Einstein, Autism, and You

Albert Einstein is a theoretical physicist famous for his relativity theory and shifting human understanding of science to quantum mechanics. He lived a profound existence and is one of the few internationally recognizable scientists, despite the fact that he’s been dead for decades. He was also very likely autistic.

It seems odd how autistic people are described by neurotypicals. Autistic individuals are often exceptional thinkers and wonderful humans. They also have flaws, as every human has. Biographer Walter Isaacson, after explaining his echolalia, “tantrums” and “inability to form a true bond” with his father, noted, “still, he was able to display empathy.”

For much of Einstein’s life, he worked even as World Wars threatened his life, as his first marriage crumbled, as his second son struggled with health issues his entire life and all the other issues that are typical of the human experience.

If an autistic person is on the level of Einstein’s achievements, neurotypicals often seem doubtful that he could be neurodivergent because he is so successful.

But even in his day he was deeply misunderstood by those who looked at him from a distance, and even a few close to him. It’s this misunderstanding that causes so much unnecessary harm. This post seeks to positively clarify how autism presents and uses Einstein as a prime example to celebrate the beauty and power of the autistic mind.

Einstein was so successful BECAUSE of his autistic mind.

Why do people Einstein was autistic? Here are 10 facts:

  1. From an early age it was noted that he displayed echolalia, which is when a word/sound/or phrase is repeated. Many people do this because it is soothing (like when someone is humming a song just for fun- that’s echolalia). It is especially common for autistic people.

2. Early on he also had many speech difficulties and would “practice” how he would say things with a mental script of sorts. Scripting is also common for autistic people.

3. It was noted in letters from family members that he had “the inability to form a true bond with his father”, which is something that people have long accused autistic people of: not being able to connect with others (which is wrong). It is probably more correct to say that autistic children often bond in ways different compared to a neurotypical child.

4. He had tantrums that caused multiple nannies to quit. These were probably not tantrums, but meltdowns caused by prolonged sensory/emotional overload. Later, as a grown person it was discovered that he had a slight allergy to wool. Several fans gifted him sweatshirts. He wore them often. He also didn’t like socks, which is also common for autistic people with heightened tactile sensory issues. He often appeared disheveled because he didn’t like to comb his hair (another sign of a sensory issue) and needed to wear comfortable clothing.

5. He was forgetful of items all through his life and depended on family and friends to help him get what he needed, especially when travelling. What’s interesting is that Einstein found people who did not chide him for this, but simply helped him when he needed it.

6. He loved sailing on water and could do so independently for hours. He never brought a life jacket or motor, even though he could not swim and lived before cell phone technology. A common autistic trait is finding deep peace looking at or being in/around water, even if it presents danger. Perhaps this is one reason why he is noted as saying, “I never think of the future. It comes soon enough.”

7. His grandparents knew he was “quirky” but noted that he was just as beloved as any other child. Einstein’s family was especially devoted to him. There never appears to have been a time when his family members tried to change him despite his “quirkiness”, which I think is a rarely discussed monumental advantage of Einstein’s and why he was able to find supportive people all throughout his life. Many autistic people are taught the way they are is “wrong”.

8. He also had severe gastrointestinal issues as an adult, another common trait of autistic people. He struggled to cook on his own (which is not uncommon for neurodivergent people).

9. His second wife nursed him back to health when he lost significant amounts of weight due to stomach problems. Their love was unusual and unconventional compared to others, (they were cousins, too), but they offered each other what they could; their love was mutual and genuine.

10. He loved music and he played the violin for fun. It helped him express emotions and work through challenging issues. Part of his genius was discovering the order of the universe, and music no doubt is proof of that.

Music is universal in how it helps with these things, but neurodivergent people who struggle to verbalize often use music as a means of communication. He played with his sons as a way of connecting with them.

It was his ability to get lost in deep thought, in music, nature, and science, regardless of deeply worrying circumstances sometimes surrounding him, which led to breakthroughs the world had never previously known.

If these facts don’t sound like an autistic person, then I don’t know what does.

