Childhood Disintegrative Disorder: An Overview and Guide for Early Childhood Professionals

1. Childhood Disintegrative Disorder:An Overview and Guide for Early Childhood Professionals Ngoc T. Tang

2. Learner Objectives • Describe ways to help parents cope when they learn their child has a disability • Note common symptoms of childhood disintegrative disorder (CDD) • List and explain school services for children with disabilities who meet the criteria

3. Definition Childhood disintegrative disorder (CDD) is a rare condition that affects children most often around ages 3-4, but may range from ages 2-101. As written in the Diagnostic and Statistical Manual of Mental Disorders IV-TR (DSM-IV-TR), there must be: “After at least 2 years of normal postnatal development, significant losses manifest in the following domains: • Expressive or receptive language • Social or adaptive behavior • Bladder or bowel control • Play • Motor skills AND the development of features of autistic disorder”5, 1 8. Mayo Clinic Staff (2006) 5. Findling, R., Leventhal, B., & Scahill, L. (2007) 1. American Psychiatric Association (2000)

4. Background • Originally reported as dementia infantilis by Theodore Heller in 1908. Other known names are: • Heller syndrome • Progressive disintegrative psychosis • Pervasive disintegrative disorder8 • Part of the umbrella group of Pervasive Developmental Disorders (PDD) • Asperger Syndrome • Autistic Disorder • Childhood Disintegrative Disorder • Rett Syndrome • Pervasive Developmental Disorder Not Otherwise Specified10 8. Mayo Clinic Staff (2006) 10. Strock (2004)

5. Background • Similar to autism but is often distinguished by its late age of onset and the severity of regression7 • Since CDD is rare, there is limited information available. Autism, which occurs more frequently, should be used as a guide. • Causes are unknown • Regression can occur abruptly from days to weeks or gradually over an extended period of time8 7. Mouridsen, S.E. (2003) 8. Mayo Clinic Staff (2006)

6. Prevalence • Childhood disintegrative disorder is quite rare • 1.7 per 100,000 children (avg. of four studies)6 • rates have a wide range • Occurs more in males than females4 6. Fombonne (2002) 4. Childhood Disintegrative Disorder

7. Identifying CDD • Warning signs and symptoms • Loss of social skills • Loss of bowel and bladder control • Loss of expressive or receptive language • Loss of motor skills • Lack of play • Failure to develop peer relationships • Impairment in nonverbal behaviors • Delay or lack of spoken language • Inability to start or sustain a conversation 11. Voorhees (2006)

8. Identifying CDD • What parents should do: • Stage 1- Schedule a check-up • Take child routinely for well-child checkups at his primary care provider. • In case of suspected problems, ask for a developmental screening. • Stage 2- Evaluation and diagnosis by team of experts, which may include: • Psychologist, neurologist, psychiatrist, speech therapist, occupational therapist, physical therapist 10. Strock (2004)

9. Getting Help • Stage 3- Diagnosis • Get a notebook to write everything down. No one can remember everything. • Gather information and contacts from specialists. They will help you adjust and offer financial and emotional help. • Join a support group or network. • Stage 4- Treatment • Medication • Therapy • Individualized program for your child 10. Strock (2004)

10. Screening • Stage 1- Developmental screening • Healthcare provider asks parents questions related to normal development, focusing on social, emotional, and intellectual development. Some questions are: “Does your child… • Not speak as well as other children her age?” • Seems unable to tell you what she wants, and so takes your hand and leads you to it, or gets it herself?” • Have trouble following simple directions?” • Prefer to play alone?” • Not play “make-believe” games?” • Not play with toys in a usual way • Act as if she is in her own world?” NICHD • Possible indicators should lead to further evaluation 9. National Institute of Child Health and Human Development (2005)

11. Evaluation • Stage 2- Comprehensive evaluation: • Review of child’s: • Developmental history • Family history • Medical history • Physical examination • Auditory test- to rule out transient hearing loss • Lead exposure- children chew on objects during their oral-motor stage, a cause for mental retardation • Language assessment- communication skills 5. Findling, R., Leventhal, B., & Scahill, L. (2007)

12. Evaluation • Medical examination- • Neurological exam- lesions or possible seizure disorder • Genetics assessment- syndromes • Cognitive- general function10 • Specific measures: • Autism Diagnosis Interview- Revised (ADI-R)- determines child’s social interaction, communication, repetitive behaviors, and age-of-onset symptoms • Autism Diagnostic Observation Schedule (ADOS-G)- contains activities to observe patient’s social and communication behaviors • Vineland Adaptive Behavior Scale- measures child’s functional abilities • Aberrant Behavior Checklist (ABC)- evaluates behavior problems5 10. Strock (2004) 5. Findling, R., Leventhal, B., & Scahill, L. (2007)

