Mental Health Please describe how autism affects you personally - autistic people only, not family

Eligiu

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This is an issue that comes up every single day for me and it has plagued my existence and my ability to thrive for as long as I can remember. I'm not being conceited when I say that I know I'm smart. On all of my therapy reports they list my strength as my extreme intellectual capacity. Then they list my many weaknesses. But this intelligence? Look it doesn't actually help me all that much always. And for a lot of stuff it actually results in support being removed from me.

I've noticed a general lack of understanding of autism on this forum. Loads of people have autistic friends or family members and I have to tell you something. No one is going to be exactly like your autistic cousin. You know an autistic person and that means exactly that. You know one single autistic person it's a huge spectrum and it presents completely differently in every single one of us, with totally different strengths and weaknesses. Every single one of my autistic clients has been completely unique in their own special way. That is autism.

And a lot of people are still using the old 'high functioning' 'low functioning' stuff. Nope. We don't say that. It's astoundingly ableist because it frames higher functioning people as being worthy of praise for being productive members of society while labelling often non verbal Autistic people with intellectual disability stupid and worthless and a burden for not being able to work.

The old diagnostic criteria also didn't work. Aspergers was way too broad. Some people were called high functioning but they never managed to move out of their parents house and live independently, how does that work?

Turns out if you're assessing autism you need to assess autism and not iQ. So scrap the functional labels and bring in the new system of levels of support needs.

1 is requires support. A person like this can hold down a job for almost all the time, manage socially, and have minor sensory issues. You may not even notice they're autistic.

2 is requires substantial support. You definitely know, and they really need help, but there's a level of independence.

3 is requires very substantial support. You know, and it's unmistakably obvious. No independent living skills, need 1-1 support 30+ hours per week or group homes.

I have noticed a trend in my life with services and also on this forum where a person like myself is, well basically accused of lying about what level they are for a reason which shows a fundamental misunderstanding of autism.

I'm too smart.

They're not measuring my IQ people. They're measuring the autism. Here is a list of ways I am completely and utterly disabled by this condition. Non exhuastive.

1. I bulk order Lego delivered to my house and go into debt because I cannot comprehend the value of money, a very autistic trait. I am 27 and have zero savings. I will then build the Lego obsessively for 10 hours while not stopping to piss, forgetting to eat every meal, not drinking any water, and mumbling nonsense to myself while rocking in my chair. The reason? I'm hyper stressed and it soothes me and calms me down.

2. I have to be prompted to eat every single fucking meal. A support worker calls me to remind me in the morning. One comes at lunch, another at dinner. My plan got rushed through after my planning meeting (the government funding which pays for the support workers) as I was flagged as being at high risk of self neglect due to not eating for days at a time due to simply forgetting.

3. When I do eat, my diet is restricted to a handful of foods which I happen to obsess with at any given period. The top contender and long standing champion currently is a brand of honey flavoured yoghurt which has lasted a full 1.5 years. For the first year it was the only yoghurt I ate. After 5 months I can proudly state I managed to add a back up flavour in. The supermarket now stocks extra of both brands for me and the cashier's know im the guy who buys the yoghurt. Furthermore, the issue? I currently have a different flavour of yoghurt in the same brand as the original in a flavour I actually enjoy, but it's been sitting in the fridge for a month and I cannot bring myself to try it as it just isn't the fucking same and it's different and wrong and if I try it then I don't like the honey anymore that is a crisis disaster because I only have two flavours I can eat. It's too much of a risk. Imagine not even being able to try a new flavour of yoghurt.

4. I cannot shower often because the feeling of water running over my body is deeply uncomfortable. I bathed until my late teens. This extends to washing my hands, washing my face, doing dishes, or even getting wet. Walking in the rain is torture. I have specially ordered waterless bodywash to use on days I don't shower. A shower takes me a full day to work up the motivation to do. It's my support workers most difficult task as I will do anything to avoid it.

5. I cannot do any chores independently. Tidying, vacuuming (noise) dishes, laundry. I hope to eventually be able to do all but the dishes without support after a couple of years. But I'm not fucking touching gross dirty water. The exception to this is that I can obsessively organise my filing cabinets which has all my important documents in it any amount of times for pleasure. Ridiculously really. Highly organised though.

6. If I have an appointment and it gets cancelled and I have planned my day around this ooooooh boy are we in for a bad time. This is a disaster. I will go home in misery, cancel every plan for the rest of the day (even if it's 9am) because they'll all go wrong anyway, and fucking sulk in depression until the next morning. If friends arrive 5 minutes late somewhere I will get furious - my best friends have been trained into sending their live GPS location to get around this issue. If a friend changes the plans I tell them not to bother.

