Autism

Autistic ways of being are human neurological variants that can not be understood without the social model of disability.

If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.

A communal definition of Autistic ways of being

We’re autistic. You probably believe some wrong things about us. Myths, misconceptions, and misguided awareness campaigns overwhelm and erase the actual lived experiences of autistic people. Here is what we’d like you to know about us, autism, and our needs.

What is Autism?

In the absence of a comprehensive neurological and genetic description – which may forever remain elusive, the best way to describe Autistic ways of being is in terms of first hand lived experience of Autistic cognition and Autistic motivations. 

The following definition of Autistic ways of being reflects a collective effort of the Autistic community.  Focusing on common first hand experiences leads to a relatively compact description that can easily be validated by Autistic readers, and it also avoids getting lost in endless lists of externally observable behaviours.  Lists of external diagnostic criteria offer very little insight into underlying Autistic sensory experiences and Autistic motivations.

Instead of a diagnosis, the following test tends to deliver very reliable results.  It does not cost any money, it only takes some time.  For anyone who relates to the communal description of Autistic ways of being below, this investment of time may be the most valuable investment imaginable:

If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.

A communal definition of Autistic ways of being

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

WHAT IS AUTISM? • NEUROQUEER

Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. 

Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives. Autism can be diagnosed by a doctor, but you can be autistic even if you don’t have a formal diagnosis. Because of myths about autism, it can be harder for autistic adults, autistic girls, and autistic people of color to get a diagnosis. But anyone can be autistic, regardless of race, gender, or age. 

Autistic people are in every community, and we always have been. Autistic people are people of color. Autistic people are immigrants. Autistic people are a part of every religion, every income level, and every age group. Autistic people are women. Autistic people are queer, and autistic people are trans. Autistic people are often many of these things at once. The communities we are a part of and the ways we are treated shape what autism is like for us. 

There is no one way to be autistic. Some autistic people can speak, and some autistic people need to communicate in other ways. Some autistic people also have intellectual disabilities, and some autistic people don’t. Some autistic people need a lot of help in their day-to-day lives, and some autistic people only need a little help. All of these people are autistic, because there is no right or wrong way to be autistic. All of us experience autism differently, but we all contribute to the world in meaningful ways. We all deserve understanding and acceptance. 

About Autism – Autistic Self Advocacy Network

What Are Autistic Ways of Being?

Autistic people / Autists must take ownership of the label in the same way that other minorities describe their experience and define their identity. Pathologisation of Autistic ways of being is a social power game that removes agency from Autistic people. Our suicide and mental health statistics are the result of discrimination and not a “feature” of being Autistic.

A communal definition of Autistic ways of being

All Autistic people experience the human social world significantly different from typical individuals. The difference in Autistic social cognition is best described in terms of a heightened level of conscious processing of raw information signals from the environment, and an absence or a significantly reduced level of subconscious filtering of social information.

Autistic children tend to take longer to learn how to decode non-verbal signals from the social world, in particular signals related to abstract cultural concepts related to the negotiation of social status.

Many Autistic people are also hyper- and/or hypo-sensitive to certain sensory inputs from the physical environment. This further complicates social communication in noisy and distracting environments. With respect to Autistic sensory sensitivity there are huge differences between Autists. Some Autists may be bothered or impaired by a broad range of different stimuli, whereas others are only impacted by very specific stimuli.

Individually unique cognitive Autistic lenses result in individually unique usage patterns of the human brain, and often in unique levels of expertise and creativity within specific domains of interest and in related Autistic inertia and perseverance.

Autistic inertia is similar to Newton’s inertia, in that not only do Autistic people have difficulty starting things, but they also have difficulty in stopping things. Inertia can allow Autists to hyperfocus for long periods of time, but it also manifests as a feeling of paralysis and a severe loss of energy when needing to switch from one task to the next.

Autistic neurology shapes the human experience of the world across multiple social dimensions, including social motivations, social interactions, the way of developing trust, and the way of making friends.

A communal definition of Autistic ways of being

Every autistic person experiences autism differently, but there are some things that many of us have in common.

  1. We think differently. We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions.
    Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our body.
  2. We process our senses differently. We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.
  3. We move differently. We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to control how loud our voices are, or we might not be able to speak at all–even though we can understand what other people say.
  4. We communicate differently. We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say.
  5. We socialize differently. Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize.
    Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel! We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings.
  6. We might need help with daily living. It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.

Not every autistic person will relate to all of these things. There are lots of different ways to be autistic. That is okay!

About Autism – Autistic Self Advocacy Network

Autistic Traits

If you’ve met one autistic person, you’ve met one autistic person.

Community Saying Emphasizing That We are Individuals

Keeping in mind that we’re all individuals with individual expressions of our spiky profiles, here are some introductory pages on common autistic traits and experiences.

Autism, Society, and Me

Am I Autistic?

If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.

A communal definition of Autistic ways of being
Am I Autistic (REDUX) ~ Autistamatic

Autistic people / Autists must take ownership of the label in the same way that other minorities describe their experience and define their identity. Pathologisation of Autistic ways of being is a social power game that removes agency from Autistic people. Our suicide and mental health statistics are the result of discrimination and not a “feature” of being Autistic.

