Coping and support

By Mayo Clinic Staff

Child disintegrative disorder is a rare, serious condition. As a parent or family member affected by this disorder, you'll need support to cope with the condition. Here are some suggestions:

  • Learn about the disorder. Although there's limited information about childhood disintegrative disorder, learn as much as you can. Then you can make the best choices and be an advocate for your child.
  • Get advice from professionals. Work with an experienced team of doctors, therapists and teachers, so they can guide you as you make decisions related to your child's care. They can help you keep abreast of new medications and therapies so your child receives the best available treatments.
  • Seek support from other families. Other families who have children with autism spectrum disorders (ASD) may be a source of emotional support and provide encouragement and helpful suggestions. Many communities have support groups for parents and families with children who have ASD.
  • Take time for yourself and other family members. Caring for a child with childhood disintegrative disorder can be a full-time job that stresses your marriage and family life. It's important to take care of yourself and spend time with your other loved ones and friends. Schedule time for family activities, enjoy a favorite hobby, exercise or just relax. It may also help to seek respite care on a regular basis to prevent caregiver burnout.
March 06, 2013