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Coping and support
By Mayo Clinic staffChild disintegrative disorder is a rare, serious condition. As a parent or family member affected by this disorder, you'll find it important to have support to cope with the condition. Here are some suggestions:
- Learn about the disorder. There's limited information about the cause of childhood disintegrative disorder. However, learning about treatment options will give you the knowledge to be an advocate for your child.
- Find a team of trusted professionals. You'll find it helpful to have a knowledgeable team of doctors, therapists and teachers to guide you as you make decisions related to your child's care. They can help you keep abreast of new medications and therapies so that you can give your child the best available treatments.
- Seek support from other families. Other families who have children with autism spectrum disorders may be a source of emotional support and provide encouragement and helpful suggestions. Support groups are available in many communities for parents and families with children who have autism spectrum disorders.
- Take time for yourself and other family members. Caring for a child with child disintegrative disorder can be a full-time job that places stress on your marriage and family life. It's important to take care of yourself and spend time with your spouse or significant other, as well as other family members. Schedule time to participate in family activities, enjoy a favorite hobby, exercise or just relax. It may also be beneficial to seek respite care on a regular basis in order to prevent caregiver burnout.
References
- Childhood disintegrative disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR. 4th ed. Arlington, Va.: American Psychiatric Association; 2000. http://www.psychiatryonline.com. Accessed May 18, 2010.
- Pervasive developmental disorders. In: Hales RE, et al., eds. The American Psychiatric Publishing Textbook of Psychiatry. 5th ed. Arlington, Va.: American Psychiatric Association; 2008. http://www.psychiatryonline.com. Accessed May 18, 2010.
- Childhood disintegrative disorder. In: Kliegman RM, et al. Nelson Textbook of Pediatrics. 18th ed. Saunders Elsevier; 2007. http://www.mdconsult.com/das/book/body/203193401-3/1005176842/1608/73.html#4-u1.0-B978-1-4160-2450-7..50031-1--cesec12_466 Accessed May 18, 2010.
- Pervasive developmental disorders. In: Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry. St. Louis, Mo.: Mosby; 2008. http://www.mdconsult.com/das/book/body/203193401-5/1005177285/1657/637.html#4-u1.0-B978-0-323-04743-2..50071-8--cesec46_1911. Accessed May 18, 2010.
- Augustyn M. Terminology, epidemiology, and pathogenesis of autism spectrum disorders. http://www.uptodate.com/home/index.html. Accessed May 18, 2010.
- Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health. http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml. Accessed May 18, 2010.
- Augustyn M. Diagnosis of autism spectrum disorders. http://www.uptodate.com/home/index.html. Accessed May 18, 2010.
- Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. May 18, 2010.
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