What is it like to be Autistic?

Let's talk about some of the small daily things that try to explain what it is like to be Autistic.

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I am NOT a medical professional and this channel is not a diagnostic tool. This is a personal vlog coming from a lived experience point of view.

#autism
#actuallyautistic
#autisticvoices

[MDBlaylockAuthor]

Oh Amanda, I didn't realize how much I would relate to this. I'm dipping my toes into self-diagnosis for autism and your video was so very validating.

I can hear EVERYTHING. I had to start wearing my earplugs to church bc it was so overwhelming to hear 50 conversations going on around me and people coughing during the sermon and kids shuffling around behind me.

And oh... The being picked last. That's been my life experience. I've always been the uncoordinated, weird, awkward, loud, girl that everybody just kinda puts up with.
As I've gotten older, I've managed to find some close-ish friends, but more and more people are telling me I'm closed off and hard to get to know... I really think it comes down to I just don't want to be misunderstood in what I say, so I don't say anything or I just agree with everything being said.
All that to say, I'm so glad I found you on Threads which lead me to your videos ❤️ thank you for being open about your autistic experience.

[shapeofsoup]

You are doing a downright brilliant job of representing us. Seriously. You are so positively authentically autistic in your videos. And I know that portrayal is sincere because you just can’t fake that. We see you. We feel what you feel. We experience what you experience. We’re autistic too.

[danwoodman]

Autism for me is knowing that I can never, ever, EVER feel truly safe.

[donnaborg]

Another complex topic you handled with clarity, thank you. I especially appreciate your description of sensations being tolerated one day, then the next day (or later the same day) it's too much.

[prarthanarajan]

I identify with many of your experiences that you shares in this video. Thanks for sharing. I feel less alone.

[lionunderthestars]

So much of this felt very familiar, especially the tunnel vision and not knowing who your friends were parts. I didn't realize you had a friends and family playlist. Thank you for that and another great video.

[tamsynsimmonds]

I identified with so much of this video it could almost be as if you were talking about me! Thank you so much for the content you provide, it helps me (and I'm sure many others) to understand myself and not feel so alone, you put in to words what I'm experiencing but cannot quite put in to words myself.

[Marty]

As a late diagnosed autistic woman with suspected adhd on top of everything, to me being autistic means that I don’t know how to get a conversation going. Reciprocity in the moment is a major struggle and requires enormous vigilance and mental effort and even if I find the right thing to ask or say, I think it doesn’t appear natural. I take a mental note of how other people interact with me and what words they use and then repeat them with someone else and have a mental list of phrases to use or topics to talk about.

I want to connect and have friends but the (social skill) tools are in a very messy (mental) drawer and it takes time and energy to find the right one that is appropriate in the moment. It also means that I can never fully let go and be real me because real me is seen as rude and mean but I don’t mean what I say to be mean. I can’t have conversations and be doing something else that requires even just a little bit of concentration as well, even when prepping in the kitchen I have to stop whatever I’m slicing or grating and focus on what my partner is saying or I will either hurt myself or make a mistake or not fully comprehend my partner.

I’m matter of fact and analytical.

I adore dogs but I also have a major noise sensitivity so if a dog is barking, the noise is overwhelming to me.

I want to have friends but prefer to do things alone or with my partner at most. I enjoy structured interactions, like going to the zoo, playing minigolf, or board games, I don’t like group outings to noisy bars or cafes or even busy markets. Filtering background noise as you said takes massive amounts of effort and sometimes it’s not possible. When people are talking around the table, it’s impossible to keep track of the conversations because it just sounds like a word chaos to me.

It means that even when I had friends, I always felt like I was on the outside of the group. It means that I didn’t realise I was being bullied or made fun off even as an adult and I’m an easy target to be taken advantage off because I always assume a person to have good intentions. It means that I can’t tell if people like me or not.

It means that I experience joy very deeply and jump from excitement when my partner comes home from work (he works away for a few weeks at a time). It means that I do happy dances to celebrate an achievement, even just hitting a pb at the gym. It means that I blurt out things at a higher volume when I’m excited. But it also means that I feel negative emotions more deeply too.

It means that I can only use two specific body lotions that I know won’t aggravate my sensory sensitivity and that I sleep with a pillow between my legs because I can’t tolerate the feeling of skin to skin contact when going to sleep when wearing shorts in summer. It means that I cannot wear most sunscreen because of the sensory overwhelm associated with it. When I do wear it, I absolutely must have a shower in the evening or I wouldn’t be able to sleep because of the sensation on my skin and duvet on top.

