What Should CWU’s Master Plan Be?
HIGH FUNCTIONING INDIVIDUALS ON THE
AUTISM SPECTRUM ATTENDING COLLEGE
BACKGROUND
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First, many higher-functioning adults on the autism
spectrum are never formally diagnosed and thereby
often do not qualify for services during their K-12 years.
Second, incidence of autism is increasing, making the
number of adults that are somewhere on the spectrum
and in need of support higher than ever before.
Third, higher-functioning adults on the autism spectrum
are enrolling in college and other post-secondary
training institutions at higher rates than ever before.
Fourth, although data aren’t available, there are some
who believe these students drop out at higher-thantypical rates because they aren’t adequately supported.
Transitions to Adulthood
AUTISM SPECTRUM DISORDER:
DIAGNOSIS
Both tables are from the Centers for Disease Control and Prevention Website
INCIDENCE OF ASPERGER’S SYNDROME
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Studies vary in their estimates of the incidence of
Asperger’s syndrome among children in the United
States from
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2 out of every 10,000 children to
30–40 of every 10,000 children have this condition.
Asperger's syndrome affects boys more often than
girls, and siblings of children with the disorder are at
increased risk.
DEFINITION AND CLASSIFICATION—DSM V
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Currently, autistic disorder and Asperger’s syndrome are
separately defined and classified.
However, in the upcoming revision to the Diagnostic and
Statistical Manual of Mental Disorders (DSM), the
diagnostic encyclopedia of American psychiatry, that’s
about to change.
Following are the criteria, which are anticipated to be
voted on in June, that are proposed for the combined
diagnosis, autism spectrum disorder.
DSM V – PROPOSED LANGUAGE
A. Persistent deficits in social communication and social
interaction across contexts, not accounted for by
general developmental delays, and manifested by all
three of the following:
1. Deficits in social-emotional reciprocity; ranging from
abnormal social approach and failure of normal
back-and-forth conversation, through reduced
sharing of interests, emotions, and affect and
response, to total lack of initiation of social
interaction,
DSM V – PROPOSED LANGUAGE
A. Persistent deficits in social communication and social
interaction across contexts, not accounted for by
general developmental delays, and manifested by all
three of the following:
2. Deficits in nonverbal communicative behaviors used
for social interaction; ranging from poorly integrated
verbal and nonverbal communication, through
abnormalities in eye contact and body language or
deficits in understanding and use of nonverbal
communication, to total lack of facial expression or
gestures.
DSM V – PROPOSED LANGUAGE
A. Persistent deficits in social communication and social
interaction across contexts, not accounted for by
general developmental delays, and manifested by all
three of the following:
3. Deficits in developing and maintaining relationships
appropriate to developmental level (beyond those
with caregivers); ranging from difficulties adjusting
behavior to suit different social contexts, through
difficulties in sharing imaginative play and in
making friends, to an apparent absence of interest
in people.
DSM V – PROPOSED LANGUAGE
B. Restricted, repetitive patterns of behavior, interests, or
activities as manifested by at least two of the
following:
1. Stereotyped or repetitive speech, motor
movements, or use of objects (such as simple
motor stereotypies, echolalia, repetitive use of
objects, or idiosyncratic phrases);
DSM V – PROPOSED LANGUAGE
B. Restricted, repetitive patterns of behavior, interests, or
activities as manifested by at least two of the
following:
2. Excessive adherence to routines, ritualized
patterns of verbal or nonverbal behavior, or
excessive resistance to change (such as motoric
rituals, insistence on same route or food, repetitive
questioning or extreme distress at small changes);
DSM V – PROPOSED LANGUAGE
B. Restricted, repetitive patterns of behavior, interests, or
activities as manifested by at least two of the
following:
3. Highly restricted, fixated interests that are
abnormal in intensity or focus (such as strong
attachment to or preoccupation with unusual
objects, excessively circumscribed or perseverative
interests);
DSM V – PROPOSED LANGUAGE
B. Restricted, repetitive patterns of behavior, interests, or
activities as manifested by at least two of the
following:
4. Hyper-or hypo-reactivity to sensory input or unusual
interest in sensory aspects of environment (such
as apparent indifference to pain/heat/cold,
adverse response to specific sounds or textures,
excessive smelling or touching of objects,
fascination with lights or spinning objects).
