Rare Types of Autism
Many people are familiar with the most common types of autism – Asperger’s Syndrome, an autistic disorder which is a high functioning autism (also known as Kanner’s syndrome), and pervasive developmental disorder not otherwise specified – though not as many are familiar with the rare types of autism. These include Rett’s syndrome and childhood disintegrative disorder.
Though all five are subtypes of autistic spectrum disorder, the latter two are not commonly spoken about or diagnosed.
How rare are they, and how can you tell whether or not your child is affected with one of them?
Rett Syndrome
Rett syndrome is unique in the sense that it almost exclusively affects girls. Rett syndrome symptoms are characterized by normal early growth and development, followed by a gradual slowing of development. Those affected with this neurological disorder begin to lose the use of their hands, have slow brain development, and have problems with seizures.
Even though children with this disorder initially develop properly, there are some early signs of autism to look out for. Even in infants, parents can begin to notice a loss in muscle tone, jerky limb movements, or difficulty feeding. The child may also have problems crawling and may not make eye contact with others.
As the disorder continues to develop, these children commonly lose the ability to speak – even if they have already begun speaking. Once they lose the functionality of their hands, they tend to have jerky hand movements including wringing of the hands. Further progression of Rett syndrome leads to apraxia, which is the inability to perform motor functions.
Rett Syndrome Symptoms and their Stages.
- Stage I – Early Onset: Beginning between 6 and 18 months of age, a subtle slowing of development may begin to be noticeable. The child may have a decreased interest in toys, and may not learn to crawl or sit up properly as fast as other children. This stage typically lasts for a couple of months, though may last longer.
- Stage II – Rapid Destructive: Commonly begins between the ages of 1 and 4, and lasts for a couple of weeks to a couple of months. This is the stage where the child loses functional hand movements and speech, and begins to clap, tap, or wring their hands. They may randomly grasp and release their hands, or repeatedly touch their mouth. Slowed head growth becomes more noticeable, and they may show common signs of autism such as a loss of interest in social interactions.
- Stage III – The Plateau: Begins between the ages of 2 and 10 and can last for years. Apraxia becomes apparent, as do seizures and difficulty with motor skills. Young girls with Rett disorder in this stage may begin to show improvement in their behavior, and show an increased interest in their surroundings or appear to be more alert. Some people affected with this disorder can remain in this stage for the majority of their lives.
- Stage IV – Late Motor Deterioration Stage: This stage can last for decades, and includes scoliosis, muscle weakness, spasticity, reduced mobility, abnormal limb postures, and the inability to walk. Even those who still had the ability to walk in stage III may lose all ability to walk in this stage.
Most cases of Rett syndrome are caused by a gene mutation. It is estimated that this disorder affects 1 in every 12,000 females, and less than 1% of cases are inherited.
Though there is no autism test that directly tells professionals whether or not someone is affected by Rett syndrome, there are a set of guidelines that people use to determine the diagnosis. These guidelines are broken up into 3 subtypes:
- main
- supportive
- exclusion.
The main symptoms help determine whether or not the patient has Rett syndrome, supportive symptoms may help with a diagnosis, though don’t directly point to the disorder, and exclusion symptoms are those that rule out the diagnosis.
Unfortunately, treating autism of this type is difficult. Anti-convulsant medications may be prescribed to help control seizures, while other treatments are available to help manage the most prominent symptoms. Physical therapy can help with mobility, while occupational therapy may help these girls be able to take care of themselves.
Childhood Disintegrative Disorder
Sometimes referred to as Heller’s syndrome, childhood disintegrative disorder is a rare type of autism that is characterized by regression in development. These children develop normally until approximately the age of 3 and then begin to show symptoms of a dramatic loss of skills. Previously acquired skills in certain areas begin to disappear. Unfortunately, once these skills are gone they may never improve. Common areas of skills lost are:
- Social skills: Children exhibit difficulty relating to and interacting with others
- Motor skills: They begin to lose the ability to climb, walk, grasp objects, or perform other simple movements
- Bladder control: Children who were previously toilet trained may begin to commonly have accidents
- Language: They may forget words they have already learned or show a severe decline in the ability to hold a conversation
- Play: They lose interest in games involving the imagination, as well as other toys and games they previously loved
This disorder is so rare that the cause is currently unknown – though professionals are speculating that it is linked to problems in the brain and nervous system. It is thought to only occur in 1 out of every 50,000 children. In order to be diagnosed with childhood disintegrative disorder, the child must have had normal development for at least three years and then show a drastic loss in acquired skills. Although people affected with this disorder will need life-long treatment, behavior therapy is available that may help re-learn or minimize the loss of certain skills. This treatment needs to be consistent in order to see results.
Although these 2 subtypes of autism are very rare, they do occur. Treatments are available, though do not alleviate the symptoms as much as make them more manageable. The symptoms of these two rare types of autism are more pronounced than the more common subtypes, so the ability to diagnose children at an early age may allow for earlier treatment that can help them live the most manageable lives they possibly can.
For information on other types of Autism, visit here
If you would like some information on natural medication to help your child with Rett syndrome, click here!
From our hearts to yours,
