Tag: inclusion

“The wolf of Wall Street” explains why autistic people are often traumatized

Featured by eringarciabooks, posted in health, psychology, special needs, Uncategorized

“So to sum it up, human communication is 45% tonality, 45%body language, and 10% are the actual words….90% of the time we’re communicating without actually speaking.”

– Jordan Belfort, The Way of the Wolf

My true passion is helping the ignorant understand what autism is so that our world can be safer and more inclusive. Sometimes it feels impossible to address all the factors that make life so difficult for autistic people.

But one book in particular stood out to help me in my mission: The Way of the Wolf by Jordan Belfort (the guy played by Leonardo De Caprio in 2013’s award-winning The Wolf of Wall Street).

Belfort breaks down how much language and body language affects how a person is perceived. If you know anything about Belfort; he’s blunt, clear, and often, right in his estimations. He is not just a natural-born salesman; he’s studied neurology, the impact of meditation, and linguistics. In chapter four describes the average person’s perception on a first encounter:

“You have about four seconds until someone rips you apart, judges you, and then puts you back together in the way that they perceive you.”

This is the autistic experience: to get ripped apart, judged, then put back together in the way (often the ignorant way) someone perceives them.

Because most people have a narrow understanding of what autism is, when an uninformed person sees an autistic person that exists outside of their subconscious expectation, they tend to label the autistic person in question as some variation of “weird.”

In fact, Belfort discusses this in his book, calling the kid at school who talks oddly or moves in an unusual manner as one with “cooties” and how the natural desire is to get away from them. Ironically, he also notes that these kids tend to be exceptional later on because of how they think. But he drops the thought right there, which is a darn shame. 

In Belfort’s experience, social success is about the majority’s perception, or that is to say those who are in the position of social power to choose or not choose the person in question. I don’t think he is wrong.

But I’m here because most of us don’t know what we’re looking at when we see autism in real life and so we unwittingly marginalize autistic people. 

Most of us don’t know why this is so important unless you are personally connected to an autistic person. But some facts to help you care: 87% of autistic adults are unemployed, they are more than twice as likely to be detained by police, to be sexually assaulted, and to die by suicide.

If you have an autistic child like I do, I would love it if you keep reading on, so we have a shot at reducing these statistics.

I’ve no doubt that every single person wants to help the autistic community thrive. Understanding what we’re looking at when we see an autistic person in the moment is the only way to not make negative split-second mental judgments when we see an autistic person in real life.

While a wide smattering of traits are needed to qualify a person as autistic, and while there are an infinite combination of traits an autistic person can have, there are some commonalities amongst autistic people that are important to know.

Most autistic people have a heightened sensory profile, which means sensations like smell, taste, sound, touch, etc. are usually either experienced at a significantly higher or lower rate than a non-autistic, or allistic person. 

In addition, many autistic people exist in space in a noticeably different way than an allistic person. Sometimes their posture is markedly different (e.g. commonly known as “t-rex arms” when a person holds their arms bent at the elbow and close to their sides).

Sometimes you can notice a difference in gait, often appearing “clumsy” or noticeably labored.

Sometimes it’s a pitch of voice that’s a bit too loud, too high, too flat…whatever it is…it’s considered different (and often that means worse).

Sometimes the facial expressions of an autistic person does not match the situation at hand (e.g. not smiling in an exciting situation). This often makes allistic people uncomfortable, sometimes causing them to judge the autistic person as not empathetic or intellectually disabled because of their facial expressions.

I write this out because I want to stop this misunderstanding. Autism does not mean either of those things, but it is a common ignorant stereotype.

Belfort goes on to say that how you hold your body, how you appear, how your face looks are profoundly important for social situations. This is the traumatizing part for autistic people: the way they naturally exist is often considered “wrong”. Even if an autistic person verbally explains themselves when questioned, it’s often considered suspicious or weird. He goes on to remind the reader that this is more important than being able to explain yourself: 

“The simple fact is that the right words don’t exist. No combination of words are profound enough and stealthy enough to sneak past the logic center of your prospect’s mind and create an emotional reaction that goes straight to their gut. For it’s there, in your prospect’s gut l, where first impressions get formed in fractions of a second, and they’ll guide them until you prove them wrong. So, if your words won’t do it, where do you turn?”

Belfort’s ability to explain this nuance of socialization pinpoints why autistic people have such traumatic social interactions on a regular basis. 

He goes on to explain how tone of voice, the way a person dresses, their appearance and scent, and body body language impact a person:

“The answer is simple: your tone of voice. Specifically, how you say what you say has a profound impact on how it’s perceived. And for that matter, how YOU are perceived. And not just during those first four seconds, but throughout the entire conversation as well. You see after millions of years of evolution, the human ear has become so adept at recognizing tonal shifts that even the slightest one can have a dramatic impact on a word or phrase.”

So how does an autistic person cope? What we end up getting is one of three things:

  1. Some will want to “help” autistic people, which usually means teaching the autistic person to be less authentically themselves and more “socially acceptable” by trying to train their movements, their voice, everything that can possibly be altered (usually this is under the umbrella of ABA therapy). This puts the autistic person in the position to attempt to memorize and act in a way that people like Belfort say is allowed. The result of this “help” is that some autistic people master this mimicry, which almost always leaves them depleted of their true self. 
  1. Or despite their best efforts, they don’t quite get it right, and people can tell they’re “faking”, leading to judgment and scorn or ridicule. They will keep trying to please others despite their internal compass begging them not to. This often leads to serious burn out, and is likely a key reason autistic people are more likely to suffer from debilitating depression and be sexually assaulted.
  1. Or the autistic person realizes the way they are isn’t considered acceptable, but they continue to exist as authentic themselves, often gambling that they’ll find someone who will accept them for who they are, realizing they cannot ever win at the game Belfort so meticulously explains. 

This post is intended to help autistic people be accepted for who they truly are, without shame or judgment.

So what can you do right now? If you are interacting with a person who perhaps isn’t making “the right” amount of eye contact, or is moving in an unusual way, or their tone of voice “seems off”, consider that they might be autistic instead of judging. Trust that they’re not a suspicious person, even if they’re not acting in a way you expect. Meet them with love and grace. See what happens.

Bonus! Even if the person is not autistic, this manner of interacting still works well! It’s miraculous!

I would love to know how this goes! Send me a note here!

P.S.- I should also point out that while Belfort was exceptionally gifted at sales and making money, he also was indicted for money laundering and securities fraud. He eventually pled guilty to fraud for his pump-and-dump schemes which, according to some estimations, cost his investors upwards of $200 million. For his crimes, he spent a little less than two years in prison. 

And why do I share this? Because even though he is a criminal, I can still learn from him. And also, a criminal knows how to get things from his victims. Maybe his perception isn’t completely right and maybe we should question this manner of thinking that negatively impacts so many.

Nutrition and Autism: It’s Not Exactly What We Think

Featured by eringarciabooks, posted in autism, health, psychology, special needs

When people say that they can “heal my child’s autism” with their special vitamins, I react differently than when my son was first diagnosed.

At first, I desperately wanted to get rid of his autism. I hate admitting this, but I’ve tried vitamins. We ate pretty “clean”. and part of my motivation was to heal him.

I thought this was because autism was always described as a horrible thing that would devastate our family unit. Autism was described in “red flags” and “symptoms” and I thought my boy would be “trapped in his own mind”, because that’s how it was explained on tv by authority figures.

I wanted him to “get better”, because the way autism was always explained to me, I thought it was a disease to be cured.

Once I learned from autistic people about what autism actually is, I realized my errors. At one point I became enraged at people who tried to take everything that makes my child so perfect and tell me they can “fix it”.

But now when I hear a person claim they’ve “healed autism” through nutrition, it doesn’t bother me. It doesn’t offend me. But I wonder what they really mean.

First thing’s first. There’s no way around it: what we consume affects every aspect of our being. Nutrition is the very foundation of health and healing.

