No one has ever carried out a comprehensive behavioral and biological assessment of children with autism from diagnosis into middle childhood - until now.

With funding from the National Institute of Mental Health, investigators at the MIND Institute are inviting families who have participated in the Autism Phenome Project to return to the MIND Institute for additional follow-up testing.

Autism is a developmental disorder and available evidence suggests that it affects people differently throughout life. It is known, for example, that many of the associated or co-morbid behavioral and medical conditions are not seen early on but emerge during middle childhood or later. Epilepsy, for example, which affects up to 30% of individuals with autism, does not usually appear until adolescence or later. Anxiety, which is seen in even greater numbers of individuals with autism, also becomes more prominent in middle childhood. Currently, we cannot predict when a child is young whether they will experience epilepsy or anxiety when they get older. By bringing APP families back to the MIND Institute, we are hoping that the enormous amount of data that has already been collected will provide markers for those children who will have co-morbid conditions in middle childhood. Conversely, some children with autism recover from the disorder - they are said to have "optimal outcome." There is currently very little information on what are the characteristics of children who will follow this trajectory.

The new round of research has several goals:

  1. To determine early childhood behavioral and neural predictors of how children from the APP will be functioning when they reach middle childhood.
  2. To determine if there are patterns of brain development or genetics that predict those individuals with autism who will someday have anxiety disorders.
  3. To determine if the boys with abnormal brain enlargement have a different pattern of autism symptoms or are more prone to co-morbid conditions such as epilepsy.
  4. To determine the behavioral and biological characteristics of those children with autism who lose their diagnosis of autism and have optimal outcome.
  5. To investigate how and when early intervention promotes positive middle childhood academic, social, and language outcomes.

Eligibility

All families that have participated in the Autism Phenome Project are eligible for the Middle Childhood Study. Since this is a longitudinal study, its success will depend on the number of families that have already participated taking part in this new component. We encourage all families, even those who have only participated in the first year of the study, to consider coming back for a follow-up assessment.

What does participation involve?

Middle childhood is a time when many cognitive functions are best studied and when several co-morbid conditions first appear. The Middle Childhood Study is divided into two parts. Continued MRI analysis and baseline diagnostic, behavioral and medical analysis is carried out under the leadership of Dr. Amaral. Additional cognitive and neuropsychological testing is also carried out in the Middle Childhood Study under the leadership of Dr. Marjorie Solomon. Participation will involve four 3-4 hour sessions. We try to schedule the visits at your convenience, given the availability of staff and resources. The testing or procedures during each visit follow a general pattern, but the sequence may vary in order to accommodate your family’s needs and preferences.

What will you receive for participating in the study?

  • A brief letter of information about your child’s performance on the diagnostic and behavioral assessments.
  • A copy of the new MRI brain scan on a CD
  • A copy of the MRI report will be provided to your child’s physician, with your consent.
  • Compensation and a travel stipend after each visit.

How can I find out more information?

Feel free to contact our Research Study Coordinators, Caroline Gohring at 916-703-0448 or Elyse Adler at 916-703-0339. They will be happy to answer any additional questions you may have.

APP Middle Childhood FAQ »

APP Middle Childhood Overview »