THE PRIMARY CARE OF CHILDREN WITH AUTISMROBERT T. BURKE, MD, ANN-MARIE CARDOSI, RN, BSN,

ASHLEY PRICE, MD, FAAFP, AND ALANNA TEATOM-BuRKE

Over the last decade, the subject of physicians in the care of children Surveillance by asking questions relatedautism has been magnified in the minds with and without special health care to child development should be partof the general public, as well as in the needs.8 Among the provisions of of the routine health maintenanceconsciousness of child development, the Medical Home are a range of examination for all children. This willeducation, medicine, and public health clinical and supportive services.9 improve the early identification ofprofessionals. Autism, once thought of These are the provision of primary children with developmental problemsas rare, is now recognized as occurring health care including surveillance when the parents do not report anymuch more commonly than believed and screening, care management, specific concerns.and affecting not only individual referral and coordination of care, The second "A" stands for Actingchildren and families but the health education and guidance for the child Early. Some general surveillancecare, early intervention and educational and family, advocacy and support questions can be red flagsfor identifyingsystems as well. In the not too distant and the transition of health care as children at risk of developmentalpast, autism was thought to effect the child matures.10 The American disorders. (Table 1)approximately 4 or 5 children in Academy of Pediatrics has published A more formal screening process10,000.I More recent studies have an extensive technical report on the for Autistic Spectrum Disorder can bereported incidence of 1 to 2 per 1,000 pediatrician's role in the diagnosis and carried out during routine well-childwith some surveys reporting even care of children with any of the autistic examinations or selectively for childrenhigher incidences.2,3,4In Rhode Island, spectrum disorders.11 The Academy thought to be at risk based on answersthe number of children betWeen ages 3 has also joined with the United States to surveillance. (See the discussion byand 21 years receiving special education Department of Health and Human Drs. Gargus and Yatchmink this issue).serviceswho reportedly have one of the Services and other organizations to Because there is an increased risk of anautistic conditions increased from 30 promote the A.L.A.R.M. Project to approximately 10% occurrence amongto 605 betWeen 1993 and 2002.5 The improve professional understanding the siblings of children with autism, thenumber of children in Rhode Island of autism and to encourage screening health care provider should monitorwith one of the autistic conditions and early referral for diagnosis and the social, communication, adaptiveis estimated as being well over one intervention.12,13 and behavioral development of thethousand. Virtually every pediatric Increasing awareness of autism siblings of autistic children, not onlypractice is likely to have at least one and autistic spectrum disorders is for signs of autism but other cognitivechild with an autistic condition. perhaps the most important initial or developmental disorders as well.

Autism and autistic spectrum step. The first "A" in A.L.A.R.M. The next recommended step indisorders (ASD) represent a indicates that "Autism is prevalent." AL.ARM. is"R" for referralof childrenheterogeneous group of disorders with Autism, Autistic Spectrum Disorders who are at risk for any developmentalmarked variability in the presenting and other developmental disorders disorder, including Autistic Spectrumcharacteristics of qualitative differences occur with greater frequency than Disorders, to an Early Interventionin reciprocal social interaction and previously believed:. autistic disorders program and to a developmentalcommunication and with restrictive occur in more than one child in five specialist for a diagnostic evaluation.behaviors that become apparent in early hundred while other developmental The primary care provider can movechildhood. These children present the or behavioral disorders may occur in this process along by obtaining anpediatric care provider with challenges as many as one child in six.2 audiologic examination of hearingin screening, diagnosis, treatment "L" denotes" listening to parents". and a speech and language evaluation.and management. Both residents in Parents of children diagnosed with Referral should be made as soon astraining and practicing pediatricians autism at an age older than 3 years a developmental risk is identified.report autistic children among the frequently have reported concerns This should be done even prior to themore challenging groups of patients for about their child's development to a formal diagnosis of developmentalwhom they provide care. Nevertheless, health provider by the time the child disorder. Referral should also bemost providers remain willing to is eighteen months old; but parents made to a developmental specialistprovide care and to improve the level report lengthy delays betWeenreporting for a definitive diagnostic evaluation.of care that they provide.6.7 their concerns and referral. Parents' This will ensure that the child will beOver the last decade, The American concerns may sometimes not point promptly evaluated and enrolled inAcademy of Pediatrics, through its to a specific developmental disorder, therapeutic services while the familyMedical Home Project, has promoted but, more often than 11:0t,do indicate receives support services.the role of pediatricians and family the need for more formal screening. Becuase autism is a complex and

