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.

Steven Higgs on Autism - One Half Sentence for Autistic Disorder, One Whole Article for Aspergers

Steven Higgs has been a refreshing voice on the autism internet.  He doesn't simply regurgitate the official line on issues and his journalism background and writing skills are always helpful.  When it comes to autism "spectrum" disorders though Steven Higgs does what most in the mainstream media and on the internet do ... he ignores almost entirely those with Autistic Disorder, those most severely affected by autism disorders, and writes an article about the entire autism spectrum of disorders in which he focuses on Aspergers.

In Autism's generation gap, a lesson re-learned Steven Higgs relates his experience, and those of parents of autistic children that he has spoken with, when they realized certain essential truths about "autism".  Higgs mentions ... in one sentence ... his experience with "full blown autism":

"Travis is the first autistic person I've actually conversed with. Over the course of this project I've interviewed a half dozen parents with autistic kids; shaken hands with, observed and photographed a 22-year-old man with Autistic Disorder, also known as "full-blown autism," who lives in a group home in Indianapolis and requires professional care, 24-7; and shared space with (but only caught a fleeting glimpse of) a 15-year-old girl with Asperger's."

The highlighted words in the preceding quote are the only mention of Autistic Disorder in this article about "Autism's" generation gap. The rest of the article is about Aspergers.   Like almost all mainstream media and internet articles the Bloomington "Alternative" journalist's essay is anything but alternative. It is yet another article in which the author talks about autism by taking the easy route, by focusing on the high functioning persons with Aspergers  exemplified by the corporate board members of ASAN  and its leader Ari Ne'eman,  a very intelligent, high functioning person with  excellent communication and social skills, and curiously enough, a diagnosis of Aspergers, who has been appointed,  first by himself, then by his media and political connections, to speak on behalf of the entire purported autism spectrum. From Jim Sinclair to Temple Grandin to Michelle Dawson to Amanda Baggs to Alex Plank to Ari Ne'eman to this  Steven Higgs  article,  the public rarely  sees those most severely affected by autism disorders.

To his credit Steven Higgs at least mentions, albeit in one part of one sentence, the existence of persons with Autistic Disorder  who require 24-7 care.  In itself this brief mentions a bit of autism reality rarely seen outside this, and a few other,  Non Neurodiversity,  autism blogs.

That small mention of someone severely affected by Autistic Disorder is a huge step forward in mainstream media and internet discussions of the alleged  autism "spectrum".  But more is needed to end the misrepresentation of autism spectrum disorders and the banishment of the original, severely autistic from public consciousness. Much more.

TAAAPP - Autism's Confused Anti-Cure, Anti-Parent Movement

Despite the increasing body of knowledge revealing the neurological bases of autism, despite the fact that people who call themselves autistic either have, or are adopting by self-diagnosis, a medical diagnosis which defines autism as a disorder, despite the severe self inflicted injuries which threaten the health and lives of some autistic persons, despite the lives lived dependent on others in various dependent residential care facilities and institutions there are those, particularly on the internet who claim that autism is not a disorder and should not be cured.

There are some in the autism anti-cure movement who acknowledge that it is a disorder, particularly when they are seeking disability accommodation from employers or the provision of government services, but who still say that autism should not be cured. Implicit in this perspective is an anti-parent theme which emerges fully when parents describe candidly and honestly the realities faced by their autistic children particularly the more severely autistic children. Speculating about whether historical figures such as Einstein or Van Gogh were autistic is fine with the anti-cure movement. Touting any autistic savant, or accomplished autistic persons like Temple Grandin is politically correct but woe to the parent who dares speak honestly on behalf of their autistic child.

An interesting example of The Autism Anti-Cure Anti-Parent Perspective which I will refer to by the acronym TAAAPP can be found at Autism is NOT a disorder that NEEDS to be CURED a blogsite operated by someone called Cathy who does not disclose her interest in autism other than her obvious admiration for Michelle Dawson. Cathy only began blogging this month and has only blogged once - "comments re Facing Autism in New Brunswick". This comment contains two of the themes which identify the TAAAPP, anti-autism cure and anti-parent and I reproduce it here in its entirety:

comments re Facing Autism in New Brunswick

I have read this article in which Michelle Dawson(autistic) is mentionned and Erin Anderssen (mother of autistic individual).

I guess my main frustration is that individuals such as Erin are looking to somehow modify their childs behaviour. We live in a society that unfortunately is not tolerant of individuals.

I believe that Autism is not a disease to be cured. When is society going to change their way of thinking and allow for all differences, not just acceptable ones.

As far as specialized clinic's and residential care, shame on you parents that give up and take the easy road out.

Erin maybe if you spent more time with your son, rather than trying to denounce Michelle Dawsons "Scathing remarks" as you so put it, you might be surprised at the outcome.

