The Family Room

Claire Danes as Temple Grandin? Really? [Yes. Really.]

 Not long ago I met a woman named Jovana Grbic, a biological chemist who has a cool little side-business consulting on science for the film industry. (You know: is it really possible for a volcano to engulf New York City? Could dinosaurs be cloned and raised as pets...and engulf New York City?) She invited me to do a guest post the next time a film about autism was released (possibly to stop my endless ranting), so I asked if I could take a look at Temple Grandin when I heard it was being released on HBO.

"Claire Danes?" I thought. "Really?"  

Yes, really. It's a treat, this film.  And not because it's perfect. (So few of us are). But because it tries to give us an inside-out view, something that I and so many of my friends have so desperately wanted.  It was produced by Emily Gerson Saines, herself the mother of a boy with autism, so it is full of a personal passion to get it right. 

Here's the review. You can find the film on HBO starting tonight.

Can Magic Help Us Understand Autism?

For those of you who don't know, I work with news media in my regular job, so I have a pretty good sense of how stories are shaped, from initial idea to final result. And because I am very concerned with the way autism is portrayed in said media (can you hear me, Autism Speaks?) I try to offer some POV when asked (okay, even when not asked :-) So I was happy to speak with Susan Donaldson James of ABC News about a research study conducted at the Barrow Neurological Institute in Phoenix, Arizona. 

The study is concerned with the joint attention of people with autism, and uses magic (yes, magic!) as a way to better understand how people with autism perceive situations differently from us neurotypicals. Is it true that people with autism can't be fooled by magic tricks?  Read the article and see what you think.

My role in the piece, entitled Autism Study Could Find Answers in Magic, was as the "balance"; I honestly don't know enough about the study or about neuroscience--let's be frank--to draw an intelligent conclusion about its results. But what mattered to me was that this piece not go down the path of so many that portray people with autism as cold, robotic, and, unfailingly, "locked inside a world of their own." 

Those stories tend to negate the humanity of people with autism--a spectrum as wide as the Montana sky--and, I fear, terrify parents, especially the ones with new diagnoses, at a time when they are most vulnerable. And it's important to remember that communication is a two-way street: just because people with autism may be looking in a different direction or have a different expression from what we would deem "appropriate" in a particular situation, that doesn't mean they lack feeling or a sense of mutuality with us.  They just may process and express those feelings differently. 

So I was thrilled to see Ms. James seek out a broader perspective, interviewing an adult with autism about his experience of the world, and did what I could to offer a parent's perspective. 

As always, I'd love your thoughts.

Bumping into ‘NO”: Managing Tantrums in Kids on the Spectrum

By Lisa deFaria, LCSW, BCD, Faculty, ICDL (Interdisciplinary Council on Developmental and Learning Disorders)

Susan’s note: Lisa originally posted an earlier version of this on the Yahoo Floortime board. I thought it was so timely and helpful that I asked if she would be willing to let me share it with you all, and, lucky for us, she did.

As our children move forward developmentally, "typical" phases that were previously delayed may emerge. One example is the (so-called) "terrible twos." Many kids on the autism spectrum never had the "terrible twos," a time when children become more engaged in their world, with new-found communication, mobility and intentions ("I want”/”Me do it...")

So when parents start reporting to me that their child is tantruming and oppositional and won't do what they say, I say "great!” The child has moved beyond the earlier, more disconnected, passive or self-absorbed phase and demonstrated that he is "cooking." It's when a child doesn't move to this phase that I am concerned.

Of course, with these changes, the child is, perhaps for the first time, bumping into "NO."

Now we have a new set of challenges--not bad, just different. As your child moves forward into this phase, he is also much more aware of the complexities of his environment, the expectations of others, the world moving too fast, too loud, too bright around him. Though he now understands far more language, he may be slow to process it, and many adults forget that the child can't take in a wall of words.

