Autism

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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.

WHAT IS AUTISM? • NEUROQUEER

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

Despite what people believe, Autism is not defined by rudeness, masculinity, or having any kind of mathematical skill. In the scientific literature, it’s arguable whether the disability should even be defined by the presence of clear behavioral signs, such as trouble reading social cues or hesitating to initiate contact with other people. Instead of looking to the external signals of Autism that others might pick up on, it’s important that we instead focus on the neurobiological markers of the neurotype, and the internal experiences and challenges that Autistic people themselves report.

Autism is neurological. Autism is a developmental disability that runs in families and appears to be largely genetically heritable. However, it is also multiply determined, meaning it has no single cause: a whole host of different genes appear to be associated with Autism, and every Autistic person’s brain is unique and exhibits its own distinct patterns of connectivity. Autism is a developmental disability because compared to neurotypical milestones, it comes with delays: many Autistic people continue to grow in their social and emotional skills for much later in life than allistics tend to. (However, this may be due to the fact that Autistic people are forced to develop our own social and emotional coping skills from scratch, because the neurotypical methods taught to us don’t suit how we process information—more on this later.) Autism is associated with specific and pervasive differences in the brain, which result in us diverging from neurotypical standards, in terms of how our brains filter and make sense of information.

Unmasking Autism: Discovering the New Faces of Neurodiversity

Autistic people have differences in the development of their anterior cingulate cortex, a part of the brain that helps regulate attention, decision making, impulse control, and emotional processing. Throughout our brains, Autistic people have delayed and reduced development of Von Economo neurons (or VENs), brain cells that help with rapid, intuitive processing of complex situations. Similarly, Autistic brains differ from allistic brains in how excitable our neurons are. To put it in very simple terms, our neurons activate easily, and don’t discriminate as readily between a “nuisance variable” that our brains might wish to ignore (for example, a dripping faucet in another room) and a crucial piece of data that deserves a ton of our attention (for example, a loved one beginning to quietly cry in the other room). This means we can both be easily distracted by a small stimulus and miss a large meaningful one.

Unmasking Autism: Discovering the New Faces of Neurodiversity

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.

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.

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

“I am not the math-minded type of Autistic,” Tisa says. “I am the kind who thinks about people obsessively.

Unmasking Autism: Discovering the New Faces of Neurodiversity

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 people process the world from the bottom up.
What unites us, generally speaking, is a bottom-up processing style that impacts every aspect of our lives and how we move through the world, and the myriad practical and social challenges that come with being different.

Unmasking Autism: Discovering the New Faces of Neurodiversity

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.

The Spectrum

Understanding the Spectrum” by Rebecca Burgess is a popular re-conceptualization of the autism spectrum from a line to a color wheel. A color wheel better captures our spiky profiles. Thank you, Rebecca, for giving this to the world.

contact | rebecca-burgess

Autism, Society, and Me

This list is presented as first person but compiled from the perspectives of several autistic Stimpunks.

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.

Dr. Devon Price

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.

Dr. Devon Price
Autism Self Diagnosis & Gatekeeping… Autism & Society

Where I saw the first irrefutable proof of myself, though, so many others saw a referendum.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

I spent twenty-seven years trying to convince people that I was normal enough to accept, or at least leave alone, and no one ever fully bought it. When I finally knew why that experiment was such an ongoing failure, though, few believed that either. I was using it as an excuse. I was exaggerating. I was faking. I was not as autistic as someone else someone knew and was, therefore, not really autistic.

