Connecting with Autism
This blog entry is a compilation of two papers written by Founder/Director Amanda Taylor when she was studying Psychology at Goucher College in December 2010. As a disclaimer, some of the content may reflect ideas, statistics, and language that was commonly used in 2010 but may not be used today. The main body of the content is a paper written for a qualitative research course. The preface and additional thoughts are quoted from a response paper written by Ms. Taylor, and are provided here to give you some insight into the reflections she made after completing the qualitative research study. Happy reading, and we hope by the end of this text you make a deeper connection with autism!
“When I was deciding on a topic to investigate for my qualitative research project, I contemplated a few different ideas about what I wanted to explore in great depth. Although I had completed observations in a religious institution for my first project in this particular course and spirituality was of great interest for me to study, I ultimately decided against it. It was between researching themes around spirituality or themes surrounding autism, and I chose to explore autism. Little did I know that I would be able to fulfill both my interests all within one project.
I made the decision to study the lived experiences of those who had some experience with autism, particularly individuals who were diagnosed on the autism spectrum, professionals who worked with individuals with autism and parents of those with autism. I wanted to find out more about how people felt concerning the idea of inclusion of people with autism into their school system and their everyday life, as well as within society as a whole. I wanted to find out how people felt about disability awareness being brought into their everyday lives, even going so far as promoting disability awareness classes for “normal” students and entertaining the thought of having those “normal” students spend time within the realm of the life of a person with a disability. Speaking of that realm, I wanted to find out how people felt about the concept suggested by common terms used by individuals in society, such as “their world” (the autistic world) versus “our world” and whether or not they noticed a difference in those “worlds”. Going further with that idea, I wanted to discover if people thought autism was indeed a disability. I had notions that people with autism actually had extra abilities rather than disabilities, almost like sixth senses, and I wanted to see if anyone else shared my beliefs. I was unaware of the journey I was about to begin and what I would ultimately discover.”
“My process was not as difficult as I had imagined, and the results that came out of my work surprised and enlightened me. As I mentioned before, I did not predict the themes that would come to light during the course of this study. I also did not expect how much of an impact this project would have on my life. Although my series of interviews has come to a conclusion, I feel that there is so much more out there to explore and that this is only the beginning for me in doing research on this topic. Coming into this project, I thought I knew a lot about autism, but now I feel I am just beginning to scratch the surface of what it is all about. I want to continue this type of work, and I plan on figuring out how to integrate this type of work into my career somehow. I feel that what I have accomplished this semester is of importance and that I have somewhat of a responsibility to bring my newfound knowledge to the general public in some way. I have yet to work out the logistics of how I will do this, but I am looking forward to accomplishing this goal in the near future. The voices of my interviewees should be heard, as well as those of countless others who are out there, and I will do my best to create a space where this can happen.”
In recent years, much attention has been given to autism as the statistics acknowledged by the media are constantly rising. Many people may have heard the headlines: “One out of one-hundred and fifty children will have autism… It has risen to one out of one-hundred and ten… 1.5 million Americans are living with the effects of autism” and so on. Many have also heard such phrases as “No Child Left Behind” to describe what is being done to “fix the problem” in our schools or to help the children who are now labeled autistic, among other labels. These phrases are all too familiar to the public ear, but has the public really heard the true story about people with autism? Have most Americans been exposed to the everyday experience of a person with autism? Have they ever looked deeper to find out for themselves if there is more to uncover about the mystery of autism? This study aims to uncover some of the mystery. If you are open to it, there seems to be not so much of a mystery at all. The more willing we are to connect with autism and see the person who is just like us, rather than the autistic person, the more we will be able to understand about our own lives and our purpose here in this world.
Autism is defined in the Diagnostic and statistical manual of mental disorders (DSM-IV-TR) as: A qualitative impairment in social interaction, communication, and restricted, repetitive, and stereotyped patterns of behavior, interests and activities. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: 1) social interaction, 2) language, or 3) symbolic or imaginative play. (Ashby and Causton-Theoharis, 501). It has been characterized “as something that is outside the range of typical human existence, something undesirable” (Ashby and Causton-Theoharis, 502). What is most striking to me in this explanation of autism is the word “stereotyped”. It suggests that someone, somewhere, came up with a predisposed idea of what these individuals’ existence should be. Thus, how far one deviates from this stereotype dictates how “severe” or “disabled” they appear. Christine Ashby and Julie Causton-Theoharis (2009) suggest that “Normalcy is, however, a mythical state, a construction rather than a reality”. At some point during this construction of normalcy, ideas came about, which led to labels, which led to adverse reactions and behaviors of those who fell under the term “normal” toward those who were not considered to be “normal”. My hope is that through reading the statements that follow, ideas will begin to change about what “normal” versus “disabled” really means. The ultimate goal is to find a balance while acknowledging that differences make us unique and interesting, to break down some of the barriers that have been put in place, to realize that we are not so different from each other after all.
