CHAPTER 17 Adolescents with Developmental
Disabilities and Their Families
PENNY HAUSER-CRAM, MARTY WYNGAARDEN KRAUSS, AND JOANNE KERSH
For example, current research emanat­
ing from the fields of molecular biology and
behavioral genetics has stimulated thinking
about the complex interplay between genetic
disorders (such as Down syndrome or fragile X
syndrome) and developmental changes in indi­
viduals with those disorders (Inlow & Restifo,
2004). Such work is essential to mapping the
variation within typieal development. locating
biological differences in atypical development
(e.g., in the synthesis of proteins), and forming
testable hypotheses about gene~nvironment
interaction and potential therapeutic interven­
tions (Gardiner, 2006). Currently, the grow­
ing knowledge base on the cont1uence of
gene~nvironment complexity along with the
biological changes and psychosocial demands
that typically occur during the adolescent
period makes the study of this developmen­
tal phase for individuals with developmental
disabilities essential to a full understanding of
adolescent development. For example, stud­
ies on those with fragile X syndrome, the most
common form of hereditary intellectual dis­
ability, indicate that the disorder is due to a
mutation of the FMRI gene on the X chromo­
some, a condition that has been simulated in
mice. Restivo et al. (2005) conducted a study
on such mice (termed knockout mice since the
FMRI gene is deleted) comparing those reared
in enriched and standard caged environment
They reported that the transgenic mice raised
in the enriched environment showed fewer
behavioral abnormalities (such as hyperac­
tivity and lack of habituation) and displayed
The preparation of this manuscript was par­
tially supported by grants R40 MC 00333 and
R40 MC 08956 from the Maternal and Child
Health Bureau (Title V, Social Security Act),
Health Resources and Services Administration,
Department of Health and Human Services.
INTRODUCTION
A comprehensive understanding of adolescent
development requires investigation into both
normative patterns and individual differences
in the full range of developmental domains.
Extensive research in adolescent development
has focused on delineating trajectories of typi·
cal development and understanding how those
vary based on gender, culture, and socioeco­
nomic context. Very few studies, however,
consider such trajectories in adolescents with
developmental disabilities (i.e., biologically
based delays or impairments in one or more
areas of development). Investigations of indi­
viduals with developmental disabilities usu­
ally require cross-disciplinary collaboration
among such fields as psychology, sociology,
biology, medicine, public health, special edu­
cation, social work; and psychopathology, and
therefore the study of adolescents with devel­
opmental disabilities has not found a primary
home. (ndeed, some researchers point out that
adolescence is not even considered an actual
subdiscipline within the field of intelleetual
impairment (Hodapp, Kazemi, Rosner, &
Dykens, 2006). Cross-disciplinary work, how­
ever, can provide critical insight into such
investigations.
589
1
590
Adolescents with Developmental Disabilities and Their Families
.. postmortem morphological advantages in den­
dritic length and branching in the visual cortex.
Such studies on transgenic mice combined
with growing knowledge on changes in tire
adolescent brain of humans, especially synap­
tic pruning and reorganization (B lakemore &
Choudhury, 2006), suggest that investiga­
tions on adolescent development in those
with developmental disabilities may lead to a
greater understanding of gene~nvironment­
development interactions during the adoles­
cent phase of life.
In this chapter, we center on the current theo­
retical and empirical knowledge base about the
adolescent period for individuals with develop­
mental disabilities and their families. Although
adolescents with developmental disabilities
by definition display atypical trajectories with
regard to some aspects of development, most
still encounter life challenges and embark on
Iife tasks typical of this developmental phase. In
addition, like most parents of adolescents, their
parents face issues about the adolescent's cur­
rent and future well-being. The need to under­
stand the way in which typical developmental
issues emerge for these adolescents and those
supporting them is increasingly highlighted both
in discussions about daily practice as well as in
policy discourse. Despite the accelerating public
attention on developmental disabilities and cur­
rent federal mandates, including the Individuals
with Disabilities Education Act (£DEA) and the
Americans with Disabilities Act (ADA), empir­
ical information, while rich at the early child­
hood phase, is only slowly gaining momentum
about the development, strengths, and needs of
adolescents with disabilities and their families.
This chapte~ has five main sections. The
first offers a description of developmental
disabilities and current U.S. federal policies
and statistical information relevant to ado­
lescents with developmental disabilities. In
the next section, we discuss special concerns
related to adolescents with developmental
disabilities, with attention to their health and
well-being. We then provide a discussion of the
applicability of current developmental theories
and related empirical work to adolescents
with developmental disabilities. Relationships
within families often change in adolescence,
and in the fourth section we review theory and
research on the role and functioning of fami­
lies, including siblings, of adolescents with
developmental disabilities. [n a concluding
section, we discuss the implications of current
work and offer directions for future research.
DEVELOPMENTAL OlSABlLlTlES:
DEFINlTlONS AND FEDERAL
POLlCY
In this section, we present a definition of
developmental disabilities along with data on
the increasing incidence of such disabilities.
As legislation affects the lives of adolescents
with disabilities in critical spheres includillg
education, employment, and health, we also
review the major tederal policies that are specitic
to those with disabilities in the United States.
Definition and lncidence of
Developmental Disabilities
The term dct'eloplIletttal disabilities is codified
in Public Law (PL) 106-402. the Developmental
Disabilities ASSistance and Bill of Rights Act
Amendments of 2000. [t is defined as acondition
attributable to a mental or physical impairment
(or combination) that manifests before age 22
and is likely to cOlltinlJe indefinitely. It results
in sub~tantial functional limitation in three or
more areas of major life aeti dty, including
self-care, rec<~pti\'e and expressive language.
learning, mobility, self-direction, capacity
for independent living, and economic self­
sufficiency. and reflects an individual's need for
ongoing care and/or services. Among the most
comlllon conditions included under the umbrella
of developmental disabilities are autism. cere­
bral palsy, epilepsy, intellectual disability
(formerly termed mental retardation), and
other neurological impairments. CUITent esti·
mate.;; indicate that. in 2005, about 17% of US
youth receiving special education serviceS did
so because of a developmental disability (US
Department of Education, 2007c).
1i;
Developmental Disabilities: Definitions and Federal Policy 591
l
The rat:s of documented disability during
~'childhood and adolescence have increased
steadily over the pa<;t decade (U.S. Department
of Education, 2007 c ). This trend appears to be
particularly strong for adolescents. For youth
aged L2-17 years, the U.S. Department of
/;!:>U""'''uvu reported a disability prevalence rate
()f9.77 per LO,OOQ in 1995; by 2005, this rate had
increased to L1.69. This increase appears to be
due, in some part, to an increase in the number
of youth who are diagnosed with autism spec­
trum disorders (ASDs). While t/le prevalence
of children and adolescents with an intellectual
disability has decreased slightly, the identifica­
tion of autism and its related disorders has seen
a marked increase. In L995, only 6,648 adoles­
cents nationwide received special education
services because of a primary diagnosis of
autism; however, this number had increased to
71,889 in 2005 (U. S. Department of Education,
2oo7c). There has been some debate around
whether this increase in prevalence actually
reflects an increase in the incidence of autism
in the popuLation, an increase in the rate of
identification, or an effect of changing diag­
nostic criteria. Based on a review of 37 studies,
Fombonne (2005) concluded that existing epi­
demiological data were insufficient to support
the hypothesis of a secular increase in the rate
of autism. Rather, the available evidence sug­
gests that increases in the prevalence of autism
are largely attributabLe to changes in diagnostic
criteria and broadened defmitions (Fombonne,
2005). Shattuck and Grosse (2007) suggested
that because special education data are based
solely on primary classifications, the grow­
ing enrollment prevalence of autism might
aLso reflect the inc~easing proportion of youth
with dual diagnoses who are being classified
as having an ASD, rather than by a coexisting
disability.
Federal Legislation Related to
Developmental Disabilities
The rights of youth with developmental
disabilities are protected by a range of feder­
ally legislated mandates and policies. In this
section, we discuss three areas of legislation
that are particularly salient for adolescents
with developmental disabilities. First, we
'will briefly discuss the federal legislation that
protects the civil rights of individuals with
disabilities in the United States. Next, we will
talk about educational legisLation and policies
that are relevant to youth with developmental
disabilities. Finally, we will discuss programs
enacted under the Social Security Act that have
been put in place to assist individuals wi\h dis­
abilities and their families.
Civil Rights Legislation
In 1973, the Rehabilitation Act (PL 93-112) was
passed, making it the first federally enacted leg­
islation that addressed the rights of people with
disabilities. Section 504 specifically stated that
no federally funded program or institution
may exclude individuals from access or partic­
ipation based solely on their disability status.
In 1990, the Americans with Disabilities Act
(PLlOI-336) extended these protections, pro­
viding comprehensive civil rights protection
for people with disabilities. [t mandated that
local and state, as well as federal, programs
must be accessible; that businesses make rea­
sonable accommodations for workers with dis­
abilities; and that various aspects of public life,
such as transportation and communication, be
accessible. Thus, by ensuring these protections
and rights, the ADA has guaranteed a variety
of opportunities for youth with developmental
disabilities, such as competitive employment,
independent living, and a high level of com­
munity involvement, that were not available
two decades ago.
Educational Policy and Legislation
In 1975, the Education of All Handicapped
Children Act (PL 94-142) mandated a free,
appropriate public education for all children
with disabilities. Aside from guaranteeing the
education of all students, this act established
regulations governing the terms of "Special
Education." For example, it mandated that all
students receiving special education services
have an individualized education program
592 Adolescents with Developmental Disabilities and Their Families
.
(IEP) that specifies current level of performance,
annual goals, and services to be provided. More
recent amendments also mandate that an IEP
specify the extent to which the student will be
included in the general education curriculum.
In 1990, this act was amended and renamed
the Individuals with Disabilities Education Act
(IDEA; PL to 1-476). Since then, the IDEA
has been amended and reauthorized twice, in
1997 (PL 105-17) and, most recently, in 2004
(PL 108-446).
Since 1990, the IDEA has.included specific
language that addressed the preparation of
students for the transition from school to adult­
hood. Specifically, it mandates that schools
must provide adolescents with disabilities
with instructional and experiential opportu­
nities that foster the skills necessary to func­
tion successfully after high school. Transition
services, as detailed in IDEA 2004, encompass
a broad set of coordinated activities and ser­
vices, including both academic instruction and
community experiences, which are tailored to
prepare students to meet their goals for adult
life. For youth with developmental disabili­
ties, primary transition goals most frequently
include maximizing functional independence,
enhancing social relationships, living inde­
pendently, and working competitively in the
community (National Longitudinal Transition
Study 2. 2007a). A transition plan is developed
in consideration of each child's individual
strengths, interests, and preferences and must
be included in the rEP by age 16.
Although schools in the United States have
made significant progress in their ability to
implement transition plans for their students
with disabilities (National Center on Secondary
Education and Transition, 2(04), their success
in helping students with more severe impair­
ments has been marginal. Recent findings from
the National Longitudinal Transition Study 2
(2007b) report that, for youth with intellec­
tual disabilities, less than 25% are described
as making "a lot of progress" toward transi­
tion goals, as compared to 50% of youth with
learning disabilities.
No Child Left Behind Other federal
education legislation that has had particular
relevance for youth with developmental disabil­
ities is the No Child Left Behind Act of 2001
(NCLB; PL 107-110). The NCLB established
a state accountability system that is monitored
through standards-based testing for all students,
including those who receive special education
services. This act also gave the states flexibil­
ity to use alternate and/or modified methods of
assessment (based on alternate and/or modified
standards of achievement) to assess the prog­
ress of students with disabilities, thus aligning
the NCLB with existing IDEA regulations that
require all students to have access to the gen­
eral education curriculum ang to be included in
general assessments. The inclusion of students
with developmental disabilities under NCLB
has placed additional emphasis on special
education in the United States, providing both
increased opportunities and increased chal­
lenges for students and teachers (Wakeman,
Browder, Meier, & McColl, 2(07).
Social Security
Additional federal programs that significantly
impact the lives of youth with developmental
disabilities are those of the Social Security
Administration. specifically, Supplemental
Security [n",ome (SS£) and Medicaid. SSI is
an income assistance program for people with
disabilities whose income and assets are suf­
ficiently low to meet eligibility requirements.
,\. significantly larger proportion of individuals
with developmental disabilities than in the
general population experience economic hard­
ship, including children and youth with devel­
opmental disabilities and their families (e.g.,
Parish. 2(03). [n 2005, over 2 million children
and youth received SSI payments. and about
half of these were adolescents (U.S. Social
Security Administration, 20{)7). In most states,
those who appl y for and are eligible for SS[ are
automatically enrolled in Medicaid. the federal
program providing medical benefits to people
with disabilities; however, in some states, indi­
viduals must apply separately.
Health and Well-Being of Adolescents with Developmental Disabilities 593
Although both SSI and Medicaid are designed
to reduce poverty and offset disability-related
expenditures, neither program provides suffi­
cient support (Parish, 2003). In 2006, the maxi­
mum federal SSI payment feU several thousand
dollars short of the national poverty thresh­
old (U,S. Department of Health and Human
Services, 2006), Furthennore, the linking of
SSI and Medicaid programs has created addi­
tional challenges and barriers for many parents
of youth with disabilities. Because eligibility
is linked to asset and income criteria, parents
who are employed but have low-paying jobs
risk losing comprehensive Medicaid benefits
for their children, regardless of whether their
employers offer health care benefits (Parish,
2003; Turnbull et al., 2007). Moreover, chil­
dren and youth with developmental disabilities
often have complex health problems (Lotstein,
McPherson, Stickland, & Newacheck, 2005),
and some of these health concerns may increase
or worsen during the adolescent years due to
hormonal changes, making this a particularly
challenging and stressful time for parents. To
address this problem,' the Deficit Reduction
Act of 2005 (PL 109-171) included the Family
Opportunity Act, which authorized states to
anow families of children with disabilities who ,
do not meet SSI. income eligibility requirements
to buy-in to Medicaid. The act allows states to
offer this opportunity to families with incomes
up to 300% of poverty, and it is projected that by
2010, all children under the age of 18 that meet
eligibility requirements will be covered.
Although clearly there are policies in place
to aid and support adolescents with disabilities
and their families, accessing and coordinat­
ing these services can be a significant respon­
sibility and a source of stress (Schneider,
Wedgewood, Llewellyn, & McConnell, 2006).
It is striking that presently there is little to no
interagency collaboration, and therefore the
Integration of these rights and resources is left
to the adolescent and his or her parents, many
of Whom may already have limited resources.
Arecent study found that this was one of the
greatest challenges faced by families; parents
spoke of the complexity of navigating multiple
service delivery systems that was exacerbated
by a dearth of available information and the
lack of coordination between agencies and
schools (Timmons, Whitney-Thomas, Mdntyre,
Butterworth, & Allen, 2004). [ndicating that
this is not a situation unique to families in the
United States, an Australian study concluded
that, "the frustrations, difficulties, and delays
typically encountered in accessing many
services appeared to add to, rather than alle­
viate. the pressure and workload of families"
(Schneider et aI., p. 932).
