Tag Archives: impairments

Autism Graphics

In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases.   The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry.  Impairment in imagination?

You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay?  Did he get you?”  And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.”  Hilarious.  Only what I was feeling when I read “Impairment of imagination” was not hilarious.  No.  Not at all.

Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.”  Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second.  The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people.  I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.

Below this, the graphic reads, “does not understand other people’s points of view or feelings.”  Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence.  To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people.  Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism.  And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more.  They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.

The next line of text on the graphic reads, “Agitated by changes in routine.”  This line would actually be fine if it weren’t for all that precedes it.  But I would also suggest that this line could be said about all young children.  And in the end this is my criticism of the information that is being given to people about autism.  Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children.  I’ve written about this before ‘here‘, ‘here‘ and ‘here.’   These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.

This particular graphic goes on with headings of:  “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says:  “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…”  NO!  This is absolutely wrong.  You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE.  And again, I  want to SCREAM!  Who is writing something like this?  This is a graphic that is being used by a school for Autistic children.  It is a graphic that is stating things as though proven fact.  A graphic that parents, children, educators are seeing.

We have to ask ourselves – WHAT ARE WE DOING?  How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?

Please.  If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it.  Do NOT believe that these things are a fact, just because they are written as though they are.  Do not add to the misinformation by repeating it.  DO NOT.  It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.

We must all become critical thinkers when it comes to information about autism. We know very little about the human brain.  The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.

Emma ~ 2010

Emma ~ 2010

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“Social Impairment”

“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics.  As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely  masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation.  The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I  was filled with admiration.  Self care is such a wonderful way to describe what I see her doing.  Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others.  This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all.  To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do.  (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy.  It isn’t a social impairment.  It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic.  My daughter does not lack a desire for friendship or have a disinterest in other people.   Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues.  Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise.   But when we were given Emma’s diagnosis, I did not question these various theories.  I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

Oh how wrong I was…

Emma holding Teddy

Emma holding Teddy With her String