This qualitative study is phenomenological in nature. It employs the ideas of transcendental phenomenology in the sense that it includes ‘identifying a phenomenon to study, bracketing out (the researcher’s) experiences, and collecting data from several persons who have experienced the phenomenon” (Creswell, 60). As the researcher, I have utilized the idea of “reducing the information to significant statements or quotes” (Creswell, 60) and I have combined these ideas into larger themes that surfaced during my interviews as well as throughout my background research. Part of my method comes from my own personal experiences, as I have come to find deeper meaning behind statements and quotes that others have offered in order to develop my current results and beliefs. I feel that sometimes one might overlook the essence of what lived experience is all about if they miss the importance of a few profound statements made by an individual, and with this study, I wish to illuminate the value of these statements.
Before beginning my interviews, I came into this study as an individual who has had a long history of interest in autism. My work experience started with volunteering at a local church’s Sunday school for autistic and other developmentally delayed children. I also worked as a student aide in my high school’s special education department where I supervised two autistic students. I eventually became a senior therapist for a company that provided in-home therapy after school for families with children with autism. I worked with this company for a number of years, using Applied Behavior Analysis and Verbal Behavior techniques. I also worked in the public school system in a special education classroom as a teacher’s assistant with a program for children with severe and multiple disabilities. I have studied many disciplines that have to do with educational practices and therapeutic techniques including but not limited to dance therapy, assistive technology for students with special needs, and behavior management. Although I do not have anyone in my family with autism, I have a few friends and colleagues who have been diagnosed on the spectrum. I have an aunt with cerebral palsy, and I have been no stranger to individuals with disabilities within society. I currently volunteer at a school for the blind where students with autism participate in the program I assist. Over the years, I have experienced many situations where I received adverse reactions from others in public when I was with one of my students. I have seen the looks on others’ faces and I have heard the statement “I could never do what you do” more times than I can count. I realize the stigmas that exist, and it deeply saddens me, angers me, and also moves me to be an activist for autism and other disabilities. I reveal all of this to allow interpretation as you will, considering I might have some bias. I also reveal this to further support my point that unless you have experienced it firsthand, you may not be able to fully sympathize and truly understand not only what these remarkable individuals go through, but what they have to offer you and the rest of the world.
The individuals I interviewed were recruited based on either their personal or professional experiences with autism, or in some cases, both. I interviewed one man who identified as being diagnosed with Asperger’s syndrome in his junior year of high school, but now supports that he no longer fits the diagnosis. This man is twenty-three years old and is a recent college graduate, now in the workplace. I have called this man Jack in the study. I interviewed two women, both professionals who work with children on the autism spectrum. One woman directs and performs in a theater troupe especially designed for children and adults with multiple and severe disabilities that uses an alternative technique known as emotion stimulation therapy. She identified the main population her company serves as those with autism. She is known in this study as Anna. The other woman I interviewed is CEO of a company that provides services to children with autistic disorder. She has worked for ten years in roles such as educational behavioral consultant, teaching assistant, and senior teaching assistant. She is studying to become a Board Certified Behavior Analyst, has a master’s degree in developmental educational psychology, and has special needs people in her family, including those with mental retardation, cerebral palsy, developmental delays and physical disabilities. I call this woman Belinda.
I met my interviewees in a variety of locations, but all interviews were conducted on the east coast of the United States in the month of November 2010. Each interviewee was given a consent form to sign and return. They were provided with copies of this consent form as well as a document explaining the interview process further, giving a detailed description of the researcher’s intentions and six sample questions. I utilized a digital voice recorder to capture audio of the interviews I conducted. I began each interview with buffer questions to lead into the topic to be discussed. The interviews continued with questions posed about social aspects surrounding autism, including reactions of others and ideas about acceptance; the concept of “their world” (used to describe the autistic world) versus “our world” and whether or not the interviewees thought there was a difference; how the terms “disability” and “normal” are used; whether or not the interviewees had witnessed or considered people with autism to have extra abilities; how they felt about inclusion/integration practices in the public school system; and how they felt about disability awareness classes. The interviews were open-ended and the direction of the interview was free to change at any given moment depending on the individual’s testimony and where the individual wished to lead the conversation. Certain examples of personal stories or experiences were welcome and occurred in all interviews. All interviewees completed their full interviews without requesting to terminate at any time, and each interview lasted approximately forty-five minutes to one hour.
The audio recorded interviews were then transcribed into electronic documents to the degree that the researcher was satisfied that all relevant information was included. To maintain confidentiality, any personally identifiable information was removed or slightly altered and pseudonyms were given to the participants. Throughout the process, as the researcher, I maintained a combination of field notes, written reflective journal entries, audio recorded memos and personal thoughts, and features within the software program NVivo were utilized in order to chronicle my findings and epiphanies. NVivo was also used to eventually code transcriptions and determine emerging themes.
Five distinct themes transpired throughout the interviews and subsequent research. Certain themes were more prevalent depending on the interviewee’s experiences, but each individual touched on all of the five themes at some point within their responses. The five themes that became apparent among the interviews can now be coined as (1) dis-ability (2) all one world, (3) spiritual aspects of autism, (4) fears, and (5) contributions.
Theme #1 – Dis-ability
“Autism is a lifelong experience, and is neither contagious nor curable. It is, quite simply, a natural part of someone’s being, every bit as much as eye or hair color, flesh pigmentation, and ancestral heritage – as unique and individual as each individual is unique.” (Stillman, 2).
