Community Housing (ARCHway) is an community housing initiative by the Foundation for Autism Support and Training, a national non-profit offering advice and consultation on person-centered housing solutions for adults with autism. Members of ARCHways Consortium have 20-30 years experience and include pioneers of person-centered housing and assistive technology for people with autism and other related disabilities. ARCHway’s Executive Director, Karen Kaye-Beall offers Q&A.1. What is meant by the term a “person-centered” approach to developing housing for people with autism?As most people know, autism is a spectrum disorder. People with autism can be low, mid or even high functioning persons. In person centered planning, it is critically important to have a very thorough understanding of the many signs and symptoms each individual with autism experiences. The main signs and symptoms of autism involve problems (to greater or lesser degrees of severity) in the following areas:--Communication - both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)--Social - such as sharing emotions, understanding how others think and feel, and holding a conversation. They have difficulty reading facial expressions or picking up social cues.--Stereotyped behaviors - Routines or repetitive behaviors such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways. Also unable to play or keep themselves occupied in a normal or typical fashion. Many experience sensory integrative dysfunction.--Sensory Integrative Dysfunctions -Many people with autism also experience “sensory integrative dysfunction” which means that their sensory channels can be abnormal. They may become ultra sensitive to certain sounds, certain sights, certain textures, and certain physical sensations. So for some, it becomes important to control the environment so that these overwhelming sensory overload experiences are kept to a minimum.Each and every individual with autism certainly does not experience each and every symptom, or with the same severity. Different people with autism can have very different presenting symptoms. Within each of the key diagnostic categories, i.e., communication, social, behavioral and sensory, one person may have mild symptoms while another may have serious symptoms that may cause them to need close support so they do not become a danger to themselves or others.. But they both have an autism spectrum disorder.A person-centered approach takes into consideration the differing support and environmental needs of each and every individual, to ensure that each person is kept safe, yet is allowed the maximum independence they are capable of handling while provided with experiences, activities and opportunities to continue to learn and grow and thrive.2. When designing community living models and options for people with autism, it is important to consider whether the individual has support needs that are consistent with someone who is higher functioning, middle of the spectrum or lower functioning?One size never fits all, but it is possible to create subcategories of support needs. For those that sound insulation is an important element, for example, housing with sound insulation will best meet the needs of these individuals in this subset. There are many such examples.--On the higher end of the autism spectrum (many having a diagnosis of Asperger’s Syndrome, but not all), some having received ongoing support and training as a child and therefore, learned to function relatively independently in terms of activities of daily living and spend their time somewhat productively as an adult, but likely with restrictive interests or obsessive interests. Some or all of their symptoms may be considered mild. They may have varying degrees of communication and social skills, and demonstrate some self-stimulatory behaviors, but may still lack safety awareness and may show some obsessive compulsive behaviors. Consumers need their supports (to lesser degrees), to see and monitor their activities. They still may require some lists and visual prompts for daily living. These individual may certainly be able to live in apartments or townhouses with appropriate staff support living with them, depending on their individual needs. It may be fine to indentify housing as part of the already established housing fabric in our society. However, in some instances, adaptations may need to be added such as better sound insulation, alarm systems or the inclusion of certain assistive technology such as sensors and various non invasive monitoring devices.--On the middle of the autism spectrum, usually meaning that they have some degree of severe communication problems, social problems, some self-stimulatory behavior, and “occasionally” demonstrates an aggressive action or “occasionally” does some action that may harm them. Many will show some obsessive-compulsive traits. They also may need some help in activities of daily living, but also self sufficient to some degree. Most lack safety awareness. These individuals may test the strength of materials in their physical environment. Consumers need their supports to see and monitor their activities to assure safety. They will likely still need prompts and visual supports for daily living. These individuals may likely need 24 hour care, but can handle a number of activities of daily living if reminded. People that test the strength of their environment need a number of adaptations in the environment, many of which may not be easily found in the readily available housing fabric. Adaptations may include the need for safety glass in windows; doors that do not slam; cabinets and walls made of materials that do not fall apart easily for harder daily wear and tear--On the low end of the spectrum: It is fair to say that those with ASD that frequently (rather than only occasionally) display severe problem behaviors including aggression, self injurious or disruptive behavior are referred to as being on the low end of the autism spectrum, regardless of their ability to communicate, socialize or function reasonably independently. Some of these individuals may have been in facilities for many years, with little or nothing to do and some may have taken any number of combinations of prescribed drugs that rather than control these behaviors, may have increased some unacceptable and maladaptive behaviors. When considering the stereotype of someone with autism who never acknowledges those around them, sits constantly rocking in a chair all day, and is a person needing help with many or most of his hygiene needs, it is likely fair characterize that person as being on the low end of the spectrum. This individual lacks safety awareness. These individuals will test the strength of materials in their physical environment. These consumers need their supports to see and monitor their activities to assure safety. They will likely still need frequent verbal and visual