HEALTH AND WELL·BEING
OF ADOLESCENTS WITH
DEVELOPMENTAL DISABILITIES
Although health and well-being are impor­
tant areas of concern for anyone focusing on
adolescent development, they have increased
salience when considering those with devel­
opmental disabilities. Particular health con­
cerns emerge for adolescents with specific
disabilities. For example, among adolescents
with autism, the risk for the onset of seizure
disorders during adolescence is at least 20
times that of the general population (Spector &
Volkmar, 2006). Due to scientific advances in
medicine, many children with developmental
disabilities now have much longer survival
rates, and some of their adolescent health care
needs are only beginning to be understood
(Bittles, 2002). Notably. children with Down
syndrome now have a life expectancy well into
the adult years. primarily due to major changes
in surgical treatment of cardiac anomalies dur­
ing early life and better health care services
overall (Glasson, Sullivan, Hussain. Petterson,
Montgomery, & Bittles. 2002).
Sleep disruption is an area of increasing
attention for those with intellectual disabil­
ity (Sajith & Clarke. 2007), and obesity and
obesity-related secondary conditions tend to
be a concern for many adolescents with devel­
opmental disabilities (Rimmer. Rowland, &
Yamaki, 2007). There is also evidence that
the symptoms of particular developmental
1
594 Adolescents with Developmental Disabilities and Their Families
disabilities change during the adolescent
period. Shattuck et aL (2007) report that there
is a gradual pattern of improvement in the core
symptoms of autism during adolescence and
adulthood, although residual levels of impair­
ment remain clinically significant. The American
Academy of Pediatrics (American Academy
of Pediatrics, American Academy of Family
Physicians, & American College of Physicians­
American Society of Internal Medicine, 2(02)
has called for pediatricians and other health care
providers to become better educated about the
population of children with special health care
needs as increasing numbers are moving into
the adolescent and emerging adult periods.
Transition to Adult Health Care
Services
The entry into the late-adolescent period brings
with it a transition in health care services from
the pediatric, family-focused system to the
adult, specific-care system. The American
Academy of Pediatrics and other medical pro­
fessional organizations recommend that all
adolescents with special health care needs have
a written health care transition plan by the age
of 14 years (American Academy of Pediatrics
et aI., 2(02), yet empirical studies indicate that
this rarely occurs (e.g., Scal & Ireland, 2005).
Although all adolescents or young adults
need to move from the pediatric to the adult
health care system, those with special health
care needs or with developmental disabilities
and their parents experience more disruption
with this transition at least partially because
the pediatric and adult systems of care repre­
sent different subcultures (Reiss, Gibson &
Walker, 2(05). Some find the more frag­
mented services available for adults to lack a
necessary focus on the well-being of the ado­
lescent as a developing person. Others find it
difflcult to leave a pediatrician who has known
the child and family since birth. Mitchell and
Hauser-Cram (2008) reported that satisfaction
with the health care of their adolescent with
developmental disabilities predicted maternal
psychological well-being. Consistent with
family systems theory (Minuchin, 2002), the
adolescent is not the only one affected by
the relationship with the health care system
providing services to him or her.
One indicator of an adolescent's readiness
to make the transition to adult services is his or
her knowledge of sexual health (Ledlie, 2(07).
Sexuality, however, is an area of well-being
that has been neglected in the study of ado­
lescents with developmental disabilities. This
neglect may be due to societal discomforts and
misperceptions (Gordon, Tschopp, & Feldman,
2(04); but like all adolescents, those with
developmental disabilities are sexual beings
(Committee on Children with Disabilities,
1996). Some disabilities, such as cystic fibro­
sis, are associated with slower-than-typical
pubertal development whereas others, such as
spina bifida, are associated with precocious
puberty (Holmbeck, 2(02). Although par­
ents, health providers, and, m0st importantly,
the adolescents themsel ves need information
on changes to expect during pubeny, little
syndrome-specific information is available
and even less is known about the behavioral
correlates of those pubertal changes.
A few studies, however, indicate that par­
ents are concerned about sexual abuse of their
adolescent with developmental disabilities
(Wilgosh, 1993). Prevalence rates of being
abused are higher alllong those with develop­
mental disabilities. although rates vary widely
(Hodapp et al., 2006) In particular, girls with
Williams syndrome may be at. increased risk
for sexual abuse given their tendency toward
social disinhibition. and at least one study
indicates that abuse rates may be higher for
this group (Davies. Udwin, & Howlin, 1998).
Mental Health and Behavior Problems
The study of children and adolescents with
developmental disabilities is sometimes placed
within the field of developmental psychopathol­
ogy. Generally, those who ha\"e developmental
disabilities can be classified by the system
detailed by the DiaRnostic and Statistical
Manual of IUental Disorders, 4th edition
Health and Well-Being of Adolescents with Developmental Disabilities
595
•
(DSM-IV) (American Psychiatric Association,
2000), and intellectual disability (formerly
termed mental retardation) is included in the
DSM-IV categorization of psychiatric diag­
noses. Adolescents with intellectual and other
developmental disabilities do not necessarily,
however, have mental health issues. Therefore,
the presumption of psychopathology as an
inevitable correlate of having a developmental
disability is unwarranted.
,
Nevertheless, the likelihood of behavior
problems is known to be increased in this group.
Some individuals have specific genotypic
disabilities that are associated with specific
behavior problems. For example, Prader-Willi
syndrome is associated with extreme hyper­
phagia (i.e., overeating). In contrast, those
with Down syndrome have fewer difficulties
with mental health in comparison to individu­
als with other forms of intellectual disability
(Mantry et aI., 2007). Longitudinal studies
of behavior problems in children and adoles­
cents with developmental disabilities indicate
a prevalence rate around 40% (Einfeld &
Tonge, 1996; Stromme & Diseth, 2000). That
rate is notably higher than reported for the
typical population of adolescents (Roberts.
Attkisson, & Rosenblatt, 1998). In review­
ing prior longitudinal studies of children with
developmental disabilities, Chadwick, Kusel,
Cuddy. and Taylor (2005) note that although
stability of behavior problems remains
fairly strong across developmental periods,
a decrease in such problems tends to occur
during the adoJesce'.lt years. Lounds, Seltzer,
Greenberg, and Shattuck (2007) reported that
nearly half of their sample of 140 adolescents
and adults with autism decreased in the num­
ber of behavior problems manifested over a
3-year period. In results from their longitudi­
nal study of those with severe intellectual dis­
abilities, Chadwick et aL (2004) found that the
rates of some behavior problems decreased,
especially in areas of overactivity. Two lon­
gitudinal birth-cohort samples were used in
the Dutch Mental Health Study, allowing
comparisons to be made between those with
and without intellectual disabilities. In one
such comparison, de Ruiter, Dekker, Verhulst,
and Koot (2007) concluded that children with
intellectual disabilities had higher rates of
problem behaviors across all ages but showed
greater decrea~es in these behaviors during the
adolescent period in comparison to other ado­
lescents. Problems with aggression and attention
showed notable decrea~es in the adolescents with
intellectual disabilities, but problems in social­
relating areas increased. Given the importance
of peer relationships during the adolescent
period, such findings underscore the impor­
tance of considering distinct types of behavior
problems rather than an aggregation of problem
behaviors or a division into the general catego­
ries of internalizing and externalizing problems.
As in studies of typically developing ado­
lescents;' investigations of those with devel­
opmental disabilities indicate that behavior
problems are not entirely biologically based.
Emerson, Robertson, and Wood (2005) found
higher levels of behavior problems among
those adolescents with intellectual disabilities
living in low-income areas; this relation was
stronger among those with relatively higher
intellectual functioning than in those with more
severe intellectual disabilities. The levels of
psychological distress experienced by parents
as well as the management strategies used by
parents (Emerson, 2003) are also correlates of
behavior problems in children and adolescents
with intellectual disabilities. The sociocultural
factors associated with increased likelihood
of behavior problems, such as aggression, in
typically developing youth (Watson, Fischer,
Andreas, & Smith, 2004) appear also to be
operational among those with developmental
disabilities, although such factors may possi­
bly operate differently among those with low
levels of cognitive skills.
For adolescents as a group, an increased
rate of psychiatric disorders has been noted to
occur during the adolescent period, particularly
depression among females and specific men­
tal health conditions, such as schizophrenia,
which have their onset during the adolescent
596 Adolescents with Developmental Disabilities and Their Families
•
or early adult period (Rutter, 1990). The
extent to which such disorders emerge during
adolescence among those with developmen­
tal disabilities is not known. Based on only
a few studies, an increased risk of psycniat­
ric disorders has been found for adolescents
on the autism spectrum. Tantam (2000), for
example, reported tnat sucn adolescents were
more likely to experience depression. In a
longitudinal study of adolescents with severe
intellectual disabilities, however, Chadwick
et at. (2005) found only a few cases «10%)
of individuals developing psycniatric disor­
ders de novo in adolescence. Tne reliability
of psychiatric diagnosis in those with intel­
lectual disabilities is uncertain, however, and
concerns about individuals with a dual diagno­
sis of intellectual disability and a psychiatric
disorder are mounting (Sturmey, Lindsay, &
Didden, 2007). One basis for such concerns
is the increasing awareness that the emotional
needs of those with intellectual disabilities
may have been overlooked by a focus on
their cognitive limitations. A related concern,
however, is the lack of strong evidence about
productive interventions for this population of
adolescents. although pharmaceutical, behav­
ioral, and, to a lesser extent, other therapies
are increasingly common and nave met with
some success (Hodapp et aI., 2006; Lounds
et aI., 2007).
In summary, it would be erroneous to
assume that all adolescents with developmental
disabilities have psychopathological problems.
Although the likelihood of behavior problems
is clearly much higher in this population than
in typically developing youth, over half of ado­
lescents with developmental disabilities do not
exhibit high leVels of problematic behaviors.
The riskofhaving psychiatric disorders is some­
what elevated; however, we know less about
the onset and course of such disorders among
adolescents with developmental disabilities.
The importance of diagnosing and treating
behavior problems and psychiatric disorders
should not be diminished, as such concerns are
likely to affect the adolescent's sense of self,
interaction with peers and family, and ultimate
well-being.
THEORETICAL MODELS OF
ADOLESCENT DEVELOPMENT:
APPLICATIONS TO ADOLESCENTS
WITH DEVELOPMENTAL
DISABILITIES
Several current themes in the scholarship on ado­
lescent development have particular relevance
to, and raise provocative questions about,
adolescents with developmental disabilities.
Adolescence is a time of identity exploration
and the development of a deeper and more com­
plex understanding of self. It is also a period of
establishing greater connection to others, espe­
cially peers, while reconflguring relationships
with parents and siblings. Finally, integral to
these psychological changes and concomi­
tant challenges and accomplishments is the
sense of personal agency that can promote or
dampen positive developmental change. Given
the cognitive and often social challenges of
many adolescents with developmental disabil­
ities, what do we know about their develop­
ment of a sense of self, their construction of a
peer network, and their enactment of agentic
behaviors?
Development of a Sense of Self
Adolescence is traditionally seen as a time of
identity formation, developing a coherent sense
of self based on values and ideological commit­
ments (Erikson, 1950). Although Erikson orig­
inally depicted a stage like progression in the
development of the ego, with identity forma­
tion as a core event in the life of the adolescent,
current theory places such formation within a
developmental systems model in which the
individual attempts to "make meaning" of his
or her experiences (Kunnen & Bosma, 20(0).
From the perspective of developmental sys­
tems theory, identity development is not inde­
pendent of other developmental transitions
as identity emerges in part from transitions
in cognition and metacognition, likely corre­
sponding with neurodevelopmental changes
Theoretical Models of Adolescent Development 597
•
in the brain that result in an integrated, reflec­
tive consciousness (Keating, 2004). Much
research reviewed in this volume indicates that
adolescence is a time when strength in execu­
tive processing emerges, not just for cognitive
tasks but also for social challenges. Gaining a
perspective of oneself (albeit a changing one)
is a hallmark of adolescence; yet research on
self-perception among adolescents with devel­
opmental disabilities is extremely limited.
How do adolescents with developmental dis­
abilities "make meaning" of their experiences
and view themselves?
[n one of the few investigations on this topic,
Davies and Jenkins (1997) conducted inter­
views with 53 young adults with intellectual
disabilities and their caregivers. They found that
only eight participants understood the terms tra­
ditionally applied to their disability (e.g., men­
tal handicap) and that most parents and other
caregivers reported choosing not to discuss the
meaning of such terms with the young adults.
Nevertheless, many of these young adults incor­
porated a sense of diminished personal agency
and of many societal limitations into theirview
of self, created through their daily experiences
with adults, including caregivers, parents, and
employers, who had authority over them.
Given current policies in the United States,
especially IDEA, that mandate the rights of ado­
lescents to participate in meetings involving
their educational future, parental decisions
about whether or not to discuss an adoles­
cent's disability with him or her may not Limit
the adolescent's actual knowledge of that
disability. Glidden and Zetlin (L 992) suggest
that part of the identity struggle for adoles­
cents with developmental disabilities is related
to the need for and resistance to awareness of
their differences, especially if they perceive
such differences as Likely to have an imme­
diate effect on their daily lives. Examples
of these differences-such as driving a car,
leaving home to live elsewhere, and having a
job--aU contribute to social comparisons for
adolescents with developmental disabilities.
especially during mid and late adolescence.
There are indications, however, that geno­
typical variations exist in self-concept. For
example, Begley (1999) found that the self­
concept of individuals with Down syndrome
appears to be more positive than those with
other intellectual disabilities and to increase
between middle childhood and adolescence.
She further found that such students differenti­
ated their sense of competence and their sense
of acceptance, as they tended to rate them­
selves relatively lower on scales measuring
the I~tter. Glenn and Cunningham (200 l) also
reported positive ratings of general self-worth
for adolescents and young adults with Down
syndrome with more discriminative distinc­
tions among domains of self-perception with
increasing mental age. Shields, Murdoch, Loy,
Dodd, and Taylor (2006) conducted a system­
atic review of self-concept in children and
adolescents with cerebral palsy in comparison
to other children and found that adolescent
females with cerebral palsy (in comparison to
typically developing adolescent females) had
a l.ower self-concept in the domains of social
acceptance, physical appearance, and athletic
and scholastic competence. As found for typi­
cally developing adolescents, social accep­
tance and physical appearance appear to be
areas that relate heavily to overall sense of self
(Harter, 1986).
Ironically, as Glenn and Cunningham
(200 I) note, if adolescents with developmental
disabilities have immature levels of cognitive
processing (i.e., below the mental age of 6-7
years), they tend to be more positive in their
views of themselves. For example, in a study
of children with spina bifida, Mincham et al.
(1995) reported that children with lower cog­
nitive performance gave themselves higher
ratings in the area of self-worth. This may be
because those with lower cognitive perfor­
mance, like preschool-age children, lack the
skills required to make social comparisons and
tend to describe themselves based primarily on
physical attributes (Selman, t 980). Moreover,
traditional measures of self-esteem and self­
concept require making fine distinctions, often
598 Adolescents with Developmental Disabilities and Their Families
•
on a Likert scale, that are not always apparent
to those with intellectual disabilities.
Given the difficulties in using quantita­
tive measures of self-concept, several studies
have employed qualitative methodoLogies to
describe the multiple tasks involved in develop­
ing a sense of self when one has a disability. In
a study by Olney and Kim (200 I), college stu­
dents with cognitive or emotional disabilities
explained the complex processes involved in
self-definitions that included their limitations
but did not simultaneously pathologize their
differences. Unlike those with physical disabil­
ities, they wrestled with whether and how to
disclose their disabilities to others. Like others
with disabilities, however, they worried about
stigmatizing and patronizing attitudes of peers.
Mpofu and Harley (2006) propose that
determinants of disability identity are similar
to those of racial identity in that both types of
identity are socially constructed phenomena.
They maintain that those with a healthy disabil­
ity identity view their disability difference as a
resource for growth. Like resilient racial iden­
tity described by Spencer (2006), resilient dis­
ability identity might serve vaLuable protective,
compensatory, and self-enhancement functions.
