Home > In Their Own Words > In Their Own Words – In Opposition to DSM-V

In Their Own Words – In Opposition to DSM-V

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 editors@autismspeaks.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.

  1. eric
    September 4, 2010 at 9:51 am

    Not really sure if I understand the intent of this. To me it carries a tone too much like “don’t call us autistic, we’re better than them”. As opposed to “we are different and should be considered as such”.

    • Suzy calvin rees
      September 4, 2010 at 11:32 am

      Totally agree!

      • Kelli
        September 4, 2010 at 5:28 pm

        Agreed as well!!! With 4 on the spectrum, and the oldest an Aspie…well, sorry…to me they are all very much alike. They are all traveling on the same road, but are moving in different directions. None better than the other, just different strengths and weaknesses and in varying degrees, therefore seeming to ME all Autistic!!!!

      • Tracy
        September 4, 2010 at 6:20 pm

        I agree too! My son has autism and I’m sure people don’t assume he needs to be institutionalized. High functioning autism is way closer to aspergers than this person appears to think.

    • Nicole (Autism Mom)
      September 4, 2010 at 6:34 pm

      Agreed! I gave a lengthy comment/critique down below. It’s comment 26.

    • Lisa
      September 5, 2010 at 11:28 am

      I too totally agree!

    • kyle
      September 5, 2010 at 9:05 pm

      I completely agree.

    • Grapes
      September 12, 2010 at 7:19 pm

      I also agree, and I have Asperger Syndrome myself. Furthermore, this reads as though Fjeldsted looks down upon people whom she deems as lower than herself. No human can truly judge the potential of another. I understand what the point of this essay was in the sense that the world does not need to know of my diagnosis because stereotypes are indeed prevalent — but the way this was written only made Fjeldsted appear as uppity.

  2. danielle mancinas
    September 4, 2010 at 11:17 am

    wow you have so much anger how can you attack the autistic people they are not that much different from you the next time you want to make a point use facts that is more convincing for you to say that autistic people are not high functioning is false they are not always in institutions sometimes you will not get hired at jobs for your attitude or the way you portray yourself and to me you are very judgmental people with autism are very bright are high functional as well the reason why the want to call aspergers high function autism is because they are more similar than what you think you know all the issues that an aspie has are all the same issues an autistic read up on your information you are already part of the autistic community weather you like it or not accept yourself and stop being so angry and if you want to get you point across use facts not what you believe because you are doing on to others as they have done to you and you don’t like it so don’t put down others to make yourself better and for your info autistic children are not the same they are all different with their unique set of challenges

  3. Suzy calvin rees
    September 4, 2010 at 11:31 am

    I have to agree with the other comment that this article comes across with a tone of Aspergers sufferers are more intelligent and this person doesnt want to be labelled Autistic because autistic people are less able and more stupid. Honestly i actually feel offended by this article as my son is autistic. He is diagnosed with ASD but as he is very bright and able some people are suggesting we change his ‘label’ to high functioning autism or aspergers. Although i agree with the points made about keeping diagnoses and labels seperate for reasons of clarrification. I dont agree with the overall tone of we are better than them and dont want to be called a name which associates us with them. I think this person will find that people already say high functioning autism/ aspergers- same difference. People with autism are as widely affected in their abilities as people with aspergers.

  4. Kelli Dahlem
    September 4, 2010 at 11:37 am

    As the parent of an autistic child I am extremely offended by this…my son is “intelligent” and “capable!” Unless you have forgotten autism is a SPECTRUM disorder. Not all autistic persons are unable to speak and function in society. You are doing exactly what you are accusing the general public of.

    • Barbara Masie
      September 5, 2010 at 2:24 pm

      I absolutely agree with you. As the parent of a very intelligent autistic son, I too am offended by this.

      • Lesa
        September 6, 2010 at 11:33 am

        I agree, my son has pdd but he also has an intellectual disability. You are so right that there are varying degrees of the spectrum. Does the writer feel that maybe pdd should not be a part of the spectrum either? Should I be offended that my son is on the spectrum? AND according to the Autism Society of Canada, aspergers is on the spectrum…

  5. Shawntae
    September 4, 2010 at 11:55 am

    @ Eric, I really don’t get that impression. I have 4 children one is “High Functioning Autistic” and the oldest just got a diagnosis of “Aspergers Syndrome”. Trust me when I say it, The “HF Autistic” and the “Aspie” are 2 different unique situations. The Autistic child didn’t speak until 5yo’s her speech is robot and repetitive, but she is a happy social butterfly that makes friends whether they want to at first or not. My son, the Aspie, learned to talk at 8mths and read by 18mths; has an extraordinary vocabulary and comprehension skills, but is depressed and has anxiety issues because he feels different from other kids and that people don’t understand him. He would be highly offended if he was called a HFA, because he knows the difference in him and his sister. He doesn’t feel that he is better, just that he is different. It’s like stereotyping all of one race by their worst case scenarios.

  6. Elgjna
    September 4, 2010 at 12:11 pm

    My son has autism . He has pdd. His iq is of average intelligence and he is very smart. There is stigma with all mental health issues. I don’t like it comments about people think that autistics should be institutionalize or can’t take care of themselves

  7. cs
    September 4, 2010 at 12:18 pm

    I agree with Eric.
    The summary of this could be written as:

    WAAAAA By calling myself an Aspie I get to be associated with brilliant people! I don’t want to be associated with people with a negative stigma…. WAAAAA

    Hannah, you mention that people dont give jobs to people with Autisim, yet not everyone goes around as you seem to do, telling people there DX. If you are an intelligent person and present well, then you stand a good chance of competing against other job hunters.

    And regarding your argument about ambiguity in diagnosis, how would you classify my son who has a high IQ, but has some speech issues? He has received both Asbergers and High Functioning Autisim DX’s…. There is clearly some overlap between the disabilities. It is not as “black and white” as you make it sound.

    Asbergers does not define who you are, it defines a disability you have. You have to define yourself, by your actions and accomplishments.

    • September 27, 2010 at 2:01 pm

      One note. Under the ADA you are not required to disclose your disability at an interview or even after being hired. If someone uses a job coach, the job coach won’t disclose anything but the accomodations requested. Full disclosure is not needed to gain accomodations.

  8. Elizabeth Bachelder
    September 4, 2010 at 12:18 pm

    I agree with the above comment. Now I understand the hostility in my own family. I have a 36-year old son with autism, and a cousin who is an Aspie. Great pains have been taken by the folks in the “Aspie” camp to differentiate themselves from those of us in the “autism” camp. And yet, if it hadn’t been for the inclusion of both these groups, we never would have seen the progress of the last 10 years in autism research. I say band together for the most benefit. While it is great to boost your feelings of self-worth by calling yourself special, that’s not how the real world operates.

  9. Natalie
    September 4, 2010 at 12:25 pm

    Eric, it’s not a matter of being better than anyone. At least partially, it’s a matter of not wanting her capabilities discredited. It’s also a bit of an identity crisis. For years now, Aspies have been told that they have a “disability”; however that disability, difficult as it may be to deal with sometimes, comes with exceptional gifts. It’s not right to take the acknowledgement of those gifts away by changing the title of the disorder. Sometimes those gifts are all that makes it bearable.

    • Nicole (Autism Mom)
      September 4, 2010 at 6:45 pm

      Even a nonverbal person with Autism has gifts. It was unnecessary for the author of this piece to imply that only Aspies are gifted. Someone cannot build themselves up by tearing others down, because it only makes that person look small. I hope the author takes a different tact in the future.

  10. Mariam
    September 4, 2010 at 12:32 pm

    I do not know whether Aspergers Syndrome should be classified separately from Autism or considered part of the Autism spectrum, but this writer clearly misunderstands and harshly stereotypes those who have an Autism diagnosis. My son has autism, and he is neither “incapable” nor “unprofitable”, as she implies people with Autism are, and has many of the same talents the author prides herself on, in spite of his communication and interaction difficulties.

