Autism charity calls for better medical care for people “left in pain or to die prematurely”
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London, UK – To mark World Autism Awareness Day, our charity Treating Autism has launched a new campaign, “In Pain, Can’t Explain”, to draw attention to shocking evidence that many children and adults with autism are suffering as a result of neglect of their medical needs. Treating Autism is calling for the establishment of a specialist UK diagnostic treatment centre for medical conditions associated with autism.
As a part of the campaign, all 650 MPs in Parliament have been sent an a letter detailing the obstacles facing people with autism in accessing appropriate health care. Treating Autism is also running a petition asking for a closing hospital in Lancashire to be converted into a centre for autism-related medical conditions.
A spokesperson for Treating Autism said “People with autism, especially those who are non-verbal, may not be able to explain when they are ill or in pain. Sometimes, in an attempt at pain displacement, they might become aggressive or start self-harming. Unfortunately, such behaviours are often considered to be a part of autism, and are either left untreated or treated inappropriately.
“Some medical conditions, such as epilepsy, migraines and acid reflux, are more common among people with autism than the general population. We know of cases where children have become violent due to pain from acid reflux, but this was assumed to be an ‘autism behaviour’ and no investigations were carried out. Some children were put on antipsychotic medication, in an attempt to calm them down, but this is a completely inappropriate treatment for acid reflux, and one which could cause a number of detrimental side effects.
“What is more, some of the medical conditions associated with autism can be life-shortening. For example, epilepsy, a leading cause of early death, can affect up to 40% of individuals with autism, and many more may be suffering from undiagnosed, subclinical seizure activity. Shockingly, the average life expectancy for a person with severe autism is only 39.5 years.
“Clearly it is totally unacceptable for any children and adults to be left in pain, or to die prematurely, from treatable medical conditions. Our charity considers that the best way of addressing this issue is to set up a specialist diagnostic and treatment facility. People with autism must not be made to wait any longer for appropriate medical treatment.”
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Notes to editors
Treating Autism is a national charity, representing over 1,000 families affected by autism, and run entirely by parents of children with autism. It is the only UK charity which focuses primarily on health issues associated with autism.
Hirvikoski T, Mittendorfer-Rutz E, Boman M, et al. (2016) Premature mortality in autism spectrum disorder. Br J Psychiatry. Mar;208(3):232-8. bjp.rcpsych.org/content/208/3/232.
Schendel DE, Overgaard M, Christensen J, et al. (2016) Association of Psychiatric and Neurologic Comorbidity With Mortality Among Persons With Autism Spectrum Disorder in a Danish Population. JAMA Pediatr. Mar;170(3):243-50. jamanetwork.com/journals/jamapediatrics/fullarticle/2479467.