Showing her how rewarding life can be

One of the reasons that people seem to get down on ABA, is the use of reinforcers.  I’ve heard it equated to animal training.   There is some truth to that analogy, and I’ve learned that is not such a horrible thing.

When we started ABA during early intervention, the program director spent a lot of time asking me and working with R. to determine what she really liked.  At the time, it honestly wasn’t much.  Other than balls or bubbles, she had a few stuffed animals she liked.  She liked watching Sesame Street, but Elmo and friends weren’t BFFs yet.   Naturally they wanted to use food items, and I bristled at this, but I compromised, and asked that they not use her meal time food as a reinforcer, only snacks and treat.  As worried as I was, the food reinforcers actually did not work that well.  She would quickly tire of whatever it was, and she was not always hungry.  She had sessions for 5-6 hours a day at that time.  If every therapist offered her snacks, there was no way she could eat it all.

The Program Director asked about using videos on the therapist’s Iphones as a reinforcer.  I said my only concern was that R. might be more interested in watching videos and cry when they were not available.   The PD said that if they were that motivating, they would do the trick.

The videos actually worked great.  R. was really motivated to watch them, and she quickly learned that she was expected to do something before she could watch one.  That sounds really simple, but there are really several things that the consistent use of a reinforcer taught her, even at that early stage.

  • There are things she wants that an adult has to provide
  • Her actions are directly responsible for getting her desires met
  • If she pays attention to an adult’s requests, and complies with them, she will learn the actions required to get what she wants.
  • She can wait for things she wants, even for a short time.

I know that there are some parents who think that children are praised, rewarded and bribed too much, granted these are generally NT parents.   So what is the difference between a bribe and a reinforcer?   The way I see it, a reinforcer rewards desired behavior after it is done.  A bribe rewards a behavior whether it is desirable or not before it is finished.

A good example is crying.  If R is crying and I know some gummies will make her happy, if I give her the gummies while she is still crying I am bribing her to stop crying.  I am also teaching her that the way to get gummies is to cry.   If I show her the gummies, and  get her to stop crying and say gummies and then give then to her, I am reinforcing her use of words.  I’m teaching her that yes I know what she wants to make her happy, but she has to use words to get it.  Crying doesn’t work.

Now R. is really in touch with the fact that she is expected to do something to get her requests met.  She is primed, waiting for a prompt to tell her what to do.  We have to be careful to wait to see if she will say the word spontaneously.  Sometimes I’ll tap the item, which is a mistake because she will copy my tapping, thinking that is the response I’m looking for.  Slowly but surely we are hearing more spontaneous words.

I think that we all respond to reinforcers and even bribes all the time without thinking about it.  It is really necessary to analyze all of the ways that we are reinforcing her behavior even if it is unintentional.   I gave R. a piece of colored chalk and a chalkboard and she scribbled for a while until the chalk broke.  She brought me the pieces, I assume she wanted me to put them back together.  I gave her another piece of chalk.  She broke the next one, brought me the pieces and I gave her a new piece.  I was watching her and the first two times it seemed like it was an accident that she broke the chalk, it broke while she was scribbling.  But the third time, she scribbled for a bit, and then intentionally broke the chalk in half and came to me for another piece.  Even though I had her say chalk each time, she had quickly come to the conclusion that breaking the chalk was the key to getting another piece.

I suppose that someone who is anti-ABA could argue that the faulty methodology behind ABA’s teaching has led my daughter to make incorrect generalizations.  But I really think that this is a reflection of how R. tends to generalize things.  She does not make the same connections that I would.  Her vision of cause and effect is limited, but with repetition and experience her skill in this area gets better and more functional.

Now she has the ability to understand first this and then that, as long as we are talking about something she understands.   This is really useful.  There are many opportunities to tell her if you do this, then you get that.   I am working on getting her to wait for me when she requests something.  She always wants me to drop everything and comply with HER request.  I’ll tell her first I’m going to have a sip of my coffee, then I’ll get you a cookie.

I also find that when she needs to do something new or different that she is aversive to,  if I explain it simply and give specific perimeters like counting- do this for a count of five, she is much more compliant.

