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Development & Outlook

The range of outcomes in individuals with CHARGE is as broad as it could possibly be.

  • Some individuals need extensive care throughout their lives.
  • Some become independent adults with families and professions.
  • Most are somewhere in between – taking longer to achieve things and needing at least some degree of support throughout their lives.

Deafblind: An Important Educational Term

“Deafblind” does NOT always mean total deafness and total blindness, but rather refers to a combination of hearing loss and vision loss. Although most children with CHARGE have some residual hearing and/or vision, the majority can be designated “deafblind” since they have combined hearing and vision loss.

The key to educational and social success is establishment of an effective communication system.

The primary obstacles to establishing a formal communication system in CHARGE are:three young ladies with CHARGE sit around a table chatting - two of them are signing

  • Combined hearing and vision loss (deafblindness)
  • Late referral to appropriate educational resources – sometimes because of needing to deal with ongoing medical issues
  • Lack of information about deafblindness among medical and educational professionals

There is extensive information about dealing with the education system (starting with Early Intervention) in the Management Manual for Parents and in For Families.

Deafblind Influence on Development –
Sensory Deficits, the Communication Bubble and Developmental Delay

Sensory deficits in CHARGE

  • Hearing loss
  • Vision loss
  • Balance disturbances
  • Decreased or absent sense of smell and taste
  • Tactile defensiveness
  • Interoception


a mother leans in close to her baby boy in a stroller to communicate with him

Communication Bubble: Vision, hearing, and smell are the distance senses. If all are impaired, the child does not know what is happening unless the person or object is within the “communication bubble.” The bubble is how far out and how well and how the child sees, hears and smells.



Multiple Delays, Multiple Causes

  • Gross motor milestones (head control, sitting, walking, etc) will be delayed due to:A young boy with CHARGE uses a walker to walk on a carpet
  1. Multiple hospitalizations and illness
  2. Vestibular dysfunction (balance)
  3. Upper body hypotonia (weakness)
  4. Vision loss
  • Language acquisition is delayed due to hearing impairment.
  • Reading and understanding the environment may be delayed due to visual impairment.
  • Social development is delayed due to being unable to “oversee” and “overhear” information, as well as being unable to smell body odors if anosmia (lack of sense of smell) is present.

Range of Developmental/Functional Outcomes:

  • Early childhood: Although nearly all children with CHARGE will be delayed, we do not know the true incidence of cognitive impairments because the appropriate educational programs are often not available early in the lives of children who are deafblind. “Approximately 50% of individuals with CHARGE have average cognitive functioning, while 25% experience moderate delays, and 25% have very poor cognitive outcomes.” (Salem-Hartshorne, 2011, CHARGE Syndrome: First Edition)
  • Assessment: Those with no vision impairment or no hearing impairment often have normal intelligence even as measured by standardized testing. No standardized test exists for evaluating individuals with combined visual and hearing losses. State Deafblind projects can help arrange appropriate testing for children with CHARGE. Early testing should not be used as a predictor of intelligence or ultimate outcome. People with deafblindness take longer to incorporate information from the world. Children who appear far behind their typical peers may eventually catch up. The best evaluations of individuals with CHARGE are done by those few psychologists who understand deafblindness or those who are willing to work with teachers of the deaf/hard of hearing and teachers of the blind/visually impaired. It is imperative to make sure the student understands the instructions and the psychologist knows which test elements may be outside the student’s possible experience.
  • Other: Some children with CHARGE do have specific learning disabilities. OCD-like (obsessive compulsive disorder) behaviors may be a common feature of CHARGE. Autism is at least as common in children with CHARGE as in the general populations.
  • Adults: Many adults with CHARGE live with family or in group homes where they have significant support. Many adults with CHARGE are college graduates and working in a variety of professional fields. A number of adults have accurately diagnosed themselves with CHARGE. There are adults with CHARGE who are married, some with families.
    “Hey, I Reached Adulthood, Now What?” Adults Who Have CHARGE Syndrome Talking About School, Job, Living and Independence by Claudia Junghans and Rob Last