There seems to be a societal tendency that automatically assumes incompetence or lack of intelligence. Labels are often given to individuals with autism such as “retarded”. The author of the above quote, William Stillman, has a mantra that reads, “always presume intellect” (Stillman, 8). Lack of language, delayed rate of sensory processing, or lack of certain other skills does not mean lack of intellect. “Normal” people tend to filter more information than individuals with autism, therefore it only makes sense that it would take the “normal” person less time to process information than it would an autistic person. “Normal” people do not have high sensitivities and can more easily ignore sensory input than a person with autism.
There is another common notion that people with autism are not aware that they are different. Adults tend to talk about children right in front of them as if they are not in the room and not paying attention. They tend to believe that they are “not in there”. On the contrary, these individuals “are very aware of the narrow ways in which they have often been constructed by others.” (Ashby and Theoharis, 514).
My first interviewee, Jack, states that “disability in my case is a little extra time”. It might take him a little longer “to integrate (himself) into a group”. He also chooses to distance himself and be closed off at times from his parents and fiancée, who is convinced Jack no longer has the Asperger’s diagnosis. He explains how his social life did not fit the norm in high school. Jack says, “I definitely wasn’t the normal person… I didn’t fit the stereotypical high school guy”. He also mentions feeling awkward and recognizing that people stereotype him. He claims, “I felt like I’ve been low man on the totem pole before” and that the “story of my life is nice guys finish last”. Jack has resolved some of his feelings since high school and the bullying that he endured and says, “I know there are people out there who aren’t gonna like me.. I’ve wanted to be the prom king my whole life but I’m obviously not gonna be that all the time. You’re gonna wanna be that person every time. It’s ok not to be”. He has a remarkable outlook and has really embraced who he is.
Belinda talks about professional experiences where she has witnessed individuals like Jack who have moved past their “disability”. She explains, “I’ve seen children fall off their label”. She also posed the question, “How do you say somebody’s disabled when I have seen children who could not ask questions, tie their shoes, give themselves a bath, and now they can do that?”
The question begins to become not one of whether or not the person with autism is that different or disabled, but whether the minds of the general population are disabled. As a society, we say things like “what’s best for the child” when we makes decisions about what they need. We try to make adjustments according to their dis-ability rather than their ability. Belinda described it as striving to “provide the child with an appropriate education guaranteed by law” but said “you have to deal with a little bit more red tape” as opposed to being able to teach them the way you think you should or they way they might need. She said you have to “deal with appeasing the overall organization, as well as parents, while balancing both with the best interest for the child, and state, and federal laws”. She even brought up having to appease the insurance companies in some cases.
But do insurance companies and our government really know “what’s best” for the child with autism? Belinda said, “The organization as a whole may not always be looking for what makes the child independent. They may be looking at the monetary aspect, how can we keep the child here the most hours of the day, what can we do to show progress but not too much progress so they’re out of here?”
Belinda also spoke about having the children see their differences and having them compare themselves to other children. She said “You can’t expect a child to act the way the rest of society acts without seeing the rest of society. No, we tend to look at everything through (you’ve heard the term rose colored glasses), purple colored glasses. We have what we’ve been taught by society. We understand the constraints of society. Well, those children haven’t been taught the constraints of society.” So, if society wants what’s best for the child with autism but is hiding them away, how can this be balanced? How does it work? Ashby and Causton-Theoharis argue, “How can someone demonstrate competence, how can they learn from others if they are shut away from society? Learning is a social process, in which people learn from each other and with each other. Therefore, learning cannot occur without interaction.” (Ashby and Causton-Theoharis, 513). Society often measures competence and intelligence from standardized testing scores and IQ tests. Ashby poses the idea, “we need to recognize the socially constructed nature of ability and disability and recognize alternative notions of intelligence. As educators we need to rethink competence and broaden our conceptualization of intelligence and ‘normative’ performance” (Ashby and Causton-Theoharis, 514). One individual with autism in their study stated, “I want everyone to know that autistic children aren’t stupid the way people often think” (Ashby and Causton-Theoharis, 510).
Theme #2 – All One World
Temple Grandin, an individual with autism whose fame has been increasing in recent years, mentioned a teacher she once had who supported her in school and recognized her talents rather than the autism label and stereotypes. She stated that her teacher “didn’t try to draw me into his world but came instead into my world” (Ashby and Causton-Theoharis, 512).
Many people use the term “their world’ to describe the autistic world. In my professional experience, I have generally been instructed to bring the child with autism as much into “our world” as possible. Not until recently have I been given the idea that we should strive to move into “their world”. Anna talked more about the concept of their world versus our world and her perspective is that, “They ARE in their own world and that world for them is what they need, is what they understand, what they connect with, what takes their focus and their concentration”. She goes on to say that in her work, she “never wanted to take away their need to rock, their need to stem, their need to make sounds. I wanted them to know that they had every right to that world and if it was possible could I step into that world with them? And when they were ready.. when they trusted us, the artists in the company, (in) flashes, literally flashes of seconds, they would come out of that world, be surrounded with our world, learn about our world, and very safely go back into their world.” Anna speaks of how beautiful their world is and she says, “They don’t start wars, they’re not corrupt, they don’t sin. They have no sin in them, if you listen to the religious leaders, so why is our world so much better?” She questions what’s best for us and said, “How do they know what’s best for us in society?”
