The person with autism spectrum disorder

For much more detail on the symptoms of autism, click here.  Autism is referred to as a “spectrum” disorder.  People with autism can be low, mid or even high functioning persons.  The main signs and symptoms of autism involve problems in the following areas:

Communication - both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)

Social - such as sharing emotions, understanding how others think and feel, and holding a conversation.  They have difficulty reading facial expressions or picking up social cues.

Stereotyped behaviors - Routines or repetitive behaviors such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways. Also unable to play or keep themselves occupied in a normal or typical fashion. Many experience sensory integrative dysfunction.

Each and every individual with autism certainly does not experience each symptom with the same severity. Different people with autism can have very different presenting symptoms.  Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features.  Within each of the key diagnostic categories, i.e., communication, social or behavioral, one person may have mild symptoms one of the groups, while another may have serious symptoms.  But they both have an autism spectrum disorder.

In general, high functioning consumers with autism (e.g., Asperger’s syndrome) are generally less likely than low or mid functioning consumers to require or seek placement in a residential program if their primary deficits tend to be more in the realm of social development and not in the management of day to day activities in the home or community.   For the most part, it is consumers with autism in the low to mid-range of functioning that will be the prime candidates for enrollment in a residential facility or group home. 

These consumers, especially those that would be considered mid-range on the autism spectrum, can show considerable variation in the strengths and competencies they possess and the challenges they face.  Besides social deficits, these consumers will, to varying degrees, be limited in their ability to engage in the activities of daily living (ADLs).  Likewise, there will be delays in language development and cognitive ability.  There will be inconsistent patterns of intellectual functioning and marked restriction of interests.   Consumers may over or under-react to stimuli in their environment and may engage in repetitive, ritualistic behaviors.   Consumers at the lower range of the spectrum will manifest a greater range and intensity of these complex conditions than mid-range consumers.   
A subset of consumers may demonstrate self-injurious or aggressive behaviors or be prone to running away or other forms of elopement.

Some individuals are referred to as high functioning in regard to certain symptoms, some are referred to as functioning in the mid-range of the spectrum, and some are considered to be low functioning, or on the low end of the spectrum.

For example, one individual may be unable to speak a single word what so ever, can handle his hygiene issues independently, and may never demonstrate aggression to others or never harm himself.  But they may hear the sound of a  vacuum cleaner or a power tool and the sound may terrify them to such an extent, that they may fall backwards on the floor or  they may run away suddenly in situations that they might get lost in.

Someone else may be able to speak, but presents with such severe self stimulatory behavior and little awareness of her surroundings, that she may be a danger to herself by unknowingly walking into traffic without looking both ways first.

Someone else may be able to learn the skills to do a job, but his socialization skills are extremely poor, and occasionally “out of the blue”, when needing to stand in a line, his frustration level may suddenly increase, and he loses impulse control and without provocation, he bites the person who is standing in front of him in line.

Because the Autism Spectrum is so Diverse, One Size Can Fit Many, But Not All

Perhaps there can be an innovative residential model available for national replication that embraces the position that One-Size-Fits-Many, but not One-Size-Fits-All. 

High functioning individuals with ASD and their families may choose independent living units, duplexes, and supervised living options within the community with few modifications needed.  See Types of Community Living Options and Residential Models

Some individuals with autism may be so low functioning,\ that they may require a highly individualized setting to be designed to meet their complex needs.  They might find it too restrictive to live in a shared living model, and may do best living alone but also have the support of a 1:1 staff/consumer ratio.

Other parents may be so concerned first and foremost with safety issues for their adult child with autism that they would feel most comfortable envisioning their loved one tucked away in the country in a Farmstead Model. Often isolated because of remote locations, farmsteads are sometimes criticized because 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.

In a study, consumers with autism were asked what factors they felt were important in a residential program and they gave the following responses:
-Access to amenities in the local community such as going to the post office, shopping or library;
-More choice in new staff;
-Compatibility and involvement with peers, e.g., getting to choose who to go on vacation with.
-Environmental factors within the home, such as being able to go to one’s own room and not being intruded upon or disturbed by others;
-Social life, e.g., being able to go out or stay in;
-Having the opportunity to develop new leisure interests;
-Getting help to communicate better.

ARCHway proposes a menu of community living models that allow for individuals at all points on the spectrum to be included. Community integration with the widest array of life experiences possible for our residents is key to the ARCHway models.  Our models blends some of the best features of a smaller group home model (structure, daily schedules provided and guidance in the skills of daily living, and staff that are trained in behavior management techniques), with the best features of  the Supervised Living model (home ownership, residents have say in programming and it is individualized and person-centered). 

Typically, a group home environment is usually a house or townhouse purchased as-is within the community, with little to no attention paid to sound insulation.  As a result, noisy residents are immediately and rightfully viewed as disruptive to others, and thus a multiplier effect may take place when one noisy resident, sets off a tantrum in another resident and quickly the situation at large can get out of control, a chain reaction occurs and objects can go flying.  Typical homes are not built to mitigate such behaviors and intrusions on the other residents on a regular basis.

ARCHway offers consultations on custom building homes  (or when necessary, renovate) in collaboration with George Braddock to ensure that nearly any individual on the autism spectrum can live there.  Here, individuals (some with complex behaviors) live together, but may not always choose to do things together.  Homes will be built reasonably close to public transportation and public meeting areas such as parks and pedestrian-friendly streets and situated in neighborhoods with mixed age groups, lifestyles, and economic circumstances for maximum chance of community acceptance.  The exterior of the home and its landscaping will be well maintained. Whenever possible, as much greenery will be included into the setting as possible, allowing for gardens and attractive grounds.  This ads to a feeling of “home” for many and allows a buffer space between neighbors for added privacy and sound intrusion issues. 

