The removal of Asperger’s from the DSM-V has created a lot of controversial arguments among the Autism community. Many believe that this was a mistake and that is taking away a part of an identity that all of the individuals with Asperger’s feel they were a part of. While others believe that this was a very good idea because Autism is a spectrum disorder, and it should be diagnosed as so, not with a specific, separate diagnosis. The people that feel part of the Asperger’s community are very upset by the removal, but the entire Autism community has been greatly affected.
In a recent study done by Donna Kite, about half of the participants voted opposed to the removal of Asperger’s from the DSM-V (Kite, 2013). Although this is just one study, seeing that the opinion was split fifty-fifty just further proves how controversial this issue is. Asperger’s is a pervasive disorder of the Autism spectrum. Those diagnosed with Asperger’s are considered “high functioning” with deficits in social areas and cognitive delay. Those with “low functioning” Autism not only have these characteristics but also have communication difficulties and repetitive behaviors (Ghaziuddin, 2010). Although the two do have characteristics that overlap, the two diagnoses are very different.
Those with Asperger’s do not meet the full criteria of the Autism diagnosis (Ghaziuddin, 2010) Therefore; this was the original reason for the separation of Asperger’s and High Functioning Autism (Planche, 2012). However since the two are so similar, it is unclear when one diagnosis should be used versus the other (Kaland, 2011). This caused the drive for the removal of Asperger’s from the DSM-V. By removing this from the DSM-V, the goal is that it will be easier to provide clear and accurate specifics for each individual case (Kite, 2013).
However, those among the Asperger’s community are very resentful towards the removal. It has in some ways, taken away the voice of those with Asperger’s (Elliman, 2011). In addition, the removal has now caused for a reevaluation of everyone previously diagnosed with Asperger’s (Planche, 2012). This is not only inconvenient but insulting to many people. Those among the Asperger’s community have a strong connection to the identity and believe it is apart of them. These individuals feel their identity is being taken away from them (Kaland, 2011). Removing Asperger’s from the DSM-V is like saying that part of these individuals does not exist.
A spectrum is a scale made up a wide range of characteristics. Autism is a spectrum disorder so each person diagnosed is placed somewhere on the scale based on their development, needs, strengths, and weaknesses. By doing this, one with Asperger’s can still be put on the scale, but can still be classified as “Autistic” without the separate diagnosis of Asperger’s. Since an individual can be placed on the Autism spectrum without the addition of the Asperger’s label, then the removal from the DSM-V is reasonable.
Although I do agree with the removal of Asperger’s from the DSM-V, I do not think it should have been completely removed. I feel very passionately about this topic since I have a brother on the Autism spectrum and have worked with many individuals across the entire spectrum of all ages. My brother would be considered to be on the very low functioning end of the spectrum. Even though the criteria of a spectrum is a wide spread of characteristics from one end to the other, the differences between someone like my brother and someone with Asperger’s, or “high functioning Autism” are extremely different. Although there are some characteristics that overlap, there are some characteristics that overlap between most disorders. When you look at someone like my brother and then someone with Asperger’s, it would seem as if the individuals had two different diagnoses. I do not think that Asperger’s should be a part of the Autism spectrum, but I do believe it should be it’s own disorder all on its own.
I love my brother and admire him for everything he goes through everyday. However, I am very jealous for him of those diagnosed with Asperger’s. My brother, Sammy, is 16 years old and cannot speak. He can address his wants and needs using an iPad program, ProLoQuo2Go, but does not understand the concept of conversation. I have no idea what he thinks about a TV show, his thoughts about people, his favorite color, etc. He has to be taught each item he may request, which takes time. I always wonder what it would be like if I was thirsty and could not get any water. I would be able to request it at least! But Sammy, cannot do this if he does not know the name of such an item, “water.” Sammy also is not toilet-trained so he is still in diapers and often has accidents on our couches or his bed. Therefore, my mom is constantly chasing him around checking his diaper and washing sheets or cushions. In addition to this, he has no concept of safety and treats things like a toddler might; throwing items, spilling things all over the floor, etc. This is just a small glimpse of my brother and his day-to-day life. These are the reasons that I am often jealous of someone with Asperger’s. Those individuals are able to speak, go to school with few interventions, can use the bathroom, can feed themselves, can get themselves dressed, etc. Sammy cannot do any of these things, at least without an intense intervention. This is why I do not think that Asperger’s should not be a part of the Autism spectrum.
In addition to the wide gap between characteristics, I mentioned how those with Asperger’s have an extreme unity and consider it part of their identity. Although I respect this, I do not understand why one side of the spectrum is viewed as “apart of an individual” while the other side is viewed as a “disability” or a “lapse in development.” I do not think that there should be any separation among the individuals on the spectrum based on their needs. If these individuals are all a part of the Autism spectrum, then they should all be viewed as one community; not the “Aspy community” and the “lower functioning.” There is already enough separation among typically developing individuals for the wrong reasons, although this is in no way an intentional harmful separation, there is no need for a separation among the spectrum. One part of the spectrum should not be viewed as better than the other, which is how I often feel.
Many know that the individuals on the Autism spectrum are completely different. One person with Autism is completely different from the next one you may meet. However, the differences between Asperger’s and the other parts of the spectrum are so different, there is no reason for it to be one in the same. Although I agree that Asperger’s should have been removed from the Autism spectrum disorder, I do think it should be considered a completely different disorder instead of just considering those individuals on the “high functioning” side of the spectrum.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.