ANONYMOUS: Diagnosis is not enough

Yale researchers recently made national headlines with a new study on the prevalence of autism. The paper, published in the American Journal of Psychiatry, was different from many previous studies. The researchers used a population sample in an attempt to capture the number of cases that were undiagnosed. To many, the results were surprising: 2.64 percent of the children were autistic, with two thirds undiagnosed. But given my own experience, I was not surprised at all. It was not until my junior year at Yale that I learned that I am autistic.

I suspect that many readers will be shocked by my previous sentence. After all, many assume that autistic people are retarded and unable to speak. While this may be true for the most extreme autism cases, many autistics are neither. The specific diagnostic label under which I fall, Asperger’s syndrome, can’t even be diagnosed in someone who is either retarded or nonverbal. While virtually everyone has heard of autism, most people do not understand what autism actually is.

The most important thing to know about autism is that every case is different. Autism is diagnosed on the basis of three criteria. But the way each manifests itself, if at all, varies greatly from person to person. The first of the criteria is special interests and/or repetitive behaviors. Many autistics have intensely focused interests in specific subjects, to a degree that others may find obsessive. The second is differences in social interaction. Many autistics will not naturally make eye contact, have difficulty interpreting facial expressions or tone of voice, or have less desire to interact with other people. The third is difficulty with speech. Depending on which of these criteria are met and how severely, an autistic person can be diagnosed with classic autism, Asperger’s syndrome, or PDD-NOS. These diagnoses are collectively known as the autism spectrum, and a person diagnosed with one is said to be “on the spectrum.”

While many people see autism as a defect or disease, others, including myself, disagree. We take an alternative view known as neurodiversity. We believe that autism has advantages as well as disadvantages. While the diagnostic criteria focus solely on aspects that are perceived negatively, people on the spectrum can have other strengths, such as excellent focus and memory. Even some of the items in the diagnostic criteria can have their benefits. For example, a special interest can lead to useful career skills. The Australian psychologist Tony Attwood has even written alternative diagnostic criteria for Asperger’s syndrome based solely on positive traits.

Unfortunately, people on the spectrum can face societal stigma. Over 90 percent of autistic youth experience problems with bullying. When autistic traits are visible in a job interview, qualified applicants are declined jobs. Even the diagnosis itself can bear unfair costs. The common phrase “lack of empathy,” used to describe the difficulty that many autistics have inferring the thoughts and emotions of others, has led to a misconception that autistics do not care about other people. Some even spread rumors that autism increases the chances of criminal insanity. In reality, it is common for an autistic person to have strong ethical convictions. The rate of violent crime among those diagnosed with Asperger’s syndrome is actually lower than among the general population. Amid this climate of misinformation, I find it necessary to write anonymously, in order to ensure that I am not subject to employment discrimination due to my diagnosis.

The Yale study found that almost two thirds of the children identified as autistic had an autism spectrum condition other than classic autism. That means they were high-functioning like me. I believe that this underscores the importance of raising awareness about autism, not simply buying “Autism Awareness” bumper stickers, but promoting true understanding of the full range of people that can be on the spectrum. Simply slapping diagnostic labels on more people will not make a difference unless parents, educators and community members understand what the labels mean. Only then can we give autistic children the opportunity to grow up as independent, productive and respected members of society.

The writer is a 2010 graduate of Ezra Stiles College. Due to the social stigma associated with his condition, the News will run this submission unsigned.

Comments

  • The Anti-Yale

    *known as neurodiversity. We believe that autism has advantages as well as disadvantages*

    My father, Robert H. Keane, was known as a taciturn man, even though he was a labor relations negotiator and vice president of a holding company.

    In retrospect, I believe his Calvin-Coolidge-speech-stinginess was what you call it here: “neurodiversity.” (I have long since offset and compensated for his lingusitic-stinginess. lol)

    I suppose he may have fit somewhere on the Asberger’s continuum, but who would such a diagnosis satisfy other than some statistician with an Asbergian-worship of DATA.

    Now that I think about it, by the time the digital revolution has unfolded, we anti-social, screen-hugging digital worshippers may all fall on an Asberger-continuum.

