Does anybody here feel like they actually understand what it means to be autistic?

I have no idea what it means, I am struggling to understand what it means to me. Perhaps it’s nothing other than understanding myself better but that takes time. The rainbow of the spectrum doesn’t make it easy to define yourself as everyone will have different personalities, varied life experiences and traits of the syndrome. I am not sure if black and white thinking makes it more difficult to comprehend, you may struggle to settle on a comfortable position in life without more clarity. This leads me more and more to think a diagnosis isn’t always enough and help should be available after the assessment. 

dizzydes said:

And then complaining about things like the dishwasher being the bain of your life. And thats it. Your only concern is your dishwasher salt levels. Not every constant sensory input, your past present and future regrets, 5 different conversations that could've gone better and oh my goodness i ran out of mini weetabix therefore i have NOTHING TO EAT?

I'm assuming you mean only "5 different conversations" at any one time, rather than you can only think of 5 that need fixing. I have a savant-like memory for every conversation I've ever cocked up, which is an impressive achievement, if I may type so myself.

(Right now, I can hear my fridge compressor three rooms away and someone down the road is using a battery-operated screwdriver. It's putting me off my train of thought.)

BUT, I will not have anything bad said about dishwashers! They are the greatest invention since the wheel! I live in a soft-water area, so I don't have to worry about salt levels, but I am a bit of a martyr to the old rinse aid.

I think your post has captured life for a lot (most?) of us very well. A permanent state of intense levels of confusion, incredulity, misjudgement, anxiety, overthinking and fear.

Do you think maybe we'll never 'get' everything because we don't have anything to compare our experience to. I personally can understand and relate to most of these posts but for the life of me i cannot relate myself to someone neurotypical. It must be because i have never lived their life and i can only imagine what i have already experienced. I don't know if anyone else relates to this (i'm sure most do), and it's not due to a lack of empathy but i cannot put myself in someone else's shoes. When someone asks me to pretty much predict the future, i can't even begin to imagine. It's similar to the way we can't imagine a new colour we haven't seen before. I think i know very well what is involved in being autistic but i can't separate out the things that are considered normal from the things that are not. The more i reflect on my life and the struggles i've had that have held me behind in my age group - the more i try and tryyyy to imagine what it would be like to not struggle. Are their minds silent? Do they have full control over what they think and every sound they make? Do they go blank and forget how to think? Honestly what does it even mean to take things literally because LITERALLY it would be to take it. Like to pick it up and take it no? And i know that is not what they mean. But then taking a SENTENCE literally... is it being gullible? Has it been taken literally if you action the sentence? Can a neurotypical explain - do they actually EXIST. They must do because honestly how are you ticking the stereotypical boxes of life by the stereotypical deadline (leave school - uni - career around 25ish - married and kids in your 30s and so on) and sleeping and eating and being happy. And then complaining about things like the dishwasher being the bain of your life. And thats it. Your only concern is your dishwasher salt levels. Not every constant sensory input, your past present and future regrets, 5 different conversations that could've gone better and oh my goodness i ran out of mini weetabix therefore i have NOTHING TO EAT?

Yeah, that's why I think I keep going over and over things in my head. Every time it just ends with my imaginary victim giving me a shrug. (Arghh! Body language!)

That aside, I do find it a helpful way to process and absorb everything I've been learning about Autism. If I never speak those scripted words out loud, they still serve some purpose: they explain me to me.

No, I haven't used those terms. I have yet to try out my script on anyone. Mostly, I imagine that I'll go with an all-my-brain-eggs-are-in-one-basket kind of approach: "Your brain can take a task like talking to a another person and break it down unconsciously and allocate some brain cells to filtering out background noise, some to reading body language, some to understanding spoken words, etc. My brain can't. All my brain cells focus intensely on just one part of the task at a time."

Anyway, it's more for a situation where I am asked to explain it, so my victim will only have themselves to blame!

For me, the central and most salient aspect of autism is that it makes life much more difficult for me than it seems to be for most people.

Before my very late diagnosis (and the self-realisation that preceded it) I thought that people in general had similar problems to me, but they were just stronger and coped with them better. I now realise that no, my problems were not even imaginable by most people.

Damojo said:

I always settle on explaining the difference between polytropism (them) and monotropism (me).

Do you try to use these terms to explain it? I suspect you will find their eyes glossing over quickly if you do.

