Category: Understanding Autism

Understanding autism, autism knowledge, learn about autism

What is autism? Autism Definition

Autistic Voices Education’s 3-Part Definition of Autism

There are many definitions of autism, and it is difficult to pinpoint one as exactly correct. At AuEdu we have a 3-Part Definition:

  • Autism is a naturally occurring neurological condition that causes people to sense, perceive, and experience life in a different way than people who aren’t autistic
  • Being autistic is an integral part of a person
  • Autism is a disability according to the social model of disability

This definition is not complete and might change in the future. While AuEdu’s definition is unique in its wording and format, it is not unique in the basic ideas it expresses, and is similar to the definitions by other autistic advocates.

How do you know you’re autistic?

Autistic people show lots of autistic traits.

Autistics, like all people, are unique. But our neurology (the way our brain is wired) causes us to share similar characteristics and traits. 

Autistic traits are commonly called symptoms. Calling them symptoms, however, makes it seem like they’re bad.

Autistic traits are not inherently bad OR good. They can be either, or neither. We choose to call them traits in order to show this.

But wait – some people’s autistic traits do have negative, harmful, or unpleasant expressions. We don’t mean to discount that at all.

However, when we call these symptoms, our brains talk about treatments and cures. When we call them traits, the language then becomes understanding and support. Understanding and support are the best foundation from which to make parenting decisions about how to best help a kid with a lot of support needs.

Autistic Special Interests – Info and Support for Families

All about autistic special interests and how parents can support their kid who has them.

Autistic Special Interests are narrow, but deep and passionate, interests in topics or subjects. What do they mean for families of autistic kids?

What are autistic special interests?

While many people are very passionate about something, an Autistic Special Interest is not just a hobby. It’s something more. If you haven’t experienced this yourself, it’s hard to describe and understand, but anyone who has been enraptured by the hold of a special interest knows this firsthand!

Studies have shown that 75% to 95% of autistic people have special interests, and having these are one of the criteria for knowing someone’s autistic. (informal eval post)

In traditional diagnostic models, these Special Interests (or SpIns) are called “restricted behaviors.” Other terms used include obsessions or fixations.

These words, for many, imply an abnormal or other-ness to having these interests. Since we use the Neurodiversity Model of Autism, we don’t assign a positive or negative value to Special Interests. They just are.

However, as you’ll see later in this post, SpIns can have an amazingly positive affect for autistic kids.

Why do autistic people have special interests?

SpIns are inherent in autistic people. They come naturally, and because they are self-motivated and intrinsic, the ability to concentrate on them and learn massive volumes of information about them is amazing.

Even kids that find it difficult to concentrate on other things like schoolwork will often be able to dedicate an intense amount of time and concentration to their special interests.

These interests are often very important and meaningful to the individual. 

Parents have told us that when their kid talks about their special interest, they become really engaged, enthusiastic, and will often be able to recite many facts from memory. 

Even young children can show complex thought processes and varied communication skills when they’re talking about special interests. In addition, autistic adults describe their special interests mostly in positive ways.

Calming, positive, and interesting, a break or reprieve from other demands…the lived autistic experience is often that special interests are a positive thing in one’s life.

What should I do about my kid’s special interests?

There’s lots of advice for parents of autistic kids out there. Some will say that special interests are too narrow and will “hijack family life.” Others warn that allowing kids to have special interests will cause your kid to throw tantrums.

With even more doom and gloom, some even say that SpIns prevent autistic kids from learning.

These things, when you really think about it, are complete hyperbole – “exaggerated statements or claims not meant to be taken literally.”

All of these negative ways to view someone’s likes and passions are one perspective, and unfortunately one that isn’t helpful in raising a happy, authentic autistic kid.  

Instead of using purposefully negative language, let’s use purposefully neutral language. How can families talk about their autistic kid’s special interests without automatically making it seem like a problem?

Here’s some examples.

  • Autistic kids sometimes love to talk about their special interests….and nothing else.
  • In non-autistic social environments like most schools or daycares, autistic kids can have trouble relating to others due to their intense focus on their SpIn.
  • However, when people meet others who are similarly passionate about their special interest, they can form friendships with them rather quickly!
  • Kids have an amazing capacity to learn about their special interests.

Understanding and Accepting Special Interests

When we’re REAL about someone’s special interests, we can view the situation logically. 

Understanding means that we can make informed decisions.

Accepting means we’ll make confident ones.

