Neurodiversity, as a concept, is in its core based on a positive intention. Delusionality is defined as the being in a state of “Believing something to be true that is clearly not. Someone who is not thinking clearly. Used to describe someone attached to an idea which is obviously false.”. Here I explain why ...
Neurodiversity, as a concept, is in its core based on a positive intention. Delusionality is defined as the being in a state of “Believing something to be true that is clearly not. Someone who is not thinking clearly. Used to describe someone attached to an idea which is obviously false.”. Here I explain why …
The aim was to create a societal, interpretational paradigm-shift towards persons with Neurodevelopmental Disorders (NDDs), such as ADHD/ASD/ID, with the purpose of trying to create a more inclusive, less stigmatising language when talking about the consequences of living with an NDD.
The concept is mostly based on how neurotypicals (NTs) should address and include persons with disorders in societal terms, so as not to make their neurodiverse behavioral traits, the focus of defining the person, and refocus to the concept of “not being different from a NT person – but simply perceiving the world around them differently, than a NT would”.
This definition is completely based on cultural/societal/political correctness norms, completely devoid of acceptance and recognition of what is at the neuroanatomical core at the – WHY – of this discrepancy in perception between NT and NDD persons.
It simply concerns itself about the how persons with NDDs are perceived by NT persons, and solely defined as the neurodiversity movement – perceives – that which an NDD person should feel and experience this, as they themselves would feel and experience it.
As John from the neurodiversity movement says.
“Critics of the neurodiversity movement say it paints autism and certain other diagnoses in a positive light, when in fact they can be incredibly disabling. What that critique misses, is this: autism is a medical diagnosis bestowed by a trained clinician. There is no limit to how severe autistic disability can be. Neurodivergence, on the other hand, is an identity a person adopts. Whether you are clinically diagnosed or you just see traits of autism or ADHD in yourself, you are free to say, “I identify as neurodivergent.” – John Elder Robinson
I agree with John – people are free to “identify” in whatever manner they see fit! What I don’t agree with is, that the neurodiversity movement have taken my genetically based, neurodevelopmental disorder, as hostage in their ideological battle for social equality!
I’m NOT neurodivergent – I’m defective – literally – neuroanatomically and neuropsychologically, based on scientific evidence for this defect in the way my brain physically developed from the time of my conception on!
That a fact of life – for me – and I must live under those circumstances, regardless of whether I like it or not! It’s not my choice, but it is my reality – and I refused to be shamed by those who are afraid to face the truth about their biological defects, just so that they can make themselves feel better about them and those who support their views!
In my view, this is communal narcissism in full effect. By trying to shine the light on themselves, by telling the whole world how awful they treat those who “don’t assume that neurological and behavioral differences are always problems.” as Aiyana Bailin states in her article and continues “there’s nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance.”
She truly believes that I, as a person with Autism, don’t want to socialize because socializing is something which NT persons are excluding me from participating in, when what is causing me not to socialize as much as I’d like to, is based on my – NEUROANATOMICAL – defects in my sensory perception, which causes me to become overstimulated by sound, not people!
She also state, that “Autism and other neurological variations (learning disabilities, ADHD, etc.) may be disabilities, but they are not flaws.” And that “Neurological variations are a vital part of humanity, as much as variations in size, shape, skin color and personality.”
Which just even more obviously display her lack of – scientific insight – since she seems to believe that not being born with the mental capacity to “see in your Mind’s Eye” nor “talk using your Mind’s Voice” is just me being “different” not “flawed”, and that this do not make me disadvantaged from a NT person.
What she does not understand is, that the defects in my brain – physically – is so profound that it completely changes my ability to be “fully human” – since I do not possess the ability to “imagine the future” in my Mind’s Eye – which is what biologists says is THE thing that homo sapiens sapiens are able to do, that no other species on the planet are able to do!
That does not make me “inhuman” or “subhuman”, but it sure does make me – “a flawed human”. It is a part of who I – AM – that dictates what I can – DO – which in turn sets the limits for what I can – EXPECT – from my interactions with NT persons. What it does not do, is limit me in fulfilling my life goals, to the best of – my – abilities, preferably without being stigmatized as “not flawed, just different” – that is a gross undervaluing of my identity, and it’s just as discriminating as demanding a person with Autism to “look you in the eyes”!
