The childhood disintegrative disorder it is a very rare syndrome that affects some young children. It is characterized by the late appearance of delays in linguistic, social and motor development; on some occasions, regresses may even occur in these areas after a period of time of normal development.
Childhood disintegrative disorder was first described by educator Theodor Heller in 1908. Initially, this problem was known as "infantile dementia," but later the name was changed. Despite having been known for more than a century, today the causes that cause this severe problem are still unknown..
This disorder has some similarities to autism, with the difference that linguistic, social and motor difficulties do not appear early in the child's life; on the contrary, they arise after a period of normal development that can last up to 3 years. For this reason, today this syndrome is also known as "regressive autism".
Sometimes the loss of apparently already acquired skills is so severe that the child himself realizes that something is happening to him. The effects of this disorder on the life of the individual and their family members are usually very serious. In this article we will tell you all the information available on the subject.
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Childhood disintegrative disorder is extremely rare, affecting approximately 2 in 100,000 children. This makes it even less common than autism, with which it appears to be related to some extent..
However, children affected by this disorder suffer a series of symptoms that make their life very complicated. According to the DSM - IV, the diagnostic manual used by psychologists and psychiatrists, the syndrome only begins to manifest itself after 2 or 3 years of adequate development on the part of the individual..
This means that, for reasons still unknown, an apparently healthy child begins to lose some of the skills that he had already acquired..
The syndrome can affect all areas of development or just a few. At ten years of age, those affected usually show a behavior similar to that of a person with severe autism.
Next we will see what are the most common symptoms.
One of the skills most affected by childhood disintegrative disorder is speech. Children who had previously begun to communicate verbally and understood what was being said to them, suddenly begin to lose this ability and usually lose all ability in this regard..
For example, a child may already be able to form short three- or four-word sentences before the onset of the disease; but when it arises, he progressively begins to lose this ability. At first he may only be able to use single words, and later he may not be able to produce language at all.
The same goes for your ability to understand what other people are saying to you. In most cases, when the disease is advanced, children are unable to understand spoken language.
Another of the areas most affected by childhood disintegrative disorder is social behavior. Children who suffer from it begin to act in non-adaptive ways with those around them; do not understand the rules of their environment, and are unable to establish normal relationships with other people.
Thus, for example, these children suddenly stop responding to physical contact or paying attention to their classmates, family members or teachers even if they already did before. They also tend to have frequent tantrums, and are unable to develop any kind of empathy for others.
Loss of ability to control one's sphincters is another of the most common symptoms of this disorder. Children who had already developed this ability begin to lose it little by little; and those who had not managed to do so remain stagnant and show no improvement in this regard.
The body's ability to move and control is also affected by childhood disintegrative disorder. Depending on the severity of the disease, a large number of skills can be lost in this area: from running and balancing to simply walking or standing for a long time.
On the other hand, as in other autism spectrum disorders, stereotyped and repeated behaviors also tend to appear. For example, the child may begin to swing on himself rhythmically.
Playing is one of the behaviors most practiced by children, and also one of the most important in their cognitive, emotional and motor development. Thanks to play, the little ones explore the world around them and begin to internalize the norms of the society in which they live.
Children with childhood disintegrative disorder, on the other hand, are unable to use this activity as a means of learning. For example, they will not understand symbolic games, nor will they be able to interact with their peers in a normal way even when they could before..
Unfortunately, the causes of childhood disintegrative disorder are still unknown today. Research suggests that it may appear due to a combination of genetic susceptibility (such as a poor autoimmune system) and certain prenatal or environmental stressors..
Formerly it was believed that all forms of autism were caused by an incorrect interaction of the parents with the child during its development.
This idea caused a lot of unnecessary suffering for families with members with such disorders. However, today we know that this is not an important factor.
On the contrary, a large number of risk factors have been detected that can lead to the development of childhood disintegrative disorder as long as there is a basic genetic predisposition. For example, certain viral diseases such as toxoplasmosis or rubella could play an important role in this regard..