When cultivated…when encouraged…when fully participated in…families can help autistics learn so much from their special interests.

It’s not always about the interest itself. It’s also about:

  • Asking questions we’re truly curious about, and then figuring out how to find the answers
  • Fitting new pieces of information into what we already know
  • Solving problems
  • Making sense of complex information
  • Dedication to see something through

Autistic people have often turned their special interests into careers. (Hello, also me, your writer! :))

But even when they don’t turn into careers, here’s what they do for us:

  • Build self confidence
  • Problem solving skills
  • Building expertise
  • Building a community with others who are interested in the same thing

The foundation to build upon your autistic kid’s special interests is already there. Whenever they are, whatever co-occurring conditions or disabilities they have, you can help them cultivate their special interest.

When YOU as their caregiver take interest in their special interest, it shows that you respect them. If they bring you along on their journey alongside it, it shows you they trust you.

Common special interests for autistic kids, adolescents, and teens

There are some common and even stereotypical autistic special interests, but individuals may have extremely specific or unique or quirky interests. Here’s a list of ones we’ve seen in ourselves, friends, colleagues, or on the internet.

  • Animals in general or a specific animal
  • Anime
  • Art, a specific kind of art, art history
  • Bands, musical artists, genres, or groups
  • Books, in general, a specific book or series or author
  • Calligraphy or handwriting
  • Cars or other vehicles such as trucks, heavy machinery
  • Chess, checkers
  • Clothing and fashion
  • Coding, coding languages, web design or app building
  • Collecting items: a specific brand of statuettes, postcards
  • Disney
  • Dungeons and Dragons
  • Sports, a specific sport, sports statistics and facts
  • Photography
  • Maps
  • Math
  • Movies, specific movies
  • Mythology
  • Nature, being outside, hiking, camping, backpacking
  • Plants and gardening
  • Pokemon 
  • Politics
  • Science, a specific subject in science, a research topic
  • Trains
  • TV shows, series
  • Video games, in general or specific games
  • Writing – fiction, nonfiction, stories, poetry

Final Notes

In research conducted by AuEdu, we’ve asked adult autistics what they’ve wanted most from parents. Here’s the two most popular answers to that question:

  • Help building self esteem
  • Understanding social rules and dynamics

Cultivation of special interests does both!

When you as a caregiver are truly interested in helping them with their special interest, they will feel valued, respected, and trusted. Then, when you help them find community (online or offline), they’ll practice social dynamics with like-minded people.

Want more information on how to do this? Check out our online Autism 101 for Families class.

Autistic Stimming Behaviors

Autistic Stimming Behaviors: what families need to know

Stimming behaviors are common in autistic people. Parents and families have many questions when it comes to their autistic kid and stimming:

  • Why does my kid stim?
  • Is stimming bad? Should I stop or redirect stimming?
  • My kid hurts themself when they stim, how can I help them?

This post is about autistic stimming behaviors and lists types of stims. This knowledge can help you better understand your individual kid so you can get answers to questions like the one above.

First, we’re going to address a common misconception that many people have about autistic stimming.

There’s a hypothesis that repetitive stimming behaviors show “disorganized nervous systems,”  and say that stimming is used to block out the world. People who believe this to be true might say to stop stimming. 

While the above CAN be true, it isn’t ALWAYS true. Autistic people stim primarily to self-soothe.

Another idea is that some stimming behaviors that aren’t “normal” in society, such as rocking or flapping your hands, should be controlled so that other people can feel more comfortable. 

We absolutely disagree with this approach. All stimming that isn’t harming oneself or others should be freely allowed and encouraged.

Why do we feel this way? Here’s why:

Reasons why autistic people stim: it’s healthy! 

  • They feel good
  • Calm anxiety
  • Maintain body awareness, create a focus point for physical sensation
  • Focus concentration
  • Soothe sensory overload
  • Soothe strong emotions like stress, nervous, sadness, frustration, anger

Now that we know WHY kids stim, it informs our perspective about what we should do about it.

What are stimming behaviors?

Stimming behaviors are done repeatedly, and often, and usually for the purposes of calming and soothing. 

According to the DSM-5 these are the “repetitive and restrictive” behaviors that make up part of the diagnostic criteria for autism.

Types of Stimming Behaviors

Auditory Stimming

This can include music, sounds, videos, or other ways to make noise. For some, auditory stimming can seem beautiful…but to others, it can seem chaotic.

