articol autism

Infants & Young ChildrenVol. 21, No. 4, pp. 256–271Copyright c© 2008 Wolters Kluwer Health | Lippincott Williams & Wilkins

Communicating About AutismDecreasing Fears and StressesThrough Parent-ProfessionalPartnerships

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 develop-mental challenges of children with autistic spectrum disorders (ASDs). Healthcare professionalsare 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 diagnosticprocess. This article provides a developmental and behavioral perspective for the professionalswho desire to find guideposts in task of supporting families throughout the diagnostic process ofautism. We illustrate the diversity of the ASDs using the International Classification of Function-ing, Disability and Health Model and describe developmental and behavioral perspectives aboutthe autism diagnostic process. Our overall goal is to enhance parent and professional collabora-tion in promoting the establishment of medical homes, accessing the highest quality developmen-tal assessments, and implementing comprehensive supports for parents of children with ASDs.Key words: autistic spectrum disorders, counseling, family supports, functioning

THERE is increasing awareness about theearly signs and developmental challenges

of children with autistic spectrum disor-ders (ASDs) (Chakrabarti & Fombonne, 2001;Fombonne & Chakrabarti, 2001). Major pol-

Author Affiliations: Sections of Developmental &Behavioral Pediatrics and Community HealthSciences, University of Chicago Comer Children’sHospital, Chicago, Illinois (Dr Gray and Ms Msall);and Institute of Molecular Pediatrics and KennedyCenter on Mental Retardation and the LaRabidaChildren’s Hospital, Chicago, Illinois (Dr Msall).

The authors acknowledge Dr Peter Smith, Melissa Gray,CPNP, and the University of Chicago Early InterventionTeam who provided feedback and a creative team ap-proach to advocating for quality care pathways andfamily supports. This article is dedicated to CharleyBlondis who taught all of us the value of being an opti-mal family member of a sister with genetic and autisticspectrum challenges. His untimely death highlighted thegaps between a culture of violence and a community ofcaring.

Corresponding Author: Larry A. Gray, MD, Section ofDevelopmental & Behavioral Pediatrics, University ofChicago Comer Children’s Hospital, 950E 61st St, SSCRoom 227, Chicago, IL 60637 ([email protected]).

icy statements by the American Academy ofPediatrics and the National Academy of Sci-ences have provided a template for widelydisseminated state-of-the-art strategies for di-agnosis and management (Committee on Chil-dren With Disabilities, 2001a; National Re-search Council Committee on Educational In-terventions for Children With Autism, 2001).However, there remain substantial gaps be-tween these guidelines and families’ goalsof feeling supported and accessing qualityand comprehensive early childhood services(Anders & Gardner, 2003; Renty & Roeyers,2006). The purpose of this article is to pro-vide developmental and behavioral pediatricperspectives for healthcare professionals onASDs with respect to communicating the de-velopmental diagnosis, explaining medical ad-vances to families, and providing ongoing fam-ily supports. We build on the InternationalClassification of Functioning, Disability andHealth (ICF) framework of enablement, func-tional assessment, and child and family well-being (World Health Organization, 2001). Inapproaching the developmental diagnosis of

256

Communicating About Autism 257

autism, we strive to begin a dialogue aboutthe process of developmental diagnosis inthe setting of a child’s strengths and chal-lenges while addressing the complex hopes,fears, stressors, and typical lack of family sup-ports. In addition, we discuss some of thestrengths of a developmental diagnostic ap-proach that emphasizes a spectrum of out-comes and possibilities as well as some ofthe pitfalls of a categorical diagnosis, particu-larly when families in desperation try comple-mentary interventions that may have adverseeffects. Our goal is not to review the com-plexity of accepted and/or alternative treat-ments, as this has been recently done by theNational Academy of Sciences (National Re-search Council Committee on Educational In-terventions for Children With Autism, 2001)and Hyman and Levy (2005), but to highlighthow the primary care provider positively im-pacts the diagnostic process and how ongo-ing family supports can be provided as fami-lies negotiate the complexity of managementin the birth-to-3 and early preschool years. Inthis way, we begin to develop both problem-solving strategies and approaches essentialto optimizing health, development, and func-tional competencies.

ADVANCES IN PEDIATRICS ANDDEVELOPMENTAL MEDICINE

Major advances in pediatrics, child devel-opment, and developmental neuroscienceshave enhanced our understanding of childrenwith autism (Bristol, McIlvane, & Alexander,1998). These advances have included theprevention of neurodevelopmental seque-lae in children with phenylketonuria (PKU).PKU is an inborn error of metabolismwhereby children fed milk or natural pro-teins develop autism and developmentaldisabilities. Through specialized nutritionalinterventions, requiring both metabolic for-mulas and biochemical monitoring, childrenare severely restricted in their natural proteinintake. Children with PKU cannot drink cowor soy milk or eat cookies, crackers, hamburg-ers, ice cream, pizza, cheese, hot dogs, cold

cuts, or cake. The special protein formula pro-vides the equivalent of a liver transplant anddialysis machine. In all 50 states, screening forPKU takes place in newborns whereby, afterconfirmatory biochemical analysis, a special-ized biochemical formula is started.

Major progress in immunizations has ledto the near elimination of congenital rubella,measles encephalitis, and Haemophilusinfluenzae meningitis and resulting postin-fectious developmental disabilities includingASDs (Fombonne & Chakrabarti, 2001;Goldston, Gruenberg, & Lewis, 1986; Halsey,2001; Halsey, Hyman, & Conference Writ-ing Panel, 2001). Prior to these vaccines,substantial numbers of children developedintellectual disability as well as neurologicaldisorders.

Neurodiagnostic advances have includedthe early detection of visual and hearing dis-orders, communicative and social develop-mental screening tools for evaluating parentalinitial concerns, and specific assessmentscales for communication, play, social behav-iors, and adaptive skills (Ozonoff, Rogers,& Hendren, 2003). Molecular genetic ad-vances have included detection of fragileX syndrome, expanded banding karyotypesand FISH analysis for regional hot spots es-pecially on chromosomes 15 and 7, and thegenetic markers for the Rett syndrome andthe tuberous sclerosis complex. The formeris an X-linked dominant disorder whereby theMECP mutation impacts on a girl’s ability tolearn purposeful hand skills and communica-tive skills. The latter is an autosomal dom-inant neurogenetic syndrome with complexseizures, difficulty learning language, and so-cial skills, and with more than half of thechildren meeting criteria for ASDs. Despitethese molecular advances, most children withother neurodevelopmental disorders includ-ing autism cannot be given an exact etiologicexplanation.

Research networks have been establishedby National Institutes of Child Health andHuman Development and the Centers for Dis-ease Control and Prevention to understandthe epidemiology, genetic and environmental

258 INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008

Table 1. Stressful myths and autism

Myth Autism is caused by immunization of vulnerable children.

Reality 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.

Myth Autism is a mental illness.

Reality Autism is a developmental disability impacting on understanding and use of language,

complex learning, and social communication

Myth Autism is caused by problems during labor and delivery.

Reality 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.

Myth Children with autism cannot learn.

Reality 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.

