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December 2010
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First Published Monday, 8th September, 2008.

Social Work Today

FWD:  *Social Work Today September/October 2008 Issue*

*Autism Into Adulthood — Making the Transition
By Jennifer Van Pelt, MA
Social Work Today
Vol. 8 No. 5 P. 12*

*Children with autism mature into adults who want to attend college, work,
and have a social life. What services are needed to help them achieve these

Every day we see or hear another story in the news, on television, on the
Internet, or in a popular magazine about issues related to children with
autism. Awareness is growing, and more research is helping parents better
understand their children’s unique behaviors and needs. Healthcare,
education, and social services offer options for parents of young children
with autism that did not exist years ago.

But what happens when children diagnosed on the autistic spectrum grow up?
Increasingly, parents of older teenagers and young adults are seeking
assistance for transitioning to adulthood, and adults who have grown up with
an autism diagnosis or who may be newly diagnosed are facing challenges with
employment, social relationships, and daily living.

According to Pamela Dixon Thomas, PhD, LP, a psychologist with the
University of Michigan Autism and Communication Disorders Center (UMACC),
adults with autism face challenges that children with autism often do not.
“Adults face discrimination that comes from a lack of understanding about
autism. The tolerance that is extended to children with autism is often
lacking,” she notes. Although autism is receiving substantial attention in
the scientific community and from the press, adult autism and related issues
have been neglected.

“Most media attention focuses exclusively on young autistic children while
commonly ignoring autistic adolescents and adults,” says Scott Michael
Robertson, an autistic self-advocate in Pennsylvania and vice president of
the Autistic Self-Advocacy Network (ASAN), an international autistic-run
organization dedicated to expanding societal acceptance, community
understanding, and support resources for individuals across the autistic
spectrum. Robertson is also a doctoral candidate at Penn State University
researching how online communities can empower autistic self-advocates to
collaborate with educational professionals on developing autistic-specific
accommodations and transition resources for autistic college students.
Robertson questions the societal wisdom of providing early childhood
educational services to autistic individuals while neglecting the needs of
those individuals during adolescence and adulthood. “Few specialized state
and local resources exist to help autistic people navigate the challenges
they will encounter in adult life—postsecondary education, employment,
interdependent living, housing, etc.,” he says.

Depending on the severity of symptoms, required resources and services may
range from long-term residential care or supervised day care to vocational
counseling or social skills development. Young adults on the autistic
spectrum may qualify academically for college but not be able to handle
other aspects of college life.

Older adults may experience continued challenges in maintaining successful
personal relationships, physical stamina, and regular employment
expectations. Given the current inadequacies in services, many opportunities
exist for social workers to improve and expand the services available for
adults on the autistic spectrum.

*Society’s Misperceptions — Rising to the Challenge*
Our society views autism as a disease and severe disability, but adults with
autism and professionals working with them seek to change that
misperception. “Society is not autistic friendly,” says Robertson, who
considers gaining societal acceptance of autistic adults’ differences a key
challenge. As a result of his personal experiences, Robertson is helping
other autistic individuals recognize their individual strengths and
challenges to build a healthy self-esteem and sense of self-worth.

As an active autistic community advocate, Robertson mentors autistic
adolescents and cofounded a social support group for autistic teens in State
College, PA. Through his leadership positions in organizations such as ASAN,
the Autism Higher Education Foundation, and the Asperger Syndrome Alliance
for Greater Philadelphia (ASCEND), he is helping debunk myths about autism.