  11. Ken
    September 4, 2010 at 12:34 pm

    “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.”

    This is tremendously ignorant and offensive. Defend your condition but throw anyone else under bus?!?! I agree with Eric’s remarks and would add that neither Asperger’s nor autism is really about intelligence and many autistic people do not need to be institutionalized and can live independently.

    • Lesa
      September 6, 2010 at 11:45 am

      You are so right. A diagnosis of autism spectrum does not imply an IQ or ability and should not be seen as such. I don’t find that thats the stigma in Canada. My son is diagnosed with PDD but I find I have to clarify with people that he also is diagnosed with an intellectual disability. I find that most people aren’t stereotypical about his Autism Spectrum Disorder and am sorry that the writer feels that most people do…

  12. Dawn
    September 4, 2010 at 12:36 pm

    As the parent of a child with aspergers and one classified as high functioning autism I can say that getting services for the high functioning autism dx is FAR easier than aspergers. Aspergers doesnt carry the level of implied disability that autism does. From a parents viewpoint I do welcome the reclassification as it might finally force the schools to provide the services I have been demanding for years only to be told “he doesnt qualify” because they fail to understand the implications of aspergers but they fully understand high functioning autism.

  13. Yikes
    September 4, 2010 at 1:04 pm

    Wow. This seems to me a case of ‘Choose your battles’. All due respect, you’re obviously articulate, but after 45 years as an Asperger’s traited human, I’m cool with knowing that there are others with perspectives like mine.

  14. TGC
    September 4, 2010 at 1:05 pm

    I agree eric. I got an uncomfortable feeling reading this-can’t quite put my finger on what but it just did not sit right with me (a mother of a child with autism)

  15. Avery Ecklein
    September 4, 2010 at 1:39 pm

    I am far-left Aspie! I feel depressed by misdiagonsed of autism! I have something severely autistics does not have! I want Asperger’s to be diagonsed seperalty!

    • Nicole (Autism Mom)
      September 4, 2010 at 6:49 pm

      Avery, Just please remember that those with Autism, including those who are nonverbal, have gifts too. Peace be with you.

    • natasha
      September 5, 2010 at 10:18 am

      you sound and write just like an Autistic person to me. it is a spectrum for a reason, but it is NOT a spectrum of who is better than who.

      • Washi
        September 5, 2010 at 8:08 pm

        I believe this is sarcasm. He’s mimicking the article’s author.

      • Grapes
        September 12, 2010 at 7:22 pm

        I agree with Washi.

  16. bonita chavez
    September 4, 2010 at 1:41 pm

    I was watching a special on autism that showed that Indian professor pointed out that even people who have severe symptoms of autism and don’t speak tend to have normal to above normal intelligence. I was diagnosed with sensory integration problems which effect remembering and intregrating auditory stimulous not aspergers or autism and I have been misdiagnosed.

    I actually quit talking after the death of my grandmother at age 5. My age 8 I had to have extensive speech and other special education. I had AD/HD and dyslexia. I was in gifted classes only because my grandmother saw a school teacher and taught me to read and write. I was diagnosed as being 3X normal on visual processing and delayed verbally and intregrating auditory information with some hearing loss that is age and noise related.

    If the person has visual sensory intregration problems then you see much more of what people think of as autism behaviors. You will notice behaviors simular to those that are blind except their is nothing wrong with the eyes themselves but more something different with being able to process visual information. They may actually have the same intelligence as someone on the other side of the spectrum.

    I remember this one artist that they considered to be intellectually disabled except they used the r word. An art therapist gave this individual some clay and they started making these beautiful sculptures of animals. Now this person is a famous artist. Doesn’t interact or talk very much with other humans but can afford a ranch with animals and support staff with their art. They called him a idiot savant (that is as bad as the r word)after finding a special gift. All of us have challenges and gifts as human beings.

    A colonization noun based English language makes everything into things and puts them into categories and labels.Most IQ tests are geared towards verbal processors. It puts things in a continuum of higher and lower. (I would rather be taking art classes than the statistics I am taking this semester.) In Indiginous verb based language every thing including things are in the process of becoming or becoming something else. Mental Illness and labeling differences are not part of these cultures. Everything is a circle with everyones viewpoint making up the truth. All things and creatures being being equal and related rather than better or worse or higher or lower or even on a continuum.

    We need the DSM for billing and funding but on many levels I don’t agree with medical models focus on illness or dis-ease.I like wellness and healing and recovery or coping models. Stigma and poverty are way worse barriers than all my learning and physical differences. Everyone is on the continuum or in a circle around the fire on what it means to be a human being. Normal is a statisical illusion.

    I find sensory deprivation soothing when I am overstimulated & I like bondage, being wrapped in blankets, or being in a float tank, swimming, driving etc not so much spinning. I never moved my hands around or have a tick etc that I am told by Dr. level educators we all have. My point is we are all different in some ways and always have simularities.What we are really fighting is misconceptions and stereo types that lead to stigma.

    I think it was Aug 15th that the word retarded was removed legally. I got in trouble for bringing up this issue with my rehabilitation classes that even though the DSM uses the word retardation for all in the autism spectrum that this is not a accurate assessment. In fact I told them I have intellectual and neurological differences but that does not mean that I am retarded. I am in graduate school and usually a honor student when given the proper accomodations. Another student with autism was having the same problems I was in hiigher academia. She got a lawyer and sued and was thrown out of her graduate program. I am 16 credits to finishing. I am invested in working these issues out.

    Disability Services would not make accomodations until I varify the new diagnoses of Aspergers. I score high on the self tests and every one who knows someone with it say I exhibit that diagnoses. I was also told I was not worth the expensive testing to varify it. I was denied accomodations because I couldn’t get anyone to varify it.

    I am more for changing the stigma around so called intellectual disabilities. I score below average on IQ test that are verballly based. I test genious on visual tests and three demensional things. I am studying to be an art therapist. Stormy

    • danielle mancinas
      September 4, 2010 at 8:30 pm

      good 4 u

    • September 27, 2010 at 2:19 pm

      “Normal is a statisical illusion.” Love it!

      Just a note on DSM – mental retardation diagnosis is separate but sometimes co-occuring and is not base solely on IQ. There must be limitations with ADLS (activities of daily living) such as learning, driving, dressing, managing ones own health). You are 100% right about IQ not being accurate with autism as all because it’s langugae based normed. When I get a client with autism or aspergers for job coaching… I don’t look at the IQ at all. It qualified them for services and that is it. Not useful beyond that. I’m more interested with how does this person learn best (I’ll be training them in their job tasks). How do they handle stress or change or instructions from supervisors? How do they handle certain environments (ie. sensory or even groups vs individuals or day shift vs nigh shift)?

      I love art therapy. I worked closely with some therapists in a previous job. Wonderful field. Good Luck!

  17. Jennifer
    September 4, 2010 at 1:49 pm

    I think it’s brilliant! It’s very well written and I’m glad that someone has such a strong view on Asperger’s! Sooo many people think that Asperger’s IS “high-functioning”. Try living with it!! My son has it and it’s VERY difficult to live with. It may not be “full-on” autism, but it’ still a syndrome all its own.

  18. Beth
    September 4, 2010 at 1:50 pm

    I find this insulting. Saying that it would be a mockery to be grouped with the general autistic population is a terrible thing to say. To me it seems you are looking down your nose at the spectrum diagnosis. Aspergers is not elitist, and there are many, many brilliant and wonderful people on the spectrum- would you say this to Temple Grandin? Probably not, and she is not an “Aspie”.

    • Grapes
      September 12, 2010 at 7:23 pm

      Seconded.

