Simsek Strikes

Autism Awareness, Part Four: Dr. Martha Herbert on Autism, Genetics, and Environmental Toxicity

The following is the concluding segment from a lecture Dr. Herbert gave at a conference in Maine.  Her lecture, entitled "Genes and Environment, Developmental and Chronic:  An Inclusive Approach to Autism Science" was eye-opening to say the least, and is well-worth watching for anyone interested in the inter-connectivity of autism, genetics, and environmental toxicity.  Her closing should be a call to awareness and action for all of us:

 

Will Women Lead the Environmental Health Movement?

How can we imagine that ordinary people might be able successfully to challenge the overwhelming internal logic of the global economic system because of concern over environmental health?

 There is an Ethiopian proverb that when spider webs unite they can tie up a lion.  The lion of the globally destructive patterns of production and consumption may one day be ensnared and ultimately domesticated by the gossamer webs of human consciousness and community action.  What will happen when ordinary people, whose lives are often mortally wounded by the destruction of the biosphere, come to understand that their wounds are so often intimately related to the wounds of the earth?

 What will happen when a working woman comes to the realization that her own breast cancer, her husband's lymphoma, her brother's melanoma, her son's learning disability, his best friend's attention deficit disorder, her daughter's endometriosis, her niece's cleft palate, her cousin's chronic anxiety and panic disorder, her best friend's severe chemical sensitivity, her best friend's daughter's asthma, her uncle's infertility, her neighbor's son's testicular cancer, and her sister's daughter's childhood leukemia may form a pattern?

What will happen when this working woman begins to understand that these new human pandemics that effect her community and her family directly may be profoundly connected to what is happening to the fish in the sea, the birds in the sky, and the animals of the earth?  I believe this working woman will understand that the cancers and infertilities of the fish, the disappearance of the frogs, the cleft palates of the mice, the shifts in gender orientations of the birds, the susceptibility to viruses and infections of the seals, the disappearance of the song birds--that all of this and much, much more may be telling us a story that is also our story.  

 The story that the birds and the fish and the mice are telling us is the story of inter-being;  the story that all life and earth is truly, breath-takingly, concretely connected right now, and that what we do to the mice of the field, and the birds of the sky, and the creatures of the forrest is also, ultimately, what we do to ourselves and to our families right now.  

 I do not believe that we can hide from this story much longer.  It is one of the great stories of our time.  The very human protest against the massive, entrenched, and toxic system of global production and consumption may seem unrealistic economically and politically, but is it any less realistic than the Quaker protests in Europe and the United States that played such a key role in ending the 350 year-old slave trade?  I do not invoke the parallel to ending the slave trade lightly, for we are as enchained by toxic chemicals, and by ozone depletion, by climate change and the destruction of nature as we once were enchained by slavery.  I believe that environmental health may be one of the greatest human rights issues of the new millennium, and thus our biggest challenge.

 

(Please forgive any slight discrepancies in my transcription - I did my best but I'm no professional!)

Autism Awareness - Part Three: The Down Side of the Up-Lifting

When I bacame an Autism Parent (because, let's face it, that's what happens when your beloved off spring is diagnosed) I chose not to be secretive about the whole affair.  As hard as it was to get my head and heart around this new reality, once I was able to regain some semblance of emotional stability I decided that we had some social obligation to help other people understand autism a little better.  So I told family and friends.  I told acquaintences who often saw Ellie and strangers who tried to engage her when we were out and about.  I answered questions and I did my best not to be defensive or thin-skinned about the whole thing.  

And as word got out, supportive people began sending me inspirational stories, emails, and videos about autistic kids and adults.  There was the artistic teen in Florida, the Autistic Prom King, the Basketball Star and many more, and they are wonderful, amazing stories of success.  At first, I saw them as beacons of hope that my own children could follow:  there was no limit to their potential.  This was a really good thing in some ways, because once you get a diagnosis no one can tell you what to expect.  No matter who I asked, no one could tell me if Ellie would ever be verbal, what her limitations might be, whether or not she'd be able to go to college, get a job, become independant.  They could tell me that they thought that she was smart, and they thought she had a good chance of catching up in some ways, but no more than that. So at first these stories really did inspire me not to lose hope:  to see that there was great potential for happiness and independance in her future.

