Академический Документы
Профессиональный Документы
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Steven M. Kemple
Author Note
Steven M. Kemple, School of Library and Information Science, Kent State University.
1. Introduction
The Center for Disease Control Autism and Developmental Disabilities Monitoring
Network [CDC-ADDM] estimates that Autism Spectrum Disorder1 [ASD] affects approximately
1 in 110 children (CDC-ADDM, 2009). The same study reports a 3.6% increase in the
prevalence of ASD among 8-year-olds in the United States between 2004 and 2006. To put this
in perspective, children who turned 8 in 2006 will turn 13 in 2011. Over the next 2 years many
of these youth will enter high school. If this rate of increase holds true, we can (unscientifically)
project that between 2012 and 2013 the number of 8-year-olds affected with ASD in the United
States will approach 10%, a figure that will be applicable to adolescents by 2016. Granted this
hyperbolic projection may bear little correspondence to reality; suffice it to say over the course
of the next several years the prevalence of teenagers affected with ASD will only increase. With
this in mind, it is worth asking: Are teen and youth services librarians equipped and informed to
FUTURE 1: The number of autistic teens using libraries will increase dramatically.
FUTURE 2: The number of autistic teens not using libraries will increase dramatically.
1 Note: Throughout this paper “autism” and “autistic” will be used interchangeably with ASD to refer generally
to the disorders comprising Autism Spectrum Disorder. The more specific condition "Autistic Disorder" will
always be referred to as such.
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This paper aims to (1) provide a general overview of ASD with emphasis on its
characteristics in adolescence, (2) to describe the information needs of teenagers with ASD and
what steps librarians can take to ensure their fulfillment, and (3) to provoke cross-disciplinary
scholarly discourse on directly serving teenagers, as well as all individuals, affected by ASD.
Following the introduction (Section 1), sections 2.1 and 2.2 will provide a basic
introduction to ASD and its common characteristics, epidemiology, etc. Section 2.3 will focus
specifically on ASD in teenagers and how it differs from (and is similar to) ASD in children, as
well as comparing and contrasting teenagers with and without ASD. Section 3 is devoted
specifically to meeting the information needs of ASD teenagers in a public library setting, as well
as delivering a practical framework for effectively providing direct services with mindfulness of
contemporary visual art. This program aspires to facilitate the information needs of ASD teens
healthy community interaction. The end result will be a laboratory for asynchronous
boundary objects (Star & Griesemer, 1989) and relational aesthetics (Bourriaud, 2002). Though
fictitious, it is hoped such a description will inspire research and critical discourse toward a
2.1. Statistics
Between 2004 and 2006, the Center for Disease Control set out to study the prevalence of
ASD among several populations of 8-year-olds. They concluded that, in estimation, ASD affects
approximately 1 out of every 110 children in the United States (CDC-ADDM, 2006, 2009). In
line with previous reasoning, the study suggests ASDs occur with greater frequency in boys than
Although the study reported a higher occurrence in white non-Hispanic individuals (9.7
per 1,000 8-year-olds in 2006), the CDC does not believe race or ethnicity play a significant role
in either prevalence or risk of ASDs (CDC, 2010; CDC-ASSD, 2000). In the United States,
Autism spectrum disorders occur more or less similarly regardless of age, race, ethnicity, or
geographic region.
through public special education programs (CDC-ADDM, 2009, p 24). Although the study
points out that not all children with an ASD are recipient to special education, the Individuals
with Disabilities Education Act (IDEA) mandates “that all children with disabilities from birth
through 21 years of age” are entitled to “free, appropriate public education that emphasizes
The term autism spectrum disorder refers to a range of similar developmental disabilities.
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These include autistic disorder, Asperger's syndrome (AS), and pervasive development disorder-
not otherwise specified (PDD-NOS). ASDs fall into the broader category of pervasive
development disorders (PDDs). Both PDDs and ASDs tend to arise from early childhood and
are present throughout the life of the individual. The aforementioned CDC-ADDM study (2009)
observed that in the majority of cases parents reported seeing the full range of symptoms before
age 3.
