Clinic al Ma nagement

of Adolescents with
Autism
Amit M. Deokar, MD, MPHa, Marlene B. Huff, PhD, LCSWa,
Hatim A. Omar, MDa,b,*

KEYWORDS
 Autism  Adolescents  Psychosocial  Medical  Management

COMPREHENSIVE PSYCHOSOCIAL MANAGEMENT OF AUTISM IN CHILDREN AND ADOLESCENTS

Autism spectrum disorder (ASD) is a spectrum of neurodevelopmental disorders that

includes autistic disorder and pervasive developmental disorder-not otherwise spec-
ified (PDD-NOS; eg, Asperger’s syndrome, Rett syndrome, childhood degenerative
disorder [CDD]).1 The estimated prevalence of ASD in North America and Europe is
believed to be between 2 and 6 per 1000.1,2 When compared with girls and women,
men and boys are four times more likely to have autism.2
For the purposes of this work, the psychosocial domain as it relates to adolescents
with autism includes the growth, change, stability, and diversity of human emotions
and affects, personality traits, self- and social awareness and identity, and the ability
to create and maintain positive relationships with others. ‘‘Success’’ is defined when
psychosocial, behavioral, educational, and medical interventions work together so
that the adolescent achieves a maximum level of functioning. This work provides
the reader with an overview of the major psychosocial issues related to adolescents
with autism. This discussion is followed by an interjection of medications that may
be useful in maximizing the functioning of adolescents with autism.
In addition to the core characteristics of autism, which involve impairment in
language development and reciprocal social interactions, delayed or stereotyped
communication, and restricted or repetitive behaviors and interests, other behavioral
problems are often experienced by these children and adolescents.3–5 This list
includes but is not limited to self-injurious behavior, anxiety and depression, mental
retardation, attention deficit, seizures, altered sensory perception, and insomnia.6,7
The impact of autism on our society and the family that is involved in the care of the
individual is enormous.8

a
Division of Adolescent Medicine, Department of Pediatrics, University of Kentucky, Lexington,
KY 40536, USA
b
Pediatrics and Obstetrics\Gynecology, University of Kentucky, Lexington, KY 40536, USA
* Corresponding author. Division of Adolescent Medicine, Department of Pediatrics, Kentucky
Clinic, University of Kentucky, Lexington, KY 40536.
E-mail address: haomar2@email.uky.edu (H.A. Omar).

Pediatr Clin N Am 55 (2008) 1147–1157

doi:10.1016/j.pcl.2008.07.006 pediatric.theclinics.com
0031-3955/08/$ – see front matter ª 2008 Elsevier Inc. All rights reserved.
1148 Deokar et al

Although all adolescents who have autism are identified as having psychosocial
problems, the conceptualization of autism has dramatically changed over the past
20 years and it is now well recognized that there is enormous variability in the expres-
sion of autism.9 Over one’s life span, an individual with an ASD is likely to display
heterogeneity of features during its development. Some individuals exhibit a decline
in skills, some may reach a plateau, and others may continue to improve their devel-
opmental skills. Regardless of the rate or stage of development, ASDs are not curable
and, regardless of their intellectual functioning, such adolescents continue to experi-
ence problems with independent living, employment, social relationships, and mental
health to some degree.10–12
Although adolescence is a crucial stage of transition that involves psychologic and
physical changes being affected by the level of psychosocial and physical impairment
present, there have been few studies that focus specifically on adolescents who have
ASD. Furthermore, the available research contains few articles that focus on the de-
velopment of evidence-based intervention programs that could ultimately lead to high-
er quality of life for children and adolescents who have autism. In a study by Fong,13
however, there were six areas of concern (primarily psychosocial) identified. These
concerns were related to (1) behavior, (2) social skills and communication, (3) family,
(4) education, (5) independence and services for the future, and (6) relationships
with the professionals working with children and adolescents that have autism. This
study illustrates that adolescence may not be a time of condition stability. In fact, there
is often an increase in adolescent aggression and associated behaviors secondary to
developmental changes occurring nearly simultaneously. It is this interface between
the biologic and the psychosocial domains of autism that leads to the adolescent
failing to develop typical social knowledge, awareness, skills, and abilities within
developmentally appropriate time frames.
Despite this lack of research on psychosocial issues related to autism, intervention
goals often include statements about the minimization of core features and associated
deficits and the maximization of functional independence and quality of life while man-
aging the family distress also frequently associated with psychosocial issues.

