Research
Longitudinal Study of Development
Read about our 30+ year-long study
For over 30 years, Dr. Lord has been the principal investigator of a prospective longitudinal study of development. The study has followed participants with autism spectrum disorder and other developmental delays beginning in early childhood (around age 2) to the present. Participants are now in their 30s and reside throughout the United States. Throughout the course of the study, there have been numerous journal articles published thanks to the dedicated participation of our sample.
Currently, the longitudinal study is researching transitions occurring in adulthood. The study is examining the behavioral and social mechanisms that account for variability of the adult ASD phenotype. Factors that contribute to positive and negative outcomes in adults with ASD, including various dimensions of behavior and well-being, the sibling relationship, family functioning, service utilization, and access to transition planning (e.g. identification of goals and related, key supports), will be identified. The study results will inform the clinical care of both adults and children with ASD.
If you are a participant trying to reach the longitudinal study team, you may email or call us. Unfortunately, we are not enrolling new participants at this time.
Longitudinal Study Publications
Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 55(5), 485–494.
Anderson, D. K., Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., Welch, K., & Pickles, A. (2007). Patterns of growth in verbal abilities among children with autism spectrum disorder. Journal of Consulting and Clinical Psychology, 75(4), 594–604.
Anderson, D. K., Maye, M. P., & Lord, C. (2011). Changes in maladaptive behaviors from midchildhood to young adulthood in autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 116(5), 381–397.
Anderson, D. K., Oti, R. S., Lord, C., & Welch, K. (2009). Patterns of growth in adaptive social abilities among children with autism spectrum disorders. Journal of Abnormal Child Psychology, 37(7), 1019–1034.
Bal, V. H., Kim, S.H., Cheong, D., & Lord, C. (2015). Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. Autism, 19(7), 774–784.
Bal, V.H., Fok, M., Lord, C., Smith, I. M., Mirenda, P., Szatmari, P., Vaillancourt, T., Volden, J., Waddell, C., Zwaigenbaum, L., Bennett, T., Duku, E., Elsabbagh, M., Georgiades, S., Ungar, W. J., & Zaidman-Zait, A. (2019). Predictors of longer-term development of expressive language in two independent longitudinal cohorts of language-delayed preschoolers with autism spectrum disorder. Journal of Child Psychology and Psychiatry.
Bal, V.H., Kim, S.H., Fok, M., & Lord, C. (2019). Autism spectrum disorder symptoms from 2 to 19: Implications for diagnosing adolescents and young adults. Autism Research, 12(1), 89–99.
Bal, V.H., Maye, M., Salzman, E., Huerta, M., Pepa, L., Risi, S., & Lord, C. (2020). The adapted ADOS: A new module set for the assessment of minimally verbal adolescents and adults. Journal of Autism and Developmental Disorders, 50(3), 719–729.
Bal, V.H, & Lord, C. (2015). Replication of standardized ADOS domain scores in the simons simplex collection. Autism Research,8(5), 583–592.
Bedford, R., Pickles, A., & Lord, C. (2016). Early gross motor skills predict the subsequent development of language in children with autism spectrum disorder. Autism Research, 9(9), 993–1001.
Bishop, S. L., Farmer, C., & Thurm, A. (2015). Measurement of nonverbal IQ in autism spectrum disorder: Scores in young adulthood compared to early childhood. Journal of Autism and Developmental Disorders, 45(4), 966–974.
Bishop, S. L., Havdahl, K. A., Huerta, M., & Lord, C. (2016). Sub-dimensions of social-communication impairment in autism spectrum disorder. Journal of Child Psychology and Psychiatry, 57(8), 909–916.
Bishop, S. L., Huerta, M., Gotham, K., Havdahl, K. A., Pickles, A., Duncan, A., Bal, V. H., Croen, L., & Lord, C. (2017). The autism symptom interview, school-age: A brief telephone interview to identify autism spectrum disorders in 5-to-12-year-old children. Autism Research, 10(1), 78–88.
Bishop, S. L., Richler, J., Cain, A. C., Lord, C., & Floyd, F. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112(6), 450–461.
Bishop, S. L., Thurm, A., Farmer, C., & Lord, C. (2016). Autism spectrum disorder, intellectual disability, and delayed walking. Pediatrics, 137(3).
Bone, D., Bishop, S., Black, M. P., Goodwin, M. S., Lord, C., & Narayanan, S. S. (2016). Use of machine learning to improve autism screening and diagnostic instruments: Effectiveness, efficiency, and multi-instrument fusion. Journal of Child Psychology and Psychiatry, 57(8), 927–937.
Esler, A. N., Bal, V. H., Guthrie, W., Wetherby, A., Weismer, S. E., & Lord, C. (2015). The Autism Diagnostic Observation Schedule, toddler module: Standardized severity scores. Journal of Autism and Developmental Disorders, 45(9), 2704–2720.
