Navigating Autism Diagnosis - Cigna

CHANGING THE WORLD FOR CHILDREN WITH AUTISMTMNavigating Autism DiagnosisLindsay Birchfield, M.S. BCBA, LBA1

Review DevelopmentalMilestonesIdentify Signs of AutismOBJECTIVESDiscuss Screening andEvaluation ProcessShare Treatment andSupport ServiceOptions2

Signs ofDelayedMilestoneDevelopmentBy 6 months: Nobig smiles orother warm,joyfulexpressionsBy 12months: Noback-and-forthgestures, suchas pointing,showing,reaching, orwavingBy 9 months: Noback-and-forthsharing ofsounds, smiles,or other facialexpressionsBy 12months: Lack ofresponse tonameBy 16months: Nospoken wordsBy 12months: Nobabbling or“baby talk”By 24months: Nomeaningful twoword phrasesthat don’tinvolve imitatingor repeating

Failure to respond to speech or social cuesDifficulty with demonstrating gesturesWhat aresomecommonsigns ofAutism?Difficulty with shifting eye gazeNo response or inconsistent response to nameInappropriate toy playInability to relate to othersDifficulty dealing with changes to routineStrange or odd interest in objectsOversensitive or under sensitive to environmental stimuli4

Autism SpectrumDisorder (ASD) Neurological disorder that impacts thebrain and subsequent behaviors andcommunication. Jeste, Spurling, Shafali, (April2012), The Neurology of Autism Spectrum Disorders5

Diagnostic Criterion: 1. Difficulties in social emotional reciprocity, including troublewith social approach, back and forth conversation, sharinginterests with others, and expressing/understanding emotions. 2. Difficulties in nonverbal communication used for socialinteraction including abnormal eye-contact and body languageand difficulty with understanding the use of nonverbalcommunication like facial expressions or gesturesfor communication. 3. Deficits in developing and maintaining relationships with otherpeople (other than with caregivers), including lack of interest inothers, difficulties responding to different social contexts, anddifficulties in sharing imaginative play with others.6

Level 1Requiring very substantial supportSocial Communication: Severe deficits in verbal andnonverbal socialcommunication skills causesevere impairments infunctioning, very limitedinitiation of social interactions,and minimal response to socialovertures from others.Restricted, repetitivebehaviors: Inflexibility of behavior,extreme difficultly coping withchange, or otherrestricted/repetitive behaviorsmarkedly interfere withfunctioning in all spheres. Greatdifficulty changing focusor action.Level 2Level 3Requiring substantial support Requiring SupportSocial Communication: Marked deficits in verbal andnonverbal socialcommunication skills; socialimpairments apparent evenwith supports in place; limitedinitiation of social interactions;and reduced or abnormalresponses to social overturesRestricted, repetitivebehaviors: Inflexibility of behavior,extreme difficultly coping withchange, or otherrestricted/repetitive behaviorsappear frequently enough tobe obvious to the casualobserver and interfere withfunctioning in a variety ofcontexts. Distress and/ordifficulty changing focusSocial Communication: Without supports in place,deficits in social communicationcause noticeable impairments.Difficulty initiating socialinteractions, and clear examplesof atypical or unsuccessfulresponse to social overtures ofothers. May appear to havedecreased interest insocial interactions.Restricted, repetitivebehaviors: Inflexibility of behavior causessignificant interreference withfunctioning in one or morecontexts. Difficultly switchingbetween activities. Problems oforganization and planninghamper independence.7

RatesAccording to the CDC ASDoccurs in 1 in 59 childrenIncreases in rates due, inpart, to changes in diagnosticclassification over the yearsfrom the DSM III to DSM 5.Prevalence of ASD in girls andracial/ ethnic minorities appearsto be underestimated (thesesubgroups tend to receiveformal diagnoses later in life ornot at all)More evolved diagnosticinstruments, includingcapturing younger children8

ScreeningTools:MCHATSTATScreeningToolsPEDSASQ Screening tools are designed to help identifychildren who might have developmental delays. Screening tools can be specific to a disorder(Autism) or they may be general, encompassingmultiple areas of concern. Screening tools are not designed to provide aconfirmatory diagnosis. Comprehensive testing should follow positivescreening results, could also be necessary afternegative results. The American Academy of Pediatrics (AAP)recommends that all children be screened fordevelopmental delays and disabilities duringregular well-child doctor visits at:18, 24 & 30 months.9

There are many different developmental screening tools.CommonScreening Tools CDC does not approve or endorse any specific tools forscreening purposes. This list is not exhaustive, and other testsmay be available. Examples: Modified Checklist for Autism in Toddlers (MCHAT)Ages & Stages Questionnaire (ASQ)Parents Evaluation of Developmental Status (PEDS)Screening for Autism in Toddlers (STAT)

Parents’ Evaluation of Developmental Status (PEDS) General developmental screening tool. Parent, single-response interview form May be used as a surveillance tool Modified Checklist for Autism in Toddlers (MCHAT)Examples ofScreeningTools Parent-completed questionnaire Designed to identify children at risk for autism Ages and Stages Questionnaires (ASQ) General developmental screening toolParent-completed questionnaireSeries of 19 age-specific questionnairesScreens communication, gross motor, fine motor, problem-solving, andpersonal adaptive skills; results in a pass/fail score for domains. Screening Tool for Autism in Toddlers and Young Children (STAT) Interactive screening tool consists of 12 activities assessing play, communication, andimitation skills 20 minutes to administer.11

