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4 Things I Want People to Know About My Autistic Self

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1) My sensory experience is vastly different than your own.

When I complain that the lights are too bright, noises too loud and overwhelming, tastes bitter and unpleasant, touch too ticklish — I’m not exaggerating. I experience the world in a near-constant barrage of sensations. I am very hyper-sensitive to nearly all sensory input.

I grew up with a lot of internalized embarrassment and shame surrounding my over-sensitivity. At the time I wasn’t diagnosed, but I felt different and weird. I was the only kid who covered their ears and cried during fire alarms, always squinted in the sun on the playground, jumped at sudden loud noises, and absolutely refused to eat bitter or spicy foods.

I wish people had understood growing up that I’m not “weird” — just different. My sensory experience is different than yours, but that doesn’t make it wrong or even fully negative. When I am at home and can stim freely, it’s the best feeling in the world. When I get to rock in my chair, listen to or sing the same song repeatedly, touch fuzzy stuffed animals, or get under my weighted blanket, I am happy and content.

What you can do: Believe my sensory needs are valid and important. Let me stim when I need to in the way that I need to (with the exception of self-harming stims). Try to imagine what my world may be like and think of some ways you might adapt things to be more comfortable for me.

2) Meltdowns aren’t tantrums, and I can’t control them.

I have meltdowns over what appear to be “small” things, but those things are really just the last little nudge that tipped me over the edge.

My therapist gave me a great way to look at the buildup to my meltdowns. She explained that I have these “pillars” holding me up: social, mental, physical, emotional and sensory. When these pillars are exhausted and assaulted again and again, they begin to crumble and everything collapses. Often that seemingly “small” thing is what finally sends my pillars toppling, pushing me into crisis mode.

During a meltdown, my body goes into the ultimate fight-or-flight showdown. My mind says, “I can’t do this right now” and shuts down to protect me. My hands go numb and tingly and I often shake them fiercely to try to stop the unpleasant feeling. I cry, wail, rock, shake my head and cover my ears; an involuntary groaning sound sometimes escapes from my throat. There is often a small speck of light deep within my chest saying, “This is silly. Why is this happening? I’m OK. I’ll be OK.” Sometimes my mind is wild and frantic. Sometimes it’s slow and clunky. Sometimes it’s filled with a buzzing emptiness.

After a meltdown, I feel extreme shame. I wonder why I couldn’t control myself. I think about ways I could have avoided it. I feel embarrassed, childish and extremely fragile. I perseverate on the little thing that set me off and feel ridiculous that something like the wrong food order could set me off that extremely. I worry that people will now think I’m incompetent, unintelligent or unbalanced. But what’s really happening is a breakdown from being strong for far too long in a world that exhausts and overwhelms me.

What you can do: Don’t think less of me for melting down; I am still the same person you know and love. Try to remember that the “small” thing that triggered my meltdown isn’t the full story. More than likely, I have been under high social, emotional, physical, mental or sensory stress for a prolonged period of time. I am exhausted. Remember that I will be fragile afterward and I need time to recover.

3) Change can be terrifying and the unknown a source of anxiety.

When I was young, even the smallest change could send me into panic mode. I’m better at adapting to change now, but it still makes me incredibly anxious a lot of the time. I’m constantly trying to adapt to keep up with a fast-paced and noisy world. Things are often overwhelming for me, so my mind is always trying to compensate, ground itself, and anticipate future struggles and hurdles.

When I prepare for something, I have to think out every little detail. When something changes — often even something “small” — I need to take a step back, re-adjust all of the preparing and planning, and get used to the idea that things will be different. Some days, this is a fairly easy (but often stressful) process. Other days, I can’t handle a change and I need time to understand and process it.

The more I know about a situation, the less anxious I tend to be. The less unknowns, the better prepared I am and the more small changes I can handle. For example, I am much less likely to attend an event or go on an outing if there are a lot of unknowns attached to it. It helps me to be able to anticipate, imagine, and mentally “practice” and prepare for a lot of what I may be expected to do. If I know details, I am able to prepare how to function in that space.

I’ve gotten better at some level of spontaneity in my adult life, but it’s not necessarily truly comfortable for me.

What you can do: Try to be understanding and patient. If you invite me to a social event, let me know I can ask any questions I need to without judgment or annoyance. Tell me who else will be there and what you expect to do. If there will be a significant change in the event, like who is coming or what we’ll be doing, try to give me a heads up so I have time to process it and adapt.

If we are traveling together or doing something out of the ordinary routine, let me be a part of the planning process if possible. If not, tell me well in advance what we might be doing. If possible, give me a written itinerary to refer to whenever I need to.

4) I am not a miserable person.

It’s true that I sometimes struggle. The world can feel overwhelming and scary. I’m sometimes very anxious. My sensory input is often off the charts. I struggle with executive dysfunction. Stress drives me to a meltdown sometimes, but I am not a miserable person.

I love the way my brain works. I love that I see patterns in things, feel emotions powerfully, get such joy from music, experience extreme hyper-empathy for others, can focus intensely on my interests, and see the world in a unique way.

With the support of my loved ones, friends, teachers and professors, counselors, therapists and role models, I am becoming a person I am proud of. I am starting to be proud of my autistic self. I am finding the things I am good at and developing them. My “special interest” in Japan became my field of study in college. My intensely-focused interest in writing has led to me blogging and connecting with countless people.

I am not without struggles. There are some things that I will always struggle with. But I am not a miserable person, and I am not sad to be my autistic self.

What you can do: Support your autistic loved ones. Build them up. Don’t forget to look at the positive things about them. Encourage their interests and passions. Assume competence and don’t talk about them like they aren’t there. Try to imagine their world and adapt yours to welcome them. Let them know that you love them unconditionally and that you support them. Support them and build them up. Listen to autistic adults about their experiences. Ask questions. Learn from mistakes. Love them.

Read more at Seeking Sara.

Getty image by Elizaveta Elesina.

Originally published: September 25, 2018
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