Kabuki and Autistic-type Behaviors

Author(s): 
Margot Schmiedge
Jen Morton

The spectrum of characteristics associated with Kabuki syndrome is extremely varied. As with any newly described syndrome it is initially difficult to know if certain presenting characteristics are typical of the syndrome or simply typical for that individual. However, it has become increasingly evident that many individuals with Kabuki display autistic-type behaviors. Although few children have been officially diagnosed with autism, virtually all children have some degree of sensory processing disorder.

What is autism?

Autism is a spectrum disorder. This means the symptoms and characteristics can present themselves in a wide range of combinations and from mild to severe. In other words, two children with the same diagnosis can be very different from each other and have varying abilities/disabilities. Autism is a combination of several developmental challenges.

According to the Autism Society of America, the following areas are among those that may be affected:

Communication

  • language develops slowly or not at all
  • uses words without attaching the usual meaning to them
  • communicates with gestures instead of words
  • short attention span

    Social Interaction

  • spends time alone rather than with others
  • shows little interest in making friends
  • less responsive to social cues such as eye contact or smiles

    Sensory Impairment

  • may have sensitivities in the areas of sight, hearing, touch, smell, and taste to a greater or lesser degree

    Play

  • lack of spontaneous or imaginative play
  • does not imitate others' actions
  • does not initiate pretend games

    Behaviors

  • may be overactive or very passive
  • throws tantrums for no apparent reason
  • perseverates (shows an obsessive interest in a single item, idea, activity or person)
  • apparent lack of common sense
  • may show aggression to others or self
  • often has difficulty with changes in routine

    Behaviors often associated with children with Kabuki

    Communication

  • almost all families report language delays

    Social Interaction

  • some families report their child as being very social, others report their child as having little interest in friendships, preferring to play alone, often able to speak more freely with adults than peers
  • poor eye contact (50% according to survey done by KSN)
  • poor at understanding the unspoken "rules" of socialization
  • poor at understand the give-and-take of a conversation or how to end one
  • very literal thinkers, have difficulty thinking abstractly
  • unable to 'read between the lines'

    Sensory Impairment

  • hypersensitive to touch (such as play dough, walking barefoot, etc)
  • aversion to loud noises
  • aversion to particular smells (cooking smells, etc)
  • hypersensitive to visual stimuli
  • aversion to particular food tastes and textures (often causing gagging)
  • self-stimulatory behaviors such as hand flapping, head shaking, rocking, repeating phrases over and over (over 50% according to survey done by KSN)
  • self injurous behaviors such as biting self and head banging
  • very oral, many chew on non-food items (over 60% according to survey done by KSN)

    Play

  • some do not seek out friendships, preferring to play alone or with adults
  • others seek friendships but prefer younger children
  • many like to play the same thing or watch the same videos over and over

    Behaviors

  • extreme need to know what to expect throughout the day and exact schedule of events (about 60% according to survey done by KSN)
  • repeating of questions over and over
  • difficulty waiting
  • interrupting often
  • talking to self (about 60% according to survey done by KSN)

    What does this mean for the child with Kabuki?

    It is important to know that developmental delay in general can be accompanied by several types of symptoms and behaviors that one sees with autism (speech and language delay, self-stimulatory behaviors, social impairment, inappropriate behavior). It is true that autism is more easily recognized today and if a child fits into a set of criterion, a diagnosis of autism may come about. This is not to say that the autistic diagnosis is permanent or that it conflicts with the Kabuki diagnosis. With skill development and ongoing intervention, a child may mature and gain ground in an area so that they no longer 'fit' into the autism heading. The fact that our children have Kabuki syndrome is the reason they are demonstrating autistic-like tendencies in the first place. Autism is not necessarily a separate label. More than likely, ALL of our children at some point or other are demonstrating behaviors that could be considered autistic-like. Whether our children have been given an autism label or not, the types of therapy and intervention that we would seek to assist with their areas of need are the same. Many autism treatment approaches are very beneficial for all children facing issues in any of these functional areas.

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