ScreeningFlowchart12

Diagnostic ToolsDiagnostic tools usually rely on two mainsources of information—parents’ orcaregivers’ descriptions of their child’sdevelopment and a professional’sobservation of the child’s behavior (SelfReport Vs. Task Based) .In most cases, the primary care provider(PCP) will refer the child and family to aspecialist for further assessmentand diagnosis.Diagnosing autism spectrum disorder(ASD) can be difficult, since there is nomedical test, like a blood test, to diagnosethe disorders. Doctors look at the child’sbehavior and development to makea diagnosis.Even though ASD can be diagnosed asearly as age 12 months, In the UnitedStates, the average age of diagnosis withan autism spectrum disorder (ASD) isaround 4 years of age.13

CommonDiagnosticTools Autism Diagnostic Observation Schedule (ADOS) Considered the Gold Standard Childhood Autism Rating Scale (CARS) Autism Diagnosis Interview-Revised (ADI-R) Gilliam Autism Rating Scare-Third Edition(GARS-3) In addition to the tools above, the AmericanPsychiatric Association’s Diagnostic and StatisticalManual, Fifth Edition (DSM-5) providesstandardized criteria to help diagnose ASD14

ADOS A semi-structured, standardized assessment of socialinteraction, communication, play, and imaginative use ofmaterials for individuals suspected of having ASD. Includes five modules, each requiring 40 to 60 minutesto administer. The individual being evaluated is given only one module,selected on the basis of his or her expressive language leveland chronological age.15

GARS-3 The Gilliam Autism Rating Scale, Third Edition(GARS-3) helps clinicians identify autism, assess itsseverity, and determine appropriate intervention. Items in the third edition reflect criteria fordiagnosing Autism Spectrum Disorder (ASD) foundin the DSM-5. Fifty-six items clearly describe typical behaviors ofindividuals with ASD, and are grouped intosix subscales: Restrictive and Repetitive Behaviors Social Interaction Social Communication Emotional Responses Cognitive Style Maladaptive Speech Administration of the GARS-3 providesstandard scores, percentile ranks, severitylevel, and probability of autism.16

Who CanDiagnose?Must be of DOCTORALlevel of education andtraining (MD or PHD)There are a number ofprofessionals who candiagnose ASD. Eachtype of professionalhas different training.17

Diagnosing Providers1DevelopmentalPediatrician is apediatrician who hasadvanced training indevelopmental behavioralmedicine. DevelopmentalPediatricians evaluate,counsel, and providetreatment for children,adolescents, and theirfamilies with a wide range ofdevelopmental andbehavioral difficulties,including ASD.234Pediatric NeurologistChild PsychiatristChild Psychologistis a pediatrician who hasadvanced training in pediatricneurology. Child neurologiststreat children from birth intoyoung adulthood and oftendiagnose, treat, and manageneurological conditions,including ASD.is a physician who specializesin the diagnosis and thetreatment of disorders ofthinking, feeling, and/orbehavior, which affectchildren, adolescents, andtheir families. Many do havespecializations that includediagnosing ASD.holds a PhD (doctorate)degree. Psychologists mayhave many differentspecialties. Those whospecialize in diagnosing andtreating individuals with ASDmay have experience usingpsychometric evaluativemeasures, including the ADOSand the ADI-to diagnose ASD.18

MEDICAL DIAGNOSIS VS. EDUCATIONALELIGIBILITY FOR SPECIAL SERVICES: A medical diagnosis of ASD is made by a doctorusing symptom criteria set in the Diagnostic andStatistical Manual of Mental Disorders (DSM), abook published by the American PsychologicalAssociation (APA) Educational eligibility is decided by a teamcomprised of various school professionals and astudent’s parents. The team must find that thestudent qualifies for services under IDEA. To beeligible, IDEA requires that a student have atleast one of 14 specified disabilities and in needof special services. Autism is one of the14 categories Educational evaluation Category of eligibilityfor services19

Why is EarlyInterventionso Important ? An early diagnosis could mean that a child beginsaccessing effective treatment and accessesresources when they can be most effective. Withouta diagnosis, funding through public or privateinsurance is less likely Therapy is shown to be most effective on toddlersand young children because their brains are notcompletely developed and have increased potentialfor developing new learning pathways. Children who receive early intervention haveimproved outcomes and increased success andindependence in the long run.

Support Services and TreatmentThere is no one size fits all approach to autism treatment and intervention.Each autism intervention or treatment plan should be individualized to address the person's specific needsExamples of services: Early Childhood Intervention (ECI) Preschool Program for Children With Disabilities (PPCD) Speech Therapy (ST) Occupational Therapy (OT) ABA Therapy Recommended therapy for AutismECIPPCDOTSTABA21

Early Childhood Intervention (ECI) ECI: General term referring to services for infants and toddlers up to age 3 To be eligible for ECI services your child must meet one of the following three criteria: Medically Diagnosed Condition Auditory or Visual Impairment Developmental DelayWho Provides the Services? A team of licensed or credentialed providers evaluates the childand plans and provides services. The team may include: Speech and language pathologistsPhysical and occupational therapistsPsychologistsDietitiansSocial workersWhere are Services Provided? ECI providers work with the child and in natural environment which may include homeand community settings.22