7. My university transcript, before I got complete burnout (Autistic burnout is a thing and it is completely debilitating and can last year's) my transcript was totally unbalanced. Passes and credits in areas of disinterest. Distinctions and high distinctions in topics I loved. Got the top mark for one course in my entire grade and won an award. Was asked to submit several essays written on highly specialised topics (native title comparative Law, issues and ethics on sentencing and jailing of transgender offenders, the ongoing social justice issues of deafness and being hard of hearing in aboriginal populations and the impact this has on overincarceration) - no one had really written much about these topics and I'd done it well. It's something I'm working on while I work on getting my functioning back up and wait to re enroll in my remaining post grad topics. It'll keep me connected to law. On the topic of law, the reason I was able to complete a law degree with then undiagnosed autism is actually really simple. Being obsessive around social justice is a typical Autistic trait. We have a boner for justice and fairness and we get suuuuuuper fucking mad when shit is unfair. My mum says at preschool I used to make fun with the bullied kid and invite them home. I've volunteered for over a decade with foster kids. My job is helping other Autistic people. My huge success for myself was realising a law degree would give me the chance to be able to have my 'special interest' which is to say my autistic lifelong obsession be my actual career. I can literally find work as a disablity advocate in a law job with accomodations for me needs helping people like me get support by using my lived experience and education. How fucking perfect is that. And that's what drove me through it even when it was hard. Knowing I could advocate for people who needed it. However I was fucking shocking at any uni course I viewed as not being useful. So it's not always great.

8. This is a true story. In 2018 I went out to a gay nightclub and I apparently danced briefly with a girl who was friends with some friends. She got added to a group chat I was in. Unbeknownst to myself, a friend was painstakingly setting us up. I'd post gym selfies to the chat during my 'self improvement' hyperfixating phases and she would immediately react. That meant practically nothing to me. My friend suggested I reach out and I was like 'dont see why, haven't spoken to her' and didn't engage. This girl got on 2 busses for 3 hours to come to my lacrosse game on a Saturday morning. She couldn't drive. When I saw her there I went 'that is odd, I didn't think anyone liked lacrosse enough to go to that much effort. Golly gee she must really like sport'. After the game she asked me to drive her 45 min home. My response? 'i don't really feel like it, it's super out of my way besides you got the bus here just take it back'

Cue her storming off and my entire lacrosse team standing there dumbfounded. My old housemate walked up and went 'did you .. actually just do that' and I went 'do what? I don't feel like driving that far, plus I barely know her' and he's like 'this is not happening. You cannot be this dense' 'dense?' 'its real? Dude she likes you' and I go 'how on earth do you know that' and he just groaned and went 'jesus Christ dude how do I not? She got on multiple busses for several hours to watch a random hardly played sport a guy she danced with at a bar and has been reacting to all his shirtless photos to in a group chat is playing in! Fuck man I've never seen something more obvious' and I went 'that seems stupid, it's not obvious to me, I thought either she must like sport a lot or she had nothing better to do' and he went 'how much clearer could she have made it' and I go 'she could literally have just said "I like you" and I would have understood'

Another example.

I ask a guy I've been on 3 dates with to come over for lunch and to work on a puzzle. We have lunch and it goes well. Go home. I immediately pull out the puzzle and get to work. He does too for a bit then disengages and moves to my bed. He encourages me multiple times to join him but I decline each time stating I 'really want to finish the puzzle'. Eventually he says 'why don't you come here for a cuddle' and I say 'well I don't particularly want one'

He eventually leaves then blocks me on tinder. I ask a friend why. They explain, very clearly, that he interpreted my invitation as lunch and sex. I replied that I had told him I'm autistic and that was ridiculous because I obviously meant lunch and a puzzle because if I wanted lunch and sex I'd fucking say come over for lunch and sex and directly fucking ask.

And because I missed each and every cue he dropped I get blocked.

This impacts me profusely because people, both men and women, find me attractive initially and my shyness is cute and endearing. They adore that my way of asking for a kiss is to go 'may I kiss you' because I have zero way of recognising if they do or don't want one and I never want to do it without consent.

But they tire of it quickly. They realise I'm not shy, I'm severely autistic. And this won't change - I'm not going to improve and get better with the cues. I will constantly fucking miss cues and the amount of work they need to put in to communicate and effectively work with me will be monumental.

So they drop me for less work. Every fucking time. Once they realise it's who I really am, they're not keen.

9. Friendships are a mess. Trying to get friends to communicate in a proper way and help me out by being direct and clear is infuriating. I have asked so many friends to do me the simple courtesy of actually telling me when I've upset them so I can please learn from the mistake because if I don't realise I did something wrong I cannot possibly fix it.

And they decide that oh my god it's just too hard to do this and Eli is asking for way too much.

That is all the stuff I can think of now. The thing is autism affects me so profoundly and constantly that I cannot possibly put into a forum post how completely debilitating it is and how burnout destroyed my life.

And being smart does me not one goddam single fucking bit of good and actually loses me supports because people have this terrible belief that to have severe autism or to be highly impacted by it you need to be stupid. It is not true. I was referred to a clinical intervention service by my long term Psychiatrist who suspected autism but was not qualified to assess it. I booked an appointment and got dozens of pages of paperwork filled out with information about me and my behaviour from a sibling, friends, and family. I wrote a list of everything I could think of that I did which fit with autism. I sat through a THREE hour assessment with a developmental psychologist who has specialised for FIFTEEN years in diagnosing women and transgender people like myself with autism in adulthood, especially after sudden burnout. I answered questions I had no idea what she wanted to hear. I didn't know the goals. Vaguely worded stuff like 'how did you interact with other people at your placement'. After it all she said 'well you're autistic. Very Autistic. And just so you're aware if you weren't phenomenally intelligent you would have been picked up ages ago because your intelligence is what kept you one step ahead until you couldn't juggle it all anymore. Also, if you were assigned male you'd have been diagnosed as a child. You missed out. You're level 3, and pretty badly so. Sorry you got screwed over' and I sat there stunned because I was truly expecting level 1. When I originally booked an appointment I wasn't booking to get a diangosis for the support funding. I just wanted to know for my own interests. The thing about levels is they fluctuate, they're an assessment of your needs *at that point in time* so if I'd been assessed when I booked the appointment I actually would have walked out as a level 1, perhaps level 2 if the assessor was feeling very generous. And I go really wouldn't have cared cause autism is autism and it's different for everyone and we all have totally different needs and really I was muddling along pretty well. No ability to cook but sometimes I had stretches of being a bit gourmet. Socially awkward but smart enough to fake my way. I wouldn't have asked for the funding as I wouldn't have needed it. But when I got assessed? I was fucked completely. And this is how I can say with certainty that being level 1 is a far sight easier than being level 3 and the two cannot really be compared. I functioned as a level 1 and autism was an occasional annoyance. At this stage in my life it consumes every aspect of my life. I want to go back more than anything in the world. And I fucking can and will because I will work my ass off in therapy since I am so blessed to live in the only country in the world which gives disabled people unique, personally funded hundred thousand dollar support packages to pay for support workers and all their therapy.

