Friday, November 14, 2014

More Thinking Outside The Box

Last weekend I went to the International ICLD Conference; ICDL is the organization that developed and trains people in DIR/Floortime (The Profectum Foundation also does this). Then last night I went to a lecture on some facets of genetics and autism.

I just love how these two experiences open my mind to many possibilities. The genetics researcher mentioned that there is an intervention that improves IQ in 20-50 % of children and that intervention is ABA.

Yes, he said that. I responded with a comment that there are other interventions and mentioned DIR/Floortime. Well, I had several people come up to me after the talk to see if I've had experiences getting school districts to accept DIR/Floortime. I said no, but we are working on it.

We also had an advocacy group at the ICDL conference. I mentioned that I know young people are getting their BCBAs so they can have a job in autism where they can get paid. So far, that is generally not true of Floortimers. The group was mentioning media packets, going to legislators and other politicians. Apparently ICDL has also hired a lobbyist, who has been influential in California. We'll have to bring him or her to Massachusetts!

Me, I sent a proposal to my top level boss to create a developmental ASD kindergarten next year. And I created a professional goal to introduce developmental concepts into our ASD classes. And that is really what I want to do in my current position.

But how do I do that when our entire team thinks in terms of antecedents, behaviors and reinforcers? DIR is not a single-use strategy, but is rather a long-term commitment to a method of being with kids. So I could use any ideas from anyone about how to go about this. I'd love to get a group of DIR providers to work with me on advancing this idea.

Is there any way we can talk about this?

Thursday, November 6, 2014

Some (Potentially Controversial) Comments About Ethics

Lately I've been thinking a LOT about ethics in the field of autism. I am doing this because I am a BCBA AND a certified Floortime Provider. There are those who say possessing both certificates and actually implementing Floortime is "unethical".

Now, I know that the Guidelines for Professional Conduct written by the Behavior Analyst Certification Board state such things as the Behavior Analyst should be aware of the scientific nature of ABA, hold true to those beliefs, and implement ABA in the most ethical ways.

The ABA guidelines also state that the Behavior Analyst derives knowledge from science.

BCBAs sign a form that states (and I am paraphrasing here) that we will only use and implement evidence-based measures. And I've come to learn that this means ONLY studies that are based on the ABA principles.

So, how can people conduct research on other interventions when they are bound by the restrictions of ABA-based research?

I happen to know that there are 26 studies in the literature that capture the effectiveness of relationship-based interventions.  However, most likely the ABA-only proponents would probably not include most of these articles because they are not designed with ABA in mind.  I also happen to know there are a multitude of scientific articles about child growth and development through relationships and experience. But because this research is not based on antecedent-behavior-consequence, it is not given any credence by the ABA-only advocates. I wonder what an ABA-only advocate would say about Piaget's research on language and cognition?

That said, I believe in the use of both ABA and relationship interventions. With the circular reasoning of BACB guidelines,  a Behavior Analyst cannot, by definition, learn, think or add skills to his/her repertoire that do not fit within these Guidelines.  So most, if not all, behavior analysts only read the ABA literature, only know about ABA interventions, and do not think outside this "box".

This "box" ignores child development. Children learn through experience, through relationships, through play, through interaction. If their experience of interaction is only DTT from when they are 2 or 3 years old, that is quite a one-sided set of experiences. The adult tells them what to do, what to point at, what to say, and how to do all these things. So ABA-only, by definition, ignores the life of the child outside ABA as not being important.

There are important skills that can be taught using ABA. What I have experienced in my career is that there is more than one way to teach and reach a child.  Some kids thrive on ABA; some kids don't. And for the ones who don't, we as professionals must be alert to this and find other ways to reach them.  This is, indeed, in my opinion one of the limits of ABA. It's as if the Guidelines were intended to keep Behavior Analysts from having a different experience, from learning something new, and growing in their careers.

So what is wrong with thinking outside the ABA box?  I chose to do that and it informs my practice. I choose to expand my knowledge and thinking about children with autism and how they grow. I also choose to provide parents with an option of how they want to treat their child. Not all ABA is bad, or foolish as some on the child development side would and do think. When are we going to stop arguing over who is right and find ways to reach each individual child?

Thursday, October 9, 2014

A Little About 'Scripting'

I know, I know, I abandoned this blog much too long ago. There are times when I used this blog to think things through, and there are times when I actually am too tired to do that.

But tonight, I've been thinking about the use of 'scripts'. I've just finished reading, "Life, Animated" by Ron Suskind. It's the story of how he and his wife 'found' their child, who regressed into autism at about age 2.

When he was first diagnosed, Mr. Suskind states that they tried ABA and Floortime, but did not see any progress. They may have tried a few more things also. Eventually they got him into a private school for children with learning differences, and together the family watched an awful lot of Disney animated movies because their son Owen loved them. He scripted a lot of phrases that sounded like they were from these movies, but they could not decipher exactly what he was saying.