Einstein had incorruptible skepticism and independence from others. Despite dozens of teaching rejections he continued his pursuit of the theory of relativity. He was even denied the job of being a high school math tutor early on in his career. He also was given credit for helping create the atom bomb, even though he tried very much to avoid use of this type of weapon for moral and ethical reasons. He worked diligently to have scientists and policy makers talk before using such a weapon, but to no avail. Political leaders dismissed his quest for international cooperation and peace as “wooly headed and naive” and almost “childlike” in his requests. Some called him a communist.

The irony of being the man responsible for the bomb and also attacked an not intelligent enough to understand the politics of humans is not lost on me. His final years on earth were used to try to right the wrongs of such use of force. This type of impossibility had frustrating, but Einstein didn’t appear to waste time being mad about it. .

This is a similar situation that autistic people face on a regular basis. For example being accused of knowingly breaking some social customs because they’re “too smart” to not know, but then are infantilized and not considered smart enough to make personal choices for themselves.

He continued on despite what others would have likely used as evidence they were not worthy enough. This is another key indicator he was autistic: what social pressure would have broken an neurotypical’s resolve was almost inconsequential to him; it didn’t occur to him to be meaningfully bothered by someone else’s judgement!

In the early days of Einstein’s rise to the stardom, many anti-Semitic scientists accused him of being a disrupter with no respect for the work of Newton and other accepted “truths” in the scientific world. Einstein’s work towards the truth, despite the hatred hurled towards him is precisely what makes Einstein so magnificent. Also, autistic people seem to have a keen advantage in this realm of social dynamics.

Einstein had intense focus and unending interest in thought experiments. He was unaffected by social expectations and his entire life he refused to conform to authority’s expectations merely because they were the authority.

What usually can psychologically crush a neurotypical is a non-issue for an autistic person. Don’t get me wrong: autistic can people notice when others are rude and disrespectful, they just don’t let it affect who they are. It is not their concern. This is a gift to be cherished!

Perhaps Einstein was very aware of things he could possibly change, and things he could not. He was clear on his passions and tended to them. He loved his family, and also accepted there were issues in his family that he had no control over, like other people’s life decisions. Is this a weakness or a strength?

It is time we began to talk about autistic strengths on a global level. This neurotype is the kind that revolutionizes the world, if only we support autistic people at a young age. One way to do so is to learn from #actuallyautstic people. Google it. It’s a thing. Refuse any work that attempt to stifle or eradicate autism.

Einstein’s behaviors and unique processing are reasons why he was not only one of the world’s greatest scientists, but also why he was a formidable social justice advocate in a time where people like him were being hunted by Nazis.

Einstein understood his gifts and limitations. He said of himself, “I have no special talent. I am only passionately curious.”

Foster passionate curiosity in your children, especially your autistic ones!

Follow this blog or @sensationalstims, or read my book The Case of Sensational Stims to get tips about autism support and empowerment.

How Should I Tell My Child They’re Autistic?

“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. 😉

A book for everyone who loves autistic people.

If you don’t know what stimming is, you probably don’t understand autism very much. 

If that’s the case, you need The Case of Sensational Stims.

It explains stimming so simply, even children understand how to support their friends with autism.

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. 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 of those words 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 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. 

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 a bad fall. 

His language was different, but I could understand.

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! 

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 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

Buy it today!

Understanding Stimming Means Understanding Autism

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

Autism and Standard Pediatric Development

“Life is not linear. When you follow your own true north you create new opportunities, meet different people, have different experiences and create a different life.” -Ken Robinson
Autism usually doesn’t follow typical pediatric development and this is usually why parents are so alarmed at the possibility of an autism diagnosis. 

The autistic child is a-typical. They are the minority neurological type which means their way of processing the world falls outside the norm of neurological processing.

Autistic children tend to not develop typically, which is usually how parents are tipped off that their child is autisitc in the first place. 

When children fall outside of the standard development time frame of speaking, writing, walking, etc, parents are fearful (unless of course the milestone is met early, in which case their child is a genius). The fear of autism is largely rooted in ignorance and the way many medical professionals describe autism. They say things like “red flags” and “treating autism” and “suspect a neurological disorder” and other such turns of phrase that can scare an uninformed parent witless. 

