Pervasive Developmental Disorders: Autism
Lisa A. Ruble, PhD, and Shannon Brown, PhD
Every primary care physician can expect to treat an indi-
ETIOLOGIC THEORIES OF AUTISM
vidual with autism.1 Until recently autism was consid-ered a rare disorder2 resulting from the child’s reaction
The etiology of autism remains unknown. Researchers
to parental rejection.3,4 Today autism is recognized as a
have focused on several primary target areas, including
relatively widespread disability5 reported twice as fre-
genetic, neuropathologic, and environmental sources.
quently as it was in the past,6 and it is more prevalent
Possible metabolic15 and immunologic16 causes have
than childhood cancer, diabetes, spina bifida, and Down
also been investigated. Although there is agreement that
syndrome.5 Autism is now known to be of neuro-
autism results from an alteration of normal brain devel-
biologic origin,7 and its presence in families is not
opment, to date, no single cause for autism has been
related to parenting style, social economic status, race,
identified. A consensus is building that autism results
from multiple etiologies1,10 and is likely present before
Although they require the same medical care as other
children, children with autism pose unique challenges
The possibility that some individuals are genetically
for primary care providers (PCPs).1,10 First, as one of the
predisposed to developing autism has received much
most complex neurodevelopmental disorders, autism is
attention. Genetic researchers have reported monozy-
a diagnosis based on behaviors instead of medical tests.
gotic concordance rates of 60% for autism and 92% for
The lack of a biologic marker for autism requires the
the broader symptoms of social and communication dif-
diagnostic clinician to have specialized skills and expe-
ficulties. The concordance of autism in dizygotic twins is
rience in identifying the behavioral phenotype.11 PCPs,
0%, yet 10 to 30% of dizygotic twins develop the broader
who are often the first health care providers to learn
spectrum of symptoms.17 Research suggests that several
about parental concerns,12, 13 are in a critical position to
genes, perhaps as few as 318 and possibly more than 15,19
screen for autism in very young children and make
contribute to the behavioral features in autism. A sibling
appropriate referrals for a comprehensive diagnostic
occurrence rate from about 2 to 7% has been reported,
assessment.14 A second challenge is that there is no
as well as an increased risk of associated genetic and
known single cause or cure for autism. Confronted with
chromosomal abnormalities.6,20 Autism, for example,
this lack of information, parents are often vulnerable to
has been linked with fragile X syndrome21,22 and tuber-
unproven and invalidated treatments. As a result, physi-
ous sclerosis.23,24 Genetic abnormalities on all but two
cians have to address many questions regarding therapy
chromosomes (chromosomes 14 and 20) have been
options and management. Health care providers must
associated with autism.25 Because of these associated
be equipped with enough knowledge to assist parents
conditions and family studies, genetic as well as other
in treatment decisions. Today, it is necessary that all
sources of etiology continue to be investigated.
physicians be aware of the early features of autism, know
Evidence for autism-associated neuropathology
when to refer a young child for a comprehensive diag-
comes from several sources. First, many individuals
nostic assessment, and have enough information on the
with autism have additional neurologic conditions.
disability to be able to provide ongoing advice to parents
Mental retardation occurs in about 65 to 85%26 and
and care givers. In order to help address these chal-
epilepsy in about 30% of individuals with autism.27
lenges, this chapter will review current information on
Second, neuroimaging and autopsy studies suggest an
etiology and recommended practices for screening,
alteration of normal brain development during the pre-
diagnosis, and treatment in autism. Table 16–1 provides
natal period. Reduced size and number of Purkinje cells
a list of resources to help clarify the recommendations.
and cerebellar hypoplasia, as well as reduced neuronal
Table 16–1 Recommended Resources for Health Care Providers
This article provides a general overview of autism and related
Autism questions and answers for health care providers9
research at the National Institute of Child Health and Human Development.
These reports summarize findings from a multidisciplinary NIH
The screening and diagnosis of autism spectrum disorders5
Consensus Panel on screening and diagnosis.
Practice parameter: screening and diagnosis of autism59
Developed specifically for pediatricians, this policy statement
Technical report: the pediatrician’s role in the diagnosis and
summarizes information on diagnosis and management of autism
management of autistic spectrum disorder in children1,10
including conventional and alternative treatments.
This report, at the request of the US Department of Education’s
Office of Special Education Programs, was sponsored by the National Research Council and summarizes the state of the scientific evidence of the effects of early educational interventionon young children with autism spectrum disorders .
This Web site provides practical information that can be
Autism Society of America, online at <www.autism-society.org>
printed and shared with families regarding many topics related to ASDs.
This policy statement describes the federal, state, and local
The pediatrician’s role in the development and implementation
requirements of special educational and early intervention
of an Individual Education Plan (IEP) and/or an Individual
services, the pediatrician’s role in collaborating with early
intervention and educational professionals and parent support groups.
ASD = autism spectrum disorder; NIH = National Institutes of Health.
cell size, truncated dendritic growth, and increased cell
are unknown, it is hypothesized that these disorders
packing in limbic structures have been reported.28,29
may play a causal role. Research on the correction of the
These findings, however, are not specific to autism.
underlying metabolic dysfunction (through diet, drugs,
For many years, researchers have studied possible
or nutritional supplements), however, has not demon-
environmental causes of autism. In the 1970s, a corre-
strated a reversal of autism.15 Similarly, no direct evi-
lation between congenital rubella and autism was
dence has provided a causative link between immune
reported.30 Recently, thalidomide exposure has been
system abnormalities and pathogenesis of autism.35
linked to autism,31 implicating its onset around the timeof neural tube closure. A few researchers exploring themeasles-mumps-rubella (MMR) vaccine reported a
PREVALENCE OF AUTISM
causal association with autism.32 No conclusive scien-tific evidence, however, supports this hypothesis or any
The prevalence of autism has recently caught the inter-
hypothesis of a combination of vaccines as a cause of
est of researchers, service providers, and parents alike.