Jack supports, “everyone’s in their own little world, whether you’re autistic or whatever I think anybody can be in their own little fantasy.” In speaking with Jack, I wondered what is our world? Isn’t it all the same world? Jack called it “daydreaming”. He explained to me that he would have “moments of where I’m bored or tired” and said, “It’s like when you’re half asleep half awake.. or maybe a third asleep a third awake and a third in someplace only you know”.
When asked about the concept of their world versus our world, Belinda replied, “You’re gonna push away something that’s aversive to you. That’s not something strictly my world or your world. You’re hard wired for warmth, shelter, food, love. Anyone needs that. It doesn’t matter if the child is autistic or neurotypical.” She went on, saying, “I’m totally abnormal. We say ‘stereotypical behaviors’.. how many people have OCD? People suck their thumbs, twirl their hair. I twirl my hair, my mom clicks pens.” She stated that it would be called “self-stimulatory behavior if it was a child with autism” but maintained “no, she just likes to click a pen”.
So much focus is given to how we differ from those with disabilities, and the gap between their world and our world only grows with this type of outlook. Belinda said, “How are we different? Well, how are we the same? You might like the same tv show, same game, same potato chips. We have to teach the children not so much how they’re like us, but how much we’re like them. You have to look at it from the other way.” Belinda continued to explain in more detail about how she in particular went about bridging the gap. She said she made a conscious effort to understand their way of communicating, explaining, “Babies have a particular cry; mothers can hear the difference. If you work with a child long enough, you will get to know the difference.” She continued, “I may have to learn a child’s word for water and then teach them mine. It takes a little bit of time sometimes, it’s pretty much a guessing game until you figure that out. Trying to step in and figure out how do I get into that place in your world? It’s kind of a strange situation to be in.. I think children understand more than what we give them credit for (but) they may not be able to vocalize it to you.” She talked about a cousin that she has who has a speech impediment but is “neurotypical”. She said he has difficulty communicating with his family and gets frustrated to the point of crying. Belinda takes time with him, slows down, and works with him to understand what he is trying to communicate. She compared this to working with children with autism. She said, “We figure out what they want, and then we teach them how as a society we say (things).”
Belinda concluded her thoughts by comparing children with autism to neurotypical children, saying, “We make kids every day go play kickball. I for one have always hated kickball. It’s not fair. (If they are adverse to it), they’re in some respect, totally typical kids.” She also said, “I think that people need to remember that children with autism are children first. You are a child first, everything else, your diagnosis, where you’re from, your socio-economical status, that’s second, you’re a child and you’re gonna wanna do some child things.”
Theme #3 – Spiritual Aspects of Autism
“Souls in a high state of advancement are often found in humble circumstance on Earth” – Dr. Michael Newton (Stillman, 9).
William Stillman introduces this idea, that individuals with autism have a spiritual existence and extraordinary abilities on this Earth, although he does not support that every individual with autism has spiritual abilities or “angelic” presence. One could argue that individuals with other disabilities, and also those without disabilities could be called “angelic” or possess an innate sense of being spiritually connected. The idea I discuss here is merely uncovering another possibility for not only the existence of autism, but also a major contribution that individuals with autism can offer the rest of the world. Quite understandably, this may come across as delusional or “out there”, and speaking about this information comes with some risk. An argument that I stand behind in choosing to divulge this information is to just give it a chance. What harm can it do you to consider this to be truth? If you decide that it is undesirable for you to believe, there is no harm done, only information was presented for you to consider. Simply view it as “a unique and glorious facet of the autistic experience” (Stillman, 12).
My interviewees each had unique examples of how spirituality was connected to autism in their lives. I asked Belinda if she thought people with autism were “trying to tell us something”. She replied, “I think it depends. I think at some point I like to know what’s going on in other peoples’ heads. Once children mature, you can ask them, they’ll tell you.”
Jack’s connection to spirituality was that he attended a college where he received “a degree in Bible”. He was involved in a dance ministry that focused on “prayer and learning moves”. He described it as “dancing for God basically”. He said the “ministry had a meaning” and mentioned, “I’m learning stuff but at the same time maybe growing closer”. He also wrote a paper while in college that aimed “to bring an awareness”. He explained, “it was Christian awareness”. He someday hopes to start a ministry like they had in his college.
Anna has very direct personal experiences with people with autism who have a very special spiritual connection. She came from a place where “it was all about making them come out of this fog that they were in and making them accommodate our world, you know, talk like us, act like us, behave like us, think like us.” She says, “I just knew, I knew from my own communication with these children intuitively, that’s not what they wanted, that’s not why they’re here. Our acceptance of their world is why they’re here. It’s kind of like a big lesson I think we’re being taught.” She explains that she began having “some form of vision” where she “was allowed to receive messages from the children and some of the adults (she) worked with.” She explains, “As I touched them, I was able to gain sentences intuitively from the children most of which I would say would be labeled autistic and they were messages of spiritual content, that they in fact, they were messengers. They were a bridge between the heavens and this solid earth that we’re living on and in a way they were being treated by God as angelic messengers. He’s given them a huge burden, he’s broken their bodies, he’s broken their mind. When you give somebody a burden, you allow them to be on a higher level than anybody else.” She stated, “I do feel that these individuals are messengers and if you listen very carefully, you get something from them.”
