Neurodevelopmental Disabilities: Clinical Care for Children and Young Adults PDF
Preview Neurodevelopmental Disabilities: Clinical Care for Children and Young Adults
Neurodevelopmental Disabilities · · Dilip R. Patel Donald E. Greydanus · Hatim A. Omar Joav Merrick Editors Neurodevelopmental Disabilities Clinical Care for Children and Young Adults 123 Editors DilipR.Patel DonaldE.Greydanus DepartmentofPediatricsandHuman DepartmentofPediatricsandHuman Development Development KalamazooCenterforMedicalStudies KalamazooCenterforMedicalStudies MichiganStateUniversityCollege MichiganStateUniversityCollege ofHumanMedicine ofHumanMedicine Kalamazoo,MI49008-1284 Kalamazoo,MI49008-1284 USA USA [email protected] [email protected] HatimA.Omar JoavMerrick AdolescentMedicineandYoungParent NationalInstituteofChildHealthand Programs,KentuckyClinic HumanDevelopment,HealthServices DepartmentofPediatrics OfficeoftheMedicalDirector,Division KentuckyChildren’sHospital forMentalRetardation UniversityofKentuckyCollege MinistryofSocialAffairsandSocial ofMedicine Services Lexington,KY,USA POBox1260,IL-91012Jerusalem [email protected] Israel KentuckyChildren’sHospital UniversityofKentucky Lexington,KY,USA [email protected] ISBN978-94-007-0626-2 e-ISBN978-94-007-0627-9 DOI10.1007/978-94-007-0627-9 SpringerDordrechtHeidelbergLondonNewYork LibraryofCongressControlNumber:2011922661 ©SpringerScience+BusinessMediaB.V.2011 Nopartofthisworkmaybereproduced,storedinaretrievalsystem,ortransmittedinanyformorby anymeans,electronic,mechanical,photocopying,microfilming,recordingorotherwise,withoutwritten permissionfromthePublisher,withtheexceptionofanymaterialsuppliedspecificallyforthepurpose ofbeingenteredandexecutedonacomputersystem,forexclusiveusebythepurchaserofthework. Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Foreword I am very pleased to write the foreword to this book. There are a number of other related books on the subject, most notably Developmental–Behavioral Pediatrics nowinits4thedition[1]CaputeandAccardo’sNeurodevelopmentalDisabilitiesin InfancyandChildhoodnowinits3rdedition[2]andRubinandCrocker’sMedical CareforChildrenandAdultswithDevelopmentalDisabilitiesnowinits2ndedition [3], which plumb the depths of what we know about child development, devel- opmental delays, differences and disabilities, and health care. Yet, there is always something we do not know, always something new to understand, to comprehend, andprocess.Thefactthatwithinthepast50yearswehaveseenthefieldofdevel- opmental pediatrics arise from relative obscurity to legitimacy in the formation of the specialties of developmental behavioral pediatrics and neurodevelopmental pediatrics within the universe of pediatrics in the United States is a testament to the realization and appreciation of the importance of promoting child health and developmentinourworldtoday. Furthermore, we have seen, in the past 50 years, the greater appreciation and respectforindividualswithdevelopmentaldisabilities.Thedarkanduglyerainflu- enced by the pseudo-science of eugenics and the systematic marginalization and rejectionofindividualswithdevelopmentaldisabilitiesbyasociety,whichcreated placesfarfromtheactivecentersoffamily,communityandsociety,morphedinto overcrowded, unsanitary, and unconscionable institutions. These institutions were opened to public view in the 1960s and 1970s in the United States, as well as in theUnitedKingdomandEurope,thensubsequently,withtheGlasnostoftheearly 1990s,theopeningoftheSovietinstitutions.Inthepastfivedecadeswehaveseen deinstitutionalization,communityintegration,self-determination,andaffirmationof therightsofindividualswithintellectualanddevelopmentaldisabilitiesinsomany