Author Archives: Richard Long

The Curious Incident of the Dog in the Night-Time: an opinion by Richard Long

Magnificent.

That’s my one word review.  If you want a more detailed critical analysis of the play’s many virtues (the few shortcomings can be filed in the nit-picky drawer), check out Ben Brantley’s New York Times review. I agree with his assessment almost point for point, though I was offended by some of his phrasing, like his description of Christopher, the play’s teenage autistic protagonist as: “a parent’s nightmare.”

That aside, Brantley does a wonderful job describing the exceptional direction, lighting, set design, sound design, choreography, and tour de force acting of Alex Sharp in the role of Christopher. Plus, there’s a great slide show! And a video!

What can I add to the conversation? Well, I’m the father of a soon-to-be-teenage autistic girl, an avid theatergoer, extremely opinionated, harshly critical and always correct. Most pertinently, I’m a person.

One of the things that bugs me about many fictional works with autistic characters is the implied or stated assertion that a specific autistic character represents all autistic people. When Christopher says he thinks that “metaphor” is nonsense early in the play, I admit that I rankled a bit, thinking something along the lines of: Oh, so this playwright thinks all autistic people think and talk with absolute literalism! Emma clearly loves metaphor and uses it very skillfully! Then I clamped down on my kneejerk reaction and recognized that the author was telling Christopher’s truth, not Emma’s. Christopher was a person.

In or out of the theater, I’m really annoyed by the ASD label and the gross misrepresentations of autistic people with cookie cutter characteristics which are total nonsense, particularly when used to define a group comprised of millions of individuals: Lack of empathy and compassion. Literal thinking. I could just as easily write an essay describing the “symptoms” of NASD (Non-Autistic Spectrum Disorder): self-obsessed, easily bored, oblivious to their surroundings, ruthlessly ambitious (or woefully apathetic), etc. etc. etc.

Given the amount of buzz this play is generating, I’m certain most people in the audience knew that the main character was autistic. What assumptions were packed in their bias baggage when they walked in the theater? What new assumptions were bulging out the sides when they walked out? Did they go away thinking Christopher was Autism personified, the spectrum poster boy? I have no idea. Did they automatically assume that the characters of Christopher’s father and mother represented every father of every autistic kid? I certainly hope not.

My own bias baggage was bursting at the seams before the play began. I was hoping for the best (a dear and very generous friend had given us the tickets and I wanted to rave about how wonderful it was) but I braced myself for the worst: the usual onslaught of tired and untrue generalizations about autism. I was very pleasantly surprised that the words “autism” and “autistic” were never spoken by any character. The audience is told that Christopher is in a special-education type school, but there are no teachers or doctors hammering home his diagnosis.

I was relieved that many of my “autistic cliché” buttons remained unpushed, yet there were some scenes that were especially difficult for me, like when Christopher ridicules the non-speaking and more severely disabled kids in his class, calling them “stupid” and “lazy.” I found that very upsetting, since Emma would be one of the kids he underestimates in such a demeaning way. However, I was able to see that viewpoint as Christopher’s truth (or the author/playwright projecting himself into Christopher’s character), which made it less personally offensive. It did hurt to hear things like that, but the pain I experienced was much less than the anguish I felt when Christopher learns how deeply his father has betrayed him.

As the parent of an autistic person, the scenes of Christopher’s journey to London by himself were the most harrowing. Looking back now, I wonder if my experience was really so much different than others in the audience. Perhaps some of them were also parents of autistics, and knew firsthand how terrifying it is to lose sight of your child in a crowd, knowing he or she will be overwhelmed and/or confused by sensory bombardment, or worse, that your child will be unable to speak well enough to tell anyone who their parents are, or where they live.

I’m quite sure that many of the audience members were parents of non-autistics. Maybe they also knew how terrifying it was to lose their children, even though their kids didn’t have sensory or speech issues. And even if they had never experienced that kind of loss as parent, it wouldn’t be hard to imagine it. A lost child is every parent’s worst nightmare (not having an autistic child, Mr. Brantley).

I doubt that this type of situation would be difficult to imagine for people who weren’t parents at all, and never will be. Haven’t we all had a childhood experience of being lost and alone? Don’t we still fear it as adults?

I’m not sure whether these distinctions between audience members really matter, outside of one’s ability to openly experience the inner lives and outward circumstances of the characters. All the characters in this and every well-written play represent some aspect of our shared humanity. Most people can relate in some way to well-drawn characters (even the monsters), because their essential humanity or lack of humanity speaks to our own felt and imagined worlds.

It is mentioned on a few occasions in the play that Christopher, “doesn’t like to be touched.” As Emma’s father, I know how painful it feels to not be able to hug Emma when she’s crying after an injury or upset. I want to comfort her (and myself, if I’m being honest). But Emma doesn’t want me to hug her like that. It makes her feel even more distressed. So yes, I felt that pain acutely every time it happened in the play–and it happened a lot. But again, I suspect that people who never had a parenting experience like mine felt a high degree of empathy (with both Christopher and his parents) when he pushed away his too-huggy mother and father.

