Why Change Is Necessary
Inhibited communication taints the reality of children on the autism spectrum and confuses those around them. Children with autism are often misunderstood in their attempts to communicate, resulting in the labeling of misbehaviors. It is important for adults to consider what behaviors could signify instead of assuming noncompliance. Attempts to stifle behaviors through the creation of behavior plans might obstruct a child’s desperate attempts to be understood. Adults who struggled throughout their childhood due to autism are now speaking up to bring about better understanding and more compassion. Parents of children on the autism spectrum are sharing their stories to let others know that they are not alone and that there is hope. Personal accounts of struggle and success are practical and inspiring.
Reconsider the Significance of Behavior
Observing behaviors without in-depth analysis often leads to frustration, anger and misunderstanding. Strock (2004), featured author in the National Institute of Mental Health, said that without meaningful gestures or the language to ask for things, people with autism are at a loss to let others know what they need and may simply scream or grab what they want. Screaming or grabbing might be desperate attempts to communicate that are stifled by enraged parents who view these actions as defiant. If children with autism are not taught how to express their needs, they will continue to act and react in the only ways they know how. Each persons preferred expression is unique and attention to each child will help to discover the best individualized approach leading to effective communication. The use of interests and passions as communicative tools is encouraged to engage children.
The Center for Autism and Related Disabilities of the New York State University of Albany affirms that difficulties with communication may look like behavior problems and reminds adults that challenging behaviors are not inherent for children on the autism spectrum. If adults are justifying or dismissing behaviors because a child is on the autism spectrum, they are missing critical messages and putting the child at risk. In “What Do We Know About Autism?,” Doctor Mishori described a two-year-old boy who threw tantrums making it impossible for his family to go anywhere together. The mother of the young boy felt lost until early intervention that helped her son learn how to speak and communicate which opened up his world. If a young child on the autism spectrum is displaying presumed “disobedient” behavior, proactive assistance will consider the child’s perspective and possible helpful interventions.
If people are frustrated while working with children on the spectrum, just imagine what the children are experiencing themselves. It is not easy to be repeatedly misunderstood and possibly penalized for failed attempts of navigating and participating in a confusing world. William Stillman, author, consultant and presenter on Autism and Asperger’s Syndrome (2007), said to consider what life would be like if you could never retrieve the words you wanted when you needed them and you always seemed to be grappling with overwhelming or frustrating circumstances that caused you to react in extreme ways as the only option. Stillman gives three explanations for extreme reactions which are the inability to communicate in ways that are understood, the inability to communicate one’s physical pain and the inability to communicate one’s mental health experiences. Is a sudden frequency in tantrums a child’s expression of illness or infection? The change in behavior is significant of a change in the child’s reality.
How Adults Can Facilitate Healing, Growth and Progress
Doctor Thomas Insel, the director of the National Institute of Mental Health, said that beyond raising awareness, families have become the real experts on this disorder having to figure out how to cope with a child who becomes explosive, disruptive and who could have a meltdown at any moment (Kantrowitz & Scelfo, 2006). Insel said that parents become highly skilled at knowing what helps. The enhanced knowledge is dependent upon patience, flexibility, empathy and practice. It is through these elements that parents are often forced to address the issues challenging the lives of their children. Hans Asperger said, “The teacher who does not understand that it is necessary to teach autistic children seemingly obvious things will feel impatient and irritated (Strock, 2004).” Just as children who are not on the spectrum must be taught how to behave, children on the spectrum need guidance in mastering their environments and self-control. Instead of viewing actions as misbehavior, it is more valuable to see what a child’s conduct could be communicating.