Racial identity, as described by Cross (200 I)
and Helms (1995), however, is a staged process
and the extent to which children and adolescent
with disabilities emerge through different life
phase understandings of themselves in relation
to having a disability is not known.
Moving beyond a psychological approach
to the question of identity development in
adolescents with developmental disabilities
to a philosophical one offers a different and
provocative per~pective. Much work in this
area is based on Foucault's (1994) themes of
power, knowledge, and subjectivity as activi­
ties that produce and maintain the concept
of disability as an "impaired body." Even the
term disability implies its opposite-ability­
and. according to this social theory, establishes
unnecessary dichotomies that impose on the
self-surveillance of individuals as they con­
struct an identity and a sense of self (Reeve,
2002). By shifting the emphasis on the phe­
nomenon of identity development from the
individual to the societal level, the adolescent
need not accept the larger social model and
instead can replace it with a view of self as a
social actor (Block, Bakazar, & Keys, 2002).
Empirical research is lacking, however, on
whether and how such shifts occur for adoles­
cents with developmental disabilities in their
understanding of self.
Development of a Peer Network
Adolescence is a time when social networks
often change both in breadth and in depth.
During the adolescent period, friendships typi­
cally change from being activity oriented to
being relationships with strong emotional ties
(Buhrmester & Furman, 1987). Friendships
during adolescence provide companionship
but also promote important social cognitive
advances in areas such as conflict resolu­
tion, reciprocity. intimacy, and dimensions of
trust and loyalty (Hartup, 1993). Friendships,
therefore. are important to an adolescent's
sense of well-being but also serve to advance
development in significant ways.
Because of federal mandates, adolescents
with developmental disabilities are now
included with typically developing adolescents
in many school classes and activities. Neverthe­
less, research on social interaction between
students with and without a disability, although
extensive for the preschool age group. is lack­
ing for the secondary school level. The few
studies that have been conducted report simi­
lar findings and point to the small and often
inadequate social networks of adolescents with
disabilities.
In a comparison of adolescents with
and without intellectual disabilities, Zetlin and
Murtaugh (1988) found that those with intel­
lectual disabilities not only had fewer friends
but also tended to have more relatives in their
friendship group. Moreover, their friendships
tended to be less stable and to have more
conflicts than those of typically developing
adolescents. A study by Heiman (2000)
Theoretical Models of Adolescent Development 599
indicated that high" levels of "feeling alone"
(three to four times higher) were reported by
students with intellectual disabilities in com­
parison to other students. They also were
less likely to meet their peers out of school.
Orsmond, Krauss, and Seltzer (2004) reported
that almost half of their sample of 235 adoles­
cents and adults with autism were reported not
to have any reciprocal peer relationships with
same-aged persons.
The nature of friendships of adolescents with
developmental disabilities has been explored
in a few studies. Bottroff et al. (2002) con­
ducted a small-scale study of adolescents and
young adults with Down syndrome and clas­
sified their friendships according to Selman's
(1980) model of developmental stages of
friendship formation. They found that only
25% of their sample could be classified at a
friendship level that indicated mutual trust and
reciprocity, whereas more friendships were
classified at the lower levels based on simple
proXimity. Several participants. however,
reported having imaginary friends, possibly a
compensation strategy for such adolescents.
In an ethnographic study of friendship among
adolescents with developmental disabilities,
Matheson, Olsen, and Weisner (2007) found
that participating in shared activities and being
perceived as similar were common themes
in determining friendships, as was an abil­
ity to be available over time. Unlike typically
developing adolescents, however, the adoles­
cents with disabilities stressed that attributes
of friendships often involved mere proximity
and being in a group together, whereas notions
of trust and reciprocity were mentioned less
frequently.
One reason for the lack nf strong reciprocal
friendships found among adolescents with
intellectual disabilities is likely related to indi­
vidual levels of social cognitive processes.
Interpreting social cues, developing strategies
for approaching and responding to peers. and
self-evaluation and monitoring are all central
processes required for productive social inter­
action. Research indicates that in each of these
areas individuals with intellectual disabilities
exhibit more difficulties than those develop­
ing typically (Leffert & Siperstein, 2(02).
Syndrome-specific patterns of relative strengths
and weaknesses in areas of social cognition
also exist. For example, children with Williams
syndrome often orient to and prefer social stim­
uli and are relatively successful in identifying
others, seeing others as approachable, and imi­
tating their affective states (Bellugi, Adolphs,
Cassady, & Chiles, 1999), whereas they are
less successful in perspective taking and deci­
sion making based on affective cues (Fidler,
Hepburn, Most, Philofsky, & Rogers, 2(07).
In a review of studies of children and ado­
lescents with Down syndrome, Wishart (2007)
speculated that their heightened sociability
may be misunderstood as having good interper­
sonal understanding. Highly sociable behavior
may, in fact, distract those with Down syn­
drome from deVeloping more complex social
cognitive skills necessary to collaborate with
and learn from others using joint engagement
on tasks. Studies on children and adolescents
with autism spectrum disorders indicate that
they have pronounced difficulty in social per­
spective taking, and thus t~nd to be limited in
their ability to perceive the world through the
eyes of others (Spector & Volkmar, 2006). This
deficit has been attributed to impairment in the
"theory of mind," that is. the ability to impute
mental states to oneself and others, and thus
make inferences regarding the thoughts of oth­
ers (Baron-Cohen, 1995 J. In general, the grow­
ing literature on syndrome-specific disabilities
is likely to lead to a greater understanding of
the various aspects of social cognition neces­
sary for the development and sustainment of
friendships during the adolescent years as
well as guide the field toward more productive
interventions for adolescents with develop­
mental disabilities who lack specific skills and
are either rejected or ignored by their peers.
Development of Self-Agency
From a developmental systems perspective, the
individual is an instrument of self-agency and,
600 Adolescents with Developmental Disabilities and Their Families
.. therefore, to some extent promotes his or her
own development (Lerner, 2002). The action
psychology model of Brandstadter (1998) and
the agentic model of Baltes (1997) are relevant
to the development of aU adolescents, but have
especially important implications for those with
developmental disabilities. Agency is indicated
in an adolescent's motivated approach to prob­
lem-posing tasks and situations, and is revealed
by the adolescent's overture to others, includ­
ing family members, engagement in the world
of work or further schooling, and attempts to
develop self-sufficiency to the extent possible.
Those whose agentic actions are intruded upon
or usurped by others risk developing behav­
iors indicative of learned helplessness, a pat­
tern that has been found to be typical of many
young adults with developmental disabilities
(Jenkinson, 1999).
Autonomy implies the ability to act according
to one's preferences, interests, and abili­
ties, and therefore requires knowledge of
self (Wehmeyer, 1996) but also involves the
opportunity for choice. The importance of
self-agency, which is required for autonomous
behavior, is a continuing theme in the literature
on children with developmental disabilities. In
our longitudinal study of children with Down
syndrome, motor impairment, or developmen­
tal delay (Hauser-Cram, Warfield, Shonkoff, &
Krauss, 2001), we found that children's early
stri vings for agency predicted their adap­
tive skill development over a IO-year period.
From a systems perspective, positive skill
development is likely to provide children and
adolescents with additional opportunities for
self-detennination, which in tum compounds
the positive effects of agency.
Wehmeyer has cbnducted a series of studies
on self-determination in individuals with
developmental disabilities. In an investigation
of adolescents, he reported both a positive
relation between self-determination and age
as well as higher scores for typically develop­
ing adolescents in comparison to those with
disabilities (Wehmeyer, 1996). Considering
only individuals with intellectual disabilities,
Wehmeyer and Garner (2003) reported a low
correlation between level of intelligence and
self-determination scores with only opportuni­
ties for choice (not intellectual performance)
predicting membership in a high. self­
determination group. Wehmeyer and Schwartz
(1998) reported that adolescents with devel­
opmental disabilities who had higher levels of
self-determinatton had more positive adult out­
comes. including higher rates of employment.
Employment offers one opportunity for
increased autonomy, since through employ­
ment adolescents often develop a sense of
responsibility, increased self-reliance. and
expanded social networks. The employment
of adolescents and young adults with devel­
opmental disabilities has received more atten­
tion than any other aspect of this phase of
life. Findings from the National Longitudinal
Transition Study 2 (Wagner, Newman, Cameto,
Levine, & Garza, 2006). a longitudinal sur­
vey-based study of adolescents with a wide
range of disabilities. indicated that at the time
of the survey more than 40% of youth were
employed, compared to 63% of the same-age
out·of-school youth in the general population.
These rates of employment varied consider­
ably, however. based on type of disability,
with highest rates among those with learn­
ing disabilities and far lower rates among
those with intellectual disabilities. Rates also
varied based on ethnicity, with highest rates
among whites and lowest rates among African
Americans and Native Americans. These fig­
ures indicate generally more positive trends
than found in data collected two decades ago.
but they still accentuate lower rates for those
with disabilities than for the typically devel­
oping population, and they mimic the social
inequities by ethnicity. Wagner et al. (2006)
found that the reliance on low-paying care­
giving jobs for females has decreased and the
percentage of jobs in the trades has increased
among males. Despite such generally posi­
tive trends in engagement in employment for
adolescents and young adults with disabilities,
students with cugnitive disabilities report that
Theoretical Models of Adolescent Development 601
•
they have few opportunities to work in paid
jobs in career areas of their choice (Powers
et ai., 2007).
One of the greatest changes over the last
decade has been an increase in opportunities
for youth with developmental disabilities to
attend postsecondary education programs.
Wagner et ai. (2006) found that about 30% of
youth with disabilities were enrolled in some
type of postsecondary schooL Although this
rate is still lower than that among typically
developing youth (41 %), this figure illustrates
the potential role of community colleges and
other institutions in increasing their services to
adolescents and young adults with disabilities.
Howlin (2000) notes the expanding number
of higher functioning adolescents with autism
spectrum disorders who now attend college,
especially smaller colleges, supported by
a range of mental health and peer mentor­
ing services. The need for such postsecond­
ary programs is likely to continue to grow as
adolescents with developmental disabilities
who have experienced education under the
support of the IDEA emerge from high schools
and push for a range of future educational and
employment training opportunities.
Transition in Relationships with
Parents
One of the hallmarks of adolescence is a
reconfiguration of relationships with parents
from one of dependency toward one of greater
mutuality. Although such reconfiguration often
involves struggles on the part of both the ado­
lescent and the parent, national data indicate
that most adolescent-parent relationships are
positive (Moore, Guzman, Hair, Lippman, &
Garrett, 2004). Such close and positive adoles­
cent-parent relationships are related to a wide
range of benefits for adolescents, including
better academic outcomes and fewer problem
behaviors (Moore et at., 2004).
Most adolescents with disabilities also
report having strong and positive relationships
with their parents (Wagner et aI., 2006). They
differ from other adolescents, however, in that
they report receiving a great deal of attention
from their families, more so than that reported
by other adolescents (Wagner et aI., 2006).
Although such attention may indicate high lev­
els of protection, resulting in less development
of autonomy, it may also be a response to the
adolescent's need for support from a trusted
adult. Collins and Laursen (2004) propose that
adolescent-parent relationships often serve
to modify the impact of deleterious sources
of intluence, such as difficulties at school or
destructive peer relationships. Although this
proposition has not been tested explicitly in
relation to adolescents with disabilities, survey
data from parents of adolescents or young adults
with disabilities leaving high school indicate
that parents are well aware of the dilemmas they
face regarding their dual role in the promotion
of independence and the protection from harm
of their child (Thorin, Yovanoff, & levin. 1996).
Protection may limit immediate opportunities
for independence but may serve an intermediate
function that, in turn, promotes autonomy. For
examp\e, Dixon and Reddacliff (200 I) found
that parental behaviors aimed at protecting their
adolescent with developmental disabilities from
difficulties and exploitation also led to more
successful employment outcomes.
Current trends in the United States indicate
that many young adults return to reside with
their parents during some periods of their
young adult life (Arnett, 2004; DaVanzo &
Goldscheider, 1990). In contrast to returning to
the family home for brief periods of time, many
adolescents with developmental disabilities
live with their parents consistently for many
years (Fujiura & Braddock, 1992; Seltzer &
Krauss, 1984). Seltzer, Greenberg, Floyo,
Pettee and Hong (200 I), using data from the
Wisconsin Longitudinal Study, found that 57(7c
of the sons and daughters with a develop men ­
tal disability and 41 % of those with multiple
mental health problems continued to live with
their parents, in contrast to only 16% of sons
and daughters without disabilities. In a study
of individuals with developmental disabilities
who had attended special education programs,
602 Adolescents with Developmental Disabilities and Their Families
ScuC$imarra and Speece (1990) found that the
majority resided with their parents, although
over 75% of those individuals said they would
prefer to live independently. Kraemer and
Blacher (200 I) investigated the living situa­
tions of young adults with low levels of intel­
lectual functioning and found that the majority
lived at home; furthermore, their parents did
not identify leaving home as a primary goal
for their child. Thus, the reasons that the young
adult with developmental disabilities most likely
continues to live at home appear to be multiply
detemUned, based on a confluence of parental
choice, whether living options are available,
and the extent and the desire of the adolescent
or young adult to advocate for such change.
Parents and other family members serve as a
potentially strong support network for individuals
with developmental disabilities but may also sub­
stitute for friends. In a study of young adults with
mild to severe disabilities, McGrew, Johnson, and
Bruininks (1994) reported that an inverse rela­
tion occurs between the number of family and
non-.family members in their social networks.
Therefore, the parent-child relationship, although
always complex, becomes increasingly so for
adolescents with developmental disabilities, espe­
cially those who rely on parents for many a'>pects
of their daily living and social activities.
FAMILIES OF ADOLESCENTS
WITH DEVELOPMENTAL
DISABILITIES
Although early studies of parents of chil­
dren with disabilities focused on issues such
as "chronic sorrow" of parents (Olshansky,
1962), and assumed deleterious functioning of
the parents, current research provides a more
nuanced view of families. Drawing from sev­
eral perspectives, a broad understanding of the
family and its tasks and functioning over time
have guided current investigations.
Conceptual Perspectives in Family
Research
There has been a surge of research in the past
several decades on the influence of children with
developmental disabilities on their families and
the influence of families on the development of
children with developmental disabilities (e.g.,
Greenberg, Seltzer, Hong & Orsmond, 2006;
Hauser-Cram et at., 2001; Keogh, Garnier,
Bernheimer, & Gallimore, 2000; Kersh,
Hedvat, Hauser-Cram, & Warfield, 2006;
Mink, Nihira, & Meyers, 1983; Parish, 2006;
Seltzer & Heller, 1997). This body of research
has roots in transactional theories of human
development (Lerner, 2002; Sameroff &
Fiese, 2000), models of the ecology of human
development (Bronfenbrenner, 1979), fam­
ily systems theory (Minuchin, 2002; Olson,
Russell & Sprenkle, 1983), and family life
cycle theory (Carter & McGoldrick, 1980).
Common to all these theoretical roots are three
core propositions:
I. [ndividual development is shaped by both
the biological attributes of the individual
and the multiple and complex environ­
mental contexts over the life course in
which the individual exists.
2. Changes in the individual and hislher
environment affect other members of the
individual's environment in reciprocal and
iterative ways.
3. There are predictable stages in human and
family development that shape the tasks,
functions, and behaviors of individuals
and other family members.