So I'm going to use my funding and work myself back to level 2 and if everything in my life goes perfectly to plan I may get to level 1. And I'll finish my degree and become a disablity advocate and I'll give whatever I can back to my community with what I learnt. I didn't battle through law school with horrific mental health to let autism fuck me over after it all. I'm not giving up yet.

And I will fucking fight for the people like me who get called 'high functioning' because I would like people to take a second to imaging that you have just sat and explained to someone every single task you cannot do independently and how your support workers need to tell you as a 27 year old man to change your shirt before you both leave as it's stained (but you don't care since it's irrelevant to anything so it shouldn't matter) then to brush your teeth and not forget your keys while you head off to one of three therapy appointments and you wrote in your lived experience statement that you have totally given up on ever having a long term partner because the possibility they someone will ever tolerate your aversion to physical touch and complete inept behaviour in regard to picking up cues for cuddling, kissing, sex, flirting, or positive affirmations any longer than the initial period where they think that's cute so you'll just settle for a dog. And you explain how sensory issues are so intolerable that being in a noisy cafe is an assault on your senses so the reason you rock side to side and fiddle is to try and focus on one or two things to streamline the barrage so that you can focus on the sentence your friend is saying across the table.

And people hear you say all that then they go 'you're so articulate though you must be very high functioning'

Imagine, for one moment how that feels. And think about that next time you consider an autistic person 'high functioning' or 'exaggerating their deficits' because they don't meet your expectations of an autistic person.

I invite any other autistic person, whether you use a level diagnosis or Asperger's or autistic disorder label (while not in use people may feel attached to them and that is fine) to write about how autism impacts them so that people can really understand that each of us is completely different and struggle in totally different ways and that doesn't make any of us less autistic than another person. Some may be less profoundly impacted day to day, but they are just as autistic as anyone else.

I am tired of the common misconceptions around autism and want better understanding so please contribute.
 
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Thank you so much for taking the time and effort to type all of that out and share it with us @Eligiu <3 I'm not going to say that I understand because I can't possibly understand what it's like for you. But I appreciate that you've shared a bit of a snapshot of what you experience on a daily basis, to raise awareness and to teach us about autism. It's really important so that people with autism can be included and feel equal and accepted. I see you and I hear you.
 
appreciate some education, person i know has an autistic daughter and id often say high and low functioning, but now i understand more, ty
 
I don’t know how to offer advice as I’m not deeply familiar about the condition of Autism Spectrum Disorder. However, the most talented self-made person that I’ve ever known is Autistic and I’m very very inspired by him if it means anything to you.
 
Honestly guys I just really like people to get through their heads is that every single one of us is completely different. We share behaviour but it manifests totally different. I have a boner for helping minorities but fuck me dead, trains are shit.

A super common unspoken about issue with autism is that we struggle to recognise and name emotions in ourselves and others. For me this manifests in two ways.

Myself: if I tell friends something happened and they ask me how I feel, I automatically describe the events and expect them to figure it out. For example.

'hi man, dad did something abusive'

'how does that make you feel'

'well he did X so'

'yes you said that but I asked how you feel'

'i just told you he did x'

'eli listen to the words I am saying, how do you feel'

'i don't know what to say'

'ok I'll try something else. Are you okay'

'no I don't think so'

As you can imagine, probably frustrating to do that dance every time. However this leads into how it manifests with others

*Person walks up to me with unfathomable facial expression and bizarre body language I cannot comprehend*

'hi!' *excitedly*

'eli come on can't you tell I'm piss off? Be a bit in tune'

'uh sorry? I can't tell. What happened'

'my boyfriend broke up with me then I had a car accident'

At this stage my brain goes into overdrive. I'm searching through every part of the Sacred Script to Social Interactions that I have painstakingly studied and memorised over my 27 years to analyse the data I've been given and extrapolate appropriately. Breakup means sad. I know that. Car accidents stressful. Not too hard. Friend is feeling sad and stressed.

'you must feel very sad and stressed out'

'exactly'

(To myself: thank you God I got it right this time)

But consider this. That analysis and extrapolation I did? That happened in less than a second. I searched through my database of social interactions and learnt behaviour to find exactly what I needed to respond appropriately. That is not me being able to read body language naturally. That is totally learnt behaviour and no one can point to me and say I'm socially skilled when the effort I put into doing this is mammoth.

