hen your child is identified as autistic, most parents believe they need to learn a monumental amount of information in order to support their child. I definitely took that approach when my kid was first diagnosed.
But in hindsight, if you really want to help your child, an unlearning must occur.
Most parents begin to observe that autism might be present in a child when developmental milestones are not met at the typical times. This often creates fear and anxiety within the parent.
This looks like: “She should be talking by now” or “Why isn’t he playing with kids at the playground?”
This is what happened with my child. It appeared everything was “normal” and then, around 17 months, we saw a regression in speech, as well as sensory processing differences that were no longer quirky; they were intruding on his quality of life and ability to access a typical education.
There was no doubt my son was growing and learning, but he was doing so in a way that caused alarm because it was not typical.
The alarm was that he appeared autistic, when previously he didn’t seem to be.
I was always taught that early intervention was the key to a child’s success. I was counseled about the “warning signs” of autism and how it needed to be “treated” right away, or else….
This right there is what people need to unlearn.
The way autism is described to parents makes it seems like a disease that can grow and take over an entire person, somehow locking them away from meaningful relationships and joy.
Unlearning that approach and asking better questions will yield far greater results.
Better questions are: is your child developing? What external factors could be preventing development? Are you aware of your child’s sensory needs? What do you know about the autistic mind and how it differs from a neurotypical mind?
If you can answer these questions first, the fear will begin to dissipate. Autism is a disability because of the world we live in. The timetable pushed from the medical and educational community might leave your child out.
Do not get me wrong, milestones are important markers, but if your child is autistic and not meeting milestones at the prescribed timetable please do not fear.
This requires a great deal of courage because many parents are shocked by an autism diagnosis in the first place. Additionally, asking questions to people in positions of authority like school officials and medical providers is often perceived like challenging authority.
Some questions I had to ask: How does one “treat autism”, exactly? If we don’t approach it like a disease, what else will happen? How do I intervene in autism, exactly? What am I intervening in, exactly?
Years later, here’s what I wished I was told when my kid was first diagnosed:
Developmental milestones are approximations of appropriate progress.
Milestones are based on the neurotypical standard that dominates parenting books, and they shape our perception of acceptable development.
Our whole educational system is based on a neurotypical timetable that leaves very little space for neurodivergent thinkers who develop outside the typical.
It’s for this reason my spouse and I feared for our son’s future. We were very explicitly told that autism was serious. We were coached that his natural way of processing information was something to extinguish as best we could with “early intervention” that could reduce “symptoms” of autism.
The autistic way of processing the world is not a disease. Approaching your child as though this is the case is precisely how you damage and traumatize them. Autism is not the problem; our way of thinking about it is.
Our entire system is based on an expectation of socially accepted time and space for our children. If your child has been diagnosed as autistic, I understand the fear and concern you might be having, especially if you have not paid close attention to autism before. But very likely your child will not develop typically because your child isn’t typical. That isn’t a problem unless you judge it to be one.
If your child doesn’t develop at the same rates as others, doesn’t mean development isn’t occurring.
And maybe they speak later, or achieve gross motor skills later. So what?
Maybe they’ll need additional support like speech or occupational therapy that helps with the acquisition of those skills. So what?
Your child isn’t broken. I bet your child has other gifts that are never asked about or measured on a pediatric chart. But you could chart them if that’s what’s needed to celebrate. And you need to celebrate them just as all children need to be celebrated for exactly who they are.
Parents must get used to the idea that the way their child grows could look different than others, and that’s perfectly fine.
I remember very vividly a time when I was taking my then three year old to daycare. I was constantly worrying about his lack of speech and what I would do. I worried about his intelligence multiple times per hour. “What is happening inside his mind? Why can’t he repeat after me? What is happening? He used to make sounds, right?”
I buckled him in and got in the car, and he began making all kinds of sounds as I began to reverse the car. I said, “what’s wrong?!”, surprised by the sounds he made.
My first inclination was that we were in a rush, and stopping for what seemed like “nothing”. We were always running late, and I was stressed. And yet, I could not help but be shocked by this unusual interaction.