Although this chapter focuses on a particular
life stage for individuals with developmental
disabilities and, by extension, of their families,
much of what conditions the development of
the adolescent and his/her family during this
protracted period is linked to prior periods of
individual development and family palterns,
and is affected by the anticipated outcomes for
the adolescent during adulthood.
[n order to provide a context for consider­
ing the family environment of adolescents
with developmental disabilities, a brief disclls­
sion of family life cycle theory is provided.
Family life cycle theory posits that just as
Families of Adolescents with Developmental Disabilities 603
•
individuals have stages of development, fami­
lies as a collective unit pass through predict­
able stages over the life course. These stages
are typically defined by the employment sta­
tus of the head of the household, the entry
into and exit of family members from the fam­
ily, and the age of the oldest child in the family.
Theorists of the family life cycle posit a vari­
able number of stages, from as few as seven
(Duvall, 1957) to as many as 24 (Rodgers,
1960). The most commonly used set of stages
include the following: couple, childbearing,
school age, adolescence, launching, postpu­
bertal, and aging (Olson, McCubbin, Barnes,
Larsen, Muxen, & Wilson, 1984). Within each
stage, there are specific tasks and functions
that families perform, including economic,
physical, rest and recuperation, socialization,
self-definition, affection. guidance, educa­
tional, and vocational (Turnbull. Summers, &
Brotherson, 1986). For each stage, the priori­
ties of these different functions vary and the
roles that individual family members assume
in the conduct of these functions reflect their
individual developmental capabilities and
needs. Particular functions may be heavily
influenced by the age of the child.
For example, during the adolescent period,
there is usually less emphasis by parents on the
physical care of their child and greater empha­
sis on the child's vocational preparation. In
contrast to the childbearing stage, when physi­
cal affection and contact is a dominant feature
of the parent-child relationship, the adolescent
stage is characterized by an emphasis on "letting
go" and on reducing child dependency.
Contemporary Perspectives on Family
Impacts
While there is scant research on the reciprocal
influences of parents on their adolescents with
developmental disabilities, there is a broader
literature available on the life-span impacts on
families of having a child with a developmental
disability (Seltzer, Greenberg, Floyd, Pettee &
Hong, 200 l; Seltzer, Krauss, Orsmond,& Vestal,
200 I). Research on the role of the family
for individuals with developmental disabili­
ties acknowledges that the family occupies a
central and enduring role over the life course
and that taking a life-span perspective reveals
undeniable stresses on parental well-being and
health, as well as positively regarded accom­
modations to family life and values (B lac her &
Baker, 2007; Heller, Hsieh, & Rowitz, 1997;
Krauss & Seltzer, 1994).
Over the past several decades, there also
has been a shift in perspectives on the impacts
on families of having a son or daughter with
a developmental disability. Decades ago, the
common view among professionals and society
at large was that having a child with a develop­
mental disability was a burden on the family
and was associated with deleterious outcomes
for the parents and siblings (Hodapp, Ly,
Fid ler, & Ricci, 200 l). Indeed, out-of-home
placement of the affected child was commonly
recommended (Seltzer & Krauss, 1984). With
the advent of the parents' movement and
changes in social policies ensuring educational
and social services for persons with develop­
mental disabilities since the 196Os, the role of
and impacts on the family have been viewed
from new perspectives that acknowledge the
complex and multifaceted ways that families
adapt to their caregiving responsibilities.
Helff and Glidden (l998) reviewed research
on family impacts over a 20-year period (from
the 1970s through the 1990s) and found that
while there wa<; a decrease in the "negativity"
of the research, there was not a concomitant
increase in perceived positivity of family
impacts. Blacher and Baker (2007) provide an
interesting three-level conceptual scheme for
identifying positive impacts on families. The
first is that positive impacts may be inferred by
the absence of negative impacts (the "low neg­
ative" level). The second, called the "common
benefits" level. refers to families experiencing
the same joys and frustrations with their child
as is typical of all families. The third, called
the "special benefits" level, implies that there
are unique benefits associated with having a
child with a developmental disability.
604 Adolescents with Developmental Disabilities and Their Families
•
Indeed, there is a growing body of literature
that focuses on the resilience found among
many families who have a child with a devel­
opmental disability. The concept of resilience
implies more than just coping with a situa­
tion-it includes the capacity to withstand
hardship and rebound from adversity. Scorgie
and Sobsey (2000) examined parental views
on the transformations they have experienced
because of having a child with a developmen­
tal disability and found evidence of three major
areas of transformational change: personal
growth, improved relations with others, and
changes in philosophical or spiritual values.
Bayat (2007) surveyed 175 parents of children
and adolescents with autism regarding factors
contributing to "family resilience" and found
evidence of family resilience such as family
connectedness and closeness, positive mean­
ing-making of the disability, and spiritual and
personal growth. Grant, Ramcharan, and Flynn
(2007) reported three core elements associated
with resilience at the individual level--search
for meaning, sense of control, and maintenance
of valued identities.
Dykens (2005) reviewed contemporary lit­
erature with respect to happiness, well-being,
and character strengths as outcomes in families,
including siblings, of persons with intellectual
disabilities. She notes that the "stress and cop­
ing" model used in many studies is useful in
identifying why some families cope well with
the common and unique stresses of having a
child with a disability and others do not. Rather
than assume that psychopathology is an inevi­
table outcome for such families, as was com­
mon decades ago (Olshansky, 1962; Sol nit &
Stark, 1961), studies now focus on why many
families cope well' and derive valued mean­
ings from their experiences. lndeed, there is
considerable evidence that mothers with prob­
lem-focused coping styles generally fare better
than those with emotional coping styles (Kim.
Greenberg, Seltzer & Krauss, 2003).
According to Dykens (2006), the burgeoning
interest in "positive psychology" (Seligman,
2(00) should be extended to studies of persons
with intellectual disabilities (and their fami­
lies), for whom she argues that emotional
states such as happiness, gratifications, and
flow are relevant outcomes worthy of empiri­
cal investigation. Thus, there is a growing
interest within the research community study­
ing impacts on families of having a child with
a developmental disability to examine positive
contributions of such children (Hastings, Beck,
& Hill, 2(05), transformational (and posi­
tive) impacts on family members (Scorgie &
Sobsey, 20(0), and factors associated with a
"meaningful life."
Challenges to the Family in the
Adolescent Period The adolescent period is sometimes character­
ized by heightened turmoil for parents, who must cope with the effects of the biological, cognitive, social, and psychological matura­
tion of their adolescent as well as parental tran­
sitions into the midlife period (Seltzer, Krauss. Choi, & Hong, 1996). Part of the transition from childhood to adulthood includes the "push
and pull" of relinquishing parental roles of
protectiveness. close supervision, and author­
ity while adopting parenting styles that respect
the adolescent's emerging needs for autonomy,
independence, and more egalitarian relation­
ships with the parents. When the adolescent
has a developmental disability, however. the
normative tasks of adolescence and the norma­
tive tasks of parents during this period may be
experienced in ways that are both similar and
distinct in comparison to families of typically
developing adolescents. As Zetlin and Turner
(1985) note. "although retarded individuals
experience the same biological changes and
drives as nonretarded youngsters, the issues
associated with adolescence--..emancipation.
self concept. sexuality-are exacerbated by
the presence of their handicap" (p. 571 ).
Turnbull et aL (1986) articulated the major
stressors arising from different family life
course stages and the transitions across them
for families of children with developmental dis­
abilities. With respect to the adolescent period,
Families or Adolescents with Developmental Disabilities 605
It
they note particular stressors such as the emo­
tional adjustment to the chronicity of the hand­
icapping condition and related issues such as
peer isolation. Further, many families remain
deeply involved in arranging for leisure-time
activities as well as participating in educational
and vocational planning tasks. Although some
of these stressors are applicable to all families
of adolescents (e.g., issues surrounding emerg­
ing sexuality, dealing with physical and emo­
tional changes of puberty), some are relatively
distinctive features of parenting a child with
a developmental disability (e.g., future plan­
ning for vocational development, arranging
for leisure-time activities, participation in rEP
meetings). Indeed, as discussed below, paren­
tal roles in the transition of adolescents with
developmental disabilities from school to work
is one of the major areas of research on paren­
tal involvement during this life stage.
There is substantial evidence that the
adolescent period ha..<; particular and specific
stressful content for parents of children with
developmental disabilities. The stressful content
seems to span various dimensions, including
sobering appraisals of the child's developmen­
tal status, awareness of the potential for con­
tinued dependence (rather than independence)
on the family, parallel parental transitions into
their own midlife phase (and its attendant psy­
chological tasks) (Todd and Jones, 2005), and
trepidation over the end of federally guaran­
teed rights to services as children leave the
special education system. Schneider et aL
(2006) conducted ecocultural interviews with
families of adolescents with severe disabilities
and found both internal and external challenges
to the maintenance of a meaningful family
routine. Internally: famiLy roles and relation­
ships underwent change, resulting in various
strategies to accommodate these changes (e.g.,
dividing up family time, protecting some mem­
bers from too much involvement and engag­
ing others in family activities). Externally,
service discontinuities associated with the
adolescent period were accommodated by var­
ious strategies such as advocacy, coordinating
multiple services and forfeiting a desired alter­
native. Their research illustrates the dynamics
within families of managing the needs of and
impacts on the family as a unit during the ado­
lescent period.
Baine, McDonald, Wilgosh, and Mellon
(1993) conducted quantitative and qualita­
tive research on sources of general and unique
family stress among families of adolescents
with severe disabilities. The most stressful
issues included characteristics of the adolescent
(i.e., dependency, lack of autonomy, individual
vulnerability, physical size, severity of dis­
ability) and aspects of the service systems that
support these individuals (i.e., transition from
school to adult services, eligibility for govern­
ment assistance, residential costs). The least
stressful aspects related to family interpersonal
dynamics (i.e., sibling relationships, paren­
tal philosophy). Follow-up interviews with a
subsample of the families participating in the
quantitative portion of their research revealed a
deeper and wider range of concerns than were
evident in the numerical ratings of the areas of
potential stress. The authors (Baine et aI., 1993)
summarized parental concerns about individual
characteristics of their adolescents with devel­
opmental disabilities as follows:
The parents expressed particular concerns
about long-tem1, family life-planning related to
chronic dependency of the persons with disabili­
ties; physical management problems related to
the increasing size and strength of the individ­
ual; concerns related to cleanliness. grooming,
aggression, and inappropriate age and gender
related behavior (e.g., expression of affection),
and the amount of care required Cwe must plan
everything around his needs'). (p. 185)
With respect to stressors for the family, the
qualitative information revealed concems about
the costs of long-term care, often requiring family
sacrifices, parental tension regarding the role or
level of involvement of fathers, and the strain
on parents of having to organize or create a
social, educational, and supportive world for
their adolescent child.
606 Adolescents with Developmental Disabilities and Their Families
H~is, Glasberg, and Delmolino (1998)
propose that for families of children with
developmental disabilities, adolescence may
signify the end of illusion. Parental aspirations
and dreams about dramatic changes in their
child's functional abilities may be tempered
by a clearer awareness of the child's develop­
mental trajectory. Bristol and Schopler (1983),
for example, note that parents of adolescents
with autism have a greater sense of realism
and pessimism about their child's development
in comparison to parents of younger children
with this disorder.
Wikler (1986) suggests that there is a cyclical
quality to family stress over different develop­
mental stages. Her research indicates that stress
is highest in families of a child with develop­
mental disabilities who is just entering early
adolescence or early adulthood, as compared to
stress among families whose child with disabili­
ties is in later adolescence or further into young
adulthood. One explanation for the increased
stress for families of adolescents with disabili­
ties was attributed to the degree of community
acceptance offered to children with develop­
mental disabilities at different life stages.
DeMyer and Goldberg (1983) and Bristol
(1984) note that as children with developmen­
tal disabilities age, their behaviors are less well
tolerated by society and they are less socially
acceptable than younger children who, despite
their disabilities, may be seen as "cute" or
whose atypical behaviors are less different from
the range of behaviors of typically developing
children. The lack of community acceptance
for adolescents with developmental disabilities
may translate into greater social isolation of
their families, and may instill a greater rigidity
of family routines, in comparison to families
of typically developing adolescents for whom
social acceptance issues are less pressing and
for whom more reLaxed family routines often
emerge as a consequence of the increasing
independence of their adoLescent
For many parents of children with develop­
mentaL disabilities, there is a complex mixture
of gratification and frustration encountered
in the parenting experience, leading to what
Larson ( 1998) calls the "embrace of paradox."
Based on a study of Latina mothers of children
with developmental disabilities, Larson (1998)
explained this phenomenon as follows:
Despite what would appear as multiple limita­
tions in their daily lives due to the caretaking
of a child with disability, these mothers shared
hopeful maternal visions and profound personal
growth that emerged because of this experi­
ence. What surfaced ... was a life metaphor,
the embrace of paradox, that was central to the
mothers' maternal work. The embrace of para­
dox was the management of the internal tension
of opposing forces between loving the child as
he or she was and wanting to erase the disabil­
ity. between dealing with the incurability while
pursuing solutions, and between maintaining
hopefulness for the child's future while being
given negative information and battling their
own fears. (p. 873)
Parental narratives of their lives with children
with developmental disabilities echo Larson's
description, particularly during the adoles­
cent period, when the realignment of parentaL
roles in the face of their child's efforts towards
independence and autonomy constitutes a
compelling family challenge (e.g., Dunsford,
2007; Kaufman, 1999; Park, 2001; Todd &
Jones, 2005).
Zetlin and Turner (1985) conducted an
ethnographic study of 25 young adults with
mild intellectual disabiLities about their adoles­
cence. The study included in-depth participant
observation and interviews with the young
adults and extensi ve interviewing of their
parents. Their resuLts provide insights into the
interactions between parents and adolescents
with intellectual disabilities during a stage of
life when, for some, the social consequences
of their disabilities become painfully manifest.
They concluded that:
. . . it appears that both parents and sample
members viewed the adolescent experience
as more problematic than either the childhood
Families of Adolescents with Developmental Disabilities
607
.. period or the adult years and generally agreed
on the nature of the adolescent contlicts. For
the most part, these retarded adolescents were
concerned with the same issues that preoccupy
nonretarded adolescents-personal identify and
autonomy. They interpreted parental attitudes
and practices as nonsupportive and issues of
competence and self-definition as sources of
frustration and self-conflict. . . . The implica­
tions of their handicapped status as well as their
limitations were salient concerns for the first
time, and many of their experiences-parental
restrictiveness. peer rejection, expectancy-per­
formance discrepancies-contributed to their
uneasines3 and discontent. (p. 578)
particularly problematic. Because of the ongo­
ing and heightened responsibilities of parents
in planning for the fmure of their adolescents
with disabilities, parental involvement in shap­
ing the future may be far more extensive than
is the case among families of typically devel­
oping adolescents. Thorin, ¥ovanoff, and Irvin
(1996) articulated the six most common dilem­
mas reported by parents of adolescents with
developmental disabilities as wanting to:
•
There is a growing body of literature that
examines changes in the parent-<;hild relation­
ship during the adolescent period. Orsmond,
Seltzer. Greenberg, and Krauss (2003) studied
the mother-<;hild relationship among 202 ado­
lescents and adults with autism living at home
and found that for most of their sample. the
mother-<;hild relationship was characterized
as positive across multiple measures. They
also found that greater positive affect and
warmth from the mother to the child was pre­
dictive of fewer maternal caregiving strains
and greater caregiving gains. [n a subsequent
analysis from this study, Lounds et aL (2007)
reported that during the adolescent period,
there was a dominant pattern of improvement
in maternal well-being and a closer relation­
ship with their son or daughter with autism.