People need to realise that there is no right type of autism and I've been disheartened by comments such as a guy on another post telling me that he didn't actually know what 'levels' are (the new version of diagnosis) but then he say I clearly am basically lying about being level 3 because I use a computer and talk to people online. Which is a bold statement to make considering you don't understand how levels work and you shoehorned your understanding of functional labels into levels in a very haphazard and not at all accurate way.

It's also so incredibly rude to intellectually disabled and non verbal level 3 people. Oh, so level 3 people all have to be so fucking stupid they cannot operate a computer? It shows a bafflingly low level of understanding of any type of autism bar that person's own experience as someone with Asperger's because the vast majority of non verbal level 3 people RELY on iPad or computer Alternative speech to text technology to communicate in their preferred method into being verbal. They like do they just not exist because this guy believes I am too smart to be non functional.

We share a diagnosis. It's invalidating as hell when my existence is denied by services because I'm a statistical anomaly where almost 100% of level 3 people have severe developmental disabilities aside from autism. Compared to them I lead a charmed life and my favourite client is in that's situation and he suffers immensely. However, I'm that 0.5% and it would be wonderful if not everywhere I went I got smart ass and snide comments about me exaggerating my disability because I happened to be born intelligent.
 
appreciate some education, person i know has an autistic daughter and id often say high and low functioning, but now i understand more, ty
This is not your fault. It was massively pushed for in society due to capitalist value of worker productivity. Disabled people will forever suffer under capitalism as if we have zero productive value we are worthless, and worse, caring for us wastes resources.

Please try your best to remove this language from your speech. Autistic is totally fine, but referring to support needs even if you don't know the level is also fine.

Calling someone low functioning is for all intents and purposes calling them retarded and a burden in a much more polite way. There's a reason the autistic people who didn't have intellectual disability weren't called low functioning even when they sort of were.

And it also impacts non verbal people. An autistic activist called Ido Leder wrote books about being put through autistic torture dog training for children to de autism them which results in PTSD (aka applied behaviour analysis, the person who founded it can be quoted as saying 'when you have an autistic child you have a body but not a person' and whose therapy used electro shock on autistic people to stop us doing harmless autistic behaviour purely to make us seem normal. And no it's not much different today) where he was forced to do fucking baby level activities as an 8-10 year old and just point at fucking flashcards with words on them but it had to be in perfect order and exactly what the therapist wanted for him to get the reward. And he was forced to make eye contact and sit still but he still made zero progress with speech while his mum was lied to and told this was the only way to fix him.

And ido's mum pulled him from therapy and just explored any way of helping him talk until she found soemthing and simple as a fucking letterboard and everything unlocked and he told her how he understood every single word everho E says, he isn't empty headed, he understood the therapists calling him dumb and saying he couldn't make progress because be was completely non functional and he tried to point to the right flashcards but he had an undiagnosed movement disorder which made his hands not always be under his control so sometimes he got it wrong but that wasn't his fault. And he would sit through the demeaning activities dreaming of going to mainstream school like the other kids and learning maths and English and maybe a foreign language and his mother felt completely ashamed about what she had inadvertently done to her child.

Ido used his letterboard with a school aid who would speak his sentences for him. He fucking graduated TOP of his mainstream honours senior class and wrote THREE fucking books and was a publisbed author at 16 when he was TOTALLY NON VERBAL and missed years of fucking school being in pointless torture therapy.

And people think a person like him is stupid cause he won't talk? What the actual fuck? Get a hold of yourself, he is smarter than you and I bet he will achieve more too (royal you, not directed at you)

Non verbal people are NOT stupid and when given a method of communication they like, they flourish.

These mindsets have to change.
 
Honestly guys I just really like people to get through their heads is that every single one of us is completely different. We share behaviour but it manifests totally different. I have a boner for helping minorities but fuck me dead, trains are shit.

A super common unspoken about issue with autism is that we struggle to recognise and name emotions in ourselves and others. For me this manifests in two ways.

Myself: if I tell friends something happened and they ask me how I feel, I automatically describe the events and expect them to figure it out. For example.

'hi man, dad did something abusive'

'how does that make you feel'

'well he did X so'

'yes you said that but I asked how you feel'

'i just told you he did x'

'eli listen to the words I am saying, how do you feel'

'i don't know what to say'

'ok I'll try something else. Are you okay'

'no I don't think so'

As you can imagine, probably frustrating to do that dance every time. However this leads into how it manifests with others

*Person walks up to me with unfathomable facial expression and bizarre body language I cannot comprehend*

'hi!' *excitedly*

'eli come on can't you tell I'm piss off? Be a bit in tune'

'uh sorry? I can't tell. What happened'

'my boyfriend broke up with me then I had a car accident'

At this stage my brain goes into overdrive. I'm searching through every part of the Sacred Script to Social Interactions that I have painstakingly studied and memorised over my 27 years to analyse the data I've been given and extrapolate appropriately. Breakup means sad. I know that. Car accidents stressful. Not too hard. Friend is feeling sad and stressed.

'you must feel very sad and stressed out'

'exactly'

(To myself: thank you God I got it right this time)

But consider this. That analysis and extrapolation I did? That happened in less than a second. I searched through my database of social interactions and learnt behaviour to find exactly what I needed to respond appropriately. That is not me being able to read body language naturally. That is totally learnt behaviour and no one can point to me and say I'm socially skilled when the effort I put into doing this is mammoth.

