Infants & Young Children
Vol. 21, No. 4, pp. 256–271
c 2008 Wolters Kluwer Health | Lippincott Williams & Wilkins
Copyright Communicating About Autism
Decreasing Fears and Stresses
Through Parent-Professional
Partnerships
Larry A. Gray, MA; Emily R. Msall, MA;
Michael E. Msall, MD
There is increasing public and healthcare provider awareness about the early signs and developmental challenges of children with autistic spectrum disorders (ASDs). Healthcare professionals
are guided by several major policy statements regarding the diagnosis and management of autism.
There remain substantial gaps between these guidelines and families’ needs during the diagnostic
process. This article provides a developmental and behavioral perspective for the professionals
who desire to find guideposts in task of supporting families throughout the diagnostic process of
autism. We illustrate the diversity of the ASDs using the International Classification of Functioning, Disability and Health Model and describe developmental and behavioral perspectives about
the autism diagnostic process. Our overall goal is to enhance parent and professional collaboration in promoting the establishment of medical homes, accessing the highest quality developmental assessments, and implementing comprehensive supports for parents of children with ASDs.
Key words: autistic spectrum disorders, counseling, family supports, functioning
T
HERE is increasing awareness about the
early signs and developmental challenges
of children with autistic spectrum disorders (ASDs) (Chakrabarti & Fombonne, 2001;
Fombonne & Chakrabarti, 2001). Major pol-
Author Affiliations: Sections of Developmental &
Behavioral Pediatrics and Community Health
Sciences, University of Chicago Comer Children’s
Hospital, Chicago, Illinois (Dr Gray and Ms Msall);
and Institute of Molecular Pediatrics and Kennedy
Center on Mental Retardation and the LaRabida
Children’s Hospital, Chicago, Illinois (Dr Msall).
The authors acknowledge Dr Peter Smith, Melissa Gray,
CPNP, and the University of Chicago Early Intervention
Team who provided feedback and a creative team approach to advocating for quality care pathways and
family supports. This article is dedicated to Charley
Blondis who taught all of us the value of being an optimal family member of a sister with genetic and autistic
spectrum challenges. His untimely death highlighted the
gaps between a culture of violence and a community of
caring.
Corresponding Author: Larry A. Gray, MD, Section of
Developmental & Behavioral Pediatrics, University of
Chicago Comer Children’s Hospital, 950E 61st St, SSC
Room 227, Chicago, IL 60637 (lag@uchicago.edu).
256
icy statements by the American Academy of
Pediatrics and the National Academy of Sciences have provided a template for widely
disseminated state-of-the-art strategies for diagnosis and management (Committee on Children With Disabilities, 2001a; National Research Council Committee on Educational Interventions for Children With Autism, 2001).
However, there remain substantial gaps between these guidelines and families’ goals
of feeling supported and accessing quality
and comprehensive early childhood services
(Anders & Gardner, 2003; Renty & Roeyers,
2006). The purpose of this article is to provide developmental and behavioral pediatric
perspectives for healthcare professionals on
ASDs with respect to communicating the developmental diagnosis, explaining medical advances to families, and providing ongoing family supports. We build on the International
Classification of Functioning, Disability and
Health (ICF) framework of enablement, functional assessment, and child and family wellbeing (World Health Organization, 2001). In
approaching the developmental diagnosis of
Communicating About Autism
autism, we strive to begin a dialogue about
the process of developmental diagnosis in
the setting of a child’s strengths and challenges while addressing the complex hopes,
fears, stressors, and typical lack of family supports. In addition, we discuss some of the
strengths of a developmental diagnostic approach that emphasizes a spectrum of outcomes and possibilities as well as some of
the pitfalls of a categorical diagnosis, particularly when families in desperation try complementary interventions that may have adverse
effects. Our goal is not to review the complexity of accepted and/or alternative treatments, as this has been recently done by the
National Academy of Sciences (National Research Council Committee on Educational Interventions for Children With Autism, 2001)
and Hyman and Levy (2005), but to highlight
how the primary care provider positively impacts the diagnostic process and how ongoing family supports can be provided as families negotiate the complexity of management
in the birth-to-3 and early preschool years. In
this way, we begin to develop both problemsolving strategies and approaches essential
to optimizing health, development, and functional competencies.
ADVANCES IN PEDIATRICS AND
DEVELOPMENTAL MEDICINE
Major advances in pediatrics, child development, and developmental neurosciences
have enhanced our understanding of children
with autism (Bristol, McIlvane, & Alexander,
1998). These advances have included the
prevention of neurodevelopmental sequelae in children with phenylketonuria (PKU).
PKU is an inborn error of metabolism
whereby children fed milk or natural proteins develop autism and developmental
disabilities. Through specialized nutritional
interventions, requiring both metabolic formulas and biochemical monitoring, children
are severely restricted in their natural protein
intake. Children with PKU cannot drink cow
or soy milk or eat cookies, crackers, hamburgers, ice cream, pizza, cheese, hot dogs, cold
257
cuts, or cake. The special protein formula provides the equivalent of a liver transplant and
dialysis machine. In all 50 states, screening for
PKU takes place in newborns whereby, after
confirmatory biochemical analysis, a specialized biochemical formula is started.
