Misconceptions

Love Anthony is now in paperback, which means, among other things, that it has a new cover design.  I love the new cover.  I think it’s eye-catching and aesthetically pleasing, and the image is even highly relevant to the story.  Books covers are so important.  It’s the first thing a potential reader sees and can be the singular, pivotal reason why someone picks that book up and decides to see what’s inside or alternatively decides to walk away and choose something else.  The entire content of book can be deemed desirable or undesirable based on a quick glance at the cover.  So many unspoken assumptions are made about the story on the inside based on the cover on the outside.

This has me thinking about autism.  I’ve been speaking about autism at book events since September, and there are a lot of false assumptions circulating out there, especially among people not directly affected by autism—so many misconceptions based on a quick glance at someone’s “outside cover” with little or no experience with the “inside story.”  Many of these misconceptions have been told and retold for so long, they’ve reached an almost urban myth status.

• ·      Nonverbal people with autism don’t understand language.
• ·      People with autism are cognitively impaired, or less nicely put, mentally retarded.
• ·      People with autism don’t feel love.

Most people I talk with who aren’t directly affected by autism often admit to me that the sum total of what they know about it was gleaned from Dustin Hoffman’s performance in Rain Man.

So let’s “open the book” and debunk these myths.

Myth #1: Nonverbal people with autism don’t understand language.

It’s possible that for some nonverbal autistic people, language is not intelligible.  But what if it is?  Can you know for sure?  I think it’s safer and far more humane to assume that all nonverbal people with autism have inner voices.  They understand what you’re saying.  And they are listening.

I’d like to share a couple of examples here of nonverbal autistic people, heroes really, who have battled and broken through the silence to reveal their inner voices.

Carly Fleishman: “I want people to understand that autistic people are people and we all have an inner voice.”

http://carlysvoice.com/home/

Elizabeth Bonker: “On the dark side is the traditional belief that we have no language. Free your minds from disbelief.”

http://www.youtube.com/watch?feature=player_embedded&v=VcEM-lsAgf8

Myth #2: People with autism are cognitively impaired.

Some people with autism do have some additional cognitive challenges, but IQ tests that rely on expression of language or pointing, outputs that can be unavailable or severely impaired in some autistic people, aren’t going to be sensitive enough to reveal to the intelligence that might lie within.

Autism does not equal unintelligent.  Autism does not equal unable to learn.  In fact, some of the smartest people living on the planet today have Asperger’s--Temple Grandin and Daniel Tammet, to name two.  It’s been speculated by many that if Albert Einstein, Thomas Jefferson, and Wolfgang Mozart were alive today, they’d be diagnosed on the spectrum.  A pretty smart crowd, if you ask me.

Myth #3: Autistic people don’t feel love.

I recently did a book event with AndrewSolomon, author of Far from the Tree, on World Autism Day in Toronto, and he admitted to having this misapprehension prior to doing the research for his book.

It’s easy to see where this preconception comes from, especially if viewed from a distance, “from the cover” so to speak.  If a child can’t say “I love you,” if he doesn’t like to be hugged, if he can’t make eye contact and exchange all the magic that can happen in a shared gaze, if love can’t be reciprocated in the ways we traditionally show and feel it, is love there?

It is.  Without question.

All of the parents I know and spoke with about autism love their autistic kids and feel loved in return.  And I’ve witnessed it—in a knowing smile, in an exuberant hand flapping, in an unspoken energy, in how hard these kids work to please their parents.

Myth #4: People with autism are poor social communicators.

Wait, you’re thinking, this one can’t be a myth.  This is the actual clinical description of autism.  According to DSM IV, autism is characterized by difficulties in social interaction, verbal and nonverbal communication, and repetitive, restrictive behaviors.  Even people with autism who can speak have trouble communicating, especially with comprehension of double meaning, facial expression, and body language.  This deficit in social communication is a DEFINING symptom of autism.

So if it’s a defining symptom, how can it be a myth?

In March, I attended the Tucson Festival of Books to promote Love Anthony.  In addition to the two panels I was on with other fiction writers, I was scheduled to be on a speaking panel with JohnElder Robison.  John has written three books—Look Me in the Eye, Be Different, and Raising Cubby.  John has Asperger’s.

About ten minutes before our scheduled time to begin, the room was already filled to capacity (300) with people standing in the hall, willing to stay and only listen.  John arrived, and I introduced myself.  He said hello, gave me a courtesy, fleeting moment of eye contact, and then he paced.

We were supposed to sit side-by-side at a table before set microphones and cards bearing our names and next to a moderator, but John wasn’t going to be able to sit still.  He needed to stand and move.  The organizers adjusted, and I decided to join him and stand, too.  Meanwhile, John continued moving, touching everything on the table as he passed it.

I do a lot of speaking, and I like to think I’m pretty good at it.  One of the challenges in speaking in front of an audience of 300 is to make everyone feel included, like they’re part of an intimate conversation.  It involves not just getting up and talking but talking TO PEOPLE, engaging them in what you have to say, sharing an experience together.  In short, it involves social communication.

And here is John, pacing around with Asperger’s.

