Tag Archives: autistic behavior

Advice for Parents With a Newly-Diagnosed Autistic Child – By Rina

Posted on November 11, 2014 by | 17 comments

The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic.  Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission.  Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child.

Rina told me she self-diagnosed early in 2007 after reading “The Curious Incident of the Dog in the Night-Time and was formally diagnosed in 2009.  Rina wrote, “…knowing this about myself has been the revelation of my life. I am exponentially happier, healthier, and more confident since learning this about myself. Now I understand myself!” A little later as we were discussing this post, Rina said, “I was over 40 when I discovered I was autistic, so I spent a large part of my life just thinking I was broken, weird, wrong…” Then she wrote,  “I was bullied terribly in public school, like most of our tribe, it demolished my self-esteem, I was depressed and suicidal…but not now. I am autistic and proud, awesome and I know it!”

I read Rina’s advice to parents to Emma before posting here.  Emma typed, “It nicely states what is important.”  So with that endorsement, here you go and thank you Rina for allowing me to reprint your words.

“You know what? I have lots of thoughts, and I’ve had them for a while, about what I’d like to tell parents of newly-diagnosed autistic children. Maybe I’m talking out of my ass. But this is what I’d tell them. (assuming a boy in this example, for ease of writing…)

Your child is autistic. His brain is wired differently than yours. Autism is a disability. He will have challenges, but with the proper supports, he will have a happy, healthy, fulfilling life.

He will follow his own developmental schedule. Ignore the usual “markers”. Throw them out the window. They will be of no use to you.

Try to remember, always, that your son is experiencing the world in far more detail, and with far more intensity, than you are. It will take a lot of time for him to learn to regulate sensory input. His experience of the world (meaning sights, smells, sounds, peoples’ energy, conversation, others’ expectations of him) will overwhelm him on a daily basis. Have compassion for your son. He will be unlike any other child, even any other autistic child. If you pay close attention, with a compassionate open mind, he will tell you what he needs.

There are four things that can be of most help to your son, especially while he is very young: quiet, calm, consistency, and comfort. More than any recommended (and expensive) therapies, these will be of most help to your son. He may have repetitive and/or sensory-rich behaviors, such as rocking, squeezing a favorite toy, repeating favorite words–these help him to find some order in the chaos of the world–if they do not harm him or others, please allow him these behaviors, no questions asked. If they embarrass you–well, quite honestly, that’s your problem and you need to find a way to deal with it.

If your son is nonverbal or semi-verbal, trust me that he is looking for ways to communicate with you. Behavior *is* communication. If there is behavior that upsets you, that seems tantrum-like, there are probably reasons in the environment, there are things that are causing your son pain–again: try to make his world quiet, calm, consistent, and comfortable.

Consistency: I cannot emphasize how important this is. If days cannot be consistent, give your son warning whenever something unexpected is going to happen. I am an adult, and it is still one of my stated accommodations that I need a head’s up whenever something new comes along, or I need a break so I can process the change. If you’re planning to take him along to his sibling’s baseball practice, to stop by a friend’s house, to go to a yard sale, whatever…plan in advance, tell him about it, tell him what to expect and how long it will last. You know what, I think this is common courtesy. Understand what your son needs and be courteous by giving it to him!”

compassion-energy

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“Social Impairment”

Posted on March 19, 2014 by | 12 comments

“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics.  As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely  masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation.  The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I  was filled with admiration.  Self care is such a wonderful way to describe what I see her doing.  Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others.  This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all.  To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do.  (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy.  It isn’t a social impairment.  It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic.  My daughter does not lack a desire for friendship or have a disinterest in other people.   Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues.  Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise.   But when we were given Emma’s diagnosis, I did not question these various theories.  I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

Oh how wrong I was…

Emma holding Teddy

Emma holding Teddy With her String

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Teaching a Name

Posted on February 9, 2012 by | 3 comments

When Emma was a year old, in a moment of impatience we bought her a baby doll for Christmas.  Despite the fact she showed no interest in dolls of any kind, despite the fact she showed little interest in any of the toys we tried to entice her with.  Emma was much more of a doer than a child who sat happily playing with a toy.  This was a kid who liked to move.  Take her to the playground and she made the other kids look lethargic.  I admit, I took a certain degree of pride in her rejection of all toys and her desire to move and run and slide instead.  Emma’s disinterest reminded me of my father who shunned all holidays, grousing that they no longer celebrated what they were intended to, but instead fed the insatiable Hallmark Greeting Card’s appetite for cheap sentimentality and  had become a financial boon for ad agencies.  His grumpiness about it all, increased with his age.   Emma’s resolute rejection of all toys, her disinterest in videos, movies, and anything else that required her to sit still, would have made my father proud.