And last, but not least, when she demands “that the professional community needs to apologize for decades of mistakenly insisting that autistic people lack emotions or empathy, and for all the harm, both physical and psychological, that has been done to autistic people (and is still being done) because of those errors made by neurotypical observer.” she clearly refer to those who practice the tortures of ABA therapy, and still she do not understand, that what she blame them for doing, is exactly the same as the neurodiversity movement is doing – forcing persons with NDDs to “fit into their category” claiming that it is “for your own good” …
/Peter ‘ADDspeaker’ Vang
To provide you with the opportunity to make up your own mind on Neurodiversity, I’ve included 4 articles below, each presenting a perspective on Neurodiversity, which I used to combine my opinion upon.
I include the objective definition of Neurodiversity from Child Mind Institute, then the opinions of Simon Baron-Cohen, one of the foremost authorities on Autism Spectrum Disorder, from Aiyana Bailin, who is a part of the neurodiversity movement, and lastly from Edmund Sonuga-Barke, and Anita Thapar, who are two of the most respected and published authors on ADHD.
Child Mind Institute
“Neurodiversity” is a popular term that’s used to describe differences in the way people’s brains work. The idea is that there’s no “correct” way for the brain to work. Instead, there is a wide range of ways that people perceive and respond to the world, and these differences are to be embraced and encouraged.
Neurodiversity was coined in the 1990s to fight stigma against people with autism, as well as ADHD and learning disorders like dyslexia. It’s grown into a movement to support people who are neurodivergent — outside of the mainstream in the way their brains work — and to focus on developing their strengths and talents.
The movement acknowledges that autism, ADHD and LDs do cause impairment. That is, they can create obstacles that get in the way of neurodiverse people doing the things they want to do, and treatment should help them reduce symptoms that interfere with their goals.
But supporters argue that some of the things identified as impairment are caused by problems in neurodiverse people’s environments — from kids’ birthday parties to school classrooms to adult workplaces, which can be made more comfortable for them. And they are often excluded from things by neurotypical people who misunderstand them.
Lately neurodiversity has also become an identity sometimes adopted by teenagers who are struggling socially. The concept gives them a brain-based explanation for their difficulties: “I’m like this because my brain works this way.” And it can help them feel connected to others who identify as neurodivergent. Neurodiversity is a term that seems to be everywhere these days. And increasingly, kids and young adults are using it to describe themselves.
But what does it mean to be neurodiverse, and where does the term come from? In short, it means that there are many differences in the way people’s brains work. There’s no “correct” or “incorrect” way. Instead, there is a wide range of ways that people perceive and respond to the world, and these differences should be embraced.
The term neurodiversity was coined in the 1990s to fight stigma and promote acceptance of people with autism. But it also includes other conditions that involve neurological differences, such as ADHD and learning disorders like dyslexia and dyscalculia.
The neurodiversity movement was launched by Judy Singer, an Australian sociologist who is herself on the autism spectrum. Singer saw neurodiversity as a social justice movement, to promote equality of what she called “neurological minorities” — people whose brains work in atypical ways. As she defined them, those minorities included people with autism as well as ADHD and learning differences. Singer felt that these differences should not be viewed as deficits, but rather as normal and potentially valuable variations on the way brains work.
A main goal of the neurodiversity movement is to shine a light on the benefits of this diversity. For example, the creativity that so often goes with learning differences like ADHD and or the hyperfocus and novel perspectives associated with autism.
“Everybody has strengths and everybody has things that they’re working on,” notes Stephanie Lee, PsyD, Director of theand Behavior Disorders Center at the Child Mind Institute. “Instead of thinking of people with autism, as needing to be ‘fixed,’ we put a spotlight on things that they’re good at and help with things that they’re working on. In this approach, focusing on strengths becomes an important part of treatment. “Being a strength-based therapist means that I look at the strengths of the family, and of the individual,” said Dr. Lee. And then I think, ‘How can I take this unique individual’s strengths and use them to breathe life into an evidence-based treatment?’ ” Dr. Lee observes that this treatment approach also emphasizes helping kids work towards their own goals, rather than deciding the goals of treatment for individuals without including them. “If there are symptoms that are making it hard for an individual to reach their goals, that are getting in their way, that’s what we want to work on.”