Robertson cites the case of Nate Tseglin, an autistic teenager, as an
example of how misperceptions about Asperger’s syndrome and autistic
challenges can lead to mistreatment and abuse. At age 14, Nate was
multilingual, graduated with honors from middle school, and received an
award for excellent behavior and citizenship. When Nate was 17, a high
school teacher called child protective services after seeing self-inflicted
scratches on Nate, who had asked the teacher to help him with soft
restraints prescribed by a doctor to help manage his anxiety. Nate was
forcibly removed from his home, placed in an institutional setting, and
heavily medicated against his and his parents’ wishes, and his parents were
denied visitation and access. ASAN provided legal support and advocacy for
Nate’s family and was instrumental in having Nate released and returned to
his family (visit www.getnatehome.com for more information). “Unfortunately,
Nate’s experience is becoming the norm rather than the exception in a world
that does not adequately accept, understand, or support autistic adults,”
Robertson says.

In addition to fighting misperceptions, adults on the autistic spectrum must
also face challenges of employment, postsecondary education, housing, social
relationships, and healthcare. Robertson and Dena L. Gassner, MSW, director
of the Center for Understanding and an advisory board member to the Autism
Society of America, have personally experienced some of these challenges and
continue to help other adults with autism through their work.

Gassner explains that an adult with Asperger’s may be a superior employee in
task completion and job knowledge but cannot understand the social behaviors
expected by others in the workplace. In other cases, the physical
environment of the workplace may present daily challenges. “Sensory overload
causes problems for many adults with autism. The fluorescent lighting and
noise from other workers may make it impossible for them to work a full day
in such an environment. Long-term employment, therefore, is often difficult
for adults with Asperger’s and other diagnoses on the autistic spectrum,”
says Gassner.

Robertson adds that while exact statistics on employment for autistic adults
are not known, underemployment (the underutilization of skill set,
knowledge, and job experience), as well as unemployment, are huge barriers
limiting autistic adults. “Many autistic adults have college degrees and, in
some cases, graduate degrees, but they are not working in the field of their
degree,” he says.

Difficulties with social cognition (the ability to understand social cues)
often can prevent adults with autism from participating in community
activities and functioning in a job suited to their skills and knowledge.
Better interventions are required to help them develop skills to understand
social interactions, but resources are currently inadequate, especially in

*Organizational Support*
Lack of understanding on the part of employers and a lack of effective and
accessible vocational rehabilitation/counseling services are barriers to
regular employment for many adults with autism. Some academic centers that
have autism programs are starting services that help adults develop social
skills important for employment success. Thomas says, “UMACC has social
groups for adults that focus on learning and practicing social interaction
skills, independent living skills, and provide a forum for discussing what
it’s like to live with autism.”

An innovative community program is helping young adults with autism improve
social cognition with the hope of improving opportunities for employment and
community involvement. Jonathan J. Kaufman, PhD, is codirector of the
Adaptations program at the Manhattan Jewish Community Center (JCC) and
founder of Disability Works, Inc., a consulting company that helps
corporations, government organizations, and educational institutions develop
strategies and initiatives to improve the quality of life for people with
disabilities. Kaufman helped launch Adaptations, the first initiative of its
kind in the United States serving young adults in their 20s and 30s who have
learning disabilities and/or are on the autistic spectrum. The program
develops social skills and job strategies and provides social events,
including social skills groups, cultural events around New York City,
lounges, dinners, and use of the JCC facilities for activities from
photography, cooking, and fitness to integrated programming with other young

“One of our cornerstone programs is our social skills curriculum where we
teach tools for dealing with certain social situations, ranging from
friendships to workplace etiquette to basic communication skills,” says
Kaufman. Another component of Adaptations is career exploration and
development. For program participants who are ready for a competitive
employment environment, one-on-one career and skills assessments are
provided, along with group discussions.

Kaufman has seen Adaptations work wonders for some participants. “One of
our greatest successes is to see that meaningful friendships have been
fostered beyond the parameters of the program. A perfect example is one of
our members who had very few friends, and most of her social life revolved
around her parents. Since joining the Adaptations program, she has truly
blossomed, made friends, and has nurtured those relationships so that her
social calendar is constantly busy. She has become such a proponent of the
program that she now acts as the ‘official ambassador’ of the program by
reaching out to new members,” he explains.

