Here we provide a description of the types of of group homes, supportive living, supervised living, farmstead programs, community living options, family teaching model, cooperatives, shared housing and other residential models. For a state by state listing of group homes and residential service providers, go to www.myarchway.org and to talk with other parents who want to discuss this topic, go to www.myarchway.ning.com
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
Showing posts with label autism support. Show all posts
Showing posts with label autism support. Show all posts
Thursday, March 18, 2010
Help for Autism: Creating a Good Quality of Life for Adults with Autism
To find out more about how you can improve the quality of life for adults with autism, go to www.myarchway.org
Quality of Life may be defined as the degree to which a person enjoys the important possibilities of his or her life. Quality of Life for people with autism spectrum disorder consists of the same aspects of life as for all other people. But people on the autism spectrum have their own specific needs that must be met to ensure a good quality of life, to include the quality of the environment (group homes, residential facilities and community living options) in which the person with autism lives.
Quality of Life for adults with autism always starts with dignity and respect for each person, but in addition, there are also specific needs for an adult on the autism spectrum that must be met to ensure a good quality of life.
Dr. Susan Bryson wrote about the central needs of adults with autism and the essential qualities that need to be part of any services and supports for adults with autism to ensure a quality life. She summarizes the major needs of people with autism as:
The need to communicate wants and desires and to interact meaningfully with others;
The need for highly structured, predictable and familiar surroundings;
The need for work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others;
The need for a safe and caring place of residence chosen from options along a continuum of residential services;
The need for adequate and sensitive health services;
The need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual.
Regarding quality of life issues, the declaration by The Autism and Asperger's Syndrome Independent Living Association (whose majority membership are adults with autism) states:
Measuring “quality” assures standards that exceed current professional practice and calls for periodic redefinition of "best practices." Any measurement of quality should consider "the satisfaction and preferences of the individual with autism and Asperger's Syndrome first and foremost and the satisfactions of family, friends and advocates as secondary." Supports and services for people on the autism spectrum are said to have quality when:
They are designed with maximum control by people with autism and Asperger's Syndrome;
They would be acceptable to people without disabilities;
They are delivered in settings people without disabilities would use;
They are individualized and relevant to individual needs;
They are changed as the needs of individuals change;
They are adequately funded;
They help people develop maximum independence;
They respect the dignity and privacy of individuals.
To improve the quality of life for adults on the autism spectrum, the quality of their living environment, i.e., community housing options, residential facilities, residential programs, residential schools, group homes, supported housing, and housing alternatives should be carefully considered.
A quality environment:
Provides basic needs including healthy and appealing food, shelter, safety and social contact;
Provides a caring place of residence chosen from options along a continuum of residential services;
Provides a range of opportunities within the individual’s potential;
Provides control and choice within that environment;
Provides proper autism treatment for consumers and autism-specific training of direct support staff and their supervisors to ensure a proper understanding of the issues that affect adults with autism spectrum disorder; and
Provides augmentative communication tools, technology and related services to help consumers with autism communicate wants and desires and interact meaningfully with others.
Overall findings on Quality of Life (QOL) issues were reported in Quality of Life – Dream or Reality? Life for People with Developmental Disabilities in Ontario by Ivan Brown, Dennis Raphael and Rebecca Renwick (Quality of Life Research Unit, Centre for Health Promotion, University of Toronto, 1997).
Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large institutional settings and large residential facilities and residential schools for nonverbal people everywhere. People with autism are "nonverbal" in that they either do not use speech at all, or they do not use functional speech as compared with typical people. Moreover, adults with autism have seldom been appropriately supported with augmentative and alternative means of communication. The factors involved in QOL may be expressed more positively.
People with higher QOL were associated with the following characteristics:
Living in community settings;
Having verbal skills;
Having higher functional abilities;
Not seeing a psychiatrist or taking psychotropic medications;
Not having complex medical needs;
Nonverbal people with higher QOL were associated with:
Having an occupational activity of some kind;
Not having marked behavior problems;
Having leisure activities in community;
Having community access;
Being more independent;
Making own decisions;
Having opportunities available from which decisions can be made;
Having practical support from other people;
Having emotional support from other people.
Quality of life for people with autism spectrum disorder and other developmental disabilities consists of the same aspects of life as for all other people. But adults on the autism spectrum, many of whom can not effectively communicate their needs, have specific needs that must be met to ensure a good quality of life. Many of these needs center on a range of sensory integration issues they struggle with, and those need to be recognized and appropriately addressed by caretakers.
Quality of life for people with autism and other developmental disabilities is based on common aspects of life for all humans, but it also reflects, from person to person, varying degrees of importance placed on those aspects of life. Quality of life for all people reflects how satisfied they are with aspects of life that are important to them. People live in environments. Thus, quality of life results from the interconnection between people and the environments in which they live.
To find more information on how you can help improve the quality of life for adults with autism spectrum disorder and other pervasive developmental disorders, contact the www.myarchway.org
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
Quality of Life may be defined as the degree to which a person enjoys the important possibilities of his or her life. Quality of Life for people with autism spectrum disorder consists of the same aspects of life as for all other people. But people on the autism spectrum have their own specific needs that must be met to ensure a good quality of life, to include the quality of the environment (group homes, residential facilities and community living options) in which the person with autism lives.
Quality of Life for adults with autism always starts with dignity and respect for each person, but in addition, there are also specific needs for an adult on the autism spectrum that must be met to ensure a good quality of life.
Dr. Susan Bryson wrote about the central needs of adults with autism and the essential qualities that need to be part of any services and supports for adults with autism to ensure a quality life. She summarizes the major needs of people with autism as:
The need to communicate wants and desires and to interact meaningfully with others;
The need for highly structured, predictable and familiar surroundings;
The need for work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others;
The need for a safe and caring place of residence chosen from options along a continuum of residential services;
The need for adequate and sensitive health services;
The need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual.
Regarding quality of life issues, the declaration by The Autism and Asperger's Syndrome Independent Living Association (whose majority membership are adults with autism) states:
Measuring “quality” assures standards that exceed current professional practice and calls for periodic redefinition of "best practices." Any measurement of quality should consider "the satisfaction and preferences of the individual with autism and Asperger's Syndrome first and foremost and the satisfactions of family, friends and advocates as secondary." Supports and services for people on the autism spectrum are said to have quality when:
They are designed with maximum control by people with autism and Asperger's Syndrome;
They would be acceptable to people without disabilities;
They are delivered in settings people without disabilities would use;
They are individualized and relevant to individual needs;
They are changed as the needs of individuals change;
They are adequately funded;
They help people develop maximum independence;
They respect the dignity and privacy of individuals.
To improve the quality of life for adults on the autism spectrum, the quality of their living environment, i.e., community housing options, residential facilities, residential programs, residential schools, group homes, supported housing, and housing alternatives should be carefully considered.