Doctors are usually amazing, but the average pediatrician do not know much about autism save a few hours of (likely) outdated instruction from a textbook unless they have a personal relationship to an autistic person or took time out of their busy life to learn on their own. 

Development and growth of a child, especially an autistic one, should not be compared to that of a neurotypical child. But developmental milestones are based on the standard and anything that falls outside of the standard progression is almost always the concern.

I am not a medical doctor, so please do not use this for medical advice. My page is a starting point to get people’s mindset shifted. This exists to help people who care to reframe their thinking about neurodiversity.

This page is to help anyone who knows autistic people but doesn’t know what autism really means. Better questions to ask if your child falls outside typical developmental milestones might be:

Is my child learning?

Are they growing?

What do I know about autism?

Is my child distressed often over things that aren’t a big deal to me? Figure out what you know and why you think what you do! 

Usually parents notice sensory differences that prevent a child from interacting with his/her environment, which can prevent growth. And when this happens a parent will say “I don’t understand” but what this usually means is: “I liked this thing when I was their age”, or “other children love this”, or “I was told this is the right way and my kid isn’t falling in line”, or “this isn’t making them happy and it doesn’t make sense”, or “other kids are already doing this but my kid is not”.

The parents who struggle the most with the possibility of an autism diagnosis tend to be the ones who are unwilling to adjust their perspectives.
A struggling parent usually leads to a child that struggles.

An autistic child is a unique individual with their own needs. Figure out what they are. Once you meet their sensory needs and your child is regulated, watch them blossom. Enjoy your child for who they are, not who you imagined they would be.

Please like and share this post with anyone who might benefit.

Follow @sensationalstims on Instagram for daily tips and support!

I think my kid has autism, what should I do?

Congratulations! You noticed! 

  1. Your child isn’t broken so you don’t need to fix anything. Avoid therapies and remedies that claim they can reduce the autism in your child. I’d rather you burn your money than spend it on that garbage. 
  2. You probably simply need to accommodate their unique sensory needs and support them as they grow (like any other human being needs). This might mean noise canceling headphones or earbuds (for noise issues), sunglasses (if their light sensitive), clothing that feels good (not too itchy/rough/loose/tight- just depends on their need), maybe go slower than you thought, maybe a visual schedule to help them understand, maybe an AAC (augmentative and alternative communication) device. Don’t worry, you’re not cheating or making excuses. You want your child to be able to engage and learn in the world and there’s only one way to do it; support them. 

Your loved one’s supports might change over time and perhaps some will eventually be removed. Support helps someone thrive. It’s likely different from what you expected, but it’s not bad to need support. You might need support too because you’re in uncharted territory.  

  1. Pursue an official diagnosis because it guarantees supports and accommodations in school. Start with a pediatrician. If your pediatrician dismisses your desire to determine if your child is autistic (and this is especially prevalent for autistic females or children who do not seem “severe” enough) please get another doctor.  

Many parents fear an autism diagnosis because their child “doesn’t seem autistic” enough or whatever the way they understood autism before their own child was diagnosed. Some people -even doctors- still use outdated functioning labels like “high functioning” or “low functioning” or “severe”. Please don’t use those terms. Would you like it if I referred to you as a low functioning neurotypical person? Or how about a high functioning allisitc? 

I won’t belabor this post defining these terms you could easily google. A better way to refer to your child is one with high or low support needs. If your child has “high support” needs, a professional will likely encourage you to pursue a diagnosis. 

