Friday, October 05, 2012

Neurodiversity Author and Ideologue Steve Silberman ALMOST Acknowledges Low Functioning vs High Functioning Autism Reality


Neurodiversity autism author and ideologue Steve Silberman ALMOST acknowledged the common sense reality of differences in autism function levels but at the last minute he turned and walked away once again. In an article at Scientific American  titled Contributors Lee Billings and Steve Silberman talk autism, space travel, and extraterrestrial life (Part 1)  Silberman talks briefly about the realities of low functioning autism and how the challenges they present COULD lead one to conclude that there really are differences in functioning levels. Then he abruptly struts away and denies those same differences. He, once again, takes the decidedly Non-Scientific American  ideological perspective that parents and clinicians who recognize differences in functioning levels are simply wrong and that the high functioning autistic persons he knows and adores  who claim that HFA and LFA are meaningless labels are right:

Lee: Is there any emerging consensus about the wide variations in the severity of autism?
Steve: I would say that one emerging consensus is that the idea that there is a single, unified condition called “autism” is little more than a useful fiction. This fiction allows us to address certain similarities across a very broad and diverse spectrum of conditions, and enables government agencies and insurance companies to offer services based on a single box labeled “autism” that can be ticked on a form. But that monolithic notion doesn’t reflect the actual reality, which is much more complex. What we call autism is probably a cluster of many different conditions, rooted in a wide variety of genetic predispositions and epigenetic triggers, which exhibit themselves in many different ways, including variations in severity.  The truth is that there are many “autisms,” rather than one “autism.”
Lee: Could you talk more about the problematic distinctions between “low-functioning” versus “high-functioning” people with autism? What alternative is there to this classification structure?
Steve: Obviously, the language of “high-functioning” versus “low-functioning” is very tempting to use, and most people—that is, parents and clinicians—use it. If you have a kid who can’t talk or use the toilet, rarely seems to connect with the people around her, appears to be profoundly intellectually disabled, and bangs her head against the wall, it seems appropriate to classify her as “low-functioning.” On the other hand, if you have a guy with an Asperger diagnosis who has a job writing code or fixing luxury cars and has a wife and kids of his own—it seems easy to call him “high-functioning.But the autistic adults I know hardly ever use those two terms, because they know better. Even people who are classified as high-functioning—like John Elder Robison and Temple Grandin—really struggle with some aspects of life that most neurotypical people don’t have to struggle with.  At the same time, some research into “low functioning” individuals in recent years indicates that they may have much more going on inside them than is usually visible from the outside. That’s one reason why the development of alternate forms of communication for people who have difficulty with spoken language—and we’re talking about iPads here, an “assistive technology” that many neurotypicals find indispensable these days—is so important. I’ve interviewed some autistic people who would be written off as “low-functioning” by most people, but once they get an iPad with text-to-speech apps in their hands, they become as eloquent as poets.
Personally, I avoid using the terms “high-functioning” and “low-functioning” because I think they’re both misleading. The term “high-functioning” makes certain kinds of challenges invisible, while the term “low-functioning” makes certain kinds of intelligence and capability harder to see. Many “low-functioning” kids will eventually learn self-care skills and be able to communicate with some form of assistive technology. Once they can make their thoughts visible to others, you find out that they have very rich inner lives, and were always listening to what was being said around them. We need to find out what has worked in the lives of people like Robison, Grandin, and Stephen Shore—a guy who was considered low-functioning when he was young, and whose parents were told to put him in an institution. He’s now a professor at Adelphi University, and a delightful person. Once we find out what has worked for them, we can apply those lessons to the next generation of autistic people. That’s why Jenny McCarthy’s claim that “there were no autistic adults, it’s all now” is not just wacky and incorrect, it’s dangerous, because it deprives the huge population of autistic kids of visible mentors and role models whom they can learn from."

Silberman's claim is that because some persons once considered low functioning went on to communicate and excel in life it is therefore wrong to distinguish between low and high functioning autism disorders. This claim is absurd and lacking in common sense. As he has stated some persons with LFA have difficulty with the most basic functions in daily life like toilet training. Some engage in serious self injurious behavior. He could also have mentioned the autistic adults who live their lives not with assistive technology but in assisted living in varying levels of residential care including full time 24-7 institutional care. The realities of life for these people by any common sense measure are fairly described as low functioning compared to the very high functioning Friends of Silberman club ...  the Robisons, Grandins and Shores. 