The baby doll we purchased was pudgy, with blonde pigtails, and came with a little toilet, hairbrush, mirror, bathrobe and towel.  All that was missing was a mani/pedi kit and perhaps some massage oil.  I bought a couple of little playsuits for the doll and wrapped everything up in pretty paper with a big satin ribbon.  We had to help Emma as she showed no enthusiasm in her gifts piled under the Christmas tree.  She begrudgingly humored us by tearing open the present, but showed no excitement, it was as though it were a chore,  something that was expected of her.  When she saw the baby doll, securely fastened in it’s box with a clear window so that she could see it, but not actually reach it, she lost all interest and wandered off.  “Emma, look!  It’s your very own baby doll!”  I exclaimed.  “What are you going to call her?”  Being ignored during those early years was something we had grown used to.  Still, I persisted, carrying the baby doll over to her, I said, “What’s her name?”  Emma refused to look at me or the baby doll.

Years later, during out DIR (Developmental, Individual Difference, Relationship-based Model, also known as floortime) phase, the baby doll, now joined by a number of other baby dolls, groovy girls, Jessy and Woody from the Toy Story, Tim Burton’s Corpse Bride, each one evidence of our ignorance and dogged determination to engage her in the world of make believe, lay untouched in a pink plastic bin near her bed.  In a moment of inspiration I yanked the baby doll from its bin and thrusting it in Emma’s face, asked, “Oh look Em!  What’s her name?”  Emma said nothing, but I persisted.  “What do you call her, Em?”  And then Emma spoke.  “Doll,” she said.  “Yes, but what will you call her?”  I was nothing, if not determined.  “Is her name, Tabitha or Katherine, Anastasia, Cynthia?  What’s her name, Em?”  The idea that naming something was not a concept Emma fully grasped, never occurred to me.  When Emma then repeated the names I was throwing out, I eventually gave up and as I was leaving, Emma said, simply, “Doll.”

And of course, she was right.  It was a doll.  To Emma that was all she was.  A doll.  For a child with little or no ability to understand the world of make believe, the idea of naming a doll, must have seemed bizarre.  Why would one do that?

Last weekend, at Barnes & Noble, I showed Emma a book called Biscuit, a beginning reader book.  Emma took the book from me, sat down on the carpet and pointed to the first word.  “Biscuit, that word says Biscuit.  That’s the dog’s name,” I said.  Emma nodded and continued to read the book, stumbling over a couple of unknown words, but for the most part being able to get through it with little help from me.  As I sat with her I remembered her baby doll and it occurred to me, she does not fully understand the concept of naming.  It is something I will attempt to teach her this weekend.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book.com

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Another Mom’s Comment

Posted on November 24, 2011 by | 1 comment

This comment from the “On Engagement” post was so beautiful I wanted to share it.  Her daughter is also named Emma.

“I love your Utopian world. I wish it existed. I avoid going to events sometimes because I just don’t want to have to have Emma deal with the looks, or me at times. Her tantrums are nothing like that of a two year old either. She is eight, and carrying an eight year old out of a store spitting and biting and screaming in a piercing , gut wrenching manner gets many looks. One time Emma lost it in a fabric store. I should have known better because it is overstimulating. She loves textures, but does horrible in overstimulating environments. Anyway, it ended abruptly when I had to take her screaming and kicking out of the store. I held onto her for dear life, wishing I had parked closer, hoping no one would see me. I almost accomplished this endeavor when a woman started approaching me as I was desperately getting Emma to buckle her seat belt. I was sure she was coming over to tell me what a horrible mom I was, how social services should be called on me because it felt so violent as I held onto Emma and I imagined it looked violent as well. But instead, she came over and asked if she could hug me. She told me her son was autistic and has been a participant in much worse tantrums and just wanted me to know I was loved. I felt an angel had been sent to me. What a world of difference it would make if people were less worried about judging others and more concerned about helping others. A smile to a parent that is in need can make such a difference. We are all mothers, or daughters, or fathers, or sons. That is something that binds us all. Why not honor that in our daily encounters and help a struggling parent, not shun her, and refrain from assuming.”