Proponents of neurodiversity also argue that some of the impairment that affects kids with autism, and LDs is caused by problems in the environment they’re in. For example a rigid school schedule or a loud, bright workplace can make it impossible for them to function well. They are also undermined by the social exclusion that can stem from misunderstanding by neurotypical people. That’s why another focus of the movement is to encourage changes in environments — everything from workplaces to classrooms to kids’ birthday parties — to make them more welcoming and open to those who think, process and learn differently.
Neurodiversity has also evolved from a focus on individuals with a formalof autism, or to include a broader group of people, many of whom self-identify as neurodiverse. Cynthia Martin, PsyD, the Clinical Director of the Autism Center at the Child Mind Institute, describes this shift.
“The term used to be used to describe people who either had a clinicalor were borderline, with symptoms that are near the clinical threshold for a diagnosis” she explains. “More recently, what I’ve seen is broadening to include anybody who identifies with it. People who feel that they think or process outside of the box.”Neurodiversity, she says, has become something many people, especially adolescents, are increasingly comfortable identifying with. For kids around middle-school age who are struggling socially, identifying as neurodiverse can be a way to make sense of what they’re going through.
The concept gives them a brain-based explanation for their difficulties — “Oh, I’m like this because my brain works differently.” It can also help create a sense of community with others who identify as neurodiverse.Some children are now diagnosing themselves with conditions that fall under the umbrella of neurodiversity, seeing a potentialas a way to validate their experiences. “The result is that we’ve been seeing parents come in with their self-referred 11-to-13-year-old who wants to be evaluated for autism,” says Dr. Martin. These children may or may not end up with autism diagnoses, but an evaluation is often an important step toward helping them feel better and cope with challenges (more on this below).
Kids aren’t alone in finding comfort in the potentially broad applications of neurodiversity. Dr. Martin reports that parents, too, sometimes use the concept to describe children whose behaviors, especially their emotional extremes, don’t seem to have any other explanation. When kids are very rigid, or react with outbursts or meltdowns that seem out of proportion to the circumstances, frustrated parents are left looking for an explanation. “We have parents who say, ‘Well, my child must be neurodivergent in the way they’re processing information because how could this response be anything else?” she adds. That frequently leads them to seek an autism evaluation, though there are other factors that can lead to extremes in moods.
If a child comes to a parent to say they feel they are neurodivergent, the most supportive response is to be open and empathetic, without judgment, Dr. Martin says. Saying “I’m so happy that you’re talking to me about this” is always a good place to start. Getting an evaluation is an appropriate next step, though it’s helpful not to promise the child that the evaluation will automatically lead to thethey are seeking.
The evaluation will be the start of providing a solution for the issues that are concerning them. What the evaluation should yield is a pretty comprehensive look at what the child is struggling with. And it should identify whether those struggles reach the clinical threshold for a formal— though it not might be thethey are expecting. “Sometimes through the evaluation there is another that a child meets the criteria for,” she says. “There might be social anxiety or a mood disorder. There could be non-verbal disorder. These are all diagnoses that make it difficult for individuals to navigate social relationships, group environments, and often have co-occurring challenges with sensory processing. Sometimes kids don’t meet criteria for a of anything.”But not meeting the criteria for a disorder doesn’t mean the child’s struggles aren’t real, Dr. Martin adds. “I tell them, ‘That doesn’t minimize your experience, so let’s talk about what we can do to support you, or find other answers if necessary.’ ” The end result should be a plan that both parents and child can have confidence in.
Dr. Martin notes that while the movement to use the term “differences” rather than “disorders” has benefits, it’s still crucial to focus on actual when children have serious symptoms. “When kids have a disorder that is significant and will impact them on a daily basis, and will show up at school, will show up in their friendships, will show up in their home life, in their adaptive skills, you do need a view from a medical perspective,” she explains.
The basis for understanding the child’s condition, as well as for getting much-needed supports, therapies and school services. But recognizing neurodiverse people as having differences, rather than deficits, is broadly useful in helping kids fulfill their potential and thrive. “Having the people who you are interacting with — our teachers, employers, friends and family — thinking more in terms of neurodiversity is much more inclusive, much less stigmatizing,” says Dr. Martin. “It just recognizes that there are going to be differences in how people go into an environment.”
