Wednesday, May 20, 2015

What Does This Child Bring?

It occurred to me today that the question I should place forward in my mind (and on the table) when a child on the spectrum is about to walk through the door is:

"What does this child bring to me today?".

S/he might bring lack of sleep, excitement, over-arousal, anxiety, frustration, warmth, concern, a disconnect from his/her surroundings, or anything else.

And that is where I have to start.

I can't teach/direct the child if I don't know his/her developmental level on THAT day. I could sing and dance and pull and push, but if the child is not ready to see or hear it, then I have nothing to offer.

This means that what they knew yesterday may not be available today; or they may 'know' things that I don't know they know (what they see at home, for example, or what they hear).

So if a child comes in with a mouthful of swear words, for example, then s/he has learned something that I wish s/he hadn't. So I modulate my response, not letting my shock and surprise show, and gently redirect.

If a child comes in very tense and overstimulated, I have to remain calm and soothing. On a different day, s/he might might need me to be affect-full to get her to notice me.

It all depends on how I answer the question, "What does this child bring to my room today?"

Thursday, April 30, 2015

A Compilation of New Autism Reseach

(NOTE: This post is derived from reading the most recent "Schafer Autism Report", a compilation loosely connected with Autism Speaks and Cure Autism Now, both organizations that see autism as a disability needing a cure. There are differing opinions and politics about that. More on that in another post)

In Volume 16, number 2, of the Shafer Autism Report, the most promising areas of autism research are in genetics and epigenetics. Let me explain.

In the genetics world, scientists have made the discovery that autism occurs as a result of many gene expressions, which implies that there are many "autisms" or at least many genes that drive the disorder.

In the largest-ever autism genome project, researchers sequenced 340 genomes from 85 families with two children on the spectrum. they focused on 100 different genetic variations in the genomes sequenced. They found an amazing result: 70 percent of siblings with autism had little or no overlap in the gene variations that contribute to autism. I think this is amazing; maybe it's because I am not a scientist,  but I always thought that having more than one child on the spectrum had to be genetic!

Epigenetics is the study of the interplay between genetic and environmental health factors. Research has show that certain stressors and environmental factor can activate certain genes. As an example, a recent study in the Journal of the American Medical Association found that women who develop diabetes while pregnant are 42 percent more likely to have a child with autism. Another study linked autism to prenatal exposure to two air toxins, chromium and styrene.

And finally, in a recent study that included approximately 95,000 children with older siblings,  getting the MMR vaccine was NOT associated with an increased risk of ASD, regardless of whether the older sibling had ASD, and that these findings show no harmful association between receipt of the MMR vaccine and autism, even among children who were considered to be at higher risk of ASD.

Even though none of this influences my practice, I find it all fascinating (albeit very challenging to read and comprehend).

Enough for now.

Here's a link to the Schafer Autism Report page:

Monday, April 20, 2015

More Evidence-Based Baloney

The National Standards Project (an entity funded by and based at the May Institute, a well-known Massachusetts school for children with autism based entirely on ABA) complete its Phase 2 of its report on Evidence-Based Interventions, and surprise, they are all ABA-derived.

What keeps people, particularly ABA researchers, so blind to other interventions? Here's what I think: when you study ABA, live ABA, teach ABA, and research ABA, it is not possible for your brain to function outside that universe. It's similar to the phrase, "The blind leading the blind".

What they did not include are the 25 + studies on DIR/Floortime and other relationship-based interventions, which have different research methodologies, different outcomes, and are not based solely on observation of measurable behaviors. That's because these other studies have a different form and function than ABA does, and ABA does not take them seriously, because they are not developmentally-minded themselves. In order to see what is right before your eyes, you have to have vision.

And these researchers do not take into account the personal experiences of adults and young adults who, in their own words, state very firmly that ABA did not 'work' with them, and in fact some of them say that is was a form of abuse to them. (See; "Ido in Autismalnd", "", or "Ask an Autistic" on youtube to begin with).

I am not suggesting that we throw out ABA, but that we be open to other research and interventions.

Another important piece: Zwaigenbaum et al (2009) (This article is co-authored by 20 researchers, represent 17 major institutions and 3 countries) collaborated to write a paper which outlines principles of assessment and effective interventions for children with suspected autism under the age of two. They state, "Interventions should ultimately be directed toward specific functional concerns and be informed by key developmental principles, including the role of the child as an active learner, the social context of learning, and the pivotal role of the parent-child relationship".  In 90% of what I see in ABA contexts, there is no indication that the "role of child as active learner" is a concept that is utilized.