Myth Autism is caused by poor parenting.

Reality Autism is a neurobiological disorder whereby brain systems integrating language,

complex learning, and social communication are underdeveloped.

Myth Experimental alternative medical treatments involving specialized diets, megavitamins,

and natural therapies can cure autism.

Reality 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.

Myth There is no role for pediatric medicine for children with autism.

Reality 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 processesinvolved in children with autism (Tager-Flusberg, Joseph, & Folstein, 2001). Inaddition, clinical research networks of mul-tidisciplinary professionals and specializeduniversity-affiliated centers of excellencehave developed to explore advances inpsychopharmacology, communicative anddevelopmental interventions, and alternativemedicine treatments (Arnold et al., 2000; Levy& Hyman, 2002; Rogers, 1998). This systemiccollaboration offers the promise for scien-tific advances, but has not quieted severalcommon misconceptions that exist regard-ing children with autism. Table 1 provides

a list of some of the most frequent mythsand the evidence-based reality that definessources of family uncertainty.

There is also another major myth that thereis an explosive epidemic of autism due tochildhood immunizations (Nelson & Bauman,2003; Murch et al., 2004; Offit & Jew, 2003).This leads to both suspicion of medicineand failure to understand that the prepon-derance of evidence supports the benefitof immunizations for the prevention of ill-ness in children with autism and preventingboth autism and severe disabilities in youngchildren. For example, without rubella vac-cine, the United States would experience


epidemics of congenital rubella. Prior to thisvaccine, as many as 11 000 fetal deaths and2000 neonatal deaths occurred because ofcongenital rubella. In addition, more than20 000 newborns were affected with the con-genital rubella syndrome (Goldston et al.,1986). The sequelae of this syndrome in-clude blindness in 10%, deafness in 50%,autism in 25%, as well as mental retarda-tion, epilepsy, and cerebral palsy (Chess,1978). Rubella vaccination prevents these epi-demics. Prior to measles vaccine, significantnumbers of children died from measles pneu-monia and measles encephalitis. In 1923,more than 10 000 deaths were reported in1 year because of measles. Between 1950and 1962, almost 500 children per year diedof measles (Goldston et al., 1986). In 1982,after a decade of immunization control ef-forts, there were 2 deaths. Approximately 1 in1000 children with measles develops measlesencephalitis and more than 50% have dev-astating long-term sequelae including autism(Benda, 1952). In an era where the promise ofneuroscience has not yet brought new restora-tive treatments, immunizations are the bestway to prevent both autism and other devel-opmental disabilities.

A MODEL FOR ASSESSING ENABLEMENTAMONG CHILDREN WITH ASDs

The World Health Organization (2001) pro-posed a strengths- and supports-based modelframework for describing individuals with dis-ability. The ICF model describes a child’shealth and well-being in terms of 4 compo-nents: (1) body structures, (2) body func-tions, (3) activities, and (4) participation.Body structures are anatomical parts of thebody, such as organs and limbs, as well asstructures of the nervous, sensory, and mus-culoskeletal systems. Body functions are thephysiological functions of body systems, suchas digestion and respiration, and also includepsychological functions such as attending, re-membering, and thinking. Activities are tasksdone by children, including learning, com-municating, walking, carrying, feeding, dress-

ing, toileting, and bathing. In older children,these tasks include reading, preparing meals,shopping, and washing clothes. Participationmeans involvement in community life, such asrelationships with peers, going to school, andrecreational activities.

The ICF model accounts for contextual fac-tors in a child’s life, including environmentaland personal factors. Environmental factorsinclude policy, social and physical facilitatorsand barriers, positive and negative attitudesof others, legal protections, and discrimina-tory practices. Personal factors include age,gender, interests, and sense of self-efficacy. Avariety of preschool scenarios using the ICFmodel are illustrated in Table 2 for preschoolchildren with ASD. These scenarios includea 1-year-old girl with infantile spasms sec-ondary to tuberous sclerosis complex, 2-year-old boy who is nonverbal with autism, a3-year-old girl with blindness and develop-mental regression, and a 4-year-old boy withfragile X syndrome, challenging behaviors,and autism. The ICF model explicitly mea-sures functional strengths, social role activity,community participation, and environmentalfacilitators.

THE SPECTRUM OF AUTISM ANDRELATED PERVASIVE DEVELOPMENTALDISORDERS

Over the past 50 years, autism has beendiagnosed using different labels and criteria.We currently support the term “ASD” toencompass the formal categorical diagnosesof autistic disorder, pervasive developmentaldisorder—not otherwise specified (PDD-NOS), and Asperger’s syndrome. Currently,the 2 standardized criteria for diagnosingthese ASDs, DSM-IV and ICD-10, are similar(Volkmar & Pauls, 2003). Core diagnosticfeatures include impairments in communi-cation and social interaction coupled withrestrictive and stereotyped patterns of be-havior, interests, and activities. Onset is inthe preschool years, with delays in languageunderstanding and use, delays in joint at-tention and nonverbal skills, symbolic play

260 INFANTS & YOUNG CHILDREN/OCTOBER–DECEMBER 2008T

ab

le2

.D

imen

sio

ns

of

fun

cti

on

ing

and

par

ticip

atio

n

1-y

-old

gir

lw

ith

seiz

ure

s3

-y-o

ldgir

lw

ith

au

tism

Dim

en

sio

n:D

efi

nit

ion

an

dau

tism

2-y

-old

bo

yw

ith

au

tism

an

dvis

ual

dis

ab

ilit

y4

-y-o

ldb

oy

wit

hau

tism

Path

ophys

iolo

gy:M

ole

cu

lar

or

bio

chem

ical

mech

anis

ms

inte

rferi

ng

wit

hcellu

lar

fun

cti

on

Infa

nti

lesp

asm

sat

6m

o,

tub

ero

us

scle

rosi

sco

mp

lex

“Pre

sum

ed

”m

isw

irin

go

f

neu

rolo

gic

alsy

stem

sin

volv

ed

inla

ngu

age,d

eve

lop

men

t,

and

co

mp

lex

beh

avio

ral

regu

lati

on

75

0g,

26

-wk

co

mp

lete

d

gest

atio

n,an

dse

vere

reti

no

pat

hy

of

pre

mat

uri

ty

Init

ially

wit

hh

ypo

ton

iaan

d

co

mm

un

icat

ion

dela

ys

Impa

irm

ent:

Lo

sso

fo

rgan

stru

ctu

reo

rfu

ncti

on

Recu

rren

tse

izu

res

Co

gn

itiv

e,co

mm

un

icat

ive,an

d

neu

rob

eh

avio

rald

ysfu

ncti

on

.