But since those early days I have begun to see a down side to all this cheer.  Because while these kids' stories are amazing, they paint a picture too rosie to reflect reality for many families.  And that's dangerous, because as cities and states and the federal government are all looking for places to cut their budgets and tighten their belts, we can't afford to have that picture shape the conversation about services for special needs.  Already families in most states do not have access to the funds necessary to provide essential services to autistic children and their families and if law-makers and Joe Public believe that autism isn't that big a deal because of the basketball-playing wonder boy they saw on YouTube, many more children and families are going to suffer. 

Because autism treatment isn't a luxury, it's a necessity, and yet the cost of paying for it out-of-pocket is prohibitive for all but the wealthy.  The rest of us who planned as best we could for our children's futures but couldn't have predicted that those plans would include ABA therapies, speech therapies, Occupational therapies, Social Skills therapy and so on are left at the whims of state-funded programs. And the funding there is already pitiful and erratic.  Funds very from city to city, town to town, state to state.  Many states do not require insurence companies to cover even basic autism therapies such as ABA.  Often people are forced to move to other states to get necessary services, take out exorbitant, crushing personal loans, mortgage the rest of their lives in order to, as one mom I know said, "ransom" their children.  Because the alternative is to leave the fate of their child to chance in the hope that they'll somehow make it in a system that too-often sees special needs children as disposable. (And before some of my good conservative friends start emailing me about "private charities" I should mention that I have yet to find any charitable autism therapy organizations, outside of a couple in the UK and Canada and New Zealand.)

When Ellie was diagnosed, our area agency had resorted to trying to train parents to be therapists because there wasn't enough money to provide the ABA necessary to the 2 and 3 year olds being diagnosed with autism.  In spite of the fact that trained, professional therapists typically don't treat their own children because the whole parent-thing gets in the way, the agency could see no alternative because their funds had been cut so severely that they could no-longer afford to hire ABA therapists to provide the intensive therapy necessary to help. What happened to families with two working parents who couldn't attend the daily classes? What happened to children whose parents were too overwhelmed, too busy, or couldn't get the hang of therapy?  I don't know.  I do know we moved heaven and earth to get there, calling in the whole extended family so that I could get in with Ellie every day because it wasn't much, but it was all there was.  And I know that even for me, with all the support of my family and a great desire to do whatever it took, therapy with me was less effective than with a professional. It couldn't help but be.  Moreover, I know that I was lucky because Ellie's symptoms were so much milder than those of many of her "classmates."

And now?  Even that paltry funding that provided basic training for parents is in danger.  And the lives of other little Ellies being diagnosed today, and the lives of children whose challenges are much more profound than Ellie's, hang in the balance.  With good early supports and services, and intensive speech and behavioral therapies many more of them could become functioning, productive adults.  But without them, many more will be dependant on others forever.

So the next time you see an inspirational autism video or read an amazing article about someone with autism who overcame great odds and found success and happiness in life, by all means cheer for them, because it is wonderful and amazing. But remember that there are thousands of others, invisbile in these stories, just trying to learn to speak, to use a toilet, to make eye-contact, or to overcome myriad challenges enough to do the things most children do naturally.  And they and their families need all the help they can get if they're to have any hope for a brighter future.

Autism Awareness: Face Value Continued

My friend Ronke always sends me the most amazing information.  She is brilliant and thoughtful and I honestly don't know how she finds the time to do research for me, but she does and she never fails to find something new and incredible for me to learn.  So, in response to my post about Lexi's issues recognizing faces, she sent me a link to this video.  It is lengthy, but in essence it is a lecture given at Yale about studies being done to learn more about the way autistic brains process facial information in comparisson to neurotypical brains. As Ronke explained in her message:

There's this really cool documentary that talks about how there is a region in the brain specialized for face recognition (the fusiform face area), and another that we use just for objects. It says that people with autism do not have activity in the face recognition region, but rely on the "object" recognition region when discriminating faces. Because the object recognition is not specialized for face recognition, they have to work much harder to recognize faces. I couldn't find it online, but this guy's stuff was referenced.

If you are at all interested in the topic, it is fascinating...