Major progress in immunizations has led
to the near elimination of congenital rubella,
measles encephalitis, and Haemophilus
influenzae meningitis and resulting postinfectious developmental disabilities including
ASDs (Fombonne & Chakrabarti, 2001;
Goldston, Gruenberg, & Lewis, 1986; Halsey,
2001; Halsey, Hyman, & Conference Writing Panel, 2001). Prior to these vaccines,
substantial numbers of children developed
intellectual disability as well as neurological
disorders.
Neurodiagnostic advances have included
the early detection of visual and hearing disorders, communicative and social developmental screening tools for evaluating parental
initial concerns, and specific assessment
scales for communication, play, social behaviors, and adaptive skills (Ozonoff, Rogers,
& Hendren, 2003). Molecular genetic advances have included detection of fragile
X syndrome, expanded banding karyotypes
and FISH analysis for regional hot spots especially on chromosomes 15 and 7, and the
genetic markers for the Rett syndrome and
the tuberous sclerosis complex. The former
is an X-linked dominant disorder whereby the
MECP mutation impacts on a girl’s ability to
learn purposeful hand skills and communicative skills. The latter is an autosomal dominant neurogenetic syndrome with complex
seizures, difficulty learning language, and social skills, and with more than half of the
children meeting criteria for ASDs. Despite
these molecular advances, most children with
other neurodevelopmental disorders including autism cannot be given an exact etiologic
explanation.
Research networks have been established
by National Institutes of Child Health and
Human Development and the Centers for Disease Control and Prevention to understand
the epidemiology, genetic and environmental
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INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
Table 1. Stressful myths and autism
Myth
Reality
Myth
Reality
Myth
Reality
Myth
Reality
Myth
Reality
Myth
Reality
Myth
Reality
Autism is caused by immunization of vulnerable children.
Children not immunized with rubella, measles, mumps, hemophilic influenza,
pneumococcal, and pertussis vaccines have high rates of developmental disabilities
including deafness, blindness, cerebral palsy, epilepsy, and autistic spectrum disorders.
Autism is a mental illness.
Autism is a developmental disability impacting on understanding and use of language,
complex learning, and social communication
Autism is caused by problems during labor and delivery.
Prematurity and neonatal complications have not been scientifically linked to autism.
Major known etiologies associated with autism include phenylketonuria, tuberous
sclerosis, congenital rubella, fragile X syndrome, chromosomal disorders, and severe
retinopathy of prematurity.
Children with autism cannot learn.
Children with autism have strengths in motor skills, fine motor manipulative skills,
nonverbal intelligence, and basic adaptive skills. There is a range of communicative,
cognitive, and complex adaptive abilities. All children with autism learn.
Autism is caused by poor parenting.
Autism is a neurobiological disorder whereby brain systems integrating language,
complex learning, and social communication are underdeveloped.
Experimental alternative medical treatments involving specialized diets, megavitamins,
and natural therapies can cure autism.
Autism is not caused by food, allergies, or malabsorption. The best treatments for autism
are special education programs that build on a child’s strengths, provide family
supports, and comprehensively address communicative, learning, and behavior
challenges. Children with autism with gastrointestinal concerns should receive
competent pediatric care.
There is no role for pediatric medicine for children with autism.
All children require a medical home that monitors growth and development, identifies
sensory, neurological, and health conditions that can interfere with progress, helps set
comprehensive goals that optimize adaptive functioning, and advocates for proactive
community programs that provide quality family supports.
etiologies, and developmental processes
involved in children with autism (TagerFlusberg, Joseph, & Folstein, 2001). In
addition, clinical research networks of multidisciplinary professionals and specialized
university-affiliated centers of excellence
have developed to explore advances in
psychopharmacology, communicative and
developmental interventions, and alternative
medicine treatments (Arnold et al., 2000; Levy
& Hyman, 2002; Rogers, 1998). This systemic
collaboration offers the promise for scientific advances, but has not quieted several
common misconceptions that exist regarding children with autism. Table 1 provides
a list of some of the most frequent myths
and the evidence-based reality that defines
sources of family uncertainty.
There is also another major myth that there
is an explosive epidemic of autism due to
childhood immunizations (Nelson & Bauman,
2003; Murch et al., 2004; Offit & Jew, 2003).
