Introduction for Wally’s letter of 2⁄19-6/28/08 to Dan
In this letter Wally writes to his friend Dan. Dan and Wally are about the same age, 43 years, and both are nonverbal autistic. Dan, like Wally, uses facilitated communication (FC) to communicate. Both Dan and Wally started to use FC as a communication tool in 1992. Wally and Dan met at a conference at Syracuse University in 1995 and have been friends ever since that time. Dan lives about 2 hours from where Wally’s home is. Dan’s sisters, Mary and Jackie, bring Dan to visit Wally once or twice a month. Until a few years ago, Wally would visit Dan at his home but now, since the ALS (Amyotrophic lateral sclerosis, has weakened Wally so much, he is not able to take a long trip so Dan comes to visit Wally. Between visits Dan and Wally exchange letters and are in contact via the internet.
Many in the professional community have said that the nonverbal autistic person is not capable of establishing a true friendship as we “normal” people do. The professionals have also stated that even if the nonverbal autistic person does establish something similar to a friendship it will be of a short duration. In a recent letter to some friends, Wally writes after their visit:
“THE TIME REALLY WENT BY VERY FAST FOR ME WHILE YOU WERE HERE. I KNOW THAT THIS IS A SIGN OF TRUE ENJOYMENT OF YOUR COMPANY ON MY PART. REALIZING THAT WE HAVE BEEN FRIENDS FOR MOST OF MY LIFE IS THOUGHT PROVOKING ON SEVERAL FRONTS. THOUGH WE AUTISTICS ARE CONSIDERED BY THE “LEARNED” COMMUNITY* TO BE INCAPABLE OF ESTABLISHING MEANINGFUL RELATIONSHIPS WITH OUR PEERS, I BEG TO DIFFER AND USE OUR FRIENDSHIP AS WELL AS MY FRIENDSHIPS WITH DAN T., TOM P., AND LARRY T., TO MENTION A FEW, TO REFUTE THEIR OUTDATED THINKING ABOUT THE AUTISTIC PERSON’S SOCIAL AWARENESS AND CAPABILITIES.
OUR OUTWARD PHYSICAL REACTIONS WHEN WE MEET OR VISIT OUR FRIENDS IS SOMEWHAT DIFFERENT THAN THAT DEMONSTRATED BY THE NT COMMUNITY*. OUR OUTWARD REACTIONS SHOULD NOT DIMINISH, IN THE MINDS OF THE NTS*, THE STRONG BONDS OF FRIENDSHIP, LOYALTY, AND LOVE THAT WE ON THE AUTISM SPECTRUM CAN HAVE BETWEEN US. AS YOU KNOW, OUR PHILIA LOVE FOR OUR PEERS IS UNMITIGATED BY TRIVIALITIES AS ARE THE RELATIONSHIPS BETWEEN THE SHALLOWER NTS. WE REPRESENT OURSELVES TO OUR PEERS AS BEING THEIR EQUALS ON ALL FRONTS AND ACCEPT THEIR MINDS AS BEING AS VALUABLE AS OUR OWN WHEN WE CONSIDER THEIR IDEAS, EVEN THOUGH WE MIGHT NOT ALWAYS AGREE. TEACHING NORMAL PEOPLE TO UNDERSTAND THESE CONCEPTS IS NOT EASY, BUT WE NONVERBAL AUTISTICS TRY TO TEACH BY EXAMPLE.”
- “learned” means the professionals (doctors, teachers)
- “NT” means neurotypical, NTS neurotypical or “normal” people
The previous excerpt is from a letter to a family who Wally has been friends with for about 35 years. One of the family members, a young lady, is nonverbal autistic.
As you read Wally’s letter to Dan, you will soon realize that unlike what many professionals would have you believe about the nonverbal autistic person, the nonverbal autistic person does have the ability to develop and maintain strong friendships. In this letter to Dan, Wally writes, “The bond of friendship that we share indicates to others that our autistic lives encompass as much feeling and empathy for other people as do theirs.”
As you continue to read the letter, you will soon forget that this letter is from one nonverbal autistic person to another nonverbal autistic person. You will consider it to be what it is, a letter between two friends, only to be reminded of their autism when it is mentioned by the author of the letter.
