“Labels don’t make you happy…” says the surprisingly wise Zombie in Wreck-it Ralph, and it is true. Labels limit you. With that in mind, Asperger’s and other neurological diagnoses should be told only to the parent or legal guardian while the patient is young. Novelist Benjamin Nugent, who was misdiagnosed at 17, ponders:
“If I had been ... given the diagnosis [of Asperger’s] at the more impressionable age of 12, what would have happened? I might never have been able to write about social interaction, having been told that I was hard-wired to find social-interaction baffling.”
When you are told that you have a disorder, you begin to doubt your ability to overcome your difficulties, you begin to believe you cannot do any better than you are doing now. This mentality prevents any child from progressing or overcoming challenges; whether they are neurotypical or do indeed have a mental disorder. This prompts them to begin to excuse themselves by shouting “Asperger’s! Asperger’s!” (Page) whenever they misbehave. In one extreme case, the “Aspie,” a young man named Tom was erroneously given “a card describing [his] condition [to be kept] in his wallet so he [could] take it out and show it if he [got] into trouble,” (Mestel). This way of evading responsibility prevents a person from developing a healthy sense of accountability for their actions and their inevitable repercussions. The power of the mind is incredible; you can do and be whatever you set yourself to. This includes convincing yourself that you have a neurological condition, such as Asperger’s. Whether you legitimately do have Asperger’s (or any other neurological disorder) or not, the diagnosis itself does nothing to help you overcome you quirks and social issues. When interpreted as a life-long excuse to sit idle and allow certain weaknesses rule your life and choices, it becomes a dangerous hindrance to progress.Therefore, a diagnosis of mild mental disorders such as Asperger’s should not be disclosed to the patient until he or she is mature. A diagnosis should provide a way of suppressing unwanted symptoms of a disease or disorder by suggesting means of addressing and resolving them effectively, which can be better achieved by a responsible adult and guardian.
The negative effects of a misdiagnosis may outweigh the benefits of a diagnosis for mild cases, so diagnoses should be given sparingly, only to those who would get effective treatment, rather than a string of excuses. As psychologist Bryna Siegel, who directs clinical care at the autism clinic at the University of California, San Francisco, explains:
“until the publication of DSM-IV, very few people had heard the term Asperger’s. And when it came out, a lot of clinicians let their fingers do the walking in DSM. There were fully trained practicing clinicians who really didn’t have any idea what Asperger’s was. Everybody with Asperger’s got diagnosed with Asperger’s, but a lot of other people got diagnosed with Asperger’s, too.”
The increase in diagnoses, or “documented cases,” has sky rocketed in the past decade1 making many people question the authenticity of an Asperger’s diagnosis. This growth in awareness of mental disorders such as Asperger’s and many Autism Spectrum Disorders provides for a high rate of mis-diagnosis. The Syndrome has become “the hip, upper-middle-class disability to have” (Ames2) rather than a condition that can be overcome with the correct treatments and effort. Truth be told, the inclusion of the term Asperger’s Syndrome in the DSM-IV published in 1994 borders on accidental, “Asperger’s got put in at the last minute...There’s so much of a rush to get the finished book done and copyedited and out. Things happen.” explains Fred Volkmar, head of child psychiatry at the Yale–New Haven Children’s Hospital This resulted in a very loose definition of an already vague condition, creating a very broad pool of possible Asperger’s candidates.
“Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome. The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.”(Nugent)
If the case is severe enough to really affect a person’s life and a diagnosis would allow him or her to find help, the individual should be diagnosed with an autism spectrum disorder and as journalist Benjamin Wallace explains,
“the American Psychological Association has proposed to eliminate the Asperger’s diagnosis, folding it into the broader new all-purpose bucket of autism spectrum disorder. The thinking is that Asperger’s isn’t scientifically distinguishable from autism, and that a single diagnosis may help to combat the epidemic that is more diagnostic than real.”
