Sensory Stories by Nicole
@sensorystories_
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Helping parents and neurodivergent adults find answers related to their ND struggles.💡 Free resources available on my website ↙️
Michigan, USA
Joined June 2009
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If you are learning about autism for the first time, it's most likely not what you think it is...
Autism sometimes shows up in ways that are obvious, but for most autistic people, our autism is invisible on the outside.
So, let's break it down. /1
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As someone who grew up poor (and who struggled for years to make ends meet financially as an adult), I am now understanding why we always had so much stuff in our house and why it was basically impossible to keep it clean/organized.
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Ok, so I can actually explain why this happens... ready?
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My autism vs my executive dysfunction...
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When you do this, you're in the mindset of "I'll take whatever I can get" even if that's 6 pairs of used shoes in the same size when you really only need 2. Because YOU NEVER KNOW if one or both of the pairs will become unusable. So, best to have as many backups as possible.
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So, your house becomes a crammed and cluttered mess of things. All for the sake of basic survival. It's not that you're a messy person by nature, it's that you don't have the privilege of buying EXACTLY what you need when you need it.
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When you have no money, you find all sorts of ways just to survive. This includes shopping at places like the Good Will and basically accepting any handouts you can get.
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Autistic meltdowns aren't what most people think.
Can it look like a person kicking, screaming, and thrashing around because something happened that was upsetting or unexpected?
Yes, absolutely... \1
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I'm sharing this for those of you struggling with this right now because... I see you. Please don't internalize guilt or shame. Keep doing your best to survive because that's really all that matters. The judgment of others doesn't put food on the table or clothes on your back. ❤️
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And this goes for basically everything you need. Toothbrushes, clothes, winter coats/hats/gloves, backpacks, socks/underwear... you also never throw things out, even when you are fortunate enough to get a new version of something. Just. In. Case.
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Friendly reminder... hidden disabilities are still disabilities.
A person can look "perfectly fine" and still be disabled by their brain wiring.
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ADHD and other auditory processing challenged brains will have a delayed ability to process auditory inputs.
But the brain has a pretty nifty feature that stores up to 2 seconds of auditory information... it's called the "phonological loop"...
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It's Autism Awareness Month, so over the next 30 days I'll be sharing lots of content to educate, spread awareness, and debunk some misperceptions about autism.
In this post, I'll attempt to explain why "everyone is a little bit autistic" is not accurate.
Here goes...
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The language used here won't be for everyone, but I think the message should be.
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"Tell me about yourself"...
Why autistic people have difficulty answering open-ended questions about themselves.
Let's break this one down... \1
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So, when a brain that struggles to process auditory info takes that info in... even though there's a delay in processing *what that info means*... it stays accessible for a short time to be processed when the brain is ready.
Cool, no? 💡
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So, I really like this post because it describes sensory overload in a nutshell.
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Many autistic people struggle with "tell me about yourself."
If this meme resonates with you, stick around. In my next Tweet thread, I'm going to break it all down and explain why it happens. 😊
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FYI... Autistic people tend to think in complexities.
Someone can ask us to do something seemingly straightforward, but our brains will often make it into something extremely complex and nuanced.
We ask questions to untangle our thoughts.
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Did you know there's a type of anxiety specific to autism that isn't explained by any of the anxiety disorders currently included the DSM?
Researchers are referring to this type of anxiety as "Distinct anxiety" because it's distinct to autism and tied to autistic traits.
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Autistic meltdowns aren't what most people think.
Can it look like a person kicking, screaming, and thrashing around because something happened that was upsetting or unexpected?
Yes, absolutely...
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My "high functioning autism" is basically everyone else seeing me as completely normal but maybe just a bit picky/particular... while internally, it's me in constant sensory overload, social overload, and fighting against my executive dysfunction to just do stuff...
Anyone else?
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Undiagnosed autism is spending your whole life doing things that make you uncomfortable or that are just not "you" (conforming) to avoid being mistreated (bullied) until you're so good at it that when you finally do get diagnosed, people around you don't believe you.