He kept making the sounds, never ceasing until I put the car in park. At the time, he struggled to point, which is a common issue for autistic children. It seemed he was alerting me to the front of the car, so I opened the door and saw my coffee mug resting on the hood of my car. I could not believe he noticed that and that he felt compelled to alert me.
In that moment, I was overcome with emotion. I realized my son notices so much he probably cannot begin to say all the things he observes. I felt so proud of him, and if I am honest, I was proud of myself. Instead of writing off his attempt to communicate, I listened to it. It was different than his sister, but he was engaging me as best he could.
That moment was transformative. I began to witness all kinds of tiny interactions he was making; I was oblivious to them because of my expectations of how it should be.
From that moment, I shifted and I write this in the hopes that you will too.
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.
“For as soon as an unexpected fact appears, we try to fit it in the framework of the common places of acquired knowledge and we are indignant that anyone should dare experiment further.”
– Paramhansa Yogananda, Autobiography of a Yogi
Yogananda’s quote regards the human approach to science and the nature of the universe, but when I apply it to the neurotypical understanding of autism, it seems to fit just right.
Autism is often unexpected by families. It is also commonly explained as a deficiency that needs lots of therapy and remediation, rather than a neutral neurological processing difference compared to the neurotypical processing. Our introduction to autism is usually one cloaked in words like “reg flags”, “symptoms”, and “disorders”. Because of this negative introduction, unwitting parents and caregivers are on defense for anything related autism.
Parents especially fear autism, yet understand their child is also perfect the way they are. Often they’re perplexed because they note the growth, intelligence and creativity of a child, but observed they’re markedly different than typical peers. This duality of understanding is the source of so much anguish and frustration. It doesn’t need to be this way.
This may also be due not just to negative explanations of autism, but also because people conflate autism with a form of intellectual disability. These two things are not mutual, though autistic people (and neurotypical people) can also have intellectual disabilities.
Here’s the entire quote from Yogananda, and just for fun, let’s pretend that this it is about the understanding of neurological processing differences:
“The truths- those surprising, amazing, unforeseen truths which our descendants will discover are even now around us, staring us in the eyes, so to speak. And yet we do not see them. But it is not enough to say we do not see them. We do not wish to see them. For as soon as an unexpected fact appears, we try to fit it in the framework of the common places of acquired knowledge and we are indignant that anyone should dare experiment further.”
– Paramhansa Yogananda, from Autobiography of a Yogi
If an autistic person’s behavior does not make sense to you please consider doing the following:
Observe the behavior without judgment. This will be nearly impossible, so here’s an easier way: every time you witness the behavior, check your thoughts to see when you are deeming something socially appropriate or inappropriate. Observe how you feel when you witness this. Consider your emotions as you observe. Are you uncomfortable? Angry? Embarrassed? Curious?
Once you’ve understood through which lens you are witnessing the behavior, be aware this is impacting your ability to “see” the behavior for what it is.
Behavior is a form of communication and for many autistic people, their bodies are important means to communicate when they are unable to verbally articulate their needs.
Ask the autistic person when they’re in a rested state what their behavior means. Often, they will tell you. If you interrupt to tell them why it is bad/wrong/unacceptable, remember that they will likely stop telling you in the future or find deep shame in trying to meet their own needs.
If the person is too young to explain or unable to articulate what/why, consider searching the web for autistic voices who can explain things. Do not ask when they’re overstimulated, as answering may be impossible in that moment.
A group that substantially changed my understanding of autism was the closed Facebook Group “Autism Inclusivity”. This is an educational group where parents and caregivers of autistic kids can ask autistic adults about behaviors and intentions.
Caution: read the rules and observe first. Learn about etiquette in safe spaces for autistic people. Ableism and sympathy for neurotypical people will not be present here; this is because most other every place in the world favors the neurotypical. Go there to learn and be amazed. Also, on my Instagram page, I repost daily tips from #actuallyautistic people and neurodiversity affirming clinicians and researchers. My handle is @sensationalstims.
If you want to understand autism, learn from autistic people!
3. Do you understand sensory differences? I didn’t. I am embarrassed to admit this, but I thought we all kind of had the same sensory experiences. Autistic people usually have heightened senses that, unless supported, are often overwhelming and can cause anxiety, fatigue, burnout, and meltdowns. Learn what your child’s sensory needs are.
