By Debra Muzikar
Last year The Art of Autism posted a blog on Person First Language (PFL) which proved to be educational for me and I hope for others. This year I’m tackling the word neurodiversity, which is much more complex. I didn’t know some people object to the word until I moderated a neurodiversity panel last weekend at the USC IGM Art Gallery.
The first time I became aware of the word neurodiversity was in 2011 when my son Kevin participated in a Neurodiversity Art Exhibit at the Museum of Modern Art Kiev in the Ukraine curated by KJ Baysa, M.D. who now serves on the Art of Autism advisory board. I thought at the time it was a cool word and described not only Kevin, but Kurt (my husband), myself and many others I knew.
A brief history
Judy Singer, Autistic, coined the term in a not well-read thesis in Australia in 1988. Harvey Blume popularized the word in a 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.” The next year Judy Singer wrote “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.” Dr. Thomas Armstrong, author of many books on on the topic writes neurodiversity “includes an exploration of what have thus far been considered mental disorders of neurological origin but that may instead represent alternative forms of natural human difference.”
Nick Walker has written a clear definition of neurodiversity terms in a blog on his website neurocosmopolitanism.com. He says “I’d love if everyone who wanted to weigh in on conversations about neurodiversity first took the time to learn the difference between neurodiversity (which is NOT a ‘perspective’ or ‘viewpoint,’ but a biological characteristic of the human species, of which autism is just one manifestation), the neurodiversity paradigm (which IS a perspective), and the neurodiversity movement (a social movement that promotes the neurodiversity paradigm). Or the difference between neurodiversity and neurodivergence. Or the difference between neurodiverse and neurodivergent (the human species is neurodiverse; individuals whose neurology differs substantially from dominant norms are neurodivergent).”
I didn’t realize neurodiversity was a controversial word until in a recent conversation a mom informed me it was a loaded word. It seems the reason why some people object to the word is they are confusing the neurodiversity paradigm and the neurodiveristy movement with the biological fact of neurodiversity.
Daniel Obejas from the Autistic Self Advocacy Network gave a definition for the neurodiversity panel last weekend.
Why do we need these terms at all?
“I keep encountering privilege-denying neurotypical people who say things along the lines of, ‘Why do we need labels like ‘autistic’ and ‘neurodivergent’? Everyone is unique in their own special way!’ Dear people who say things like this: stop it. Because you sound exactly like those privilege-denying white people who say ‘I don’t see color.'” Nick Walker
“Diagnosed at fifty as on the spectrum, I have two sons on the spectrum a sister and two cousins in England I just recently found all on the spectrum. It’s hard to keep up with a culture like autism [as it] constantly redefines itself as what is politically correct. I guess I am at the stage where it doesn’t really matter, who or how you define yourself or words you use, as much as it is tone and intent is respectful how you use the words when addressing a person… and as long as autistic doesn’t become a slur.” Janet Sebelius
“People get so wound up over trivial things! Don’t like the word? Don’t use it…Problem solved.” Marilyn Sheehan
Civil rights and the Neurodiversity Movement
“Typical people can be very cavalier about this topic, when they do not see it as a part of their daily world. If you were an Autistic person who was constantly talked down to as an adult and made to feel that you didn’t have any right to ideas about what you would like for your own life, while others make national plans for you without you, you might see it as more than just another annoying way for people to ‘divide.’ … We all need supports but, we do not need to always assume typical ways are the ‘right way’ because, they often are not.” Kelly Green, parent
“Until people recognize that the diagnosis was created for the convenience of others rather than the support of the recipient, anything that questions the medical model will present a threat … Furthermore, without this recognition, it must seem outrageously disrespectful for someone diagnosed to express anything other than gratitude for public policy that affects them and for the traditional societal perceptions of who they are.” Ed Ised, Autistic
“This is more an issue of the latest iteration of the government to treat a new group of people like garbage because they don’t fit the default idea of human/homo-sapien … It’s not so much a word; its more the meaning behind the word.” Andy Dreisewerd, Autistic
“I think we need labels-but I also think much of what happens in the neurodiversity movement appears to be preaching to the choir-because of the pain and marginalization of the neurodiverse. But does that mean that neurodiversity has to function as a separatist movement-in any civil rights movement? This is part of the story, but the goal should be real and meaningful inclusion. And in terms of our neurology-and diagnosis, the co-morbidities of the diagnosis are what many times create the exclusion in the dominant culture, not the neurology.” Aaron Feinstein
“To criticize neurodiversity for ‘highlighting differences’ is like criticizing feminism for being ‘sexist’ because it points out how women are oppressed. It’s important to understand the history of the development of the concept, which I write about in-depth in a book that’s going to be published in August. The word neurodiversity was coined at a time when autism, ADHD, dyslexia, and other cognitive variations were ONLY defined as inferior and diseased.” Steve Silberman
Eugenics agendas cause reactions of fear
My recent blog about why many people are upset with the nonprofit Autism Speaks addressed eugenics and the concern of ridding people of their neurodiversities. The percentage of neurodiverse in the criminal justice system has been on the rise. (Human Rights Watch report about the cruel treatment of people with mental disabilities in prisons, May 12, 2015).
