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What is Childhood Disintegrative Disorder (CDD)?
Childhood disintegrative disorder, also known as Heller’s syndrome or disintegrative psychosis, is a rare neurodevelopmental disorder affecting children between the ages of 2 and 10. It is a type of autism spectrum disorder (ASD) characterized by a sudden and profound loss of previously acquired skills in multiple areas, including social skills, language, motor skills, and cognitive abilities.
Children develop normally until around the age of 2, after which they experience a regression in their skills. The loss of skills can be gradual or sudden and occur in one or multiple areas. CDD is highly uncommon in the United States, affecting about two children per 100,000. It is also more prevalent in boys.
CDD is a condition that was first described in the late 19th century. However, it was not until the 1990s that it was officially recognized as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM). In the DSM-IV, published in 1994, CDD was classified as a pervasive developmental disorder (PDD) along with autism, Asperger’s syndrome, and Rett’s disorder.
Childhood disintegrative disorder was first formally recognized as a distinct disorder in the DSM-IV in 1994. However, the DSM-5 incorporated it into the category of ASD, which includes two broad categories of symptoms: persistent deficits in social communication and social interaction and restricted, repetitive patterns of behavior, interests, or activities.1
Symptoms of Childhood Disintegrative Disorder
Childhood disintegrative disorder symptoms involve a significant loss of previously acquired skills in multiple areas of functioning. This loss typically occurs over months rather than days, and the decline is often severe enough to interfere with the child’s daily life. CDD symptoms can vary widely among individuals and may be more pronounced in some areas than others.
Below are some common childhood disintegrative disorder symptoms:2
- Language and communication: A child with CDD may lose the ability to speak or understand language. They may also have difficulty using and understanding nonverbal communication, such as gestures or facial expressions.
- Social skills: A child with CDD may lose the ability to interact with others socially. They may show a lack of interest in playing with other children and may have difficulty making eye contact or understanding social cues.
- Motor skills: A child with CDD may experience a decline in their motor skills. They may have difficulty with coordination and experience tremors or other involuntary movements.
- Self-care skills: A child with CDD may struggle with self-care skills, such as dressing, bathing, and using the toilet.
- Behavioral changes: A child with CDD may display behaviors that are unusual or repetitive, such as hand flapping, rocking, or spinning.
Insurance may be able to help cover the cost of therapy. Find out if your insurance provider can help with the costs by filling in our confidential insurance verification form below.
Causes & Risk Factors for CDD
The exact causes of childhood disintegrative disorder are not yet fully understood. However, researchers believe a combination of genetic and environmental factors may contribute to its development. CDD is a rare disorder; many children with developmental delays or regression don’t have it. Other conditions, like other autism disorders and language disorders, may have similar symptoms to CDD.
Below are some of the potential causes and risk factors associated with childhood disintegrative disorder:3
- Genetic factors: Studies have suggested that there may be a genetic component to CDD, with some cases occurring in families with a history of the disorder or other developmental disorders. In addition, boys are more likely to develop CDD than girls.
- Neurological factors: CDD is thought to involve abnormalities in brain development, including changes in the structure and function of specific brain regions. For example, some research has suggested that CDD may be associated with abnormalities in the temporal lobes involved in language and memory processing. Other studies have suggested that dysfunction in the prefrontal cortex, which handles social and emotional processing, may also be involved in CDD.
- Environmental factors: Some researchers believe that exposure to environmental toxins or infections during early childhood may increase the risk of developing CDD.
- Other medical conditions: Children with certain medical conditions, such as epilepsy or metabolic disorders, may be at a higher risk of developing CDD.
Diagnosis & Treatment for Childhood Disintegrative Disorder
To diagnose childhood disintegrative disorder, a child must meet the diagnostic criteria outlined in the DSM-5, including a significant loss of acquired skills in multiple areas of functioning, like language and social and motor skills, over months. In addition, the loss of skills must be severe enough to interfere with the child’s life and be unexplained by another condition or developmental disorder.
Because childhood disintegrative disorder symptoms overlap with symptoms of other developmental disorders and because the condition is rare, an accurate diagnosis can be challenging. Therefore, it’s essential to seek a comprehensive autism evaluation from a qualified healthcare professional, like a pediatrician, child psychiatrist, neurologist, or autism specialist.
The healthcare professional may use a variety of tools to help diagnose CDD, including:
- Developmental assessments: Standardized tests assess the child’s developmental level, including their language, motor, social, and self-care skills.
