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

[Eligiu]

Autism Hack: putting your heater in your bathroom and switching it on before you shower so that the temperature differentiation doesn't make you not want to shower as much. I did this this morning for the first time ever now that I have an accessible power point in my new bathroom and it made such a difference, I'll probably be able to shower most days now because of figuring this out. I can't believe it took me this long to realise this hack.

 

[arrall]

Autism Hack: putting your heater in your bathroom and switching it on before you shower so that the temperature differentiation doesn't make you not want to shower as much. I did this this morning for the first time ever now that I have an accessible power point in my new bathroom and it made such a difference, I'll probably be able to shower most days now because of figuring this out. I can't believe it took me this long to realise this hack.

Not autistic but the temperature differentiation fucks with me. I never knew that it was a neurodivergent thing.

 

[Eligiu]

Not autistic but the temperature differentiation fucks with me. I never knew that it was a neurodivergent thing.

It isn't necessarily, just like no autistic trait necessarily means someone is autistic or it's an autistic thing if that makes sense. But autistic people are often over or under sensitive to temperature like other sensory aspects. I once had a client who wore shorts and a t shirt all year long no matter how cold it was because he just never felt the cold. Me on the other hand? Walking into a store after being outside in the cold messes with me and gives me a headache after I start sweating because of the difference in temperature.

Try this hack out, it'll make your showers much more pleasant. Just use a little space heater and plug it into the wall.

 

[Eligiu]

I had a friend who is also autistic come over tonight. He is also level 3. It was nice to talk about some of the shared difficulties we have. He was assessed by the same person who assessed me, and he was told something similar as I was, which was that we are both textbook examples of people who got by with our autism being as severe as it was because we are smart, but we could only last so long.

I find it funny how I more often than not get along with the vast majority of autistic people I meet, which is one of the reasons I work exclusively with autistic children and one young adult. We just click. That was one of the 'red flags' I realised when I started suspecting I might be autistic a couple of years ago.

Firstly, autism runs in my family very strongly.

Secondly, a lot of my friends (and a few in particular were very vocal about this) often made pointed remarks about how 'aspergers' I am or how autistic I might be being. That was pretty constant throughout university.

When I started working as a support worker with autistic clients I found it remarkably easy, where most neurotypical people comment on how hard the job is. I often get told that I must be 'very patient' to be able to do my job lol. Not really, I just have fun with my pals.

Parents of my clients almost without fail asked me where I fell on the spectrum. The first few times this occured I told them I wasn't autistic, and they would sort of smile and nod and go 'sure you aren't' until it happened so frequently I would go 'im not sure, I've never been assessed by I'm probably on there somewhere'

I did a reliable online test a friend who got diagnosed a year or so before me sent to me and scored very highly on it, which added to my suspicions.

I signed up with one place to do an assessment and they had a year long wait list. They sent out a bunch of paperwork including some forms for my family (or friends in my case, and older brother) to fill out giving them information about any autistic traits I had and how I behaved.

I also wrote down in a document all the things I could remember over my lifetime which made me think I might be autistic, and I wrote some questions for my parents to answer as well.

The second place I went to had a 9 month long wait list, but I got a call about a cancellation 6 months in and immediately booked that appointment because I was struggling so much.

Honestly, when I first put my name down to be assessed I wasn't going to apply for the government funding assistance program we have, because I figured I would be level 1 and I was truly just curious as to whether I was right about being on the spectrum.

By the time August came around I'd decided that if I got a diagnosis of level 2 or level 3 I would apply for NDIS because I urgently needed whatever help I could get.

The assessment was kind of weird because I really had no idea what she wanted me to say, the questions were asked in such a vague way they didn't prompt any specific responses. She asked me about any trauma and I disclosed it then told her I'd done a lot of therapy for it, which seemed to pass some test. Then she asked me a bunch of questions about my mental health and substance use (I was abstinent at the time) then she started questioning me about the criteria. She asked about social communication, non verbal interaction, difficulties in maintaining friendships, restricted and repetitive interests, and sensory stuff. I fully met each criteria in each category, according to my report.