“It seems that people in the ASD community get very concerned about the potential for society to want to eliminate neurodiversity, so I have seen a lot of reactivity around that fear. In that sense I can get some understanding about their reactions, but I think we have to educate society about the incredible value of neurodiversity.” Martha Somerville, Aspie, therapist
Antagonism between Neurodiversity self-advocates and parents
“The ND crowd goes a little crazy on parents trying to help their kids with diet and other things. They think they [the parents] are trying to fix their autism – not trying to work on their overall health. It’s the vocal ones [neurodiversity movement advocates] who make them upset because they get as emotional as those discussing vaccines. That’s what the issue is. I don’t want to have emotional arguments with anyone. I do enjoy a healthy debate knowing full well my goal isn’t to convince – it’s to present what I believe.” Laureen Forman, parent
Laureen goes on to state she has no problem with the word neurodiversity but has problems with emotional arguments and debates about interventions she is using to help her son.
“Not all those who support ND are in the ‘crowd’. Many have no problem with diets and supports as long as it’s not abusive or punitive.” Stefanie Tihanyi, Autistic
“There is a tendency for people to associate words with the people they hear use the word. Unfortunately there is a lot of animosity among some autism parents and some adult self advocates. The animosity comes from each side not giving the other the benefit of the doubt. Self advocates should be more understanding of parents who have normal fears for their children. Parents should face the certainty their children will become adults who will still need a sense of belonging and to feel good about who we are. Neurodiversity is good when it brings people together and empowers. It’s not so good when becomes a rallying battle cry.” Eric Wagers
Dani Bowman of Powerlight Studios made a video about the animosity between parents and self-advocates:
Functioning level
“It’s a bad [word] for us who are not super high functioning like the self DX group or ones doing so well they need little to no help.” Stefanie Sacks, Autistic
“I, like most adult autistics, don’t like functioning labels. They tend to be about speaking abilities more than anything. Many of us autistic adults get told to shut up when we try to talk about what it feels like to be autistic, or when we try to join and help autism charities like Autism Speaks. Many people, most parents, in those groups often assume that the autistic commenters must be ‘high functioning,’ meaning ‘can talk,’ but often the autistic commenter communicates via AAC, including typing… The other issue is that even for those of us who can ‘speak,’ and who are hyperlexic with impressive spoken vocabularies, it doesn’t mean what comes out of our mouth is what we mean, or that we are processing spoken conversation very well. Many of us prefer to type to communicate. … The problem is, that most NTs won’t honor that, and read way too much into my texts that isn’t there. In typing, I am most myself, with no filters. I can process. But am I ‘higher’ or ‘lower’ than a ‘non-verbal’ person?” Annette Sugden, Autistic
Negative spin comes from anti-vaccine and pro-cure communities
“The negative spin on the word comes almost entirely from the anti-vaccine and pro-cure communities, who claim that the concept only benefits ‘high-functioning’ people, which is incorrect. The people speaking against it are usually unaware of the fact that the neurodiversity movement from day one has sought to frame autism as a disability, rather than as a disease or as purely a gift. Framing autism as a disability that deserves support and reasonable accommodations (rather than, say, an epidemic caused by vaccines) would benefit everyone, including people with profound intellectual disability.” Steve Silberman, author of future book Neuro-Tribes, The Legacy of Autism and the Future of Neurodiversity
Objection to the the world Neurotypical (NT)