Some people ask if ABA is constantly rewarding for desired behaviors, does the child spend the rest of her life looking for a reward for every task completed?   ABA does actually have a system of fading reinforcers and using a hierarchy of more and less motivating items depending upon the difficulty of task.    I’ve also found that while the therapists still use toys and food reinforcers, they also sing songs and do all kinds of silly games with R. that she likes.   She asks for these activities, so it is like her reinforcer is doubly rewarding – she is rewarded for completing her task, and she is motivated to do something social.

I don’t see R. becoming like a trained dog, looking to perform tricks for treats.  It’s more like she’s a social being in training.  She’s making her own study and practice (with our help) of how rewarding just the act of socializing is, and how crucial engaging with others is is to getting her needs met.   She’s also learning that while the world is filled with many unknowns,  there are also plenty of great things.

January ABA team meeting

We had our monthly meeting today with the ABA team.  One of my concerns is that R. is over generalizing the mand, want book.  She is saying want book for nearly everything she wants.   The supervisor thought that this was typical for R, and she’s right. R. does have a tendency to over generalize specific mands when they are first learned.  She also said that they are working on an object identification program that will help R. increase her vocabulary, and this should help.

R. will come to me and say want book, while she hand leads me to what she wants, which is rarely a book.  If she wants a cookie, I’ll say want cookie and she will only repeat the word cookie.  I know it is common for children with autism to repeat just the last word.  I do find I can get R. to repeat two word requests when they don’t contain the word want.

We discussed this for quite a while.   They suggested that when she says want book, we should give her a book, even if we know that is not what she wants.  Then when she refuses the book we should prompt her to say the correct mand.  We decided that we should limit our use of want, okay I pushed for this, but it wasn’t hard to get them to agree.    So instead of want cookie, I’ll say eat cookie, instead of want water I’ll say drink water, instead of want open, I’ll say open door.    They modified their mand program so they will work on eat cookie, play ball and want doll.

R. has started saying Hi spontaneously, mostly to inanimate objects.    She was cold so I put a sweater on her, she looked at it and said Hi, with the most joyous, glad to see you tone.  She said Hi to the water in her shower, to the box of cookies, to the new straw I put in her cup, always with that pleased as can be tone in her voice.   The behaviorist and supervisor thought this was a little weird, but cute.  The therapists said they thought it was typical behavior for  an early talker.

They are increasing R.’s sitting on the toilet to twenty seconds, up from ten seconds this week and last.  Her pants are still on while she is sitting.  We discussed the fact that she needs to sit for the entire twenty seconds with out any prompting.  They are giving her a reinforcer after sitting, and they wondered if they should give her the reinforcer while sitting.  I said that I would like to keep reinforcing her after sitting, until we get to her sitting with her pants down.   Then when we switch to pulling her pants down, she’ll also have the addition of a reinforcer while she is sitting.  They agreed.

R. has been doing jigsaw puzzles with the image on the background, so it is really matching.  They are going to start doing the same puzzles without the background.  I’ve been doing a jigsaw puzzle with her lately with no background, and she is starting to get it.   I think she has memorized the picture, but that is okay, at least she finds it interesting.   She’s bored with her insert puzzles, so I’m looking for other activities like that.  It’s like it needs to be a little challenging, but not too easy or difficult.

They are working on a new tracing program.  R. is supposed to trace a dotted horizontal line.  She needs a little bit of a prompt but she seems to like doing this.   I know she likes to have me hold her hand and we do dot to dots or write the alphabet.  The behaviorist wants me to stop doing that until she gets further along in this program.   It bugs me a little, but I do get where she is coming from.  We’ll do more coloring.

I finally asked about being provided a list, even a short one of activities that we could do with R. on days off and sick days.  She seems to be bored and looking for more to do on those days.   They said they could give me a list of the programs that were on maintenance, and seemed to think it was a good suggestion.

One of our therapists is leaving, Friday is his last day.   It happens all the time, but it always makes me a little sad, and he says he is too.  R. really loves him, I hear them both laughing throughout their sessions.

Reading material- Art as an EI Tool for Children with Autism

Thanks to the library, I recently read the book  Art as an Early Intervention Tool for Children with Autism by Nicole Martin.   Ms. Martin has a younger brother with autism.  She was trained by a behaviorist as a young adult to work with her brother.  As an adult she is an art therapist working with people on the spectrum.