At the end of my assessment I was just like 'well, what does it all mean? Am I autistic, or is it something else?'

She just went 'You are absolutely very autistic. If you'd been assigned male at birth I would suggest that you'd have been diagnosed as a child. If you were less intelligent too, you'd have been picked up ages ago. Unfortunately for you, neither of those things happened and now you've burnt out.'

I honestly wasn't expecting level 3, because I have some clients who are level 2 that I feel fall higher on the spectrum than I do, but then I remember that she is a seasoned professional, someone who has been diagnosing women and trans men for 15 years in adulthood.

One of my ex friends, a guy I fell out with not long after this told me he didn't think I was level 3, after I just finished explaining to him that I need friends to tell me whether they're mad at me or just busy otherwise I go mental automatically assuming I've done something to piss them off. I told him that was an autistic thing and he was like 'i think you *want* it to be an autistic thing, it's actually just your anxiety' and I went 'yes, the social anxiety. Caused by the autism.' That was when he said he didn't think I was level 3. It actually really upset me because he was basing his assumptions of that off the fact that I still heavily masked around him, because of his tendency to make fun of anything autistic I did. When I got home I remember sending him a huge text message explaining why what he said was upsetting, but he didn't reply. It was kind of weird, because the same day he said he didn't think I was level 3, earlier in the day he told me that he got a coke can out of the fridge for me to drink and left it on the kitchen bench. Because I was so fixated on painting his house I forgot about the coke can completely until his partner got home and asked what it was doing there. He yelled out 'fuck, sorry Eli. I forget if I don't physically hand you food or drinks that you won't stop what you're doing to go get them. I'll grab another one for you now' so he got another one, and brought it back to the room I was painting in and shoved it in my face until I took it and stopped painting.

So somehow simultaneously I am both unaffected by autism, and severely affected by autism. All in the same day, as witnessed by the same person. Who ironically filled out part of my assessment paperwork and encouraged me to get assessed but then later didn't agree with the results.

To be honest, I think he was hoping I'd come back as level 1 so that he wouldn't need to make any adjustments to his behaviour. When I came back as level 3 it was more like 'you have an obligation as a friend to try and help where you can in terms of accommodating needs' and that may have been too much work for him. He was expecting a mildly affected version of me, not a completely inept one.

Guess he just didn't want a retarded friend.

I honestly wish I came back level 1 as well, and still functioned the same way that I used to. I miss being able to work more than 10 hours per week, see friends, do my law stuff, play sport, and progress forward in my life. Accepting that I need to pay all my supports to hang around me every day because I don't have any friends to lean on was a harsh pill to swallow. Everyone in my life is paid to hang out with me, except on the very rare occasion I might see a friend. I need to be prompted to do basically everything or it just doesn't occur to me to do it, yet for some reason I still engage in self harm and drug use.

I wish I had the version of autism where I got some cool talent and was just a bit awkward instead of being disabled.

 

[Mysterie]

how does the autistic community feel about self diagnosis?

because for me to see a professional to get diagnosed would cost maybe $2000 aud and 6 months or more , and because i am poor that is not an option for me.

 

[AlphaMethylPhenyl]

I thought I had autism but I think now that it's another mental illness. I always had issues with friends, though.

 

[Snafu in the Void]

I thought I had autism but I think now that it's another mental illness. I always had issues with friends, though.

I'm curious, would you mind clarifying?

It was the opposite for me, I thought I had various other mental problems but it turnes out to be ASD

 

[AlphaMethylPhenyl]

I'm curious, would you mind clarifying?

It was the opposite for me, I thought I had various other mental problems but it turnes out to be ASD

No prob! I think that I was depressed when I was young and had few friends. But I was still able to power through and blend in with the others. I was 15 when I started taking psych meds, and I was doing decent. I think that I was getting high off of SSRIs though, which I mistakenly thought was the point. When I was 16-17 I started getting symptoms of schizophrenia, however. My friends kind of just left me, with a few notable exceptions. I was pretty social up until age 16 or so. I was a heavy weed smoker too, which didn't help things. Anything else I can speak on? THanks.