Frost, K. M., Hong, N., & Lord, C. (2017). Correlates of adaptive functioning in minimally verbal children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 122(1), 1–10.
Gotham, K., Bishop, S. L., Brunwasser, S., & Lord, C. (2014). Rumination and perceived impairment associated with depressive symptoms in a verbal adolescent-adult ASD sample. Autism Research, 7(3), 381–391.
Gotham, K., Brunwasser, S. M., & Lord, C. (2015). Depressive and anxiety symptom trajectories from school-age through young adulthood in samples with autism spectrum disorder and developmental delay. Journal of the American Academy of Child and Adolescent Psychiatry, 54(5), 369-376.e3.
Gotham, K., Pickles, A., & Lord, C. (2012). Trajectories of autism severity in children using standardized ADOS scores. Pediatrics, 130(5), e1278–e1284.
Gotham, K., Unruh, K., & Lord, C. (2015). Depression and its measurement in verbal adolescents and adults with autism spectrum disorder. Autism, 19(4), 491–504.
Havdahl, K. A, von Tetzchner, S., Huerta, M., Lord, C., & Bishop, S. L. (2016). Utility of the child behavior checklist as a screener for autism spectrum disorder. Autism Research, 9(1), 33–42.
Havdahl, K.A., Bal, V. H., Huerta, M., Pickles, A., Øyen, A.S., Stoltenberg, C., Lord, C., & Bishop, S. L. (2016). Multidimensional influences on autism symptom measures: Implications for use in etiological research. Journal of the American Academy of Child and Adolescent Psychiatry, 55(12), 1054-1063.e3.
Hus, V., Gotham, K., & Lord, C. (2014). Standardizing ADOS domain scores: Separating severity of social affect and restricted and repetitive behaviors. Journal of Autism and Developmental Disorders, 44(10), 2400–2412.
Hus, V., & Lord, C. (2014). The Autism Diagnostic Observation Schedule, module 4: Revised algorithm and standardized severity scores. Journal of Autism and Developmental Disorders, 44(8), 1996–2012.
Hus, V., Taylor, A., & Lord, C. (2011). Telescoping of caregiver report on the Autism Diagnostic Interview – Revised. Journal of Child Psychology and Psychiatry, 52(7), 753–760.
Jones, R. M., Pickles, A., & Lord, C. (2017). Evaluating the quality of peer interactions in children and adolescents with autism with the Penn Interactive Peer Play Scale (PIPPS). Molecular Autism, 8 (1), 28.
Jones, R. M., Risi, S., Wexler, D., Anderson, D., Corsello, C., Pickles, A., & Lord, C. (2015). How interview questions are placed in time influences caregiver description of social communication symptoms on the ADI-R. Journal of Child Psychology and Psychiatry, 56(5), 577–585.
Kim, S. H., Bal, V. H., & Lord, C. (2018). Longitudinal follow-up of academic achievement in children with autism from age 2 to 18. Journal of Child Psychology and Psychiatry, 59(3), 258–267.
Lord, C., Bishop, S., & Anderson, D. (2015). Developmental trajectories as autism phenotypes. American Journal of Medical Genetics, Part C, Seminars in Medical Genetics, 169(2), 198–208.
Lord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, T., Jones, E. J. H., Jones, R. M., Pickles, A., State, M. W., Taylor, J. L., & Veenstra-VanderWeele, J. (2020). Autism spectrum disorder. Nature Reviews Disease Primers, 6(1), 1–23.
Lord, C., Elsabbagh, M., Baird, G., & Veenstra-Vanderweele, J. (2018). Autism spectrum disorder. The Lancet, 392(10146), 508–520.
Lord, C., McCauley, J. B., Pepa, L. A., Huerta, M., & Pickles, A. (2020). Work, living, and the pursuit of happiness: Vocational and psychosocial outcomes for young adults with autism. Autism, 1362361320919246.
Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Archives of General Psychiatry, 63(6), 694–701.
McCauley, J. B., Pickles, A., Huerta, M., & Lord, C. (under review). Defining positive outcomes in more and less cognitively able autistic adults.
McCauley, Elias, R., & Lord, C. (in press). Trajectories of co-occurring psychopathology symptoms in autism from late childhood to adulthood. Development and Psychopathology.
Pickles, A., Anderson, D. K., & Lord, C. (2014). Heterogeneity and plasticity in the development of language: A 17-year follow-up of children referred early for possible autism. Journal of Child Psychology and Psychiatry, 55(12), 1354–1362.
Pickles, A., McCauley, J. B., Pepa, L. A., Huerta, M., & Lord, C. (2020). The adult outcome of children referred for autism: Typology and prediction from childhood. Journal of Child Psychology and Psychiatry.
