The Dark Side of Autism

[Re-posted from original blog post dated May 22, 2013]

I agree with the writer of the blog below — autism has a dark side, and we need to discuss it and confront it, or we will not get the support our children need to not only live successful lives but in some cases live, period. In fact, we will lose more of them to senseless deaths, institutionalization and wasted existences — and that is unacceptable.

In addition to the resource listed below, the NAA’s Big Red Safety Box, you can donate to ACT Today!’s SOS Fund to provide immediate help to families who have children with autism in life threatening situations:

Nancy Alspaugh-Jackson, Executive Director, ACT Today!


Second Child with Autism Wanders, Drowns in One Week

By Kim Stagliano

I awoke to an email on Saturday, the subject line read, “My son is missing.” I paused for a moment. You know how email can be – lots of funky subjects that lead to phishing emails of all sorts. But I opened and read the email. And then I Googled the name of the child and the details that the sender had provided. My God, her son was missing.

Owen Black had wandered away from his holiday condo in Perdido Beach, Alabama and within two minutes, was out of his mother’s sight, having slipped out the door.

I sent out a FB missive that hundreds shared and Tweeted for anyone in the area to try to help. Joe Scarborough from MSNBC, a Pensacoloa native, retweeted the call for help. Hundreds turned out to search. To no avail. Owen, like Mikaela Lynch last week, wandered and drowned.

THIS is the reality of autism and all the blue buildings and “It’s just a difference” t-shirts and the “We don’t need a cure – just accept them” in the world doesn’t mean jack diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN. I woke up thinking of Owen. And now the news we all dreaded. AGAIN.

I Tweeted the sad news about Owen – and yes, I blamed his autism. Someone Tweeted back, “It wasn’t the autism you moron” or something to that effect.  And then she blamed “negligent parents.” Really? Must have been one of the “Autism is a difference not a disability” crowd. Or perhaps a cruel skeptic – as there wasn’t a scintilla of emotion for the child, for Owen.

I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger’s – autism affects day to day life in myriad ways. And yes, some are deadly. And as far as “negligent parents” go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away – alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of  a 22 story property on 2200 acres while I was in the bathroom.  We are not negligent – we are human. I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I’d hear it before they could leave my room. Just to get a 30 minute nap.

I’m all for accepting my girls – I’m all for people being aware of autism. But they are hardly the priority when the rate is 1 in 50 school children. We HAVE acceptance in every part of our life for the most part – and you’d have to be deaf, dumb and blind not to be aware of the word autism.

It’s the glossed over version that bothers me so much, as if the dark side of autism is too shameful to share and it’s incredibly cruel to the people with autism who suffer, and their families. “Autism? Isn’t that smart quirky kids?” It’s like saying, “Cancer? Isn’t that a slightly darkened mole?” Well yes for some it is – but for others – probably the vast majority? It’s not a that simple — or survivable.

Please support the National Autism Association Big Red Safety Box program. $35 buys a safety kit for a family. And if you are in need of a box, by all means contact NAA at the link above. To the families of Mikaela and Owen we can only express our sorrow.

Kim Stagliano is Managing Editor for Age of Autism.

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