The Autism Spectrum According to Autistic People

The Autism Spectrum
According to Autistic People

Autism neurodiversity
Autism neurodiversity

The Music Media Kit from NeuroClastic

Have you seen, heard about, or do you plan to see Sia’s film, Music?
Learn more about Autism from Actually Autistic People here.

The media kit

Learn
from
Autistics

Whether you’ve seen the movie, you plan to see the movie, you’ve seen the trailers, or you’re just curious to learn more about Autistic people, you’ve come to the right place!

The Music Media Kit is filled with opportunities for you to learn about issues referenced in the film. But don’t worry, there are no spoilers here! In fact, we only briefly mention the film. This site isn’t about Music, but about Autistic people and their lived experiences. Over the next few days, we will be adding to this media kit with more information and resources. Stay tuned!

Below are some of the topics we will discuss:

Autistic Culture

The #ActuallyAutistic community is vibrant and active. Learn about language, hashtags, and community preferences.

Communication

Whether it's spoken, written, signed, or via an AAC device, Autistic communication needs to be understood.

Communication Rights

The character, Music, is a Nonspeaking Autistic person. Many Nonspeakers do not have access to the types of communication they need.

Meltdowns

Music experienced a few meltdowns in the movie. What exactly is a meltdown, why do they happen, and how to support someone through a meltdown.

Addiction

In the film, Zu, the protagonist, is trying to recover from addiction. While it is not often discussed, Autistic people can be especially vulnerable to addiction.

NeuroDiversity

NeuroDiversity is a concept that sees autism, ADHD, dyslexia, and other conditions as natural genetic variants and not as diseases or disorders.

Helful & Harmful Organizations

Sia announced that she had listened to the wrong people. Learn about the orgs doing good work and those causing harm.

Intersectional Identity

BIPoC (Black, Indigenous, and people of color), LGBTQ+, Deaf, Blind, Nonspeaking, and other Autistic identities are under-represented.

... & More!

Learn about stimming, restraint, found families, inner worlds, how to be an ally to Autistics, how to know if you might be Autistic, & more!

“Simply looking at me gives you exactly zero information about who I am. If you saw me at the store, you would see my stimmy hands and hear my scripts and think I am stupid. If you actually got to know me, you would realize I am a snarky, smart teenager operating a body of a fool. My brain and body don’t talk well to each other. It is like they run different operating systems. The idea that people can be mentally competent but struggle to control their body is completely normal when we talk about someone who gets injured or has a stroke. This is not true when people think about autism. Apraxia does not discriminate, so neither should we when we assign the possibility of intelligence to humans.”

Inner Worlds - "From Up Here" by Tito Rajarshi Mukhopadhyay

In the film, Music often escapes to an inner world– a concept familiar to many Autistics. Read this exclusive from Nonspeaking author Tito Mukhopadhyay about his internal experience in the space outside the lines society draws for itself.

Exploring the Inner Worlds of Autistic Minds

We asked the Autistic community if they have inner worlds or engage in internal conversations. Overwhelmingly, they do. This article walks through the inner worlds of Autistics and explores why they are a necessary function of survival for many.

Stimming: What it is & why we do it

Autistic people move and fidget and make noises, or we listen to the same songs over and over. Some of us hum, some rock, some love to jump and spin, some get lost staring at sparkling things or moving water. Maxfield Sparrow discusses types of stims and why we do them.

Here's Why Autistics Should Stim Out Loud

Lauren Melissa explores the moment she was shamed out of stimming as an expression of joy and how she got her joy back in this beautiful memoir about shame, difference, isolation, misdiagnosis, and then finding and owning self-acceptance.

Why does this happen? A Music FAQ with the Autistic OT

These are some questions that you may have had about the character, Music, and things that happened in the movie. Sarah Selvaggi-Hernandez, also known as The Autistic OT (occupational therapist), answers some of your questions about why Music– or an Autistic person– may do some of the things you saw in the film or trailers for the film.

I remember a trip to a festival in Hartford called EnvisionFest.  It was filled with art, lifestyle, culture, music, technology and, best of all, FOOD TRUCKS.  I’ve always been drawn to these type of events.  I am autistic and will definitely struggle, but the dysregulated impulse-purchases of jewelry, passion project crafts, and fried food are so worth the risk.

Autistic people have to balance their fun out with strategies to stay regulated, and sometimes that is not possible– even when we are having fun.