    PK

    • shuka

      anti discrimination of people on the autist-spectrum http://www.facebook.com/#!/groups/144861455602051/ we need to collect cases in order to make understand that discrimination of people on the spectrum or aspergers or other abilities that we have that differ to those of others- will not stay without consequences. there is lots of misinformation, lots of “oh- are u retarded?” statement/questions and many psychiatrists think they are allowed to treat us like exotic animals. we need to speak for us, to defend us and to work on us and to lend each other a helping hand by not being anonymous anymore. the reason why “they” are the “normal” is because of their numbers. they are majority. i am not sick nor criminal nor anything else. but because i am the minority “they” think they are allowed to point at me and tell me some fake data in order to make me the “Bad-one” and be the “good ones”. if the neurotypicals are so great and “not-retarded” why is everything in their world going so terribly wrong? stop being anonymous even if its hard.

  • River_Tam

    You are not autistic – you have Asperger’s. Someone who is “autistic” has Autism, which is one end of the Autism Spectrum. Do not say you are autistic, because you are not. If you were autistic, you would have known before college.

    Words have meanings, people.

    • penny_lane

      The people who are taking Asperger’s out of the DSM V think otherwise. (Though I agree with most of the folks over at the CSC who think this is a mistake.)

      Words do have meaning, but it’s pretty common in the psychiatric field to refer to someone with an ASD diagnosis as “autistic.” It’s a catchall description that refers more to the spectrum, high- to low-functioning, than the most acute version of the disorder.

    • anotherperson

      Aspergers Syndrom is autism in the same way that someone who is “slightly” dyslexic is still dyslexic. It is the same disorder, only a slightly milder degree of it. And there are many people who are indeed autistic, who where never diagnosed before college, or even far into adulthood. Words do have meanings, and Aspergers means Autism.

      • shuka

        its not important to be categorized. what we “aspergers” run away from is this stupid word “disabled” – “retarded”. ja i am blind to how the society works and i might have sensory problems- but i work on myself. something that neurotypical dont do. there should be an article with the headline: “why do neurotypicals fail in being smart?” because i rarely see highly intelligent neurotypicals whereas most of those who have aspergers (-wether its at the beginning of autism spectrum or the end- i give a damn-actually-) are clever and have deep thoughts. its not fair to be categorized- because i dont categorize neurotypicals either. they are the bunch of people who discriminate me and make the author of this article want to be anonymous which is a shame.

  • aspieryan

    nice article..ty for posting..i was dx ed on the autism spectrum at age 35 and i have had a long hard time accepting it myself. but it does explain why i was bullied and had zero friends over many years i have lived

    @ river tam: he is autistic. what you say is highly untrue. and to say he would have known before college is quite presumptous. your words have meaning as well river tam..and from my prespective..they have no meaning.

    • aspieryan

      @ desert vox: i agree with what you say..the word “retarded” in this context shouldn’t have been used by him.

    • River_Tam

      @aspieryan – Asperger’s is not autism – they are on a spectrum called the “Autism Spectrum”, but Autism proper is one end of the spectrum.

      • TobacXela

        The question of whether Asperger’s is actually a form of autism is hotly debated in the scientific community. You’ll find highly qualified people who say that Aspeger’s is a high-functioning form of autism and you’ll also find people who say it’s distinct from autism.

        Believe it or not, you don’t always know all the answers.

        • River_Tam

          > Believe it or not, you don’t always know all the answers.

          Oh I do believe that. Which is why I believe in God.

      • yalengineer

        I’m with River Tam on this. I’m also of the understanding that Autism is considered distinct from Asperger’s when diagnosed for Pervasive Development Disorders. As it is hotly discussed in the medical and scientific fields, I can fully understand the argument. However in the context of this discussion, why not?

  • DesertVox

    Dear Anonymous:
    Your argument in support of eliminating stereotypes against individuals with autism cannot come at the expense of stereotyping individuals with intellectual disabilities. You do not refer to individuals with “cognitive impairments ” or “intellectual disabilities” as “retarded”. Anyone advocating for justice and dignity should be aware of the long fought naming battles waged by the disability community. Please make sure that in the process of defending your rightful cause you do not end up doing to others the very same thing you are denouncing.

  • River_Tam

    “Mentally retarded” (“MR”) is a medical term.