The first chapter describes autism.   If you are like me and have read tons of autism books, this chapter seems unnecessary.  She does offer good descriptions of scripting (echolalia), perseverating and stimming.   I think my favorite part from this chapter is:  Children with autism hear “no” a lot from adults; helping them find ways to express and develop their talents lets them say “yes” to themselves.

She discusses how humans seem to have a natural tendency towards making art, and reasons that there is no reason to think that people with autism would be any more or less interested in art making then their typical peers.   She also mentions that symptoms of autism such as hyper focus or tactile defensiveness, can make it appear that the individual on the spectrum is not interested.

Ms. Martin outlines what she calls basic assumptions that  she writes need to be understood before using art as an intervention tool.

The adult is not “fixing” a child’s artwork, but using art to “fix” parts of the child that can be best engaged using art

The art itself (the product) is not as important as gaining the self-discovery, experimentation, tactile tolerance and so on (the process) that is required to make it.

Skills such as imagination and creativity are worth rehabilitating in children with autism.

You must believe that creativity can be learned.

The author describes “good scribbling” (focused, contemplative, experimental, sometimes even chaotic) and “bad scribbling” (symptomatic). She provides some really useful illustrations and easy to understand descriptions of children’s art development using the theories of Victor Lowenfeld and Rhoda Kellogg.

The author gives a number of good tips to help a child with autism move beyond scribbling.  She suggests reinforcing any scribbling or attempts at art work, but to give extra praise and reinforcement to attempt that are the best, or exhibit experimentation and variety.

Visual supports are also another tip- drawing a circle or line on the page can help jumpstart a drawing.  When a child puts art tools in their mouth she suggests offering an appropriate chew item. (I can attest that this works).

She also suggests that the parent (or therapist) make art along with the child.  She offers the idea of copying what the child is doing.  I found it really useful that she says the parent should attempt to draw at the child’s level, and to model appropriate scribbling and early drawing.  She mentions that a higher skill level can fascinate and frustrate a child with autism.  This reminds me of what John Holt wrote in How Children Learn, about how children lost interest in activities in which he clearly knew more then they did.

Ms. Martin lists nine autism symptoms and the corresponding artwork characteristics.  It is an interesting way to look at it.  One of the symptoms is sensory issues and the characteristics are – use of materials for self stimulation, tactile defensiveness and art material’s impact on regulation.

She also lists six major goals for children on the spectrum that can be best addressed using art.   One of them is sensory regulation and integration.  She writes Some children on the spectrum get “stuck” in the kinesthetic feeling of using art materials and are slow to move into representational work.    Her suggestions are to become aware of a child’s reactions to different textures and to take control of art activities.  She also suggests activities that create artwork using the entire body like tracing and masks.  I would have liked to read more details about how to work with this.

The author details what she calls tools of the trade, describing paints and other art materials.  And she also gives tips for providing the optimal environment for creating art, what she calls a quality art experience.  She writes An individualized directive with least invasive prompt possible is my personal rule of thumb when working with a child with ASD.  She gives a very good and detailed description of prompt hierarchy, and shows her knowlege of ABA with suggestions for problem behaviors and reinforcements.

Reference: Art as An Early Intervention Tool for Children with Autism by Nicole Martin, (Jessica Kingsley Publishers, 2009) Pages 25, 30, 31, 41, 59, 73, 113

Encouraging Communication – What’s working Part 2

Play skills are directly related to communication abilities.

One of the first things that our first ST told me was that developing play skills is crucial for early communication.   I would like to understand the hows and whys better, but I have seen that as R.’s play skills increase so does her ability to communicate.
In the beginning I felt like I should always be working on something with her.  I’d talk to her constantly, follow her around reading books, doing all kinds of things that did not hold her interest.   One afternoon I just started with what she would like to do – I chased her, and she loved it, she engaged with me and was smiling and laughing.  I realized that although it did not seem to have anything to do with encouraging her to talk, our play was a step in the right direction.

R. like many children on the spectrum only engaged in exploratory play.  She would shake, hit, throw, mouth and examine toys.  Sometimes she would line them up.  I hosted a playgroup for a typical Mom’s group before R. turned two.  I did not know about the autism yet, but I knew R. did not play like other kids.  A baby who wasn’t even walking yet crawled over to the toy box, found a car and proceeded to drive it across the carpet.   His older sister put a doll in a play stroller, flung a play purse over her arm and said she was going out.  R. spent most of the time rolling around under the dining room table.

