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What is Childhood Disintegrative Disorder?
Disintegrative disorder in children is also known as Heller’s syndrome. It is an extremely rare condition in which children develop normally up to an age of two and then suffer a severe loss of social, behavioral and communication skills. Childhood Disintegrative Disorder (CDD) is among the 5 major types of autistic disorders and is sometimes referred to as Dementia Infantilis or Disintegrative Psychosis.
In 1908, well before autism evolved as a confirmed diagnosis, Theodor Heller, an erstwhile Austrian Educator, was the first to document what is childhood disintegrative disorder. His observation was that CDD is a multifaceted syndrome affecting many complex areas of a child’s development. It was considered a medical issue until 1994, when CDD was reclassified as a mental health problem under autism spectrum.
Childhood Disintegrative Disorder is rare. It occurs approximately in 1 out of 1,00,000 children, however it is 4 times more prevalent in boys than in girls. Presently, it is believed that CDD may have been over-diagnosed in girls who actually had Rett’s Syndrome as opposed to CDD.
Though the cause of CDD is still unknown, the notion among researchers is that it might be linked to the neurobiology of the brain. Recent studies using ElectroEncephaloGrams (EEG), which measures the electrical activity in the brain caused by nerve transmission, have shown that over half of the children tested using EEGs show abnormalities in the brain activity. It is common for children with CDD to experience seizures, which is another factor in researching the neurobiology of the brain.
Childhood Disintegrative Disorder Symptoms
Although included under the umbrella of autism spectrum disorders, childhood disintegrative disorder symptoms can appear and develop later than other autistic disorders. Children with disintegrative disorder may develop normally till about 2 years old and then show a sudden and/or extreme loss of previously acquired skills in at least 2 of the following areas (please refer to our article on does my child have autism):
- Social Skills: Regression in the ability to relate and interact with others.
- Play Skills: Loss of interest in games and imagination
- Language: Severe decline in the ability to hold a conversation and sometimes even speak
- Motor Skills: Severe and dramatic decline/regression in fine motor skills and walking. May also exhibit
- Tourette’s Syndrome Symptoms
- Bowel & Bladder Control: Regression in potty training, frequent bowel and bladder incidents.
The loss of these skills may occasionally appear over time, however, they tend to occur rapidly over a six to nine months time span. With the loss of gained skills, CDD then begins to resemble many of the different forms of autism. The key difference, however, is that skills lost will perhaps be regained (even with intensive therapy). During this transitional phase of loss in gained skills, your child may become aggressive or have trouble shifting from one task to another.
Examples of Lost Skills in a Child with CDD
Over 90% of children with CDD lose their self-help skills such as:
- Feeding themselves
- Learning new words, un-learning previously used words
- Brushing teeth
- Toilet usage
- Alternate forms of communication such as sign language, expression, etc
If you notice your child beginning to regress in any of the above areas you should consult your physician. The doctor may perform a few tests to rule out epilepsy, head trauma or a brain tumor. Once all these medical reasons are ruled out you will be referred to a practitioner who specializes in child psychiatry to confirm the childhood disintegrative disorder diagnosis.
Childhood Disintegrative Disorder Prognosis
The Cause of CDD is still unknown. In terms of childhood disintegrative disorder prognosis, not a lot of research has been done to date and the information available online is by and large inaccurate. The key reason being that the prevalence if CDD is so rare that it is hard to obtain a reasonable size sample cases of study. Here is what the National Institute of Mental Health had to say about CDD:
It is important that you keep an eye out for the early symptoms of childhood disintegrative disorder so that intervention therapy could be applied at the earliest. Some of the common CDD symptoms that can help prognosis are:
- Loosing Motor skills
- Loosing control on Bladder
- Rapid drop in Social skills
- No longer receptive to Language skills
- Decline in Communication skills
- Repetitive unusual gestures – body language, motion, etc
- Loosing Play skills
- Loosing control on Bowel movements
- Decline in Self care skills
- Recent Speech impairments
- Demonstration of Stereotyped behavior
If you suspect that your child may be exhibiting such symptoms, you should take an Autism test online. Unfortunately, no online test dedicated to CDD is available as of date, so your best chance would be to take a normal Autism Test for Toddlers. This should still give you a very good idea since most of the childhood disintegrative disorder symptoms are same as that of classical autism.