    • DesertVox

      Thanks for your insightful comment.
      1) While “Mentally retarded” is a medical term “retarded” is not. There are semantic discrepancies between the two.
      2) “MR” might be a medical term but that does not make it appropriate. The same goes with “mongoloid”, “feebleminded”, “moron”, and “idiot”. All of them are demeaning and negative. (What would you do, if someone calls you by any of this “medical terms”?) These “terms” carry far greater societal implications than “diabetic”, “asthmatic” or “hypertensive”. I encourage you to analyze the history behind the names “given” to individual with intellectual disabilities. You will discover that all of these terms are based on eugenist approaches to human life. (Read the article by John Landon Down “Observations on the Ethnic Classification of Idiots”)
      Therefore, “MR” might be a “medical term”, but it ceases to be so when someone uses it to refer to you. If you do not want the term to be applied to you, why should I want it for my loved ones?

      • River_Tam

        People keep moving the chains on what should be considered an “acceptable” medical term when they acquire a stigma from school-yard taunts. At some point we need to accept that medical terms will continuously be reappropriated as insults. I’ve given up on mongoloid, feebleminded, moron, and idiot, since those were reappropriated long ago, but we need to put our foot down somewhere.

        • yalengineer

          If people are free to move the chain on medical terms, why not “autistic” and “Asperger’s”?

        • shuka

          i need a “Medical term” for neurotypicals. its hard to understand why they dont MEAN what they SAY and dont SAY what they mean. i have problems understanding people because of that. i never say anything which i dont mean. which is the reason why people think conversation with me is strange. now i think those who are not able to MEAN what they say and say what they mean are those who are mentally retarded. they waste time by being what they are not and confusing the listener with their language. its somehow how wittgenstein described it. its true magic that people understand each other in every day language. by the way wittgenstein was probably “mentally retarded” as well. but i prefer wittgensteins “Mentally retarded” attitute to heidegger. even though aspergers is being described since 1944 – its not new- its a neurologic issue that is genetic. so my grandfathers grandfather etc. etc etc. so i wonder how many scientists or important thinkers whose works neurotypicals use as quotes in order to show how smart they are – were “mentally retarded” too. and hey: i give a damn if its a medical term. change the medical term. if we used today the medical terms of 100 years ago-….. well…. then…..! so i guess we have to change even medical terms, don’t we? i am not mentally retarded. but i think some people are emotionally retarded to not be able to understand that it is discriminating to categorize people whose neurological capacity are different.

          • penny_lane

            Unless Wittgenstein managed to become an important philosopher with an IQ below 70, he was not mentally retarded.

  • ellebo13

    My son is 22 years old and has Asperger’s. River_Tam- this is still considered to be autistic and on autism spectrum according to the DSM-IV…although there is some conflicting opinions about that.
    He is also a Brown U grad, currently attending grad school at UPenn, and will tell you that he feels thathis autistic “passions” and “special interests” far out weigh his disabilities. He has developed many coping skills thru support from family, friends, and schools and is proud of his diagnosis! And we are very proud of him!

  • The Anti-Yale

    I am encouraged to hear of your son’s success, and proud of my own father’s success, even though he was difficult to live with.

    • TobacXela

      So close to making a comment that wasn’t about you. So close.

  • The Anti-Yale

    Your remark is actually amusing, perhaps even witty.

    Calvin Coolidge, America’s Asbergian Adminisitrator, was so taciturn that he was nicknamed “Silent Cal.” When news of his demise was announced to the assembled literati at the Algonquin Hotel lobby’s “Round Table” by a breathless messenger declaring “President Coolidge is dead”, Dorothy Parker looked up and replied, “How could you tell?”

    There. Did it.

  • penny_lane

    You’re taking a very narrow view on a complex subject. It’s very sad when ASD folks are discriminated against or bullied due to their differences, and I applaud people who succeed either because of or despite what you call “neurodiversity.”

    However, you’re ignoring the very high rates of depression amongst individuals with high-functioning autism or Asperger’s. Logic and research both suggest that, as you say, it’s because autistic individuals very much desire positive social interactions but are largely unable to achieve them. These rates of depression are directly attributable to the deficits that the ASD diagnosis comprises. So while having a special interest may be of professional or academic value, if you have no friends because all you ever want to talk about is trains, the blessing is mixed at best.

