I've said this in a previous post, and it bears repeating: Although in my sidebar I describe myself as "a mom who knows a thing or two about autism", that simply means I only have about two million more things to learn! It is a never-ending process, and boy have I learned a lot over the last few weeks!
I first started hearing about HANDLE on the yahoo group, Autism Remediation. Group members seemed excited that HANDLE fits in very well with the developmental approach RDI employs, yet addresses some of the co-occurring issues that RDI does not address -- namely sensory issues. Or at least that is the overview I gleaned, which I can now see is somewhat incomplete. Naturally all the positive reports sparked my interest, but at the same time I doubted its potential for Ryne, since sensory issues have not been a major problem for him in recent years. At least not in a way that prevents him from making progress in RDI or with homeschooling. I did, however, buy the book The Fabric of Autism to learn more about the approach, to see if maybe there were more subtle things I was missing that needed to be addressed. The book sat in my "to read" pile for six months, until Carrie invited me to go on this Florida trip. I wanted to make the most of my two-hour appointment with the consultant, so I figured the best way to do that was to have an idea of what HANDLE was all about. After having read the book and visiting with a HANDLE specialist, I can now see that this approach is about much more than just sensosry issues.
The Fabric of Autism is unlike any autism book I have ever read. First, the author and founder of HANDLE, Judith Bluestone (who passed away earlier this year), had autism herself. Her writing is similar to Temple Grandin in that she gives an insider's perspective that we parents just do not have. In fact, that is a major theme of this book: Parents and professionals are missing the meaning behind our children's odd behaviors. Things we view as problems are often the only way the child can communicate the stress his body is under, regardless of his level of functioning. And Bluestone does a frighteningly wonderful job of explaining what those stresses can entail. But instead of just giving an insider's perspective, she uses this perspective to show us how to help our children in a manner that is very different from more conventional approaches. She takes a holistic approach (HANDLE stands for Holistic Approach NeuroDevelopmental and Learning Efficiency), looking at the following threads that all overlap and work together to form the fabric we call autism: nutrition, senses (sound, light, smell), sense of safety, muscle tone, communication, emotions, formation of patterns, energy, social interaction, anxiety, sleep and boundaries. She acknowledges that it might not always be easy for us to see how all these threads are connected.
So as we continue on this journey of interwoven senses and intertwining nervous systems, know that if it were possible to explain autism in a totally linear-sequential way, others would have already done it. It is my task to try to guide you through some known and some unknown territories that loop back upon one another, and to hope I don’t lose you in the process.Perhaps that is why the book seemed so different to me -- I really did get a sense of the fear she personally knew and so instinctively recognized in her clients. There was one story in particular I could not put out of my mind.
In a way, you will be experiencing the apprehension and fear of an autistic person, entering an unfamiliar building, wondering if you are safe and if you will be able to find your way out if you need a quick escape (p.35).
Carlos was large for 13, and yet small, insignificant in his attempts to hide himself from his environment. He hunched over inside his hooded coat on a warm day, watching the floor as he moved. He had brought with him his favorite toys: plastic coat hangers and an electric cord. He crouched, his back to me, spinning the cord over the coat hangers, lost in the patterns.She calmed his fears by saying, "Carlos, I appreciate your being here and trusting me. I know it's taking a great deal of courage on your part to be in the room with me and everyone else. I hope you'll feel safe here." She went on to describe how she and others in the room would give warning before they made any movements, even just to scratch an ear, and how Carlos visibly relaxed once he was released from that fear.
He didn't say a word, although occasionally he muttered some sounds. He shuddered if my interns or I or either of his aides as much as twitched. He jumped backwards, still stooped, when the aide in front of him repositioned himself in his chair. Every unanticipated movement frightened this strapping youth. He was utterly terrified (p. 139).
I simply cannot imagine living with that kind of fear and uncertainty, but Bluestone paints a vivid picture.
