Pica, Rumination, and Other “Behaviors” 1

I don’t remember noticing pica (eating inedible objects) when Robert was a toddler.  It might be that  my  memory decided to ignore that fact. It might be that I simply didn’t notice pica as I was overwhelmed with many piling problems. But it also might be that this behavior  was not present yet.  I noticed this disorder when Robert was almost five.  Robert knew that he was not supposed to put inedible objects into his mouth so he tried to hide this habit and mostly succeeded.   I remember one of his teachers from ABA program telling me that she worked with Robert while the other teacher was observing and yet they both missed the moment when Robert put a piece of a crayon in his mouth.  By the time he was ten years old, Robert’s ability to conceal his habits became uncanny. At home I had not noticed Robert even touching winter insulation of windows and doors. I saw him looking through windows, nothing else. I became  suspicious when I found out that  many parts of the insulation were missing.   I could sit next to Robert on a sofa watching TV with him and  not notice that he was pulling fluffy stuff from the sofa’s pillow through a little hole along the seam and placing this cotton like substance in his mouth. Whenever I turned to him he was watching TV completely engrossed in the movie.  I finally connected thinning pillow and missing insulation to Robert’s pica and bouts of aggressions, self injurious behaviors, and very dramatic screaming.  I removed the insulation, I replaced the old sofa and the frequency and severity of those behaviors decreased dramatically.  But not completely.

There was another substance to blame:  silly putty.

Robert loved silly putty, craved silly putty, played with silly putty, and …ate silly putty. Silly putty seemed to be a great reinforcer.  Robert would do everything for it, read, write, count, and follow directions.  Moreover,he was playing very appropriately.  He  rolled, squeezed, and stretched.  So his teachers and I were not able to write such powerful  reinforcer off.  We  thought that we would just keep it under strict  control, limiting Robert’s access to it and observing him very closely.

We were deceiving ourselves.

We were no match for Robert’s ability to sneak any gooey substance into his mouth and then stomach.  We paid for our weak resolve by witnessing Robert in distress. He was in pain and we couldn’t do anything then about it.  Only when I decisively removed all silly putty, rubber balls, soft plastic materials from the house, Robert’s behavior improved significantly.

I wonder if constant reinforcing with candies, chips and juice didn’t contribute to this condition.  Constant reinforcing meant that there was something almost always in Robert’s mouth.  He might have gotten used to that feeling and craved it.  I knew that this schedule of reinforcing was not good for Robert’s teeth, but did it also aggravate or cause his pica?  

I also wonder why I didn’t know then that pica was often associated with iron deficiency.  From pediatricians to psychologists everybody assumed that pica is one of the autism related behaviors, so nobody suggested that I check Robert’s iron level.

And I didn’t.

Explain This to Me.

One of the residues of my desperate adherence to Applied Behavior Analysis was the silly conviction that there is no point of explaining anything to Robert.  It is possible that this conviction was a result of a faulty reasoning but, nonetheless, I assumed that I should only apply behavioral methods across the day.  Firstly , it was simpler.  I didn’t have to guess what Robert wanted.  Secondly, since Robert never explained  anything to anybody how could he grasp my explanations? Of course, I heard of “Social Stories”, but  they existed in the parallel universe of different approaches to children with autism.  Robert’s school didn’t use them with Robert  so I didn’t either.

Robert was ten or eleven years old.  It must had been the summer, because days were long and evenings warm. And it was such a warm ,summer evening when Amanda, Robert, and I returned from a grocery store.  Robert seemed “tense”, so I asked him to go to the back yard and relax on the hammock.  Amanda and I carried shopping bags to the kitchen. I asked Amanda to stay in the backyard close to  Robert.  Just in case.  I didn’t finish unpacking the groceries yet when Amanda came back complaining that there were  many mosquitoes outside.  She  had asked Robert to come home, but he didn’t want to. I ran to get spray, but couldn’t find it. I went to the backyard and told Robert to come home. I said that impatiently in this “do it or else” kind of voice.  He sat,  grabbed, and pinched my arms.  Then he hit his own face with both hands.  Mosquitoes were swirling around.  With all the TV’s warnings about  cases of diseases caused by mosquitoes I couldn’t let Robert stay.  So I  picked him up from the hammock. I am not sure if I carried him, dragged him, or if he walked behind me at least part of the way. I don’t remember how we got home.  I remember that Robert was  unhappy.

There is nothing he despised then and despises now more than being confused.  He was confused because  I confused him.  I told him to relax on the hammock and then told him to go home. Moreover, I said  that in this obnoxious tone of voice that indicated to him that he had done something wrong.

I understood much later  that Robert was not upset because he wanted to stay outside.  He was upset because he couldn’t do what he was told to do – stay outside on the hammock.  He wanted to follow directions but he couldn’t follow contradictory directions. 

