Newsletter

Are You There?

I had a profound experience this week. A professional I know saw a referral of mine. I asked for the evaluation so that we could find another puzzle piece as we rebuild the path to this beautiful soul who presently cannot communicate. Instead of finding a puzzle piece, I was told that the child is 'retarded', a term I hear frequently when limited or non-verbal children are tested by psychologists for their IEP meeting. I was astounded to hear it from a therapist familiar with Autism. This personal and professional upset for me spurred this piece. It is written for all those parents and children and families living with, and advocating for, a non-verbal individual.

She is isolated behind a thick wall of inattention, self-stimulation and repetitive undirected behaviors with tremendous energy and fortitude. She is, of course, diagnosed with Autism Spectrum Disorder, and is on the far side of that spectrum at present. Our path together has just begun. It is my hope to help her core shine through that wall at some point in the near future by giving her some tools to communicate with me, with her parents, with us.

Where do we start when we interact with someone unable to communicate, and, possibly completely disinterested in the process of communication? Certainly we do not just walk away? How can we see who they are, what they think, what they want from us? Perhaps we start by looking at how behavior is language. Yes, let's start there.

Everything we do is a communication to and of something. We sit and lounge when we are tired. We tap our foot or our pencil when we are nervous or impatient. Our face often reflects our feelings when our words do not. Some of these behaviors are intentional communication while others are impulsive or even accidental. If we look at these, and other behaviors to find meaning we most likely will! Why not do this as well with a child so 'locked away' from us? I believe we sometimes turn away because we cannot find our path professionally, or, because it is easier to think there is no 'brain' behind that barrier of inattention. The idea that one is locked in is too dreadful to even consider. Oh what responsibility to think about trying to bring it out, to open the door, to search for the key. Some of us take the challenge, believe in the soul behind that door and realize that our only necessity is to try and be creative. Some programs and therapeutic techniques are directed in this manner. My understanding and 'summarization' of The Miller Method is simply that you enter into the child's behavior/activity to bring communication and intimacy to their activities...and then you gradually grow their ability-through that intimacy-by varying it and the child's ability to move forward. This particular method is one that has shown to help children on the far end of the spectrum. Soma and her Rapid Prompt Method is another process that is directed at children who seem lost to us and our interaction with them. She is a jewel, growing their self-esteem, cheering them forward to communicate, stay focused using a letterboard and creative techniques. Howard Shane at Harvard University has been researching how icon types and shapes, etc., impact the ability of a significantly involved individual from identifying one. If a non-verbal individual cannot point to an icon of a toilet or a letter, are they retarded? Or, perhaps, can their brains 'eye' just not understand the icon we found to show them? Certainly, if a non-verbal individual has the skills to start using an augmentative communication device for communicating, those experts in the field of AAC and AT can help us 'bring them out'. Yet, so many barriers are present before one is ready for this. Attention, eye motor coordination, visual perception, etc., are just a few of the factors determining the successful use of a device.

Where do I start? I watch the individual. I talk gently to them while trying to engage them visually, physically, and emotionally. I try to find something they are interested in to start the connection. I listen to their sounds and copy them. This has been so successful since sometimes these sounds are so enjoyable to them that they can recognize them even when I am making them! Once they 'hear' those sounds they often glance to me, acknowledge me. How impressive is that? Yes, there is someone there. Each trip down the path is individual, each pace different. Sometimes a visual path is more effective than auditory and other times not. The idea is that we are searching for the right one for the individual and they will show it to us. Certainly there needs to be much repetition, much drill, many attempts before there is generalization. The pace and the actual end result is not the important thing here. It is the knowledge and belief that, just because they cannot show us does not mean that there is nothing inside to show us. I believe that is our own limitations, our own fear and insecurity that keeps some from giving up the fight before it has even begun. I take my hat off to those parents that have heard 'retarded' and still moved on with the belief that their child was waiting for the right door to be opened....and they simply walked through.

On a lighter note, there is the joke of the 5 year old who never talked until the day he said 'where is the cake?' and the parents asked 'why didn't you speak before?' His answer of course was 'there was no need since everything was perfect'. Some non-verbal individuals will begin to walk down that path only when their life environment expects them to and affords them no other choice because it is simply such a struggle for them. There may just be light at the end of the tunnel. Believing there is, is just the first step.