Neurodiversity - The Book

Hold Placed on Neurodiversity Advocate's Nomination in Senate

An article in the New York Times yesterday reported that neurodiversity advocate Ari Ne'eman's nomination to the National Council on Disability was being held up in the U.S. Senate because of an anonymous hold placed by one or more senators.  While it is not certain as to why the nomination is being opposed, it may be reasonably supposed to be due to the fact that Ne'eman's support of an "accept-us-for-who-we-are" perspective has rattled conservative forces in the autism community who operate according to a "find the cure" methodology similar to that used in campaigns to fight heart disease, cancer, and other medical illnesses (Autism Speaks being foremost among such groups).  The New York Times article quotes Autism Speaks co-founder Jonathan Shestack as saying:  “Why people have gotten upset is, he (Ari Ne'eman) doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t...”  (Ne'eman has Asperger's syndrome, a milder version of autism).  Rather than offering a reasoned argument for his organization's position, Shestack instead uses an ad homimen attack on the person of Ne'eman, suggesting that he lacks sympathy for the disabled.  This, despite the fact that Ne'eman has worked tiredlessly on behalf of ALL members of the autism community in his roles as Vice Chair of the New Jersey Adults with Autism Task Force, Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, board member of TASH and the Autism National Committee, and founder of the Autistic Self-Advocacy Network.  The real reason behind Autism Speaks' opposition to Ne'eman is that he propounds a philosophy of acceptance of individuals with autism and other disabilities, which challenges the medical model view held by Autism Speaks and related groups.  Neurodiversity suggests that people with mental health labels (including autism, ADHD, dyslexia, and other brain differences), are "differently wired" than so-called normal (or "neurotypical") individuals, and that their differences should be accommodated by society rather than being regarded as a "disease" that must be cured.  Neurodiversity is a civil rights movement proposing that individuals with mental health labels be protected against discrimination and prejudice in the same way that people of color, women, and other minorities are protected.  It is also akin to other parts of the disability rights movement which have pioneered substantial changes in society to accommodate to differences among the physically disabled, including curb cuts, wider stalls, ramps, and other architectural modifications.  Neurodiversity is a revolutionary movement that challenges the powers that be. These conservative forces, which serve to keep people with autism and other neurological conditions "in their place" through the medicalization of their differences, feel their power (e.g. their fundraising capacity, legislative clout etc.) threatened by this grassroots movement that Ari Ne'eman represents.  It is hoped that the senator or senators who have placed this hold on Ne'eman's nomination, will resist the lobbying efforts of Autism Speaks and related organizations, and approve his appointment to the National Council on Disability.  This move will ensure that the real voices of the mentally disabled (rather than their neurotypical surrogates) will be heard at a national level.

A Key Set of Resources for Neurodiversity: Assistive Technologies

Yesterday we looked at the impact that Universal Design for Learning tools can have for a neurodiversity classroom.  Today, we examine the role that assistive technologies can have in promoting "niche construction" for neurodiverse brains.  As we noted in our earlier post on neurodiversity and niche construction, one critical ingredient in improving the lives of those with mental health labels (e.g. autism, dyslexia, schizophrenia etc.), involves creating an environment or "niche" that meshes with the way in which those individuals' brains work.  In other words, rather than having to adapt to a given environment, the environment is made to adapt to each unique brain.  Assistive technologies represent a critical set of resources to help accomplish these environmental modifications.  For dyslexics, for example, there are a growing number of devices that actually scan printed text and translate it into the spoken word.   The kReader Mobile, for example, developed by futurist and inventor Ray Kurzweil, takes a picture of text (including mail, receipts, handouts, memos, and other documents), and then reads the text aloud to the user.  The electronic book Kindle, by Amazon, has a feature that, when turned on, will read the ebook out loud.  Also, there are speech to text software programs that allow the user to speak into a microphone, and have his oral language translated into printed text on the screen (a great leap from the old dictaphone-secretary combination). One example is Nuance's Dragon NaturallySpeaking.  Finally, there are many features in word processing programs that allow fonts to be increased, given color, turned into more readable fonts, and in other ways modifying text to suit the needs of individuals who have difficulty with reading skills.  These technologies represent only a small fraction of the assistive technologies (both high-tech and low-tech) that are out there for individuals with neurodiverse brains.  For people with autism, there are software programs that teach them how to interpret facial expressions and recognize different emotions.  For those labeled ADHD, there are the hundreds of apps available for an iPhone or Blackberry, that allow one to organize one's life, making these devices veritable Personal Digital Assistants (PDAs).  With the development of virtual reality software, even more modifications to the environment will be possible, allowing those who have previously been prevented from having access to a given set of experiences, to fully explore new worlds.  In a sense, assistive technologies can be considered extensions of one's brain, helping it to function more effectively, and thus considerably enhancing the lives of countless neurodiverse individuals.