These comparisons only ever go in one direction. No one has ever said to me, “Temple Grandin is a successful scientist, writer and public speaker, and you have the career of a mildly plucky freelancer half your age. You can’t possibly be autistic.” I suspect that this is because no one is genuinely trying to weigh what they know about me against a set of diagnostic criteria, or fit me into their greater understanding of autistics in the world. What people are really doing when they’re trying to determine if I’m really autistic is figuring out if I make them uncomfortable or sad enough to count. If I show any coping skills, any empathy, any likability, any fun essentially any humanity–I complicate the narrative too much and usually end up ignored.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

This separation between real autistics and people who are “just quirky,” “just awkward” or “almost too high functioning to count” is a mental dance that non-autistics have to do whenever they’re confronted with a 3-D autistic human being in the flesh. Otherwise everything they’ve ever thought, everything they’ve ever been told about us, starts to seem a little monstrous.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

Most of us are haunted by the sense there’s something “wrong” or “missing” in our lives—that we’re sacrificing far more of ourselves than other people in order to get by and receiving far less in return.

Unmasking Autism: Discovering the New Faces of Neurodiversity

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

Community Resources

Autism. Nearly 80 years on from the original misunderstandings in the 1940s.  So, what’s changed, in research?  Almost everything.

Autism: Some Vital Research Links.

Ann Memmott maintains a list of vital autism research links.

AutisticSciencePerson maintains a Resources page for:

  • autistic maskers of any gender
  • newly diagnosed autistic people/questioning if autistic
  • neurotypicals and non-autistics
  • parents of autistic people

Mykola Bilokonsky maintains the Public Neurodiversity Support Center.

Pete Wharmby maintains a “Neurodivergent Community” Twitter list.

We maintain a page confronting bad autism research.

We also maintain a page celebrating useful autism research.

Respectfully Connected: Advice to Teachers and Parents of Autistic Kids

But embracing autism or accepting autistic people for who they are does not mean ignoring the legitimate challenges. Far from it. It simply means acknowledging that autistic people and all neurodivergent people deserve the same civil rights as others, which advocates like Sam Crane at ASAN have articulated. Often, they are the ones who want to include it in the larger movement for disability rights and request more accommodations. Many of them recognize that some autistic people have more impairments than others and want to find ways to help autistic people with comorbidities like epilepsy and gastrointestinal issues. Embracing autistic people and acknowledging their needs are not mutually exclusive ideas; they are complementary. For the most part, the increase in diagnoses has given autistic people something important: a community.

Acceptance of autism doesn’t mean a denial of those impairments any more than accepting other disabilities means denying their impairments. One of the best descriptions of this dichotomy came from autistic author and advocate John Elder Robison.

“Autism is a unique condition in medicine because it confers powerful disability and really extraordinary exceptionality,” he told me back in 2015. “Our duty in autism is not to cure but to relieve suffering and to maximize each person’s potential.”

We’re Not Broken: Changing the Autism Conversation

We follow and recommend this advice:

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.

Respectfully Connected | #HowWeDo Respectful Parenting and Support
  • 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

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.

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

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

It’s people’s own attitudes that often lie behind alleged ‘autistic behaviour’.

Ann Memmott

Meeting our children where they are doesn’t mean giving up on them. It means seeing them as a whole person, broadening their access to communication, helping them figuring out their unique learning styles, helping them figuring out their sensory profile, and putting accommodations in place. When we work with our children instead of against them, instead of trying to fix them, we end up with happier children. And that is a goal worth striving for.

Meghan Ashburn, I Will Die On This Hill
Empathetic and Respectful Therapy

Image source: Non-ABA Evidence Based Practice | Therapist Neurodiversity Collective

Applying ABA in therapeutic practice is entirely unacceptable to us. Therapist Neurodiversity Collective does things differently:

  • Zero ABA, including positive reinforcement
  • Zero desensitization, tolerance, or extinction targets or approaches
  • Zero neuronormative goals (masking of sensory systems, monotropic interests systems, anxiety)
  • Zero training neurotypical social skills

We are trauma-informed and respectful of sensory systems, diversity in social intelligence, autistic learning styles, including monotropic interest systems.

We take the research framework from developmental and relationship-based therapy models, use our knowledge of client and caregiver perspectives (no goals for masking, eye contact, whole body listening, appearing neurotypical, etc.), and apply our clinical background to implement therapy practices which are respectful, culturally competent, trauma-sensitive and empathetic.

Non-ABA Evidence Based Practice | Therapist Neurodiversity Collective

We presume competence.