One of my favorite recurring elements in the play was a tender hand-touching-hand routine between Christopher and his parents. It was clear that they had developed this interaction as a means of conveying their mutual love, concern, understanding and trust. I wonder what our world would be like if we were obliged to communicate without words when we were hurt or upset–where only a simple, silent pressing of palm against palm had to convey all our thoughts and emotions. I suspect it would be a helpful improvement, at least for us “talkers,” as Emma refers to non-autistic people like myself.

I so often get into trouble with words. Yet as a writer, as well as a person, spoken language is my primary communication toolbox. Emma has said that she doesn’t think in words. I still don’t fully understand what that means, how Emma really does think, or perceive the world, but I imagine it’s more like Christopher than myself.

“I see everything!” Christopher exclaims on the train to London, as scenes of the countryside flash by in the windows. Then he describes everything he sees at an accelerating pace, building to a crescendo of overwhelming sound, light and sensation. Fortunately for all of us, theater isn’t limited to words. Nor was the playwright Simon Stephens and the director Marianne Elliott, who did a spectacular job of utilizing every aspect of the form, to not only entertain, but to touch us as deeply and intimately as two palms pressed silently together.

Curious Incident of the Dog in the Night-Time, TheEthel Barrymore Theatre

Autism and Eugenics

As shocked as I was that Emma brought up the topic of eugenics, it also seemed completely “expected” in the sense that Emma has frequently written about similar issues regarding parenting and autism. In many of her previous writings on the subject, Emma has sought to ease the fears of parents after their children are diagnosed with autism. With this conversation, it becomes more clear as to why she feels so highly motivated to show parents that an autistic mind is a wonderful mind and the prospect of having an autistic child could just as easily be looked upon as a “blessing” rather than a “curse.”

It is literally a matter of life and death.

I have no doubt whatsoever that tests will be created that can determine (with at least a reasonable amount of certainty) whether an embryo will develop autistic (or autistic-like) neurology. Having just returned from a weeklong conference on neurology and consciousness studies, where I listened to over 100 lectures by the top scientists in the field, I also have no doubt whatsoever that such a test will likely be developed within the next five years. The technological advances in this area are occurring at such an exponentially swift rate that it would be ten times more shocking if the “autism test” were NOT developed.

I have equal certainty that once a test like this is developed (particularly if it is a non-invasive blood test, which is also highly likely) that the results will be horrifyingly similar to what has occurred when fetuses test positive for Down Syndrome (DS) — a 90% abortion rate.

If you’ve ever spent a decent amount of time with a person with Down Syndrome, and you’re a reasonably intelligent, kind and compassionate person, you fully understand what a horrific disaster this is. When the “autism-test” becomes available–and it will–an equal disaster will likely occur, if we don’t effectively get the word out that autism is not to be feared, but should instead be embraced.

Here is a good article I just found on the topic and points the way to a more organized manner to produce and publicize an awareness campaign to counter the eugenics tragedy, in the absence of a more positive attitude toward autism and autistic people.

Very unfortunately, we live in an increasingly perfectionist society, particularly in America. Any American woman knows how difficult life became for her as a little girl, once she became aware of what society deemed: “the ideal woman.” Now little boys have to push the same boulder up the same hill, trying to get a stud-muffin six-pack hot-bod. Just look at the cover of any magazine that features any human being that is not part of a straight-news story.

It’s hard to be optimistic about the outcome regarding eugenics. People, being people, want the “best for their children.” And the “best” that’s being shoved down people’s throats is an impossible ideal. So wanting the “best for their children” often translates into wanting the “best children.” Depending on your cultural affiliation, the “best children” might mean tall, slim, blond hair and blue eyes. Or it might be highly intelligent, hard-working, caring, athletic, wealthy, powerful, dominant, sexy, persuasive, cunning or ruthless.

Perhaps all those traits will become “genetically selectable.” Will parents do it? Absolutely. How many? Lots. Will laws be imposed to stop them? Perhaps. Will those laws be broken? Absolutely. The big questions aren’t: “if” or “should you?” They are: “when” and “how much?” And with Autism Speaks sucking up 80% of the public discourse bandwidth, the generally accepted definition of “best children” continues to be: “children who are not-autistic.”

It’s hard to be optimistic about anything anymore. Like whether your children will ever see a living coral reef. But if you care, you have to try, and we really have to try very hard, and very quickly if there is any chance at all of turning the tide.

