Communication

First of all I would like to preface my comments on this symptom with a short description of my philosophy on communication, because it makes a huge difference where one is coming from. To me, communication is the passing of information from one person to another so that it is shared. Thus, when I am working with anyone, I am not interested in a specific method of communication, but use everything and anything that the person is able to share with me in any way they use. My personal communication disabilities are not being able to speak or understand any other language than English and not being able to use my vision to understand sign language, no matter how hard I try, or to keep up with the visual input of the very fast typists on the letterboards. These limit my ability to communicate with some people, but we usually find a way to share, in spite of my limitations. My goal with people on the spectrum is to find communication methods that works for the individual I am trying to communicate with so that they can share their needs, their thoughts, their feelings and their knowledge with me. The goal is communication, not a specific method of communication. And since they have what is termed "an impairment in communication" we concentrate on what works for them, NOT what I, or any other typical person needs. One wonders at times who are really disabled in this world.

Steps for communicating with anyone on the autism spectrum:

1. Lower your voice at all times when talking to them. Their hyper acute hearing often distorts our voices so that they cannot hear the words clearly and claim that they sound no different to them than any other noise in the background. Don't whisper. The "sss" sounds are very uncomfortable when whispering but talk at a level just above whispering. Always make sure there are no noises between you and their ears that will interfere with your message when you are speaking to them. Don't ask them to speak louder, they are likely talking at a level that is comfortable for them. Meet it. If they talk very loud, this is likely how they hear you speak. Tell them it hurts your ears, and demonstrate talking softer. This is not about them trying harder. It's about meeting their auditory needs.

2. Share the differences that they experience in life with them so that they get to know their own bodies and how these bodies react in our world. Tell them that they hear better than the rest of us, see better, feel things more on their skins, and have stronger senses of smell and taste, and that this makes the world uncomfortable for them in ways that it doesn't make it uncomfortable for us. They know this about themselves. They think we are like them and don't understand how we are able to cope with so much input so well. What no one tells them is that we are not coping with the same input, because our bodies are different than theirs. Sharing this information with them as early as possible, gives them the freedom to accept themselves as the wonderful people they are instead of reaching the point that they believe that they are bad, crazy, broken or mentally retarded: the very clear messages that they meet in the world every day of their lives.

3. Do not put them in environments in which they have to endure high levels of sensory stimulation. Typical day cares, preschools, and so on can be devastating to these children. If this is necessary, respect their use of restricted, repetitive and stereotypic behaviours as communication that they are in trouble. Allow them to use these behaviours to decrease the level of anxiety they are feeling. Talk to them about how well they are coping in a very uncomfortable world. Make sure that they have somewhere to withdraw from the stimulation so that they do not become overwhelmed. The development of the brain from birth through to grade one depends completely on sensory input. The safer sensory input is for these children, the less their brain development will be based on being overwhelmed with sensory stimulation. In the meantime, don't lock them away from the world in order to protect them. They need to be part of our world as much as any other child. Be flexible with the timing and the choice of environments instead of limiting where they go. For example: I live in Edmonton, Alberta, Canada, which boasts that it has the largest shopping mall in the world, a mall that has all sorts of wonderful attractions that go beyond shopping. By taking our children there before 10 AM in the morning we can share this mall with them in a way that is safe for their bodies and allow them to get used to it. We would never, ever think of exposing them to it in the midst of the craze of Christmas shopping. That's torturing them for no reason at all.

4. Do not insist on eye contact when you are speaking with a person on the autism spectrum. For some, it causes great anxiety as they look into our eyes for they learn far more about us than they care to know. The eyes are the window to the soul. For others, using more than one of the sensory systems at a time makes it impossible for them to concentrate on either. In these cases it is easier to talk side by side looking out at the world than at each other. And others need to watch your lips in order to understand clearly what you say because it helps clear the auditory distortion. Moving their gaze to your eyes means that they will miss what you are saying. Each person is an individual and will let you know what works best for them IF you pay attention. Respect their needs. If this still bothers you, make the effort to measure the amount of direct eye contact that you have with other people when you are talking to them. It's not that big a deal!