It remains controversial—but it doesn’t have to be
April 30, 2019
Scientific American
At the annual meeting of the International Society for Autism Research (INSAR) in Montreal, Canada in May, one topic widely debated was the concept of neurodiversity. It is dividing the autism community, but it doesn’t have to.
The term “neurodiversity” gained popular currency in recent years but was first used by Judy Singer, an Australian social scientist, herself autistic, and first appeared in print in the Atlantic in 1998.
Neurodiversity is related to the more familiar concept of biodiversity, and both are respectful ways of thinking about our planet and our communities. The notion of neurodiversity is very compatible with the civil rights plea for minorities to be accorded dignity and acceptance, and not to be pathologized.
And while the neurodiversity movement acknowledges that parents or autistic people may choose to try different interventions for specific symptoms that may be causing suffering, it challenges the default assumption that autism itself is a disease or disorder that needs to be eradicated, prevented, treated or cured.
Many autistic people—especially those who have intact language and no learning difficulties such that they can self-advocate—have adopted the neurodiversity framework, coining the term “neurotypical” to describe the majority brain and seeing autism as an example of diversity in the set of all possible diverse brains, none of which is “normal” and all of which are simply different.
They argue that in highly social and unpredictable environments some of their differences may manifest as disabilities, while in more autism-friendly environments the disabilities can be minimized, allowing other differences to blossom as talents.
The neurodiversity perspective reminds us that disability and even disorder may be about the person-environment fit. To quote an autistic person: “We are freshwater fish in salt water. Put us in fresh water and we function just fine. Put us in salt water and we struggle to survive.”
There are also those who, while embracing some aspects of the concept of neurodiversity as applied to autism, argue that the severe challenges faced by many autistic people fit better within a more classical medical model.
Many of these are parents of autistic children or autistic individuals who struggle substantially in any environment, who may have almost no language, exhibit severe learning difficulties, suffer gastrointestinal pain or epilepsy, appear to be in anguish for no apparent reason or lash out against themselves or others.
Many of those who adopt the medical model of autism call for prevention and cure of the serious impairments that can be associated with autism. In contrast, those who support neurodiversity see such language as a threat to autistic people’s existence, no different than eugenics. No wonder this concept is causing such divisions. Yet, I argue that these viewpoints are not mutually exclusive, and that we can integrate both by acknowledging that autism contains huge heterogeneity.
Before we address heterogeneity, a technical aside about terminology:
So what is the huge heterogeneity in the autism spectrum?
One source of this is in language and intelligence: As I hinted at, some autistic people have no functional language and severe developmental delay (both of which I would view as disorders), others have milder learning difficulties, while yet others have average or excellent language skills and average or even high IQ.
What all individuals on the autism spectrum share in common are social communication difficulties (both are disabilities), difficulties adjusting to unexpected change (another disability), a love of repetition or “need for sameness,” unusually narrow interests, and sensory hyper- and hypo-sensitivities (all examples of difference).
Autism can also be associated with cognitive strengths and even talents, notably in attention to and memory for detail, and a strong drive to detect patterns (all of these are differences).
How these are manifested is likely to be strongly influenced by language and IQ.
The other source of the huge heterogeneity is that autism is frequently accompanied by co-occurring conditions. I mentioned gastrointestinal pain or epilepsy (both examples of disorders and sometimes diseases), dyspraxia, ADHD and dyslexia (all examples of disabilities), and anxiety and depression (both examples of mental health conditions). This is just a partial list. A recent study shows that 50 percent of autistic people have at least four such co-occurring conditions (including language disorder or learning difficulties), and more than 95 percent of autistic children have at least one condition in addition to autism.
The relevance of this for the neurodiversity debate is that if we dip into the wide range of features that are seen in autism, we will find differences and disabilities (both compatible with the neurodiversity framework), and we will find examples of disorders and even diseases, which are more compatible with a medical than a neurodiversity model.
Regarding scientific evidence, there is evidence for both neurodiversity and disorder.
For example, at the genetic level, about 5 to 15 percent of the variance in autism can be attributed to rare genetic variants/mutations, many of which cause not just autism but also severe developmental delays (disorder), while about 10 to 50 percent of the variance in autism can be attributed to common genetic variants such as single nucleotide polymorphisms (SNPs), which simply reflect individual differences or natural variation.