  19. debbie crosby
    September 4, 2010 at 1:51 pm

    I come at this from two perspectives, the mother of a child diagnosed with PDD-NOS,and an educational advocate who helps parents navigate the Special Education maze. from both perspectives, I have to say that I’m more intended to include Aspergers under the AU diagnosis than not, although I think it SHOULD definitely be identified individually from JUST autism.

    First let me say, that while my 12 year old son displays no Aspergers traits, he is highly intelligent, so I think it is important NOT to let the diagnosis define anyone, in that arena, especially. I think even funtion levels can be dangerous, as the nature of spectral conditions is just that, spectral. My son may speak primarily through echolalia, if left to his own devices, but he can express himself artistically better than most adults. If you limit his ability to contribute strictly on whether or not he can communicate verbally, you will miss a true blessing. The people the writer refers to who will limit him and other Aspy’s need to be enlightenend into the nature of all spectral diagnosis. Idare say the author could also use some enlightenment, as he appears to discriminate non-Apsy’s much the same way people discriminate against him.

    There is currently no recognition in Special Education for just ans Aspergers Syndrome diagnosis. As it stands, trying to get school districts to recognize the diagnosis of Aspergers is nearly impossible. If a parent does not seek private evaluations, they will most likely never see a diagnosis of Aspergers through a school district. If the current diagnosis code for Aspergers changes to something completely unrelated to Autism, you eill never see children who truly have Aspergers and need services, served appropriately again. They will be labeled at best, Emotionally Disturbed. If you think Autism is a diagnosis that comes with a curse, ask people who have had Emotionally Disturbed attahced to their name what their childhood was like. I’d bet money their answer would be “HELL!”.
    Just like any other categorization, bigotry against one group over another should not be acceptable. If it is agreed that Aspergers IS part of the Autism spectrum, then leave it under the current DSM-V categorization, and clarify further for those few case that need more specific qualifiers. But don’t sacrifice an entire population of children that require appropriate identification through the DSM-V to become educated.

  20. Jessica Oliver
    September 4, 2010 at 1:59 pm

    As the parent of an autistic child, I am incredibly offended that Autism Speaks would give such a wildly offensive post such a large audience. The above consists of a dozen different ways to say the same thing, which is: it isn’t fair to lump people with Asperger’s syndrome in with those on the spectrum because everyone thinks people with autism are stupid and incapable of being productive, but people with Asperger’s are really talented and smart. You have got to be kidding me. It is beyond disheartening to contemplate my child having to negotiate a world where even people with their own autism diagnosis perpetuate ignorant stereotypes about him. I am disgusted.

    • Jill
      October 3, 2010 at 11:21 pm

      As the parent of an Aspie, I am offended that you do not understand that there is a difference between the two. It does not mean that my son is better, it just means that he is different than an autistic child. If you ask me, you are the one that is ashamed. Get over it.

  21. Bob
    September 4, 2010 at 2:03 pm

    Interesting perspective! I feel as you do on this. Thank you for sharing your very intuitive and hard earned thoughts!

  22. Cheryl
    September 4, 2010 at 2:06 pm

    Hannah:
    While I do understand what you are saying and can easily agree with parts of your argument; in the end I have to disagree with your analysis. My son has an autism diagnosis due to the fact he has speech issues. However, he can memorize 200 page books, gets 100% in subjects like statistics and probabilities, and is an amazing artist that sees things most people never will. Should he not benefit with a label that encompasses all kinds of people on the spectrum which in turn will allow people to understand that people on the spectrum are all unique individuals with all types of gifts? And to turn your argument around why should he be forced into a group that is perceived as “more negative” (your words) when he possess those traits you listed as belonging to Aspies too? The only component holding him back is his speech…his rate of speech.

    In regards to your statement:

    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.

    As a parents with two children with diagnosis of autism, Tourette’s Syndrome, seizures, CAPD, sensory integration disorder, etc. it seems to me that most people whose children have been diagnosed all follow a pretty predictable sequence of interventions no matter where they are on the spectrum. It just takes time to figure the “extras” like CAPD but in the meantime most people on the spectrum can benefit from behavorial analysis, ABA therapy,etc.

    Another reason for wanting a universal Autism Spectrum is it will allow more people to obtain services. For instance in California one of my sons was denied services by the Regional Center When they daignosed him Asperger Syndrome. According to Regional Center mandate they must provide services to those with an Autism Spectrum diagnosis but do not have to provide services to individuals with an Asperger Syndrome diagnosis. Due to this my son was denied early intervention services that he would have benefitted from for the rest of his life. Instead, we had to waste precious time (about 2 years) taking the agency to court ourselves before finally winning our case and getting the CVRC diagnosis changed. That is two years wasted in my son’s life where he should have gotten intensive services. We can’t get those two years back and will never know if they would have made a difference in his quality of life. So at least in the state of California eliminating the Asperger’s category will allow many more people to benefit from services currently offered to those with Autism diagnosis. Services such as ABA therapy, social skills groups, ABA programs that are implemented in the schools by the ABA providers, group homes, etc. Most families could not afford to pay out of pocket for the services provided free of charge via the state so this change would be welcome to many with an Asperger’s Diagnosis.

  23. Julie
    September 4, 2010 at 2:36 pm

    Hannah presents many emotionally compelling reasons why she does not believe Asperger’s disorder should be grouped into the autism spectrum and although I respect her opinion and can see her point, I have to disagree with her. Decisions about classification of disorders in the diagnostic classification system (DSM) should and can not be influenced by personal feelings or opinions. Rather, the DSM has to based on scientific evidence for how symptoms and syndromes fall together in nature. Research shows that symptoms of autism, Asperger’s and PDD-NOS fall along a continuum graded by severity, not by any categorical distinction in a domain of functioning. If we continue to classify autistic disorder, Asperger’s disorder, and PDD-NOS as discrete disorders this will impede research into understanding the biological, neurological, and genetic basis of these disorders, which most likely share common etiologies.

    • September 27, 2010 at 2:44 pm

      I hadn’t thought about the research needs. But this will also inflate the statistics and the media and general population will most like buy into the epidemic theory.

      PDD-NOS is not a disorder by it self. It is used with children who are undergoing screening for autism/asperger and other developmentl disabilities and is often changed to something more specific later. I’ve seen it used on adult psychologicals and it should NOT be. That is laziness on the part of the psychologist in obtaining the documentaion needed or the family is poor historians. Anything with NOS after it implies ongoing screening or the symptoms are extremely atypical and that just doesn’t happen as often. It’s notmally the former.

      • Debbie Crosby
        April 18, 2011 at 2:45 pm

        PDD-NOS most certainly IS a disorder, by itself and it does have it’s own specific criteria, including atypical Autism, where the onset is after age three, the sympyomology is atypical or subthreshold, or all three. Not all family are poor historians; sometimes it is what it is. As a parent that has tried repeatedly to get a more specific diagnosis, I have been repeatedly told byu multiple practioners that PDD-NOS is the most accurate categorization for my son. Please don’t make absolute statements about others when you have absolutely NO personal information with which to do so. Your misinformation only serves to perpetuate the tangled web of misinformation, already pervading the internet.

  24. Claire L
    September 4, 2010 at 2:50 pm

    It has nothing to do with being better or worse…it has to do with being different with different struggles and issues.

    Unfortunately, what has happened with our society via the school system/medical community is that we’ve lumped all “Special needs” into the same classroom and the same catagory. This limits our children, severely.

    I love ( my best friend’s children) and work with ( my classroom children, though, I love them too) both Autsim and Aspergers kids and find that what is needed from me to be vastly different with each child, each set of “issues”.

    Miss Fjeldsted is simply stating the struggles she’s faced in being “labeled” into a vast group of people that are NOT the same. Not only are children with Aspergers not the same as children with Autism. Children with Autism are not the same as other children with Autism…. As she’s stated, childen with Aspergers are not the same as other children with Aspergers. Narrowing our labels down to more specific terms would help us narrow our teaching methods. I don’t like labels, but, as an educator I use them in order to change my teaching methods from one child to the next.