George Washington University anthropologist and father of a daughter on the spectrum, Roy Richard Grinker, said that the more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into the community life (Kantrowitz & Scelfo, 2006). Stillman (2007) said to perceive a person’s humanity instead of focusing on a diagnosis or way of being. It is due to this approach that Grinker believes that his daughter would today be described as the one who plays the cello and who’s smart about animals, rather that the description that would have been given ten years ago describing her as the one who talks to herself and flaps her hand. Kantrowitz and Scelfo (2006) attribute the shift in description due to increased awareness of autism resulting in more meaningful identities for people on the spectrum. Encouraging education and sensitivity in relation to the autism spectrum might ease conflicts encountered during socialization and foster a more supportive environment.
The Challenge of Teenage Years
Judgment and criticism from peers increase during adolescence. Strock (2004) said that as people with autism grow up, they can become increasingly aware of their difficulties in understanding others and in being understood, which could result in anxiety or depression. Teenage years are anxiety provoking for most people and when anxiety is combined with multiple perceived failures, the chance for depression is increased. A mother of a teenage boy on the spectrum said that when you’re socially odd, people are afraid and they want to get way from you by crossing to the other side of the street (Kantrowitz & Scelfo, 2006). New environments are often difficult for children or teenagers with autism. One mother described her teenage son walking into a new store that had severe fluorescent lighting which within ten minutes caused him to wet himself (Kantrowitz & Scelfo, 2006). Sensitivity to environmental factors increases the need for anticipatory preparation. Sensory challenges in combination with emotionally charged events have the potential to heighten anxiety. One precautionary approach for teens whose increased awareness has resulted in augmented anxiety is to tour new places before significant introductions. At a new school or college the buildings, teachers, aides, library, and additional resources can be introduced in a less threatening manner than a structured orientation for all new students.
Stillman (2010) stressed the importance of recognizing a child’s handling of self in challenging environments and provided an example of a child in a store with a crying baby. If a child or teen on the autistic spectrum finds a way to cope in a taxing environment, such as a store with a screaming baby, acknowledging this accomplishment helps them to recognize how their behaviors influenced the situation while bolstering their self-esteem. Coping may require several attempts and incremental exposure to demanding settings. Each improvement, no matter how slight, should be recognized and praised to be of most support and encourage future efforts.
Threat of Abandonment in Young Adulthood
The future of children and teenagers on the autism spectrum is uncertain as people strive to understand their needs. Kantrowitz and Scelfo (2006) said that most government-sponsored educational and therapeutic services stop at the age of 21, and there are few residential facilities and work programs geared to the needs of adults with autism.
A discouraging lack of supportive services for young adults cannot be ignored. Lee Grossman, president and CEO of the Autism Society of America said, “Once they lose education entitlement and become adults, it’s like they fall off the face of the earth’ as far as government services are concerned.” As the prevalence of autism rises, the need to prepare for a future adult world that embraces and supports those on the autism spectrum is increasingly necessary. Doctor Mishori (2008) supports that the road ahead for people with autism depends on the attitudes of the rest of us and our willingness to create opportunities for jobs, for education and for inclusion. This concern should not be dismissed as someone else’s problem, as it will become everyone’s issue once parents currently caring for and assisting their children are no longer an available resource. It is a potential threat that individuals with autism will be erroneously placed in nursing homes as a form of care that does not recognize their capabilities, is disrespectful of their needs or disregarding of their humanity.
Kantrowitz, B. & Scelfo, J. (2006, November). What happens when they grow up. Newsweek, 46-53.
Stillman, W. (2010, April 14). Demystifying autism. [Live presentation]. New York: Anthony’s Catering Hall.
Strock, M. (2004). Autism spectrum disorders (Pervasive developmental disorders). NIH Publication No. NIH-04-5511, National Institute of Mental Health, National Institutes of Health, U. S. Department of Health and Human Services, Bethesda, MD, 40 pp. https://www.nimh.nih.gov/publicat/autism.cfm
The Center for Autism and Related Disabilities of the University of Albany, State University of New York. Understanding and supporting students with ASD. https://www.albany.edu/psy/autism
Recommended Reading and Resources
Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker