Aspergers vs. Autism: Should they be considered the same?


The biggest controversy in Asperger’s Syndrome (AS) today is that those writing the Diagnostic Statistical Manual-V (DSM-V) are considering dropping AS as its own specified disorder. Instead they want to make it a category that falls under General Autism Disorder. The DSM has been the “go to” source for psychiatrists and psychologists in the United States since its first publication in 1952. In every new edition of the DSM, there are new diagnoses as well as advancements in medical practices and statistics on disorders that are placed in the book to allow for better psychiatric diagnosis of patients.[[#_ftn1|[1]]] This change in AS diagnosis would mean that AS would not be called AS, but would rather be deemed a mild form of autism based on the spectrum from mild to severe autistic disorder that the writers of the DSM-V are wanting to place in the manual to be published in 2013. Many people with AS as well as their family members do not like the change that the authors are considering. They feel that by labeling it as a mild form of autism as opposed to Asperger’s Syndrome would be labeling those with AS as something that they are not. Those with AS do not see themselves as autistic, thus they do not want to be labeled so. According to Dr. Kathy Marshack, a psychologist and family therapist, the controversial question in all of this is, “will changing the diagnosis change the way someone with Asperger’s is viewed?”[[#_ftn2|[2]]]

In this case study, I will be examining the much intertwined history of Asperger’s Syndrome (AS) and Autism and the circumstances throughout that history which eventually lead to AS being deemed and recognized as its own distinct disability. Following this, I will be breaking down the different arguments of each side of the controversy in order to better understand what is at the heart of the matter of each view point and what a change in the DSM-V would mean to those that are affected with AS and their families.


History of Asperger’s Syndrome and Autism

Asperger's Syndrome (AS) is named after an Austrian pediatrician named Hans Asperger. Asperger was born near Vienna, Austria in ­­­1906 who later went on to study medicine in Vienna. Asperger has been described as a lonely, remote child that had difficulty making friends with his peers. These, interestingly enough, are features of those with the same disorder that is named after him.
The pattern of those with AS are said to lack empathy, have one-sided conversations, low ability to make friends, clumsy movements and an intense absorption in a special interest[[#_ftn3|[3]]]. Autism is derived from the Greek work “autos” which means “self”. The term autism is used to describe people with the disorder due to the fact that they tend to be isolated to themselves and that they are detached from interaction with others. The first instance autism was used was in 1911 by a Swiss psychiatrist named Eugen Bleuler. He used autism in reference to symptoms of schizophrenia, which is not at all similar to the modern day definition, instead it caused much confusion in the history of autism.[[#_ftn4|[4]]]

Throughout his medical career, Asperger studied children and most of his scientific publications were mostly concerned with children that had autism. Asperger first used a modern sense of the word autism in 1938 when he gave a lecture about child psychology.[[#_ftn5|[5]]] His landmark study, published in 1944, detailed and described the symptoms involved in autism. The first definition stemmed from Asperger’s work, but was not the first use of the term where AS can be found. Asperger called the pattern of behavior and abilities. He found in the children he studied "autistic psychopathy" which means "self-personality disease".[[#_ftn6|[6]]] While Asperger was making his observations in Vienna, a man by the name of Dr. Leo Kanner, an Austrian physician performing research at Johns Hopkins University, was performing similar research and recording similar observations in eleven children in Maryland. Kanner presented his research on these children in 1943 in a paper entitled “Autistic Disturbances of Affective Contact”. Just a year before the studies of Asperger was published. It was in this publication that Kanner used the word autism for the first time in the modern sense and use of the word.[[#_ftn7|[7]]] In his work, Kanner used autism to “describe the withdrawn behavior” of the children that he had been studying.[[#_ftn8|[8]]] Asperger also used autism to describe the similar withdrawn behavior he saw in his patients in Vienna, but the children he observed were not as deficient in their language skills as those that Kanner had been observing.