You will soon realize the broad scope and depth of the author’s interests as he writes about friendship, nature, the world that he and Dan live in, their minds, their purpose in life, and of their appreciation for their families and friends.
After reading this letter, my hope is that you will have a better appreciation for the abilities that many nonverbal autistic people have and realize that they have much to offer those of us who consider ourselves to be “normal” if we accept them and nourish their abilities. This letter to Dan is a good example of a caring relationship that can exist between two nonverbal autistic people, both of which, when younger, were written off as burdens to their families and to society by the “experts.”
Edited by Herbert van Erkelens
Dear Dan Treacy,
Thank you for all of your trips to visit me. Each of your visits reminds me of how autistic friendships grow over the years. Each time we visit we renew our bonds of friendship that I enjoy so much. Please tell Mary and Jackie that our friendship is far stronger because of their efforts in driving you to see me than it would be if we only corresponded by email. The whole idea of physical proximity teaches us that when we are in one another’s presence the bonds we establish are much stronger than they would be had we never or rarely ever met face to face. Your presence is the essence of our deep friendship. This is the glue that keeps us as friends.
The bond of friendship that we share indicates to others that our autistic lives encompass as much feeling and empathy for other people as do theirs. Truly, the thinking of some “normal” people, if examined closely, is more “autistic” than is ours. Years of observing the “normal” population that I have been exposed to bears this out. Their fixation on their ideas and their need for routines only strengthens my point. Upon closer examination of these foibles I am convinced that each person I know and have had the opportunity to study is very much a person who has some autistic tendencies. I think that this is true for much of the human race from what I can see of it. With this being said, I am sure that we autistics will truly take over the world at some time in the future at which point the world will be a better place to live.
Here is a picture of Dan giving Wally the “autistic greeting.”The blond lady in the picture is Dan’s sister Mary. Mary brings Dan to visit Wally every 3 or 4 weeks. For Mary and Dan the trip to visit Wally is 2 hours each way for a total of 4 hours driving for Mary. This is an indication of how devoted Mary is to Dan.
Years ago, autistic people were a rarity, but now our numbers have increased to approximately 1 in 150 people. Each year our numbers increase with the steady beat of our hearts. Soon, there will be enough autistic people in the country to form our own political party and run a candidate for president. Our mantra on the campaign trail could be “we truly understand what it takes to make a difference.”
Upon our peculiarities that set us apart from those who think of themselves as being “normal”, we autistics will rest on our laurels in the knowledge that we are, without a doubt, the superior minds of our time. Yet, our wisdom is borrowed, our thoughts are not always clear and logical to others, and so we must let other “normal’ realities govern the ideas that we dare share with the world, the universe, and with the whole of outer space. Reality, as we each experience it, is only in our individual minds as we explore that which exists outside of our bodies with our senses. The knowledge of our world is the knowledge that our senses bring to our minds as we occasionally let in stimuli through our poorly developed sensory systems.
In my mind, I frequently notice movement of the world that I sense outside of my body. I watch the clouds move across the sky; the trees moving as the wind blows; the birds flying in formation; waves rolling over the boulders in the endless rhythm of the sea; the Northern lights shimmering in curtains of multicolored fluorescence that flood the northern sky with sails of gossamer that flutter with the ease and grace of a timid butterfly. I am unable to recognize the quintessential universality of these phenomenon that I understand are realized by many others without their being as awed as I am when I experience the same stimuli. Thus, these realities are shared on many levels by as many people with each thinking a different thought; remembering a different reality; reaching different conclusions as to why these experiences are so meaningful to others.
Watching the world that I live in truly teaches me to be a student of the world that I live in. Yet I am very indulgent to other people’s realities when they want to overshadow my realizations with their own. However, their requiring that theirs is the only one true answer that is acceptable makes me balk with the stubbornness of a mule. This idea of theirs reminds me that the thoughts of others will only require one mind, theirs, that will independently process stimuli for everyone else. Tell me that others can experience the same stimuli and that they will all think the very same thought and I will vehemently disagree with you. In my uncertain reality, I am aware that not all people think the same way that I do nor do they react in the same way to a stimulus as I do. I accept that we do not all perceive the world in the exact same way. If this was not the case, then there would only be one type of music and one type of potatoes. This is immediately, as I see it, the big problem regarding the thinking of thoughts and the reasoning that other people partake in. They are not always willing to be reasonable in what they accept to be someone else’s reality. The probability of their accepting ideas other than their own happening on any measurable scale is not very great. Repeating your thoughts to others in an attempt to get them to possibly accept your position is more trouble than it is worth not because thinking requires you to pattern your mind to the standard set by the “normal” population but that you would rather think about topics that are more relevant in your life at the moment and not reinvent the wheel. The reality that each of us enjoys is uniquely ours. Throughout history, wars have been fought over one person’s inability to recognize another’s perspective on a problem.