We believe that AAC has no prerequisites.

We respect sensory differences.

We respect body autonomy.

Most importantly, we continually learn from our neurodivergent mentors as to what therapy approaches and methodologies are respectful and uphold human rights and self-determination.

Non-ABA Evidence Based Practice | Therapist Neurodiversity Collective

It’s pretty easy to tell if someone finds a therapy helpful or not, regardless of whether they are verbal. How is the person’s mood? Do they find therapy sessions distressing? If it’s the latter, maybe that kind of therapy isn’t the best fit. Being unable to speak and being unable to communicate at all are not the same thing. Listen to your clients, especially the ones who do not speak. They’re the ones who need you to listen the most.

So what kind of therapy is compatible with neurodiversity? The answer is surprisingly simple. Is your therapy designed to improve communication, reduce anxiety and/or redirect harmful behaviors?  That’s not in opposition to the neurodiversity paradigm at all. Neurodiversity does not mean that we want a hall pass to smash windows or bite our fingers until we bleed. It doesn’t mean that we are ignoring the reality of our lives. It doesn’t mean that those of us who are verbal and/or who need fewer supports aren’t thinking about our nonverbal peers. It means understanding, to paraphrase Martin Luther King Jr., that a riot is the language of the unheard. Listen to us. Please. 

ADVICE FOR THERAPISTS FROM A NEURODIVERSITY ADVOCATE

Our findings reveal the longitudinal impact of mindful parenting on child psychopathology. In particular, our findings indicate that mindful parenting is associated with lower levels of child internalizing and externalizing symptoms through lower levels of maladaptive parent–child interactions.

When parents of children with ASD feel distressed, they may experience increased agitation and irritability and instigate more destructive interactions and maladaptive communications with their children (Chan & Lam, 2016; Riina & McHale, 2010). In particular, they may be more authoritarian, harsh, and hostile in their parenting and show higher levels of child neglect, maltreatment, and abuse (Chan et al., 2022b). They may also be less patient, caring, and warm to their children and show lower levels of parental support, guidance, and nurturance (Chan et al., 2022b). Importantly, such increments in negative parenting behaviors and decrements in positive parenting behaviors may model poor self-regulation, which can have adverse effects on the children’s mental and behavioral health (Chan et al., 2022a).

The dispositional tendency toward mindfulness may enable parents of children with ASD to practice mindful parenting (Wang et al., 2022). Mindful parenting refers to providing intentional, present-centered, and non-judgmental attention to parent–child interactions (Bögels et al., 2010; Kabat-Zinn & Kabat-Zinn, 1997). Specifically, mindful parents pay close attention and listen carefully to their children (Duncan et al., 2009). They also bring an open and non-judgmental attitude and show empathy and compassion toward their children (Duncan et al., 2009). Furthermore, they are aware of their children’s and their own emotional states and regulate their own affective reactions during their interactions with their children (Duncan et al., 2009).

Mindful parenting may enhance parent–child closeness in families of children with ASD (Lippold et al., 2015). Parent–child closeness refers to the presence of intimacy, positive affection, and self-disclosure in the parent–child relationship (Paulson et al., 1991). As mindful parents attend closely and listen carefully to their children, they can understand their children’s thoughts and feelings more accurately and show greater sensitivity and responsiveness to their children’s concerns and needs (Lippold et al., 2021). Also, as these parents bring an open and non-judgmental stance to the attributes and behaviors of their children, they can show higher levels of parental acceptance and compassion (Duncan et al., 2015). Furthermore, as they are able to regulate their own emotions in parenting, they can parent calmly and consistently (Benton et al., 2019). In this way, they can create a warm and loving atmosphere for their parent–child interactions (Duncan et al., 2009).

These findings suggest that parents who incorporate mindful awareness into their parenting processes are likely to have better parent–child relationships. With less destructive parent–child interactions, children with ASD may have fewer emotional and behavioral problems.