At a certain point at EnvisionFest, I hit a threshold. Everything around me was moving too fast, and I started worrying that I would lose my son in the crowd. Worrying is an understatement– I panicked. I was at the threshold of a meltdown.

Now that I’m an adult and understand what was happening, I was able to tell my spouse, “I need to go.” Luckily, he knew what to do already. 

In the movie, Zu doesn’t know how to support someone through a meltdown, but my family has been here before– and that happens to be my specialty as an OT! 

When things are too loud, there’s too much movement, and too much information from the environment to process, it can become overwhelming, even when you’re having a good time. It’s like being tickled– that is not fun for very long, even if we are laughing. It is too much sensory input at once.

If you think about it, Music was communicating something that is familiar to all of us! You have probably used a GIF recently to show you already understand this one.

Have you ever been frustrated with your homework and hit your head on the desk or with your books? Ever hear a really bad joke or forget something important and smack yourself in the forehead? Or get really angry and punch a wall?

We all think of doing these things– even if they will hurt– when we are overwhelmed. We might smack our faces to help us “snap out of it” if we feel like we are losing our composure.

That’s an instinct people have because they are trying to help their brain “snap out” of dysregulation. Sometimes a jarring, painful, or startling sensation can help us to calm down because our brain focuses on the feeling of that intense sensation so that we can have a point of focus.

Other times, they hit their head because there are lots of joints in your skull and it feels good to put pressure on them.  Sometimes it is purely meant to communicate that over-stimulation is  crossing a dangerous threshold for them.

Since Music was Nonspeaking, she may have not had the communication access she needed to communicate that she needed a break. This may have been the only communication that she had available to express that she needed time, space, something to drink, or to just rest for a moment.

We will talk more about that soon.

Restraint is a very difficult topic in the disability community because it takes away our bodily autonomy and choices, which is too common for Autistic people.  

The first reason this is a big deal is that it is incredibly triggering for autistic people to see restraints because so many have experienced them first-hand.  To be feeling as much terror and helplessness as someone feels during a meltdown is already traumatic, but adding a restraint to that can be so traumatic that it is deadly. Some people even die from what is called a catecholamine rush, or just having so much adrenaline that it can stop the heart or cause seizures.

Second, the type of restraint was called a prone restraint, where the person is held face down or against a hard surface (like a table or wall). Put bluntly, these restraints kill.  It restricts airways and head movements and, often, there is someone laying on the back of the person to keep them controlled. 

Autistic people often have hypermobility and connective tissue disorders like Ehlers Danlos (which Sia also has), which means their connective tissues are loose. For these people, even seemingly small amounts of pressure can collapse a person’s rib cage and cause serious or fatal injuries to internal organs. 

It can also cause incredible damage to their spine.

Third, the disability community is fully against the use of prone restraint and is rallying hard to have these risks formally acknowledged.  In a high-profile film, especially if it looks like a harmless “bear hug,” can make these dangerous practices seem normal or how to deal with meltdowns. 

Parents, caregivers, and professionals may not be aware of the dangers associated and therefore see the scene in the movie as an appropriate course of action.  Simply put, it is never appropriate. Parents have even accidentally restrained their very loved children to death not realizing the danger involved.

You can learn more about that from my full article.

The safest way to manage a meltdown is to learn how to avoid them by learning about your or your loved one’s sensory profile and what they need to stay regulated. It is best to help Autistic people learn how to recognize their sensory needs and give them tools to communicate those needs effectively.

But, no matter how well you accommodate someone or how great they are at self-advocacy, sometimes meltdowns happen anyway. In that case, you do three things:

  1. Reduce stimuli,
  2. reduce demands, &
  3. offer sensory-based supports. 


Reduce stimuli:
leave environments in order to reduce the amount of noise, movement, sound, touch, and smell a person has to process. Being watched or the fear of social consequences can make it harder to survive a meltdown. Try to get some privacy.

Reduce demands: Having to be on a schedule, to be socially appropriate for the environment even when distressed, having to tolerate heat or cold, being expected to be still or quiet, or being asked to finish chores or work are all demands. Reduce any expectations and just try to support the person in a way that allows them to process the way they need to process to regulate their emotions and sensory systems.

Offer sensory-based supports: you need to know a person’s sensory needs in advance to be able to offer them supports. Some basic troubleshooting can be helpful for most people:
Are they hungry?
Do their feet hurt?
Are they over-heated?
Dizzy?

Water, a comfortable temperature, food, a bathroom break, some comforting scents, a soft or sparkling object to fidget with, or headphones with a pre-made track list of familiar and calming music are good strategies for many people, but you can always work with an occupational therapist to learn what sensory strategies are best for an individual.