Emma’s Hope Book began as a search for “hope” in “helping” Emma to be a less-autistic person. It’s shameful for me to write that, but it’s the truth. Thanks to Ariane’s tireless quest to learn more about autism, she discovered the blogs of autistic people and suddenly our perspective shifted completely. Now Emma’s Hope Book is about hope with a capital H, not in air-quotes. It’s about the Hope of understanding and acceptance and respect and basic human rights. It’s about the Hope of reaching parents with children who are newly diagnosed with the “disease” or “disorder” of autism and suggesting an alternative perspective, so they may embrace and treasure the gift they’ve been given–and prevent the countless trauma-inflicting mistakes we made while we listened to the “Cure Autism Now!’ crew. It’s about the Hope of reaching the parents of autistic children who have already made many of the mistakes we’ve made and show them the power and beauty and wonder and joy of true acceptance–of learning that it is never too late to change–of learning that every day and every moment of every day counts.

Most importantly, Emma’s Hope Book is about the Hope of changing the world one person at a time through the kindness, compassion, joy, creativity, intelligence, insight and wisdom of Emma and all the autistic people like her (and unlike her) who share their thoughts, feelings, fears and hope with anyone who is willing to open their minds and listen:

“Know our understanding of what’s ideal constantly changes. Ideally one understands: to want a child is a desire without promise for sameness.” — Emma Zurcher-Long

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The Gift of Emma

In the days leading up to Christmas, Ariane excitedly told me that Emma had written, “I want to write a story about Daddy.” Ariane said it was going to be my Christmas present. Obviously, I was incredibly excited as well. But on the following day Ariane came to me after her writing session with Emma and said:

“This story is going to make you cry.”

On Christmas morning, when I untied the bow around the paper Ariane had rolled up, I braced myself. The story was indeed sad, yet hopeful, wonderful and important, like all of Emma’s stories. It was also very private, and so, days later, I still hadn’t asked Emma if I could/should publish it. Ariane asked her today and Emma said she didn’t want the entire story published, but it was okay to post this section:

“One day there was a man and woman who fell in love.  They eventually had two children, one son and one daughter.  They were very happy.  The daughter was distinctly different, but meant well.  She did not understand many of the ways of her family.

“Her father told her that she was kind and smart.  She ran away because no one believed her to be clever, even though her parents did.  Her father wanted many to realize how smart she really was.  So he told others “do not treat my daughter like a baby.”  People did not listen.

“His daughter was sad, but her parents believed in her, and that mattered more.  She was the luckiest girl in the world.”

I’m so glad Emma feels this way. I wish she were even “luckier” and we had known all these things about her many years ago. I do truly believe that I am the luckiest dad in the world. Like Emma, I feel incredibly sad that I underestimated Emma for so long, that I was so utterly clueless to this entirely different aspect of her, that I could not see and appreciate. But I feel so blessed today to hear and see all these amazing parts of Emma I had never understood.

“Better late than never” is an apt phrase to convey both the joy and sorrow I feel, now that I’m aware of what is certainly only a small fraction of Emma’s talents, feelings, insights, intelligence and her poetic soul. It is also an apt phrase to convey the necessity of getting this message out to the world, something that Emma and Ariane, and so many other autistic people and their families and friends have been struggling so hard to do for so long, in the face of an Everest-sized mountain of misinformation from so-called “autism experts.” The most heinous sub(human) class of these is the “debunking” posse, who seem to spend every waking moment of their lives trying to discredit any assisted communication methods for autistic people. Yet no matter how hard they try, and they do try really hard–they will never succeed in keeping these blindingly brilliant autistic minds imprisoned by their willful and malicious ignorance.

The three best gifts I’ve ever been blessed with are my wife Ariane (who I met at a party on Christmas day 15 years ago!), and my wonderful children, Nicholas (age 13), and Emma (who turns 12 in January).

Emma is such a wonderful gift in so many ways. I could write another (even longer) post just listing all the amazing blessings she has brought to me and our family. But I’ll simply conclude by repeating one of the sections of her story that Emma agreed to publish, because it’s the kind of “better late than never” message so many more people need to hear:

“Her father wanted many to realize how smart she really was.  So he told others ‘do not treat my daughter like a baby.’  People did not listen.”

Maybe they are listening now, Emma. Maybe more and more people will hear your voice and the voices of your autistic brothers and sisters. Maybe all these people will someday be lucky enough to experience the gift of Emma.

Emma showing off her new red beret and her new art work (a collage of relatives).

Emma showing off her new red beret and her new art work (a collage of relatives).

 

“Music is Stars for your Ears”

Profound. Poetic. Always unexpected. When Emma writes (in this case she was typing), she is able to express herself in a way that she isn’t able to with speech yet. But what she has to say is always (to me at least) profound, poetic and unexpected.

Take that above line for example. As she slowly typed, letter by letter and got to this point: “Music is star…” I wondered, where is she going with this? And no matter how many times I witness her write, I never cease to marvel at what she ends up saying.