Our minds will elicit the next brainstorm of ideas from reality’s stimuli. Our minds will take information from our previous encounters with reality that are lurking in the shadows of our minds. Our minds will quickly assimilate these past experiences into our new thoughts that are stimulated by today’s encounters with reality. At times, because of our unique perspective and unusual understanding of the world that we live in the reality that we experience and try to share with others only brings amusement and entertainment to them rather than a true understanding of our points of view.
Now that we can communicate, we can express our thoughts on most topics so that other people will know what we are thinking. When our ability to express our thoughts stops very suddenly, we are resisting the swinging of our ideas from one possible conclusion to another as we decide on which we will choose. Even we nonverbal autistics will sway our decisions between possible choices before we make a decision that we think is correct or one we are pleased with. This swaying between our possible answers is not an indication that we are unable to make a decision but rather should be looked at as our ability to consider the question carefully and not be coerced into making a rash decision that we are not pleased with. Each question that we answer is truly answered with much thought and consideration as we want our answers or choices to reflect each of our minds. This will not easily be recognized by others as being of any consequence but we know in our minds that we are truly very capable of thinking our way through the myriad of daily choices that we must make.
Do you think that you and I, Dan, really brave reality to escape the world of autism that we are a part of if we ask those who we trust to not question our motivation when we do something? These same people thank us as we think and talk to them of the worlds that we recognize as being a continuum of the world that they embrace as being their reality. This reality that is juxtaposed to the world that we live in is as confusing to us as is our reality confusing and foreign to them. Realizing this thought is enough to stop the two of us from the mindless pursuit of a world that is perhaps nonexistent to most, I think that we should simply say that which is on our minds. The reality that I experience often is the same as if I were almost normal. When I experience the world in this way I indulge myself in thinking that we are a part, a small piece, of that point in space where we are put by reality. I think that we are put on earth as part of our journey to think our way out of our personal dilemmas that we all have so that we will all, sooner or later, realize that we get our realities from our God. That each of us, Dan, is accustomed to this concept is wanting to tell everyone that our soul, our energy, is totally without end.
You and I, Dan, dare to consider that we autistic people are aware of what other people think by listening to their conversations, by reading their written thoughts, witnessing their actions, and by reading their minds. Yet, we know very little of their individual realities. We both want tomorrow to bring with it that satisfaction we crave for knowing everything, but understand that we might have to be content with a lesser goal. Thinking of each person in the world as having his own reality only makes this task of our knowing everything an impossibility. We will have to be content with knowing that it is humanly impossible to know everything and be happy in knowing that our thinking will enable us to make rational decisions and choices about that which we are at present unfamiliar and unaware.
We know that each person has his own mind to use to think with. Each of us knows that when reason is lacking or is totally absent the person’s thinking is erroneous and sometimes altogether nonexistent. I understand this is the nature of things, but question what is the purpose in God’s plan to affect a person’s ability to think coherently as there is no logical reason for it. Rational people think in rational terms with rational conclusions. I understand too clearly that, when others will not apply a logical method to their thinking, their ideas concerning their wants and needs will take on their bias over their concerns. Often, we use our own biased thinking when we figure out something that is occasionally of consequence to other people but not to us.
