Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 1
0. Abstract
How can rehabilitation counselors improve the quality of life for
persons with Asperger's Syndrome & ASD? Rehabilitation counselors
can improve the quality of life for persons with Asperger's
Syndrome & ASD by adjusting the QOL's baseline and benchmarks
relative to both the dreams and the limitations of the consumer.
First we’ll explore the nature of Asperger’s and Autism Spectrum
Disorders. Then we’ll look at a variety of benchmarks and
baselines indicators for quality of life in general, including
some general governmental benchmarks, philosophical
considerations, societal approaches of measure, most
authoritatively exemplified by those measurements utilized by our
governing bodies, and finally health care industry qualifiers of
health and life and finally our advocacy for our consumers and
clients as whole persons. In the case for Autism Spectrum
Disorder and Asperger's Disorder, some tests may play less of a
role than others. Then we’ll look at the natures of hopes and
dreams most often held by populations diagnosed with AS via an
analysis of interviews. Then we’ll discuss accommodations and
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 2
therapies for the functional limitations that are included in ASD
diagnosis. Disabled as able bodied, disability as a limited
condition, and methods of advocacy for the ASD diagnosed: Society
as a body, bigotry as an ailment, propaganda as a treatment.
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 3
I. Introduction
“How rehabilitation counselors can improve the quality of life
for persons with Asperger's Syndrome?" Rehabilitation counselors
can improve the quality of life for persons with Asperger's
Syndrome by adjusting the QOL's baseline and benchmarks relative
to both the dreams and the limitations of the consumer.
II. What the nature of Autism Spectrum Disorder & Asperger’s
Syndrome?
Asperger’s syndrome was first described by Hans Asperger in 1944
originally as “autistic psychopathy”. He distinguished it from
general autism by recognizing communicative impairments from the
age of three, whereas general ASD remained characterized with
delayed speech prior to three. In a 2008 article, Matson &
Wilkins described AS symptoms as including halted speaking,
intellectual myopic interests, a lack of “normalcy”. At the same
time, communicative despondence may not have been an issue,
except for in the case of sudden expressions of unhappiness. And
what seems quite subjective to be a symptom of medical literature
in my opinion, AS patients were described as not fully being
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 4
apart of the exchange in socially communicative interactions.
According to the points of diagnosis, the median prevalence of
Asperger’s Syndrome is about 3 in 10.000 cases. Which is lower
than autism which is diagnosed and five times a higher rate of 13
in 10, 000. (Matson & Wilkins 2008)
And again the WHO’s diagnostic is similar in identifying
Asperger’s Syndrome under four criteria: A) an insufficiency in
verbal, reciprocal, or cognitive growth. But only diagnosable if
the child has mastered single word expressions by the age of two
and that the child is using communicative phrases by three. Self
advocacy skills, adaptability and environmental interest by the
time the child is three should match their intellectual
development. But the child’s motor skills can be slow or clumsy
and okay to overlook. And unique preoccupations are also common
and fine to overlook; B) Qualitative problems in social
reciprocation are diagnosed under the criteria as autism; C) But
a significantly recurring interest in serial patted behavior,
interest and activity in an obsessive fashion is also evaluated
along the lines of autism; D) The symptoms are not inclusive of
pervasive developmental disorder, schizotypal disorder, simple
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 5
schizophrenia, reactive and disinhibited, obsessional personality
disorder, obsessive compulsive disorder (WHO 1992). But because
handing out complex diagnosis to anyone can result in huge social
stigma and difficulty in self-image, many of the co-morbid
factors are not directly related to the illness, but instead are
co-occurring. Issues such as depression, anxiety, Tourette’s
syndrome, ADHD and epilepsy all have a prevalence in Asperger’s
diagnosed populations.
