Autistic children can develop intense fears and phobias when compared to their non-autistic peers, and facing them– or even the threat of facing them– can be traumatic. Much like everything else in society, the approaches typically helpful for children (generally, any child) are not suited to help autistic children.
Autistic children have different kinds of brains, wired differently, with parts that are more or less developed or connected than type brains of neurotypical kids. That’s a gross oversimplification, but the differences are neurological, very real, and they mean that their experience of the world is different.
In life, that can mean a hundred million ways that people experiencing the same things are affected by them differently. For example, an air horn going off behind you unexpectedly isn’t going to affect you much if you are completely Deaf, or a photo flash if you’re completely Blind. But, for those who do hear and see, the impact of an air horn or bright flash of light will be experienced differently by everyone.
For some whose sensory systems are highly attuned, the experience could be traumatizing.
As a disclaimer, this resource has a lot of recommended articles and content for further reading. I did this to give those who are new to understanding autism a “mini course” that can be bookmarked and referenced later.
But, Autistic and Non-Autistic People Are Similar in How they Respond
The thing is, autistic people do behave the same way as neurotypical people in reaction to intense stimuli. They’re just experiencing much more intensely, much of the time.
Telling an autistic child to stop being traumatized by a fire alarm will not stop the trauma, but it will make them learn to pretend it doesn’t affect them as much. Behaviorists call it “distress tolerance.” Autistics recognize it as learned helplessness.
They stop trying to advocate for their needs, like a neglected infant with “failure to thrive.”
Why Autistic Kids Develop Strong Fears and Phobias
A phobia and a fear are different. Phobias are fears that are not rational in their intensity or their subject matter. I once had an 80-lb. pit bull who was extremely terrified of socks. Any sock– even a little crocheted doll footie sock. If I put a sock in the threshold, and put bacon (his favorite) on the other side of the sock, he would not jump over it or move around it to get the bacon. This was a phobia, as it was not rational.
I have a severe fear of stink bugs, but I’m not going to call it a phobia. They don’t bite, they don’t attack, and they generally don’t have the power to cause me any substantial or lasting harm. They just stand around and look like a little tank on comically-thin legs. BUT, I’m giving myself the grace to acknowledge that there are two things about them that make me terrified for logical reasons.
First, they seem to be attracted to spaces where the oils from fingertips might accumulate– window latches, door knobs, sink handles, alarm clock buttons, phone screens, tooth brush handles, etc. I startle easily– so easily, that I’m never able to relax unless I’m completely alone because of the fear of being startled.
I startle to such an extreme that I scream at the top of my lungs and then break down into tears. This can happen several times per day, and the more it happens, the more “high strung” I become. So, when I go to touch something where my hands tend to regularly go, and something moves beneath my fingers, I startle to an extent that is traumatic for me.
The second reason my fear of stink bugs is logical is because of tactile defensiveness and my extreme aversion to light touch. My skin cannot handle it, like when a hair touches the backs of my arms. I have to wear tight-fitting sleeves or heavy shirts at least to my elbows– all day, every day. I have to wear compression garments under my shirts because I can’t stand fabric to lightly touch me. The gripping legs of an insect on my skin are unbearable.
I have phobias, too. Irrational fears. I’m afraid that kitchen cabinets have too much weight in them and will fall off the wall and bring parts of the wall with them. I’ve never seen this happen, but it causes a lot of anxiety, nonetheless. This may have something to do with my fear of things breaking and not having the executive functioning or the funds to have it fixed (more on phobias in the next article).
Autistic Fears Are NOT Phobias
While autistic people can have intense fears about everyday life, they are not always phobias, even if they seem irrational. Their fears, their highest pinnacles of unadulterated joy, all the big emotions– they’re no different from yours. They are just a lot more intense and more intensely mitigated by social involvement.
Yes, you are a mitigating factor for phobias.
To illustrate how social involvement can mitigate how a person experiences something in a way that should be universally understood, imagine attempting to tickle yourself. Not much happens. It feels like you are just giving yourself an awkward massage.
But, if someone else tickles you, it’s a very different experience. And everyone’s thresholds for being tickled are different. People can laugh and simultaneously be so overwhelmed they punch and kick to get away. They’re not violent, they’re just very overwhelmed to the extent they’ve lost temporary control. Others are not ticklish at all. Some people will scream laugh just from the possibility of being tickled.
