Last week, Autistica, a UK “… charity which both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions…” released a report that received worldwide attention.
Personal tragedies, public crisis
The urgent need for a national response to early death in autism.
Based on a recent Swedish study, these points were highlighted:
• Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death.
• Those without a learning disability are 9 times more likely to die from suicide.
• Autistic people die on average 18 years earlier than the general population.
• For those with autism and learning disabilities, death occurs more than 30 years before their time.
As with any new alarming finding, the media reacted. One report began, “It’s only one study, but the results are disturbing.” That was one of the least sensational interpretations.
Comparative Mortality of Persons with Autism in California, published in 1998, demonstrated that, “Persons with autism are subject to increased mortality risk…”
Research “… to determine which causes of death are more frequent in persons with autism, and by how much, compared with the general population…” was further documented over 15 years ago. The doctors concluded, “… excess mortality was especially marked for persons with severe mental retardation, but life expectancy is reduced even for persons who are fully ambulatory and who have only mild mental retardation.”
Five years ago, another set of authors verified those statistics and recommended, “Various national health care and state developmental disability agency initiatives to reduce risk of mortality are described.”
Likewise, the increased mortality associated with epilepsy (convulsions of various and often uncertain origins) has been previously demonstrated.
Comments following the story as reported in Science magazine followed various lines of thinking. There was anger directed at doctors, frustration with government failures, exasperation over how long this information has taken to surface, and advice about treatment.
Individuals ‘on the Spectrum’ complained of depression and outrage was expressed by many. An AutismSpeaks vice president explained that, “we need to use caution when interpreting these data…”
What is the life span in autism? The most precise answer ought to take into account what kind of autism (genetic, immunologic, metabolic, e.g.), and whether a patient continues to experience co-morbid signs and symptoms. Over-treatment with potent pharmaceutical preparations may contribute to the cause of the increased mortality. Or, caught early with appropriate intervention, the diagnosis can be lost, so ’cause of death’ should parallel the neuro-typical.
It’s important to get the word out about the ASD epidemic. The media attention to this particular literature, however, is somehow more urgent because of the loss of life; not family and societal costs, nor the numerous qualities that are delayed or absent in the presence of signs and symptoms of autism.
Additionally, certain basic issues, such as improving the general health of those most affected with ASD, proper housing and nutrition shouldn’t require lots of resources to study and implement. Understanding epilepsy, seizure control and psychiatric care will, obviously, take more time.
Autistica appears to be doing valuable work to address this modern epidemic. The recommendations that were made at the conclusion of the report may actually get some traction, especially with the backing of Deutsche Bank.
So, to the extent that this predictable and pre-reported outcome amplifies the need for better answers, media attention to this side of the story should prove helpful.