Steve Silberman either lacks common sense and can not distinguish between these different functioning levels or he has simply chosen to turn and walk away from that truth in the interest of promoting his career and books as a leading author of the irrational ideology known as Neurodiversity. His public denials of the challenges, the more severe challenges facing low functioning autistic persons puts  him in the group of people who are obscuring public discussions about the natue of autism disorders and the needs of those who suffer from low functioning autism. 

I have visited Low Functioning severely autistic adults living in psychiatric hospitals. I have talked by phone with Michelle Dawson and I have met John Robison at the recent IMFAR conference in Toronto.  I have met very capable persons with High Functioning Autism and Aspergers here in New Brunswick.  These people are much higher functioning in their abilities to function in the real world than those living in residential and institutional care and Steve Silberman should know that. 

Shame on you Silberman.

7 comments:

Jim Reeve said...

One thing I've learned about autism is that no 2 people are the same. And people that were once considered "low functioning" sometimes turn things around. With that in mind, some high functioning people might regress to become lower functioning.

The truth is, it's hard to put a label on anyone's autism.

Special Apps, Special Kids said...

I think his point is that we have to be careful when using labels- don't underestimate what a person with a LFA label can do, and conversely, realize that the needs of people with an HFA label are often minimized. I have seen this first hand as the parent of an autistic indivual, and as a special educator. We still use labels, to give people a reference point, but that label should not define a person nor deny him/her opportunities or services IMO.

Autism Reality NB said...

Jim you say it is hard to put a label on anyone's autism? Really? A non vocal adult who needs 24 7 care and struggles with every aspect of daily life is NOT low functioning? A person with autism or Aspergers who runs a business, meets with Washington media and politicians or has a family is NOT high functioning? I absolutely disagree.

Autism Reality NB said...

Special Apps, with all respect, while you are kind to Mr Silberman your statement that he is just referring to labels is not consistent with what he said. He rejects any attempt to use low functioning and high functioning autism to describe the obvious differences between those who are much more affected by autism and those who are less affected by autism:

"Obviously, the language of “high-functioning” versus “low-functioning” is very tempting to use, and most people—that is, parents and clinicians—use it. If you have a kid who can’t talk or use the toilet, rarely seems to connect with the people around her, appears to be profoundly intellectually disabled, and bangs her head against the wall, it seems appropriate to classify her as “low-functioning.” On the other hand, if you have a guy with an Asperger diagnosis who has a job writing code or fixing luxury cars and has a wife and kids of his own—it seems easy to call him “high-functioning.” But the autistic adults I know hardly ever use those two terms, because they know better"

Silberman talks about how the autistic adults he knows hardly ever use those two terms BECAUSE THEY KNOW BETTER? He is saying that the terms are wrong. His authority? Obviously high functioning autistic adults. My 16 year old son does not understand terms like "functioning". The low functioning autistic adults that I met in psychiatric hospitals in New Brunswick do not understand such terms and do not FUNCTION on their own at all.

jonathan said...

I'm still trying to figure out where John Robison struggles in his life as Silberman alleges. He has admitted he has no disability of any kind. If this were true of him before age 40, then I don't understand how he got a diagnosis of any sort of ASD from that psychologist friend of his.

Proud Autistic. said...

The problem with the low versus high is that the classification of the diagnosis does not account for such a degree of variation. What someone call low functioning autistic is in real an autistic with comorbidity which make the total sum low functioning. We that has Asperger syndrome may also have comorbidity, which in fact may make us autistic which also is low functioning. This is, as Jim say, something which is impossible to know before one has much each person with autism spectrum disorder in question.

Offroad Artist said...

I see what Silberman is getting at. He is saying we have a drink and shouldn't call it "milk" because it might actually be coconut milk or goat milk. Not a super useful approach. With the added subtlety that either label, "low" or "high" functioning does have inadequacies in practice. There I agree with Silberman somewhat - but clearly there are other checks and balances in the language. "High functioning autistic" is an inadequate label, but it does have a package of meaning that most people are roughly aware of and understand. Same with "low-functioning autistic".

Where we may miss the mark is in the mid ranges, anomalies and fringe reaches of understanding. I am not sure what percentage of autistic people these represent.

Or, how about someone like my son, who has Down syndrome, but is also considered "on the spectrum", exhibiting strong autistic tendencies in some areas yet decidedly non-autistic in others. I would not describe him as either low or high functioning.

You need more than a square hole and a round hole. At the same time we have to be able to face reality.