What does having autism entail?
Good question right at the start. I am sure we all know the “textbook autistic” person but in reality autism has thousands of faces. Generally spoken our issues are of clear neurological nature and involves varying tendencies of social skill disabilities, motoric disabilities, hypersensitivity, being rigid in thinking and hyperfixating on things.
Do you prefer being referred to as a person with autism or an autistic person?
Autistic person. I won’t make a fuss if you call me otherwise but logically speaking autistic person makes more sense. It’s too interwoven in every aspect of me to seperate it from who I am.
Do you consider yourself disabled?
I call myself “affected”. I am not hindered from doing what I want but I need to approach things differently and use other strategies than neurotypical people. So yes, things are often more difficult for me but not impossible.
Do you have other related conditions?
ADHD and possibly CPTSD (still seeking for an official diagnosis on the last one)
On a scale of 1 to 10, how much impact does autism have on your life?
8 – its hard to seperate it from ADHD tho and my possible CPTSD is a direct cause of autism (my autism caused friction with the wrong people and to me it was just a confusing mess bc i didnt understand) so…. yea this ball of issues has a quite severe impact on me. It is possibly a lifelong task of mine to learn how to handle it and heal what is able to heal.
How does autism affect your day-to-day life?
When I wke up I have a rough daily schedule mapped out in my head. It is not super rigid I’d say but changes take a while to get used to. That means if my mental schedule says “I have free time now for two hours” and you storm in and say “you have free time? omg so we can go out now and do xyz” and I will stare at you blankly because this is not in my schedule.
What you suggest to me is cutting my free time shorter while I’ve been looking forward to draw and chill for these two hours. If I was a computer I’d show a bluescreen now. Error. Let my finish my task. You can avoid this by giving me a timeframe of half an hour or in emergencies 15 minutes. I cant switch tasks within seconds.
It’s different if my schedule says “be flexible” if I already know sudden changes may happen in that time I can adjust quickly and swiftly. It is really all about predictability.
My autism shows up in many other areas too but that would be a huge essay now. Let’s just say its many tiny thing under my everyday mask that I can sometimes cover up, sometimes just own it and laugh about myself to make them socially acceptable. But every time I sigh mentally. “Oh frick another autism moment. How do I explain again what is not understable to others?”
When were you diagnosed with autism?
In my early teens.
Did being diagnosed with autism help you understand yourself more? How did your diagnosis help?
Tremendously. It played a key role in understanding my trauma and therefore in healing. Meeting others like me also helped me understand why other people often dodged me or brutally rejected me after they’ve gotten too close to me. It also helped me understand why my parents struggled with me so much. It is not my fault and sure some people could have reacted less violent. But… it is understandable.
What are your thoughts on the term “special”. Do you consider it offensive?
Not offensive in itself. There are many things that are different in how I must approach life. However the word “special” implies an overly positive tone which… feels weird. I am a person. I am not better or worse than you are. I just don’t function like you do but my worth as human is the same as yours.
What are your thoughts on the r-word (retard)?
Insults are generally not a nice thing, no matter the word. I twitch stronger when someone uses “autism” as an insult. It reinforces the stereotypes and the stereotypes are a huge reason why I don’t get help when I need it.
I had a phase tho where I used the “autism-slur” online tho just to reclaim it and make derogatory jokes about myself. Like calling my hyperfixations “autistic” aka obsessive. It’s not even a lie.
Do you go through life proud of your autism or do you keep it more of a secret?
What good would come out of it if I told people? I would only be regarded as a liar, attention seeker or worth less than others. I prefer to not draw such attention onto me, thanks. What’s to be proud of it anyway? It’s not an accomplishment, its just an oopsie of nature that has its unique survival strategies.
Why should I be proud of something I have no control over? I think “Pride” is more meant as “acceptance”. I am autistic, this is a fact, noone but me cares because noone but me lives my life. To me, it is as simple as that.
Do you get sensory overload? What does it feel like?
I don’t struggle a lot with it but I show tendencies of being more sensitive to sensory sensations. (hehe three sens- in a row).
However after the Corona lockdown as I was already used to empty streets and people started to leave their houses again i felt like as if I was hunted by noise and people and lights and aaaaaa. I felt hunted by Too Much Of Everything.
Other than that I luckily don’t seem to be MUCH more sensitive than other people, just a little, enough to annoy others/be noticed.
Do you ever feel like people underestimate what you’re capable of because you’re on the spectrum?
Since I don’t tell anyone I have no issues with that. But see why I don’t tell anyone?
How do you think people who don’t have autism should interact with people who are on the spectrum?
Be polite. You don’t have to get along with everyone and if my autism clashes with who you are you are free to take your polite distance. Just be respectful and polite that is all I ask for. Also… i would love for people to not be annoyed so quickly but I fear that’s like asking someone to not get angry after you’ve insulted their family so…. if you get annoyed then please be aware I don’t try to annoy you on purpose.
I hate myself a lot when I accidentally annoy people. Most things I do are done in good faith. Please ask me for my reasoning before jumping to conclusions. Even if you don’t understand my actions (sometimes when I try to explain my actions I notice I had an Autism Moment (TM) again that defies any common sense) please know I try my best to get along with you somehow. I don’t want drama or fights. I just want my peace.
My condition keeps stirring up trouble tho just by being socially clumsy or forgetful and I hate it. If you can’t deal with me politely keep me at an arms length or leave.
What are your thoughts regarding the idea that some people have that autism is caused by vaccination?
My first vaccine I’ve gotten in my life was 2021 because I’ve chosen to get the covid vaccine. So yea I am the living example of autism that is definitely not caused by vaccines. – Just for the record: we are no antivaxxers tho but we are careful people. The frontiers regarding that topic are so heated though.
