I am not a big fan of “Awareness” months, but I am going to make an exception. I have a 9-year old grandson, Austin, who has Autism Spectrum Disorder. When I was in college a few years back I was required to write a paper for an English and Culture class. I chose to write about the difficulties people with Autism endure as they typically struggle with both social skills and communication. Autism is a spectrum disorder, no two people are the same. Each person is unique in which areas they are most challenged and to what degree.
Austin is doing well. He is in a special needs class in second grade. He is learning to read and has greatly expanded his ability to communicate and express needs since I wrote the paper. What people need to understand is that although people with Autism have learning difficulties, they are intelligent people who are misunderstood and frequently have their abilities underestimated. The trick is figuring out what needs to be done to communicate and get the message across to them.
I hope you will take the time to read the article I have posted below. I would love to hear from those who deal with people who are autistic, people who themselves are autistic, or anyone who has read and learned about the struggles these people encounter in their every day lives.
Learning to Live
in a Language Based World
Imagine you need something but are unable to formulate the words to express your needs. How do you get someone’s attention? How do you communicate your wishes? This is the frustration a person with autism spectrum disorder deals with their entire life.
Cultures throughout the world are based on verbal communication and social interactions. A person with autism struggles to learn language, has difficulty holding a conversation, and lacks social skills. The inability to communicate can leave a person feeling lonely and isolated. An autistic person’s ability to live successfully in a language based world requires them to adjust to living outside their comfort zone. To help people with autism accomplish that goal, society needs to develop an understanding and compassion for the needs, feelings, frustrations and learning style of people with autism spectrum disorder.
As many as thirty percent (30%) of people with autism are unable to speak (Apps for Autism, 2011). Children with autism are found to have hyper-acute hearing that creates an inability to filter out and properly process ordinary everyday sounds. Buzzers, alarms, a dishwasher running, a lawn mower being used, and all the other miscellaneous sounds that the average brain filters out may sound as if they are on a super high volume and jumbled together to the autistic person.
The inability to properly process auditory input results in an inability to understand the meaning of words, an inability to express needs and wants, and a lack of social skills that leaves the autistic person feeling detached and unconnected to “normal” people (Notbohm, 2005). As Temple Grandin, who is autistic, said “There’s nothing more frustrating than not being able to communicate” (Valentine, 2006, para. 11).
Ellen Notbohm, author of Ten Things Every Child With Autism Wishes You Knew, stated “The ability to communicate, whether through spoken language, pictures, signing/semaphore or assistive technology, is bedrock” (2005, pp. xvii-xviii). “Words are the essential building blocks of spoken communication…” (McGregor, 2008, para 2). A child who lacks social skills, including the ability to read body language and facial expressions, finds communicating and fitting into society very difficult. The autistic child often stands out in society as a social oddball (Notbohm, 2005).
Children with autism are considered social outcasts because they lack the ability to communicate verbally and display behaviors that help them cope within their environment. People make negative assumptions that a child with autism is unwilling to cooperate, temperamental, and lacking in intelligence. Autistic children are known for their “meltdowns”. A meltdown is an autistic child’s manner of communicating to the outside world that there is something wrong. The child can be hungry, thirsty, cold, tired, or any other range of things. The adult has to figure out what the trigger to the meltdown is because the child is unable to express their need. It is important to remember that behavior is a way of communicating, and that a child who lacks verbal skills is unable to tell you what is wrong (Notbohm, 2005).
As the grandmother of an autistic child I have witnessed meltdowns and how they can easily be remedied by analyzing what the trigger is. Meltdowns in public can be exceptionally frustrating when people who do not know the child feel free to make rude, insulting remarks about their behavior. When my grandson, Austin, was two years old I was trying to put him into his car seat and he was arching his back, crying and kicking. “All behavior is communication” and “all behavior happens for a reason” (Notbohm, 2005, pp. 21, 22).
Austin’s behavior was because he hadn’t said goodbye to grandpa, who had ridden to the park in a different vehicle. Austin’s behavior confused me; what upset me was a man parked beside us. As I lifted Austin out of the car during the meltdown the man said very clearly “what a spoiled brat.” Looking back I wish I had taken the time to express what I thought of his rude behavior and assuming comments about a child he did not know. The man’s behavior is best summed up by Temple Grandin, “Normal people have an incredible lack of empathy…they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown…I’m frustrated with the inability of normal people to have sensory empathy.” (Valentine, 2006, para. 24 ). A child who lacks the ability to communicate normally in a social situation needs understanding and assistance. They should not have to endure insults and rejection from adults.