No

seiz

ure

s,n

oevid

en

ce

of

frag

ile

Xsy

nd

rom

e

Vis

ual

,co

gn

itiv

e,

co

mm

un

icat

ive,an

d

neu

rob

eh

avio

ral

dys

fun

cti

on

s

Fra

gile

Xsy

nd

rom

e

dia

gn

ose

dat

age

4

Fun

ctio

na

lch

allen

ges:

Dif

ficu

lty

perf

orm

ing

an

acti

vit

y

Lac

ko

fd

eve

lop

men

talp

rogre

ss,

un

able

tow

alk

or

talk

Dif

ficu

lty

wit

hre

cep

tive

and

exp

ress

ive

lan

gu

age

tran

siti

on

s,re

peti

tive

pla

y,

die

tary

rigid

ity

Dif

ficu

lty

wit

hru

nn

ing,

rest

ricte

dvis

ual

field

s,

no

nve

rbal

,se

lf-in

juri

ou

s

beh

avio

r

Dif

ficu

lty

wit

hac

tivit

y,eye

co

nta

ct

Fun

ctio

na

lst

ren

gth

s:Perf

orm

ing

acti

vit

ies

such

asru

nn

ing,d

ress

ing,

co

mm

un

icat

ing,p

layi

ng

Tra

nsf

ers

toys

,ro

lls,

lau

gh

sLo

ves

pla

ygro

un

dan

dm

usi

c

acti

vit

ies

Clim

bin

gC

arto

on

wat

chin

g,lo

ves

Th

om

asth

eTan

k

Dis

abil

ity:

Dif

ficu

lty

perf

orm

ing

acti

vit

ies

typ

ical

for

peers

Un

stead

yin

sitt

ing,u

nab

leto

cra

wl

Un

able

togo

tore

lati

ves

Specia

led

ucat

ion

sup

po

rts,

low

-vis

ion

aid

es,

bilat

era

l

ankle

-fo

ot

ort

ho

ses,

inte

nse

beh

avio

r

man

agem

en

tp

rogra

m

Qu

alit

yp

resc

ho

olse

rvic

es

and

beh

avio

ral

man

agem

en

t

Part

icip

ati

on

:Age

app

rop

riat

ero

les,

cho

res,

ho

bb

ies,

and

spo

rts

Mo

ther

has

tota

ke

off

fro

m

wo

rkfr

eq

uen

tly

becau

seo

f

child

’sse

izu

res

Lo

ves

swim

min

gw

ith

fath

er

at

YM

CA

Ho

rseb

ack

rid

ing

YM

CA

pla

ygro

up

Soci

eta

lli

mit

ati

on

s:A

ttit

ud

inal

,le

gal

,p

olicy,

and

arch

itectu

ralb

arri

ers

Heal

thm

ain

ten

ance

org

aniz

atio

nw

illn

ot

allo

w

mag

neti

cre

son

ance

imag

ing

or

refe

rral

toa

ped

iatr

ic

ep

ilep

sycen

ter

Fra

gm

en

tati

on

betw

een

ear

ly

inte

rven

tio

nis

tsan

dex

plicit

delive

rab

les

toen

han

ce

co

mm

un

icat

ion

.Lac

ko

f

full-d

ayex

ten

ded

3-y

-old

qu

alit

yp

rogra

ms

Lac

ko

fre

spit

ese

rvic

es

and

weeken

dsu

pp

ort

s

Becau

sem

oth

er

wo

rks

ou

tsid

eth

eh

om

e,sh

e

can

no

tat

ten

dge

neti

c

sup

po

rtgro

up

s

Con

text

ua

lfa

ctors

:En

vir

on

men

talb

arri

ers

No

ou

t-o

f-h

om

ed

aycar

e

avai

lab

lefo

rch

ild

wit

h

freq

uen

tse

izu

res

Fai

lure

toh

ave

co

mm

un

icat

ion

s

stra

tegie

sfo

rn

on

verb

al

child

ren

Ch

urc

hm

em

bers

req

uest

that

child

be

kep

tat

ho

me

du

rin

gse

rvic

es

Den

ied

life

insu

ran

ce

po

licy


difficulties (ie, pretend play), and difficultywith social interactions with parents andpeers. Although current reviews mandate amedical evaluation for autism (Committeeon Children With Disabilities, 2001b; Filipeket al., 2000), many children do not have anassociated or causative medical condition(Fombonne, 1999). The medical differentialdiagnosis of autism includes global develop-mental delay, developmental language disor-ders (DLDs), and severe sensori-neural hear-ing impairments. There are also many rareneurogenetic disorders that impact on highercortical functions including abstraction,problem solving, understanding viewpointsof others, information processing, and regula-tion of attention (eg, too short, too long, tooinflexible) (Rapin, 1997). In addition, among asubset of children with language regression, aspecific epilepsy pattern is present and calledthe Landau-Kleffner syndrome (Rapin &Katzman, 1998).

Some uncommon medical etiologies asso-ciated with autism include untreated PKU,tuberous sclerosis complex, retinopathy ofprematurity, congenital cytomegalovirus in-fection, and fragile X, Lesch Nyhan, andMoebius syndromes. In addition, severalgenetic disorders such as Down, Prader-Willi, Angelman, and Williams syndromes andDuchenne muscular dystrophy have higherrisks for ASDs. The lesson is not that all chil-dren with Down syndrome or Duchenne mus-cular dystrophy manifest behaviors consistentwith ASD, but that among individuals withdevelopmental and genetic vulnerability (ie,Down syndrome or Duchenne muscular dys-trophy), higher rates of classical autism arefound than the population prevalence of 1to 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 PRESCHOOLCHILDHOOD DISABILITIES

There are improved tools for early recogni-tion and increased awareness of the preschoolpresentation of children with ASDs. With

expanded definitions of the autistic spec-trum, there are more individuals who do nothave the classical comorbidities of mentalretardation/intellectual disability. By includ-ing Asperger’s disorder in the autism spec-trum, there is increased awareness of the so-cial skill and motor coordination impairmentsthat impact on school-aged children withlearning disorders. Lastly, including preschoolchildren with challenging behaviors and com-municative and attention disorders as childrenwith autistic spectrum disorder (PDD-NOS)substantially increases the number of childreneligible for accommodations (504 Plans) andspecial education services (individualized ed-ucation programs). Thus, to understand thechanging epidemiology of preschool commu-nicative, developmental, and neurobehavioraldisorders, one must understand the back-ground prevalence of communicative andcognitive disorders in early childhood.

Communicative impairments associatedwith developmental disabilities can be clas-sified in terms of severity (high, low) andprevalence (high, low) (Accardo, 2007). Im-pairments with high severity and low preva-lence include classical (Kanner’s) autism (1–2per 1000) and significant intellectual disabili-ties (IQ < 50–55) with a prevalence of 5 per1000. Those with low severity and high preva-lence include mild intellectual disabilities(30 per 1000), language disorders (100 per1000), and learning disabilities (70–100 per1000). It is because of these latter categoriesthat as many as 20% of school-aged childrenmay qualify for special education accom-modations. Mild intellectual disabilities aredefined as an IQ of 55 to 70, with adaptiveskills more than 2 SDs below the mean,and are often detected in kindergarten andearly elementary grades. These children areindependent in communication skills and allactivities of daily living. Reading and writingskills usually advance to a fifth-grade levelbefore leveling off. Children with moderateintellectual disabilities ultimately have IQsof 40 to 55 and present with preschool lan-guage delay that later is diagnosed as a morecomplicated disability. These children are


Table 3. Language skills among children with communicative disordersa

Developmental High-functioning Low-functioning

language disorder autistic disorderb autistic disorderc

Single wordsd 18 (8.3) 17 (10.5) 20.4 (13.1)

Phrasese 27.2 (9.4) 29 (11.7) 36 (16.3)

Intelligibility 30 (10.8) 29 (12.3) 30.6 (17.2)

1-Step commandse 23.4 (9.4) 33 (12.5) 37.4 (14.7)

aValues represent age in months with (SD).bNonverbal IQ > 80.cNonverbal IQ < 80.dSignificant difference between groups P < .05.eSignificant difference between groups P < .001.

independent in all activities of daily living andeventually able to communicate basic needsto a caregiver. The major sequelae of thisgroup of disorders are difficulty in complexacademics, especially in reading paragraphsand writing book reports. A key question is:What are the differences in diagnosis anddevelopmental outcomes among childrenwith cognitive, language, and ASDs?

