Meet Judy Singer aNeuroDiversity Pioneer
An Interview with the Australian Sociologist who coined the term ‘Neurodiversity’
Many of us would concur that the term Neurodiversity is representative of the fact that differences in neurology should be recognized and respected as a social category, similar to ethnicity, socioeconomic class, sexual orientation, gender, or disability. But most don’t know that Judy Singer, an Australian sociologist, first used the term Neurodiversity in her sociology honors thesis in 1996-1998 (and formally presented the paper in 1998). US writer Harvey Blume, with whom Singer corresponded with about their mutual interest in Autism, further popularized the word in a 1998 issue ofThe Atlantic, stating, “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’s work on autism and neurodiversity became widely known as a result of her chapter “Why Can’t You be Normal for Once in Your Life?” based on her thesis which was published in the UK in 1999 (Disability Discourse, Mairian Corker Ed., Open University Press, February 1, 1999, p 64)).”
The words from the chapter read:
“For me, the key significance of the Autism Spectrum lies in its call for and anticipation of a politics of neurological diversity, or ‘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 rise of neurodiversity takes postmodern fragmentation one step further. Just as the postmodern era sees every once too solid belief melt into air, even our most taken-for granted assumptions: that we all more or less see, feel, touch, hear, smell, and sort information, in more or less the same way, (unless visibly disabled) – are being dissolved.”
With my own longstanding, vocational works on the topic of neurodiversity and autism, I was instinctually driven to discover more about Judy Singer; a name I had heard mention of repeatedly, but a person I did not know much about. A woman who wrote honestly: “Sometimes I don’t want to be yet another Australian woman far from the global cultural hubs and destined ‘to blush unseen and waste my intellect on the desert air’. I’d like to be part of the big conversations with the popularisers of work I helped pioneer.”
From the moment Judy Singer’s kind face popped up on the computer screen in Skype, I was tickled—for there was the woman ahead of her times with the charming Australian dialect, and telling, soulful eyes, who first coined the word Neurodiversity in the mid-1900s. From the get go, I found Singer to be exceedingly transparent, genuine, and inviting. Indeed, a near two hours had passed, before either of us had even realized. During our conversation, for the most, Singer wove in and out of her history, which told of both triumphant and troublesome times.
“When I grew up, we thought children were born blank slates that parents could write on. When my daughter was born, I had to revise my thinking,” Singer shared.
She knew early on that “Aspergers was going to be huge” and recognized there would be a “feeding frenzy by the medical and helping professions who, apart from a few pioneers at that time, thought that any lay person who mentioned a disability they had never heard of was being neurotic. ”
When speaking about herself, and how she fits into the neurodiverse tapestry, Singer stated, “I’m not quite disabled and I am not quite mainstream.” Singer clearly recognizes firsthand the daily struggles of the neurodivergent individual, telling in her youth that she suffered from bullying and feelings of exclusion, and had difficulty making eye contact and ‘small talk;’ while adding, she had trouble finding the ability to stand her ground with peers. The difficulties Singer faced in growing up were evident, including battles with obsessive behaviors and extreme emotional attachments. And like many of us who are part of the neurodiverse population, Singer struggled with building a career, and when faced with challenges, tended to give up on things.
I found commonalities within myself when listening to Singer’s tellings, particularly when she expressed how she believes she is highly intuitive, taking in everything when amongst a large group, and how she finds it hard to converse in group settings. Singer is definitely a woman ofadvanced ideas. In the 1990’s, Singer recognized that people with different kinds of minds were oppressed in the same ways women and gay people were, before they had their own movement, and that the neurologically diverse needed a movement of their own.
They just needed a catchy name for it. “But ‘neurological diversity’ was too much of a mouthful to be catchy. That’s when the word Neurodiversity came to me,” Singerexplained.
Even so, Singer struggled in Australia’s Disability Studies movement, which she said lived in the shadow of the American and British movements, and had not at the time theorized autism.
“It was hard enough to be taken seriously claiming to be affected by a disability that almost no-one in Australia had heard of, let alone to be breaking new ground, especially as a woman lacking the dominant neurotypical gift for self-promotion. I just didn’t know to look authoritative. Even today my work is well known overseas yet virtually unknown in Australia. Although as of the publication of Steve Silberman’s Neurotribes, which mentions me, there has been some interest, and I will be speaking at the 2017 Asia Pacific Autism Conference,” Singer said.
