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What IS Autism? How do you explain being Autistic to people?

I’m creating a new community outside of social media on Substack (where I can have more control over my space), and I hope you’ll join me as a free member (but I also have paid subscriptions if you want access to bonus content). Currently, for PRIDE MONTH all paid annual subscriptions are 50% off (only $25) your first year when you subscribe now through the end of the month.

I’m not sure if it’s the Autism, the ADHD, or both… but I REALLY struggle to learn about things that don’t interest me, which is why I always want to create resources that interest you, my readers.

This week’s question comes from one of my readers on the NeuroDivergent Rebel Facebook page on a post where I asked “If you could ask me one question, what would it be?

Kayden asks:

“What are some ways to safely answer the question “what is autism?” (Or questions asking about our own personal autistic experience)

Asker types:

a person we know is safe and asking for safe reasons (ie: education, general understanding, without judgement etc.)

A person we do not know is safe

A person we know is unsafe”

Thanks so much, Kayden, for this fantastic question! Let’s dive in!!!

image of a question mark made out of multicolored pegs on a yellow backdrop with white text that says 'NEURODIVERGENTREBEL.SUBSTACK.COM What IS Autism? How do you explain being Autistic to people? I urge you to review the criteria, reflect on your life, working out your own explanation about what Autism is to YOU.'

CONTENT WARNING: This piece includes medical language to describe Autistic People

When you first discover you are (or a loved one is) Autistic, you may want to share this information with people (especially if this revelation answers many questions). However, this isn’t always easy to do (especially in the beginning) because Autism isn’t just one thing or one type of experience, and what Autism IS to each person can be as unique as their fingerprints.

No two Autistic People will experience what it’s like to be Autistic in the same way. For example, my partner and I are both Autistic, but our strengths, weaknesses, supports, triggers, and sensory needs differ. We’re both Autistic, but what Autism means to me and what Autism means to my partner (and any other Autistic Person you meet) are NOT the same. 

When looking at Autism, there’s a specific medical criteria that Autistic People meet to be considered Autistic. In the United States, they use the DSM-5 to diagnose Autism, and other manuals are used in other countries.

The criteria give us a starting point. However, it is limited in that it’s focused on children and childhood presentations of white Autistic boys (the first group studied when Autism was discovered). 

The diagnostic criteria also does not take Autistic camouflaging and other coping skills late-identified adult Autistics frequently depend on for survival into consideration (which is why it’s CRUCIAL for anyone looking to get a formal evaluation to seek out a professional who has experience with or specializes in diagnosing Autistic adults). 

The most important thing you can do as a newly discovered Autistic Person (or someone who’s supporting one) is learning NOT what AUTISM is but what being Autistic means to YOU (or your loved one) as an individual Autistic Person. 

Some questions to ask include: 

  • What are your (or your loved one’s) unique strengths and weaknesses as an Autistic person? 
  • What obstacles are holding you (or your loved one) back in life, and are there any supports or accommodations that can be made to help overcome those obstacles? 
  • What’s your sensory profile like? Are there any sensory things you love/need more of struggle with/should avoid? 
  • What’s your communication like? How do you best communicate with others? 

Though it’s not perfect, familiarizing yourself with the medical criteria can be a good starting point in understanding how Autism applies to your unique life circumstances. 

According to the Autistic diagnostic criteria, Autistic children ALL will: “To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of the three areas of social communication and interaction plus at least two of four types of restricted, repetitive behaviors.”

Notice it literally says “a child must” in the diagnostic criteria on the CDC website. However, Autism is a life-long neurodevelopmental difference, meaning Autistic adults exist (because we don’t grow out of our Autism). 

Just because you can’t SEE someone’s struggles (or they appear to be coping with them well) doesn’t mean the struggle is not there. 

The focus on children has left many Autistic adults (whose needs have evolved over the years) struggling to express their own Autistic experiences (especially if they no-longer closely follow the medical expectations of what an Autistic Person should be). 

People who work with Autistic children who cannot camouflage (or haven’t learned to camouflage yet) may see a high-camouflaging Autistic Person and not understand that there are a LOT of unseen circumstances going on beneath the surface with that individual allowing them to emulate non-autistic people around them (or how exhausting the mental gymnastics of trying to blend in can be). 

This focus in the criteria on children and our childhood presentation is why the person who diagnosed me spent most of our interview looking at my childhood, reviewing baby videos, and then speaking for people who knew me as a kid (so they could see how I was before I learned to camouflage and cope in the world).

During the diagnostic appointment, the assessor looked at my history with the following: 

NOTE: I will be including the official medical deficit-based language that only focuses on Autistic struggles below. However, I hope one day, we will have a more inclusive and balanced picture of Autistic people, including our strengths and weaknesses. 

In addition to Substack, this post was shared on Patreon, where I always offer a pay what you can subscription (starting at $1 a month – less when you subscribe annually).

3 thoughts on “What IS Autism? How do you explain being Autistic to people?

  1. What are we ?
    A biologist sees that differently than a shaman.
    They each use different ways to experience.

    Compared to a mountain a hill is small but compared to an atom a hill is huge.

    The Universe exists because of divergence.

    (Backtracking from I what I originally wanted to write. deleting it)
    Meaning I original put some stuff in but changed my mind.

    We are divergent from our selfs.

    Psychiatrists are divergent from their patient.

    Autism is a convenient label

    A label I disagree with.

    It only labels symptoms.

    It labels a wide range of symptoms making it meaning less.

    Giving the perception it is all the same which it is not.

    it is a label people are comfortable with.

    Its like reducing apples, oranges, nuts to just fruits and nothing but fruits

    Reducing the divergence of reality of fruits to just one thing.

    And they include roots as fruits.

    People include tomatoes as vegetable not as fruits but they are fruits.
    People label a specific subset of the whole of what really are fruits as fruits and the rest of them are labeled as vegetables.

    We have the opinion that what we perceive is the whole.
    But our perception is really divergent from the whole.

    Reduced to thinking and to what is left after processing our senses.

    Reduced to be divergent and blind of our self’s.

    After that we are given ego.

    From being away of being real we are made a character in a drama.

    That is what Buddha, Jesus, Mohamed, Taoist masters (the ancient ones) , … find.
    Plato too.

    It is what I find.

    That is what I find makes me.

    That is what I see makes everybody.

    Sane and insane.

    As Monty python sings “it is all a show keep ‘m laughing as you go.”

  2. What is autism ?
    That means different things to different people, different realities.

    Does reality not mean re-align ?

    I can no longer find myself with alignment of perception that scientists find.

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