Rapin led a multisite multidisciplinaryproject whose purpose was to investigate theneurobiologic basis of ASD and related com-munication disorders, provide a basis for ra-tional interventions, and improve the train-ing of professionals who educate and care forthese children (Rapin & Autism and LanguageDisorders Nosology Project, 1996). The co-hort involved 487 children aged 3 to 7 years.Developmental language disorder (DLD) waspresent in 41%, ASDs were present in 36%,and intellectual disability without autism waspresent in 23%. The children were furtherdivided into high-functioning autistic disor-ders (HADs; n = 51) and low-functioningautistic disorders (LADs; n = 125). The high-functioning group had nonverbal IQs greaterthan 80, whereas the low-functioning grouphad nonverbal IQs lower than 80. All childrenreceived a comprehensive assessment of neu-ropsychologic processes including language,nonverbal intelligence, adaptive behaviors,academic abilities, and neuromotor skills.Detailed histories of prenatal, perinatal, and

postnatal events; childhood illnesses; fam-ily illnesses; developmental milestones; andgrowth, physical, and expanded neurologicexaminations were noted.

Several findings were reported. The pres-ence of developmental disabilities in parentsand siblings was generally not a significantpredictor for DLDs or ASDs. However, in fami-lies where one child had an ASD, there was anincreased risk for other children to have eitherDLDs or intellectual disability. In a smallernumber of families with one child with ASD,there was a second child with this disorder.Neonatal problems were generally not predic-tive of ASD or significantly different betweenthe DLD and the ASD.

With respect to early developmental mile-stones, no child with a DLD or an ASD wasa late walker, defined as not walking inde-pendently at age 18 months. Late walking waspresent in 25% of children with global devel-opmental delay. Difficulty with pretend playat 36 months occurred in 25% of childrenwith DLDs, 49% of children with global de-velopmental delay, and 71% of children withASDs. By age 4, only 5% of children with DLDscould not engage in pretend play whereas1 in 6 (>15%) of high-functioning childrenwith autistic disorders and 1 in 6 childrenwith global developmental delays continuedto struggle with these play skills.

Table 3 illustrates that delays in com-municating in phrases and following 1-step


commands significantly differentiated chil-dren with ASD from children with DLD. Thesefindings also highlight why concerns aboutcommunicating in words and phrases and fol-lowing requests without gestures are key firstsigns for the early recognition of autism. Over-all, children with DLDs performed better inboth receptive and expressive language skillsthan children with ASD and low nonverbal in-telligence. These findings also suggest that en-hancing communication skills is one of thekey requirements for preschool interventions.

Rapin concluded that most prenatal, perina-tal, and postnatal events did not differentiatebetween DLDs, high-functioning ASD, autismwith intellectual disability, and mental retar-dation. Developmentally, 31% of the intellec-tual disability group and 56% of the autismgroup with nonverbal IQ less than 80 hadsignificantly low IQ scores (IQ < 50). Thisstudy replicated findings from the multicen-ter Collaborative Perinatal Project that peri-natal events do not play a strong causativerole in autism, intellectual disability, and DLDs(Nelson, 1991).

A DEVELOPMENTAL AND BEHAVIORALPERSPECTIVE

The role of healthcare professionals

Autism and ASDs have received a lion’sshare of public and media attention. Thereis also increased recognition that has con-tributed to higher clinical and administrativeprevalence rates over the past 2 decades. Al-though families and research scientists maydiffer on the root-causal pathways for thisincrease in prevalence (Baird et al., 2000;Fombonne, 2003) of children either diag-nosed or currently receiving specialized treat-ment for ASDs, it is timely that the primaryhealthcare professional assumes a leadershiprole in guiding and supporting families duringthe early diagnostic process.

Primary healthcare professionals, how-ever, face several obstacles. First, they areincreasingly called upon to screen for autismand other developmental disorders as partof the “well child” visits without adequate

infrastructure for time and reimbursementconsiderations (Dosreis, Weiner, Johnson,& Newschaffer, 2006). Second, althoughnational initiatives at the Center for DiseaseControl and Prevention (Autism InformationCenter) and policy statements (Committee onChildren With Disabilities, 2001b; Filipek etal., 2000) have recommended specific autismscreening tools and diagnostic standards (ICD10, DSM IV), so far very few publicationshave addressed the effectiveness of the imple-mentation of these strategies. Finally, becausethere is no laboratory or blood test for autism,the diagnosis remains open for subjectiveinterpretation of even formal diagnosticstandards. However, consensus exists thatexpert clinical judgment is more reliable thanalgorithm diagnosis in the youngest of chil-dren (Charman & Baird, 2002). These factorsseparately or in combination all serve to addobstacles and confuse the role pediatriciansand primary care providers play in the diag-nosis and management of ASDs (Committeeon Children With Disabilities, 2001b).

PRINCIPLES OF THE DIAGNOSTICASSESSMENT

Primary care providers can find guidepostsin this changing landscape by beginning withthe ICF strength-based framework and review-ing the principles of the early childhood di-agnostic assessment. One goal of this reviewis to provide a bridge for the primary careprovider as the information about the preva-lence, diagnosis, and optimal management ofASDs evolves.

Four converging factors regarding the diag-nosis of ASD highlights the importance of thisreview. Improved ability to diagnose ASDs atearlier ages (Lord, 1995; Moore & Goodson,2003) is linked with pressure to meet earlyintervention or school-based special educa-tion eligibility requirements and fueled byemerging information about the effectivenessof early identification and treatment (Lovaas,1987; McEachin, Smith, & Lovaas, 1993;Sheinkopf & Siegel, 1998). However, at thesame time, there is emerging and conflicting


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.

aAdapted from Greenspan and Meisels (1996).

information about the long-term stability andsensitivity of this early diagnostic process(Charman et al., 2005; Zwaigenbaum et al.,2006). It is not known which of these factorsplays the dominant influence in the unmetneeds experienced by children with ASD.

Our clinical experience has often remindedus that the primary healthcare provider is fre-quently the first to identify and respond to afamily’s developmental concern, and it is crit-ical they understand and play a central role inoverseeing the family’s successful negotiationof the evaluation process. Equally important,the primary healthcare provider plays an in-tegrative and educational role for the familyafter the diagnostic assessment is completedand when follow-up with the referral sourceis limited.