At the neural level, some regions of the autistic brain (such as the amygdala, in childhood) are larger, and others (such as the posterior section of the corpus callosum) are smaller. These are evidence of difference but not necessarily disorder. Early brain overgrowth is another sign of difference but not necessarily disorder.
Post-mortem studies of the autistic brain reveal a greater number of neurons in the frontal lobe, suggesting that there may be reduced apoptosis (or pruning of of neural connections) in autism, but again this may just be evidence for difference rather than disorder. Against this, structural differences in the language areas of the brain in autistic individuals who are minimally verbal are likely to be a sign of disorder.
Functional MRI (fMRI) studies at times show less or more brain activity during different tasks, and again this can be interpreted in terms of difference and disability, but not clearly evidence of disorder. On the other hand, where autistic individuals have demonstrable epilepsy with a clear electrophysiological signature, this is a sign of disorder or even disease.
At the behavioral and cognitive levels autistic people show both differences, signs of disability and disorder. For example, young autistic toddlers may look for longer at nonsocial stimuli than at social stimuli, and autistic people may show their best performance on IQ tests on the Block Design subtest, perhaps reflecting their strong aptitude for attention to detail and disassembling complex information into its component parts.
Both of these are simply differences, compatible with the neurodiversity model.
Aspects of social cognition reflect areas of disability in autism, and are often the reason for why they seek and receive a diagnosis.
But if an autistic person has severe learning difficulties or is minimally verbal (defined as having fewer than 30 words), this is arguably beyond neurodiversity and more compatible with the medical model.
In sum, there is a case for all of the terms “disorder,” “disability,” “difference” and “disease” being applicable to different forms of autism or to the co-occurring conditions.
Neurodiversity is a fact of nature; our brains are all different.
So there is no point in being a neurodiversity denier, any more than being a biodiversity denier. But by taking a fine-grained look at the heterogeneity within autism we can see how sometimes the neurodiversity model fits autism very well, and that sometimes the disorder/medical model is a better explanation.
What is attractive about the neurodiversity model is that it doesn’t pathologize and focus disproportionately on what the person struggles with, and instead takes a more balanced view, to give equal attention to what the person can do.
In addition it recognizes that genetic or other kinds of biological variation are intrinsic to people’s identity, their sense of self and personhood, which should be given equal respect alongside any other form of diversity, such as gender. But to encompass the breadth of the autism spectrum, we need to make space for the medical model too.
Just because you value neurological differences doesn’t mean you’re denying the reality of disabilities
Aiyana Bailin
June 6, 2019
Scientific American
To my dismay, Simon Baron-Cohen’s recent article “The Concept of Neurodiversity is Dividing the Autism Community” perpetuates a common misunderstanding of the neurodiversity movement: that it views autism as a difference but not a disability.
Baron-Cohen presents the issue as one of opposing sides: the medical model, which sees autism as a set of symptoms and deficits to be cured or treated, and the neurodiversity model, which he believes ignores any disabling aspects of autism.
Unfortunately, this confuses the neurodiversity movement with the social model of disability, and it is an incomplete understanding of the social model at that.
Before I go into details, let me summarize what the neurodiversity movement does believe:
Disability is a complicated thing. Often, it’s defined more by society’s expectations than by individual conditions. Not always, but often.
The social model of disability comes from the field of disability studies. It says that a person is “disabled” when the (societal) environment doesn’t accommodate their needs.
An example: in a world where ramps and elevators are everywhere, a wheelchair user isn’t “disabled,” because he/she/they can access all the same things as a person who walks: schools, jobs, restaurants, etc.
However, providing equal opportunity doesn’t mean ignoring the differences and difficulties a wheelchair user may experience.
In the 2004 article “The Right Not to Work: Power and Disability,” Sunny Taylor explains:
“The state of being mentally or physically challenged is what [disability theorists] term being impaired; with impairment comes personal challenges and drawbacks in terms of mental processes and physical mobility…. Disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated. Disabled people have limited housing options, are socially and culturally ostracized, and have very few career opportunities.”
Few (if any) neurodiversity advocates deny that impairments exist in autism. Or that some impairments are more challenging than others, with or without accommodations.
