Welcome to the Autism Phenome Project
Purpose
Autism can look very different in different people. The goal of the Autism Phenome Project (APP) is to identify and describe different types of autism.
We know that not every therapy or treatment is helpful for everyone, so we aim to identify groups of children with common traits. These might be things like shared patterns of brain development or similar behaviors.
Eventually, we hope this information will help us in finding the best supports or therapies to meet an individual's unique needs.
History
The APP started in 2006 with the collaboration of numerous MIND Institute faculty and staff, led by Dr. David G. Amaral. Families originally enrolled when their child was 2-3 years old, and we have followed up with them at multiple time points since, from early childhood up through adolescence. We look at many different factors to help us get a complete picture of each child. This includes behavioral and neuropsychological assessment, medical history, blood draw, and an MRI scan of the brain. The APP includes both autistic and non-autistic children to help us understand the differences in development.
More than 300 families have participated in the APP. It has become the largest and most comprehensive assessment of children with autism in the world. We are very appreciative to all of the families that have participated so far and have helped us to improve our understanding of autism.
Current and related studies
The work of the APP continues today in many forms. We are continuing to follow-up with the original participating families. Findings from the APP have also helped us develop new studies and programs aimed at understanding subtypes of autism.
Phases of APP
Early Childhood
In the early childhood phase of the study, we enrolled children at ages 2-3, then followed up 1 year later (ages 3-4), and 2 years later (ages 4-5). This phase of the study was aimed at understanding early brain development, behavioral presentations of autism, and co-occurring medical conditions in young children.
We are not currently enrolling new participants in this portion of the APP.
We are enrolling autistic and non-autistic girls who are 2-4 years old in our related study, GAIN.
Middle Childhood
Autism can impact individuals differently throughout life. To understand autism over time, we initiated the Middle Childhood phase of the APP. In this phase, we focus on autistic traits, co-occurring medical and mental health conditions, and brain development. We also are looking at how behavioral or biological characteristics in early childhood may predict the strengths and challenges a child will face in middle childhood.
We are currently recruiting the following for the Middle Childhood phase of APP:
Families who participated in previous phases of the APP and whose child is now 9-12 years old
Adolescence
We are continuing to follow participants longitudinally to look at brain development over time, effects of puberty on the brain and behavior, and co-occurring mental health conditions like anxiety and depression. We are currently inviting families who participated in previous phases of the APP to return for this phase of the study when their child is 15-18 years old.
We are not currently enrolling participants in this phase who have not completed earlier phases of the APP.
If you are interested in participating in any of the studies listed above, please contact our team at
hs-TeamAPP@ucdavis.edu.