Being autistic is much like that. There are sensations that most people barely register, but an autistic person may feel them to such an extent that it’s overwhelming.
But, if you can understand how everyone responds differently to being tickled, from terror to apathy to even finding it so enjoyable that they pay people to tickle them (no judgement)– then you can understand autistic people reacting very differently to what you experience as mild.
The Faces of Autism
Let me show you something. I typed in “autism” in a search, and these are some of the first pictures of humans that came up in my stock image subscription (after the wall of puzzle pieces and awareness ribbons):
Yes, these are four young, white boys– a large part of why the mainstream doesn’t have a broad understanding of autistic people. But you can see that they all have “big mood,” and they are happy.
The above are more of the “sad” end of the range of emotions. Covering their ears or faces, or putting their face against something. Most of the pictures of “autistic” or “autism” were children expressing a big emotion.
But, let’s look at how non-autistic people look when experiencing big emotions:
Covering their ears and eyes to reduce sensory input, self-injuring by punching a wall or pulling their hair… I can imagine the first person is probably even rocking. These people are doing what autistic people do help regulate overwhelming sensations and emotions.
Suddenly, everyone looks a little autistic, right? Autistic people will probably think that was funny. Inside joke.
Why are they covering or closing their eyes? They’re reducing sensory input so they can process something difficult to digest. Why are they touching their faces or heads? They’re trying to provide proprioceptive feedback so they don’t lose their bearings in space and time. If you’re unfamiliar, you can learn about proprioception, interoception, and the vestibular sensory systems in this article.
But, that lineup would look like how you imagine autistic people, right?
With almost all of the “joyful” images, people either hand their hands on their faces or in the air. This isn’t too different from “happy flapping,” which is something autistic people do to regulate a “big mood.”
Many of these involved hands and arms being involved in grandiose gestures (flapping, y’all), and closed eyes. Some even had their ears covered, too.
What’s the Point?
The point is that these reactions are what people conceive of as autistic reactions. These expressions and behaviors are easy for everyone to understand if people can understand WHY they are happening.
And because this is a very important point, please allow me one more example.
You come upon the scene of a car accident. The front of the car is badly damaged. Paramedics are working on an adult woman who appears to be injured and not fully conscious. A child, approximately 13 years old, is sitting on the curb, his hands on his head, rocking back and forth and mumbling to himself. He has no visible injuries and does not seem to be in physical pain.
Given the context, you can assume that this may be the boy’s mother or at least a relative. Because the car was hit from the front, you assume that the driver was injured, but the child was probably in the back seat. You understand his behavior and find it completely reasonable. You know that there is a totally logical reason for this child to be extremely upset, and you can empathize with why.
You don’t think the child needs to be trained to express himself more appropriately, or to not look “weird.”
Because you’re a good person, you think that you might go and try to provide him with words of comfort and reassurance. One of the first things you may do is ask a paramedic what the status is on the woman’s condition.
You know that if her vitals are stable, she doesn’t appear to have any broken bones, and she is responsive, that you will have hopeful news that you can communicate to the young child. If the outlook is not as hopeful, you will still try to come up with ways to explain the situation and what happens next, because you know that a lot of the worry is caused by uncertainty.
Now, imagine the scenario without a car accident– or any obviously upsetting stimuli in the environment. There is just a person sitting on the ground, covering their ears, rocking back and forth and mumbling. Without the context, your reaction may be very different.
Autistic Context is What Non-Autistic People Can’t Understand. You can’t make reasonable assumptions about why autistic people are doing what they’re doing.
Non-autistic people do understand a lot of autistic expressions and mannerisms, as you can glean from the images above. But, non-autistic folk lack the context to understand those behaviors as meaningful or valid.
You probably do things autistic people do, too… just not as often.
If you stuck your hand into your purse or laptop bag and there was something extremely slimy, mushy, and unexpected in there, you’d likely pull your hand away, flap your hand even if nothing was visibly on it, rub your hand to kind of erase the sensation, and maybe even dry-heave, take a bunch of really fast steps on your tip-toes, or shudder.
See it yet?
If your name were drawn in a raffle to win five million dollars (or whatever your currency is), imagine your reaction. You would likely be flapping your arms like a hummingbird– or at least you could understand why someone would.