Was the grand idea that you realized your original thought or was it that of another person’s mind? Looking to answer this question you take to heart its importance yet you look to pin down its original author. That is truly remarkable to ponder or is this your way of teasing those who doubt your ability to put your thoughts on paper? Thinking about my thoughts as I become aware of them opens the dialogue between my two inner beings, my impulsive self and my contemplative self, to determine the origin of the idea that I have in my mind. Did I think of this idea on my own with the help of one of my selves, or is the idea that I am contemplating that of another’s mind that I have eavesdropped on without my being aware that I was taking their thoughts. To begin to question the origin of one’s thoughts is, in retrospect, like watching your image in a mirror without knowing that you are looking at yourself. Your reflection is staring back at you with the same perplexed stare that you know as your own but is truly without any features that you can recognize. Privately, you think this reflection as being you but your ego points out that you are much handsomer than is your reflection. Your ideas take on much more value to you if you conclude that they represent your original thinking. Thoughts of our own therefore are much more valuable to us than are those of others we don’t know and don’t trust.
I’ve found ideas in my mind that I don’t remember formulating on my own. Perhaps, either or both of my selves quoted someone else’s ideas to me, or repeated my previously formulated thoughts that I have stored in my mind. In my mind, I realize that our thoughts are only recycled thoughts from our previous mental activities or are products from our experiences. The point that I want to make is that ideas no matter who thinks of them first are only valuable if they are utilized by someone otherwise they rarely enter the thoughts of others to be incorporated into new ideas. The human mind is a repository of others’ thinking even if they lived centuries previous to our own existence. Their ideas if passed on are refined by us to be compatible with our times. Thoughts that I realize will benefit me or others will eventually be thoughts that I will pass on. Passing our thoughts on to others is as important as is passing on our genes. Thoughts will be entrusted to those who realize their value.
In either case, whether you created the thought on your own or if you used someone else’s thoughts, you would have achieved your goal. We each find to be without merit the thoughts of people who pontificate their ideas and who often think of their ideas as being the only valid solution to the problems at hand. You, Dan, unknowingly reward these people in very definite ways when you express yourself by writing your thoughts and ideas out on paper. By trying to satisfy their need to be in constant control of every situation, they take from your voice those thoughts that they find as being the thoughts and actions of a benevolent person and claim them as their own without giving you the credit for the mental work that you have made available. I only point this out to you Dan in the hopes that you understand that outside of our families and close friends there are other people in the world who feel no compunction when it comes to using the mental work of another person without giving due credit to the creator of the idea or thought.
To refine the thoughts of those who preceded us to bring them into the context of our times is without issue if people give the original author of the idea credit for his thinking. I recently watched a tv program on Isaac Newton and his ideas that made me aware of how ideas evolve over the course of history. One of the ideas that Newton had that we use today with improvements was his invention of the reflex telescope. Telescopes were used before Newton’s time. Newton improved on the original idea of the telescope and in recent history, our contemporaries improved on Newton’s ideas. This chain of ideas is what I find so very fascinating as I could watch the evolution of the basic telescope of hundreds of years ago to that which is found in use today in the Hubble telescope. Our ideas portend to be what our future will become. Thoughts that you and I now have about many topics seem to be superfluous to our contemporaries, but in time these ideas will be the norm. Yet, in our minds, Dan, the future is at hand.
Waves reach the shores eventually destroying them by returning many times to wash away the fine sand first then the small stones while leaving the large rocks and boulders until they too have been reduced to pebbles and at last sand. This, Dan, is the way we teach the “normal” people that we are as intelligent as they are by revealing bits and pieces of our being first to those who will accept this truth while constantly weathering and eroding away the ideas of those people who don’t believe in our abilities. Dan, you carry on this “weathering” process every time that you present your written thoughts to a college class or tell Mary or Jackie that you want to visit me. In each case you are weathering away the opposition to fc bit by bit.
In previous letters to you Dan, I portend to be pontificating to you about many topics, but I think that you know that this is only my style of communicating. To my way of thinking, I pontificate principally to make you understand the ideas that I present to you. It is truly, in my way of thinking, your prerogative to indicate to me when I indulge too much in this practice. You will not offend me in the least. On the contrary, I look to you to bring any positive or negative comments about my ideas to my attention.