prompts for daily living and likely much hand over hand prompting to accomplish most tasks.3. Are you saying that people with autism can not live in typical housing?No, I am not saying that. It is always preferable when people with autism can live in typical housing already available, but when taking a person-centered approach, it is mandatory that the physical environment matches the behavioral and support needs of each individual that lives there, or else, you may find a house that has constant holes in the walls, broken windows, broken curtain rods or such thin walls, that each individual who may be sensitive to sound may have behavioral melt downs unless some appropriate sound insulation is put into place. In some instances, these adaptations can be done as a simple renovation to preexisting housing. In other situations that are much more complex, it can be much more cost effective to just build new from scratch and not try to renovate a pre-existing environment.4. In your experience, do group homes address these adaptations to the physical environment and use person centered approaches?While using a person centered approach has become an ideal for many providers of residential services in the autism field, in most instances, it is not fully put into practice. An opening or available bed will become available in a group home, and that opening will be offered to an individual in need. If the new person with autism needs a higher staffing ratio, that modification may or may not be put in place, but rarely are modifications done to the actual physical environment to accommodate the needs of the new individual. It is usually after the fact that holes in the walls are repaired, or new doors placed back on their hinges and so forth that environmental modifications are done, and in many cases, not even then.5. What alternatives do parents of adults with autism have besides accepting the next bed that opens up in a group home?A parent can always try to work with a provider or vendor to ask them to make environmental adaptations to suit their loved one’s needs. If that fails, a parent has the option to develop their own housing for their loved one with autism and that might include a roommate situation, or it might be jointly owned by the group or the trusts of the group as “cooperative housing”. In this case, a small group would form together to create housing, and would seek the guidance and consultation of a group like ARCHway, whose consortium members and consultants have countless years of experience developing housing and adapting housing to meet the needs of people with autism on all parts of the spectrum. They are also experienced in recruiting, training and supervising support staff and can provide the group ongoing consultation until they are able to develop the staffing structure and the housing they need. They can also serve as intermediaries between a parent group and a residential provider or vendor who may wish to provide services to that particular co-op group.6. How much does specialized housing cost?Costs vary tremendously, depending on the costs of real estate around the country and depending on the square footage needed in each situation. Some individuals with autism may not be able to live with others, so may do best in a duplex model with caretakers living next door. Or some families may like to create a studio apartment off the back of their home so their loved one and a caretaker can live their. There may be instances where three people may want to share a home, but establish individual suites with separate full bathrooms and sitting rooms in each suite. While that model may prove advantageous for many reasons, it may require much more square footage and thus be more expensive.The best way to determine costs is by taking a person-centered approach and determining the needs of that individual or that group of individuals to determine the housing features that work best. Then pricing can be determined.7. Can you please provide us with more examples of what you mean by housing modifications and adaptations?Of the many elements that are considered in Universal Design, the main theories demand attention to acoustics, finishes, colors, textures, way-finding, scale, floor transitions, ramps/general accessibility standards, security, and glare.Keeping in consideration that all these features I will mention will not be appropriate for each individual, here are some examples:-layers of security so if someone tends to elope, there are a number of mazelike exits that staff can catch up to the person, before they could escape to the street unattended.-solid wood doors that don’t slam to help with sound insulation-insulation around air vent systems to insulate for sound-safety glass in windows-break away shades that won’t be damaged when pulled-Hardened walls and surfaces that won’t make holes when punched. Hinges that won’t easily break.-layout of housing that allows for pacing or walking in a circular motion without restriction-Proper safety storage systems-Lighting systems that allow control of the lighting in the environment, including electronic shades.-offices for staff that provides a second exit for situations of aggressive behavior-reducing the amount of sharp edges and corners in the home.-Extra wall insulation or insulation around systems in the house that might have motors.-Special attention also needs be paid to interior materials—low VOC/urea-formaldehyde paints, glues, and other materials will be used instead of the typical off-gassing materials used in typical home.-Durable fabrics on furniture-Soothing color choices on walls-bathroom floor drains to prevent flooding-Regulated temperatures in taps to prevent scolding-Room layouts and storage to promote greater independence in life skills,-Assistive technology(telecare technology) that might include computer set ups to let an individual say goodnight to parents remotely such as SKYPE; sensors where remote monitoring by staff provides information if loved ones are in bed, wandering the home, opening the refrigerator, taking a shower and more.-Many people with ASD are extremely sensitive to thermal changes, textures, lighting intensity, strong smells, visual transitions, visual noise, glare, and any other distractions that affect the senses. Using sustainable strategies will also allow building inhabitants to feel a psychological and physical connection to the outside environment. These strategies include visual connections to the outdoors (daylight and views), increase air ventilation, and controllability of systems, which leads to better indoor air quality, increased human comfort, and an overall reduction in toxins.
8. 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 plan for the housing needs of their transitioning teens or adults with autism may contact ARCHway at http://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
http://www.myarchway.org/