III. What are proper QoL benchmarks for ASD?
Lets now look at a variety of benchmarks and baselines indicators
for quality of life in general, including some general
governmental benchmarks, philosophical considerations, societal
approaches of measure, most authoritatively exemplified by those
measurements utilized by our governing bodies, and finally health
care industry qualifiers of health and life and finally our
advocacy for our consumers and clients as whole persons. In the
case for Autism Spectrum Disorder and Asperger's Disorder, some
tests may play less of a role than others. Although Maslow’s
Needs Hierarchy is the basis of most childcare programs, adult
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 6
society seems to deviate from policies that acknowledge the
intrinsic needs Maslow’s scale centers upon.
The Organization for Economic Co-operation and Development (OECD)
Better Life Index assesses individuals from a variety of eight
factors, (1) Employment status, health status, work/ life
balance, education and skills, social connections, civic
engagement and governance, environmental quality and personal
security. Although the most popular standard for measuring
national development, the GDP that OECD releases is oriented
especially for a production model. Its an indicator of business
and industry much more than the human condition. The fixation
upon it indicates the reporters concern with capital and material
gains but it is not at all person-centered, nor driven. As a
sociological model it suits capitalizationism well, but for
person-centered capital, it still doesn't consider the personal
quality of life indicators for autonomous productivity and
personal capital. (Goldstein 2014) Robert Kennedy stated, "Gross
National Product does not allow for the health of our children,
the quality of their education, or the joy of their play," he
said. "It does not include the beauty of our poetry or the
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 7
strength of our marriages, the intelligence of our public debate,
or the integrity of our public officials." Looking across our
border to the north in Canada, the evaluation of QoL utilizes the
Canadian Well-Being Index (CIW) which evaluates on an eight point
basis of Community Vitality, Democratic engagement, education,
environment, health populations, leisure and culture, living
standards and time use. The qualities seem consistent with
environmental and social cues, perhaps reflecting the socialized
welfare nature of the Canadian welfare and education systems.
When QoL is evaluated in healthcare, the basis revolves much more
on an symptom orientation using various self-reported tests,
including the Nottingham Health Profile, Quality of Well Being
Scale, EuroQoL, Short Form 36, Sickness Impact Profile and Health
Utilities Index.
Another commonly used measure are Activities of Daily Living/
Instrumental ADL. A good example of an assessment scenario
utilizing ADL/IADSL goes as follows:
"A young woman with Asperger’s Syndrome dislikes shopping. She
says it is too noisy and busy. After further discussion, she and
her occupational therapist determined she had difficulty with
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 8
processing sensory information. The noises and sights at the mall
were overwhelming to her. Together, the young woman and the
occupational therapist designed a sensory program and
compensation techniques that would allow her to successfully
complete her shopping. The sensory program consisted of exercises
that, when done on a regular basis, helped her improve her
ability to process sensory input from her environment. The
compensation techniques included shopping at a smaller mall or
store at times that aren’t typically busy, and to practice a
social script. The social script is a way to role-play and
practice interaction before it actually occurs. This “rehearsal”
helps to increase one’s confidence and skills."
This last assessment of ADL/ IADL definitely is an effective
method of a consumer, VR counselor, occupational therapist team
approach. Although it seems clinical, in conjunction with an
occupational therapist, rather than just client hearsay or
managers and teachers, the capability of the consumer can be
neutrally assessed. Because both the consumers and their
supervisor or teacher may have conflicting narratives, as an
intercessor, a VR counselor can seek work with an OT to get an
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 9
understanding of the client’s capacity and levels of
accommodative need.
Dr. Robert Shalock, a scholar out of Canada, formulated a
specific benchmarking system after recognizing how funding for
welfare programs that help individuals is always subject to
limitation. He suggests that we all “focus on outcomes first”.
Because funding depends on program outcomes, he recommends ISPs
based on personal outcome scale (Shalock 2011).
V. Accommodations and therapies specific to the functional
limitations of the ASD diagnosis.