    I, personally, have found some major differences in my kids… in both how they react and how I need to handle situations. I think it’s a fair request to ask for more individualized terms and conditions. I think it also adds a fairness to children with Autism that they do not have right now…. the less time I search for “what area of the spectrum” my children are on… the more time I can focus on their needs.

    I think that in lumping all of our Autistic/Aspergers children into one catagory is much like lumping all mainstream children into the same standards based education….it doesn’t work, never will, and will only limit the vast potential that all groups of these children have.

  25. D.
    September 4, 2010 at 5:28 pm

    eric :
    Not really sure if I understand the intent of this. To me it carries a tone too much like “don’t call us autistic, we’re better than them”. As opposed to “we are different and should be considered as such”.

    You say, “But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently.” Are you kidding? As a father of an autistic child I find this comment highly offensive.

    • Sam
      September 24, 2010 at 1:28 am

      D.,
      Eric’s comment was quoting Hannah’s.

  26. Christine
    September 4, 2010 at 5:38 pm

    i think the content is absolutely true. however, i would go as to edit the info a bit. im an aspie myself: i believe aspergers should be a spectrum inside the autistic spectrum. it still provides the separate labels. my childhood neurologist explained to me that aspergers is definitely an autism spectrum disorder. and yes, the tone of this essay should definitely be changed. being on a spectrum means we are all different. it does not mean we are affected the same way, as the author implied.

  27. Nicole (Autism Mom)
    September 4, 2010 at 6:08 pm

    I agree with the author of the article that Asperger’s should remain a separate DSM category. Additionally, the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe Autism have. As it is, there are times that I am compelled to explain that my daughter has Autism; not Asperger’s… thus she needs more assistance/accommodations. It’s the “Rain Man” fall out still. People, who are not involved with Autism, assume that they know what Autism is all about because of that movie…. “Rain Man” was even required viewing in a college level course on special needs education. Yes, I’m serious! Yet, if the character in the movie was given an ADOS test, he’d probably test as high functioning or even Asperger’s; not representative of even moderate Autism. He likely had an Auditory Processing Disorder, he had some social impairment, as well as rigidity in his routine, however he was also very verbal and learned quickly how to do things when people took a little time to teach him.

    All that said, I was rather uncomfortable about the tone of the article, because it seemed to put down those with Autism. I understand that it is written by someone with Asperger’s, but it seemed to go negative on those with Autism (like “should be institutionalized”)…I know the author was talking about stereotypes, but I don’t think it was vital to the message of the article to perpetuate Dark Aged thinking about Autism. Additionally, even nonverbal kids have their gifts; it’s not only Aspies who are gifted. Don’t get me wrong, I applaud the author for composing a very well thought out article and for bringing some of the problems with changing the DSM to light…it is just that I’m the mother of a child with Autism and am very conscious of how Autism is portrayed.

    I’ll conclude with my radical thought of the day…current or proposed new DSM categories aren’t very useful. It’s all based on behavior; not the reason for the behavior. Get 10 kids exhibiting the same behavior, then look for the cause of that behavior with each child, and you will likely find multiple {possibly 10} different causes for the same behavior. Autism has become a convenient catch-all for some physicians to basically say “Your kid has Autism. Go do some ABA. Next.” [FYI, for those who haven't been informed, ABA is not the only teaching modality for Autism... there's Son-Rise, Floortime, HANDLE, RDI, etc.] How about we start treating individuals with Autism and with Asperger’s as individuals?…dig deeper to find the reason/cause for that individual’s behavior. I recall a story that I heard a few years ago of a little girl who kept flitting her fingers at the sides of her eyes. Her parents were told to extinguish this behavior, so they kept telling her, “Quiet hands…quiet hands.” As life went on, they eventually had cause to take her to an eye doctor. She had a problem with her eyes, and that flitting of fingers at the corner of her eyes actually stimulated the part of the eye that was impaired, thus making it so that she could see better. No cookie-cutter DSM categorization was of use to that little girl. It must be remembered that our children are individuals.

  28. mandy
    September 4, 2010 at 6:33 pm

    i find this article rather offensive to those on the autism spectrum. The spectrum is very large for a reason, above average intelligence to below. However, autism itself is a “social disorder”, which is also a problem for those with Aspergers. Being diagnosed with autism is nothing negative. Everyone whether autistic or not has “quirks”, no 2 people are the same regardless. Sounds to me the person who wrote this is the 1 with the negative attitude towards autism and would find it shameful to share the spectrum! Children all learn at different paces and autistic or not have to be looked at individually. Your article comes across as arrogant and negative to those with autism, most with autism do not have severe learning disabilities just learn using different approaches. But if autism by definition is a social impairment that would definately include Aspies whether you want to accept or not, and that is not negative!

    • September 27, 2010 at 2:57 pm

      autism and aspergers are developmental disabilities. social is only one part of the criteria.

  29. mandy
    September 4, 2010 at 6:39 pm

    I also am disgusted that autism speaks would post this article, and offend so many with autism spectrum disorder.

  30. September 4, 2010 at 6:45 pm

    total agree with you Hanna,I live in the UK and the lack of understanding is crazy,I have a family member who is 26yr old genius with aspergers,and life is so hard and people make it even more difficult.hes at home 24/7 and cos of what he has been thru does not trust anyone,no one nos what its really like unless they live with someone wiv aspergers,everyday is a struggle,tho he looks totaly normal and drives, there is nothing mild adout his condition,keep up the good work!!!!x

  31. September 4, 2010 at 7:12 pm

    I know what Hannah means about identity. Like her, I developed affection for the name Asperger’s after the professionals applied it to me. Of course, had they said High Functioning Autism it’s possible I would have developed affection for that too. After all, one manifestation of my neurology is to focus very closely on things and get irritated when their names are changed! Ultimately, though, I suspect it’s unwise to cling to one misleading label in fear of another. The energy is better used to reject misleading labels altogether.

  32. Jen
    September 4, 2010 at 8:45 pm

    The author appears to fear being grouped into a part of society which she touts intellectual superiority. It appears she intentionally chose hurtful and demeaning language, and that she fails to care how her words would affect the ‘typical’ reader. The overall tone of the article is perceived as harsh and arrogant. I believe this article – written by as aspie- clearly reinforces the classic autistic symptom- the social deficient. It is the hallmark symptom of autism – and which is the link between all of the variations within the disorder itself. The deficit is presented via speech, written words, and body language.

    Personally, I believe the Asperger diagnosis should be included under the ASD umbrella. The main difference between PPD-NOS (commonly referred to as ‘high functioning autism’) and Aspergers, simply comes down to the aspie’s early to typical development of speech. Notice I said SPEECH. But, the aspie – even in early development – clearly shows a deficiency with pragmatics (social language usage). The pragmatic delay is severe, and generally only a trained therapist (or parent!) will pick up on it in the early years. A pragmatic language delay is also present in the late-talker/PDD-NOS child. In fact, if this delay is not present, the PDD-NOS label is typically changed to ADHD, a learning disability, or the diagnosis is removed all together.

    Many PDD-NOS labeled people are as extremely gifted and bright as the aspie next door. But the PDD-NOS is also grouped with the autistic person of average or below intelligence, so the group ratio of intelligence is evened out. The PDD-NOS group appears less gifted as a whole next to the aspies. And really, not all aspie’s are as extremely gifted as their label predicates these days with the younger generation. It’s turning into another ‘catch-all’ label, like PDD-NOS, because many early talkers are automatically being given the aspie label. Maybe an intelligence test should be given to definitively differentiate between the aspie and other ASD people!