A quality environment:
Provides basic needs including healthy and appealing food, shelter, safety and social contact;
Provides a caring place of residence chosen from options along a continuum of residential services;
Provides a range of opportunities within the individual’s potential;
Provides control and choice within that environment;
Provides proper autism treatment for consumers and autism-specific training of direct support staff and their supervisors to ensure a proper understanding of the issues that affect adults with autism spectrum disorder; and
Provides augmentative communication tools, technology and related services to help consumers with autism communicate wants and desires and interact meaningfully with others.
Overall findings on Quality of Life (QOL) issues were reported in Quality of Life – Dream or Reality? Life for People with Developmental Disabilities in Ontario by Ivan Brown, Dennis Raphael and Rebecca Renwick (Quality of Life Research Unit, Centre for Health Promotion, University of Toronto, 1997).
Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large institutional settings and large residential facilities and residential schools for nonverbal people everywhere. People with autism are "nonverbal" in that they either do not use speech at all, or they do not use functional speech as compared with typical people. Moreover, adults with autism have seldom been appropriately supported with augmentative and alternative means of communication. The factors involved in QOL may be expressed more positively.
People with higher QOL were associated with the following characteristics:
Living in community settings;
Having verbal skills;
Having higher functional abilities;
Not seeing a psychiatrist or taking psychotropic medications;
Not having complex medical needs;
Nonverbal people with higher QOL were associated with:
Having an occupational activity of some kind;
Not having marked behavior problems;
Having leisure activities in community;
Having community access;
Being more independent;
Making own decisions;
Having opportunities available from which decisions can be made;
Having practical support from other people;
Having emotional support from other people.
Quality of life for people with autism spectrum disorder and other developmental disabilities consists of the same aspects of life as for all other people. But adults on the autism spectrum, many of whom can not effectively communicate their needs, have specific needs that must be met to ensure a good quality of life. Many of these needs center on a range of sensory integration issues they struggle with, and those need to be recognized and appropriately addressed by caretakers.
Quality of life for people with autism and other developmental disabilities is based on common aspects of life for all humans, but it also reflects, from person to person, varying degrees of importance placed on those aspects of life. Quality of life for all people reflects how satisfied they are with aspects of life that are important to them. People live in environments. Thus, quality of life results from the interconnection between people and the environments in which they live.
To find more information on how you can help improve the quality of life for adults with autism spectrum disorder and other pervasive developmental disorders, contact the www.myarchway.org
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
Autism and Sensory Integrative Dysfunction: What Helps
Sensory Integrative Dysfunction is one of the key presenting symptoms for people with autism spectrum disorder (ASD) but rarely will you find it mentioned in the top four descriptions of autism. As a result, a very important issue is often overlooked in many of the treatment approaches to helping people with autism. Many "behaviors" demonstrated by people with autism are often misunderstood, and reasons for meltdowns or tantrums are often assigned the wrong meaning or explanation.
As a trainer of individual support staff working with people with autism, one of the areas I spend a lot of time on in my training sessions is Sensory Integrative Dysfunction. I encourage all of my staff to undertake a Sensory Integrative Assessment with every client/consumer we work with, right from the start. In this article, I refer to the "child" but obviously, a teen or adult with ASD may also experience sensory issues, so please notice these issues when working with anyone with ASD, regardless of age.
It is not all that complicated to assess or to understand. Start by thinking about the sensory channels we all have. Typically, we might experience mild variations in our sensory processing. On a bright day, some of us are not comfortable unless we wear sunglasses. Others find no need to wear sun glasses. Some people can tolerate wearing all fabrics, but others may feel uncomfortable in wools and feel itchy. Some may like bland foods, other may love to add exotic or hot spices to enjoy their food. These are all typical variations.
But people with autism may have sensory experiences that are dramatically exaggerated. The sound of a blender or vacuum cleaner can terrify some individuals with autism. Some people with autism won't eat foods that touch each other on the plate or are certain colors or textures. Some people don't want to be touched, others will hug others so fully, it can feel like an assault. The list is endless. Later in this article, I offer many tips on how to do a more complete assessment.
To understand if a person with autism has sensory integrative issues, if the person is non-verbal, you will have to interview the person with ASD's parents, caretakers and teachers. Collectively, they will notice if certain foods are refused, if certain lighting in a room helps or hinders the person's experience, if certain sounds create a reaction, if a physical act of affection is well received or refused. Start making a list in each category: sight,/lighting; hearing/sound,; smells, tastes; physical sensations/active or limp body tone. Depending on the severity of the person with ASD's reaction to these sensory experiences (and also the lack of reaction as well) you will have completed a sensory integrative assessment that will explain so much. Once you understand these issues as provocations, you can either adapt the environment to minimize some of these experiences, or you can try methods to desensitize the individual (I will not go into this technique in this article.
Some of what you will read below comes from my own experience as a trainer, and some material comes from the following books and authors:
From: A Parent’s guide to Autism, Charles Hart, Simon and Schuster
From: Overview of Autism, Stephen M. Edelson, Ph.D, ASA Resource Library
From: Sensory Integration, Michael Abraham, McGraw-Hill Children’s Publishing
Autism is the term to describe a variety of neurological problems that affect thought, perception, and attention. This disability can block, delay, or distort signals from the eyes, the ears, and other sensory organs. This usually weakens a person’s ability to interact with other people, either through social activity or using communication skills such as speech.
Sensory Impairments:
Many individuals with autism seem to have impairments in one or more of their senses. This impairment can involve the auditory, visual, tactile, taste, vestibular, olfactory (smell) and proprioceptive senses (perception about our bodies condition or perception of our body in space). These senses may be hypersensitive (more excitable), hyposensitive (less than normal responsiveness), or may result in the person experiencing interference such as in the case of tinnitus, ( a persistent ringing or bussing in the ears). As a result, it may be difficult for individuals with autism to process incoming sensory information properly.
Sensory impairments may also make it difficult for the individual to withstand normal stimulation. For example, some individuals with autism are tactilely defensive and avoid all forms of body contact. Others, in contrast, have little or no tactile pain sensitivity. Furthermore, some people with autism seen to “crave” deep pressure. Another example of sensory abnormalities is hypersensitive hearing.
Approximately 40% of individual with autism experience discomfort when exposed to certain sounds or frequencies. These individuals will cover their ears and/or tantrum after hearing sounds such as a baby’s cry or the sound of a motor (hair dyer, vacuum cleaner, blender, power tools, etc.) In contrast, some parents suspect their children of being deaf because they appear unresponsive to sounds. Children with autism can also exhibit both). Auditory integration training, (listening to processed music in head phones for ten hours) is an intervention which is often used to reduce these sensitivities. Visual training is another sensory intervention designed to normalize one’s vision. There are several different methods of visual training. One popular program, developed by Dr. Melvin Kaplan, involves wearing ambient (prism) lenses and performing movement exercises which appear to reorganize and normalize the visual system.