In the 1960’s, autism itself became a separate and distinct syndrome. This distinction is important in Autism Spectrum Disorder history because it allowed autism to be clearly distinguished from schizophrenia, mental retardation, and many other developmental disorders that it had been confused or blended with for the previous twenty years.[[#_ftn9|[9]]] Throughout the 1960’s and 1970’s extensive research was done on those diagnosed with autism in hopes to find a treatment. The treatments that were researched during this time were by way of medications like LSD, electric shock therapy, and attempts at using various techniques to change the behavior of the individual. These behavior techniques were aimed at causing pain or punishment for the patient.[[#_ftn10|[10]]]

Although Asperger studied autism for the greater part of his adult life, it was not until 1981, a year after his death, that his research in this area started to become better known and used to challenge the previously accepted model of autism. Dr. Lorna Wing, a British psychiatrist, wrote “Asperger’s Syndrome: a Clinical Account” in which she used Asperger's work and research to challenge the model of autism that was presented by Dr. Leo Kanner in 1943. The challenge Wing presented was that Dr. Kanner believed that those with autism were psychotic, but through Asperger’s work it is seen that these people are developmentally disabled, especially in cognitive development. Kanner seemed to possess a pessimistic outlook for those with this disorder; while Asperger was particularly optimistic about treatment and the futures of those he studied calling them “little professors” in his works.[[#_ftn11|[11]]] This publication by Wing was also the first in which the term "Asperger's Syndrome" was used.[[#_ftn12|[12]]]

Even with Wing's challenge to the autism model in 1981, another decade passed before Asperger's findings finally started to be truly noticed by the scientific community.[[#_ftn13|[13]]] In 1991, Dr. Uta Frith translated Asperger's work from the original German into English. The work Dr. Firth did in translating his work allowed for it to be further investigated by others within the scientific community. Frith’s translation of Asperger’s work also aided in allowing others to see Asperger’s optimism of those with this disorder that they can be capable of normal or above normal intelligence.[[#_ftn14|[14]]] In 1992, Asperger's syndrome became a standard diagnosis. This shift occurred because the World Health Organization added it to its diagnostic manual called the International Classification of Disease (ICD-10). Two years later, in 1994, the American Psychiatric Association (APA) added AS to the Diagnostic Statistical Manuel IV.[[#_ftn15|[15]]]




Controversy


The interconnectedness of the history of Autism and Asperger’s Syndrome is a mild preview to the controversy that is being argued today. Through history, due to lack of knowledge of Asperger’s research, AS patients have been deemed autistic, at least until 1994. It is the lack of differences between the two disorders that is the basis for the DSM-V committee’s argument to not include AS as its own disorder, but rather to have it be diagnosed as a mild form of autism on the autism spectrum disorder (ASD). In an article in the New York Times, Dr. Simon Baron-Cohen, a doctor and researcher at the Autism Research Center at Cambridge University, writes “The committee argues that the syndrome should be deleted [from the manual] because there is not clear separation between it and its close neighbor, autism.” He goes on to say that the disorders a currently differentiated “by intelligence and onset of language” the committee thinks are not defined or qualitative enough reasons for the two to continue to be considered separate disorders.[[#_ftn16|[16]]]


Due to the lack of an apparent and clear separation between autism and AS there are others in the scientific community, like those on the committee for the DSM-V, that also believe the two disorders should be lumped together under the category of Autism Spectrum Disorder (ASD). Along with that, some experts suggest that the individuals should be evaluated and differentiated on the spectrum based on the level of severity of the case.[[#_ftn17|[17]]] In an article posted on Disabilityscoop.com the author summarizes that those who are advocating for a single term think that the system will be simplified for all involved due to the lack of differences between the disorders. Another issue that has been brought to light is the fact that making this switch might grant certain services to those with AS that they do not currently have because some states do not grant them services.[[#_ftn18|[18]]] Dr. Lars Perner, an Assistant Clinical Marketing Professor and a person diagnosed with AS, argues that because the variation between those that have AS is so great there is not a meaningful distinction between AS and other forms of autism. He also goes on to state, “From a practical perspective, however, I recognize that "Asperger's Syndrome" may sound somewhat less frightening to the parents of a newly diagnosed child than the term "autism" does.”[[#_ftn19|[19]]] Although AS may be considered less frightening to those it effects, there is not a clearly defined and distinct separation of the two and if there is so much variation among AS itself then AS and autism should be made into one diagnostic entity. From the same site, Australian psychologist, Tony Attwood argues that there is “a very important difference [between autism and AS]: the spelling.” Essentially determining that the only difference between AS and autism is the label given to the disorder and not much else. His insight and opinion are based in the idea that AS and autism are more similar than different and that they should be categorized and diagnosed based on of their similarities as opposed to their differences.[[#_ftn20|[20]]]


