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.

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!!!

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. 

First, to get the "rubber stamp" of Autistic on paper, I had to have a history with all of the three items below: 

FIRST: Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

This one was easy, thanks to the baby videos, where in MULTIPLE situations at different ages (starting when I was an infant), I was playing on my own with an item or toy. 

In 3 separate videos, the adults desperately tried to get my attention, but I was too hyper-focused on the thing in my hand to hear or respond to their attempts to engage with me. I also didn't respond when my name was called in the videos or try to share my items with the adults (apparently, many kids respond to their name by a certain age, and some kids share toys with people they care about and try to get others to engage with them, but I was "in my own little world" and always thrilled to play alone). 

As an adult, many of these things continue (though they are less noticeable to outsiders). 

Even today, one of my biggest struggles is taking turns in conversation. I don't know how to speak the "appropriate amount" and struggle with either holding it all in, not saying anything (despite wanting to), or the other extreme of info-dumping and dominating the conversations (unintentionally).

People think I'm rude (or uninterested) because I struggle so much with timing in conversations (especially if there are multiple people in a group dialogue). 

The spaces between words and sentences can feel so long (and my working memory so bad) that I become compelled to interject into the silence (partially so I don't forget my point before it's too late) only to find I didn't wait long enough, interrupting someone mid-thought. 

Other times the space between words can feel so short I can't find time to share (and by the time the conversation opens, my thought is no longer relevant). Sometimes I won't know what I want to say until much later when everyone else has moved on and will be upset if I take the conversation backward (so I keep my thoughts to myself).

The bigger the group, the more I struggle to keep up, but even one-to-one conversations can be a challenge, where I either talk too much or share too much, or know what I want to say but never say it because I don't know how to word things in a way the receiver will understand. 

Speaking on the fly, without preparation (or about my feelings if I haven't processed them yet), can be difficult, depending on the topic. Despite this, typing allows me a language fluency I can't access with unrehearsed spoken words. 

Knowing this about myself has taught me that the best way to communicate my thoughts is through scripting (and sometimes rehearsing). I craft precise points in text, read them back, or pass along a note for someone else to read. 

For presentations at work, where I deliver organizational training on NeuroDiversity and LGBTQIA+ Inclusion, I write complex scripts and then rehearse them so the words flow out of my mouth as smoothly as the text rolls out of my fingertips. 

In meetings, I come prepared with bullet points I need to state or ask and take lots of notes so I don't forget to say anything or miss anything important.

When I didn't understand my brain, I didn't do this. I would struggle to keep up in meetings, forget to ask important questions, and when after the meeting ended, would struggle to remember important meeting information.

Before, I was impressed by people who could "wing it" and didn't need as much prep time for calls and meetings. However, since giving in to my needs, I can now appreciate how my preparation and pre-work make me better and more organized than people with a less structured approach. 

Understanding what this part of the criteria means to me helps me explain what I need from people around me (whether I tell them I am Autistic or not). 

I don't always tell everyone everything I've shared today. That's a whole lot of personal information to disclose. 

What I share always depends on the type of person I'm speaking to, what I need, and if I feel sharing with them will be helpful to me or not. I also consider how safe I feel around them and the context.

Generally, most people don't understand what Autism is or will have narrow preconceived stereotypical ideas about Autistic People. 

Often, if I am unsure if a person is safe, think they may be unsafe, or I don't have the energy to lecture about "What Autism Is," I won't even share that I'm Autistic with people. 

So for the last two categories of people (a person we do not know is safe, and a person we know is unsafe), I would not even share that I'm Autistic and would only explain to them what I need and how getting what I need helps me do whatever task I'm hoping to accomplish. 

For example, that would be letting people know that email and text are my preferred method of communication because that helps me to be sure I'm not missing essential details (because I have everything in front of me in writing) OR (because I need time to process things), letting people know when I will get back to them with something in the future, allowing myself the time to process and think through things. 

I also may tell someone I made a few notes before the meeting to ensure we covered everything or that taking notes in a meeting helps me remember crucial details so I can hold myself accountable for my promises in the future. 

I don't have to tell them I have crappy working memory and forget shit all the time because if empowered and allowed to do things my way, I can do just fine (without airing so many of my weaknesses, making me vulnerable in potentially unsafe situations). 

How and what I share with people who may or may not be safe is very different from what I share when I speak to safe people. 

If I'm speaking to someone I know is a safe person asking for safe reasons (i.e., education, general understanding, without judgment, etc.), I can share a lot more and in more detail. 

To those trusted, safe people, I would say: 

"Autism is defined by social communication differences and a tendency towards what is often referred to by medical professionals as, "restricted repetitive behaviors" or, as I prefer, "a strong desire for order and routine in a chaotic world. I am not restricted. I am specific and specialized, which can be just as much a skill as a weakness.

Many Autistic People are diagnosed in early childhood; however, many Autistics go unrecognized until adulthood, especially if we are good at hiding our struggles." 

Then I would check in to see if the person is following me or not before moving forward.

Autistic People also have diagnosable communication differences (the SECOND requirement for receiving an Autism diagnosis according to the DSM-V). 

Autistic people have verbal and non-verbal communication differences. 

For example, we may have different speech patterns and abilities to access spoken language at various times (or at all). We may speak less than our peers or talk excessively (when compared to our peers). We may also struggle to pick up on unspoken things or, as listed in the diagnostic criteria, we may have: 

Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

Differences in facial expressions - (we may appear overly or under-expressive to non-autistic onlookers) and may have difficulty recognizing and decoding the facial expressions of others. 

This struggle was evident in my childhood videos, where I would attempt to use gestures I had seen people around me incorrectly and how I would miss things, people thought had been implied. 

As a kid, because I had a "special interest" in dogs and animals, I learned to read animal body language and facial expressions but never thought to study what human facial expressions and body language meant (before I found out I was Autistic, and how much this knowledge could help me in life). 

I started learning to read human body language and facial expressions in my 30s, after learning I was Autistic at 29 and realizing I didn't pick up on this naturally growing up. Other people's body language is like a second language (one I'm still learning) to me.

I'm only just now learning to watch and notice when there's a shift happening, and I often still find myself confused about what the specific change means. 

I frequently ask people, "What does that face mean?" because otherwise, I won't know. 

My partner, with whom I spend the most time, helps me decode faces in movies and understands why I ask this.

If with a safe person, I can let them know that being Autistic means I struggle to "read people"- but really I struggle to read non-autistics. 

The THIRD thing Autistic People struggle with, according to the DSM-V, is Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Ironically, two of the three people interviewed about my childhood were people I'd struggled to maintain relationships with and had even lost touch with at various times in our lives (as was noted by both interviewees). 

I'd also struggled so much adjusting my behavior to suit the social demands of my current workplace that my mental health had collapsed from the effort. The constant pressure of assessing and adapting to the environment (instead of just existing and being accepted as my authentic Autistic self) crushed me.

After years of struggling to be accepted and make friends, I lost interest in trying to make them. 

In addition to expressing all three struggles above, Autistic People only need to have at least two of the four types of "restricted, repetitive behaviors" (currently or in our history) listed below. I checked all four boxes. 

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