Now, there is very little uninterrupted time in my day, so I've been stealing minutes here and there to listen to this.  And when I was only about half way through, I found myself riding alone in the car with Lexi and wondering how, if at all, she was coming along with her attempts to pay more attention to faces.  Does she notice more now?  Does she differentiate between features from one person to the next?  So I asked her, and she said that she's trying to look at faces more at home, when she remembers.  She's said that she's "too excited" when we're out places to remember to look at the faces around her because her "brain can only think about one thing at a time and then it's thinking about the exciting things."  

So I asked her what things she's noticing about the faces in her family. For example, what things were different about Mommy and Daddy's faces?  I figured that this was an easy place to start since Paulo and I look nothing alike.  She thought for a moment and then said that Paulo's eyes were brown and mine were hazel.  I asked her what else she noticed, and she went to the hair, so I redirected her.  What about our faces were different?  How were our noses different, or our mouths?  She didn't know.  They looked the same to her, she said. In fact, she couldn't come up with any other differences in our faces besides the hair and eye color.

Next I asked her about her friends, and she was quick to assure me that she was getting better with them.  I asked her speciaifcally about two little girls she likes to play with (we'll call them S and B).  Both girls are about the same height and size.  They both have blond hair and blue eyes, so how can she tell them apart?  "Oh, that's easy!" she explained, "I know S's voice is different!"  But when asked if she could tell them apart if they stood side-by-side and didn't speak she wasn't so confident.  "That would be tough," she conceded.

So our next project may be a face book for her. I'm going to try to collect pictures of all the friends and family we interact with and print them as 8x11s to put into a book.  Hopefully, we can use this book to help her compare features, recognize the differences in people's faces, and boost her ability to "name that friend" even if they're not in their usual context.  I'll try to let you know what we learn!

Autism Awareness, Part Two : Face Value

It was the realization that Lexi couldn't recognize people's faces that finally led us to have her tested for Aspergers.  There should have been other indicators we noticed first, like the fact that she prefered to be left alone as a baby, or the three-hour-long meltdowns she had at three, or the vomitting-at-will, or the sensory reactions to hairdriers, vacuums, hand-blowers in public restrooms, tags in her clothes, or certain smells that made her cry.  Maybe we should have known something was up when she turned her back on all the people in the room to flip through a pile of books, one page at a time, for an hour or more.  At age one. What?  We thought she was just super smart!

Or maybe it should have been the way she couldn't tell her friends or teachers apart.  

Yeah, in spite of all the other stuff, it was that last part that would eventually get us.  We'd thought it was just absent-mindedness.   Maybe she was just REALLY bad with names?  But after Ellie's diagnosis (and the thousands of pages of questions I'd had to answer) it became pretty clear that something was up with Lexi, too.  From all my reading, I felt pretty certain it was Aspergers, but I wasn't sure if there was a point in having her tested for a while.  She was happy, she had friends, and we were managing the sensory stuff.  So maybe we'd keep going?

But then, almost by accident, I discovered that it wasn't just names.  She didn't look at faces.  She couldn't tell one face from another but was identifying people by other clues:  hair color and style, height, body shape, location.  It wasn't a very good system, but it was better than nothing.  Because she really didn't know how to tell one face from the next.  

So it was off to testing and yes, it was Asperger's Sydrome, thank-you-very-much.

That means a whole lot of things, but let's just start with the face thing.  Not looking at faces much means not recognizing facial expressions, either.  Are you happy?  Sad?  Worried? Curious? Angry?  Don't expect Lexi to figure it out without being told (or being clued in some other way), because she won't. But there's more to it, too.  If you don't watch other people's faces, chances are you don't think much about what you're doing with your own face.  And that means that Lexi's face doesn't try to mimic what it sees all that much.  In fact, she's often not aware of what signals her face is sending at all.  

Case in point:  this is Lexi's "I'm having the best time EVER!!" face.  Seriously.  When you take me off this horse I'm going to scream like you're dismembering me.

Knowing this, I thought I'd try a little experiment one day at lunch.  I'd ask each of the older kids to make a face showing a certain emotion, take pictures, and compare.  As expected, I could figure out what Spencer was showing me every time. Lexi was just as sure that she was making completely different expressions each time. And while she does have a variety of smiles, I'm pretty sure I couldn't identify the expressions without the labels. Could you?  (Oh, and please forgive the food faces:  they were eating pizza at the time when I quizzed them.)