    Because of the labels and prejudices people behold towards all autistics, the Asperger’s label is appropriate under the ASD umbrella. The distancing of the diagnosis from the Autism umbrella will only result in the further loss of services to children receiving Early Intervention or Special Ed services, and adults. Clearly this is already the trend throughout the majority of our country.

    By the way, isn’t it the wide-held belief Einstein didn’t talk until he was around 4 years old?

  33. Suzi
    September 4, 2010 at 8:52 pm

    I don’t understand how grouping Asperger’s with autism is a problem. They are both disorders. With medicaid and medicare being what it is, what if autistics can get TCM (targeted case management) and “Aspies” cannot? Do you know that some people at social security think that if you can use a computer, they don’t see you as disabled (despite having a personality disorder)? They assume people with mental disorders have no intelligence!. My oldest daughter (who was diagnosed as autistic in 2009), loves to play musical instruments. She remembers whole lines from movies or TV shows that she likes. When she was little and it was time for her to be evaluated again (before then she was considered to have developmental problems), I told the doctor that I knew she was smart. The jerk had the nerve to tell me she wasn’t and that she had mental retardation! The stigmas are rampant everywhere. Just because an IQ is below a certain number it does not mean the person is not intelligent.

  34. Washi
    September 4, 2010 at 9:25 pm

    I possess many Asperger’s traits and am the mother of an autistic child. Different branches of the same tree. Asperger’s is just a label, it is not who you are. One more offended by this article.

  35. Dia
    September 4, 2010 at 10:54 pm

    I don’t like the tone of the comments by Hannah. I agree with Eric. You make it sound like it’s great to be an Aspie but please don’t link me to being autistic. They all have problems and all are different! My granddaughter is autistic, but her teachers say she is very bright. She’s just beginning to speak, but is getting better everyday. She’s very sociable and friendly at school. Please don’t make it sound like the Aspies are an elite group!

  36. Mary Luce
    September 5, 2010 at 10:19 am

    As a mother of an autistic son, I am angry that such bigotry and vitriol are given a forum on Autism Speaks. It is this type of attitude that further stigmatizes all autistic children. I feel like the author has kicked my son in the teeth. I wonder why the author, who wants nothing to do with the term “autism”, would want to publish this blog on an autism website. I also wonder why the author thinks it is ok to further ill-informed malicious and negative stereotypes about our children. I think the author needs to take time to learn about autism. Just because you have a disability does not give you a free pass to attack others. There are many good reasons for both sides of the diagnosis argument, but “I don’t want to be associated with them because I am so much better than them” is not one of them.

  37. September 5, 2010 at 11:54 am

    It’s becoming a game of ping pong between terms like Aspie and Autism, terms which are not illuminating – merely jam jars in a doctor’s office. Neither label impresses me anymore and I worry the catfight between them distracts people from another movement. A movement away from looking at this as a syndrome or disorder or form of autism. I would prefer people to view me as having a certain cognitive style or profile. Then again, maybe the legacy of people like Hannah will be a pruning of the word Asperger’s and the regrowing of it, all by itself, in language. Maybe Asperger’s will become an adjective.

  38. Kim
    September 5, 2010 at 1:02 pm

    I, too, was offended reading this piece. I actually had to walk away from it before I commented so I wouldn’t write from raw emotion. I couldn’t believe Autism Speaks would publish it on the blog. A place where those of us living with Autism come together to offer support, our experiences, our stories and our understanding in an empathetic format. Then I came back and scrolled down the comments. WOW. I am so proud of all the commentators that spoke up and stood up for those living with autism. I felt anger reading the original piece. But I felt pride and unity reading the majority of the comments. Thank you for once again reminding me I’m not alone this fight!!!!!

  39. Colleen
    September 5, 2010 at 1:32 pm

    I can understand both points of view. Initially, I was opposed to Asperger’s being clumped in together with what I call “regular Autism”. However, I quickly changed my tune when I realized that having everything under the label of “Autism Spectrum Disorder” would be beneficial to people like me. Because I have Asperger’s I was not able to qualify for Medicaid and Social Security Disability and being poor and socially challenged I feel I should qualify. I am for anything that helps those on the Autism Spectrum to get the services they need.

    I do, however, disagree with Hannah saying that Asperger’s is not Autism. Hannah, if you read this I want you to know that I feel it is important for you to accept that Asperger’s is a type of Autism. If we truly want to be able to accept and be happy with who we are then we need to accept this fact. Furthermore,I also agree that Autism is a spectrum disorder and we need to treat it as such. We (including those of us on the spectrum) need to stop generalizing when it comes to Autism! It is not a “one size fits all disorder”! It affects everyone differently! Hope this is of help to you, Hannah, and to others as well!

  40. Janet
    September 5, 2010 at 4:32 pm

    “On the contrary, it sounded to me that Hannah believes the public would see her Asperger’s as less of a disability, and wants them to know that is isn’t ‘mild’. It seems like an argument of symantics at times. I also don’t believe Hannah was trying to belittle anyone who is autistic. That being said, I am a special education teacher, and so far, have not seen someone with Asperger’s being excluded from services..in fact, it already is seen as on the autism spectrum educationally, so maybe they are trying to make the ‘labelling’ system easier to navigate for professionals and families alike. The spectrum does imply a variety of needs and abilities. If there are commonalities, then Aspies may still call themselves that. Autism and PDD-NOS, Asperger’s, in my education were all sub categories of the larger ‘label’ PDD. In other words, PDD is the umbrella term, not autism. Even though education uses Autism as the ‘category’.

    • Cheryl
      September 9, 2010 at 3:00 pm

      Janet:
      As I said, in the State of California you are NOT eligible for Regional Center services if you have an Aspergers diagnosis. You are eligible if you have an autism diagnosis. Besides providing ABA therapy in the home and group home living, up until last year these services also included hippotherapy, summer camp, social skills groups, etc. In my state there are HUGE differences between the services one gets. Aspies-NOTHING, Autism-many services.

  41. Roy
    September 5, 2010 at 8:15 pm

    OK,
    So our kids,or kids we know have autism or asperger’s. In relation to the authors comments and realizing that she does have AS, we have to ‘overlook’ the tone and read between the lines. Knowing what we know about both (for a lack of a better word) disabilities, and remembering that social skills is lacking in these kids, we should come out with what the author is probably trying to say. Her diagnosis is different than the next kids. It does not matter if it is a DX of AS or PDD-NOS or ADD/HD, Each child is unique, as is -or should be- each diagnosis.
    I do not agree with what the author states about ‘being better’ than an Autistic, but do understand her worries.
    As far as an AS *maybe* being able to get aide easier, this may come back the other way where now HFA will not be able to receive Community Aide.
    What needs to be done, is to have the Politicians,doctors and psychologist realize that all ‘Special Needs’ children DESERVE to have help ** NO MATTER WHAT THE DIAGNOSIS **
    So stop sitting in your offices and trying to make your job look important, by coming up with ways of changing things around. Help in the diagnosis AND ‘treatment’ of our children

    • Sam
      September 24, 2010 at 1:33 am

      Roy,
      Thank you for your intelligent comment. Parents like you are the reason we can get things done for our children. Let’s take Hannah’s opinion as valid, it’s her opinion and she is entitled to it, and focus on what really matters; how we can ensure the continuation of research and increase of availability of services to children who need them, regardless of their diagnosis which really only serves as a means to access services.

  42. September 6, 2010 at 12:22 am

    My granddaughter has autism, and I am very offended by the tone of this article. It won’t help my granddaughter or either of my Aspie nephews to to away with the Asperger’s diagnosis in the DSM-IV, so I have no problem with the author’s basic appeal. I do, however, have a problem with her hostility toward people who are more severely affected than she is. I don’t kow where she gets the idea that describing Aspergers as “high functioning autism” makes anyone think that it is not a serious condition. It seems that she is more concerned with defending her turf as one associated with brilliant people than with anything else. Since when did being verbal count for more than being a decent human being? It seems to me that this article further reinforces social stereotypes. Here’s a thought – NO ONE should be dumped in an institution and abandoned as “unprofitable” and “incapable”.