It has also been discovered that, as in other types of autism, children with this disorder often have problems in the formation of the myelin layers that line the brain neurons. This may be the cause of the breakdown of the white matter in the brain, which in turn would cause most of the symptoms..
On the other hand, some allergies, lack of vitamins such as D or B12, and certain complications at the time of delivery could also contribute to a child developing this disorder. However, more research is still needed to fully understand the problem..
The lives of children with childhood disintegrative disorder and their families are often very complicated. Unfortunately, even using all the techniques and procedures available to alleviate the consequences of the problem, less than 20% of those affected manage to lead a relatively normal life.
In contrast, most children with disintegrative disorder never regain lost social, cognitive, and motor skills; and also, they do not develop new ones.
Typically, they are unable to speak complex sentences (or even utter language of any kind). They are also unable to form adequate social relationships with other people, or fend for themselves: almost everyone affected by this syndrome needs constant attention from another person..
These difficulties continue even into the adult life of individuals. Most of them end up living with their relatives or, if they cannot take care of them, they are admitted to specialized centers where there are professionals prepared to take care of them..
However, a small percentage of children affected by childhood disintegrative disorder manage to regain part of their lost abilities and progress in their cognitive, motor and social development.
One of the most important factors in this regard seems to be the early detection of the syndrome and the immediate application of a treatment.
Families are primarily involved in helping children with this disorder. Because they require constant attention, parents, siblings, and others close to them are often under a lot of stress, as well as feeling misunderstood and exhausted by the process..
Because of this, in most large cities there are specialized support groups for parents of children with autism spectrum disorders, including the degenerative childhood disorder. These groups can be a great help both in the improvement of the child and in maintaining the well-being of their family members..
There is no treatment that is effective in all cases of childhood disintegrative disorder. However, there are certain methods and techniques that can help children regain some of their lost skills and develop some independence..
As in the more conventional cases of autism, the main approach to treating those affected by this disorder is the behavioral one. The objective is to re-teach children the skills they have lost and help them generate new ones, based on behaviorism..
Thus, through reinforcements and punishments, the behaviors that the child wants to achieve are rewarded and trying to eliminate the problems. This process, however, is long and complex; and family members must maintain treatment at all hours, including at home.
Therefore, part of behavioral therapy consists of educating parents and others close to them in the procedures they must follow so that the child has the maximum chance of recovery..
Today, no medication is yet known that is capable of alleviating or eliminating all the symptoms of childhood disintegrative disorder..
However, certain pharmacological treatments seem to be useful to prevent to some extent the development of this disease or to end some of its more serious problems.
Recently, steroid treatments have been started to reduce how quickly the symptoms of this disorder appear, as well as to try to reduce their severity. However, more studies are still needed in this regard to be able to affirm if it is a really effective method..
In some cases, it is also possible to use antipsychotics to reduce some problem behaviors, such as repetitive behaviors or attacks on other people.
In most cases, children who develop this disorder and their families will have to learn to live with the symptoms for a long time. However, this is not to say that nothing can be done to help those affected lead better lives..
After all, people with autism spectrum disorders are still human, albeit with different needs, abilities, and interests. Therefore, understanding what types of activities are beneficial to carry out with them can be key to improving the quality of life within the family.
Here are some ideas for activities you can do with a child with childhood disintegrative disorder..
Help him create a safe space at home. Individuals with autism spectrum disorders are usually overwhelmed with everything that happens around them, and need to have some alone time from time to time.
This space can be something as simple as a corner of the home that is just for him, but you can make it as elaborate as you want.
For some reason, children with autism spectrum disorders like to explore their surroundings and are often curious about their surroundings.
To encourage this, you can play discovery games with them: for example, fill a box with different materials and encourage them to touch them without looking at them to discover what they are..
A child with childhood disintegrative disorder probably does not play like the others in a park or on the street; But that doesn't mean you can't enjoy your time away. Encourage him to run on the lawn, explore his surroundings safely, or simply enjoy nature.
Of course, there are many more activities that you can do with a child who develops this disorder. Occupational therapy is a discipline that handles precisely this; and a good psychologist or psychiatrist can also guide you in this regard.
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