It’s Richard here. Ariane has been traveling for the last two weeks doing her Holiday Trunk Show in Chicago and for the last day today in Aspen. She hates it. She is an incredibly talented, award-winning jewelry designer. Just take a look here and see for yourself. She began designing jewelry after some prodding from me because she had become so obsessed with autism and (many years ago) with finding a cure, that she was stressed out to the snapping point.

Ariane went to school for fashion design with a bunch of today’s top name luxury designers–an exclusive class at an exclusive school. But she hated the fashion world. I suggested that she channel all that talent and creativity in a different direction, so she wasn’t spending every waking moment of her life reading books about autism and searching the Internet for the latest studies and therapies and anything else under the sun she could discover about autism. That inexhaustible search led her to discover the blogs of autistic adults, films like Wretches and Jabberers, Supported Typing, Soma’s RPM, the Intense World Theory, and a hundred other things that have completely transformed our family in the most wonderful way possible. And by sharing her/our journey on this blog, I believe she is making the world a better place, day by day.

Ariane would never make such claims about herself. I’m happy to. She invited me to write a guest blog today while she is doing her trunk show. I’m certain she thought it would be all about Emma, but “heh heh” as Ibby would say.

If Ariane had a partner that handled the business side and left her free to simply design jewelry, she’d probably still be having fun with it. But these trunk shows are definitely a drag. I know for certain that she would much rather spend the day writing a blog post, replying to comments, working on one of the books she’s writing about her/our journey, reading more books and articles, chatting with her friends, getting a manicure–basically anything other than sitting around in a hotel room, waiting/hoping for people to stop in and buy some of her amazing designs so she doesn’t hate being there even more. So if you’re in Aspen, stop in and say “hi!” Oh, and bring your wallet. If you’re not in Aspen and love jewelry, or just love Ariane, send her a note, or a message or call, or Skype–or buy some jewelry after browsing on her website. She would never say such things here, or anywhere but once again “heh heh.”  I, for better or worse, am and shall always be: The King of Bluntness.

Now, after that shameless plug, let me talk about the session I had with Emma and “B”, who helps with Emma’s written communication, using Soma’s RPM method. Yesterday was a milestone because Emma used a keyboard throughout the entire 45 minute session, instead of the stencil board or letter board she usually uses. This was clearly a stressful adjustment for Emma, but she soldiered on bravely, and as usual, wrote some amazing things. Profound. Poetic. Always unexpected.

Rather than editorialize, I’m going to relate the entire session, using B: and E: for Emma. Some of B’s statements are paraphrased. All of Emma’s responses are exactly what she wrote, because the keyboard was connected to an iPad and it was all recorded.

B: What history topics are you interested in?

E: music, history, country, the world, the playground

B: Tell me something about music.

E: Music is stars for your ears.

B: (B gives a lesson about the origin of blues music with slavery) What kind of music are we talking about?

E: blues

B: Tell me something about our country in the 19th century as opposed to the 20th century.

E: there were slaves

B: What can you say about freedom?

E: less freedom when you are someones slave.

B: What do you think singing (the blues) did for them (slaves)?

E: how about it helped the crops grow.

(There was an interesting blurt Emma did here: “You left him there to die!” from her favorite movie Two-Headed Shark Attack. It speaks to me of injustice, self-interest and the horrifying results)

B and Emma then did some “Call and Response” blues-style singing together.

B:  What would you say about that?

E: when you call your friend they should not ignore you.

B: Can you come up with a call and response song?

E: I like to eat cake

the sweet is so nice

They sang these verses together a few times (ultra-sweet!).

B: Where in the country does the blues come from?

E: south

B: Do you have something to say about this?

E: there is fun music in the north also.

B: (B plays a video of BB King singing “Stormy Monday”) What do you think about that?

E: stormy tuesday it was. (the previous day was Tuesday and it was stormy).

B: (B tells a story about a teenage boy who was lost and later found by a homeless man who called the police and contacted his mother. The mom was very grateful and rewarded him.)

B: What did I say about the man?

E: homeless.

B: The mom was grateful. Why?

E: he found the son.

B: Years later there was a news article about the man whose name was Leo. Another man named Patrick used to pass Leo every day on the way to work. They began chatting. One day Patrick gave Leo an offer and he had two choices:

1. $100

2. A laptop, lessons everyday for an hour in computer coding.

(Leo took door #2, and in the article Leo coded an app later.)

B: What was one of the options?

E:  money

B: What do you think about the story of Leo getting lessons and coding the app?

E: he needed to get rewarded.

B: Any message for the world about anything?

E: hearing my response to your call is like being at a fun amusement park.

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And being present for all of this was like being in a fun amusement park too.

“Music is Stars for the Ears.”

Yes, it certainly is Emma. It certainly is.

Happy holidays to all! See you Saturday Ariane. Emma and Nic are counting the days and so am I!