Based on the work of Meisels and the Zeroto Three Work Group on Developmental As-sessment, the principles of an optimal de-velopmental assessment that best serve thefamily and primary care provider have beensummarized in Table 4 (Greenspan & Meisels,1996; Meisels & Atkins-Burnett, 2000; Meisels& Shonkoff, 1990; Shonkoff & Meisels, 2000).

The best practice components of a devel-opmental assessment for young child withdelays in communication, social skills, and de-velopmental competencies should first con-tain multiple sources of information about thechild’s developmental progress and functionalcapacities. This requires that not only the par-ents but also the healthcare provider’s and,possibly, the day care provider’s concerns anddescription of the child’s strengths and weak-nesses be part of the diagnostic process. A pri-mary healthcare provider should be alarmedon behalf of the family when the referral diag-nostician does not solicit or accommodate thedevelopmental history and primary care per-spective of the child from the previous wellchild visits in the diagnostic assessment.

Second, primary healthcare providersshoulder the responsibility for increasedmandates for developmental screening forASD (Council on Children With Disabilities,Section on Developmental Behavioral Pedi-atrics, Bright Futures Steering Committee, &Medical Home Initiatives for Children WithSpecial Needs Project Advisory Committee,2006). This responsibility and role increases


the primary care provider’s part in thedevelopmental assessment process becausecollaborative and sequential assessmentsare central to any high-quality autism earlyidentification, assessment, and family supportmanagement program.

Third, as primary care providers andsystems of care become increasing adept inproviding a medical home for children withASD and other special healthcare needs, theyneed to join with the parents in identifying thechild’s current competencies and strengths aswell as the skills the child needs to develop tocontinue with his or her developmental pro-gression. Providing tips for “surviving yourchild’s developmental assessment” (SevenTips for Surviving Your Child’s Develop-mental Assessment assessed at http://www.zerotothree.org/site/PageServer?pagename=ter screen tips) is one way the primary careprovider can remain connected to parentsas they embark on the developmental diag-nostic process for their child and strive tomanage the child’s lifelong condition afterthe diagnostic assessment.

Finally, the ultimate goal of developmen-tal and diagnostic assessments appropriate forthe ICF strength-based model and the med-ical home is that no parents will suddenlyface as part of the diagnostic process the re-ality of uncovering a problem that they didnot suspected. When primary care fulfills itsideal role, parents are heard and supportedup to, during, and after any referral multi-disciplinary assessment. In addition, the pri-mary care provider plays an important rolefor the parents who have difficulty in relat-ing the initial behavioral or developmentalconcerns with the outcome of a diagnosis ofASD. Keeping the child and the child’s behav-ior as the central focus of the parent’s con-cern and the focus of the diagnostic processhelps parents recognize their child’s person-hood in the diagnosis process. The primarycare provider’s facilitation of parental obser-vations after the diagnostic process and un-derstanding the terms of the diagnosis of ASDis an invaluable support as parents adjust theirinternal view of their child (Baird et al., 2000).

Even when parents perceive the initial diag-nosis of ASD as unwarranted and premature,primary care providers can adopt the “work-ing diagnosis” perspective and join with thefamily to refine the diagnosis over time. It isin this context that the National Academy ofScience recommendations are most pertinent.This committee recommended that all chil-dren with any ASD, regardless of label or levelof severity, be eligible for special educationservices that comprehensively address social,cognitive, communicative, and learning skills.The therapeutic nature of this supported diag-nostic process for parents should not be un-derestimated (Parker & Zuckerman, 1990) be-cause it allows the introduction of structuredservices and for the priority of early interven-tion services to address communication andsocial skill challenges without driving parentsto risky and unproven alternative treatment(Hyman & Levy, 2005).

CAUTION ABOUT NONTRADITIONALTHERAPIES

Parents of children with autism are bar-raged with promises of miracle cures, drugtherapies, and nontraditional therapies tocure their child (Nickel, 1996; Tanguay, 2000).Many times, caregivers are willing to try any-thing to help their child. Nonethical promot-ers of nonscientific therapies use commonploys to seduce desperate parents into tryingtheir treatments. Some common approachesinclude exploiting the natural fear of disease,preying on the uncertainty about traditionalmedical care, promising painless and naturaltreatments, and claiming miraculous scientificbreakthrough and developmental cures.

One promise of a scientific breakthroughwas the use of secretin to cure autism. Acase study was reported in the literaturethat 1 dose of intravenous secretin costingmore than $1000 successfully eliminatedsymptoms in a child with autism (Horvathet al., 1998). Several scientific studies havebeen conducted since the original case study.One undertaken by Coniglio et al. (2001) in-volved children aged 3 to 10 years diagnosed


using DSM-IV criteria for autism. The goalwas to determine whether a single dose ofintravenously administered secretin couldimprove communication and socializationskills in children with autism. Subjects wererandomly divided into treatment and placebogroups. The Childhood Autism Rating Scaleand Preschool Language Scale–3 (PLS-3)were administered at baseline, 3 weeks, and6 weeks after treatment. In addition, caretak-ers completed the Parent Perception Surveyand the Gilliam Autistic Rating Scale andwere asked several study-specific questionsincluding “Do you believe your child receivedsecretin? Have you noticed any changes inyour child’s symptoms?” Results showed thatchildren who did not receive secretin mademore communicative, behavioral, and devel-opmental progress using these standardizedoutcome measures.

In another study, Sandler et al. (1999) ran-domly assigned 60 children aged 3 to 14 yearsto either a single treatment secretin groupor a placebo control group. DSM-IV criteriawere used to diagnose autism (Sandler et al.,1999). If autism criteria were not met, PDDwas diagnosed. Subjects were administeredthe Childhood Autism Rating Scale and theAutism Behavior Checklist at baseline and ata 4-week follow-up. Again, the children as-signed to the placebo treatment improved onthese behavioral measures more than the se-cretin group. To date, there have been sev-eral other secretin trials involving more than700 children with autism (Dunn-Geier et al.,2000; Lightdale et al., 2001; Owley & Steele,1999; Roberts et al., 2001). In no trial was se-cretin a miracle cure. However, in all trials, im-provement occurred over time in all childrenwith ASDs, thus demonstrating that all chil-dren with ASDs learn. Despite the lack of evi-dence for secretin’s therapeutic use and evenafter being presented the study’s negative re-sults, parents continued to ask the study doc-tors for ongoing secretin treatment.

Primary care professionals need to em-brace the passion parents demonstrate in theirsearch for supports to their afflicted child.Rather than a punitive remark or avoiding a

discussion about an alternative treatment, pri-mary healthcare professionals can play a pos-itive role by providing families valuable infor-mation to evaluate any alternative treatment.We have found some useful Web sites andhandouts to offer to families when contem-plating the complex issue of and risks associ-ated with alternative treatments.

1. http://www.asatonline.org/ (Associat-ion for Science in Autism Treatment,n.d.)