It is hard to figure out how to play with someone who doesn’t seem to want to play with you. When that person is your child, it can be even harder.  I had to realize that any kind of interaction was the goal, and any activity that she found enjoyable was worth pursuing.  I did not need to worry about if the activity was educational or appropriate or anything else.

Activities that require me or another adult’s participation were (and are) the easiest to engage R.   We still play “baby games” like peek-a-boo, chasing, tickles and raspberries.  In the beginning one of the few sure fire ways to engage her  was to let her knock over a tower of blocks that I stacked, she would do this over and over.   Bubbles, wind up toys, even a whoopie cushion all got her attention and made her want more of the activity.  The ABA therapists are really good at coming up with their own silly games.

A couple of silly games we are playing now- R. will lead me to a computer chair with wheels , I’ll prompt her to say come, and when she wants me to sit, I’ll verbally prompt her to say sit.  She will then climb in my lap, say ready, set go and then I have to give her a chair ride.   A variation of this is that she will lead me up the stairs, I’ll prompt her to say come and then up.  She then pulls me to sit down on the top step, and I’ll prompt sit.   She’ll climb in my lap and say down- again she wants a ride.  I’ll make her say down for every step.   With games like this that are consistent, she seems to be able to say a spontaneous word for the start of a desired activity  (ABA calls this manding) more consistently.  So she will say ready set go, or down with no prompt most of the time, but the lead in words -come, sit, still require verbal prompting the majority of the time.

I keep some toys out of reach, and some are in boxes or bags that she can’t always open, so she has to ask for them.  During EI, R. had a program that was just the therapists demonstrating different things to do with toys and taking data on her interest level and attention span.   I try to come up with interesting and different things to do with her toys, so she will ask me to repeat the activity.

Floortime talks about joining in a child’s play, and this is a good way to engage R. when she is perseverating or just on her own agenda.  When we started, one of her favorite activities was to carry all of something, like blocks or stuffed animals one or two at a time from one side of the house to another.  I would get in the way and hand her the animal or whatever, and just insert myself into her game.  I would also mess up her pile, which sometimes annoyed her, but hey I got her attention.

I think the reason that children on the spectrum are limited in their play is because they literally have difficulties imagining anything else to do.   It seems to me that the repetitive nature of her play was (and is) comforting to her.   Most people have an easier time in most situations if they have some idea about what is going to happen.  Perhaps for R. it is that she can not even conceive of a unique situation until she has seen it, and often she might need to see it several times.   If I pick up R. in the kitchen and run or spin her or do something fun, she will hand lead me back to the exact same spot to repeat the activity.  It doesn’t occur to her that I could do this anywhere, until I show her.

Thinking about pretend/symbolic play it makes sense that children on the spectrum would have difficulties in this area.  Why is symbolic play so significant?  I wondered this after our diagnosis, and I’m probably not the only one.   Symbolic play is essentially how she is perceiving and reenacting her experiences.   I think that when R. did not have any symbolic play skills, she also did not have much knowledge about or ability to manipulate her environment.   As R.’s symbolic play increases so does her expressive and receptive language abilities.  I think in the wait for spoken words, I kind of forget about receptive language.  It is so amazing to get responses to things I say, that tells me that not only is she understanding me, she can imagine and conceive of a familiar situation she is not experiencing at that moment.

As an example, We went to Home Depot recently, and as soon as we pulled into the parking lot R. started to cry.  It was clear she did not want to go.  A year ago she would not have even noticed where we were until we were in the store.  She could see the store and imagine (I’m guessing here) the last time we went.  She did not cry the last time, but we had been there the day before, so I’m sure she was tired of it.  I told her that Daddy would go to Home Depot and she and I would go get a cookie at the bakery.  I repeated this a few times and she stopped crying and she even said cookie a couple of times as she climbed into the stroller.