Richler, J., Huerta, M., Bishop, S. L., & Lord, C. (2010). Developmental trajectories of restricted and repetitive behaviors and interests in children with autism spectrum disorders. Development and Psychopathology, 22(1), 55–69.
Thurm, A., Lord, C., Lee, L.C., & Newschaffer, C. (2007). Predictors of language acquisition in preschool children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(9), 1721–1734.
Learn More About Our Past Studies
The Tracking Health in Kids (THinK)
[Note: This study is no longer running or recruiting participants.]
The Tracking Health in Kids (THinK) study aims to compare behavioral responses to health and life events in typically developing children and children with autism in early childhood.
STUDY INFORMATION
Participation in this study requires office visits to our Westwood, Los Angeles lab. If you are located in the greater Los Angeles area and are able to travel to our lab, please read on.
Eligibility
- Have a child between the ages of 2-7
- Child must be typically developing or diagnosed with Autism Spectrum Disorder (ASD)
- Child needs to be able to hold objects in his/her hands and needs to walk independently
Involvement
- You will be asked to complete an intake and exit interview at UCLA. Over the course of three months (between intake and exit), you will be asked to record your child’s health through a smartphone application.
Benefits
- You and your child can receive up to $400 from UCLA upon completion of the study.
PROJECT PLAY Study
[Note: This study is no longer running or recruiting participants.]
The purpose of the BOSCC is to provide a standardized and efficient method of measuring change in social and communicative behaviors in people with neurodevelopmental disorders over a relatively short period of time (minimum 8 - 12 weeks). This study aims to assess the BOSCC’s sensitivity for children who can speak in simple sentences (2-word phrases containing a verb) or who communicate in complex sentences.
STUDY INFORMATION
Participation in this study requires office visits to our lab in Westwood, Los Angeles. If you are located in the greater Los Angeles area and are able to travel to our lab, please read on.
Eligibility
- Children between the ages of 2 and 16
- Children with an ASD diagnosis who are currently receiving services
- Can speak in either phrase speech (2 words with a verb) or are verbally fluent
Involvement
- This study involves two visits to UCLA, about 8 - 12 weeks apart, in which we conduct the BOSCC assessment (12-minute free play assessment with a standard set of toys).
Benefits
- Families will receive $25 for each visit to UCLA, totaling $50 for both visits.
BLOOM Study
[Note: This study is no longer running or recruiting participants.]
The purpose of the BLOOM (Boosting Language Outcomes of Minimally Verbal Children with ASD) study was to better understand how to support language development in young autistic children who use few spoken words. Researchers examined whether combining two evidence-based interventions, JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) and PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets), could improve speech and communication outcomes more effectively than JASPER alone. Findings from this study aim to help identify individualized approaches that promote meaningful language growth in children with autism.
STUDY INFORMATION
Participation in this study involved multiple visits to UCLA and intervention sessions conducted over a 12-week period.
Eligibility
- Children with a diagnosis of Autism Spectrum Disorder (ASD)
- Children who were minimally verbal and primarily used single words or very limited spoken language
- Children in the preschool age range
Involvement
- Comprehensive developmental and diagnostic assessments at UCLA
- Random assignment to receive either JASPER alone or JASPER combined with PROMPT
- Twice-weekly intervention sessions over 12 weeks
- Follow-up assessments to evaluate communication and language outcomes over time
Benefits
- Families received intervention and assessment services at no cost during participation
- Participation contributed to research focused on improving language interventions for young autistic children
SPROUT
[Note: This study is no longer running or recruiting participants.]
The purpose of the SPROUT study was to evaluate two emerging outcome measures, the ELSA (Elicitation of Language Samples for Analysis) and the BOSCC (Brief Observation of Social Communication Change), in the context of a JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) intervention trial. Researchers sought to determine whether these measures could effectively capture changes in language, social communication, and engagement skills in young autistic children participating in intervention.
STUDY INFORMATION
Participation in this study involved in-person visits to UCLA and a 10-week intervention program for eligible families.
Eligibility
- Children between 18 months and 5 years of age
- Diagnosis of Autism Spectrum Disorder (ASD)
- English as the primary language spoken at home
- Limited spoken language abilities
Involvement
- Comprehensive screening assessments, including diagnostic, cognitive, language, and social communication evaluations
- Videotaped play-based and language assessments with children and caregivers
- Random assignment to receive JASPER intervention delivered either by a clinician or by a caregiver
- Two 60-minute intervention sessions per week for 10 weeks
- Follow-up assessments at 10 and 20 weeks to measure social communication, language, and play skills
- Monthly check-ins with families during the follow-up period
Benefits
- Families received detailed information about their child's cognitive, language, communication, and social functioning
- Children had the opportunity to participate in a research-based intervention designed to support social communication development
- Participation contributed to research aimed at improving the measurement and evaluation of intervention outcomes for young children with autism