“These terms do seem to be colored oftentimes by the emotional color put behind them. Especially the term neurotypical, which is the one I have the most issues within the neurodiversity paradigm. And this is because cultural ideas of what is considered normal are changing at an incredibly rapid rate.” Aaron Feinstein
We all are diverse
“To me this has no negative connotation, at all! Not good not bad just brilliantly different! As in we all think in different ways which we do. How could that be bad?” Sharon Fuentes, parent
“I believe the intention of neurodiversity is awesome. My only additional thought is that ‘diverse’ doesn’t take it far enough. We are ‘Neuro-UNIQUE’….and ‘Neuro-Complex’, … ‘Words’ are really containers for energy, meaning and intention.” Kathleen Tehrani, Founder Autism Brainstorm
“Our Western world likes to compartmentalize putting everything into simplistic categories. Now they have such terms as neurotypical and neurodiverse separating the entire human population into two categories. I say ‘neurotypical’ is a diversity as well.” Kurt Muzikar, Aspie, from upcoming book From Bozo to Bosons.
“Why do people get hung up on some words? when I hear the word neurodiversity – I do NOT exclude or separate those with neurological impairments from so-called typical people … Let’s break it down: ‘neuro’ derived from the word neurology, or broken down to ‘neural-pathways’ is defined as ‘how the human mind creates new neural pathways (in the) brain through neuroplasticity’. This is not exclusive to some brains; those brains; your brain or mine. this is ALL brains. Now let’s break down ‘diversity’, a noun, is defined as ‘the state of being diverse; variety.’ With that, neurodiversity to me describes every human on the planet – and alas – finally put us all in the same boat. I think of neuro-diverse brings us all together and does not separate on single living human.” Keri Bowers, parent
Neurodiversity is helping us evolve as a species
“The brain is remarkably diverse in its reactions to the many forces that shape its structure and function. Whether it is genetic influences, certain stimuli, environment, brain damage from any source, education, psychological trauma, whatever….our brains are remarkably plastic, in that they can re-route connections and circumvent some challenges so well. It is the neurodiversity that helps us as a species…to evolve and to learn new things.” Martha Somerville
Need to get over ourselves
“Everything offends the Autism Community. For all the stuff we deal with on a daily basis you’d think we’d have thicker skin.” Jane Tipton, parent
Human societies are hierarchies – pyramids of who counts and who doesn’t; who has power, who does not; who gets to use violence, who does not; who gets to lie, who does not. Unfortunately, recent U.S. history shows that divide and conquer is the strategy used by those on top to keep people fighting over meager rights and status at the bottom layers of the pyramid. They do this by LABELING people – the more labels, the more people who DON”T COUNT and the fewer the number of people who dictate to the rest of us. It’s the 99% – 1% thing, but social. Arguing over and adopting labels? They win. It’s time to stop feeding power at the top and instead define who we are by strengths, special skills, and unique perspectives.
“Because you sound exactly like those privilege-denying white people who say ‘I don’t see color.’”
Whatever the truth about neurodiversity, this kind of sentiment does not help. Every thing about the world people don’t agree with isn’t true just because there is racism and people are very resistant to recognizing it and therefore one can draw a parallel.
Privilege-denying white people are standing on the back of literally hundreds of years of brutally building entire societies on the backs of minorities, and most especially blacks. While there is no doubt a certain amount of what one might call prejudice against people who aren’t neurotypical throughout history, there is simply nothing parallel to the middle passage, to slavery in the US South, to lynchings, to being placed in real economic and social ghettos without hope of escape, and so on. That is what privilege-denying white people are overlooking when they claim not to see color.