Temple Grandin Speaks at TED Conference

On Friday, February 12, 2010 Temple Grandin presented at the cutting-edge TED Conference in Long Beach, California.  She shared some unique insights about being autistic, putting special emphasis on the ability to think in pictures and to home in on details, and illustrating these points with stories from her own life, including her work as an engineer/inventor of machinery to handle cattle. She expressed her concern that the gifts some children on the autism spectrum have, which might lead to a career in Silicon Valley, could be lost if parents or the schools focus only on what they can't do.  To see the 20 minute presentation, click here. 

Neurodiversity: A Concept Whose Time Has Come

  

Over the past sixty years, we’ve witnessed a phenomenal growth in the number of new psychiatric illnesses.  The American Psychiatric Association’s Diagnostic and Statistical Manual, first published in 1952, originally listed about 100 categories of illness.  By the year 2000, that number had tripled.  We’ve become accustomed to hearing in the news about “learning disabilities,” “ADHD,” “Asperger’s syndrome,” and other conditions that were virtually unheard of fifty years ago.  A report from the National Institute of Mental Health indicates that about one-fourth of the American population suffers from a psychiatric disorder in any given year, and an article in the Archives of General Psychology suggested that over the course of a lifetime, approximately half of all people may suffer from a mental illness sometime during their lives. Add to this the observation by Harvard Medical School professor John Ratey that many people have milder versions of psychiatric conditions (he calls them “shadow syndromes”), and we come to the conclusion that when all is said and done, nearly every individual in the country may have a psychiatric illness to one degree or another.

 

    This epidemic in the growth of mental illness suggests that there is a crisis in the making.  How much longer can we continue to add new psychiatric illnesses to the list, before it becomes apparent that we have moved too far in pathologizing a sizeable chunk of the American populace?  There is, however, an answer to this crisis, which I've begun to address in my new book Neurodiversity:  Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences (DaCapo Lifelong/Perseus Books, May, 2010).  The concept of neurodiversity provides a paradigm shift in how we think about mental functioning.  Instead of regarding large portions of the American public as suffering from deficit, disease, or dysfunction in their mental processing, neurodiversity suggests that we instead speak about differences in cognitive functioning.  Just as we talk about differences in bio-diversity and cultural diversity, we need to start using the same kind of thinking in talking about brain differences.  We don’t pathologize a calla lily for not having petals (e.g. petal deficit disorder), nor do we diagnose an individual with brown skin as suffering from a “pigmentation dysfunction.”  Similarly, we ought not to pathologize individuals who have different ways of thinking, relating, attending, and learning.

 

    The word neurodiversity was coined in the late 1990’s by two individuals: journalist Harvey Blume, and autism advocate Judy Singer.  Blume wrote in the September 1, 1998 issue of The Atlantic:  “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.”  Singer in a 1999 book chapter titled:  “Why Can’t You Be Normal For Once in Your Life?” observed:  “For me, the key significance of the ‘Autistic Spectrum’ lies in its call for and anticipation of a politics of Neurological Diversity, or what I want to call ‘Neurodiversity.’  The ‘Neurologically Different’ represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability.”  The Wikepedia defines neurodiversity as "...an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation."  The online Double-Tongued Dictionary characterizes neurodiversity as:  "the whole of human mental or psychological neurological structures or behaviors, seen as not necessarily problematic, but as alternate, acceptable forms of human biology."

