Tag Archives: Myths about Autism

Raging Screams and Shame

The other week I was present for the following typed exchange by two people.  Both are Autistic and both cannot use spoken language to communicate.  (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)

Layla:  You have an extremely loud stomp.  (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)

Jerry:  Is that a guess or are you certain?

Layla:  If you tried to hide it then you gave away the secret.

Jerry:  That is what I am behaving like on some days but proud I am not.

Layla: I heard it all and was curious and wanted to give help.

Jerry: Really do you believe that I am not evil?  (J. turns his head so he is staring down at the table.  His body is completely still.  It is a noticeable change from the way he usually sits while having a conversation with Layla.)

Layla:  Evil is not this and best to forgive yourself.

Jerry:  Thank you for not judging me.

Layla:  I  only ask for the same respect.

Jerry:  The deal is on.

I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood.  Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment.  As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.

As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality.  Jerry expressed profound shame and upset and Layla responded with  identification and deep compassion.

Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night.  I wrote about that ‘here.’  One of the things she typed was:  “Pounding terror is all that remains.”  More recently she wrote, “The raging screams in my head are starving and want to consume me.”

Raging screams…  Pounding terror…

August, 2014

August, 2014

Unable to Speak Does Not Mean Unable to Think

*Emma gave me her permission to write about this.

“How old is she?” a stranger asked the other day as Richard, Emma and I searched the grocery store shelves for Emma’s favorite jam.  Emma was bounding back and forth between where Richard and I were standing peering at the shelf where her jam is usually located, to the dairy case, twirling her string and saying things like, “but where is it?  I don’t know!  It’s gone!  Somebody took it.  You threw it! Aw sweetheart…”

The strange man then observed, “She’s acting like a young child.”

My first reaction was to move Emma away from this person so she wouldn’t hear any more of his words.  My second reaction was to go over to the man and say, “You know, my daughter understands everything you’re saying.”

“I wasn’t trying to be rude,” came the stranger’s reply.

“Yes, but in fact you were,” was my knee-jerk response before walking away.  *I’m not proud of this and I know this was an opportunity for a “teaching moment” but I didn’t have it in me.*

Later, Emma and I talked about what happened.  Emma told me it hurts her feelings when people do this – talk about her and say things about her as though she couldn’t hear them, or doesn’t understand everything they’re saying.

I want to disappear when people talk about me.“  Emma wrote to Soma last September.  I wrote about that session in more detail ‘here.’

People, usually, do not mean to be rude, they do not mean to say hurtful things about my daughter in front of her, in fact people do not think about what they’re saying a great deal of the time.  As my daughter does not protest or respond when they talk about her in front of her, people assume she doesn’t want to or cannot understand.  It doesn’t occur to them that she doesn’t respond because the words she’d like to say do not come out of her mouth in the way she intends.  Until Emma was able to write her thoughts, people (including us) believed what they thought they were seeing, even though what they thought they were seeing was completely incorrect.  In cases like my daughter – seeing is NOT believing.

When people do not speak, they are often viewed as not being able to comprehend things said.  People come to the conclusion that if you cannot say what you mean, you must not want to, or you are unable to understand what others are saying.  There’s a false logic at work here.  Particularly when it comes to Autistic people.  When someone is unable to speak, cannot say what is in their mind, is unable to voice their ideas, thoughts and opinions, it does not then follow that they do not have ideas, thoughts and opinions that they would like to express.

Emma ~ 2003

Emma ~ 2003

What Is Autism?

Google that term and one is faced with a lengthy list of deficits.  The definitions of autism are cloaked in subjective language.  All the words used are in relation to non Autistic neurology: “severe impairment”, “life long developmental disorder”,  “social impairment” and one site went so far as to say, “A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”  None of these “definitions” have been helpful to me, personally, nor have I found them to be factually correct.  The most common definitions of autism out there have increased my fear and encouraged me to pursue therapies and treatments that have done far more harm than good.

People often ask, “so what is autism exactly?”  Over the years I’ve had a variety of responses, but like the definitions above, they always seemed inadequate, unhelpful and inaccurate.  So now, when I answer that question all I can come up with is this:  Autism is a type of neurology.   Short and sweet.  No judgment, no comparison, just six words.  It is a neurology.  It’s the best way I know of to describe what is often mired in negativity and judgment.

Comparing Autism to non autistic neurology has gotten me into a great deal of trouble over the years.  I have found it is important that I avoid doing that.  (I’m keeping this personal.  I speak only for myself and do not presume this is how others feel.)  For years I worried about my daughter’s ability to have friends.  If I believe the common definitions of autism, her ability to make friends is “impaired”.  Yet the impairment is less about her desire and attempts to have friends as it is about non Autistic neurology being out of sync with hers.  When Em was in Florida with her friend Henry, they had no problem hanging out together, laughing and enjoying each other’s company.  Just because they typed to each other and didn’t engage in endless verbal conversation, didn’t mean they didn’t have a blast together.

If I listened to and believed the definitions of autism, I might think my child couldn’t learn to read or write.  I would be wrong.   Not only has my daughter learned to read and write, she also has learned to type.  Because I no longer believe the common definitions regarding autism I do not limit what she should or shouldn’t do.  I do not limit her future with set ideas about her future capabilities.  I have found it helpful to disregard those organizations and people who insist that Autism is a dreadful “affliction” and compare rates of autism diagnosis with cancer.

So what is a longer definition of autism?

It’s a terrific question.  Finding an answer that is factual as well as helpful to me, has been difficult to find.  However there are a few who have done a terrific job defining autism and in doing so have also helped me, personally.  Autistic Self Advocacy Network (ASAN) defines Autism ‘here‘ and this post by Brenda, over at Mama Be Good, gives a great, comprehensive answer to the question and at the end includes her personal observations of her child and what it’s been like to parent an Autistic child.

So I ask you, how do you answer the question – What is Autism?

Em on her way back to Henry’s house – April 2013

Em pets the kitty