Table 1 Cluster groups in the study

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