Interestingly. they found that mothers of
daughters experienced significantly greater
reduction in depressive symptoms and increasing
closeness in the mother-£hild relationship over
the l.S-year study period than mothers of sons.
Planning as a Unique Task for
Families of Adolescents
As noted earlier, one of the markers of the
end of the adolescent period is the assump­
tion of adult roles, including employment.
self-sufficiency, and formation of indepen­
dent family units. For many individuals with
developmental disabilities, these roles are
•
•
•
Create opportunities for independence for
the young adult, especially in light of health
and safety necds.
Do whatever is necessary to assure a good
life for him or her.
Provide stability and predictability in the
family life while meeting the changing
needs of the young adult and family.
Create a separate social life for the young
adult.
Avoid parental burnout.
Maximize the young adult's growth and
potentiaL
This enumeration of parental dilemmas
underscores the fact that for many families of
adolescents with developmental disabilities,
the parental role intensifies rather than dimin­
ishes during the period of transition to adult­
hood. Parental involvement occurs in regard to
fundamental issues of protecting their child's
health and safety, to constructing or arranging
environments in which their child's social and
economic life can be supported, and to provid­
ing a context in which their child's capabili­
ties are maximized. These tasks constitute an
atypical agenda in comparison to the tasks of
parents of typically developing adolescents.
Indeed, the degree of planning that families
need to do--~repeatedly---over the life cycle
has been consistently underscored. Nadworny
and Haddad (2007) propose that planning is a
lifelong activity, providing opportunities for
reassessing goals and roles that various family
members (and extended support people) can
assume. They also note that planning must take
608 Adolescents with Developmental Disabilities and Their Families
into accou"nt the needs of all family members,
not just the member with a developmental dis­
ability. FinaLLy, they note that there are specific
"pressure points"-transitions in the service
delivery system and age-related changes-that
punctuate particular planning needs. These pres­
sure points need to include an examination of
family issues, emotional needs, fmancial issues,
legal considerations, and government benefits.
One of the unique tasks facing families of
adolescents with developmental disabilities is
planning for their adolescent's transition from
special education services to adulthood. There
is considerable evidence that the prospect of
losing the mandated educational and related ser­
vices guaranteed by the IDEA when a child with
a disability reaches the age of 22 is one of the
most stressful aspects of the adolescent period
for parents (Thorin & Irvin, 1992). Recent
estimates suggest that over 2 million students
between ages 14 and 21 receive special educa­
tion services under the IDEA (U.S. Department
of Education, 2007a). Of these, approximately
400,000 exit the school system each year and
enter the adult world (U.S. Department of
Education, 2007b). As indicated in an earlier
section, a component of the Individuals with
Disabilities Education Act (IDEA) of 1990
requires that an individualized transition plan be
crafted as part of a student's rEP that identifies
needed transition services. Parents are expected
to be part of that planning process.
Studies of the "transition process" from
school to work have found that parents of
children with disabilities are significantly less
involved in transition planning than they desire
to be (McNair & Rusch, 1991), although it
appears that parental involvement increases as
the severity of the child's disability increases
(Kraemer & Blacher, 200 I). Because a hall­
mark of being an adult is being employed
(leading to economic self-sufficiency), and
because of the many social benefits attrib­
uted to being employed, there is a great deal
of attention in the practice and research lit­
erature on efforts by parents and service sys­
tems to enhance the future employability of
adolescents with developmental disabilities.
Parental expectations for the future vocational
activities of their adolescents with disabili­
ties are an important factor in such transition
plans. In a study conducted by Kraemer and
Blacher (200 I ), .almost two-thirds of parents
of children with severe intellectual disabilities
expected their child to work, most commonly
. in a day activity center or sheltered workshop.
Parent roles in achieving desired vocational
outcomes were examined in a qualitative study
that identified the following important family
characteristics: moral support, practical assis­
tance, role models of appropriate work ethic,
protection from difficulties and exploitation,
and family cohesion (Dixon & Reddadiff,
200 l). Clearly, parents occupy a critical posi­
tion in the lives of youth with developmental
disabilities, and parents' engagement in plan­
ning activities for the adult life of their ado­
lescent constitutes a major family task of the
adolescent period.
Sibling Relationships
There is very little research that has focused
specifically on the sibling relationships of youth
with disabilities during the adolescent years.
The few studies that have been conducted indi­
cate that these relationships appear to be quali­
tatively different from those that exist between
typically developing siblings. Krauss and
Seltzer (200 I) reported that siblings of brothers
and sisters with disabilities often experience
issues that are unique to their family situation
and that lllay set them apart from their friends
who do not have a sibling with a disability.
The relationships among typically developing
siblings are often characterized by two par­
ticular dimensions of involvement-affective
involvement and instrumental involvement--­
and these dimensions have been studied,
although to a lesser ex.tent, among siblings
when one has a developmental disability.
Affective Involvement
Research on the relationships shared by typi­
cally developing siblings often focuses on two
Families of Adolescents with Developmental Disabilities 609
•
affective components: the positive dimension
of warmth and the negative dimension of con­
flict (Bowerman & Dobash, 1974; Furman &
Buhrrnester, 1985). The relationships between
individuals with disabilities and their siblings
are frequently characterized by warmth and
affection across a range of ages and life-course
stages, including adolescence and young adult­
hood (e.g., Bagenholm & Gillberg, 1991;
Begun, 1989; Eisenberg, Baker, & Blacher,
1998; Gath, 1973; McHale, Sloan, &
Simeonsson, 1986; Rivers & Stoneman, 2003;
Stoneman, Brody, Davis, & Crapps, 1987b).
Siblings of individuals with disabilities appear
to demonstrate more nurturance, empathy, and
emotional support for their brothers and sisters
than do comparison siblings of typically devel­
oping individuals (Abramovitch, Stanhope,
Pepler, & Corter, 1987; Cuskelly & Gunn,
2003; Hannah & Midlarsky, 2005; McHale &
Gamble, 1987; McHale et aI., 1986). This
substantiates the depiction of the more domi­
nant, "parentified" role these siblings appear to
adopt in their relationships with their brothers
and sisters across the life span.
Siblings of children with a variety of disabil­
ities generally report comparatively low lev­
els of conflict in their relationships with their
brothers and sisters (Cuskelly & Gunn, 2003;
Eisenberg et aI., 1998; Fisman, Wolf, Ellison, &
Freeman, 2000; Kaminsky & Dewey, 2001;
McHale & Gamble, 1989; Roeyers & Mycke,
1995). They frequently describe the most
negative aspect of their relationships in a
very different manner; when asked about
the negative aspects of having a sibling with
a disability, many siblings mention worry
(Eisenberg et aI., 1998) III a Dutch study, 75%
of typically developing brothers and sisters
reported that they sometimes worried about
the future and/or their sibling's health (Pit-ten
Cate & Loots, 2000). Moderate levels of worry
and concern have been documented in siblings
of both adolescents (Kersh, 2007) and adults
with developmental disabilities (Orsmond &
Seltzer, 2000). Furthermore, meta-analysis has
shown that anxiety is one area of psychological
adjustment where siblings of children with
disabilities and comparison peers do seem to
evidence real differences (Rossiter & Sharpe,
200 I). It is possible that this documented anxi­
ety is closely connected to feelings of worry
about their brothers and sisters, and the future
of their families in generaL
These relationships may differ from the nor­
mative view of sibling relationships in other
ways, as well. Dunn (2002) describes intensity
and intimacy as dominant themes in the lit­
erature on normative sibling relationships. [n
contrast, there is evidence to suggest that sib­
ling relationships in which one child has a dis­
ability are lacking in both those areas. Begun
(1989) asked adolescent and adult females to
rate their relationships with their siblings both
with and without disabilities. Comparisons
across 16 dimensions of sibling relationship
revealed distinct differences between the rela­
tionships these women had with their siblings
with intellectual disabilities and their relation­
ships with their typically developing siblings.
They described their relationships with their
siblings with developmental disabilities as
characterized by significantly greater nUrtur­
ance of and dominance over their siblings and
lower levels of admiration. They also rated
these relationships as being less intimate,
less competitive, and characterized by less
perceived similarity between the two when
compared to the relationships they shared
with their typically developing brothers and
sisters. Begun concluded that, despite some
strong positive aspects, the relationships that
these women shared with their brothers and
sisters with disabilities appeared to be more
affectively neutral (i.e., less intense) than
their relationships with their siblings without
disabilities.
Instrumental Involvement
A large body of research indicates that the sib­
lings of children with disabilities spend more
time involved in caregiving activities than
their peers with typically developing brothers
and sisters, regardless of age or birth order
610 Adolescents with Developmental Disabilities and Their Families
•
(Hannah & Midlarsky, 2005; McHale &
Gamble, L989; Stoneman, Brody, Davis,
Crapps, & Malone, 1991). [n addition, these
siblings are more directive in their interac­
tions with their brothers and sisters when
compared to siblings of typically deveLoping
youth (Dallas, Stevenson, & McGurk, 1993;
Stoneman et aI., L987b). The durability of the
sibling relationship has also been noted. [n a
survey of adult sibLings of persons with intel­
lectuaL disabilities, about a quatter indicated
that they planned to cores ide with their brother
or sister when their parents could no lon­
ger take care of the family member (Krauss,
Seltzer, Gordon, & Friedman, L996).
It is generally acknowledged that these sib­
ling relationships appear to follow an atypical
pattern of development. [n typically developing
sibling pairs, the older sibling assumes a domi­
nant role in the family hierarchy, but over time
the reLationship becomes more egalitarian, as
both siblings approach adulthood (Buhrmester &
Furman, 1990). [n dyads in which one sibling
has a disability, the typically developing sibling,
regardless of bitth order, generally assumes a
dominant role that is characterized by high lev­
els of helping and custodial behavior, and these
relationships often become increasingly imbal­
anced over time (Abramovitch et aI., 1987;
Corter, Pepler, Stanhope, & Abramovitch,
1992; Dallas et aI., 1993; Stoneman, Brody,
Davis, & Crapps, 1987a).
The patterns of relationship that are
evidenced in sibling pairs when one has a
disability might be atypical; however, it does
not necessarily follow that they are a source
of risk. Although it is largely accepted that
siblings bear greater responsibility in the
home when there is a child with a disability in
the family, it is not clear that this heightened
responsibility leads to negative outcomes (e.g.,
Cuskelly & Gunn, 1993). Greater child care
responsibilities have also been associated with
greater empathy (Cuskelly & Gunn, 2003) and
less sibling conflict (Stoneman et at., 1991).
McHale and Gamble (1989) found that the
amount of time spent in child care activities
was positively associated with anxiety, but not
with depression, self-esteem, or conduct prob­
lems. Since the anxiety reported by this group
of siblings did not approach clinical levels, the
authors concluded that it might simply repre­
sent a normative response to the special care
needs of a loved one. In other words, children
and adolescents with more severe impair­
ments require greater levels of care and may
also simultaneously provoke more anxiety or
worry in family members.
Kersh (2007) found that the functional level
of adolescents with developmental disabilities
was a powerful predictor of multiple aspects of
sibling invol vement. Siblings engaged in greater
caregiving and supportive helping behaviors
(e.g., providing emotional support) when their
brothers and sisters had lower cognitive and
adaptive abilities. They also expressed greater
warmth and more worry and concern for their
adolescent brothers and sisters with develop­
mental disabilities who had lower functional
skills. Given that the majority of the siblings
in that study were also adolescents, perhaps the
overall functional level of a brother or sister with
a developmental disability has particular salience
for youth at this stage of development. During
this stage, teens are often in the process of rene­
gotiating and redefining their roles and relation­
ships within the famiLy (Steinberg, L990). [t may
be that the functional skills and level of need of a
brother or sister with a disability are particularly
instrumental in this process. Indeed, the work of
Wilson, McGillivray, and Zetlin (1992) suggests
that the predictive power of functionality (with
regard to sibling involvement) may dissipate in
the adult years.
Positive Impacts
Recent ly, there has been a greater emphasis on a
range of positi ve outcomes for all family mem­
bers of individuals with disabilities, including
siblings (Dykens, 2005). Many young people
acknowledge that they have benefited from
having a sibling with a disability (Eisenberg
et al., 1998; Kaminsky & Dewey, 2001; Pit-ten
Cate & Loots, 2000; Roeyers & Mycke, [995;
Future Directions 611
Van Riper, 2&0). They have credited their
siblings with helping them gain virtues such
as patience, tolerance, benevolence, and appre­
ciation of health and family (Eisenberg et aI.,
1998; Van Riper, 2000). In Grossman's (1972)
landmark study, over half of the college-aged
men and women interviewed about hav­
ing a sibling with an intellectual disability
demonstrated increased levels of altruism, ide­
alism, and tolerance. Furthermore, in a survey
of adult siblings of persons with intellectual
disabilities, the vast majority described their
experiences as "mostly positive" and noted
the valuable lessons of compassion, tolerance,
respect for differences, and patience that they
had learned, despite their reflections on inter­
personal turmoil during the adolescent period
(Krauss et aI., 1996).
Finally, there is some suggestion that the
presence of a sibling with a disability can pro­
foundly shape individuals' identity formation.
There are a number of anecdotal reports (e.g.,
McHugh, 1999; Merrell, 1995), as well as sev­
eral empirical studies (Burton & Parks, 1991;
Cleveland & Miller, 1977), that suggest that
having a sibling with a disability has played a
role in shaping people's lives, with particular
regard to choosing career paths in the helping
professions. [n a phenomenological case study,
a 39-year-old woman with a brother with
Down syndrome considered herself a lifelong
"surrogate mother" to her brother and chose to
enter the fIeld of special education as a direct
result of growing up with a sibling with a dis­
ability (Flaton, 2006).
FUTURE DIRECTIONS
The years since our last chapter in the
, Handbook of Adole~cent Psychology (Hauser­
Cram & Krauss, 2(04) are noteworthy for
the beginning of the inclusion of the study of
adolescents with developmental disabilities
and their families into a more comprehensive
understanding of development. The inclusion
is partially a result of increased work on the
genetic origins of some disabilities, such as
Down syndrome and Williams syndrome, and
the role of gene-environment interactions in
human behavior. The inclusion is also a result of
researchers discovering that theories applied to
those with typical development, such as devel­
opmental systems theory, hold much promise
for the study of those with developmental dis­
abilities. Core aspects of development, sucn as
agency, identity, and connectedness to peers,
also appear to be assets for those with devel­
opmental disabilities. Thus, we can derive a
deeper understanding of the development of
such adolescents through the valuable models
applied to the study of typical adolescents.
Despite such promising movement in the
fIeld more generally, and the impact of federal
legislation on the rights of adolescents with
disabilities which has provided more norma­
tive opportunities in education, employment,
and social interaction, one approach that is
notably absent from research on adolescents
with developmental disabilities is the model
of positive youth development (PYD) (Lerner,
2005). This "strength-based approach"
(Lerner, 2005) stands in sharp contrast to more
traditional paradigms of adolescent develop­
ment that view adolescents in general as a
group at risk for a variety of maladaptive and!
or dangerous behaviors and outcomes (e.g.,
substance abuse, delinquency, depression).
Similarly, this perspective is distinctly differ­
ent from one that assumes psychopathology
based on developmental disability. Predicated
on the notion that youth are a resource to be
developed, PYD maintains that within each
adolescent is the potential for successful,
healthy development across five domains:
competence, confIdence, connection, charac­
ter, and caring (Lerner, 2005). This is likely
to be an effective frame work within which to
consider the developmental assets of adoles­
cents with disabilities and offers a cohesive and
inclusive model with principles of development
that apply to a wide range of adolescents.