So I thought to myself, “Okay, Lisa.  You’re probably going to have carry this hour.  He’s not going to be able to do this.”

I couldn’t have been more wrong.  He was AWESOME!  He was smart, funny, dynamic, and incredibly entertaining.  HE was the one who could’ve carried the whole hour (and pretty much did).  After our presentation, the line of people waiting to connect with him personally and have books signed far exceeded the line of people in front of me.

So there you go.  John has autism, AND he’s an exceptional communicator.  Myth busted.

The great lesson in all of this has been told to me over and over by parents of children with autism.  “If you’ve met one child with autism, you’ve met one child with autism.”  Or, put another way—please don’t judge a book by its cover.

Making a Contribution

I’ve had the good fortune to see many of my “old” neuroscientist friends over the past year through book tour and speaking event travels or through the research I’m doing for my next book.  I love listening to them talk passionately about their research, and I especially love that I can still understand it all, as I now spend my time writing novels rather than scientific research grants or papers.

Alzheimer’s, anxiety, bipolar, Huntington’s, autism, schizophrenia, Parkinson’s.

Cytokines, glutamate receptor upregulation, gene expression, caudate nucleus, amygdala, CAG expansion, GABA.

These brilliant scientists are making exciting and significant contributions to the body of knowledge that will someday lead to medical treatments and cures.  While I still love hanging out with scientists and learning about their latest research results and next set of hypotheses, and I always leave feeling awed and inspired, I also invariably leave feeling a bit stirred up.

I used to do what they do!  I have a Ph.D. in neuroscience from Harvard.  I used to do brain research at prestigious places such as Mass General, McLean Hospital, and the NIH.  I still could, but I’ve chosen to dedicate my career to writing novels instead.  At times, this feels like a really strange choice.  My former colleagues are making critical contributions to science.  What am I doing?

I write about people living with neurological diseases or conditions who are ignored, feared, and misunderstood.  I write novels.  Not scientific research papers, not clinical review papers, not even non-fiction.  Why on earth do I do this?  What is the value in a neuroscientist writing fiction?  What is my contribution?  Is it to science or literature or something else entirely?

I’ve spent considerable time pondering these questions.  Here’s what I’ve come up with.

Fiction is accessible.  Unless directly affected, most people aren’t going to read a scientific research article about Alzheimer’s, brain injury, or autism.  Most people probably aren’t going to read a non-fiction book about these topics either.  Those texts tend to be too dry, too clinical, too technical, too impersonal, too intellectual.  They’re often filled with facts and statistics.

Every 68 seconds, someone in the US is diagnosed with Alzheimer’s.

1 in 88 children in the US is on the autism spectrum.

The science is necessary (and fascinating to neuro-geeks like me), and the facts and statistics are staggering, but numbers aren’t what we’re all looking for.  Five and half million Americans have Alzheimer’s Disease.  They and all the people who love them are all in desperate need of learning more about this disease, but they want to understand it in a way that’s accessible.  They want to understand it with their hearts, not just their heads.

What does it feel like to have Alzheimer’s, a traumatic brain injury, autism, Huntington's?  Most of us don’t know, and reading the clinical literature is either too daunting or too scary or both.

Fiction is a powerful way in.  Most people aren’t going to read the article about autism in the April issue of the Journal of Neuroscience.  But they might read a novel about a family living with autism.  Fiction gives us access to what might otherwise be too overwhelming to consider.  Fiction can give us the humanity behind the science and the statistics.

If you read my novels, you will learn some real science and clinical information (yes, I sneak it in).  But beyond intellectual knowledge, what I think and hope most readers take away from my books is a compassionate awareness.

Compassionate awareness.  This is my contribution.  And I believe it’s an important contribution because it is this kind of awareness that can help break down the stigma and alienation imposed on families affected by these diseases and conditions.  It is compassionate awareness that says to the world, “I see you.  You exist.  You matter.  And I care.”

While I’m proud of this contribution, I’d like to do more, and I’d like to ask for your help.

This month is Autism Awareness Month.  My third novel, Love Anthony, is about autism.  If you’ve read Love Anthony, and it’s made you more compassionately aware of autism as you walk through the world, if you finished it and felt educated, entertained, inspired, if you feel like you now have more sensitivity and empathy for families living with autism, then I’m asking you to get involved.

I’m asking you to take that compassionate awareness you now have and donate something to Autism Speaks or an autism organization of your choice.  It doesn’t have to be much to make a big impact.  I think it’s fair to guesstimate that at least two million Americans have read Still Alice.  Imagine if each reader had donated $1 to the Alzheimer’s Association.  That would’ve made a powerful and amazing contribution to Alzheimer’s care and research.  Let’s do that for autism.  Let’s see how powerful and amazing this readership can be.

Please consider making a contribution to Autism Speaks though this link:

http://www.autismspeaks.org/ways-give?utm_source=autismspeaks.org&utm_content=ways-to-give&utm_medium=menu&utm_campaign=waysgive

And if you do, please comment here or shout it out on Facebook or Twitter.  Let others know, and maybe you’ll inspire them to contribute, too.

Thank you,

Lisa Genova