SOCIAL SKILLS

As previously discussed, one of the most striking features of autism is autistic regres-
sion.3 This loss of the beginning foundation for social skill development is so profound
that Laushey and Heflin14 suggested that core impairments in social behavior should
be viewed as the defining feature of autism. Although each child who has autism
exhibits varying levels of social skill, difficulties might include impaired eye contact,
few verbal initiations, and failure to develop age-appropriate friendships.15 Further-
more, children with autism may experience difficulty in generalizing learned skills to
new settings or using newly acquired skills in the presence of unknown others.16
When a child is normally achieving developmental milestones, certain joint attention
behaviors appear between 6 months and 1 year of life. This involves joint attention
between the child, the parent or caregiver, and an object or an event. This is often
called ‘‘triadic coordination.’’17 This may involve gaze, pointing, following, and show-
ing. This joint attention behavior can be further divided into imperative and declarative
triadic exchanges, both of which are impaired in autistic individuals.17 As infants,
autistic patients have a shorter eye contact with a person compared with an object.
They also have different attention span for social and nonsocial stimuli.18 As a result,
autistic children are less exposed to social interactions that may play an important role
even as adults.
 Clinical Management of Adolescents with Autism 1149

A study published in 2001 by Thiemann and Goldstein19 showed improved social

communication skills on implementation of video feedback and use of written text
and social cues in a cohort of children between the ages of 6.6 and 12 years. Another
interventional study by Nikopoulos and Keenan20 using video modeling (of normal
development) showed improvement in social initiation and play behavior in their study
group of children between the ages of 7 and 9 years.

Repetitive and Stereotyped Behaviors and Interests

The term repetitive behavior is used to refer to a wide range of behaviors that are
undertaken, often in an odd, inappropriate, or random motion.21 Such behaviors
are observed in a range of psychologic disorders and medical conditions,16,22 with
subclinical levels reported in the typical population, most commonly in young
children.23,24 A recent study reported that although age was related to improvements
in the social and communication domains, respectively, there were fewer improve-
ments in the repetitive behavior domain.25
An investigation by Turner26 found that a variety of behavioral subcategories, includ-
ing dyskinesias; stereotypes; fixation on texture, smells, or visual displays; object
attachments; and perhaps the most serious and insidious of the symptoms, self-
injurious behaviors, are also present within the category of repetitive and stereotyped
behaviors.
Self-injurious behaviors can present in a variety of ways with different etiologies, can
be debilitating and disfiguring, and can sometimes lead to death.27 The rate of self-
injurious behaviors in persons with ASD is considerably higher than that among
children without autism.8 Even so, it should be noted that numerous adolescents
with mental health issues engage in a variety of self-injurious behaviors.
The rate at which children with autism and related disorders present with intellectual
disabilities has been estimated at greater than 70%.28 In addition, self-injurious
behaviors often accompany intellectual disability.29 Finally, other types of comorbid
psychopathology, another risk factor for self-injurious behaviors, also occur at higher
rates in children who have been diagnosed as having autism and an intellectual dis-
ability when compared with the general population.30 It should be noted that although
there is probably a biologic basis for self-injurious behavior, the present data indicate
that based on functional assessments, most of this type of self-injury seems to be
learned behaviors.31 Therefore, treatment for self-injurious behaviors often focuses
on intensive behavioral interventions.32
Although the trend is to identify the presence of autism early so that behavioral
interventions can occur as soon as possible, self-injurious behaviors tend to occur
throughout a lifetime and can even develop in later years. In addition, the life course
of the presence of self-injurious behaviors is unclear; the behaviors may become
more severe, less severe, or disappear entirely over time. In fact, a child with an
ASD may engage in self-injurious behaviors at one point but not at another. Certainly,
one of the primary psychosocial issues that require additional research is self-injurious
behaviors.

Co-Occurrence of Psychiatric Disorders

The co-occurrence of psychiatric disorders in autism has a profound effect on psycho-
social issues associated with autism.33–35 These include depression,36 obsessive-
compulsive–like behaviors,37,38 and aggressive and self-injurious behaviors for
reasons not associated with neurodevelopmental disorders.39 In addition, affective
disorders in children and adolescents who have autism first noted during childhood
have been reported,16 and the rate of mood disorder increases with age.23 It has
1150 Deokar et al

also been reported that individuals who have mental retardation have an increased
risk for psychiatric disorders.40 Because children with autism are more likely to have
mental retardation than those with PDD-NOS or Asperger’s disorder,41 this may partly
account for the increased prevalence of mood disorders.