Here's what I want: an end to the polarization and the beginning of combining interventions that work best for the individual child.

Let's be visionaries!

(NOTE: I was unable to load the NSP's pdf file. If you would like a copy, leave a comment on this blog with your email.)

Tuesday, April 7, 2015

Well, It's Been Over a Month

I apologize for being absent. In January and February we received over 110 inches of snow; we live in a small crowded city, there was no place to put the snow, there were no parking spaces, and March was just a mess. So often in March I hibernate, and that is what I did. On Friday evenings, my husband and I usually drive to a local restaurant to eat, but we couldn't do that because there was no on-street parking. So we walked each Friday evening to local restaurants we like well enough.

So, now it is April. And most of the snow is gone, and I am trying to rev up my energy and interests again.

What to write about? Some of the students I serve are making leaps and bounds. Others are not. It is as individual as each student is.

Last week at my school we celebrated Autism Awareness Week at one of my schools. It's too bad that there is a new rule: You can only take photos of the kids if you have a school department-issued camera, cell phone or iPad, and I don't. Also, I probably do not have permission to post photos of the students anyway on my private blog.

But I can post this one:

At the request of my Autism@FMA committee, we coordinated with the City Mayor and he lit up City Hall blue for World Autism Awareness Day, which is observed in many nations. And here I have to add a disclaimer: While "Light It Up Blue" was created by Autism Speaks, we are not politically involved in Autism Speaks in any fashion. We simply wanted to do something as a city that recognizes the significant numbers of children with autism who attend our city schools. (191!). We have significantly reduced the number of students who have to leave the city to attend a private, ASD-only school. Our students are included with their neurotypical peers for many events and on a daily basis.

We had a celebratory event with students singing, dancing, and student poems and stories read by their authors in fifth grade. The fifth graders ran the event (under my supervision) and later we conducted a neighborhood walk with every child in our school. I had walked the route the evening before and stopped at every business and left them a little information about our walk and asked the owners to please come out and cheer our students along as they proudly displayed their posters and cheered for autism and inclusion. As one child said to me a couple of years ago on this walk, "Ms. Sue...we are doing this for my sister!".

And the local barbers, dry cleaning ladies, and teachers at a local day care came out and cheered us. I had a brief handout explaining why we were walking and I quickly explained that we are an inclusionary school and that we are celebrating our 46 students on the autism spectrum. Several pedestrians who were surprised to see us also got the information and were happy for us. It was a delightful day! I was exhausted at the end of the week but quite proud of the way the students welcome their peers and support them every single day.

Sunday, March 1, 2015

Developmental Interventions versus ABA:A Recent Experience

I am in a Google Group for DIR Research, and in that group there are a lot of interesting posts. One I recently came across is by Mona  Delahooke, a psychologist who wrote a recent post describing the possible sensory and other backgrounds elements of 'behaviors'. Here is the link:

As a trained BCBA, we were trained to believe that there are four functions of behavior: Attention, escape, tangible, and automatic (it feels good to the child). While I understand that these four functions are a result of 'observing' behaviors and testing out their functions, have been studies over and over again in the field by ABA researchers.  never have I REALLY believed that those four functions were the only reasons people behave the way they do.

For one thing, with children with autism, motor planning and praxis are a challenge. So are repetitious behaviors. Articles and books have been written by adults and adolescents with autism talk of not being able to control their bodies in consistent ways on consecutive days.

And with my DIR/Floortime training and certification, I have come to see the many, many possible reasons for a child's behavior, and the authentic ways of responding to them.

But here is my dilemma. I work with a team of great and really good people who are basically only trained in ABA. That is the language that they speak.  They are all well-educated and are fine people. We are on good terms and I try to be a team player.

However, in one case, during a recent 20 minute consult period (once a week), I tried to come up with a way to handle one child's behaviors from a relationship-based perspective, and I couldn't explain myself well enough to dissuade them from using a time out and ignoring. How can I explain how one would handle the behavior in a DIR-based way? I found myself coming up short.

How do I go about imparting some elements of DIR with my team? Where to start? I want to help them see that there are benefits to DIR as a strategy in a school district. I'd love some suggestions! the two ways of thinking about children with autism are almost contradictory, and given less than 20 minutes a week, how can I share with them the limits I see in ABA-only and the benefits that the addition of DIR thinking can really benefit our students? I know ABA, and I also know Floortime. Shouldn't I be able to do this?