*Meeting the Challenges of College*
“Autistic adults may be finding the college experience daunting because of
widespread lack of specialized services and accommodations for them on
campuses,” says Robertson. Few programs in the United States provide
support—living arrangements, social skills, and study skills development—for
college students with autism, says Marci Wheeler, MSW, of the Indiana
Resource Center for Autism at the Indiana Institute on Disability and
Community. Wheeler has 25 years of experience working with teenagers and
adults with autism and has established long-term relationships, working with
one family since their now 28-year-old child was 7. Wheeler sees
deficiencies in services available for young adults with autism; however,
she believes resources are growing as this population continues to increase.

“Lack of employment opportunities is the biggest tragedy. Regardless of IQ,
autistic adults can be very good workers. Our society is not tapping into
their special abilities, like math, music, and computer skills,” Wheeler
says. Better vocational services, she says, will give adults on the autism
spectrum strategies to help adjust to the workplace. She believes better
understanding about autism and Asperger’s syndrome will help employers take
advantage of the special skills and talents that these individuals can bring
to a job.

One of those resources is the Achieving in Higher Education With
Autism/Developmental Disabilities (AHEADD) program at Carnegie Mellon
University in Pittsburgh. AHEADD is a private, community organization that
supports students in higher education with learning disabilities, diagnoses
on the autistic spectrum, nonverbal learning disorders, and
attention-deficit disorder. Originally developed in cooperation with Equal
Opportunity Services of Carnegie Mellon University, AHEADD is specifically
designed to address students’ inherent social, communication, and
organizational issues and helps students develop individualized strategies
to manage their college careers independently.

“Unlike many other programs for students with autism spectrum disorders in
higher education, the AHEADD model can be applied within any campus
environment and tailored to meet the unique needs of each student,” says
Carolyn Komich Hare, MS, founder and director of AHEADD. Recently, AHEADD
opened new offices in Dallas; Albany, NY; and Washington, DC. Students
involved with AHEADD have professional staff support, peer mentors, access
to a campus and community support network, and assistance in utilizing
campus resources.

“Aside from the inherent social challenges, I believe the most critical
challenge for young adults with autism is finding and keeping jobs that are
commensurate with each individual’s true potential and area of interest.
This is true even for those autistic adults who successfully complete a
college degree,” Hare says.

One of Hare’s early success stories was Valerie Kaplan, profiled in a 2006 *New
York Times* article on services for college students with autism. Kaplan,
who scored a perfect 1600 on her SAT exam, floundered in her sophomore year
at Carnegie Mellon, having difficulty navigating the complexities of college
life and interacting with students and professors. Hare acted as Kaplan’s
coach for the next two years by helping her organize her academic
assignments, buy groceries, and improve her housekeeping skills. Kaplan
graduated in 2005 and went on to manage an electronic games store. Hare went
on to create the AHEADD program.

*Bridging Gaps in Care — An Expanding Role for Social Workers*
According to Paul T. Shattuck, MSSW, PhD, an assistant professor in the
George Warren Brown School of Social Work at Washington University in St.
Louis, research on the care and support of adults with autism is severely
deficient. “The bulk of research has focused on basic behaviors and
genetics, not policies for care. There is a real gap in what we know about
support across the lives of these individuals and how to best create systems
of care for the long haul,” Shattuck notes.

“Since 1994, fewer than 150 peer-reviewed journal articles in the autism
research community have examined such issues as employment, college and
postsecondary educational transition and support, housing, peer
victimization, romantic relationships, and anxiety/depression,” Robertson

In stark contrast, research studies on children with autism number in the
thousands. More funding for adult studies is necessary since funding for
scientific research from autism-related nonprofit associations and
government organizations focuses on physiology, genetics, and early
educational support for children with autism, while generally ignoring
issues and challenges faced by teens and adults with autism, such as
educational support and employment.