If your child has “low support needs” you will likely encounter more roadblocks to a diagnosis. Here’s why:

  • The age of your child: has he/she learned to mask their self in order to receive praise/blend in? This is a common autistic experience
  • The gender/ethnicity of your child: girls tend to get missed for a variety of reasons. So do non-white children. Keep a journal/stick to the facts.
  • Is your child thriving right now? If so, some people will dismiss an autism diagnosis because “they’re doing so well’. Awesome. Also a diagnosis helps you understand a person and their unique needs and processing. If you feel uncomfortable with a diagnosis, that might be a “you” problem. 
  • Do you have disposable income?
  • Where have you learned about autism? Start by following autistic people. Google an autistic person’s blog or follow #actuallyautistic or Autism Inclusivity on social media. Listen. Do not type the first question that pops in your mind. Observe. Unlearn. Be open. You will or have already made mistakes. Who cares? We all have. Move on and do better when you know better. 

Could My Child Be Autistic?

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.

Testing and autism

The testing that many autistic children receive to obtain an Individualized Educational Program (IEPs) can be a helpful barometer to determine areas of support needs. Sometimes, these tests are flawed.

Autistic children often get tested to determine areas of support. Though these tests can be flawed, they are important. Services are significantly more affordable if assessed by official state authorities. Caregivers who are scared or overwhelmed by this process, this post is really about empowering you with information I wished I knew when my baby was being assessed.

While we can debate about if this testing system is right or fair or even good, at this moment in time, that’s not what I came here to discuss.

Obviously the system is flawed. There are a million parts to the system that with a slight tweak, could transform the educational experience for children and their families.

I am talking about things like making sure a child is regulated before testing them. I am talking about educating parents and providing therapy for them, too. I am talking about providing support for teachers so that they are seriously able to accommodate an autistic child in the least restrictive environment, genuinely and consistently, with no shame or wasted energy if and when they ask for help.

This part of the post is here because sometimes conversations can turn into a philosophical debate. Even people who fundamentally agree can vehemently debate each other and lose sight of the entire point. I’ve seen it a million times and I bet you have too. Mothers arguing over who is “right” for unique situations that have nothing to do with each other. Professionals who claim to know the best course of action.

On one autism support group, I anonymously shared about a social situation that happened with my husband and autistic child, asking for strategies to help my husband better support our child. Several group members instructed me to divorce over the incident. Their solution, in my time of despair, was to blow up my family unit. While sometimes starting over is the right thing, in this case I asked for ways to make my current situation better with the resources I currently have available.

It is easy to have the entire point missed in these online groups because keyboard warriors make sweeping declarations, oblivious that they are devoid of particular realities or factors that cannot be transmitted electronically.

I hope this blog never becomes something like that. The purpose of this blog is to imagine and then implement ways to support autistic people.

Most change happens when we all have a common understanding.

Most change happens when people understand nuance.

Most change happens when people patiently work towards a clear goal, not get distracted by complainers who lament all the things that “should” be happening.

When we focus clearly on where we currently are and where we need to be, nothing in the world will stop us, not even a deeply flawed, powerful system.

While there is no doubt overhauls in so many areas are needed, I am a lover of history and sports. It’s my understanding that the most influential change-agents cleverly, enthusiastically, and passionately find ways to win in the game that they’re playing. The school system is not that different.

If your child is being assessed in a current school system, it is tempting to feel like a victim or out of control.

There may be a lot you don’t know about the system, or autism, or I’ll be honest (and this is from personal experience): you may have parts of yourself hidden deep down that are beginning to surface. You may be grieving, mourning, angry, scared, isolated. If this is the case, you need to honestly look at why that is happening.

You will not die from this process. It might feel like it. I had my first panic attacks from this process. I promise, you will not die, but you will need to ask for help if this happens to you.

Breathe deeply. Take care of yourself. And determine what will “winning” look like for your family.

You’ll be stretched because for most of us, we haven’t had to dig more deeply than “getting a good education and having a good life.”

For most autistic people, their education in public school was not good. You probably already have a sense this, and this is why there is fear, anger, sadness, and resentment. Maybe you just never looked closely because it was not personal for you. I know those feelings are big, but if you have them, use them as fuel; do not let them consume you.

The teachers, administrators, other people aren’t the problem. Do not make them your enemy. More on that later.

You want to “win” this game and we need to define what that is. In this case, it means helping your autistic child thrive in a system that was not designed for them. To win, you must become an effective advocate. Don’t worry; you can begin in a free way, right now, with one step.