The negative associations of mindful parenting with child internalizing and externalizing symptoms suggest that a mindful way of parenting may be linked to lower levels of child psychopathology. This finding is consistent with earlier studies showing that higher levels of mindful parenting were associated with lower levels of child emotional and behavioral problems (Aydin, 2022; Cheung et al., 2019). The finding is also in line with prior studies reporting the positive impact of mindful parenting on child well-being and functioning (Cheung et al., 2021; Medeiros et al., 2016). Given the benefits of mindful parenting to child development, practitioners should facilitate parents of children with ASD to cultivate mindfulness and apply it in parenting (Ho et al., 2021).

This finding suggests that mindful parenting may shield against child psychopathology through fewer negative parent–child interactions (Han et al., 2021; Parent et al., 2016).

Specifically, our model indicates that mindful parenting may be associated with lower levels of child emotional and behavioral problems through lower levels of maladaptive parent–child interactions. Importantly, our model points to the utility of a family process perspective in conceptualizing and understanding the evolvement of psychological problems in children with ASD (Chan et al., 2022a).

Longitudinal Impact of Mindful Parenting on Internalizing and Externalizing Symptoms Among Children with Autism Spectrum Disorder | SpringerLink
Mindfulness Training for Staff in a School for Children with Autism and Other Developmental Disabilities: Effects on Staff Mindfulness and Student Behavior | SpringerLink

Don’t take away your child’s voice; take away their suffering. ABA is a cruel response to aggressive behavior. Meet that behavior with love, calm, support, and an investigative search for the source of your child’s struggle instead. Learn why your child is getting so stressed out that they are frightening the people around them, and help make your child’s life calmer, safer, and happier. That is what you were hoping ABA therapy would do, but I am here to tell you that ABA cannot do that. It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.

IF NOT ABA THERAPY, THEN WHAT?

When we slowed all of the therapies down to a crawl, let go of our expectations about development, and remembered that Evie is actually a kid that deserves to be a, you know, kid, Evie’s quality of life improved.  And so did ours as parents.  I know that there is a tremendous amount of pressure to “intervene” when a kid is not doing things according to the book.  I know there is a tremendous amount of guilt, that you feel as a parent when you’re not doing enough for your kid.  But enough can become too much really quickly.  And I would argue that the current prescription for early intervention is an overdose.  If I could go back and do it again, we would do a bit of pt and a bit of speech.  And we would do the hippotherapy and aquatic therapy because Evie loved those and because they turned out to be the most beneficial.  Coincidence?  I don’t think so.

I’ve come to hate the word intervention.  Evie doesn’t need an intervention.  I don’t want to stop behavior.  I want to learn the cause of it.  Then I want to support her or accommodate her as necessary.  When we look at behaviors as needing intervention rather than understanding, we cut out the most important piece of the puzzle.

the case for backing the frick off

When I think about autism “therapies”, a lot of them are focused on trying to force autistic children to become more typical – extinguishing problem behaviours and trying to ‘teach’ social skills, for example. In my opinion, any strategy that does not prioritize communication skills is not only bound to fail but it is also doing a huge disservice to the autistic person. How can an autistic child socialize with his peers if he can’t communicate with them? Why are we spending so much time suppressing behaviours instead of giving a child the means to tell us how she feels?

How I Do It: AUTISM AND AAC: FIVE THINGS I WISH I HAD KNOWN by Deanne Shoyer

The target of intervention is not autistic children, but their social and physical environments. Autistic children [need to be] supported in families and communities to develop as unique and valued human beings, without conforming to the developmental trajectory of their neurotypical peers.

Briannon Lee

Get respectfully connected. Learn more on our Learning and Education Access pages.

Find Your People and Co-Create Ecologies of Care

In Te Reo Māori the word for Autistic ways of being is Takiwātanga, which means “in their own space and time”. Most Autists are not born into healthy Autistic families. We have to co-create our Autistic families in our own space and time.

A communal definition of Autistic ways of being

Until one day… you find a whole world of people who understand.