If you’ve ever been in love, you are likely to have walked around on your tip-toes, twirled your hair more, been more restless, had trouble eating or sleeping. That’s because your nervous system was responding to something intense– even if it was positive. Those are all behaviors associated with autistic people, but they’re only “weird” or a problem when autistic people do them.
Similarly, autistic behaviors are logical responses to intense stimuli, but you can’t see the context.
What you may be seeing as an “abnormal” reaction is merely you missing many things that could have happened to cause the seemingly-overblown reaction. This helpful article by English teacher and autistic advocate Pete Wharmby can explain some reasons an adult autistic person may be in a “bad mood.”
You might have missed these social or sensory indicators, for context about why an autistic child has what you regard is an irrational fear:
-Several times in recent history, while the autistic child was riding in the car, mom was singing loudly in a way that was causing distress, little brother was pecking on their shoulder to annoy them, mom became angry and frustrated with the “tattling” and being “ungrateful” for being taken to a party, and the child melted down in front of her friends because by the time she arrived, she was already overwhelmed.
-Every time you make spaghetti, dinner is filled with slurping sounds and the sounds of dad’s knife scraping his plate as he cuts his spaghetti into bite-sized pieces. Mom gets frustrated that even though the child is 10 years old, they always get food stains on their nice clothes— a reality many autistic people will associate with long pasta.
-Earlier in the day, the child wore a new outfit they really wanted. The outfit had uncomfortable seams, though, and the material was scratchy. They wore the outfit anyway, because they really liked it and didn’t want to seem ungrateful to their parents for buying it. They couldn’t focus on what the teacher was saying, though, because they were so uncomfortable. They got a bad grade on an assignment and later were yelled at for not following directions.
-There was a fire drill at school, and it startled the child so badly that they froze in place. People had to physically lift them to get them out of the classroom, and that was terrifying and felt like restraint. It was also humiliating because classmates didn’t understand what was happening.
-They told a joke to a new friend, but the friend did not find it funny. Instead, they were offended and took the joke as a personal insult. The new friend then told others that the autistic person was mean, manipulative, etc., and everyone seemed angry at the autistic person. The more they attempted to explain, the worse the situation became.
These are just a few of an infinite amount of circumstances that can lead what most people consider to be “everyday” or “mild” stressors to be actively traumatic for an autistic person.
An autistic person is likely to be carrying anxiety and trauma from a lifetime of missed social cues and of social consequences for experiencing the world differently from the people around them.
Autistic People Are Overwhelmed as a Matter of Existence
When we talk about whether or not autism is a disability, many people will be surprised to see that most autistic advocates are vehement that it is, always, a disability. It’s not inherently disabling to struggle with loud noises, but it’s disabling if no one else understands or believes you about why you are so stressed by sounds. It’s disabling when a loud bell rings on a schedule to disrupt your thoughts right when you were beginning to understand or master a task– ten or more times per day for all of the school years.
It’s not inherently disabling to struggle with motor coordination, but it is if teachers give you poor grades or see you as a behavior problem or as lazy if you struggle with handwriting, crafts, scissors, certain activities in games and gym class, etc. It’s disabling if your parents think you need to just try harder to be better at sports.
There are hundreds of ways that being wired differently from the majority will cause stress and anxiety for an autistic person– every. single. day. This is why many autistic people develop avoidance to even activities that they would love, enjoy, and embrace if the circumstances were accommodating.
What to Do to Reduce Phobias and Fears
Whether something is a phobia or a fear is going to be difficult to pin down when the person experiencing the strong aversion is autistic. They may be irrational or over-reactions, but it is always safer to assume that the anxiety is perfectly reasonable. It’s possible the autistic person can’t express for a number of reasons:
The autistic person may be too young or may have delays in having the language to express why they are reacting so strongly. They may just not be developmentally in a place to express and self-advocate. Or, they may lack adequate access to AAC.
Try working with a great OT, SLP, or other therapist to help identify the sensory and social triggers and the processing differences that may be causing anxiety. An SLP can help to provide your child with communication tools.
Choosing a therapist who understands your child can be stressful because there is a lot of potential for abuse– intentional or not– against disabled people. Even if it’s a type of therapy that autistic people recommend, like OT, the therapist could be using harmful strategies. This guide should help you to identify which therapists are helpful or harmful.