There’s no one way to help an autistic meltdown, but finding ways to incorporate these strategies in planned and/or responsive ways can help make the day more regulated and happy.

Music likely has a low auditory threshold. This means that it only takes a little bit of sound for Music to become aware that sound is present. 

For example, Music may notice the hum of electric gadgets or hear an alarm that no one else does because she is more sensitive to sound.

Ear defenders are a great way to avoid being overstimulated by sound, especially in places that might be a little noisier (work, school, parties, community outings, etc.) without becoming dysregulated.

It is super frustrating when we want to go places, like a fair, but struggle because of all the noises assaulting our auditory system. By wearing ear defenders, or playing a familiar track through our headphones, we minimize the unfamiliar sounds we have to work so hard to process. We can have more energy and spend more time doing activities we love if we take steps to manage our sensory systems.

There could be a lot of reasons an Autistic person walks in a way that is different.

She could have dyspraxia or apraxia, which are ways to describe difficulty with coordinating and planning motor movements. Since she is also Nonspeaking, Music may be apraxic.

Apraxia happens when the brain has difficulty collaborating with the body to get it to perform the tasks we want to engage. Someone can have apraxia of speech, which you’ll learn more about from the next FAQ, or they could have motor apraxia and have difficulty coordinating their body movements. Many autistic people have degrees of apraxia that can range from struggling to hold small objects to not being able to prevent the body from getting up and leaving the room.

Music could walk differently because she had a reflex that never quite integrated in early childhood. Joint hypermobility and connective tissue disorders, like Ehlers Danlos, are very common in Autistic people. This may mean that they have spinal, hip, knee, or ankle joints that are painful and require the person to distribute their weight differently. 

Or, Music may just like the sensation of her head moving back and forth, side to side, and creating that sensory movement might be helping her to stay calm and regulated.

Sia removed the restraints from her film and issued a warning. The rest of the world needs to follow suit. Deadly restraints and cruel seclusion have been a harrowing stain on the legacy of disability rights. The time to end these barbaric practices is now.

Just hours before Sia promised to remove the restraint scenes from Music, Stacia Langley, Max Benson’s mom, wrote to Sia about the day Max was killed by his teachers who held him in a prone restraint. She asked that Sia remove the restraint scenes, and Sia did.

10 Things You Should Know About Apraxia According to an Apraxic Nonspeaker

Philip Reyes is a teen Nonspeaker who learned to spell to communicate after traditional methods of AAC or therapies were not helfpul because of apraxia. Much like Ebo had to say about Music, Philip understood everything people said to him; however, he was unable to return that communication without the right kind of communication access.

Apraxic Autistic Perspectives on Representation

With the help of the International Association of Spelling to Communicate, we asked Nonspeaking Autistic young people what they would like for the world to know about their lived experiences, thoughts, inner lives, and what they wish you understood about them.

Why does this happen? A Communication FAQ with the Therapist NeuroDiversity Collective

Julie Roberts, speech and language pathologist and CEO of the Therapist NeuroDiversity Collective, answers questions you might have about Autistic communication after watching the movie, Music.

The character is communicating with echolalia, a valid, functional form of Autistic and other neurodivergent communication. 

Echolalia is not a behavior, and it should not be “extinguished” through therapy. Echolalia is the immediate or delayed repetition of language. Echolalic communication consists of strings of language that are repeated exactly as they were learned. The message is repeated literally as it was learned, but it is not to be taken literally. 

Example: Mother routinely asks child, “Do you want juice?”

The echolalic child may say “You want juice” when requesting juice. 

Mother clearly understands that the child wants juice, so they give the child the juice (rather than ignoring them, or insisting they ask for the juice correctly). Mother can then model, “I want juice,” either through spoken language or on an AAC device.

Echolalia can also sound like this:
-Repeated lines from songs, either sung or spoken
-Repeated lines from favorite videos or television shows
-Longer repeated passages from books, videos, or movies

Ecolalia is a natural part of the language development progression for half of all children (Peters 1973, 2002). Some children develop their language by learning and memorizing entire sentences or passages of speech and then repeating them to convey their message (echolalia). With time, they learn to break down that echolalia into individual words. Finally, this type of language learner moves on to recombining those words into unique messages.

Autistic children often take longer to develop self-generated sentence structures, or they may continue to be echolalic communicators throughout their lives. Because echolalia is a valid form of communication, it should be honored as such. 