Motor planning, still often immature, becomes frustrating for your child, for how exactly is little Johnny going to get from here to there? A profound desire to be "in control" kicks in, as though saying, "Wait a minute! Slow down!!!" So many kids in this situation need to put their brakes on and try to hold onto control, particularly during transitions (into the car, into bed, out the door, TV off...).

Sensory issues may also be involved. "No" for our children is a bit of a different experience than it is for a typically developing child. With awareness and engagement with their environment, often more sensory issues emerge during this phase. This can create a very challenging pattern of behaviors--look at how many transitions occur in any given day!

A child at this phase needs a lot of transactional support to help ease his movement through the day. You have to experiment with what will work.

Drifting along with the tumbling tumbleweeds

A long, spiky week full of highs and lows, crackle in the air like high desert, a dry lonely wind, and nary a post in sight.

Hi.

I do this sometimes, you know, in my so-called "regular" life. I go underground and need to, I don't know, disappear, get some perspective, hibernate. Or it's just hectic, or I feel guilty for writing about Isaac when I could be playing with him, or hanging with J., or, as is most often the case lately, trying to catch up on my sleep.

Tonight I saw the head of Isaac's school at a meeting, and she offhandedly commented that this time of year you see a lot of tantrums and a lot of behavioral leaps from the kids. Why didn't I know this, I wondered, as I recalled last Friday's nuclear meltdown: an hour in front of the dry cleaner's as Isaac refused to go to school, followed by another forty minutes as he howled and wailed and fell to the street.

I was good. I was patient. I was a model mom. I ignored the stink-eye from passersby, sure that I was doing some horrible bad mom thing that had clearly come home to roost. Or maybe I was just imagining it, because I'm a little oversensitive that way.

I knelt down in front of Isaac, took his face in my hands. "Isaac," I said, "You are a big boy. You know you need to go to school. Then Daddy will pick you up and you can ride the elevators with him later."

"I want to go on the elevator NOW!!!" he wailed, his body a ball of tensed, vibrating muscle.

"Sweetie, I know you are upset and want to go on the elevator now. But it's a school day."

"It's an ELEVATOR day!!!"

"You can do this," I responded, my voice a soft whisper in his ear, urging him to listen to my tone, if not my words.

"I CANNOT!!! I CAN'T!!!" he wailed.

I felt hot tears spring to my eyes. Don't overthink this, I thought. Just...don't. But I couldn't push it from my mind. He's never said that before. And I wondered whether he's formulated this thought to himself before: I can't do this.

It broke my heart.

Later, after I had severely compromised my "model mom" status with some ill-timed yelling and at least one involuntary F-bomb (ugh!), I finally got him through the school door and, urged by the teachers, left. My clothes in a sweat-soaked mess, my hair blown wild by the wind, I sat in my car and just listened for a moment to the blood pulse-pounding in my ears.

Don't overthink this, I thought. It's just a tantrum. It's not prophecy. It's not Shakespearean foreshadowing of some horrible thing that will happen in Act III, just as we're thinking we're out of the woods. Know it for what it is: a very overwhelmed, very angry, very frustrated four-year-old boy.

But I couldn't shake it. Not then.

An hour or so later, my phone rang. "He's fine now. He's having milk and cookies in the kitchen, and he's telling us that he's sad that you said goodbye, but that Daddy will pick him up later."

I think he bounced back faster than I did, the little stinker.

*
I don't know about you, but I don't think I can take any more studies revealing that maternal mental illness, vaccines, television, cell phones, or, who knows, hearing the collected works of Andrew Lloyd Webber in utero (though that last wouldn't surprise me) causes autism. I just can't. Can we call a truce for a while? Please?

In the meantime, I think I just need to read Emily every time a new study comes out, so I can be sure my science comes pre-analyzed and pre-debunked by a trusted source.

[Oh, and random factoid: a casual Google search tonight of the terms "autism cause" returned a mere 619,000 entries, dwarfed by the whopping 112,000,000 returned for a search of "Britney Spears." So don't even begin to tell me what that says about our culture's priorities.]