Persons with an ASD may be severely disabled (low functioning) or seemingly normal,
albeit with a few eccentricities (high functioning). Although there certainly are common traits, a
telling catchphrase among those who regularly interact with autistic children says: “if you've
seen one child with autism, you've seen one child with autism.”
Despite all its variation, there are three hallmark traits: (1) diminished or impaired social
skills, (2) diminished or impaired communication skills, and (3) display of repetitive or restricted
(stereotyped) behavior. Persons affected by an ASD also tend to display a strong aversion and
sensitivity to environmental change. ASDs are frequently accompanied by other conditions such
ASDs are typically treated with a combination of cognitive and behavioral therapies,
medication, and specialized education. In the United States public schools play a major role in
the treatment and intervention of autism spectrum disorders, especially through the
Autistic disorder, or classic autism, spans a wide range of affectations. Persons with
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ASDs often struggle with spoken and written language; many do not begin speaking until much
later in childhood. When speech does develop it sometimes takes on a monotone quality and
may be punctuated by repetitive echoalic phrases. Impaired social skills often manifest as a
often the earliest indicator of autism. It is also common for individuals with autism to display
stereotyped behaviors. These may take the form of intense repetitive movements or utterances
with Asperger's syndrome exhibit the same core symptoms of classic autism except for a less
severe affliction of language and cognitive abilities. Sometimes persons with AS exhibit
remarkable abilities in these areas. Volkmar and Wiesmer (2009) tell of Hans Asperger,
observing a group of socially awkward boys in Vienna during the 1940s, whom he described as
“being rather pedantic 'little professors' who tended to intellectualize everything” (p 9).
superbly titled “From Tarantulas to Toilet Brushes: Understanding the Special Interest Areas of
Children and Youth With Asperger Syndrome” by Mary Ann Winter-Messiers is an excellent
diagnosis, but who do not meet the criteria of for a more specific ASD. Persons with PPD-NOS
tend to be higher functioning than is typical of persons with classic autism. Sometimes a young
child will be temporarily diagnosed with PPD-NOS until a more specific diagnosis can be
determined.
may suffer from additional developmental disabilities, epilepsy, etc., and varying degrees of
cognitive deficits. The most severe cases may require assistance in basic activities, such as
eating and dressing, and may never develop the ability to speak or understand language.
The high functioning individuals are often able to function as a regular member of
society. They may go to college, have careers, and visit libraries. Despite their seeming
normalcy, they will still experience the three primary characteristics of ASDs. They may lack the
ability to perceive emotions or empathize; often they will “get by” through mimicry of
acceptable social interaction. Temple Grandin, arguably the most well-known autist, famously
While higher functioning autistic individuals, especially those with Asperger's syndrome,
do not experience the same cognitive impairment as lower functioning persons, they may yet
struggle with mentally processing information. They often lack a capacity to understand
metaphors, for example; they may come across as being literal minded. They may repeat an
Although it is clear that persons with autism can say something relevant to self-
experience, it remains uncertain just how deeply they have a sense of themselves as selves, and
therefore how far their reflections are truly self-reflective (Hobson, et al., 2006, p 134).
Many persons with an ASD may lack the ability cognize other people as being
independently conscious entities. In many cases, it is no exaggeration to say that a person with
an ASD is not completely aware of the difference between people and objects. This inability to
empathize, in tandem with an aversion to change, is partly the cause of behavioral difficulties
2.2.3.3. Communication
Among the reason for Temple Grandin's fame is her first-person portrayal of what it is
like to be autistic, (Sacks, 2010). In her book Thinking in Pictures, Grandin describes her mental
processes in great detail. For many (but not all) persons affected by an ASD, thinking occurs on
communications. A 2009 study investigated the ability of ASD persons to correctly interpret
facial expressions. They found that individuals with ASD tend to interpret all expressions as
meaningful; in the case of neutral expressions they tended to read a negative emotion (Kuusikko,
et al.). The tendency to misinterpret (or in some cases not even recognize) facial expressions
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contributes to the social maladies many ASD individuals experience. This and other forms of
communicative inhibitions, in tandem with the impaired or nonexistent theory of mind, make
The outward behaviors associated with ASD add to this difficulty. Individuals may be
environment. Persons with an ASD generally avoid eye contact. These behaviors behaviors
reduction, Hobson, et al. describe an inability to "engage in emotionally patterned and mutually
common thread tracing autism spectrum disorder's "constellation of clinical features" (2006, p
153).