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My "high functioning autism" is basically everyone else seeing me as "completely normal but maybe just a bit picky/particular"... while internally it's me in constant sensory overload, social overload, and fighting against my executive dysfunction to just do stuff
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Them: You don't look autistic
Me: You don't see it because my autism mostly affects me. I've spent most of my life minimizing the impact it has on others (for them, not for me)... and now you don't see it, but I feel it twice as much
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I don't know who needs to see this, but stomach issues are EXTREMELY common in autistic people.
As in, some studies indicate that up to 91% of autistic people have stomach issues (like constipation, diarrhea, and abdominal pain).
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Rejection sensitivity at its finest 😅🤣
If this resonates, look it up. Trust me. It'll be worth it. 💞
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Undiagnosed autism is spending your whole life doing things that make you uncomfortable or that are just not "you" (conforming) to avoid being mistreated (bullied) until you're so good at it that when you finally do get diagnosed, people around you don't believe you.
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If you're physically uncomfortable most of the time because sounds are too loud, lights are too bright, everything that touches you makes you cringe, smells are overwhelming, and you struggle to find foods you can eat, but when you do, that's ALL you eat... you *might* have SPD
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I was today years old when I discovered my indecisiveness is related to my autism 🤯 Why is this not talked about more?
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If you're autistic and experience any of the following...
- Temperature regulation issues
- Food & water intake issues
- Difficulty mediating your emotional responses
- A higher or lower than average sex drive
- Sleep issues
I have an explanation that might offer some insight..
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I think autistic people are often mistaken for being argumentative or "needing to be right" when, in reality, it's more about FEELING right and needing the other person to understand why.
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Undiagnosed autism is spending your whole life doing things that make you uncomfortable or that are just not "you" (conforming) to avoid being mistreated (bullied) until you're so good at it that when you finally do get diagnosed, people around you don't believe you.
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This is heartbreaking for so many reasons. (Parents, this thread is especially for you.)
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Why are there so many undiagnosed adults who are only now discovering that they are autistic, adhd, or neurodivergent in some way?
Let's break it down... \1
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Undiagnosed autism is spending your whole life doing things that make you uncomfortable or that are just not "you" (conforming) to avoid being mistreated (bullied) until you're so good at it that when you finally do get diagnosed, people around you don't believe you.
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Did you know that autistic people are more likely to have temperature regulation issues? This seems random (at first) but...
Research shows a noticeable size difference in the hypothalamus b/w neurotypical and autistic children... and the hypothalamus regulates body temperature.
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But much more often than not, an autistic meltdown is not that noticeable, if it's noticeable at all. Mainly because people don't know what they are or what they look like.
So, what is an autistic meltdown, exactly? \2
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For those who don't know (and apparently there are many who don't)...
Autism has 3 levels, according to the DSM.
These levels represent how much support a person needs.
Level 1: Requires support
Level 2: Requires substantial support
Level 3: Requires very substantial support
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Autistic meltdowns aren't what most people think.
Can it look like a person kicking, screaming, and thrashing around because something happened that was upsetting or unexpected?
Yes, absolutely... \1
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Now, it is extremely important to understand that the behavioral response is *the result of extreme and overwhelming distress*...
It is NOT a manipulation tactic, it is NOT attention seeking, and it is NOT within a person's control.\4
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PTSD vs Complex PTSD (cPTSD)
Because I think cPTSD isn't as known as it should be...
PTSD is typically the result of a single traumatic event.
Complex PTSD is the result of long-term trauma (does not have to be years... can be weeks/months)
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My "high functioning autism" is basically everyone else seeing me as "completely normal but maybe just a bit picky/particular"... while internally it's me in constant sensory overload, social overload, and fighting against my executive dysfunction to just do stuff
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The fallacy of "use a calendar to become better organized" is pretty perfectly called out here. \1
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A neurodivergent kid fell into a hole...