It is important to create circumstances where the autistic child can practice social skills with success. “Social navigation is necessary at every turn in our lives: at home, at work, at school, in our travels about the community, in our shopping, recreation and worship.” (Notbohm, 2005, p. 71) It is important to understand that fitting into society socially requires a tremendous amount of effort from the person with autism. The autistic person must learn to cope with the demands of society while trying to understand what is expected of them and using what abilities they have to make those adjustments. (Notbohm, 2005).
In Ten Things Every Child With Autism Wishes You Knew the seventh item on the list is “Help me with social interactions” (Notbohm, 2005, p. xxviii). A child with autism may feel lonely and left out because they lack the social skills to enter a play situation or start a conversation. They may not be able to talk to the other children and are unable to read facial expressions, body language or emotions of others. It is easy to assume the child doesn’t want to participate in activities, but what they really need is guidance on how to join the fun.
The way to successfully teach a child with autism spectrum disorder is to focus on their positive abilities. The autistic child may lack the ability to process verbal information, but they are usually very good at paying attention and are visual learners (Gordon, 2007, para. 3). The sixth item listed in Ten Things Every Child With Autism Wishes You Knew is “Because Language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me.” This is followed by the seventh item, “Please focus and build on what I can do rather than what I can’t do” (Notbohm, 2005, pp. xxvi, xxvii).
A child cannot learn and function well in an environment where they are made to feel that they are not good enough. Often peers, teachers, siblings, and relatives focus on what the child is not doing, rather than what the child’s strengths are (Notbohm, 2005). A computer can help an autistic person with both learning and social skills. The computer is not critical and has unlimited patience, allowing the child to repeat skills as needed until the task is mastered.
The Apple iPad and other tablet computers are offering special applications that allow people with autism to communicate. By using pictures or characters on the computer screen the autistic person is able to make selections and use the computer to “speak” on their behalf. The computer allows the autistic person to voice their thoughts and needs, helping them to function in society.
A 60 Minutes episode called Apps for Autism: Communicating on the iPad featured the utilization of computer applications for people with autism. The use of tablet computers was demonstrated by Joshua Hood, 27 years old, who was unable to communicate until he received the Apple iPad. Joshua is now able to go to a restaurant and use the picture apps on the iPad to order his own meal. Prior to receiving the iPad Joshua rarely looked at people, but the iPad has given him the ability to interact with others. His therapist, Tammy Taylor, said “He’s part of the community. I mean, communication is the essence of being human. And here he is, communicating fully now” (Apps for Autism, 2011).
The use of computer applications is allowing professionals to realize how intelligent people with autism are, people that were once considered to have below average intelligence. At the Beverly School in Toronto, Canada half the students are severely autistic. The impact of the iPad is demonstrated by its effect on the attention span and willingness of those children to socialize. Ten year old Nuno does not talk and was believed to have the intelligence of a toddler. An iPad vocabulary application was used to test Nuno. The school was amazed at Nuno’s vocabulary and learned that he has a love of classical music and opera (Apps for Autism, 2011).
Whether a person with autism is learning to communicate through the use of a computer or through traditional learning methods, it is important to understand the stages of their learning and the need to guide them in developing social skills. Speech and language deficiency are defining characteristics of autism spectrum disorder, but it is important to remember that each person is an individual, with their areas of difficulty and ability to learn unique to them. An awareness of whether the person is mindful of being spoken to, if they try to communicate in any form, and whether they are attempting to use speech is important. If they are talking, are they speaking naturally or are they echolalic? A child that is echolalic will repeat sounds or words that are spoken to them, which indicates that the child can perceive and articulate speech (Gordon, 2007, para. 5).
A child that is using echolalia to communicate can create the impression that they are understanding and using language in a comprehensive manner, when in reality they are not. Temple Grandin was teased as a teenager because when she talked she reused the same phrases, and kept talking without letting other people respond.
Some people with autism do not have a problem with the mechanics of language, but they do not understand the process of having a conversation (Hamilton, 2006). Echolalia are messages that are memorized from the world to compensate for language deficits. These can be groups of words they have heard people say, or phrases from TV shows or movies. The person with autism does not necessarily understand what they are saying, but they know that a specific set of words can be used to provide a reply, ask for something, protest, or deny requests (Notbohm, 2005). This was used by my grandson when he needed help. It started when Austin would need assistance on the computer, he would come up and rub a person’s hand or arm and say “sorry”. We would respond “what do you need?” and taught him to reply “help on the computer”. It wasn’t long before that memorized set of words was used for anything he needed help with, be it the computer, opening a door, or getting something from the refrigerator. “Help on the computer” was a set of words that got someone to come and give assistance.