People need to realise that there is no right type of autism and I've been disheartened by comments such as a guy on another post telling me that he didn't actually know what 'levels' are (the new version of diagnosis) but then he say I clearly am basically lying about being level 3 because I use a computer and talk to people online. Which is a bold statement to make considering you don't understand how levels work and you shoehorned your understanding of functional labels into levels in a very haphazard and not at all accurate way.

It's also so incredibly rude to intellectually disabled and non verbal level 3 people. Oh, so level 3 people all have to be so fucking stupid they cannot operate a computer? It shows a bafflingly low level of understanding of any type of autism bar that person's own experience as someone with Asperger's because the vast majority of non verbal level 3 people RELY on iPad or computer Alternative speech to text technology to communicate in their preferred method into being verbal. They like do they just not exist because this guy believes I am too smart to be non functional.

We share a diagnosis. It's invalidating as hell when my existence is denied by services because I'm a statistical anomaly where almost 100% of level 3 people have severe developmental disabilities aside from autism. Compared to them I lead a charmed life and my favourite client is in that's situation and he suffers immensely. However, I'm that 0.5% and it would be wonderful if not everywhere I went I got smart ass and snide comments about me exaggerating my disability because I happened to be born intelligent.
Thank you for giving us more insight into the condition.
 
I've wondered at times if I'm autistic. I think that THC/CBD preparations might be useful for it in some cases, don't remember much mroe though.
 
I've wondered at times if I'm autistic. I think that THC/CBD preparations might be useful for it in some cases, don't remember much mroe though.

My client with the highest needs used to be on proper medical level THC/CBD and it was good but he ended up having some kind of reaction to it so his parents switched him to Terpines and they seem to work better.

Another very autistic but also very ADHD trait so anyone with ADHD will probably also related to this:

You put a meal in the microwave and reheat it. Don't want to wait because no patience so you sit down and play oh let's say animal crossing, your current hyperfixation. Problem is you're about to hyperfixate now. The beeper goes off, but you say 'well it does need to cool down a bit' and you leave it. For hours. Hours later you remember you reheated it so in annoyance you reheat it again. Rinse and repeat upwards of 5 times if you are me and now it's taken 6+ hours to get your food out of the microwave.

But it doesn't end there. It's still too hot. So you play the game while it cools down.

For far too long. You pick the bowl up and guess what? The food is cold.

Guess you're not gonna even bother to eat today. Good thing you have a box of crackers to snack on instead.

This is a common problem for most autistic people I would think, many of my clients won't eat unless food is put in front of them and I'm very much the same. It's not laziness, a lot of us don't often feel hunger or have much interest in eating so it's sort of a chore.
 
I have a couple of clients who I tutor with different year levels at school. One is 11 and the second is 17. This is part of my job as a support worker.

I only tutor English based subjects as my maths is very poor.

A trait that autistic people almost universally share in terms of studying is executive functioning and planning problems.

My 17 year old is incredibly smart. Truly astonishing to spend time around. His math talent is incredible, however unfortunately he refuses to show working out which loses him huge amounts of marks.

His English? Well let's just say he got let down at primary school. The school decided that his handwriting and written English was so poor and too difficult to grade that they would assess him verbally. So now the poor kid is 17 years old and I would place his written English skills at around 12 at the maximum.

He has a pathological ability to hand in assignments for music, music theatre, and drama (he plays 7 instruments to a concert grade level) while not being able to submit a SINGLE English, maths, religion or ethics piece of work. I have to get the due date off him when he gets the assignment then text message him the day it's due and request he submit it.

I've been working with him for over a year to try and develop some kind of study habits with him which could possibly work. I've thrown all my tips and tricks at him and nothing yet has stuck. However this year at the start of term, he himself printed off a due date poster for his assignments. Has he used it yet? No. But he did it.

My other client aggressively avoids reading. I spend 30 minutes reading with him every shift and even with me sitting right next to him, he will skip words, say the wrong thing and not correct it, whisper and you name it. I just want his out loud reading to improve so that he will not be so far behind at school (age 11, reading age 7) but despite my best efforts I haven't had much luck engaging him. My biggest success was showing him Animal Crossing, a videogame which is extremely dialogue heavy and which requires a lot of reading to make progress in which he ended up buying it with his own money. Now he's been playing it, and as I did warn him - he needs to be making better effort to read all the dialogue because otherwise he will get stuck.

Not all autistic people are studious super computers and amazing at being educated either. It's not a failing when we don't fit into the 'amazing chemist/mathematician/physicist' category. Sometimes we just want to do our own thing and that isn't where our strengths lie.
 
I've only just been diagnosed with Autism a couple of months ago, very late in life at 51.

I am still deep into a You Tube Autism channels rabbit hole, learning about the condition, hearing about other peoples experiences, and trying to work things out. This is where I get to use one of the strengths and positives that Autism gives me - I like having subjects to go deep into.

The way my Autism affects me is with the way I present to the world. The world can seem a hostile and unfriendly place, and while it may be very few strangers who make mean comments and laugh and things like that, these things deeply affect me and when this happens I feel like I just fucking hate people as a result. When I'm not being ridiculed or insulted, there can be people obviously just not understanding me at all, and some awkwardness. These are the main issues that my variety of Autism causes me.