2. http://www.autismresearchnetwork.org/AN/default.aspx (National Institutes ofHealth Autism Research Network, 2007)

3. Parent handouts have been developed byThe Autism Program. These include:

a. Current Interventions in Autism—A Brief Analysis at http://www.theautismprogram.org/autismtreatments.asp (The Autism Program,n.d.-a)

b. Tips for Working With ChildrenWith Autism Spectrum Disordersat http://www.theautismprogram.org/tips.asp (The Autism Program,n.d.-d)

c. Top 10 Things to RememberWhen Working With Children WithAutism Spectrum Disorders athttp://www.theautismprogram.org/top10.asp (The Autism Program,n.d.-e)

d. Tips for Daily Life—Visitingthe Dentist at http://www.theautismprogram.org/dentist.asp(The Autism Program, n.d.-b)

e. Tips for Daily Life—Toilet Trainingat http://www.theautismprogram.org/toilet.asp (The Autism Program,n.d.-c)

ADMINISTRATIVE AND FUNDINGREALITIES

The primary healthcare provider, as thecentral figure in the medical home and be-cause of his or her unique training, interest,and commitment, is perfectly positioned to


understand and support the special family cir-cumstances that each family brings with achild who has developmental differences. Un-fortunately, Medicaid and private party payersdo not value this expertise or commitmentwith their reimbursement schemes. Primaryhealthcare providers, pediatricians, and nursepractitioners and family practice specificallyare best positioned to involve family mem-bers in planning the evaluation of a child’sdevelopment. They also foster respectfulcommunication between parents, referrals tosubspecialty physicians, and allied healthcareand educational professionals. Helping fami-lies integrate the different pieces of an assess-ment for ASDs (genetics, hearing, neurologic,and educational) is one valuable mandate ofthe medical home.

The American Academy of Pediatrics, andits national medical home initiative (AmericanAcademy of Pediatrics: The National Centerof Medical Home Initiatives for Children WithSpecial Needs, n.d.), has advocated a model ofprimary care delivery that keeps the primaryhealthcare professional central to the processof identification, family understanding, pro-fessional referrals, and diagnostic assessmentfor children with developmental differences.At the same time, this initiatives at theAmerican Academy of Pediatrics endeavors tofind political and legal avenues to address thenegative financial setbacks that most primarycare providers risk when they choose to main-tain this central role for their patients andfamilies. The American Academy of Pediatricshas a toolkit as well as updated brochuresto enhance the primary care provider’sskills (see www.aap.org). In addition, theNational Medical Home Autism Initiative atthe University of Wisconsin and the Maternaland Child Health Bureau (MCHB) is evidence,in part, of the way national organizations andfederal agencies are promoting and providingtechnical assistance to pediatric healthcareproviders who desire to work with otherpartners in the community to serve childrenwith autism (Fig. 1).

Adopting the ICF model with a strengths-and supports-based framework for describing

preschool children with ASD is a perfectmatch for primary healthcare professionals. Incollaboration with the larger community ofproviders, the key goal is to provide compre-hensive coordinated and compassionate carefor children and families faced with the chal-lenges of ASDs.

Building on the ICF framework of enable-ment, primary care providers will have thestructure to communicate with sensitivity andmutual respect information about the devel-opmental diagnosis, explain current medicalunderstanding of autism to families, and pro-vide ongoing family support. Only then willfamilies have the confidence to increase theirrequests to primary care providers for guid-ance about the range of traditional and non-traditional autistic-specific treatments avail-able. In addition, this framework allows thephysician to prioritize interventions that pro-mote child functioning and enhance familywell-being.

The blending of the ICF framework withinthe primary care structure of the medicalhome can serve to reveal the added valueof decreasing fears and stresses through ef-ficient parent-professional partnerships. Thisadded value reflects the teamwork of pro-fessional and nonprofessional office staff to-ward family-centered care management andenhanced communication. These models alsorecognize the wide range of differences inchallenges families of children with autismface and the increased time and effort re-quired for the ongoing monitoring of thechild’s progress and family adaptation.

CONCLUSION

The major need for families is to feel thattheir primary healthcare professional listensto their concerns and understands the multi-threaded information required for a diagnos-tic assessment. Parents also need to be contin-ually supported in accessing comprehensivesystems of early intervention and preschooleducation on behalf of their child. It is mostimportant to view ASD as a developmentaldisorder whereby interventions to enhance


Figure 1. National Medical Home Autism Initiative: Key functions and partners (Waisman Center, 2006).

communication, promote adaptive skills, andbuild on the child’s strengths occur. It is adangerous practice to assume that there is amagic bullet that will dramatically cause thechild to be suddenly typical. Unfortunately,the complexity of human language and the de-velopmental neurobiology of autism do no al-low for cures with injections of miracle drugsor nutrition supplements (Coury & Nash,2003; Ozonoff et al., 2003; Volkmar & Pauls,2003). Instead, ASD allows us to understandhow all children can benefit from comprehen-sive and quality supports that enhance com-munication, adaptive skills, and functional in-dependence at home and in the community. Ifthe parent or the child experience challengesthat are too demanding or out of control,they will not understand the current behaviorand educational technologies that can make a

difference (Rogers, 1998; Siegel, 1996, 2003;Smith, Eikeseth, Klevstrand, & Lovaas, 1997;Wetherby & Prizant, 2000; Wing, 2001). Therole of the physician is not to be an expert onall educational practices but to know the hardtask of parenting children who are motoricallyable but communicatively challenged and be-haviorally unpredictable. Attention to familystresses and daily management supports canmake a difference at home, school, and in thecommunity. In this way families can undertakethe multidimensional management strategiesthat promote functional, communicative, so-cial, and adaptive skills. They then can cele-brate with professionals the strengths of theirchild’s unique way of experiencing the worldand set goals that promote steps to indepen-dence, and when challenges persist, knowthey will not be abandoned.


REFERENCES

Accardo, P. J. (2007). Developmental disabilities ininfancy and childhood (3rd ed.). Baltimore: P.H.

Brookes.

American Academy of Pediatrics: The National Cen-

ter of Medical Home Initiatives for Children With

Special Needs. Retrieved July 10, 2007, from

http://www.medicalhomeinfo.org/

Anders, T. F., Gardner, C., Jr., & Gardner, S. E. (2003).

Professional-parent collaboration—The M.I.N.D. In-

stitute Model. In: S. Ozonoff, S. J. Rogers, & R. L.

Hendren (Eds.), Autism spectrum disorders—Aresearch review for practitioners (pp. 227–238).

Washington, DC: American Psychiatric Publishing

Inc.

Arnold, L. E., Aman, M. G., Martin, A., Collier-Crespin, A.,

Vitiello, B., Tierney, E., et al. (2000). Assessment in

multisite randomized clinical trials of patients with

autistic disorder: The Autism RUPP Network. Journalof Autism and Developmental Disorders, 30(2), 99–

111.

Association for Science in Autism Treatment. (n.d.). Re-

trieved July 16, 2007 http://www.asatonline.org

Baird, G., Charman, T., Baron-Cohen, S., Cox, A.,

Swettenham, J., Wheelwright, S., et al. (2000). A

screening instrument for autism at 18 months of age:

A 6-year follow-up study. Journal of the AmericanAcademy of Child and Adolescent Psychiatry, 39(6),

694–702.