And yet, the word “healing” is often conflated with curing, and many of these same aforementioned people attempt to “cure” autism with vitamins.

As if a neurotype needs “curing”. 

I’ve also noticed that these same people who believe in curing a neurotype have a very narrow understanding of what autism is. Many times they will make claims about “severe” autism. So before we move on, we need to have the same working definition of what autism is.

Autism is diagnosed when a person meets a “smattering” (that is the official word used) of identifiable markers. A person cannot be “more” or “less” autistic: if you meet the smattering of criteria, you are. Can you have “autistic qualities” and not be autistic? Of course, because autistic traits are human traits.

But autism is a spectrum and autistic people have a wide variety of support needs, some with less, others with more, and sometimes these needs change with time.

Additionally, some autistic people have co-occurring conditions, which are often conflated with autism.

For example, autism is not an intellectual disability, but some autistic people are intellectually disabled (just as some neurotypical people are intellectually disabled).

In an attempt to keep this brief, the most common markers of autism are (but not limited to):

1. an obviously different sensory profile in which sensitivities to things like light/sound/pressure on the body are markedly different compared to a neurotypical person. Often this intense sensory input is dealt with by stimming, an important regulatory behavior that most people do, but autistic people do more often and often in more noticeable ways. Here is my book that simply explains what stimming is.

2. a different manner of speech and/or communicating compared to a neurotypical person.

If you noticed that both indicators of autism relate to not being neurotypical, you’re very observant. We will discuss the implications of this another time.

“Curing” an autistic person means to extinguish their very existence. If I were to approach you and say, “there is something wrong with your mind. It doesn’t work right. Every single way you interpret information in your surroundings is wrong and backwards, but trust me, I can fix you. Here take this medicine.”

It’s offensive and not necessary. 

Curing how your brain interprets information implies that there is something wrong with it in the first place. 

A judgmental approach to autism is common, especially in holistic communities, which I proudly am a part of (usually). Changing my diet has profoundly impacted how I exist. I learned how to heal my gut and improve my health through functional medicine and nutrition.

Holistic and functional medicine practitioners lose an entire demographic of potential clients because they ignorantly presume that all autistic people and their families must want the unique neurology of autism extinguished.

And many times these same people believe we need to cure autism because when they think of autism, they are talking about a very particular type of autistic person who has significant obvious support needs. They do not understand that you cannot “spot” all autistic person in the general public.

The same circles that significantly improved my health also call autism an “epidemic”, which implies it is a disease to be eradicated. 

While it is true that autism rates are “on the rise”, the exact reason for this has not been determined yet. These same “holistic” people will claim it is from exposure to heavy metals and toxins in our food.

But an important reason, (one that these people rarely acknowledge), is that autism is more diagnosed today than it was even 10 years ago. When people were previously called “quirky”, “different”, “odd”, “troublesome”, we now have an understanding that there are different styles of communicating, and that autistic people raised in significantly supportive and accepting homes can thrive.

In particular BIPOC and females are now being diagnosed more than ever, whereas before, these people were often hidden from society or brutalized in order to make them conform. Sadly, this was often done in the name of “safety”. If you want to read about this, please do yourself a favor and read In A Different Key.

But back to food and autism. Sound nutrition is paramount to everyone’s health. When we eat better and consume consciously, our rates of depression, anxiety, and chronic inflammation plummet for everyone.

Neurotypical people would do well to recognize that using language to “cure” someone’s neurotype is harmful. 

And yet it must be said that many autistic people also do not consume high quality food. Why? Many autistic people struggle with nutrition because food is an intense sensory experience for them.

For example, no two berries will taste exactly the same and each one can be interpreted as a shock to the palate (for some people).

Sometimes the smell or sight of a food triggers a gag reflex (because remember how I said a hallmark of autism is a heightened sensory profile?).

Is this example true for all autistic people? No.

Do some neurotypical people have heightened senses like smell, sight, or taste. Yep.

Do sometimes people think that they’re just picky and difficult but when they learn about the hallmarks of autism they realize they could be on the spectrum but never pursue it has been explained to them as though it is a horrible disease that needs to be cured? You betchya.

Processed foods are uniform and often considered “safe” by autistic people because it will not shock their gustatory sense.

There are ways to help autistic people become comfortable with diverse food, but it often takes time, resources and education.

Socio-economically disadvantaged families are unable to do this, and often opt for processed foods in order to feed their child. Because believe it or not, autistic people like my child will simply not eat rather than eat something appalling to their palate. They can do this indefinitely. It is not the same thing as a “picky” eater.

Wealthy people often are the ones who “heal” their autistic children, but what they really mean is that their child’s gut biome is healthy and thriving due to the nutrition provided. When they say the “behaviors of autism” are reduced or eradicated, it likely means their child does not have an inflamed nervous system and likely, their child has adeptly learned how to mask publicly so they do not appear autistic. Because remember, their parent has spent a lot of time and money “curing it”.

It should be noted that these wealthy people also often have insurance and provide early intervention like speech and occupational therapy, allowing their child to communicate and perform daily living tasks which enhance their self-worth and developmental progress.

We don’t need to shame people for these things, but I do believe we can do better for all autistic people who just want to live happy and healthy lives.

We can hold these two truths simultaneously: our food chain (especially in America) is profoundly damaged, and still make space for the fact that there are a variety of neurotypes and ways people process their environmental and emotional input. 

If you’re interested in me doing a deeper dive into food, gut healing, and autism, please drop a comment below!

What Should I Do If My Child Is Diagnosed with Autism?

by eringarciabooks, posted in autism, health, psychology, special needs, Uncategorized

When I learned my child was autistic, I was afraid. 

I was a first time parent and was already worried I’m screwing up. 

This news sent me over the edge. 

I couldn’t even explain what autism meant. I felt scared and helpless. 

Autism always seemed like something bad. That’s how it was presented to me. Words like “suspicious”, “symptoms”, and “red flags” were used to describe my child. 

I didn’t realize the impact until years later. That’s when I wrote this book for you. I don’t want any person to feel the way I felt.

In hindsight I can see it was not autism that was the problem: it was how much I didn’t know.

It was how poorly autism was explained to me. Autism was always presented like some lurking, scary monster. It took personalities away. It could come without you ever knowing about it. It was something to be avoided at all costs.

My child was happy and thriving. He’s hilarious. ‘There’s no way it’s autism,” I used to think. But he was different from other kids his age. And his 17-month younger sister. 

It had nothing to do with my parenting. 

It seemed like no matter what I did, certain things were just different.

He responded unlike other kids.

His language was unlike other kids.

His movement was unlike other kids.

No matter what I did he would always run back and forth. He would flap his hands. He would squish himself beneath the cushions of the couch. Food was often difficult for him and not in a “picky toddler” way. It was like it hurt when he tried certain food.

I was concerned and confused. Even though it was different, my child was amazing just the way he was. 

When I finally learned about stimming, all of his behaviors began to make sense. Stimming was a way he was soothing himself and releasing pent up energy.

I realized what his autism means for my family. 

I was no longer afraid! 

I also realized I stim quite a bit. Most of us do!

Stimming is a sign that a person is managing things like: noises, lights, food, changes in routines, learning exciting bits of information, having a big feeling, etc. A person stims with their body. Stimming might look like: rocking, hand flapping, repeating a word, galloping, pacing, etc. Most people stim.

When we discover a stim’s purpose, we help people thrive. 

That’s what happened for us and it can happen for you too.

Sometimes you need to be a detective to understand a stim’s meaning. 

That’s why the book I wrote is called The Case of Sensational Stims. 

The characters Joey and Elise teach what stimming is. This book will help you understand what stims are and why they’re important.

My child is amazing just the way he is. His autism is an important part of who he is. We don’t need to fear autism. We don’t need to overcome it. 

We embrace who he is entirely.  Including his autistic mind.

Understanding stimming allowed us to do that. 

You’re here because you want to support your autistic loved one. Maybe you don’t know where to start. This book is for you.