Just as there are those with the idea of making AS part of the ASD, there are also many that are strongly opposed and think AS should remain separate from autism. The differences that those on this side of the argument are citing are those that acknowledge the differences between those with AS and those with autism, how this change would impact in diagnosis and treatment of those with AS and finally how biological mechanisms might play a role in the difference. There are those, especially parents of children diagnosed with AS, who answer yes to this question. In an article from Examiner.com based in Seattle, WA, Caryn Sweeney, a mother of an AS child argues, “A parent of an autistic child might almost be offended to think a parent of a child with Asperger's struggle with the same things they do. Both sets of parents can have compassion and understanding with each other but they are living in completely different worlds. The Autistic child being ostracized for not connecting with people. The child with Asperger's being ostracized for being very gregarious but inappropriate, using all kinds of words and emotions that don't fit the conversations they are having.”[[#_ftn21|[21]]] Although the doctors and those that are on the DSM-V committee see autism and AS as very similar disorders, those that live with them on a daily basis see it quite differently under the basis that families of those with the different disorders deal with different struggles.


A fear with the removal of AS implicates “that individuals who meet criteria for Asperger’s would no longer meet the criteria for a diagnosis and their symptoms would either not be assessed in the first place or not result in services being provided.”[[#_ftn22|[22]]] Although, as mentioned above, it is easier in most states to get treatment for autism than it is for AS, those with AS may need different sorts of treatments than those that are provided under the ASD. In order for their treatments to begin, if the DSM-V committee makes the change in the manual they are considering, those with AS would more likely than not have to go back in and get re-diagnosed under the ASD. Baron-Cohen thinks that this change has “the likelihood of causing them confusion and [making them] upset seems high.”[[#_ftn23|[23]]] Added to the potential confusion is the potential to miss the opportunity to help people that may need it. There are experts that are concerned that the loss of AS as a diagnosis will inhibit people from going in and getting help. Within the general public positive or neutral view of AS can be found as a term, so that people are less concerned with being diagnosed with AS and might be more willing to go in and get diagnosed. Dr. Tony Attwood has been quoted saying, “If people are told they should be evaluated for autism, they will say, ‘No, no, no. I can talk.’ So we will miss the opportunity to assess people.”[[#_ftn24|[24]]] Not being allowed the opportunity to assess and help people is not what doctors’ want, but it may be a result of the shift in the DSM-V manual.


Baron-Cohen, a doctor who does considerable amount of research on AS, is opposed to dissolving AS into the ASD although he is not opposed to the ASD itself. His opposition is on the basis that “science hasn’t had a proper chance to test if there is a biological difference between Asperger Syndrome and classic autism”.[[#_ftn25|[25]]] Because a biological difference, or lack of, has yet to be determined the scientific community they should not be too quick to lump these two disorders together even if surface appearance characteristics are similar. Baron-Cohen and some of his colleagues have, in the last few years, published a study which identifies fourteen genes they have found to be associated with AS. If research, similar to that of Baron-Cohen, can be repeated experimentally and still find that these fourteen genes are in fact indicative to AS and more research is done to determine the genes that may cause autism, this research could be used in the future to scientifically link or separate AS and autism as disorders. This sort of research would likely not be published before the DSM-V is published; it seems Baron-Cohen is suggesting that this sort of research should be allowed to continue and “that there is reason to believe that more answers will emerge soon that would clarify this matter.”[[#_ftn26|[26]]]