Benda, C. E. (1952). Developmental disorders of men-tation and cerebral palsies. New York: Grune &

Stratton.

Bristol, M., McIlvane, W. J., & Alexander, D. (1998).

Autism research: Current context and future direc-

tion. Mental Retardation and Developmental Dis-abilities Research Reviews, 4(2), 61–64.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive de-

velopmental disorders in preschool children. TheJournal of the American Medical Association,285(24), 3093–3099. Comment in: The Journalof the American Medical Association, 2001 June

27;285(24):3141–3142; PMID: 11427145.

Charman, T., & Baird, G. (2002). Practitioner review:

Diagnosis of autism spectrum disorder in 2- and 3-

year-old children. Journal of Child Psychology andPsychiatry, 43(3), 289–305.

Charman, T., Taylor, E., Drew, A., Cockerill, H., Brown,

J.-A., & Baird, G. (2005). Outcome at 7 years of chil-

dren diagnosed with autism at age 2: Predictive valid-

ity of assessments conducted at 2 and 3 years of age

and pattern of symptom change over time. Journalof Child Psychology and Psychiatry, 46(5), 500–

513.

Chess, S. (1978). Behavioral consequences of congenitalrubella. St. Louis: CV Mosby.

Committee on Children With Disabilities. (2001a). The

pediatrician’s role in the diagnosis and management

of autistic spectrum disorder in children. Pediatrics,107(5), 1221–1226.

Committee on Children With Disabilities. (2001b). Tech-

nical report: The pediatrician’s role in the diagno-

sis and management of autistic spectrum disorder in

children. Pediatrics, 107(5), E85.

Coniglio, S. J., Lewis, J. D., Lang, C., Burns, T. G., Subhani-

Siddique, R., Weintraub, A., et al. (2001). A random-

ized, double-blind, placebo-controlled trial of single-

dose intravenous secretin as treatment for children

with autism. Journal of Pediatrics, 138(5), 649–

655.

Council on Children With Disabilities, Section on De-

velopmental Behavioral Pediatrics, Bright Futures

Steering Committee, & Medical Home Initiatives for

Children With Special Needs Project Advisory Com-

mittee. (2006). Identifying infants and young chil-

dren with developmental disorders in the medical

home: An algorithm for developmental surveillance

and screening. Pediatrics, 118(1), 405–420.

Coury, D. L., & Nash, P. L. (2003). Epidemiology and etiol-

ogy of autistic spectrum disorders difficult to deter-

mine. Pediatric Annals, 32(10), 696–700.

Dosreis, S. P. D., Weiner, C. L. B. S., Johnson, L., &

Newschaffer, C. J. P. D. (2006). Autism spectrum dis-

order screening and management practices among

general pediatric providers. Journal of Developmen-tal & Behavioral Pediatrics, 27(2), S88–S94.

Dunn-Geier, J., Ho, H. H., Auersperg, E., Doyle, D., Eaves,

L., Matsuba, C., et al. (2000). Effect of secretin

on children with autism: A randomized controlled

trial. Developmental Medicine & Child Neurology,42(12), 796–802.

Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T.,

Cook, E. H., Jr., Dawson, G., et al. (2000). Practice

parameter: Screening and diagnosis of autism: Re-

port of the quality standards subcommittee of the

American Academy of Neurology and the Child Neu-

rology Society. Neurology, 55(4), 468–479.

Fombonne, E. (1999). The epidemiology of autism: A re-

view. Psychological Medicine, 29(4), 769–786.

Fombonne, E. (2003). Epidemiological surveys of autism

and other pervasive developmental disorders: An up-

date. Journal of Autism and Developmental Disor-ders, 33(4), 365–382.

Fombonne, E., & Chakrabarti, S. (2001). No evidence

for a new variant of measles-mumps-rubella-induced

autism. Pediatrics, 108(4), E58.

Goldston, S. E., Gruenberg, E. M., & Lewis, C. (1986). Vac-cinating against brain syndromes: The campaignagainst measles and rubella. New York: Oxford Uni-

versity Press.

Greenspan, S., & Meisels, S. (1996). Toward a new

vision for the developmental assessment of infants

and young children. In: S. Meisels & E. Fenichel

(Eds.), New visions for the developmental


assessment of infants and young children(pp. 11–26). Washington, DC: Zero to Three.

Halsey, N. A. (2001). Safety of combination vaccines: Per-

ception versus reality. Pediatric Infectious DiseaseJournal, 20(11 Suppl.), S40–S44.

Halsey, N. A., Hyman, S. L., & Conference Writing Panel.

(2001). Measles-mumps-rubella vaccine and autistic

spectrum disorder: Report from the New Challenges

in Childhood Immunizations Conference convened

in Oak Brook, Illinois, June 12–13, 2000. Pediatrics,107(5), E84.

Horvath, K., Stefanatos, G., Sokolski, K. N., Wachtel, R.,

Nabors, L., & Tildon, J. T. (1998). Improved social

and language skills after secretin administration in pa-

tients with autistic spectrum disorders. Journal ofthe Association for Academic Minority Physicians,9(1), 9–15.

Hyman, S. L., & Levy, S. E. (2005). Introduction: Novel

therapies in developmental disabilities—Hope, rea-

son, and evidence. Mental Retardation and De-velopmental Disabilities Research Reviews, 11(2),

107–109.

Levy, S. E., & Hyman, S. L. (2002). Alternative/

complementary approaches to treatment of children

with autistic spectrum disorders. Infants & YoungChildren, 14(3), 33–42.

Lightdale, J. R., Hayer, C., Duer, A., Lind-White, C.,

Jenkins, S., Siegel, B., et al. (2001). Effects of intra-

venous secretin on language and behavior of children

with autism and gastrointestinal symptoms: A single-

blinded, open-label pilot study. Pediatrics, 108(5),

E90.

Lord, C. (1995). Follow-up of two-year-olds referred for

possible autism. Journal of Child Psychology andPsychiatry, and Allied Disciplines, 36(8), 1365–

1382.

Lovaas, O. I. (1987). Behavioral treatment and normal ed-

ucational and intellectual functioning in young autis-

tic children. Journal of Consulting and Clinical Psy-chology, 55(1), 3–9.

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term

outcome for children with autism who received early

intensive behavioral treatment. American Journal ofMental Retardation, 97(4), 359–72; discussion 373–

391.

Meisels, S. J., & Atkins-Burnett, S. (2000). The elements

of early childhood assessment. In J. P. Shonkoff &

S. J. Meisels (Eds.), Handbook of early childhood

intervention (pp. 231–257). New York: Cambridge

University Press.

Meisels, S. J., & Shonkoff, J. P. (1990). Handbook of earlychildhood intervention. New York: Cambridge Uni-

versity Press.

Moore, V., & Goodson, S. (2003). How well does early

diagnosis of autism stand the test of time? Follow-

up study of children assessed for autism at age 2 and

development of an early diagnostic service. Autism,7(1), 47–63.