Autism Awareness: Part One

April is Autism Awareness month and, with two kids on the spectrum, we have definitely become more aware of autism in the past several years.  Like learning more about almost anything, it didn't take long for me to realize how little I actually knew.  And as we've lived with the diagnosis it's become clear that most of the people we encounter are just as clueless as we were. 

Recently a friend's child was also diagnosed.  I spoke with her after the evaluation and I remembered acutely my own feelings after Ellie was diagnosed:  like I was suddenly walking around underwater. Nothing had changed--I was still me, and Ellie was still the same little girl she was before the Big A was attached to her -- but everything was different.  It was hard to breath.  To talk to people.  To say the words in my head, never mind out-loud to others:  Ellie has Autism.  Ellie is autistic.  I had to roll it around on my tongue over and over and over.  Get used to the taste and feel of it - sharp and bitter, shapeless and yet pointed.

I thought I was ready to hear what they had to say, but in my heart I wasn't. I was still in denial.  And no matter how gently they tried to deliver the blow, it couldn't help but knock me off my feet. Because I thought Autism was something else.  I thought that Ellie couldn't be autistic because she was so happy. She couldn't be autistic because she was so attached to me and so content to be held and cuddled. She couldn't be autistic because she seemed so normal (whatever that means.)  Because she was so smart, and so good at some things. Because she laughed hysterically when her siblings chased each other around the house and climbed her father to be tossed in the air. She was so strong, so physical, so intense.  She was just too focused on other things to bother speaking.  She was just too busy playing to pay attention when I called her.  She just flapped her arms like that because she was excited.  She was just independent.  Right?  All I saw was a sweet, happy little girl and the things I didn't see?  Well, I just didn't see them until someone pointed them out to me. 

What I should have seen were the things that were missing and the things that were off.  I should have noticed that she didn't wave. I should have noticed that she didn't point with her finger to show me things.  I should have noticed that not only didn't she talk, but she didn't understand, either.  She didn't follow directions.  She made eye contact with me but not most other people.  She didn't acknowledge people who came to the house.  She didn't care about kids her age.  She didn't usually look at my face to share an experience or to see how I was reacting.  She didn't smile at ladies in the supermarket when they talked to her.  In fact, she usually ignored them.  She often treated me like an instrument - she would put my hand on things she wanted opened, use my finger to point to things she wanted named, pull me to a problem she wanted solved so that I could figure it out for her, use my hand to draw pictures, letters, or numbers on her Magnadoodle. She preferred to watch balls roll or the spinning wheels on her toy train than to play pretend. She didn't mimic or imitate the things we did. She never asked for a drink or a snack or a toy - she just cried and let me figure it out. I should have seen these things as red flags, but I didn't.

And as I began to really see it all it suddenly seemed so obvious that I couldn't believe no one had told me earlier!  I couldn't believe I hadn't seen it myself, except that I had been so afraid of the A word.  I had seen the videos, the specials, and read the articles.  My heart had broken over and over for these parents whose children retreated into themselves and became distant enigmas.  All those blank, staring faces and silent voices, or the rocking bodies and shrieking lungs:  all I knew of Autism was this, and it was terrifying.  

Only that is not the only face of Autism.  This is Autism, too.  This happy girl who sings me awake in the morning is autistic.  This girl who loves animals and snuggling and tickle-fests?  The one who sits at the table each night smiling at her family and calling us by name, trying to tell us about her favorite episode of The Wonder Pets or a song at school? This girl who is teaching herself to read, who loves to paint and sing, who pulls my face to hers for long kisses and tickles me if she thinks I'm sad?  And then there's her sister with Asperger's who can charm you to bits and probably teach you something, too. This, too, is Autism, and it looks nothing like what we thought.

We are lucky.  Autism can go either way.  But because it can be so many things, because it has so many faces, we need to spread real awareness. When I tell you my daughters are autistic and you are surprised, look again.  Think again.  Look at their lovely faces, listen to their voices, watch them move, and add them to your inventory of what Autism looks like to you.  It does not always look like you imagined, and it is all around you.