May 5, 2022 02:17 PM
https://skepticalinquirer.org/exclusive/...-spectrum/
EXCERPTS: Back in the late 1970s and early 1980s, I worked at a residential facility for children with severe autism. These kids had been rejected from many other schools because, if left on their own, they banged their heads against hard objects until their skin split open, bit themselves and other people, and attacked staff members and other students. Many of the children were unable to communicate with spoken language and, as a result, used sign language or picture cards to convey their needs. It was very challenging work but also very rewarding. It was an experience I will never forget.
Today, you would be perfectly accurate in saying my former students were “on the spectrum.” Yet it is my impression that, in everyday conversation, the phrase “on the spectrum” is most often applied to people who possess all the most important abilities my former students lacked. Prior to the introduction of the spectrum concept, many of the people we most often hear from about autism might have been diagnosed with Asperger’s disorder. These people at the less severe end of the autism spectrum face important challenges, but many of them will be able to hold jobs and live independently. In contrast, a large proportion of my former students never went on to live independently and required substantial support for the rest of their lives. Yet according to the current view of the American Psychiatric Association, both groups suffer from autism spectrum disorder (American Psychiatric Association 2013).
[...] A more specific worry about the spectrum approach has been that children and adults at the severe end would be lost in the shuffle. There are still many individuals like my former students who will require substantial support throughout their lives. Their needs are quite different from those of people formerly diagnosed with Asperger’s disorder and other forms of autism. In response to this concern, a group of parents and professionals have recently formed the National Council on Severe Autism (www.ncsautism.org). It is clear from a position statement on their website that they believe the spectrum has not served people with severe autism well: “The broadening of the construct of autism in the form of the Diagnostic and Statistical Manual (DSM-5) criteria for Autism Spectrum Disorder (ASD) in 2013, while well-intentioned, has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals” (National Council on Severe Autism n.d.a).
In addition, the NCSA has objected to vocal activists on the opposite end of the spectrum who argue that autism is a mere “condition” and not a “disorder” and that people do not “suffer” from autism but just “experience” it (National Council on Severe Autism n.d.b). Today, many of the most outspoken autism advocates are people at the less severe end of the spectrum who have the gift of speech and may never have encountered anyone with severe autism.
[...] t seems clear to me that, at least for people with severe forms of autism, the introduction of autism spectrum disorder had implications that were not anticipated. The spectrum has not helped. It has fostered confusion and contributed to a lack of understanding of the needs of people with different forms of autism... (MORE - missing details)
EXCERPTS: Back in the late 1970s and early 1980s, I worked at a residential facility for children with severe autism. These kids had been rejected from many other schools because, if left on their own, they banged their heads against hard objects until their skin split open, bit themselves and other people, and attacked staff members and other students. Many of the children were unable to communicate with spoken language and, as a result, used sign language or picture cards to convey their needs. It was very challenging work but also very rewarding. It was an experience I will never forget.
Today, you would be perfectly accurate in saying my former students were “on the spectrum.” Yet it is my impression that, in everyday conversation, the phrase “on the spectrum” is most often applied to people who possess all the most important abilities my former students lacked. Prior to the introduction of the spectrum concept, many of the people we most often hear from about autism might have been diagnosed with Asperger’s disorder. These people at the less severe end of the autism spectrum face important challenges, but many of them will be able to hold jobs and live independently. In contrast, a large proportion of my former students never went on to live independently and required substantial support for the rest of their lives. Yet according to the current view of the American Psychiatric Association, both groups suffer from autism spectrum disorder (American Psychiatric Association 2013).
[...] A more specific worry about the spectrum approach has been that children and adults at the severe end would be lost in the shuffle. There are still many individuals like my former students who will require substantial support throughout their lives. Their needs are quite different from those of people formerly diagnosed with Asperger’s disorder and other forms of autism. In response to this concern, a group of parents and professionals have recently formed the National Council on Severe Autism (www.ncsautism.org). It is clear from a position statement on their website that they believe the spectrum has not served people with severe autism well: “The broadening of the construct of autism in the form of the Diagnostic and Statistical Manual (DSM-5) criteria for Autism Spectrum Disorder (ASD) in 2013, while well-intentioned, has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals” (National Council on Severe Autism n.d.a).
In addition, the NCSA has objected to vocal activists on the opposite end of the spectrum who argue that autism is a mere “condition” and not a “disorder” and that people do not “suffer” from autism but just “experience” it (National Council on Severe Autism n.d.b). Today, many of the most outspoken autism advocates are people at the less severe end of the spectrum who have the gift of speech and may never have encountered anyone with severe autism.
[...] t seems clear to me that, at least for people with severe forms of autism, the introduction of autism spectrum disorder had implications that were not anticipated. The spectrum has not helped. It has fostered confusion and contributed to a lack of understanding of the needs of people with different forms of autism... (MORE - missing details)