5. Accept any form of communication they use, when they use it, and don't correct them or try to fix it in any way. Respond immediately. This gives them the impetus to continue to communicate. Constantly being told that their communicative efforts are wrong and have to be fixed makes them give up on communication, lowers their self esteem and results in a deep sense of failure and rejection. Would you want to talk to anyone whose immediate response to anything you said was "speak in a full sentence" especially when it was difficult to get one word out?

6. If they speak in garbled tones, be aware that this is how they are hearing you speak. This is the language they are learning from you. Take responsibility for your own limitations and admit that YOU don't understand, in a soft voice. You taught them how to talk this way. Now you are expecting them to reply in a way that suits your needs. In other words you expect them to listen at one level, and then respond at another. It's like being bilingual. Amazingly, many of them actually do master this in spite of our lack of understanding.

7. If they use echolalia assume that the words are an attempt to communicate in the present moment and respond. It is easier to use words or phrases from someone else than to come up with ones own when one is very anxious. You may have to watch the source of the words and phrases (television shows, videos, etc) to really understand the meaning. For example, one child shared phrases from her favourite bear movie to share her delight in the snow coming down around us. A young man used words from a commercial to join in on our conversation about the upcoming birth of a grandchild. A child used a phrase from a Disney movie to share the grief he was feeling in losing his long time community support worker. By accepting echolalia as meaningful in the moment and knowing where the words originated so that they made sense in the present context, these children were able to be included in the social interaction that was happening around then. If we had ignored their efforts or defined them as jargon we would have missed so much.

8. Give them choices in a way that they can respond. Put their clothes out and let them pick up what they want. Put out two juices and let them take the one they want. If they don't choose either, open the fridge door and offer everything and see what happens. It's not just about pointing or telling. Ask them to "show me" and then respond to their requests immediately, again without correcting their method. The more you do this, the more they will share with you. The more their communicative efforts will evolve and increase.

9. Get them on the computer as soon as possible. Use games based on their interests. Help them use the mouse, or find a mouse that they can work independently. It doesn't have to be simple. I don't know how many children I have been with who can use a typical mouse on their home computers, but have never seen a finger mouse like I have on my laptop, and learn how to use it after I show them once. Move from playing games to typing. Find games that information has to be typed in to continue, or adjust the games settings so that this is necessary. I have 2 year olds on the computer. The goal is to have them typing independently by they time they are in grade one and need to share their knowledge base, which they can do on a laptop in the classroom, if they cannot speak and if their fingers are too sensitive to print with a pencil.

10. If they cannot speak at all investigate the use of facilitated communication (FC) or RPM (rapid prompt method) as soon as possible. Although these are considered to be controversial, it is only so in the minds of those who do not know people on the autism spectrum well and who are unwilling to get to know them. By locking themselves in a strange box called "scientific validation" they are not only robbing hundreds of thousands of people on the spectrum of the chance to communicate with us, but they are also missing out on getting to really know people with autism. Some of my most exciting conversations have been shared and some of the best things I have learned have come through facilitated communication. When they are young use hand over hand to do specific tasks that they haven't mastered yet. Be aware that their tactile response will affect how well this works and respect the messages that their bodies are giving you. Tell them "let me show you how, or let me help you" so that it doesn't become an overwhelming. Respect their body language at all times and talk to them about what you think it is telling you. In the future, this may be very important in the implementation of fc or RPM.

11. Answer the "why" questions of life. Typical three years olds spend this time of their lives asking hundreds and hundreds of questions every day, driving the adults in their world slightly crazy. But this is how they learn how the world works. 3 year olds on the spectrum have the same questions as the other children in their minds but their communication impairment stands in the way of asking them. So answer them anyway. Hang around with other three year olds to figure out what questions are asked. Or just share the way our worlds works in every way you can. This is probably the most important early intervention program you can put into place. The adults talk of the difficulty that they had figuring out how the world works, and the huge amount of time and energy they dedicated to this cause over time. We can help them if we choose.