Although Anna is “a big believer in the mystical side of life”, she is skeptical of those out there who are using individuals with autism for their own spiritual purposes. She talked about current practices in Israel, which I later found out are known as “Facilitated Communication” or “FC”. Anna said she had “a nervous sense that this could be manipulation” and goes on to further explain her own experiences saying, “In my case, these messages are very pure, very basic, they don’t happen all the time, there’s been waves. (They) acknowledge God and the angels, but not right or wrong or pieces of the Bible”. She even testifies that she “kept pushing it away” and didn’t understand at times what she was being told. She speaks of one instance where she was being told to tell the story of “their burden”. She said, “They were giving me actual visual images in my head of what was needing to be told in this story, even the music was being given to me and there was an amazing amount of angelic presence, including one night where the whole ceiling was covered in angel wings.” She said she “felt the presence of so many angels” around a student one night during a performance. She said, “It was an incredible time of messages and just visions going on between me and the children.” During this time, Anna was experiencing migraines and chronic back pain. She spoke of how she knew of examples in history where individuals who had visions also experienced migraines. She testified that “the physical illness.. stopped once we started doing the play. The pain had no purpose anymore.” She explains how she feels she was “chosen” to do this sort of work with autistic children, particularly because she has experienced “breakthroughs” in her work.
I questioned Anna about whether or not she felt those with autism are on a higher plane than the rest of us are. Anna said, “You can look to any of the religions and each one talks about the higher soul, the shaman in Hebrew.. I think we all really know but maybe some people it’s hard to accept. I think when you’re already stepping onto the spiritual path you’re much more open to the auras and the vibes to any human being who’s on a high spiritual level so that gives you a head start absolutely, but they can also bring you to a greater level.” She explains how she “was far from (her) religion” at one time and “they brought (her) back to it”. They reminded her of “the concept of God being fully in control.” She also said, “They really held my hand and took me through the steps I needed to go through to return to my heritage and my religion. I’ve always thanked them for it and now that I embrace my religion, I see the incredible level of these children.” She said, “We are living in a world right now that is so far down there. These children are there to try to bring us up that ladder.” So is that one of their purposes in this world? Could this be an explanation for why there is a higher rate of children with autism in the world now? If you look around at our world, with the media influencing youth in a negative way and crime rising, this is a possibility that could make perfect sense. I think it is a very real possibility that we as a society could gain from this spiritual perspective, even if we don’t all subscribe to a belief in God or a higher power influencing us. Anna says, “I think God was saying to me, ‘I want you to see what these children have to go through…so you put your heart and soul into your performances’.” So what if we believed that God [or insert your belief here] is trying to reach us in these moments of small miracles here on earth? Could we at least believe that individuals with autism might give us more clarity and understanding of our own lives and our own purposes in this world? Referring to her own work, Anna believes so, saying, “You do feel that you have the ability to set a soul on the path that they’re really meant to be on.”
Throughout my process, I had epiphanies that all the findings that were surfacing were interconnected in an almost divine way. I started to see a sub-theme emerge, that is now known as Theme 3.1 – “No Coincidences”. The book I used as one of my sources for this study by William Stillman, Autism and the God Connection, I purchased years ago but never read. Now that Anna’s interview reflected so many spiritual themes, I decided to pick up Stillman’s book and investigate more about what he had to say. Surprisingly, his words completely supported what Anna told me. The mere fact that I was even connected to Anna, Belinda and Jack in one way or another seemed to be no coincidence as well. They all came into my life at different times, but all have some sort of connection to a part of my past. For example, Jack and I both lived in another state and worked at the same location in that state, doing the same job. At this job, we experienced some of the same personal experiences and reactions to the work. When we met years later, we discussed how we already had that connection from our pasts. I feel that I cannot dismiss these epiphanies as coincidences in my life.
Theme #4 – Fears
“Often, our fear of the unknown precludes us from accepting that which we cannot readily discern.” (Stillman, 14).
William Stillman goes on to describe how we do not have factual proof of what love is or what the human mind is, although we know we love and we know we have a brain. He writes, “the multisensory blessings of the person with autism should not be so casually explained away simply because traditional science finds them immeasurable” (Stillman, 14). Again, if certain individuals or society as a whole has the inclination to shut the door on these individuals, how can they prove their competence, individuality and significance? Are we as a society afraid of the beautiful person with autism? Do we fear what we don’t understand, are confused by, are threatened by, is too “different” from us, or might have a purpose that we don’t have? All three interviewees said phrases such as “confused by”, “don’t understand” and “threatened by”. This demonstrates our fear toward the autistic person.
Jack discussed a sort of character he assumed in high school, the “giant”. Jack is a tall man with an average build. He told me he “thought people viewed (him) as a giant and a sort of scary guy”. He thought, “Maybe they were threatened by me”. He went on to say, “I think maybe they were just threatened by me, honestly whether it was because I had better grades.. I would be a threat to a clique.. I don’t know, I’ll never know. I think when people are threatened they just kind of close you off or they maybe already assume you are and I kind of was.” Jack also mentioned his own fear of others. He said he was “afraid people would kill (him)” and that “people don’t understand”. The reason he wrote the paper about awareness in college was so people could understand a bit more about who he was. He explained, “I felt threatened by those who were cooler than me or had bigger egos” and imagined them saying things like, “If you even try I’ll kill you or whatever”. No one ever said this to him, but this is what he internalized.