This book:

  • Explains autism in a children’s story
  • Models how to support disabled people
  • Includes a glossary of important terms
  • Will help you support the autistic person in your life
  • Is a great place to start learning

Even if you don’t get the book, please do not be afraid of what autism means for your family. Honor your loved one’s sensory needs, and watch them thrive!

Thank you for being here! Follow this blog or my Instagram @sensationalstims to get free support for your autistic love one!

Difficult Behaviors, Autism, and Trauma

by eringarciabooks, posted in autism, psychology, special needs

If your child is struggling at home or at school in significant ways that are impeding their personal growth, I hope you read this post. 

Many autistic people’s behaviors are misunderstood. I hope this post helps us understand what we are looking at! We do not need to fear autism, we need to learn how to support autistic people.

Typical trauma responses to situations perceived as dangerous are: fight, flight, freeze, and fawn. 

When the fear center of the brain is activated, higher level thoughts are unable to be accessed. 

The purpose of this post is to help anyone who works with an autsitic person understand how to support a person whose fear center is activated and a trauma response is happening.

Every human has a genetic predisposition to one of these four responses. Here’s what this means for autistic people:

Autistic people process situations differently, compared to neurotypical people (that’s why they’re diagnosed as autistic!). They process things so differently that it is disabling. 

Autistic people are frequently placed in situations perceived as dangerous because of their unique processing system.

Prolonged time in stressful environments becomes dangerous; the autistic person knows it means pain. 

For example, autistic people usually have a unique sensory profile that makes a typical situation extremely stressful. Often things like lights/temperature/sound can be so overstimulating that it registers as pain or discomfort. 

Trauma responses will be triggered in these situations, and we are all hardwired to react in one of four ways. 

Fawn=trying to please someone who causes discomfort as a means of trying to avoid conflict.

Flight= trying to escape/elope to avoid the perceived danger.

Freeze= the inability to move when danger is present.

Fight= facing the perceived threat aggressively.

Autistic children in school who have a fawn or freeze response generally are perceived as “good kids” and will be described by their teachers as “wonderful students. I can’t imagine why they fall apart at home!”

Autistic children who have a flight response are often considered liabilities, and efforts are made to keep them close to the location they’re trying to flee. Yes, even though that location is determined to be dangerous by the autistic person.

Autistic children who fight are considered dangerous and threatening. These are the ones who are often scolded and chided. They are either placed in a separate area so as not to harm others, rather than taught how to regulate and work through situations that are perceived as dangerous. These children are frequently misunderstood and consequently perpetually frustrated. 

This creates a dangerous cycle for both the child and all those who work with him/her. The child learns that the way they respond to danger is “incorrect”, which means that their entire life they will either try to figure out what is wrong with them, or will find everyone else to misunderstand their needs, causing shame, anger, and guilt. 

To avoid these unfortunate, traumatizing situations, we need to understand what fear responses are, and how to help unpack the situation, rather than to just get the child to behave the way we want in the moment.

Frequent exposure to painful situations means danger will be detected.This is true for any human. 

If your child is struggling with one of these trauma responses, you’ll need to determine what their perceived danger is. It is likely something with their senses, and because autistic people, especially young ones, tend to struggle with communication, you will need to look and listen closely to determine the trigger. 

Just because it isn’t triggering to you or the teacher means the situation isn’t for the autistic person. 

Once you do that, you can help your child work through the pain. Provide sensory tools that can help them cope. For example, if it’s very bright, offer them sunglasses. If it’s loud, offer noise canceling headphones. If needed, leave the situation with the child. 

I know some of you are saying, “this is not realistic! I cannot leave every time my child is overwhelmed!” But maybe not every time. Just for right now. Demonstrate to your child you see that they’re in need. Then give them what they need. They will begin to trust you, rather than distrust people who frequently put them in situations perceived as dangerous.

If you find the approach of meeting a child’s needs especially triggering, it would be wise to consider why that is. If your parents taught you that meeting a child’s needs was not “good parenting”, working with a therapist can help you unpack that.

The truth is helping a child, especially a child with sensory processing and communication issues feel validated and understood, creates a happy, healthy adult. 

We do not need to fear autism, we need to learn how to support autistic people!

Thank you for being here. If you found this helpful, please follow this page. If there’s any other things you could use support with, please message me and I can provide resources! 

How Should I Tell My Child They’re Autistic?

by eringarciabooks, posted in Uncategorized

“How should I tell my child they’re autistic?”

-Many concerned parents

I cannot count how many parents have messaged me about this question. It’s so many that keeping track would depress me.

Some parents approach their child’s neurology almost like “the birds and the bees” talk. It feels weird and awkward. But of course, your child’s neurology is not something that should be awkward or a source of fear or shame. Why is it though? I mean, we would never fear telling a child she was diabetic or epileptic- NOT knowing those things causes more issues. The same is true for autism.

Some parents fear telling their child will limit them in some way; almost like uttering this truth will unleash some kind of power over the child. These parents treat sharing their child’s autism diagnosis  like characters in Harry Potter reacted to the name “Voldemort”. 

This kind of makes sense to me. 

Many parents are scared of what autism really means. They don’t know what to do about it, but they know it’s there. 

To call autism by its name somehow gives it more power, maybe? 

And maybe by not calling it by name, a child won’t be so “autistic-y”.

I say that tongue in cheek- but it baffles me how conflicted parents get about this. 

I told my child when he was about 4 because that’s when I first realized he is perfectly fine the way he is. I wished I had told him sooner.  If you know and your child is much older, please do not fret. But take a moment, read the rest of this post, and then tell them!

I started by explaining stimming because that’s how I noticed my child had a different processing system; it was my clue he might be autistic. I didn’t know what stimming was until an autistic adult shared it with me.

Stimming is how a person physically regulates their body when there is a lot of external input. It might be rocking, hand flapping, echolalia, galloping, etc. It explained so much about my child; everything fell into place after that. 

I realized that my son stims a certain way when it’s too loud. He stims differently when he’s excited about something. He stims another way when he is anxious. My son is mostly verbal, but when he is feeling big feelings, he really struggles to articulate his needs. His stims are not random or arbitrary, they are my clue to assist him when he isn’t verbal.

So to answer the question of how to tell your child they’re autistic I say: start with stimming. 

Explain what stimming is to your child (and any of their siblings). I wrote a book about it called The Case of Sensational Stims and it’s on Amazon now. Demonstrate how you stim (because you probably do), but explain that it’s very important for your autistic child because their brain processes information in a particular way. Their particular way has a name.

Their mind is autistic and those who aren’t autistic are called allistic. We all process information a bit differently. No one type is better or worse, they’re just different and we need to honor everyone’s brain (or neurology).

Boom. You did it!

Then… you keep lines of communication open. 

No, you don’t need to talk about it every day, but make sure you say the word autism. There’s not one thing to be ashamed of. Your child was born with a phenomenal mind.   

Ask your child(ren) what autism means to them. Learn from them. Learn with them, Coach them. And remember, autism presents differently in every person. Stims evolve over time. Some things that used to be hard get easier and vice versa. 

The best way to start is to figure out why it feels so uncomfortable for the parent. It’s usually because they don’t know much. Learn from #acutallyautistic people and buy my book on stimming on Amazon. It’s a great way to get started, if I do say so myself. 😉

Understanding Stimming Means Understanding Autism

by eringarciabooks, posted in Uncategorized

If you don’t know what stimming is, you probably don’t understand autism very much. I never really knew what autism was either and I didn’t much care until my child received his diagnosis.

I was so scared about my son’s future after learning he had autism. I had no clue how to actually help him or even make sense of his needs.

What kind of parent doesn’t know how to help their kid?!

Me! I had no clue what to do. But I was that parent! Maybe you are too. That’s why understanding what stimming is matters so much if you want to help your autistic loved one. *Spoiler understanding stimming helps lots of other people, including you!*

Being able to understand stimming takes the fear out of the unknown aspects of autism, at least it did for me.