Sensory integration techniques are often used to treat dysfunctional tactile, vestibular, and proprioceptive senses. Some of the techniques involve swinging a child on a swing in various ways to help normalize the vestibular sense and rubbing different textures on the skin, or brushing the skin to normalize the tactile sense. Joint compression techniques are used, weighted vests are used and Dr. Temple Grandin, (who herself has autism) developed a hug machine which provides individuals with deep pressure which appears to have a calming effect on the person.
Decoding and regulating sensory information, however, can be challenging and overwhelming for children with sensory integration (SI) dysfunction.
Children with SI dysfunction have a hard time knowing which sensory information is important and which is irrelevant. For them, adaptation does not take place naturally. They register sensations inconsistently, day in and day out. Sone days they appear to be focused, but on others they are not even aware of the task. These children simply do not have the efficient kind of brain functions that enable most people to be consistent from way day to another.
What is Sensory Integration?
The central nervous system develops after birth in response to incoming stimulation through the five senses. For example, the sense of space–the knowledge of where the limbs and trunk are and what they are doing–is critical to any developing child. For children with SI problems, this sense may not be intact. They have an irregularity in brain function. In the realm of tactile sense, for example, input from the touch of other people and objects of all kinds may not be processed or modulated correctly through the central nervous system. These children seem unable to organize tactile sensations, let alone coordinate them well with vision and hearing.The term ‘sensory integration dysfunction’ is used to characterize this disability. SSI may present itself in cognitive, motor, social/emotional, speech/language, or attention disorders.Children with SI dysfunction may be unable to respond to sensory information or to learn and organize accurately what they need to do in school or at home.
Sensory-Motor Integration Skills:
Equilibrium: refers to body movements or shifts to maintain or regain balance. The movement can be small, such as maintaining a sitting position in a car that is turning a corner, or large, such as protecting the body from a fall by using one’s arms and hands.
Kinesthetic: or proprioception pertains to information from inside the body–especially from muscles, joints and ligaments–about the body’s condition and position in space. It is the internal awareness about our body parts that allows us to perform tasks with coordination. Co-contraction involves activity of muscles on both sides of a joint contracting together. Co-contraction is a type of joint stability and is very important for coordinated movements. Motor Planning: refers to a persons ability to organize, plan, and then execute new and unpracticed motor tasks. The sensory systems, especially tactile, are of prime importance in motor planning.
Tactile: refers to the sensory messages received through our skin. Tactile information is a basis for learning about external objects as well as the condition of our body. If this information is not precise, it can hinder learning and coordination.
Vestibular: the vestibular mechanism is located in the inner ear and is activated by movement or by changing one’s head position. The vestibular system, o coordination with the kinesthetic and visual systems, directs the centralnervous system to the position in space and tot he force of gravity so the child can maintain equilibrium. Maintaining equilibrium is a result of a functioning vestibular system. Practice in this area promotes more efficient movement, balance, equilibrium, and vestibular processing and integration.
Bilateral Motor Coordination: is the ability to coordinate both sides of one’s body. Movements can beeither reciprocal or bilateral. Bilateral motor coordination can be achieved when tactile and kinesthetic information is processed.
Compromised Auditory and Visual Input:
Part of the brain in the limbic system (which decides which sensory input is to be registered and brought to our attention) also decides whether a person will do something about that information. Research shows that this part may not be working well in the brains of children with SI dysfunction. They do not register observations that everyone else notices. More often than with other sensory inputs, auditory and visual inputs are ignored or not registered. Sometimes the child may over-register one sound and under-register another. Visually they may stare through people or avoid looking them in the eyes. However, sometimes their brains will decide to give the most careful and prolonged attention to tiny details, such as lines on the floor or a small break on the edge of a cookie. Many individuals with autism also have a narrow or focused attention span; this has been termed ‘stimulus over selectivity’. Basically, their attention is focused on only one, irrelevant, aspect of an object. For example, they may focus on the color of a utensil, and ignore other aspects of the shape. In this case, it may be difficult for a child to discriminate between a fork or a spoon if he/she attends only to the color. Since attention is the first stage in processing information, failure to attend to the relevant aspects of an object or person may limit one’s ability to learn about objects and people in one’s environment.
Imagine trying to learn when sensations feel like an endless series of magician’s tricks.When poor sensory processing exists, children pay little attention or may overreact to a given task. They have little or no interest in doing things that are purposeful or constructive. Often these children are in motion. They may need to spin. These children may alternately avoid or covet touch, which in turn puts them in a state of motion. Often these children will not acknowledge levels of pain when experiencing a bump or a fall unless it is very intense. Some children are overly sensitive to the texture of things. They may resist certain foods because they don’t like the feel, smell, or taste. They may not be able to register certain odors; conversely, they may overreact to certain odors (and insist on smelling people closely). They may lack a sense of taste or require spicy/sour tastes.
Sensory input through muscles and joints may be greater for these children than through their eyes and ears. Pulling and pushing their arms and legs at the joints appears to feel satisfying. This important proprioceptive information helps to ground the children and gives them a feeling of security as the strong sensations are registered in their brains. These children may seek movement and vestibular stimulation strenuously or reject it entirely. Neither response is normal.
In the early days, before psychiatrists understood the neurological nature of autism, they thought patients had escaped into their minds to shut out the world. That theory has since been disproved, but many still speak in those terms! Why? Because the gestures and appearance of people with autism “look like” escapism and isolation. Many however, avoid eye contact, because they don’t recognize subtle signals of interest or attention in the gaze of others. If we had visual processing problems, we might ignore eye contact too. Perhaps children with autism avoid affection or eye contact because they respond differently to common sensations like a soft touch on the arm or the sight of a smile, or the sound of a lullaby being sung. Unbeknownst to their caretakers, they may hear singing as chalk screeching down a blackboard or feel touch as electricity, or translate a toothy smile as a hostile growl.
An individual with autism may have unusual responses to any and all of the five basic senses. A child who is hyper-sensitive to sound may find household noises and every day sounds painfully loud, even frightening.
Ineffective Modulation:
Modulation is the brain’s regulation of its own activity and involves helping neural messages to produce more of a response, inhibiting other messages to reduce extraneous activity (overflow). In some children, their brains fail to vary the intensity of vestibular sensations (e.g., spinning, jumping, swinging) and touch. In turn, these children can resist movement and become insecure because they cannot control sensation. They can become extremely anxious about their relationship to gravity and space. With sensory processing problems, it is understandable that when new experiences are presented, these children may react with alarm and resistance. Some children may have so much trouble registering the spacial elements of their environments that they can be upset whenever anything is changed in a room at home or at school.
Preparing the Environment:
Prepare the room with as little sensory stimulation as possible.
Reduce the number of papers on the walls, reduce hanging projects, reduce noise levels, be aware of/avoid flourescent lighting and intense sunlight through the windows(filter if necessary with sheers or shades), (consider other light bulb replacements, natural lighting, spot incandescent lamps etc.)
Use neural colors on work stations (beige or off white) bright colors can be used sparingly and most effectively when they appear in contrast to a neutral background.