    The author asserts that the Asperger’s diagnosis must remain because doing away with it would raise the need for more questions regarding the appropriate treatment for a newly diagnosed child, yet she acknowledges that Asperger’s also represents a spectrum. There isn’t a one-size-fits-all approach for Asperger’s any more than there is for Autism. Questions aren’t to be feared or done away with. They are a necessary part of the dialog needed for figuring out what works for each individual in terms of treatment and helping people outside the autism community understand that, verbal or not, each person has their own strengths and value.

  43. Annette
    September 6, 2010 at 2:55 am

    Mary Luce :
    As a mother of an autistic son, I am angry that such bigotry and vitriol are given a forum on Autism Speaks. It is this type of attitude that further stigmatizes all autistic children. … I wonder why the author, who wants nothing to do with the term “autism”, would want to publish this blog on an autism website. … Just because you have a disability does not give you a free pass to attack others. There are many good reasons for both sides of the diagnosis argument, but “I don’t want to be associated with them because I am so much better than them” is not one of them.

    Bingo! Mary, I could not have said it better. Thanks to everyone who call out the attitude.

    Hannah, if you want to integrate successfully into the rest of the world the first thing you need to learn is that you are no better than anyone in it…Autistic of otherwise.

  44. Loramath
    September 6, 2010 at 3:35 am

    This article should be deleted from this website, it makes me quite angry to read it.

  45. Debbie Crosby
    September 6, 2010 at 12:07 pm

    I think the sheer volume of response supports articles like this being posted. The author has a unique perspective, and no less 1st Amendment rights than any of us. If you disagree, post your response. Open the dialogue. Shed light on the ignorance…and I do not mean to imply the author is ignorant. I think she is demonstrating a trait many who deal with spectral disorders recognize: narcissism. Part of the disorder is the inability to exercise empathy for other. They aren’t being mean spirited; they just can’t do it. These forums are probably one of the safest ways for everyone to have a voice, and learn from one another. Don’t censor ANY discussion on matters related to the spectrum of Autism and/or Aspergers. Keep the dialogue going and clarify what needs to be clarified. Our kids have little enough voice as it is.

    • Jen
      September 7, 2010 at 12:05 pm

      Debbie, I agree with everything you said.

      I do not believe Hannah was being intentionally mean spirited. I think her article clearly supports the empathetic challenges she is facing. The comments will probably be very shocking to her when she reads them.

      I am quite sure she did not understand how her words were going to affect others. Maybe that is the true intent – and underlying lesson to be learned by the ‘typical folk’ – from this article.

      Personally, I prefer to read all opinions regarding ASD issues, whether or not I agree with them. (or their tone) And especially from those on the spectrum. How else can I fully prepare myself for the challenges my children are going to face throughout their lives?

    • Cordelia
      May 19, 2011 at 1:46 am

      No Debbie, I don’t think that’s true. I don’t think the author lacks empathy. I just think the readers on this web site lack objectivity and rationality. The only people who are offended by this article are those who have some kind of intimate connection to autism, like an autistic family member. They read this article from a biased point of view that spins the author’s comments completely out of proportion and overreacts to any statement about autism that is even slightly negative. A person who does NOT have an emotional attachment to autism and reads this article in a literal, unbiased manner would realize that this article does NOT degrade OR stereotype autistic people, does NOT say that Aspies are superior to autistics, and is NOT insulting AT ALL! I know this because I have shared this article with people who do not have autistic relatives and they were NOT offended by it, they actually understood what the author was REALLY trying to say, and they actually gave this article the respect it deserves. The readers on this web site are the ones with the problem, NOT the author!

  46. Loramath
    September 7, 2010 at 9:39 am

    You are right, sorry for my angry reply.

  47. Barbara Pons
    September 7, 2010 at 2:05 pm

    I totally agree with Debbie…..I don’t believe she meant to be hurtful to those on the autism spectrum. I do believe that they should have their separate labels but I always thought aspergers was already part of the austim spectrum. They have mainly the same social skills issues.

  48. Kerri Oastler
    September 7, 2010 at 3:45 pm

    While I can understand being angry at people for not giving you the same chances as everyone else, and while I can understand your frustration at the ignorance of the general populace, I cannot agree with your message.

    I have a 5 year old non-verbal son on the spectrum. Even though he does not have the language others have at his age it does NOT mean he is less intelligent. All people have strengths and weaknesses, and while his weakness is his communication, his strengths and intelligence outstrip most others his age.

    Different not less.

    As a community, no matter what the disorder, we need to support and help one another not insult and condescend. The rest of the world will make things hard enough as it is.

  49. Anne
    September 7, 2010 at 5:38 pm

    Based on the negative comments above, I think I understand that many of you would like to shut out someone who actually has the disorder. I, for one, celebrate the fact that this young lady with Asperger’s is college educated, aware of the issues that face her and is articulate enough to advocate for herself. Way to go Hannah!

    • Grapes
      September 12, 2010 at 7:26 pm

      I don’t want to shut out people with the disorder. I would be a hypocrite to do so. What I and others disagree with is pompous tone in the young lady’s argument.

  50. Debbie Crosby
    September 8, 2010 at 10:31 am

    Anne, I think the people who have reacted as strongly as they have, did so out of a natural defensive action they naturally resort to , on behalf of their own children. There are elements of Hannah’s editorial that would I would consider highly offensive, if they were made by someone off the spectrum. Given they are made by someone on the spectrum, I accept them as significant. What needs to be considered when celebrating the collegiate laurels of this woman, is the lack of balance in even considering the other side of the argument, any research into situations that could possibly benefit from the DSM-V remaining the way it is, or empathy into the gifts all human beings (on the spetrum and off) bring to the table, if we will bother to acknowledge their presence. My child may never be able to artiulate himself as well as Hannah can, but he is far more empathetic to those around him. Neither is better than the other, just different.

  51. Loramath
    September 10, 2010 at 6:09 am

    I wasn’t actually angry at the author of this message, but at the editor’s (website) lack of advice to her so that she would have chosen some other way to deliver her message, which I understand and probably share up to certain extent.

    • autismspeaks
      September 10, 2010 at 9:44 am

      It is noted that these words are the opinion of the author, not necessarily representative of Autism Speaks. We aim to present a variety of opinions from members of our community. The author’s viewpoint is simply that – her opinions.

  52. September 27, 2010 at 1:53 pm

    This comment is very offensive “someone who should be institutionalized and cannot live independently.” My son is dually diagnosed with down syndrome & autism as well as severe mental retardation (DSM lingo). I suspect you were not trying to be rude but have a bit of difficulty thinking from another person’s perspective.

    My son is not meaningless or purposeless but yes I often get questions about him from strangers who are not aware of IDEA or ADA and are genuenly surprised that he attemds school and lived at home. He has started his journey towards independent living with supports with my watchful eye to help advocate. He was wonderfully made by God just like you were and every other typical child out there. Everyone has their own cross to bear and talents to give.

    I do agree that the DSM-V should not condense the two criteria. It is very difficult to get a diagnosis if you already have down syndrome. The autism symptoms were hard to distinguish from the symptoms of down syndrome which do over lap a bit. Condensing the autism and aspergers will make it more difficult. Mental retardation can be co-occuring with either autism or aspergers so that is not really the main difference between the two. Professionally I find the distinction very helpful. Anything is better than PDD-NOS.

    Use your talents and abilities to advocate for the ones who can’t communicate as well as you can. You are more a like than different in this human experience. Just some friendly advise from a job coach and mother.