I think it has been the most difficult to encourage pretend play as opposed to other kinds of play.  Probably because I have a tendency to over think it.   R. really liked to set up toys on the dining room table, so it seems like a natural thing to encourage her to set the table with play dishes and food and have her dolls eat and drink.  She will set the table, feed and give drinks to her dolls (mostly Elmo and company).   She will try hats on Elmo or Ernie and she is starting to try out things that aren’t actually hats.  This is a great improvement over a year ago when this kind of play was non-existent.  But her symbolic play skills are still very much in the beginning stages.    She’ll brush Ernie’s hair for a few minutes and then go on to something else.  I’m not seeing many complex scenes acted out.  It is not always easy to interpret what she means by what she is doing.  When we are out she’ll have Elmo and Ernie try out things, she’ll dangle them over the side of the shopping cart and she will be babbling in a conversational tone the entire time.

I set up different play scenarios and I try to mix up the locations and how they are set up, so she doesn’t become too fixed on one way.   I also try to jump in and make her play sessions a little longer.  She will put a doll to sleep and I’ll pick her up and make her tell R. that she doesn’t want to go to sleep.  Or when she removes the doll’s clothes I’ll have the doll complain that she is cold.  R. is becoming very receptive to me playing like this.  She smiles and is very engaged and will give me items to use to play.

Encouraging Communication-What’s working Part 1

Find an alternative communication method.
We used PECS (Picture Exchange Communication System) with R.  We were fortunate that our ABA provider made all the icons and set up the binders.  We used a combination of the standard icons and actual photographs.  We started hand over hand and offered preferred items.    In the beginning the therapists would put her trampoline against the wall and she would have to hand over the icon for the trampoline to get them to put it down so she could play with it.   We keep two PECS books around the house,  one for food and the other for activities.  R. does not use them as much as she used to, I think she really understands it is easier to be prompted to say the word than retrieve the icon, but she will occasionally go back to them and bring us one of the cards.

Sign language is another option.  R. did not have the imitation skills when we began, so this really was not a good fit for us.  I have met other children with ASD who are as adept with signing as R. is with PECS.  One advantage to signing is that you don’t have to bring your PECS book everywhere and keep track of all of those icons.

Our former program director would talk about PECS enabling R. to learn the power of communication. It really is not possible to physically prompt a child to speak, but both of these methods can be physically prompted.  The advantage of being able to physically prompt the correct response, in ABA speak is errorless learning.  The prompt level will be gradually decreased.  When R. started using PECS the prompt was to hand over hand help her remove the icon and hand it over.   After a while the only prompt she needed was for us to show her the PECS book.

Several family members asked me if R.’s using PECS was going to delay her ability to speak.  They were concerned that it appeared easy for her, and she would become reliant upon the method.  I think PECS is what enabled R. to get to the point she is now with speaking.   She was not at the developmental point to be able to access language, but she was able to be taught how to communicate.  NT infants and toddlers in the pre-verbal stage are becoming experts at non-verbal communication,  R. needed to develop these skills before she could speak.  PECS enabled her to have the benefit of being able to communicate at her developmental level.

The ipad and other devices will be opening up new worlds in alternative communication for children on the spectrum.

Don’t reward crying/tantrums

Crying and tantrums are a form of communication.   They were R.’s main method when we started on this journey.  ABA was very helpful in teaching me that I should not give her what she wants when she cries, I should prompt her to communicate her wants.  I wrote about this a few months ago. I’ve read discussions on different ASD boards that describe this method as not acknowledging or ignoring crying/tantrums, and I think this is an incorrect interpretation.   Crying should be acknowledged for what it is, a complaint.  The message I want to send R. is that, I hear you, you are upset, but if you want whatever it is you have to say a word or give me an icon.  Crying may get my attention, but only communication is going to get you what you want.
At this point I can usually prompt R. to say a word if she is crying for something she wants.  This actually happens rarely, because most of the time she will start with a gestural communication (hand leading) and then will either say or be prompted to say what she wants.  But sometimes she can’t have what she wants, or she has to wait and then she will cry.  This is probably more accurately described as a complaint, she usually has no tears and there is babble and sometimes words among the yells.  I also try to explain why she can’t have what she wants and offer an alternative.  So if she’s crying because she’s impatient for the popcorn to finish in the microwave, I can show her the bag that is popping, the countdown timer and say we have to wait.   It’s always harder if it is something she can’t have, but it is getting so much better.  So if she is crying because she wants to go outside, I can tell her it is too late to go out and offer something else to do.  I’m still in awe every time this works.