[n regard to families of adolescents with
developmental disabilities, while the volume
of research is not large, there is an emergence of
several themes from this research that warrant
612 Adolescents with Developmental Disabilities and Their Families
.. additional study. Clearly, one of the major tasks
for families during their child's adolescence is
planning for the future-for the time when the
child leaves the educational system and enters
the adult services system. Given the increas­
ing variety of employment and postsecondary
educational options that are now available in
many communities, the choices families and
their adolescent have are more varied. Studies
should be conducted to elucidate ways in
which families and their adolescent make this
transition a successful one.
We also noted that the adolescent period
brings unique as well as common challenges
and stressors to families of children with devel­
opmental disabilities. Research on how fami­
lies manage their caregiving responsibilities
has increasingly focused on factors affecting
positive outcomes (e.g., maternal well-being,
parent-child relationship quality) This shift
in attention, from a deficit to a resilience per­
spective, promises to elucidate new knowledge
about the complexity of this developmental
period and to offer useful suggestions to ser­
vice providers and families regarding ways
in which family well-being can be supported.
While there now is a larger body of research
on families of adolescents with developmen­
tal disabilities than was available even 5 years
ago, more research needs to focus on this criti­
cal period in the Ii ves of adolescents and their
families.
It is almost commonplace to note that the
ethnic and racial diversity of American soci­
ety is not reflected in the samples included in
most research investigations. This situation
seriously limits the power of the research base
to guide practice for the millions of Americans
who have adolescents with developmental dis­
abilities who are not Caucasian (Ali, Fazil,
Bywaters, Wallace, & Singh, 200 I; Harry,
2002). There is a small but growing litera­
ture comparing Latino and Anglo families of
individuals with developmental disabilities
that focuses primarily on maternal impacts
(Blacher & McIntyre, 2005; Eisenhower &
Blacher, 2006; Magana & Smith, 2006). Far
more research is needed on ethnically diverse
samples across the family life span.
CONCLUSIONS
The adolescent period for individuals with
developmental disabilities remains understud­
ied but is beginning to emerge in the literature
as a critical life phase for both the individuals
themselves and for their families. The role of
the family does not diminish during this time
as developmentally typical challenges OCCur
for the adolescent who has been included in
many classroom and school activities but may
be struggling for inclusion in social networks,
employment, and postsecondary educational
opportunities.
Research can serve an important role in
articulating these struggles and their modera­
tors but also in locating ways families derive
strengths and that the adolescents themselves
engage in PYD. Finally, we contend that as
a field, we can also understand the science
of adolescent development more thoroughly
by the study of adolescents with disabilities.
It is only through the construction and test­
ing of models that apply to the full range of
human development that we will gain compre­
hensive perspectives on the development of
adolescents.
REFERENCES
Abramo\'ltch. R.. Stanhope. L.. Pepler. D.. & Corter. C. (1987). The
Influ~nce of Down's syndrome on sibling interactIOn. Jou.rnal
of Child P.\·vchology (lnd Psychiatry. 21'i. 865-879
Ali. Z .. Fazil. Q.. Bywaters. P.. Wallace. L.. & Stngh. G. (1001).
Dtsabilitj', cthnicuy and childhood: Acritlcal
fhsabiilty & Society. 16. 9~9-968.
reVt~w
of research.
American Academy of Pediatrics. American Academy of Family
Physicians. & American College of Physicians-American
Society of [ntemal Medicine. (2002). A consensus statement on
health care tran.sition for young adults with special
needs. Pedwtrics. 110. 1304-1306.
h~alth
care
Amencans WIth DlSabuilles Act of 1990. ~2 USc.!i 12101 el seq.
(Matthew Bender. 2007). DdlCll Reduction .'I.e[ of 2005. Pub.
L. No. 109-171. 120 Stat.~.
Amcncan Psychlatric ASSOCiation (2()()OJ. Diagnostlc anti \"wtislIca{
manual afmental disorders (4th ed.). Vv'ashington. DC: AuthorArndt, 1. J (2004 L Emerging adulthood: T"he ~vinding mad from
the late teens through {he {wenlie.J Oxford: Oxford UflIvdslry
Pr~ss.
Ilagenholm. A.. & Gillberg. C. (1991 \. Psychosocial effect<
011
siblings of children with autism and mental relarda[ion: A
population-bas~d study. Journal of Mencal Deficiency Research.
35.291-307.
References
•
613
Baine, 0" McDonald, L, Wilgosh, L, & MeHon, S, (1993), Slress
experienced by families of older adolescents or young adults
with severe disability, Australia alld New Zealand Journal of
Developmental Disabilities. lB. 177-188.
Chadwick. 0., Kusel, Y., Cuddy, M .• & Taylor. E (2005). Psychiatric
diagnoses and behaviour problems from childhood to early ado­
lescence in young people with severe intellectual disabilities.
Psychological Medicine. 15, 751-760.
Baltes. p, B, (1997). On the incomplete architecture of human
ontology: Selection, optimization. and compensation as foun­
dalion of developmental theory, American Psychologist. 52,
Cleveland, D. W.. & Miller, N. (1977). Altitudes and life commit­
ments of older siblings of mentally retarded adults. Mental
Retardation. 15.38-41.
366-380,
Baron-Cohen, S. (1995 I. Mindblindness: An essay on autism and
theory ofmind. Cambridge, MA: Bradford BookslMlT Press.
Bayat, M. (2007). Evidence of resilience in families of children
with autism. Journal of Intellectual Disability Research. 51,
702-714.
Begley. A. (1999). The self-perceptions of pupils with Down syn­
drome in relation to their academic competence, physical
competence and social acceptance. International Journal of
Disability. Development. and Education. 46. 515-529.
Begun. A. L (1989). Sibling relationships involving developmen·
tally disabled people. ilmerican Journal of Mental Retardation.
93.566-574.
BeHugi. U. Adolphs. R" Cassady. C, & Chiles. M. (1999).
Towards the neural basis for hypersociability genetic syndrome.
NeuroReport. 10. 1-5.
Blacher, I., & Baker, B. L (2007). Positive impact of intellectual
disability on families, AmericClnlournal on Mental Retardatioll,
1/2,33G--348.
Blacher. I" & Mcintyre. L L (2005). Syndrome specificity and
behavioural disorders in young adults with intellectual disabil­
ity: Cullural differences in family impacL Journal aflntellectual
Disability Research. 50, 184--198.
Blakemore. 5-1.. & Choudhury, S. (2006). Development of the ado­
lescent brain: [rnplications for executive function and social
cognition. Journal of Child Psychology and Psychiatry. 47.
296-312.
Collins, W. A., & Laursen, B. (2004). Parent-adolescent relation­
ships and influences. "n K M. Lerner & L Steinberg (Eds.).
Handbook ofndolescent development (PI'.. 331 .. 361). Hoboken,
NI: Iohn Wiley & Sons.
Committee on Children with Disabilities. (! 996). Sexuality educa­
tion of children and adolescents with developmental disabili­
ties. Pediatrics, 97,275-278.
Corter, C. Pepler. D., Stanhope. L. & Abramovitch. R. (1992).
Home observations of mothers and sibling dyads comprised
of Down's syndrome and nonhandicapped children. Canadian
Journal of Behavioural Science, 24. 1-13.
Cross. W. E.. Ie (2001). Encountering nigrescence. In
I. G. POfiterotto, M. Casas. L A. Suzuki, & C M. Alexander
(Ed,.), Handbook of muilicultural coufLleling (2nd cd.• Pl'.
30-44). Thousand Oaks, CA: Sage.
r
Cuskelly. M,. & Gunn, P. (1993). Maternal reports of behavior of
siblings of children with Down syndrome. American Journal
of Mental Retardation, 97, 521-529.
CU5keUy, M .. & Gunn. P. (2003). Sibling relationships of children
with Down syndrome: Perspectives of mothers. fathers, and sib­
lings, American Journal of Menml Retardation, 108. 234-244.
Dallas. E .. Stevenson, I., & McGurk. R (1993). Cerebral-palsied
children's interactions with siblings..·-II. Interactional structure.
Journal of Child Psychology and Psychiatry. 34. 649-67 L
DaVanzo. I .. & Goldscheider. E (1990). Coming home again:
Returns to the nest in young adulthood. Population Slttdies. 44.
141··255.
Block, P.. Baleazar, E E.. & Keys, C B. (2002). Race poverty and
disability: Three strikes and you're out! Or are you" Social
Policy, 33.34-38.
Davies, C. A., & Ienkins. R. (1997). 'She Ira.,; different fits to me':
How people with learning difficulties see themselves. Disability
and Society, 12,95-105.
Bottroll. V, Brown. R., Bullitis, E. Duffield. V., Grantley, I..
Kyrkou, M., & Thomley, I. (2002). Some studies involving indi­
viduals with Down syndrome and their relevance to a quality of
lIfe modeL In M. Cuskelly, A. Iobling. & S. Bucldey (Eds.). Down
syndrome across the life span (pp. 121-138) London: Whurr.
Davies, M., Udwin, 0 .. & Howl;n, P. (1998). Adults with WilliatIL5
syndrome. British Journal ofP,-ychiatry. 172.273-276.
Bowerman, C E., & Dobash, R. M. (1974). Structural variation in
inter-sibling affect. Journal of Marriage and the Family. 36,
de Ruiter, K. P.. DeUer, M. C. Verhulst, E C, & Koot, H. M.
(2007). Developmental course of psychopathology in youths
wilir and ",thout intellectual dISabilities. Journal of Child
Psychology atui Psychiatry. 48.498-507.
48·54.
Brandtstadtcr. L (1998). Action per>pectives on human develop·
ment In W. Damon (Series Ed.) & R M. Lerner (VoL Ed.),
Handbook of ,'hiid psychology. voL I: Theoretical models of
human development (5th ed.. pp. 807·8631. New York: 10hn
Wiley & Sons.
Bristol. !'vi. M. (1984). Family resources and successful adaptation
to autistic children. (n E.5choplcr & G, B. Mesibov (Eds.).
Issues in autism, vol. III: The effects of autism on the family
(pp. 289-310). New York: Plenum Press.
Bristol. M. M .• & Schopler. E. (1983). Stress and coping in fami­
lies of auristic adolescents. In E. Schopler & G. B. Mesibov
(Eds.), Autism in adolescents and adults (pp. 251--278). New
York Plenum Press, •
Bronfenbrenner, U. (1979), The ecology of human development.
Cambridge. MA: Ha"ard University Press.
Buhrmesrer. 0 .. & Furman, W. (1990) Perceptions of sibling rela­
tiooships during middle childhood and adolescence. Child
Oe,·e/opmem. 61,1387-1398­
Runon. S. L. & Parks. A. L (1991). The self·eSteem.locus of con·
trol, and career asptra[ions of college-aged siblings of lndividu­
als with disability. Social Work Research. 18. 178-185.
Carrer. E. & McGoldrick. M. (1980) Tire family life cycle and
family therapy: An overview. In E. A. Carter & M. McGoldrick
(Eds.), The famil)' life cycle: A framework for family therapy
(pp. 3-201. New York: Gardner Press.
.
DeMyer. M. K. & Goldberg, P. (1983). Family needs of lire autistic
adolescenl In E. Schopler & G. B. Mesibov (Eds.). i\utism in
adolescents and adults (pp. 225-2501. New York: Plenum Press.
Developmental Disabilities Assistance and Bill of Rights Act
Amendments of 2000. 42 U.S.CS § 12101 et seq. (Matthew
Bender. 2007).
Dtxan. R. M., & Reddacliff. C. A. (2001). family contribution to
the vocational lives of vocationally compe[ent young adults
with intellectual disabIlities. Imemarional Journal of Disability,
Development mui Educalion, 4B, 193-206.
Dunsford, C (2007). Spelling love with an X: ,1 mother. a son, and
the gene that binds them. Boston: Beacon Press.
Dunn. I. (2002). Sibling relationships [n C. R lIart (Ed.), Blackweil
ha,uibook of childh.ood social de.-eloprnenr (Pl'. 223-2371­
Malden, MA' Blackwell
Duvall. E (1957). Family dec·elop",,,nr. Philadelphia: 1. B. Lippincott.
Dykens. E. M. (2005). lIappin"""
strength,$:
Outcom~s
well-being, and cilaracter
for families and sibhngs of persons \Nith
mental retardation. American Journal on ~fen{al Retardation,
43.360--364.
Dyk"ns. E. M. (2006). Toward a posirive psychology of mental retar·
dalion. American Journal of Orrhopsychiat'l; 76, 185-193.
Education of AU Handicapped Children Act of 1975. Pub. L No.
94-142,89 StaL 773.
Einfeld. S. L. & Tonge, B. 1. (1996) Population prevalence of
psychopathology in children and adolescents with inreHecrual
614 Adolescents with Developmental Disabilities and Their Families
.. disability. H: Epidemiological tlndings. Journal of Intellectual
Disability Research, 40, 99-109.
Eisenberg, L, Baker, B. L, & Blacher, J (1998). Siblings of chil·
dren with mental retardation living al home or in residential
placement. Journal of Child Psychology and PIychiatry and
Allied Disciplines, 39, 355-363.
Eisenhower, A., & Blacher, J. (2006). Mothers of young adults with
intellectual disability: Multiple roles, ethnicity, and well-being.
Journal of Intellectual Disability Research, 50, 905-916.
Emerson. E. (2003). Mothers of children and adolescents with
intellectual disabilities: Social and economic situation. men­
tal health status and self-assessed social and psychological
impact of child's difficulties. Journal of Intellectual Disability
Research, 47, 385-399.
Grossman, F. K. (1972). Brothers and sisters of retarded children:
An exploratory study. Syracuse, NY: Syracuse University
Press.
Hannah, M. E., & Midlarsky, E. (2005). Helping by siblings of
children with mental retardation. A.merican Journal on Mental
Retardation. I/O, 87-99.
Harris, S. L, Glasberg, B., & Delmoli,lo, L. (1998). Families and
the developmentally disabled adolesc~nt. In U. B. VanHassert
& M. Hereson (Eds.). Handbook of psychological treatment
problems for children and adolescents (pp. 519-548). Mahwah,
NJ: Lawrence Erlbaum.
Harry, B. (2002). Trends and issues in serving culturally diverse
families of children with disabilities. The Journal of Special
Education, 36, 132-140.
Emerson, E., Robertson, 1., & Wood, 1. (2005). Emotional and
behavioural needs of children and adolescents with intellec­
tual disabilities in an urban conurbation. JourMI of Intellectual
Disability Research, 49, 16-24.
Harter, S. (1986). Developmental processes in the construction of
self. In T D. Yawkey & 1. E. Johnson (Eds.), Integrative pro·
cesses and socialization: Early to middle childhood (pp. 45-78)_
Hillsdale, Nl: Lawrence Erlbaum.
Erikson, E. H. (1950). Childhood and society. New York W. W. Nonon.
Hartup, W. W. (1993). Adolescents and their friends. (n B. Laursen
(Ed.), Close frierrdship.l· irr adolescence (pp. 3-22). San
Francisco: Jossey-Bass.
Fidler. D. J., Hepburn, S. L .. Most, D. L Philofsky, A., & Rogers,
S. (2007). Emotional responsivity in young children with
Williams syndrome. American Journal on IHental Retardation,
112, 194-206.
Fisman. S .. Wolf, L, Ellison, D .. & Freeman, T (2000). A longi­
tudinal study of siblings of children with chronic disabilities.
Canadian Journal of Psychiatry, 45. 369-375.