This leads to both suspicion of medicine
and failure to understand that the preponderance of evidence supports the benefit
of immunizations for the prevention of illness in children with autism and preventing
both autism and severe disabilities in young
children. For example, without rubella vaccine, the United States would experience
Communicating About Autism
epidemics of congenital rubella. Prior to this
vaccine, as many as 11 000 fetal deaths and
2000 neonatal deaths occurred because of
congenital rubella. In addition, more than
20 000 newborns were affected with the congenital rubella syndrome (Goldston et al.,
1986). The sequelae of this syndrome include blindness in 10%, deafness in 50%,
autism in 25%, as well as mental retardation, epilepsy, and cerebral palsy (Chess,
1978). Rubella vaccination prevents these epidemics. Prior to measles vaccine, significant
numbers of children died from measles pneumonia and measles encephalitis. In 1923,
more than 10 000 deaths were reported in
1 year because of measles. Between 1950
and 1962, almost 500 children per year died
of measles (Goldston et al., 1986). In 1982,
after a decade of immunization control efforts, there were 2 deaths. Approximately 1 in
1000 children with measles develops measles
encephalitis and more than 50% have devastating long-term sequelae including autism
(Benda, 1952). In an era where the promise of
neuroscience has not yet brought new restorative treatments, immunizations are the best
way to prevent both autism and other developmental disabilities.
259
ing, toileting, and bathing. In older children,
these tasks include reading, preparing meals,
shopping, and washing clothes. Participation
means involvement in community life, such as
relationships with peers, going to school, and
recreational activities.
The ICF model accounts for contextual factors in a child’s life, including environmental
and personal factors. Environmental factors
include policy, social and physical facilitators
and barriers, positive and negative attitudes
of others, legal protections, and discriminatory practices. Personal factors include age,
gender, interests, and sense of self-efficacy. A
variety of preschool scenarios using the ICF
model are illustrated in Table 2 for preschool
children with ASD. These scenarios include
a 1-year-old girl with infantile spasms secondary to tuberous sclerosis complex, 2-yearold boy who is nonverbal with autism, a
3-year-old girl with blindness and developmental regression, and a 4-year-old boy with
fragile X syndrome, challenging behaviors,
and autism. The ICF model explicitly measures functional strengths, social role activity,
community participation, and environmental
facilitators.
A MODEL FOR ASSESSING ENABLEMENT
AMONG CHILDREN WITH ASDs
THE SPECTRUM OF AUTISM AND
RELATED PERVASIVE DEVELOPMENTAL
DISORDERS
The World Health Organization (2001) proposed a strengths- and supports-based model
framework for describing individuals with disability. The ICF model describes a child’s
health and well-being in terms of 4 components: (1) body structures, (2) body functions, (3) activities, and (4) participation.
Body structures are anatomical parts of the
body, such as organs and limbs, as well as
structures of the nervous, sensory, and musculoskeletal systems. Body functions are the
physiological functions of body systems, such
as digestion and respiration, and also include
psychological functions such as attending, remembering, and thinking. Activities are tasks
done by children, including learning, communicating, walking, carrying, feeding, dress-
Over the past 50 years, autism has been
diagnosed using different labels and criteria.
We currently support the term “ASD” to
encompass the formal categorical diagnoses
of autistic disorder, pervasive developmental
disorder—not otherwise specified (PDDNOS), and Asperger’s syndrome. Currently,
the 2 standardized criteria for diagnosing
these ASDs, DSM-IV and ICD-10, are similar
(Volkmar & Pauls, 2003). Core diagnostic
features include impairments in communication and social interaction coupled with
restrictive and stereotyped patterns of behavior, interests, and activities. Onset is in
the preschool years, with delays in language
understanding and use, delays in joint attention and nonverbal skills, symbolic play
2-y-old boy with autism
Mother has to take off from
work frequently because of
child’s seizures
Health maintenance
organization will not allow
magnetic resonance imaging
or referral to a pediatric
epilepsy center
No out-of-home day care
available for child with
frequent seizures
Contextual factors:
Environmental barriers
Unsteady in sitting, unable to
crawl
Fragmentation between early
interventionists and explicit
deliverables to enhance
communication. Lack of
full-day extended 3-y-old
quality programs
Failure to have communications
strategies for nonverbal
children
Loves swimming with father at
YMCA
Unable to go to relatives
“Presumed” miswiring of
neurological systems involved
in language, development,
and complex behavioral
regulation
Recurrent seizures
Cognitive, communicative, and
neurobehavioral dysfunction.
