Neurodiversity FAQ

ADHD Umbrella Project 2018 Neurodiversity Autism
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[image: Umbrellas of varied colors, open and hanging
inside an atrium space, to celebrate neurodiversity.]
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A NEURODIVERSITY FACTS AND MYTHS PRIMER

So you’re doing a story about Neurodiversity, or you want to know more about the Neurodiversity Movement. We’re here to help. 

First, It’s useful to know what the terms “neurodiversity” and “neurodiversity movement” mean.
  • Neurodiversity is about understanding and accepting brain-based disability. People who have brain-based disabilities are “neurodivergent.” 
  • The Neurodiversity Movement is about supporting neurodivergent people’s rights and value as human beings.
Critics of neurodiversity often say incorrect things about both neurodiversity and the neurodiversity movement. This is not surprising, as any time a minority group stands up for its rights, the majority group often resists having to change the way they think about, and treat, members of the minority group.

Since mainstream society usually takes a negative view on disability—viewing disabled people solely as living hard lives and needing help, and therefore being a burden on other people and society—it is hard for some people to understand that neurodiversity supporters can be both “really” disabled and also capable of advocacy.

Here are some misunderstandings you may have heard about neurodiversity, each followed by an explanation of why they are not accurate. 

MYTH: Neurodiversity is only about autism, and “neurodivergent” is a synonym for “autistic”


Neurodiversity is the idea that people matter and have rights, regardless of how their brains work. Neurodiversity includes people with ADHD, intellectual disability, mental illness, Down syndrome, dementia, and TBI (traumatic brain injuries), and many others, as well as autistic people. 

Because of this inclusiveness, blame-shifting claims such as "he isn’t autistic, he’s crazy" are contrary to neurodiversity principles.

The Neurodiversity Movement, however, is mostly led by autistic people and does tend to be autism-focused. 

MYTH: Neurodiversity claims autism is not a disability, and is just a “different way of looking at the world”


Autism is specifically a developmental disability. Neurodiversity advocates usually identify as being disabled, and tend to share the goals and ideals of the wider disability community. This includes using the social model of disability, which “sees the problem of disability as a problem with the society where disabled people live and not as a problem within the disabled person.” 

The social model doesn't solve everything for neurodivergent and disabled people, but it does provide guidelines for centering disabled people as humans with legitimate needs, instead of as problems or burdens. It is meant to be a contrast to the medical model of disability, in which disability is automatically a deficit, or a medical problem to be “cured.” 

The medical model does have a place in advocacy, as many neurodivergent people will advocate for and seek medical treatment for things that cause them suffering, for example anxiety, epilepsy, or chronic pain. But many barriers that neurodivergent people face can actually be fixed by societal change, like following and enforcing federal ADA (Americans With Disabilities Act) Standards for Accessible Design, rather than solely through medical research and treatments.

When people who write about neurodiversity, like author Steve Silberman, say things like, “One way to understand neurodiversity is to think in terms of human operating systems—just because a PC is not running Windows doesn't mean it's broken,” that is not denying disability. That is an illustration of the social model—saying that neurodivergent people have differences that need to be understood, not deficits to be fixed. 

Also, to quote autistic writer Emily Paige Ballou, “Autism—yes, even involving a significant degree of disability—should not be a reason why we are kept from accessing communication, education, employment, competent medical care, the right to make our own decisions and live on our own terms, friendship, romantic relationships and sexuality, freedom from abuse, or the basic premise of our lives being acceptable.”

The neurodiversity movement is always about disability rights. That is its focus.

MYTH: Neurodiversity excludes autistic people with intellectual disability or who are non-speaking, and is only for "high-functioning" quirky people who have a benign personality difference


There is no such thing as neurodiversity without people with intellectual disabilities. And people who claim neurodiversity excludes those with intellectual disability (ID) rarely bother to actually consult self-advocates with ID like Ivanova Smith, who says:

“These organizations want to focus on people with intellectual disabilities, but they ignore the self advocacy movement and autistic people with ID like me. We don’t want institutions! We don’t want segregation, we want freedom and autonomy and support in the community! They just need to see what the ID community has been asking for!”

Benign personality differences are not a brain-based disability, and so are not part of neurodiversity. Autistic people of all abilities generally experience pronounced difficulty in navigating the external world and social environments, even if other people are not aware of their struggles. (Some autistic people can mask or “pass” for stretches of time, but often at significant cost to their mental health.)

Neurodiversity encompasses all neurodivergent people. Neurodiversity advocates include self-advocates who require full-time supports, as well as parents and/or siblings of disabled and autistic people with complex and significant support needs.

Claims about neurodiversity being exclusionary also omit the history of the neurodiversity movement, as summarized by Emily Paige Ballou,

“From its inception, not only did the neurodiversity movement’s values include the most significantly disabled, but […] those individuals themselves were among our earliest pioneers. And that going back even further, the self-advocacy movement didn’t originate with the autistic community at all, but rather largely was led by institutionalized people with intellectual and other developmental disabilities.”

