What Is Childhood Disintegrative Disorder?
Childhood disintegrative disorder, also known as Heller's syndrome or disintegrative psychosis, is a rare disorder that’s part of a larger developmental disorder category on the autism spectrum. This condition tends to affect children over the age of 3, or those with at least two years of normal development without concerns. This disorder is associated with seizure activity, and in at least half of cases, abnormal EEG results are present. EEG, or electroencephalography, is a method of recording electrical activity in the brain.
Childhood disintegrative disorder, or CDD, is listed under autism spectrum disorders in the Diagnostic and Statistical Manual (DSM-5) by the American Psychiatric Association. New descriptions due to a better understanding of autism have led to better diagnosing of spectrum disorders. These advances in the understanding of autism spectrum disorders have led to the following disorders falling under autism spectrum disorders in the Diagnostic and Statistical Manual on the American Psychiatric Association website:
- Autistic Disorder: Autism is a disorder that tends to cause problems with social interaction. It is characterized by repetitive behaviors and may cause problems with communication.
- Asperger’s Syndrome: This developmental brain disorder is often characterized by problems with behavior, social skills, and coordination.
- Pervasive Developmental Disorder: This disorder is often characterized by avoidance of eye contact, problems controlling emotions, a high pitched or flat tone of voice, problems communicating thoughts through language, and repetitive behaviors.
- Childhood Disintegrative Disorder: Childhood disintegration disorder (CDD) is characterized by a loss of achieved developmental skills that usually occurs after the age of 3.
The symptoms of CDD tend to be severe and obvious, and researchers are still searching for the cause of this disorder.
Children with this disorder tend to experience a sudden reversal in social skills, motor skills, and language skills.
Before modern research into CDD, it was thought that this condition was a medical disorder with identifiable medical causes. Eventually, researchers realized that the same medical or neurological factors do not always cause CDD. The symptoms of this disorder are well documented, but the cause is not.
The Symptoms Of Childhood Disintegrative Disorder
The symptoms of childhood disintegrative disorder revolve around a loss of achieved skill sets. The symptoms have a late onset and become obvious at or after the age of 3 after the child has learned to speak, walk, eat without help, and use the bathroom. The symptoms can become severe, and seizures and abnormal EEGs are common. Speech impediments are a common concern that should be treated as soon as possible. Although the disorder usually arises between the ages of 3 and 4, it can occur up to the age of 10.
The following is a list of common symptoms of childhood disintegrative disorder:
- Loss of expressive language skills, or the ability to speak
- Loss of receptive language skills, or the ability to understand
- Loss of ability to communicate effectively and develop peer realtions
- Loss of social skills, inability to interact with others, and appearance of ignoring others
- Lack of communicating needs, such as hunger, fatigue, or thirst
- Lack of ability to control emotions
- Loss of the ability to walk
- Loss of the ability to understand language
- Loss of hand-eye coordination
The symptoms of this disorder can range in severity. A child who has lost their ability to wash themselves, brush their teeth, use the toilet, maintain bowel or bladder control, or feed themselves may have symptoms of CDD. This is a complex disorder and a rare condition characterized by a reversal in a child’s development after having apparently normal development before. These symptoms may seem to follow new seizure activity or a long period of illness. However, they may also appear out of the blue.
A specialist must diagnose this condition by careful analysis of the symptoms, the onset, and the severity. A primary care doctor, therapist, clinical assistant professor, or medical director should be able to guide you toward the correct specialist. They will likely use differential diagnosis to ensure accuracy, because, like schizophrenia spectrum disorders, CDD has many crossover symptoms. Although the symptoms of CDD progress over time, some individuals experience slower progression of developmental delays than others.
The rarity of this disorder can make it difficult to give an exact prognosis. Some children regress faster than others, and the extent of regression can vary from case to case. Research into this disorder shows that some children may stop regressing and re-learn skills, while others continue to regress. It can help to recognize the symptoms of CDD as early as possible so that a diagnosis can be made and therapy can begin.
Treatment Of CDD
There is currently no cure for CDD, but early intervention and therapy may help to lessen the severity of the symptoms children develop. Treatment for CDD tends to focus on slowing the loss of acquired skills and using therapy to help children re-learn what has been lost. As with most pervasive developmental disorders, some children respond better than others, but every bit of progress can help.
The therapies used for CDD tend to be similar to those used for the treatment of autism. Also, medications such as anti-convulsants may be used if seizures are diagnosed, and antipsychotics and selective serotonin reuptake inhibitors may be prescribed to control other severe behavioral problems that may develop.