No seizures, no evidence of
fragile X syndrome
Lack of developmental progress, Difficulty with receptive and
unable to walk or talk
expressive language
transitions, repetitive play,
dietary rigidity
Transfers toys, rolls, laughs
Loves playground and music
activities
Infantile spasms at 6 mo,
tuberous sclerosis complex
1-y-old girl with seizures
and autism
Participation: Age
appropriate roles, chores,
hobbies, and sports
Societal limitations:
Attitudinal, legal, policy,
and architectural barriers
Functional strengths:
Performing activities such
as running, dressing,
communicating, playing
Disability: Difficulty
performing activities
typical for peers
Functional challenges:
Difficulty performing an
activity
Impairment: Loss of organ
structure or function
Pathophysiology: Molecular
or biochemical
mechanisms interfering
with cellular function
Dimension: Definition
Table 2. Dimensions of functioning and participation
Church members request
that child be kept at home
during services
Lack of respite services and
weekend supports
Special education supports,
low-vision aides, bilateral
ankle-foot orthoses,
intense behavior
management program
Horseback riding
Visual, cognitive,
communicative, and
neurobehavioral
dysfunctions
Difficulty with running,
restricted visual fields,
nonverbal, self-injurious
behavior
Climbing
750 g, 26-wk completed
gestation, and severe
retinopathy of prematurity
3-y-old girl with autism
and visual disability
Denied life insurance policy
Because mother works
outside the home, she
cannot attend genetic
support groups
YMCA playgroup
Quality preschool services
and behavioral
management
Cartoon watching, loves
Thomas the Tank
Difficulty with activity, eye
contact
Fragile X syndrome
diagnosed at age 4
Initially with hypotonia and
communication delays
4-y-old boy with autism
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INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
Communicating About Autism
difficulties (ie, pretend play), and difficulty
with social interactions with parents and
peers. Although current reviews mandate a
medical evaluation for autism (Committee
on Children With Disabilities, 2001b; Filipek
et al., 2000), many children do not have an
associated or causative medical condition
(Fombonne, 1999). The medical differential
diagnosis of autism includes global developmental delay, developmental language disorders (DLDs), and severe sensori-neural hearing impairments. There are also many rare
neurogenetic disorders that impact on higher
cortical functions including abstraction,
problem solving, understanding viewpoints
of others, information processing, and regulation of attention (eg, too short, too long, too
inflexible) (Rapin, 1997). In addition, among a
subset of children with language regression, a
specific epilepsy pattern is present and called
the Landau-Kleffner syndrome (Rapin &
Katzman, 1998).
Some uncommon medical etiologies associated with autism include untreated PKU,
tuberous sclerosis complex, retinopathy of
prematurity, congenital cytomegalovirus infection, and fragile X, Lesch Nyhan, and
Moebius syndromes. In addition, several
genetic disorders such as Down, PraderWilli, Angelman, and Williams syndromes and
Duchenne muscular dystrophy have higher
risks for ASDs. The lesson is not that all children with Down syndrome or Duchenne muscular dystrophy manifest behaviors consistent
with ASD, but that among individuals with
developmental and genetic vulnerability (ie,
Down syndrome or Duchenne muscular dystrophy), higher rates of classical autism are
found than the population prevalence of 1
to 2 per 1000 (Yeargin-Allsopp et al., 2003)
and the ASD prevalence of 4 to 6 per 1000
(Szatmari, 2003; Yeargin-Allsopp et al., 2003).
EPIDEMIOLOGY OF PRESCHOOL
CHILDHOOD DISABILITIES
There are improved tools for early recognition and increased awareness of the preschool
presentation of children with ASDs. With
261
expanded definitions of the autistic spectrum, there are more individuals who do not
have the classical comorbidities of mental
retardation/intellectual disability. By including Asperger’s disorder in the autism spectrum, there is increased awareness of the social skill and motor coordination impairments
that impact on school-aged children with
learning disorders. Lastly, including preschool
children with challenging behaviors and communicative and attention disorders as children
with autistic spectrum disorder (PDD-NOS)
substantially increases the number of children
eligible for accommodations (504 Plans) and
special education services (individualized education programs). Thus, to understand the
changing epidemiology of preschool communicative, developmental, and neurobehavioral
disorders, one must understand the background prevalence of communicative and
cognitive disorders in early childhood.
Communicative impairments associated
with developmental disabilities can be classified in terms of severity (high, low) and
prevalence (high, low) (Accardo, 2007). Impairments with high severity and low prevalence include classical (Kanner’s) autism (1–2
per 1000) and significant intellectual disabilities (IQ < 50–55) with a prevalence of 5 per
1000. Those with low severity and high prevalence include mild intellectual disabilities
(30 per 1000), language disorders (100 per
1000), and learning disabilities (70–100 per
1000). It is because of these latter categories
that as many as 20% of school-aged children
may qualify for special education accommodations. Mild intellectual disabilities are
defined as an IQ of 55 to 70, with adaptive
skills more than 2 SDs below the mean,
and are often detected in kindergarten and
early elementary grades. These children are
independent in communication skills and all
activities of daily living. Reading and writing
skills usually advance to a fifth-grade level
before leveling off. Children with moderate
intellectual disabilities ultimately have IQs
of 40 to 55 and present with preschool language delay that later is diagnosed as a more
complicated disability. These children are
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INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
Table 3. Language skills among children with communicative disordersa
Single wordsd
Phrasese
Intelligibility
1-Step commandse
Developmental
language disorder
High-functioning
autistic disorderb
Low-functioning
autistic disorderc
18 (8.3)
27.2 (9.4)
30 (10.8)
23.4 (9.4)
17 (10.5)
29 (11.7)
29 (12.3)
33 (12.5)
20.4 (13.1)
36 (16.3)
30.6 (17.2)
37.4 (14.7)
a Values
represent age in months with (SD).