Another picture of Dan and Wally that was taken around 2005. They both died recently
The February 23, 08 wedding of my sister, Jenny, to Marcus Anderson truly was a very nice event. I was thrilled that the wedding ceremony with Father Julian officiating was held in my room. The wedding only lasted 30 to 40 minutes but the happiness generated by the occasion will last for that many years or longer. Our best wishes and hope for their continued happiness will always be expressed with our deepest regard. Truly, I am very happy for Jenny and Marcus as I know the kindness very well that they each express toward me. The principals of the families joined in this union will reach out to each other to surround themselves with a mantel of love and understanding that will teach others that we are all equal beings in the eyes of our god. This equality is but the beginning of the true understanding of those who come from different cultural backgrounds. Rest assured that I will not think of this union in terms of the marriage of two races but recognize that it is a marriage of two people who love each other. Love conquers all. Upon our repeating the Lord’s prayer in unison the couple was united in the true love of our God as the dear Father Julian offered his blessing. You would have enjoyed this opportunity to witness this union. The guests politely retired to Jenny’s house after the ceremony for a reception party. They enjoyed a sumptuous dinner.
How are your sisters and their families doing? This is the flu season but so far we have been healthy. I didn’t get the flu shot this year. Did you? Our feelings perhaps reflect what our opinions are about the rest of the mandated shots and their safety and need. In this skepticism there is the realization of the need for various immunizations but there is the telltale “once bitten” connotation that is in our thinking whenever there is a mass program about anything that is directed by our government.
I want to thank you, Dan, and your two lovely sisters for the Valentine balloon and for the St Patrick’s day gifts. Several months later, each of the balloons is still being enjoyed and the music and button will be a reminder of our friendship for years to come. Give Jackie and Mary a hug and a kiss for me. They really are the greatest. Your mom is very happy for the way Jackie and Mary are looking out for you, Dan.
I think that we truly are the luckiest guys in the world to have the families that we have. As you know, your wealth is in the family as you and I now realize. We are both wealthy and lucky people.
You my friend, please remember to bring your always lovely sisters when you next visit. I always find such pleasure being in their company. I hope that you visit soon and often. Remember that the next time you visit, we will have a nice dinner for you. Kindly invite Jacquie and Mary to this repast. The fasting will be over on Easter, let the feasting begin. As you and I know, eating a good meal is more pleasurable if you are among family and friends.
Look out your window and watch for the birds to fly to their nests. I know that you thank God for these treats as I do. The freedom of a bird to fly to the ends of the Earth will always fascinate me. Watching them as I do and wondering every day about them is reason for one to believe in God. Each day you live is a day to understand more about the world you live in. I was so thankful when I was able to communicate and ask questions relating to God that I put the past behind me as far as not enjoying my life as I now feel that every day is God’s gift to me. Each day I live I thank god for the experience of finding peace and love in my life. (3/20/08 Wally last worked on this letter before going into the hospital for emergency surgery)
The time has gone by extremely fast since I last worked on this letter on 3/20/08. It is time I get back to finishing this letter to you, Danny, as well as getting back to the letter I have to finish to my Gram Marjie that I also had started previous to my recent hospitalization.
Thank you for your concern for my well being during my hospitalization as well as my recovery. Tell Mary that I want to thank her for bringing you up to visit me. I really appreciate her thoughtful efforts. Thank your sister Jackie too for her thoughtfulness. I hope that they both realize that they are perhaps other than you my favorite Treacy family members. Please Dan, take good care of yourself so that you will remain healthy so that you will be available to transfer my thoughts to my parents when I become unable to communicate to them on my own. You will become my voice.
Thoughts of my life will remind me of the Treacy family when I can no longer communicate. These happy thoughts will sustain me. Waves of feelings will nourish my mind when I can no longer communicate with the outside world. Yet, I will not be silent as long as you are by my side my friend.
Years of traveling on life’s many winding roads would occasionally bring me to a point in my trip where I would have to make a decision whether to take the left fork or the right fork. At these intersections, I would always pick the road least traveled. This decision would be seen by many as unimportant yet to me I realized that I would be traveling my journey entirely on my own. Eventually, though not knowing in the beginning of my journey, the diverging branches of the highway would, in time, converge leading to the same destination that I had originally aspired to when I made the choice to proceed either left or right. Yet when we are presented with choices we are hard pressed to make a decision. Thoughts wash through our minds as we contemplate our decisions as being either right or wrong. We think that we realize the importance of what we do when we make the choices that we do but in the grand scheme of things our choices are only important to us. This realization reminds us of our insignificance in the big picture that each of us thinks must revolve around us. In the big picture, we are but grains of sand. I truly think that reality runs the show that we quietly attend as spectators and not as directors.