2.2.3.5. Sensitivities
with a fierce proclivity for sameness and consistency. Order and routine are very important for
affected individuals, who may be highly disturbed by any disruption or variation. Consistency in
This concept of sameness is found throughout the tendencies of ASD individuals. The
highly specific interests of individuals with Asperger's syndrome are an example how marked
In part because of its appearance early in life and the subsequent importance of
administering special care throughout childhood, the vast majority of literature on autism
spectrum disorders is concerned with young children. Incidentally, autism is associated with
children. This is perhaps unfortunate given that when autistic children grow up they are still
autistic. Schull and McDonough effectively make this observation in their 2010 analysis,
making the case that “research in the area of transition services is becoming critical” (p 87).
In many ways, teenagers with an ASD are just like other teenagers. With adolescence
comes increased social anxiety, a growing awareness of sexuality, emotional and identity
development, etc. Such changes are no less present in ASD teenagers. Just as is in neurotypical
adolescents is heightened interest in social concern, so to it is with teens on the spectrum. Schall
and McDonough note that individuals with ASD tend to (but don't always) see an improvement
in affected areas accompanied by a growing interest in peer interaction (p 82). Just as their
peers, ASD teens are prone to mood swings, loneliness, anxiety, and peer pressure; in short, ASD
However, it is often the case that as ASD teenagers become more aware of the peer
groups around them, they may too become hyper-aware of their relative abnormality. This leads
adolescent, studies suggest adolescents with ASD, particularly boys, are lonelier (Lasgaard,
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Nielsen, Eriksen, & Goossens, 2009) and more prone to depression and/or anxiety than their
This is not to say that the teenage years are entirely dismal for persons with ASD. During
adolescence, it is not untypical for individuals to make great strides in managing their
difficulties, especially in their communication skills. This is partly due to natural development
and partly to increased participation in social groups. Especially during teenage years, it tends to
be true that the more time is spent around neurotypical individuals the greater level of adjustment
will be attained (Schall & McDonough). Repetitive and stereotyped behaviors have also been
shown to subside considerably during adolescents. Schall and McDonough describe an increase
in secondary symptoms such as aggression and self injurious behavior spiking in early
Graetz and Spampinato (2008) describe the phenomenon of persons with Asperger's
syndrome sharing solidarity in their experiences, terming themselves “Aspies.” This term is
reflected in the recent highly recommended The Aspie Teen's Survival guide: Teen-to-Teen
Advice From A Young Man With Asperger's Syndrome (J.D. Kraus, 2010).
An important area of consideration for those who work with ASD teens is that of
transition. While this is generically true of adolescence, it has specific meaning in this context.
Except in the case of the most severely afflicted, it is hopeful that persons with an ASD will be
able to attain a level of autonomy as an adult. In high school, IEPs (individualized education
plan) may gradually introduce skill sets relevant to appropriate work environment and/or higher
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education. For example, some teens may go through work study type programs designed to
accommodate development or approximation of relevant social skills through trial and error.
Informally, interactions with neurotypical peers are tremendously beneficial toward this
end. Although speaking specifically of parents, Lasgaard, et al. (2010) describe the importance
of individuals who can facilitate the social interactions paramount to transitional development.
resources may help towards compensating the social impairments in adolescents with ASD”
Although several articles have been published discussing meeting the information needs
of autistic children, serving ASD teens in the library has just barely been addressed in LIS
literature. With an understanding of the developmental context, libraries can step up to serve the
The library is situated between the living room and the classroom; for teenagers with
ASD the library has an inherent capacity to serve as an important intermediary function. In order
to achieve this capacity, libraries must ensure they are accommodating to their particular needs
without sacrificing those of others. This may be accomplished through simple mindfulness and
programming.