Murch, S. H., Anthony, A., Casson, D. H., Malik, M.,

Berelowitz, M., Dhillon, A. P., et al. (2004). Retrac-

tion of an interpretation. Lancet, 363(9411), 750.

National Institutes of Health Autism Research Net-

work. (2007). Retrieved July 16, 2007, from http://

www.autismresearchnetwork.org/AN/default.aspx

National Research Council Committee on Educational In-

terventions for Children With Autism. (2001). Edu-cating children with autism. Washington, DC: Na-

tional Academies Press.

Nelson, K. B. (1991). Prenatal and perinatal factorsin the etiology of autism. Elk Grove Village, IL:

American Academy of Pediatrics.

Nelson, K. B., & Bauman, M. L. (2003). Thimerosal and

autism? Pediatrics, 111(3), 674–679.

Nickel, R. E. (1996). Controversial therapies for young

children with developmental disabilities. Infants &Young Children, 8(4), 29–40.

Offit, P. A., & Jew, R. K. (2003). Addressing parents’ con-

cerns: Do vaccines contain harmful preservatives, ad-

juvants, additives, or residuals? Pediatrics, 112(6),

1394–1401.

Owley, T., & Steele, E. (1999). A double-blind, placebo-

controlled trial of secretin for the treatment of autis-

tic disorder. Medical General, 6, E2.

Ozonoff, S., Rogers, S. J., & Hendren, R. L. (2003). Autismspectrum disorders: A research review for practi-tioners. Washington, DC: American Psychiatric Pub-

lishing Inc.

Parker, S., & Zuckerman, B. (1990). Therapeutic aspects

of the assessment process. In S. J. Meisels (Ed.),

Handbook of early childhood intervention (pp.

350–370). New York: Cambridge University Press.

Rapin, I. (1997). Autism. The New England Journal ofMedicine, 337(2), 97–104. See comment in: TheNew England Journal of Medicine. 1997 November

20;337(21):1555–1556; author reply 1556–1557;

PMID: 9380125.

Rapin, I., & Autism and Language Disorders Nosology

Project. (1996). Preschool children with inadequatecommunication: Developmental language disor-der, autism, low IQ. London: MacKeith.

Rapin, I., & Katzman, R. (1998). Neurobiology of autism.

Annals of Neurology, 43(1), 7–14.

Renty, J., & Roeyers, H. (2006). Satisfaction with formal

support and education for children with autism spec-

trum disorder: The voices of the parents. Child: Care,Health and Development, 32(3), 371–385.

Roberts, W., Weaver, L., Brian, J., Bryson, S., Emelianova,

S., Griffiths, A. M., et al. (2001). Repeated doses

of porcine secretin in the treatment of autism:

A randomized, placebo-controlled trial. Pediatrics,107(5), E71. See comment in: Evidence-Based Men-tal Health. 2002 February;5(1):22; PMID: 11915825.

Rogers, S. J. (1998). Neuropsychology of autism in young

children and its implications for early intervention.

Mental Retardation and Developmental Disabili-ties Research Reviews, 4(2), 104–112.


Sandler, A. D., Sutton, K. A., DeWeese, J., Girardi, M.

A., Sheppard, V., & Bodfish, J. W. (1999). Lack of

benefit of a single dose of synthetic human se-

cretin in the treatment of autism and pervasive de-

velopmental disorder. The New England Journal ofMedicine, 341(24), 1801–1806. See comments in:

The New England Journal of Medicine. 1999 De-

cember 9;341(24):1842–1844; PMID: 10588973, and

The New England Journal of Medicine. 2000 April

20;342(16):1216–1217; author reply 1218; PMID:

10777377 and PMID: 10777376 C (TRUNCATED).

Sheinkopf, S. J., & Siegel, B. (1998). Home-based behav-

ioral treatment of young children with autism. Jour-nal of Autism and Developmental Disorders, 28(1),

15–23.

Shonkoff, J. P., & Meisels, S. J. (2000). Handbook of earlychildhood intervention. New York: Cambridge Uni-

versity Press.

Siegel, B. (1996). The world of the autistic child: Under-standing and treating autistic spectrum disorders.New York: Oxford University Press.

Siegel, B. (2003). Helping children with autism learn:Treatment approaches for parents and profession-als. New York: Oxford University Press.

Smith, T., Eikeseth, S., Klevstrand, M., & Lovaas, O. I.

(1997). Intensive behavioral treatment for preschool-

ers with severe mental retardation and pervasive de-

velopmental disorder. American Journal of MentalRetardation, 102(3), 238–249.

Szatmari, P. (2003). The cause of autism spectrum

disorders. British Medical Journal, 326, 173–

174.

Tager-Flusberg, H., Joseph, R., & Folstein, S. (2001). Cur-

rent directions in research on autism. Mental Re-tardation and Developmental Disabilities ResearchReviews, 7(1), 21–29.

Tanguay, P. E. (2000). Pervasive developmental disorders:

A 10-year review. Journal of American Academy ofChild Psychology, 39(9), 1079–1095.

The Autism Program (n.d.-a). Current interventionsin autism—A brief analysis. Retrieved July 16,

2007, from http://www.theautismprogram.org/

autismtreatments.asp

The Autism Program. (n.d.-b). Tips for daily life—Visiting the dentist. Retrieved July 16, 2007, from

http://www.theautismprogram.org/dentist.asp

The Autism Program. (n.d.-c). Tips for daily life—Toilet training. Retrieved July 16, 2007, from

http://www.theautismprogram.org/toilet.asp

The Autism Program. (n.d.-d). Tips for working withchildren with autism spectrum disorders. Retrieved

July 16, 2007, from http://www.theautismprogram.

org/tips.asp

The Autism Program. (n.d.-e). Top 10 things to re-member when working with children with autismspectrum disorders. Retrieved July 16, 2007, from

http://www.theautismprogram.org/top10.asp

Volkmar, F. R., & Pauls, D. (2003). Autism. Lancet,362(9390), 1133–1141. Erratum in: Lancet. 2004

January 17;363(9404):250.

Waisman Center. (2006). National Medical HomeAutism Initiative. Retrieved July 2, 2007, from

http://www.waisman.wisc.edu/nmhai/FRAMEWORK.

HTML

Wetherby, A. M., & Prizant, B. M. (2000). Autism spec-trum disorders: A transactional developmental per-spective. Baltimore: P.H. Brookes.

Wing, L. (2001). The autistic spectrum: A parents’ guideto understanding and helping your child. Berkeley,

CA: Ulysses Press.

World Health Organization. (2001). International Classi-fication of Functioning, Disability and Health: ICF.

Geneva: Author.

Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg,

N., Boyle, C., & Murphy, C. (2003). Prevalence of

autism in a US metropolitan area. Journal of theAmerican Medical Association, 289(1), 49–55.

Zwaigenbaum, L. M. D., Bryson, S. P. D., Roberts, W. M.

D., Brian, J. P. D., Szatmari, P. M. D., & Smith, I. P. D.

(2006). Stability of 18-month diagnostic assessment

for autism. Pediatric Academic Societies, E-PSA59,

5425.1.

Current articles- http://depts.washington.edu/isei/iyc/iyc_comments.html

articol autism

Documents