Shattuck, one of the few researchers examining issues related to aging on
the autistic spectrum, recently published a study documenting changes in
symptoms and behaviors in adolescents and adults with autism. One of the
study findings is that the core challenge of social cognition is a common
thread across the autistic spectrum.

Gassner believes the field of services for adults with autism is exploding,
and there is a huge demand for properly trained social workers. Social
workers will need to become more knowledgeable in the diagnostic spectrum
for pervasive developmental disorders and co-occurring conditions. “When you
see an adult who has been treated for ADHD [attention-deficit/hyperactivity
disorder], depression, learning disabilities, and anxiety with no success,
one must consider that they may have a developmental disorder and send them
for an appropriate assessment,” she says.

In addition to a better understanding of diagnostic criteria, social workers
must also realize that every client with autism will exhibit different
skills, behaviors, and challenges. Gassner notes, “A commonly heard phrase
in the autism community is, ‘If you have met one person with autism, you
have met one person with autism.'” For social workers in this field,
comprehending the issue of heterogeneity is an absolute must.

“Just because you know the diagnostic label on the autistic spectrum doesn’t
mean you know much of anything about that individual walking through your
door,” Shattuck emphasizes. Because each individual will be different in
terms of his or her level of communication skills, social cognition, and
other behaviors, individualized assessments and interventions are critical.

Professionals working with adults with autism can help by first discovering
the strengths and weaknesses of the individual and then developing a
treatment plan that focuses on areas in need of attention. “Since autism is
such a heterogeneous disorder, individualized treatment is paramount. For
example, one person may have a successful career but find it difficult to
engage in social conversation. Another person’s difficulty might be poor
organization and planning skills that impact job performance,” explains

In addition to individualized assessment, other skills that will help social
workers in this field are case management experience and adeptness as a
liaison with healthcare professionals. A key role for social workers,
according to Shattuck, is in helping individuals with autism and their
families navigate different care systems. Adults with an autism diagnosis
will be involved in many different systems of care, including vocational
rehab, medical treatment, and mental health.

“Social workers can be effective case managers in helping adults with autism
and their caregivers manage the boundaries and interactions between these
systems of care. There is an important role and a real need for social
workers that can bridge these different systems to help improve the overall
quality of care of individuals on the autistic spectrum.”

Wheeler receives many calls from parents whose children are 18, realizing
that school is ending, and who have no plans for life after school. “They
realize they may be facing a situation when their son or daughter finishes
school that they will now be at home with nothing to do because no further
plans beyond school have been made. Or, unfortunately, there may have been
plans made, but access may be limited to programs for young adults who need
more intense supervision and training components,” she says.

Transition planning resources may be available from state disabilities or
autism service organizations or from the school’s individualized education
plan for the student with autism. Schools may have a transition coordinator
who can assist with finding support services after graduation. For families
with young adults who cannot live independently, residential programs and
guardianship may become an issue when the child reaches 18.

The need for counseling and assistance services for adults newly diagnosed
on the autistic spectrum is also rapidly growing. “The Internet has really
created more awareness of the symptoms of autism, which is in turn resulting
in more adults realizing that they may have Asperger’s syndrome or another
pervasive developmental disorder,” Wheeler says. She has worked with adults
who, after reading information on the Internet, recognized that they or
their spouse has an autistic condition. Wheeler has coauthored a book titled
ASD and Non-Spectrum Marriages: Non-Spectrum Partners Speak Up About the
Challenges and Successes with the hope that it will be a resource for adults
with relationship issues associated with a new autism diagnosis.

For social workers with experience in autism services, and for those
interested in joining this burgeoning field, there are many important
opportunities in addition to the traditional roles in counseling and case
management, says Robertson. “Social workers can organize self-advocacy
training sessions for autistic adults in conjunction with autistic-run
organizations. They can lead community-organizing activities designed to
educate local communities about autistic adults and to expand and strengthen
community support resources and they can work to establish mentorship
pairing for autistic teens and adults,” he says.

