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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 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.
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 Jan. 21, 2013.
- Fact sheet: Childhood disintegrative disorder (CDD). Illinois Autism Training & Technical Assistance Project. http://www.illinoisautismproject.org/. Accessed Jan. 21, 2013.
- Sadock BJ, et al. Kaplan & Sadock's Comprehensive Textbook of Psychiatry. 9th ed. Philadelphia, Pa.: Wolters Kluwer Health Lippincott Williams & Wilkins; 2009. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=booktext&D=books2&AN=01412563/9th_Edition/5&XPATH=/OVIDBOOK%5b1%5d/METADATA%5b1%5d/TBY%5b1%5d/EDITORS%5b1%5d. Accessed Jan. 21, 2013.
- Autism spectrum disorders (ASDs): Condition information. Eunice Kennedy Shriver National Institute of Child Health and Human Development. http://www.nichd.nih.gov/health/topics/autism/conditioninfo/Pages/default.aspx. Accessed. Jan. 21, 2013.
- Charan SH. Childhood disintegrative disorder. Journal of Pediatric Neurosciences. 2012;7:55.
- Augustyn M. Terminology, epidemiology, and pathogenesis of autism spectrum disorders. http://www.uptodate.com/home. Accessed Jan. 21, 2013.
- Pervasive developmental disorders information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/pdd/pdd.htm. Accessed Jan 21. 2013.
- A parent's guide to autism spectrum disorder. National Institute of Mental Health. http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml. Accessed Jan. 21, 2013.
- Augustyn M. Diagnosis of autism spectrum disorders. http://www.uptodate.com/home. Accessed Jan 21, 2013.
- Huffman LC, et al. Management of symptoms in children with autism spectrum disorders: A comprehensive review of pharmacologic and complementary-alternative medicine treatment. Journal of Developmental & Behavioral Pediatrics. 2011;32:56.
- Kupfer DJ, et al. DSM-5 — The future arrived. JAMA In press. Accessed Feb. 25, 2013.
- Huxsahl JE (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 5, 2013.
- Swintak CC (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 21, 2013.
- Rosman NO, et al. Childhood disintegrative disorder: Distinction from autistic disorder and predictors of outcome. Journal of Child Neurology. In print. Accessed Feb. 24, 2013.
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