Do you have trouble making friends?
I am a friendship nomad. I meet people, build superficial friendships and leave again. Rinse repeat. I do feel lonely though but I don’t want to go around and repel people by showing too much of my weirdness. And I have so much weirdness going on, its easy to discover glimpses of it even in superficial friendships.
Doesn’t mean the people mean nothing to me but I just… feel safer like that.
Do you feel connected to other people on the spectrum?
Depends. Every autistic person is different. Neurotypicals don’t all get along automatically either. But it is nice to know I am not alone.
What are your special interests?
this could reveal my identity because I am known for my special interests and my contribution to them. Let’s just say yes they are a huge thing here.
Have you ever been bullied? Did that take a toll on you? How did/do you deal with it?
Yes. I don’t wish to go into detail. Just know that I am finally trying to seek therapy for the damage I cannot undo by myself.
Have you lost opportunities due to having autism?
I wish I would have had a normal social life. I feel so naive ontop now because I miss the experiences many other people had. But oh well. I am not one to grieve over missed things too much.
How did/does autism affect your education?
The mix of all my issues made me repeat three years. Yes I went to school for even longer than legally allowed. It felt like this darned institution had me in its grasp and didn’t want to let go of me. And I was stubborn to get my A levels. If I suffer so much for so long then at least I won’t leave without a victory.
How does autism affect your career?
I went into an extroverted job just for the sake of it. Turns out I love it. And I realized I am surrounded by people who are more inrovert than I’ve thought. I think since all our many social interactions have a clear script it’s easier to handle. But I do admit that it still involves exhaustion and jumping over my own shadow. The feeling of overcoming my issues/anxieties and doing better than expected is like a drug though.
It is my form of revenge on everyone who predicted a bleak future to me.
How does autism affect your love life?
I had zero love life until I met someone online. This person is like me. Sadly, my/our issues take a toll on the relationship sometimes, occasionally turning it into an emotional clusterfuck. But we are stubborn autists and because we often act to a similar (autistic) logic we can empathize and explain well. It is one reason why I seek therapy now.
How do you feel about autism jokes and people throwing around the word?
see above
What did your parents do right and wrong, in raising an autistic child?
Right, wrong… I don’t dare making such judgement. They tried their best. Naturally things go bad when they try to explain you from a neurotypical view. Like for example since I am more sensitive my reactions can look more dramatic and manipulative. From my perspective though I am emotionally overwhelmed and ask for help that gets denied to me. But since I am seeing others like me as well I understand my parents reaction because I get overwhelmed when other autistics are super emotional and dramatic. It sent the wrong message to me as kid tho.
Over the years my parents learned and improved. Damage is already done but they owe it, have profoundly apologized and understand me better now.
What are misconceptions about autism?
The stereotypes and that all autistis are like that. Autists who are invisible but still suffer from their autism? Yes must be fakers who spent too much time on TikTok /s
What do you find is the biggest challenge of living with autism?
To pretend not being autistic. And if you play with open cards then the price is a stigma. It is really a special survival strategy that is needed.
What are things you like about having autism?
When I am hooked onto something I am HOOKED onto something. If I really want something, from deep within my soul, then I also get it because I am like a bloodhound who does not let go until the bitter end.
Downside is that sometimes I know I need something and I want it to avoid trouble but… I don’t really really want it from deep within my soul. And then it is almost impossible to get it because of that. My brain is a diva and it only works when the prize is big enough. But when it does then beware.
What are things to NOT say or do to autistic people?
Must be a misdignosis”. Or infantilizing me. Or just being respectless/rude in any way. For heavens sake just treat me like you’d treat any other neurotypical too. If I need a special adjustment I will tell you. Again: I am exactly as much worth as you are. And I am not helpless. Don’t make a fuss over me, please.
How do you feel about how autism is portrayed in media? What are some of your favorite pieces of media with authentic representation?
It’s sweet but often too much stereotype-y. I like the She-Ra reboot. Entrapta (the autistic character) might still be very stereotype-y but shes adorable and it’s not all about her autism she is treated like a normal person.
Who are your favorite autistic celebrities or characters?
Well I guess that’s Entrapta then.
What would you like to say to autistic people?
Live as you wish is best for you. Don’t compare yourself to other autistics. We too are diverse just like neurotypicals. Focus on what makes you happy because only things that make you happy are things you will excel in. That goes for NTs too but I feel it’s even more extreme with us autistic folks.
What would you like to say to parents of autistic people?
Talk to your kid. Try to understand it. Try to adapt. But also don’t coddle it. Autism is not an excuse for shitty behaviour even when done by autism logic. At the end if we want to break the social rules to adapt them to our autistic needs we need to LEARN them first. Not understanding social rules at all because you never taught them just makes life harder.
Also be prepared that a lot of “obvious” things need to be learned manually by the child. I had to re-learn how to walk like others, have a speech like others and even how to grab a water bottle without sending off “I am greedy” signals. (I feel thirst stronger than others so I tend to be impatient with drinking).
And a tip from my parents: Patience is key.
What do you think society could be doing to better serve autistic people?
A nice start would be to drop the damn stigma and prejudice around the label.
What would you like people to know about autism?
It comes in thousand faces and yes some of us live in places you’d never expect an autistic to live in.
What are your thoughts on Autism Speaks?
Their mission is weird as heck.
Tell your story, opinions, experiences.
Once again: Autism has thousand faces. I am only one of them. What I say is what I say and does not neccessarily reflect other autists. Others might have completely different opinions and experiences. Listen to us as individuals just like you would with your NT friends as well.
I cannot speak about autistics who can’t mask but… just be respectful to everyone please.