  53. Jill
    October 3, 2010 at 11:29 pm

    Leave it to an Aspie to tell it like it is…right on!!!! I agree 100%

  54. Doc
    October 30, 2010 at 2:14 am

    For me, a proud Aspie, the main reason to separate the Asperger’s diagnosis from the Autism diagnosis is because of the push eliminate Autism. I am proud to be an Aspie, and I would never want to be cured. I feel very threatened by the idea that because the unique way that my brain functions is “out of sync” with today’s society, people like me should be subject to so-called cures until we are exactly like everyone else. If Asperger’s and Autism continue to be conflated in the DSM, our unique ways of looking at and being in the world will be eliminated, and the world will be a sadder place for it.

  55. Ben
    November 13, 2010 at 10:02 am

    I come at this as an outsider. I don’t have any family members or close friends with autism or aspergers. But this sort of article PLUS the comments from this community help me to understand the issues that surround labeling and categorizing these things. I can understand Hannah’s point of view. I can also understand how putting an article of this nature on a website intended to support those close to autism can incite a mighty outcry, as it did. Kudos to everyone who tried to hold this conversation in perspective; I think this is an important conversation to have.

  56. Verdandi
    April 17, 2011 at 10:46 pm

    There is no separate “Asperger’s spectrum” Dr. Tony Attwood has pointed out that the majority of people diagnosed with Asperger’s Syndrome also fit the criteria for autism or PDD-NOS.

    The change in the name doesn’t take away the “aspie” identity. No one has to stop calling themselves “aspie” just because the DSM-V doesn’t include the name any longer.

    In the time I’ve discussed with people that I am autistic, every time I’ve used the term “Asperger’s Syndrome” people have asked me, “isn’t that a kind of autism?” People already know the connection. I don’t personally see the point of the separation and prefer to describe myself as “autistic” rather than as an “aspie” or as having Asperger’s Syndrome.

    I’m not particularly worried about people who have negative attitudes about autistic people having a negative attitude about me because I am autistic. Or rather, I should say I do not think saying I am an “aspie” will shield me from their prejudice. I don’t think “neurotypicals hold stereotypical and often negative views about autistic people” is really a good enough reason for me to want to disassociate myself from the label “autistic.”

    • Verdandi
      April 17, 2011 at 10:47 pm

      Oh, just noticed the date! Oops.

  57. April 18, 2011 at 1:04 pm

    This is such a silly thing to be worried about. Aspergers was always considered to be a form of autism. How would changing the name of the condition create more stigma? Who cares? If it’s medically accurate, then why lie about it? You could call it shoehorn syndrome and it wouldn’t change anything. Besides, what less stupid sounding, aspergers or autism? I think the latter.

    Maybe it’s just me, but I’ve never been uncomfortable with the term “autistic”. Maybe that was because I was first diagnosed with Autistic Disorder (believe it or not, it does happen quite frequently). The whole point of the new criteria is to assess people on an individual basis (which makes far more sense to me).

    Aspergers is not “mild”, but it is “milder” than classic autism. That’s what they mean by “mild”.

    Complaining about how AS is not the same as ASD is like complaining about dysthymia and how “OMG! Don’t call it depression! there’s a lot of stigma attached to that”.

    This is all about semantics- it’s got nothing to do with the scientific facts.

    • Debbie Crosby
      April 18, 2011 at 2:22 pm

      Mindblind, semantics, aside, removing Aspergers as a subcategory for Autism will impact many children in America. Here’s why. Special Education does not go by diagnosis, it goes by eligibility. Even WITH Aspergers being under Autism, school districts are resistant to accept the eligibility of AU, if a parent comes in saying their child was diagnosed with Aspergers. The school is more likely to qualify them as eligible under ED, or Emotionally Disturbed. In a perfect world, SPED would service the individual needs of the child, regardless. But this world is FAR from perfect. There are Related Services through SPED that are not even mentioned UNLESS a child is eligible under AU, so it is about MUCH MORE than semantics. Children on the spectrum are getting short-changed on their education as it stands now. Removing Aspergers from the ASD section of the DMS will eliminate them entirely from SPED, unless they can quailfy under a different eligibilty critieria, often with far worse stigmas attached that AU has.

      • Verdandi
        April 18, 2011 at 5:55 pm

        Removing Aspergers from the ASD section of the DMS will eliminate them entirely from SPED, unless they can quailfy under a different eligibilty critieria, often with far worse stigmas attached that AU has.

        What? Asperger’s isn’t being removed, it, autism, PDD-NOS, and childhood disintegrative disorder are all being folded into one diagnosis: autistic spectrum disorder (ASD).

        Children who are diagnosed with Asperger’s now will be diagnosed as autistic in two years. How will this deprive them of services?

  58. deborah crosby
    April 19, 2011 at 10:17 am

    I realize that. The original article was in support of separating them, which as an advocate, I can see eliminating many kids from eligibility for specific services. There is also a very strong movement in the aspy community to keep them separate. I may be behind on the final decision having been made, but last I knew, in January of this year a PROPOSED option was made. I had not heard either way, if it was accepted or not.

  59. Axelrod
    April 19, 2011 at 1:25 pm

    I think a lot of people misunderstood what the author was trying to say. If they simply read what the article PLAINLY says, they would realize that there’s nothing offensive about it. This statement seemed to generate a lot of anger, “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.” But, the author DID NOT say she agreed with that stereotype, she simply said that it existed. How is stating that a stereotype exists the same thing as agreeing with it? It’s not! She already thinks it’s unfortunate that people with autism are unfairly stereotyped and she just doesn’t want those stereotypes extended to people with Asperger’s. What’s so offensive about that?
    “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.”
    This is NOT a stereotype of autistic people. If you just read the sentence carefully, you should notice that she didn’t say ALL autistic people never learn to do these things. She said SEVERELY autistic people never learn to do these things. She recognizes that Autism has a wide spectrum. All she’s saying is that if people with Asperger’s are grouped with the autistic people on the SEVERE END of the spectrum, society might wrongly assume that people with Asperger’s suffer from the same infirmities as people on the SEVERE END of the autistic spectrum.
    “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.”
    Again, she didn’t say ALL autistic people never learn to speak. She said specifically SOME autistic people never learn to speak. Big difference!

    I honestly don’t understand how people can come to these false conclusions about the author’s intentions, when the BASIC TEXT says that the author clearly had good intentions and DID NOT stereotype or demonize autistic people.

    • Debbie Crosby
      April 19, 2011 at 3:42 pm

      Axelrod,if you go back and read my previous posts,I was very supportive of the authors position, and right to state her very valid perspective of Asperger’s. However, my position comes from understanding how separating Asperger’s out of the ASD category has the potential to impact millions of children who will not be found ELIGIBLE for specific services, if they are not diagnosed under the ASD umbrella. Special ED does not consider diagnosis, rather eligibility criteria. The only one that would currently support Asperger’s is AU, or Autism. I have numerous Asperger’s clients that school districts have tried to qualify under ED (Emotionally Disturbed) primarily because of this debate. The author herself stated that, “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.” Perhaps her family can afford to provide all those therapies and services on their own, but not everyone can. While the autohor states society puts too much emphasis on social skills, she acknowledges her own deficits and the difficulty in overcoming them. Asperger’s students are typically going to require some form of intervention at some point in their schooling. If we exclude Asperger’s from the diagnosis of AU to spare the ego’s of a few, many children with the same potential as the author could fall through the cracks. I do not see that as an acceptable payoff. Leave the DSM alone and let’s focus on education. Teach people the difference.

    • Lily
      May 16, 2011 at 12:35 am

      Thank you Axelrod! I have Asperger’s and I too am baffled as to how anyone can find this article offensive!

