Heller’s Syndrome Often Confused with Autism
Heller’s Syndrome (also known as (CDD) Childhood Disintegrative Disorder and disintegrative psychosis) is an extremely rare syndrome. Incidence is only one per 50,000 children, about sixty times less frequent than autism. However, research often questions the prevalence due to the similarity between Heller’s Syndrome and autism causing under-diagnosis / misdiagnosis.
The characteristics and clinical presentation is very similar to autism…so similar that Heller’s syndrome has been seen by some as a form of late-onset autism with it’s own distinct etiology. Other researchers have considered the condition to be a childhood dementia because they believe that the brain deposition of amyloid is the cause of the condition. However, the pathophysiology of that theory has yet to be proven.
The syndrome was first identified by Theodore Heller, an Austrian educator, in 1908, 35 years before Leo Kanner first described autism.
Unlike autism, those with Heller’s Syndrome have normal development for the first 3-4 years of life. There is a sudden, unforeseen and marked deterioration of physical, cognitive, emotional, and behavioral ability. This loss may be gradual or grossly immediate. The affective behavior is specifically similar to the social interaction and “autistic -like” restrictive and repetitive communication and language impairments of children with autism. Autistic children never develop that normal skill set to lose it.
The aftermath of Heller’s syndrome can take several different paths. Most children have a slight recovery period, where some skills such as: continence, language, and social interaction skills make some recovery. Other cases involve the child’s loss of skill ending, but there is no improvement or re-learning of lost skills. A few cases involve the continual progression of loss of skill, where the child has a high probability of death.
There is not a single cautive factor known. Recent research focuses on a combination of genetic susceptibility and prenatal / environmental stress causing greater brain deposition of amyloid and disrupting synaptic transmission.
Read more about Heller’s Syndrome:
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drelayaraja | Jun 11, 2010 | Reply
Very informative share.
Anuradha Ramkumar | Jun 11, 2010 | Reply
I haven’t heard of Heller’s syndrome at all. It was very informative and I’m happy to learn something new and informative today.
lillyrose | Jun 11, 2010 | Reply
Very well researched article. This is a completely new syndrome to me and a very disturbing one. Our brains are so complex. Thanks for this information. (stumbled) Yes I finally got the hang of it. Thanks for all your help by the way xxx
Phill Senters | Jun 11, 2010 | Reply
A very informative article Ashley. I knew of Heller’s Syndrome, but didn’t realize it was quite that rare.
samsons1 | Jun 11, 2010 | Reply
WOW! Very well written and informative, familar with autism but not Hellers…
Phoenix Montoya | Jun 12, 2010 | Reply
Good to know. You made some real clarifications here. Good job and liked it.
Melody SJAL | Jun 12, 2010 | Reply
Such an informative piece, thanks.
Netty net | Jun 12, 2010 | Reply
I didn’t know that there was Helen syndrome.
patofgold23 | Jun 12, 2010 | Reply
this is the first time i heard of heller’s syndrome…. thnks for the information
Chris Stonecipher | Jun 13, 2010 | Reply
Hi Jo,
I haven’t heard of Heller’s Syndrome before. However, there are causes of autism are discovered after a few years of typical development. Excellent work!
amanda casey | Jun 16, 2010 | Reply
I wasn’t aware of Heller’s syndrome. VERYwell written article.
Henrik W. Gade | Jul 9, 2011 | Reply
I am the father of Lukas, now 17 years old. He was adopted from Poland in 2000. He was already handicapped (ADHD and Tourette’s syndrome), but was a happy child. He knew over 60 songs by heart and loved to play with his toys and. I often took Lukas in our Christiania Bike for long travels.
Lukas was hit by Heller’s Syndrome a summerday in 2005. He was playing with a ball and suddenly stiffened for more than 5 minutes. When he “woke up”, he had stopped playing. The playing never came back, In 2006, he lost his active language. He still has an passive language and understand every we tell him. Lukas lives in an instituion near Copenhagen in Denmark.
Today is Lukas birthday.
Lukas father