As a result of a lack of disability support agencies and systems in the 1990s in Australia, and the deficiencies in others’ understanding of the traits and challenges associated with autism, Singer gave up on any academic ambitions. “In the end, it all got too hard. I was a sole parent with no family other than an Aspergers mother and daughter, and I was struggling to keep our heads above the poverty line. I gave up on the painful uphill struggle for recognition of my work and instead focused on practical local initiatives, like setting up a social club for Sydney’s Aspergers teens,” shared Singer.
Singer’s mother was a traumatized survivor of the Holocaust, who Singer realized had strong Asperger’s traits. Her mother’s experience instilled in Singer the determination to try to make the world a better place. She said that her father, a loving, devoted, happy-go-lucky NT, was gradually hollowed out by his role of carer for a disability which no one had ever heard of. “Not being a thinker,” he died in denial of what Singer kept trying to tell him.
“Why can’t you be normal for once in your life?” was almost a daily expression of frustration in Singer’s family, and became the title of her chapter in the UK Open University Press book, Disability Discourse, which first bought her work to public notice. Yet it was only when Singer had her own child, with traits similar to her mother’s, that Singer realized that there was some kind of hereditary disability in the family, and that her mother had been struggling to be ‘normal’ all along. Singer stated, “This knowledge came too late to save my father. Besides it still hadn’t occurred to the mainstream that Autistic children do grow up, let alone that they can be parents.”
During the interview, when speaking about her grown child, Singer’s eyes lit up, her posture changed, and she seemed to settle into peace and tranquility. Singer shared of her daughter’s absence of social masks and “incredibly, lovely, grateful” presence and passion for performing in musical theater. Even though Singer’sdaughter is in her early 30s, like many autistics, she looks young for her age, and is often asked what high school sheattends. On expanding on her daughter, Singer noted her love of fan fiction, including Harry Potter books and The Hunger Games series, and added she has a “fantastic memory” and is adept at computers. Still, her grown daughter has challenges with speedy cognitive processing, multi-tasking, and social self-promotional skills required to find gainful employment (that matches what she can bring to the job). Despite learning difficulties, her daughter has her own holistic, rather than linear, way of acquiring knowledge; and despite having an outstanding Librarianship diploma, she could only find volunteer library work, and now works part time doing data-entry.
Singer broke into a wide smile when she explained her daughter doesn’t mind the two-hour bus ride to and from her place of work, because it affords her ample time to read. “Business is built around speed and competition and that makes it very hard for those on the autistic spectrum to get jobs,” said Singer on the topic of employmentand autism.
“Too often they (autistics) spend a life doing more and more courses which don’t lead anywhere beyond more volunteering or, at best, low-paid menial tasks that don’t fit their abilities. Disabled people are still ripe for exploitation, doing work they have every right to be paid for”.
Singer’s thoughts on autism and neurodiversity today?
“Back in the 90’s those of us in my online support groups agreed that autism cannot be reduced to a linear ‘spectrum,’ although the word remains useful shorthand. Nor is it caused by a single genetic trait or vaccinations, for example. I preferred to think of it as a group name for diverse clusters of behaviors, that had in common what I called impairments of ‘Social Communication’ in my thesis. The word Neurodiversity was part of my response to the waning authority of psychotherapy, which had given those of us ‘on the spectrum’ so much grief, and to the rise of the ‘stronger medicine’ of neuroscience.”
I saw that if we were going to legitimate our movement, we needed an important-sounding word in the new language of Neuroscience. I have to say that Neurodiversity is really just a new word for a very old idea – a fancy 21st century way of repeating the old adage: “From each according to their ability; and to each according to their need.” This is an ideal to be strived for though it may not always be reached.”
Singer, like her mother, is no doubt a survivor. And many of us owe her a great gratitude for bringing into the forefront a term that empowers millions. As for her own neurodivergent identity at this moment, Singer spoke: “I’m likely somewhere on the autistic spectrum—somewhere between low-functioning, normal ‘underachiever’ (how I was often viewed) and high-functioning, autistic survivor-against-impossible odds.”
Singer J, (1998) Odd People In: The Birth of Community Amongst People on the Autism Spectrum: A personal exploration of a New Social Movement based on Neurological Diversity. An Honours Thesis presented to the Faculty of Humanities and Social Science, the University of Technology, Sydney, 1998.
Singer, J. (1999). Why can’t you be normal for once in your life?: from a “Problem with No Name” to a new category of disability. In Corker, M and French, S (Eds.) Disability Discourse Open University Press UK
Singer, J. (2016) NeuroDiversity: the birth of an idea. Available Kindle Online.
