Tag Archives: Temple Grandin

Social Expectations

Yesterday there was some discussion about accepting and rejecting social rules.  Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her.  When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session.  I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.

1.  “Giving eye contact when I don’t want to.”

2. “Being expected to answer verbally.”

3. “Being happy when I don’t feel up to it.”

4. “Keeping my body still”

5. “Trying to be Temple Grandin”

When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?”  Emma wrote, “Don’t you?”

So here’s my question to all of you…  if you could change a societal expectation, what would it be?

Oh, and this is the eagle Emma drew after her last session…

Emma's Eagle ~ January 29th, 2014

Emma’s Eagle ~ January 29th, 2014

Watch Emma Fly!

Years ago Richard and I went to hear Temple Grandin speak (this was before the documentary about her had been made).  She had slides and gave a terrific talk about what it was like growing up as an Autistic child in a not autistic friendly world.  After the talk she went into the front entrance of the auditorium where she sat near a table displaying her latest book.  I went over to tell her how much I enjoyed reading her two previous books and to ask her if she had any suggestions for me regarding Emma’s inability to stay seated when on an airplane  prior to take off and again once we landed.  (This was something Em had a terrible time dealing with and would get a look of abject panic, before launching into a high volumed scream that had all the passengers covering their ears.  We were pretty desperate to find some way to help her cope.)

Temple said she was pretty sure there were sensory issues at work and gave some suggestions of things we might do to mitigate those.  I remember thinking that Temple in no way resembled my daughter and then made the assumption that Temple must have been far more able when she was my daughter’s age than my daughter currently was.  Whether this is actually true or not is something I cannot know, but a version of this thought process on my part is one I’ve repeated over the years on more than a few occasions.  So desperate to quell my fears and worries I have sought to find my daughter’s adult replica.  I have made the mistake of comparing an adult, possibly an adult who is now even in their 30’s, 40’s or even 50’s, and then drawn conclusions about what I imagine they were like when they were my daughter’s age.

Comparing Em to any adult has proven to be unhelpful to me, to my daughter and, I imagine to the person I am comparing her to, if they were aware I was doing it.  In addition, comparing a child to an adult is never going to give an accurate view of anything, there are too many variables involved.  And this kind of thinking completely ignores the fact that all human beings progress, evolve and change.  This is an obvious statement when applied to a non autistic child, but somehow I came to believe that my Autistic child was different.  I worried she would not progress.  I worried she would not be able to learn.  I worried because, in part anyway, we were given information about our Autistic child that has been proven to be not true.  We were given information that was in direct contrast to presuming competence.  Just as Emma no longer suffers when traveling in an airplane, she also now reads and writes and has, as of three days ago, mastered the complicated skill of a “catch” at her trapeze school.

Excuse me while I jump up and down while wiping away my tears of joy.  Emma wasn’t able to do a catch upon her first try or second or even third.  Em has been going to trapeze school for more than two years.  She also goes to gymnastics once a week where she has been working hard for almost three years strengthening her core muscles.  In the last month she is now able to do a cartwheel.  Emma began learning to type two and a half years ago.  She practices every day.  She practices reading too.  She practices and works really hard.  None of this has come easily or automatically, there is no “magic” involved, unless magic means being given the opportunity to work toward her strengths, to learn and practice and the belief that she can and will succeed.  Watch that video again, because all her hard work is paying off.  Watch Emma fly!

Bungee jumping barefoot – December 2012

photo

IS Autism an Epidemic?

When Emma was diagnosed as Autistic, we read that autism was an “epidemic”.   I remember the figures – 1 in 166.  In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500.  Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before.  The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt.  What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer.  Wakefield, it seems, stood to make an enormous amount of money.  Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”.  Despite subsequent studies showing that his findings were false, people wondered.  After all, autism was an “epidemic” so what was causing the epidemic?  It seemed vaccines provided an answer.

Except, what if there was no epidemic?  What if the word epidemic was being used by organizations intent on raising money?  These were the questions I began to ask.  If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid?  And where were they now?  Why didn’t I know dozens and dozens of Autistic people?  They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them.  So began my search for Autistic people.  (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.)  I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them.  I found very few.  I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people.  When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one.  For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic.  It seemed a logical conclusion.  And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.

Then two things happened within a six-week period.  A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds:  Remapping the World of Autism who suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed.  It was a one-two punch; I began to question everything I thought I knew.  From Julia’s blog I began reading and reaching out to Autistic bloggers.  Through my, at first tentative, communications I began to find many, many more.  It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced.  The more I looked, the more I found.  Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.