Psychosocial Issues not Associated with Autism

Even though we know that children and adolescents are more than the autism features
that define them, there has been little research focusing on psychosocial issues
not associated with the neurodevelopmental aspects of autism. Hollander and
colleagues,42 for example, found that children and adolescents who have autism
are less likely than those who have Asperger’s disorder to have a history of family
violence and family substance abuse. In general, however, after adjusting for age,
race, gender, and income, the presence of most psychosocial characteristics was
less likely among children with autism than typical children. Specifically, children
with autism were less likely to have been physically or sexually abused, to have run
away from home, to have attempted suicide, to have used alcohol or other drugs,
to have a caregiver with a felony conviction, to have institutionalized siblings, or to
have a family history of domestic violence or substance abuse. These data, however,
should be carefully reviewed, because this large-scale, community-based, multi-site
study had large amounts of missing data that may introduce systematic bias.

Medical Management of Adolescents with Autism Spectrum Disorders

The careful administration of medication may supplement environmental and pro-
grammatic supports to maximize the quality of life for adolescents. Few studies
have specifically looked at clinical management in adolescents who have autism or
an associated ASD, however. As mentioned previously, several problematic behaviors
related to development and additional medical concerns may be carried over from
childhood to adolescence.
There are additional medical disorders that are related to autism noted in less than
10% of adolescents with autism. Some examples of these medical disorders include
tuberous sclerosis, fragile X syndrome, and phenylketonuria, among others.43 A thor-
ough medical workup to rule out these additional medical disorders is vital to ensure
a positive outcome for these adolescents. The following sections address specific
interventions often used to help solve problems that are encountered when treating
children and adolescents with autism. Although it is the physician who prescribes
the medication, it is recommended that a multidisciplinary team of professionals be
involved in the care of adolescents with autism. Although the treatment package
can vary widely and is always unique to the adolescent being treated, most profes-
sionals recommend that inclusion of structured and specialized programs be insti-
tuted early on during the child’s development in addition to the administration of
medication.2

Economic Burden
The average individual health care expenditure for children and adolescents with
autism and associated disorders has increased by approximately 20.4% between
2002 and 2004. When these costs are calculated by health care expenditure per
10,000 covered lives that are associated with other mental health conditions in individ-
uals younger than 17 years of age, the change is an overwhelming 142%.44 As autism
is becoming more prevalent, it is having a negative impact on the existing health care
infrastructure in the United States. The integration of services, such as special educa-
tion, residential treatment, and the traditional health care setting, is becoming
 Clinical Management of Adolescents with Autism 1151

increasingly crucial. Therefore, as a clinician in the health care system, one needs to
understand and use the cost-effective approach in taking care of adolescents with
autism and yet, at the same time, providing the necessary services. In addition to
the vital involvement of the parent(s) or the caregiver, other professionals, such as
health care providers, psychologists or behavioral therapists, social workers, school
teachers or special education teachers, speech and language therapists, occupa-
tional therapists, and counselors, must also become part of the multidisciplinary treat-
ment team.

FEDERAL AND STATE SERVICES

Primary care and subspecialty providers should be aware of educational programs

that may be available in their community and recommend to parents the inclusion
of the adolescent in such programs. The Individuals with Disabilities Education Act
(IDEA) is a federal program that allows free and suitable public education for the
adolescent with autism. Public schools are legally required to offer an individualized
educational program (IEP) for every special needs student. Every state also has an
early intervention program that might be appropriate for the adolescent with autism
as well.2 Although the authors recognize that educational issues are of the utmost
importance, a discussion of these issues is warranted but beyond the scope of this
article.
The following sections address the most commonly encountered medical problems
in autism and recommended management options for the physician or medical
provider.

REPETITIVE BEHAVIOR

As discussed earlier, repetitive behaviors can be subtle or significant and are a core
symptom of autism. Some individuals may seem to be preoccupied and essentially
unable to function secondary to a repetitive behavior. Many of these behaviors have
been related to the variation of the serotonergic system in the brain. There is often a de-
mand for routine and consistency in those diagnosed with autism or another associ-
ated disorder, and any change from that may provoke distress or an upsetting
behavior.2 In earlier studies, the repetitive behavior in autism has been compared
with the similar behavior in obsessive-compulsive disorder (OCD).3 The presence of
repetitive behaviors seems to decline in individuals with OCD with the use of a selective
serotonin reuptake inhibitor (SSRI), such as fluoxetine. The Food and Drug Administra-
tion (FDA) approved fluoxetine in children older than 7 years of age who have OCD or
depression.
Other studies done in adults who have autism have shown the effectiveness of flu-
voxamine (an SSRI) for repetitive behavior.45 In the same population, the administra-
tion of fluvoxamine has also shown improvement in maladaptive behavior, language,
and social relatedness.
In 2005, the first placebo-controlled crossover trial of liquid fluoxetine was con-
ducted using children who had autism aged 5 to 17 years. The study results indicated
improvement in the repetitive behavior that was measured using the Children’s Yale-
Brown Obsessive-Compulsion Scale (CY-BOCS).46
Tricyclic antidepressants (TCAs), such as clomipramine, have shown promising
results by improving the repetitive behavior in autistic adults.38 In controlled studies,
clomipramine is not better than a placebo in treating depression in children younger
than 10 years of age.45 It is also not a good option to use clomipramine in adolescents
and young adults because of serious neurologic and cardiac side effects.38 In 2006,
1152 Deokar et al

the FDA approved the atypical antipsychotic medication, risperidone, for use in chil-
dren and adolescents ranging from 5 to 17 years old. It has an antagonistic action
on the dopamine (D2) and serotonin (2A) receptors and may be used to treat behav-
ioral problems, such as aggression, irritability, temper tantrum, hyperactivity, and ste-
reotypic behavior.38,47–50 Olanzapine is sometimes used ‘‘off-label’’ for treating
aggression. All SSRIs and atypical antipsychotic agents come with a ‘‘black-box
warning’’ and serious side effects that must be explained to the parents and care-
givers of children and adolescents with autism. Yet another agent, methylphenidate,
which is a stimulant, has shown to be useful for treating hyperactivity in children
and adolescents with an ASD.51

COMMUNICATION

Impaired communication skills is another of the core features of autism. Children, ado-
lescents, and adults with an ASD have a wide variation of communication capability.
These include primarily nonverbal body language, babbling, echolalia, nonmeaningful
words or sentences, and sign language. Adolescents who are diagnosed with high-
functioning autism or Asperger’s disorder may have relatively adequate communica-
tion skills.
Early, systematic, and intense interventions have proved to be effective ways of
helping autistic children and adolescents develop their language skills.52 Many reports
suggest a strong correlation of early language development skills to adaptive and
social skills in later life. Nevertheless, approximately 50% of autistic children and
adolescents, despite receiving early language interventions, do not have a primary
spoken language. In fact, many do not have the ability to have joint attention behavior,
a core component of communication.
A recent emphasis has been to teach adolescents who have autism nonverbal social
communication skills that are helpful for joint attention and future language develop-
ment,53 but this body of research currently has conflicting results. A synchronous
and nondemanding type of verbal communication is nonstressful to the children and
adolescents and is valuable in future language outcomes and attention or ability to
focus, especially in the adolescent years.52 Another key technique often used to
improve language skills is employing parent-implemented reciprocal training. This ap-
proach has been shown to be more useful when compared with therapist-implemented
reciprocal training because of greater generalization and maintenance by the primary
caregiver.53 Other successful techniques described in the literature include (1) linguistic
mapping (uncoding of child-parent communication), (2) object play, and (3) symbolic
play. Applied behavior analysis (ABA) is considered to be quite effective in reducing
the inappropriate behavior and having a positive impact on communication skills,
learning abilities, and social behavior.2

INSOMNIA

Children and adolescents with autism and other PDD-NOS are often reported by their
parents and caregivers to have chronic insomnia. Behavioral therapy is shown to have
a low success rate in the resolution of insomnia.54 Medications and having a sleep
hygiene routine are effective in treating insomnia. Melatonin in doses ranging from
0.75 to 6.0 mg have been used in a cohort of autistic children and adolescents with
positive results.55 Clonidine is often used to decrease hyperactivity, impulsivity, and
inattention; as a side effect, it causes drowsiness and somnolence that may decrease
insomnia in autistic children and adolescents.56
 Clinical Management of Adolescents with Autism 1153

MENTAL RETARDATION AND SEIZURES

There are other comorbid conditions that may often coexist with autism. It is estimated
that approximately 70% of autistic children have mental retardation.57 Seizures of
all patterns are present in autistic children, peaking in early childhood and adoles-
cence.56 It is estimated that approximately one in four autistic children develops
seizures.2 The cumulative prevalence of seizures in autism during adulthood is up to
30%. Certain antiepileptic drugs (AEDs) may have beneficial effects and actually result
in increased positive mood aside from treating the seizures. For example, divalproex
sodium can help to stabilize the mood and decrease the impulsivity and aggression.45
Further controlled studies are needed in this area to determine the effectiveness of the
available AEDs in autism.
Other important issues that a medical professional should consider in the holistic
treatment of adolescents with autism follow.

SENSORY ISSUES

Approximately 70% of adolescents with autism have sensory and perceptual problems
of varying degrees. In the same autistic adolescent individual, hyporesponsive or hy-
perresponsive patterns may be seen in response to various stimuli. Some adolescents
are highly sensitive to noise, touch, or even vibrations, whereas others seem immune to
pain even when they engage in self-injurious behavior. Because of altered perceptions,
this often leads to maladaptation to the environment unless techniques, such as touch
input, are used with the parent and child. Higher functioning adolescents with autism
may show normal responses to various stimuli, including some sensory types.58

DIETARY INTERVENTION

Some children and adolescents with autism may require special diets. The need for
such dietary interventions is based on certain beliefs, such as food allergies or lack of
an important mineral or vitamin that potentially causes core autistic symptoms. Some
parents are currently advocating a casein- and gluten-free diet for their autistic children,
whereas some researchers have suggested adding vitamin B6 and magnesium in the
diet.59 Secretin (a peptide hormone) has been used in clinical trials, and its effect was
found to be clinically insignificant and comparable to a placebo (National Institutes of
Health, 2008, no. 37). Some unreliable reports have suggested improvement in
language, sleep, eye contact, and alertness with the use of secretin, however.2,60

ETHICAL ISSUES

Health care decision making can be quite complex when considering a significant
disability. For example, adolescent girls with severe cognitive disability or autism
may have menstrual dysphoric disorder with a heightened potential for self-injurious
behavior. Depression may increase the medical complexity of such a case, and health
care providers often fail to notice such cases because of lack of dependable assess-
ment tools and the individual’s cognitive and language impairment. Treatment modal-
ities may vary depending on such factors as parent or guardian wishes, medicolegal
and ethical considerations, and, above all, the patient’s best interest.61
Other pharmacologic developments include the following:
 D-cycloserine (a partial N-methyl-D-aspartate [NMDA] antagonist) was pilot
tested in an 8-week single-blind study in 10 autistic subjects and showed signif-
icant improvement in social withdrawal.62
1154 Deokar et al

 Pioglitazone (thiazolidinediones, peroxisome agonists, and used in type 2 diabe-

tes) exerts an anti-inflammatory response, including on the brain glial cells. It was
tried in 25 children and adolescents (3–17 years of age) for 3 to 4 months. Clinical
improvement in behavioral symptoms (eg, irritability, hyperactivity) was noted.63
 Hyperbaric oxygen therapy (HBOT) has been shown to improve speech, motiva-
tion, and cognitive awareness. HBOT reduces the effects of oxidative stress and
inflammation, as evidenced by a decrease in C-reactive protein (CRP) and oxida-
tive stress markers, such as plasma-oxidized glutathione.

SUMMARY

The evaluation and treatment of autism and associated disorders is a complex and
often long-term relationship between the medical or mental health provider, the child
or adolescent, the family, and various professional program staff. Although many effec-
tive interventions focus on behavior, the careful administration of medication may be
helpful for adolescents who are experiencing dramatic physical, hormonal, and behav-
ioral changes. Specific recommendations can be made to medical and mental health
professionals about the clinical management of children and adolescents with an ASD.
The features of ASDs are different from those of other psychiatric disorders that
typically begin in childhood, and there is tremendous variability in the child’s or ado-
lescent’s ability to function. This variability means that a comprehensive assessment is
critical to the accurate diagnosis and treatment of ASDs. Furthermore, the degree to
which the deficits associated with an ASD affect and are affected by other areas of
development may be greater than that found in other childhood disorders, necessitat-
ing input from various professionals to provide comprehensive care.

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