*
Finally, and without too many details, we had our very first actually successful playdate yesterday, by which I mean that Isaac met a new child and new parents in a new house, played with the boy (a little), laughed with him and seemed to enjoy himself--for quite a sustained period. It helped that the parents were delightful, the boy was gentle and tolerant and funny and sweet, he had exciting toys, and there were plenty of opportunities for breaks when Isaac needed them. We were genuinely sorry to leave, and Isaac remarked in his bath last night that he wanted to go back to their house. As did we.

Wow. Don't want to jinx it, but it seems...promising.

Please be patient with me. I'll try to keep the tumbleweed to a minimum this week.

Navigating Negative Emotions (Part One)

By Jordan Sadler, SLP

My 4-year old client threw himself on the floor and cried when sharp adult scissors were taken away from him, but wailed, "I'm happy, I'm happy..."

A 5-year old girl grabbed something from me and then immediately socked me in the nose when she saw my sad facial expression.

Another young boy, startled when his little sister cried, insisted to me, "Abby's happy.  She's not sad!  She's happy!"

****

Susan recently proposed a topic that has been on my professional radar a great deal lately.  That is, why is it that some children want everyone to be happy at all times, and how can we help them process and accept negative emotions better?

I think there are probably quite a few opinions out there explaining why this is.  Last week I had the great fortune of having meetings with two colleagues - first I met with Liesl Wenzke Hartmann, SLP of Communication Therapy in San Francisco, and then with Emily Rubin, SLP, one of the creators of the SCERTS Model, a comprehensive educational program for children with autistic spectrum disorders.  I wanted to hear what each of them thinks this is all about, and their answers made good sense so I will try to summarize our conversations for you.

One of the core deficits in autism is difficulty in predicting social behavior in others.  To borrow a statement straight out of a SCERTS workshop hand-out, "Individuals with ASD have neurological differences that impact their ability to predict the intentions of others, comprehend social cues and share their intentions with others."

A developmentally young child with ASD who has difficulty predicting the intentions of others will have a very hard time knowing what is going to happen to him next, even when his communication partners think that they are making it very clear (e.g., putting on jackets and shoes, getting the car keys, saying, "Let's go to Target!").  The child is then picked up "out of the blue" from an enjoyable activity at home by his loving parents and taken outside where he is strapped into his car seat or stroller and perhaps brought to a noisy store or play group.  This can be confusing and dysregulating, which in turn has the potential to make a "simple outing" a great challenge to parents again and again.  Tension builds in the family's day-to-day life as everything starts to feel like a battle. 

In addition, the child may see absolutely no logic behind someone else's emotional reaction.  His sister, from his perspective, quite often begins to tantrum out of nowhere, which is very startling and - again - dysregulating.  If a child does not see it coming, because he has trouble reading social cues, he has no opportunity to initiate soothing strategies such as moving closer to Mom, covering his ears, or leaving the room to find his sippy cup before the tantrum escalates. The world becomes an unpredictable, often frightening, and stressful place.

No matter what the particular situations are, this child is developing what the SCERTS collaborators call negative emotional memory around a great many things; things as simple as Mom getting her keys or his sister starting to cry.  He has not yet had enough opportunities to:  a) predict the occurrence of something challenging, b) use coping strategies for self-regulation, or c) learn over time that he can make his way through these difficult feelings without becoming dysregulated.  Therefore, he experiences negative emotions but doesn't really connect meaning to them, becoming dysregulated immediately when he feels them.  And, when he has enough language to do so, may try to deny them out of fear. 

Put another way, in the words of the SCERTS folks, "When a child is not able to predict the actions of others and has limited history of positive emotional experiences in social interactions, social experiences become threatening, anxiety provoking, and worthy of avoidance."

****

Let's face it.  As a society, we are very uncomfortable with negative emotions.  Adults so often say to a child, "Come on now, don't cry about that!" or "There's no reason to be so mad," or "That's a silly thing to be sad about!"  We tend to try to safeguard young people from those challenging emotions, especially our children with special needs, figuring they've got enough to deal with already. But the hard truth is that we must all learn to predict, cope with, and succeed in moving through negative emotions in order to feel comfortable with them and continue on our way up the developmental ladder.