 

    By using the concept of neurodiversity to account for individual neurological differences, we create a discourse whereby labeled people may be seen in terms of their strengths as well as their weaknesses.  Dyslexics, for example, can be seen in terms of their visual thinking ability and entrepreneurial strengths.  People with ADHD can be regarded as possessing a penchant for novel learning situations.. Individuals along the autistic spectrum can be looked at in terms of their facility with systems such computer programming or mathematical computation.  Those with bipolar disorder can be appreciated for their creative pursuits in the arts.  While proponents of the concept of neurodiversity do not shirk from the realization that people with dyslexia, ADHD, autism, bipolar disorder, and other psychiatric conditions, often suffer great hardships, and that those hardships require a lot of hard work to overcome, they realize that until an individual’s strengths have been recognized, celebrated, and worked with, nothing substantial can be accomplished with regard to their difficulties.

 

The potential is great for the neurodiversity movement to create significant social transformation.  Already, for example, there are software firms that have recognized the special programming gifts of certain people with Asperger’s syndrome and others on the autistic spectrum, and have hired significant numbers of them to improve their productivity.  Similarly, more people are understanding that ADHD brings with it special abilities as well as difficulties, and that appropriate career selection can be an important part of determining whether one will be successful or unsuccessful in a particular job. It is hoped that the concept of neurodiversity will help combat “abelism” or the belief that people who are “abnormal” should be discriminated against, condescended to, and ultimately kept out of the basic affairs of society.  Neurodiversity brings with it a sense of hope, that all individuals, regardless of how they read, think, feel, socialize, or attend, will be recognized for their gifts, and accorded the same rights and privileges as any human being. 

---

Harvey Blume, “Neurodiversity,”  The Atlantic, September 30, 1998, p. .

Judy Singer, “Why Can’t You Be Normal for Once in Your Life,” in Mairian Corker and Sally French (eds), Disability Discourse, Buckingham, England:  Open University Press, 1999, p. 64.

   

Interview with Neurodiversity Advocate Kassiane

A recent interview on the blog Technoccult with neurodiversity advocate Kassiane (she didn't wish to give her last name), highlighted some key points about neurodiversity.  In defining neurodiversity, she made an important distinction between the word and the movement, explaining:  "Neurodiversity, the word, simply means the whole variety of different brain wirings people have…from the different kinds of normal to the different kinds of not so normal. Then there’s Neurodiversity, the movement which is the shocking idea that people with non standard wiring are human and deserve to be treated as such without being “fixed” first." Also significant was her emphasis on making the neurodiversity movement inclusive: "Autistic/Asperger people tend to make up the base of the movement, because we latch onto things so well, but we’re really inclusive…ADHD, learning disabilities, mental health issues, cognitive conditions like Down Syndrome, epilepsy, migraines, neurotypical allies, Not Diagnosed Just Weird…we’re accepting of pretty much everyone."  I thought it was interesting that she included "neurotypical allies," as part of the movement.  This makes sense, given the fact that the neurodiversity movement needs all the friends it can get to have a loud enough voice in the marketplace of ideas.

Interview with Temple Grandin on the New HBO Biopic Based on Her Life

A new interview with autistic cattle expert Temple Grandin, the subject of a new biopic on HBO, reveals her own reactions while on the set of the movie.  “I was very involved in the cattle parts of the movie to make sure that was all accurate,” Grandin said. “They bought 32 head of nice Angus feeder calves for the movie. They bought really nice Angus heifers. They had a guy train them so they wouldn’t freak out on the set.”  She observed people working on the set and speculated that many of them probably had Aspergers syndrome. “Down on the movie site there were plenty of Asperger’s doing special effects and stuff like that. That’s where your Asperger types end up,” she said. “Geeks, nerds and Asperger’s, same thing. People on the high end of the spectrum tend to be specialist thinkers. Good in one subject at school, terrible at something else. You wouldn’t even have a phone to talk on if you didn’t have geeks and nerds. They’re socially awkward and are more interested in things.”  The HBO movie premieres on February 6.