Happy Thanksgiving!

For more on autism and Emma’s journey through a childhood of it, go to:   www.Emma’s Hope Book.com

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Connection

Posted on November 23, 2011 by | Leave a comment

Yesterday I was shown a video of Emma with one of her classmates, Charlie.  Each year Emma has had someone she particularly likes.  Someone she will talk about and want to sit next to.  Last year it was an adorable little boy named Justus, the year before it was Ben.  This year it is Charlie.  Charlie doesn’t have much language, but they connect on another level.  In the video Emma and Charlie are hugging each other and Emma is doing something with him that I have only seen her do with her older brother, Nic.  She is running her fingers through his hair while laughing.  The two of them are so adorable with Charlie beaming and Emma laughing, the two of them hugging each other and then Emma puts her hands on his shoulders, while maintaining eye contact she bends from side to side and bops her head up and down.  Charlie follows her lead and they laugh while doing a kind of dance together; watching it made me cry.  Something so simple.  Something seemingly so small.  Two children laughing together.  Two children connecting with each other.  For me it was akin to receiving the Nobel Peace Prize.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

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Literacy, Diets, Progress

Posted on November 18, 2011 by | 5 comments

Dr. Marion Blank has written a terrific piece for the Huffington Post regarding the 60 minutes segment on APPs for autism and the current ways in which language is taught.  For anyone with even a passing interest in language or autism, I encourage the reading of it.

An update on Emma, her diet, her progress:

Emma ate about three tablespoons of chicken and brown rice two nights ago and tasted the pumpkin mousse I made.  I will attempt to make coconut milk whipped cream this evening in preparation for our Thanksgiving feast.  I want to have several things Emma might like, so I am planning to prepare Maple Syrup glazed Turkey, roasted carrots and sweet potatoes and some kind of desert she might enjoy (she didn’t love the pumpkin mousse or pumpkin scones, so I’ll try some other recipes) as well as things the rest of us will enjoy – we are having between 12 – 15 people, many of whom are bringing things!  I am thinking of writing a cookbook entitled All The Delicious Things I’ve Made That Emma Won’t Eat.

I worried the other day (someone pointed out that I am always worrying about something – I blame my mother for this – she is a known worrier, plus I’m a New Yorker so there’s no hope for me) that Emma is just as rigid now as she was before the diet.  Instead of only eating six things, all of which were dairy or wheat, she now eats six other things, but as Richard pointed out, at least they aren’t dairy and wheat.  I think my expectations were high (they tend to be) when we began the diet; I had read in many cases the child, once off dairy and wheat, expanded their diet dramatically.  Don’t get me wrong, it is wonderful to see Emma eating brown rice and roasted chicken.  In fact it’s a huge achievement on her part.  I’m taking a deep breath now and will bask in the glow of brown rice and chicken.

Okay.  Now that I am filled with gratitude, to continue –

To date we have seen no identifiable cognitive or behavioral progress as a result of this diet.  We see her doctor in another three weeks.  I am still hopeful we might see something by then.

We received a report from her school that Emma threw a chair across the room on at least two occasions and pulled one of the TAs hair.  Obviously this is not good news.