One of the important factors for AS diagnosed individuals is
often behavior management and educational interventions. A
plethora of recommendations exist that focus on socialization,
reduction of antisocial behaviors, communication strategies and
strengths based education systems and are echoed again and again.
An article by Valerie L. Gaus specifies five self-reported
difficulties of a pool of ASD diagnosees as 1)
social/interpersonal issues, 2) dating and sexuality, 3)
depression, 4) employment dissatisfaction, 5) frustration with
their living situation. Furthermore, she reports that families of
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 10
the individuals deal with six difficulties of 1) anger/disruptive
behaviors, 2) obsessions, compulsive behavior, intense/narrow
interests, 3) withdrawal/depression, 4) lack of
motivation/procrastination, 5) poor ADL skills/self-care and
organization, 6) odd behavior in the community/ legal problems
(Gaus 2010).
In a 2009 issue of European Child & Adolescent Psychiatry, myriad
recommendations were made starting with 1) educational
programming tailored to learning styles; 2) formal teaching of
social protocols; 3) information presented in proportion to its
whole context and in its discrete segments; 4) classes
administered in numbers that allow for intimate interaction; 5)
desegregation and incorporation into general peer group and
activities; 6) Adapting curriculum to accommodate for issues such
as speed, delivery and clarity; 7) Adaptive skills curricula of
scheduling, practicing and rehearsing, etc. should be implemented
and evaluated via the Vineland adaptive behavior scale (VABS); 8)
Improvement of organizational skills by use of scheduling,
scripts, rules, lists, etc.; 9) Context emphasized pragmatic
language skills via group class interaction (Volkmar 2005).
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 11
Recently for the Advanced Practicum in Cognitive Disability
course, taught by Dr. Degeneffe, I interviewed one of our
presenters who lives with an ASD diagnosis. In his presentation,
he presented a large amount of information about the “unspoken”
social rules and non-curricular environments in which there is a
lack of education or planning. He emphasized how we spend our
time in passing periods, during recess, after school and all of
the other unstructured interstices between school, work and
family life. He brought to light that events that enrich our
quality of life like dances, sports, clubs, recreation and
leisure activities are overlooked and remain exclusive and
elusive. I related deeply to what he had to say. My own
experience with subcultures and cultures is that most “rules” are
unspoken and our comprehension of these customs usually defines
our “intelligence”. Even living in Japan for a period of time, I
picked up droves of information on language and society. But even
working professionally in Japanese language and with Japanese
business and being technically effective, the discrimination
against the lack of “intuition” was strong. It would be very
interesting to do a demographic analysis on those diagnosed with
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 12
Asperger’s according to religion, ethnicity, gender, race, class
and political standing.
Educational and Employment Adaptations
There definitely has to be a development of laws that ensure
companies don't interfere with the constitutional rights of
cognitive developmentally diverse workforces and consumers. When
the Lehman Shock that rocked the international economy occurred
in 2008, the influence of predatory business structures became
very apparent. But it wasn’t the first or second time predatory
business and uninformed consumers destabilized national
economies. It of course is a recurring issue in markets like the
USA. The Great Depression, Enron, Solyndra… Somewhere in the
void of placing our hope against the limited time of our lives in
currency rather than ourselves, we are taken advantage of or take
advantage of others. We resort to pejorative excuses, calling the
distraught “stupid” or the ruthless “crooks”, neither side
realizing that the complicity in “unspoken rules” creates an
atmosphere that adversely affects the symbiotic basis of our
existence as human beings. Educational policy must show
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 13
consideration of learning capacities, styles and LD
discriminatory practices have to be abandoned.