The Case of Sensational Stims helps parents understand the parts of sensory differences that autistic children don’t have the language to explain.

And it explains stimming so simply, even children understand. It’s on Amazon.

When I learned my child was autistic, I was afraid. I was a first-time parent and was already worried I’m screwing up.

This news sent me over the edge. 

I couldn’t even explain what autism meant. I felt scared and helpless. Autism always seemed like something bad. Words like “suspicious”, “symptoms”, and “red flags” were now being used to describe my child. I was so conflicted. My baby was good. How could he be these bad things?

I didn’t realize the impact of this language until years later. That’s when I wrote this book for you. I don’t want any person to feel the way I felt.

I know now it wasn’t autism that was the problem. It was how much I didn’t know. It was also how poorly autism was explained to me.

Autism was always presented like some lurking, scary monster. It took personalities away. It could come without you ever knowing about it. It was something to be avoided at all costs.

My child was happy and thriving. He’s hilarious. He’s loving. There’s no way it’s autism.

But he responded unlike other kids his age. And his 17-month younger sister. It had nothing to do with my parenting. 

It seemed like no matter what I did, certain things were just different.

If it was very loud he had to get out of the room.

If there were a lot of unexpected changes he cried a lot.

If it was very hot he seemed to overheat.

If it was very cold he didn’t seem to care.

If he got hurt he never cried out. Even when it was clearly painful.

His language was different, but I could understand well enough.

No matter what I did he would always run back and forth. He would flap his hands. He would squish himself beneath the cushions of the couch. 

Some nights he never slept.

Food was often difficult for him and not in a “picky toddler” way. It was like it hurt.

I was concerned and confused. My child was amazing but he was different. 

But when I learned about stimming, all of his behaviors began to make sense. 

I realized what his autism means for my family. 

I was no longer afraid! His sensory differences are autism!

I also realized I stim quite a bit even though I’m not autistic. Most of us do!

Stimming is a sign that a person is managing things like noises, lights, food, learning exciting bits of information, having a big feeling, etc. A person stims with their body. Stimming might look like rocking, hand flapping, repeating a word, galloping, pacing, etc. Most people stim.

When we discover a stim’s purpose, we help people thrive.

That’s what happened for us and it can happen for you too.

Sometimes you need to be a detective to understand a stim’s meaning. 

That’s why the book is called The Case of Sensational Stims. 

Joey and Elise teach what stimming is. This book will help you understand what stims are and why they’re important.

My child is amazing just the way he is. His autism is an important part of who he is. We don’t need to fear autism. We don’t need to overcome it. 

We embrace who he is entirely.  Including his autistic mind.

Understanding stimming allowed us to do that. 

You’re here because you want to support your autistic loved one. Maybe you don’t know where to start. This book is for you.

This book:

  • Explains autism in a children’s story
  • Models how to support disabled people
  • Includes a glossary of important terms
  • Will help you support the autistic person in your life
  • Is a great place to start learning

Become a Better Ally: 23 Things I Wished I Knew About Autism When My Child Was Diagnosed

Featured by eringarciabooks, posted in autism, health, psychology, special needs

June 18 is Autism Pride Day. Autism Pride celebrates the beauty of neurodivergence and all the possibility it brings to the world. This post is intended to help us all be better allies to the neurodivergent community, today and every day.

Here are 23 things I wished I had known five years ago in order to be a better ally to my child and autistic community members.

The intent of this post is for everyone, especially neurotypical (NT) parents, siblings, educators, peers, co-workers, policy makers, bosses, and caregivers who want to support autistic people.

Also to the neurodiverse (ND)/ #actuallyautistic people, I hope I got this right. If I didn’t or missed something important, please tell me!

1. Can you define autism, right now? If you can’t, then you probably don’t know much. Keep reading and learning!

When it was suggested that my one and a half year old might be autistic, I was paralyzed with fear. How in the world would I help my child? Where do I start? I cannot remember the exact moment when it happened, but at one point the epiphany came: I knew NOTHING about autism and this ignorance filled me with dread and fear.

Once I was able to define autism without googling it, the anxiety began to subside. I became receptive to learning more and better equipped to help my child after his official diagnosis.

Start with learning the definition and do not attach judgement to it. Observie and learn, rather than rely on presumptions. When I did that, I ceased to worry about all I didn’t know.

Even if you know nothing right now, just learn one thing today. Then grow from there.

Knowledge is power.

2. Autistic is not a bad word, so don’t act like it. You’re allowed to say autistic. In fact, most people on the spectrum prefer this phrasing because their neurology impacts their entire life experience. However, not all autistic people prefer this. Confusing, I know.

Want to know what to do? Just ask the person what they prefer!

Does it feel weird to ask them? That might be because you think of it as an insult. Autistic is a type of brilliant neurodivergence. It’s not an insult. If you still feel weird about it may mean…

3. One’s level of (dis)comfort when discussing autism indicates how much learning needs to happen. So learn! I’ve written about it here on the blog, but also follow the hashtag #actuallyautistic to learn about autism from autistic adults. I share many of my faithful resources on my Instagram @sensationalstims.

4. Tell your child ASAP. Do not hesitate to tell your child. Why?

A. Hiding an autism diagnosis implies there is something to be ashamed of. I assure you there is not.

B. If you feel ashamed, you need to seek help. I say that with the utmost love and kindness. Lots of folks who have a neurodivergent child learn about their own neurodivergence and/or suppressed traumatic past. Seek help. You’re not too busy for this.

There is no shame in taking care of yourself. A healthy ally is an effective ally!

C. Your child is amazing. Learning from your them is a wonderful way to learn about what autism means for your child.

D. Most autistic people who were diagnosed as adults will tell you they’ve always known they were different than neurotypical peers. Your child likely already knows there’s something different- use the right words to explain it!

E. Understanding everyone’s unique needs significantly reduces stress on the neurodivergent person (and neurotypical people, too).

F. Tell siblings and people living in the house, too. Why? Because you live together! It’s helpful to know about family members’ different needs.

G. Don’t advertise a diagnosis without consent. But if the autistic person is a child and lives with or frequently visits another person/family, it should be shared.

5. Stimming is important! Autistic people have a different sensory processing system. Stimming is a way to deal and cope with different sensory needs. Check out my book about stimming. It’s an enlightening, sweet book about allyship and authentically represents what stimming is.

6. Some people will absolutely break your heart in their unwillingness to make the world more inclusive. As you become more aware about autism needs, some responses from family, friends, even medical practitioners may surprise you. Trusted people might be ignorant which translates to mean, ugly messaging.

It hurts. It’s confusing.

Sometimes you will need to let those people go and sometimes you can educate them. I’ve been on the giving and receiving end of this experience and it’s rough. But I also have learned so much from my mistakes and from transgressions committed against me and my child.

7. Some people will restore your faith in humanity. Cherish those kind, loving people. Remember them instead of the heartbreakers. Become this person. I’ve also been on the giving and receiving end of this experience, too. It’s all I’ll ever need in the world.

8. “Curing” autism is wrong. Autism is the way a person is. Acceptance is the only cure needed. If you want to “fight” the way a person is, it’s a traumatizing, abusive approach. There are MANY outlets that want to “cure” autism. This is highly offensive. I was looking through all the notes I have taken over the past 5 years and early on in my journey I went to a training called “Fighting Autism with [insert the name of quack doctor here].”

I shudder at some of the “professional” advice I paid for, believed, and followed.

However, there are things you can do to support an autistic person to help them experience the world in a healthier way. For example, food tremendously impacts a person’s overall health. A common experience for NDs with sensory sensitivities is that they struggle to physically tolerate certain foods. Uniform tastes/textures tend to be preferred and this uniformity is a guarantee in highly processed foods. But highly processed foods have unquestionably adverse health effects.

There are therapies and support for this that I’ll share about later. Learn from professionals about ways to work with sensitive palates so your loved one can be healthy, and also have their legitimate needs met!