Apart from Cathy's anti-cure belief she also expressly articulates, in the highlighted comments the anti-parent hostility that underlies much of the TAAAPP and Neurodiversity ideology. She expressly denounces parents who seek specialized clinical care and residential living for their autistic children. I am not sure if Cathy intended to denounce Erin Andersson of the Globe and Mail, or if her comments were directed at me personally, but she again makes it clear that parents should not be weighing in on autism issues on behalf of their autistic children - unless of course they agree with anti-cure icon Michelle Dawson. Cathy's logic is, unfortunately, confused by any measure, but it is a clear and concise reflection of the confused logic of Autism's Neurodiversity and TAAAPP ideologies.

For Cathy's benefit though I will plead guilty, guilty to her charge of trying to modify my son's behavior. Guilty of trying to modify his behavior to prevent him from banging his head on the wall until he injures himself, guilty of trying to modify his behavior to prevent him from biting his hands, wrists and ankles. I plead guilty to trying to modify his behavior to prevent him from walking into automobile traffic unaware of the consequences. I plead guilty to advocating for government funded pre-school, evidence based, autism interventions for my son and other autistic children. I plead guilty to advocating for autism trained teacher aides, resource teachers and autism suitable modified learning environments for my son and other autistic children.

Cathy, I thank you for showing me how intolerant I am in imposing on my autistic son Conor my beliefs that he should enjoy as full, enriched and rewarding a life, with as much independence, as possible.

autism

Autistic Adults Lack Vital Services

When people think of adults with autism they tend to think of Dustin Hoffman's role in "Rain Man", or real people like Temple Grandin Ph. D. one of the most accomplished autistic adults in the world. Others might think of anti-ABA crusader Michelle Dawson who has appeared before the Supreme Court of Canada and the Canadian Standing Senate Committee on Social Affairs, Science and Technology as part of her ongoing campaign to prevent Canadian governments from funding Applied Behavior Analysis interventions for autistic children. Here in New Brunswick many people would think of Jason Oldford who has long been involved in efforts to help autistic children and adults in New Brunswick. Mr Oldford also appeared before the Canadian Senate Committee and offered a positive voice in support of efforts to assist autistic children with ABA intervention.

When thinking of autistic adults most people will not think of the 50 year old autistic woman who can not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. This sad case is not an isolated event. In Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds (1997) Bernard Rimland exposed the horrors that resulted from closing down institutions that provided residential care and treatment for autistic adults and other persons with developmental and mental impairments. Rimland cited the 1993 report by US Congressman Ron Wyden which noted that:

"the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business.. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies."

Rimland cited a disturbing pattern of abuse, neglect, and mismanagement and some terrifying statistics:

"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:

• "Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'

• "Former employees of one facility reported that prescribed medications for residents are routinely discarded."

• Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.

Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."

As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually non-thought) have been forced to change their tune.

In Australia both government and opposition parties have recently announced funding packages to provide early intervention for autistic children, a critically important service. Autism advocates and service providers though remain concerned that the needs of adolescent and adult autistic persons, most of whom would not have benefited from receipt of ABA intervention, remain neglected. Ken Baker, chief executive of National Disability Services, said the Government's plans were a strong foundation that the:

"challenge now is to ensure that services for people with autism, where required, are also readily available later in life," Mr Baker said.

In Canada, in the current Ontario election campaign, debate has taken place around the provision of Intensive Behavior Intervention services to school age children and the removal of waiting lists for autistic children to receive services. There has been very little mention, if any, of the needs of autistic adults; of the residential care and treatments needs of our most vulnerable autistic adults.

Here, in New Brunswick there is a lack of information available concerning actual conditions facing autistic youths and adults living in group homes. My own experience as an autism advocate and discussion with other advocates indicates that staff in New Brunswick group homes lack autism specific training. As a province, as a society, we have failed our more severely autistic youths and adults by failing to provide appropriate residential care and treatment. In New Brunswick our more severely autistic youths and adults have been sent out of province to other provinces and in some cases to the United States to receive treatment. In one instance an autistic youth who had been charged with no criminal offence was sent to reside on the grounds of a youth correctional facility because that was the only accommodation available for him while he awaited treatment at the Spurwink facility in Maine.

We have to do more for our autistic youths and adults. We have to ensure that residential accommodations suitable for autistic people are available for them, accommodations in which they can maintain ties with their families and friends in safe, hygienic settings. We also need institutional care facilities for the most severely autistic; facilities at which they can receive proper care and treatment.

It is time we stopped pretending that privately run group homes operated by poorly, or untrained, staff are a fix all solution to the very serious residential and treatment needs of autistic youths and adults. It is time we started talking about autistic adults and their needs.