13. Diagnosis • Stage 3- Communicating with parents • Telling parents that their child may be having problems and difficulties can be hard for anyone. • Although parents may expect something is wrong, there is usually shock and loss associated with an affirmative diagnosis 5. Findling, R., Leventhal, B., & Scahill, L. (2007)

14. Diagnosis • Minimize stress for Parents • Include parents in the evaluation process as much as possible so they understand what their child can and cannot do • Talk about both strengths and weaknesses • Let parents know that negative reactions are normal and acceptable • Grieving, anger, a sense of loss, shock, helplessness • Parents may need to take a trip to unwind5, 10 5. Findling, R., Leventhal, B., & Scahill, L. (2007) 10. Strock (2004)

15. Diagnosis • Help prepare information and contacts • Parents may not remember all the information you tell them during the first session. • Repeat information several times if necessary • Organize information and write it down so parents can look at it when they are more ready to5, 10 5. Findling, R., Leventhal, B., & Scahill, L. (2007) 10. Strock (2004)

16. Treatment • Stage 4- Treatment is similar to children with autism • Assemble treatment team, adding people similar to the diagnostic team • Include parents and teachers • Review available community resources • Schools • Parent groups • State and private agencies • Respite programs 10. Strock (2004)

17. Treatment • Specialized Members • Language therapy- • Improve social interaction and communication with peers • Develop language skills • Using pictures to help communicate needs • Physical therapy- • Improve movement, posture, balance • Occupational therapy- • Adjusts environment to the child’s needs 5. Findling, R., Leventhal, B., & Scahill, L. (2007)

18. Treatment • Develop a highly structured and individualized program created by the health professional and parent team, that: • Aims to develop areas of difficulty • Builds on child’s strengths and interests • Offers a predictable routine • Teaches skills in simple steps • Provides frequent and positive reinforcement • Suggests structured and attractive activities 10. Strock (2004)

19. Treatment • Behavior management • Reinforce desirable behaviors • Reduce/extinguish undesirable behaviors • Educate parents on how to work with their child 9. National Institute of Child Health and Human Development (2005)

20. Treatment • Medications- • Anti-psychotics are used to treat behavior problems • Typical: haloperidol, thioridazine, fluphenazine, chlorpromazine • Atypical: risperidone, olanzapine, ziprasidone • Anticonvulsants help treat seizures • Carbamazepine, lamotrigine, topiramate, valproic acid • Monitor effects closely to determine benefit • Inform parents of potential side effects8, 10 8. Mayo Staff Clinic (2006) 10. Strock (2004)

21. Treatment • Other interventions • Dietary- some children with autism benefit from certain diets • Casein free diet • A protein found in milk, wheat, oat, rye, barley • More expensive than regular foods • Vitamin B6 supplement with magnesium • Secretin- single dose only • May improve symptoms • Sleep patterns, eye contact, language skills, alertness 10. Strock (2004)

22. Treatment • Key components for effective early intervention • Provide services at earliest possible age • At least 20 hours per week • Parental involvement, training, and support • Focused on social and communication skills • Instruction with individualized goals • Help child generalize skills to other settings 5. Findling, R., Leventhal, B., & Scahill, L. (2007)

23. Financial Assistance • Several types of Medical Assistance (MA) • Also known as Title 19 • Available to parents of children with severe disabilities under age 18 • May cover therapeutic and other medical costs • Available funding varies by location For more information, contact your state Department of Health and Human Services or Developmental Disabilities Administration 3. Autism Society of America (n.d.)

24. Legal Safeguards in Pennsylvania • Individuals with Disabilities Education Act (IDEA)- • Must meet federal and state criteria • Makes it possible for children with disabilities to receive free educational services and devices to facilitate learning • Available from age 3 through high school or age 21 • Contact principal or special education coordinator for qualification assessment 9. National Institute of Child Health and Human Development (2005)

25. Legal Safeguards in Pennsylvania • Individual education plan (IEP)- • Qualification for IEP is easier to receive than IDEA • Required by law for children with special education needs • Written document between the school and family, tailored to the child’s educational needs • States educational goals and environmental changes • Addressing academic achievement, adaptive behavior goals, motor skills, communication skills, • Adaptations to environment such as extending programs into the home, allowing more time on work, extending school year 9. National Institute of Child Health and Human Development (2005)