Tuesday, February 17, 2015

Declarative Language for Children with ASD (Similar to my statement: "We don't ask questions in Floortime)

When I am working with paraprofessionals in DIR/Floortime, the first behavior I change in them is their habit of constantly asking the students questions, even when what they mean is a statement or a directive. For example, in my room children enter the room, sit down and take off their shoes. Too often a paraprofessional (or, often a teacher or Related Service Provider) will say, "Do you want to take off your shoes?".

Wrong. This is not a choice, But I understand, these are adults who want to  be nice.

This does not help children on the spectrum learn language. And what would happen if a child answers, "No thank you"? A therapist should only ask choice questions when there are real choices.

And I just read an article that was given to me by a parent on the importance of using declarative language with kids on the spectrum. It was only two pages long, and it is a  beautifully written statement about the need to use declarative language with these students.

Declarative language is stating out loud what one knows or thinks, in the form of a statement.  It can be used to share an opinion, predict something, announce/celebrate, observe, share past experiences, or to problem-solve.

When our language with children on the spectrum is largely imperative, that is, questions or demands, this teaches the child that there is a right or wrong answer to everything.  Authentic communication is about experience-sharing. If children on the spectrum are expected to how to socially communicate, they need a linguistic environment rooted in declarative language input.

What can we do? Stop asking questions that are not really questions ("can you get your bowl for snack?"). Say, "It's time for snack", and then stand near the bowls so the child sees them. A therapist might say, "WE need something to put the snack in". We want the child to think and help solve the problem.

Model self-narratives to help a child develop his/her own inner voice. Model by making predictions, ponder opportunities, reflect on past experiences.

Provide a window into another person's experience. Use declarative language to describe what is going on, what the child might be experiencing, and comment. We also want to use declarative language to help the child 'zoom out" to see the bigger picture. I have a child who loves to put certain people figurines in one room for the dollhouse, and then  repeat a script about seat belts and blasting off.

I say, "You really love to play that. Look, I can put people HERE and they can blast off", and put different people in a different room. Often, she will simply put my people away, but I keep at doing such things so she sees the bigger picture of the doll house. Or I hide her people, and model blasting off with different people. Then I tell her we have to find her people and we look for them.

I do not remember in which journal I found this article, and I only have a paper copy. I think it might have been ASHA weekly or monthly; it's a newsletter. But the author is Linda Murphy, a S/LP, CCCC. You might want to google her. And we call might want to/need to reflect on our own language around the students. We could make a checklist and take data on ourselves!

Tuesday, February 10, 2015

Thoughts On A Snowy Day

Today as the snow settles and the driveways and cars are all shoveled out, I am taking a few hours to catch up on some reading.

"Coloring Outside Autism's Lines" is an easy read. Written by Susan Walton, a parent herself, it's for parents, and outlines 50 + activities, adventures and celebrations for families with children with autism.  There are chapters on preparing, comfortable clothes, weekend and vacation routines, grandparents and special friends. Here is the link:

I also breezed through "Developing Play and Drama in Children with Autism Spectrum  Disorders" by Dave Sherrat and Melanie Peter. The first couple of chapters rally helped me think and understand about the physical and neurological changes that occur when children play. And play, in children with ASD, tends to be repetitive, scripted, obsessive, and restrictive. Here are a few things that I learned that refueled my passion for play.

Children with autism seem, for the most part, not interested in the world around them or other people. They do not learn without support, and learning to understand and appreciate their own emotions and those of the people in the world around them are generally diminished. They have trouble making meaning. Their inability to perceive meaning mitigates against purposeful involvement, both in the real world or in make-believe.

With the emphasis in schools today on teaching primarily through telling (telling a child what to do, where to do it, and how to do it) often at work desks or cubicles lacks learning through context. As much as these teaching events are structured, children risk "learning equipment' rather than learning contexts for developing  relationships and discovering pleasure in human contact.

Play is essential for helping children with autism developing sense of self and evaluating affective states (their own and that of other). Rote learning is difficult to put in its proper contexts.

This is truly a thoughtful book. It begs the question: Do how do we use this to increase a child's school-based learning?

Here is the link:

With the advent of structured interventions in schools nowadays and the impact of testing on curriculum,  using a relationship and affective-based approach, would cause a hugely difficult problem to solve: How do we do instruction in academics?

I am working on that question right now!