My experience has been to keep it really simple and in laymens terms. I describe things like being a bar with many conversations going on around me, music from the jukebox and cars driving by outside - I struggle to filter out the conversaion with the person in front of me from eveything else because my filters for it never cut in.

Also the thing about developing social skills as a child was affected by the same lack of filters - most other kids learned from observation and mimicing when I was struggling to work out what I was supposed to be observing because there was no rule book to follow.

Hyperfocus is one other positive traits and if you have it then it can be incredubly useful. It is one of the few times we can shut off other inputs and go deep down the rabbit hole, but only really if the subject is a passion of ours.

In essence I find it important to keep it simple, short and relatable for them as most people are honestly not really very interested in learning about it and just ask to be polite.

The script: I've spend many an hour staring at myself in a mirror offering up sentences to most adequately explain something simple, and then with the comment " are you even listening to me?" and then to tweak it and tweak it for maximum impact, as if the power of the expression in itself would make them listen, when of course neurotypicals can't even conceptualise that what I am saying has such great importance that I've rehearsed it ad infinitum to perfection only to have that immense power cast off and wasted by a shrug or an inflected eyebrow which feels as dismissive as a finger to their stupid temple. Rolly eyes.

I think one of the difficulties is that we're all products of our upbringing, if we come from families that are emotionally open and honest, who encourage each other then we be a bit better off than those who's families are less open and honest. How we were educated and where will have its effects, where in the country we were brought up, what social class we come from. Like it or not social class does play a part in how we will be treated by teachers, medical professionals etc, if our parents are motivated to get the best from the system on our behalf, then at least we will grow up being heard, for others they will not have even this basic thing, being heard is so important and I believe can have big impacts on our life chances and our emotional state.

I think this on of the reasons why so many professionals struggle with us, we dont' fit neatly into pigeon holes of class, educational ability or anything, we just are, and we struggle not only with our own feelings but with the perceptions of others, often others who have th power to radiacally change our lives for better or worse.

Stuart333 said:

I am not sure what they mean by type. 

Yeah I’m not sure about this either, but I recently I had an Autistic client tell me she is a “dinosaur-obsessed type of Autistic.” I don’t know if this is kind of like a TikTok trend or what, but apparently there’s different brands of us Autistics, haha.

I also cant cope with stress. I’m not diagnosed, only suspected. My teachers suspected me being autistic in my childhood, but my mom never accepted that.
For me it’s being profoundly different. To not be able to just get “infected” by other people’s emotions. To not be able to understand that someone is lying or joking, i need someone to explain that to me. To struggle read any subtle non verbal cues. To feel like a child lost in a fog. When I’m alone with my aliens and space- I’m fine. When I’m with people- I’m like a child despite being 37. 
It’s also poor interoception, struggling to recognize why I feel weak (thirst, hunger for example), constantly getting hurt accidentally. It’s also living in my own inner world that has a wide range of tastes and colors and I love it. It compensates me struggles that I have from outside 

I wonder if I'm a bit of an outlier. I was diagnosed AuDHD as an adult 23 years ago and did NOT accept I was Autistic until last year. A big problem at the time was a complete lack of any support, explanation or information. I had sought an ADHD diagnosis and figured they just tacked on Autism because they assumed it would apply to anyone working in IT! I just felt stereotyped, so I rejected the idea. I was put on stimulant medication for ADHD and that was it in terms of "support" for the next 20 years or so.

I continued living in a "fog" and didn't understand myself and I just sort of muddled through life until I burned out last year. It wasn't a new experience for me, but I never understood what was causing it. This time, I decided to change how I related to being ADHD. I stopped fighting it and started accepting it more. That helped a lot, but I was still struggling. I decided to look again at my Autism diagnosis to see if there was actually anything to it.

Nowadays, there is a lot of really good information available on Autism. I've spent a year deep-diving into Autism as my new passionate interest. There are lots of first-hand accounts from wonderful Autistic people in podcasts, blogs, books, websites, forums, etc. I had always thought I was somehow uniquely broken, so I was astonished to find that Autistic people are *exactly* like me. The professionals got my diagnosis right all those years ago after all. What helped me more than anything else was my self-directed (and ongoing) education on all things Autism, accepting I am Autistic, and just giving myself a bit less of a hard time.

