First STEP: A Model for the Early Identification of Children with Autism Spectrum Disorders

First STEP: A Model for the Early Identification of Children with Autism Spectrum Disorders
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  First S.T.E.P.:  A Model for the Early Identification ofChildren With Autism Spectrum Disorders   Journal of Positive Behavior Interventions Volume 7,Number 4,Fall 2005,pages 247–252 Lynn Kern Koegel,Robert L.Koegel,Nicolette Nefdt,Rosy Fredeen,Eileen F.Klein,Yvonne E.M.Bruinsma University ofCalifornia,Santa Barbara 247 Even though children with autism spectrum disorder(ASD) can be reliably identified by autism experts at 18months (Baron-Cohen,Allen,& Gillberg,1992),and themajority ofparents report symptoms before age 2 (Bagh-dadli,Picot,Pascal,Pry,& Aussilloux,2003),the averageage ofdiagnosis for children with autism in the UnitedStates is 3 to 4 years ofage (Filipek et al.,1999).Early iden-tification is especially vital given the growing amount of research documenting the significant positive effects of early intervention (Connor,1998;Koegel,Koegel,Frea,&Smith,1995;Lovaas,1987;Rogers,1998).In particular,re-search suggests the likelihood ofa more positive develop-mental trajectory the earlier intervention begins (Koegel,Bruinsma,& Koegel,in press).The Autism Research and Training Center (ARTC)has developed a model,Project First S.T.E.P.(First Screen-ing,Training,Education,Project),which is funded by First 5 ofSanta Barbara County and is designed to addressthe apparent delays in identification ofchildren at risk forASD.The project is part ofa larger initiative to increaseservices (e.g.,early mental health,dental,school readiness)for families ofyoung children.Our goal is to increase theearly identification ofchildren with ASD by raising aware-ness and providing access to services,in addition to assur-ing that identified children and their families receive early intervention and support services.First S.T.E.P.has devel-oped a three-part package to accomplish these goals.Thesethree components—Outreach,Screening,and Family sup-port—will be discussed in more detail in this article. Outreach The goal ofthe outreach component ofthe program is toincrease the knowledge and awareness among pediatri-cians,health-care workers,educators,parents,and com-munity members ofthe early behavioral symptoms ofASDto ensure early identification ofchildren at risk for ASD sothey can receive specialized services.This outreach is donethrough community presentations,advertising campaigns,and participation in family-oriented community events. EDITORS’ NOTE: The Forum section ofthe Journal ofPositiveBehavior Interventions is presented to encourage communicationamong readers and provide for an exchange ofopinions,perspec-tives,ideas,and informative personal accounts.We welcome brief articles from family members,professionals,friends,advocates,ad-ministrators,researchers,and other individuals who are concerned with behavioral support issues.The purpose ofthe Forum is to fa-cilitate a constructive dialogue among many stakeholders regarding important issues in practice,research,training,program develop-ment,and policy.Submissions to the Forum undergo an expedited review and may be submitted to either editor.Positive behavior support focuses on strategies for producing comprehensive and durable improvement in the lives ofchildrenand their families.This forum article outlines an innovative model  for helping families build the skills to establish and sustain commu-nication gains for young children with autism.The emphasis is ona “whole family”intervention approach,and the changes that occur are not just with specific child skills but with the ability ofthe whole family to be more successful.The message ofthis forum article will be ofparticular value for JPBI readers.  at UNIV CALIFORNIA SANTA BARBARA on August 14, 2015pbi.sagepub.comDownloaded from   PEDIATRICIAN PRESENTATIONS Pediatricians and their staffare targeted as primary out-reach recipients due to their frequent access to infants andtoddlers.Research has noted that most parents who haveconcerns about their child’s development first take theirchild to their pediatrician.In the past,however,pediatri-cians have been reluctant to refer children for evaluationsdue to concerns about misdiagnosis,creating unnecessary anxiety,and a lack ofinformation about behavioral symp-toms ofconcern and/or available services (Woods &Wetherby,2003).With the goal ofincreasing referrals fromthe pediatric community,specific presentations for thispopulation are developed to target variables that poten-tially contribute to the overall reluctance ofreferring chil-dren with developmental delays.Furthermore,to facilitateaccess to pediatricians,who tend to be very busy,presenta-tions are scheduled during pre-existing training times andcomplimentary lunches are provided.To update pediatricians’training regarding atypicalchild development,current research on the early charac-teristics ofautism and a review oftypical development isorganized into the three affected areas:social,communica-tion,and behavior.To facilitate the organization ofthe pre-sentation and the saliency ofthe information,videoexamples ofeach affected area ofautism are presented.Doing so enables us to accomplish two objectives:first,weare able to emphasize the range ofsymptoms exhibited by very young children at risk for ASD;second,we are able