159VOL. 88 No.5 MAY 2005

Table1.RedFlagScreeningQuestionsforAutisticSpectrumDisorders

"No babblingby 12monthsof age"No pointingor othergesturesby 12months"Nosinglewordsby 16months"Notwo-wordsentencesby 24months"Anylossof languageor socialskillat anyage.

Otherquestionsandobservationsfocusmoredirectlyonautisticspectrumdisorders,including;"Isyourchildableto:

"communicateaswellas otherchildrenhis/herage?"showgoodeyeto eyecontact?"respondto his/hername?"interactwithpeoplelikeotherchildrenhis/herage?"smilebackat peoplereciprocally?"wavebye-bye?"pointto objectsto drawyourattentionto them?"tellor showyouwhathe/shewantsor doeshe/shehaveto leadyouby

the handto getthings?"bringyoubooksor toysof interestto him/hersimplyto showyou?"playinteractivelywithotherchildren?"playin a waythat istypicalof otherchildrenhis/herageandgender?"playwithtoysin a typicalway?"engagein pretendplayif over2 yearsof age?"havethe abilityto calm him or herselfin a relativelyshorttime when

upsetor havinga tantrum?"getto sleepandremainsleepingall night?

"No"or negativeanswersindicatethe needfor furtherevaluation.

'10

multifaceted condition, the definitive

diagnosis and characterization ofspecific disabilities is best carried outby a team of experienced evaluators.15Referral to a pediatric developmentalspecialist or autism diagnostic unitshould be made as soon as possible toclarify the diagnosis and to documentthe child's developmental and behavioralchallenges. The diagnostic assessmentshould be based on formal diagnosticcriteria such as those published in theDSM-IV or the ICD-9. The Autism

Diagnostic Interview - Revised(ADI-R) and the Autism DiagnosticObservational Scales (ADOS) 16.17.18

are not only useful in establishing thediagnosis of Autistic Spectrum Disorder,but are invaluable in documentingthe behavioral and developmentalchallenges that will need to be addressedin any behavioral or educational serviceplan.

Referrals to Early Intervention for

children under age three and to specialeducation services for those over three

are key interventions. Early intensivecommunication and socialization-based

interventions such as ABA (AdvancedBehavioral Analysis) and TEACHHPrograms have been shown to be amongthe most effective interventions in

improving the child's ability to developlanguage and communication skills andin helping with social integration.19.2oAdditionally, families should be linkedup with support services such as theAutism Society.

The "M" stands for Monitor.

Beyond monitoring, though, theprimary care provider must also mentorthe family through the subsequentlearning and adjustment. After adefinitive d"iagnosis of one of theAutistic Spectrum Disorders has beenmade, the primary care office mustexpand its role as a Medical Homenot only to provide care but to insure

access to primary and specialty careand care coordination. This should

include monitoring of the child'soverall health, immunizations and

care of the typical illnesses and injuriesof childhood. Because children withautism have similar health care needs

as other children, the primary careprovider must remain actively involvedin the general pediatric care and notabrogate those responsibilities becauseof the diagnosis of autism. Thereshould be continued surveillance for

behaviors that might be related to or beoutcomes of a child's autistic condition,

such as altered eating, sleep patternsand toileting. Behavior problemsmay arise at times of physical stress,such as illness or the onset of puberty.Special consideration should be given tomonitoring destructive, self-injuriousor aggressive behavior. Progress inlanguage development and behaviorshould be reassessed regularly..

