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", "emmahopebook.com", 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:

http://www.thevisibleparent.com/attention-seeking-to-get-our-attention-understanding-behaviors-in-a-new-way/

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:

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=Susan+Walton

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:

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=Developing+Play+and+Drama+in+Children+With++Autism+Spectrum+Disorders

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!




Wednesday, January 28, 2015

Why The Emotions of Children with ASD Matter in Schools

This is not something we talk about much in schools or preparing for an upcoming IEP meeting.  In fact, in ABA parlance, emotions are not observable or measurable, and for the most part, not mentioned. And when an ABA team is talking about the functions of behavior, the talk centers on attention, automatic reinforcement, escape or tangibles. I believe that emotions would be considered in the category of "mentalisms", those vague and nonmeasureable aspects of a child's behavior.

But to think only in terms of the four functions limits how we think about a particular child. One boy I know  is struggling about his mother's recent hospital admissions and having to live with grandparents. Surely he is sad, sometimes angry, and almost certainly confused on most days. He is a very bright boy and often 'loses it' in class when something is hard or it's something he derives no pleasure from; he'll cry, yells, refuse to comply or listen to the teacher,

And in turn, he will often get pulled out of the room and his teacher will have a stern conversation with him. If he wants to stay in her class, he will need to 'get it together' and keep a calm body, follow the directions, and in general, comply.

I'd prefer an intervention in which he gets warm support from his teacher who recognizes that he sometimes gets angry or scared, that he appears to be angry, confused, and/or sad. We could comfort him in his state of emotions, and recognize that while it's OK to be upset, yelling is not the way to get his needs met. I'd then do deep breathing with him, and offer some suggested alternatives to him for emotional support.

And since emotions and cognition are so entwined, not acknowledging a child's emotions and not giving emotional support probably does effect what s/he learns that day.

I love this blog post writer: and I love this recent blog post:

http://www.thevisibleparent.com/tuning-in-to-the-emotional-lives-of-children-with-special-needs/

When a child with ASD is upset or angry, we adults need to recognize these emotions as legitimate. I know if I got to work angry, it is very, very difficult to be really present and available to the children I serve. If I can't regulate myself, it will be really hard to help a child regulate and pay attention.

So I propose this: Let's widen the conversation in our schools to consider how a child's emotions might impact his or her behavior. Let's use emotion words with students to help them understand why they get 'stuck' in a particular pattern of behavior. "I've seen that when you think the work is too hard, you get frustrated and break your pencils or walk out of the room without permission. Let's talk about better strategies for when you are frustrated. But first let's calm down and you can tell me all about it".

We ask children with ASD all the time how do they feel, and most are limited in the words they use to describe their feelings. Maybe we as adults should be using the feeling words with out students so they becomes more familiar with anger, frustration, irritation, impatience, and not keep them limited to "sad" and "happy". It's seriously worth a conversation among the adults and he teams that support children with ASD in schools.

Sunday, December 28, 2014

Random Thoughts During School Vacation

First, I apologize for not having blogged for so long. I often wonder if anyone reads this. Then, let me say that I know that while I am home relaxing, the parents of the children I serve are not able to do the same thing. I apologize! But being on vacation has given me much time to think about services, interventions, and more.

I read an article today on the effects of structured teaching on children with ASD. The author is a British professor, and she was reviewing TEACCH methodology. (Note: she did not include ABA as structured teaching, which I thought was odd; comment if you want me to post a link to the article). And her review and summaries were interesting. She quotes Dr. Mesibov, one of the founders of the intervention, and I will paraphrase here: he described TEACCH as more of a 'Gestalt' type of intervention with an effort at making learning more meaningful. However, all of the studies on TEACCH have been only on measurable behaviors, not the 'GESTALT ', and not on the what the children are learning or the why of what they are learning.

She also comments that there is no research on the experience of the people implementing or receiving the intervention.

Regarding the latter, I think that we NEVER discuss the experience of the teachers or our students. What's it like to implement structured teaching all day? More so, what is the experience of the student who is on the receiving end?  Certainly it builds skills (or behaviors) but what skills or behaviors? And at what cost?

And that leads me to this: never before in education as I know it NOT concerned with children making meaning of what they are learning, and that's not only the case for children with autism. We have the Common Core and also state standards which pretty much dictate what a child must learn. I often wonder if our students are making any meaning about what they are learning.

And I do not like that at all.