*— Jennifer Van Pelt (formerly Sisk), MA, is a Reading, PA-based freelance
writer with 15 years of experience as a writer and research analyst in the
healthcare field. She has written on depression,
attention-deficit/hyperactivity disorder, schizophrenia, mental wellness,
and aging.*

* *

*The Language of Autism*
When someone says, “My son has autism,” many of us expect to see a child who
rocks back and forth, does not speak, and is mentally handicapped. However,
we may, in fact, see a child, teen, or adult whose outward appearance and
actions are what we consider “normal,” who can play any music by ear but
cannot solve a simple math problem. The term autism has been used to lump
together a group of three pervasive developmental disorders: autistic
disorder, Asperger’s syndrome, and pervasive developmental disorder/not
otherwise specified (PDD/NOS). Although there are hallmark criteria to be
diagnosed with a PDD—deficits in communication/language skills, social
cognition issues, and repetitive behavior or unusual preoccupation—there is
a large range in the variability of how these criteria are expressed in the
individual. And there is disagreement in the academic and professional
communities regarding how to apply criteria for diagnosis.

Traditionally, the most severe variant, autistic disorder, has been
characterized by profound mental retardation and a lack of verbal language
skills. Asperger’s syndrome is characterized by normal language development,
normal to above average IQ, some type of issue with social skills and social
cognition, and a stereotypical pattern of behavior or preoccupation. PDD/NOS
has some symptoms of autistic disorder and/or Asperger’s syndrome, but
strict criteria for those conditions are not met. However, recent research
is disputing the co-occurrence of mental retardation and autism.

The descriptive phrases “high functioning” and “low functioning” are also
commonly heard. However, these descriptors have been adulterated, says Dena
L. Gassner, MSW, director of the Center for Understanding and an advisory
board member to the Autism Society of America. “The phrase ‘high
functioning’ was initially intended to separate those with IQ scores
indicating mental retardation. Now, ‘low functioning’ is generally used to
refer to those with autistic disorder who require substantial assistance in
all domains and ‘high functioning’ to refer to those with Asperger’s and
PDD/NOS who may appear to have limited issues with social interactions and
behaviors, but in reality, they too suffer with the organization and
planning of self-care and basic skills.” She questions whether someone who
cannot communicate but graduates college with honors is truly low
functioning, and similarly, whether someone classified as high functioning
but cannot remain employed or sustain relationships is really high
functioning in our society.

The phrase autistic spectrum is now being used more frequently to reflect
these individual variations, so an individual may be described as being
diagnosed on the autistic spectrum. “The phrase ‘autistic spectrum’ is not
an official clinical term, but rather a colloquial term that has been
adopted to refer to the recognition of symptoms that occur on a continuum of
severity,” explains Paul T. Shattuck, MSSW, PhD, an assistant professor at
the George Warren Brown School of Social Work at Washington University in
St. Louis. “The heterogeneity on the autistic spectrum is enormous, which
makes it so challenging from the standpoint of developing best practices for
care. There is no good way of thinking or talking about these levels of
severity in a systematic way. The severity of symptoms will determine the
challenges faced in adulthood,” he says.

The Autistic Self-Advocacy Network is working to change the language used to
describe autistic individuals, preferring that the phrase “adults with
autism” be replaced by autistic adults or adults on the autistic spectrum.
“We also look to discourage usage of phrases that do not realistically
express that autism brings a combination of neurologically diverse strengths
and challenges—descriptors like suffering, impaired, afflicted, disordered,
and defective,” says Robertson.

For more information, visit http://web.syr.edu/~jisincla/person_first.htm.

*— JVP*

*Editor’s Note:** Social Work Today currently uses “person-first” language
(e.g., adults with autism) commonly accepted in the social work profession.
However, Mr. Robertson’s quotes and text related to his statements reflect
his preference in autism-related language.*

Ari Ne’eman
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005

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