Struggling with Naurobiology

Hi all,

I am home for the summer recuperating from shoulder replacement surgery. As such, I have a rather large agenda. One item is to read neurobiological literature on autism to try to shore up my very limited understanding. Another is to read more about perspective-taking, joint attention, and the research supporting/refuting DIR/Floortime. And so today I read and took notes on several articles, most of which I had to go back and forth between Google to find definitions/examples for some of the brain related words. But! Here is a beginner's view on some of this.

Christpher Gillberg has presented a summary of the known literature on where in the brain is autism? Autopsy and imaging studies suggest: cerebella dysfunction (cerebellum: a region of the brain that plays an important role in motor control, cognitive functions such as attention and language, and probably in some emotional responses such as regulating fear and pleasure responses). Within the cerebellum are Purkinje cells, which receive more synaptic input than any other type of cell in the brain. Purkinje cells use GABA as their neurotransmitter, and exert inhibitory effects on their targets. Bauman and Kemper (2005) have demonstrated in their post-mortem studies that children and adults with autism have significantly reduced numbers of Purkinje cells. However, in other post-mortem studies,  additional abnormalities have been found in other areas of the brain, often in the cerebellum.  The reduced number of Purkinje cells has to have happened prenatally, before 28-30 weeks gestation. Minshew and Williams (2007) characterize autism as a "polygenetic developmental neurobiologic disorder with multiorgan involvement", although it predominantly involves the central nervous system. They state that autism is primarily a disorder of connectivity, involving hemispheric connectivity. It appears that deficits in high-functioning persons with autism occur in processing that places high demands on integration of information and coordination or multiple neural systems. Intact abilities share a dependence on low information processing demands and local neural connections.

So - autism is not a disorder of one area of the brain, or even of two. It appears to involve the connections made between areas of the brain, that demonstrate problems in central coherence, executive function, and aberrant reading of facial expression. "Polygenetic" refers to the current research that indicates many genes appears to be affected at different levels of expression and at places on the genome. Although there is a heritability component, determining the inheritance aspects are far less simple than  what we know about Fragile X syndrome.

Gillberg also references frontotemporal lobe dysfunction suggested by autopsy studies, functional imaging studies and neuropsychological studies. More on that later!

Beautiful Essay

I have my friend Shirley to thank for this lead. This is a fabulous essay written by a mom of a child with severe disabilities, and also a charming personality....reading it humbled me
totally.

http://jenniferlawler.com/wordpress/

Feel free to post your comments.

Susan

On the Death of a Mother and Advocate

Hi,

I just read this morning in her daily blog ((http://autism.typepad.com/autism/) Kristina Chew tells her readers that Clara Claiborne Park has died. Clara was the mom of Jessy Park, whose life was chronicled in two books, "The Siege: A Family's Journey into the World of an Autistic Child" and "Exiting Nirvana: A Daughter's Life with Autism". I remember "The Siege" vividly, as it recounts the first 8 years of Jessy's life. "Exiting Nirvana" chronicles the adulthood of Jessy, her job, her social skills, her talent as a painter, and as the recipient of her mother's love. Clara was a great mom, a vivid writer, and a person who tried very hard to see the world as Jessica perceived it. Both of these books should be required reading for anyone in this field.

On another note, I am now at home resting from my shoulder replacement on July 12. I am reading "Infant/Maternal Mental Health, Early intervention, and Relationship-Based Therapies" A Neurorelational Framework for Interdisciplinary Practice". I am also reading several articles on the neurology of relationships and kids on the spectrum. These are BIG READS and I hope to comment in the next few days.

More again on DIR/Floortime Institute

Sunday, July 11, 2010

Today will be a short entry.

I am impressed by the kind of conversations that occur here on a regular basis, conversations filled with love and hope for the children. There is a powerful optimism here about treating children in a positive, developmental, fun manner. This work is built on the research in attachment neurobiology, an area in which I will read deeply this summer. It is not a literature that lends itself to research on specific skills, discrete skills, single-subject research that is the domain of the ABA literature and world. Yet it is measurable, and there is research to support it, research that is continuing and much needed.

My question and task is: How to marry the worlds of ABA and developmental approaches? I do not believe that we should throw out ABA...there is too much benefit to it, too much it has accomplished. And yet ABA is limited in what it can teach a child or a family; it is time for addition of more approaches.

More DIR Thoughts

I am about to head into the 4th day of this DIR/Floortime conference/institute. Last night I experienced "information overload"....one of the presentations I attended was a comparison of traditional speech therapy methods and developmental interventions. Of course, given that the video clips were chosen by the presenters to give a 'nice' picture of developmental therapies, the contrast was stark. The traditional therapies were stilted, awkward at best, laughable at worst...and the developmental therapies were lively, fun, engaging, warm and friendly. My first reaction was that the developmental approaches were clearly successful with the younger, early developing children, and harder to document for the older children.

