Prospective Long-Term Follow- Up of Patients With Pervasive Development Disorders Larry Burd, PhD; Jacob Kerbeshian, MD; Alyssia Westerland; Janelle Labine,

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Prospective Long-Term Follow- Up of Patients With Pervasive Development Disorders Larry Burd, PhD; Jacob Kerbeshian, MD; Alyssia Westerland; Janelle Labine, MD; Amy Barth, BS; Marilyn G. Klug, PhD; Kay Wagner, MD

Abstract We conducted a 12-year prospective study of children with pervasive development disorders from North Dakota. In a prospective longitudinal follow-up study, of 59 patients, we found 52 patients with pervasive developmental disorders (88%). Ten (17%) declined to participate. We collected data on 42 (71%) of the original cohort. Of the 42 subjects, 1 died (1.7%). The other 41 were followed up for 492 person-years. (J Child Neurol 2002; 17: )

North Dakota Autism Follow-Up Project The purpose of the project was to conduct a prospective follow-up on the cohort of children identified in the North Dakota prevalence study of autism and pervasive developmental disorders.

Age of Accomplishment in Months of Three Early Developmental Milestones for 42 Patients With Pervasive Developmental Disorders from North Dakota. _______________________________________________________________________________________________________ MilestoneMeanSDRange ________________________________________________________________________________________________________ Walked Total(n=36) Male(n=23) Female(n=13) Talked Total(n=28) Male(n=17) Female(n=11) Toilet trained Total(n=31) Male(n=21) Female(n=10)

Percent Change in Severity Measures at Initial Evaluation (Age 7.7 yr) and Follow-Up Evaluation (Age 20.2 yr) for 41 Patients With Pervasive Developmental Disorders From North Dakota. ________ ________________________________________________________________________________________________________ Initial EvaluationFollow-Up Mean MeanChange (%) _______________________________________________________________________________________________________________ DSM-III Total (20) Male (21) Female (19) DSM-IV Total (23) Male (24) Female (21)

Percent Change in Severity Measures at Initial Evaluation (Age 7.7 yr) and Follow-Up Evaluation (Age 20.2 yr) for 41 Patients With Pervasive Developmental Disorders From North Dakota. ________ __________________________________________________________________________________________________ Initial EvaluationFollow-Up Mean Mean Change (%) _________________________________________________________________________________________________________ Comorbidity Total (45) Male (41) Female (51) Reversed GAF Total (19) Male (24) Female (10) __________________________________________________________________________________________ DSM = Diagnostic and Statistical Manual of Mental Disorders; GAF = Global Assessment of Functioning.

Most Common Comorbid Diagnosis at Initial Evaluation (Age 20.2 yr, n = 41) in Patients With Pervasive Developmental Disorders From North Dakota. __________________________________________________________________________________________________________ Initial EvaluationFollow-Up Diagnosis n (%) n (%) _______________________________________________________________________________________________________________________________ Mental Retardation Mild/moderate 22 (52)10 (24) Severe/profound 14 (33)10 (24) Attention-deficit hyperactivity 19 (45)8 (20) disorder (ADHD) Tourette syndrome/ 11 (26)7 (17) tic disorders Seizure disorders 11 (26)5 (12) Developmental language disorder 16 (38)1 (2)

Austism Ratings at Follow-Up (Age 20.2 yr) and IQ Scores at Intake (Age 7.7 yr) of Patients With Pervasive Developmental Disorders From North Dakota. ____________________________________________________________________________________________________________________________ MeanSDRange ____________________________________________________________________________________________________________________________ ABC score Total(n=41) Male(n=27) Female(n=14) Number of symptoms Total(n=41) Male(n=27) Female(n=14) IQ at intake Total(n=40) Male(n=26) Female(n=14)

________________________________________________________ Summary of Change in 71% of 1986 Cohort ________________________________________________________ DSM-III Severity 20% DSM-IV Severity23% Comorbility45%

Summary of Change in 1986 Cohort Composite Severity score over 12.4 years28.7%

PDD in a Geographically Defined Cohort A Gradual Improvement of 2.2% per year