Present lessons at child’s eye-level for child’s orientation
Avoid “highs” within the learning atmosphere, rather strive toward a calming atmosphere.
Increase attention span by removing distracting objects within the visual field of the child (A cardboard screen can be used)
Don’t present equipment until after the verbal directions are given and the child is ready to use them. (Otherwise he child may be distracted by the materials and not listen to you)
Encourage children to help put the equipment away when done and develop responsible behaviors.
Interventions must strive to foster three things:
1. focus and concentration
2. engagement in the human world
3. two-way intentional communication
Pay attention to the child’s regulatory difficulties. Does the child learn best in the realms of visual, auditory, tactile, or vestibular stimuli. Is the child reactive or underactive to these stimuli?
READ: Sensory Integration, by Michael Abraham, McGraw-Hill Children’s Publishing (Addressing Learning Differences) pages 58-117 for SI activities to try to address all types of SI Dysfunctions.
See pages 48-51 for a Pre-Referral Motor Screening Checklist (helpful in identifying symptoms pointing to SI Dysfunctions and recommending an OT evaluation.
Use short, direct, simple instructions (try to get the child to “look at me, while I talk) put your face close to his/herd (but don't over do that approach if they refuse), use finger to point to your eyes to bring attention to your face.
Set up home with routines and orderly structure.
Allow free play periods and intermittent breaks.
Use music, a low tone, or slowly modulating light to signal closure (give time warnings, 5 minutes until we leave, 2 more minutes until we stop, etc.
Keep activities short to accommodate short attention spans.
Break down learning steps (chain/reverse chaining).
Repetition of skills allows the child to succeed.
Do activities that stimulate both sides of the body (‘Simon says, touch your right ear with your left hand’, balancing, crawling, jumping, running, swinging, climbing hand-over-hand, moving on a balance beam, using large manipulatives, or materials requiring two hands.
Do activities to develop upper arms and shoulders (helps with hands and finger coordination, such as fine-motor control for writing skills) Climbing on jungle gyms, wheel barrel walking, crawling through tunnels and under obstacles, working at the easel, making exaggerated arm movements during songs.
Through manipulation of small play objects, they learn to use their hands and fingers efficiently.
Children that have many opportunities to move their bodies in a predetermined sequence (as in an obstacle course or a movement song) are learning the abstract sequencing skills of beginning, middle, and end–how to order and plan, anticipate the next segment, and experience closure (these help on the abstract level for reading comprehension and creative thinking). Through large, full-body movements, they learn how to relate themselves to the space around them.
In summary, one of the best ways to get a complete assessment of sensory issues and also specific ways to respond to such dysfunctions is to seek out a consultation with an experienced occupational therapist that has broad experience in treating Sensory Integrative Dysfuntions and also experience in working with people with autism.
For more information on Sensory Integrative Dysfunctions, contact us at: www.myarchway.org
As a trainer of individual support staff working with people with autism, one of the areas I spend a lot of time on in my training sessions is Sensory Integrative Dysfunction. I encourage all of my staff to undertake a Sensory Integrative Assessment with every client/consumer we work with, right from the start. In this article, I refer to the "child" but obviously, a teen or adult with ASD may also experience sensory issues, so please notice these issues when working with anyone with ASD, regardless of age.
It is not all that complicated to assess or to understand. Start by thinking about the sensory channels we all have. Typically, we might experience mild variations in our sensory processing. On a bright day, some of us are not comfortable unless we wear sunglasses. Others find no need to wear sun glasses. Some people can tolerate wearing all fabrics, but others may feel uncomfortable in wools and feel itchy. Some may like bland foods, other may love to add exotic or hot spices to enjoy their food. These are all typical variations.
But people with autism may have sensory experiences that are dramatically exaggerated. The sound of a blender or vacuum cleaner can terrify some individuals with autism. Some people with autism won't eat foods that touch each other on the plate or are certain colors or textures. Some people don't want to be touched, others will hug others so fully, it can feel like an assault. The list is endless. Later in this article, I offer many tips on how to do a more complete assessment.
To understand if a person with autism has sensory integrative issues, if the person is non-verbal, you will have to interview the person with ASD's parents, caretakers and teachers. Collectively, they will notice if certain foods are refused, if certain lighting in a room helps or hinders the person's experience, if certain sounds create a reaction, if a physical act of affection is well received or refused. Start making a list in each category: sight,/lighting; hearing/sound,; smells, tastes; physical sensations/active or limp body tone. Depending on the severity of the person with ASD's reaction to these sensory experiences (and also the lack of reaction as well) you will have completed a sensory integrative assessment that will explain so much. Once you understand these issues as provocations, you can either adapt the environment to minimize some of these experiences, or you can try methods to desensitize the individual (I will not go into this technique in this article.
Some of what you will read below comes from my own experience as a trainer, and some material comes from the following books and authors:
From: A Parent’s guide to Autism, Charles Hart, Simon and Schuster
From: Overview of Autism, Stephen M. Edelson, Ph.D, ASA Resource Library
From: Sensory Integration, Michael Abraham, McGraw-Hill Children’s Publishing
Autism is the term to describe a variety of neurological problems that affect thought, perception, and attention. This disability can block, delay, or distort signals from the eyes, the ears, and other sensory organs. This usually weakens a person’s ability to interact with other people, either through social activity or using communication skills such as speech.
Sensory Impairments:
Many individuals with autism seem to have impairments in one or more of their senses. This impairment can involve the auditory, visual, tactile, taste, vestibular, olfactory (smell) and proprioceptive senses (perception about our bodies condition or perception of our body in space). These senses may be hypersensitive (more excitable), hyposensitive (less than normal responsiveness), or may result in the person experiencing interference such as in the case of tinnitus, ( a persistent ringing or bussing in the ears). As a result, it may be difficult for individuals with autism to process incoming sensory information properly.
Sensory impairments may also make it difficult for the individual to withstand normal stimulation. For example, some individuals with autism are tactilely defensive and avoid all forms of body contact. Others, in contrast, have little or no tactile pain sensitivity. Furthermore, some people with autism seen to “crave” deep pressure. Another example of sensory abnormalities is hypersensitive hearing.
Approximately 40% of individual with autism experience discomfort when exposed to certain sounds or frequencies. These individuals will cover their ears and/or tantrum after hearing sounds such as a baby’s cry or the sound of a motor (hair dyer, vacuum cleaner, blender, power tools, etc.) In contrast, some parents suspect their children of being deaf because they appear unresponsive to sounds. Children with autism can also exhibit both). Auditory integration training, (listening to processed music in head phones for ten hours) is an intervention which is often used to reduce these sensitivities. Visual training is another sensory intervention designed to normalize one’s vision. There are several different methods of visual training. One popular program, developed by Dr. Melvin Kaplan, involves wearing ambient (prism) lenses and performing movement exercises which appear to reorganize and normalize the visual system.