I did attend two fascinating sessions that I will report on later, due to my need to re-read my notes to fully understand them: (1) A session on the neurobiology of attachment, and the neurobiology of autism, showing a great deal of overlap, and (2) a summary of the research supporting DIR/Floortime, which I will also take some time to summarize. I will just say here that the research on DIR/Floortime is much more limited than that on ABA, but the two types of research are decidedly different.

One thing is for sure: with high affect and child-directed activities, the engagement (participation) in activities is much higher in DIR/Floortime than in traditional ABA. That said, a talented teacher using ABA and creativity can get high engagement from his/her students. It is also much easier to document specific skills progress in ABA, which is very fulfilling (reinforcing) for the teacher and families. Which to use? My thinking right now is that it is not an either/or phenomenon, but a marriage of approaches. At the moment, I don't see DIR replacing ABA anytime soon, although the videos from DIR schools are very compelling.

One thought: If childhood is supposed to be fun, then go with DIR/floortime. If childhood is supposed to be about acquiring discrete, specific skills, then go ABA.

More later!

Thoughts on DIR from the Institute

Hello,

I have a few extra minutes today...this institute is hard work...from 7:50 AM to 10:00 PM! I have many thoughts but will summarize a few here:

1. I've asked the question, "When do you stop Floortime?" and the question has been pushed aside. The speakers say there is no age too early, and no age too old. I've seen videos with Floortime with 6 month old babies. But, I have not seen videos with 15 or 20 year olds at home. On Saturday, I think, there will be a presentation of a DIR school with an 18 year old. Why am I concerned about stopping Floortime? Because with kids in school, who get in-school services, it takes time away from their academics...and the school day is short enough. And I am doing home services with 14 year olds in middle school, and I think they need to be in a group with other kids...and I do not have other teenage boys in my back pocket. So the context for the services is really important.

2. I have met other providers who use DIR/Floortime as therapy in their counseling practices, seeing kids once or twice a week. That is similar to my situation, of seeing kids a few times a week. But the research is based on DIR/Floortime 8 times/day at home with parents with young children...where is the research on twice/once a week?

3. Techniques: I've been looking for a series of techniques, and I've learned that it is all up to the individual. That's fine, but where is the treatment fidelity? How do I know that what I do is similar to what others do? How can there be research on DIR/Floortime with multiple providers when we most likely each do it differently?

4. What I like about DIR/Floortime: I like the emphasis on relationships with kids and having fun. I believe firmly that teachers/providers need to be in a relationship with the kids, and that this is hard for being with children on the spectrum. I'd like to be able to define 'relationship' better. And having fun: this is the essence of childhood, and it seems to be something that children on the spectrum miss out a lot...and guided fun is essential to learning for all children. Floortime is largely, it seems, interpretive, and relies on the child development literature. The theory seems to be that brain development relies heavily on a student's experience, and if children with autism do not have those experiences, then their brains will not develop properly. I'd like to see data on that.

When I return, I will read whatever I can on brain development and children with autism. More on that later!

DIR/Floortime Course, Potomac, Maryland

Hi all,

I've been absent from blogging for a while, thinking about what to write and how to use this blog. I enjoy reading articles and summarizing them, passing on information, but have begun to think that's too impersonal. How to make an autism blog more personal without compromising the content, particularly when I am not an autism parent? That's the main question I have right now.

I am in Potomac, Maryland, attending the DIR/Floortime Course. I want to learn as much as I can about this method, its science, its techniques, its results...Yesterday was a bit of a blur, as I travelled from room to room, trying to figure out the locations of all my groups, meeting new people over meals, listening to the speakers. Today I will take more notes and blog tonight.

I turned to DIR/Floortime because while I love ABA as a technique, a tool, a method for increasing skills in children with autism, what was missing to me was the emphasis on becoming involved in a relationship with the children. I've seen terrific teachers using ABA AND also engaged in laughing, enjoying, smiling and playing with the children. I've also seen bored teachers simply 'running the programs', then leaving the children alone to wander the room unproductively. There's got to be a better way. When you teach children, you've got to like them first of all...and like to be with them. That's true whether the children are neurotypical or have ASD. So I am drawn to the relationship piece of DIR, and am busily trying to define 'relationship', 'capacities', 'development'.

If DIR/Floortime can enhance a child's development, increase his thinking and relationship skills, teach parents to have fun with their children, then I am all for it. To see a child initiating play, communication, action with an adult or even preferably with another child is a gorgeous thing. So we shall see what happens today!