9. How to discover if a training/therapy is appropriate or not: replace “autism” with another group’s name and see how it sounds. By using a different noun instead of “autistic” in the description of the proposed training/therapy if it is problematic or not. I share this because it is often overwhelming to learn, implement, and adapt to a person’s special needs. It’s also expensive and very time consuming; most parents don’t know where to start or what to do.

For example, instead of the aforementioned “Fighting Autism with Dr. Quackenstein” training I attended (see tip #8), I replaced the word “autism” with the word “Latinos”, and said it aloud. Let’s see how it sounds: “Fighting Latinos with Dr. Quackenstein”. Wow!

It immediately sounds wrong. You can do it with any noun you prefer and prepare to be amazed and how awful and trauamatizing really intelligent people can be.

10. You may have feelings of guilt the more you learn about autistic people and their needs. Some may feel guilty with regards to their previous attitudes. Others might realize therapies/trainings attended in the name of helping were actually traumatizing the one you intended to support.

I know I have struggled with this immensely. All I can say is that when you know better, you do better. Guilt and shame help no one. Move forward by acknowledging your mistake and vow to do better by first listening to autistic voices.

11. Don’t use the terms “high functioning” or Asperger’s. The implications of these terms are laden with ableism. Autistic people have varying support needs that fluctuate over time, so instead of “high functioning” (because we have no clue how much effort/work it takes for an autistic person to be perceived as ‘high functioning’ aka neurotypical), it’s much better to say describe a person’s support needs. For example, “Sally has low support needs in the area of math, but high support needs in executive functioning skills.”

Asperger’s is often used as a synonym for high functioning and implies that a person is only a smidge autistic. Actually, Asperger is the last name of a Nazi doctor who did terrible things during WWII, including murder children. Also, Asperger’s (since 2013) is no longer a recognized label on the DSM-5. That’s because…

12. A person is either autistic or not autistic. Similar to being pregnant, you can’t be it a little or a lot. People are autistic or not. While neurotypical people may have some autistic traits because autistic traits are human traits, we are not all a “little bit autistic.”

Just like you would never say to a that because you and and a pregnant lady both have lower back pain that “we’re all a little bit pregnant”, don’t say “oh we’re all a little autistic” to an autistic person. It’s rude, untrue and not perceived as the sweet bond you think it might be. Also unlike pregnancy, autism is lifelong. A person cannot outgrow autism. Which leads me to my next point…

13. Autistic children become autistic adults. The autism spectrum is wide and depending on a person’s access to healthcare, support systems, intellectual capabilities, unique life experience, geographic location, gender, culture, socio-economic status, etc., the presentation of Autism and support needs will vary. But autism doesn’t go away with age. And since autism cannot be detected purely by visual cues, it’s always best to just recognize that sometimes people need help whether they have a diagnosis or not.

Getting an official diagnosis is a privilege. It takes a lot of clinical experts to get a diagnosis and it takes a long time to do. Usually people who can afford health care get this, while many others don’t. Respect those who have had obtained an official diagnosis and those who haven’t but have self-identified. Sometimes that’s all a person can do.

14. There will be awkward moments. Communication differences often cause social distress for both neurodivergent and neurotypical folks. Always presume competence and recognize that everyone is doing the best they can.

Most often, because communication styles differ, neurotypical people often feel offended by an autistic person’s linguistic faux pas. Because a NT usually has the social power, they are the ones typically considered “right”.

Neurotypicals, remember the inherited the privilege of being born neurotypical. It’s significantly easier for you to understand the social nuances of the NT world that impact every element of life.

As a parent who routinely finds myself in extremely awkward situations with my child and another person, I can assure you we’ve never died from it. Lean into the awkward.

15. If you’re not sure why an autistic person says/does/thinks a certain way?: ASK! My entire world shifted when I realized there are autistic people who are more than happy to share their insights and experiences and often do so for FREE!

There is no better expert on what autism is than asking an actually autistic person. Better than even asking, simply listen and learn! I follow the hashtag #actuallyautistic as well as a variety of specific accounts. This was especially helpful when my son was preverbal. These adults’ stories, wisdom, and knowledge stunned me. If you follow @sensationalstims, I share many helpful tips from a variety of accounts.

Bonus: I now get to ask my own child about his needs, preferences, and experiences.

16. There are lots of ways to communicate. Many autistic people struggle to converse verbally, but AAC (Augmentative and Alternative Communication) devices, sign language, writing, and behaviors are all legitimate, helpful ways to communicate. If you know of an autistic person who struggles with speech, find other avenues to connect and resist the urge to only value spoken language.

Also, depending on the stress load a neurodivergent person is under, sometimes the capacity to communicate verbally significantly declines. So if a neurodivergent person doesn’t answer right away, even if they usually speak, this may be due to other mitigating factors.

Neurodivergent folks often shed a light on problematic social practices and confusing figures of speech by acknowledging (or not acknowledging) certain social things. Instead of writing off these unique observations/behaviors as idiocy, the kind thing to do is either to explain why something is a certain way or acknowledge that while something might not be entirely practical, discuss how to handle the situation in a socially acceptable way, but that still keeps the dignity of the neurodiverse person in tact.

Additionally, what neurotypicals may label as rude might feel direct to a person on the spectrum.

17. Neurodivergent Love Languages. I saw this tweet from Amythest (@neurowonderful) and need to directly quote it: “The five neurodivergent love languages: infodumping, parallel play, support swapping, Please-Crush-My-Soul-Back-Into-My-Body, and ‘I found this cool rock/button/leaf/etc. and I thought you would like it”.

These terms all relate to different, sacred ways a neurodivergent person might share their platonic or romantic affections. If an ND shares love with you in a unique way, feel honored because many autistic people have learned to mask their true self due to negative social consequences. Also, these ways to share love are not ONLY for NDs, but they tend to be more common for NDs than NTs.

18. Be EXTREMELY careful when financially supporting autism foundations. When it comes to autism research, not all foundations are created equal. Many of these places have worked to eradicate autism (read: practice eugenics). Here are some good ways to tell if a foundation is worthy of your money:

A. They hire autistic people to learn about autism and the autistic experience.

B. They find ways to support autistic peoples’ needs, not suppress or force compliance, and proudly share it with their supporters.

C. They do not infantilize autistics or view autism as a tragedy or disease to overcome, but celebrate the beauty of the neurodivergent mind and all the possibility it brings to the world.

D. Though autism rates are on the rise, it remains one of the lowest funded areas of study in the United States. It’s important to think about who we fund and who we don’t in the process of rectifying this sad fact.

19. Your attitude and language matters: be mindful of the words you use. How you act and talk about a person’s neurology will significantly impact their life experience. Much of the anxiety and depression autistic people experience are due to trauma, not autism.

20. Autistic/ Neurodivergent people live in a neurotypical world; they are usually not in positions of power. It can be very challenging, complicated, confusing and exhausting. Just because some things might be obvious/simple/easy for an NT does not make it so for ND people, who are almost ALWAYS required to make an adjustment, not the neurotypical person in a position of power. If you want to be an ally, explain things simply and give people time to adjust.

Pro tip: these approaches are helpful for nearly all humans!

21. Pathologizing differences is wrong. A common reason family’s fear an autism diagnosis is because it is often pathologized or phrased in ways that are similar to life-threatening illness. Here’s a common one: “Know the signs of autism and get treatment right away!”

I’m sorry, am I looking for a neurological difference or stroke signals?

Often, typical autistic traits are listed like symptoms which freak out inexperienced parents! For example, lining up toys is a common identifier when starting the path to diagnosis. Is this type of play inherently bad? Of course not! However, recognizing and diagnosing autistic traits helps people get appropriate services and assistance.

22. Address needs without attaching judgement. An ally does not judge another’s need, but accepts what it is and helps meet the need.