Childhood Disintegrative Disorder Treatment
Unfortunately, no cure exists for childhood disintegrative disorder; only treatment and therapy is provided to relieve and lessen the symptoms. Medications such as anticonvulsant drugs to avoid seizures or antipsychotic medications may be prescribed. Behavioral therapy can be designed to minimize the loss of language/communication, self-care, social skills and, possibly, slow down the regression.
Growing Up with Childhood Disintegrative Disorder
Children with the disorder may eventually need care well into adulthood with sensory activities in everyday life. They may need to reside in a home with others who need everyday care or a long-term nursing care facility as the demands of the disorder usually mean that a family will need a permanent caregiver to assist them. Quite a few options and Government grants are available and many families choose in-home caregiving instead of a nursing facility or group home. One such nonprofit organization for home caregiving in the U.S is Family Caregiver Alliance.
Being Brave & Supportive as Parents
As your child ages so do you! One must take into consideration your health, other family members still at home and the needs of your child with disintegrative disorder. A time may come when bodily functions will deteriorate along with motor skills. Your child may require help with getting up. As you age this may be extremely difficult for you. There is no shame in having an in-home caregiver or eventually placing your child in a nursing facility or institution. Remember, your health is important in order for you to continue providing love and support. Frequent visits will be highly recommended, both for your comfort and the comfort of your child.
Getting Help From Support Groups
There are many support groups to assist you and your families as you go through the process of regression. It can take such a heavy toll on everyone in the family so let others who are willing to help, HELP! Please use the help available to make everyone’s quality of life better. Do your research through the many support groups to find out what is medically available and what the limitations of your health insurance are.
Support groups are filled with people who have already “walked in your shoes” as well as qualified therapists, caregivers, and physicians to assist you. They can supply the information you did not know existed and provide much comfort for you and your family. We have compiled a list of Top Non Profit Autism Organizations that can help you locate the nearest support groups in your locality.
Getting Help From Us
At Deal With Autism, we are babies compared to some of these major Autism organizations in the above link. Though we have limited resources, we would still like to help you on this journey with childhood disintegrative disorder. Here are a few ways you can get help from us:
Contact us by phone or mail
Post a question on our Forum. We have experts who can guide you on what is childhood disintegrative disorder prognosis and treatment
Join our community and interact with other parents and families dealing with CDD
As I mentioned earlier you need to consider your own health and the family environment in deciding what help you really need. Do not fool yourself into thinking that as a mother of a 145-pound son you will always be able to lift him and provide motor function for him.
It is unfortunate that, unlike some of the other forms of Autism, not a lot of progress has been made in childhood disintegrative disorder treatment in the recent years. We can be thankful that this is a very rare disorder. Time is on our side with the rarity of the disease and the progress in research.
Join the discussion 2 Comments
I have an autistic son who is now 64. He started the change in behavior between 2 1/2 and three. Thru legislative implementation, he has been medically supervised in various facilities. He has reached different plateaus, and now the home urges me to find another group home placement. He is becoming more verbal, and able to function with various abilities such as verbally describing his rxn to meds, ability to describe pain and a desire his interest to read–a skill that he had at age 3. I would like to know where I can find help. He is housed in Minnesota where I bought an apartment so he would not have to deal with change when he visited me. I have moved to Cocoa Beach, Fl and wish to get information
on autistic facilities where I could apply for a change of residence for him. I would like to share my experience with you. It has been a long hard struggle for me to find social activities for him and get a support group. Can u advise me where to go for help?
I am working on a novel, and one of my characters has Childhood Disentegrative Disorder. While I used to teach a child with this disorder (at the elementary level), I was hoping I may get some information from parents to use as a baseline for my character.
When did you first see a loss of skills in your child? Which skill/s began going away first? How did it affect your child emotionally? How did it affect you, and still affect you, emotionally? Anecdotal stories of what you witnessed? Etc.
I know this may not be something one wants to talk about, but if you are willing I would love to have a more in-depth knowledge from a parent/family perspective of what you went/go through.