Belinda spoke about the fears of the educational system, stating, “if the child has a diagnosis (of autism), they automatically need to go to the school over here, the only school that can handle them, but the child might not be so severe. It needs to be a case by case basis.”
She also spoke about the fear that occurs in the general public. She talked about times where she had “been asked to leave stores because my child might be tantrumming in the store.” But she emphasized “the loveliness of the Americans with Disabilities Act” in response to this. She even went on to explain how at times it was “not the child’s fault, sometimes it’s my fault”. She said, “every child behaves like this. That’s what children do in general.” She even said she might throw a tantrum at the mall if she was there all day and was hungry and tired. She expressed her concern for parents of children with autism who experience this same sort of reaction in stores, and offered a solution. She reflects, “I don’t think people think to say to the parent are you ok? Do you need help? Its frustrating to have all those people looking at you like you did something wrong. You’re just trying to parent your child. You might not know anything better to do. If you know someone, if you can help, ask if you can help instead of (saying) ‘they just need to take their kids out of the mall’.”
Anna spoke about certain fears that individual educators had concerning her company, particularly because she employs alternative methods with autistic children. Educators seem to fear the different, the unknown, when it comes to practices in their schools. Anna said, “I think some of the professionals in special education could probably benefit from having training in arts education so that when we do go into the schools it’s something they’re not threatened by, that they actually see it as something that can go along with instruction and mobility and all those other methods that they’re using.” She said her company did not have that many negative experiences, but she did recall one time a number of years ago. She explained, “There was one when we first came where an art therapist in a very renowned school, mainly for autistic children, absolutely did not approve of us because I was not clinically trained or I wasn’t a movement therapist and really did not approve of a company saying that it was using a therapy technique it had created. She was actually able to remove us from that school, even though the directors and psychologists really did see what was happening to their autistic population after every show. Unfortunately she was able to just make everybody feel a little bit fearful of this uncertified company in a way.” She talked of other situations where she encountered “a lot of teachers who are sitting back who really don’t understand what is going on. They don’t understand why we are approaching autistic children, invading their space. Autistic children are normally tactile defensive. They don’t understand the loud music, because autistic children have a low tolerance for noise. All the things considered taboo for the autistic child, we’re in fact doing.” She went on to say, “they do put up a defense, they do sometimes pull back. We have to keep educating them, showing them through example, why these methods do work, even though of course it’s very controversial, because we’re going against the wave of what people believe autistic children can cope with.” She felt it was more about how “to accommodate the needs of these children, not the needs that we have as a society or culture.”
She spoke of others she had encountered who had adverse reactions to someone with autism, and she emphasized how she did not understand why this occurred. She took note of the struggles of individuals with autism saying, “the autistic child is not just struggling with their own daily challenges but they’re struggling with the way other people perceive them.” To make sense of this, Anna said, “I think people are so confused by the autistic person, especially the adult. People don’t know how to communicate with them, be around them in a social setting.” Anna sympathized with people with autism, recognizing their burden, saying, “It must be very hard for them.” She was positive, particularly due to her company’s success in battling those fears within society. She exclaimed, “we’ve been able to inspire many young students understand these children are not in a fog, they are these unbelievably amazing human beings who just happen to exist in a different way from others.”
Anna also talked about adverse reactions of the media. Although her company is creating positive experiences for autistic individuals, she said, “I’m convinced the general public is not going to have access to this other point of view. The media doesn’t want this to be seen.” She recognized that the focus was more about what the “remedy” to autism is. She stated, “It’s always about the solution; how do we reduce our autistic population- it’s never about embracing them, never about celebrating what they bring to us. It’s always the statistical data to scare everyone to go ‘oh my god, the next child I have is going to have autism’. You hear it all the time. They call it an epidemic. When I hear that I’m like, are you saying it’s a plague? (It’s like) AIDS. They called that a plague.” It is difficult to hear this, especially because Anna’s company emphasizes the “beautiful accepting side of autism” and strives to “allow it the way it’s meant to be”.
She even talked about the fear that professionals have who are in fact her co-workers. She feels isolated at times, even in the school she has been working in for years. Anna said, “Even they’re scared to show us to the world.” I wondered where that fear came from, and Anna responded with, “If I was on a downer, I would say because so many peoples’ jobs depend on it being this disease that has to be cured. This school is full of hundreds of people whose job is to ‘normalize’ these children, make them fit for society where they are going to be accepted. It’s really not about providing for these kids and doing what’s best for them, it’s doing what’s best for us, our cultural society. So this school, like thousands of other schools, is built on that concept of keeping that fear alive.”
Theme#5 – Contributions
“Many count their Asperger’s to be a blessing, because it does lend certain strengths to us that others do not have. We have great abilities for focus. We can concentrate on things that interest us to the exclusion of all else.. Most people with (Asperger’s) have great memories.” –Kate Goldfield, www.aspiefrommaine.webs.com
Individuals with autism have been known for specific interests and fascinations, which lead to proficiencies in certain areas depending on the individual’s interest. The movie Rain Man highlighted the “savant” abilities such as memorizing facts, cards and numbers. When a person with autism focuses their interests into productive learning experiences, they can move into careers and incredible contributions are made to society. William Stillman accounts for “the heightened awareness, innate gentleness, and exquisite sensitivity in a number of those with autism; that is, a capacity to perceive all things seen and unseen” (Stillman, 6).
