Eligiu
Bluelight Crew
- Joined
- Jul 8, 2017
- Messages
- 1,428
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.
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.
Last edited by a moderator:
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.