Autism does not dehumanize individuals, and the stigma surrounding it and other mental disorders is staggeringly disproportionate to the actual effects such a disorder can have. “One thing I've realized is that everybody is a little ‘autistic,’” explains an “Aspie” in Tim Page’s Question and Answer-based article in the Washington Post. Struggling to get along with certain kinds of people, being interested in a certain subject more than another, getting stressed when things don’t go according to plan, these things are not abnormal. They are very human. We all experience these struggles and have to learn to deal with them. People who have conditions which fall under the Autism Spectrum Umbrella sometimes have extra difficulty in overcoming these struggles, but that makes them more human, rather than less. An ASD Diagnosis shouldn’t be feared, and the word “autism” isn’t dirty or negative. It’s a condition that can be overcome. ‘“My belief,” says an older man [diagnosed with Asperger’s] named Allen, “is it’s impossible to distinguish Asperger’s from high-functioning autism. It has more to do with where you get a diagnosis than the scientific criteria.”’ (Wallace) Officially including those who would be diagnosed with Asperger’s within the Spectrum may ruffle the feathers of some Asperger’s advocates and patients, the actual benefits of this arrangement will smooth them once again. If they look at all the new possibilities for improvement provided by this simply terminological change, soon they will see it was the right choice.
There are many organizations that recognize the unique abilities autistic individuals possess, and put “the autism advantage” to use. A Danish company “called Specialisterne, Danish for “the specialists,” [is based] on the theory that, given the right environment, an autistic adult could not just hold down a job but also be the best person for it,” reports Gareth Cook, journalist for the New York Times, who did extensive research on Specialisterne with the guidance of its CEO and creator Thorkil Sonne. Sonne noticed the special skills his son possessed at a young age despite, or perhaps more accurately, because of his autism, and “he slowly conceived a business plan: many companies struggle to find workers who can perform specific, often tedious tasks, like data entry or software testing; some autistic people would be exceptionally good at those tasks.” (Cook) Through Specialisterne, these adults are finally able to hold down jobs for the first time, and learn to be independent, more comfortable and behave appropriately in social settings. This is progress beyond what many “Specialisterne consultants” had been able to achieve, or come to expect to be able to achieve.
There are also treatments being developed to help those with autism to overcome difficulties closely associated with the disorder, such as a newly developed nasal spray containing Oxytocin. The hormone Oxytocin, the caring hormone, is released in a mother’s brain every time she breast feeds and helps build the strongest love on earth, between herself and her baby. Rob Stein, national science reporter for the Washington Post, explains that,
“When [the nasal spray was] administered to those with ASDs, the individuals were better able to maintain eye contact The study, involving 13 adults with either a high-functioning form of autism or Asperger Syndrome, a mild form of the disorder, found that when the subjects inhaled the hormone oxytocin, they scored significantly better on a test that involved recognizing faces and performed much better in a game that involved tossing a ball with others.”
The study shows that the hormone can significantly help improve social behavior in autistic individuals, including those with Asperger’s, and “the findings were promising and could lead to the first effective treatment for the central problems affecting people with autism.” Why, when these two conditions are so similar does separating them seems counter-productive and counter-intuitive, has this very divide existed for the past decade, perhaps preventing meaningful progress because of a terminological fallacy? If the same treatments are prescribed after either diagnosis, where is the difference? Merely in the name.
When dealing with neurological disorders, it is very difficult to discover the proper way to confront these problems and resolve them effectively when the details of the disorders are still being uncovered. The science behind these conditions is relatively new, and unexplored. As we move towards improving the quality of life those with Asperger’s can have we must re-evaluate the purpose of diagnoses, reminding ourselves that such a disorder should never be an excuse, but a solution to a problem. A diagnosis should only be given when the case is severe enough to merit medical treatment, to help the individual learn how to join the collective and repress unwanted behaviors. In an instance in which it will do so, an ASD diagnosis would better serve the individual, and therefore, the term Asperger’s Syndrome should be taken out of the Diagnostic and Statistical Manual, as is planned, in its forthcoming fifth revision, with its replacement being high-functioning autism, on the Autism Spectrum. This will allow for a definitive and more specific definition, quelling the disastrous over-diagnosis due to a loose definition that has occurred since 1994. The condition does not dehumanize those who have it, but simply make some things harder for them than for normal people. Teaching this will help to erase the misleading strong negative connotation the word Autism has been stamped with.
Humans fear the unknown, and the more and more we discover about ourselves and the world around us and our own bodies and brains, the more mysteries we find. Proper education and research, hard work and perseverance, these are the only true way to illuminate the unknown and overcome the fears we all have. Rearranging the terminology of Asperger’s Syndrome and tightening the definition will help in this quest to gain knowledge and conquer fear, leading us toward what is hopefully a brighter future, both for the neurotypicals and the “Aspie’s,” allowing us to progress together in our search for truth and improvement.
march 2013
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