autism.9,33 In addition, no evidence exists for a link
Public agencies such as the US Department of Educa-
between autism and the type of mercury containing
tion have identified autism as the largest growing
preservative (ie, thimerisol) used in the manufacture of
low-incidence disability reported by public school per-
vaccines. The Institute of Medicine and the American
sonnel.36 The California Department of Health and
Academy of Pediatrics (AAP) have published indepen-
Human Services reported a 273% increase in the num-
dent reviews of the scientific evidence of the relation-
ber of children with autism seeking services from 1987
ship between vaccines and autism; both reports identify
to 1998.37 These alarming statistics have led some to
imply an autism epidemic.38 With careful examination,
Although the numbers of children with autism who
however, evidence suggests otherwise. In a careful study
have possible metabolic15 or immunologic disorders16
evaluating the prevalence of autism using a standard-
Pervasive Developmental Disorders: Autism
ized autism diagnostic instrument,39 Chakrabarti and
DIAGNOSTIC CRITERIA OF PDD
Fombonne6,40 calculated a current prevalence rate of62.6 per 10,000 for all pervasive developmental disor-
The Diagnostic and Statistical Manual of Mental Disorders,
ders (PDDs), a group of disabilities that includes four
Fourth Edition, Text Revision (DSM-IV-TR)41 describes
other categories besides autism. This number is higher
the diagnostic criteria for the PDDs. Each of the PDDs
than previous estimates, but analysis of the specific diag-
shares some features. But of the five PDDs, three have the
nostic groups indicates that there was a disproportion-
most overlap with one another (ie, Autistic Disorder,
ate increase in the number of children with symptoms
Asperger syndrome, or PDD-NOS). Many researchers
milder than those typically seen in classic autism.
believe that the shared social impairments are the hall-
Subgroup analysis determined that 16.8 per 10,000 pre-
mark features of the PDDs that distinguish them from
school children had autism, 8.4 per 10,000 had Asperger
other childhood disorders.42–44 Also, instead of the term
syndrome, 36.1 per 10,000 had Pervasive Develop-
PDD, researchers are advocating for the term Autism
mental Disorder-Not Otherwise Specified (PDD-NOS),
Spectrum Disorder (ASD) to emphasize both the shared
1 per 10,000 had Rett’s disorder, and 1 per 10,000 had
overlap and lack of clear distinctions between the PDDs
Childhood Disintegrative Disorder. Analysis of the age
and the fact that these children often benefit from the
of referral indicated that children with autism received
same services.45 Next, the detailed DSM-IV-TR criteria
an earlier diagnosis than those children who were later
for each PDD are presented. Table 16–2 provides a brief
diagnosed with Asperger syndrome or PDD-NOS. The
children with autism also had more cognitive and lan-guage delays. Overall, Fombonne40 reached the conclu-
Diagnostic Criteria of Autistic Disorder
sion that although epidemiologic studies of autism areflawed with methodologic limitations, data on increased
Although autism becomes evident within the first 3
numbers of children with autism are more likely to be
years of life, it often remains undiagnosed until 4 years
reflecting (1) a usage of a broader definition of autism,
of age. The relatively late diagnosis is due to many fac-
(2) changes in diagnostic criteria over time, and (3) an
tors. The identification of autism requires specific
improved recognition of autism, especially in children
expertise and knowledge. Diagnosticians must have a
solid understanding of normal social and communica-
Table 16–2 Diagnostic Criteria for Pervasive Developmental Disorders
*One of these must be present. †Two of these must be present. Adapted from Ruble L, Stone W.73
tion development in order to determine if a child is
in at least one of the following areas prior to 3 years of
experiencing difficulties as a result of a developmental
age: (1) social interaction, (2) language as used in social
delay or autism. For very young children under the age
communication, and (3) symbolic or imaginative play. In
of 2 years, establishing the consistency between a child’s
addition, Rett’s Disorder and Childhood Disintegrative
developmental and mental ages and social and com-
Disorder, to be described later, must be ruled out.
munication skills may prove difficult, especially if thechild has low nonverbal skills.45 Another issue is that
Diagnostic Criteria of Asperger’s Disorder
children with autism can be notably different from oneanother. Two children with autism can meet different
The next most closely related PDD is Asperger syn-
combinations of the DSM-IV-TR diagnostic criteria. In
drome. Debate continues among researchers about
addition, the same child with autism may meet a certain
whether Asperger syndrome can be distinguished from
combination of criteria when younger but a different
high-functioning autism (children with autism who do
combination when older.46 Despite these challenges,
not have cognitive impairment).49,50 In order to meet
research indicates that children can be identified reli-
criteria for Asperger syndrome, the child must demon-
strate impairments in two of the areas previously
The first component of the definition of autism,
described for Autistic Disorder: (1) social interaction
social impairment, is more challenging to detect because
and (2) restricted, repetitive patterns of behavior, inter-
it represents a relative absence of behavior. Autism is
ests, and activities. The child must not demonstrate any
distinguished by significant impairment in at least two
clinically significant general delay in language and
of the following four areas: (1) coordinated use of non-
should use single words by age 2 and communicative
verbal behaviors to regulate social and communicative
phrases by age 3. In addition, the child also must not
interactions (eg, eye-to-eye gaze, gestures, facial expres-
exhibit any significant delay in cognitive development or
sions); (2) development of peer relationships appropri-
adaptive behavior (except for social interaction) and
ate to the child’s developmental level; (3) seeking to
show curiosity about the environment in childhood.41
share enjoyment, interests, and achievements with oth-ers; and (4) establishing social and emotional reciproc-ity (eg, engaging in social play for older children or
DIAGNOSTIC CRITERIA OF PDD-NOS
The communication disorder, the second component
The next ASD that is most closely associated with
of autism, is featured by significant impairment in at least
autism and Asperger syndrome is PDD-NOS. PDD-
one of the four areas: (1) problems in development of
NOS is diagnosed when a child does not meet criteria
spoken language (also accompanied by a lack of com-
for autism because of late age at onset, atypical symp-
pensation through other modes of communication like
tomatology, or subthreshold symptomatology. Children
gestures); (2) inability to initiate or sustain a conversa-
with PDD-NOS do demonstrate the (1) social impair-
tion with others in individuals with spoken language; (3)
ments and either (2) communication impairments or
the presence of stereotyped and repetitive use of language
(3) restricted, repetitive, patterns of behavior, interests,
or idiosyncratic use of language (eg, repetition of words
or phrases without regard to meaning); and (4) a lack ofvaried, spontaneous make-believe play or social imitative
Diagnostic Criteria of Rett’s Disorder
play consistent with the child’s developmental level.41
To meet criteria under the third area of impairment
Rett’s disorder is an X-linked neurodevelopmental dis-
is to demonstrate restricted, repetitive, and stereotyped
order with an identified mutation in the gene MECP2.51
patterns of behavior interests and activities in at least
Rett’s disorder is unique from the previously described
one of the following four areas: (1) preoccupation with
PDDs for several reasons. Occurring most often in
one or more stereotyped and restricted patterns of
females, but also present in males and resulting in mul-
interest that is abnormal in intensity or focus; (2) inflex-
tiple and specific deficits following a period of normal
ible adherence to specific nonfunctional routines or rit-
development after birth, children with Rett’s demon-
uals; (3) stereotyped and repetitive motor mannerisms;
strate all of the following: (1) normal prenatal and
and (4) a persistent preoccupation with parts of objects.