Belinda spoke of a man with autism she met who was a rocket scientist. She stated, “That takes an immense amount of concentration and focus. I don’t have that. I could never be a rocket scientist.” She was amazed by this man and related it to expectations of the children she teaches and other children with autism. She maintained, “You can’t say oh, because this child has autism or he has Asperger’s or any other autism spectrum disorder, that he’s going to be institutionalized and there’s no hope for him, whatever I don’t wanna hear that. If you think about back when you were in school, that child who was a little quirky, a little bit different from the rest of us, had his own twist on things, perfectly normal adult right now. You can’t say a child with autism spectrum disorder can’t do anything else.” She also gave personal examples of her students that were exceptionally good in certain areas, such as having gymnastic skills, music, literacy, math and other special skills. She said, “They have an uncanny ability when they’re good at something, just like everybody else, you have some people that are excellent at music and some children with autism who are excellent with music and that’s their thing. There are certain areas you’re really good in. My thing is music.. (but) don’t say to me we are going to read a book.” As a solution for ways to support these incredible contributions of children with autism, she offered, “You have to teach people what their things are and have them experience different things, so you don’t wanna restrict a child – give them a chance to try something, if they don’t like it, let ‘em try something else, and you might wanna come back to that thing when they’re older or a little more mature, and I think that’s what parents have to remember and the adults in the situation have to remember. You have to figure out what their thing is.”
She also mentioned how some of her students were intuitive in remembering personal information about her, such as her birthday, names of her friends, and can tell whether she is having a bad day or not. She said “You can see it on your friends, they see it on you.” The question is whether this is a specifically autistic quality, or whether it is actually quite common among certain people that have an innate ability to be able to read others. Belinda even joked, “They remember my birthday and how old I am and I cannot trick them out of it”.
Jack described his contributions as “being very good in your given fields, that’s me, I exhibit a couple of them. I’m very stubborn I admit. I quote movies, I remember the craziest stuff. I exceed in my given fields, but social, it takes me some more time to adapt to certain things. People choose what they want to remember from conversations or any kind of events. That can happen to anybody, for an example, Rain Man, counting the cards, I think it’s all.. it comes with the syndrome. You’re good in your given fields. I think that’s definitely an advantage. He also said he was good at “memorization of events.. events around the world, history, personal events” and thought, “memorization is a good skill” to have.
My interviewees were recognizing so many contributions that individuals with autism had to offer the world. They had spoken toward breaking down some of the barriers between “normal” students and students with autism, so I wanted to find out more about how my interviewees felt about the idea of disability awareness classes for “normal” students. Anna said, “they are learning from those children, it’s not the other way around”. She supported awareness classes and exposing children at a young age to others with disabilities. She spoke about how she had done so with her own son and he now has incredibly positive reactions with children with disabilities. She said, “He grew up on an equal footing with the disabled. He never looked down upon them. He doesn’t see them as special, they are who they are. (Not) like ‘oh, I’ve got to be nice to them’. He treats them like he would treat his peers.” In support of disability awareness classes for “normal” students bringing them into the “world” of a student with disability, as opposed to inclusion of the student with a disability into “normal” classes, Anna said, “I think, turn it around. Make the non-disabled kids realize the privilege they have to be around these children.. to touch them, to embrace them, it’s only for our good too.” She also stated, “You can’t not like something unless you’ve experienced it. Give people the opportunity to decide what they think works the best. If you’ve never had any interaction with a person with autism, it’s gonna be hard to decide.”
Belinda spoke about a disability awareness class she wanted to teach at a local elementary school. The class ultimately was denied, as it was not approved by the parents of the students at the school. This crosses back over to my fear theme. She did mention that the Girl Scouts of America has a disability awareness class. The opportunity for increasing awareness is readily available, if only it would be allowed to take place.
To remain true to my phenomenological nature, I have included brief versions of a textural description, structural description, and explanation of the essence of what I found to be the lived experience of those individuals who are connected in some way to autism.
The three individuals I interviewed experienced adversity, enlightenment, and interconnections with the autistic experience. They all had positive and negative experiences with others who were more or less uninformed or unaware of what it meant to be autistic. My interviewees’ statements concerning the negative experiences stood out as being profound and influential in their lives. They each were able to resolve these experiences for themselves, as I understand. They each experienced a connection with the question of whether or not autism was seen as making a person disabled or whether it implied a person had extraordinary abilities. They each experienced some sort of spiritual and personal connection. They all also described the autistic experience to be one that creates confusion, threat, and misunderstanding.
My interviewees’ experiences occurred in a variety of settings, including school systems, home environments and personal encounters with others in public places. Their experiences occurred in everyday situations that made an impact on my interviewees in some way. At times, they were outsiders to the experiences, as observers witnessing others going through adversity or enlightenment, for example. Other times, they were insiders to the experiences, witnessing firsthand what it meant to feel the effects of autism.