 

[Snafu in the Void]

No prob! I think that I was depressed when I was young and had few friends. But I was still able to power through and blend in with the others. I was 15 when I started taking psych meds, and I was doing decent. I think that I was getting high off of SSRIs though, which I mistakenly thought was the point. When I was 16-17 I started getting symptoms of schizophrenia, however. My friends kind of just left me, with a few notable exceptions. I was pretty social up until age 16 or so. I was a heavy weed smoker too, which didn't help things. Anything else I can speak on? THanks.

I'm really curious about your experience with SSRIs. I took SSRIs as a teenager but did not have an abnormal reaction to them. I developed drug induced schizophrenia later in life after heavy use of psychedelics, alcohol and other drugs. Heavy cannabis use from a young age as well. Afterwards taking any SSRI made my symptoms worse, and I can no longer take them. I've concluded that I've incurred serotonergic damage, or that I have some imbalance relating to my serotonin system. Almost all serotonergic drugs exacerbate my symptoms, although I have luckily made a strong recovery from where I was 4 years ago. I'm doubtful I would still qualify for a schizo diagnosis as I did then, but do have persistent symptoms although fairly mild.

Curious what you mean by they made you feel high?

Sorry if I'm prying, I just don't have a lot of people I run into in which I can compare my own symptoms to.

 

[Snafu in the Void]

how does the autistic community feel about self diagnosis?

because for me to see a professional to get diagnosed would cost maybe $2000 aud and 6 months or more , and because i am poor that is not an option for me.

I really don't see the point in self diagnosis for two reasons. It's easy to overdiagnose yourself, and may cause undue distress. It could be you do not have ASD, but something else, and then never get the right treatment should you seek it.

The second reason is self diagnosis doesn't include being treated or guidance for it if you do have it.

I don't know how the system works in Australia, but in the US if you are diagnosed with autism, depending on the severity, you may be eligible for disability and support from the government, which is not only nice but is often essential to function with this condition. At least within this country.

Assuming it works similarly down there, if you believe you have autism and it's effecting your ability to function in life, I think it would be a worthwhile investment.

 

[Jabberwocky]

how does the autistic community feel about self diagnosis?

because for me to see a professional to get diagnosed would cost maybe $2000 aud and 6 months or more , and because i am poor that is not an option for me.

i think self diagnosis is valid. mostly cos my diagnosis was almost entirely based on a questionnaire.

admittedly my parents also had to do the same questionnaire (i was 32) so there was something other than just what i said to base it on.

i don't see why you can't do the same. unfortunately i can't remember the name of the questionnaire i had to do, it had over 200 questions so was very in depth.... and i scored over 100 above the threshold for autism so it was quite conclusive.

if self diagnosis leads you to understand yourself better, be easier on yourself, and leads you to find it easier to navigate the world, then that's good. one thing i would say is that if you need accomodations for employment, i think you need an official diagnosis.

I really don't see the point in self diagnosis for two reasons. It's easy to overdiagnose yourself, and may cause undue distress. It could be you do not have ASD, but something else, and then never get the right treatment should you seek it.

The second reason is self diagnosis doesn't include being treated or guidance for it if you do have it.

the above notwithstanding, i agree with these points. getting guidance is crucial. and yeah, it might not be ASD and a diagnosis of something that isn't fundamentally treatable (i.e. you can't cure it but treatment can help you cope) is definitely more stressful than something that has better treatment outcomes.

i was so relieved to find out what it was. suddenly everything made so much sense. i'd never really considered autism, and i didn't know my parents had, but when i went to rehab they pushed really hard for me to get tested and i was so glad they did. i stopped putting pressure on myself. there's certain shit i'll never find easy, and that's ok.

 

[Snafu in the Void]

i think self diagnosis is valid. mostly cos my diagnosis was almost entirely based on a questionnaire.

This is a good point I've never really considered.