- Behavioral assessments: The healthcare professional may observe the child’s behavior and look for patterns characteristic of CDD, such as repetitive movements or a lack of interest in social interaction.
- Medical evaluations: Medical tests, such as blood or brain imaging, rule out other medical conditions causing the child’s symptoms.
The specific childhood disintegrative disorder treatment plan will depend on the child’s individual needs and symptoms. A healthcare professional will develop a plan that addresses the child’s unique needs and maximizes their development and social interaction potential. A range of therapies can help manage symptoms, support development, and improve the child’s quality of life, including the following:4
- Behavioral Therapy: Approaches such as Applied Behavior Analysis (ABA) therapy focus on changing behaviors causing problems or reinforcing positive behaviors. ABA therapy can help address repetitive behaviors, anxiety, and difficulty with social interaction.
- Speech Therapy: Speech therapy focuses on improving communication skills. It can be helpful for children diagnosed with CDD who are struggling with language development or communication difficulties.
- Occupational Therapy: This therapy focuses on improving a child’s ability to perform daily tasks and develop independence. Occupational therapy can be helpful if your child is struggling with self-care skills, such as dressing or feeding themselves.
- Medication Management: There are no medications that can cure CDD, but medication can help manage symptoms such as anxiety, depression, and hyperactivity.
- Parental Support: Parents and caregivers play a crucial role in supporting children with CDD. Support groups and parent training programs can help you develop strategies for managing your child’s behavior and promoting their development.
Outlook & Treatment Success Rates for CDD
Childhood disintegrative disorder is a severe and rare developmental disorder, and the outlook for children with CDD is generally poor. There is no cure for CDD. The condition is typically managed through a combination of therapies that address the child’s specific needs and symptoms.
While treatment can help manage symptoms, improve communication and social skills, and enhance the quality of life, the long-term outlook for children with CDD is not encouraging. Some children will live well into adulthood while requiring lifelong support. However, it’s important to note that the severity of symptoms and prognosis can vary widely, and life expectancy can increase with the appropriate medical care and support.
Unfortunately, childhood disintegrative disorder seems to be the rarest and least understood of the autism spectrum disorders (ASD). Further research is necessary. However, early intervention with intensive behavioral therapies such as Applied Behavioral Analysis (ABA) and parental involvement has improved communication and social skills in some children with CDD.5
Does Insurance Cover Treatment for Childhood Disintegrative Disorder?
Insurance coverage for childhood disintegrative disorder treatment can vary depending on your insurance policy and the specific treatment sought. In general, most insurance plans will cover some aspects of treatment for CDD, including medications, doctor’s visits, and hospitalizations. However, some benefits may be more limited or require pre-authorization. Additionally, some insurance plans may have coverage limitations or exclusions.
Athena Care is in-network with most major insurance companies. With multiple psychologist offices in Tennessee, finding the quality care you need is convenient. Filling out our free and confidential online insurance verification form is the best way to determine the details of your childhood disintegrative disorder treatment coverage.
After you submit the no-obligation form, a care coordinator will review your insurance plan and contact you to discuss your options. Rest assured, all submitted or exchanged information will remain confidential.
- Applied Behavior Analysis Programs Guide. “What Is Childhood Disintegrative Disorder (Heller’s Syndrome)?” Applied Behavior Analysis Programs Guide, 12 Oct. 2022, www.appliedbehavioranalysisprograms.com/faq/what-is-childhood-disintegrative-disorder.
- Ash. “What Is Childhood Disintegrative Disorder? Symptoms, Treatment and More.” Autism 360, 15 Jan. 2015, www.autism360.com/childhood-disintegrative-disorder.
- “Childhood Disintegrative Disorder.” Center for Occupational and Environmental Medicine, Feb. 2017, coem.com/blog/childhood-disintegrative-disorder.
- Bernstein, Bettina E., DO. “Childhood Disintegrative Disorder Treatment and Management: Approach Considerations, Pharmacologic Therapy, Novel Therapies.” MedScape, 20 Nov. 2018, emedicine.medscape.com/article/916515-treatment.
- Nelson, Kaylee A. “Parental Involvement in Early Intervention Programs for Children With Autismwith Autism.” University of St. Thomas, Minnesota, 2013, ir.stthomas.edu/cgi/viewcontent.cgi?article=1237&context=ssw_mstrp.
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