A communal definition of Autistic ways of being

Requiring diagnosis was counter to trans liberation and acceptance. The exact same is true of Autism.

Self diagnosis is not just “valid” — it is liberatory. When we define our community ourselves and wrest our right to self-definition back from the systems that painted us as abnormal and sick, we are powerful, and free.

Autism Self Diagnosis & Gatekeeping… Autism & Society

What’s Next After Diagnosis?

Whether medically diagnosed or self-diagnosed, self-identified, what’s next?

First, welcome!

This book is about what it means to be a part of the autistic community. Autistic people wrote this book. Some autistic people are just learning about their autism. We wanted to welcome them and give them a lot of important information all in one place.

This book talks about what autism is and how it affects our lives. It talks about our history, our community, and our rights. We wrote this book in plain language so that more people can understand it.

We wrote this book for autistic people, but anyone can read it. If you are not autistic, this book can help you support autistic people you know. If you are wondering whether you might be autistic, this book can help you learn more. If you are autistic, think you might be autistic, or if you want to better understand autistic people, this book is for you.

Welcome to the autistic community!

Welcome to the Autistic Community – Autistic Self Advocacy Network
Welcome to the Autistic Community

“You’re not broken, and this is nothing new. It’s how you are, how you’ve always been, and this is just the name of it. You are wonderful!”

Lorraine

Be gentle with yourself as you review your life through a new perspective. You will likely be reviewing your life through your new set of “eyes” for a significant time. This could potentially bring about some sadness and anger, especially if your autistic traits were ignored by the people around you for a very long time. I know, for myself I was angry at the many professionals that I sought out to help me over the years. Be relieved, you’ve found who you are, had unanswered questions answered and it can only get better from here on out.

Kimberly

Next, this video series from Autistimatic provides a compassionate and nuanced onboarding.

Autism Life: What next after AUTISM Diagnosis?
Autism Life: Feelings After Autism Diagnosis – Relief, Grief & Belief
Dealing with Diagnosis… Autism & Relationships 1
Does Autism Diagnosis CHANGE us?… Autism & Relationships 2

Advice to Teachers and Parents of Autistic Kids

We follow and recommend this advice:

  • Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
  • Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
  • Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
  • Treat challenges as opportunities. Each issue – whether it’s related to impulse control, a learning challenge, or a problem behavior – represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
  • Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
  • Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
  • Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
  • Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
  • Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
  • Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.

Source: A parent’s advice to a teacher of autistic kids

  • Instead of intensive speech therapy – we use a wonderful mash-up of communication including AAC, pictures scribbled on notepads, songs, scripts, and lots of patience and time.
  • Instead of sticker charts and time outs, or behavior therapy – we give hugs, we listen, solve problems together, and understand and respect that neurodivergent children need time to develop some skills
  • Instead of physical therapy – we climb rocks and trees, take risks with our bodies, are carried all day if we are tired, don’t wear shoes, paint and draw, play with lego and stickers, and eat with our fingers.
  • Instead of being told to shush, or be still- we stim, and mummies are joyful when they watch us move in beautiful ways.
  • Instead of school – we unschool and can follow our interests, dive deep in to passions, move our bodies, and control our environment

Source: Respectfully Connected | #HowWeDo Respectful Parenting and Support

I just want to do what is best for my child. Can this notion of Neurodiversity help me do that?

Yes, absolutely! The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.

Do you think I am ableist? I thought I was helping my child…


Yes, I think you’re ableist. I think most of us are ableist (even if we are ourselves disabled), and because the social climate is ableist, it takes a lot to question ourselves. They way to be respectful is not about being perfect, but we can question our own ableism so as not to let it interfere with our children and their rights.

That is hard for me to hear. I didn’t think I was ableist and it hurts to be told I am.

That’s fair enough. However, if you want to do what is best for your child you will need to move past that in order to begin to shed this ableism from your everyday reactions and choices.

How does it feel to be autistic?

That is really complex and difficult to answer. I cannot explain that in as much depth as would give you a good knowledge of it, however there are so many autistic writers you can look to for guidance on that. If you are asking me to to describe how I experience life, as compared to how you experience life, this is a huge question.

Is there a quick way to understand all this?

No, not really. The hardest part is challenging yourself and dominant social assumptions. It is a long road but the great thing is that you’re already on it. You’ve started; because you’re questioning yourself.

Source: Respectfully Connected | Neurodiversity Paradigm Parenting FAQs

1. Learn from autistic people

2. Tell your child they are autistic

3. Say NO to all things stressful & harmful

4. Slow down your life

5. Support & accommodate sensory needs

6. Value your child’s interests

7. Respect stimming

8. Honour & support all communication

9. Minimise therapy, increase accommodations & supports

10. Explore your own neurocognitive differences

Source: Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm

Learn more on our Learning and Education Access pages.

Published by Ryan Boren

#ActuallyAutistic parent and retired tech worker. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they

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