Oral Stimming

This almost always manifests as chewing on things like clothes, hair, fingers, gum, or anything they can get their hands on.

Tactile Stimming

Stimming this way involves touching things or doing things with your hands.

Vestibular Stimming

Moving around, jumping, spinning, running, and doing other things with your body are ways to do vestibular stimming.

Visual Stimming

Visual senses are stimulated by looking at patterns, artwork, videos, glitter, or other such visual aids.

Vocal / Verbal Stimming

This stimming includes saying words or phrases, singing, repeating things, laughing, yelling/shrieking, making noises, and any number of other loud things with the vocal cords.

List of Stims

This list is by no means complete! All of these, when done in repeatedly and especially in order to soothe or calm oneself, are stimming behaviors.

  • Arranging and rearranging objects like toys
  • Biting hair, pen caps, finger nails
  • Blinking repetitively, quickly, really hard
  • Blowing raspberries, blowing lips
  • Bouncing
  • Buttoning and unbutton, snapping and unsnapping
  • Chanting
  • Clearing throat
  • Clapping
  • Clasping hands
  • Clenching muscles, jaw, buttcheeks
  • Cracking knuckles
  • Dancing, wiggling and writhing around
  • Drummings fingers, hands on thighs
  • Exercising like running, weight lifting, stretching (usually in older children)
  • Eye tracking, peering from the corners of the eyes
  • Feeling textures such as fur, blankets, fuzzy things, shiny things, smooth things
  • Fidgeting with hands, objects, clothing
  • Finger flicking
  • Flossing
  • Gulping
  • Hand flapping
  • Hitting / slapping self in head or on hands
  • Humming
  • Jumping
  • Laughing
  • Licking – self, other people, objects
  • Licking lips
  • Lining up objects very frequently, over and over
  • Listening to the same sound or song over and over again
  • Mirror play: looking into them, pressing hands on them
  • Pacing
  • Playing multiple songs or videos at once
  • Puffing out cheeks
  • Pressing on / pulling on / covering ears, nose, eyes, mouth, stomach, belly button
  • Pulling hair, pulling out hair (on head or other parts of body)
  • Rearranging things, objects
  • Reciting facts, details, dates, names, places, sometimes over and over
  • Repeating words or phrases, sometimes over and over
  • Ripping paper or fabric
  • Rocking the whole body
  • Rubbing hands together
  • Rubbing objects, people, self, textures
  • Scratching fingernails on textures, scratching skin
  • Sighing
  • Shaking whole body or specific body parts
  • Shivering
  • Shuffling cards
  • Skin rubbing
  • Skipping
  • Sniffing people, sniffing animals, sniffing objects
  • Spinning
  • Staring or gazing at objects, such as ceiling fans or lights
  • Tapping toes
  • Tapping on the body, chest, abdomen
  • Throwing things (such as in sports or throwing mom’s favorite knick-knack across the room)
  • Tilting the head from side to side
  • Turning lights on and off while looking at them
  • Twirling hair
  • Twirling around in circles
  • Walking on tiptoes
  • Watching videos, especially the same video or clip over and over
  • Whistling
  • Wringing hands
  • “Zoning out” staring at things, such as rotating objects, fans

Harmful stimming behaviors

  • Biting
  • Excessive rubbing or scratching skin
  • Head banging
  • Picking scabs and sores
  • Punching 
  • Swallowing things

RED FLAG: eating non-food items like paint, this could be signs of pica

While we support the full expression of stimming behaviors, dangerous or harmful behaviors should absolutely be changed.

There are many opinions on how to help kids who stim in this way. Current research and the lived experiences of autistic people overwhelmingly favor non-ABA approaches to solving the need to stim in this way.

Read more below for more information about how AuEdu can support you as you help your kid who struggles with these behaviors.

My kid stims. Does that mean they’re autistic?

Pretty much all autistic people stim. However, stimming alone doesn’t mean you’re autistic.

Generally, autistic people stim for specific reasons, frequently, and repeatedly. In contrast, non-autistic people have fewer stims and stim less frequently..

To see if your kid might be autistic, we recommend AuEdu’s Informal Autism Evaluation Checklist. It’s done easily in your home and is meant to give you info to make your next decisions. Check it out. 

Are autism stimming, Asperger’s stimming, and ADHD stimming the same?

Stimming can be related to Asperger’s syndrome (which is not actually a separate condition but simply autism), ADHD, Rett syndrome, or obsessive-compulsive disorder.

