Wednesday, July 09, 2008

Cognitive Bursts, Autism, & "Sense of Self": Digital media for intervention across all stages of development.

Reflections:
Over the past several years, I have worked closely with young people who have severe autism. At the same time, I have taken a variety of computer science, software information systems, and educational technology courses. Over time, I've integrated the use of technology, including digital photography and videography into my work. In some ways, it is still a much-unchartered territory.

Part of the reason that the use of technology for prevention and intervention has not been at the forefront of special education is that our current practices were informed by research that took place years before the Internet was a household world, before interactive white-boards, and before concepts such as "Universal Design for Learning" were taught in special education teacher preparation courses. 



 Those our 40's (or older) who did not take courses in MIS or computer science most likely were taught by professors who minimal exposure to technology. Some of us might have had a "tech-savvy" professor who was familiar with the ins and outs of SPSS on a mainframe computer.   


Teachers with 20+ years of seasoning were lucky to have witnessed a a demonstration the latest in educational software when they were university students - the Electronic Workbook!     If you studied psychology, most likely your professors were probably up-to-date about the ins and outs of the brain, but think about all that has been discovered since then!

Here are some of my observations:
I've noticed that many young people who are "on-the-spectrum" experience what I call "cognitive bursts", often around puberty, but also during the late teen and early 20's


To an untrained eye, these bursts might go unnoticed, or even minimized. Part of the reason is that the "bursts" are not demonstrated in ways that can be easily captured through traditional psychological or educational assessments. For example, one student might not be able to make a choice in response to a test item by pointing. Another student might not be able to respond to a test item because they do not speak. If the student has spent numerous years in their "own little world", they might not be accustomed to showing what they know, even if they have made significant cognitive gains, including gains in receptive language.

As a professional, I know that it is not appropriate to provide parents with false hope. I know that the tools we have for assessing cognitive growth among students with autism spectrum disorders are not adequate. For example, two students can have the same "IQ" at age 3, 5, 8- or any age, but function much differently at age 18 or 25.  This is especially true for young people who have attention problems, working memory deficits, and/or delays in language development relative to their non-verbal abilities.


My point is that we must take early cognitive assessment  scores with a grain of salt, and   ensure that there are multiple opportunities for meaningful assessment and significant intervention during other points of a young person's development.
 

In my opinion, the more severe the situation, the more intensive the intervention! 

My mantra earlier in my career was "early intervention, early intervention- the earlier, the better!". It has changed.

Over the past few years, I have come to the realization that the focus on early intervention is only a small part of the bigger picture, and for some. The focus on the delivery of services, including technology-supported interventions for a student during their early years might minimize the opportunities- and funding- for significant intervention during other points of a young person's development.

By focusing primarily on early intervention, might be missing the boat. We must do more across the young person's development through young adulthood (and of course, beyond.) Each child is different, and each brain's course of development is different. One child may be ripe for growth at 30 months of age, or at age 3 or 4. Another might start talking and initiating interactions at age 14, or begin to make sense of print at age 16!
I know one severely autistic youth who was reading at an 8th grade level at age 22, something that probably would not have been predicted by those who worked with him during his early years.

From what I've observed in special education, cognitive bursts are often harnessed by a team of perceptive teachers, therapists, and support workers, to facilitate academic, communication, and at times, social interaction skills development. While this may not be the case for each student and in each school, it really does happen.

When a student experiences a "burst", no matter how insignificant it might look on the surface, we are given a golden opportunity to fashion an integrated approach to moving the young person forward. At the same time, we are provided the opportunity to  help the student develop a more solid sense of self. For students with severe autism, this might be a key to opening up their world.

Technology can help.
Because each young person develops differently, it is important that interventions designed to facilitate this sort of growth be available at all points of development, not limited to the intensive support that is recommended for the youngest of this group.

My mantra now is intervention, intervention, intervention, and INTENSIVE technology-supported intervention during periods of cognitive growth, across the developmental stages, as appropriate.


Here is what I've been doing:

I'm spending a higher percentage of my time observing students in a variety of settings, and using video and digital photography to capture my observations. I am using digital content during my assessment process, and I'm using digital content for creating intervention activities that assist in measuring a student's progress over time.

Most importantly, I think, is that I'm
exploring ways that teens with autism can develop a sense of self, to help them build a sort of "anchor" within themselves.

One technique I'm exploring is the use video cameras to record familiar activities and settings, from the first-person point of view. To do this, I follow the student around in school, home, and/or community setting, and then tape the various scenes as if I was in the young person's shoes. My camera is a window to the student's world, as they see it. I supplement the video with digital photography of the same content, which then can be incorporated into an interactive PowerPoint or slide-show.

I also spend some time taking video-clips and pictures of familiar items and objects the student encounters throughout the day, such as teaching materials that the teachers put up on the walls, computer screen shots, video clips of favorite songs and scenes from the television that the student watches, screen shots of educational software that the student uses, and so forth.


