Education and Socialization

Children with A-T often enjoy school if proper accommodations can be made. Difficulties in school can be caused by a delay in response time to visual, verbal or other cues; slurred and quiet speech; and impaired fine motor control. Multi-tasking is frequently difficult, and busy classrooms can present special challenges. If a child needs to spend time and energy to maintain balance in a chair, it taxes mental resources. Fatigue can be a major factor in daily functioning. Decisions about proper educational placement (extra help in regular classes, special education placement, or the need for a dedicated assistant) are influenced by the age and needs of the child as well as the local resources available. These decisions should be revisited as often as circumstances warrant.

Despite their many neurologic impairments and sometimes their appearance, most individuals with A-T are very socially aware and socially skilled, and thus benefit from sustained peer relationships. Schools and classrooms where A-T students can maintain friendships throughout elementary, middle, and high school are ideal. Some individuals function quite well despite their disabilities and a few have graduated from college.

It is important to recognize that intellectual disabilities are not regularly a part of the clinical picture of A-T although school performance may be suboptimal because of the many difficulties in reading, writing, and speech. Many of the problems caused by A-T can be compensated for with special attention, as problems are often related to “input and output” issues. Problems with eye movement control make it difficult for people with A-T to read, yet most fully understand the meaning and nuances of text that is read to them. Delays in speech initiation and lack of facial expression make it seem that they do not know the answers to questions. Reducing the skilled effort needed to answer questions, and increasing the time available to respond, is often rewarded by real accomplishment.

Children with A-T are often very conscious of their appearance, and strive to appear normal to their peers and teachers. Life within the ataxic body can be tiring. The enhanced effort needed to maintain appearances and increased energy expended in abnormal tone and extra movements all contribute to physical and mental fatigue. As a result, for some a shortened school day yields real benefits.

School Recommendations

  • All children with A-T need special attention to the barriers they experience in school. In the United States, this takes the form of an IEP (Individualized Education Program).
  • Children with A-T tend to be excellent problems solvers. Their involvement in how to best perform tasks should be encouraged.
  • Speech-language pathologists may facilitate communication skills that enable persons with A-T to get their messages across (using key words versus complete sentences) and teach strategies to decrease frustration associated with the increased time needed to respond to questions (e.g., holding up a hand and educating others about the need to allow more time for responses). Traditional speech therapies that focus on the producing specific sounds and strengthening lip and tongue muscles are rarely helpful.
  • Many children with A-T have full-time classroom aides, especially to help with scribing, transportation through the school, mealtimes and toileting. The impact of an aide on peer relationships should be monitored carefully.
  • Physical therapy is useful to maintain strength and general cardiovascular health. However, no amount of practice will slow the cerebellar degeneration or improve neurologic function. Exercise to the point of exhaustion should be avoided.
  • Hearing is normal throughout life. Audio books may be a useful adjunct to traditional school materials.
  • Early use of computers (starting in preschool) with word completion software should be encouraged. Regular consultations with specialists in Assistive Technology are recommended.
  • Adaptive Physical Education can be helpful. Some students find yoga, with assistance, to be very beneficial both physically and mentally.
  • Practicing coordination (e.g. walking a balance beam or cursive writing exercises) is not helpful.
  • Occupational therapy is helpful for managing daily living skills.
  • Allow rest time, shortened days, reduced class schedule, reduced homework, and modified tests as necessary.
  • Like all children, those with A-T need to have goals to experience the satisfaction of making progress.
  • Social interactions with peers are important, and should be taken into consideration for class placement. For everyone, long-term peer relationships can be the most rewarding part of life; for those with A-T, establishing these connections in school years is critical.

Mental Health and Counseling

Having a child with a disability can be difficult for everyone in the family. People with A-T and family members often benefit from counseling. Sibling and marital issues should be monitored in addition to the well-being of the affected individual. It is recommended that families seek out a professional soon after diagnosis to establish contact with a trusted counselor should services be needed at a future time.

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