12. Lower the anxiety that they are dealing with in every way you can. As Jamie Burke stated when I was with him in Maryland last summer: "People thought I was a child struggling to learn to talk, but I was a child overwhelmed with anxiety. Once the anxiety decreased, the communication was easier." Figure out exactly what is going on with their sensory system and use whatever adaptations they need to meet their specific needs. Raise your expectations. No one does well when they are treated like they mentally incompetent, and these children are definitely not that. Meet their communicative endeavors, don't make them meet yours. They are the ones with the "disability". Reduce the amount of stimulation that they have to deal with in the environments that they are in. Take care of any medical problems they have. There is a huge outcry against a lot of the medical research going on, from many of us, because we don't want to "cure" autism. The biomedical concerns are not about curing autism, but meeting the needs of the individual body. The lower the pain and discomfort from within, the lower the anxiety, the higher the level of communication. We now know that there are a lot of gastrointestinal, immune system, and environmental toxicity issues going on with these people. Each is an individual. Each affected in their own way. If we can figure out these concerns, we give them the freedom to feel better which decreases anxiety level, which in turn leads directly to an increase in communication and social interaction and a decrease in the need to use the restricted, repetitive and stereotypical behaviors for calming themselves.

13. If they are the type of children who watch and control videos with a lot of repetition, etc. pay close attention to what they are doing. They are sharing something about themselves. Then share what you are learning about them. For example, after visiting one child, I realized that all the video portions that he had chosen to watch in my presence had to do with "falling down". He also spent a lot of time throwing a variety of items down the stairs. The next time I was with him, I told him that I had realized what he was doing and I thought he was trying to figure out exactly how gravity worked. I taught him a short lesson on the facts of gravity and the history of our understanding of it. He sat calmly and listened very carefully to me without any of his behaviors. When I was done I talked about the loss of his grandmother as his mother was having a hard time dealing with her grief, and I wanted to make sure that he knew why Mom was crying so much and not take it personally. Then I apologized for taking so long to figure out what he was telling us about "falling down" and if he had anything else to tell me I would try to "listen" as well as I could. He immediately went to the PEC board and got a picture of a lake and gave it to Mom. She guessed all sorts of water things, which were obviously wrong, and he went and got another PEC, this time with the truck on it. We determined that he wanted to drive to the lake, and thus, in spite of the fact it was the middle of the winter, we decided to go. On the way we stopped for gas, and as we were waiting for Mom to do that, he worked with his CD player, first finding a song, and then finding a specific line and then finally playing it over and over and over again for me. I don't remember the exact words of the line, but it had to do with supper cooking and daddy being home. His Dad had been working out of town for some time. I told him that I thought he was telling me he missed his Daddy and wanted him to come home. He stopped the repetition, so I think I got it right and he was calm and happy for the rest of the trip (in spite of the fact that the road to the lake was filled in with snow so impassable) as I shared this line with his mother. The interesting thing about this process is the fact that he chose the lake as his PEC, not any of the places that we could visit in town. It gave him the time to find the line on the CD. Since we stopped for gas, we actually didn't need that time, but had we not, we would have. This is what true listening and accepting of communication entails. Since this happened with this boy, I have had the repetition of videos, etc. used often as a means of communicating something that is hard for the person to say independently. You have to make the effort and also accept communication, not fix it, or you won't get this far.

14. Don't treat them any differently than you would any typical child. Don't force them to sit in chairs. Don't force them to look at things. Don't ask them the same question over and over again. Don't ask them questions that you already know the answer to and so on and so on. Teach them naturally and respectfully. The inability to sit for long periods of time, and the resistance to look directly at something is an indication of a sensory problem, not something that needs to be "TAUGHT". Avoid any treatment program with these type of activities or expectations.

15. Raise your expectations. Communication is a natural human ability and people on the autism spectrum have that ability as much as anyone else, but the anxiety gets in the way. If you expect a response you will get one, though it may be in a different form than you are used to. This is okay. If your expectations are low, two things will happen. They will meet your expectations head on and may not communicate with you and/or you will not be paying attention so you will miss out on what is happening. One evening I was sitting at a table watching a man on the spectrum interact with his staff. The man was believed to not have the ability to talk at all. He was looking in the refrigerator and the staff asked what he was looking for. The man answered "milk" as clear as anything, but the staff missed it because he was not paying attention. Take full responsibility for your own part in the dialogue. Communication is a two way street. You have the power to clear the way or place barriers. It's your choice.