Conclusion

Is the lack of difference between AS and autism enough evidence to lump them into a family in which they would be more closely related like siblings as opposed to being related like cousins? Should autism and AS be classified in a different manner as other disorders in the DSM, being based upon a known biological mechanism rather than based on observable, physical appearances and behavior? Should a decision of this magnitude affect the lives of many today and well into the future, be made without concrete and repeatable scientific evidence to back it? There is not enough scientific evidence and not enough research that has been done in order to prove that they are as similar or as different as they may seem. Because they are so closely related, yet remarkably different in other ways it would be worth the wait and would allow peace of mind, at least for a while, for those that are diagnosed with AS or those that are caretakers for those that have AS. Also, taking into consideration the damaging effects it can have on these people in society, re-diagnosis, and insurance quality, a delayed transition in this area would be beneficial. Because of the lack of solid, research based data that is founded on biological difference as opposed to surface behavior or appearance, the change of AS to an ASD would be very detrimental to the mental stability or world understanding of all those involved. Looking to the future, if the DSM-V committee decided to dissolve AS into ASD, it would be far more detrimental if this change occurred only to find that the biological mechanism of these two disorders are clearly distinct and separate. In which they could possibly be reassigned as a person with Aspergers Syndrome as opposed to a person on the mild end of the Autism Spectrum Disorder. Those that are writing and publishing the DSM-V should not charge ahead in dissolving AS into ASD. Up in till now the DSM has been a “manmade” system of psychiatric diagnosis, but there needs to come a time when these diagnoses start becoming backed by scientific evidence as opposed to socio-cultural theory. Changes like the one being discussed should be further evaluated and backed up by hard scientific evidence before it is allowed to alter the course of diagnosis and treatment for the rest of these people’s lives.


[[#_ftnref1|[1]]] http://writingthebody.wikispaces.com/Paradigm+Page
[[#_ftnref2|[2]]]http://www.kmarshack.com/_blog/Kathy_Marshack_News/post/Controversy_Stirring_Over_Possible_Changes_to_Asperger_Syndrome_Diagnosis/
[[#_ftnref3|[3]]] Wikipedia, Hans Asperger
[[#_ftnref4|[4]]] http://www.webmd.com/brain/autism/history-of-autism
[[#_ftnref5|[5]]] Autism, wikipedia
[[#_ftnref6|[6]]] Wikipedia, Aspergers
[[#_ftnref7|[7]]] Wikipedia, autism
[[#_ftnref8|[8]]] http://www.webmd.com/brain/autism/history-of-autism
[[#_ftnref9|[9]]] Wikipedia, autism
[[#_ftnref10|[10]]] http://www.webmd.com/brain/autism/history-of-autism
[[#_ftnref11|[11]]] http://blog.donnawilliams.net/2011/03/31/diagnosis-of-autism-before-the-triad-of-impairments/
[[#_ftnref12|[12]]] Wikipedia, Hans Asperger
[[#_ftnref13|[13]]] Wikipedia, Hans Asperger
[[#_ftnref14|[14]]] http://blog.donnawilliams.net/2011/03/31/diagnosis-of-autism-before-the-triad-of-impairments/
[[#_ftnref15|[15]]] Wikipedia, Asperger’s Syndrome
[[#_ftnref16|[16]]] http://www.nytimes.com/2009/11/10/opinionbaron-cohen.html?ref=opinion
[[#_ftnref17|[17]]] http://www.nytimes.com/2009/11/10/opinionbaron-cohen.html?ref=opinion
[[#_ftnref18|[18]]] http://www.disabilityscoop.com/2009/11/03/aspergers-dsm/6025/
[[#_ftnref19|[19]]] Dr. Lars Perner (aspergerssyndrome.org)
[[#_ftnref20|[20]]] http://www.lookingupautism.org/Articles/TonyAttwood.html
[[#_ftnref21|[21]]] Caryn Sweeny (http://www.examiner.com/special-needs-kids-in-seattle/the-asperger-controversy)
[[#_ftnref22|[22]]] http://www.psychotherapybrownbag.com/psychotherapy_brown_bag_a/2009/11/the-fate-of-aspergers-syndrome-in-dsmv-a-followup-to-last-weeks-article.html
[[#_ftnref23|[23]]] http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html?ref=opinion
[[#_ftnref24|[24]]] http://www.nytimes.com/2009/11/03/health/03asperger.html
[[#_ftnref25|[25]]] http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html?ref=opinion
[[#_ftnref26|[26]]] http://www.psychotherapybrownbag.com/psychotherapy_brown_bag_a/2009/11/the-fate-of-aspergers-syndrome-in-dsmv-a-followup-to-last-weeks-article.html