DSM V – PROPOSED LANGUAGE
C. Symptoms must be present in early childhood (but may
not become fully manifest until social demands exceed
limited capacities).
D. Symptoms together limit and impair everyday
functioning.
Two numerical scales of severity are planned to
locate each individual on the continuum.
HOW IS THIS DIFFERENT THAN DSM –IV?
DSM – IV: Pervasive Developmental Disorders (also
known as Autism Spectrum Disorders)
The current DSM lists five diagnoses within the
PDD (ASD) category.
299.00 Autistic Disorder
299.80 Pervasive Developmental Disorder,
Not Otherwise Specified
299.80 Asperger's Disorder
299.80 Rett's Disorder
299.10 Childhood Disintegrative Disorder
WHY THE CHANGE?
The intent:
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To make things cleaner and easier for those who will
be using the criteria. (Dr. Gil Tippy, Clinical Director of
The Rebecca School, Manhattan, New York)
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To ensure that autism “is not used as a fallback
diagnosis for children whose primary trait might be,
for instance, an intellectual disability or aggression.”
(Task force member Catherine Lord)
WHAT CATEGORIES ARE ELIMINATED?
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Asperger’s Syndrome (AS)
Pervasive Developmental Disorder - Not Otherwise
Specified (PDD-NOS)
Non-Verbal Learning Disability (NLD)
CONCERNS ABOUT NEW LANGUAGE
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The current edition of the DSM — DSM IV — gives Asperger’s,
along with several other subgroups of autism, its own labels.
It’s widely agreed that these subgroups have been poorly
defined, thus generating a fair amount of confusion and
subjectivity around diagnosis.
Concerns have been voiced primarily from the Asperger’s
community, who believe that the new language will reduce
the number of “higher functioning” autistic individuals—those
on the “right side” of the spectrum—who are diagnosed and
have access to appropriate treatment.
CONCERNS ABOUT NEW LANGUAGE
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This is, at least in part, due to the later onset of
symptoms that are easily identified and to the current
tendency for this diagnosis to be made considerably
later in life than is the Autistic Disorder or Pervasive
Developmental Disorder, Not Otherwise Specified.
In other words, many adults are now being diagnosed
with Asperger’s Syndrome. In the past, however, very
few adults were diagnosed with autism disorder.
DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER’S
DISORDER – DSM IV
(I) Qualitative impairment in social interaction, as manifested by at
least two of the following:
(A) marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression, body
posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to
developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest
or achievements with other people, (e.g., by a lack of
showing, bringing, or pointing out objects of interest to
other people)
(D) lack of social or emotional reciprocity.
DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER’S
DISORDER – DSM IV
(II) Restricted repetitive & stereotyped patterns of behavior,
interests and activities, as manifested by at least one of the
following:
(A) encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional
routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g., hand or
finger flapping or twisting, or complex whole-body
movements)
(D) persistent preoccupation with parts of objects.
DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER’S
DISORDER – DSM IV
(III) The disturbance causes clinically significant impairments in
social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language
(e.g., single words used by age 2 years, communicative phrases
used by age 3 years)
(V) There is no clinically significant delay in cognitive development
or in the development of age-appropriate self help skills,
adaptive behavior (other than in social interaction) and
curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive
Developmental Disorder or Schizophrenia.
THE GOOD NEWS
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The American Psychiatric Association and clinicians are
already watching to see how or if the new criteria will
affect service availability.
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Their greatest fear is that insurance companies may use
the revision to find ways to deny services to higher
functioning individuals on the autism spectrum and so
they have vowed to ensure this doesn’t happen.
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It remains to be seen.
Transitions to Adulthood
AUTISM SPECTRUM DISORDER
WHAT HAPPENS WHEN CHILDREN WITH AUTISM
BECOME ADULTS WITH AUTISM?
“National, state and local policy makers have been working
hard to meet the needs of the growing numbers of young
children identified as having an ASD,” says Paul Shattuck, PhD,
assistant professor at the Brown School at Washington
University in St. Louis. “However, there has been no effort of a
corresponding magnitude to plan for ensuring continuity of
supports and services as these children age into adulthood.”
