State early intervention programs (EIPs) have been encouraged to develop and implement comprehensive outcomes measurement systems. As the number of children with autism spectrum disorders (ASD) and their families receiving services in state EIPs increases, disability-specific outcomes data are needed to better understand issues of access, costs, and benefits. The New York State Early Intervention Program (NYSEIP) used concept mapping with parent and professional stakeholders to define child and family outcomes expected from early intervention services for children with ASD and their families. Stakeholders generated more than 700 statements (synthesized to 105), then individually sorted (17 parents, 39 professionals) these statements into categories. Stakeholders rated each outcome on importance (20 parents, 48 professionals) and likelihood (18 parents, 46 professionals) that EIP services will yield a positive impact. The aggregated sort data were subjected to two separate sets of multivariate statistical analyses, producing an 11-cluster map of professionals’ conceptualization and a 7-cluster map of parent/family members’ conceptualization of the outcomes. Possible explanations for the parent/professional differences are discussed. The results will be used as part of ongoing efforts to develop a comprehensive evaluation system for state Part C EIPs that is grounded in stakeholders’ perspectives on expected outcomes for children and families.
American Academy of Pediatrics. (2012). Autism: Caring for children with autism spectrum disorders: A resource toolkit for clinicians (2nd ed.). Elk Grove, IL: Author.
2.
BaileyD. B.Jr. (2001). Evaluating parent involvement and family support in early intervention and preschool programs. Journal of Early Intervention, 24, 1-14.
3.
BaileyD. B.Jr.BruderM. B.HebbelerK.CartaJ.DefossetM.GreenwoodC.. . . BartonL. (2006). Recommended outcomes for families of young children with disabilities. Journal of Early Intervention, 28, 227-243.
4.
BoehmA.StaplesL. H. (2002). The functions of the social worker in empowering: The voices of consumers and professionals. Social Work, 47, 449-460.
5.
BoydB.OdomS.HumphreysB.SamA. (2010). Infants and toddlers with autism spectrum disorder: Early identification and early intervention. Journal of Early Intervention, 32, 75-98.
6.
BruderM. B. (2010). Early childhood intervention: A promise to children and families for their future. Exceptional Children, 76, 339-355.
7.
CarboneP. S.BehlD. D.AzorV.MurphyN. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317-324.
8.
ChakrabatiS.HaubusC.DugmoreS.OrgillG.DevineF. (2005). A model of early detection and diagnosis of autism spectrum disorder in young children. Infants & Young Children, 18, 200-211.
9.
ConroyM. A. (2010). Seeing the forest among the trees: When data do not speak loud enough. Journal of Early Intervention, 32, 99-104.
10.
CraisE.Poston RoyV.FreeK. (2006). Parents’ and professionals’ perceptions of the implementation of family-centered practices in child assessments. American Journal of Speech-Language Pathology, 15, 365-377.
11.
DempseyI.KeenD. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28, 42-52.
12.
DillenburgerK.KeenanM.DohertyA.ByrneT.GallagherS. (2010). Living with children diagnosed with an autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37, 13-23.
13.
DonnellyJ. P.DonnellyK.GrohmanK. K. (2005). A multi-perspective concept mapping study of problems associated with traumatic brain injury. Brain Injury, 19, 1077-1085.
14.
DonnellyJ. P.HuffS. M.LindseyM. L.McMahonK.SchumacherJ. D. (2005). The needs of children with life limiting conditions: A healthcare provider-based model. American Journal of Hospice & Palliative Medicine, 22, 259-268.
15.
DunnM. E.BurbineT.BowersC. A.Tantleff-DunnS. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39-52.
16.
DunstC. J. (2002). Family-centered practices: Birth through high school. Journal of Special Education, 36, 139-147.
17.
DymondS. K.GilsonC. L.MyranS. P. (2007). Services for children with autism spectrum disorders. Journal of Disability Policy Studies, 18, 133-147.
EikesethS.SmithT.JahrE.EldevikS. (2007). Outcome for children with autism who began intensive behavioral treatment between ages 4 and 7. A comparison controlled study. Behavior Modification, 31, 264-278.
22.
EverittB. (1980). Cluster analysis (2nd ed.). New York, NY: Halstead Press.
23.
FisherW. P.Jr.ElbaumB.CoulterW. A. (2012). Construction and validation of two parent-report scales for the evaluation of early intervention programs. Journal of Applied Measurement, 13(1), 57-76.
24.
FritzC. O.MorrisP. E.RichlerJ. J. (2012). Effect size estimates: Current use, calculations, and interpretation. Journal of Experimental Psychology: General, 141, 2-18.
25.
GeigerD. M.SmithD. T.CreagheadN. A. (2002). Parent and professional agreement on cognitive level of children with autism. Journal of Autism and Developmental Disorders, 32, 307-312.
26.
GuralnickM. J. (2011). Why early intervention works: A systems perspective. Infants & Young Children, 24, 6-28.
27.
HastingsR. P. (2008). Stress in parents of children with autism. In McGregorE.NúñezM.CebulaK.GómezJ. C. (Eds.), Autism: An integrated view from neurocognitive, clinical, and intervention research (pp. 303-324). Malden, MA: Blackwell.
28.
HastingsR. P.BeckA. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45, 1338-1349.
29.
HastingsR. P.BrownT. (2002). Behavior problems of children with autism, parental self-efficacy, and mental health. American Journal on Mental Retardation, 107, 222-232.
30.
HebbelerK.BartonL. (2007). The need for data on child and family outcomes at the federal and state levels. Young Exceptional Children Monograph Series, 9, 1-15.
31.
HebbelerK.SpikerD.BaileyD.ScarboroughA.MallikS.SimeonssonR.. . . NelsonL. (2007). Early intervention for infants and toddlers with disabilities and their families: Participants, services, and outcomes. Menlo Park, CA: SRI International.
32.
JinnahH. A.WaltersL. H. (2008). Including parents in evaluation of a child development program: Relevance of parental involvement. Early Childhood Research & Practice, 10(1). Retrieved from http://ecrp.uiuc.edu/v10n1/jinnah.html
33.
KaneM.TrochimW. M. K. (2007). Concept mapping for planning and evaluation. Thousand Oaks, CA: SAGE.
34.
KeenanM.DillenburgerK.DohertyA.ByrneT.GallagherS. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23, 390-397.
35.
KrippendorfK. (2004). Content analysis: An introduction to its methodology (2nd ed.). Newbury Park, CA: SAGE.
36.
KruskalJ. B. (1964). Multidimensional scaling by optimizing goodness of fit to a nonmetric hypothesis. Psychometrika, 29, 1-27.
37.
KruskalJ. B.WishM. (1978). Multidimensional scaling. Beverly Hills, CA: SAGE.
38.
LordC.BishopS. L. (2010). Autism spectrum disorders: Diagnosis, prevalence, and services for children and families. Social Policy Report, 24(2), 3-21.
39.
LordC.McGeeJ. P. (Eds.). (2001). Educating children with autism: Committee on educational interventions for children with autism. Washington, DC: National Academy Press.
40.
LordC.WagnerA.RogersS.SzatmariP.AmanM.CharmanT.. . . YoderP. (2005). Challenges in evaluating psychosocial interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 35, 695-708.
41.
NalavanyB. A.CarawanL. W.RennickR. (2011). Psychological experiences associated with confirmed and self-identified dyslexia: A participant-driven concept map of adult perspectives. Journal of Learning Disabilities, 44, 63-79.
42.
National Autism Center. (2009). National standards report. Randolph, MA: Author.
43.
New York State Department of Health. (2009). Clinical practice guideline: Quick reference guide. Autism/pervasive developmental disorders, assessment and intervention for young children (age 0-3 years). Albany, NY: Author.
44.
Noyes-GrosserD.ElbaumB. (2011, May). Measuring the impact of early intervention services on children and families: A model approach to family-centered program evaluation and quality improvement. Paper presented at the conference of the International Society for Early Intervention, New York City, NY.
45.
OzonoffS.Goodlin-JonesB. L.SolomonM. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child & Adolescent Psychology, 34, 523-540.
46.
PerkinsD. D.ZimmermanM. A. (1995). Empowerment theory, research, and application. American Journal of Community Psychology, 23, 569-579.
47.
PituchK. A.GreenV. A.DiddenR.LangR.O’ReillyM. F.LancioniG. E.SigafoosJ. (2011). Parent reported treatment priorities for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 135-143.
48.
RobertsK. J. (1999). Patient empowerment: A critical commentary. Health Expectations, 2, 82-92.
49.
RomanczykR. G.CallahanE. H. (2012). Autism and pervasive developmental disorders. In RamachandranV. (Ed.), The encyclopedia of human behavior (pp. 243-250). Waltham, MA: Academic Press.
50.
RosasS. R.CamphausenL. C. (2007). The use of concept mapping for scale development and validation in evaluation. Evaluation and Program Planning, 30, 125-135.
51.
RosasS. R.KaneM. (2012). Quality and rigor of the concept mapping methodology: A pooled study analysis. Evaluation and Program Planning, 35, 236-245.
52.
RubleL. A.DalrympleN. J. (1996). An alternative view of outcome in autism. Focus on Autism and Other Developmental Disabilities, 11, 3-14.
53.
RushC.HarrisonP. (2008). Ascertaining teachers’ perceptions of working adolescents diagnosed with attention-deficit/hyperactivity disorder. Educational Psychology in Practice, 24, 207-223.
54.
SchwartzI. S.SandallS. R. (2010). Is autism the disability that breaks Part C? A commentary on “Infants and toddlers with Autism Spectrum Disorder: Early identification and early intervention,” by Boyd, Odom, Humphreys, and Sam. Journal of Early Intervention, 32, 105-109.
55.
ShattuckP. T.RouxA. M. (2014). Autism: Moving toward an innovation and investment mindset. JAMA Pediatrics, 168(8), 698-699.
56.
SperryL. A.WhaleyK. T.ShawE.BrameK. (1999). Services for young children with autism spectrum disorder: Voices of parents and providers. Infants & Young Children, 11(4), 17-33.
57.
StoneW. L.RosenbaumJ. L. (1988). A comparison of teacher and parent views of autism. Journal of Autism and Developmental Disorders, 18, 403-414.
58.
SuenH. K.LoganC. R.NeisworthJ. T.BagnatoS. (1995). Parent-professional congruence: Is it necessary?Journal of Early Intervention, 19, 243-252.
59.
TrochimW. (1989). An introduction to concept mapping for planning and evaluation. Evaluation and Program Planning, 12, 1-16.
Virués-OrtegaJ. (2010). Applied behavior analytic intervention for autism in early childhood: Meta-analysis, meta-regression and dose-response meta-analysis or multiple outcomes. Clinical Psychology Review, 30, 387-399.
62.
ZivianiJ.CuskellyM.FeeneyR. (2010). Parent satisfaction with early intervention services for children with physical disabilities. Infants & Young Children, 23, 184-194.