Technological Accommodative Approaches
Information design plays an integral role. Often, so fixated on
the most prestigious specializations and intelligences, many
overlook the underlying importance of how information is
conveyed. From my years of experience in graphic design, basic
principles such as complimentary colors, hierarchy of importance
in font sizing according to the nature of information, clarity of
serif versus sans-serif fonts, the amount of text, boldness,
italicization, underlining, etc. all play integral roles in the
comprehension of visual information. Diversification of teaching
styles and information delivery is a vital part of affecting
educational policy in the favor of alleviating the conditions of
those diagnosed with AS and HFA. In an autobiographical novel by
Daniel Trammet--a person diagnosed with AS--speaks about his
coping process. He especially cited his abilities in synesthesia,
a predilection to comprehending multiple kinds of information at
the same time, in his case colors and numbers. An educational
policy that ensures that information delivery incorporates both
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 14
audio and visual learning styles Social education curriculum.
Virtually all of the articles I read that addressed
accommodations also included Cognitive Behavioral Therapies. Out
of my own experience teaching ESL, the national Japanese English
language curriculum I taught for three years emphasized
information delivery in a fashion of music, rhythm, highly
visible visuals, and absolutely concise delivery.
VR & Video Game Simulators
Although the pedagogical deliveries are very manual,
disintegrated and traditional, with the developments of video
gaming and virtual reality, I would imagine the integration of
virtual reality simulation will be the way of the future. Science
fiction authors have alluded to this technique as an educational
and training method in fictional properties like Star Trek, Marvel
Comic’s X-MEN and their “danger room” and many others. Technology
and improved graphics resolution provides many solutions and is
already available evident in products like Google Glass, Sony VR
headsets, and wall projected touch screen as manufactured by
companies such as Panasonic like the ones I used teaching ESL in
Japan. VR simulators to cover curricula of social and cultural
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 15
interaction can improve the comprehension of civics and more,
reducing the counseling hours necessitated and increasing the
potential number of sessions clients need for therapies and
retraining.
There is easily available evidence that supports that digital
simulations assist the learning development particularly of
students with autism. Some digital assessment and treatment
technology already in research and on the market include SMART-
games on the Pluff platform, which produced test results that
indicated it “Overall results suggest that Pluff is acceptable,
usable, and enjoyable for higher functioning children with ASD
and that the directions for operating the controller were easily
understandable” (Gotsis 2010).
Another digital platform is Small Steps Big Skills which was
reviewed in two studies, one in the Journal of Intellectual and
Developmental Disabilities and in the Journal in Education and Training in
Developmental Disabilities. The platform was said to have very
favorable results: “Findings from the beta version of the game
showed that linking these elements is an effective way to teach
skills, and results were published in two special education
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 16
journals. The first study results published in Education and
Training in Developmental Disabilities in December, 2009 showed
three elementary aged students with autism mastered all three
skills taught through a beta version of the video game and
generalized the skills to their natural environment. In a second
study published in Intellectual and Developmental Disabilities in
June, 2010 results showed three middle school-aged students with
intellectual disabilities increased the percentage of steps
completed in the correct order after playing the game” (Anonymous
2011). Conclusively, platforms like Small Steps Big Skills
utilize video modeling and the Pluff platform provides real-time
empathy reading simulation without the need of constant counselor
interaction for retraining purposes.
Applied Behavior Analysis
“Applied Behavior Analysis (ABA) is an evidenced-based treatment
for improving the functioning of children diagnosed with autism.
It addresses the core deficits of ASDs including verbal and non-
verbal communication, social interaction, restrictive repetitive
behaviors, inflexibility, and peer relationships, to name a few.
While it has been successfully used for over 30 years,
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 17
modifications and improvements of the ABA techniques have created
a new look for classroom applications.” (Gotsis 2010)
Incidental Teaching
Another method is incidental teaching methodology which revolves
around the student’s or consumer’s initiation. The idea of
focusing on the focus of the ASD diagnosed person is obviously
much more person centered than critically analyzing their are of
interest and instead using it as a learning mechanism. In the
technique, “The student initiates for an item either verbally or
gesturally, and the teacher responds in a manner that requires a
second initiation from the student. Following the second request,
the student is provided with the desired item. For instance if a
child points to a pencil, the teacher may respond by saying,
“What do you want?” triggering a second gesture to the pencil or
the verbalization, “pencil,” which is reinforced with the desired
item.”(Pelicari 2010)
Pivotal Response Training
Pivotal response training (PRT) is a set of instructional
strategies that are brief, specific, and focus on tasks chosen by
the child. PRT also utilizes contingent reinforcement directly
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 18
related to the desired behavior and attempts at engaging in the
desired behavior. For instance, if a student demonstrates
interest in drawing, place materials in his or her view; if he or
she requests a “crayon,” provide the crayon and follow through
with a drawing activity. PRT has recently been shown to cause
significant improvement in toddlers (Pelicari 2010).