26. Education • School-based programs • All public schools must provide services for children with disabilities ages 3-21 • Must have an educational evaluation provided by the public school to receive services • Special education for children • Offer highly-structured setting • Use visuals to accompany instruction • Build on child’s interests • Include specialists from treatment team 2. Autism Society of America (2006)

27. Education • Parents • Regular communication between parents and teachers • Utilize notebooks, e-mail, phone calls, meetings • Special education can offer: • Lower student to teacher ratio • Trained and experienced professionals who have worked with children with disabilities • Many environmental and educational adjustments • Special equipment and learning tools • Respite services • Parent training • Emergency care • Resource referral 2. Autism Society of America (2006)

28. Information for Parents • Refer to the brochure handout • Brief information about CDD • Local and national support services • National Alliance on Mental Illness of Pennsylvania Helpline • Provides information, referrals, emotional support- (800) 223-0500 • Autism Society of America (ASA)- • Information and support • Led by parents of children on the autism spectrum • www.autism-society.org • MayoClinic • Information and education • www.mayoclinic.com/health/childhood-disintegrative-disorder/DS00801

29. Information for Parents • Literature • Helpful Responses to Some of the Behaviors of Individuals with Autism by Nancy Dalrymple • Children with Autism: A Parents’ Guide edited by Michael D. Powers • The Complete IEP Guide: How to Advocate for You Special Ed. Child by Lawrence M. Siegel • Siblings of Children with Autism: A Guide for Families by Sandra L. Harris

30. For further information • National Alliance on Mental Illness of Pennsylvania (NAMI)- • Education and support to families with mental illnesses • Education and information to mental health consumers • namipa.nami.org • National Information Center for Children and Youth with Disabilities • Information and resources • www.nichcy.org • U.S. Department of Health and Human Resources • Information and financial aid • www.hhs.gov/children/index.html • National Institute of Child Health and Human Development • Education and research • www.nichd.nih.gov

31. For further information • Literature • Inclusion: 450 Strategies for Success: A Practical Guide for All Educators Who Teach Students with Disabilities by Peggy A. Hammeken • Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities edited by Robert and Lynn Koegel • Behavioral Interventions for Young Children with Autism: A Manual for Parents and Professionals edited by Catherine Maurice, Gina Green, and Stephen C. Luce • Learning and Cognition in Autism edited by Eric Schopler and Gary B. Mesibov

32. References 1. American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision).Washington, DC: Author. 2. Autism Society of America (2006). Building Our Future: Educating Students on the Autism Spectrum. n.d., 1-12. 3. Autism Society of America. (n.d.). Next Steps: A Guide for Families New to Autism. n.d., 1-7. 4. Childhood disintegrative disorder. Retrieved September 15, 2007, from Yale Developmental Disabilities Clinic Web site: http://www.med.yale.edu/chldstdy/autism/cdd.html 5. Findling, R., Leventhal, B., & Scahill, L. (2007). Counseling Points: Current Concepts in the Diagnosis of Autism Spectrum Disorders. Autism Counseling Points 1 (3), 3-11. 6. Fombonne, Eric (2002). Prevalence of childhood disintegrative disorder. SAGE Publications and The National Autistic Society, 6 (2), 149-157.

33. References 7. Mouridsen, S.E. (2003). Childhood disintegrative disorder. Brain and Development: Official Journal of the Japanese Society of Child Neurology, 25, 225- 228. Retrieved September 21, 2007, from PsycInfo database. 8. Mayo Clinic Staff (2006). Childhood disintegrative disorder. Retrieved September 15, 2007, from MayoClinic.com Website: http://www.mayoclinic.com/health/childhood-disintegrative- disorder/DS00801/DSECTION=1 9. National Institute of Child Health and Human Development (2005). Autism Overview: What We Know. n.d., 1-16. 10. Strock, Margaret (2004). Autism Spectrum Disorders: Pervasive Developmental Disorders. NIH Publication No. NIH-04-5511, National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40. 11. Voorhees, Benjamin (2006). Childhood disintegrative disorder. Retrieved September 15, 2007, from Medline Plus Website: http://www.nlm.nih.gov/medlineplus/ency/article/ 001535.htm

34. Contact Information Ngoc T. Tang Masters candidate in Psychology in Education University of Pittsburgh E-mail: ntt2@pitt.edu Replication of any materials requires prior approval.