tostress the importance ofthe absence ofspecific typical be-haviors.That is,rather than showing children with classicsymptoms such as hand flapping or spinning objects,weinclude video examples ofchildren who exhibit a severelack oftypical social and communicative behaviors.Forexample,there may be a video clip ofa parent trying to en-gage their child who is playing with a toy.During the videoclips,we point out how the child does not respond to hisor her name being called,does not point or babble,anddoes not use eye gaze appropriately to share enjoyment asa typically developing child would do at that same age.The presentations also attend to the reluctance ofpe-diatricians to address developmental concerns,in case they are mistaken about considering autism,which could un-necessarily alarm parents.Specifically,we take into accountthat there may be tremendous anxiety about providing po-tentially incorrect diagnostic information about a child.Therefore,we work to assure pediatricians that they canrefer a child without making a formal decision ofwhetherautism is present or not and that they can suggest the pro- ject to families as a screening to assess their child’s devel-opmental level and to determine iffurther evaluationswould be warranted.Last,it is particularly important to inform pediatri-cians ofthe availability ofintervention services and theimpact ofsuch services on treatment outcomes for chil-dren with autism.This is accomplished by describingresearch-based outcomes for children with autism whohave had intervention.Additionally,intervention data dem-onstrating changes in communication scores toward amore typical developmental trajectory are presented.Thisis done to emphasize that children with ASD who are pro-vided with early intervention have the potential ofmakingsignificant improvements in the symptoms ofthe disabil-ity.Since specifically targeting outreach to the pediatriccommunity,in only 1 year we have seen a dramatic in-crease in the number ofreferrals from pediatricians and aclear reduction in the average age ofthe children referredto Project First S.T.E.P.,with the youngest child being 10months old (see Figures 1 & 2).Targeting pediatricians andrelated health-care professionals,such as office staffandnurses,appears to be vital in decreasing the age ofreferralfor very young children with ASD. ADVERTISEMENT CAMPAIGN Additional methods ofoutreach that are successful includethe use ofmedia outlets (e.g.,radio announcements,news-paper ads,slides in movie theaters),mass mailings of posters and brochures (to pediatrician offices,preschools,daycares,and mental health organizations),and atten-dance at family-oriented community events.It is impor-tant to note that delays in communication are the focus of the advertisement campaign.Specifically,all newspaperads,movie slides,posters,and brochures state,“Ifyourchild is 18 months or older and not talking,call for a freescreening.”The presence ofa communication delay was se-lected as the targeted symptom,because parents and prac-titioners can easily determine ifa child is not verbally communicating by the typical age ofonset for spoken lan-guage (approximately 12–18 months).In addition to tradi-tional advertising,First S.T.E.P also conducts outreach by attending community fairs and festivals to provide infor-mation for families and to network with other community agencies that serve young children. Screenings The following section highlights the screening componentofthe program,including basic operations and assessmentprocedures.The screening process begins when a family contacts us,following a referral from a pediatrician,teacher,community agency,or self-referral.During thisfirst phone contact,parents are asked about demographicsfor and concerns about their child.This is followed by aclear description ofthe screening process,and the parent isinformed that there will be no “formal”testing and thattheir child will not be required  to participate in any unde-sired activity.This is done to prevent any potential anxiety  248  Journal of Positive Behavior Interventions  at UNIV CALIFORNIA SANTA BARBARA on August 14, 2015pbi.sagepub.comDownloaded from   249 Figure 1. The number of referrals from pediatricians for both children with autism spec-trum disorders and children with other disabilities increased between 2003 and 2004. Figure 2. The average age of children with autism spectrum disorders and children withother disabilities who were referred to Project First S.T.E.P. decreased between 2003 and2004, with the youngest child being 10 months old.    P  e  r  c  e  n   t  a  g  e  o   f   R  e   f  e  r  r  a   l  s   T   h  a   t   W  e  r  e   F  r  o  m   P  e   d   i  a   t  r   i  c   i  a  n  s   M  o  n   t   h  s 2003 2004ASD2003 2004Other Disability2003 2004ASD2003 2004Other Disability  at UNIV CALIFORNIA SANTA BARBARA on August 14, 2015pbi.sagepub.comDownloaded from   about participating in the screening process.Finally,anattempt is made to schedule an appointment no later thana week from the initial phone call.Again,this is done to re-lieve any anxiety the parent may be experiencing (Siegel,Pliner,Eschler,& Elliot,1988) and to reduce the length of time before the child can access services.Once the initial contact has been made and an ap-pointment scheduled,the actual screenings are conductedat the ARTC and are attended by the primary caregiver,thechild ofconcern,and,sometimes,additional