The internet has allowed autistic people- who might be shut in their homes, unable to speak aloud, or unable to travel independently- to mingle with each other, share experiences, and talk about our lives to people who feel the same way.

We were no longer alone.

7 Cool Aspects of Autistic Culture » NeuroClastic
“Find Your People” by Swamburger of Mugs and Pockets

Autistic kids need access to autistic communities. They need access to autistic mentors. They need to know that the problems they go through are actually common for many of us! They need to know they are not alone. They need to know that they matter and people care about them. They need to see autistic adults out in the world being accommodated and understood and respected. They need to learn how to understand their own alexithymia and their own emotions. They need to be able to recognize themselves in others. They need to be able to breathe.

AutisticSciencePerson

Opening doors has become my calling.


Welcome to this house.


Find your people.

All Hail Open Doors, Swamburger and Scarlet Monk of Mugs and Pockets

Generally punks can agree to the loose notion that “punk is an attitude/ individuality is the key.” It was a yearning to be different, to distance oneself from the mainstream mass of society. But punk was also a desire for community, a hunger for fellowship with like-minded souls…

Dissertation or Thesis | We accept you, one of us?: punk rock, community, and individualism in an uncertain era, 1974-1985
Are you awake or are you sleeping?
Are you afraid? We've been waiting for this meeting

We have come here for you, and we're coming in peace
Mothership will take you on higher, higher
This world you live in is not a place for someone like you
Come on, let us take you home

There is a flaw in man-made matters
But you are pure, and we have to get you out of here

--A Different Kind of Human by AURORA

I believe all persons with Autism need the opportunity to become friends with other Autistic people. Without this contact we feel alien to this world. We feel lonely. Feeling like an alien is a slow death. It’s sadness, self-hate, it’s continuously striving to be someone we’re not. It’s waking up each day and functioning in falsehood (French, 1993).

Loud Hands: Autistic People, Speaking

When I meet other people, ‘autistic’ or not, there is something instinctive in me that looks for where systems in them match systems in me.
When I am around non-autistic people I soon know they function according to a generally alien system of functioning that makes little match with my own. I know this is because they are essentially multi-track and I am essentially mono.

Autism: An Inside-Out Approach: An Innovative Look at the ‘Mechanics’ of ‘Autism’ and its Developmental ‘Cousins’ by Donna Williams

We call ourselves Warriors and Weirdos.

Aurora Aksnes
It's just me and my MPC
Questing out to meet my tribe unique
Keep it funky for the followers eager to speak
The same dialect is on when we greet in the street, fam
Why would my sound be tampered?
Or better yet, watered down and then pampered?
Cater to who, I influence the standard
Check it… we 'bout to change some manners

--Talent MAP Mix by Mugs and Pockets

Those who are the most sensitive and traumatised and have not lost the ability to extend trust constitute an enormously rich and diverse repository of insights and hold many of the keys needed for co-creating ecologies of care.

Autistic people – The cultural immune system of human societies – YouTube

What is mutual aid?

“Solidarity, not charity.”

Why is a spoon share helpful?

  • Interdependence, understanding and support
  • Gives opportunity to help & care for other in on our own terms and within our own capacities
  • Direct support in a community within a community
  • It’s much easier to practice asking, offering, receiving, and declining among people who “get it”!

Source: Collective Community Care: Dreaming of Futures in Autistic Mutual Aid

Increasingly, autistic communities have been exposed to ideas of disability justice, interdependence, access intimacy, collective/community care, and mutual aid. Care collectives, spoon shares, and other community care groups by and for disabled people, racialized people, LGBTQ2IA+ people (and people at this intersection) are growing in number. Is there a future for autistic spaces to also act as spaces of intentional mutual aid?

Moving from a rights-based perspective to a justice-based one necessitates a look at our care systems and re-envisioning how our communities function to ensure no one is left behind.

Collective Community Care: Dreaming of Futures in Autistic Mutual Aid, Autscape: 2020 Presentations
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Published by Ryan Boren

#ActuallyAutistic retired technologist turned wannabe-sociologist. 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