Cluster | Members | TAND Checklist items |
---|---|---|
Autism-like | Nola Chambers (lead), Jamie Capal (co-lead), Eva Schoeters, Sebastián Cukier, Shoba Srivastava | • Absent or delayed onset of language to communicate • Repeating words or phrases over and over again • Poor eye contact • Difficulties getting on with other people of similar age • Repetitive behaviors, such as doing the same thing over and over again • Very rigid or inflexible about how to do things or not liking change in routines |
Dysregulated behavior | Tanjala Gipson (lead), Peter Davis (co-lead), Agnies van Eeghen | • Aggressive outbursts • Temper tantrums • Self-injury, such as hitting self, biting self, scratching self |
Eat/sleep | Stacey Bissell (lead), Katie Smith (co-lead), Peter Davis | • Difficulties with eating, such as eating too much, too little, unusual things • Sleep difficulties, such as falling asleep or waking |
Mood/anxiety | Agnies van Eeghen (lead), Jamie Capal (co-lead), Megumi Takei, Robert Waltereit | • Anxiety • Depressed mood • Extreme shyness • Mood swings |
Neuropsychological | Anna Byars (lead), Jennifer Flinn (co-lead) | • Memory, such as remembering things that have happened • Attention, such as concentrating well, not getting distracted • Dual-tasking/Multi-tasking, such as doing 2 tasks at the same time • Visuo-spatial tasks, such as solving puzzles or using building blocks • Executive skills, such as planning, organizing, flexible thinking • Getting disoriented, such as not knowing the date or where you are |
Overactive/impulsive | Robert Waltereit (lead), Stacey Bissell (co-lead), Katie Smith, Megumi Takei | • Overactivity/hyperactivity, such as being constantly on the go • Restlessness or fidgetiness, such as wriggling or squirming • Impulsivity, such as butting in, not waiting turn |
Scholastic | Jennifer Flinn (lead), Peter Davis (co-lead), Shoba Srivastava | • Reading • Writing • Spelling • Mathematics |
Wraparound psychosocial | Stephanie Vanclooster (lead)*; Sebastián Cukier (lead)**, Chris Kingswood (co-lead), Eva Schoeters, Katie Smith | • Both for individuals with TSC and their caregivers: • Low self-esteem • Very high levels of stress in the family • Very high levels of stress in relationship with siblings • Very high levels of parent–child relationship difficulties • Very high levels of parent-to-parent/partner relationship difficulties • Very high levels of stress leading to difficulty for family to connect with others in the community • Very high levels of stress leading to difficulty to progress in career |