FlalOn, R. A. (2006). "Who would I be without Danny?"
Phenomenological case study of an adult sibling. Mental
RelfJrdation, 44, 135-144.
Fombonne, E. (2005). The changing epidemiology of autism.
Journal of Applied Research in Intellectual DisabilitieI, 18,
281-294.
Foucault. M. (1994). TechnologLes of the self. In P. Rabinow (Ed.),
Michael Foucault ethics: Subjectivicy and Iruth. vol. I (pp. 223­
251). New York: New Press.
Fujiura, G. T.. & Braddock. D. (1992). Fiscal and demographic
trends in mental retardation secv"ices: nle emergence of the
family. In L Rowitl (Ed.). Mental relardation in the year 2000
(pp. 316-338). New York: Springer-Verlag
Furman, W., & Buhrmester, D. (1985). Children's perceptions of the
qualities of sibling relationship. Child Development. 56, 448-461.
Gardiner. K. (2006). Tran:;criptional dysregulation in Down syn­
drome: Predictions for altered protein compkK stoichiometries
and post-translational modifications. and cons~qu~nces for
kaminglbehavior genes ELK. CREB. and the estrogen gluco­
corticoid receptors. Behavior Genetics. _,6.439-453.
Gath. A. (1973). The school age Slblmgs of mongol children. British
Journal of Psychiatry, 123. 161·167
Glas;on, E. 1., Sullivan, S. G .. Hu<sam, R.. Petterson, B. A.,
Montgomery, P. D, & BLttles. A H. (2002; The changing sur­
vival profik of people with Down's syndrome: hnplicatlons for
genetic counseling. ClinicaL Genetics. 62, 390-393.
Glenn, S., & CUlUlingham, C. (2001). Evaluation of self by
young people with Down syndrome. International Journal of
Disability. Development, arrd Education. 48. 163-177.
Glidden, 1'.. M., & Zetlin, A. G. (1992). Adolescence and commu­
nity adjustment. In L ROWLll (Ed.). Mental retardatIOn in the
ymr 2000 (pp. 101-114). New York: Springer- Verlag.
Gordon, P. A., Tschopp, M. K .. & Feldman, D. (2004) Addressing
tssues of se.~ualt(y with adokscents with disabihties. Child and
Adolescent Social Work Joumal. 21, 513-527.
Grant. G .. Ramcharan, P., & Flynn. M. (2007;. Resilience m families
with children and adult members with intdkctual dlsabilities:
Tracing elements of a psycho-social model. Journal of Applied
Research in Intellectual Disabilities. 20. 563-575.
Greenberg, 1. S., Seltzer, M. M., Hong. 1.. & OrSmond. G. L (2006).
Bidirectional effects of eKpressed t!mohon and behavior prob­
lems and symptoms in adolescents and adults with autism.
American Journal of Mental Retardation. II I, 229-249.
Hastings, R. P., Beck. A .. & Hill. C. (2005). Positive contributions
made by children with an intellectual disability in the family.
Journal of Intellectual Disllbilitie.<, 9. 155-165.
Hauser·Cram, P.. & Krauss, M W. (2004). Adolescents with devel­
opmental disabihtit!s and their families. [n R. M. Lerner &
L. Steinberg (Eds.). Handbook oladoiescent development (pp.
697-719). Hoboken, NJ: John Wiley & Sons.
Hauser-Cram, P., Wartleld. ME, Shonkoff. 1. S., & Krauss, M. w.,
with Sayer, A., & Upshur. C. C. (200 I). Children with dis­
abilities: A longitudinal study of child development and parent
well-being. Monographs of the Society for Research in Child
Development. 66 (3, Serial No. 266).
Heiman, T. (2000). Quality and quantity of friendship. School
Psychology International, 21, 265-281.
Heller, T, Hsieh, K .. & Rowltl. L. (1997). Maternal and paternal
caregiving of persons wirh m~ntal retardation across [he lifes­
pan. Family Relations. 46. -107 --415.
Helff, C. M .. & Glidden. L. M. 11998). More positive or less nega­
tive? Trends in research on adjustment of families rearing chil­
dren with developmental disabilities. Mental Retardatio,~ 36,
457-464.
Helms, J. E. (1995). An update of lIelms's white and people of
color racial identity models. In 1. G. Ponterotto. J. M. Casas,
L. A. Suzuki, & c. M. Alaander (Eds.), ffandbook ofmulticul­
/Ural counseling (pp. 181-198;. Thousand Oaks, CA: Sage.
Hodapp, R. M, KaleoLL. E .. Rosner. B A .. & Dykens, E. M
(2006). Mental retardation In D. A. Wolfe & E. 1. Mash
(Eds.), BehavioraL arid emotionaL disord(,rJ in adolescentj" (pp.
383-409).New York: Guilford Pre"
Hodapp. R. M.. Ly, T M. Fidler. D. J. & Ricci. L. A. (2001). Less
stress, more rewarding: Parenting children wi(h Down syn­
drome. Parenting: SCIellce and Practice. J, 317 -337.
Holmbeck, G. N. (2002). A developmental perspective on adoles­
cent health and lIlness: An imroduction to the special issues.
Journal of Pediatric P,ychology. 27. 409--415.
Howlin, P. (2000). Outcome in adult life for more able individuals
with autism or Aspager syndrom~. Autism, 4. 63-83.
Individuals wtlh DisabLltti"s Edllcation Act of 1990, 20 USC § 1400
et seq. (Matthew Bender. 2007;
Individuals with DisabLlilLes Education Act Amendments of 1997,
Pub. L. No. 105-17. III Stat. 37.
lndividuals \vith Disabtlitit!s Education Improvement Act of 2004.
Pub. L. No. 108--U6. 118 Stat. 26c17. H.R. 1350.
Inlow, 1. K.. & ReslLfo. L. L (2004;. Molecular and comparative
genetics of mental retardatLOn. Genetics. 166. 835-881.
Jenkinson. 1. C. (1999). Factors affecting decision-making by young
adults with intellectual disabilities. American Journal on Mental
Retardation, /04. .1 20- J 29.
References 615
•
Kaminsky, L., & Dewey, D, (200 I), Sibling relationships of children
with autism. Journal of Autism and Developmental Disorders,
3/,399410.
and adults with an autism spectrum disorder: Cultural atti­
tudes towards coresidence status. American Journal of
Orthopsychiatry. 76.346-357.
Kaufman, S. Z. (1999). Retarded isn't stupid, mom. Baltimore, MD:
Paul H. Brookes.
Mantry. D., Cooper. S.-A, Smiley. E.• Morrison. 1., Allan. L.,
WIlliamson. A., et al (2007). The prevalence and incidence
of mental ill-health in adults with Down syndrome. Journal of
(ntellectaal Disability Research. 52, \... 16.
Keating, D. P. (2004). Cognitive and brain development. In
R. M. Lerner & L. Steinberg (Eds.), HlJIldbook of adolescent
deVelopment (pp. 45-84). Hoboken, Nl: John Wiley & Sons.
Keogh, B. K., Gamier, H. E., Bernheimer, L. P., & Gallimore, R.
(2000). Models of child-family interaction for children with
developmental delays: Child-driven or transactional? American
Journal on Mental Retardation. 105, 3246.
Kersh, 1. (2007). Understanding the relationship between sib­
lings when one child has developmental disability (doctoral
dissertation, Boston College, 2(07). Dissertation Abstracts
[nternational, 68, 3425.
Kersh, J .. Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006).
The contribution of marital quality to the well-being of par­
ents of children with developmental disabilities. Journal of
[ntellectual Disability Research. 50, 883-<193.
Matheson. C. Olsen, R. 1" & Weisner. T. (2007). A good friend is
hard [0 find: Friendship among adolescents with disabilities.
American Journal on Menial Retardation. 112. 319-329.
McGrew, K. S.. lohnson, D_ R.,
Factor analysis of community
for young adults with mild to
Psychoeducational Assessment,
& Bruininks, R. H. (1994).
adjnstment outcome measures
severe disabilities. Journal of
11, 55-66.
McHale, S. M., & Gamble, W C (1987). Sibling relationships
and adjustment of children with disabled brothers and sisters.
Journal afChildren in Contemporary Society. 19. 131~158.
McHale. S. M., & Gamble, W. C (1989). Sibling relationships of
children with disabled and nondisabled brothers' and sisters.
Developmental Psychology, 25, 421429.
Kim, H .. Greenberg. J. S .. Seltzer, M. M .. & Krauss, M. W. (2003).
The role of coping in maintaining the psychological well·being
of mothers of adults with mental retardation andmenral illness.
Journal of[ntellectual Disability Research, 47,3 U-327
McHale, S. M., Sloan, l., & Simeonsson, R.I. (1986). Sibling
relationships of children with autistic, mentally retarded, and
nonhandicapped brothers and sisters. Journal of Autism lind
Developmental Disorders. 16. 399-413.
Kraemer. B. R., & Blacher, 1. (200t). Transition for young adults wIth
severe mental retardation: School preparation, parent expecta·
tions. and family involvement. Mental Retardo.tion, 39. 423-435.
McHugh. M. (1999). Special siblings: Growing up with someone
",i,h a disability. New York: Hyperion.
Krauss, M. W, & Seltzer, M_ M. (1994). Taking stock: Expected
gains from a life~span developmental perspective on meo­
tal retardation. In M. M. Seltzer. M. W Krauss, & M. Janicki
(Eds.•• Life coarse perspectives on adulthood and old age (pp.
211-220). Washington, DC: American Association on Mental
Retardation.
Krauss. M. W.. & Seltzer, M.M. (200 I). Having a sibling with men­
tal retardarion. In 1. V. Lerner. R. M. Lerner, & J. Finkelstein
(Eds.). Adolescence in America: An encyclopedia (pp. 436-­
440). Sama Barbara, CA ABC-CLlO.
Krauss. M. W., Seltzer, M. M., Gordon, R., & Friedman. D. H.
(1996). Binding ties: The roles of adult siblings of persons with
mental rewdation. Mental Retardation, 34, 83-93.
Kunnen, E. S., & Bosma, H. A. (2000). Development of mean­
ing making: A dynamic systems approach. New Ideas in
Psychology. 18.57-82.
Larson, E. (1998). Reframing the meaning of disability to families:
The embrace of paradox. Social Science and Medicine, 47,
865875.
Ledlie. S. \\'. (2007). Methods of assessing health care needs. In
C. L. Betz & W. M. Nehring (Eds.), Promoting health care
transitiofts fur adolescents with special health care need3 arul
disabilities (pp. 119-135). Baltimore: Brookes.
Leffert, 1. S. & S iperstein. U. N. (2002) Social cognition: .\ key
to under;randing adaptt y" behavior in individuals with mild
mental retardation. International Revieli-' of Research in Mental
Retardation. 25. 135-181.
Lerner, R. M. (2002). Concepts <md theories of hUffllJll d"'e!opment
(3rd ed.). Mahwah, NJ: Lawrence Erlbaum.
Lerner. R. M. (2005). Promoting positive youth development:
Theoretical and empitical bases. National Research Council!
{nslittlte of MedIcine. Washington, DC: National AcademIes of
Scien~c.
LoBrein, D. D.. McPherson, M., S[icl<land. S .. & New.check, P. W.
(2005). Transition planning for youth with special health care
needs: Results from the National Survey of Children with
Special Health Care Needs. Pediatrics, //5~ 1562-1568.
Lounds, 1.. SeltLer. M. M., Greenberg, 1. S., & Shattuck. P. T
(2007). Transition and change in adolescents and young adults
with .u[ism: Longitudinal effects on maternal well·being.
American Journal on Mental Retardation. 112.401-417.
Magana. S .. & Smith, M. J. (2006). Psychological distress and
weU·being of Latina and non·Latina white mothers of youth
McNair, J., & Rusch. F. R. (1991). Parent involvement in transition
programs. Mental Retardation. 29. 93-10 I.
Merrell, S. S. (1995). The accidental bond: The power of sibling
rewtionships. New York: Times Books.
Mincham. P. E.. Appleton. I'. L.. Lawson, v., BoU, V., Jones. 1'.. &
ElIiou, C. E. (1995). Impact of functional severity on self con·
cept in young people with spina bifida. Archives of Disease in
Childhood. 73. 48~52.
Mink, I.. Nihi,., C, & Meyers, C. (l983). Taxonomy of family
life styles: I. Homes with TMR children. American Journal of
Mental Deficiency, 87, 484-497.
!l<tinuchin, P. (2002). Looking toward the horizon: Present and future
In {he study of family systems. In 1. P. McHale & w. S. Grolnick
(Eds.), Retrospect and prospect in the psychological study of
families (pp. 259-278). Mahwah, NJ: Lawrence Erlbaum.
MItchell. D. B., & Hauser-Cram. P. (2008). The well-being of moth·
ers of adolescents with developmental disabilities in relation
to medical care utilization and satisfaction wilh health care.
Research in Developmental Disabilities. 29. 97 -ll2.
Moore. K. A., Guzman. L., Hair, E., Lippman, L.. & Garrett, S.
(2004). Parent· teen relationships and imeraetions: Far more
positive than not. Child Treruis Research Briefs. Publicarion #
2()O+-25. Washington, DC: Child Trends.
Mpofu, E.. & Harley, D. A. (2006). Racial and disabihty identity:
Implications for career counseling of African Americans with
dlSilbilities. Rehabilitation Counseling Bulletin. 50. 14-23.
Nadworny, 1. W. & Haddad, C R. (2007). The special needs plan­
ning guide: [[ow to prepare for every stage of your child's life.
Baltimore: Paul H. Brookes
National Center on Secondary Education and Transition (2004).
Currenl challenges facing Ihe juture of secondary educa­
lioft and transition services for youth with disabilities if! the
United States. Retrieved January 10, 2008. from www.ncset.
orglpublieationsldiscus-'ionpaper/.
Narional Longitudinal Transition Study 2 (2007a). NLTS2 Wave 2
Student School Program Survey: Transition suppon table 183:
Post· high school primary goal for youth with rransition plan.
Retrieved December 20. 2007, from www.nlrs2.org/data_tablesl
tablesf9/npr2E4.html.
National Longitudinal Transition Study 2 (2007b). NLTS2 Wave 2
Studenr School Program Survey: Transition support table 185:
Youth with transition plan: Progress toward goals for leaving
secondary school. Retrieved December 20, 2007, from w ww.
nIB2.org/data_tables/tablesl9/npr2E4.html.
616 Adolescents with Developmental Disabilities and Their Families
No Chlld Left Behind Act of 2001, Pub. L. No.t07-1I0, 115 StaL
1425.
Olney, M, E, & Kim, A. (2001). Beyond adjustment: Integration
of cognitive disability into identity. Disability & Society, 16,
563-583.
Sajith, S, G., & Clarke. D. (2007). Melatonin and sleep d.sorders
associated with intellectual disability: A clinical review. Journal
of Inreil"ct!tul Disabilitr Research. 5 I. 2-13.
Olshansky, S, (1%2), Chronic sorrow: A response to having a men·
tally defective child, Social Casework. 43, 190-193.
Sameroff, A. L & Fiese. B. H. (2000). Transactional regulation: The
developmental ecology of early intervention. In I, P. Shonkoff &
S. I. Meisels (Eds.). Handbook of early childhood lntervencion
(2nded.. pp, 135-159). New York: Cambridge University Press.
Olson, D. H. McCubbin, H. L, Barnes, H., Larsen. A" Muxen, M., &
Wilson, M. (1984). One chansand families: A national survey.