You want tomorrow to be better than today was. You want yesterday to be repeated only if yesterday was better than today. Dan, you and I both think that repeating the past is not as exciting when you repeat it for the second, third, fourth, or fifth time unless the repetition brings with it some modicum of pleasure. Each of us tries to draw from our past experiences to answer today’s questions. Only we understand our thoughts, our wishes, and our dreams. Only we can express our mind’s thinking. Yet, our dreams repeat reality only as we each experience it. The point I am making is that you and me, Dan, think other people reach exactly the same conclusions about the world we live in when they experience the same or similar stimuli to what we do, but we now know they don’t. You will not experience the world as I do but you experience the world in bright colors or tones of grey thinking as if the rest of the world experienced it the same way.
We have a new staff person to help with my care. Betty Williams is her name. Betty is a retired New York State office worker and she worked with Marcus’s dad at the state. We are ecstatic that she is helping us with my care. Betty tells the greatest stories to us and she reads from the bible to me every day. She is here at 7:30 am every week day. On Monday, Tuesday, and Wednesday she works until 5:00 pm. On Thursday and Friday she leaves about noontime as she is a staff person at a group home that is operated by living resources, the agency that Jenny and Marcus work for. We think of Betty as you would think of a benevolent aunt. I like betty very much and look forward to her arrival each day.
Soon, this week I hope, pop will take me out for dunkin donuts coffee. This excursion will easily establish for me the turning point in my convalescence. Realizing that you can want to do something and then realizing when you have accomplished each thing on your to do list was the reality that thought is only a precursor to thoughtful action. Each thoughtful action that I become involved in points to the fact that I realize to what extent I now am able to do things. The only concessions I now need that will allow me to do something as mundane as going for a ride is the wish of a willing and thoughtful family. You too Dan realize this when you want to visit me. You must rely on your good sisters to make your realized want a reality for you.
As we must rely on others for the realization of our ideas we have to willingly tell them of our thoughts. I just started to let my father know when I am too tired to work on my computer. I feel empowered realizing that pop is able to understand so clearly what is on my mind when I tell him to help me get into my bed so that I can rest. This insignificant request is so extremely innocuous to most that they wouldn’t give a second thought to its intrinsic importance to me. Years ago I would have been quite upset when I could not have communicated my wishes to another person. Today when I want to let someone know what I want or need, I can transfer my thoughts to them with the written word without becoming too unpleasant. The power of being able to communicate with another person is without a doubt astonishing when you think about it.
I realize talking is much easier than is FC but when one can’t speak, the best alternative is to write out your thoughts. I like to communicate not pointing to letters but by using MT. I realize this is only possible between two minds that want to communicate this way. I totally agree with you Dan, this is perhaps our hour to let people know that real thoughts radiate from our minds much like radio waves radiate from radio transmitters. Radio waves require a receiver to convert them into energy that we know as sound. I’ll receive your radiating energy and then turn it into words in my mind. This is the idea you thought when we first met at the FC conference in Syracuse in 1995 or 1996. I must say that I totally wanted to meet you upon receiving your mental telepathy energy. It was the strongest signal there.
I did go for a nice ride Friday afternoon 5/23/08. I really enjoyed this outing. We went to dunkin donuts in Malta, NY, about ½ hour from home the way dad drives. We only went to dunkin donuts and then back home. The hour plus trip was just right for my first time out in 5 or 6 months. I was tired when we got back home but I enjoyed the ride. I tire very easily now since my last episode in the hospital. Hopefully I will gain enough strength back to allow me to stand up to the rigors of a trip to Maine this fall. I travel the best now in the motorhome because I can be on the bed lying down which eases the strain on my neck.
Thank Mary for me for bringing you up on Sunday 6/22/08. I truly look forward to this year’s picnic.
FC = facilitated communication
MT = mental telepathy
Jenny Wojtowicz has her own website on art and jewelry: Jennys Dresser Drawer. Marcus Kwame Anderson makes paintings, drawings, comics, music, poems and whatever else moves him: Marcus Kwame Anderson’s Art.