Essence of the Experience:
From the three interviews and background research conducted, it is my understanding that there are some commonalities between individuals who encounter autism in some way in their lives. Individuals connected to autism either personally or professionally have come across issues with autism being seen as a disability or disadvantage, rather than the focus being placed on the abilities or advantages of an autism diagnosis. They have experienced a predisposed notion of those with autism living in a different world than the rest of society, but they themselves were unable to see how the two worlds were in fact different. They have encountered some sort of spiritual instances when it came to being in the presence of those with autism. The individuals connected to those with autism have witnessed the fear that appears in others who do not seem to understand or have the ability to connect with autism like the individuals themselves have. Finally, they have seen the amazing, undeniable contributions that those with autism can offer the world and they see the need for the world to gain awareness and greater understanding of autism.
“We need to have genuine experience with people from other groups: people of different races, people who are disabled, and so on. That, to me, is the only real way I can think of that you can battle racism or any of the other ‘isms’. Once you have personal experience with people from a group of people that is positive, you won’t be as likely to think negatively of that group without good reason. If you do, you will not be as likely to apply those negative thoughts to a whole group of people. You need to engage with these people in a genuine and not superficial way to see their true selves.” – Kate Goldfield, www.aspiefrommaine.blogspot.com.
I fully support that we should connect with those who seem different from us, as Kate Goldfield suggests. In a recent conversation with a family member of mine, the idea was conveyed to me that my family member felt importance in connecting with people with autism, possibly in order to soften one’s heart. I brought up my findings on spirituality and my family member thought that God might use autistic people to do just that – soften our hearts. Is there a divine reason for increased incidence of autism, which is recently in the statistical data being highlighted in the news broadcasts? In speaking of her brother who is diagnosed with ASD, one individual in my research stated, “We get to understand more about other people.” She said that if she didn’t have her brother, she “wouldn’t know what autism means.. But I have more knowledge in that area, and about autism.” (Petalas et. al, 391). Divine intervention could be one explanation. Even if the person with autism’s purpose is to teach us to be nicer to each other and accept each other, isn’t that beautiful, wonderful, and enough?
From my emerging “Theme 3.1”, I found three biblical scriptures that seemed to convey the essence of these ideas:
If the world hates you, keep in mind that it hated me first. If you belonged to the world, it would love you as its own. As it is, you do not belong to the world, but I have chosen you out of the world. That is why the world hates you. – John 15:18-19
Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. – Hebrews 13:2
Through patience a ruler can be persuaded, and a gentle tongue can break a bone. – Proverbs 25:15
The first is a passage where Jesus Christ is speaking to his followers. I thought of this passage because of the reference to differing worlds and the nature of being “chosen” for a higher purpose. The second scripture gives advice for treating those who are different with kindness. The last offers an idea that by gently spreading a message such as the one I have discussed in this study, we might be able to persuade others about the wonderful side of autism that is so often covered up, neglected, unseen and unheard.
Speaking to my fears theme, I think confusion is a form of fear. If we fear the unknown, or are confused by it, we might not react positively in specific situations. This is why I support disability awareness classes. With increased awareness, we might be able to combat this fear.
With further investigation into this arena, this particular study could easily become a grounded theory project. It would be interesting to interview twenty to thirty people to determine if the experiences discussed here are more prevalent among other individuals who have no prior experience or understanding of the ideas posed here.
All of my five themes connect to each other, as you can clearly see overlap between ideas. For the purpose of this study, I separated some of these ideas, but when put together, one can gain the essence of the autistic experience. I feel the need to share this information with the public, as it is near and dear to my heart. I wish to share it gently because it is indeed hard to hear and some information that I discovered may not be for the faint of heart. I know that this study is only the beginning to understanding the autistic experience, and I look forward to engaging in similar studies in the future in the hope to someday understand as much as I possibly can about how I myself connect with autism as well as how the rest of society can better connect with autism.
Ashby, Christine E. and Julie N. Causton-Theoharis. “Disqualified in the human race: a close reading of the autobiographies of individuals identified as autistic.” International Journal of Inclusive Education. 13.5 (2009): 501-516.
Creswell, John W. Qualitative Inquiry and Research Design. 2nd ed. Thousand Oaks, CA: Sage Publications, 2007.
Goldfield, Kate. Aspie from Maine. 2010. <http://aspiefrommaine.blogspot.com>.
Goldfield, Kate. Accepting Asperger’s Syndrome. 2007. <http://aspiefrommaine.webs.com>.
Petalas, Michael A., Richard P. Hastings, Susie Nash, Alan Dowey, and Deirdre Reilly. “I Like That He Always Shows Who He Is: The perceptions and experiences of siblings with a brother with autism spectrum disorder.” International Journal of Disability, Development and Education. 56.4 (2009): 381-399.
Stillman, William. Autism and the God Connection. Naperville, Illinois: Sourcebooks, Inc., 2006.
Holy Bible, New International Version. 2010. Bible App for iPhone, <http://www.YouVersion.com>.
Creative Chance Original Presentation
The following images are from a PowerPoint Presentation that Founder/Director Amanda Taylor designed while at Goucher College. The full presentation was an original proposal for Creative Chance as a concept organization, submitted during an Arts Administration course. Enjoy taking a trip down memory lane and seeing some of Ms. Taylor’s original ideas!