ways. We have witnessed laws that have assured the promotion of early interven- tion for infants from birth to 3 years of age, the education for all “handicapped children,” employment and living opportunities for adults, the recognition of self- determination as a right, and the capstone, Americans with Disabilities Act that servestoopenallofsocietytoallpeoplewithdisabilities. The pioneering efforts that arose after the horrors of the prequel and sequel of theSecondWorldWarhavepromoted,throughtheUnitedNations,HumanRights forallcitizens,particularlythosemostvulnerable–inthiscontext,individualswith v vi Foreword disabilitiesandthechildrenoftheworld.Whereasinthedarkagesofthefirsthalfof thetwentiethcentury,individualswhoweredifferentwereostracizedandexcluded from society resulting in disruption and destruction of the values upon which our livesdepend,thesecondhalfofthetwentiethcenturyhasseeninclusionofindivid- ualswhoaredifferentwithaspiritofacceptance,acknowledgment,andappreciation ofdifferencesbetweenpeople. In our own time we have witnessed advances in knowledge and understanding of child development, we have developed strategies and programs to improve the healthandwell-beingofchildrenwithdevelopmentaldisabilitiesandtheirfamilies inthecommunitiesinwhichtheylive,and,intheprocess,wehaveenrichedallof society.Thishasconnectedusinamyriadofwaysthataffirmourvaluesofrespect andpersonaldignityforallandfortherecognitionthatweareallimbuedwiththe spiritoflife,thatweareallinterdependentupononeanother,andthattheultimate measure of an individual or a society is in how the most vulnerable members of societyaretreated. Oneoftheimportantlandmarksmentionedinthechapteronhealthcareinthis book is the turning point in the 1960s in the United States. This was initiated not originallybythethenpresidentJohnF.Kennedybutbyhismother,RoseKennedy, whopresseduponhimandadvocatedfortheneedtoaddresstheplightofindividuals with–whatwasthencalled–mentalretardation.Theformationandformulationof theUniversityAffiliatedFacilities,MentalRetardationResearchCenters,andofthe NationalInstituteofChildHealthandDevelopmentcreatedforus–now50years later–theresearchunderpinningsofwhatwehavelearnedaboutchildrenandadults withintellectualanddevelopmentaldisabilitiesandthetrainingofprofessionalsin the interdisciplinary clinical practice of providing the necessary services in early identification, early intervention, and comprehensive care – not to mention strate- giesforpreventionandhealthpromotionatprimary,secondary,andtertiarylevels, education and social opportunities. These institutions reflect the pillars of health and well-being for our society, research, clinical practice, public health policies, and,mostimportantofall,advocacy. ItiswiththisbackgroundthatwenowcanlookatthisbookNeurodevelopmental Disabilities: Clinical Care for Children and Young Adults edited by Patel, Greydanus,Omar,andMerrick.Thisbookisbynomeansarepetitionorareplayof theclassictextsmentionedabovebutservestosupplementandcomplementexist- ingtextsbybringinganup-to-date,well-researchedsetofthoughtfullyconsidered chapters to provide a readily readable and accessible way to consider the current world of child development. It offers pediatricians and other providers of child health and developmental services a way in which to confront the common real- ityofdifferences,delays,anddisabilitiesforchildrenandtheirfamiliesinthelong termandinthebigpicture.Astheypointoutandelaborate,itisnotonlyimportant to understand the fundamentals of child development and to identify and evaluate childrenwhoaredevelopingdifferentlyalsonecessarytoknowandunderstandhow to make diagnoses, develop treatment plans, and communicate with