It means that I prefer slip on shoes because I don’t have to take the effort to sit down to either tie my shoelaces or fasten straps and then take effort to stand up again. If I am wearing sneakers, it means that I need my shoelaces tied with the same amount of tension so the shoes feel the same on both of my feet.

It means that I have a trouble falling asleep because of sounds in my environment but also can’t wear most earplugs because of the pain they cause. I only recently found one brand that I can tolerate for more then 1 hour.

It means that I look at people’s mouths when they’re speaking and it takes enormous effort to concentrate on what they’re saying if they have something stuck in their teeth.

It means that I can’t have groceries delivered because the fresh produce must have specific characteristics for me to buy it and I’m loyal to certain products because of their superior taste. Covid food shortages caused a major struggle because I couldn’t buy my specific yoghurt for example and because of my black and white thinking, every other brand wasn’t good enough, it was bad. It means that I have a favourite row in the store carpark and if I have to park elsewhere I get very annoyed and need to breathe to calm down.

When I drive my car I must know where I’m going and I look up places on google maps and street view and I also look for parking in the area. If my chosen parking is full and I don’t know the area, I panic easily. I schedule my appointments around traffic. And I hate driving after dark because of street lights and headlights. If it’s also raining, I get overwhelmed really quickly because the light reflects from the road as well as every rain drop on the windscreen and the sound and movement of the wipers is draining the window of tolerance faster too.

When going to a new doctor, I google what they look like so I know what to expect. Because of my preference for sameness, when my gp got sick, I didn’t go to another doctor with my issues, I waited for my doctor to return.

My detail oriented mind means that we struggled to buy a house for five years and when we get stuff done, I’m never 100% happy because I notice every minor flaw.

It means that I leave crazy long comments on youtube.

It’s what it means to be me, it affects every aspect of my life and I’m learning to accept myself and accommodate my needs at the age of 36, at last ❤

[tracirex]

this subject would make a great documentary. your last segment about the friends was riveting.

[Paisley...]

Thank you again for putting so many of my experiences into words and all the precious content you create.❤

[claudiaochayon]

Glad I'm not the only one who can hear electricity. Thought I was crazy.

[MarkWilliamNorth]

You increase my understanding. Loves to you. Thank you.

[tomasvoldrich]

One thing I really do not like about autism is when I not knowing shout at somebody but my brain perceives my voice volume as normal talk volume....Thank you for educational and relatable video 👍

[chibinyra]

AuDHD
Constantly dealing with Sensory Disorder
Pre-DX - constantly fighting the expectations of Neurotypicals but only hurting myself, more.
Always finding both new and lost ways to regulate

[lilirose]

The dynamic nature of autism symptoms is probably the most problematic part for me personally. I've mentioned before that I'm denied all forms of help because "you did fine without it before"- even though I was objectively not fine!- but my symptoms are getting worse with age and repeated burnout, and the people in charge of deciding who gets help just won't accept that as being real- they're very stuck on "autism is a disorder of childhood" like we're all magically cured when we turn 18.

I also hear electricity, plus my special interest is aquariums so I have a huge air pump in my living room, so I basically live in noise cancelling headphones. I sleep in a pure silk hair bonnet because I also hate hair on my neck while sleeping but can't endure a bonnet that is made of satin or any other synthetic.

[RichardHallam-pr]

I must say, I think you're lovely, a gorgeous lady, you're a strong and very brave lady. x x x

[Minakie]

It's almost uncanny how similar your sensory sensitivities are to mine. Everything from having to wear shorts beneath dresses, to needing to always have a bra, to sleeping with socks, to constantly having to wash your wands while you cook, to hearing the electricity (this one got me to smile because I was literally commenting that with a friend like 5-10 minutes before I watched the video) is just so spot on.

[edie]

I was drawn to this video because you seemed so familiar from the thumbnail. My oldest daughter is going to be forty this year, and we are just now getting toward the right diagnosis. My kids were called Bipolar, learning disordered, behaviorally challenged, etc., everything but autistic. The medications were a nightmare. I relate to so many of your sensory things, myself. So I did not find them that unusual in my children, but frustrating. You also sound like my son who is labeled as OCD. Wow. Thank you so very much for sharing.

[amyw]

I really appreciate your content. I’ve always had sensory (and social) issues but never until recently even considered autism as a possibility. Anyone else freak out if water runs down their forearm while washing dishes? My mom told me a few years back that my dad and I both don’t realize when we’re too warm and get really cranky before going into a “gotta get out of this sweater right this second” panic.

[Catlily]

The variability is very confusing to people. "This noise didn't bother you yesterday why is it bothering you today?" And it is hard to explain why.