#explaining autism

Ask date: September 15th

Short answer: You can’t.  The only way to explain to people that you struggle is to explain your struggles, which means to give them personal details.

Before you explain autism to anyone, you need to ask yourself why you are trying to explain your autism to this person, and what is your goal in doing so?

For example, with my coworkers, I do not try to explain every symptom of autism that I have and every struggle in my life.  Instead, I only explain to them symptoms that affect work.

So for work, that means communication struggles and my Auditory Processing Disorder, mostly.  I only explained my communication struggles to my one coworker that I work most closely with, because I ask her to read most of my emails before I send them.  I ask her to help me say things the right way.  I also ask for her help in reading emails that I don’t understand, and she is very kind in helping me when I don’t understand something.

For my APD I have official reasonable accommodations set up, so that I get captions for phone meetings (and they are SUPPOSED to avoid any meetings where captions aren’t possible, but I’m constantly fighting that battle...).

So that’s how I explain my autism to the people at work- I only tell them about the symptoms that affect me at work.  I don’t tell them about my issues with food, or that I have to wear 100% cotton clothes, or that I listen to the same song on repeat all day at work.  They don’t need to know those things, because it doesn’t affect how I do my job.

When I’m trying to explain my autism to my doctor, I explain a different set of symptoms.  I explain to them that I do not feel pain the same way as allistics, and that I need them to not rule out any diagnosis based on my description of pain or how something feels.  Some doctors listen.  Many do not.  I don’t go back to those doctors.  It’s hard work, but I search for doctors who do listen and do believe me when I tell them I feel pain differently, and those are the doctors I keep.  But I do not need to explain to my doctors the difficulties that I have with watching videos, or my reading comprehension struggles, because they don’t need to know that.  That’s only something my coworkers need to know.

When I’m trying to explain my autism to my friends, what I need from them is very different from what I need from my coworkers or doctors.  From my friends I need emotional support, and so I want them to know about and understand the more personal struggles I deal with.  I tell them about my difficulty with emotional regulation so that when I’m crying at work, I can reach out to them for help to get me through the moment.  I tell them about how I was stimming in the doctor’s waiting room like crazy and people were staring at me like I was a freak, so I need them to know what stimming is and why I need to do it, so they can support me.  With my friends, I do tell them the embarrassing and personal details, because I trust them.  

So I’m not sure who it is you’re trying to explain your autism to, but you don’t need to explain the whole thing to every person you interact with.  For acquaintances like coworkers, doctors, study friends, etc, you only need to explain the symptoms that affect the activity you’re doing with them.

The only time I think it’s worth it to try to explain all of my autism to someone is with people who I trust deeply, like my close friends and my therapist.  These are the people I need for support and to lean on in many different kinds of situations, and so they are the ones I want to describe my “full autism” to.  But they are also the ones that I do trust with my most personal struggles.

let’s say we were both having a conversation with the same person. however, one of us got the real life version (vocal tones, gestures, expressions, etc.) and the other got a text message.

having autism, i always get the text message. i have to rely on words alone since facial/body expressions and tones are almost nonexistent to me.

I think the best thing would be to maybe write it down in advance so you can really think through the best way to phrase things. I can’t really give you specific phrasing for most things because it may affect you differently, but for sounds hurting what I used was something like

“Imagine your senses are two or three times more sensitive, like a dog. Things would hurt you or feel bad that other people wouldn’t notice, wouldn’t they. That’s my life”

It worked on my then 15-year-old sister

Hope this helps

I'm autistic and I see it like this:

I'm always observing the symmetry or lack of symmetry in my environment. My brain likes symmetry. Sometimes, I create that symmetry myself...that's stimming.

Meltdowns happen when that sensory symmetry is unexpectedly disturbed, like a sudden change in routine without warning or too much stimuli or multiple "respond now" prompts (like the phone and doorbell ringing) happening simultaneously.

One of my favorite explanations of what it’s like to be autistic is this post that was made on Mod Sam’s blog. ASAN also has a page that explains autism, which you can read here.