No matter if you are just getting started in the assessment process, or knee-deep in the system, you become an effective advocate by asking good, honest, thoughtful questions.

Ask them of yourself. Ask them of your support team. Ask them of your child.

You might not feel confident in how to advocate in a collegial way, I know I still struggle. But asking the right questions is life changing.

Here’s a real example of high level questions in action:

“Why can’t my child sit still in his class? Oh, he has significant proprioceptive and vestibular needs due to his autism? How do I support that? Who can help him with those needs at school? Can we make sure he is not getting in trouble for needing to move the way he does because of his unique neurotype? Who is educating the teacher about his needs? How can she get resources more easily? How can I help you help him have a great school experience?”

When I asked questions like that, without shame or blame, I pointed myself and the team to solutions. I learned, and so did the team supporting him. It required them to articulate what they were doing and more importantly, it helped them become aware of what they weren’t doing, without shame or blame.

Nothing about a disabled child in public school is simple or easy. What does “good” look like for your autistic child, not a neurotypical one. When you can define what a successful learning experience for you and your child, everything transforms not just for your kid, but honestly for the entire classroom. This is how we can make significant changes to the powerful, flawed system, right now.

You will get more adept at advocacy, trust me. More importantly, trust yourself. It will sometimes hurt because you’ll make mistakes. Some people you should trust will break your heart. Others will restore your faith in humanity.

Remember to be flexible but focused; adjustments are needed to support a growing child thrive in a system that was not designed with their needs in mind.

Testing Flaws

An IEP (individualized educational program) is a serious undertaking of time and resources and is usually only performed because there is a concern about developmental delays or noticeable learning deficits. Very rarely are these ever done because there isn’t a “problem”, when it comes to performing in a typical American public school.

The intent of this post is not to argue about the validity of the American educational system, but to discuss the system as it currently exists, in an effort to support autistic children right now, not later.

Though I love philosophy and discussing the future of public education, that wont help kids like my 8-year old, and thousands of others get a robust education. But one of the test results said my third grader’s vocabulary level was that of a kindergartener. This is a child who speaks about animals foraging, migratory patterns, unique camouflage of animals, knows the continents of the world, and a variety of other things. Though he may have language issues, his vocabulary level is not one of them.

But I’ll give you an example of what might have happened when he was being tested for vocabulary levels.

Once when we were reading a book, he was struggling to read a word he just read on the previous page. As a hint, I told my child to “go back to the last page to see the word you just read.”

With a quizzical look, he flipped to the last page of the book, not the last page he read.

Because many autistic people often interpret language in a more literal way than non-autistic people, he couldn’t figure out my hint, even though he technically did what I said.

it is also common for autistic people to struggle with auditory processing, as is the case for my child. Sometimes he mishears words, or it takes him longer than average to respond to verbal communication.

This is one reason why autism is considered a disability.

So what does a parent do when they’re told their child is deficient in a category where they know their child is not deficient?

Should I speak up and challenge it?

Does it matter? He is “low” for his age in a variety of undeniable areas. Will I be perceived as difficult? I want these people to want to work with me. I don’t want to be “that” parent who argues and nitpicks.

But I also want to see my child for who he is. It’s not my job to ask them if he was dysregulated when he was tested. Or is it my job? Was there a ton of sensory input before he was assessed? How was this test given in the first place? Was there reading involved?

Because if any of these are true, you’re not going to get a good snapshot of his ability.

It’s difficult for even an educated, motivated person like myself to address these questions politely.

I am not confident in how to advocate in a collegial way because the truth is, I don’t know these people well. And it hasn’t been modeled much for me. As a teacher, I have worked with parents who are downright awful.

In retrospect, I can now see their horrible behavior for what it is: rooted in fear. They’re afraid what their child’s disability means for their future. And as a young ignorant teacher, I didn’t know how to meet them where they were.

If I am totally honest, I probably exacerbated their fear because I was defensive and exhausted. It’s hard to be a teacher, let alone focus very closely on one student. I know- I am one. I am motivated, and extremely knowledgeable about IEP services and it’s still one of the most challenging aspects of my job as a general education teacher. I shudder when I think of ableist educators who commonly populate the general classrooms in our nation.