perinatal development, (2) normal psychomotor devel-
In addition to meeting the criteria described above,
opment for the first 5 months after birth, and (3) normal
the child must also demonstrate abnormal functioning
head circumference at birth. After this period of normal
Pervasive Developmental Disorders: Autism
development, all of the following are observed: (1) decel-
A comprehensive evaluation that can provide both a
eration of head growth between 5 and 48 months of age,
definitive diagnosis and treatment recommendations
(2) loss of previously acquired purposeful hand skills
is best conducted by a multidisciplinary assessment
between 5 and 30 months of age with subsequent devel-
team comprised of a physician, psychologist, speech
opment of stereotyped hand movements (eg, hand
and language pathologist, occupational therapist, and
wringing or hand washing), (3) poorly coordinated gait
educational specialist.55 In order to know when to refer
or trunk movements, and (4) severely impaired expres-
a child for comprehensive evaluation, it is necessary to
sive and receptive language development accompanied
be familiar with screening tools that identify children
with possible developmental problems and instrumentsthat differentiate children with autism from those withother developmental disorders. The AAP recommends
Diagnostic Criteria of Childhood
that all physicians know and use at least one screening
Disintegrative Disorder
Childhood Disintegrative Disorder is diagnosed when achild experiences marked regression in multiple areas ofdevelopment following a period of at least 2 years of typ-
EARLY INDICATORS OF AUTISM
ical development. Age-appropriate development of ver-
IN VERY YOUNG CHILDREN
bal and nonverbal communication, social relationships,play, and adaptive behavior is observed. After the age of
The DSM-IV-TR criteria for autism may be limited for
2 years, but before the age of 10 years, the child exhibits
preschool children because very young children were
a significant loss of previously acquired skills in at least
excluded in field tests.56 Nevertheless, recognizing the
two of the following areas: expressive or receptive lan-
red flags of possible autism can lead parents in the right
guage, social skills or adaptive behavior, bowel or bladder
direction. Researchers, for example, have reported
control, play, or motor skills. Typically, acquired skills are
behaviors that distinguish very young children with
lost in almost all areas of development.41
autism from a developmentally matched sample thatinclude less frequent use of eye contact, responding toname being called, pointing, and showing behav-
IMPORTANCE OF IDENTIFYING AUTISM
iors.57,58 More formal methods of identifying autism
IN YOUNG CHILDREN
Level 1 screening, which should be conducted on a
Despite the published results demonstrating the benefi-
routine basis at all well-child visits,59 identifies children
cial effects of early intervention,52,53 many children with
who are at risk for developmental delays. A list of level
autism miss the opportunity for specialized services
1 screening instruments is available in Filipek and col-
because the average age of diagnosis is about 4 years.12,13
leagues.59 For children whose screening results are con-
Making an early diagnosis of autism is essential for care
cerning, the next step is referral to the state early
givers and children. Access to services, accurate infor-
intervention program or local school system for an
mation, and specially designed intervention programs
assessment. A level 2 evaluation is comprised of a more
are based on a diagnosis. Also, providing parents with
in-depth analysis of the developmental problems,
information helps them to become more knowledgeable
including identifying children who are at risk for
and informed consumers of services on behalf of their
autism.59 See Table 16–3 for recommended practices for
child. It also assists them in becoming organized for
advocacy efforts in local and federal arenas on policy
Today there are research-based level 1 and 2 screening
issues that affect their child and other children and adults
tools available for PCP. An effective screen must have
with disabilities, such as the identified need for better-
a balance between its (1) sensitivity, the number of
trained personnel and appropriate services.54 PCPs who
children accurately identified by the screen with the dis-
have knowledge of early symptoms of autism and listen
order, and (2) specificity, the number of children accu-
closely to parental concerns of their child’s social and
rately identified by the screen without the disorder. The
communication development are more likely to refer
Checklist for Autism in Toddlers (CHAT) is an example
parents and care givers to appropriate diagnosticians,
of a parent report and interactive tool geared toward
allowing children and families to participate in special-
18-month-olds and developed primarily for PCP to
administer at well-child visits.60 The CHAT is comprised
Table 16–3 Recommendations of Routine
two or more of the five groups of behaviors were later
diagnosed with autism at 30 months of age. Three char-
Be familiar with the signs and symptoms of autism and refer for
acteristic behaviors were reported as predictive of an
autism diagnosis: decreased pointing to share interest,joint attention, and pretend play.60 In a more extensive
Provide developmental screening at each well-child visit (see
sample of 16,000 children, the CHAT correctly identi-
Filipek and colleagues5 for descriptions of instruments)
fied 10 of 12 children with autism.61 The CHAT, how-
Refer for immediate diagnostic evaluation if
ever, may miss some children who are later diagnosed.62
By 12 months, the child is not babbling gesturing (eg, pointing,
Therefore, it is inappropriate to replace a comprehen-
sive evaluation with a screening tool because the screen-
By 16 months, the child is not using single words By 24 months, the child is not using 2-word spontaneous phrases
ing tool may be insensitive to all cases of autism. The
second screening instrument, called the M-CHAT, is a
There is any loss of language or social skills at any age
modified version of the CHAT and consists of 23 yes andno parent-report items. It is designed for all parents and
Refer for immediate formal audiologic assessment when concerns
include a speech, language, or hearing problem; periodic lead
can be completed in the waiting room. Six items that
screens should be conducted for any child with pica
related to social relatedness and communication dis-criminated children with autism from those with other
Become familiar with autism screening instruments (see Table 16–4)
ASDs.14 Information on the sensitivity and specificity of
Monitor the social, communication, play, and behavior
the M-CHAT has not yet been reported.
development of siblings of children with autism
A third instrument, the Screening Tool for Autism in
Refer child to early intervention (zero to three services for those
Two-Year-Olds (STAT),63 is an interactive assessment that
less than 36 months of age) and to school system (for children
elicits specific social and communicative behaviors from
older than 36 months of age) for specialized services
the child and is designed to discriminate children with
Become knowledgeable of the beneficial outcomes of early
autism from children with other developmental disabil-
intervention for children with autism and the wide range of
ities. The STAT consists of 12 items: two requesting, two
play, four imitation, and four directing attention items. The sensitivity and specificity of the STAT are adequate.