Picture Exchange Communication System
Another option is the PECS system which relies on visual
communication strategies. The implication of this in both
education and research for its use in more public applications
can definitely accommodate those who are more visual in their
learning predispositions. PECS very much assists in helping the
expression of people with ASD. One study indicates that PECS,
“can be utilized in the natural environment to teach learners how
to initiate communication and have their needs and wants met. It
utilizes pictures, single words, phrases, and sentences to help
bring about appropriate verbal and non-verbal communication
skills.” Much like Asian cultures that rely upon gestures like
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 19
bowing and pictographic symbols, visual communicative
accommodations are an effective methodology (Pelicari 2010).
Technology Aided Classroom Teaching
“Innovative uses of technologies are another “new look” strategy
for classroom intervention. One such device, Technology Assisted
Classroom Teaching (TACT), developed by The Center for
Neurological and Neurodevelopmental Health (CNNH) in Voorhees,
NJ, is a teacher-initiated remote behavior capture system with
access to professional support and expertise. This technology
utilizes a camera and a small computer to efficiently record
target behaviors, both antecedents and consequences, and also
acts as an aide in teaching new skills. Behavior and teaching can
be viewed in real time over Health Insurance Portability and
Accountability Act (HIPAA) compliant Internet portals, or can be
captured and reviewed at a later date by a behavior analyst or
other clinician. Teachers control the device, and data can be
collected as needed. Such an approach reduces any “reactance”
effects or distractions of an extra observer being physically in
the classroom, and is very cost efficient, as there are no travel
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 20
or other expenses of having a behavioral consultant attend in the
classroom—often when the target behavior does not occur. TACT
will also allow the Behavior Analyst to take data on a daily
basis and provide the necessary feedback fostering behavioral
progress and success in the classroom. TACT technology is viewed
confidentially and in compliance with laws and regulations.”
(Pelicari 2010)
VII. Conclusion: Advocate away from Stigma and Focus on
Psychosocially Responsible Public Policy.
In a great article that addresses the inherent biases often held
by those in places of privilege over those not--in this case
those who hold the stigma of being physiologically different--the
presumptions, anticipations and attitudes all expressed in our
narratives serves as a very explicit indicator of the harmony or
disharmony of our interaction. An excerpt that illustrated the
value of the minority versus minority interaction of LD
constituencies (the mother and child) versus the constituencies
of pedagogy (the teachers and administrators) is epitomized by
their narrative/ counter narrative.
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 21
"This dynamic, this narrative/counter narrative exchange, is
similar to the dynamic that birthed the LD category. The early LD
advocates described by Sleeter (1987) were responding to
oppressive narratives that they felt would have devalued their
children — narratives that would have stripped them of their
intelligence, their emotional stability, and/or their affiliation
with dominant cultural, narratives that would have associated
their privileged white offspring with the children of the poor
and the ethnically othered." (Hale 2010). The frustration is this
advocacy centers upon the crux of self-mastery of uncontrolled,
altered or still developing ability which requires patience and
accommodation. However, like many consumers of the VR counseling
field, they’re stuck in a home setting with parents overwhelmed
in dealing with the negative narrative of the public system
that’s often too busy to help and therefore stigmatizes the
individual. It’s a tragedy when consumers are intercepted by
prisons, institutions, etc. because their teachers and guardians
couldn’t adapt the system to them. Although there are extreme
cases in the failure of advocacy and the system itself failing to
serve physiological diversity of our population, there too are
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 22
highlights in the amazing advance and potential that can be
tapped via personalized learning programs and accommodations of
learning styles and physical capacities.
