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From Inside the Puzzle: Raising a Child with Autism Blog

Being Here: Responding to a Tragedy

Published March 20, 2012 10:56 AM by Devon Alley

I've been trying to find the right way to address a tragedy that happened earlier this month, when a mother killed her 22-year-old autistic son, and then herself. But I've been at a loss for words. How do you even begin to talk about something so horrific and so terrible? I feel completely ill-equipped to even begin a rational discussion about this complicated and heartbreaking story.

What I can do, however, is let you know what others are saying about this -- others who have been able to eloquently and intelligently discuss the issues surrounding the tragedy, and issues that relate directly to the tragedy.

I first found out about the news from Shannon Des Roches Rosa's blog. She described the event, the factors that may have influenced the tragedy, and immediately put forth the challenge, "We need to find better options for young adults with autism and developmental disabilities as they transition out of school and into... where? We need structure, options, policy... and to ensure that all our kids have options when their yellow school buses stop showing up." The lack of ongoing services for adult autistics may have been a part of the catalyst of this horrible tragedy. Even excepting that, the lack of support for autistics as they transition into adulthood is a widespread problem. Charlotte Moore discusses how she has had to struggle with cobbling together a piecemeal program for her 19-year-old son, Sam, on this essay at The Thinking Person's Guide to Autism. She states:

Autistic school-leavers don't just melt away. An autistic child becomes an autistic adult. Lack of educational provision after the school years puts enormous strain on families, and on social services, who face the daunting task of shoehorning people with very complex needs into inadequate and inappropriate placements.

This becomes a stress for the entire family unit -- for the parents, obviously, but also for the autistic adults, as well. The transition into adulthood is often difficult even for neurotypical teenagers. It's vital that autistics transitioning into adulthood get the support and services they need so that this transition can be as successful and as least traumatic as possible.

Because, the other side of this tragedy -- and perhaps a side that is not publicized nearly as much -- is that a beloved member of the autistic community is no longer with us. The other side of this tragedy is that this is one more page in a terrible history of disabled people who have been murdered by family members. On March 16th, several people held a vigil to remember not only George Hodgins, but also all disabled people who have lost their lives under similar circumstances, and Liz Ditz provides a thorough recap of that event on her blog, as well.  At the vigil, Zoe Gross explained why the autistic community is outraged:

The story of George Hodgin's death is being discussed and presented as a story of a mother who snapped, and the story of other parents who have felt the same way. It's being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.

Because the story is being told this way, the autistic community feels as if the world doesn't acknowledge the value of their lives as disabled people. (And who can blame them, especially when the recently-formed Autism Advisory Task Force for the Department of Managed Healthcare in California doesn't even include a single autistic person, as recently pointed out by Sarah Pripas of autisticadvocacy.org.) The autistic community, and the Autistic Self Advocacy Network specifically, is asking for the world to take action, to help organize a nation-wide day of mourning for disabled people killed by family members and caregivers on March 30th. Zoe Gross explains, "Through your help, we hope to amplify our message: that disabled people deserve to live fulfilling lives free of violence." I would like to invite you to participate with me in this event. Find a local vigil, or help organize one yourself. You can find out more at the ASAN's campaign website.

So, besides holding a vigil -- remembering, mourning, and attempting to hold the entire situation gently with mindfulness and empathy -- what else can I do? Perhaps Lydia Brown has some of the best advice in her open letter to the parents of autistic children:

It is parents, albeit a very small minority of parents, who visit these atrocities against their children, against children who needed their love and support. Thus, it is you, parents, who bear the great responsibility to make your voices heard throughout your communities and networks that you love your children as they are, that you want the best for your children even if it means making enormous sacrifices, that you want to be part of the collective community in uplifting and empowering the next generation of Autistic children so that one day no parent will feel compelled or driven to murder and that no Autistic child will grow up thinking of him or herself as defective or broken or a burden.

That is a call to action I will gladly take on, and I will do so again and again. Lydia, I promise you, I will not give up, I will seek support, and I will continue to seek the support of Autistic adults. I will continue to listen to you. Because one day, and one day soon, my daughter is going to be one of you, and I want to see her succeed and thrive as she transitions into adulthood, I want to uplift and empower her, and, most importantly, I want her to know that she is loved and accepted and cherished exactly as she is, because of who she is -- a beautiful, amazing, autistic girl.

I will be here, Lydia, for my daughter, and for you. I am listening.

posted by Devon Alley

2 comments

Katherine -- I'm spoiled by Facebook & Google Plus, because I want to "Like" or "+1" your comment. :-) Thank you for listening, and for being here, too. In the wake of such a tragedy, it is good to know that people can still come together in order to try and make things better.

Devon Alley March 22, 2012 9:21 AM

Devon, thank you so much for sharing all of this information, as well as your feelings.  It is so easy to feel that "all is being taking care of" when, in fact, the struggles of adults with autism, as well as all of the other disabilities, are struggling to get by in a world that speaks about them in loud whispers and provides just enough help to make it look good.  Please let me know what I can do to help.  I am listening too.

Katherine Collmer, Pediatrics - OT, Handwriting With Katherine March 22, 2012 6:35 AM
Sandwich MA

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