Be knowledgeable of the screening tools for older children who
may have subthreshold symptoms of autism and make
A fourth tool, the Pervasive Developmental Disorders
Screening Test (PDDST),64 is composed of three parts. Stage 1, the first part, is for use in pediatric settings; stage2 is designed for developmental clinics, to differentiatechildren with autism from those with other develop-
of nine parent questions and five child interaction activ-
mental disorders; and stage 3 is for clinics that specialize
ities. Five groups of behaviors are evaluated: social inter-
in autism to differentiate autism from PDD-NOS. The
est, social play, pretend play, joint attention, and pointing
sensitivity and specificity of the PDDST are not reported.
to express interest in an object or event. One study
A brief comparison of these tools and where they can be
demonstrated that 18-month-old children who lacked
accessed are available in Table 16–4. Table 16–4 Comparison of Various Autism Screening Tools Pervasive Developmental Disorders: AutismTREATMENT Table 16–5 Practical Guidelines for Promoting Interactions with Individuals with Autism During
Medical management for children with autism is the
same as for any child. Due to the social and communi-
cation difficulties, however, children with autism may
If possible, start a conversation with the child’s parents before
be more responsive to particular interaction strategies
used during an evaluation. Tables 16–5 and 16–6 pro-
Talk with parents about how their child communicates best.
vide suggestions on ways to promote positive exchanges
Also, discuss what stimuli may be most irritating or scary to
with individuals with autism during evaluations.
the child (eg,certain objects, noises, words), and what kinds of
Treatment approaches alleviate behavioral symp-
toms and increase learning and adaptive behaviors by
If a child’s behavior is likely to make talking with parents during
reversing the social and communicative impairments
a visit difficult, use the phone to take histories, discuss progress
but do not cure the child of autism. In addition, the
made since last visit, or discuss other issues before an office visit.
diagnosis of autism does not specify one treatment
Work with parents to implement a desensitization plan to your
approach, and all intervention methods should be
office/hospital, for procedures, and for equipment.
based on an individualized assessment of the child’sneeds.65 Three broad approaches to treatment have
If possible, schedule extra time for appointments for children
been pursued, including pharmacologic, educationaland behavioral, and alternative methods. Each mode of
Being touched is very unpleasant for some children with autism;
Educational and Behavioral Treatments
avoid touching them if it is not necessary. If you do need to touch a child, first tell him/her where and how you will touch
Educational and behavioral treatments are the most effi-
cacious and, therefore, the primary treatment for chil-
View the child’s behavior as one way she/he communicates
dren with ASD. It is beyond the scope of this chapter to
with you. Disruptive or aggressive behavior may be caused by
provide a detailed overview of the research on the edu-
confusion, fear, anxiety, pain, or other physical discomfort.
cational and behavioral treatment approaches in autism,
Sometimes having items available that the child might enjoy
and PCPs are advised to consult other resources.1,10,54
may redirect anxiety and promote calmness, such as squeeze balls or toys that make noises or light up.
Unlike other treatment approaches, an educationalapproach has withstood the test of time and is consid-
You may need to change the way you usually communicate with
ered the primary intervention method for autism.53
children with autism (Table 16–6).
Fortunately, as a result of federal legislation, the
Do not be in a hurry when interacting with these children. They
Individuals with Disabilities Education Act (IDEA)
may take more time than the typical child to feel comfortable
guarantees the education of all children with disabili-
with you. Also, they may need extra time to process and under-
ties, from birth through the age of 21 years.66 The
stand what you say and to respond to your requests.
Committee on Children with Disabilities of the AAP
Be kind and compassionate to parents. Nobody cares more
published a policy statement on the role of health care
providers in the development and implementation ofspecial education programming for children with dis-
abilities.67 This report explains the laws behind IDEA
Continue supporting and communicating with parents. Phone
calls can be a good way to follow up after a visit and to further
and describes components of the Individual Education
discuss issues that were not thoroughly addressed during an
Plan (IEP) and Individual Family Service Plan (IFSP)
and the medical role in the IEP and IFSP. Ensuring thatchildren with disabilities have access to services is a pri-
*Each child with autism has different characteristics and needs.
Therefore, these guidelines can serve as suggestions that should be
mary activity for every primary care physician.
Recognizing its critical role in the education and
treatment of children with autism, the US Departmentof Education’s Office of Special Education Programsrequested that the National Research Council develop a
It is helpful to share this information with parents who
committee to report on the scientific evidence regarding
have children under 8 years of age as they consider and
educational interventions for young children with autism.
evaluate their child’s educational program. Table 16–6 Communicating with Persons with Autism
undesirable behaviors. No single teaching method hasbeen reported as being more effective than any other
Keep sentences as short and simple as possible. People with
autism may process and comprehend only a portion of what
approach; in fact, all techniques have demonstrated
you say or understand only nouns and verbs.
effectiveness, and it is likely that a multicomponent
Example: When you say, “Please stay in the room and do not
approach is most effective.73 Regardless of any selected
go into the hallway,” the child may process only the end of your
approach, it is essential to first generate treatment goals
sentence and think you said, “Go into the hallway.”
based on the results of individualized assessments of the
Provide simple, clear, and concise directions.
child’s various areas of development and make adjust-
Example: Instead of gesturing at the examination table and
ments of the treatment goals and methods based on the
saying, “Time for me to look at your belly,” tell the child what
you want him to do and make one request at a time. You couldstart with “Sit on table,” while gesturing toward the table. Oncethe child is on the table, say “Lay down.” When the child is
Pharmacologic Treatments
laying, say “Doctor will pull up shirt.” Then “Doctor willtouch belly.”
Although pharmacologic treatments have not receivedthe same research attention as behavioral or educational
People with autism may not understand who, what, when,
where, why, and how questions. Words with multiple meanings
approaches, it is estimated that more than 50% of indi-
or meanings that are dependent on context (especially
viduals with autism are treated with some type of med-
prepositions, adjectives, and adverbs) may be confusing.
ication, including psychotropics, vitamins, anticon-vulsants, antidepressants, or stimulants.74 Parents, there-
Children with autism may need an extra 5 to 10 seconds to
fore, are likely to consult with their PCP regarding thesetreatments. Pharmacologic treatment is considered
Some children may communicate best through means other
adjunctive therapy and does not address core symptoms
than spoken word. Consider the use of visual pictures that
of autism, but rather those behaviors that interfere with
depict the sequence of events of the examination, writtenwords, gestures, and environmental cues when appropriate.
learning and daily life. Medications have been used toreduce overactivity, aggression, repetitive or compulsive
Thank children and tell them when they have done something well.
behaviors, self-injury, anxiety, or depression and improve
Example: Say, “Good job being calm” after a procedure that is
attention and sleep. Descriptions of many of the classes of
normally anxiety provoking for a child.