Doctor: Keep a journal of your experience in the hole
Local authority: Sorry, we don't have funding for a ladder
Society: What hole?
Me (ND adult): I'm here! I've been there before and figured out how to climb my way out... I can help!
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Well, first of all, it's the result of an autistic person not getting their needs met.
The person will have a fight/flight/freeze response, which will trigger some type of behavioral response. \3
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FYI... if I cut you off and finish your sentence it is NOT my intention to be rude or disrespectful. Subconsciously, my brain genuinely believes that doing this is a sign that I am LISTENING and I UNDERSTAND what you are saying... and it is 100% automatic and unintentional.
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I really love this meme and want to talk about it for a minute.
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Real talk.
Neurodivergent kids are often criticized for not acting as they "should"... considered "annoying" because they communicate differently than what is considered "normal"... and told they need to try harder when they are already trying their absolute hardest. \1
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Did you know that autistic people struggle to process and retain information that doesn't interest them?
Let's talk about it for a few... \1
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This might be the best sensory meme ever 🤣
Ok, so... this meme explained for those interested...
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So, research shows that up to 50% of people with ADHD are also autistic. That means that for every two people with ADHD, it's possible that one is also autistic.
And I feel like this needs to be talked about more...
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My "high functioning autism" is basically everyone else seeing me as "completely normal but maybe just a bit picky/particular"... while internally it's me in constant sensory overload, social overload, and fighting against my executive dysfunction to just do stuff
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Autistic people tend to think in complexities...
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4 things about autism you may not know...
1. Autism is hereditary – Some studies have estimated that up to 90% of the variance in autistic traits is due to genetic factors.
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Level 1 autism in the DSM is defined as requiring support.
This doesn't mean a person can't live independently. This just means that they need external support to get their needs met.
So, let's discuss what this actually means... \1
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Ok, so let's talk about this for a minute.
As of 2023, 1 in 36 children are autistic.
Now tell me, please... where are the 1 in 36 adults who are autistic?
Where is our older generation who is autistic?
“everyone’s autistic now” okay my single 63 year old neighbor with $1.2 million of model trains in his basement who wrote a 90 page letter to the city about the brightness of streetlights when i was growing up was just a regular guy then
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This is why I try to spread education/awareness about Sensory Processing Disorder as much as possible...
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Once, I had a meltdown after getting my hair styled. I could barely make it home without breaking down and crying. To this day, I don't know what caused this meltdown. All I remember is NEEDING to get home and wash my hair to undo the styling. \6
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PSA
Eye contact is a learned behavior.
It is possible to give eye contact and be autistic.
If a practitioner discounts autism based on this one piece of information alone, it's a major red flag.
Let me explain... \1
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What people think autism is:
- What it looks like in movies
What autism actually is:
- Sensory over/under sensitivities, including extreme sensory anxiety when overstimulated
- Social and communication differences \1
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October is also ADHD awareness month. So, let's talk about it...
I'm going to start with ADD, since I think a lot of people still think ADD is a diagnosis... \1
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Did you know that autistic brains generate, on average, 42% more information at rest? 🤯
This explains SO. MUCH. of the autistic experience...
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I know this all sounds very vague and overly conceptual, so I'll give a couple of examples from my own life.
Both examples are from when I was in my early 20s (I'm 39 now). \5
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Them: Autism is way overdiagnosed today. Also, lots of people are saying they're autistic because it's "in."
Me: No. People are finally discovering their very real MISSED diagnoses from childhood because better information about autism is being shared in accessible ways. \1
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My autism was mislabeled as...
Friendly but weird... desperate to fit in... annoying... self-centered... too much... not enough... introverted... finicky... overly sensitive... talks too much... smart but... capable but... [insert positive attribute here] but.......
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PSA: If you can't *choose* to do it, it's not laziness.
