Alex Spourdalakis: When media intervention goes wrong in Autism coverage

How far is too far? Do parents of autistic children need more support?

CC BY-SA by laogooli

A petition has been started urging producers to take down the video featuring interviews with Dorothy Spourdalakis.

Autism Daily Newscast reported on the video on August 30, re-telling the story of how Dorothy was an innocent victim of a system who failed her, and her son.

Alex, 14, died in June, having been force fed sleeping pills and stabbed through the heart 4 times. Dorothy and Alex’s godmother Jolanta Agata Skordzka, then attempted auicide themselves. Dorothy being unsuccessful. Her suicide note justifying her actions. She wrote :

“Alex has been forgotten. I don’t have a safety net so I could help him recover.”

The history is that Alex was unwell and in pain. His frustration, as with a vast majority of non-verbal autistics, was exhibited through his behaviour. He was restrained to a bed with belts for tests and left with a towel covering his genitals.
The Autism Media channel who is run by and co-owned by disgraced doctor Andrew Wakefield stepped in to intervene.

As contributor Emma Willingham writes in Forbes on September 5:

“Instead of ensuring that Alex received the support and medical help he needed, some autism-related sites, while he was alive, disseminated pictures and video of the boy that showed him strapped to beds, naked, with only a towel covering his genitals, and other degrading images, making claims about how the medical establishment was treating him that are, at best, unconfirmed. Regardless, making these images public was a violation of that child’s humanity and dignity as a prelude to the ultimate violation of his being murdered.”

She goes on to urge readers to look at the facts of this case, stating:

“It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the ‘monster’.

No other condition draws this kind of judgment or leads people to blame the condition, the murdered, and everyone except the murderer for killing her own child [ETA: although the murder of people with disabilities in general, especially people requiring extensive care, does frequently draw that kind of sympathy; also, a commenter has brought cerebral palsy to my attention as another example]. If Alex had had Down syndrome, cancer, schizophrenia, ADHD, or a traumatic brain injury, no one would be giving his mother a pity pass for having brutally taken his life, overwhelmed by his needs. Overdosed on sleeping pills but not dead, he was stabbed in the chest four times and then his wrist sliced with such force that it was almost detached from his body. Lest anyone doubt that in some circles he remains a secondary consideration, simply read this comment and others in the same thread in which the fact that he was brutally murdered doesn’t even warrant a mention.”

Another American mother, Kelli Stapelton, 54, is under arraignment in Michigan after attempting to kill herself and her 14 year old daughter. As reported yesterday in Autism Daily Newscast, Ms Stapelton  had run a blog called The Status Woe, documenting her own experience with Autism and health care. A Facebook page titled Support and Prayers For Kelli and Issy and the Stapleton Family was quickly established and writes:

“Sometimes we are given more than we can handle. Walk a mile in our shoes and save your judgment.”

Autism Daily Newscast would like to hear your opinions on the story, please comment below:

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Shân Ellis About Shân Ellis

Shân Ellis, is a qualified journalist with five years experience of writing features, blogging and working on a regional newspaper. Prior to working as a journalist, she was a ghost writer for top publishers and was closely involved in the editing and development of book series. Shân has a degree in the sciences, and 5 A levels. She lives in the UK and is the mother of an autistic child.