    • Lily
      May 16, 2011 at 1:13 am

      And let’s not forget these quotes, “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.”
      “Based on the misconceptions society has about AUTISM!”
      The author already said that people with AUTISM are unfairly stereotyped. So, why do so many readers think that the author was perpetuating stereotypes of autistic people? How can they miss what’s right in front of them? This is basic reading comprehension!

  60. Verdandi
    April 19, 2011 at 1:30 pm

    Ah, I totally misunderstood you.

    I am not fully up to date on what’s going on with the DSM-V but the current information that I can find shows that the single ASD category is still the case.

    I know some AS people are against the change and they all seem to focus on not wanting to be in the same category as “severely autistic people” which seems peculiar to me, sort of like if people with CP who have mobility suddenly started objecting to the idea of being grouped with people with CP who have no mobility at all.

    I came to the understanding that I was AS myself by reading writings by people diagnosed as autistic. To me they are basically the same category, just with different symptoms presenting with different severity for different people.

  61. Debbie Crosby
    April 19, 2011 at 4:25 pm

    Verdandi,
    My understanding is the DSM IV has separate categories. However they are all under the ICD-9 code of 299.0 (specific to “Autism”,)and subcategories considered “Pervasive Developmental Disorders” (with 299.8 specified as Asperger’s and 299.9 specified as PDD-NOS). The DSM V has proposed recategorizing everything under the main heading of Autistic Dsorders, all with the ICD-9 code of 299.0 and categorizing them as Pervisive Developmental Disorders. They will no longer be subjective to whether they are better qualified as Rett’s or PDD-NOS or Asperger’s. The issue of verbal versus non-verbal communiction has been reformatted to be included in the area of restricted, repetitive patterns of behavior, interests or activities.(Criteria B) Think about it. Non-verbals may repetitively rock, spin or flap. Verbals may have a range from total echolalia to full functioning speech, but it still qualifies as restricted to topics of their preference and interest. Verbal ability has long been the confusing factor in ASD’s. It was thought that speech equated to high functioning. Even Temple Grandin has said that her ability to communicate with people has not been her greatest challenge. It has been understanding her own deficits in social emotional reciprocity. The author states similar thoughts. The new criteria makes verbal speech 1 of 4 symptomologies, of which 2 of 4 must be met (Criteria B). All 4 symptomologies of criteria A must also be met, as well as all of criteria C and all of criteria D (1 item each, for C&D). The safety this criteria will provide, for ALL ASD students to be identified accurately as eligible under the AU for Special Ed will dramatically reduce students being forced to Alternative Educational Placements, will increase the level of related services that are offered (currently there are 9 related services specific to AU that are not automatically offered to other SPED students, but MUST be offered for students diagnosed AU), and greatly improve ASD students to be educated in the Least Restrictive Environment. They need such general ed access to improve their exposure to typical behavior. And Gen Ed students need exposure to SPED students, the earlier the better, for all to continue being educated effectively through graduation.

  62. Cordelia
    May 15, 2011 at 11:30 pm

    I have Asperger’s myself and I agree with this article 100%! Axelrod is absolutely right! There’s nothing offensive about this article and the author NEVER degraded autistic people. With the “should be institutionalized” comment, she was talking about how SOCIETY tends to view people with autism, NOT HOW SHE HERSELF views them! These readers are acting like you can’t even point out that a stereotype exists without agreeing with or perpetuating it and THAT’S NOT FAIR! The statement that people with Asperger’s have strong verbal skills, while autistic people don’t is a STATEMENT OF FACT, NOT an insult. She didn’t say that people with Asperger’s are better than autistic people because of that fact. It just means we’re different. That’s all. Also how can anyone think that the author said ALL autistic never learn the basic tasks of normal life or that ALL autistic people never learn to speak when she SPECIFICALLY said “severely” autistic people in front of the former and “most” autistic people in front of the latter? It just doesn’t make sense! I think the only reason people are offended by this article is because they have too much of an emotional connection to autism to read it objectively and rationally. I’m sure the author of this article must be really pissed off that so many people are completely misinterpreting what she’s saying because I know I would be.

    • Cordelia
      May 15, 2011 at 11:36 pm

      *SOME* autistic people in front of the latter! Sorry.

  63. Penny
    August 6, 2011 at 12:50 pm

    I am autistic and I was surprised at the negative responses. For example, you were not saying it is an insult to be called autistic because of any negative feelings about autism, but it is an insult to have your own kind of disabilities disregarded.

    You were often speaking about societies attitudes towards the different words. If society has a more negative reaction to’ autism,” it is understandable that a person would prefer “Aspergers.”

    I have a brother diagnosed with Aspergers. He is very different from me. When I was diagnosed as an adult, I studied a lot about the two different diagnoses, and I came to the conclusion that the two conditions are really different.

    I myself get annoyed when people say I must have Aspergers because I seem to be “high-functioning.” I feel the need to explain some of the differences — not because I feel put down as if Aspergers was somehow worse, but because I want MY differences recognized.

    I agree that Aspergers is not mild. My brother’s problems are quite severe. And there are people in my life who would say that my autism is not mild either, and that not only am I sometimes not “high-functioning” but there are times I can’t function at all.

    I thank you for expressing your ideas and feelings.

    • Verdandi
      September 2, 2011 at 7:43 pm

      Interesting:

      I agree that Aspergers is not mild. My brother’s problems are quite severe. And there are people in my life who would say that my autism is not mild either, and that not only am I sometimes not “high-functioning” but there are times I can’t function at all.

      Is that a distinction you’re making between a diagnosis of autistic disorder and a diagnosis of Asperger’s Syndrome? I am diagnosed with the latter, and there are definitely times I would not be “high-functioning” and there are times I can’t function at all.

      Maybe I have the wrong diagnosis, as I tend to relate more to people diagnosed with autistic disorder than those with Asperger’s, but I also don’t see a lot of major differences between these two groups in terms of symptoms and symptom expression. It is my understanding that AS primarily exists as a diagnostic category because a subset of people who were legitimately autistic weren’t being diagnosed because they were seen as “too verbal” to be autistic.

  64. September 2, 2011 at 5:12 pm

    “But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently.”

    That’s no reason to reject the label, that’s a reason to change society’s attitudes. (And I think many autism societies bear some blame for this stereotype since many awareness campaigns seem to be all about how terrible autism is and how vital it is to treat it or else the kid will be institutionalized. I know the Autism Society of Canada has publicly said that if an autistic kid does not get early ABA they will have to be institutionalized.) Even if someone has severe difficulties in many areas, with proper support they can live in their own homes in the community. No one should be institutionalized no matter what their disability is.

    I’m not retarded (I have an IQ of 137) but when people try to insult me by calling me a retard, I don’t mention my IQ. Instead I say that ‘retard’ is an offensive name, similar level of offensiveness to ‘nigger’, and that intellectually disabled people deserve respect just like everyone else does.

    Oh, and it’s not just low functioning autistics who get institutionalized. If I have a meltdown at the wrong place and time, I might get sent to a psychiatric ward. I’d like to think of institutionalization as something that could only happen to ‘other people’, but I know that’s not true.

  65. September 3, 2011 at 9:52 am

    As someone on the spectrum, I have come to believe the labels applied are of much less consequence than an accurate assessment of an individual’s own challenges within their environment. I don’t care what you call it. I want to know what it IS, what it DOES and how to work AROUND it. There is far too much subjectivity in diagnosis, far too much variability in treatment and availability of services, and in general far too little that is quantifiable and reproducible in both clinical and real world settings. What needs to happen, IMHO, is that the professionals in the field need to develop far more rigorous and objective methodologies and taxonomies. Autism is currently an epistemological and ontological mess. This lack of coherence leads to misunderstanding and hostility within the autistic community, among the very people that are working towards solutions. How can we educate the world outside of our own community when we can’t even come to consensus within it?

  1. October 2, 2010 at 6:54 am

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