I have not seen the movie, and the clips I was able to find don’t really don’t show a scene with Music’s voice. 

I was able to see that she is using an AAC device to communicate. Autistic people sometimes have great difficulty with producing spoken language for many reasons.

One of those reasons is Apraxia.

In layman’s terms, axpraxia is a neurological disorder where the person has difficulty directing or coordinating accurate motor movements when speaking. The person knows what they want to say, but their mouth cannot perform the movements to make the sounds. Depending on the type of apraxia, this may mean that the person’s voice sounds different, or they may have trouble controlling the volume and speed of their voice.

Access to robust Augmentative and Alternative Communication (AAC) with core language can help an apraxic individual communicate effectively and reduce the frustration of not being able to be understood. 

Another reason some Autistic people may not speak, or only speak during certain times, or in certain situations  is selective mutism.

Sometimes the act of speech is anxiety-producing, exhausting, or overwhelming for Autistic people. Selective mutism may also occur following a trauma.

Robust AAC with core language or typed communication is a valid alternative to spoken communication.

Speech production is not a superior form of communication, nor does the lack of spoken language indicate that someone is intellectually disabled. 

Some reasons Music may not speak are addressed in your earlier question – possible apraxia or selective mutism, or even dysarthria (a motor speech disorder in which the muscles that are used to produce speech are damaged, paralyzed, or weakened).

Some Autistic people use AAC or typed communication as a supplement to spoken communication.

The inability to produce spoken language does not equate with lack of intelligence. Even in 2021, many people, including education and medical professionals, continue to equate ‘non-speaking’ with intellectual disability.

Non-speaking people communicate in other ways. If they don’t have a way to effectively communicate with language, sometimes they have to resort to behaviors to communicate.

It is a dedicated speech-generating device with a robust language system  (SGD) and is commonly referred to as an “AAC device.” SGDs are defined by the Centers for Medicare and Medicaid Services as, “durable medical equipment that provides an individual who has a severe speech impairment with the ability to meet his or her functional speaking needs.”

They are life-changing for non-speaking people, as well as for the people who love them. 

I haven’t seen the movie, but it’s possible that Felix could be exhibiting selective mutism, or he may become overwhelmed and his language sometimes shuts down due to sensory overload.  

I wouldn’t panic, but I would ask my pediatrician for a referral to a licensed speech-language pathologist. An SLP is uniquely educated, trained, and qualified to evaluate, diagnose, and provide therapy for communication delays and difficulties.

SLPs take distinctive graduate coursework unique to their scope of practice, in areas including: Voice Disorders, Stuttering, Motor Speech Disorders, Neurogenic Communication Disorders, Dysphagia, Language Acquisition, Articulation Disorders, Anatomy and Physiology of Speech and Hearing, Childhood Apraxia of Speech, Articulation and Phonological Disorders, Dysphagia in Public Schools, Dysphagia in Infancy, Medical terminology and scope of practice of the medical SLP, Dementia, Pulmonary Issues, and Tracheostomy and Ventilators, Pediatric Feeding, Speech Science: Anatomy, physiology and functional organization of speech. Mechanisms of normal speech production and perception with applications to the clinical setting.

It’s important for parents to understand the difference between a licensed speech-language pathologist and other therapists who may claim to provide speech and language therapy in conjunction with ABA therapy. 

Neither BCBAs (ABA therapists), nor the unskilled, unlicensed RBTs under their supervision are uniquely trained in communication disorders, language acquisition or AAC, similarly to SLPs.

In fact, if an untrained therapist is providing therapy that is actually within the scope of practice of the SLP, they could possible cause significant emotional and physical harm to your child because they don’t have the educational background and training to determine whether your child’s speech delay may be related to a motor issue like apraxia, or if your child has other accompanying anatomy and physiology issues that are contributing to delayed speech production. 

In the U.S., your local public school will also conduct speech and language evaluations for free to children exhibiting language delays, starting at age 36 months.

If your child is language delayed, or if they are nonspeakers altogether, it’s always important to honor and respond to the communication they are exhibiting (pointing, grabbing for items, producing the word incorrectly, or saying another word altogether).

Ignoring their communication attempts or demanding that they communicate in a certain manner could cause trauma, frustration, and even long-lasting emotional harm. Presume competence, respond, and model the language.  And remember, AAC is always recommended to supplement communication delays. There are no learner prerequisites to AAC.

Spellers and Allies Advocacy Network: Black Lives Matter

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