You deny the power and specificity of racial hatred (and gender hatred) when you make other social causes parallel to it, especially when those causes are ones that have not even really been recognized until recently.
There are lots of kinds of social prejudice, but there is no argument I can fathom that can possibly argue that *all* people on the spectrum, and I am one, which few people even notice, let alone stigmatize me for, as a group, have been subjected to the kind of brutality (of every sort) to which *all* blacks in the US, as a group, have been and were subjected.
Even today, if one is black, one can be expected to be routinely stopped and harassed by the police for all kinds of arbitrary reasons, even if one has never committed a crime of any sort, is an upstanding member of the community, and so on. Are you actually claiming that this is true of people on the spectrum? In my experience, it simply is not.
Well written.
Although “autism” per se is only a recently-recognized category, there is a long history of horrific abuse of autistic and other developmentally disabled people — or at least those who can’t pass as NT — regardless of what label was used in a given era.
And, yes, in various parts of the U.S.A., my autistic boyfriend, who is white, has often been stopped and harassed by cops merely for walking in places where most people have cars. Apparently many cops, in many places, regard anyone with non-standard body language as being a “suspicious character.” My boyfriend now lives with me in NYC, which is the only place he has ever lived where he has NOT been routinely harassed by cops and other people. Yet, even here, he is terrified to give up smoking, on the grounds that, without a cigarette, he will be regarded by cops and others as a person with no legitimate reason for walking out-of-doors.
The persecution of developmentally disabled people is not the same thing as racism, insofar as it is not a result of colonialism and enslavement. Nevertheless, there are indeed many parallels in terms of how people are actually treated in today’s world.
yes, the word you used which is key is ‘in my experience this is not’ and that is good. in some peoples experiences they have been pulled by the police and the police have not had the training to even know how to recognise those on the spectrum not that obvious to the untrained eye…so education and asking questions, being aware that is a possibility in our society today is a must. I know of quite a few people with autism that have been stopped or spotted by the police and arrested, initially because they were behaving ‘suspiciously’ This of course happens to lots of people not just autistics. The difference is learning and understanding that some of us process information differently which will , of course affect the way in which we respond to a question or an order…which if you do not understand as a genuine condition and not being defiant or confrontational can cause problems..words are words…what we do with hem is entirely up to the individual. if we lived without the need for labels at all we would all be people who are different from each other, full stop…seems radical but I know it would make the world and us in it a much peaceful and stress free place..evolution is a real thing which continues forever and so it makes sense that different brains will be born as we have evolved previously in history, we are seeing this happen before our eyes, and we are adjusting to it, some easier than others. I am a mum to a non verbal 10 year old boy and have experienced ignorance, anger, fear, love, support, I personally have been wretched and scared, frustrated and scared about my sons future to having most days where I embrace him completely and by doing this our lives have become easier and more joyous..yes there are struggles, and patience on both my sons and my side are paramount….so I learn from as many people with autism as I can, and parents, this is about sharing our experiences without judgement by sharing we can help and support each other and surely that is what we need to really create a more understanding outcome.
interesting, thanks for the blog. As a parent I use the word autism because it is a quick way to help strangers have a little understanding when my son acts in a way that is markedly different from them. But, then I tend to use the words “high functioning” because often an untrained eye cannot see his issues until he is very upset, so I don’t want strangers to not believe me. My son, though, does not like to be described as having autism or as being autistic. He describes his difficulties as his “things”, (as in, “that is just my thing”) which, I guess is correct in the sense that they are his own issues and nobody elses.
“We all are diverse” I find, is used by the “just get over it” crowd. While the phrase is technically true, when used with derision, it becomes a weapon. Diversity portends to be inclusive but needs to include acceptance as a basic tenet. The problem is that “NTs” simply cannot, for the most part, comprehend the effect of ASD on another individual.
As a Feminist Autistic PERSON, I’m with Steve Silberman: the word can be hijacked by haters, but we can and should reclaim it as a really good fit for reality as well as progressive, inclusive ideals.
Thanks for this thoughtful and comprehensive post!