I've also been given questionnaires on various things, bipolar, ADHD, autism, etc... simple papers with answers from 1-5. Seemed rather primitive. Yet, this is also the foundation on any diagnosis or therapy. Self answered questions.

 

[Jabberwocky]

This is a good point I've never really considered.

I've also been given questionnaires on various things, bipolar, ADHD, autism, etc... simple papers with answers from 1-5. Seemed rather primitive. Yet, this is also the foundation on any diagnosis or therapy. Self answered questions.

yeah its fucking nuts really. i guess its hard cos outside of an inpatient setting you don't have much to go on but what the patient self reports. for my ED i had clinical signs but most mental illnesses don't have that. and even in an inpatient setting they can get it wrong, i got diagnosed as bipolar II in my longest IP and its simply not correct. i guess the hope with these questionnaires is that they are given based on the patients reported history, so the therapist has some reason to give them in the first place. but still, its woefully little given how life changing these diagnoses are.

 

[AlphaMethylPhenyl]

I'm really curious about your experience with SSRIs. I took SSRIs as a teenager but did not have an abnormal reaction to them. I developed drug induced schizophrenia later in life after heavy use of psychedelics, alcohol and other drugs. Heavy cannabis use from a young age as well. Afterwards taking any SSRI made my symptoms worse, and I can no longer take them. I've concluded that I've incurred serotonergic damage, or that I have some imbalance relating to my serotonin system. Almost all serotonergic drugs exacerbate my symptoms, although I have luckily made a strong recovery from where I was 4 years ago. I'm doubtful I would still qualify for a schizo diagnosis as I did then, but do have persistent symptoms although fairly mild.

Curious what you mean by they made you feel high?

Sorry if I'm prying, I just don't have a lot of people I run into in which I can compare my own symptoms to.

Nah you're good man! That was way in the past so its hard to recall. Seems like it was a stimulating hypomania. Happens a lot in those with bipolar disorder.

 

[Eligiu]

how does the autistic community feel about self diagnosis?

because for me to see a professional to get diagnosed would cost maybe $2000 aud and 6 months or more , and because i am poor that is not an option for me.

Official autism diagnoses tend to be unattainable for a vast majority of people, so the community in general does accept self diagnosis. The only time I would really recommend that you seek professional opinion on it is if you also have a history of early childhood trauma as that can mimic symptoms and you really need a developmental psychologist with a lot of experience to detangle which issue is causing what problems. That's the reason I went to see who I did, as she has a lot of experience diagnosing people with complex PTSD and autism.

Like @Snafu in the Void said, where I live the main reason for seeking confirmation of a diagnosis is to get the government funding you're eligible for which makes life a hell of a lot easier. I didn't initially seek out a diagnosis for that reason (when I made my appointment I was just curious, and it was before I got severe autistic burnout so I likely would have been assessed as level 1 and not qualified for any funding anyway) but by the time my assessment came along I was barely functional anymore.

The place I went to sent out a bunch of forms for me to do, including around 10 pages of paperwork for my friends and family to fill out about my behaviour and traits, a self reported questionnaire that I scored really high on, and I wrote some questions out for my parents to answer as well as a list of things I could recall throughout my life which I suspected were due to being on the spectrum. They tend to like more information rather than less. Then I had a 3 hour assessment where I was asked a whole bunch of questions and at the end got a letter then 6 weeks later a full report.

You could probably get a provisional diagnosis from a clinical psychologist if the full assessment is out of reach for you, which is just as valid but doesn't open many doors to support.

In any case, generally autistic people view self diagnosis as valid because most of us all self diagnosed before getting confirmation and we were just lucky enough to be able to afford it.

 

[Mysterie]

Official autism diagnoses tend to be unattainable for a vast majority of people, so the community in general does accept self diagnosis. The only time I would really recommend that you seek professional opinion on it is if you also have a history of early childhood trauma as that can mimic symptoms and you really need a developmental psychologist with a lot of experience to detangle which issue is causing what problems. That's the reason I went to see who I did, as she has a lot of experience diagnosing people with complex PTSD and autism.