Another deep breath, focusing on the joys of brown rice and roasted chicken.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

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Bruno Bettelheim

Posted on November 16, 2011 by | 4 comments

Most of us have heard, and many may have even read, some of Bruno Bettelheim’s ideas and work.  For those of you unfamiliar – Bruno Bettelheim, born in Austria, came to some prominence when he became director of the Orthogenic School, in connection with the University of Chicago for children with a variety of emotional and neurological issues.  His book, The Empty Fortress was published in 1967; read by many and touted as the final word on autism and its cause – the aloof and emotionally withholding mother.  At the time, his views on the subject became widely known and the treatment for autism was to put the mother in psychoanalysis.  The belief that the mother, in her lack of love for her child, caused the child to withdraw from the world was adopted by many.  Bettelheim claimed a high success rate of children with autism in his school.  It was only until after his suicide that many of his former students came forward with harrowing tales of abuse.  Much of Bruno Bettelheim’s work and ideas have since fallen into question.  The concept of the “refrigerator mom,” something he was an advocate of, has proven to have no validity.

Last week I had a piece published in the Huffington Post – http://www.huffingtonpost.com/ariane-zurcher/children-with-autism_b_1080076.html – a woman, now in her nineties wrote to me about her experience of being the mother of a child with autism, diagnosed in 1961.  Rather than examine her child when she sought help, she was put into analysis and blamed for her child’s neurological issues.  She wrote a book, A Few Impertinent Questions, http://301­45.myautho­rsite.com/, that tells of her painful journey.  It is a powerful story.

As I read her book, I reflected on what we think we know now about autism and what will come to light in the future.  Fifty years from now how will we view what we think we know?  What ideas will seem almost comical because we will have learned so much more.  What therapies will have fallen out of favor?  What new therapies will have taken their place?  What will be proven and seem obvious in fifty or sixty years from now, but are not obvious to us now?  I, most likely, will not be around in another fifty years to know the answers to these questions, but I am sure much will be revealed.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

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Day 3

Posted on October 18, 2011 by | Leave a comment

I didn’t have time yesterday to go into Emma’s response to being told she could no longer have her usual breakfast of the past six years – cheerios with milk and 2 slices of whole wheat toast with butter and raspberry jam or her weekend breakfast of pancakes (mix from William’s & Sonoma) with chocolate chips.  Did I mention she cannot eat chocolate?

I had the foresight to put everything that she can no longer eat into bags, which I then hid or, if it was perishable, threw away.  Except that I forgot about her whole wheat bread.  Sunday morning – Day 1 – there it sat on the kitchen counter like a beacon calling lost ships to shore.  She figured out pretty quickly that things were not going to be “breakfast as usual” and went for the bread before I could grab it or her.  I then had to wrestle her to the ground, as she screamed and tore at my clothing like a rabid beast.  It’s tough to maintain ones composure in such circumstances.  When she realized I intended to throw the bread away, she screamed and clawed at it, eventually crumpling into a heap on the floor, sobbing.  “Nooooooooooo!  Please Mommy.  I want toast with raspberry jam!”

I offered her the granola, then some oatmeal, all of which she refused and finally sat with her as she wept.  I tried to hold her, but she pushed me away.  I know not to take Emma’s rejection of me personally, it’s one of the many things about her autism that has always baffled.  She has never derived any comfort or pleasure from being physically soothed when she was upset.  As a baby it seemed as though she were missing that most basic human instinct, seeking contact from another human being.  It was as though self preservation was not part of her makeup.

Yesterday there was no weeping, but she had a fever and runny nose.

“Classic junkie symptoms,” a recovered addict I know informed me, after I told him what we were doing.

“What do you mean?”

“When I was a junkie, I told my dealer, heroin was great for curing the common cold.  She laughed at me and said – no you idiot.  You’re jonesing.  That was my moment of realization.  I was hooked and I hadn’t known it until then.”

“So what are you saying?  You think this fever is withdrawal?”  I sat down, incredulous.

“Maybe.  Hey I’m just thinking out loud.  What do I know?”

Still his words have stuck with me.  Maybe it’s just a coincidence.  Maybe she has a cold.  Her throat is red and I don’t see how that can be from any kind of withdrawal.  Still it’s weird.  This morning she had a fever again and her “cold” or whatever this is doesn’t seem to be better.

She continues to refuse almost everything offered.  Making whimpering noises whenever I ask her to sit at the dining room table to eat with us.  Today she finally had a slice of ham, some green grapes and some sheep’s milk cheese.  It’s the most she’s eaten in two days!

