Associated Morbidity and Mortality
Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,89–91 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.
The above information from the American Academy of Pediatrics, Management of Children With Autism Spectrum Disorders, autism policy statement 2007, reaffirmed 2010, makes it clear that the challenges facing those with severe autism and their families includes substantially higher costs and increased mortality. Some very, very high functioning autistic persons like Ari Ne'eman, John Elder Robison and others make careers lecturing government, media, professionals, even institutions of higher learning, about autism and dictating how society should see and deal with all autistic persons, including the severely autistic with whom they have so very, very little in common. The result is a lack of attention to, and provision of services to, meet the short and long term needs of those who suffer from, severe autism disorders.
For many high functioning autism self advocates, having received an Autism Spectrum Disorder diagnosis, they no longer consider autism to be a disorder. They are reinforced in their irrational denial by mainstream media who love to publish autism feel good stories. References to Einstein, Van Gogh and every historical talent and genius you can think of routinely include mentions of suspicions that they were autsitic although they lived before autism was recognized to exist. Charities seeking to maintain their charitable tax status and otherwise ingratiate themselves to governments and donors like to emphasize the "positive" and in some cases actually attack parents who speak honestly about their own children's severe autism disorders. In all these cases those like my son who live on the severe end of the autism spectrum of disorders are invisible. For the invisible severely autistic the only times they are even mentioned in the media is when tragedy strikes, when a child wanders from home to nearby swimming pools, lakes or busy roadways. Otherwise, they might as well be literally invisible. Their needs will not be addressed. Even mention of their severity, even the concept of severity will remain verboten.
One necessary first step is to reverse the serious DSM5 mistake of combining, with no evidence basis, the various pervasive developmental disorders into 1 Autism Spectrum Disorder so heterogeneous in nature it makes the new ASD a useful tool for continuing the historical trend of "autism" studies of high functioning autistic subjects that at the same time exclude the severely autistic. The new ASD also gives legitimacy to the very, very high functioning career autistics who, with the mainstream media and money seeking charities, suppress knowledge of severe autism realities and with that suppression contribute to societal oppression, by ignorance, of the severely autistic.
I will speak out and condemn, as long as I am alive, the suppression of the truth about the realities faced by those with severe autism disorders and their families. It may not make a difference in the upside down, distorted world of autism "awareness" but I will try anyway. I owe it to my severely autistic son to do so.