I use Kidspiration and Inspiration for some of this work. These applications are user-friendly, designed for student use, and provide multi-modal output. There is a text-to-speech component that is great for pairing words with visual representations. At the end of the school year, I came across a great application, called UMAJIN Creative, that I found to be quite useful. (I also use some of my own prototype applications, which are in various stages of development.)

How does this work? I usually sit beside a student in a comfortable, familiar spot, with my laptop placed where it can be accessed by both the student and myself. We look at the content together. For students who are used to using a switch, I have one available.

What I'm finding is that using strategies that incorporate digital media provides a means for the student to generate more language and communication.  This is often initiated by the student!

With students who have autism spectrum disorders, establishing a connection, through digital photography and videography, focusing on familiar things is especially important. Taking the time to capture the student's world, from their perspective, is mandatory, in my opinion. By doing this, we are providing specific information that might help to answer unspoken questions that the young person has, but lacks the skills to formulate or articulate - for example: 



"Who am I, and what is my relationship to this physical world?"

By taking this approach, the adults - teachers, parents, assistants - who are involved with the student, can work to build a solid scaffold for further learning and interaction. Bit-by-bit, digital content - pictures, video clips, can be built into the process to facilitate social awareness and social-emotional interaction skills. By learning about familiar people, how they "tick", and how one should go about interacting with these people, the student might gain a sense of self within a social context. We can help them answer the question we all have, at one time or another:

"Who am I, and what is my relationship to this social world?"

Note: I am actively searching for articles related to my topics. Please leave a comment, along with links and names of researchers if you have any information about this ! Personal observations are also welcome.)

Update:

See "



Minna, from SymTrend, left a comment on this post:
"SymTrend is PDA and web-based software for recording behavioral observations about children with lower functioning autism. Those who are higher functioning or Aspergers can use our system for self-monitoring and to get guidance when they are in situations that challenge them."
http://www.bricklin.com/log/symtrend.htm

Here is my previous comment about SymTrend:

"
The beauty of SymTrend, in my opinion, is that it helps people develop self-monitoring skills through providing a means of analyzing data that is gathered frequently. From what I understand, through interaction with the software, the student/client establishes a better understanding of themselves, and also and understanding of feelings, triggers, reactions, and coping strategies. A rich amount of data is collected that can be helpful to treatment providers, or special educators."

For more information, see Minna's comment to this post. My previous post about SymTrend includes a video about SymTrend. Also, visit the SymTrend website.


4 comments:

Minna said...

I run a website with tools for individuals on the autism spectrum (http://www.symtrend.com). SymTrend is PDA and web-based software for recording behavioral observations about children with lower functioning autism. Those who are higher functioning or Aspergers can use our system for self-monitoring and to get guidance when they are in situations that challenge them.



Basically our system involves having the person self-monitor social interactions, emotions, and organizational tasks simultaneously with a coach or teacher. Both sets of ratings are charted on the same page. The coach and student then discuss the discrepancies, use the charts for detection of triggers or challenges, and set goals for changes in performance. The PDA is used for the ratings, to provide reminders and general hints, and to guide their way through challenging situations. The tool has also been used in doing cognitive behavior therapy with individuals with anxiety. Many students with Aspergers have issues with anxiety so the CBT applications help with this as well.


You can watch a video about our tool on our home page (Click on the photo in the upper right of the home page under the heading "Watch a video". Our work been researched with a grant from National Institute of Mental Health. We had one grant that was completed in 2006 that studied the tool's use with 7 students with Aspergers in a homogenous AS classroom. We won a second grant and will be testing the system with 50 AS kids who are in mainstream classrooms in MA and NC. The "News" link on the home page directs you to links about our research.

Lynn V. Marentette said...

Minna,

I updated this post and included a link to my previous post about symtrend.

Howard Johnson said...

Lynn;
Great ideas on 2 counts.
1. There is a need to better use existing technology in new ways to effect everyday situation and throughout the various disciplines. The extent of my training (in the 90s) was also relegated to mainframe SPSS commands.
2. Your autism interventions seemed focused on people developing social interactions on their own terms and innovating on their own terms. By the way; I don't see a lot of this type of thinking in the autism literature. Where are your ideas coming from.
Thanks again for the post!
Howard

Lynn V. Marentette said...

Howard,

My ideas come from my experience working with young people with autism, my clinical "intuition", the words of a few wise and gifted professors who are probably long since gone, and what I've learned through integrating technology in my work. I also have two close relatives who are on the spectrum who have provided me with insights over the years.

I'd like to see more research to be done that focuses on older teens and young adults. In order to ensure better outcomes for education and treatment, we do need to explore new ways of using existing technologies. We also need to engage in collaborating with those who are developing emerging technologies.

I believe this is an urgent matter, since the numbers are growing significantly. Are our high schools ready for the upcoming influx?

We also need more people who are prepared to work with teens and young adults with autism spectrum disorders, in terms of teachers, language and occupational therapists psychologists, behavior support specialists, related services providers, vocational rehabilitation specialists, and parent educators.

I am hoping that autism researchers will take note of my observations.