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3.1.1. Environment
Above all else, the physical environment will make an enormous difference in the
library's ability to serve the information needs of its community on (and off) the autistic
spectrum. In “Hidden Gems: Teens with Autism in the Library,” Spring Lea Henry (2010) asks
Temple Grandin about the ideal library environment. Grandin's first observation is that large
spaces may cause anxiety in autistic teens (p 210). Generally, the most ASD appropriate library
should be quiet; a place of repose from undesirable social interactions. If possible, the space
should be illuminated with natural light. Fluorescent lighting should be avoided as it can be
The space should also accommodate the range of communicative styles and abilities.
avoided at all costs. The space should be arranged in discreet, modular sections; taxonomic
cubbyholes if you will. It should be a place that enables minimally interrupted, parallel
occurring, independent explorations; a place where ASD teens are free to pursue their
circumscribed interests.
and strengthening resources” (Lasgaard, et al., p 224). Howard Cannatella addresses the
relationship between “Place and Being” (2007) in this context, suggesting “...our aesthetic 'being
there' is rudimentary to any educational place. ... Dwelling penetrates into the heart of our
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positive awareness of a place” (624). This runs parallel to a Lynn Akin and Donna MacKinney's
for young autistic children. This deceptively simple practice calls for ensuring consistent
experiences from program to program so that the children can both learn and not feel threatened
children (no doubt something to avoid), shifting contexts reveals a deeper potential: the
knowledge.
3.1.2. Staff
The library would seem like an ideal place for someone who has the patience and tenacity
to explore every aspect of a given subject. Unfortunately, the traditional lack of autism-specific
training and support in libraries and other community settings has reduced access for individuals
Of course the environment alone will be of little benefit without mindful, knowledgeable
staff. As described earlier, teenagers with ASD tend to misread the emotional content of facial
expressions. Neutral expressions were shown to be of special difficulty, as they were often
perceived as negative or scornful (Kuusikko, et al., 2008). In terms of directly mediating ASD
teens' information needs with appropriate reference services, staff should be wary of
externalizing neutrality.
While it is unrealistic for librarians to walk around with an ear-to-ear grin (which might
ASD teens. Communication should be clear and precise. Henry (2010) quotes Temple Grandin's
direct advice to librarians interacting with autistic teens: “Don't be vague. Don't do subtle hints”
(p 210).
interactions between neurotypical and ASD individuals in the library. While micromanaging
civility risks disaster, staff should make a point to demonstrate appropriate interactions; teasing
Although limited to autistic children in libraries, Lynn & McKinney (2004) present an
adaptable framework for librarians mediating the information needs of ASD teens. One
technique they describe is called Related Readings, in which the librarian identifies a topic of
interest to the child, proactively providing conceptually similar materials. This group of
materials ideally span numerous formats; in the context of teen services, this technique may be
John Hughes, a Chicago Public Library Foundation Board Member, effectively put:
“Autism is complex. But we need to put the person first, before autism is even involved. We
need to look at the uniqueness of the person, just like we would with a 'typically' developing
child” (in Winson & Adams, 2010, p 16). This is consistent with the interpersonal nature
3.1.3. Collection
It is important that a ASD specific teen collection encompass a cross section of formats,
interests, and reading abilities. In selecting information resources for autistic teens, mindfulness
of the enormous differences in cognitive and reading abilities is imperative. It is also important
to refrain from inferring one ability from another. For example, an autistic teen who reads at a
third-grade level may posses an enormous intellect; likewise, a teen may effortlessly read aloud
predilection for pictorial/visual information, a strong teen ASD collection will consist of
numerous alternatives to text-based material. Collection development policies should stress not
only evaluation of aesthetic criteria but also the sophistication of content. Whereas with text-
based media it makes sense to talk about age/developmental appropriateness in terms of relative
complexity of sentence structure, pictures may contain layers of content and thus may be
appropriate for a wider audience. ASD individuals' tendency to prefer images is convenient from
this perspective; it is conceivable that the age-appropriateness and intellectual rigor of the ideal
While autistic teens may have many interests in common with their neurotypical peers,
they generally do not prefer reading narratives. The print collection should emphasize nonfiction
The collection should also include enough computers sufficient to designate for ASD
users. As described above, information technology emergence has been a boon to autistic
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persons, particularly for higher functioning individuals. Depending on the individuals, it may
become necessary to strike a balance between unlimited use and structured access. While it is
important they have free reign to explore the Web, engage in social networking, etc., access