For more on Emma’s journey through a childhood of autism, go to:   www.emmashopebook.com

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A Comment

Posted on October 13, 2011 by | 2 comments

A follower of this blog wrote the following response to yesterday’s post.  I posted it here as it beautifully sums up exactly what my husband, Richard and I also feel and why we work as hard as we do with Emma.

“I think maybe this is what most parents or carers of children with autism aspire to.  Not to extinguish quirks and unique personality traits, rather to help our children function in this world, to cope, to survive, to find happiness. It is not as simple as just accepting someone as being unique when they can’t go out in public without dropping to the ground and self harming over some issue or they can’t even attend to their own most basic needs when they  become distressed, when there is an unavoidable change in routine, when they cannot even travel safely in a car or bus ( we’ve been there believe me), when they have no way to communicate their needs or to even tell a parent they are in pain or scared or hungry, when they want to reach out to a friend, but don’t know how and so are left friendless, when they struggle to eat because the food repulses them, struggle to even hold a fork or use a knife. That is not something I will accept for my children. I want more for them than that. As a mother I have had to watch my children cry in pain and be unable to hold them in my arms and give them this most basic of comfort, rather being forced to witness their anguish and left helpless. These are things that need to be changed and worked on. If that is a “cure” bring it on I say.”

I have never met the woman who wrote this comment, but we have been corresponding now for awhile.  She has two children on the spectrum, each utterly unique.  Her comments are always thoughtful and insightful.  Though we live on separate continents with several oceans between us, we have a great deal in common.  So, to you Liz – thank you for blazing a trail and sharing about it.  You have helped me more than you can know.

For more on autism and my daughter, Emma’s journey through it, go to:  www.EmmasHopeBook.com

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Em’s Airplane

Posted on September 28, 2011 by | Leave a comment

Yesterday Eddie (UPS man) delivered a package.  Emma took the box and began decorating the inside with stickers.  She then drew circles around each sticker.

With a different colored marker she drew a larger circle in the middle of one end, just underneath the circled stickers.

When I got home last night Richard said, “Did you see what Emma did?”

“Yes,” I said, walking past the box without really looking at it.

“Do you know what it is?”  he asked.

I bent down to view the box more carefully.  “She’s made a pattern with the different colored stickers?”

“It’s her airplane.”

“Really?”  My mind began to tick off the greater implications – imaginative play, creative thinking, fine motor dexterity, perhaps an attempt at patterning…

“The stickers are the windows,” Richard told me.  “You should have seen her.  She got inside of it, put on her seat belt and flew.”

“Wow!  How great is that?” I said.

This morning when I went out to help Emma make her breakfast, I pointed to the box.  “Hey Em.  What’s that?”

“Emma’s airplane.”

Then she proceeded to sit inside of it, buckled her seat belt and pushed the purple colored “button” which evidently “starts” her airplane and began to fly.  “Push the button.  Go up, up, up and fly!”  Emma said.  She held onto the box and began shaking it.  “Uh-uh-uh!  It’s bumpy.  You have to be careful.  You have to hold on!”

“Where are you going?” I asked.

“Up in the sky,” she said, with a tone that seemed to hold a hint of sarcasm, as in – Duh, where do you think? or maybe she was just tired of having to state the obvious.

“Yes, but where will you land?”  I pressed.

“No.  Up in the sky,” she said.

Because clearly I was missing the point.  The destination wasn’t the goal.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

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Biting and Other Self Injurious Behaviors – Autism

Posted on September 22, 2011 by | Leave a comment

Yesterday Emma came home from school with her forearm covered in bite marks.  I sat down next to Emma on her bed and gently touched her arm.

“You bit!”  She said sadly.

“I can see that,” I said, stroking her arm.

“I want to unlock it,” she said, twirling a scrap of what was once her blanket around and around her index finger.  “I want cokie,” she added.

I continued to stroke her arm.

“You cannot bite!  Emma!  No biting!”  She shouted.