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Them: You don't look autistic
Me: My autism doesn't really look like anything. It's mainly just me being anxious about things. Can't eat safe food. Anxious. Someone too close to me. Anxious. Have to do small talk. Anxious.
Them: You don't look anxious
Me: I hide it REALLY well
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Another time, I had a meltdown after getting my nails done. This time, I had a full-blown panic attack on the way home. I remember desperately clawing off the nail polish while on the subway. I knew I probably looked out of my mind, but I didn't/couldn't care. \7
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Them: Lots of people are being misdiagnosed with autism because it's "in" to be autistic, apparently.
Me: No. People are finally discovering their very real MISSED diagnoses from childhood because better information about autism is being shared in accessible ways.
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In both of these examples, I had an extreme emotional reaction to something that led me to behave in ways that probably looked extremely odd, even a bit "crazy" to those around me. But, internally, I was in utter distress and couldn't behave any differently. \8
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Did you know that autistic people struggle to process and retain information that doesn't interest them?
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I also see lots of confusion around how autistic meltdowns can look in adults vs in children... so, hopefully, this helps clear things up a bit.
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I love the details referenced under the water...
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Have you heard of alexithymia? It's a condition that makes it hard for a person to identify and describe their own emotions.
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Why are there so many undiagnosed adults who are only now discovering that they are autistic, adhd, or neurodivergent in some way?
Let's break it down... \1
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Autism and friendships...
So, one of the DSM criteria for autism is having difficulty forming and maintaining friendships. I feel like what's listed in the DSM doesn't do much to explain what's actually going on. So this thread is my attempt at elaborating a bit...
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Normalize apologizing to children.
It teaches them that while mistakes are okay, they sometimes hurt others... and apologizing shows the other person that their pain matters too... that you care... even if what you did was unintentional.
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Reason 1. About half of autistic people have alexithymia... which is the inability to verbally express emotions or feelings.
So, "How was your day" can be extremely difficult for an autistic person to answer because they might not actually KNOW how they felt about it. \2
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To be clear, auditory processing disorder is not a characteristic of ADHD... however it is a very common co-occuring condition with ADHD.
This article explains that up to 50% of people with ADHD also have auditory processing disorder.
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Nowadays, I have mini meltdowns all the time (ones that I have learned to keep to myself, for the most part), but if I ever have a meltdown that *is* visible to others... the people around me usually don't understand what I'm experiencing... or why. \9
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In honor of Autism Awareness Month, to all my fellow autistics...
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Why I think so many autistic people are accused of being manipulative.
Autistic person has a perception that differs from the other person's. Other person accuses autistic person of something due to their perceived reality. \1
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Them: You don't look autistic
Me: You don't see it because my autism mostly effects me. I've spent most of my life minimizing the impact it has on others (for them, not for me)... and now you don't see it, but I feel it twice as much
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Did you know that experiencing a debilitating sense of anxiety when criticized/rejected is called Rejection Sensitive Dysphoria (RSD) also known as rejection sensitivity?
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5 common autistic experiences that might surprise you...
1. Sleep issues, including sleep apnea and insomnia. According to research, up to 80% of autistic people have sleep disorders.
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More on ADHD and boredom. A quote that I think explains it so well...
"Adults with ADHD are always looking for things that are new or stimulating because when they are interested in something, the executive functions of the brain click into gear and the brain works well."
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PSA
Eye contact is a learned behavior.
It is possible to give eye contact and be autistic.
If a practitioner discounts autism based on this one piece of information alone, it's a major red flag.
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Did you know that there's a type of anxiety specific to autism... that does not align with any of the existing anxiety disorders outlined in the DSM? It's called "Distinct anxiety" and is directly tied to autistic traits.
Let me know if you're interested in more info on this...
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Real talk... my autism impedes my life in ways I can't ignore most of the time. It makes life super difficult for me. But there are some pretty nifty things it does to my brain that I don't always spend time celebrating.
So... Autism, the positives. At least through my eyes. \1
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