Consider that communication is more than just words.
Shortly after we started ABA, R. began hand leading.  I realize now this is quite common among children with ASD.  At the time it seemed quite amazing, and now it is so much a part of how she communicates.  Prior to any gestural communication it seemed her only method of communicating was by crying or with a look or expression .   The first programs that ABA started with were what they called anticipation games.  They would do something she liked – tickles, spins, bubbles… and then wait for her to look at them to repeat it.    It wasn’t long before she would gesture by grabbing their hand to continue the activity.     These play activities taught R. that people could do fun things if she communicated.

In the book The Special Needs Child by Dr. Stanley Greenspan, he writes about closing circles of communication.   If I tickle her and she looked at me to continue, that would be one circle of communication.  I really liked this concept because it gave me a sense of actually doing something using skills she already had.    It still feels like a game to see if I can get her to close just another circle or two.   Floortime lite Mama writes about Floortime as a lifestyle, and that is how we do things around here.

No more zombie hands

ABAs imitation programs have been really challenging for R.  At first she really did not have much of an ability to imitate at all.  In the last 6 months or so I’ve noticed that she will imitate something that is of interest to her.  If I’m doing something with one of her toys she will copy me.  The behaviorist told me that this meant she had the ability to imitate, but that it was not yet under instructional control.

When we started with the school’s ABA program, they started with the same gross motor imitation (GMI) program that the EI ABA provider used.  They said do this and clapped their hands.  When she did not clap they would take her hands and clap them for her.   R. seemed to understand that she was expected to do something and she would just hold out her hands.  She did this with the EI ABA also.  This is a result of over prompting.  The authors of The Verbal Behavior Approach call this zombie hands, and that seems so appropriate.   Our EI ABA provider did not adjust the prompt level often enough.  Of course I did not realize this until I did a bit of research and by then it was time for the preschool transition.   Our current behaviorist clearly knew what she was seeing, and instructed the therapists to delay the prompt and gradually they were able to remove it.  The behaviorist and supervisor adjusted the prompt level several times a week, they really stayed on top of it.   R. is going to master not just one but several GMI programs soon.

Looking for answers

I’ve been looking for a book that goes into detail about child development.   When R. had EI, the therapists spent a long time trying to get her to match pictures in a laminated version of the book Brown Bear Brown Bear.   She was never interested.   They tried several different books.  Finally they changed to a 3D matching program using toys and she was interested and did well, moving quickly on to sorting.  I asked why this was easier and they told me that 3D matching is an ability developed before 2D matching.  I won’t get into my frustration over the wasted time.  I would however like to find some resource that explains why one ability comes before another and how it is supposed to typically develop.

In February, when she had her assessment with the school department she could not (or in some cases would not) stack 6 blocks, do an insert puzzle, arrange rings in order on a post, or string beads.  Now she can do all of these tasks, and enjoys doing some of them on her own, not just for a reinforcer.   I wonder why are certain tasks part of an assessment, and what does mastery of each of them mean in terms of development?  It seems to me that after she learned to match and play with some toys appropriately her receptive language improved.  Is that a coincidence, or are they related?

I recently read the book How Children Learn by John Holt.  It is an older book and not specifically about children with special needs.  It did not actually answer my questions, but I do feel like I learned from reading it.  I’m going to use this blog to store my notes about some of the reading I’m doing.

The main point that the author illustrates throughout the book is that children learn best when they are inspired and having fun, not when actually being taught something in a structured way.   Mr. Holt writes How much people learn at any moment depends on how they feel at that moment about the task and their ability to do the task.

He does mention children with autism in one section and it is worth quoting.  ...much has been said and written about autistic children, children who seem to have withdrawn into a private world of their own, who don’t have or want any contact with the outside world at all.  Arguments rage about how best to treat them.  The conventional wisdom still seems to be that for severely autistic children not much can be done; they can perhaps be trained to take physical care of themselves and meet minimal social requirements, but not much else.  But there have been some astonishing “cures.”  Barry Kaufman in his book Son Rise, describes one that he and his wife effected with their apparently hopeless autistic little boy.  The point I want to make here is that they began their cure, and first began to establish some faint communication with their terribly withdrawn child, by making a point, for hours at a time if need be, of imitating everything that he did.  This was the door or path by which they led him or persuaded him to come back into the everyday world.