He was upset for quite a while.  He made grunting noises interrupted by louder screams.  He kicked the bed he was on. Meantime, I asked Amanda to help me make a short book about this incident.  As the noises of disgruntled Robert still were coming from his bedroom Amanda and I quickly concocted a book that described what had just happened.  Amanda made a great drawings of Robert on the hammock and mosquitoes menacingly approaching him from all sides, mother running to his rescue with arms in the air, a person suffering from mosquito’s born illness.  This “creative” improvisation took us no longer than 15 minutes. It was not a classical social story telling what to expect or what is appropriate behavior in a particular situation.  It was a story in which I explained myself to Robert.  We both, Amanda and I,  explained to Robert his own reactions. As we read this book together, Robert looked at us in a way he had never looked before.   He was grateful.

Don’t Blink

Amanda stared at the duck.  It was hard to deduce from the way the duck was standing if it had one leg or two.   Amanda wanted to figure that out.  Jan looked at the sky thinking about a possible solution to his programming problem.  I glanced at the circle of people gathered a few steps from the fountain.  They  seemed to be tourists but  not exactly.  I tried to sort out this dissonance and gazed at the group a few seconds too long. When I turned my head back toward the fountain, Robert was gone.

We were all in Boston Common on a warm weekend day.  All three of us knew that we had to watch Robert closely. He had insatiable appetite for bolting. He could wiggle out of any grip and run. Even Amanda, seven years old at the time,  knew that we had to watch Robert. We watched him.  Closely.    We were spread strategically around a fountain.  Each of us precisely 120 degree from each other.  Robert was running around. We did watch him.

Except for these few second when Amanda looked at the duck, Jan looked at the sky, and I looked at the circle of people .

Robert was gone.

It seemed impossible, illogical, unexplainable, and completely unbelievable. We all watched him.  At least one of us should have noticed something.

“Robert! Robert!”  I screamed knowing  Robert would not react. I screamed  to alert everybody. Soon, a young man approached me asking what had happened.   He didn’t have uniform but he had a police badge.  He notified park rangers. I described Robert to him, but couldn’t remember, at first, what he was wearing.  My first thought was to check the playground. I suspected Robert might remember it from his trip there  18 months before.   But Jan and Amanda decided to run around park’s border to prevent Robert from crossing any of the busy streets surrounding Boston Common.   I was told to stay in one place and wait.  I waited.

Someone told the policemen that a boy matching Robert’s description walked with a man just a few minutes before.  Luckily, that man’s clothes matched Jan’s. No stranger was holding Robert’s hand. Relief.  A few minutes later a loudly talking man approached me.   I thought he knew something but he was saying disturbing things.  The policeman asked him to leave. Amanda and Jan returned.  They ran around the perimeter of the park and didn’t see Robert.

Just  then the policeman told me that a parent called a  park ranger about a boy who was running around the fort like structure of the playground. This parent observed that  no adult was watching this boy.  A few minutes later, we were asked to come and get Robert.  The young park ranger was not able to hold his hand and walk with him to us.   Robert wiggled every time in his own way.

I held his hand tightly.  He was walking as if nothing had happened attempting to skip every few steps. Many toddlers dressed like little ducklings  walked in opposite direction with their parents.    It was a day for the famous Boston’s  Duckling Day Parade.

Robert  seemed happy. His joyful face confused the policeman who was convinced that the  children ran away because  they were unhappy with their parents. To dispel that belief  I said the thing that I have regretted ever since.  I said, “Oh no, he runs because he has autism.”

I still don’t know why Robert eloped so many times when he was younger.  I might make  assumptions about causes  of some of his escapades.  Those assumptions might be  wrong, but they are still better than using  “autism” as an explanation.

That night I was awaken by Robert’s cry. Many times before that night he screamed  from anger, discomfort, or pain, but he has never  cried like  that.  Like a person lost in a labyrinth.

Someone

Reconstructing Robert’s World 2

I can imagine what went through a young teacher’s mind when Robert tried to prevent me from entering his classroom. ‘She must be a terrible mother if Robert cannot t tolerate her presence!’  The first time it happened I was both confused and hurt.  Almost as hurt as that young teacher who came for the first “home visit”  and Robert tried to stop her from entering out house. Robert’s reactions were not an expression of his emotional attachment or lack of it.  Robert’s reactions were caused by his strong belief that people and spaces do not mix.  I didn’t belong to his classroom.  The young teacher didn’t belong in our house.

The same principle ruled who could take Robert to McDonald’s or Applebee’s restaurant. Juan and other respite providers could take Robert to McDonald’s.  Parents’ couldn’t. We could take Robert to Applebee’s and other restaurants.  Robert didn’t mind a new restaurant as long as the people belonging to different spheres didn’t mix there.