Sometimes autistic people are gifted at things that you might not value, and not very good at things you have determined are necessary. Please resist the urge to shame a person for engaging in “immature” play, or “hyper-fixating” on something you don’t care about.

There are things that autistic people will need to learn that might have been simple/easy for you or other neurotypical children. So what?

If you find yourself saying things like, “she should know how to do this by now!” or “this is so easy why can’t you just do it this??” Or “be more flexible- why do you care so much?!” These shaming statements do not support or affirm an autistic person, but encourage masking and burnout.

Remember that milestones can come at varying ages and give people time to develop skills and have a healthy life experience.

23. Celebrate neurodiversity today and every day! I am so thankful to live in a world that is beginning to tap into the power of neurodivergence. The more we learn about different manners to solving problems, viewing the world, and our own unique needs, the better of we will be.

Thank you for reading. I hope this all helps us be better allies to the growing neurodivergent community. Please share and don’t forget to follow @sensationalstims on Instagram and Facebook!

I honestly could add more, but I tried to write the most important aspects that helped my family.

Is there anything I missed or something you found interesting? Tell me!

Autism Acceptance Begins with Autism Awareness: Stimming

Featured by eringarciabooks, posted in special needs

John Steinbeck once said, “I wonder how many people I’ve looked at all my life and never seen.” How true that statement still is.

Today we discuss autism acceptance. Society often looks at but doesn’t actually understand what autism actually is. I suspect this is because everyone has heard of autism but few can actually explain what it means. This is a problem that this post is designed to ameliorate.

Today I share with you how I came to authentically understand the beauty of neurodiversity.

I hope this piece helps you be an effective ally for any neurodiverse person.

Right now in America, 1 in 5 autistic teens will be stopped and questioned by police before age 21 for suspicious activity. People with disabilities, including autism, are five times more likely to be jailed than those without disabilities. This is a problem that you should care about.

“But what if I don’t know anyone who is autistic?”, you may ask.

I understand that stance because I once had a similar view. Today, I have a big favor to ask: read this like the person you love most in the world was recently diagnosed as autistic.

Today, 1 in 54 people are autistic. Statistically, you’ll know someone who is autistic and it might not look like what you think it should. Because as I noted earlier, most people are familiar with the word, many could not explain what it means, what it looks like, why it happens, or what supports are needed to help people on the spectrum thrive.

The truth is I would not have made this effort if it were not for the sake of my own child who was diagnosed about 6 years ago. I also know I am typical in this way; I don’t generally care until I see how it affects me.

Accepting and harnessing the power of neurodiversity will help solve a lot of society’s problems.  I’ll tell you more about that in another post, but today I need to talk about something more pressing: the safety of autistic people. 

Before I begin, I must note that I struggle to critique people in positions of power because I know at the end of the day, we are all doing the best we can. I am not anti-police, anti-medicine, anti-teachers, anti-psychologists- I am not anti-anyone. But I am unapologetically pro-safety, especially when it comes to my own child. Lots of people are aware of autism but it’s very obvious many do not accept autism. We need acceptance so parents can help their children thrive, so doctors can authentically support their patients, teachers help empower their students, and law enforcement do a more effective job when working with autistic people.

We need not just autism awareness, but autism acceptance. You cannot accept what you don’t understand, so the point of this post is to help us understand autism a bit better, nothing more, and nothing less.

Autism accetpance would have helped the Utah officers who shot 13-year-old Linden Cameron eleven times. Eleven. Times. I wasn’t there when Linden was shot eleven times, but I bet this 13-year old was stimming in public.

Why was this 13-year-old was shot eleven times? More likely than not, officers didn’t know what they were looking at and felt threatened because of their ignorance. Stimming can seem scary. Especially if you hear lots of sounds and noises and don’t know these are simply a very important way some people need to regulate their senses. I hope you can understand why parents like me, who are also parents of Linden, would want people in positions of power to genuinely understand the autism spectrum.

It’s the same reason Elijah McClain, a young black man who “looked sketchy” (that is an actual quote from an officer involved), was ultimately was killed through events orchestrated by law enforcement. It happened because of Elijah’s unusual appearance.

If we just accept that getting riddled with bullets is simply a part of life, we are doomed. It’s not normal, so don’t act like it. You can be outraged that this happened and still want to work with police so that this never happens again. And by the way, this doesn’t just happen with police. Abuse by parents, caretakers, educators, random people also happen daily.

But of the most pressing importance is that people in positions of power are stressed out when they see neurodiverse people regulate their senses in public (aka stim). A major reason for the stress – which manifests in fear- is because these powerful people are uninformed/miseducated. So let’s inform people properly so that everyone can interpret what they see correctly and help everyone thrive. But you can’t be informed if you judge stimming to be something to be “cured” or deem it rude and something to suppress.

Stimming can look like rocking back and forth, flapping hands, making noises. My son often stims by galloping back and forth and making grunting or squealing noises. The purpose of stimming is to work through a sensory or stimulating experience. That’s what my book The Case of Sensational Stims is about. It is now available on Amazon.

Stimming is a common behavior of many people, especially autistic people. It is often confused for “antisocial” or “suspicious” behavior that needs to be stopped. When adult autistic people stim, it is often interpreted as a person on drugs, which might be one reason why they are more likely to be apprehended by law enforcement.

My own child tends to stim more when he is anxious or excited. He often takes a second to stop or respond if he needs to answer a question, and I can clearly see how someone like him could get in trouble by the police. Depending on the intensity and nature of the stim, it is difficult for him to immediately stop or listen to a verbal command. I wrote The Case of Sensational Stims to address stimming. I did not want my son to have the same fate as Linden or Elijah. That’s the real, selfish reason I wrote this book.

But on a more positive note, it’s a happy book that celebrates stimming for what it is: a way to regulate one’s sensory experience and needs. Special sensory needs are nothing to be ashamed of. They simply need to be understood.

I also don’t believe in the concept that there are “other people’s children”. Linden and Elijah deserved safety. My son will be one of the most vulnerable in society because he is not in the majority class of neurotypical. People in incredible positions of power like the officers who shot Linden did the opposite of creating a safe environment. I don’t think they intentionally set out to harm an autistic child. They didn’t know what they were looking at. We have an education problem that can be fixed. But please, do not waste your time defending these officers. To do so would be to normalize shooting children. That’s lunacy. If you feel the strong urge to do that, this is not the place for you.

I wrote this post and my children’s book to fill the gaping, dangerous abyss that exists because people in positions of power do not understand some basic things that are critically important for the safety of neurodiverse people.

To be an effective advocate I needed to do the painful unlearning of some serious misperceptions, just as I am asking others to do. The Case of Sensational Stims, a children’s book I wrote to educate all of society about the importance of stimming is the result of my unlearning. It’s founded in my new education from resources written by autistic people as well as from my time spent in a classroom and learning about my child’s and my own neurodiversity.

My son’s “mysterious” needs are actually very relatable when I took the time to just listen to those who had similar needs. Typical behaviors of autistic children often begin with a question rooted in dismay (e.g. “why is he lining up his trucks!?”, or “why does she cry when I give her a bath!?”, “why does he keep saying the same words over and over!?”) and these same observations are often problematized by clinicians. Most of this unusual behavior is not harmful, but it certainly is different. And obviously, some stimming can be harmful if a person is banging their head against a wall or picking themselves until they bleed. My son often would bite hard things like bed posts and banisters. Something about the pressure on his teeth felt really good, but I feared he would only have nubs for teeth and all of my wood surfaces would have bite marks. We eventually learned about chewlery, got him a few options, and behold! His teeth are safe and so is my furniture! It was also very encouraging to know that this was a common need and that there were stimming tools to help my child with his unique sensory needs.

This realization took many months of agonizing over what I was doing wrong to make him want to bite hard surfaces. The answer was nothing! His sensory needs had nothing to do with our parenting. Relief!

But many well-meaning people try to “teach” their child how to stop regulating themselves if it is not socially acceptable. Instead of encouraging others to repress their stims, we need to discover what the root of the stim is and if necessary, help replace with healthy, safe behaviors. Stimming is an important means of regulation and supressing it causes burnout and meltdowns.