I urge us to all remember how we were initially instructed about autism: we were trained to believe autism is a deficiency that needs adjustment, instead of a processing difference that needs support, especially for those of us struggling to understand an autistic family member, friend, student, or client.
Fill out this form to get a free resource to understand sensory differences and stimming!
Or buy my book The Case of Sensational Stimsto learn what stimming is and why it’s so important. Available online on Amazon, Barnes and Noble and Wal-Mart.
Thank you for being here. Getting curious is the first step to creating an inclusive, safe world for everyone, especially autistic people!
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. 😉
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.
If you’re on this page, you’re either wondering if your child is autistic or has just been diagnosed. This page is here because when my child was first diagnosed and I was so fearful of what the “A” word meant for him and my family and our futures, I scoured the internet and library looking for answers. I put them all here for you.
This blog is to help you understand autistic people better so you can help them thrive in a world that wasn’t designed for them. It’s to help you possibly prevent mistakes I made early on so that you don’t unintentionally harm your child. And mainly, this blog is to help anyone who knows an autistic person and genuinely wants to include them and make the world safer.
First, breathe. Relax. You know that baby you wanted and hoped for and loved? They’re still there. You just paid such close attention you realized they process information differently than neurotypical people. Your child isn’t broken! You noticed their needs and processing differences. You’re a great parent for doing that! Even if you didn’t do it right away, that is ok.
You probably noticed because their sensory processing is markedly different from your life experience and you began to wonder why.
Perhaps the sensory world your child is exposed to is stressful, or exciting, or overwhelming, or something else. Again: you noticed! You didn’t just say “Oh stop being so dramatic!”
Or maybe you did, but you realized some things, no matter what, cause issues for your child and are impacting his/her daily life. Whether they’re autistic or not, you’re probably here because you know there is something different.
These processing differences may be signs of autism, but if so, your child isn’t broken. This page is to explain what and how accommodations help a neurodivergent person thrive. We use appropriate terminology, unlearn harmful stereotypes and outdated terminology and practices, and evolve so that our loved one can be a happy, fulfilled person. Heck, you may even learn a bit about your own processing system or others.
I am so glad you are here!
What are the Signs of Autism?
Are loud noises, bright lights, extreme hot or cold, strong smells, textures an extreme sensory experience for your child? Does he or she deeply enjoy or fear or melt down in these sensory experiences and it’s not like a neurotypical child?
Does he or she love to get pressure (like a big squeeze or being in a tight space) or perhaps loathe hugs?
Does he or she have unusual facial expressions for the situation (maybe doesn’t look excited when there’s a big surprise or perhaps appears overly emotional for a basic situation)?
Does he or she have language delays or quite exceptional at language for their age?
Does he or she have the ability to focus on one thing for an exceptional amount of time without getting bored or perhaps watch and rewatch certain scenes or shows for an amount longer than what you’ve done?
Does the person display struggles with knowing appropriate body distance between others in a social situation?
These are all indicators that your child might be autistic and if at all possible, a formal diagnosis is important and very helpful. Notice how these indicators were not referred to as a “red flag” or “a warning”. A diagnosis is helpful, but do not confuse autism with a life threatening illness.
Autism is a processing difference, much like the difference between two computer types like a Mac and an IBM. Even though these computers can both do things, certain programs that work on one won’t work on another. Their interface is different. Perhaps you have a preference for one type or another. Obviously this is not a personal computer and I sincerely hope you won’t take your child back to the hospital because you wanted a Dell and not a Mac. Because the truth is, if your loved one is autistic, they were born that way. And you don’t need to mourn. It’s just different than what you thought.
Think of all the things you loved about your baby. Think of all the ways in which they demonstrate their love for life.
Imagine if the person or people who raised you thought, “if only they weren’t this way. I wish they were how I imagined they would be instead.” Ouch. That would hurt. Maybe some of us reading have had that experience.
Hoping a child would “overcome” the way they were born is a terrible way to live and treat another. This page is to find ways to celebrate who your child is and help them thrive.
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 Cameroneleven 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 Stimsis 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.
*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.
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.