TSC-Associated Neuropsychiatric Disorders (TAND)
Tuberous sclerosis complex is associated with a wide range of cognitive, behavioral, and psychiatric manifestations. TAND is a new terminology proposed to describe the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties.
TSC is the genetic disorder most commonly associated with ASD, and suggestions of language and communication difficulties, reciprocal social interaction difficulties, and unusual patterns of behavior and play should trigger a careful developmental evaluation as soon as they are noted.
Experts at the 2012 TSC Clinical Consensus Conference recommended all individuals be screened for TAND upon diagnosis and at least annually. More detailed evaluations should follow from screening. Every individual with TSC should also have a comprehensive formal evaluation at key developmental timepoints (i.e., infancy, toddler, pre-school, early school years, middle school years, adolescence, adulthood).
In 2023, researchers from the TANDem project published International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) in the Journal of Neurodevelopmental Disorders.
The TAND Checklist
The TAND Checklist was developed to help clinical teams, individuals with TSC and their families screen for TAND at every clinic visit and prioritize what to do next.
Those wishing to translate the TAND Checklist into another language should download the following documents and follow the instructions:
The TANDem Project
For additional information, visit tandconsortium.org, the website of the TANDem project. TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who live with TSC around the world.
June 17, 2020: Valerie M. Volkert, PhD, BCBA-D (Marcus Autism Center) discussed feeding difficulties associated with TSC-Associated Neuropsychiatric Disorders (TAND).
May 19, 2020: Dr. Lomas Mevers (Marcus Autism Center) discussed toileting difficulties in TSC-Associated Neuropsychiatric Disorders (TAND).
April 21, 2020: Dr. Mindy Scheithauer (Marcus Autism Center) discussed elopement issues and TSC-Associated Neuropsychiatric Disorders (TAND).
March 19, 2020: Dr. Slocum Freeman (Marcus Autism Center) discussed problem behaviors associated with TSC-Associated Neuropsychiatric Disorders (TAND).
January 15, 2020: Nathan Call, PhD, BCBA-D (Marcus Autism Center) discussed effective behavioral treatments for TSC-Associated Neuropsychiatric Disorders (TAND).
June 28, 2019: Caroline Clyborne, LPC discussed Trauma 101 for Parents of Medically Complex Kids.
May 28, 2019: Dr. Tanjala Gipson discusses “TAND 101: The Evaluation.”
May 21, 2019: Special Education Attorney Kathleen Werbner, Esq., helps viewers “learn about your child’s rights and and how to navigate the special education system.”
April 20, 2018: Tanjala Gipson, MD (Le Bonheur Children’s Hospital) gave a presentation about TSC-Associated Neuropsychiatric Disorders (TAND) in children with TSC and how to seek help. Additional resources include Petersons Colleges for Students with Learning Disabilities or AD/HD, What is Section 504? and Understanding the Individuals with Disabilities Education Act: Your Rights as a Parent.
For more information, please send email to TANDchecklist@gmail.com.