After the diagnosis has been made,families may well return to their child'sprimary careprovider for guidance aboutinterventions, educational programsand treatments. Using a case-basedlearning approach, the pediatriciancan become informed about Autistic

Spectrum Disorders and be a valuableresource for the family. Consultationwith a pediatric developmental andbehavioral specialist is essential in theoverall management of the care ofthe child with autism. Nevertheless,

the primary care provider should besufficiently versed in the care of childrenwith autism to be able to answer basic

questions. This may be particularlyimportant in the areas of causation,intervention and those unproventreatments that promise improvementor even a cure. Recently the mediahas publicized a possible causativerelationship berween measles, mumpsand rubella (MMR) immunization

and autism. Despite several large stUdiesfailing to demonstrate any causativerelationship, many in the public suspecta link. 21.22The primary care providercan offer information, clarificationand reassurance for families. Parents

can feel confused when presented withunproven treatments that promiseimprovement or even cure; e.g., dietary

MEDICINE AND HEALTH I RHODE ISLAND

manipulation, therapeutic interventionor medications, such as intravenousadministration of secretin or chelation

therapy. Several stUdies have shownthose treatments to be of no value in

altering behavior or function of autisticchildren.23.24 Yet some health care

professionals support the use of secretinin the treatment of children with

autism. The primary care pediatricianor family physician may be calledupon to assist families in selectinginterventions for their children.

The primary care provider may alsoneed to advocate on behalf of the child

and family with schools and health careplans. At other times, questions willarise about the transitions that occurin the lives of families with autisticchildren as indeed in all families of

children with special needs. The firstand most critical transition is at the time

of diagnosis when parents must cometo terms with their child's severe and

potentially life-long disability. At thesame time parents must face enrollingtheir child in an early interventionprogram. Though this is accompaniedby the expectation of improvement, itis an additional confirmation of the

child's disability. Later there will bethe transition from early interventionat age three to a special educationschool program. At any time duringchildhood there may be crises over thechild's behavior or developmental lags.In early adolescence the transition ofeducational, social and health care will

begin, ending in the transfer of theyoung adult to adult care and servicesystems.1ODuring each transition, theprimary care provider may be asked toprovide guidance.

The primary carepediatric provider,whether a pediatrician, family physicianor nurse practitioner, plays a crucial,central and important role in theassessment of the child at risk of autism

and in providing ongoing care afterthe diagnosis is made. The Academyof Pediatrics has recommended roles

for the primary care provider in thediagnosis and management of childrenwith Autistic Spectrum Disorders.2sImportant points for pediatric careproviders are listed in Table 2.

Though usually diagnosed in

Table 2. Fourteen Points for Providing a Medical Home for theChildwithAutisticSpectrum Disorder and the Family

1. Be aware of the "Red Flags" for Austistic Spectrum Disorder.2. Incorporate behavioral and developmental surveillance into

health maintenance visits.3. Use formal autism screening tools such as the Checklist for

Autism in Toddlers (CHAT)or the Pervasive DevelopmentalDisorders Screening Test-II (PDDST-II) when the possibilityof Autistic Spectrum Disorders is suspected.

4. Refer to Early Intervention when any developmental risk issuspected.

5. Make an early referral to a pediatric behavior and developmen-tal specialty team for a thorough diagnostic assessment whenASD is suspected.

6. Refer to a pediatric neurologist, geneticist and other specialistswhose insights might be important in establishing causation.

7. Use case-based learning to improve knowledge and ability toprovide care and support to the child and family.

8. After the diagnosis ofAutistic Spectrum Disorders, put the familyin contact with local and national autism support groups.

9.Assist the family of the autistic child to obtain emotional support,and refer to supportive and mental health services.

10. Partnerwith parents in a discussion of the diagnosis, treatmentand intervention for the child, the parents and siblings.

11.After diagnosis, be vigilant for the developments of co-morbidi-ties and specific sleep, eating and behavioral disorders, suchas aggression or regression.

12.Advocate for the child and family with schools, service provid-ers, state agencies and health insurers.

13. Be proactive at times of transition. Begin the planning processof transition to adult health care and service as early as 12years of age with the transfer of care anticipated to take placeas a young adult.