Sensory integration techniques are often used to treat dysfunctional tactile, vestibular, and proprioceptive senses. Some of the techniques involve swinging a child on a swing in various ways to help normalize the vestibular sense and rubbing different textures on the skin, or brushing the skin to normalize the tactile sense. Joint compression techniques are used, weighted vests are used and Dr. Temple Grandin, (who herself has autism) developed a hug machine which provides individuals with deep pressure which appears to have a calming effect on the person.
Decoding and regulating sensory information, however, can be challenging and overwhelming for children with sensory integration (SI) dysfunction.
Children with SI dysfunction have a hard time knowing which sensory information is important and which is irrelevant. For them, adaptation does not take place naturally. They register sensations inconsistently, day in and day out. Sone days they appear to be focused, but on others they are not even aware of the task. These children simply do not have the efficient kind of brain functions that enable most people to be consistent from way day to another.
What is Sensory Integration?
The central nervous system develops after birth in response to incoming stimulation through the five senses. For example, the sense of space–the knowledge of where the limbs and trunk are and what they are doing–is critical to any developing child. For children with SI problems, this sense may not be intact. They have an irregularity in brain function. In the realm of tactile sense, for example, input from the touch of other people and objects of all kinds may not be processed or modulated correctly through the central nervous system. These children seem unable to organize tactile sensations, let alone coordinate them well with vision and hearing.The term ‘sensory integration dysfunction’ is used to characterize this disability. SSI may present itself in cognitive, motor, social/emotional, speech/language, or attention disorders.Children with SI dysfunction may be unable to respond to sensory information or to learn and organize accurately what they need to do in school or at home.
Sensory-Motor Integration Skills:
Equilibrium: refers to body movements or shifts to maintain or regain balance. The movement can be small, such as maintaining a sitting position in a car that is turning a corner, or large, such as protecting the body from a fall by using one’s arms and hands.
Kinesthetic: or proprioception pertains to information from inside the body–especially from muscles, joints and ligaments–about the body’s condition and position in space. It is the internal awareness about our body parts that allows us to perform tasks with coordination. Co-contraction involves activity of muscles on both sides of a joint contracting together. Co-contraction is a type of joint stability and is very important for coordinated movements. Motor Planning: refers to a persons ability to organize, plan, and then execute new and unpracticed motor tasks. The sensory systems, especially tactile, are of prime importance in motor planning.
Tactile: refers to the sensory messages received through our skin. Tactile information is a basis for learning about external objects as well as the condition of our body. If this information is not precise, it can hinder learning and coordination.
Vestibular: the vestibular mechanism is located in the inner ear and is activated by movement or by changing one’s head position. The vestibular system, o coordination with the kinesthetic and visual systems, directs the centralnervous system to the position in space and tot he force of gravity so the child can maintain equilibrium. Maintaining equilibrium is a result of a functioning vestibular system. Practice in this area promotes more efficient movement, balance, equilibrium, and vestibular processing and integration.
Bilateral Motor Coordination: is the ability to coordinate both sides of one’s body. Movements can beeither reciprocal or bilateral. Bilateral motor coordination can be achieved when tactile and kinesthetic information is processed.
Compromised Auditory and Visual Input:
Part of the brain in the limbic system (which decides which sensory input is to be registered and brought to our attention) also decides whether a person will do something about that information. Research shows that this part may not be working well in the brains of children with SI dysfunction. They do not register observations that everyone else notices. More often than with other sensory inputs, auditory and visual inputs are ignored or not registered. Sometimes the child may over-register one sound and under-register another. Visually they may stare through people or avoid looking them in the eyes. However, sometimes their brains will decide to give the most careful and prolonged attention to tiny details, such as lines on the floor or a small break on the edge of a cookie. Many individuals with autism also have a narrow or focused attention span; this has been termed ‘stimulus over selectivity’. Basically, their attention is focused on only one, irrelevant, aspect of an object. For example, they may focus on the color of a utensil, and ignore other aspects of the shape. In this case, it may be difficult for a child to discriminate between a fork or a spoon if he/she attends only to the color. Since attention is the first stage in processing information, failure to attend to the relevant aspects of an object or person may limit one’s ability to learn about objects and people in one’s environment.
Imagine trying to learn when sensations feel like an endless series of magician’s tricks.When poor sensory processing exists, children pay little attention or may overreact to a given task. They have little or no interest in doing things that are purposeful or constructive. Often these children are in motion. They may need to spin. These children may alternately avoid or covet touch, which in turn puts them in a state of motion. Often these children will not acknowledge levels of pain when experiencing a bump or a fall unless it is very intense. Some children are overly sensitive to the texture of things. They may resist certain foods because they don’t like the feel, smell, or taste. They may not be able to register certain odors; conversely, they may overreact to certain odors (and insist on smelling people closely). They may lack a sense of taste or require spicy/sour tastes.
Sensory input through muscles and joints may be greater for these children than through their eyes and ears. Pulling and pushing their arms and legs at the joints appears to feel satisfying. This important proprioceptive information helps to ground the children and gives them a feeling of security as the strong sensations are registered in their brains. These children may seek movement and vestibular stimulation strenuously or reject it entirely. Neither response is normal.
In the early days, before psychiatrists understood the neurological nature of autism, they thought patients had escaped into their minds to shut out the world. That theory has since been disproved, but many still speak in those terms! Why? Because the gestures and appearance of people with autism “look like” escapism and isolation. Many however, avoid eye contact, because they don’t recognize subtle signals of interest or attention in the gaze of others. If we had visual processing problems, we might ignore eye contact too. Perhaps children with autism avoid affection or eye contact because they respond differently to common sensations like a soft touch on the arm or the sight of a smile, or the sound of a lullaby being sung. Unbeknownst to their caretakers, they may hear singing as chalk screeching down a blackboard or feel touch as electricity, or translate a toothy smile as a hostile growl.
An individual with autism may have unusual responses to any and all of the five basic senses. A child who is hyper-sensitive to sound may find household noises and every day sounds painfully loud, even frightening.
Ineffective Modulation:
Modulation is the brain’s regulation of its own activity and involves helping neural messages to produce more of a response, inhibiting other messages to reduce extraneous activity (overflow). In some children, their brains fail to vary the intensity of vestibular sensations (e.g., spinning, jumping, swinging) and touch. In turn, these children can resist movement and become insecure because they cannot control sensation. They can become extremely anxious about their relationship to gravity and space. With sensory processing problems, it is understandable that when new experiences are presented, these children may react with alarm and resistance. Some children may have so much trouble registering the spacial elements of their environments that they can be upset whenever anything is changed in a room at home or at school.
Preparing the Environment:
Prepare the room with as little sensory stimulation as possible.
Reduce the number of papers on the walls, reduce hanging projects, reduce noise levels, be aware of/avoid flourescent lighting and intense sunlight through the windows(filter if necessary with sheers or shades), (consider other light bulb replacements, natural lighting, spot incandescent lamps etc.)
Use neural colors on work stations (beige or off white) bright colors can be used sparingly and most effectively when they appear in contrast to a neutral background.