[INFODUMP WARNING!] One thing that has been going round and round in my head all year is a script (very Autistic) where I try to explain to someone (perhaps a family member) how I might differ from them. I always settle on explaining the difference between polytropism (them) and monotropism (me). I like how predictive monotropism is as a theory and how it describes a different brain, rather than a disordered or deficient one. My brain is very good at doing one thing at a time, and will do it with great intensity, but it gets overwhelmed if I try to make it do several things at once. For example, I can listen to the words a person is speaking, or I can watch their facial expressions and body language, but I find it hard to do both at the same time, so I tend to break eye contact when I'm listening. I can consciously force myself to hold eye contact (i.e., mask), but it requires much greater concentration and is stressful and tiring. ... Then my script begins to develop into something more elaborate and there I am lying awake at 4 am (again) wondering if I'll ever get back to sleep! It's a work in progress. I recommend learning about monotropism, though.

So, do I know what kind of Autist I am? No. I haven't got a clue. I don't even understand the question. I don't understand what is meant by "kind". I don't have enough context to go on. Perhaps I could just answer with "level 1" or "average" or "not very sporty", but is that the kind of answer the questioner was looking for? This is something that I think I won't lose much sleep over. My education, OTOH, will continue. I recommend it.

Stuart333 said:

Your American person has possibly had more therapy as it is more common

Agreed. There is a reluctance from many Brits to seek professional help for their mental health for a range of reasons and it does reflect on their lack of self knowledge on the whole.

I did spend a lot of time with therapists getting to know my autism and develop useful coping skills for the traits that impacted me and combined with my own research and discussions on this site, I now feel I have a really good understanding on what my autism is and how to live with it.

It is very common now for me to be able to stop in the middle of any situation and see what influences my autistic traits are having on what I am doing / feeling, and to consider if a different approach is needed. Masking for short periods of time is a great skill to have to co-exist with others while learning to not care about others opinions is an awesome survival skill.

Doing these effectively takes understanding and practice which are very hard to achieve on your own, so why not get a professional to train you, just like most do when learning to drive.

One other skill I learned was to use my lack of filters for inputs and a bit of meditation to be able to sit quietly in a bar / restaurant and take in the huge quantity of things happening around me in order to get a feel for the place, plus to identify issues that are worth keeping an eye on.

Somehow the feeling of that flood of input has gone from being overwhelming to being an ally - and it has helped me in being able to focus when I really need to and shut it out so I can talk to the people with me and not struggle.

When you do decide to work with a therapist, make sure you interview them first to assess if they really understand your autistic issues and explain how they would approach helping you with them - trust your instinct on whether they sound sincere and knowledgable and don't be afraid to not use them if they don't "feel" right.

I had 50 years of being undiagnosed and whilst being diagnosed has helped somethings fall into place and has allowed me to know there are somethings I will probably never "get", I can't think of what being autistic means really either. Yes, I can list symptoms and stuff, but I don't always feel them, I can only be me and I'm the same me as I was before diagnosis, just a bit older and hopefully wiser.

I think some people identify more with being autistic than others and make into a big part of who they feel they are, it's OK not to feel that way, just try and be as authentically you as you can be and maybe read up on ND a bit more. I think autism is an enigma to a lot of professionals, they like things that fall into neat boxes with solutions attached to them, ASC isn't like that, we're all different, but they can't seem to cope with that, they seem to feel powerless in the face of something so big and diverse.

Everyone is different, everyone he has a different life time of experiences which shape them.

Your American person has possibly had more therapy as it is more common, they may also have read or watched a lot. I expect it is just a function of time spent on looking at themselves and where their views and issues came from and what they want to do about it, i.e. coping or minimising strategies. Doesn't mean their answer is correct, but at least they think they know where they are.

A British stuff upper lip, muddle through, introverted cultural difference will no doubt also influence the difference.

But I am not sure you can be fully educated by someone else. You need to observe yourself because only you know what is in your head and what your emotions and feelings are.

Since my diagnosis a week ago I have started observing myself carefully. I have succeeded in other things by careful observation, so why not watch myself.

For example I went to Oxford yesterday and I noted how I felt when getting ready, coping with road closures, find the way, adapting to the changes since last visit, coping with newness, experience of noise and crowds, experience of heat, seeing people, having a meal and following conversations. E.g. heart rate, anxiousness, calmness, facial expressions, etc.

You also want to look at what to like and are good at, as well as what you are not good at.

I tend to miss these things because on a day to day basis I have little newness and many fixed routines.

So what autism means is your strengths and weaknesses and your emotional and physical responses. While there are trends, these are personal.

I am not sure what they mean by type.