A 2013 study in the UK found that individuals with learning disabilities are at higher risk of premature death than those in the general population. For the purposes of the study, a death was considered premature if “without a specific event that formed part of the ‘pathway’ that led to death, it was probable that the person would have continued to live for at least one more year.” Lead author Dr. Pauline Heslop said,
“The unacceptable situation remains that for every one person general population who dies from a cause of death amenable to good healthcare, three people with learning disabilities will do so.”
You can read the full study here http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
This risk may be even higher for those who are diagnosed with autism, especially when communication is an issue. Individuals who are nonverbal may not be able to explain their symptoms to doctors or caregivers, and often behaviors such as head-banging or slapping may be written off as autistic self-stimulatory behaviors. Parents and regular caregivers who know an individual well may be able to tell when something is off, but for those who are living in residential facilities with high employee turnover, it is all too easy to miss the signs.
The tendency for some individuals with autism to suffer from hyper or hypo-sensitivity further complicates the problem. Those who are hypersensitive may react strongly to a light touch or ordinary sounds, and their reactions to pain may be written off as another symptom of autism. Individuals who are hyposensitive are under-reactive to pain, and they may not notice symptoms until the disease has progressed into a serious disorder. A relatively small problem, such as a toothache, can lead to significantly larger medical issues if left untreated. Early detection is also a significant factor in successfully treating diseases like cancer.
Few medical professionals have the training or experience to understand how nonverbal patients with autism may be communicating, and they often miss symptoms that could have led to a diagnosis and proper treatment. Jim Blair is a consultant learning disability nurse in the United Kingdom who campaigns for better treatment of adults and children with learning disabilities in hospitals. Staff members who are trained to understand the unique communication style of patients with disabilities can help doctors determine the meaning of certain behaviors. Currently less than half of the hospitals in the UK have learning disability nurse specialists on staff.
The National Autistic Society has encouraged the use of health “passports” for individuals with disabilities. These documents contain vital personal history, medical information, sensory idiosyncrasies, and advice on how the patient might behave when stressed or in pain. Many health professionals have found these passports to be helpful, but unfortunately, there are many who refuse to take the time to read them.
Other resources include the Books Beyond Words series, which explains common health problems in pictures. Visual pain scales using faces instead of numbers can also be helpful to patients with autism.
Editor Note: Over the past year we have reported on many (but far from all) unnecessary deaths among individuals with autism. Comments are open for your views.