Tag Archives: The Third Glance

Autism Awareness ~ Not Fear

In the spirit of “Autism Awareness” month, I’ve decided to write at least a few posts this month devoted to the kind of “awareness” I would like to see more of.  Awareness can be subjective and the awareness being pushed, this month in particular but, most of the time is usually not the awareness I wish I had been given when my daughter was diagnosed almost nine years ago.  I believe awareness should help us, not make things more difficult.  In the best case scenario, awareness gives us options and makes us feel empowered to make better decisions.  Awareness is the opposite of ignorance, yet more often than not, when it comes to autism, so-called “awareness” becomes an abettor to ignorance.  This is not as it should be.  Awareness, in its true form, is a good thing, even if not easy, even if becoming aware is painful, even if awareness makes us uncomfortable, it (hopefully) leads us to act in a more thoughtful manner.

E., whose blog The Third Glance, is someone I urge everyone to follow.  I first became aware of E.’s blog shortly after I found Julia Bascom’s blog Just Stimming.  So within a 48 hour period I read Julia’s blog and then found E.’s blog and read My Cat is My HeroExecutive Function and Words, which describes in beautiful detail the pitfalls and distractions of having a conversation with a group of people.  Growing Up Autistic where she writes,  “Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense.”  A little farther along she writes, “I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.

I read E.’s blog and I learned and my awareness increased and I started to see how things I’d been told, things I’d been made “aware” of were actually incorrect. E.’s blog was the kind of awareness I needed.  It was the kind of awareness that helped me make different decisions.  This was the sort of awareness that helped me understand, helped me take more informed actions, helped me seek out more information.   Isn’t that what “awareness is really all about?  Isn’t awareness suppose to be about gaining knowledge?  I want knowledge.  I don’t want knowledge disguised as fear.

Em, having appropriated my black shawl, takes a morning stroll in Tampa


How My Fears Drove Me To Pursue a Cure

A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died.  This fear was so worrisome, so looming that I often stayed up at night worrying.  Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace.  My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter.  This fear, more than any other was what drove me to search for a “cure”.  When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies.  Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit.  Fade to black.

So what changed?  I began to read things like this –

Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:

“Feel the warmth of another soul                                                                                                   Ban the thoughts that block the light                                                                                           Refuse to hear what hurts, listen to the                                                                                    cry for help behind it

Well-being, feelings of unity                                                                                                             We are all the same”

Julia Bascom from her blog Just Stimming, her post Quiet Hands:

“1. When I was a little girl, they held my hands down in tacky glue while I cried.

5. When I was a little girl, I was autistic.  And when you’re autistic, it’s not abuse.  It’s therapy.”

Again from Julia, her post, The Obsessive Joy of Autism:

“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

The Third Glance, Words and Growing up Autistic: On Nature, Nurture and Abuse where she ends with this:

“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”

There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them.  I was able to pause, even for a moment, allowing me to ask, what is this?  What is this fear really?  And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions.  They were still not reality.  Not yet.  I was also able to realize those fears were causing me to act in irrational ways.  My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path.  That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed.  When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.

My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of.  But this was not based in fact, I don’t have the ability to see inside my child’s mind.  In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear.  Every single day, my daughter displays her vast intelligence.  When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that.  It was at that point that I realized I had a choice.  I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.

As I wrote recently in a comment to someone,  I chose the latter because to do otherwise and be wrong would be far, far worse.  This is something I cannot risk or would be able to forgive myself for.  But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen.  It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry.  My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.

I’m off to the AutCom conference!

“Minus One Equals Zero”

Emma reached for the last bag of Pirate’s Booty yesterday and said, “Minus one equals zero.”  Then she grabbed the bag and ate it’s contents.

I am constantly impressed with Emma’s mind and creative use of words.  I often think when I listen to her that there’s a kind of poetry in the way she phrases things, the way she will use seemingly unrelated words to describe something, such as “motorcycle bubbles” for the fireworks we see over the fourth of July.  It conjures up the noise, which she finds frightening, but also the visual image of bubbles, which I think she likes.  I don’t know if this is what she thinks of when she uses those words, but to me, it’s beautifully descriptive in a nuanced and personal way.  It’s very “Emma.”

When Emma and I did some literacy work yesterday, she was having a terrible time with a story we read and that she had to summarize.  I mentioned to Joe that we had a tough session, so when he worked with her later he used no verbal language and she was able to fly through the work.  During my session with her I was reminded of a post I read recently, written by an autistic adult who described how one day conversing and finding the correct words came relatively easily, but the following day, or even that afternoon, she found it almost impossible to express herself verbally.

I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults.  I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding.  But reading what it’s like for some other autistic people has been enlightening.  This is one of my favorite posts on the subject of language and words.  It is written by E. who has a blog – The Third Glance.  The post is entitled – Words.

Another post – Squawk? by Square 8 is another wonderful description of how talking can be akin to walking through a minefield for many on the spectrum.  Sadly this blog’s last entry was in November 2010.

Minus one equals…

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

The Third Glance, Theory for Autism and Flying

Two things – the first is that I wanted to mention a post I loved reading, written by E. of The Third Glance –  a 22 year-old autistic adult.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the stories I was referring to when I wrote in the Evolution of a Perception post, “The abuse, the prejudice, the cruelty all of these austists have endured is staggering.”  Richard and I also loved her post – My Cat Is My Hero.  It’s beautiful, but then so is the writer, E.

The second thing I want to mention is an interview with Henry and Kamila Markam about The Intense World Theory for Autism on the blog – Wrong Planet.  It’s interesting, problematic in that I worry it will be misinterpreted by some, (leading to the type of  universal parental blame demonstrated by both Kanner and Bettelheim) but this quote was such an amazingly accurate description of what I’ve always suspected Emma experiences, I had to read it twice just to be sure I’d read it correctly the first time.

“The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense…”

They go on to say – “The theory was triggered bottom up from neuroscientific studies and the real changing point for us was when we found that fear memories were so quickly acquired, lasted longer, were difficult to erase and over generalized. This put all the results into context because the neocortex could render the world intense, highly fragmented and overly specialized while the amygdala would dial up the emotional component of the intense world making it potentially extremely painful and aversive forcing the autistic child to take refuge in a secure bubble. If they don’t succeed to take refuge through repetitive behavior, routines, rocking, and other types of behaviors, then they may display self-injurious behavior – like ants crawling all over your body. The diversity comes from the fact that we are normally diverse and if you add hyperfunctional circuits to that then naturally each autistic child will be even more different from each other. It is like taking all our normal differences to an extreme. This challenges society to accommodate autists, but diversity is the key to social evolution and so it is a good challenge.”

We are flying out to Colorado this morning.  I wasn’t able to get a single seat together.  I even called the airlines and begged them to do something. I told them we were flying with two children, one of whom is autistic, but they said there was nothing they could do.  We aren’t even in the same rows!  Wish us luck.