One friend of mine and I were discussing all of this the other day.  He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable.  He said, “People like me would hide our Autistic traits as best we could.  We were still considered the weird kids and the outcasts, but we were not called Autistic.”  He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.”  He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”

As I think about all of this, I have more questions.  What about the autistic girls who were like my daughter?  Would my daughter, had she been born in the 50’s, have learned to “pass”?  And if so, what does that say about our school system, because Emma is in no way near grade level?  Would she have been deemed learning disabled, but taught how to “behave appropriately”?  Would she have, through punishment, been able to conform?  What about her language?  Would she have just been thought a “quiet” child?  The little girl who, if she’d been punished enough, learned to sit silently in the corner?  At what cost would this have occurred?  Or would we have been told to institutionalize her for the “good of the family”?  Would we have been advised to save our son and ourselves from being “dragged down”?  Has our thinking changed so much?

I ask these questions honestly.  It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004.  When I was still looking, I never, not for a second, thought in finding, I would also find hope.   It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without.  Friendships that are vitally important to me, people I love and look forward to seeing and spending time with.  People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism.  People who try to help me understand what it is like living in a society that does not want to see or hear them.  People who do not enjoy the basic rights I enjoy and do not even think about.  People who are condemned, abused and misunderstood.  And yet, that is exactly what happened.

An Inability to Generalize

I first heard that term used in reference to Emma almost seven years ago now.  It was one of those things people say, in this case her early intervention therapists, where you hear the words, you know what they are saying, but how exactly this is being applied to one’s own child suddenly doesn’t seem clear at all.

Emma, like many children diagnosed with autism, has a difficult time applying something she’s learned in different situations and settings.  For example when she was much younger, I tried to teach her what a t-shirt looked like by holding up an actual t-shirt, one of hers with a pink heart on it, she was able to remember what that particular t-shirt looked like and called it a “t-shirt”.  If I then took out a different t-shirt, one of mine or a different colored t-shirt from her drawer, she was not necessarily able to understand that this too was called a “t-shirt”.  If I showed her a flashcard with a green t-shirt and explained that this was the color green and then pointed to a slightly different shade of green, and perhaps on a chair, she wasn’t able to tell me that the color I was pointing to was green.  Temple Grandin, speaks about this at length, she calls it “thinking in pictures.”  She says she stores images in her mind and then flips through the images to come up with the correct one to fit the word being used.  She then goes on to describe how problematic this retrieval system is for her.  One can easily understand how difficult that must be.

Over the weekend I worked with Emma on two words:  “yes” and “not”.  “Yes” was a bit easier for her to incorporate into her writing, but “not” completely threw her.  If I said, “Emma, what are these?” and pointed to a picture of three trucks.  She answered correctly, “These are trucks.”  If I then asked her, “Are these trucks?” pointing to the trucks, she was able to understand that if you answer, “Yes, these are trucks” it didn’t change the structure of the sentence, one just needed to add “yes” to the beginning of the sentence.  But if I then asked, “Emma, are these trucks?” while pointing to three frogs, she had a terrible time answering, “These are not trucks.”  When I asked her, “Emma, give me the one that cannot walk,” from a field of four objects: a bus, a truck, a plane and a kid,” she handed me the kid.

I know Emma understands what “not” means, but in this context she was baffled.  It reminded me of those first few years when we were new to all of this, and almost constantly perplexed by almost everything she said and did.  I remember watching in dismay as she proceeded to memorize several hundred flashcards that her therapists used with her.  The therapist would hold up a card with a picture of a bike, and Emma would shout, “bike!”, the card with a dress, Emma would yell, “dress!” and on it went.  I fully expected her to go on to a regular kindergarten, at the rate she was going.  But very quickly I realized that though she had no trouble with her memory, could memorize some 400 flashcards, she could not use the information beyond the flashcards.  In other words, the information wasn’t being translated across a larger field.  She did not use the words, we now knew she knew in everyday sentences.  If we went out into the park and I saw a kid on a bike and said, “Em, look!  What’s that kid riding on?” she couldn’t tell me it was a bike.  It didn’t look exactly like the flashcard with a bike.  For one thing it was a kid’s bike and for another it had pink plastic tassels on the handlebars and a little bell with a picture of Dora on it.  This bike looked completely different from the bike on the flashcard and so Emma was at a loss as to what this new thing was called.

The good news is, Emma now can identify a bike, any bike, but it took awhile.  This is what we are up against when trying to teach Emma.

For more on Emma’s courageous journey through a childhood of autism and our admiration for her, go to: www.EmmasHopeBook.com

Emma with her green blanket when she was 3.