Conclusion

Nothing about an IEP is simple or easy. It is a complex, flexible plan that will be adjusted many times in order to help a growing child thrive in a system that was not designed with their needs in mind.

This plan will change a child’s life, and teachers would do well to treat it like a sacred document.

And parents? You’re part of a team. Trust your team.

Professionals? You’re part of a team. Trust your team.

Believe the best. Ask for help. You must. It will take a village to help these innocent ones thrive.

Testing and services for disabled people are powerful. Act like it.

What are the best ways to support my autistic child?

Here are some common questions people have about autism and answers I wished I had when my child was initially diagnosed in 2016.             

  1. What are the best ways to learn about autism? Learn about autism from the experts: autistic people. Follow #actuallyautistic people or check out NeurodivergentRebel.com. I wished I had done this first.

When you learn about autism from people who are actually autistic, rather than those who are “experts” who’ve only observed autism, your understanding will profoundly change for the better. How will your understanding change if you learn from autistic people about autism?:

Instead of fearing this “mysterious” puzzle-like situation going on (as it is often presented by clinicians), you will be amazed at the beauty and power of neurodiversity. There are many autistic adults who are proud of who they are and gladly share their stories with you. Search #actuallyautistic on any social media platform and prepare to be amazed. Many autistic people are incredibly articulate and often their “inability to communicate with others” was actually just a misinterpretation on the part of people in power, like Braus. But I implore you, please just listen.

Process later.

And don’t argue with the real experts about what being autistic means. Only autistic people are in a place to explain their experience.

  1. How do I learn about autism? Remind yourself that you’re trying to learn about a neurology that has been brutally pathologized for a long time. Your core beliefs will be challenged and it’s normal to be uncomfortable. 

Many of my fears about autism were unfounded because I took a clinical approach to my understanding. Autism is still medically referred to as a disorder (Autism Spectrum Disorder), not a different operating system (think Mac vs PC). In your quest for information about autism you might not “see” any answers because of an inappropriate approach that autism is a disorder. It’s not. It’s just a different order than many people are accustomed to. I now refuse to call autism a disorder. Autistic people are in perfectly fine order. I just didn’t comprehend what I was looking at because I spent way too many hours reading clinical studies about how different it was from a specific neurotypical standard that was set by neurotypicals.

Autism is not a terminal disease. But it’s often treated like that because of how “experts” like to talk about it. “Tell-tale signs” or “symptoms” are not called traits.

  1. Parenting and autism. Autism isn’t a moral failing on the parents’ part, nor a choice by your child. If you find yourself feeling like a failure or wanting to blame your kid for “misbehavior”, see #2.
  1. What are the best ways to help my child who is autistic? Autism presents differently in each person and is dependent on their support system and unique needs. A parent who helps their autistic child helps them build on their strengths and honors their unique needs. If you only focus on deficits, that is all you will see and that doesn’t actually help anyone. 
  1. How do you know if a therapy is right for your autistic child? If you’re not sure if a therapy/treatment/doctor is right for your autistic child, just replace “autism” in their advertisement with any other inherited trait and see how it sounds. “Curing Brown Eyes with Natural Supplements” sounds pretty stupid, huh? How about “Fighting Irish Heritage with [insert name of ‘expert’ doctor here]”? You can’t cure your inherited traits and you don’t need to. 

Hope this helps. Follow @sensationalstims for more info!

Helping Autistic and Neurodivergent People

This is a glossary that is available in my latest work The Case of Sensational Stims.

Included are many terms and concepts I wished I had known when our child was diagnosed as autistic.

If these can help one family better support their neurodivergent loved one, then this effort was not in vain. You can download, print and even make text bigger by clicking the + button on the documents below.

These pages and more are available at the end of my latest book The Case of Sensational Stims. Order it today on amazon! See more at sensationalstims.com

PS- Thank you to Ashlyn Garrett for designing this. Check out her portfolio!