Present lessons at child’s eye-level for child’s orientation
Avoid “highs” within the learning atmosphere, rather strive toward a calming atmosphere.
Increase attention span by removing distracting objects within the visual field of the child (A cardboard screen can be used)
Don’t present equipment until after the verbal directions are given and the child is ready to use them. (Otherwise he child may be distracted by the materials and not listen to you)
Encourage children to help put the equipment away when done and develop responsible behaviors.
Interventions must strive to foster three things:
1. focus and concentration
2. engagement in the human world
3. two-way intentional communication
Pay attention to the child’s regulatory difficulties. Does the child learn best in the realms of visual, auditory, tactile, or vestibular stimuli. Is the child reactive or underactive to these stimuli?
READ: Sensory Integration, by Michael Abraham, McGraw-Hill Children’s Publishing (Addressing Learning Differences) pages 58-117 for SI activities to try to address all types of SI Dysfunctions.
See pages 48-51 for a Pre-Referral Motor Screening Checklist (helpful in identifying symptoms pointing to SI Dysfunctions and recommending an OT evaluation.
Use short, direct, simple instructions (try to get the child to “look at me, while I talk) put your face close to his/herd (but don't over do that approach if they refuse), use finger to point to your eyes to bring attention to your face.
Set up home with routines and orderly structure.
Allow free play periods and intermittent breaks.
Use music, a low tone, or slowly modulating light to signal closure (give time warnings, 5 minutes until we leave, 2 more minutes until we stop, etc.
Keep activities short to accommodate short attention spans.
Break down learning steps (chain/reverse chaining).
Repetition of skills allows the child to succeed.
Do activities that stimulate both sides of the body (‘Simon says, touch your right ear with your left hand’, balancing, crawling, jumping, running, swinging, climbing hand-over-hand, moving on a balance beam, using large manipulatives, or materials requiring two hands.
Do activities to develop upper arms and shoulders (helps with hands and finger coordination, such as fine-motor control for writing skills) Climbing on jungle gyms, wheel barrel walking, crawling through tunnels and under obstacles, working at the easel, making exaggerated arm movements during songs.
Through manipulation of small play objects, they learn to use their hands and fingers efficiently.
Children that have many opportunities to move their bodies in a predetermined sequence (as in an obstacle course or a movement song) are learning the abstract sequencing skills of beginning, middle, and end–how to order and plan, anticipate the next segment, and experience closure (these help on the abstract level for reading comprehension and creative thinking). Through large, full-body movements, they learn how to relate themselves to the space around them.
In summary, one of the best ways to get a complete assessment of sensory issues and also specific ways to respond to such dysfunctions is to seek out a consultation with an experienced occupational therapist that has broad experience in treating Sensory Integrative Dysfuntions and also experience in working with people with autism.
For more information on Sensory Integrative Dysfunctions, contact us at: www.myarchway.org
Autism Parents: Stess Hormones in our Bodies can be Counteracted
To learn other ways you can reduce your stress levels and prepare you better for parenting loved ones with autism throughout the lifespan, go to www.myarchway.org
This article deals with the many triggers or events we experience each and every day that cause stress reactions in all of us. It is not possible to really understand stress, without understanding the physical responses caused by "fight or flight", a process that creates a chain reaction in our body chemistry. Following this article, I will soon be submitting an article that will discuss the many actions and activities we can undertake each day that will counteract the stress hormones and provide antidotes when done on a regular basis. So stay tuned for Antidotes to Stress.
From: MIND\BODY EDUCATION CENTER (excellent articles on fight or flight)
Fight or Flight is the fundamental physiologic response that forms the foundation of modern day stress medicine; It is our body’s primitive, automatic, in-born response that prepares the body to “fight or “flee” from perceived attack, harm, or threat to our survival (or when a demand is placed upon us);
Discovered by Harvard Physiologist Walter Cannon, this response is hard-wired into our brains and represents a genetic wisdom designed to protect us from bodily harm;
Once a threat is perceived, an alarm goes off in an area of the brain called the hypothalamus, which-when-stimulated, initiates a sequence of nerve cell firing and chemical releases that prepares our body for running or fighting;
This alarm sends a message to our adrenal glands and chemicals like adrenaline, noradrenaline, and cortisol are released into our bloodstream. Within seconds, we can run faster, hit harder, see better, hear more acutely, think faster, and jump higher;
These nerve cell firing and chemical release cause our bodies to undergo a series of dramatic changes:
-Our heart rate increases 2 to 3 times the normal speed;
-Blood is shunted away from the digestive tract and directed into muscles and limbs
-Blood is drawn away from extremities and concentrates in deep muscle groups (which require extra fuel for running and fighting);
-Tiny blood vessels under the surface of our skin close down (so we can sustain surface wounds and not bleed to death)...sending blood pressure soaring;
-Pupils dilate; our awareness intensifies, our sight sharpens, our impulse quickens;-Jaw clenches;
-Muscle tension increases;-Adrenaline, sugar, and fat pour into the bloodstream (just in case we need extra fuel)
-Breathing shifts from slow, deep, diaphragmatic breathing to shallow chest breathing;
-Our perception of pain diminishes;
-When we become “hyper-vigilant and release a powerful chemical called cortisol: blood pressure rises slowly and steadily; we begin to retain vital chemicals such as sodium; metabolism drops; if necessary, excess waste is eliminated to make us lighter; gastric acid increases to maximize the calories we get from food; blood clotting agents are released in our bloodstream; energy is diverted from the immune system-white blood cells are lowered and our immune system decreases it’s effectiveness;
-Non-essentials such as sex hormones are suppressed.
On a daily basis, toxic stress hormones flow through our bodies for events that pose no threat to our survival; Unnecessary activation of the fight or flight response will wear the body out, and if you activate this response over and over...you will begin to experience symptoms;
CHRONIC STRESS = CHRONIC VIGILANCE: The body prepares for the long-term challenge.
In our early ancestors, this was in response to climatic catastrophe, depletion of vital resources, long-term struggle, displacement (or trying not to get eaten by a saber-toothed tiger);
For most of us, real physical danger or environmental catastrophes are rare events, never-the-less, “hot reactors” code our every day life stresses, as if we were under threat of starvation or as if we were dinosaur bait.
1001 small stressors each day set off our alarms for the fight or flight response to occur. This happens whether we like it or not. It is automatic.
-We have to sit in traffic and just “deal with it”;
-We have to wait until the bank opens to “handle” a bounced check;
-We have to wait for a chronically late school bus, first thing each morning;
-We worry and anticipate future events that never materialize;
-Six categories of stressors: environmental, social, institutional, self-imposed, daily hassles, and life changes/events;
-Dealing with the kids;
-Friendly competition in sports and leisure activities such as martial arts;
-Completing a work assignment on schedule;
All these stressors can trigger astronomical blood pressure levels because or the hard-wired fight or flight response. There is overwhelming evidence that there is a cumulative buildup of stress hormones. If not properly metabolized over time, excessive stress can lead to disorders of our autonomic nervous system (causing headaches, irritable bowel syndrome, high blood pressure) and disorders of our hormonal and immune systems (creating susceptibility to infection, chronic fatigue, depression, and autoimmune diseases like rheumatoid arthritis, lupus, and allergies).