medications used with individuals who have autism are
Use neutral tones of voice and facial expressions when telling a
described below and in Table 16–7. Because little is
known about the effects of some of these drugs on this
Tell children what you would like them to do rather than what
population, specialists who have experience with autism
should monitor pharmacologic interventions. In addi-
Example: Say, “Put hands on lap” rather than “Do not touch
tion, before medication is considered for the treatment
of problem behavior, it is necessary that the parents and
Do not give a child a choice when the child does not have one.
care givers, with the assistance of trained educational and
Example: Do not ask “May I look in your ears?” if you intend
behavioral specialists, consider environmental modifica-
to examine his/her ears whether or not she/he gives you
tions as well.1 These types of modifications are briefly
described in the educational treatment section. Neuroleptics The neuroleptic drugs are dopamine
antagonists that specifically block D receptors. The
degree of affinity of the neuroleptics for D and other
Several types of teaching strategies have been evalu-
receptors depends on the medication, however. In addi-
ated for children with autism, and parents may consult
tion to D binding, other dopaminergic, serotonergic,
their PCP with regard to these approaches. To name a
cholinergic muscarinic, α-adrenergic, and histamine
few, these methods include structured teaching,68 inci-
receptors may be bound. Because increased motor
dental teaching,69 discrete trial training,70 pivotal
activity and stereotypic behavior, similar to that
response training,71 and functional communication
observed in people with autism, is seen with the acti-
training.72 All of these approaches fall under the frame-
vation of D receptors, neuroleptics could be expected
work of applied behavior analysis (ABA), which is com-
to reduce these behaviors. It has been demonstrated
posed of systematic and planned teaching techniques
that some children with autism and low IQ scores have
designed to increase desired behaviors and decrease
high levels of homovanillic acid, a breakdown product
Pervasive Developmental Disorders: AutismTable 16–7 Medications Used for Target Behaviors
α-Adrenergic receptor agonists (clonidine,* guanfacine*)
Anxiolytics (buspirone)β-Blocker (propranolol)Dopamine receptor blockers, atypical neuroleptics (haloperidol, thioridazine, chlorpromazine,
Opiate receptor antagonist (naltrexone†)Stimulants (methylphenidate,‡ dextroamphetamine,‡ pemoline‡) Tricyclic antidepressant (clomipramine)
α-Adrenergic receptor agonists (clonidine, guanfacine)Atypical neuroleptics (risperidone, olanzapine)
AnxiolyticsDopamine receptor blockers, atypical neuroleptics (haloperidol,* thioridazine,
chlorpromazine, pimozide, risperidone,* olanzapine)
Mood stabilizer, anticonvulsants (lithium,† valproic acid,† carbamazepine†) Noradrenergic agents (propranolol,† clonidine, guanfacine) SSRIs, tricyclic antidepressants (fluoxetine, sertraline, fluvoxamine, paroxetine,
α-Adrenergic receptor agonists (clonidine,† guanfacine)AnticonvulsantsAnxiolyticsβ-Blocker (propranolol)Dopamine receptor blockers, atypical neuroleptics (haloperidol,* thioridazine,
chlorpromazine, pimozide,* risperidone,† olanzapine)
Opiate receptor antagonsist SSRIs, tricyclic antidepressants (fluoxetine,‡ sertraline,
α-Adrenergic receptor agonists (clonidine,‡ guanfacine)
Atypical neuroleptics SSRIs, tricyclic antidepressants (fluoxetine,*sertralin,* fluvoxamine, paroxetine,*clomipramine*)
Atypical neuroleptics Mood stabilizers (lithium,† divalproex†)SSRIs,* tricyclic antidepressants*
α-Adrenergic receptor agonistsAnxiolytic (buspirone*)SSRIs (fluoxetine,† sertraline,† fluvoxamine, paroxetine†)
Anticonvulsants (valproic acid, carbamazepine, lamotrigine, vigabatrin) for
EEG abnormalities without seizures: glucocorticoids (corticotropin, prednisone)
α-Adrenergic receptor agonists (clonidine,† guanfacine)Antihistamine (diphenhydramine,† hydroxyzine†)Melatonin*Sedating SSRIs (trazadone) Sedative-hypnotics (diazepam, zolpidem)Tricyclic antidepressants (clomipramine)
α-Adrenergic receptor agonists (clonidine, guanfacine) Atypical neuroleptics Anxiolyticsβ-Blocker (propranolol) Dopamine receptor blockers (haloperidol, thioridazine, chlorpromazine, pimozide) Opiate receptor antagonsist (naltrexone) SSRIs, tricyclic antidepressants
Atypical neuroleptics (risperidone, olanzapine)
SSRIs (fluoxetine, sertraline, fluvoxamine)
EEG = electroencephalogram; SSRIs = selective serotonin reuptake inhibitors. *First-line treatment for particular behaviors according to Tsai.132†Preferred alternatives if first-line not effective (Tsai132). ‡First-line treatment for individuals with high-functioning autism (Tsai132).