At one point, Owen was saying something that sounded like " Juice yer voys" over and over. Eventually, his mom, Cornelia, recognized he was repeating a famous line from The Little Mermaid:
"Just your voice". And eventually they recognized that the lines he repeated over and over had meaning for him. He used phrases such as "Just your voice" as a way of trying to communication with them, as if saying over and over "Just your voice" was telling them he wanted to talk. As time went on, they began to recognize phrases that signaled anxiety, fear, fright, happy, sad. and they would respond to his 'scripting' by following his script with the next phrase from that dialogue. And eventually, they began to comment to him how they thought he felt when he was saying these phrases. They learned to 'interpret' his speech as if it were real communication and not just a script. Over time, and after doing this hundreds of times, he began to reflect on his own use of each phrase. He was using "just his voice" to communicate that he was trying to talk to them. He didn't have the words to explain that he wanted to talk, and eventually he began to expand on his simple phrases, combine phrases from different movies, and engage in meaningful communication. As an adult now, he is aware that in certain situations he will script and manage to tell what he is really trying to say.

So the family never 'banned' his Disney movies, never made him earn them for 'doing his work', but they incorporated these well-learned lines into his academics, social skills, and communication. He told them that he was a 'sidekick' and not a hero, and that the job of 'sidekicks' was to support the hero.

Well, this does sound a little like DIR/Floortime, in which you support the apparently nonfunctional scripting and try to make meaning from it. Sometimes I simply repeat what the child is saying with rich affect, and even the littlest ones suddenly look at me as if I am speaking their language. And maybe I am!

So it was with great interest to me to read this post on the many functions of scripting and the uses people with autism have for them:

http://musingsofanaspie.com/2014/10/09/echolalia-and-scripting-straddling-the-border-of-functional-language/

And then I followed up with this post:

http://emmashopebook.com/2014/10/09/scripts-a-communication-bridge/

So perhaps for some kids we might try imitating their scripting and/or giving it meaning as a means to begin to tease out true, intentional communication? And perhaps if they see that their scripts have a meaning for the listener as well as the speaker, intentional communication will grow.



Sunday, September 7, 2014

A Great Resource

Someone in my Google Group sent a link to a set of videos called, "Ask An Autistic". What a wonderful idea! This young woman, Amethyst, describes stimming, echolalia,  and many other autism-related issues based on her point of view as a young woman with autism.

And in this particular video, she comments on ABA and then describes DIR/Floortime. Amethyst states that she thinks ABA should not be used with anyone (Well, I can't really agree with that, although I've made it clear several times that I do not believe ABA should be the only intervention) and then does on to talk about Floortime.

https://www.youtube.com/watch?v=qkd0I3lTvO8

I am going to make it a point to watch all of her videos. I find that the insight gained by listening to people with autism is expansive and really starts me thinking about how  we approach teaching and being with people on the spectrum.

In my own experience, working for about an hour a week at the most using DIR with children in sub-separated classes results in limited but useful progress. For many of these kids, I dream about seeing them in a full-day, school-based DIR program. I know that is very hard to imagine, (and it is also difficult for me to imagine), but I'd love to see a school where children are not seen as 'having behaviors' and where we limit our adult thinking about the functions of their behaviors in strictly behavioral terms. Can't we successfully think both about specific functions of behaviors that include pain, medical issues, hunger, anger, boredom, and many other issues that are functions of our neurotypical behaviors?

Outside the box? A more comprehensive approach? Yes, let's try!


Tuesday, September 2, 2014

Back To the Blog

Well, I know I took an unintentional vacation from this blog.....since July 5, 2014.

And it was good. The vacation, I mean. I am hoping to start some interesting discussions about treatment and intervention.  And points of view!

So, I really would love folks who read this to comment. And argue.  And present some different opinions....

I stumbled  upon this little video which I like a lot.

Check it out:

http://op-talk.blogs.nytimes.com/2014/08/29/look-at-life-through-autistic-eyes/?_php=true&_type=blogs&nlid=67532143&src=recpb&_r=0


Saturday, July 5, 2014

A Powerful Mother/Daughter Pair

Wow. I can't stop reading this blog. It makes me wonder if we are severely limiting our students by not trying typing with them (since the evidence-based zealots refuse to think out side the box!).

Where would the harm be in trying? In getting trained in Soma's method? If it can work for one child, where is the harm? This mom is not touching her child while she types, so we can be sure the words are the child's. I have met people who type independently to communicate; so what if they started with someone holding their arms back and providing support, eliminating frantic, impulsive and random typing? Isn't communication  something we have to learn?


http://emmashopebook.com/2014/07/03/emmas-presentation-at-the-icare4autism-conference/


Tuesday, June 24, 2014

Excuses, Excuses

Well, apparently I have not attained my goal of posting regularly.....I have my reasons, which included a week and more of household upheaval while workmen installed new wood floors, a trip to Connecticut to see a Bruce Springsteen show,

(And I FINALLY won the lottery to stand in the Pit, right in front of the stage, so I was THIS CLOSE to the guy....it was a lot of fun!)

and then hospitalization and 14 days of IV antibiotics for an infection that started as a UTI and became an infection in my kidneys and blood....and that infection sapped my strength and energy, so getting through the end of the school year was a challenge....

But I did. And one thing I learned about working with the kids with ASD....I do my best work when I am fully present with them, not distracted by having to take notes or data, not concerned about if they were making progress toward my specific goals, but when I can delight in them in the moment, respond to them honestly and intuitively, and be WITH them (with uppercase letters!).

And this experience flies in the face of IEPs, writing annual goals and objectives, taking data to determine if they have met their goals and objectives, and pre-planning what it is they are supposed to learn. What if teachers were absolutely present with their students, responsive rather than directive, following up on the child's initiations rather then telling the child what to do and how to do it? What would that education be like for our kids with ASD?