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Behavior & Sensory Support

What you need to know

See Tuberous Sclerosis Alliance: Behavioral Issues and TSC. 

Most individuals with TSC usually exhibit at least one mental health issue. Many children with TSC have behavioral issues. 

Autism Spectrum Disorders (ASD)
  • Autism (ASD) is diagnosed in about 25-60% of children with TSC. TSC is considered one of the leading genetic causes of ASD.
  • There is a wide range of abilities in this diagnosis.
    • Individuals with very significant global intellectual disabilities have ASD up to 50% of the time.
    • Social communication difficulties are found in 44-69% of individuals with TSC.
    • Some individuals with ASD may have problems fitting into school and life.
  • Findings include:
    • Poor eye contact
    • Repetitive and ritualistic behaviors
    • Speech and language delays
  • Treatment options vary based on individual’s age and ability.
    • Foster skills in the three main areas of difficulty:
      • Social skills
      • Communication skills
      • Imaginative play
    • Ensure repetitive or obsessive behaviors don’t become too prominent or interfere with family life.
    • Treatment aims to help parents support their child’s development.
Mood related difficulties

Anxiety:

  • Individuals with TSC have a high rate of anxiety.
  • They may have a co-existing mental health condition, such as depression.
  • In older children, anxiety and mood related disorders are more common.
    • May appear as excessive worry, unexplained panic attacks, acting out

These may be helpful: What are Anxiety Disorders?; WorryWiseKids.org.

Aggressiveness/Disruptive behaviors (40-50%):

  • Can have outbursts and behaviors that cause self-injury
  • Some medications can cause aggressive behaviors
  • May appear as increased activity, restlessness, impulsivity, aggressive outbursts, temper tantrums, and self-injurious behaviors

Depression:

  • Depression often occurs with other mental health issues like anxiety.

This may be helpful: What is Depression?

OCD:

  • May have rituals and repetitive behavior

This may be helpful: Obsessive-Compulsive Disorder Signs & Symptoms

ADHD
  • As many as 25-50% of children with TSC have some signs of ADHD.

This may be helpful: What is Attention Deficit Hyperactivity Disorder (ADHD, ADD)?

What you can do

Strategies for children who have autism
  • Provide information and discuss similarities and challenges as a class.
  • Help develop confidence and focus on strengths.
  • Provide positive reinforcement.
  • Be consistent with directions, rules, and discipline. Ensure they have positive behavioral supports.
  • Teach child appropriate social behaviors/skills (role model, friend groups).Help them nurture friendships.
  • Teach how to recognize facial expressions, body language, and moods in self and others.
  • Ensure effective communication systems and AAC devices are available if needed.
  • Ensure the right people are trained in using the AAC device, including the child.
  • Ensure needed supports for success in school.
  • Ensure the team has training, support, meeting time.
  • Ensure interventions match the child's unique needs.
Strategies for mood disorders
  • Early identification and behavioral interventions
  • Unstructured situations may be difficult for individuals with mood and anxiety disorder (e.g., school assemblies, in-between classes, on bus, and on field trips).
    • Watch for overload
    • Prepare them ahead of time, offer supports, redirect behaviors
Strategies for ADHD
  • Seat student where distractions are minimal
  • Post schedule and assignments in easy viewing
  • Review daily schedule visually and verbally
  • Give reminders of schedule throughout the day
  • Review homework schedule
  • Prepare for transitions
  • Let student know when transitions are going to occur (alerts at 15, 10, and 5 minutes before they occur)
  • Help with daily organization
  • Pair student up with well-organized peer
  • When giving instructions, provide a visual example of the instructions to ensure understanding
  • Break instructions into steps
  • Provide priority lists for large assignments
  • May need extra time for test
  • May need small manipulative to help focus when listening 
  • Use communication book between teachers and parents
  • Develop rules and routines