IQ > 80.
c Nonverbal IQ < 80.
d Significant difference between groups P < .05.
e Significant difference between groups P < .001.
b Nonverbal
independent in all activities of daily living and
eventually able to communicate basic needs
to a caregiver. The major sequelae of this
group of disorders are difficulty in complex
academics, especially in reading paragraphs
and writing book reports. A key question is:
What are the differences in diagnosis and
developmental outcomes among children
with cognitive, language, and ASDs?
Rapin led a multisite multidisciplinary
project whose purpose was to investigate the
neurobiologic basis of ASD and related communication disorders, provide a basis for rational interventions, and improve the training of professionals who educate and care for
these children (Rapin & Autism and Language
Disorders Nosology Project, 1996). The cohort involved 487 children aged 3 to 7 years.
Developmental language disorder (DLD) was
present in 41%, ASDs were present in 36%,
and intellectual disability without autism was
present in 23%. The children were further
divided into high-functioning autistic disorders (HADs; n = 51) and low-functioning
autistic disorders (LADs; n = 125). The highfunctioning group had nonverbal IQs greater
than 80, whereas the low-functioning group
had nonverbal IQs lower than 80. All children
received a comprehensive assessment of neuropsychologic processes including language,
nonverbal intelligence, adaptive behaviors,
academic abilities, and neuromotor skills.
Detailed histories of prenatal, perinatal, and
postnatal events; childhood illnesses; family illnesses; developmental milestones; and
growth, physical, and expanded neurologic
examinations were noted.
Several findings were reported. The presence of developmental disabilities in parents
and siblings was generally not a significant
predictor for DLDs or ASDs. However, in families where one child had an ASD, there was an
increased risk for other children to have either
DLDs or intellectual disability. In a smaller
number of families with one child with ASD,
there was a second child with this disorder.
Neonatal problems were generally not predictive of ASD or significantly different between
the DLD and the ASD.
With respect to early developmental milestones, no child with a DLD or an ASD was
a late walker, defined as not walking independently at age 18 months. Late walking was
present in 25% of children with global developmental delay. Difficulty with pretend play
at 36 months occurred in 25% of children
with DLDs, 49% of children with global developmental delay, and 71% of children with
ASDs. By age 4, only 5% of children with DLDs
could not engage in pretend play whereas
1 in 6 (>15%) of high-functioning children
with autistic disorders and 1 in 6 children
with global developmental delays continued
to struggle with these play skills.
Table 3 illustrates that delays in communicating in phrases and following 1-step
Communicating About Autism
commands significantly differentiated children with ASD from children with DLD. These
findings also highlight why concerns about
communicating in words and phrases and following requests without gestures are key first
signs for the early recognition of autism. Overall, children with DLDs performed better in
both receptive and expressive language skills
than children with ASD and low nonverbal intelligence. These findings also suggest that enhancing communication skills is one of the
key requirements for preschool interventions.
Rapin concluded that most prenatal, perinatal, and postnatal events did not differentiate
between DLDs, high-functioning ASD, autism
with intellectual disability, and mental retardation. Developmentally, 31% of the intellectual disability group and 56% of the autism
group with nonverbal IQ less than 80 had
significantly low IQ scores (IQ < 50). This
study replicated findings from the multicenter Collaborative Perinatal Project that perinatal events do not play a strong causative
role in autism, intellectual disability, and DLDs
(Nelson, 1991).
A DEVELOPMENTAL AND BEHAVIORAL
PERSPECTIVE
The role of healthcare professionals
Autism and ASDs have received a lion’s
share of public and media attention. There
is also increased recognition that has contributed to higher clinical and administrative
prevalence rates over the past 2 decades. Although families and research scientists may
differ on the root-causal pathways for this
increase in prevalence (Baird et al., 2000;
Fombonne, 2003) of children either diagnosed or currently receiving specialized treatment for ASDs, it is timely that the primary
healthcare professional assumes a leadership
role in guiding and supporting families during
the early diagnostic process.
Primary healthcare professionals, however, face several obstacles. First, they are
increasingly called upon to screen for autism
and other developmental disorders as part
of the “well child” visits without adequate
263
infrastructure for time and reimbursement
considerations (Dosreis, Weiner, Johnson,
& Newschaffer, 2006). Second, although
national initiatives at the Center for Disease
Control and Prevention (Autism Information
Center) and policy statements (Committee on
Children With Disabilities, 2001b; Filipek et
al., 2000) have recommended specific autism
screening tools and diagnostic standards (ICD
10, DSM IV), so far very few publications
have addressed the effectiveness of the implementation of these strategies. Finally, because
there is no laboratory or blood test for autism,
the diagnosis remains open for subjective
interpretation of even formal diagnostic
standards. However, consensus exists that
expert clinical judgment is more reliable than
algorithm diagnosis in the youngest of children (Charman & Baird, 2002). These factors
separately or in combination all serve to add
obstacles and confuse the role pediatricians
and primary care providers play in the diagnosis and management of ASDs (Committee
on Children With Disabilities, 2001b).