We, like Baron-Cohen, hope to solve the health struggles that often come with autism, such as epilepsy and digestive issues.
But while these are more common among autistic people than nonautistic (or “neurotypical”) people, they aren’t actually symptoms of autism.
And culture affects these things, too. Depending on time and place in history, epilepsy could make a person a respected shaman or suspected of demonic possession. Gluten allergies are much easier to accommodate now than they were 20 years ago before food companies started offering gluten-free options. If wheat and rye went extinct, gluten allergy would never be a disability again!
When we talk about “not pathologizing autism,” we don’t mean “pretending autistic people don’t have impairments.” But we also don’t assume that neurological and behavioral differences are always problems.
For example, there’s nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance.
Sadly, I have yet to meet a therapist who doesn’t treat the two as equivalent and in equal need of correction.
While there is a lot of overlap with the social model, the neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability (I will focus here on autism, but neurodiversity is about “all kinds of minds”).
This requires challenging our assumptions about what’s normal, what’s necessary and what’s desirable for a person to live well. Of course, better accommodations and reduced stigma would improve our lives immensely. But so would a broader definition of a meaningful life.
As Taylor puts it: “Western culture has a very limited idea of what being useful to society is. People can be useful in ways other than monetarily.”
The neurodiversity movement believes in:
We believe that a person who needs lifelong care can also be happy and reach personal goals. Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”
But is independence really about being able to brush your own teeth, or is it more about being able to choose your own friends? Disability theorists and neurodiversity advocates think the second is far more important. Most therapies, however, teach only concrete practical skills, not personal empowerment.
When we say “Autism is just another way of being human,” we mean that profound impairments don’t change a person’s right to dignity, to privacy and to as much self-determination as possible, whether that means choosing their career or choosing their clothes.
I cringe to see how often autistic people get videoed at their worst, without their consent, and broadcast on the internet for the world to see. You would probably be furious if someone did that with your moments of deepest personal struggle! The fact that these kids (and adults) can’t speak up doesn’t mean they’re okay with it. Inability to answer is not consent.
Additionally, autistic children are regularly subjected to therapies that teach them to hide their discomforts, stifle their personalities and be more obedient (or “compliant”) than their neurotypical peers, putting them at increased risk of bullying and sexual abuse.
Respecting neurodiversity means:
Inability to respond doesn’t mean inability to comprehend, as we’ve heard many times from self-advocates like Carly Fleischmann and Ido Kedar.
Baron-Cohen mentions “social difficulties” as a disability in autism, and for many autistic people, their social struggles are indeed disabling. But that’s an incomplete picture.
Some autistic people genuinely prefer their own company.
Many autistic people socialize better with other autistic people than with typical peers, so perhaps we shouldn’t judge their social skills solely on their interactions with neurotypicals.
And, perhaps most importantly, one of the biggest social difficulties faced by autistic people is neurotypical people’s reluctance to interact with those they perceive as “different.”
That’s a social problem caused for autistic people by nonautistic people, not a social disability in autism. Asking only autistic people to change how they socialize is like asking minorities to speak and dress more like white people in order to be accepted.
That’s a really bad way to combat prejudice, racial or neurological.
More people now use the language of neurodiversity, talking about accepting and supporting autistic differences. Unfortunately, however they phrase it, most autism therapies still uphold “more typical behavior” as the gold standard of success. Even though numerous autistic adults warn that the strain of faking normality often leads to depression, burnout and even regression later, years after the therapy was declared a success.
Respecting neurodiversity means:
The same goes for “quiet hands” or any time an autistic child is forced to act more typical at the expense of energy they need for intellectual development or personal growth. Studies are finally confirming what autistic people have said for decades: we get better outcomes when it’s the caregivers rather than the children who are taught to behave differently.
It’s tragic how often the autistic viewpoint is ignored by researchers and therapy companies.
Thinking in terms of neurodiversity means challenging the assumption that pretend play is necessary just because it’s what neurotypical children do. While typical children learn with a hands-on, stepwise approach, many autistic children learn best by observing for a long time before trying a new skill.
Just as visual learners or auditory learners should be allowed to use the learning method that works best for them, so too should autistic children. We should respect that they usually learn things in a different order than typical kids do, and stop tracking their progress on neurotypical developmental timelines.
