Angleman Syndrome and Adulthood

Angelman syndrome is a genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities, epilepsy, short attention span, hyperactivity, hand flapping and speech impairments. It is a rare disorder that affects 1 in 12,000 to 20,000 a year. there are less than 200,000 cases a year and affects all ethnicities and sexes equally.

Typically, there is a severe developmental delay and learning disability as well as near absence of speech and ataxia including ataxia including jerky movements of the arms and legs. People with Angelman syndrome generally have a happy demeanor and an inappropriate laughter.

Life expectancy appears to be normal. As people with Angelman syndrome age, scoliosis tends to worsen and for many people born with epilepsy, there are cases where seizures stop, however, they tend to return as the person gets older.

 

Due to cognitive and medical needs, a person with Angelman syndrome will always require support. Most people with Angelman syndrome attend a day habilitation setting. Support should include

  • staff trained on identifying seizures and providing assistance
  • programs that support the person’s short attention span
  • evaluation for a communication device or a means to communicate
  • support for self-injurious behavior

The following are resources and articles on Angelman syndrome and adulthood

Angelman Syndrome and Obesity (Angelman Syndrome) A 2017 study reporting on a third of Angelman syndrome patients were overweight or obese.

Angelman Syndrome in Adults– (Angelman Syndrome News). An article that describes signs and symptoms of individuals with Angelman Syndrome as they approach adulthood

Anxiety in Angelman Syndrome (Angelman Syndrome News). A topic on anxiety which is commonly observed in individuals with Angelman syndrome including information on triggers and ways to manage anxiety.

AS in Adulthood (AngelmanUKorg). A website describing the transition to adulthood and issues affecting people with Angelman syndrome.

Dental Problems in Angelman Syndrome (Angelman Syndrome News). Information on how people with Angelman Syndrome may be affected and possible treatment plans.

Transitioning to Adulthood Checklist. Created by the Angelman Syndrome Foundation, provides a 4-page checklist resource for students preparing to transition out of school.

It’s hard to imagine a time when children with disabilities did not have access or the rights to an equal education as those students without disabilities. Prior to 1975, many children with disabilities were living in large institutions or went to private schools.

President Gerald Ford signed into the Education For All Handicapped Children Act (Pubic Law-94-142) now knowns as the Individuals with Disabilities Education Act (IDEA). The purpose of IDEA is to protect the rights of infants, toddlers, children and youth with disabilities and to provide equal access to children for children with disabilities. The following list describes the 13 categories of IDEA eligibility including the definition below:

A child with a disability is defined as a child evaluated as having an intellectual disability, hearing impairment (including deafness), a speech or language impairment, visual impairment (including blindness), a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, an other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities who need special education and related services.

  1. Autism means developmental disability significantly affecting verbal and nonverbal communication and social integration, generally evident before age 3, that adversely affect a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
  2. Deaf-blindness- defined as having both visual and hearing impairments. The combination of which causes such severe communication and other developmental and education needs that they cannot be accommodated in special education programs.
  3. Deafness- a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, or with or without amplification, that adversely affects a child educational performance.
  4. Emotional disturbance- a condition exhibiting one or more of the following characteristics over a long period of time
  5. Hearing impairment- an impairment in hearing, whether permanent or fluctuating that adversely affects a child’s performance but that is not included under the definition of deafness.
  6. Intellectual disability- significantly lower general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affect a child’s educational performance.
  7. Multiple disabilities- A combination of impairments (such as intellectual disability-blindness or intellectual disability-orthopedic impairment). The combination causes severe educational needs that they cannot be accomplished in special education program solely for one of the impairments.
  8. Orthopedic impairment- a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by diseases (e.g. Poliomyelitis) and impairment causes (e.g. cerebral palsy, amputations, and fractures or burns that cause contractures)
  9. Other health impairments- having limited strength, vitality, or alertness including a heightened alertness to environmental stimuli that results in limited alertness with respect to the educational environment that is due to chronic or acute health problems such as asthma, ADHD, diabetes, epilepsy, heart condition, sickle cell anemia and Tourette syndrome which adversely affects a child’s education performance.
  10. Specific learningĀ  disability- a disorder inĀ  one or more of the basic psychological processes involved in understanding or in using language spoken or written that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell or to do mathematical calculations including conditions such as perceptual disabilities, brain injury, dyslexia and developmental aphasia.
  11. Speech or language impairment- a communication disorder such as stuttering impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
  12. Traumatic brain injury- An acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment or both. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition, language, memory, attention, reasoning, abstract thinking, judgement, problem-solving, sensory, perceptual motor abilities and information processing and speech.
  13. Visual impairment including blindness- an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.