PRINCIPLES OF THE DIAGNOSTIC
ASSESSMENT
Primary care providers can find guideposts
in this changing landscape by beginning with
the ICF strength-based framework and reviewing the principles of the early childhood diagnostic assessment. One goal of this review
is to provide a bridge for the primary care
provider as the information about the prevalence, diagnosis, and optimal management of
ASDs evolves.
Four converging factors regarding the diagnosis of ASD highlights the importance of this
review. Improved ability to diagnose ASDs at
earlier ages (Lord, 1995; Moore & Goodson,
2003) is linked with pressure to meet early
intervention or school-based special education eligibility requirements and fueled by
emerging information about the effectiveness
of early identification and treatment (Lovaas,
1987; McEachin, Smith, & Lovaas, 1993;
Sheinkopf & Siegel, 1998). However, at the
same time, there is emerging and conflicting
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INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
Table 4. Principles of an ICF aligned developmental assessmenta
1. An integrated and functional model of child development—one that informs how best to help an
individual child—must be central to any assessment and provide a strengths-based framework
for the integration of gathered data.
2. Multiple sources of information about the child’s strengths and weaknesses (past and present)
must be solicited during the assessment.
3. The assessment should have a predictable sequence that plays to the child’s strengths and taps
his or her weaknesses. This process begins first by building alliances and a relationship with
parents, obtaining a strength-based developmental history, observing child in optimal play, and
functionally assessing areas of weakness.
4. To achieve optimal performance, the child must participate only in an assessment with his or
her most trusted caregivers.
5. The timing of child development and the factors that affect the variation of this timing should be
well known by the multidisciplinary assessment team.
6. An optimal assessment should identify the child’s strengths and weaknesses that the child brings
to the next developmental challenge and form the basis for potential intervention efforts if
needed.
8. An optimal assessment should not upset the child or place the child in a deficit-dominated or
vulnerable position.
a Adapted
from Greenspan and Meisels (1996).
information about the long-term stability and
sensitivity of this early diagnostic process
(Charman et al., 2005; Zwaigenbaum et al.,
2006). It is not known which of these factors
plays the dominant influence in the unmet
needs experienced by children with ASD.
Our clinical experience has often reminded
us that the primary healthcare provider is frequently the first to identify and respond to a
family’s developmental concern, and it is critical they understand and play a central role in
overseeing the family’s successful negotiation
of the evaluation process. Equally important,
the primary healthcare provider plays an integrative and educational role for the family
after the diagnostic assessment is completed
and when follow-up with the referral source
is limited.
Based on the work of Meisels and the Zero
to Three Work Group on Developmental Assessment, the principles of an optimal developmental assessment that best serve the
family and primary care provider have been
summarized in Table 4 (Greenspan & Meisels,
1996; Meisels & Atkins-Burnett, 2000; Meisels
& Shonkoff, 1990; Shonkoff & Meisels, 2000).
The best practice components of a developmental assessment for young child with
delays in communication, social skills, and developmental competencies should first contain multiple sources of information about the
child’s developmental progress and functional
capacities. This requires that not only the parents but also the healthcare provider’s and,
possibly, the day care provider’s concerns and
description of the child’s strengths and weaknesses be part of the diagnostic process. A primary healthcare provider should be alarmed
on behalf of the family when the referral diagnostician does not solicit or accommodate the
developmental history and primary care perspective of the child from the previous well
child visits in the diagnostic assessment.
Second, primary healthcare providers
shoulder the responsibility for increased
mandates for developmental screening for
ASD (Council on Children With Disabilities,
Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, &
Medical Home Initiatives for Children With
Special Needs Project Advisory Committee,
2006). This responsibility and role increases
Communicating About Autism
the primary care provider’s part in the
developmental assessment process because
collaborative and sequential assessments
are central to any high-quality autism early
identification, assessment, and family support
management program.
Third, as primary care providers and
systems of care become increasing adept in
providing a medical home for children with
ASD and other special healthcare needs, they
need to join with the parents in identifying the
child’s current competencies and strengths as
well as the skills the child needs to develop to
continue with his or her developmental progression. Providing tips for “surviving your
child’s developmental assessment” (Seven
Tips for Surviving Your Child’s Developmental Assessment assessed at http://www.
zerotothree.org/site/PageServer?pagename=
ter screen tips) is one way the primary care
provider can remain connected to parents
as they embark on the developmental diagnostic process for their child and strive to
manage the child’s lifelong condition after
the diagnostic assessment.
Finally, the ultimate goal of developmental and diagnostic assessments appropriate for
the ICF strength-based model and the medical home is that no parents will suddenly
face as part of the diagnostic process the reality of uncovering a problem that they did
not suspected. When primary care fulfills its
ideal role, parents are heard and supported
up to, during, and after any referral multidisciplinary assessment. In addition, the primary care provider plays an important role
for the parents who have difficulty in relating the initial behavioral or developmental
concerns with the outcome of a diagnosis of
ASD. Keeping the child and the child’s behavior as the central focus of the parent’s concern and the focus of the diagnostic process
helps parents recognize their child’s personhood in the diagnosis process. The primary
care provider’s facilitation of parental observations after the diagnostic process and understanding the terms of the diagnosis of ASD
is an invaluable support as parents adjust their
internal view of their child (Baird et al., 2000).