WHAT HAPPENS WHEN CHILDREN WITH AUTISM
BECOME ADULTS WITH AUTISM?
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Shattuck’s article in the current edition of the Archives of Pediatric and
Adolescent Medicine describes the findings of a first-of-its-kind study of
service use among young adults with an ASD during their first few years
after leaving high school.
He found that
 39.1 percent of these young adults received no speech therapy, mental
health, medical diagnostics or case management services.
 the odds of not receiving any services were
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more than three times higher for African-American young adults compared with
white young adults and
more than five times higher for those with incomes of $25,000 or less relative to
those with incomes over $75,000.
Overall rates of service use declined significantly from high school to postsecondary status. Specifically
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46.9% compared to 23.5% for medical services;
46.2% compared to 35 % for mental health services;
63.6% compared to 41.9% for case management;
74.6% compared to 9.1% for speech therapy.
WHAT HAPPENS WHEN CHILDREN WITH AUTISM
BECOME ADULTS WITH AUTISM?
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Shattuck notes that the years immediately following the age at
which students typically exit from high school are pivotal for all
young adults but especially for those on the autism spectrum.
Many of the higher functioning young adults on the autism
spectrum—typically those currently bearing the Asperger’s
diagnosis or even some never formally diagnosed—are coming
to college.
Only recently have colleges and universities begun to consider
the ramifications of this growing number of students on the
autism spectrum.
WHAT ARE OTHER COLLEGES DOING?
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The model college program at Marshall University in
Huntington, WV is a support program organized by the West
Virginia Autism Training Center that provides directed
guidance on academics, daily living, and social interaction to
autistic college students (Tracjtenberg, 2008).
Other colleges and universities that have launched autismspecific support programs in the last seven years include:
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Western Kentucky University;
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Fairleigh Dickson University in New Jersey;
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University of Arizona;
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University of Alabama;
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Oakland University in Michigan;
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Keene State College in New Hampshire.
WHAT ARE OTHER COLLEGES DOING?
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Kim Ramsey, the Marshall program's director, indicated that
the students are intellectually capable of meeting the
university’s academic standards but that social and daily living
issues are interfering.
In response to that, the program offers tutoring, counseling, a
quiet space to take exams, and help in the navigation of the
bureaucracy and social world of college, i.e. how to schedule
classes, join clubs, buy books, and replace ATM cards that don't
work.
ACADEMIC ASSISTANCE AND ACCOMMODATION
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First and foremost, students who believe they are on the
spectrum should ask for an evaluation so they may be formally
diagnosed and eligible for services.
Second, the institution’s disability support operations and other
student services should develop familiarity with the diagnosis
and the particular support that is needed to achieve academic
success. This may include, but not be limited to:
 Class selection and scheduling
 Social networking
 Support related to executive function—understand
requirements for and completing paperwork in a timely way,
tracking assignments and appointments.
CLASS SELECTION AND SCHEDULING
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Although students on the spectrum are expected to meet the
school’s academic requirements, some faculty and some class
structures may work better for them than others.
Similarly, some students on the spectrum may work better in a
situation in which they have time for decompression between
classes.
Others may do better in classes that allow for tests to be taken
with the aid of a computer.
Last, some students may need support to complete certain
class activities including, but not limited to:
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Group activities
Choosing a seat that will provide the least distraction
Public speaking.
SOCIAL NETWORKING
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This is a particularly vulnerable area for many students on the
autism spectrum.
Their deficits in this area may result in loneliness and,
eventually, they may drop out of school if their needs aren’t
met.
Schools can provide
 Counseling services.
 Social groups that take advantage of like characteristics or
interests.
 Educational programs aimed at improving initiation and
maintenance of relationships.
EXECUTIVE FUNCTION
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Students on the autism spectrum often have difficulty in
tracking appointments and assignments.
To assist them, schools might offer
 Education in the use of smart phones for scheduling and for
reminders. This work has proven very effective for those
with traumatic brain injury and holds great promise for
those on the autism spectrum.
 Support for developing and maintaining a workable
schedule that accommodates required assignments, for
example daily or weekly check-ins.
FOR MORE INFORMATION ON TRANSITION . . .
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Go to the Family Services Transition Tool Kit at the Autism
Speaks web site.
YOUR TURN….
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What other services might CWU provide to
students on the autism spectrum?