Autism Consulting Service

for autism, Asperger's and PDD-NOS

Impact of the Tactile System

The Tactile System is found in our skin, the largest organ of the human body. Acute sensitivity of the tactile system affects our interactions with others and with the world at large in many different ways. These include:

• our willingness to be physically touched by other people. If it is uncomfortable, we avoid it, and in avoiding it, limit the production of the hormone oxytocin, a hormone whose presence increases our desire to socially interact.
• our feelings of safety when we are in the presence of other people, especially those who do not understand that we are avoiding their touch because it is too overwhelming for us, not because we have something against them personally.  This leads to heightened anxiety. It is especially hard for children as they are touched more by both adults and other children without warning than are adults.
• the clothing we wear.
• our ability to sleep comfortably....or, in other words, throughout the night.
• the fine motor tasks that we are able to do such as writing, dressing, eating with utensils and so on.
• the gross motor tasks that we engage in.

Handwriting:

Since the tips of our fingers are the most tactile sensitive part of our bodies fine motor tasks become a problem for many on the autism spectrum. This is especially true for an child or adult who is forced to use the tripod grip when writing. There an awful lot educational programs in which it is believed that a human being needs to use the tripod grip to write. This is a fallacy. We can write in sorts of different ways, including using our mouths and our toes if necessary.

Children with autism who have the extreme sensitivity in their fingertips can develop unique ways to work with pencils and pens that allow them to "write" without having the pain on their fingertips. An examples is demonstrated in the photo below. If educators allow children to write in a way that is comfortable for them, they will learn to print. However, if educators focus instead on how the child is holding their pencil and force them to use tripod grip, the child will often give up completely.  It is just too uncomfortable to make the effort. How can anyone learn when they are forced to deal with pain all the time?

 As children and the body matures, the tactile sensitivity may decrease to the point that the individual chooses to use the tripod grip on their own.  Others carry on their unique style of holding their pencil for the rest of their lifetime. The question we must ask ourselves is "what is important?". The sharing of information through the written work or the specific way a tool is held.

This is also the question that must also be taken into consideration when one considers the how neat a child is writing. One of the reasons that the tripod grip is used is that is the most effective way to hold a pencil and write neatly. However that is only true for those of us who do not have pain in our fingertips when writing. Is that fact that the child has shared their knowledge with us through the written word more important than the shape of the letters? I think so.  The tendency for children with autism to be perfectionists compounds this problem, especially if the educational focus is on neatness rather than the information shared. Anxiety will increase and the chances that the child will give up and not try are compounded by teachers who insist that all written work be neat. Again this may improve through maturity although I have adult friends on the spectrum who still cannot write or print as neatly as they would like. This doesn't mean I don't enjoy receiving letters from them. It's the sharing and content that is important to me.

One must be aware that printing is easier when one has sensitivity of the fingertips than handwriting. When we print we can loosen the grip of our fingertips on the pencil with each letter, even at times during the construction of a single letter. This leads to a decrease in anxiety build up. In direct contrast handwriting entails constant pressure on the fingertips for whole words at a time. Again we must question what is the most important: the information shared or the type of writing used. Accepting printed work instead of insisting that a child move on to handwriting is often the best choice.

Note the difference in neatness in the signature at the right. Tamara claims that her ability to write neatly is very frustrating for her. She also claims that the longer she writes the messier her handwriting gets (the build up of tactile stress over time). This didn't make any sense to her until I explained how tactile sensitivity affects her. She can't figure out why teachers will not allow her to print.

For some of our children, the level of sensitivity in the the fingers means that holding writing tools is impossible. In these cases we need to find another way of sharing written information as soon as possible so that they are able to share their knowledge with us and keep up with their peers at school. The computer has provided a method of writing that allows people to type out information in order to share their knowledge with less pain to the fingertips. I believe that we should introduce our children to computers as soon as possible so that they may have access to this method of writing when they reach grade if holding a pencil is too difficult for them. Thus I have 2 year olds on the computer, first playing computer games based on a subject they are interested in. As time goes by one introduces the need to type in information such as passwords, etc. in order to access the computer. By the time they are in grade one they can go to school with a laptop, if necessary and are able to share their knowledge with the teachers. On the right meet Craig, one of my clients who was introduced to the computer at the age of 3. By the time he reached elementary school, fully included in a regular classroom, he held the position of computer whiz in his classroom. What a joy to be celebrated for being the "best" at something.