Therapy for CDD often includes:
- Medication therapy
- Behavioral therapy
- Environmental therapy
Behavioral therapy may be used to slow down the loss of skills and help a child re-learn skills and adaptive behaviors when possible. Qualified, certified professionals develop plans for slowing loss and re-teaching skills using a system of rewards for desired behavior. Speech therapists, occupational therapists, and physical therapists have different types of expertise to deliver customized therapy. A behavior analyst may first study a child's behaviors and then use that analysis to develop a care plan.
This type of therapy is designed to provide sensory enrichment that can ease the symptoms of CDD. Sensory enrichment therapy is often used to improve the quality of life of those with autism spectrum disorders or developmental disorders. The exact type of sensory enrichment is usually developed by a specialist who provides a customized experience. This therapy is not typically designed to slow down the loss of skills or help a child re-learn skills that are lost; it is usually meant to provide a means of interaction and communication that improves quality of life.
Family And In-Home Caregivers
Children with this disorder can respond well to therapy, but it is not yet known why some respond better than others. This condition is rare, and research is based on the limited number of cases available to study. Support for parents of children with CDD is often essential. Support groups for families can be an invaluable source of information and connection.
Family therapists can also be a useful resource for families of children diagnosed with CDD or another intellectual disability. The diagnosis can be overwhelming for loved ones, but talking with a qualified family therapist can help everyone through the challenges associated with CDD. Family therapy or group talk therapy can provide an outlet for families to discuss all the changes they are facing after receiving diagnosis. Siblings often have to adjust to new routines as parents work to accommodate the changes to their daily routines. All families must learn about the disorder and learn how to manage life with the changes taking place.
At some point, the regression experienced by those with CDD usually begins to affect bodily function, peers, motor skills, and bowel and bladder control. An individual with this condition may need extra support from a professional caregiver as they grow older. An in-home caregiver can make it easier as both parents and the child age.
An in-home caregiver is someone who tends to know all about the disorder, and they are trained to handle any situation that arises. This extra help can give parents and other family members time to relax and take care of the other demands of life. An in-home caregiver also gives the child interaction with someone other than family; this can be therapeutic as well.
Another option for care is a personal aide. A child with CDD may require around-the-clock supervision and care. A personal caregiver or personal aide is someone who provides that supervision and care when the primary caregiver cannot. Children with autism spectrum disorders often attend school with aides who help them in class. Depending on the regression, a child with CDD may still attend school for a period, and if the disorder stops progressing, they may remain in school.
In-home or personal aides tend to deliver the same quality of care and supervision the primary caregiver does. They usually provide this care in the absence of the primary caregiver or alongside the primary caregiver. This type of care can help individuals with this disorder handle life situations, providing quality of life and exposure to new situations.
If you have a child with childhood disintegrative disorder (CDD), you don’t have to face this challenge alone. It may help to talk to a therapist with knowledge and experience helping families with the challenges associated with CDD. If leaving the house is difficult due to childcare, you may opt for online therapy, which has been proven to be just as effective as in-person therapy. With BetterHelp, you and your family can talk to a therapist from the comfort of your home via audio or video chat. Also, if questions arise in between sessions, you can contact your therapist via in-app messaging, and they’ll get back to you as soon as they can.
If you know you’d like to talk to a therapist about CDD, other mental disorders, or if you simply have questions about the therapy process, you can contact BetterHelp to get answers to your questions. With BetterHelp, you can get matched with a therapist with experience helping families facing the challenges of CDD and autism spectrum disorders. Take the first step and reach out today.
Frequently Asked Questions
How does Childhood Disintegrative Disorder differ from Autism Spectrum Disorder?
Are there any support groups for families of children with Childhood Disintegrative Disorder in the US?
What impact does Childhood Disintegrative Disorder have on a child's development?
How do you manage the behavior of a child with Childhood Disintegrative Disorder?
What is the prognosis for a child with Childhood Disintegrative Disorder?
Can children with Childhood Disintegrative Disorder attend regular schools?
What resources are available for families of children with Childhood Disintegrative Disorder in the US?
Is medication used to treat Childhood Disintegrative Disorder?
What are the long term effects of childhood disintegrative disorder?
What is the typical onset of children with childhood disintegrative disorder?
How common is childhood disintegrative disorder diagnosed?
Can children with Childhood Disintegrative Disorder attend school?
How does Childhood Disintegrative Disorder affect a child's social skills?
Can Childhood Disintegrative Disorder be prevented?
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