[Part Two will address how to help guide children through this process.]

Today's Man: PBS Documentary on Asperger's

My fellow Babycenter blogger Kim Moldofsky posted a great piece the other day on a documentary that will be showing on PBS tomorrow night.  It's called Today's Man, and it chronicles Nicky Gottlieb, a 21-year-old with Asperger's.  The coolest part?  It was made by Nicky's sister Lizzie.  And here we have the intersection of two wonderful trends: siblings who take an active role in educating the world about their brothers and sisters, and a new, honest crop (okay, croplet) of movies about people on the spectrum.  I'll plan to watch and let you know my Deep Thoughts.

Check your local PBS listings.  Meantime, thanks to Kim for the tip!

What Were They Thinking?

The NYU Child Study Center, I mean.  I wrote about it on Babycenter.  You can read the post, and imagine the full extent of my outrage, here.

What were they thinking?

Communication Skills: Slow to Develop or Delayed?

By Jordan Sadler, SLP

New parents look forward to their child’s first words with great anticipation.  We want to hear that cute little voice, and start to understand better what our child is thinking about.  We dream about how easy parenting will be when our child is able to tell us what he wants with words rather than cries.

But what does it mean when the child in your life is the last one in the playgroup to utter those first words?  What if you are the only one who understands those first words?  What if he starts to stutter all of a sudden at age 3?  And what about that 1st grader who is still lisping? When is it normal and when does it require remediation?  How do we know when we should become more concerned?

“Einstein didn’t talk until he was four,” well-meaning people are fond of saying.  Then there’s the other playground stand-by, “He’s a boy--boys are slower than girls to talk.”  And finally we have the pediatrician’s response, “Let’s just wait and see,” which does many children a huge disservice because it delays critical early intervention so often.

So how do we know? 

No Restroom for the Weary

Today was one of those days that felt like transition after transition, interspersed with brief moments of calm. It was probably that Isaac isn't feeling 100 percent yet after a week-long bout with some sort of respiratory virus. And when he's tired, he's edgy. And when he's edgy, he refuses to go to the potty. And when that happens, everything goes sideways.

Today we decided to escape the city and drive about an hour south for a little fresh air. We had lunch at the Palo Alto Creamery, a venerable institution serving burgers and fries to Silicon Valley residents for, well, a very long time. And, voila, refusal to go after. Loud refusal. Attention-grabbing refusal. "Why-don't-we-leave-and-try-later?" refusal.

So, okay, fine, we're trying not to make a tug-of-war out of this. For one thing, it's no fun. For another, it's way too Freudian. So we gave up and took a walk outside, where we passed Waterworks, an incredibly elegant and expensive store selling, what else--incredibly elegant and expensive bathroom fixtures. Isaac nearly yanked my arm off in his excitement, so in we went. We walked past model after gorgeous model of bathrooms that I could spend a lifetime in: huge, cozy ceramic tubs, sculpted sinks, plush towels, gorgeous tile, and yes--the finest in lavatory design.

Immediately it became evident that Isaac thought these floor models were there for his personal use. Luckily, I thought fast. "Isaac, these potties don't really work. They're just, uh, pretend." (As the absurdity of that remark hit me, I realized that it was now inevitable: I was destined to blog about this. How meta is that?) We dashed to the counter and in my most charming harried mother voice, I asked if we could use their facilities. The woman behind the counter glanced at me, glanced down at Isaac, and suggested we try across the street at the Creamery--the very bathroom Isaac had just loudly rejected out of hand.

Crap.

Isaac looked a bit more urgent now, and yanked me back to the floor models for another try. On the way, we ran into another saleswoman, who asked if we needed any help. "Um yes," I asked, all harried mommy charm again, "Do you happen to have a public restroom?" (Pleading look at child). "Certainly," she said crisply and led us to the back, where, sure enough, there was a sparkling-clean, quiet-yet-understated restroom. Mission accomplished.