Benzos help me a lot. They seem to increase my social smarts (subconscious masking) a great deal, so that I can manage many more situations without incident or negative attention. They also reduce my severe social anxiety. If I hadn't been diagnosed and researched so much I would never have come to understand what is happening to me when the anxiety becomes too much to deal with, and I enter Autistic shutdown state. I had nothing to frame and understand these experiences with before, but at least I do now. I know that I am not "brain dead" or "not all there" or any of those other mean things people might say. I no longer have to internalise the bullshit from other people who do not understand. This is liberating.

I have held down jobs for most of my life even though working relationships have often been difficult. Looking back on things, it feels like that when I feel more accepted and free to be myself without judgement, this spills over into all areas of my life, and feels like it reduces the severity of my Autism.

I have been offered a short series of group sessions over Zoom which start soon. Otherwise it seems that it is going to be down to me to find and work out whatever kind of support it may be that could help me.

Things seem more difficult than ever right now, hopefully this is just some sort of transition phase, a transition into something better.
 
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I've only just been diagnosed with Autism a couple of months ago, very late in life at 51.

I am still deep into a You Tube Autism channels rabbit hole, learning about the condition, hearing about other peoples experiences, and trying to work things out. This is where I get to use one of the strengths and positives that Autism gives me - I like having subjects to go deep into.

The way my Autism affects me is with the way I present to the world. The world can seem a hostile and unfriendly place, and while it may be very few strangers who make mean comments and laugh and things like that, these things deeply affect me and when this happens I feel like I just fucking hate people as a result. When I'm not being ridiculed or insulted, there can be people obviously just not understanding me at all, and some awkwardness. These are the main issues that my variety of Autism causes me.

Benzos help me a lot. They seem to increase my social smarts (subconscious masking) a great deal, so that I can manage many more situations without incident or negative attention. They also reduce my severe social anxiety. If I hadn't been diagnosed and researched so much I would never have come to understand what is happening to me when the anxiety becomes too much to deal with, and I enter Autistic shutdown state. I had nothing to frame and understand these experiences with before, but at least I do now. I know that I am not "brain dead" or "not all there" or any of those other mean things people might say. I no longer have to internalise the bullshit from other people who do not understand. This is liberating.

I have held down jobs for most of my life even though working relationships have often been difficult. Looking back on things, it feels like that when I feel more accepted and free to be myself without judgement, this spills over into all areas of my life, and feels like it reduces the severity of my Autism.

I have been offered a short series of group sessions over Zoom which start soon. Otherwise it seems that it is going to be down to me to find and work out whatever kind of support it may be that could help me.

Things seem more difficult than ever right now, hopefully this is just some sort of transition phase, a transition into something better.
What aspects of the social interactions at work were difficult for you do you think?
 
Basically all aspects of social interaction are difficult for me. However, Benzos make this less of an issue, and things feel much more manageable most of the time..

I am honestly pretty fucking amazed that there is very little mention of how useful Benzos can be for treating the symptoms of Autism, and specifically for difficulties with social interaction and anxiety caused by this. I have looked online (but not directly into academic research as of yet) and have only found a tiny number of research items mentioning that Benzos can be useful in some cases. There doesn't seem to be any great interest in this area of research which baffles me slightly. There must be reasons for this. I am aware that there is quite a massive benzo backlash going on currently, and that they are an out of favour class of medications at the moment, amongst many sections of the community. So the lack of reasearch and interest in this subject may be due to that and other complex reasons that I am not aware of. Whatever the case, the apparent lack of research and interest into this subject and treatment option seems wrong to me. Whatever the larger picture, I am very thankful that I have found something that works for me personally and greatly improves my quality of life.

Most people familiar with benzos know that tolerance and potential addiction tend to be the main problems associated with their use. So things need to be arranged so that breaks in dosing can be taken, in order to help prevent these problems. Things can get quite complicated sometimes in trying to achieve this. The more things you have going on in your life the more difficult it becomes to do. Keeping myself occupied with healthy interests is good for me though so life becomes a balancing act.
 
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I've only just been diagnosed with Autism a couple of months ago, very late in life at 51.

I am still deep into a You Tube Autism channels rabbit hole, learning about the condition, hearing about other peoples experiences, and trying to work things out. This is where I get to use one of the strengths and positives that Autism gives me - I like having subjects to go deep into.

The way my Autism affects me is with the way I present to the world. The world can seem a hostile and unfriendly place, and while it may be very few strangers who make mean comments and laugh and things like that, these things deeply affect me and when this happens I feel like I just fucking hate people as a result. When I'm not being ridiculed or insulted, there can be people obviously just not understanding me at all, and some awkwardness. These are the main issues that my variety of Autism causes me.

Benzos help me a lot. They seem to increase my social smarts (subconscious masking) a great deal, so that I can manage many more situations without incident or negative attention. They also reduce my severe social anxiety. If I hadn't been diagnosed and researched so much I would never have come to understand what is happening to me when the anxiety becomes too much to deal with, and I enter Autistic shutdown state. I had nothing to frame and understand these experiences with before, but at least I do now. I know that I am not "brain dead" or "not all there" or any of those other mean things people might say. I no longer have to internalise the bullshit from other people who do not understand. This is liberating.

I have held down jobs for most of my life even though working relationships have often been difficult. Looking back on things, it feels like that when I feel more accepted and free to be myself without judgement, this spills over into all areas of my life, and feels like it reduces the severity of my Autism.

I have been offered a short series of group sessions over Zoom which start soon. Otherwise it seems that it is going to be down to me to find and work out whatever kind of support it may be that could help me.