Every minority group has a few people who behave badly and do not represent the movement, and occasionally journalists can find one or two autistic people who do not want to be associated with high-support autistic people because they have complex needs and may “wear adult diapers and head-restraining devices.” These individuals are roundly condemned by actual neurodiversity advocates. It is not good journalism to quote such people as neurodiversity supporters.

Many people who have been integral to the neurodiversity movement are multiply disabled and have significant support needs, including Amy Sequenzia and Mel Baggs.

MYTH: Neurodiversity advocates are not really disabled if they can use Twitter or write blog posts


You can’t tell anything about a person’s abilities or disabilities by whether or not they can put words on a screen.

MYTH: Neurodiversity advocates claim "severe autism" doesn't exist


Advocates who say things that sound like this are talking about problems with functioning labels, not denying intensive disabilities. Saying “low functioning” or “severe” leads to dismissing a person’s abilities, whereas saying “high functioning” dismisses their disabilities, which is why many neurodiversity advocates use the terms “high support” and “low support” instead. 

Many autistic people have what are called “spiky profiles,” which means the same person can have both pronounced abilities and disabilities—whether or not they require full-time support. Autistic people can also have high within-person variability, meaning that, as Finn Gardiner writes, "Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life." Neurodiversity advocates want every autistic person to have all their support needs met, and have all their strengths recognized, at all times.

Also, autistic people with intensive support needs are often frustrated due to unaddressed or dismissed needs, such as communication, sensory sensitivities, anxiety, need to stim or self-regulate, and desire for routines or sameness. Neurodiversity advocates want those needs accommodated. Non-autistic people usually want autistic people to behave like non-autistic people, which is not fair or reasonable.

MYTH: But also neurodiversity advocates wants to take away funding and housing choices for people with "severe autism"


This is an intentionally misleading argument by parents who want to appropriate federal HCBS (Home and Community Based Services) funds that have been earmarked to help disabled people live in the community. These parents want to use those funds to put their adult children in boutique "neo institutions,” which is the opposite of what HCBS funds are for. These parents argue that disabled people will be safest in such group homes. 

Autistic and disabled people have been fighting for decades to stay out of institutions and instead get the services they need while living in their community. In addition, disabled people are safest when they are part of the community, not in segregated homes where their autonomy, rights, and happiness are deprioritized. 

Neurodiversity advocates think people should be able to choose where they live, even if they need help to make or express their choice. Disabled people should also be able to live together if that is their choice, even in group homes—as long as their autonomy is respected. 

MYTH: Neurodiversity claims “nonverbal” autism doesn't exist and anyone who has a speech disability is actually a genius who just needs Facilitated Communication


Neurodiversity doesn’t mean denying intellectual disability or communication disabilities. It means honoring all forms of communication and agency. As Autistic Self Advocacy Network executive director Julia Bascom writes,

“Presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support.”

Everyone can communicate. But we need more research on autistic communication and motor planning issues so we can develop best practices for autistic people with communication disabilities. Still, there are many useful forms of AAC, or Augmentative and Alternative Communication. Some people type, and others use symbol systems or text-to-speech devices. 

We also know that many autistic people legitimately communicate via Facilitated Communication (FC) and Rapid Prompting Method (RPM). However, there are also worrisome cult-like aspects to some proponents of FC and RPM. This doesn’t mean we should stop investigating best communication practices for non-speaking or partially-speaking people. We do, however, need to stop automatically dismissing communication methods that do work for some people under the ableist premise of “protecting” them.

MYTH: Neurodiversity advocates are against all autism therapies and research


Neurodiversity advocates support services, therapies, and research that are genuinely dedicated to improving autistic people’s well-being, such as addressing gastrointestinal issues, motor issues, communication needs, sleep issues, epilepsy, and anxiety. 

Unfortunately, most autism research and “treatments” are either about preventing or curing autism, or trying to condition autistic children to behave like non-autistic children. These approaches do not help autistic people, and many, like ABA Therapy, are widely considered by autistic people to be traumatizing. 

Non-autistic parents, and other people who come from outside the autistic community, often have a difficult time understanding why autistic people fight against cure-based or normalizing “treatments,” because they have usually only been exposed to the medical model idea that autism is a deficit that needs to be fixed. 

However, what autistic people need is for non-autistic people to try their best to understand how autistic people experience the world, and to respect autistic communication, processing, stimming, intensity, self-regulation, motor issues, downtime, transition, sensory sensitivity, emotional, love of sameness/dislike of change, burnout, and other needs.

MYTH: Neurodiversity means everyone can be completely independent and self-advocate without any supports


When people who are spreading myths about neurodiversity say “independence,” they generally define it as “doing everything by yourself without any supports.” Not everyone can do everything by themselves, and that’s okay! In fact, all people are interdependent on one another to some degree, whether that’s relying on other people to grow the food that we eat, show us how to do new things, or navigate complicated systems like healthcare.  