Whether a person with autism is learning to speak, using a computer for communication, or exercising echolalia to converse, it is important to remember that “…having a means of functional communication, whatever it may be, is what’s truly essential, to any child, but even more so to the child with autism” (Notbohm, 2005, p. 42). It is also important to reward the autistic child’s efforts to communicate in a positive way. My daughter always asks Austin if he wants chicken nuggets, then she makes the decision on whether to get him just the nuggets or a happy meal. A few weeks ago she asked Austin if he wanted chicken nuggets and he said yes. When she pulled into the McDonald’s drive-thru from the backseat she heard “chicken nuggets, French fries, chocolate milk, trick-or-treat”. His statement was rewarded with a full happy meal, all the items he requested in the Halloween trick-or-treat bucket. Verbal interactions and positive results help the child learn not only the mechanics of speech, but also how to use them to function in society.
Understanding the way an autistic person processes information and the way they are best able to learn is imperative to helping them fit into their community. Whether the person is able to converse, speaks in echolalia, utilizes a computer application, or demonstrates coping behaviors, it is important to recognize and accept them as a growing, feeling, human being who is trying to adapt to the world around them. As Temple Grandin said, “normal people find it difficult to put themselves in an autistic person’s shoes and see the world from their perspective” (Valentine, 2006, para. 4). For a person with autism spectrum disorder to live successfully in a language based world, society must learn to recognize the needs, feelings and frustrations these people experience on a daily basis and make appropriate accommodations for them to function within their community.
References
* Apps for Autism: Communicating on the iPad. (2011, October 23). 60 Minutes. New York, New York. Retrieved October 23, 2011, from http://www.cbsnews.com/video/watch/?id=7385686n&tag=contentmain;contentBody
* Gordon, B. (2007, April 2). Speech and Language Problems in Autism Pectrum Disorders. Retrieved from Kennedy Krieger Institute: http://www.iancommunity.org/cs/articles/speech_and_language_problems
* Hamilton, J. (2006, July 9). Autism Reveals Social Roots of Language. Retrieved from NPR: http://www.npr.org/templates/story/story.php?storyId=5503688
* McGregor, K. B. (2008, October 6). Learning Word Meanings. Retrieved from Kennedy Krieger Institute: http://ww.iancommunity.org/cs/articles/wordmeanings
* Notbohm, E. (2005). Ten Things Every Child With Autism Wishes You Knew. Arlington, Texas: Future Horizons, Inc.
* Valentine, V. a. (2006, July 9). Q&A: Temple Grandin on Autism & Language. Retrieved October 2011, from NPR: http://www.npr.org/templates/story/story.php?storyId=5488844
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Have we really done those children a favor? I don’t believe so. If a child never learns that sometimes life isn’t fair, that sometimes you win and sometimes you loose and that is okay, how can they learn to cope with the realities of life when they become an adult. They don’t. I think that is why we have so much violence, so many underachievers. They never learned to push for the top. It has been handed to them every step of the way.
Even with all those accomplishments there was still inequality. Equal pay for equal work was not achieved in 1980. Women still held was were termed “pink collar” jobs, meaning they still held the lesser level and lower paying jobs of secretary an clerk. Women earned 57% of men’s wages; women with four years of college earn less than a man with an 8th grade education.
But what is happiness? Happiness is created when a person has a deep sense of meaning and purpose in life. A persons satisfaction with their life, how they feel on a day-to-day basis affects their ability to feel happy. It is difficult for someone who does not struggle with the overall feeling of happiness to understand how others can lack a feeling of contentment that comes with being happy.
Holly didn’t question my thought process so much as ask me questions that steered me into making a better decision. She asked me, in my opinion, on a scale of 1-10 how much I thought Ron’s condition had worsened since I had checked him in 24 hours earlier. I said about a 6. Holly then looked at me and asked if I was sure I wanted to go home that night, and was I sure I wanted to be at work, because two minutes could make the difference in being there or not being there when he passed. I made the decision to stay and my sister-in-law, Cathy, said she would stay with me.
It was only minutes. I told Ron that it was okay, I would be okay. Ron took two more breaths with a wide space between and was gone. When I realized he was not going to take any more breaths I hit the nurses call button. When they heard me crying over the intercom one of them came in and rubbed my back as I lay there crying. It was so close they tried to catch Caroline in the parking lot but couldn’t.
So now we turn the page. It has been only two days since Ron passed. I am learning how to come home to an empty house. To move through my days without him here. I am adjusting, slowly.
--- LIFE IS A MELTING POT --- Grace Grogan...Writer, Photographer 