families and othermembersofsocietyinordertoassuretheoptimaloutcomeforthechild,the family,thecommunity,andultimatelyforsociety. Foreword vii SpecificallythechaptersareorientedinGoogleMapkindofway–lookingfrom thebigpicturetothesmalldetails,fromchilddevelopmentingeneraltomanyspe- cificgeneticandacquiredconditionsinparticular.Eachchapteriswellresearched andwellpresentedtogivethereaderagoodgraspofthesubjectandagoodsetof referencestoexploreingreaterdepthifdesired.Apartfromthestandardsetofnec- essarychaptersinsuchatextbook,theyhaveenrichedthetableofcontentswithan examinationoffamilies–parents,siblings,andothercaregivers–and,inparticular, thesituationofthechildwhoisadopted.Iamalsopleasedtoseetheconsideration giventosexuality,pain,thechildwithachronicillness,andthesensitivesubjectof endoflifeandpalliativecare. Althoughthefocusofthebookisonthedevelopmental,learning,andbehavioral aspects of neurodevelopmental disabilities, they do touch on the medical care of children from the clinical practice to the public health perspective. Furthermore, theytacklethechallengethatallpediatriciansconfront,andmoresotothefamilies, whenthechildrenreachadolescenceandadulthood,andtheygraduatefromschool, needtohaveanadultorientedphysician,leavehome,findajob,andbegintoliveas independentlyaspossible. Thus,Icommendtheeditorsandauthorsforawell-constructedandwell-written book, andIrecommend thisbook as anextremely usefuland valuable text forthe medicalstudent,theresident,andforthepracticingpediatricianaswellasforother professionalswhoprovidecareforchildren. Personally, for me it is gratifying to seeing the fruits of all the work that has gonebeforebeingtranslatedintothepromotionofgoodhealthanddevelopmentfor allchildrenwithfreedomfromunnecessarypainandsuffering.Butwecannotrest here, we must move forward to increase our knowledge and ability to make this a realityforallchildrenatagloballevel. Atlanta,GA I.LeslieRubin,MD References 1. Carey WB, Crocker AC, Elias ER, Feldman HM, Coleman WI, editors. Developmental– behavioralpediatrics.4thed.Philadelphia,PA:WBSaunders;2009. 2. Accardo PJ, editor. Capute and Accardo’s neurodevelopmental disabilities in infancy and childhood.3rded.Baltimore,MD:PaulHBrookes;2008. 3. Rubin IL, Crocker AC, editors. Medical care for children and adults with developmental disabilities.2nded.Baltimore,MD:PaulHBrookes;2006. ThisisBlankPageIntegra viii Contents 1 NeurodevelopmentalDisabilities:Introduction andEpidemiology . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 DilipR.PatelandJoavMerrick 2 BasicConceptsofDevelopmentalDiagnosis . . . . . . . . . . . . . 15 DilipR.Patel 3 PsychologicalAssessmentandTesting . . . . . . . . . . . . . . . . 29 MargoAdamsLarsen,ErinTentisBerglund,RobinJoseph, andHelenD.Pratt 4 InbornErrorsofMetabolism . . . . . . . . . . . . . . . . . . . . . 53 ManmohanK.Kamboj 5 GeneticEvaluationinDevelopmentalDisabilities . . . . . . . . . . 69 HelgaV.Toriello 6 NeurodevelopmentalDisordersinCommonSyndromes . . . . . . 79 HelgaV.Toriello 7 AutismSpectrumDisorders . . . . . . . . . . . . . . . . . . . . . . 97 AhsanNazeer 8 AttentionDeficitHyperactivityDisorder . . . . . . . . . . . . . . . 111 DonaldE.Greydanus 9 SleepinChildrenandAdolescentswithNeurobehavioral Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141 BantuChhanganiandDonaldE.Greydanus 10 LearningDisabilities . . . . . . . . . . . . . . . . . . . . . . . . . . 147 HelenD.PrattandDonaldE.Greydanus 11 IntellectualDisability . . . . . . . . . . . . . . . . . . . . . . . . . . 161 DilipR.PatelandJoavMerrick 12 DevelopmentalLanguageDisorders . . . . . . . . . . . . . . . . . 173 NickolaWolfNelson ix
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