No one can ever know exactly why this cure worked.  But it feels right to me.  If I felt that the world was so unpredictable and threatening and myself so powerless that I could not risk myself in that world, but had to make a tiny, safe private world of my own, that outside world might begin to seem less unpredictable and threatening and myself more powerful if I could make things happen in it.

All children want and strive for increased mastery and control of the world around them, and all are to some degree humiliated, threatened and frightened by finding out (as they do all the time) that they don’t have it.  Perhaps autistic children need this control more and are far more frightened by not having it, and so, unlike most children, are not able to struggle patiently until they are able to get it, but instead, again unlike most children, must retreat from the big world around them into a private inner world of their own.

I think that repetitive behaviors, restricted interests and rituals can be seen as a symptom of this need for control in individuals with autism.  I also think  Mr. Holt would have liked Floortime.

The chapter on talking was interesting,  I like what he writes about infants learning to speak:

I now feel strongly that much of the time infants are not trying to imitate sounds at all, but are actually trying to speak, that is to use sounds to convey wishes, feelings and meanings.

R. has been babbling for years now.  The quality of the babbling has been evolving. Now it has all the sounds and intonations of sentences, there are sometimes words I can understand mixed in with babbling.   She will look right at me and babble with an expression that seems to say that she is waiting for a response.   I’ve thought for a long time that her babbling actually meant something to her.    Mr. Holt also writes about children learning to write who write what looks like nonsense but actually consider themselves to be writing meaningful letters or stories or whatever.  He wrote that when each of these children finally realized that no one could understand their writing they stopped and were quite upset about it.  They all did eventually end up learning to read and write properly.  I wonder how this applies to learning to speak and to a child with autism.  I think that R. realizes that we don’t understand her when she babbles.  When I do understand what she is saying she gets this expression of pure bliss at being understood.  It makes me feel bad that I don’t understand more and I wonder if this discourages her from speaking more frequently.

Mr. Holt does attempt to answer this question in regards to typically developing children:

I suspect that early infant talkers… mean to send messages with their voices, as the big people around them obviously do, and they think that these messages are being received. Suddenly, perhaps around the age of one and a half or two, it dawns on them that most of their messages are not being received at all, and that they really can’t talk like other people, but must go through a lot of trouble to learn how.  This may be one of the things that makes two year olds so touchy -they have just discovered that among all the things they don’t know how to do, they don’t know how to talk.  They are bursting with things to say, needs and feelings, and awarenesses but have no way to say them.

We assume that since words are the shortest and simplest elements of language that we learn them first. But it is far more likely that we learn words last.  First we learn the large idea of communication by speech, that all those noises that come out of people’s mouths mean something and can make things happen.  Then from the tones of people’s voices and the contexts in which they speak we get a very general idea of what they are saying,

Reference: How Children Learn by John Holt.  (Merloyd Lawrence, Delta/Seymour Lawrence New York 1982)  Pgs 43, 50, 81, 93

Does she protest too much?

When we started on this autism journey tantrums were R’s main method of communication. Our ABA therapists with EI used to track data on crying, they considered crying for ten seconds or less to be a protest and crying longer was a tantrum. It was painful to read actual data about my child crying, but it was extremely educational. Living day to day it felt like she was having tantrums all the time and I was alternating between tiptoeing and tap-dancing to head off the next meltdown. Looking at the data I learned that the majority of her behaviors were actually protests. It’s funny how just thinking about a behavior in a slightly different way really changed my attitude.

Thinking about short lived crying as a protest helped me to react in a different way. Instead of inwardly worrying about how far this would escalate, I could acknowledge the behavior for what it was, a complaint. I started saying things like, “oooh and arrggh” and supplying words to describe what I thought she was protesting about.

Another thing I learned from reading the data was that I was unknowingly reinforcing her crying particularly the protests. Maybe its Mom radar but most of the time I know what she wants and it is hard not to just give it to her. Now I know that we have to get her to offer some form of communication other than crying to get what she wants. It’s a work in progress because we have to keep challenging her to get to the next level. It seems like only intuition and luck tells you when to push.

