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!!!
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.