Murder, Fear and Hope

An autistic child has been murdered.

Again.

His name was Daniel Corby.  He was 4 years old.

(The following is by no means a cohesive or complete list.)

March 2012 – mother kills George, her 22 year old autistic son.

August, 2011 – mother shot and killed her 13 year old autistic son, Ben.

July, 2011- mother strangled her two autistic children, a 2 year old daughter and 5 year old son.

May 2011 – mother kills her autistic son, Glen by strangling him with the belt from her coat.

February, 2010 – mother killed her 8 year old autistic son, Jude.

2010 – Mother kills 6-month old son, Rylan because she suspected he might have autism.

2009 – Father kills 11 year old autistic son, Jeremy.

2009 – mother withholds medication from her autistic son, Jeremy who has leukemia.  Jeremy dies as a result.

Our outrage, our pleas that these murders stop, our desire to blame, rationalize or even understand will not bring any of these children back or prevent another parent from murdering their child.  What can make a difference is a change in the way we as a society view autism and autistic people.

The word “autism” causes fear.  So little is actually understood about autism and so much of what people hear are theories, it is natural that people would find autism frightening.  We fear what we do not know or understand.  This has been true throughout history.  The ever changing “statistics,” the words used to describe autism, the vastness and mutable nature of the spectrum, how indefinable it is, all add fuel to the fear.  It doesn’t have to be this way though.  And that is where there is tremendous hope.

A year ago I regularly lay awake at night worrying about my daughter, Emma’s future.  I knew of very few adults with autism, I had read everything written by both Donna Williams and Temple Grandin, but their experiences seemed far removed from my daughter’s.  All of that changed when I began following blogs written by autistic adults.  I had an “aha” moment.  The moment of realization and understanding when what was once abstract becomes real.  A friend of mine told me of her “aha” moment during an autism conference she attended where she saw a nonverbal young man who reminded her of her son.  He had the same gestures, the same stims as her child.  She imagined this was her son in 15 years and she was filled with despair.  The following day she returned to the conference and attended a workshop on facilitated communication, led by…. none other than the young man she’d seen the day before.  Only now he was communicating his thoughts.  His words were intelligent, articulate and heartwarmingly beautiful.  She left the conference in tears realizing how she had underestimated this young man, as well as her own child.   She vowed never to do so again.

Assume competence.  Even if there is no “proof” that our neuro-typical minds can hold onto, we must assume competence.  Because to do otherwise is to fail our children.

I have written about much of this at length in other posts, so I am not going to continue now, but I strongly urge anyone who is frightened to read the blogs written by autists.  The veil of mystery may be lifted.  It was for me.  Reading the words of autists alleviated my worries.  Here were adults who were leading the way, so that those, like my daughter, Emma, might not have to. My life, so long dominated by fear is now dominated by hope.

There is a large and thriving community out there of both autists and parents of autists who are writing, blogging, commenting and reaching out to one another.  The only requirement to join this community is a desire for connection.  Because of the internet, we all have a support system if we want it.  No parent or autist need feel alone.  The autists are the ones who can and will change the current perception of what it means to be autistic.  They are writing and speaking forcefully, beautifully, with eloquence and power.  I have said this before, I will say it again:  We must listen to them.  They need to be included in any discussion, organization or conference regarding autism.  More importantly, they need to be included, period.  Some parents have said to me – but they have blogs.  They can talk.  They are articulate, while my child is non-verbal, self-injurious, cannot attend to his basic daily needs.  And my response is – Yes, that is exactly why we must listen.   Just because some of our children cannot speak or those who do may not be as articulate, doesn’t take away from the fact that these autists can and do.  If our children could speak as eloquently – how do we know what they would say?  If they could speak, wouldn’t we listen?