Things seem more difficult than ever right now, hopefully this is just some sort of transition phase, a transition into something better.

Thank you so much for contributing your experiences to this thread. I'm really glad someone else finally did.

Here I was feeling like I was late diagnosed at 26! Goes to show that it's just a matter of perspective.

Tell me, what was the main factor pushing you to get a diagnosis? For me it was curiosity mostly, most of my friends said I was autistic, all my clients parents did (I work with autistic teenagers and kids) as well as my psychiatrist.

If you would like, I would be happy to connect online to speak together as late diagnosed people to talk about experiences and issues we face if that is something you'd be comfortable with. I was meant to start an online social group but that hasn't eventuated yet. If so, send me a DM and we can connect privately.
 
Thank you so much for contributing your experiences to this thread. I'm really glad someone else finally did.

Here I was feeling like I was late diagnosed at 26! Goes to show that it's just a matter of perspective.

Tell me, what was the main factor pushing you to get a diagnosis? For me it was curiosity mostly, most of my friends said I was autistic, all my clients parents did (I work with autistic teenagers and kids) as well as my psychiatrist.

If you would like, I would be happy to connect online to speak together as late diagnosed people to talk about experiences and issues we face if that is something you'd be comfortable with. I was meant to start an online social group but that hasn't eventuated yet. If so, send me a DM and we can connect privately.
No problem, I hope it helps in some way.

Yeah it seems I kind of fell through the diagnosis cracks due to the era I was born in. If I had been born 50 years later that never would have happened. If I had been diagnosed early the chances are that I would not have developed a full blown anxiety disorder during Uni due to not understanding why social interactions were / are so hard. But there's no point wasting time and energy being bitter about that. I'm too old for that now, and have already wasted far too much time and energy on negative emotions.

I had looked into the possibilty that I was Autistic some 10 -15 years ago but at that time, as far as I understood it, the research seemed to say that it was impossible to get through childhood without being diagnosed. Also I did not understand that you don't have to tick every box. And so because I thought 'I can read people's expressions' therefore I can't be Autistic etc etc. For these 2 main reasons I ruled myself out, even though looking back numerous people had suggested to me that they thought i might be Autistic / have Aspergers, I dismissed it every time for the reasons above.

It was an accumulation of things building up that pushed me towards my eventual diagnosis. I was doing CBT for social anxiety and although it did basically Fuck All for my anxiety, the therapist pushing me to question and examine things and reasons was probably a big factor. Also watching a TV show about the British Wildlife presenter Chris Packham's Asperger's at just the right time, it just clicked. I think the word for what happened there is serendipity. That fits how I felt at the time. After watching that Chris Packham TV show, my You Tube Autism research and life experience obsession began and I have not stopped since. I was about 95% sure of my self diagnosis before i got the official confirmation some 6 months after all of this. It's so good to understand the why behind everything finally. There was a reason for everything after all.

It's not like it's all happy ever after from now on though, because I have kind of felt more Autistic than ever recently and my difficulties have been high in my own awareness and consciousness. It's now about starting to piece together what I can do next. The building up of the understanding is I hope just the first part, and hopefully some kind of progress can be made at some point as a result of all of this.

Do feel free to PM me if there is anything you want to say or ask in private, I will get back to you. Otherwise I'm happy to discuss in public on these threads in case any one else wishes to join in, or if anything on these threads can help anyone else.
 
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I was diagnosed at age 29. It went undetected as the symptoms could seemingly be explained as social anxiety, introversion and other things. I always suspected my brain was different, but could never really explain how.

It's high functioning. I had an IQ test at 17 (WAIS-III) and scored very highly, particularly in one area 'Abstract reasoning' in which I scored 99th percentile. Not savant, but gifted in that area. I was a very accomplished chess player in my childhood and was top 50 in the nation for my age bracket.

From a young age I've had trouble with eye contact. I always thought it was just social anxiety or low confidence, but apparently it's not. I have trouble even looking at people I am ultra comfortable around, like my family. Looking at anyone in the eye for more than just a few seconds is extremely uncomfortable, it invokes something like a panic response. Fairly odd. I feel like they can almost read my mind or see into my soul, and it freaks me out.

I've always been terrible at picking up on social cues, even obvious ones. I have difficulty creating or maintaining social relationships, and social situations in general. I tend to overfocus on things in a detrimental way. I will dwell on long past social situations or awkward memories for weeks, months, years. I often have a very difficult time expressing myself or talking at all unless it's through writing. I commonly overshare personal information. Few other things.

I was exposed to drugs at a very young age, by 14 I was actively using heroin and meth. Combined with my natural anxiety and introversion, I was never diagnosed. When you're an addict with anxiety that seemingly becomes the totality of your problems. Just get sober, work the plan and you will improve, right?

I wish it was that easy.

and it's all complicated by a psychedelic drug induced schizophrenic episode I had 4 years ago, which I made an almost complete recovery from, but when I came out of it my autistic like symptoms seemed to be worse (and that never went away)
 
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I was diagnosed at age 29. It went undetected as the symptoms could seemingly be explained as social anxiety, introversion and other things. I always suspected my brain was different, but could never really explain how.

It's high functioning. I had an IQ test at 17 (WAIS-III) and scored very highly, particularly in one area 'Abstract reasoning' in which I scored 99th percentile. Not savant, but gifted in that area. I was a very accomplished chess player in my childhood and was top 50 in the nation for my age bracket.