of dopamine, in their cerebrospinal fluid,75 lending
Clozapine differs from other neuroleptics because
support to the hypothesis that elevated dopamine lev-
it binds D , α-adrenergic, and serotonergic receptors
els may cause some of the behaviors exhibited by peo-
more potently than either D or D receptors. Double-
ple with autism. Dopamine antagonists have been
blind placebo-controlled studies of this medication86
shown to decrease aggression and self-injurious behav-
and a single-blind dose escalation study with adults87
iors, but whether this is a direct effect of the medication
demonstrated decreases in self-injurious behaviors,
or the result of sedation is debated.76 Research investi-
aggression, and stereotypies. Clozapine may cause seda-
gating the effects of four neuroleptics, haloperidol,
tion, lethargy, and extrapyramidal side effects that are
pimozide, risperidone, clozapine, and other atypical
mild at peak effective doses.87 However, clozapine use is
limited by its most serious side effect, agranulocytosis. Haloperidol (Haldol) and pimozide (Orap) Although
Serotonin Agonists Because it has been hypothesized
haloperidol acts primarily at D sites, it does have some
that serotonin function may play a role in autism, inter-
effect on other dopaminergic, α-adrenergic, and sero-
est in medications that influence serotonin levels has
tonergic receptors. Double-blind placebo-controlled
arisen. Evidence for serotonin-related abnormalities
studies involving children with autism have demon-
in autism includes high peripheral serotonin levels,
strated a decrease in mood lability, temper tantrums,
decreased responses to neuroendocrine challenge stud-
hyperactivity, stereotypies, and withdrawal and improve-
ies,88–89 and changes induced by tryptophan-free
ments in attention and social behavior.77–79 The reduc-
diets.90 In addition, antibodies to central nervous system
tion of interfering behaviors may lead to an increase in
serotonin receptors may be found in people with
learning as measured by discrimination tasks.77
autism, but the research exploring this possibility has
Haloperidol is very sedating for some children. In addi-
tion, a small number experience episodes of acute dys-
Fenfluramine An early study of the use of fenflu-
tonia. Unfortunately, because of the extrapyramidal side
ramine in three boys with autism suggested that using
effects of tardive and withdrawal dyskinesias, which
this medication may have beneficial effects on social,
have been observed in children with autism,80,81 the use
affective, motor, communicative, and cognitive func-
of haloperidol and related neuroleptics is limited to the
tioning.94 Since that study, the effect of fenfluramine on
treatment of severe behaviors that are unresponsive to
children who have autism has been studied further. This
medication may not be more effective than placebos in
Pimozide mainly affects D receptors. In a double-
treating autistic behaviors.95–97 In addition, the nega-
blind placebo-controlled study including children and
tive effects are thought to outweigh the potential bene-
adolescents, pimozide was shown to decrease aggressive
fits of this drug.98 Although fenfluramine increases
behaviors but to have no effect on self-injury.82 More
serotonin levels over the short term by causing pre-
information about the side effects of this medication is
synaptic release and blocking serotonin reuptake, it even-
tually leads to a reduction in brain serotonin and
Risperidone (Risperdal), clozapine (Clozaril), olanza-
5-hydroxyindoleacetic acid, the main metabolite of
pine (Zyprexia), quetiapine (Seroquel), and ziprasidone
serotonin. Fenfluramine also decreases plasma norepi-
(Geodon) Because haloperidol has high D potency,
nephrine levels and increases dopamine turnover. This
which corresponds to extrapyramidal toxicity, the effects
drug may cause irreversible changes in serotonergic
of atypical neuroleptics, such as risperidone and cloza-
neurons,99 decreased norepinephrine levels,100 and car-
pine, have been studied. Other atypical neuroleptics,
such as olanzapine, quetiapine, and ziprasidone, may be
Tricyclic Antidepressants: Clomipramine (Ana-
used, but research on the use of these drugs to treat
franil), Desipramine (Norpramin, Pertofrane), and
autism needs to be completed. Risperidone is an equally
Imipramine (Tofranil) Tricyclic antidepressants, such
potent antagonist of D and serotonin receptors.
as clomipramine, desipramine, and imipramine, are
Treatment of severe behaviors, including self-injury,
named after their 3-ringed structure and are used
aggression, explosivity, agitation, and hyperactivity in
primarily to treat depression and obsessive-compulsive
children and adults in open-label trials 83–85 and in a
disorder. The tricyclic antidepressants block norepi-
double-blind placebo-controlled study of adults,84 has
nephrine and serotonin uptake into neurons. Clomi-
been demonstrated. Improvement in social relatedness
pramine and imipramine are nonselective and inhibit
may be observed also.10 Sedation and weight gain, how-
the neuronal reuptake of serotonin and norepinephrine.
Clomipramine also has some D blocking and opioid
Pervasive Developmental Disorders: Autism
effects. Desipramine acts mainly as a noradrenergic ago-
with autism make global behavioral, cognitive, lan-
nist. It is hypothesized that these medications could be
guage, affective, and social progress when taking fluox-
useful if the serotonin system is involved in the patho-
etine and that those who respond to treatment are more
likely to have a family history of major depressive dis-
In a double-blind study of the effects of clomipramine
order than children who have no response.111 Fluoxe-
and desipramine, clomipramine was reported to be
tine use was associated with hyperactivity, agitation,
superior to placebo in reducing anger and obsessive-
aggression, decreased appetite, and sleep disturbance in
compulsive behavior. Clomipramine and desipramine
some of the participants of the above studies.
were equally effective, but better than a placebo, in
In a double-blind placebo-controlled study, fluvox-
decreasing hyperactivity.102 In addition, open-label
amine was found to decrease aggression and obsessive-
trials have shown that clomipramine use may lead to
compulsive behaviors and improve language skills in
improved social relatedness and reduced obsessive-
adults with autism.113 Side effects occurred in only a
compulsive behaviors, aggression, and self-injury 103–106
small subset of patients and included nausea and seda-
in individuals with autism and other pervasive develop-
tion that subsided with time. Fluvoxamine may have
very different effects on children. In a double-blind
Although tricyclics may prove to be very helpful in
placebo-controlled study of children and adolescents
the treatment of autism, serious side effects can result
with autism and other PDDs, only 1 of 16 children ben-
from elevated serotonin levels and anticholinergic activ-
efited from the use of fluvoxamine. In addition, more
ity. For example, imipramine is not recommended for
side effects, including sleep disturbance, hyperactivity,
the treatment of children with autism because it may
agitation, aggression, ritualistic behaviors, anxiety,
produce seizures, withdrawal, abnormal speech, and
appetite changes, irritability, problems with concentra-
negative behavioral changes.107 Possible side effects of
tion, and impulsivity were observed in this study113 than
clomipramine include seizures, cardiac abnormalities,
in the earlier investigation involving adults.108
aggression, tremor, agitation, sedation, weight gain,
Data from open-label trials show that sertaline may
sleep problems, and constipation.108 No extrapyrami-
be helpful in improving social interaction skills, aggres-
dal effects are associated with clomipramine treatment
sion, self-injurious behavior, anxiety, irritability, tran-
of autism.109 Clomipramine may be more effective and
sitioning behavior, and repetitive behavior in adults
produce fewer negative side effects in adolescents and
and children with autism, other PDDs, or mental retar-
dation. Unfortunately, this medication has been asso-
Selective Serotonin Reuptake Inhibitors: Fluoxetine
ciated with increased anxiety, agitation, and syncope in
(Prozac), Fluvoxamine (Luvox), Sertaline (Zoloft),
some individuals.108 Two case reports114,115 suggest that
and Paroxetine (Paxil) Selective serotonin reuptake
paroxetine may be helpful in reducing self-injurious
inhibitors (SSRIs) act by blocking serotonin reuptake
behaviors, irritability, and tantrums in children with
specifically. SSRIs have fewer side effects than tricyclics,
autism. Posey and colleagues found that agitation and
yet, when treating depression or anxiety in people with
insomnia may result from the use of doses above a
autism, hyperactivity, agitation, and insomnia may
result and smaller doses than those used to treat depres-
Anxiolytics: Buspirone (Buspar) Buspirone is used
sion or anxiety may be needed.110 In addition, children
in the treatment of generalized anxiety disorder, and
with autism appear to be more likely than adults to
problems with anxiety are often reported in children
develop negative side effects as a result of SSRI use. 108
with autism. Buspirone is a partial serotonin receptor
A family history of affective disorders is associated with
agonist that may also serve as a D receptor antagonist.