Like @Snafu in the Void said, where I live the main reason for seeking confirmation of a diagnosis is to get the government funding you're eligible for which makes life a hell of a lot easier. I didn't initially seek out a diagnosis for that reason (when I made my appointment I was just curious, and it was before I got severe autistic burnout so I likely would have been assessed as level 1 and not qualified for any funding anyway) but by the time my assessment came along I was barely functional anymore.

The place I went to sent out a bunch of forms for me to do, including around 10 pages of paperwork for my friends and family to fill out about my behaviour and traits, a self reported questionnaire that I scored really high on, and I wrote some questions out for my parents to answer as well as a list of things I could recall throughout my life which I suspected were due to being on the spectrum. They tend to like more information rather than less. Then I had a 3 hour assessment where I was asked a whole bunch of questions and at the end got a letter then 6 weeks later a full report.

You could probably get a provisional diagnosis from a clinical psychologist if the full assessment is out of reach for you, which is just as valid but doesn't open many doors to support.

In any case, generally autistic people view self diagnosis as valid because most of us all self diagnosed before getting confirmation and we were just lucky enough to be able to afford it.

thanks for your elucidation, i've made an appointment with a doctor so that i can get a referral to see a psychiatrist who specialises in autism and adhd, and see if i can get diagnosed.

this feels like the right step forward for me. i've been addicted to cannabis for the best part of a decade and also nicotine and lately alcohol, co-dependent relationship for 2 years, i want to work at the ugly root causes and gain understanding.

 

[Eligiu]

thanks for your elucidation, i've made an appointment with a doctor so that i can get a referral to see a psychiatrist who specialises in autism and adhd, and see if i can get diagnosed.

this feels like the right step forward for me. i've been addicted to cannabis for the best part of a decade and also nicotine and lately alcohol, co-dependent relationship for 2 years, i want to work at the ugly root causes and gain understanding.

That seems like a good idea to me. One thing to be aware of with an autism diagnosis though is that you have to *fully meet* each criteria, and that is more than just social difficulties or sensory issues. There's part A and part B of the assessment which cover different aspects of the diagnosis. Part A includes 'persistant deficits in social communication and social interaction across all/numerous domains, not accounted for by general developmental delays and manifested by ALL THREE of the diagnostic criteria in part A. Then part B is restricted, repetitive patterns of behaviour manifested by AL LEAST TWO of the following. Then they have 3 categories for that part.

I fully met each category in both part A and part B.

The other aspect of diagnosis is that symptoms have to be present in childhood, so I do suggest some information from parents or siblings as well as from yourself recounting anything you can remember.

The last part is that youneed to experience some level of functional impairment from the condition. If you aren't at a impaired (which is sounds like you are) then they won't usually give a diagnosis.

In some places (like where I live) you will get a level with your diagnosis. This indicates the level of support you require.

Contrary to popular belief, levels do not line up with 'high and low functioning' (which were never officially diagnostic terms but rather terms used to differentiate Asperger's syndrome aka autism without an intellectual disability, eg those who could work and contribute from those with autistic Disorder aka autism with an intellectual disabilty and people who were a burden. We do not like those terms.

Someone can be level 3, and very smart. It actually is not uncommon. The old diagnostic criteria where they took IQ into account was replaced because IQ has nothing to do with autism, and is a seperate disability.

So I am not 'low functioning' as a level 3 person, I just have 'high support needs' like constant prompting, reminders to do tasks, personal care, to eat. Even today I was late to an appointment and missed another one because my support worker forgot to directly ask me if I had any appointments to attend today. Instead he asked 'is there anything else we need to do' and I said 'my laundry and my tax' and I didn't even check my phone for my afternoon appointment. They ask me when I most recently showered, which serves to ensure that I now shower once every two days instead of once per week. Being reminded to brush my teeth means I actually do it, because otherwise I'll skip it as I hate the sensation. I need reminders about wearing the same outfits for days at a time and dressing in clean clothes instead, and additionally doing my laundry on a regular basis. I also have a specific support worker who calls me morning and evening to be on the phone while I take my meds. Before I hired him i would miss half my weeks doses. Now I can't remember the last dose I missed. My support workers also engage me in social activities, like taking me to play badminton, or teaching me how to use my manual camera. They might accompany me when I rarely see a friend to help me with the anxiety. In some respects they're a paid friend. I have very limited social engagement because I stupidly picked all law students as friends now they're all off as barristers and solicitors. Their idea of catching up (drinks after work in a group) is decidedly not *my* idea of catching up (one on one playing Nintendo Switch at my house). I may see a friend once every months.