If you’ve never heard of alexithymia, this is a problem! Autistic people can’t always understand their feelings or identify them. They may feel “negative” or “positive,” and not anything more specific than that. Non-autistic people can also experience degrees of alexithymia, but most autistic people experience it to an intense degree.
YoSamdySam does a great job of explaining alexithymia in this article and the following video:
Michaela Morgan explains alexithymia in depth in this article. From that piece:
I am often also impaired in my ability to perceive and understand the emotions present in others, which means that my responses are misdirected, misplaced, or lacking entirely.
It is 12pm, and I am (relatively recently) fed and watered. My stomach is bubbling, and I cannot tell why. Am I hungry? Thirsty (still?)? Sad? Anxious? Perhaps I forgot to take one of my medications? Did I have enough to eat for breakfast this morning? Or am I sick?
Because I am unable figure out the answer, I will often run through a checklist of actions– taking pills, eating more, drinking more, reflecting on everything that has happened to me recently in an investigative effort to pin down the cause through a process of elimination. Sometimes I have help, but it doesn’t necessarily make any difference.
Here are two more resources that can help to work with accessing emotions when one has alexithymia:
Autistic people should be understood as autistic and accommodated as autistic their entire lives. Sadly, due to the deficit model of autism that is proliferated and thrust upon families– or due to the lack of involving actually autistic people in researching and defining what it means to be autistic, autistic people and their loved ones are denied access to meaningful self-knowledge.
Even if you are autistic, you may have never thought of or heard of some of the information and insights in this article. Alexithymia may be a phenomenon that, when understood, can give someone life-changing control of their emotional health and tools to navigate the ways they are different.
To have self-knowledge, that means people have to be describing what it means to actually be autistic. Otherwise, you learn how people are (in general), and the experience of the general population doesn’t apply to you.
Yes, all people can experience sensory overwhelm. Yes, all people would prefer to wear comfortable clothing and no one wants to wear a scratchy sweater. No, all people are not traumatized by experiencing hundreds or thousands of unpleasant sensory, social, and emotional stimuli most days of their lives.
So unless autistic people are told that yes, they do have a reason to be bothered by sounds or light touch or smells that don’t bother others– then they will just internalize that they are being ungrateful, selfish, and rude for trying to talk about their very real needs. This may even contribute to worsening alexithymia.
For this reason, autistic people need to be exposed to the experiences and writings of other autistic people.
In this round-up of content from Sumayya Hassan, there are links to many pages, vlogs, resources, and social media posts and dedicated advocacy accounts. It’s a great page to bookmark in order to follow lots of autistic people and learn about their experiences.
All autistic people are different, so it’s helpful to learn about autism by reading, listening to, and watching content from lots of creators. It will also help to send these great materials to others so that they can learn.
Accommodations Every Time– and NO Gaslighting
If an autistic person tells you that sounds are stressing them, don’t tell them that they are being too sensitive. Don’t try to sensitize them to the sound thinking they will get used to it. They won’t. They’ll just be ashamed of how they are wired.
Give them accommodations– like not having to be exposed to the sound, ear defenders (many autistic people recommend Vibes brand), noise cancelling headphones, or access to volume control.
This will not “spoil” the autistic person or “enable” them. It will “empower” them to learn how to exist in the world without so much unpleasant stimuli. It gives them access to tools– like eye glasses, hearing aids, or crutches for more obvious and better understood disabilities.
Here are some helpful resources for understanding how autistic people are gaslighted because others don’t understand what it means to be autistic.
Many autistic people struggle with uncertainty. Processing too much new information too quickly can cause even an enjoyable activity to be extremely stressful– like a birthday party or a sleepover. Knowing what to expect, or why things happen, and being prepared for what makes them stressful gives the autistic person the self-agency and self-determination to troubleshoot their own struggles and how to fix them.
In the next article in this series, I’m going to be tackling this one in more depth as it’s extremely important for accommodating and supporting autistic children and adults. I’ll be teaming up with an autistic meteorologist to demonstrate using science to overcome intense fears and to empower autistic people to use their strengths to their own advantage.
On the forecast is an article about astraphobia, or the fear of thunder and lightning storms. Stay tuned for that piece coming up later this week.
- Helping Your Autistic, ADHD, or Dyslexic Child (or Self) with Reading Fluency - July 29, 2021
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- If not electroshock at the Judge Rotenberg Center, then what? Try access to communication - July 13, 2021