To protect ourselves, we must pay attention to signals telling us whether we are in fight or flight: tension in our muscles, headaches, upset stomach, racing heartbeat, deep sighing, shallow breathing, anxiety, poor concentration, eye twitching, teeth grinding; and depression, frustration, anger, sadness, and fear.
Here is one of the many remedies that counteract the hormones related to stress: 20 minutes of undivided, intensive exercise that makes you perspire.
Posted by Karen Kaye Beall
This article deals with the many triggers or events we experience each and every day that cause stress reactions in all of us. It is not possible to really understand stress, without understanding the physical responses caused by "fight or flight", a process that creates a chain reaction in our body chemistry. Following this article, I will soon be submitting an article that will discuss the many actions and activities we can undertake each day that will counteract the stress hormones and provide antidotes when done on a regular basis. So stay tuned for Antidotes to Stress.
From: MIND\BODY EDUCATION CENTER (excellent articles on fight or flight)
Fight or Flight is the fundamental physiologic response that forms the foundation of modern day stress medicine; It is our body’s primitive, automatic, in-born response that prepares the body to “fight or “flee” from perceived attack, harm, or threat to our survival (or when a demand is placed upon us);
Discovered by Harvard Physiologist Walter Cannon, this response is hard-wired into our brains and represents a genetic wisdom designed to protect us from bodily harm;
Once a threat is perceived, an alarm goes off in an area of the brain called the hypothalamus, which-when-stimulated, initiates a sequence of nerve cell firing and chemical releases that prepares our body for running or fighting;
This alarm sends a message to our adrenal glands and chemicals like adrenaline, noradrenaline, and cortisol are released into our bloodstream. Within seconds, we can run faster, hit harder, see better, hear more acutely, think faster, and jump higher;
These nerve cell firing and chemical release cause our bodies to undergo a series of dramatic changes:
-Our heart rate increases 2 to 3 times the normal speed;
-Blood is shunted away from the digestive tract and directed into muscles and limbs
-Blood is drawn away from extremities and concentrates in deep muscle groups (which require extra fuel for running and fighting);
-Tiny blood vessels under the surface of our skin close down (so we can sustain surface wounds and not bleed to death)...sending blood pressure soaring;
-Pupils dilate; our awareness intensifies, our sight sharpens, our impulse quickens;-Jaw clenches;
-Muscle tension increases;-Adrenaline, sugar, and fat pour into the bloodstream (just in case we need extra fuel)
-Breathing shifts from slow, deep, diaphragmatic breathing to shallow chest breathing;
-Our perception of pain diminishes;
-When we become “hyper-vigilant and release a powerful chemical called cortisol: blood pressure rises slowly and steadily; we begin to retain vital chemicals such as sodium; metabolism drops; if necessary, excess waste is eliminated to make us lighter; gastric acid increases to maximize the calories we get from food; blood clotting agents are released in our bloodstream; energy is diverted from the immune system-white blood cells are lowered and our immune system decreases it’s effectiveness;
-Non-essentials such as sex hormones are suppressed.
On a daily basis, toxic stress hormones flow through our bodies for events that pose no threat to our survival; Unnecessary activation of the fight or flight response will wear the body out, and if you activate this response over and over...you will begin to experience symptoms;
CHRONIC STRESS = CHRONIC VIGILANCE: The body prepares for the long-term challenge.
In our early ancestors, this was in response to climatic catastrophe, depletion of vital resources, long-term struggle, displacement (or trying not to get eaten by a saber-toothed tiger);
For most of us, real physical danger or environmental catastrophes are rare events, never-the-less, “hot reactors” code our every day life stresses, as if we were under threat of starvation or as if we were dinosaur bait.
1001 small stressors each day set off our alarms for the fight or flight response to occur. This happens whether we like it or not. It is automatic.
-We have to sit in traffic and just “deal with it”;
-We have to wait until the bank opens to “handle” a bounced check;
-We have to wait for a chronically late school bus, first thing each morning;
-We worry and anticipate future events that never materialize;
-Six categories of stressors: environmental, social, institutional, self-imposed, daily hassles, and life changes/events;
-Dealing with the kids;
-Friendly competition in sports and leisure activities such as martial arts;
-Completing a work assignment on schedule;
All these stressors can trigger astronomical blood pressure levels because or the hard-wired fight or flight response. There is overwhelming evidence that there is a cumulative buildup of stress hormones. If not properly metabolized over time, excessive stress can lead to disorders of our autonomic nervous system (causing headaches, irritable bowel syndrome, high blood pressure) and disorders of our hormonal and immune systems (creating susceptibility to infection, chronic fatigue, depression, and autoimmune diseases like rheumatoid arthritis, lupus, and allergies).
To protect ourselves, we must pay attention to signals telling us whether we are in fight or flight: tension in our muscles, headaches, upset stomach, racing heartbeat, deep sighing, shallow breathing, anxiety, poor concentration, eye twitching, teeth grinding; and depression, frustration, anger, sadness, and fear.
Here is one of the many remedies that counteract the hormones related to stress: 20 minutes of undivided, intensive exercise that makes you perspire.
Posted by Karen Kaye Beall
Autism Parents: Antidotes to Stress - Alpha Waves
Visit out website at www.myarchway.org
In a recent article, I discussed the process called “fight or flight” which is a chemical reaction in our bodies caused by the many stress events we experience each day. To release another group of natural chemicals in our body that work very effectively to counteract stress hormones, we must first understand a little about brain waves. Once we know something about brain waves, it becomes quickly apparent that people who experience huge amounts of stress would do themselves a favor to include activities in daily life that increase Alpha waves. Later on in this article, we will list many activities that increase Alpha waves.
A machine called an ELECTROENCEPHALOGRAM (EEG) measures four major brain waves; Delta, Theta, Alpha, and Beta.
DELTA: Is seen only in the deepest stages of sleep (sleep stages 3&4). It is the slowest oscillating waves 0-4 cycles per second. Problems with insomnia if Delta and Theta can’t be turned on.
THETA: Is seen in light sleep and drowsiness (sleep stages 1&2). 4-7 waves per second. Caffeine suppresses Theta and Alpha while promoting Beta
ALPHA: Is seen in wakefulness where there is a relaxed and effortless alertness. 8-13cycles per second.
-Stronger immune systems-Creative inspiration
-Peak performance
-No Alpha waves found in fear and anger
-No Alpha waves found in deep sleep
-Less anxiety
BETA: Is seen in highly stressful situations and where there is difficult mental concentration and focus. 13-40 cycles per second.
BRAIN WAVE STUDIES: Numerous brainwave studies of meditation established that meditators could exert profound control over their brain waves.