Hale’s article goes on to address the strongly pedagogically
rooted issues. The article acknowledges that… "the protagonist is
always the social standing of a child and his parents. The
antagonists are the ideological assumptions that underlie
schooling and the perceptions and biases of those in the school
community. The conflict is the struggle between competing views
of the child, the antagonistic view being that the child is lazy
or stupid and the parents' being an affirmation of their child's
positive essence. The plot, driven by the central conflict, moves
from incident to incident of difference, exposition, and shame
until finally the parents, drawing on resources only available to
the relatively privileged, enlist experts who wield the symbolic
power of science to inoculate their child from criticisms and
aspersions, while locating the cause of his difficulties within
him. The dénouement involves a change of identity, from "normal"
to disabled, from accused to excused. The whole process
establishes a rationale to which the parents can cling in moments
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 23
of doubt and conflict." As though the pedagogy is unaware that
they pursue a narrative in which the system wins and bankrupts
the individuals of difference rather than tapping into the
minefield of their potential. So accordingly in our field, our
role as VR counselors is to help channel the ability of our
clientele and consumers in order to make them heroic, in costume,
in ability, in society. Yet we also have the charge to be
reformers of society and improve the institutions into better
mechanisms of community, industry and culture.
Education and pedagogical cultural reform is the hinge that
determines the success of especially individuals with Asperger’s
Syndrome, if not all people diagnosed with HFA and other ASD.
There is an historical and social responsibility for correcting
humans rights violations and maintaining national productivity.
The integration of social cues education and the “unspoken rules”
of the education system allows us to maintain industrial
competitiveness with other external national education and
economies rather than internally against one another. This
advances the USA as a culture and as a civilization. Individuals
are essentially specialized neurons and education and medicine
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 24
are like the neurosystems for vocational deployment and
individual harnessing.
In a brief interview with ID advocates who work with people
overcoming ASD diagnosis, the emphasis on inclusion and against
exclusion is paramount. In interviewing Krystle Taylor, an
adjunct instructor for the College 2 Career Program for the San
Diego Community College District, she reiterated numerous times
“They’re just like anyone else with the same hopes and dreams as
everyone else” (personal communication, 27 April 2015). In
another conversation with Ms. Kay Freeman, a mother of a child
with autism, she explained to me that there are many families
that are fighting against time in preparing their autistic family
members for autonomous living. She says that vocations that
provide competitive compensation are integral. Menial labor jobs
are not an option, but more ideally jobs that are technical,
decentralized and tailored to their personalities. The San Diego
Autism Society--a one woman operation--supports families with a
resource list rich website, support groups and community outreach
(personal communications, May 1, 2015). The more I research ASD,
the more I realise that we’re all people with a system perhaps
Running Head: Quality of Life: Asperger’s Disorder & ASDBradford 25
too focused on the bottom line rather than who’s at the line with
us when we get there. One of the most touching deliveries of this
message that I read was riding the bus to teach ESL in Japan,
which read 緒緒緒緒「 」一 which translates to, “Together, we advance.”
VIII. Works Cited & Suggested Readings
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5
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Gaus, V. (2011). Adult asperger syndrome and the utility of
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Disorders. Retrieved from http://www.njea.org/news-and-
publications/njea-review/january-2010/classroom-strategies-for-
students-with-autistic-spectrum-disorders.
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Rhode, M. (2011). Asperger's syndrome: A mixed picture.
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[YouTube video]. Retrieved from https://www.youtube.com/watch?
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syndrome. Handbook of Autism and Pervasive Developmental Disorders, 88-125.
World Health Organization (1992). International classification of diseases:
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