Because of what we refer to as a multiplier effect, it may not be wise to house three residents who are all on the lower end of the spectrum together. But having separate suites allows the inclusion of at least one individual on the lower end of the spectrum and maybe more, depending on presenting issues.

Our specialized residential models (under the guidance of George Braddock) will take pains to ensure that every setting is, to use one of George’s phrases, safe and sound.  To be safe, consumers need their supports to see and monitor their activities.  On an as-needed basis, we will include such items as: security systems, viewers, intercoms, simple locks, emergency communication systems and security lighting, and the property will be surrounded by attractive but difficult to climb fencing for privacy and security purposes. Other safety considerations include: doing away with slip and fall hazards; use of floor drains to prevent bathroom flooding accidents;  safe storage of cleaning supplies, removal of sharp corners, doing away with potentials for electric shocks or scolding, allowing for safe rescue or egress in the event of fire. Surfaces are (to use another of George’s phrases) “hardened” if necessary to prevent wear, tear or breakage and enable the house to be able to withstand heavy use, frequent cleaning and unconventional routines. Some surfaces may be “softened” when addressing issues for residents who may experience seizures frequently.

Attractive and comfortable common areas are designed to encourage group and social contacts, so potential relationships can develop and grow, but we also provide for privacy needs of residents, each having their own private suite with a spacious bedroom, sitting area, kitchenette, and private bath, for those who do not care to always participate with the rest of the group, always eat what the group is eating or for those who need quiet space to regroup or desensitize if needed.

Each room will have an abundance of natural light (but can be dimmed for those who may be bothered with sensory issue).  Private suites (including private laundry capabilities) surround common areas that include a central kitchen, dining room, living room area, study/therapy room/conference room, and exercise area.  There will be ample areas for storage. These useful room layouts and spaces will be conducive to relaxing, entertaining, or working.  Room layouts will take into consideration varying mobility capacities of residents or visitors. All areas will be spacious enough to allow for future lifespan issues should a resident require a wheel chair or scooter later in life or become medically involved. Whenever possible, outside spaces will take advantage of natural greenery, and allow for patios and gardens. One of the suites may be reserved for staff quarters.  These staff may be residential provider staff (who come and go on shifts) or are house parents (who live there permanently, such as the Teaching Family Model).  See Types of Community Living Options and Residential Models

When designing community living models, it is important to consider whether the individual has support needs that are consistent with someone who is higher functioning, middle of the spectrum or lower functioning.

  1. On the higher end of the autism spectrum (many having a diagnosis of Asperger’s Syndrome, but not all), some having received ongoing support and training as a child and therefore, learned to function relatively independently in terms of activities of daily living and spend their time somewhat productively as an adult, but likely with restrictive interests or obsessive interests. Some or all of their symptoms may be considered mild. They may have varying degrees of communication and social skills, and demonstrate some self-stimulatory behaviors, but may still lack safety awareness and may show some obsessive compulsive behaviors.  Consumers need their supports (to lesser degrees), to see and monitor their activities.  They still may require some lists and visual prompts for daily living.
  2. On the middle of the autism spectrum, usually meaning that they have some degree of severe communication problems, social problems, some self-stimulatory behavior, and “occasionally” demonstrates an aggressive action or “occasionally” does some action that may harm them.  Many will show some obsessive-compulsive traits. They also may need some help in activities of daily living, but also self sufficient to some degree. Most lack safety awareness. These individuals may test the strength of materials in their physical environment. Consumers need their supports to see and monitor their activities to assure safety. They will likely still need prompts and visual supports for daily living.
  3. On the low end of the spectrum: It is fair to say that those with ASD that frequently (rather than only occasionally) display severe problem behaviors including aggression, self injurious or disruptive behavior are referred to as being on the low end of the autism spectrum, regardless of their ability to communicate, socialize or function reasonably independently.  Some of these individuals may have been in facilities for many years, with little or nothing to do and some may have taken any number of combinations of prescribed drugs that rather than control these behaviors, may have increased some unacceptable and maladaptive behaviors.  When considering the stereotype of someone with autism who never acknowledges those around them, sits constantly rocking in a chair all day, and is a person needing help with many or most of his hygiene needs, it is likely fair characterize that person as being on the low end of the spectrum.  This individual lacks safety awareness.  These individuals will test the strength of materials in their physical environment. These consumers need their supports to see and monitor their activities to assure safety. They will likely still need frequent verbal and visual prompts for daily living.

It is important to consider that many of these individuals may or may not have received appropriate and consistent autism treatment interventions earlier as children and some may finally receive appropriate treatment and interventions as an adult for the very first time, and with these appropriate supports, may eventually find themselves functioning on higher parts of the spectrum.

It is sad to note that with a very few handful of exceptions, the currently existing residential services providers for adults with disabilities, still primarily exclude those on the lowest end of the autism spectrum and may also exclude those on the mid to lower end of the spectrum as well.  People with ASD are like anyone else.  When they are understood, when their needs and wants are addressed, and when they receive appropriate supports to live and grow, they progress.  This is also true for those on the lower end of the autism spectrum. We cannot afford to write anyone off.

Therefore, any new, comprehensive menu of models must be able to include people with ASD at all ends of the spectrum and in between as well.