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 its 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:
“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