I’m a respite carer. I’ve had clients on the spectrum (and with other developmental disabilities) from ages four to the early 20s. Many are nonverbal or minimally verbal. I believe all are intelligent in their own ways, even if they have intellectual disabilities. I have clients who melt down or blow up.
I sympathize with their frustrations.
There are struggles that come with being far from “normal” and struggles that come with being almost “normal”—not to mention, typical lives are hardly free of challenges! Struggle is part of everyone’s life, not just disabled people’s.
Many of us assume we know what a good life looks like, but we’re very limited by our own experiences. A good life means different things to different people. Just ask a Syrian refugee and a New York socialite what they need to be happy.
My clients are complicated, just like all human beings. I have clients who do gross and socially inappropriate things in public. If I am embarrassed by their actions, that’s my problem, not theirs.
I have clients who gently stroke my hair with shaky hands, who silently share their favorite foods with me, who flap and jump and screech with excitement when I arrive at their door. I wouldn’t trade their flapping hands and shining eyes for anything in the world.
Their very existence is beautiful.
My clients usually have impairments. My clients are often disabled. My clients are all cool and interesting people. Some of my clients notice things others miss. Some communicate eloquently without language. Some make jokes using only one or two words. Some have skills in memory, engineering and music that make me envious.
You might be very surprised by which descriptions belong to which clients.
Respecting neurodiversity means:
I suspect parents are thinking, “But I have to teach my child how to get along in this world! I might be willing to change for them, but other people won’t.” Yes, you can work to teach your child the rules of your society, without letting those lessons take over their life.
Would you let a therapist physically restrain her for biting her nails? Hide his favorite food until he cooperates?
If it’s not okay for a neurotypical child, it’s not okay for an autistic one.
Edmund Sonuga-Barke, Anita Thapar
ADHD and autism spectrum disorder are conceptualized as discrete, categorical, neurodevelopmental disorders, which originate in early development and are assumed to be the result of underlying brain dysfunction. From one perspective, these definitions provide important clarity for clinical practice and ensure we are guided by research progress over the past 40 years.
By contrast, others have argued that alternative ways of thinking are needed. Some challenges to current concepts are empirical. For instance, research shows that neither ADHD or autism spectrum disorder are categorical in nature, but rather behave as population dimensions with no clearcut boundary differentiating individuals with, from those without the conditions.
Different neurodevelopmental disorders also show marked phenotypic and genetic overlap. Furthermore, neurodevelopmental conditions are highly heterogeneous—individuals with similar clinical presentations can have very different neurocognitive profiles. Finally, for ADHD and possibly autism spectrum disorder, emerging evidence of adult-onset forms could be viewed as a challenge to their standing as neurodevelopmental conditions.
Alongside, but largely independent of evidence- based challenges, has come an ideologically inspired proposal to completely rethink the way we understand these conditions—replacing the notion of disorder underpinned by dysfunction with that of neurodiversity. In its promotion of equality-for-all, the neurodiversity perspective shares much in common with other human rights movements.
The term has been adopted by many of those who are affected, although there is much variability in how radically it is interpreted. Some have questioned or rejected the notion that ADHD and autism spectrum disorder are caused by brain dysfunction and therefore intrinsically cause impairment.
From the neurodiversity perspective, these conditions are seen as variations in brain structure and function, which lead to ways of thinking and behaving that are different from most people in society. These differences can be advantageous (both to the individual and the group) under some circumstances and disadvantageous under others.
Any impairment experienced by neurodiverse people occurs, not as an intrinsic part of a disorder, but because there is a mismatch between their ways of thinking and behaving and their environments. Their environments are structured in accordance with neurotypical perspectives.
Furthermore, such perspectives can undervalue and undermine the unique gifts, strengths, and qualities that neurodiverse individuals bring to a situation. The failure to recognize such qualities can lead to shame or stigma and low self- worth, which can result in mental health problems.
The neurodiversity movement lifts up the perspectives and experiences of neurodiverse individuals over clinicians and scientists and encourages them to take control of narratives about their lives.
Adopting a neurodiversity perspective for ADHD and autism spectrum disorder will change the focus and purpose of research and how it is practiced.