On the way out the door, Isaac glanced back into the store window. "Lots of potties!" he exclaimed, grinning at us.

Book Review - Look Me in the Eye: My Life with Asperger's

by Jordan Sadler, SLP

John Elder Robison has just had a wonderful book published.  Mr. Robison lives in western Massachusetts with his wife and teenage son; he runs a successful company, repairing and restoring fine European automobiles.  Mr. Robison also happens to have Asperger's. 

For much of the book, this is the way the story plays out - the fact that Mr. Robison has Asperger's takes a back seat to his fascinating life story.  Despite many roadblocks - some of them enormous, such as his mother's mental health challenges and his father's alcoholism - "Look Me in the Eye" ultimately reads as a success story. 

Mr. Robison was blessed with a very high level of intelligence, but what he makes clear in his book is that he was unhappy for many years.  It was a long time before he found a job that fit his abilities, and his first marriage did not last. Asperger's was not an identified diagnosis when this author was a child, and none of the professionals he worked with understood his unique set of characteristics. That is, until a close friend bravely handed him Tony Attwood's book, "Asperger's Syndrome" (the link is for the current edition of this book), noting that the characteristics outlined in the book fit Mr. Robison perfectly.  At age forty, Mr. Robison agreed.

The author explains the enormous shift in his understanding of himself upon reading Mr. Attwood's book and the impact this had on his entire life.  The last few chapters were particularly insightful, chronicling the years after diagnosis and the ways in which Mr. Robison processes thoughts and emotions.

As a therapist I found this book to be immensely interesting.  It is a rare gift to hear from this fifty-year old man exactly what he wishes he'd known about himself as a child, how his logical brain works, and what kinds of skills he would have liked to have been taught.  Here are some of the highlights:

• Making eye contact with others has been difficult for him for most of his life and when he is looking at someone, he is "unable to form words".  Later in life, he taught himself to glance at the eyes of a conversational partner to check in, but mainly looks away.  This fundamental challenge led others to describe him as "hiding something", a "criminal", a "sociopath", and a "psycho", beginning at a young age.  He states, "I came to believe what people said about me, because so many said the same thing, and the realization that I was defective hurt.  I became shyer, more withdrawn."
• There is an account of a simple conversation with a good friend, in which the author details his internal dialogue and the difficulty he frequently has in knowing what the expected, socially appropriate response is.  He notes, "It's clear to me that regular people have conversational capabilities far beyond mine, and their responses often have nothing at all to do with logic.  I suspect normal people are hardwired to develop the ability to read social cues in a way that I am not."
• The author makes a fascinating argument that as he gained "greater insight into [his] emotional life", his logical thought processes took a nosedive; he states that when he looks at the complex electrical circuits he designed when he was younger, he is no longer able to understand them.  I was glad to hear the author state clearly that he feels this was a worthwhile trade.
• Mr. Robison makes it very clear that doctors who describe children with autism and Asperger's as "preferring to play alone" (which we hear all the time), are "dead wrong".  He writes, "I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life."
• The author described the ways in which his wife helps him with his sensory processing challenges (e.g., sleeping "in a pile" with him, petting him when he gets jumpy), and how she deals with his anxieties.  One of my favorite sections on his marriage was his extremely analytical dissection of choosing a mate; he wonders if he got the "best sister" (his wife has two sisters, or "units", as he calls them), and likens this to a man wondering for years after buying a new car if he chose the best model.  Although he has heard the reactions of his neurotypical friends, he is unable to relate to their arguments because his mind works in such a strictly logical manner.

This book is a treasure for people with Asperger's as well as their families, friends, and the professionals who work with them, but it is also a very interesting book for anyone interested in human interaction and psychology.  It deserves a special place on the bookshelf right next to Temple Grandin and Daniel Tammet.