Dr. Herbert Benson's Relaxation Response is basically meditation in its simplest form. In the past 30 years, over 600 studies have been done on the effect of transcendental meditation (or any other meditation for that matter) and its positive effects in reducing stress. You can see some of those studies by doing a search on Transcendental Meditation and you will find those studies on their website. Herbert Benson, M.D., is the founder of the Mind/Body Institute.
Dr. Benson is a Professor of Medicine at Harvard Medical School. Dr. Benson is the author or co-author of more than 170 scientific publications and seven books. Dr. Benson is a pioneer in mind/body medicine, as well as in bringing spirituality and healing into medicine. Through his 35+ year career, he defined the relaxation response and continues to lead teaching and research into its efficacy in counteracting the harmful effects of stress. The recipient of numerous national and international awards, Dr. Benson lectures widely about mind/body medicine and the M/BMI's work. Go to his website: http://www.relaxationresponse.org/index.htm
If you want to feel less stress and anxiety, you should increase the amount of Alpha waves you experience.
Another fascinating study on stress was done at Cornell University and talks about the fact that our molecules have a built in memory of prior stress events and this is an important concept as it relates to prior incidents of fight or flight. The article is called Tuning The 'Fight-Or-Flight ' Response: Molecular Memory Of Stress Prompts Adrenaline Surges, Cornell Study Shows.
Another great article published in Megabrain Reports, May, 1994, by James V. Hardt, Ph.D, of the The Biocybernaut Institute, edited for the web is called Alpha Feedback Training May Be Closer To Zen Than To Yoga, Part 7 - continued from part 6.
MYSTIC THETA: Was a type of brain wave found in people who have consistently meditated for 21+ years.
Meditators with 21- 40 years experience demonstrated a new and non-drowsy type of Theta wave (Mystic Theta) which oscillates with Alpha waves and spreads from the back of the head to the frontal lobes.
Meditators with 6 -20 years experience showed Alpha waves spreading from the back of the head to the frontal lobes.
Research has determined that Alpha waves are present when you:
-Laugh: watch a funny movie (Norman Cousins “Anatomy of an Illness”)
-Listen to music-Walk in nature and beauty
-Smell flowers
-Walk by a babbling brook
-Get a massage
-Walk on a beach and listen to waves
-Pet puppies
-Go into a forest at night and hear nothing but the sound of crickets
-Take a warm, lightly scented bubble bath, Jacuzzi, hot tub
-Also drinking water helps reduce stress symptoms
So try and do some of these Alpha wave activities each day, along with practicing a simple form of meditation called the Relaxation Response by Dr. Benson and you will be reducing your stress greatly.
In a recent article, I discussed the process called “fight or flight” which is a chemical reaction in our bodies caused by the many stress events we experience each day. To release another group of natural chemicals in our body that work very effectively to counteract stress hormones, we must first understand a little about brain waves. Once we know something about brain waves, it becomes quickly apparent that people who experience huge amounts of stress would do themselves a favor to include activities in daily life that increase Alpha waves. Later on in this article, we will list many activities that increase Alpha waves.
A machine called an ELECTROENCEPHALOGRAM (EEG) measures four major brain waves; Delta, Theta, Alpha, and Beta.
DELTA: Is seen only in the deepest stages of sleep (sleep stages 3&4). It is the slowest oscillating waves 0-4 cycles per second. Problems with insomnia if Delta and Theta can’t be turned on.
THETA: Is seen in light sleep and drowsiness (sleep stages 1&2). 4-7 waves per second. Caffeine suppresses Theta and Alpha while promoting Beta
ALPHA: Is seen in wakefulness where there is a relaxed and effortless alertness. 8-13cycles per second.
-Stronger immune systems-Creative inspiration
-Peak performance
-No Alpha waves found in fear and anger
-No Alpha waves found in deep sleep
-Less anxiety
BETA: Is seen in highly stressful situations and where there is difficult mental concentration and focus. 13-40 cycles per second.
BRAIN WAVE STUDIES: Numerous brainwave studies of meditation established that meditators could exert profound control over their brain waves.
Dr. Herbert Benson's Relaxation Response is basically meditation in its simplest form. In the past 30 years, over 600 studies have been done on the effect of transcendental meditation (or any other meditation for that matter) and its positive effects in reducing stress. You can see some of those studies by doing a search on Transcendental Meditation and you will find those studies on their website. Herbert Benson, M.D., is the founder of the Mind/Body Institute.
Dr. Benson is a Professor of Medicine at Harvard Medical School. Dr. Benson is the author or co-author of more than 170 scientific publications and seven books. Dr. Benson is a pioneer in mind/body medicine, as well as in bringing spirituality and healing into medicine. Through his 35+ year career, he defined the relaxation response and continues to lead teaching and research into its efficacy in counteracting the harmful effects of stress. The recipient of numerous national and international awards, Dr. Benson lectures widely about mind/body medicine and the M/BMI's work. Go to his website: http://www.relaxationresponse.org/index.htm
If you want to feel less stress and anxiety, you should increase the amount of Alpha waves you experience.
Another fascinating study on stress was done at Cornell University and talks about the fact that our molecules have a built in memory of prior stress events and this is an important concept as it relates to prior incidents of fight or flight. The article is called Tuning The 'Fight-Or-Flight ' Response: Molecular Memory Of Stress Prompts Adrenaline Surges, Cornell Study Shows.
Another great article published in Megabrain Reports, May, 1994, by James V. Hardt, Ph.D, of the The Biocybernaut Institute, edited for the web is called Alpha Feedback Training May Be Closer To Zen Than To Yoga, Part 7 - continued from part 6.
MYSTIC THETA: Was a type of brain wave found in people who have consistently meditated for 21+ years.
Meditators with 21- 40 years experience demonstrated a new and non-drowsy type of Theta wave (Mystic Theta) which oscillates with Alpha waves and spreads from the back of the head to the frontal lobes.
Meditators with 6 -20 years experience showed Alpha waves spreading from the back of the head to the frontal lobes.
Research has determined that Alpha waves are present when you:
-Laugh: watch a funny movie (Norman Cousins “Anatomy of an Illness”)
-Listen to music-Walk in nature and beauty
-Smell flowers
-Walk by a babbling brook
-Get a massage
-Walk on a beach and listen to waves
-Pet puppies
-Go into a forest at night and hear nothing but the sound of crickets
-Take a warm, lightly scented bubble bath, Jacuzzi, hot tub
-Also drinking water helps reduce stress symptoms
So try and do some of these Alpha wave activities each day, along with practicing a simple form of meditation called the Relaxation Response by Dr. Benson and you will be reducing your stress greatly.
Autism Housing: What are the Options?
Here we provide a description of the types of of group homes, supportive living, supervised living, farmstead programs, community living options, family teaching model, cooperatives, shared housing and other residential models. For a state by state listing of group homes and residential service providers, go to www.myarchway.org and to talk with other parents who want to discuss this topic, go to www.myarchway.ning.com
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
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