Tag Archives: autism blogs

The Messiness of Blogging

Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life.  I just reread that post and my first response was to delete it.  But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it.  She wrote, “no.”  So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public.  To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives.  But this blog is not mine alone.  This blog is a group blog, written by three people, one of whom has their name featured on it, Emma.  (Emma has said she likes the name of the blog and does not want it changed.)

A blog is a curated version of life.  We tell what we are comfortable discussing, what we are aware of and understand at the time of writing.  But when writing about others, particularly family members, things get trickier.  Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult.  It is still not easy at all times.”  Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”  

My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them.  Even so, I am not always successful.  But more and more there’s a great deal I don’t write about.  If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to.  I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.

The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.”  Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.”  But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives.  So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.

Blogging is an intimate and immediate form of writing.  Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say.  It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting.  Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.

Blogging is the reality TV version of writing.  But even so, there is more left on the editing room floor than gets seen.  It is the nature of the beast.  Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.

WhiteWaterRafting copy

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