family mem-bers.To accommodate families who are unable to travel tothe ARTC,screenings are also conducted at the homes of families or at community agencies and clinics.Such off-sitescreenings are particularly helpful for many families fromremote farming areas or without means oftransportation,families often most under-reached and under-served.Regardless ofthe screening site,screenings are con-ducted by two advanced doctoral students studying eitherspecial education or clinical psychology.Both have ad-vanced training in applied behavioral analysis,several years ofexperience providing education to parents ofchil-dren with autism,several years ofexperience in testing anddiagnosis ofautism and related disabilities,and an in-depth knowledge ofthe literature regarding early charac-teristics ofASD.In addition,all sessions are videotaped,and the tapes are reviewed by two PhD-level supervisorsspecializing in autism.The screening appointment begins with an introduc-tion to the child (e.g.,playing with the child,identifyingpreferred objects and activities) and the completion ofpa-perwork (e.g.,consent forms,grant agency forms,an ini-tial intake form) by the parent.The intake form inquiresabout parent concerns in the areas ofsocialization,com-munication,and behavior and also includes other moregeneral questions about their child’s development,theirchild’s first symptoms,and their referral process.Consis-tent with the literature,the majority ofthe parents reportthat the first symptom they noticed was a lack of,or ab-normal,speech development (Siegelet al.,1988).Upon completion ofnecessary paperwork,parentsare asked to play with their child for 10 minutes as they would typically do so at home.This play interaction isvideotaped and is helpful in observing specific parent–child interactions and assessing the child’s communicativeand social behaviors.Following this initial play interaction,parents are interviewed about their child’s developmentand concerns using the Vineland Adaptive Behavior Scales (Sparrow et al.,1984).Then,behavioral observations anddirect behavioral presses ofthe child are conducted usinga protocol that incorporates items from the  Modified Checklist for Autism in Toddlers (M-CHAT;Robins et al.,2001),the  Autism Diagnostic Observation Schedule (ADOS;Lord et al.,1989),and the Diagnostic and Statistical Man-ual ofMental Disorders–Fourth Edition–Text Revision ( DSM-IV-TR ;American Psychiatric Association,2000).Behavioral observations and presses are conducted by theadvanced doctoral students.In particular,the aforementioned behavioral-assess-ment protocol is composed ofitems that assess behaviorsfrom each ofthe three diagnostic areas:(a) qualitative im-pairments in reciprocal social interaction,(b) qualitativeimpairments in communication,and (c) restricted,repeti-tive,and stereotyped patterns ofbehavior,interest,or ac-tivity ( DSM-IV  - TR ).In addition to probes designed toassess the three diagnostic areas ofautism,the protocol fo-cuses on areas known to be predictive ofautism spectrumdisorders,such as a lack ofappropriate joint attention be-haviors (e.g.,eye gaze alternation between a communica-tive partner and an object/activity ofinterest,showing,pointing),which has consistently been related to the devel-opment ofASD (Mundy,Sigman,Ungerer,& Sherman,1986).Consequently,one ofthe probes administered dur-ing the screening is a task in which the clinician blows bub-bles for the child,periodically pausing before resumingblowing to provide the child with opportunities to engagein joint attention behaviors to comment or request (e.g.,gaze alternation,pointing;Lord et al.,1989).Once all observational and reported data are col-lected,the clinicians decide ifthe child demonstratessymptoms that may put him or her at risk for ASD.Theclinicians then provide the family with specific clinical im-pressions ofthe child’s strengths and weaknesses as appli-cable to the three areas associated with ASD and in regardto any other developmental delay.The clinicians specifi-cally emphasize the strengths and potential ofthe child inan effort to provide hope for the family.Based on this in-formation,the family is referred to an appropriate agency for intervention ifthe child exhibits risk factors for ASD orother developmental delays.Subsequent to the screening,the family is given a follow-up call approximately 1 week later.This is done to further help the parent access appro-priate services.In addition,a letter is sent to relevant stateagencies to help speed up the process ofbeginning inter-vention,and a letter is sent to the referring pediatrician oragency regarding the results ofthe screening. Family Support Because families coping with autism or developmental de-lays undergo considerable stress,especially at the time of diagnosis,another important component ofthe project isthe family support package.This includes helping childrenand their families access early appropriate intervention.As discussed above,family support begins during thefirst phone conversation when a substantial effort is madeto assure that the family feels welcomed and at ease withthe process.In addition,the parent is provided with an op-portunity to describe their concerns in detail,and all ques-tions and concerns are answered empathetically andhonestly.There is also a clear message to parents that they  250  Journal of Positive Behavior Interventions  at UNIV CALIFORNIA SANTA