    You’re also ignoring the struggles of those who are lower-functioning, who have low IQ’s or even qualify for the MR diagnosis. We have no real way of measuring whether they are depressed or not apart from a few behavioral clues (appetite and sleep), which paints a very narrow picture of the level of comorbid depression on that end of the spectrum. Moreover, these folks require a large degree of special training and hard work to function in the world at all.

    In the end, I think any attempt to lessen stigma against autistic individuals by trying to portray it as something other than a disorder is misguided. Achieving that goal will deny people the help and treatment they really do need.

  • Mellow

    In contrast to the “manual’ the practical matter is that high functioning Autistics and those with Asperger look almost nothing like classic Autism. It is like calling eveyone at any grade level a student with some being in kindergarten and others doing their doctorates. The autism that leaves one dependant on others is what needs to fit under this label. I don’t doubt the author has an unusal condition but why label it or make a distinction if you want it to be seen as “neurodiversity”. Neurodiversity is like saying I am human, and we are all different and sounds a lot like a religous or philosophical ascription.. The Autism I know would never allow the person to read or write this article or blog and they would not understand any of the issues if told them. I find this take on Autism actually dilutes the proper attention and diminishes the needed attitude about the serious deficits of Autism as a condition that prevents one from being functional in the world.

    “Only then can we give autistic children the opportunity to grow up as independent, productive and respected members of society.” Those with classic Autism often cannot make use of this “opportunity” and your assertions pervert this fact.The world cannot not be a certain way just because you wish it to be so. I think that if the only examples of “Autism” to ever exist were people with your condition there would never have been a condition diagnosed and called Autism. If the people who make make these dignostic labels want to help they should make a greater distinction in the parts of the”spectrum”. This spectrum is hardly connected at places.

    • anotherperson

      I would respectfully disagree. If a person had a disability at varying degrees, that person still has a disability. For instance; one person who is hearing impaired can hear with the help of a hearing aid, another cannot. Is the first person not still considered “deaf”? Of course they are. Should we make an entirely different diagnosis for them so that the deaf who cannot be helped with hearing aids are not “diluted the proper attention”? As the parent of a person with high functioning autism, I can tell you that it is most definitely autism. Some days more so than others.

  • The Anti-Yale

    Why wasn’t Calvin Coolidge’s silence or my father’s silence considered a disablity? Because society had not yet valorized social skills in men as a desirable attribute in the 1920′s and 30′s. In fact, silence was considered a strength in men, if not sexually alluring. Ever hear of the “strong, silent type”?

    It is only with our obsession to standardize, quantify, and analyze all human behavior that we feel the compulsion to label variations from the standard as “disability”

    And think of the suffering this adds not only to those who vary, but to the parents of those who vary.

    Paul Keane

  • townieexprof

    Very brave and important article. Thanks for “coming out” to all of us and telling us what you know and have discovered. Your writing is very good, not unexpected for a Yalie of course, but perhaps this holds clues as to your future. You can be an important voice for the neuro-not-so-typicals.

    In the meantime, as someone who has worked in the field professionally for over two decades, (I would have wished for a more humane and personal response on Yale chat boards but whatevs)
    Aspergers’s is a form of autism. Not a milder form. Not a kinder gentler form. Its just a form. And yes, “Asperger’s” the term is being removed from DSM-V not because it doesnt exist or isnt real, or isnt really an autistic disorder, but because it it sooooo much like high functioning autism, that the science cant distinguish the two anymore. So for those of us who DO think Asperger’s is useful concept, we will continue to use it. Study it. Treat the person with it.

    But the main point is in helping children, teens and adults (and our sociaety at large) with this puzzling and complicated condition better understand themselves, their gifts, their challenges and continue to make the important contributions Aspergerians have in the past and will in the future.
    Good luck!

  • YaleTemp

    I agree with townieexprof – your writing is excellent and you really could have a very special place in the world as a voice for Aspies who are not so gifted at writing. I also applaud your ability to achieve an ivy-league education despite such a life-altering disability. My own 19-year stepson, who has Asperger’s, is struggling mightily to even pass a single, remedial college class on writing. I’m intrigued by the idea that there could be compensating benefits to having Asperger’s. What are these benefits? For example, what is the benefit of having an (obsessively) focused interest in something that’s not job-related? It just alienates people who aren’t interested in the topic and can even test the patience of those who are extremely interested. Lack of social skills is a deadly failing in almost any career, and its no small matter to avoid social potholes that you can’t see or predict.