We introduced PECS at that point and it was a valuable tool to show her that she could communicate in a better way than crying. We started literally hand over hand, prompting her to give the icon for what she wanted. Now she independently gets an icon for an item she wants and brings it to one of us. Sometimes she will cry in protest over something that we don’t have an icon for. Now I’m able to try to prompt her for verbal communication. I model a word that she can say and repeat it, getting down on her level and looking her in the eyes. I make sure to pause for a few seconds, leaning forwards slightly with my mouth open and an expectant look on my face. Sometimes I get something close to the word, and almost always I’ll at least get an okay.

Now sometimes she will babble with the intonation of someone complaining. It sounds so funny. We’re also hearing words mixed in with the crying. The other morning she threw her breakfast on the floor and started crying. Then she said “So hungry! Don’t want that.” Needless to say I gave her a different breakfast option.

Good-bye Early intervention

R. received ABA and speech therapy for nine months.  It seems strange to type that because it really feels like it has been much longer. She had therapy for 5-6 hours a day.  There were six people on her ABA team, four therapists, a program supervisor and a program director.  Plus she had a speech therapist.   I felt overwhelmed at first, it seemed like all of R’s waking hours were spent with therapists.   I certainly appreciate the services that we received and the energy and attention of the therapists.   I have to admit that emotionally, it often felt like the therapists were a constant reminder of all of my daughter’s deficits.   Here they were, demonstrating them in vivid detail, all day long.  That feeling never completely went away.  But as we saw progress it became easier.

In just a few weeks R’s eye contact improved, and she became more aware of people.  She would greet the therapists at the door and she had special little games she played with each one.    All the therapists were great.  They took the time to get to know R., they picked out toys they thought she would like and really seemed to enjoy being with her.  “We had fun”  they would tell me, and they seemed to really mean it.

When R. turned three in February all early intervention stopped.  It seemed like such a shame to have to stop working with the people who had helped her make such progress.

Here are some examples:

Then:  R. main method of communicating was crying.  She would occasionally say go appropriately, or make mmmm mmmm sounds when she wanted something. She would never ask for help, not with a toy or anything.

Now:  She can use PECS to communicate her wants, she hand leads, and she is really starting to talk!

Then:  R. would sit on my lap occasionally, and want to be held when she was scared or super tired, but there was no affection.  She had never kissed us or hugged us.  She tolerated her father,  but really only showed any interest in him if he sang to her.

Now:  She has developed real Daddy love.  She’s happy to see him, has little games she plays with him and she will hug and cuddle with him when she’s in the mood.  She will give kisses, but mostly to her father and stuffed animals.   I do get affection, hugs and lap time are more frequent.  She seems to actually enjoy my company, sitting with me, looking in my eyes and being happy.

Then:  The only ways to really play with R. were to play a game of chase and tickle, or to build towers and have her knock them down.  Even those games were hard to get her to be engaged.

Now: I could list quite a few “games” she’ll play with me. She will even initiate that she wants to play, by hand leading and sometimes bringing me the PECS icon or toy.

Where we started

My pregnancy was normal and uneventful. R was born full term at 38 weeks. She was healthy and developed normally until about 13 months. At that time she became quiet, losing the couple of words she spoke and she stopped babbling. She started to walk at 17 months and then started babbling again.

As her second birthday approached it became obvious to me that she was not developing at the same rate as her peers. She had virtually no useful language, she did not point or hand lead. It seemed like she was in her own world. She spent a lot of time running loops, jumping, crashing and rolling on the floor.

She had evaluations with a psychologist and a pediatrician from the regional center and also from a private pediatrician. She was diagnosed with autism shortly after her second birthday. It took several months but she eventually received 25 hours of ABA and 2 of speech therapy per week in home.

It seemed like there were an endless series of assessments leading up to the start of therapy. R always seemed to be at her worst during these evaluations. It felt like each professional showed her an assortment of incredibly boring toys. She did not have the appropriate responses, so the professional would then present us a laundry list of deficits. I would ask if their therapy would fix this, and they would tell me that there were no guarantees.

It took a couple of months before she really started to respond. We saw improvement in eye contact and engagement within a couple of weeks and it keeps getting better.