From a young age I've had trouble with eye contact. I always thought it was just social anxiety or low confidence, but apparently it's not. I have trouble even looking at people I am ultra comfortable around, like my family. Looking at anyone in the eye for more than just a few seconds is extremely uncomfortable, it invokes something like a panic response. Fairly odd. I feel like they can almost read my mind or see into my soul, and it freaks me out.

I've always been terrible at picking up on social cues, even obvious ones. I have difficulty creating or maintaining social relationships, and social situations in general. I tend to overfocus on things in a detrimental way. I will dwell on long past social situations or awkward memories for weeks, months, years. I often have a very difficult time expressing myself or talking at all unless it's through writing. I commonly overshare personal information. Few other things.

I was exposed to drugs at a very young age, by 14 I was actively using heroin and meth. Combined with my natural anxiety and introversion, I was never diagnosed. When you're an addict with anxiety that seemingly becomes the totality of your problems. Just get sober, work the plan and you will improve, right?

I wish it was that easy.

and it's all complicated by a psychedelic drug induced schizophrenic episode I had 4 years ago, which I made an almost complete recovery from, but when I came out of it my autistic like symptoms seemed to be worse (and that never went away)

A lot of that Honestly seems similar to my experiences. I utterly loathe eye contact and cannot achieve it under any circumstances.

Have you considered that you may also have experienced autistic burnout due to masking your symptoms long term? It is admittedly more common in assigned female people but assigned male people who also camoflauge as neurotypical can experience ruthless burnout. Perhaps have a Google search of 'autistic burnout' symptoms and tell me if anything resonates. Burnout is what took me from level 1 to level 3 in under 6 months flat.
 
Have you considered that you may also have experienced autistic burnout due to masking your symptoms long term? It is admittedly more common in assigned female people but assigned male people who also camoflauge as neurotypical can experience ruthless burnout. Perhaps have a Google search of 'autistic burnout' symptoms and tell me if anything resonates. Burnout is what took me from level 1 to level 3 in under 6 months flat.
interesting, I've never heard of this

Maybe I did have this, but it's difficult for me to say, though. I am an alcoholic (primarily) and polyaddict which is enough to cause nearly identical symptoms as autistic burnout

I certainly had difficulties that became worse over time in my last long term job which required constant social interaction, but again, I was constantly either drunk or hungover (or high, or all 3 lol) which would cause that. Alcoholism certainly decreases my functionality to a very large degree.

I have been becoming more "resentful" of life, my brain, and the deep frustration of not being able to function like a normal person. I need to get back into therapy, but have been isolating.
 
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The multiple different potential explanations and causes is very familiar to me too, and make up more of the reasons behind why I was diagnosed so late in life.

Many people I've encountered in groups and forums seem to view their Autism positively as some kind of super power that they would not change. I don't know if they are kidding themselves, or if they have managed to come to take a positive view of something they can't change. I'm definitely not there yet, nor am I sure I would want to be. I wouldn't want to be one of the Anthony Robbins type positive thinkers who seem to deny the realities of things if they are negative.

But I can see the strengths and positives that it gives me. The focus, the intense interests, the planning, the logical problem solving, the resilience and stoicism I've been forced to build up. Most of the problems and difficulties Autism causes me are completely due to other peoples reactions. It's not the being Autistic that causes me most problems, I can deal with most of those problems, it's the reactions and lack of understanding and acceptance from other people that causes the main issues for me.
 
There are actually a lot of people here who are on the spectrum, who have high IQ scores, who have social issues, who have trouble with their emotional intelligence and empathy toward others needs (although you do clearly actually care in your own autistic way) and find life in general frustrating. They're generally around their 20s or 30s and have a kind of odd stack of achievements and perception of how they value themselves, and wish to be valued by others. This is a drug nerd site with a heavy duty and basic need for harm reduction. Mental health and psychosocial neurological deficiency, or overvaluation and both together, or neither at all in some obsessive knack in trying to figure out what the hell is wrong rather than right with you is like a motto here.

I am exactly like this just like you. I have neurological issues with some major autoimmune disorder in combination with the autism and mood disorder and all that shit that's wrong with me and I don't have much for postsecondary marks to prove my dysfunction, but MENSA is now no longer able to score me according to the Norway site which was an interesting result for me as I've been going through some kind of savant syndrome the past two years and my addictions have plateaued and health plummeted. That's pretty fucked up.

I think that when you were doing that puzzle, you actually knew exactly how you were being off-putting to that man you were 'dating' because you explain exactly where you went wrong and then had to get your friends to voice to you why it's okay for you to be kind of mean like this because you're on a spectrum. There's nothing really that amazing here to me man.

I'm sorry if I'm being kind of (more than kind of) condescending here in my tone but this whole subject is such a special one for everyone involved - that no one actually gets what they want from the other in these situations. By not being honest with someone and telling them they need to leave if they're expecting a romantic partnership, and then you can't even be bothered to get off a fucking jigsaw puzzle to give the poor guy a hug? You need to start being kinder to people. That's all. When you want to be, obviously. Like me, right now. I'm not really being nice here, but I do mean well.

I'd go lay down with the guy though at least. I don't need a scripted sounding board to validate my autism either. I need to be made into the sweet, loving person I'd be trying to be if I was at your apartment or whatever and you were ignoring me to do a puzzle.
 
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