This interview was brought to you by Spectrum Suite. Conducted by founder ofSpectrum Suite,Samantha Craft M.Ed. (aka Marcelle Ciampi). Craft is the senior job recruiter forULTRA Testing, a technology company with a neurodiversity hiring initiative. She is also an autism educator, the author of the blog and bookEveryday Aspergers, former Selection Committee Chair at theANCA World Autism Festivaland active in autism groups locally and globally. She serves as a keynote, guest speaker, workshop presenter, and neurodiversity recruitment specialist. She can be reached ateverydayaspergers@ gmail.com
As for her own neurodivergent identity at this moment, Singer spoke: “I'm likely somewhere on the autistic spectrum—somewhere between low-functioning, normal 'underachiever' (how I was often viewed) and high-functioning, autistic survivor-against-impossible odds.”
The term neurodiversity was coined by sociologist Judy Singer, who is autistic, in 1997. Neurodiversity can be broken down into two categories of people: those who are neurotypical and those who are neurodivergent.
Neurodivergent is a nonmedical term that describes people whose brain develops or works differently for some reason. This means the person has different strengths and struggles from people whose brains develop or work more typically.
Neurodiversity is an approach to education and ability that supports the fact that various neurological conditions are the effect of normal changes and variations in the human genome. ADHD, Autism, Dyspraxia, and Dyslexia all fall within the spectrum of “Neurodiversity” and are all neurodiverse conditions.
Who's neurodiverse and how might they be helpful? Among the traits that would make a person qualify as neurodiverse are autism, dyslexia, color blindness, and left-handedness. Each of these is a persistent, stable, complex, and relatively rare variation, or 'phenotype'.
“Neurotypical” is a term that's used to describe individuals with typical neurological development or functioning. It is not specific to any particular group, including autism spectrum disorder. In other words, it's not used to describe individuals who have autism or other developmental differences.
Neurodiversity isn't the same thing as disability. Though, people who have neurodivergent features may need accommodations at work or school.
The rainbow infinity sign is the symbol for neurodiversity. The full spectrum of colors represents the diversity of the autism spectrum as well as the greater neurodiversity movement.
Autism spectrum disorder and ADHD are related in several ways. ADHD is not on the autism spectrum, but they have some of the same symptoms. And having one of these conditions increases the chances of having the other. Experts have changed the way they think about how autism and ADHD are related.
As there is no official definition of neurodivergent, various people and groups have different ideas of what it is. You absolutely are neurodivergent if you have been diagnosed with a developmental or learning disorder, such as autism, ADHD, dyslexia, or Tourette's syndrome.
Unmasking requires non-autistic people to be more inclusive and welcoming of their neurodivergent peers – whether they are autistic, have ADHD, Tourette's syndrome, dyslexia or anything else. Here are two important ways to be an ally: Communicate as clearly as possible and avoid turns of phrase.
PTSD and C-PTSD are now considered by many to be within the umbrella of neurodivergence, but fall under the category of acquired neurodivergence.
The most obvious way to distinguish the examples I have given so far would be to use “neurodiversity” to refer to all inborn variation, and “mental disorder” to refer to those psychiatric disabilities caused by hostile environments. However, this would run into problems.
BD may be a type of neurodivergence since differences in brain functioning and structure may be a potential cause of the condition. As a result, a person with bipolar could identify as neurodivergent.
In some ways Williams syndrome is the opposite of autism. For example, people with Williams syndrome love to talk and tell stories, whereas those with autism usually have language delay and little imagination. Many people with Williams syndrome draw disjointed pictures, some with autism draw pictures in perfect detail.
Between 30% and 40% of the population are thought to be neurodiverse. The remaining majority are neurotypical.
But the definition has since expanded to include other conditions in advocacy movements and social justice circles. “With this definition, anxiety can be considered a form of neurodivergence, although it may not be as commonly recognized as ADHD, autism, or trauma,” she says.
What are the differences between an ADHD brain and a neurotypical brain. Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental condition that causes differences in the brain related to attention, behavior, and activity levels, including impulsivity and hyperactivity.
Giftedness is a form of neurodiversity; the pathways leading to it are enormously variable, and so are children's resulting learning needs.
Hyperlexia is advanced and unexpected reading skills and abilities in children way beyond their chronological age. It is a fairly recently named condition (1967) although earlier descriptions of precocious reading do exist.
Several "recognized" types of Neurodivergence, include autism, Asperger's syndrome, dyslexia, dyscalculia, epilepsy, hyperlexia, Dyspraxia, ADHD, obsessive-compulsive disorder (OCD), and Tourette syndrome (TS).