KNOW THIS: Just because a behavior is repetitive doesn’t mean it’s obsessive-compulsive disorder. Obsessive-compulsive disorder is very real and affects children and adults and we shouldn’t describe stimming or other behaviors as that if they aren’t. OCD behaviors can truly get in someone’s way of living. Here’s a resource on obsessive-compulsive disorder and how it’s similar and different than autism.

Do you need help with stimming behaviors?

Our online Autism 101 For Families class has information about good, bad, and ugly stimming, strategies for family members that truly help kids, and more.

We give families of autistic kids the knowledge and resources to make confident, informed decisions. Get on our email list to know when we’re enrolling next.

Autistic Kids and Safety

Here’s knowledge, empowerment, and resources so that you’ll make confident decisions about how to keep your autistic kid safe.

Here’s knowledge, empowerment, and resources so that you’ll make confident decisions about how to keep your autistic kid safe.

For most parents, keeping their child safe is of the utmost importance. Autistic kids sometimes have specific safety considerations.

Autistic kids have been known to elope – disappear, run away. This is frightening when it happens at school or in a public place and you can’t find them. If your kid is nonspeaking, that can further complicate their ability to find their way back to you.

While you hope that nothing ever happens to your kid, a situation as simple as getting lost in a store or as complicated as wandering away at a crowded public place can happen. 

Informing Medical / Emergency Professionals

In this section we’re going to explore some different ways you can alert emergency professionals that your kid is autistic and/or nonspeaking. 

This is important because you want them to know why someone might appear unresponsive or uncooperative.

First we’ll talk about a couple ways that have more CONS than pros, and then ways we recommend trying first.

Autism car window stickers and decals:

  • Emergency professionals are NOT trained to look for these, so they probably won’t even see it
  • Advertising a disabled child on a vehicle presents a safety concern in and of itself (this is a RARE danger, but someone who does want to abduct a child may think a nonverbal one is easier)

Autism T-shirts:

  • Can also be used with intention of avoiding unwanted/unwelcome comments or judgements from others… but do they really make things easier or safer for your kid?
  • Have the same complications as above.

ID card or wallet cards:

  • Can be useful in some places
  • In emergency situations, especially for people of color, reaching for a card or a wallet could be misinterpreted as reaching for weapons and be met with force

Medical alert bracelets for autism (preferred):

  • Some options are recognized by medical professionals!
  • Discreet, can contain necessary identifying information like names and phone numbers without giving information to strangers
  • Can be bracelets, necklaces, or on shoes
  • American Medical ID
  • Alert Me Bands
Autistic kid runs away / elopes / wanders off or gets lost / hides

If a kid runs away, elopes, or hides, they’re running away from something or someone. How can you find this cause and solve the problem?

For kids that just wander off or get lost, it can be as simple as not paying attention to where you are going and not noticing if your parents are following you for one minute or less, or being really curious about something

There are some things that you can do to prevent wandering off. Verbal and nonverbal signals can be made, practiced, and enforced. While you’re working on these skills, though, you need solutions NOW.

Backpack or harness leashes

Backpack leashes and harnesses are one way to make sure you know where your kid is.

There are pros and cons to using a backpack leash. They could give you peace of mind, although a particularly determined child may resist such things. You could fear the judgment of others, or be uncomfortable with the idea yourself.

Here’s a variety of internet articles that talk about the pros and cons of using backpack or harness leashes. Use them to decide what’s best for yourself. (Mostly non-autistic writers) 

GPS Locators

GPS locators for a child’s phone or ones that you can attach to a backpack or clothing can help a kid that has a tendency to run off. Kids tend to be more receptive to using these then they know why you’re using it, and they trust you to use it to keep them safe rather than pushing.

Examples of GPS Locator devices:

Amber Alert GPS system

At the end of the day, safety is sometimes the most important thing, and this is a matter where you must put your foot down even if they resist this control. Safety is the most important. 

Conclusion

Our online Autism 101 For Families class has a lot more detailed information about how to keep autistic kids safe.

  • How to talk to your kid about safety situations, talking to emergency services, what to do in emergency situations
  • Getting used to using child seats, seat belts, and other safety tools
  • Verbal and nonverbal signals to encourage independence in growing kids while still following safety rule
  • How to disclose autism diagnosis: to who and in what situations
  • Creating a safety plan with your family

If you want more information on our online Autism 101 For Families class – and how to keep autistic kids safe – read this post on our blog.