a positive response to these medication in people with
In a study of 4 children with autism taking buspirone,
autism.111 An overview of four SSRIs, fluoxetine, flu-
Realmuto and colleagues116 found decreased hyperac-
voxamine, sertaline, and paroxetine, is provided.
tivity and stereotypies in two children. Other researchers
Fluoxetine has been used successfully to reduce
have asserted that buspirone reduces self-injurious
obsessive-compulsive behavior and depression in people
behaviors in adults with developmental disabilities.117
who do not have autism. One open-label case series
Opiate Receptor Antagonist: Naltrexone Theories
demonstrated global behavioral improvements, as mea-
that elevated levels of β-endorphin and other brain opi-
sured by the Clinical Global Impression Scale, in 15 of
oids may cause self-injurious behavior in some individ-
23 participants with autism ranging in age from 7 to 28
uals with autism have provided the basis for the
years.112 DeLong and colleagues reported that children
hypothesis that opiate receptor antagonists, such as nal-
trexone, may reduce these behaviors. Although double-
of the study participants was taking neuroleptics or
blind placebo-controlled studies have demonstrated
mood-stabilizing drugs also. Improvements in aggres-
modest decreases in self-injurious behaviors and/or
sion, impulsive behavior, self-injurious behavior, social
motor hyperactivity with the use of naltrexone in chil-
skills and interest, and speech were seen.125,126
dren,118,119 a double-blind placebo-controlled study of
Clonidine has been shown to have beneficial effects
adults with autism showed that naltrexone produced
in studies with double-blinded placebo-controlled
no decrease in self-injurious behaviors and led to an
designs.127,128 In these studies, parents reported that
increase in stereotypic behavior.120 A study that used
their children were less hyperactive and irritable and
videotapes of six children in natural settings to judge
more attentive, calm, and social. Clonidine may not be
changes in behavior suggests that naltrexone produces
appropriate for treating all children with autism, how-
improvements in social behavior (including initiations),
ever.128 Side effects experienced by some children
stereotypy, and attention relative to a placebo.121 One
include fatigue, sedation, hypotension, clonidine toler-
benefit of naltrexone is that it does not have to be
ance, and increased irritability.127,128 Guanfacine has
administered every day because of its long half-
been proposed as an alternative α2 noradrenergic ago-
life. However, liver function tests should be monitored
nist, which may have fewer side effects, but research with
while one is taking naltrexone,109 and it may cause an
people who have autism needs to be conducted.123
increase in self-injurious behaviors in some people.122
Mood Stabilizer: Lithium Lithium is typically used
In addition, its bitter taste may lead to decreased com-
prophylactically to treat mood swings in people with
bipolar disorder. This drug’s mechanism of action is
Stimulants Stimulants increase the activity of
unknown but may involve ion transport, neurotrans-
dopamine and other catecholaminergic neurotransmit-
mitters, and/or inositol phosphates. The use of lithium
ters. Medications such as methylphenidate (Ritalin) and
to change mood or behaviors in individuals with autism
dextroamphetamine have been used in attempts to
has not been shown to be effective unless the individual
improve attention and hyperactivity in children with
has been diagnosed with bipolar disorder or has a fam-
autism.123 In fact, Aman and Langworthy assert that
ily history of this illness. However, lithium has been
stimulants may be used more frequently than any
reported to decrease the aggressiveness and impulsive-
other prescription medication with children who have
ness of one adult with autism when used in conjunc-
autism.123 Conflicting results have been obtained in
studies of stimulant effects on the behavior of children
Anticonvulsants: Valproic Acid (Depakote),
with autism. Stimulants may be more effective in reduc-
Carbamazepine (Tegretol), and Lamotrigine The anti-
ing inattention and hyperactivity in children with autism
convulsants valproic acid, carbamazepine, and lamo-
who have high-functioning autism than with those who
trigine have been used in individuals with autism who
have below-average IQ scores109; however, stimulants
have epilepsy or epileptiform electroencephalograms
may actually increase stereotypies, activity level, fearful-
(EEGs), without clinical seizures. There is some evidence
ness, separation anxiety, tachycardia, delusions, tics and
based on studies, which did not include participants with
autism, that valproic acid and carbamazepine may be
Noradrenergic Agents: Propranolol (Inderal),
helpful in reducing aggression regardless of the person’s
Nadolol (Corgard), and Clonidine (Catapres) Although
diagnosis or EEG status.129,130 However, the efficacy of
there is little evidence that norepinephrine (NE) abnor-
these drugs in people with autism has not been proven.76
malities are related to autism, drugs that reduce NE
Belsito and colleagues found lamotrigine was not more
activity have been used in the treatment of autism.124
effective than placebo in improving a variety of behav-
β-Blockers, such as propranolol and nadolol, inhibit NE
iors in a double-blind study of children with autism.131
action by blocking NE receptors. Clonidine acts as an α2
Sleep Aids: Melatonin, Clonidine (Catapres),
noradrenergic agonist. Perhaps a decrease in overall level
Diphenhydramine (Benadryl), Hydroxyzine (Atarax,
of arousal is responsible for the effect of these drugs on
Vistaril), Trazadone (Desyrel), Zolpidem (Ambien),
patients with autism. A review of three noradrenergic
Diazepam (Valium) Tsai recommends melatonin as a
agonists, propranolol, nadolol, and clonidine is provided.
first-line pharmacologic treatment for sleep distur-
The results of an open-label trial suggested that pro-
bances.132 Melatonin is a neurohormone that is associ-
pranolol and nadolol may be helpful in the treatment of
ated with the regulation of sleep-wake cycles. Although
autism. In this open-label study adults with autism
little is known about the potential side effects,133 mela-
received either propranolol or nadolol. All except one
tonin can be an effective treatment of insomnia in peo-
Pervasive Developmental Disorders: Autism
ple who have autism.134 However, there is a concern
claims made about many of these therapies. It is possible
about the quality of the products available because
that a placebo effect or the changing natural course of
melatonin is not classified as a medication so that there
the autism underlies the apparent efficacy of some of
is less scrutiny over its production. The AAP recom-
these approaches; therefore, more research is needed.