ADHD, Autism, Dyspraxia, Dyslexia, Dyscalculia, Dysgraphia, and Tourette's syndrome are all examples of neurodiverse conditions. They're diagnostic labels used to explain the diverse ways of thinking, learning, processing and behaving. As with all people, we each have our talents and challenges.
Butterfly. The butterfly symbol is one that signifies change and represents the diversity of people on the autism spectrum. It also symbolizes the full lives of the autistic community, and the beauty of the differences of autistic people.
In general, these designations are meant to bring awareness to ”causes.” You will see a lot of blue in April as blue is the color of autism spectrum disorder (ASD) awareness.
The rainbow butterfly symbol, based on the "rainbow infinity" neurodiversity symbol, grew from conversations on an ADHD Facebook group about what signs and symbols people with ADHD felt best represented them.
Every person living with autism is unique; some may struggle with empathy while others may feel completely overwhelmed by other people's feelings, and then there is everyone in between. It seems that autistic expression of empathy may be atypical.
The symptoms to look out for in children for suspected autism are: Delayed milestones. A socially awkward child. The child who has trouble with verbal and nonverbal communication.
- forcing or faking eye contact during conversations.
- imitating smiles and other facial expressions.
- mimicking gestures.
- hiding or minimizing personal interests.
- developing a repertoire of rehearsed responses to questions.
This type of audio creates the sensation that sounds are moving around you in space. While 8D audio can be stimulating to anyone, TikTokers are claiming that neurodivergent folks may experience it differently than people with neurotypical brains.
ADHD masking may also be called "camouflaging." This is when someone with ADHD tries to cover up their symptoms by copying the behaviors of people who don't have it. ADHD masking may be a way for some people with ADHD to fit in socially, avoid being stigmatized, or feel more accepted.
If there are sensory sensations that are overwhelming, then another spoon is used up in regulating and keeping calm. If they have to work in a group more than one spoon may be needed. Break times are not relaxing, another spoon or two is used up in coping with all the social interaction, noise and lack of structure.
Self-diagnosis is ultimately not helpful since it does not give the person access to professional treatment. An official diagnosis of autism can only be made by a doctor.
Stimming is a normal behavior for people on the spectrum, but watch out for changes. Autistic people might stim in order to reduce anxiety, so an increase in stimming could be a cause for concern. New self-harm behaviors, like head-banging or scratching, could also appear after trauma.
Often, Neurodivergent females have been previously misdiagnosed with mental health conditions, such as Personality Disorders or Eating Disorders21. These females often turn up in adult psychiatric services, where professionals may have little training in recognising or diagnosing Neurodivergent conditions.
Complex post-traumatic stress disorder (complex PTSD, sometimes abbreviated to c-PTSD or CPTSD) is a condition where you experience some symptoms of PTSD along with some additional symptoms, such as: difficulty controlling your emotions. feeling very angry or distrustful towards the world.
A relatively new term, neurodivergent simply means someone who thinks differently from the way the majority (referred to as neurotypical) expect. Neurotypical means the opposite –someone whose brain behaves in the same way as the majority of society.
Misdiagnosis and diagnosis. Doctors sometimes mistakenly diagnose autistic people with bipolar disorder because both conditions share some similar behavioral differences. Overlapping behavioral differences between ASD and bipolar disorder include: elevated or depressed mood.
There is no cure for autism, but experts agree that the best way to manage symptoms and develop independence skills is through ABA therapy. It's important to remember that autism spectrum disorder (ASD) is a complicated condition that presents differently in every individual.
Today, Asperger's syndrome is technically no longer a diagnosis on its own. It is now part of a broader category called autism spectrum disorder (ASD). This group of related disorders shares some symptoms. Even so, lots of people still use the term Asperger's.
To recap however, the word was first used in the context of disability studies by Judy Singer (Singer, Why Can't You Be Normal For Once in Your Life?, 1999) in a paper entitled “why can't you be normal for once” and it contained the notion that neurology, in the sense of all those axons and neurones that interconnect ...
"...a concept where neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others."
Neurodiversity as identity
For psychiatric disorders, the criteria are based on standards established in the Diagnostic and Statistical Manual (DSM). of autism, ADHD or a learning disorder. A disorder characterized by difficulty in learning primary skills such as reading, writing and arithmetic.
Judy Singer is a sociologist, author and international speaker. She is noted for the coinage of the word “Neurodiversity” in a thesis published at the University of Technology, Sydney in 1998.