It’s not bad or wrong for people to need support with things like communicating, personal care needs (like toileting, bathing, dressing), or navigating places. The neurodiversity movement doesn’t expect everyone to be able to do things for themselves. Rather, we want people to be in control of their lives. This means, to the greatest extent possible, that the person being supported is in charge of who supports them, how they are best supported, and can seek recourse if a support provider is harming them or isn’t supporting them in the right way.

While self-advocacy is a core part of the neurodiversity movement, it is also a separate concept that means, as Mel Baggs has written, standing up for oneself—whatever form that takes.

Self-advocacy is:
  • Falling to the ground when asked to do unreasonable things because you don’t have a working communication system
  • Communicating rejections or denials such as “no”
  • Formulating a complicated argument and defense of your legal rights 
All of these are valid examples of self advocacy. Self-advocacy is exercising power over your own life. The problem with self-advocacy is that it is usually inconvenient for people who refuse to believe disabled people have agency. Neurodiversity is, if anything, more important for those who cannot advocate without support.

It is also important to note that, as Mel Baggs has stated, “‘self-advocate’ is meant to be a contrast to ‘parent-advocate.’ It does NOT mean ‘speaking up only for yourself’ and never has.”

MYTH: Neurodiversity excludes autistic people who resent and critique the ND movement, or who want to cure their autism


This is like saying feminism excludes Anne Coulter because she is a vocal critic of the movement. Neurodiversity advocates fight for the rights of all neurodivergent people, just like feminists continue to fight for Coulter's rights regardless of her personal stances.

When including critical voices in neurodiversity coverage, it is important to be aware that these voices are outliers, just as Coulter is an outlier. It is also important to be aware of whether those critics speak out against other rights-based advocacy movements, such as feminism, LBGT rights, intersectionality, and civil rights, as well as if they frequently make claims that are racist, anti-Semitic, or otherwise bigoted. Twitter feeds are usually representative, for this purpose.

While neurodiversity advocates are aware that some autistic people would like a cure for their autism, it is suspected that this desire may arise from a lifetime of being mistreated and misunderstood as an autistic person. If the world were more accepting of neurodiversity and neurodivergent people, more autistic people could be comfortable in their own skins. This is why neurodiversity advocates work so hard for wider autism understanding and acceptance.

MYTH: Neurodiversity “celebrates” neurological differences like pedophilia or psychopathy that hurt people


Understanding that people’s brains work differently is the core of neurodiversity, but blaming harmful actions on neurodivergence is unacceptable. This is why neurodiversity advocates actively dispel myths such as “autistic people who commit sexual assault don’t know any better.”

MYTH: Neurodiversity advocates want parents of autistic children with complex and intensive disabilities to be silent about the realities of their lives, and are “whitewashing” autism


Neurodiversity advocates want all of their community members treated with compassion and respect. This is not denying how difficult the lives of autistic people and their families can be; having grown up autistic, and/or being parents of autistic children ourselves, we understand all too well how hard things can be for an autistic child in a family—especially if that family is not prepared or is not understanding, due to lack of supports and/or misinformation about best practices for parenting autistic children. We also understand that life can still be challenging for families that try their hardest to follow best practices. 

However, we do not think it is fair to autistic children to be the focus in stories about how hard autism makes their families’ lives. These stories usually worsen stigma about autism and autistic people, instead of raising awareness about how better to include and accommodate autistic people as fellow humans. 

Some parents defend stories that violate their children’s privacy, saying they have the right to be “honest”—but it is not honest to tell a story about two people while only including one person’s perspective. Neurodiversity advocates believe disabled people and their family members should not have to reveal deeply personal and/or degrading details in order to prove they “deserve” supports. Access to these supports should be a right, not a reward or a privilege. 

We would like journalists to give more consideration to how they cover stories about autism and parenting: avoid using sensationalistic details, respect the privacy of people who have not given consent to have their intimate and difficult times made public, and actively encourage parents to seek neurodiversity-informed parenting resources as well as non-public parenting discussion groups. 

Journalists should also be aware of research indicating that parents who seek to understand, accept, and support their autistic children’s realities tend to have better mental health than those who do not—regardless of the nature of their children’s support needs. At the very least, these stories should include autistic-informed resources for parenting autistic children during good times, as well as during crises.

Finally, neurodiversity advocates are as angry about inadequate supports and funding for autistic children and adults (and their families) as the parents in these stories. That is why neurodiversity advocates are dedicated to policy changes and other efforts meant to benefit everyone in the autism communities.

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With Amanda Forest Vivian, Shannon Des Roches Rosa, Savannah Logsdon-Breakstone, Cara Liebowitz, Star Ford, Steven Kapp, Matt Carey, and Julia Bascom