14. Providea Medical Homewith access to routineand coordinatedcare that is family-centered and culturally sensitive.

childhood and often considered a

childhood condition, autism isa lifelongdisorder with lifelong disabilities. Thecare of patients with autism needs toextend beyond childhood. Transitionand transfer to adult care is an essential

element for the autistic young adult.This will require improvements intraining not only for providers ofpediatric care but also for adult healthcare providers.26

REFERENCES

1. Yeargin-Allsopp M, et al. JAMA 2003;289:49-55.

2. Gillberg C, Wing L. Acta Psychiatr Scand1999; 99:399-406.

3. Fombonne E. PsycholMed 1999; 29:769-86.4. Center of Disease Control and Prevention.

Prevalence of Autism in Brick Township,

New Jersey, 1998: Community Report.Atlanta, GA: Center for Disease Controland Prevention; 2000.

5. Rhode Island Department of Primaryand Secondary Education. Rhode IslandStudents with Autism, Aged 3-21. AnnualSpecial Education Census Report 1993-2003, Providence, RI: RI Department ofEducation; 2004.

6. Burke RT, Kiessling, LS. AmbulatoryChild Health 2001; 7:323-30.

7. Burke R, Cardosi, MA, Price A. Surveyof primary care pediatrician on the levels ofcare provided to children with special needs.Unpublished data.8. American Academy of Pediatrics, TaskForce on the Definition of the Medical

Home. Pediatrics 1992; 90:744.

9. American Academy of Pediatrics, MedicalHome Initiative for Children with SpecialNeeds Advisory Committee. Pediatrics2002; 101: 184-6.

VOL. 88 No.5 MAY 2005

10. American Academy of Pediatrics,Committee on Children with Disabilitiesand Committee on Adolescence. Pediatrics

1996; 96: 1203-6.

11. American Academy of Pediatrics,Committee on Children with Disabilities.Pediatrics 2001:107:1227-45.

12. Johnson CPOAAP News 2004: 24:74.13. Baron-Cohen S, Cox A. Baird G. Br f

PsycholI996;168: 158-63.

14. Siegel B. Early screening and diagnosisin autistic spectrum disorders. Paper

presented at: The State of the Science inAutism: Screening and Diagnosis WorkingConference; June 15 -17, 1998, Bethesda,MD.

15. Filipek PA, Accardo PJ, , et al. Neurol2002; 55: 468-79.16. Cox A, Klein K Charman T. f Child

PsycholPsychiatry 1999; 40: 719 -32.17. Lord C, Risi S" et al. f Autism DevDisord 2000;30: 205-23.18. DiLavore PC, Lord C, Rutter M. fAutism Dev Disord 1995;25: 355-79.

19. Smith T, Lovaas 01. Infants and YoungChildren 1998; 10: 67-78.

20. Schopler E, Mesibov GB, HearseyK. Structured teaching in the TEACCHsystem. In: Schopler E, Mesibov GB, eds.Learning and Cognition is Autism. NewYork, NY: Plenum Press; 1995: 243 -368.21. Parker, et al. Pediatrics 2004;114:793-804.

22. Wilson, et al. Arch Pediatr Ado/esc Med

2003; 157:628-34.23. Sandler AD, et al. NEfM 1999; 341:1801-6.

24. Shammon M, Levy SE, Sandler AD.AAP News 2001; 6: 32a-33.

25. American Academy of Pediatrics,Committee on Children with Disabilities.Pediatrics 2001: 107:1221-6.

26. Gesenway D. ACP ObserverDec.2004.

Robert T. Burke, MD, is Assistant

Professorof Pediatrics, Brown MedicalSchool, and Chair of the Committee forChildren with SpecialNeedsof the RhodeIsland Chapter of theAmerican Academyof Pediatrics.

Ann-Marie Cardosi,RN, BSN, is a

staff nurse in the Pediatric Primary CareCenter and the Primary Care CenterforChildren with Special Needs, Memorial

Hospital of Rhode Island.Ashley Price, MD, FAAFP, is an

Assistant Professor(Clinical) of FamilyMedicine, Brown Medical School, and

a family physician at the CranstonCommunity Health Center.

Alanna Teatom-Burkeisa student at

the University of New England School ofOsteopathic Medicine.

Correspondence:Robert T. Burke, MD

Department of PediatricsMemorial Hospital of Rhode Island111 Brewster St.PaWtucket, RI 02860Phone: (401) 729-2582Fax: (401)729-2854

e-mail: RobercBurke@mhri.org