Love,
Full Spectrum Mama
Excellent! I’m the husband and dad of two AS people, a teacher of children on the AS for over twenty years and now I have the opportunity to help design a radical curriculum which is being considered by the British Labour Party.
I’m desperate to produce an empowering, non divisive, collaborative way of working not just with AS but ADD, Dyslexia, ADHD and all those other marginalised ways of thinking. I’ve had experience of the ways this can work (my classroom where dancing was just as valid a means of communication as writing, or when conversation was drumming as well as speaking) I’m passionate about all the missed opportunities we have had for growth because what were talents, the education paradigm saw as problems os worse still, disabilities. If anyone has any comments, stories, thoughts that may help me persuade other more “traditional” thinkers. Please let me know.
I always wonder how people in the Neurodiverse Movement feel when they hear about true cures of conditions like severe ADHD, Asbergers Syn., Autism, etc. And there are many, many documented cures. See Reichenberg-Ullman’s books “Prozac Free” and “A Drug-Free Approach to Aperger Syndrome and Autism” for example. Are these cures seen as failures because they are no longer neurodiverse? I am not denying neurodiversity; that would be like denying hair color diversity. But we have to consider what the healthy spectrum is. I dont think anyone has been born with chartreuse hair. What is the healthy spectrum for neurodiversity?
There is documentation now from the whistleblower, Dr Thompson, that he participated in the CDC’s coverup of the autism damage caused by the MMR vaccine. I think it is time for the Neurodiverse Movement to reconsider what is the line between neurodiversity and pathology.
We actually need more labels in the neuro-atypical community-not fewer. The reason is that people are then going to look down upon high functioning people in a worse manner.
Great article – loved it. Just one little amendment, I believe it’s Singer’s 1998 thesis (1996-1998), an important distinction as Harry Blume is co-credited with coining the term as he published his article around the same time. Please keep writing articles like this, it’s incredibly useful.
The problem with ASD is more epistemological than neurological. With over 7-billion human brains on the planet there must be an infinite amount of diversity, some of which–when measured on a bell-curve using certain criterion which are not necessarily strictly scientific, but statistical, being based on arbitrary measurements of various kinds of functioning in specific situations–is simply a variation on the way brains function. This would naturally include areas of excessive development, and areas of weakness relative to an hypothetical control group. The problem with labels–even after they are re-appropriated and used as a way of defining a group of like-minded people in an empowering way–is that they quickly ossify into stigmatizing demarcations, or forms of essentialist thinking, where criterion for inclusion becomes a source of endless debate. The tendency of Western Culture to Cartesianize existence by constantly inventing new and essentially binary categories and subcategories in which to separate and contain elements of the human experience is that they can be highly stereotyping, and implicitly assume that the underlying social conventions upon which they are based represent an unchanging bedrock of normality against which everything else can be judged. Over 100 years ago those who would now be labeled High functioning, might have simply been called eccentric (a term that implies a matter of degree rather than a separate kind of human); those on the lower end of that bell-curve were often mistakenly thought of as possessing below normal intelligence. Clearly for many on this spectrum (those who are closest to the classical, meaning older definitions of autism) may benefit more from the contemporary nomenclature. However, once a system, or paradigm is in place , it has a tendency to expand until it comes across a barrier, or some sort of newer paradigm. In the case of the Autism Spectrum it seems to have expanded to include more and more varieties of difference, neatly bundled into what would otherwise be arbitrary criterion for inclusion; and has become difficult to define even for those whose careers are based on identifying and defining it. This reflects the new tenor of neuro-reductionism in psychiatry as mush as it reflects the needs of the public school system–an institution that is not in any way a level playing field, but a one size fits all construct–to more carefully delineate between elusive concepts like normal, and everything else. Human consciousness is much too complex for it to be neatly compartmentalized within a set of heuristic guidelines that have been reified into a form of ontological fascism, where people with eccentricities of all kinds are told to own the label and make it their own. However many people do not want to be stamped and label, as such naming causes other to carry old misconceptions into the space provided by these new, yet still reductive containers.