Other children have such a high level of sensitivity or motor planning difficulties that make even using the computer impossible. In these cases we move on to the use of facilitated communication. Facilitated communication (FC) provides physical and emotional support to those who need communication aids but do not have the motor skills to successfully do so independently. The aim of FC is to provide support to the user so that they can share their thoughts, knowledge and feelings with us in a way that is as meaningful as possible. It is not a "cure" for autism but a alternative method of communication.

Facilitated Communication (FC) is a technique which allows communication by those who were previously unable to communicate by speech or signs due to autism, mental retardation, brain damage, or such diseases as cerebral palsy. The technique involves a facilitator who places his/her hand under that of the individual's hand, arm or wrist, allowing the user to point to letters, words or pictures on a board or a keyboard. The user pulls the hand forward to point and then the facilitator pulls the hand back so that the movement can start again for the next letter or picture. This allows the user to communicate through his or her finger by pointing to a letter, word or picture, spelling out words or expressing complete thoughts. Some facilitators help the individual use handwriting to communicate. Others allow the user to hold on to their finger and point with it. Through this process, previously mute individuals create prose and poetry, carry on high level intellectual conversations, write exams or simply communicate their needs and feelings. For those who have been silent so long, this gift of communication is almost unbelievable.

Although there are many documented instances where facilitated communication was used by individuals in a variety of different ways throughout the years, it is Rosemary Crossley of Australia who is given credit for bringing this method to the attention of the world. Her work was brought to the United States by Dr. Doug Biklen of Syracuse University, NY where an Institute for Facilitated Communication is located. There has been a lot of controversy surrounding this method of communication brought due to skeptics who do not believe that people who do not talk and cannot be tested easily are intelligent. However, those who stood up to the criticism and insisted on sticking by those on the spectrum have demonstrated clearly how powerful this method of communication is. Many who began typing with full support in the beginning are now able to type independently, Some now speak verbally. Others now only need a hand on the shoulder or the elbow to fc.  And there are those who still need full support. This is okay.

I believed in fc as soon as I heard about it in the early nineteen nineties. Why? Because so much of what was being shared at the time matched what I was collecting from individuals on the spectrum who could either speak or write independently. Their words expressed the experience of over stimulation from sensory overload at an extreme level as compared to what I had already found. For example: The most terrifying and confusing of all is touch, which seems intense. reality reappears as strident burning if my clothes are new or tight or the wrong fabric. When starting to facilitate, I had to weaken my response to being held by the hand and I often needed to get away from all of the simultaneous stimulation. I learned to accommodate the touch of familiar facilitators, but the need to escape stimulation explains why I sometimes walk away or make another self corrected noise to focus myself. (Jeffrey Powell, Jr.) This, at a time when very few people were paying attention to the impact of sensory overload on autism. It had to come from the person on the spectrum as the facilitators did not have this information about autism. Although I am not a very effective facilitator as I get too excited when I do it, I have had hundreds of wonderful, enlightening conversations through fc, throughout the years. It's not an easy way to communicate. It takes a lot of time and energy and it is only available when the facilitator is present but it definitely is more powerful than sign langauge (not that some people with autism do not excel at this, but too few of the rest of us can't understand it)  or PECS (pictures) which are limited to simple wants and needs. 

The criticism of facilitated communication in the early 1990's almost led to it's demise as a communicative aid for those on the spectrum. Many voices that finally begun to speak out were silenced. Hundreds of children who could have been using this technique throughout their years at school have graduated without a voice. It's a horrendous mistake which continues on, spread by so called well meaning people who have never made the effort to see anyone fc or have a conversation with anyone using it. This is a travesty against the human rights of those who do not have a voice. Don't let it go on any longer. 

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Last modified: 11/12/09