should be structured so that one or several individuals do not monopolize devices. Given the
one-two punch of diminished social skills inherent to autism and the emergence of sexual urges
3.1.4. Programming
Grandin (in Henry, 2010) describes how library activities can serve as a safe haven from teasing,
pointing out that kids who tease are less likely to participate in library activities. She also
encourages activities that "will help them further their discipline of learning" (p 209), as well as
pairing teens with retiree mentors. "It doesn't matter if the technical skills are old. What you're
Although creating programs specifically for autistic teens may be the simplest way to
ensure appropriateness, doing so exclusively may breed divisiveness. Instead, staff should
autistic teenagers. Ideally, programming aimed specifically toward ASD teens will complement
welcoming them into general programming. It is precisely this sort of mindful, "neurodiverse"
4. Plan For A Collaborative Cross-Modal Contemporary Art Resource for ASD Teens
4.1. Scope
library to serve autistic teenagers in the best way possible. The scope of this discussion,
hypothesized that discursive synthesis of complimentary areas of expertise will be the most
effective way to serve this user group. This discussion will also serve to outline the vision for
this resource; when appropriate it will venture into specificity (e.g. a short annotated
The outward manifestation of this resource entails using contemporary visual art to assist
interactions. It is ideal for a large urban public library where the population is sufficient for pre-
established arts institutions as well as autism resources; however, it is hoped elements are
4.2. The Envisioned Space and the Role of ASD Professionals As Collaborators
It will consist of a space designed with autistic teens specifically in mind, but that will be
open to other library users. It will be separate enough from the rest of the library so as to
minimize ambient distractions, but not so much so that it mitigates divisiveness. Its design will
conform to the above discussion of environmental factors (e.g. intercom will be disabled, natural
and incandescent lighting will be used, etc.), the particulars of which will be established in
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collaboration with one or more representatives of local agencies who work with autistic teens
discreet "investigation spaces." Each of these smaller areas will contain subject-related
materials. Signage using a combination of pictures, text and color will denote the subject of each
investigation area, encoding the space's overall taxonomy. Topics will be arranged first by
subject (one general subject corresponding to each space), and then by format. Each
From the common area, library staff will be permitted to observe the use of the
investigation spaces with minimal imposition. The reference desk will be prominent and
centrally located so as to maximize clarity. All of the furniture in the common area will be
modular, including the reference desk, so function and practices can be modified as necessary.
Comfortable chairs, each illuminated by a floor lamp with a full-spectrum incandescent light
bulb, separated each by end tables, will subdivide the common area. Because the room will have
to be somewhat large, this will promote the experience of smallness; individual illumination and
separating end tables will enable each seat to be an autonomous vessel for exploration.
Proximity to other Autonomous Exploration Vessels (AEVs) will enable social interaction should
computer equipment will be grouped together in one part of the common area. Moreover, the
common area will include a selection of autism-specific resources for caretakers, accompanied
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by a directory of local services. It is possible this function could expand into a support network.
Inside of each investigation space will be several autonomous exploration vessels (two or
three depending on size). Lighting will be much dimmer here than in the common area so as to
As mentioned above, this will be a decidedly collaborative effort. The intent to employ
visual art as a means for assisting in mediating information needs was also mentioned. This will
be achieved through collaboration with local arts institutions, who will be periodically
responsible for augmenting the space with contemporary art. This aims to maximally achieve the
sort of "spark" Temple Grandin referred to when she said "What you're doing is getting the kid
turned on, lighting a spark!" (Henry, 2010, 209-210). With the characteristics and tendencies of
autistic persons, it is believed that punctuating the space in such a manner will contribute to
By sharing in this vision, the collaborators (representing art museums, alternative art
spaces, etc.) will choose work that enhances place-awareness. Site specific and/or interactive
installations are the ideal media for this end, and integrated correctly can open seductive
doorways into the collection. Given the presence of sensitivities to stimulation, works will pose
questions without commanding attention. Moreover, the rotation of work should be done with
care so as to avoid suddenly changing the environment, the result of which could be disastrous
Another possibility for this collaboration is the direct involvement of local visual artists
with the teens in the space. Even for neurotypical artists, the creative process is akin to the sort
Complementing the visual art augmenting the space will be a continually updated group
Adajania, N. (2009). Vitamin 3-D: New perspectives in sculpture and installation. London:
Phaidon Press.