Beverly Hills, CA: Sage,
Seal, P., & [reland. M. (2005). Addressing transition to adult health
care for adolescents with special health care needs. Pediatrics.
115. 1607-1612.
Olson, D. H., Russell, C S" & Sprenkle, D. H. (1983), Circumplex
model VI: Theoretical update. Family Process. 22. 69-83.
Schneider. L Wedgewoord, N., Llewellyn, G. & McConnell. D.
(2006). Families challenged by and accommodating to the ado­
lescent years. Joarnal of Imeilectaal Disability Research. 50.
926-936.
Orsmond, G, I.. Krauss, M, W, & Seltzer, M. M, (2004). Peer
relationships and social and recreational activities among
adolescents and adults wirb autism. lonrnal of Aurism and
Developmental Disabilicies. 34. 245-256.
Orsmond, G. L. & Seltzer, M. M. (2000). Brorbers and sisters of adults
wirb mental retardation: Gendered nature of rbe sibling relation·
ship. American Journal on Mentaly Retardation. 105.486--508.
Orsmond, G. L, Seltzer, M. M.. Greenberg. I. S.. & Krauss, M. W.
(2003). Mother-child relationship quality among adoles­
cenB and adults with autism. American Journal on Mental
Retardation. Ill. 121-[37.
Parish, S. L. (200J). Federal income payments and mental retarda­
tion: The political and economic context Mental Retardation.
41.446--459.
Parish, S. L (2006). Juggling and struggling: A preliminary work·
life srudy of mothers of adolescents who have developmental
disabilities. Mental Retardacion. 44. 393--404.
Park, C C (2001). Exiting Nirvana. Boston: Little. Brown & Co.
Pit-ten Cate. L M .. & Loots. G. M. P. (2000). Experiences of sib·
lings of children with physical disabilities: An empirical inves­
tigation. Disability and Relw.bclitalion. 22. 399-408.
Powers, L E., Gamer, T.. Valnes, B., Squire. P.. Turner, A..
Couture, T.. et al. (2007). Building a successful adult life: find­
ings from youth-directed research. exceptionality, 15, 45~56.
Reeve, D. (2002). Negotiating psycho-emotional dimensions of dis­
ability and their influence on identity constructions. Disability &
Society. 17,493-508.
Rehabilitation Act of 197J. Pub. L. No. 9J-112. 81 Stat. 355.
Reiss. I., Gibson, R" & Walker. I.. (2005). Health carelransition: Yourb
family and providers perspective;. PedlJlJries. 115. 112-120,
Restivo. 1.., Ferrari. F. Passino. E.. Sgobio, C, Bock. I.,
Oostra, B A .. et at (2005). Enriched environment promotes
behaVioral and morphological recovery in a mouse model for
the fragile X syndrome. Proceedmgs of lhe National .-'leademy
afSciences. /02, 11557~11561
Rimmer, 1. H.. Rowland. J. L, & Yarnall, K. (2007). Obesity
and secondary condltions in adolescents Wlth disabilities:
Addressing the nct!d~ of an underserved population. Journal of
Adolescent Health, 41. 21+--229.
Rivers. J. W.. & Stoneman. Z. (2003). Sibling rdanonships when a
cbild has aut,sm: Marital Slress and suppon coping. Journal oj
Autism and Developmenu,/ Disorders. 33. 383-394.
Robens, R. E., Attkisson. C C, & Rosenblatt, A. (1998). Prevalence
of'Psychoparbology among children and adolescents. American
JournalofPsychiacry. 155.715-725.
Rodgers. R. (196(). Augustl. Proposed modifications of Duvall's
family life cycle slage> Paper presented at the American
Sociological Assoctation Nleeting, New York.
Roeyers, H .. & Mycke. K. (1'l951. Siblings of a child with autism,
with mental r"tardatlon and with normal deVelopment. Child:
Care. Health and DeI·e/opment. 21. 305--319.
RO>S'ter, L, & Sharpe. D. (2001) The siblings of individuals with
mental retardation: A quantitative integration of (he literature.
Journal of Child and Family Studies. /0. 65-84.
Rutter, M. (1990;. Changing patterns of psychiatric disorders during
adolescence. tn I. Bancroft & J. M. Reinisch. (Eds.), Adolesce/1ce
and pubert}' (PI'. 114--1·15) Oxford: Oxford University Press.
Scorgie. K., & Sobsey, D. (2000). Transformational outcomes asso­
ciated with parenting children who have disabilities. Men.tal
Retardation. JIi. 195-206.
Scuccimarra, D. I .. & Speece. D. L. (1990). Employment outcomes
and social integration of students with mild handicaps: The
quality of life two years afler high school. Journlll of Learning
Disabilities. 23. 213-219.
Seligman. M. E. P. (2(}()(H. Positive psychology: An introduction.
.4merican Psychologist. 55. 5~14.
Selman. R. I.. (1980). The growth of interpersonal understanding.
New York: AcademiC Pre".
Seltzer. M. M .. Greenberg. J. $ .. Floyd. R. J, Pettee, Y.. & Hong. I.
(200 I) Li fe course Impacts of parenting a child with a d,sabil­
ity. American Journal on Mental Retardation. 106. 282·303.
Seltzer, M. M. & HeUer, T. (1997). Families and caregiving aero"
the hfe course: Research advant:cs on the influence of context.
Family Relation.s, 46. 321-323.
Sel[zer. M. M .. & Krauss. M. W. (I'l84/. Placement alternatives for
mentally retarded dllidren and (heir families. In 1. Blacher(Ed.).
Severely handicapped children and thf'ir fiunilies: Research i.n
revie'\.\-". New York: A(;adcmic Pre:;s.
Seltzer, M. M. Krauss. M. W.. Choi. S. C. & Hong. 1. (19%).
Midlife and laler life parenting of adult children with mental
retardation. In C D. Ryff & M. M. Seltzer (Ed",), l'he parental
experience at midlife. Chtcago: Umversity of Chicago Press.
Selller. M. M .. Krauss, M W. Orsmond, G. I" & Vestal, C (2001/
Families of adolescents and adults with autism: Uncharted ter­
ritory. In L M. Glidden lEd.). Internalional review of research
Oft mental remrdariOft. voL 13 (pp. 267~294). San Diego:
Academic Press.
Shattuck. P. T. & Oro"e. S D.
(2(~)7).
Issues related to the diag·
nosis and lr~atment of autism :>pectrum disorder. t\1enwl
Retardation and Den:'iopl1lerltai Disabilicies Research Reviews.
i3. 129-1J5.
Shattuck. P T. Seltler. M. M. Greenberg, 1. S.. Orsmond. G. l.
Bolt. D.. Krmg. S.. Lounds. L & Lord. C. (20071 Change 10
autism :;ymptoms anJ maladapt(\·c behaviors 10 adolescents and
adults with an autism spectrum disoruC'r. Journal o/AUliJm and
Oevelopmenral Disorders. 37. 1735-I7·P.
Shields, N.. Murdoch. A .. Loy. Y.. Dodd. K. 1.. & Taylor, N. F.
(2006). A systematic review of the self-concept of children
with cerebml palsy compared with children without disability.
Developmental Medicine and Child Neurology. 48. 151 ~ 157
Sol nit ....... & Stark. tV[11961 ! Mourning and the birth of a defective
child. The Psn:hmlnalYlic Stud, of lite Child. 16. 52.1·517.
Spector. S. G" & \olkmar. F R (.!006 L Auti::.w
S[lL'(;rlUlH ci5(Jr~
ders. In D ....... Wolfe. &. E. J Mash. (EJs.L Bcit{H'wrai and
emotional di:,orders in ildv[e)'ci!,ltJ (pp. 44--+-460). New york·
GUilford Pre".
Spenccr, 1\,[ R ()0061_ Phc::nomenology and I.!COIO':;i":'ll "rstcrn~
theory: DevelopmelH Of diverse groups. In V." Danton ()erie5
Ed 1 & R. tv! Lerner (Vol Ed.). Handbook of chilil psychol·
o~~y, vol. I: Theoretical modeh of human (le,-e[ol'meru (6th ed.,
pp. 829-893). HOboken. NJ: Iohn Wiley & Sons.
Steinberg. L (l990). Autonomy, conflict, and h,lntH>ny in the
family relationship. In S. S. Feldman &. G l{. Elliot! (Eds.;.
References 617
•
At the threshold: The developing adolescent (pp. 255-276).
Cambridge. MA: Harvard University Press.
Part B Trend Data Tables. Retrieved December 16. 2007. from
www.ideadata.orglPartBTrendDataFiles.asp.
Stoneman. Z., Brody, G. R, Davis. C. H.. & Crapps, J. '-t (1987a).
Mentally relarded children and their older siblings: Naturalistic
in-home observalions. American Journal on Mental Retardation.
U.S. Department of Health and Human Services. (2006). Annual
update of the HHS poverty guidelines. 71 Fed. Reg. 3846 (Ian.
24,2(06). Retrieved December 28, 2007, from http://aspe.hhs.
gov/povenylO6fedreg.htm.
92, 290---298.
Stoneman, Z., Brody, G. H .• Davis, C. R, & Crapps, 1. M. (l987b).
Mentally retarded children and their same-sex siblings:
Naturalistic in-horne observations. American Journal on Mental
Retardation. 92, 290---298.
Stoneman, Z., Brody, G. H., Davis, C. R, Crapps, 1. M., &
Malone, D. M.(1991l. Ascribed role relations betweerr children
with mental retardation and their younger siblings. American
Journal of Memal Retardation, 95. 537-550.
Stromme, P., & DLSeth, T. H. (2000). Prevalence of psychiatric
diagnoses in children with mental retardation: Date from a
population-baSed study. Developmental Medicine and Child
lVeurolog}: 42, 266·270.
Sturmey, P., Lindsay, W. R.• & Didden, R. (2007). Special issue:
Dual diagnosis. Journal of Applied Research in Intellectual
Disabilities. 20, 379·383.
Tantam. D. (2000). Psychological disorder in adolescents and adult;
with Asperger syndrome. Autism. 4,47-62.
Thonn, E. 1.• & [rvin, L. K. (1992). Family stress associated with
transition to adulthood of young people with severe disabtlities.
Journal of the .4ssociation for Persons with Severe Handicaps.
17, 31·39
Thorirr, E .• Yovanoff, P.. & Irvin, L (1996). Dilemmas faced by
families during their young adults' transitions to adulthood:
A brief repon. Mental Retardation, 34. 117-120.
Tunmons,l. C, Whitney-Thomas, 1.. Mcintyre, 1. P.. Butterworth, 1., &
Allen, D. (2CXl4). Managing service delivery systems and the
role of parents during their children's transitions. Journal of
Rehabilitation. 70, 19·26.
Todd, S., & Jones, S. (2005). The challenge of the middle years of
parenting a child with [Ds. Journal of Intellectual Disabilitv
Research. 49, 389--404.
Turnbull, A. P., Summers, 1. A.. & Brotherson. M. 1. 0986). Family
life cycle: Theoretical and empirical implications and future
directions for families with mentally retarded members. £n
1. J. Gallagher & P. Vietze (Eds.), Families of handicapped
persons: Research. programs. and policy issues (pp. 45--66).
Baltimore: Paul R Brookes.
Turnbull, H. R., Stowe. M. 1., Agosta. J.. Turnbull, A. P.•
Schrandt, M. S, & Muller, 1. F. (2007) Federal family dis·
ability policy: Special relevance for developmental disabilities.
Mental Retardation and Developmental Disabilities Research
Reviews. lJ. 114-120
U.S. Depanmelll of Education (ZO07.). Table I-L Children and
students served under [DEA. Pan B, by age group and Slate:
Fall 2006. Retrieved January 8. lOOK from www.id...data.org/
PanBTrendDataFiles.asp.
U.S. Department of Education. (2007b). Table 4~2. Students with
disabililies served under [DEA. Part B, in the U.S. and Oul­
lying areas who exited school, by exit reason and age: Fan
2005~2006. Retrieved January 8, 2008. from www.ideadata.
orglPanBTrendDataFiles.asp.
U.S Depanment of Education. (2007c). Tabk B2A. Children serv'ed
in the 50 stales and DC (including BIA schools) under IDEA,
Part B. Ages 6-21 by age group and disability. 1991 through
2005. numbers., percentage distributions. and prevalence ratc'i:.
U.S. Social Security Administration. (2007). Social Security Annual
Statistical Supplement 2006. Retrieved December. 28, 2007. from
www.socialsecurity.gov/policy/docs/statcomps/supplemenl.
Van Riper, M. (2000). Family variables associated with wen·being
in siblings of children with Down syndrome. Journal of Family
NurSing. 6. 267·286.
Wagner. M.• Newman. L. Cameto, R .. Levine, P., & Garza. N.
(2006). An overview of findings from wave 2 of the National
longitudinal Transition Study-2 (NLST-2) (NCSER 2007~
3(06). Men[o Park. CA: SRI InternationaL
Wakeman. S. Y.. Browder. D. M., Meier, t, & McColl, A. (2007).
The implications of No Child Left Behind for students
with developmental disabilities. Mental Retardation and
Developmental Disabilities Research Reviews. 13. 143·150.
Watson, M. W., Fischer. K. W" Andreas, 1. B" & Smith, K. W.
(2CXl4). Pathways to aggression in children and adolescents.
Harvard Educational Review. 74. 404--430.
Wehmeyer, M. L (1996). Self-determination as an educational
outcome: Why is it important to children. youtn and adults
with disabilities? In D 1. Sands & M. L Wehmeyer (I"ds.),
Self-determination acmss the life-span: tndependence and
choice for people with disabilities (pp. 17·36). Baltimore: Paul
R Brookes.
Wehmeyer, M. L. & Garner, N. W. (2003). The impact of personal
characteristics of people with intellectual and developmental
disability on self-determination and autonomous functioning"
journal of Applied Research in IntellectMI Disabilities. 16,
255-265.
Wehmeyer. M. L. & Schwartz, M. ( 1998). The relationship between
self·detennination and qualtty of life for adults with mental
retardation. Education and Training in Mental Retardation and
Developmental Disabilities. 33. 3-12.
WtkJer, L M. (1986). Family stress theory and research on famihes
of children with mental retardation. In J. J. Gallagher & P. Vierze
(Eds.), Families ofhandicapped persons: Research. programs. and
policy issues (pp. 167·1%) Baltimore: Paul H. Brookes, 571-573.
Wilgosh, L (1993). Sexual abuse of children with disabilities:
lntervention and treatment issues for parents. Developmental
Disabilities Bulletin. 21. 1·11.
Wilson, C. 1.. McGillivray. 1. A, & Zetlin. A. G. (1992). The rela·
tionsnip between altitude to disabled siblings and ratmgs of
behavioural competency. Journal of Intellectual Disability
Research. 36. 325·336
Wishan, 1. G. f20(7). Soclo-cognitive understanding: A strength
or weakness in Down's syndrome" Journal of Intellectual
DimbilllyResearch. 51, 996-1005.
Zetlin, A. G.• & Murtaugh, M. (1988). Friendship patterns of mildly
learning handicapped high school students. American Journal
on Mental Rerardation. 92, 441·457.
Zetlin, A. G., & Turner, 1. L (1985). Transition from adoleScence
to adulthood: Perspecti"es of mentally retarded individuals
and their families. American Journal of Mental Deficiency. 89.
570-579.
HANDBOOK OF
ADOLESCENT PSYCHOLOGY
THIRD EDITION
Volume 1: Individual Bases of Adolescent
Development
Jooq
Edited By
RICHARD M. LERNER LAURENCE STEINBERG @
WlLEY John Wiley & Sons, Inc.