Before I knew better, I pathologized stimming. “He can’t keep moving around while we are at a restaurant!”, I would proclaim. I viewed my son’s behaviors like a tumor growing on his body, but if I am really honest, this was mainly because I knew others were judging his behavior and I felt ashamed and embarrassed. When I changed where I obtained my information, I gained a newfound perspective that empowered me to become a better parent to my child and teacher of neurodiverse students. I quit caring about judgement because I had clues about why he was behaving certain ways.

I realize now that all forms of behavior from all people, both neurodiverse and neurotypical, are important forms of communication. My son’s “unusual” behaviors serve a very meaningful purpose. For the first time, I saw beauty and wonder at his behavior like most parents of young neurotypical children do (instead of the chronic anxiety and dread I previously experienced when I saw him stim). And certain behaviors like running back and forth incessantly- one of his stims that led me to the path of diagnosis- was an indicator that he was regulating himself due to environmental stress. I was finally able to see it for what it was (for him, this was due to loud noise that hurt his ears). I now could support him appropriately (we use ear plugs/ defenders, or sometimes we just leave if it’s too loud). It was a miraculous yet simple discovery. I didn’t have to judge his behavior nor worry how others would feel about my child “running amuck” in a restaurant when he was really just soothing himself.

Getting information from the right sources is critical. Everything seemed to “fit together” when autism was explained to me by autistic adults (but no, for the record I don’t use the puzzle piece to symbolize autism and here’s why). I no longer hoped my son would “learn better” or “be different”. There was nothing to mourn; he just needed a specific kind of support that I knew nothing about. Everything came into focus, but I wasted critical formative years on a clinical approach to autism. If this post can prevent one parent from the agony or one child from the misery, my effort here will not have been wasted.

My transformational understanding is not overly optimistic nor does it discredit the real challenges and concerns that accompany those with special needs. But caregivers, whenever an “expert” pathologizes an unusual or undesired behavior or says it’s a manipulative, conscious decision made by your neurodiverse child, I tell you without hesitation seek a different advisor: your “expert” is a hack.

Advocating effectively is difficult. I’m not sure I’ll ever get to the final destination of total inclusion and societal harmony. I also know I make mistakes even though I’m trying my best. I’m sure some reader will be offended by something I’ve written here and inform me what a piece of trash I am because of the way I worded something. I’m fully anticipating it and ready to do better once I know better (also I will leave room for the possibility that sometimes keyboard crusaders can be wrong).

If we want a healthy, thriving, conscious society, we need to call things by their proper names and take time to genuinely learn about what we don’t understand. Just because you can “see” something, as Steinbeck noted, does not mean you actually understand what you are looking at.

At the very least, we need to believe people -all people- when they share their experiences. And if you haven’t made yourself uncomfortable by getting to know the person –not the topic– maybe that’s where you should first begin. It’s important to support where we can, and genuinely ask questions with the intent to understand. It takes time to look, see, and interpret. You might have to unlearn some things. That’s ok. This courageous decision is an investment of your precious energy. I can promise you though, the reward is worth it. 

If you would like to pre-order a copy of The Case of Sensational Stims you can do so here until May 1, 2021. After that it will be available on Amazon in May. 

Special Handshake

Featured by eringarciabooks, posted in special needs
Processed by Collageable

*Disclaimer- I wrote this in 2019 but got the courage to make it public in 2021. Progress!*

I wish there was a special handshake for parents and allies of special needs kids. Something subtle, but noticeable that shows, “I understand what I am witnessing and I am cool with it, and you. I come as a friend.” It would need to be something that is appropriate in all cultures, so it could work on an international scale. Something inviting, like the Star Trek Vulcan salute, or a wink or something. It would really make our lives a lot easier.

This post is a chronicle of a social excursion for me, a parent of an autistic child. I write it to commiserate with other special needs parents, and perhaps help others understand (especially teachers and voters) why articles like an entire graduating class giving a silent ovation for a man with autism, matter. If you find yourself rolling your eyes at headlines like that, I definitely get it. I used to be of a similar mindset. I mean, inclusion is cool, but that isn’t how the world works, right? How in the world is not clapping for one kid a big deal? And why should we not clap? Everything is much better than it used to be. This kind of stuff is going too far. What’s next? Who cares?

Also, this is not written because I feel bad for my son or need to identify with being a “special needs parent” to feel special myself. I don’t. He’s perfect just as he is. I simply and firmly believe that there is no such thing as “other people’s kids”. We belong to each other.

I want to try to explain why you should care, but it’s a nuanced answer that is best explained with a recent, actual outing. Though we’ve come extraordinarily far, the bar set before things like the Americans with Disabilities Act was set extremely low. If you want to learn more about our country and the world’s relationship with special needs people, please read this incredible book. But today is just a brief insight into one family’s daily life, continue on.

Yesterday we went to the library to return some books when we unexpectedly arrived at the exact same start time of the reptile show. Reptiles are a favorite of my kids, but especially for my son who is on the autism spectrum. It’s been my experience that autism is generally misunderstood for a variety of reasons, but one main reason is that it presents so differently in each autistic person. For my kid, one volume and types of noises, textures, and lights often cause sensory overload for him. This is so not just for autistic people but for many others who have any kind of sensory sensitivity or processing disorder.

Since it was a Thursday afternoon, I felt like it was even better because the place surely wouldn’t be that crowded, making it simpler for my child to succeed in this setting with fewer sensory stimuli.

Except for today, the room was packed.

I took a deep breath. While I am thrilled that a public library was bursting at the seams midweek, I am still very weary of how my son will respond in crowded settings. I am not quite as on edge as last year, when he entered a general education kindergarten class. I worried extensively about elopement and social trauma, but it went about as well as it could. Life is starting to get a little easier.

It’s a tricky thing to be a parent of an autistic child. There’s a unique paradox that only the parents seem to know: on one hand we are so proud of our brave, resilient child, but also so fearful of the inevitable cruelty that will cross our child’s path. We all cope with this differently, but I find myself on daily alert for brutality towards my child. I also remind myself that everything, even cruelty, is a learning experience. I still get nervous when we attend social events, but am not deeply anxious anymore. This is not just because I understand that if I only look for cruelty, that is what I will find, but also because he practices a lot with trained professionals like speech therapists and occupational therapists outside of the normal school day.

Most kids sat on the floor of the retile show and parents sat in the back. The presenter was pretty funny, and made jokes throughout as he educated kids and parents.

Though nervous to let him be on the floor with his neurotypical sister but I decided, “I’ve got to learn to let him do this stuff, it’s the only way he will learn.”

The first half of the show he figuratively hit it out of the park- I couldn’t believe how well he did sitting on his bottom, listening and raising his hand. “Just like a regular kid”, I thought proudly.

Someone else arrived partway through the show. A beautiful little girl, maybe about 5 or 6, who walked right through the crowd and up front to the reptile presenter. She showed no concern for the others around her. The presenter frequently had to ask her, in front of everyone, to sit down, to stop touching his reptile containers or the reptiles themselves. She walked around touching other kids’ heads near the end of the show.

I don’t know this child, but I’ve seen this kind of behavior before. My son is built with a motor that prevents him from being able to stay seated very long. He has never finished a meal without getting up multiple times. Sometimes he gets lost in his thoughts and forgets what he is supposed to be doing. His compulsive need to touch interesting things make for some very awkward apologies when I explain to the middle-aged woman standing in line why my kid put his hand up her shirt. Because of my experience, I realized the way this little girl was behaving was not that of a naughty child, it was of a person who has special needs. Without raising a child like mine, I know I would have judged this mother to be negligent and this child to be willfully disobedient. In fact, even with my personal experience, I began to wonder why the mom didn’t just grab her kid and hold on to her after the fourth or fifth warning by the presenter. This was social suicide for her kid, and frankly, a bit disruptive.