The most recent addition to an excellent series of books published by Phaidon Press,
Vitamin 3-D surveys recent developments in installation and sculpture. This is included
(1) so as to have a complete series and (2) as supplement to Collins' Sculpture Today.
Unlike its series companions (Vitamin D, Vitamin P, and Vitamin Ph), Vitamin 3-D is
heavier on text than images. However, ASD teens will appreciate having access to the
Art21, Inc. (2003). Art 21: Art in the twenty-first century: Seasons 1 & 2. Alexandria, VA: PBS
Home Video.
Each episode of Art 21: Art in the 21st Century, a popular PBS television series, focuses
on the work of contemporary American artists by theme (e.g. identity, spirituality, etc.).
The episode is then broken into mini-documentaries looking at one artist and how his or
her work fits into that theme. The first-person focus , quick pace (for waning attention
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spans), and continuously superb quality (both informative and entertaining) make it an
ideal resource for introducing contemporary art to autistic teens. (This annotation applies
to seasons 3, 4 & 5)
Art 21, Inc. (2005). Art 21: Art in the twenty-first century: Seasons 3. Alexandria, VA: PBS
Home Video.
Art 21, Inc. (2007). Art 21: Art in the twenty-first century: Season 4. Alexandria, VA: PBS Home
Video.
Art 21, Inc. (2009). Art 21: Art in the twenty-first century: Season 5. Alexandria, VA: PBS Home
Video.
Sculpture Today is a visual survey of exactly what the name implies: contemporary
sculpture (a sub-field far broader than one might think). Its emphasis on images makes it
Consistent with many of the other books in this list, the images are not only visually
compelling, they pose deep questions. For autistic individuals who struggle with reading
comprehension, this will present a whole mode of discourse where ideas of varying
nuance and complexity are conveyed without words. The images are likewise engaging
in and of themselves without the need to delve into their intellectual content.
Cornell, L. (2009). Younger than Jesus: The generation book. New York: New Museum.
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Younger Than Jesus was an important curated group show at the New Museum in New
York City that looked at the work of emerging artists under the age of 33. This is an
excellent starting point for exploring the work of current artists for the autistic teen
Demos, T.J. (2007). Vitamin Ph: New perspectives in photography. London: Phaidon Press.
Of Phaidon Press's “Vitamin . . . ” books, this stands out as the best. The images are large
and compelling. It is the sort of book that truly has potential to spark interests and ideas.
Ganz, N., & Manco, T. (2009). Graffiti world: Street art from five continents. New York:
Abrams.
This book is nothing short of amazing. As the title implies, it is a visual survey
documenting brilliant graffiti from around the world. It could just as easily spark an
interest in urban studies or world geography as it could creating compelling works in the
genre.
ArtBabble is something of a YouTube for art museums. As an entry point into learning
about contemporary art, it is perhaps inexhaustible. What does “ArtBabble” mean? “1.
free flowing conversation, about art, for anyone. 2. a place where everyone is invited to
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http://www.artbabble.org/about).
New Museum of Contemporary Art. (2009). Younger than Jesus artist directory: The essential
A companion to Younger Than Jesus (annotated above), this is an exhaustive directory for
http://rhizome.org/artbase/featured/
Literally thousands of new media art projects accessible over the Web and designed to be
encountered on a computer. The works range from beautiful to subversive. For many
ASD teens inherently fond of technology, this is a first rate source for inspiration.
Rhodes, C. (2000). Outsider art: Spontaneous alternatives. New York: Thames & Hudson.
“Outsider art” generally refers to self-taught and/or folk artists whose art making practice
exists “outside” of the “accepted” art world (note: a distinction with which this paper's
author supremely disagrees). Within “outsider art” is a lively community of artists with
various mental and developmental disabilities. This is among the best surveys of
contemporary outsider art; in this case it has been selected for the prominent images.
survey of the latest strides in painting. As with its companions, it is an excellent source
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http://www.youtube.com/user/HennesyYoungman.
MFA candidate at the University of Pennsylvania), muses about contemporary art. The
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