265
Even when parents perceive the initial diagnosis of ASD as unwarranted and premature,
primary care providers can adopt the “working diagnosis” perspective and join with the
family to refine the diagnosis over time. It is
in this context that the National Academy of
Science recommendations are most pertinent.
This committee recommended that all children with any ASD, regardless of label or level
of severity, be eligible for special education
services that comprehensively address social,
cognitive, communicative, and learning skills.
The therapeutic nature of this supported diagnostic process for parents should not be underestimated (Parker & Zuckerman, 1990) because it allows the introduction of structured
services and for the priority of early intervention services to address communication and
social skill challenges without driving parents
to risky and unproven alternative treatment
(Hyman & Levy, 2005).
CAUTION ABOUT NONTRADITIONAL
THERAPIES
Parents of children with autism are barraged with promises of miracle cures, drug
therapies, and nontraditional therapies to
cure their child (Nickel, 1996; Tanguay, 2000).
Many times, caregivers are willing to try anything to help their child. Nonethical promoters of nonscientific therapies use common
ploys to seduce desperate parents into trying
their treatments. Some common approaches
include exploiting the natural fear of disease,
preying on the uncertainty about traditional
medical care, promising painless and natural
treatments, and claiming miraculous scientific
breakthrough and developmental cures.
One promise of a scientific breakthrough
was the use of secretin to cure autism. A
case study was reported in the literature
that 1 dose of intravenous secretin costing
more than $1000 successfully eliminated
symptoms in a child with autism (Horvath
et al., 1998). Several scientific studies have
been conducted since the original case study.
One undertaken by Coniglio et al. (2001) involved children aged 3 to 10 years diagnosed
266
INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
using DSM-IV criteria for autism. The goal
was to determine whether a single dose of
intravenously administered secretin could
improve communication and socialization
skills in children with autism. Subjects were
randomly divided into treatment and placebo
groups. The Childhood Autism Rating Scale
and Preschool Language Scale–3 (PLS-3)
were administered at baseline, 3 weeks, and
6 weeks after treatment. In addition, caretakers completed the Parent Perception Survey
and the Gilliam Autistic Rating Scale and
were asked several study-specific questions
including “Do you believe your child received
secretin? Have you noticed any changes in
your child’s symptoms?” Results showed that
children who did not receive secretin made
more communicative, behavioral, and developmental progress using these standardized
outcome measures.
In another study, Sandler et al. (1999) randomly assigned 60 children aged 3 to 14 years
to either a single treatment secretin group
or a placebo control group. DSM-IV criteria
were used to diagnose autism (Sandler et al.,
1999). If autism criteria were not met, PDD
was diagnosed. Subjects were administered
the Childhood Autism Rating Scale and the
Autism Behavior Checklist at baseline and at
a 4-week follow-up. Again, the children assigned to the placebo treatment improved on
these behavioral measures more than the secretin group. To date, there have been several other secretin trials involving more than
700 children with autism (Dunn-Geier et al.,
2000; Lightdale et al., 2001; Owley & Steele,
1999; Roberts et al., 2001). In no trial was secretin a miracle cure. However, in all trials, improvement occurred over time in all children
with ASDs, thus demonstrating that all children with ASDs learn. Despite the lack of evidence for secretin’s therapeutic use and even
after being presented the study’s negative results, parents continued to ask the study doctors for ongoing secretin treatment.
Primary care professionals need to embrace the passion parents demonstrate in their
search for supports to their afflicted child.
Rather than a punitive remark or avoiding a
discussion about an alternative treatment, primary healthcare professionals can play a positive role by providing families valuable information to evaluate any alternative treatment.
We have found some useful Web sites and
handouts to offer to families when contemplating the complex issue of and risks associated with alternative treatments.
1. http://www.asatonline.org/ (Association for Science in Autism Treatment,
n.d.)
2. http://www.autismresearchnetwork.org/
AN/default.aspx (National Institutes of
Health Autism Research Network, 2007)
3. Parent handouts have been developed by
The Autism Program. These include:
a. Current Interventions in Autism—
A Brief Analysis at http://www.
theautismprogram.org/autismtreat
ments.asp (The Autism Program,
n.d.-a)
b. Tips for Working With Children
With Autism Spectrum Disorders
at http://www.theautismprogram.
org/tips.asp (The Autism Program,
n.d.-d)
c. Top 10 Things to Remember
When Working With Children With
Autism Spectrum Disorders at
http://www.theautismprogram.org/
top10.asp (The Autism Program,
n.d.-e)
d. Tips for Daily Life—Visiting
the
Dentist
at
http://www.