The mom stayed in the back and watched this happen. I must give kudos to the presenter, because he had every right to ask the mother take her “disobedient” kid out. He didn’t do that, but I could understand how he probably wanted to. I wonder how many times this mother and child got dirty looks and judgmental statements hurled at them.

I couldn’t help but wonder if she knew she could get help to allow her daughter a better life experience. Maybe she did know and this is just what it looks like right now. Maybe she is in total denial? No, I saw how this little girl was dressed and groomed; this is a devoted, engaged mother who does understand society. But when I looked at the mom, she didn’t look disappointed in her daughter. She saw everything her child was doing, and didn’t spend her energy attempting to look disappointed to please the people she knew were looking at her, like I usually do. I was equally impressed by her, and ashamed of myself for moments earlier mentally congratulating my child for appearing “regular”.

I was also reminded of another thought I had only moments earlier about my child and wondered if she had the same thought about hers: “I’ve got to learn to let him do this stuff, it’s the only way he will learn.” Maybe that’s where this mother was, too. If so, she had way more grit than I have. I would have pulled the plug on the social outing way sooner.

We have come a long way from the old days of locking up children with special needs, or attempting to beat their “bad” behavior out of them. It was not that long ago where society as a whole believed children could be born defective, and though we usually didn’t murder them, we found it socially acceptable to lock them up in facilities that would halt anyone else’s “progress” by being slowed down by another. If you do not believe me about our history with people with special needs, please read In a Different Key. We still have a long ways to go before we can say we are a totally inclusive society, and even though it doesn’t always feel like it, our culture has made tremendous strides in a positive direction.

This child’s behavior was really hard to watch; it’s tempting to remove her from the situation. But each time we remove someone with special needs from the group, we prevent social progress because we prevent inclusion. At the reptile show, her awkward interjections made us go a bit more slowly, but there was a lot of learning happening. No, not just for this one child, but for the entire group, though I am not sure if the entire group knew. We were learning not just about reptiles, but also about patience, compassion, and empathy. As a teacher, I now think about how often we stop learn “in the moment” learning because it’s awkward and feels super slow and off-task. But I realize now how important slowing down is. It is no waste- it’s a valuable investment.

Deep down, and I am ashamed to admit this, I was a little relieved that it wasn’t my kid this time. This behavior is what my six year old’s social outings used to frequently look like, though he still does socially unacceptable things. However, for the first time in a long time, I got to be the objective onlooker and I noticed this child didn’t hurt anyone. She responded to the presenter each time. It was awkward and slowed us down, but we all still enjoyed the show, and she got to be a part of the group. There were lots of awkward, cringe-worthy moments, but it all worked out.

One interesting fact: to date, nobody has died of an awkward situation.

Sometimes I wish I could just go places with a big, light up billboard right over my head that said, “My son is autistic, that’s why”. I would turn it on whenever that cringe-worthy thing happened. Like when he raised his hand to go up and hold the python with a group of kids. I noticed he put his hands in his pockets, which was probably because he really wanted to hold up his shirt and bite it (but I told him earlier during the show he cannot do that and have told him this what feels like millions of times). I was proud of him for finding something else to do with his hands, but then the presenter told him to get his hands out to hold the snake, he wouldn’t do it. We made eye contact, and I gestured for him to put out his hands. Reluctantly, he took out his hands. He held up the end of the snake with glee, but I know he was mitigating the desire to squeal, flap his hands, and probably bite something because he was so elated. Though it took him a bit longer, he responded to the request. His progress makes me proud and breaks my heart. He has to do this every single day. And also, why can’t he just flap his hands? Who cares?!

My little boy loves to make jokes and he knew that this presenter was very funny. When his time was over, the presenter told the kids to sit down. He wanted to be silly with the reptile expert, but struggles to know when and where this is appropriate. After a few failed attempts to make the presenter giggle, he finally took his seat. At least he wasn’t doing what the little girl was doing, which was getting up again and attempting to touch his basket containing a lizard. I believe the distraction helped people not judge my kid so harshly for doing “weird” things.

After the show, we went to the children’s reading area where I ran into a respected administrator in my school district. He was there with his four perfectly behaved children. I introduced him to my kids, my neurotypical daughter said “hello”. My neurodiverse kid reached out to shake his hand, then told him he doesn’t shake hands, then offered “knuckles”, then shook his hand anyway, then told him to do knuckles, then he closed his hand over the administrator’s hand, then wandered to the back of the reading room.

*cringe*

I wish I had that light up billboard right then. But awhile ago I decided to no longer explain to people that my child was on the autism spectrum whenever something like this happened because: 1. I don’t think many people actually know what that explanation means and 2. I know that he notices EVERYTHING, even things cannot be seen. When I act disappointed in the way he is, I am sending him a powerful message that who he is isn’t right or good. I know I get a lot wrong, but I’ll be damned if my kid gets this message from his mother. That’s what advertisements and social media are for. Also, my kid loves to make jokes. This greeting, in hindsight, was actually pretty funny. Why can’t I just celebrate that in the moment?

We finally went to the back of the children room where the mother with her little girl were reading. The mom was struggling to get her to hold onto a book and look at it, something my son still struggles with, too. I noticed the mom spoke to her in Spanish, and the little girl answered in English. I was impressed by their bilingual exchange. I wanted to go say hello to the mother, but I didn’t know how to do it and wondered if she was fluent in English. I knew some Spanish, but if I was going to connect, I feared my Spanish skills wouldn’t get the job done (this is why we need a special handshake!!!).

I wanted her to know I understood the behaviors I was witnessing and that I thought her little girl was great. I tried to make eye contact to at least offer a smile, but it seemed the mother either didn’t notice me, or didn’t want to even go there, which I totally understand. This mom would have no way of knowing if I was friend or foe. I’ve been chastised by a perfect stranger for “neglecting” my child who was behaving in a socially inappropriate way. I’ll never forget it and would never want someone to experience that either. I suspect this mother has had this happen to her more than a few times.

Social outings are extremely exhausting for me even now with how much progress we have made. I know they are exhausting for my son too, and usually he goes to his room and lays down with his animals when he is done.

Children with special needs like my kid try so hard every single day, and succeed often. And they fail sometimes, too. Because they are children and learning. Because they have special needs. Because they are human beings. We push children with disabilities way harder than typical children. If I were my son I would hate to always have to make behavioral adjustments and mask who I am because society as a whole will fundamentally misunderstand me.

But how do I change this reality? This is the paradox of raising a neurodiverse child: you know they are brilliant and awesome exactly as they are, but they do need to respond in a socially appropriate way to the world around them if they ever want to thrive and have a chance at independence. There needs to be a way to explain briefly to people things like sensory overloads so people quit judging the wrong darn thing. Behaviors that are demonstrating a sensory overload need support not moral judgement. The worst part is that the ignorant onlooker seems to be the ultimate factor in determining if a child like mine is worthy of inclusion. This judgement is why autistic people are more likely to be apprehended by law enforcement, even when not breaking the law. People often do not know what autism actually looks like in regular life and the amount of trauma it inflicts on innocent people is one of the most despicable things I can think of. This fact is why you see autism awareness stuff EVERYWHERE; parents like me are scared. And we’re tired. And we are dependent on you to help our kids (and our autistic kids who become autistic adults, too!). And often, we parents aren’t even the autistic people! Can you imagine how they must feel?

I wish people could also consider what happens before the odd behavior, or at the very least what the function of the behavior is before they determine a person to be “bad”, or “weird”, or “naughty”. Right now, this is not considered to be relevant in the general population. Until that kind of thoughtfulness is pervasive in our society, kids like mine will live on the fringes. Until that day of sincere daily inclusion comes, I will keep writing to try to make the world a better place through education.

On a more basic level, I wish we had a special handshake or signal for the day to day activities to help families move through the world of parenting a child with special needs. Something that says, “I get it!”. It would help so much.

Any ideas?