Autistic Individuals Show Strengths in Embedded Figures Task

While autistic individuals are known to suffer from deficits in social communication, it is less often recognized that they possess specific strengths in other areas.  One strength relates to their ability to see details.  In fact, they can pick out details in a more complex visual design better than so-called "neuro-typical (e.g. "normal") people (see examples at left).  In studies of the Embedded Figures Task, people with autism (and "normal" males) are faster and perform better than control subjects. In a sense, one can say that they have difficulty seeing the forest for the trees, but they are much better than average at seeing individual trees in the forest. 

Temple Grandin and the "Squeeze Machine"

Temple Grandin is probably the most famous autistic person living today.  Her life will be chronicled on an HBO special starting in February, 2010.  Among her many achievements is the development of a "squeeze machine."  Because of her autism, she resists the touch of others and doesn't like to be hugged.  But she craves the feeling of being held.  When she was eighteen, during a summer vacation, she saw a herd of cattle being passed through a squeeze chute (a mechanism used to keep cattle still while a veterinarian gives them their antibiotic shots).  "Watching those cattle calm down, I knew I needed a squeeze chute of my own,"  she wrote in her book Animals in Translation. When she returned home from vacation, she recruited a teacher at her high school to help her build her own squeeze chute. "I bought my own air compressor, and I used plywood boards for the V.  It worked beautifully.  Whenever I put myself inside my squeeze machine, I felt calmer. I still use it today." Grandin actually provides detailed instructions for building her "squeeze machine" on her website. It is also available ready-made from the Therafin Corporation.

Claire Danes to Play Autistic Expert on HBO

Starting on Feburary 6, 2010, HBO will lauch a new biopic starring Golden Globe award winner Claire Danes, based on the life of Temple Grandin, designer of livestock machinery, best-selling author, and autistic individual.  Grandin has punctured the stereotype of autism as a disorder locking a person into isolation from the rest of the world.  Instead, Grandin is articulate, inventive (she has designed roughly one third of the machinery used to manage animals in slaughterhouses around the country), and a strong supporter of neurodiversity, or the idea that autism and other mental disorders should be viewed as part of the natural diversity of the brain. Here is the trailor of the HBO show:

 

AMC Movie Series Provides Autism-Friendly Environment

AMC Entertainment is teaming up with the Autism Society to create movie experiences on a monthly basis that are autism-friendly.  AMC movie auditoriums will bring the lights up and turn the sound down to accommodate those who are sensitive to sensory input.  There are no previews or advertisements, and families are allowed to bring in gluten-free, casein-free snacks.  Also, audience members are welcome to get up and dance, walk, shout, or sing.  For a list (and map)  of movie theaters cooperating in these Sensory Friendly Films, go to the website of the Autism Society.  

UC Davis Researchers Find California Autism Clusters, Los Angeles Times

"UC Davis researchers searching for autism clusters in hopes of finding an environmental cause for the disorder have identified 10 clusters around the state, but the source of the clusters is not exactly what they expected. The clusters, including five in metropolitan Los Angeles and one in San Diego, are centered on regional developmental services centers in areas with highly educated parents, primarily Caucasians, with high incomes. In short, what they found were clusters of increased diagnostic rates for autism. In one respect, the results were not surprising because it has long been known that high-income, highly educated white parents are more likely to have their children diagnosed with autism and more likely to have them diagnosed at an early age."  Read the entire article.

via latimesblogs.latimes.com

My Note: Another great example of how disabilities intertwine with social factors like race, education, gender etc.

Trying to Figure Out the Neurodiversity Movement

Here's a post on neurodiversity from the blog Life as the Mother of 4 that  I'd like to share with my readers. 