Most of us with autism don’t inherently know where we end and the world begins. It’s one of the reasons we need to investigate unfamiliar surroundings – to know where we are, and to see the possibilities of where we might be or where others might be.It’s not enough to be told about these other rooms and people. We need to take our snapshots (p.50).Bluestone explains that a stress on any one of the body's systems is a stress to the whole body since they are intertwined. But in looking at the child's behaviors we can often see what systems need the most help, and when those areas are addressed we often see improvements in all areas. As any parent, I tended to be most intrigued with the areas that I suspected might be issues for Ryne. I particularly marveled at her description of her visual memory. She spoke of "mental snapshots" in her brain that enabled her to navigate through unfamiliar cities with just a brief look at a map and instantly translate verbal directions into mental maps. I can definitely see this ability to make mental snapshots in Ryne (and even in myself to a smaller degree), and while on the one hand it can be a pretty convenient skill, it can also become quite complicated............................
If we don’t feel secure in our bodies, we can’t feel secure in the world. When our conscious attention goes to protecting our bodies or simply staying in touch with our bodies, so we know that we are, then we have difficulty knowing who we are. Operating in this ethereal state, it is much easier and safer to relate to static objects than to people. People move. Children move more than adults.
How unfair that just as someone is working to establish that she is and who she is, she is also being expected to interact with pesky peers who demand that she attend to everything about them and herself at once. No wonder I flunked kindergarten but reveled in escaping into a corner with a book (p.57).
Zoning-out is frequently zoning-in, attempting to find the right snapshot that answers the question, but it is mixed up with innumerable others and won’t surface. Some of us develop the ability to categorize and create a filing system for those images so they are more generalized. This wonderful skill combined with another – to archive the photos I rarely need – has helped me process information more rapidly than most people, no matter what modality they use (p.28).Another area that can be both a curse and a blessing is the seeking of patterns in mundane events. Bluestone says most people with autism seek pattern, but they are often different from the patterns others see.
So patterns can be “good” – giving order to our world – or they can be “bad,” distracting us if we need to find order and they give us none, or directing us to associative images that no one else sees and understands (p.92).My biggest education occurred in the sections on muscle tone.
Muscle tone, if present at birth, supports most vital functions as well as movements. It is not synonymous with muscle mass or muscle strength but is the degree of tension in the resting muscle. It provides a readiness to respond to stimuli, both according to plans that have been processed and also reflexively, as the body reacts to stimuli that trigger automatic responses. Muscle tone is pivotal to so many functions, but in connection with the central theme of autistic behaviors it is frequently overlooked (p.59).For Ryne, this may very well be the biggest area of struggle we have overlooked. I am working on another post where I will go over some of the specifics of Ryne's evaluation, so I won't go into too much detail now. But I think that some of the most obvious differences between Ryne and his peers are probably related to muscle tone.
But there is much more to HANDLE than theory.
HANDLE is a neurodevelopmental approach, working to reduce the stress that causes us to be adrift and to feel so little safety when we venture across those bridges to the world of others (p. 124).The most distinguishing characteristic of the HANDLE approach is what she calls Gentle Enhancement. Treatment consists of short activities that address various weaknesses (some general activities are included at the end of the book, but more client-specific activities are assigned to those who have been assessed by a consultant). But while performing the activities, the child is to be monitored for any sign of stress. One of the most common signs of stress is amazingly reddening of the ears. This is often reported in biomedical circles as a sign of a food allergy. Of course, an allergic reaction is a stress to the body, but it is not the only possible explanation of red ears. This came as a relief to me because there have been several instances where Marc and I notice Ryne's bright red ears and we rack our brains trying to figure out what food could have caused it, to no avail. Maybe we should have been considering other types of stress. At the first sign of stress you are to stop the activity, even if the child seems to be enjoying the activity. By using Gentle Enhancement we avoid overloading systems and causing the child to "shut down." By taking a gentle and gradual approach we are able to strengthen weak systems.
Having only covered some of the highlights, I highly recommend you get your own copy of The Fabric of Autism. I feel so blessed to have had the opportunity to go to Florida with Carrie and meet with a HANDLE specialist, but I think just reading the book and using the activities in the appendices is still empowering. In fact, because Ryne did not have the full-blown HANDLE assessment, we are only doing the activities given in the book, yet I feel like we have plenty to work on right now. Time will tell if the HANDLE activities actually help Ryne, but if nothing else, I feel like I understand the autistic world a little bit better.