Once we invited Robert’s teachers with their husbands to a Ground Round (I think) restaurant to  celebrate Robert’s birthday. As soon as  Robert noticed his teachers entering the  restaurant’s  room the complete disaster ensued! It couldn’t be fixed.  My husband had to take Robert home.

It took me a while to understand how rigidly Robert assigned people to particular space or activity.  He didn’t do that when he was 3 or 4 years old.  He started doing that around his sixth or seventh birthday.  He tried to organize people and places with his own logic and rules. When those separate worlds invaded each other it was the end of both worlds.

For a long time I believed that there was no point in trying to understand Robert’s motives.  Since the motives were almost impossible to understand I should have been concerned with visible, measurable behaviors and their management.

I am not so sure any more.

In the end, understanding how Robert perceived his world/worlds allowed me to take steps to change that perception and  show him that people and spaces  mix, often for the better, so everybody can take him to McDonald.

Reconstructing Robert’s World

Robert, like Mary Poppins, never explains anything. We – relatives, teachers, and friends -have only his actions and reactions to allow us to construct a model of his world. Sometimes, what we discover is quite unexpected.

Whenever our family went hiking Robert followed the lead of his sister, Amanda. When she climbed on the rock, he had to climb on the rock.  When she walked on a trunk of a fallen tree, he had to walk on the trunk.  When Amanda jumped over the curb in a special way, he jumped  the same way. When he noticed Amanda swimming in a  butterfly style, he followed her with an almost perfect butterfly. Something he had never done before…or after.
When Amanda dropped her schoolbag, jacket, hat, and shoes on the floor, Robert got a message.   He run to the hanger, took off his jacket and his school bag of the hook and  together with his shoes threw them forcefully on the floor….

His sister was his role model.

And yet another day…

Robert with his arms  stretched upwards along the refrigerator’s door and a loud  approximations of the word “chip” let me know what he wanted.   Chips together with juice boxes were placed purposefully on the top of a refrigerator  to force Robert to initiate requests. In the ideal world, Robert supposed to approach me, pat me on the arm, and say, “Give me chips.”  But the world was not ideal yet so Robert screamed and banged on the refrigerator instead. Because  I was cooking or washing dishes and my hands were dirty or wet I asked Amanda,  at that time, much taller than her brother, to fetch chips for Robert. She did. She took chips and handed them to Robert.

But Robert refused to take them. He grabbed his sister’s arm and directed  it toward the top of a refrigerator as if he were saying, “Put it back!” .  She put it back and took a box of apple juice instead. The same reaction.  Robert again directed Amanda’s arm toward the top of the refrigerator. Robert was frustrated and he showed it.    Amanda was confused and upset.  Afraid that Robert’s exhibit of frustration would last much longer, I  asked Amanda  to go downstairs and turn on TV.   I didn’t want her to witness prolonged protest of the form and intensity  I couldn’t predict.  As soon as Amanda left, Robert calmed down noticeably. His arms, however,  were still in the same position, stretched on the refrigerator, aiming at the top. “Do you want chips?”, I asked.  He confirmed with his approximations of “Chips, chips, chips.”  I gave him a bag.  He took a fistful of chips and placed them in a bowl.  He calmly  gave me the bag back and started eating.  As if nothing happened.

I understood.

For Robert it  was not Amanda’s role to  give him chips!   She was not his babysitter!   She was not his parent!  She was not his teacher!  She was his pal, role model, sister! In Robert’s world sisters didn’t  do parents’ jobs.

Oh well, now they do.

Utilization Behavior

I am glad that I learned about UTILIZATION BEHAVIOR when Robert was already 17.  For a few previous years I suspected that Robert’s behavior was controlled by his environment. I attributed this enslavement by the environment to Robert’s  severe language deficits.

Language gives flexibility.  Language allows for modification.  Language provides directions. Language is  a tool . Language is a shield.   But Robert didn’t have language.  Because of that,  Robert had to deduce all the relevant information from his surroundings.

When the bicycle was in the garage Robert ignored it.  But when the same bicycle was left in a driveway Robert “read” the message from the environment and act upon it.  He got on a bike, crossed the street, and rode alone to the church’s parking lot, the place where his father had taught him to ride a two wheeler.  He did it “only” twice as only twice the bike was left in the driveway by the member of the family.  Each time his sister, Amanda, took another bike and rushed after him.  Robert followed Amanda home without any reluctance.  Why should he resist?  He had already fulfilled the command expressed to him loudly and clearly by the placement of the bike in the driveway.

Robert didn’t feel urge to light matches when he saw them on a shelf, although he could reach and get them.  But when someone left matches  next to a candle he had to lighten it.   He “utilized” the matches and the candle the way they should be used. Still,  the candle was near the curtains, the curtains near the bookshelf.  Although  the fire was mostly extinguished  before firemen arrived a couple minutes later  the smoke and the uneasy feelings lingered longer.

It became obvious to me that  the environment was controlling Robert’s behavior.  The question is, why didn’t I become aware of that fact  before those dramatic events took place?

Well, I didn’t feel the need to analyze everyday, repetitive events.  If they struck me as unusual I found it sufficient to rely on a few artificial explanations based on stereotypes about autism .  Moreover, Robert had complex relations with his environment.  He was a guardian of his surroundings.  He had to maintain it by bringing it to the previous balance when something was disturbed. For instance, empty space on a shelf over the coffee maker was calling on Robert to give it back the missing phone.  Objects out of place were requesting that Robert puts them back in the right drawers, closets, cabinets,or shelves. Those behaviors could be considered just “tiding up” or… signs of obsessive compulsive disorder.  Only after incidents with a bike and matches I view them as the examples of Robert serving his environment.

If I knew more about utilization behavior when Robert was younger I would have considered it a  result of the frontal lobe damage and felt unable to alleviate it.

Luckily, I didn’t know.  So Robert and I spent  a lot of time squeezing new words between Robert and objects that surrounded him.  Those little words “up, under, first, later, if, then” and many other did what words supposed to do.  They imposed a new structure with passable roads, tunnels, and bridges over Robert’s environment.  They showed that he could move between any two objects, modify them, or even … ignore them.  Those little words  considerably lessened the pressure coming from the environment and ( to some degree) liberated Robert.

Teaching Out of Autism

So what do you teach a child you don’t know anything about even though he/she is your child? How do you teach someone with whom you cannot communicate?  The insistence on teaching gross motor imitation is one of the best ideas brought by ABA crowd.  A child imitates therapist’s gestures accompanied by a short direction, “Do this” . This installs the idea  that another human being is a source of important cues ( information).  That it is beneficial to look for cues to another human being.  It is very important to state that the goal is not to teach child all the separate movements – touching nose, raising hands, clapping, stumping feet, but to teach imitating what the therapist does in this moment.  It is extremely important distinction.  Robert learned all the movement very quickly, and when he heard his therapist’s making a noise with his mouth (At this time, Robert heard sounds, but not words.), Robert responded with a chain of all previously practiced movements.  He was touching nose, clapping hands, patting his head, and stumping his feet.  He hoped that one of those movements should satisfy his teacher.

Yet there was something I taught Robert even before he started his discrete trails.  I taught him something I believed was easy. Well, It wasn’t!

I tried many things.  Nursery rhymes and finger-plays! Of course I tried that!   Hundred times! Thousand times! Robert liked them.  He was sitting in front of me on a table.  Face to face. He gave me his hands over and over so I could do all the right movements for the spider song and many other songs.  Yet whenever I released his hands from my grasp, his arms froze in the air.  He couldn’t finish one movement by himself.  He waited for me. And of course he didn’t repeat even one word from any of the songs.

What I finally taught Robert somewhere around his third birthday was to string beads.  The beads were large and the string was easy to operate as it resembled shoe lace.  But the teaching wasn’t easy!  Only when I started teaching hand over hand I realized how many complex steps were involved in this activity.

Picking up a bead.

Picking up the string.

Aiming the string at the hole.

Pushing it through.

Letting the string go.

Moving the bead from one hand to another.

Pulling the string from the other side of the bead.

Putting it down and starting over while not letting this one bead slip of the string.

I think I used something which resembled “Forward Chaining” I read about in Foxx’s book on “Increasing Behaviors”.

I did  all the teaching in  a few short sessions spread over one hour.  Each session was approximately 20 second long.  Out of these 20 second at least ten was spent on dealing with wiggly, escaping behaviors of my son.  Robert was sitting at the table.  I was standing behind him, bent over to prevent him from hitting my chin with his head.  Nonetheless, he managed to do just that a few times.  In every session, we worked on just one new step adding it to the previous ones. To be precise, every time, Robert was starting from the beginning and continued until a new step.  When he mastered that step, I finished stringing the bead and we started again after a break.  By the time Robert strung two beads independently, I was exhausted and  depressed.  I doubted if my efforts, my aching chin, and Robert’s clear dislike of the process were worth anything at all. What was the purpose?  To demonstrate that he can learn to do something?

Sadly, yes.  I wanted, I needed to see Robert’s learn.  Learn something.  So he did.  So what?

And then….

Some time later that day, I saw Robert sitting on the floor with a box full of wooden beads stringing them one by one until the string was at least half full!

First independent activity in his life.

First few minutes spent purposefully in an organized way.

The first few minutes I could relax.

I could give Robert a box of beads and go to the bathroom alone!

Priceless!