Although disorder-based and neurodiversity-inspired researchers have the same ultimate goal—to provide an evidence-base to reduce any impairment experienced by neurodiverse people—they go about achieving this aim in radically different ways.
Research done within the disorder-based framework, with which we are most familiar, focuses on understanding the biopsychosocial basis of dysfunction within the individual so that it can be targeted, symptoms can be alleviated, and associated impairment can therefore be reduced.
By adopting a neurodiversity framework, the researcher will turn the spotlight on the neurodiverse person’s physical and social environment. They will attempt to understand how the environment’s structure constrains and limits a neurodiverse person and leads to impairment and an undermining of their sense of self and wellbeing. They will assess the experience of living with ADHD and autism spectrum disorder within those environments.
There will also be a focus on uncovering the strengths and talents of neurodiverse people, either those that might be linked closely to their condition (e.g., creativity and energy in ADHD or an eye for detail and orderly thinking in autism spectrum disorder) or obscured by it under normal circumstances.
Finally, there will be a strong interest in understanding the attitudes of neurotypical individuals and organizations towards neurodiverse people and how these attitudes create risks for stigma, low self-esteem, and mental health problems.
The neurodiversity perspective will also lead to a new more participatory way of doing research, with neurodiverse individuals collaborating in the co-design of studies and co-creation and interpretation of knowledge—forging a shared narrative of what it means to have ADHD or autism spectrum disorder and ways that impairment can be alleviated by transforming social structures.
From a radical neurodiversity perspective, the goal of understanding the pathophysiology of ADHD and autism spectrum disorder could be relegated to being of secondary importance, perhaps as a way of studying individual-environment match and mismatch.
The research priorities encouraged from a neurodiversity perspective are mirrored at the level of clinical practice. The focus again is shifted to the environment, with a strong focus on adapting environments in schools, the workplace, and other settings (e.g., organized social and leisure groups and clubs) to make them more neurodiverse-friendly and change the attitudes of neurotypical people. This intervention focus would include setting a societal agenda that focuses on adjusting environments to better suit those who are different.
This approach contrasts with the expectation of the specialist clinician fixing or removing a deficit. The paradigm could emphasize more societal and public health responsibilities for supporting neurodiversity, including dealing with stigma, stereotypes, and discrimination via public education, training, policy, and legislation.
An advantage of these approaches is that they reduce complete dependence on specialist health-care provision, in which a diagnosis is often required for allocating resources, including changes to schools or the workplace. Interventions can also look to transform the way that neurodiverse people see themselves, through a strengths-based perspective that facilitates aptitudes and talents.
We eschew a radical interpretation of neurodiversity because a diagnosis and treatment has been shown to be helpful for many. However, rather than a complete reliance on disorder-based concepts and related treatment approaches, we can see many advantages of incorporating the concept of neurodiversity alongside mainstream research and clinical practice.
Indeed, there is no contradiction between traditional approaches that look to give neurodiverse individuals additional resources through clinical treatment and neurodiverse approaches that look to adapt environments and transform neurotypical attitudes: both approaches are beneficial and together will improve the lives of neurodiverse people.
Respecting neurodiversity means listening to autistic adults and taking them seriously when they tell us that the psychological cost of fitting in usually outweighs the benefits.
It means accepting that some kids will learn to write but never talk, or will always understand music better than manners, or will never have an interest in sports, or don’t identify with a binary gender; and that there is room in this world to appreciate and celebrate all these individuals for who they are, regardless of how much help they need.
Doing so makes their world, and ours, a better place.
Sonuga-Barke, E., & Thapar, A. (2021). The neurodiversity concept: is it helpful for clinicians and scientists?. The lancet. Psychiatry, 8(7), 559–561. https://doi.org/10.1016/S2215-0366(21)00167-X
Xiao, Z., Qiu, T., Ke, X., Xiao, X., Xiao, T., Liang, F., Zou, B., Huang, H., Fang, H., Chu, K., Zhang, J., & Liu, Y. (2014). Autism spectrum disorder as early neurodevelopmental disorder: evidence from the brain imaging abnormalities in 2-3 years old toddlers. Journal of autism and developmental disorders, 44(7), 1633–1640. https://doi.org/10.1007/s10803-014-2033-x
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