This “In Their Own Words” is by Hannah Fjeldsted, who has Asperger Syndrome. Hannah, a rising college senior, interned with Autism Speaks when she was in high school. You can learn more about Hannah in her essays, Living with Asperger’s Syndrome (Part 1) and Living with Asperger’s Syndrome (Part 2), which were featured on AutismSpeaks.org.
The American Psychological Association (APA) has recently announced a proposal to do away with the diagnosis of Asperger’s Syndrome in the DSM-V and instead group it with the Autism Spectrum. Under this proposed revision, Asperger’s will no longer be referred to as its current title, but will instead by renamed “high-functioning autism.” As someone with Asperger’s, I am strongly opposed to this proposal and I firmly believe that autism and Asperger’s should continue to be classified separately. This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s, it will cause further confusion and ambiguity in diagnostics, and it will attack the identity in which many Aspies, like me, take pride.
First of all, many Aspies already suffer enough from the negative stigma and stereotypes society holds against them. To call Asperger’s “high-functioning autism” or “a form of autism” will only contribute to this stigma. The label of Asperger’s at least gives observers the impression of intelligence and ability. But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently. Therefore, if people with Asperger’s are merged under the autistic group, brilliantly gifted and capable individuals could be unfairly stereotyped as incapable and unprofitable. Because it is a natural human tendency to stereotype groups of people, society tends to assume that all people with autism and Asperger’s are the same and fails to acknowledge the variations in the spectrums of these conditions. We Aspies are already dangerously stereotyped within our own group and to incorporate us into the autistic group will only generate more inaccurate stereotypes and misunderstandings about us. For example, many people with Asperger’s are not hired for a job or are denied promotion or advancement in an occupation because their employers assume that all people with Asperger’s are incapable of performing the tasks required. They might stereotype all Aspies as being completely inflexible, clinically hypersensitive to the sensory environment, or 100% incapable of getting along with or relating to their coworkers, without realizing that the Asperger’s symptoms vary according to the individual. Imagine how much worse this stereotyping will get when people with Asperger’s are placed under the same category as severely autistic people who never learn to speak, who never learn to independently tie their shoes or brush their teeth, and who need assistance with every aspect of their life. Imagine what other opportunities will be unfairly denied to capable Aspies who are only mildly affected based on the misconceptions society has about autism. The DSM-V proposal will do Aspies a disservice, not a favor because it will only exacerbate the damage that labels do.
Additionally, I also find the DSM-V proposal to be an act of insensitivity toward the adversity people with Asperger’s encounter. I’ve always been annoyed and offended when Asperger’s is referred to as “a mild form of autism,” which is how it will be classified under this suggested revision. Let’s get one thing straight. ASPERGER’S IS NOT MILD! As Tony Altman writes in The OASIS Guide to Asperger’s Syndrome, “Asperger Syndrome is a serious, lifelong disability that requires individualized expert intervention and should be treated as such. There is nothing ‘mild’ about the challenge people with AS face” (27). “You may have heard Asperger Syndrome described as mild autism, but as one mother aptly put it, ‘My son doesn’t have mild anything.'” Although we Aspies might have gifts and talents that severe Autistics don’t, that does not mean that our struggles aren’t real. In spite of our outstanding cognitive abilities, many Aspies have difficulty making friends, become lonely and isolated, and might even suffer from depression and anxiety. Many Aspies also struggle to find and keep jobs or live on their own, and face rejection and exclusion in an unjust society that puts too much emphasis on social skills. I have been able to overcome many of my social difficulties, dramatically improve my interpersonal relationships, and live a normal, prosperous life thus far. But, that progress did not come without years of hardship, exhausting work, blood, sweat, and tears. I had to get a lot of therapy to get to where I am now. The adversity associated with Asperger’s is indeed genuine and real and the APA needs to be more sensitive and considerate toward that adversity. Asperger’s should continue to be classified separately from autism because we Aspies have our own unique trials and tribulations that we work hard to overcome. Let us not pretend that Asperger’s is “easy” by calling it “mild autism,” “high-functioning autism,” and so forth.
I also believe that Asperger’s should remain separate from autism because a separate diagnosis is more logically accurate in my opinion. I don’t believe Asperger’s should be incorporated into the autism spectrum, but should be its own spectrum. In the DSM, Asperger’s shouldn’t be considered “on the autism spectrum,” but should simply be called “the Asperger’s spectrum.” Even Asperger’s alone can vary from mild to severe; In that manner, it really does have its own spectrum. As Karen Siff Exkorn wrote in The Autism Sourcebook, “Asperger’s is sometimes mistakenly referred to as high-functioning autism because children with this diagnosis tend to have average or above-average intelligence and typical or advanced language skills. But, in reality, Asperger’s is not high-functioning autism. The difference between a diagnosis of Asperger’s and high-functioning autistic disorder lies in the realm of communication. Because children with Asperger’s develop communication skills within the typical range for the first few years of life, they usually present strong verbal skills, which is not a component of Autistic Disorder” (21). Therefore, Asperger’s should be classified as its own spectrum of diverse and variable individuals with strong intelligence and verbal skills because strong verbal skills are a truly significant characteristic that distinguishes Aspies from autistics. I don’t think it makes sense or does any good to put a strongly verbal Aspie with an advanced vocabulary in the same category as autism when some autistics never learn to speak.
I also believe that the DSM-V proposal will make diagnostics more ambiguous. If we incorporate Asperger’s into the autism spectrum, the spectrum will only get wider and it will be more difficult to assess the severity of this disorder in its future victims. Some supporters of this proposal have argued that it’s more productive to eliminate more labels and divisions, but I believe the contrary is true. I like it when there are more specific labels and divisions in diagnostics because it increases specificity, clarity, and simplicity and I believe that future parents of autistic or Aspie children will benefit from this specificity. If Aspie children are only diagnosed as “autistic” and are no longer given a separate label, that title will raise more questions like, “What form of autism does this person have,” “How severe is it,” “What are the extent of the symptoms,” etc., The generality of the autism label will give parents less guidance about the proper interventions to take for their child’s best interest. The spectrum will become so ridiculously wide that the parents won’t even know where to begin helping their child. But, a title of Asperger’s is much more specific and raises fewer questions. A separate diagnosis of Asperger’s will give future parents a much better idea of which direction to take to meet their child’s specific needs. The more divisions we have in diagnostics, the less ambiguity we have and the more precision there is. Greater precision and clarity yields greater accuracy, efficiency, and productivity.
The most personal reason I am against this DSM-V proposal is that I consider it to be an attack on my identity and I’m not the only Aspie who believes this. Asperger’s is indeed part of who I am and I have grown to become proud of that title. I take great pride in my positive aspects of Asperger’s, like intelligence, memory, and vocabulary, and I do not want those gifts to be overshadowed by merging them into a title that is perceived to be more negative. Besides, many respectable and inspirational figures, like Albert Einstein, Wolfgang Mozart, Marie Curie, Thomas Jefferson, and so forth are believed to have had Asperger’s. Many Aspies, like me, are honored to be associated with such geniuses and it would be a shame indeed to have this sense of pride taken away. We, Aspies, are unique in our own way and not “just more autistics.” I wish the APA would honor this uniqueness we hold dear. I will always refer to myself as someone with Asperger’s, no matter what any individual or organization says. If you’re an Aspie who’s determined to protect your identity or if you’re simply concerned about the ramifications of this proposal, stand with me and oppose DSM-V.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.