When Emma is very upset, she begins to script.  In other words she mimics things others have said to her using the same tone of voice and if they have an accent, she’ll say the words with the same accent.  It’s a bizarre experience to listen to your upset child alternate between using someone else’s words, tone and inflections and her own voice, as though she were auditioning for all the roles in a play with an ensemble cast.  Sometimes she’ll throw me into the mix – “Oh sweetheart!”  and then severe and scolding – “You cannot bite!  That is not okay,” with her own pleading, “I want cokie, I don’t want to lock it up,” then the logical, calm tone of a teacher or therapist, “You can have cokie later.  First go to the roof, then you can have cokie.”  Her face crumples up while she fights back the tears, often losing the battle and collapsing into an anguished heap of heaving sobs and cries.

At a certain point, when her frustration, anger and upset become more than she can bear she turns it inward and becomes violent toward herself.  The emotions too great for her to contain, she bites herself, leaving the imprint of a full set of teeth upon her arm or finger or hand.  Once, when I held her arm to prevent her from hurting herself she jerked her other arm away and punched herself hard in the face.  The force with which she did this, took my breath away.

I mentioned on this blog, once before, when I was younger I struggled with bulimia.  A more accurate description would be less a struggle and more a complete and utter surrender to the eating disorder.  A therapist I was seeing at the time talked of the act of vomiting as self inflicted violence and I remember being furious with this description.  I wasn’t being violent toward myself, I was simply pursuing a thinner physique.  But after years and years of therapy and then recovery I came to recognize the violence in what I had done to myself for all those years.  When I see my own daughter hurting herself it is impossible for me not to reflect on those years of frustration and rage.

Emma’s acts of self injurious behavior are expressions of her rage, frustration and there is an added piece to this, I am convinced – the desire to control the pain, coupled with her many and varied sensory issues.  I think the combination is deadly.  But how to help her?

That is the question I have no solid answer to.  For now we are trying to explore other ways for her to get her sensory needs met without hurting herself.  However I know from having engaged in destructive behavior for more than two decades how entrenched and addictive that behavior can become.  There are no easy solutions, but then autism itself is like that.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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Emma’s Sense of Humor – Autism

Posted on September 15, 2011 by | Leave a comment

Emma’s sense of humor, much like everything else about her, is… quirky.  As a baby, Emma squealed with excitement when we popped out from behind things and yelled, “Boo!”  As Emma grew older she continued to delight in anything resembling silliness.  We were filled with hope when, during one of Emma’s many early intervention therapy sessions, she offered some play-doh to the therapist, only to pull it away just as the therapist reached for it.  Emma howled with laughter as the confused therapist realized Emma was playing a joke with her.

Afterward the therapist made a point of telling us how Emma’s sense of humor suggested tremendous potential, how she was expressing a desire to interact, how unusual this was for a child with autism to want to initiate in such a creative way.  Emma continues to display her silliness and creativity in surprising ways.

Emma with what’s left of her cokie  (this use to be a crib blanket filled with down).

When I came into her bedroom and saw her I said, “Em!  What are you doing with cokie?!”

To which she laughed, “Stick cokie up your nose.”

“That’s so gross, Em!”

“No not going to stick cokie up your nose, stick cokie in your ears,” she replied, still laughing.

“Ew!”

“That’s funny,” she then said.

It reminded me of when we took Nic out to eat at a Japanese restaurant.   “Look Mommy!”  He said as he unwrapped his chopsticks and stuck each into a corner of his mouth.    “I’m a walrus,” he managed to say.

My grandmother was known for, after a few drinks, rolling a napkin up, and placing it above her upper lip pretended it was a mustache – so maybe it’s genetic and not a display of extreme intelligence after all.  Not that she wasn’t extremely intelligent, she was…

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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In the Playground – Autism

Posted on September 12, 2011 by | 2 comments

Yesterday while at the playground, Emma pushed a little boy off of a roundabout.  It wasn’t clear why she did this, though it reminded me of a game they played at camp where the little girls stood in line by the pool and then pushed the girl in front into the water.  (I can hear the defensiveness in this sentence, I know. But let me continue.)  The boy was seated on the edge of the spinning circle, like a giant saucer, filled with a dozen other children.  A few children were on the ground pushing, while running to make it go faster.  The children seated within the saucer were shrieking with laughter and then the little boy went flying off.  The child’s mother, understandably upset, was furious with Emma and yelled at her that this was unacceptable behavior.

I was seated with a friend of ours whose son was playing with Nic.  I noticed Nic staring at me with a horrified expression and making gestures with his hands for me to come.  When I reached him he told me what had happened.  “She just pushed that kid off, Mom.”

“Which kid?” I asked Nic.

“That one,” he pointed to a young child being led away by his mother.  “We were all just playing and this one kid was spinning the thing around really fast.  Emma was laughing and that boy was sitting pretty close to the edge and then Emma just pushed him and he went flying.  The mom got really mad and started yelling at Emma.”

“Okay.  Thanks Nic.”

I made Emma get off and had her sit on a bench next to her father.  I told her she was to sit still until I returned.  I then ran after the mother and her son, apologizing and explaining to her that Emma has autism.  I told her how very sorry I was and inquired after her son, who seemed frightened and confused.  I told him Emma hadn’t meant to hurt him.  The mother told me, with an apologetic look that Emma’s behavior wasn’t okay.  I nodded my head and agreed with her.  She then said, “Oh dear, I didn’t know.  I hope I didn’t scare her when I yelled at her, but I was so upset.”

I assured her that Emma was fine and again apologized for Emma’s behavior.  When I returned to where Emma was seated I said, “Emma.  You cannot push other children.  It is not okay to do that.  You could have hurt him.  Do you understand that, Emma?”

“You cannot push,” Emma said, nodding her head.

“That’s right.  You cannot push.”

“Go back?”  Emma asked, pointing to the spinning saucer.

“No.  You can sit here next to me.”

“One minute,” Emma said.

“Ten minutes.  You will sit next to me for ten minutes Emma.  And you may not play on that again.  You can run around and do other things.  And Em, if you push again, you will go home.  It’s not okay.  You could have hurt that little boy.”  Emma looked down at her hands.  “Do you understand, Em?  It’s not okay to push.”  I watched her for any sign of understanding.  She continued to stare down at her hands, which were in her lap.  “Em.  Do you understand?”

“Yes, mommy.  You cannot push.  It’s not okay.”

It is times like these that I feel at a loss.  We so rely on communicating through speech that these sorts of situations feel impossible with Emma.  She showed no sign of understanding, she wasn’t angry, she didn’t seem particularly upset, if anything she seemed completely baffled by the whole situation.  “Emma.  Why did you push him?”  I finally asked.

“You pushed.  It’s not okay to push,” was her response.

One hears about aggression in children with autism all the time.  Emma, when upset, frustrated or angry, usually hurts herself.  Biting her arm or hand is her most common reaction, but a few times she’s thrown something or punched herself in the face.  It is difficult to witness these acts of violence against herself.  It is even more difficult to make her understand why it’s not okay to hurt herself.

But this episode in the playground was different.  Emma wasn’t acting out in anger, evidently she’d had no interaction at all with the little boy she pushed.  What was going through her head?  Why did she push him?  It’s impossible to know.  But I do have a few ideas, none of which dismiss her behavior, but they do explain what may have happened.  Emma craves sensory input.  Often children who crave vestibular movement can be calmed by having ten minutes or so of it.  Emma appears to never be satisfied no matter how much she gets.  Richard and I have had countless conversations with her various therapists about this.  In our neuro-typical world we call people like this “thrill-seekers”.  In the world of autism it’s called sensory integration disorder –

Someone once explained to me that it’s a bit like having a body part fall asleep and the desire to stomp, pinch or hit that body part in the hope of “waking” it. Roller coasters, swings, trampolines, carousels, anything that moves quickly and erratically are Emma’s way of “waking”.  Pushing the boy was not an act or display of aggression as much as it was an unconscious response to her craving more movement.  It may be that he brushed against her by mistake or perhaps he was too close to her or she may not have been aware of him at all.  Unfortunately none of this helps the child who was pushed or his mother.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

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Asking – Autism

Posted on September 8, 2011 by | Leave a comment

I remember the first time Emma’s older brother, Nic asked permission to do something.  He was about 14 months old and he asked if it was okay to take a particular toy with him to the playground.  It was noteworthy for a number of reasons, but as his mom, I remember thinking how incredible it was that this tiny child understood that if you asked, rather than just did something, chances were you would be able to do whatever it was.  The whole “polite” thing wasn’t part of the equation yet, but it soon came to be, shortly thereafter.

With Emma it was different right from the beginning.  For one thing, she didn’t ask questions as much as demand that her basic needs were met.  Because her language was severely delayed, she would often drag one of us to the refrigerator and indicate what she wanted.  As she didn’t “want” our attention, toys or many of the things other neuro-typical children do, there was less motivation to ask for things.

As Nic grew older his questions became more complicated and interesting.  Suddenly we were discussing such topics as religion, questioning the existence of God and if there was a God, who made him.  Could there be a heaven without a “God”, why did people die, was there life beyond our planet earth, how did we come to be and what was our purpose, where did the earth come from, how is it possible that the universe is infinite and what does that mean, exactly.  Nic also became curious about Richard and my experiences.  He wanted to know if I’d ever felt scared (yes!), whether I was nervous when in front of new people (often), when did I know what I wanted to be when I grew up (that concept continues to evolve), when did Richard and I meet, and the questions have never stopped.

Emma does not ask questions about life and the world.  She has never asked me a personal question.  But she has learned to ask for things that she needs or wants.  Often the question is a demand with an upward lilt added, making the demand more palatable, as in  – “Go to the zoo?”  “See the snake bite boy?” “Apple juice?”  However lately her questions have changed slightly.  It’s a subtle difference, but I have noticed it a number of times in the last few days.  This morning she came into the study (this in and of itself is startlingly new as in the past she would simply ask from where ever she was and then when no one responded because no one heard her, she would begin to scream until someone appeared) but today she found me and said, “Mommy?”  Then she waited for me to respond.  When I looked up, she said, “Can I have a caramel yogurt?”  Again she waited for my response.  This too is different.  In the past she might have asked if I was standing nearby and then after uttering the words she would have raced off, not waiting for a response.  The question was rhetorical.

“Sure Em.  Go have a caramel yogurt,” I said.

To which she ran off, only to reappear a few minutes later saying, “Okay.  Last one caramel yogurt?  Eat one more and then it’s all done.”

“Yeah.  Okay, Em.  That sounds good.  Go have another one.”

“Okay!”  She yelled as she went back into the kitchen.

Last night she found me in the bathroom, where I was brushing my teeth.  “Mommy?”  She waited.

“Yes, Em?”

“Can I watch Winnie-the-Pooh?”  Again she stood looking at me expectantly, waiting for my answer.

“Sure Em.  But first put on your nightie and brush your teeth.  Okay?”

“Okay!”  she said tearing off to change.

I cannot describe my surprise at her actually waiting for me to respond.  This is new and a welcome change.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

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Do We Have An Obligation to People With Autism?

Posted on August 30, 2011 by | Leave a comment

The scene in the airplane last week involving the man with autism, has stuck with me.  I keep wondering what the airlines would need to help them cope with situations such as the one we witnessed.  Of course I am approaching this question with the assumption that they are interested in mitigating the damage and distress such a scene may cause, not only for the man with autism, but for the other passengers seated nearby, as well as the flight crew.  At the very least – the airlines and all such companies who may come into contact with persons with autism should be educated enough to know how best to deal with most situations that might arise.  Given the current rise in autism, it seems scenarios such as the one I described last week will occur with increasing frequency.  At the very least, it does seem obvious that when a person with autism has requested a window seat they should be accommodated, just as someone who requires a wheelchair is given an aisle seat.

Why is it that neurological differences are treated any differently than physical?  The answer is –  for the most part neurological issues go unseen.  We cannot see inside the person’s brain and so we make assumptions.  Assumptions that the person has a psychological “problem” or are simply behaving badly because they are – poorly brought up or have emotional problems.  We have words for people like this, most of them cannot be written without using a lot of keyboard symbols.  We have little tolerance for those who seem to indulge their worst desires and allow themselves to act out on those selfish interests.  But what of the people who, like the man we encountered last week, have autism?  Do we not, as a society, have an obligation to these people?

For more on autism and my daughter, Emma’s journey through a childhood of it, go to:   www.EmmasHopeBook.com

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