BARBARA on August 14, 2015pbi.sagepub.comDownloaded from   Volume 7,Number 4,Fall 2005  251 are the expert on their child and that the project staffarethere to help them access services and to improve upon theexcellent care that they were already providing for theirchild.Information that is gathered via parent report is,infact,considered important and valid because researchshows that parents are very keen evaluators oftheir chil-dren’s development (Glascoe,1998;Glascoe & Dworkin,1995). REFERRAL AND RECOMMENDATIONS After the screening,all data and information are reviewedwith the directors ofthe program.Once this is done,thechild’s parents are given a follow-up call and provided withany additional feedback.All feedback is provided with ex-treme sensitivity and awareness ofpotential parental con-cerns and time is taken to again answer questions.Duringthis follow-up call,we also assure that the parent has allnecessary referral information.Most parents are usually successful at connecting with an intake coordinator toschedule an evaluation appointment.However,in caseswhere parents are having difficulty connecting with thereferral agency and obtaining appropriate appointments,we directly contact the agency chosen by the parent to helpfacilitate the process.Furthermore,a briefscreening reportis written for all referred children and sent to the agency to which we refer them.This report is also given to theparent. CASE MANAGEMENT To assure that children and families receive appropriate ac-cess to intervention services in the community,their casesare followed for a period oftime.To ease the entry into theservice delivery system,families are also encouraged to callwith any questions or updates about their child.Consistentwith research,this is an important step in reducing anxiety and depression in parents dealing with the initial stages of learning that their child may have a severe disability (Ran-dall & Parker,1999).It is important to note that many fam-ilies maintain contact until their child begins receivingservices,and some continue to call with specific questionsfor years after the screening. WORKSHOPS An important component ofour support package is the 2-hr parent education workshop,which is offered (at nocost to the family) to all children who exhibit a devel-opmental delay.Workshops are scheduled immediately,usually occur within a month ofthe screening,and aretypically conducted in the child’s home.The workshopshave two objectives:to teach parents procedures to acceler-ate their child’s communicative development and to bridgethe time between initial identification ofa developmentaldelay and the start ofspecialized support services.Prelim-inary data suggest that even such short workshops can pro-duce substantial improvements in both parent and child.For example,data suggest that parents are able to learnstrategies for teaching language and children are able tomake progress in their communication development.During each workshop,the parents are provided withmanuals that describe the specific techniques ofpivotal re-sponse treatment (PRT;Koegel,Koegel,Bruinsma,Brook-man,& Fredeen,2003;Koegel et al.,1989) to teach firstwords,and the PRT principles are reviewed.Modeling andspecific feedback are used to teach efficient implementa-tion ofPRT.As mentioned above,these briefworkshopsappear to be a helpful way to start teaching parents strate-gies for improving expressive communication use in theirchildren,in that most ofthe children begin to show im-provement during the first 2 hours and continue to show increases in both total number and diversity offunctionalverbalizations at follow-up.These workshops are an essen-tial and critical component ofthe family-support packagebecause they empower parents with immediate strategiesto address their child’s challenges.More important,par-ents are given an opportunity to see their child learningand succeeding,providing renewed hope for their child’sfuture. Conclusion The primary focus ofthis project is to decrease the age atwhich children with ASD are identified and receive early intervention.To accomplish this goal it is vital to raisecommunity awareness ofthe early signs ofautism.Specif-ically,we have found that targeting pediatricians is an ef-fective means ofreaching the desired goal ofidentifyingvery young children with ASD (see Figure 1).Prior to FirstS.T.E.P.,data for the state ofCalifornia suggested childrendid not receive services until age 4 or 5 (M.I.N.D.Institute,2002).However,with the creation ofFirst S.T.E.P,the av-erage age ofchildren screened at the ARTC and later diag-nosed as having autism has been reduced to 29 months(range,16 months–55 months;see Figure 2).Further,fam-ilies are receiving the family support package to target theirstress and increase their skills in working with their chil-dren.Last,the families are connected with establishedcommunity-based interventions and support agencies.Aswe look to the future,it is hoped that similar models canbe replicated nationwide to decrease the average age ofdi-agnosis at a national level so that more and more childrenwith ASD receive early intervention services as soon aspossible. ABOUT THE AUTHORS  Lynn Kern Koegel   ,PhD,is the clinic director ofthe AutismResearch and Training Center at the Gevirtz Graduate  at UNIV CALIFORNIA SANTA BARBARA on August 14, 2015pbi.sagepub.comDownloaded from 
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