The following is a list of wonderful blogs that have literally changed my life:

Aspie Rhetor

Autism and Empathy

Autistic Hoya

Dude, I’m an Aspie

I’m Somewhere Else

Journeys with Autism

Juniper Hills Farms

Just Stimming

Life With Aspergers

Moonlit Lily

Quirky and Laughing

ThAutcast

The Autistic Me

The Third Glance

For parents with non-verbal autistic children:

Read any book written by the autist Tito Mukhopadhyay

Carly Fleishmann

Another youtube video of Carly

Interview with non-verbal autistic adult

In addition, for anyone who has an autistic child no matter where they fall on the spectrum, please read this interview with Henry Markram on his Intense World Theory for Autism.  It is the first time I’ve read a “theory” that validated everything I felt I saw in my daughter, Emma.

We may not be able to stop parents from murdering their children, but we can change how people view autism.

We must not succumb to fear.  Hope is all around us, we need to stop and listen.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

For my most recent Huffington Post piece, go to:  HuffPost

11 responses to “Murder, Fear and Hope

  1. I don’t know how I have not found you before, but glad I have now. I am another mother of an autist, living here in NYC, writing about my son, among other things. Thank you for writing your moving, powerful posts.

    I too have found reading the writings of adult autists to be so important in my journey of understanding my son and his world. Once I started I was surprised and saddened that almost none of my son’s many early therapists had suggested I take that path, and really shocked when I realized how few of them were, in turn, doing this same reading themselves. It seems so absolutely vital, how could they NOT want to hear autists speaking about their experiences in the first person? Today I won’t let anyone work with my son who is not truly interested in knowing his inner world.

    Looking forward to hearing more from you, and hope you come visit me, too.

  2. Varda, so glad you reached out! It is surprising how few “specialists” and therapists in the field know of the blogs by adult autists. I look forward to visiting your site.

  3. Oops! I wrote and it disappeared! 😦 I will try and re-do! 🙂 Thank you Ariane for yet another inspiring post! You give me such inspiration! I thank you too for posting the blogs as some of them I didn’t know about and I look forward to reading! 🙂 I appreciate you sharing my story with others as well! I think it is important to show that just by changing our perceptions and assumptions we can bring about such freedom from our fears and turmoils regarding autism. I have been blessed with a beautiful son! Raising awareness is a must! Blessings! B~

    • Hi Becky, your story is one I think about often. When I read it the first time I showed it to Richard and he said, “I love that story!” It’s tough to have a child who isn’t speaking and writing beautifully, but what I am seeing is that all my fears won’t make Emma progress faster, they won’t guarantee that she will ever be like those writing their blogs. But those blogs give me hope and there’s great value in that, I think. Thanks for always writing, Becky. I love reading your comments.

  4. Aw! So sweet! You are both awesome! Yes, you always have to have hope! I think it helps me to take things a day at a time and to rejoice in the progress we do make on that day. Even if it is small…like Brett didn’t stim as much today. 🙂 I try not to think about the future more than I have too…..and quite honestly, the fears I did have in the past never came to be thankfully. I am an obessive worry wort so I check myself on it A LOT. I try to say, like Richard, is this REALLY going to help?? 🙂 Usually no, it won’t. 🙂 Tomorrow will most likely come and I hope we get through it to the best of our abilities! 🙂 It is hard to not know what is exactly going on inside Brett’s head but he gives us windows….his ways of letting us know. He is such a sweetie and for that, more than my “wants” for him, I am grateful. 🙂

  5. Catching up on your blog, has really helped me get through a tough day today. Thanks again for being such a positive and honest inspiration!

  6. Thank you, thank you, thank you! While my son is verbal he still struggles with expressing his emotions but then who doesn’t. Having a son on the spectrum has led me to working in the field of developmental disabilities (established term not mine), I have witnessed miraculous things by all the people I have worked with, all with the common desire of wanting to be seen, heard, understood. They want you to hear what they have to say. They may not be able to express in words their desires but they are always speaking to us; when we start listening with not just our ears but our hearts life changes, not just for them but for us as well, life expansds.

  7. Pingback: “Love Not Fear” | Emma's Hope Book

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s