Wednesday, December 30, 2009

The Great Divide: Trying to figure out the Neurodiversity Movement

Thomas Armstrong in his essay Special Education and the Concept of Neurodiversity states that the “basic premise [of neurodiversity] is that atypical neurological wiring is part of the normal spectrum of human differences and is to be tolerated and respected like any other human difference such as race, gender, sexual preference, or cultural background.”

He goes on to say, “Consider the issue of inclusion in education. Regular classroom teachers are far more likely to want a "rare and beautiful flower" or "an interesting and strange orchid" included in their classroom than a "broken" or "damaged" child. The use of ecological metaphors suggests an approach to teaching as well. Individual species of flowers have specific environmental needs regarding sun, water, soil conditions, and so forth. Similarly, neurodiverse children will be seen as having their own differing ecological thriving factors, and it will be a key role for a neurodiversity specialist to understand each child's unique needs for optimal growth. The goal will not be to try and "cure" "fix" "repair" "remediate" or even "ameliorate" a child's "disability." In this old model, such kids are made either to approximate the norm (especially for national accountability tests), or helped to cope with their disabilities as best they can (the phrase "she can learn to have a successful and productive life despite her disability" comes to mind here).”

Computer Firm in Denmark Sees Autism As An Asset

A software company in Denmark has created a positive reputation in the industry by hiring people with autistic spectrum disorders because of their special skills.  Seventy-five  percent of the workers at Specialisterne have autism and related conditions.  They specialize in testing computer software and spotting "bugs" that software developers might have missed.  It turns out that their excellent computer skills, their tendency towards exactitude, and their aptitude for intense concentration on highly detailed systems, are all tailor-made for this job.  Most software firms are good at innovation and problem-solving, but they often come up short when actually testing their products for bugs.  This is where Specialisterne (the word means "the specialists") comes in.  Founded in 2004 by entrepreneur Thornkil Sonne, Specialisterne fills in a much needed gap in the computer industry.  Sonne notes, "My staff are motivated all the time.  Our fault rate was 0.5 percent, compared with five percent from other testers.  That's an improvement by a factor of 10, which is why we can charge market rates.  This is not cheap labour and it's not occupational thearpy.  We simply do a better job."   For additional information about this firm, see a recent MSNBC story, an article in the Independent(United Kingdom),a case study from Harvard Business School, and the Specialiststerne web site.

Obama Names Neurodiversity Advocate to Key Governmental Post

A White House press release dated December 16, 2009, announced that a prominent neurodiversity advocate, Ari Ne'eman, has been named to a key governmental post.  Obama has named Ne'eman to the National Council on Disability, which is an independent federal agency making recommendations to the president and Congress on issues affecting 54 million Americans with disabilities.  Ne'eman is the founding president of the Autistic Self-Advocacy Network, Vice Chairman of the New Jersey Adults with Autism, and a board member of TASH and the Autism National Committee.  He himself has been diagnosed with Asperger's Syndrome.  Earlier this year, Ne'eman was featured in a Newsweek article where he argued that autism is both a disability and a different way of being, and that neurodiversity is a concept that should be accepted by society.   He was also featured in a Good Morning America segment advocating for the rights of people on the autistic spectrum (below). 

 

Autistic Children Score High on Raven's Intelligence Test

Intelligence tests have often been used to differentiate "high functioning" from "low functioning" individuals with autism.  But a recent study published in the journal Psychological Science suggests that "low functioning" children with autism may in fact score much higher if an alternative intelligence test--the Raven's Progressive Matrices-- is used instead of the more conventional Wechsler Intelligence Scale for Children (WISC).  This test (see image on left for sample item) assesses abstract reasoning. The scores on the Raven's were on average 30% higher, and in some cases more than 70% higher than their scores on the WISC.  The Raven's Progressive Matrices is considered the most complex single test of intelligence in the scientific literature. These new findings suggest that many autistic children who have thus far been labeled "mentally retarded," may now be considered of average or above average intelligence, and thus be seen in terms of their strengths as well as their difficulties.