mends occasionally withdrawing sleep aids so the effects
Reviews of the evidence supporting or refuting the
of these medications can be monitored over time.1
effectiveness of many alternative treatments are provided
Medication with sedating effects may be helpful
by the AAP,10 Dawson and Watling,135 Farber,136
in inducing or maintaining sleep. Clonidine, an
Goldstein,137 Gupta,16 Johnston,138 Nickel,139 Page,15
α-adrenergic blocker discussed above, has been used
to improve sleep patterns in children with autism.134Antihistamines with sedating side effects, such asdiphenhydramine and hydroxyzine, may be useful in
CHOOSING TREATMENTS
some patients; however, these medications may produceexcitation rather than sedation in some children.132
With regard to any treatment, it is essential to help fam-
Other drugs are available for the short-term treat-
ilies to understand the important cost-benefit issues.
ment of severe sleep problems that do not respond to
What are the costs of a particular treatment? Con-
other medications. Trazadone is an SSRI with sedating
sider the physical, emotional, and financial burdens
properties. Benzodiazepines, such as diazepam, bind
imposed by particular therapies. Have the potential
central nervous system GABA receptors, producing
harmful short- and long-term effects of a treatment
hyperpolarization and neuronal inhibition. Some ben-
been explored? Can ongoing approaches be continued
zodiazepines induce sleep, but psychological and phys-
while a new one is implemented? This question is par-
ical dependence may develop. The hypnotic zolpidem
ticularly important to consider if the new treatment is
also produces a GABA-mediated reduction in neuronal
not successful. Parents should be reassured that it is okay
firing. Zolpidem is not a benzodiazepine and is less
to not attempt treatments that may come at too high a
price for the child and his or her family, especially whenthe efficacy of such treatments is questioned.
What is the evidence supporting the use of a partic-
ALTERNATIVE TREATMENTS
ular treatment? Anecdotal accounts are important toconsider, but pediatricians can educate families about
Because neither the cause nor the cure of autism is
the importance of scientific investigation and how to
known, alternative approaches to treatment will con-
evaluate different types of evidence. Consider the com-
tinue to be pursued by parents and care givers. Many of
munication, language, social, cognitive, and physical
the approaches used for autism, including some of the
characteristics and age of the individuals with which a
pharmacologic treatments discussed in the previous sec-
treatment has been successful in the past when evaluat-
tion, have not been proven to be beneficial using rigor-
ing whether or not a treatment is likely to be effective
ous studies. Some alternative treatments that have been
endorsed in the past or that are currently being used
How will outcomes be evaluated? Health care pro-
with some children include the administration of mega-
viders can emphasize the importance of gathering infor-
vitamins and trace minerals (particularly a pyridoxine/
mation as systematically as possible about a child’s
magnesium combination), dimethylglycine, intravenous
baseline level of functioning and his or her progress so
immunoglobulin, adrenocorticotropic hormone (ACTH),
that future decisions about whether or not to continue
and secretin. In addition, special diets (including a low-
a treatment can be made. Additionally, changing only
casein and/or low-gluten diet), anti-Candida therapy,
one aspect of a child’s treatment plan at a time is crucial
and chelation of toxic substances (especially lead) have
in being able to attribute success to the appropriate
been used. Alternative behavioral approaches, such as
Dolman-Delcato patterning, holding therapy, imitation
Freeman offers other considerations.140 These in-
of autistic behaviors, sensory integration and auditory
clude approaching new treatments with hopeful skepti-
integration training, and facilitated communication,
cism; beware of programs that claim to be appropriate
have been attempted also. Impressive anecdotal accounts
for all individuals with autism; beware of programs that
of success exist for most of these methods. Nevertheless,
obstruct an individualized treatment approach; know
there is a paucity of well-designed studies exploring the
that there are several treatment options for individuals
with autism; know that all treatments should be based
Table 16–8 Quality of Life Variables to Judge
on individualized assessment; know that no new treat-
Outcomes for Older Individuals with Autism146
ments should be provided until the treatment givers
demonstrate assessment procedures that determine its
Participate in activities with family members and friends
appropriateness for the person with autism; and know
Included in family or friends’ events (eg, holidays, weddings,
that new treatments have often not been scientifically
Contact with family and friends as much as desired
LONGITUDINAL OUTCOMES OF AUTISM
Assess transportation (eg, use bus, walk, ride bike, ride in car)
Shop for items (eg, groceries, clothes, gifts)
Many myths are associated with autism. People, for
Make choices (eg, what video to watch, movie to see, place to eat)
example, often mistakenly believe that all children with
Attend special events (eg, sports, concerts)
autism have hidden savant skills. Two other miscon-
Participate in extracurricular activities (eg, YMCA, bike club,
ceptions are that people with autism can be cured and
that as adults, individuals with autism will be depen-dent and nonparticipating members of their commu-
nity. These latter two myths reflect the traditional
Work at job that is enjoyable and provides self-satisfaction
method of judging outcomes, the comparison of the
abilities of people with autism to the development of
those who do not have disabilities. The traditional view
defines outcome as a function of typical social devel-
opment and levels of achieved independence,141–145
Opportunity to learn to try new things and meet new
which are best predicted by level of IQ and develop-
ment of speech. It is not surprising that researchers
have reported poor outcomes for most individuals with
autism using these outcome criteria.141, 142
Opinions and choices are considered valid and important
Because autism is a lifelong disability that causes
Is provided time and space to be alone when desired and has
most people with it to have persistent social problems
and is often associated with some degree of mental
Is provided enough information to make valid choices and not
retardation, an alternative view of outcome may be
have to refuse them because of a lack of information,
more useful and valid for parents, care givers, and treat-
ment providers.146 Using an alternative framework,
outcome is based on the achievement of individualized
Takes responsibility for personal and home chores as much as
goals that are established for each person. Also, this
possible and in return takes pride through this accomplishment
conceptualization of outcome encourages the con-
and receives recognition as contributing to the family
sideration of an individual’s quality of life (QOL). As
Bathe, wash and style hair, shave, maintain personal hygiene
individuals with autism grow older, QOL becomes
especially important. A list of QOL variables for fami-
Maintain health and wellness through understanding of
lies and care givers to consider is provided in Table
16–8. Enhancing competence is the goal of interven-
tion and results from the interactions between childrenand their environments. This definition of competencede-emphasizes the degree to which pathology existsonly within the child and recognizes the contribution
positive research results on the effects of early inter-
of the environment to development and learning.
vention.52 Thus, the influence of the environment on
Competence, defined as the achievement of functional
development and outcome is substantial and ongoing
and meaningful life skills, serves as a protective factor
that offsets risk factors such as underlying impairmentsseen in autism.146 The evidence for the environmental
We would like to acknowledge Gail Williams, MD for her
influences on outcome in autism is confirmed by the
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