So there *are* autistic people who are more profoundly impaired than I am but that is always because they have an additional developmental disability or intellectual disabilty. As far as the autism goes we are equal in impairment but they have more problems due to compounding factors.

 

[Mysterie]

That seems like a good idea to me. One thing to be aware of with an autism diagnosis though is that you have to *fully meet* each criteria, and that is more than just social difficulties or sensory issues. There's part A and part B of the assessment which cover different aspects of the diagnosis. Part A includes 'persistant deficits in social communication and social interaction across all/numerous domains, not accounted for by general developmental delays and manifested by ALL THREE of the diagnostic criteria in part A. Then part B is restricted, repetitive patterns of behaviour manifested by AL LEAST TWO of the following. Then they have 3 categories for that part.

I fully met each category in both part A and part B.

The other aspect of diagnosis is that symptoms have to be present in childhood, so I do suggest some information from parents or siblings as well as from yourself recounting anything you can remember.

The last part is that youneed to experience some level of functional impairment from the condition. If you aren't at a impaired (which is sounds like you are) then they won't usually give a diagnosis.

In some places (like where I live) you will get a level with your diagnosis. This indicates the level of support you require.

Contrary to popular belief, levels do not line up with 'high and low functioning' (which were never officially diagnostic terms but rather terms used to differentiate Asperger's syndrome aka autism without an intellectual disability, eg those who could work and contribute from those with autistic Disorder aka autism with an intellectual disabilty and people who were a burden. We do not like those terms.

Someone can be level 3, and very smart. It actually is not uncommon. The old diagnostic criteria where they took IQ into account was replaced because IQ has nothing to do with autism, and is a seperate disability.

So I am not 'low functioning' as a level 3 person, I just have 'high support needs' like constant prompting, reminders to do tasks, personal care, to eat. Even today I was late to an appointment and missed another one because my support worker forgot to directly ask me if I had any appointments to attend today. Instead he asked 'is there anything else we need to do' and I said 'my laundry and my tax' and I didn't even check my phone for my afternoon appointment. They ask me when I most recently showered, which serves to ensure that I now shower once every two days instead of once per week. Being reminded to brush my teeth means I actually do it, because otherwise I'll skip it as I hate the sensation. I need reminders about wearing the same outfits for days at a time and dressing in clean clothes instead, and additionally doing my laundry on a regular basis. I also have a specific support worker who calls me morning and evening to be on the phone while I take my meds. Before I hired him i would miss half my weeks doses. Now I can't remember the last dose I missed. My support workers also engage me in social activities, like taking me to play badminton, or teaching me how to use my manual camera. They might accompany me when I rarely see a friend to help me with the anxiety. In some respects they're a paid friend. I have very limited social engagement because I stupidly picked all law students as friends now they're all off as barristers and solicitors. Their idea of catching up (drinks after work in a group) is decidedly not *my* idea of catching up (one on one playing Nintendo Switch at my house). I may see a friend once every months.

So there *are* autistic people who are more profoundly impaired than I am but that is always because they have an additional developmental disability or intellectual disabilty. As far as the autism goes we are equal in impairment but they have more problems due to compounding factors.

why do you say i'm not impaired by having autism?

 

[Mysterie]

thanks for your response, its good stuff to know

 

[Eligiu]

why do you say i'm not impaired by having autism?

I said you are. I said if you aren't impaired (which probably isn't the case for you) then they would refuse diagnosis. My sentence may have been clunky but I assume most people who pursue an official diagnosis do so because it's causing some level of issue in their life.