theautismprogram.org/dentist.asp
(The Autism Program, n.d.-b)
e. Tips for Daily Life—Toilet Training
at http://www.theautismprogram.
org/toilet.asp (The Autism Program,
n.d.-c)
ADMINISTRATIVE AND FUNDING
REALITIES
The primary healthcare provider, as the
central figure in the medical home and because of his or her unique training, interest,
and commitment, is perfectly positioned to
Communicating About Autism
understand and support the special family circumstances that each family brings with a
child who has developmental differences. Unfortunately, Medicaid and private party payers
do not value this expertise or commitment
with their reimbursement schemes. Primary
healthcare providers, pediatricians, and nurse
practitioners and family practice specifically
are best positioned to involve family members in planning the evaluation of a child’s
development. They also foster respectful
communication between parents, referrals to
subspecialty physicians, and allied healthcare
and educational professionals. Helping families integrate the different pieces of an assessment for ASDs (genetics, hearing, neurologic,
and educational) is one valuable mandate of
the medical home.
The American Academy of Pediatrics, and
its national medical home initiative (American
Academy of Pediatrics: The National Center
of Medical Home Initiatives for Children With
Special Needs, n.d.), has advocated a model of
primary care delivery that keeps the primary
healthcare professional central to the process
of identification, family understanding, professional referrals, and diagnostic assessment
for children with developmental differences.
At the same time, this initiatives at the
American Academy of Pediatrics endeavors to
find political and legal avenues to address the
negative financial setbacks that most primary
care providers risk when they choose to maintain this central role for their patients and
families. The American Academy of Pediatrics
has a toolkit as well as updated brochures
to enhance the primary care provider’s
skills (see www.aap.org). In addition, the
National Medical Home Autism Initiative at
the University of Wisconsin and the Maternal
and Child Health Bureau (MCHB) is evidence,
in part, of the way national organizations and
federal agencies are promoting and providing
technical assistance to pediatric healthcare
providers who desire to work with other
partners in the community to serve children
with autism (Fig. 1).
Adopting the ICF model with a strengthsand supports-based framework for describing
267
preschool children with ASD is a perfect
match for primary healthcare professionals. In
collaboration with the larger community of
providers, the key goal is to provide comprehensive coordinated and compassionate care
for children and families faced with the challenges of ASDs.
Building on the ICF framework of enablement, primary care providers will have the
structure to communicate with sensitivity and
mutual respect information about the developmental diagnosis, explain current medical
understanding of autism to families, and provide ongoing family support. Only then will
families have the confidence to increase their
requests to primary care providers for guidance about the range of traditional and nontraditional autistic-specific treatments available. In addition, this framework allows the
physician to prioritize interventions that promote child functioning and enhance family
well-being.
The blending of the ICF framework within
the primary care structure of the medical
home can serve to reveal the added value
of decreasing fears and stresses through efficient parent-professional partnerships. This
added value reflects the teamwork of professional and nonprofessional office staff toward family-centered care management and
enhanced communication. These models also
recognize the wide range of differences in
challenges families of children with autism
face and the increased time and effort required for the ongoing monitoring of the
child’s progress and family adaptation.
CONCLUSION
The major need for families is to feel that
their primary healthcare professional listens
to their concerns and understands the multithreaded information required for a diagnostic assessment. Parents also need to be continually supported in accessing comprehensive
systems of early intervention and preschool
education on behalf of their child. It is most
important to view ASD as a developmental
disorder whereby interventions to enhance
268
INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008
Figure 1. National Medical Home Autism Initiative: Key functions and partners (Waisman Center, 2006).
communication, promote adaptive skills, and
build on the child’s strengths occur. It is a
dangerous practice to assume that there is a
magic bullet that will dramatically cause the
child to be suddenly typical. Unfortunately,
the complexity of human language and the developmental neurobiology of autism do no allow for cures with injections of miracle drugs
or nutrition supplements (Coury & Nash,
2003; Ozonoff et al., 2003; Volkmar & Pauls,
2003). Instead, ASD allows us to understand
how all children can benefit from comprehensive and quality supports that enhance communication, adaptive skills, and functional independence at home and in the community. If
the parent or the child experience challenges
that are too demanding or out of control,
they will not understand the current behavior
and educational technologies that can make a
difference (Rogers, 1998; Siegel, 1996, 2003;
Smith, Eikeseth, Klevstrand, & Lovaas, 1997;
Wetherby & Prizant, 2000; Wing, 2001). The
role of the physician is not to be an expert on
all educational practices but to know the hard
task of parenting children who are motorically
able but communicatively challenged and behaviorally unpredictable. Attention to family
stresses and daily management supports can
make a difference at home, school, and in the
community. In this way families can undertake
the multidimensional management strategies
that promote functional, communicative, social, and adaptive skills. They then can celebrate with professionals the strengths of their
child’s unique way of experiencing the world
and set goals that promote steps to independence, and when challenges persist, know
they will not be abandoned.
Communicating About Autism
269
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